Yellow Roses Bloomin'

In Process

2011-12-05T12:58:00.001-08:00

I just wanted to give you all a quick update. Right now, we are in the process of having my insurance approved for it to cover RIC’s full-day, month-long program. My case has to be reviewed by a medical board. At this point, there has been no news. So, I would appreciate your prayers.

Also, I have received a few leads on housing in the Chicago area but no definite options. It would be less expensive for me to say in an apartment or condo if someone is willing to rent it to me for only a month than it would be for me to stay in a hotel. However, I am open to any of your suggestions. Again, RIC’s Center of Pain Management address is

980 N. Michigan Ave. Suite 800 Chicago, IL 60611

Oh, and a couple praises for this fall and winter: my pain has stayed moderately low considering the weather changes, and for the most part, I am walking for the most of the time without any assistive walking devices (it helps to stay warm if I keep moving haha!)

Thank you, again, for your continual prayer and support!

Important Update

2011-11-20T13:12:00.001-08:00

I realize I told you that I would give you an update right after I returned from Chicago. Well, almost a week has passed, and I am finally writing this. In a nutshell, the Chicago trip went very well. Besides the appointment, we visited Garrett’s Popcorn (a “must-stop” when we visit), ate at the Grand Lux Café, and shopped at places like Fox & Nobel and Crate & Barrel.

I probably had the most thorough exam for my chronic pain that I have had to date. We were at RIC for over six hours. Yes, I met with Dr. Norm Harden, who has a brilliant understanding of chronic pain and its management, and the pain psychologist, Dr. Cole as well as a resident and a med student. So, I actually had a whole team attending me, and several different meetings/exams over the several hours.

I was fully prepared for them to determine that I have CRPS. So, of course, I was not surprised when they told me that, yes, I do have it and have had it for a couple years. What I was expecting was a secondary diagnosis, which is taking my parents and I a couple days to come to terms with. They told me also have Fibromyalgia. It is more well-known than CRPS, and coincidently people with one will sometimes have the other. Fibromyalgia is a musculoskeletal pain disorder. It starts at points or sections of your body; however, it usually becomes overall body pain, described as tender, aching, sore, burning or gnawing.The person is then hypersensitive to touch and pain. It is accompanied by other symptoms such as fatigue, sleep disturbance, headaches, cold intolerance, aural hypersensitivity, etc. To be quite honest, I think I have been dealing with this for several months. Also, the similarities between the two disorders have made it difficult to diagnose until now, and yet it answers many questions.

Dr. Harden recommended that I start RIC’s full-day, four-week program very soon. They would treat me for both CRPS and Fibromyalgia. He pointed out that I have missed some crucial and basic treatments in physical therapy, occupational therapy, biofeedback, support groups etc. I was very impressed with their medical staff and facilities and what they have to offer their patients.

My family is hoping possibly I will be able to go sometime in January. We are working out some financial and insurance issues. RIC is very expense, and insurance does not cover all the treatments. Also, I will have to stay in Chicago for the entire month. So, there’s housing to consider. RIC has a few hotel options for me. I am also wondering if any of you know of people in the Chicago area that know of places to stay or rent for a month that are near RIC:

RIC Center of Pain Management, 980 N. Michigan Ave. Suite 800, Chicago, IL 60611

Ideally, it would be great if I could find a place that is a block or two away from RIC, and I could walk there each day. I would appreciate any information or thoughts you have. We are just trying to pull all the information together before we go ahead with everything.

As always, I greatly appreciate your prayers, support, and help, especially as I have found out this new diagnosis and as we determine whether or not I will be able to go to RIC. God bless!

Windy City

2011-11-08T17:38:00.000-08:00

Next Monday, November 14th, my parents and I will be traveling to Chicago. The following morning, Tuesday, November 15th, I have a consultation at the Center for Pain Management of the Rehabilitation Institute of Chicago. It will be at least three hours long. We will be meeting with Dr. Norm Harden, who specializes in CRPS/RSD; a pain psychologist will also see me. Our understanding of the appointment is that the doctors will evaluate my case and determine if I am a candidate for RIC’s pain management program.

This appointment has been several months in the making. My parents and I started seriously looking at RIC last spring but decided I should try first an independent pain management program for the summer. I did make some good headway as I mentioned in my last update. In the long run, however, a more intensive program might work better for me. So, when fall rolled around, we decided to schedule an appointment at RIC. Overall, my health is much better than last year, but I have hit another plateau as the weather has become stormier and the cold fronts are rolling. I recent pain flare, which limited my mobility for a period of time, showed me how vulnerable I still am to the whims of this condition. When I hit a plateau last fall, I started going to Dr. Judy Lee, and her treatments have greatly improved my energy levels and decreased pain levels. Now, we are hoping that possibly RIC’s program will improve my condition even more.
So, I would appreciate if you would keep my parents, myself, and the doctors that we will be meeting with in your prayers during these upcoming week. Here a few specific prayer requests:

Safe travels there and back (we will be returning Tuesday evening)
Stamina, especially for me, for the trip and the appointment
That all the medical records and documents will be received before the appointment and that we would remember everything that we need to bring to the appointment.
Wisdom, insight, and discernment for the doctors, my parents, and myself for determining what is best for me and my care
That the doctors will be able to answer our questions clearly and concisely
That we will be at peace with the outcome of the appointment

Thank you all for your prayers and support! I will give you an update when we return!

Too Long

2011-11-06T17:00:00.000-08:00

Hello, dear friends!
It’s been way too long since I have given you an update. I know many of you have been asking and wondering how I have been doing. I appreciate your continued support and prayers! After my last update back in May or April, I soon realized that with my new pain management programs, I would not be able to keep up with blog updates. So for a quick overview: I started a personal pain management program back in May. Many hospitals and clinics around the country offer these type of programs. My pain psychologist and I, however, thought that I could handle doing one independently due to the knowledge I had gained over the past couple of years, her guidance, and the research I would be doing throughout the program. This independent program would also allow me the freedom to work at my own speed/intensity if you will while hospitals and clinics have more of an agenda to meet. The program included physical therapy; home exercise program; laser acupuncture; organic diet; reading books on pain management, neurofeedback, neuroplascity, etc; research on treatments and studies among other things. The house was being renovated throughout the summer so I left early in the morning and came back in the evening each day. This gave me a defined schedule for the program, which was rather helpful. While I had my ups and downs, I saw some great strides in stamina and mobility throughout those months. Also, the research was quite fascinating! It’s amazing what the body can do for itself if it’s allowed to heal and function properly!
There is something I would like to clarify. I think some people, maybe those I have met more recently, have a misunderstanding on what I’m dealing with or how I’m doing. I am doing much, much better than I was a year ago, and I am very grateful. Physically I might look healthier, and I might possibly look like I’m not in pain any more, but I am still struggling with chronic pain on a daily basis. Driving and walking were both goals for this summer, and I accomplished them. Yay! But they are only two of them. Driving and walking are stepping stones. I am very thankful that I have reached this point. A question I have been asked a great deal lately is am I working or when am I going back to work. The answers are no, and I don’t know. I couldn’t even contemplate about going back to work a year ago. Over the last couple of months, I have been able to sit and honestly think about what I want to do with my future. The future seems brighter, and I am more hopeful about starting to work again and possibly graduate school. In the meantime, my vocation is to keep my health stable and my average daily pain level low enough so that I can keep improving. Everything in my daily routine aims for this from sleep, diet, exercise, treatments, research/reading, hobbies, and, activities. I am even volunteering when I am able. The ultimate goal is to be able to cope with chronic pain on a daily basis in my personal life, family life, social life, and work life.
In one of my earlier posts, I mentioned that I might be seeing a doctor at the Rehabilitation Institute of Chicago for a 2nd opinion. Well, that time has come. I will be talking more about that in my next post.

Continuing With Life

2011-03-27T19:01:00.000-07:00

To heal does no necessarily imply to cure. It can simply mean helping people to achieve a way of life compatible with their aspirations – to restore their freedom to make choices – even in the presence of continuing disease. – Rene Dubos, Human Nature (1978)

Over the past couple of months, I have been coming to terms with the longevity of my illness; I am not talking here about the past two years but about the future. I was not able to blog about this until now, and I really have not spoken much about this in person until recently. I needed solitude in order to finally accept this conclusion. Speaking with my doctors and from my readings, CRPS/RSD is a highly random chronic pain condition, and each case is very individual. The key is to catch it early. In my case, I probably should have started my treatments five years ago but was misguided. My “real” treatment started about two years ago. With all the advances of modern medicine, CRPS/RSD, along with other pain conditions, cannot be cured, because doctors/scientists do not know the cause. The hope is that a patient will go into remission after the interdisciplinary treatments. However, there hits a point when a patient needs to live the rest of his/her life and not live his/her life for the pain. This is where the true pain management comes in. The person must learn how to live on a day-to-day basis managing his/her pain as well as balancing his/her family, social, and work-related roles. I am at this point. Doctors still cannot give me a timeline even though I am doing better than last year. However, none of us think I am at where I should be. Thus, it is now time for me to learn how to manage life without pain as the center point. I really started this education two years ago at a very slow pace, but now it needs to be the focus. From my understanding and research, there are thousands of people in the U.S., who live in pain daily and still live fulfilled lives. So, how do I get there? At this point, I don’t know all the steps. I have bought two books recommended by my pain psychologist: The Pain Survival Guide: How to Reclaim Your Life by Dennis C. Turk and Managing Pain Before It Manages You by Margaret A. Caudill M.D. Ph.D. M.P.H. I have started the book Managing Pain Before It Manages You. From what I have read, I have to say that it is a good review of what I have already learned, and it’s also an excellent educational source on pain management. We will just have to wait and see what I learn and hopefully improve on this spring. I am already inspired!

We are still looking into the rehabilitation institute in Chicago. There are a lot of loopholes with scheduling and insurances for such a venture. At this point, I am not sure what to tell you if I will actually be attending the program at RIC. It seems more likely that we will be going to RIC for a consultation at some point and to hear their input about further treatment. We will go from there. I have also been looking around the country trying to find similar programs for comparison. I am thinking if I do a program like RIC or another similar program it will happen about the next 6 months. This is a very guestimate and no way set. My doctors have told me that I could very well do this next step on my own with the help from the books mentioned above and a program constructed between the pain psychologist and myself. So, in the long-run, this step might look very different.

The final step will be relocation. I know weather is a key component that affects my pain. So, moving to a sunnier, warmer, drier climate will greatly help my progress. I have been researching the nation’s weather and have found that the climates in Southern California, Arizona, and Nevada are most suitable for me. Surprised, probably not…haha! Also, there are a couple of cities in Texas that look pretty good to me. If you have any input or options, please let me know. I am keeping my options open at the moment. However, I don’t think this step will happen for several months with everything else I did to accomplish to get to this point. But, at least, I have an idea of what part of the country would be most desirable for me, and I can keep my eye on it until then.

Quick side note: I had a lovely time in Ft. Myers. I would have written more updates, but the place I was staying had finicky internet. So I really couldn’t post anymore. Anyways, the daily sun and 80 degree did me wonders. My main goal down there was rest and relaxation, and I fulfilled it! I went to, I believe, Ft. Myers beach one day, and up to Sanibel another. However, I stayed put in Ft. Myers most of the time. did you know they call Ft. Myers, Little Venice or Venice? There are all these canals that lead right up to the houses; everyone has access to the ocean. Oh, the shrimp were huge! We went to this fish market, Skip One, a couple times. Best coconut shrimp! And all the fresh fruit! The vegetation is beautiful down there. The only unfortunate thing about the trip is that Florida is a humid state. I could handle it for the trip, but I don’t think I could live there. Oh well, at least I found that out sooner than later.

I know you are probably thinking: Amy, you haven’t brought up the issue of going back to work or grad school. Yes, I haven’t. That is still another hurdle waiting for me to tackle. At this moment, I can’t even tell you what my answer would be. It’s not that I haven’t thought about my options, and I admit have even dreamed a little, but I know there are many hills to walk over to even get to that point. And maybe my answer will come to me during the journey. This next part of my treatment is supposed to teach me management and balance so that the pain does not control my life and the rest of my life: family, work, social does not overwhelm my health. Hopefully, I will be able to find this balance and continue with my life. My life has changed drastically, and it will not return to as it was. I will have a new beginning, a new way of life, and I pray a fulfilled life, full of love, passion, and hope wherever I am.

The most difficult thing – but an essential one – is to love Life, to love it even while one suffers, because Life is all. Life is God, and to love Life means to love God. – Tolstoy “War and Peace”

A Milestone

2011-03-06T13:33:00.000-08:00

Today marks a milestone. It is not one I want to celebrate nor do I necessarily want to remember. On the sunny afternoon of Friday, March 6^th, I took a pleasant 4-mile power walk around Lake Lansing. As I was coming home, my right foot started feeling “strange,” like the muscles in my arch were sore and tightening up. I just thought I had done too much and needed to take it easy. However, as the days past, the pain increased to the point I couldn’t bear wait on my right foot. I was basically limping around work and grimacing every time I walked. It took me I recall about two weeks before I saw a doctor. And the doctor said it was a sprain, like I had done originally to my right foot. I finally ended up in the emergency room, because the pain and pain-related symptoms had gone too far. In the end, I saw a either five or six doctors before we reached the correct diagnosis: Complex Regional Pain Syndrome (CRPS)/Reflex Sympathetic Dystrophy (RSD). And while we knew what was going on now, I didn’t realize what journey I started.

Before I continue, I would like to mention that at the end of April is another landmark. It will be 5 years since the original injury. I am very thankful that I don’t remember that date, and if anyone of you knows it, I ask you to please keep it to yourself. I couldn’t bear to know it. That night was a living nightmare. I truly belief the initial nerve damage happened immediately. I have replayed the events of those 12 hours in my mind and have played the game of “would’ve, could’ve, should’ve,” but it doesn’t fix the problem and what happened, happened. I have worked through anger, blame, and self-pity. And have come to the conclusion, that those methods only produce more of the same thing. You can only forgive, let go, and trust that the Lord will heal and provide. God’s works in mysterious ways, and His thoughts are higher than our thoughts.

I could tell you about the countless hours I have spent in doctors’ offices and with physical therapists or all the different people now that consider to be on my medical team or the many procedures/treatments that I have gone through, but I am not. I have spent many blog updates doing that already. As I sat in prayer this morning, the Lord opened my eyes to see the many blessings he has provided me over the past two years. While this whole ordeal has taken longer than I have expected, I learned to be grateful for every small victory. And I am so thankful for how far I have come. The very fact that I am in Ft. Myers this March is such an accomplishment, and I am glad to be away from home for landmark. (I could not even bring up the 1^st anniversary with you last year.) The Lord has used this time to change me and heal me in ways I could not have imagined. I am not the same person I was in a few years ago, in a good way. I have blessed with many, many relationships that have blossomed and grown during this time. I have found that friendships are not limited to peers but come in all ages. The insight and wisdom from these people have encouraged me and helped me persevere. I cannot even begin to describe the blessings from my parents’ support and encouragement (financial, emotional, physical, mental, verbal, and spiritual). Basically, I could not have done it without them. And my siblings have stepped up to the mark to provide such love and support that is beyond their age. I am truly blessed by such a family. On top of all this, I have a multitude of people around the country who have continued to pray for me over these past several months. I am truly humbled and honored to know this and am very, very thankful.

So, while this is a painful cross for me to bear and the length of this season in my life is unknown, I still see God’s mighty yet gentle hand at work in my life. I see the Lord’s blessings continually and know I have every reason to be thankful and hopeful. His strength, faithfulness, and grace will allow me to persevere through every day. As I continue through this journey, my prayer is that I will rely on my Savior more every day and that I will be a light and an encouragement of His love to those around me.

When you are weak, He is strong

2011-03-03T19:33:00.000-08:00

Well, I am here! As I ended last night's blog update "on my knees," I knew that it was through God's grace I would get through today, and I have :) I realized that if I would be willing to see God's hand help and guide me today, He would open them. Quite honestly, it has been a blessing. Not everything went as planned and somethings I wish just hadn't happened. The security experience this time around was not as "agreeable" (if that even is an appropriate word of the experience) as the one in October; my sheepskin slippers set off some sort of an alarm of all things. Then, my walker was damaged during the flight. (I am walking much better these days; I actually could be using crutches if my arms could handle it. Oh, the day when I will be rid of that thing. I hope that I don't have to use one of them when I'm 80. I might rebel!) Anyways, I ended up being at the airport much longer than expected today. But I watched the Lord take me through this day step by step. For example: My dear mother was able to stay with from the ticket counter through security up til the gate. Or, the kind security woman who helped with transportation through the Lansing airport. Then there was the very quiet yet very quick flight here plus I was seated in the bulk head so my poor feet could stretch some. And, of course, my welcoming and godly hosts have been so helpful, understanding, and kind from the beginning.

Oh, and yes I am enjoying the sunny, warm weather :) I can already tell a slight boost in energy. So, I am so thankful I am down here and am going to soak up every minute of it!

Thank you for your prayers and support! All praise, honor, and glory to our Lord and Savior Jesus Christ!

A Dose of Sunshine

2011-03-02T19:28:00.000-08:00

I meant to write this update sooner, but I am leaving tomorrow morning for Ft. Myers. I am staying with some family friends for a week. My flight leaves from Lansing at 8:00 AM and arrives in Ft. Myers at 10:45 AM. I think it will do me some good to get out of the Michigan winter and into the warm Florida sun for a few days. This is my first trip alone in two years. So, it will definitely show me how far I have come in my progress and push me a little more. My family and I think this break from each other will allow us hopefully to rest and recuperate first of all and to gain a perspective on the next few months ahead. Maybe even see a little clearer what needs to be done for a more fuller recovery for me? Sometimes when you are set in a routine, it is hard to work your way out of it and maybe see a better way of doing things. We are hoping and praying that this slight reprieve will allow this. Quite honestly, I have been rather anxious about the trip, not knowing what to expect or how I will do. I have no idea what the Lord has planned for me in this upcoming week. But the best place to start is prayer... waiting patiently and trusting that the Lord will guide you each step of the way and knowing that He only desires what is good for you.

Plateau

2011-02-21T18:45:00.000-08:00

Dear friends,

It has been many, many weeks since I have given you an update. I am trying to figure out where to begin. Christmas and New Years have passed as well as Valentine’s Day; I have had a birthday. And the one-year anniversary of my surgery has come and gone. I am sure you have had some milestones yourself. These past few months I guess would describe them as inconsistent and thoughtful. Don’t worry; I will explain.

I will say first that I have managed this winter better than the last one, especially since my pain is considerably lower. For this, I am truly grateful. With that said, I realized very quickly that my energy level was considerably lower in the winter than in the fall or in the summer. If I pushed myself, I would either crash at 3 P.M. every afternoon and/or I would have a pain flare. So, I decided to be extremely patient with myself (that was/is a task in itself) and cut out everything except the very minimum. I knew I could slowly add tasks and activities as I was able to do so.

The most challenging hurdle during this winter has been an issue that I have absolutely no control over. This Michigan winter has been hard and unpredictable. Living with that type of inconsistency has been taxing. I quickly figured out that the humidity and my pain have a direct correlation and realized that my pain symptoms would start within 12 hours of a storm. I know I am my own weather man :) I keep a very close track of the weather these days and plan accordingly.

To touch on the thoughtful part of these past few months, I have had time to reflect on this past year as well as the future. Just that my pain level is maintained at a lower level is a huge relief. I have also noticed more stamina and more mobility. Just to name a few. At the present, the concern for my quality of life has entered the picture; I am not saying that it hasn't before, just that now it is at the forefront. In a sense, I have landed on another plateau. So we are asking the questions: What is next? Do I settle for this? What other treatments or approaches are out there? Where will the finances come from?

The acupuncture has allowed me to maintain a lower pain level, but it did not bring about the change or full response I expected. As we phrase it, the acupuncture has allowed me to climb to another plateau. However, I am not ready to settle. Also, it has come to our attention that our insurance will not cover these treatments. So, we are still trying to determine if we will stop them all together or spread them out over a much longer period of time, because I think they have proven to be a viable option for keeping a lower pain level, at least until we find another option.

Over the couple weeks, we have been researching a rehabilitation institute in Chicago for chronic pain patients. The patients attend 5 days a week, a full or half days, for a month long. Their approach is on function and behavioral/psychological coping with day-to-day pain in order to re-enter your social/work/family life. They offer similar services like physical therapy and pain psychology; however, their treatment is more intense and involved. Here is the website: http://www.ric.org/conditions/chronicpain/CenterPainManagement.aspx

So, those are the likely options among others. We are in the research phase, gathering information, working with insurance, and trying to not let too much time pass. As far as other things keeping me busy, I have been on a bread-baking spree for over a month. There is nothing like homemade bread coming out of the oven. I also have been attempting layer cakes recently. Yum! When I can withstand the cold, I do go out and socialize. And I have hosted a few parties. Actually, one is coming up in a few days!

As for future updates, I can’t promise you anything. I think I might either do shorter updates more frequently or longer ones once in a while. Hopefully, I will get back to the habit of writing soon. Please feel free to contact me by phone, e-mail, or Facebook. I would love to hear from you. And as always, I am very grateful for your continual prayers! I know the Lord has been watching over me this winter and will guide me in the next step. God bless you!

Under Your Tongue

2010-12-16T14:53:00.000-08:00

I have had around 6 IV laser treatments done this fall; they have proven to be the most helpful. It is a concern for some people that if you use a vein too much it will, in a sense, be all used up. I have small veins in general; also, the chronic pain constricts my veins. There is also a dehydration issue with RSD, which makes my veins smaller. So, it has been a concern how often I should have these IV laser treatments. After the last treatment, I had an extremely painful bruise, which is either due to the IV or the pressure afterwards. So, Monday my doctor suggested another treatment to me that is non-invasive. There are 4 or 5 lasers placed into a wand that you place underneath your tongue. There are many blood vessels in that area. The hope and goal is that the lasers will be absorbed into the bloodstream. The treatment lasts 20-35 minutes. The main concern is protecting your eyes from the lasers. During that part of the treatment, you can also have a laser acupuncture treatment, which treats your pain locally. So, it is almost like speeding up the IV treatment and combining the laser acupuncture and IV. I had that treatment Monday. It definitely worked with overall reduction in pain and increase in energy. My blood definitely was moving better after the treatment. The side effects were a little more intense than the other times. I will probably try it again next week so I can have something to compare. This might be a better treatment for me long term.

Familiar Symptoms

2010-12-16T14:20:00.000-08:00

As the first winter storm of the year hit, I started feeling the same, old feelings I experienced last year. I thought maybe they wouldn't return, because my pain has been moderately low over the past few weeks. My parents and I are beginning to realize, or maybe having ideas confirmed, that RSD is not just all about chronic pain in the extremities. Doctors have admitted that they don't understand everything about this illness. For some people, RSD enters their internal organs. Others it stays in their extremities. For me, we are beginning to think it has affected the internal "thermostat" in my body. In a sense, how my body adjusts to climate changes: temperature, humidity, precipitation, etc. My body can become extremely cold and continue to do so; or, it can overheat itself, and it's so hard to cool myself down. I can be feverish and chilled at the same time. It's so hard to regulate my body temperature! I am also constantly nausea, which I can't figure out if it is medication or pain that I am not feeling. So, I have little appetite. You probably remember my lack of sleep last winter. I was hoping that wouldn't happen again. However, I wake up in the night whenever a storm is coming or the humidity is high. Then an afternoon nap has to be in order, or I end up falling asleep at random times during the day. The whole sleep routine is out of wack! So, while I am so thankful that my pain is down, there are other symptoms still around that I am not sure what is going on or how treat the cause. I might be able to treat the symptoms a little. Also, I still have less energy than usual. The laser treatments seem to help increase my energy. They also get the blood flowing and heat my feet up as well as the rest of my body. Hopefully, each time there is some healing.

I think this will be a hard winter. These symptoms make it harder to get through each day. I would appreciate your prayers. Thank you!

An Experiment

2010-12-16T13:30:00.000-08:00

It seems over the past several months I have used almost every imaginable walking aid: axillary crutches, cane, walker, even a wheelchair. Heck, I have tried walking without any aid at times but that doesn't work very well :P The axillary crutches are supposed to be used for only short term use. If they are used for many months, they can start causing problems, even damage in the arm and shoulder regions. This is what has been happening over the past couple of months. It has been slow and not very apparent. At first, I thought it was RSD pain or something with my PT exercises. I realized that it was more likely the transitioning from using the crutches more than the walker. (I forgot to mention that my doctor has been trying to get me off the walker for a couple months now.) My right elbow and left shoulder just couldn't take the stress from supporting my legs any more. So, we were on a hunt for another walking aid to replace the crutches. Lofstrands seemed to be the most obvious option. However, I was very hesitant. The more I researched and practiced with them at PT, the more they didn't seem to be the best fit. During my research, I came across a company called StrongArm. They specialize in forearm canes. While they might seem like Lofstrands, they don't lock around your arms and are at a better/more comfortable angle. They are more sturdy than a cane as well. Here's their website, if you are interested: http://www.strongarmmobility.com/index.php. So, I am making a trial run with these. I have two of them. I am still using the walker too. The StrongArm canes seem to be giving me plenty of support and are not giving me any problems yet. It's an experiment, and they are still on their trial run, weighing all the pros and cons. None of my medical team knew about them so I am in new territory. I am beginning to realize that my journey through RSD might be this way.

Top Priority: Staying Warm

2010-12-04T14:01:00.000-08:00

As the temperature drops and snow returns, I can't help comparing my present health to last year at this time. To sum up last year, I was in excruciating pain all over my body, very cold, probably quite drugged, and in the midst of all those tests with Boston Scientific for the Spinal Cord Stimulator. For the present, I am in much less pain, staying warm for the most part, not as drugged as last year (thank goodness!), using the stimulator when necessary, and have found treatments that reduce my pain and will possibly allow my body to heal in time.

I have definitely slowed down now due to the cold. I have less energy and am sleeping more. My physical therapy activities take more out of me than they used to do, but I guess now it is even more important for me to continue them. I just have to be patient with myself and to take my time.

The main priority this winter is keeping me warm! When I start to get cold, my pain starts to escalate, I can have trouble coping, and I even start becoming feverish. It's just not a good place to go. Last year my body, especially my feet, would not respond to heat. We would put a hot pad on my leg or foot, and the heat would just stay at that spot and not transfer to other parts of my body. It was so strange! However, now the laser acupuncture is opening up my blood vessels that have been constricted due to pain and allowing other voluntary body functions to work properly in my feet that have been working at a very slow rate as well. So, I am actually feeling blood flowing through my feet again, which I haven't for a year and a half, and I even can sense warm spots in my feet. Also, my legs and feet are starting to transfer heat from one part to another. It's such a weird thing to be happy about, but I am :)

So here's my family's game plan to keep me warm this winter:

You've already heard about SmartWool Socks, and I'm getting my wear out of them...haha!

Cuddl Duds:

These long johns/undergarments/leggings and under-shirts (sorry, I don't really know how to describe them :P... http://www.cuddlduds.com/) were recommended to me last year by one of my physical therapists in order to keep me warm. I wouldn't dream of wearing anything tight around my then very painful body. Comfort was the main goal then; now it's warmth. They come in all different styles and fabrics for the wearer's needs and likes. I found a style that whisks away moisture and controls the temperature around your body. All I can say is they are AMAZING!!! They keep me so warm. I think they will keep me until them sun's warm rays come back.

Sheepskin:

I have stopped seeing my orthotist and pedorthist. It was a mutual decision; we were both thinking it had become a wild goose chase. I can always go back to them in the future if need be. They said I needed sheepskin for my feet this winter and gave me the best shoes brands to try. So the best couple weeks, my mom and I have been hunting for sheepskin slippers/shoes and boots. I need a slipper/shoe that gives ample support and surrounds my entire foot up to my ankle. So far, Haflinger's Siberia slipper is looking promising for the slipper. The boot search as been a little harder. I don't know how many boots I tried on; I am surprised my feet didn't rebel. Right now, North Face's Nuptse with a "goose down" like stuffing material and fur-lining around the top and sides will probably work for the boot. Thankfully, I have been working with a great local shoe store called Playmakers (http://www.playmakers.com/). They have an awesome staff and a great selection of shoes as well as outer wear and athletic clothes.

Miscellaneous:

As for other odds and ends that keep me warm, I have a portable space heater at hand. Then, of course, bring on those hot showers :) Thankfully, both of my parents' cars have heated seats that I will be taking advantage of the next couple of months. I will drinking plenty of hot drinks. Also, I have found baking and cooking to be a source of heat. It keeps me moving, it warms up the kitchen, and after the baking is done, I can leave the oven door open and absorb the heat :) There is always a blanket handy.

So, I am hoping and praying for a warm winter.

Prayers:

My prayer requests are that I would keep warm as the cold weather progresses. Also, I have noticed that I have been more emotionally worn out or vulnerable over the past couple of weeks. I don't know if it's the onset of the cold, timing of things, or what? There is definitely an emotional component in RSD, and I want to be careful and protect myself. I have an appointment Monday with my nurse practitioner. We will be discussing my current treatment plan. We are trying to decide whether I will have one more epidural treatment or if I will just continue with the laser acupuncture treatments. Also, they have been wanting me to transition from the walker to crutches. While trying to do so, I hurt my right elbow. So, we will be discussing this transition and other options.

Thank you for your continual prayers. They are truly a blessing to me. I hope you all had a wonderful Thanksgiving.

Finding Routine Again

2010-11-17T10:36:00.000-08:00

Well, you are probably wondering where I've been the past couple of weeks. I am in Michigan, not in San Diego. I know I wish I could have stayed :( We left on Thursday, November 4th as planned. I had expectations of writing blog updates each day for you, but it just didn't happen. However, this long of a break from blogging was not intended ;) So, how should I review the past couple of weeks for you? First of all, I am fine, actually really good. (I know sometimes a "blog absence" means things are not going well.) I'm just a little bit out of my daily routine, including writing blog updates... haha! As far as the update, I will start with San Diego:

San Diego - The whole trip went better than expected for me. My pain was lower, and my stamina and energy was higher than I have had for a year and a half. I thoroughly enjoyed the large dose of sunshine. I was able to accompany my family on a day trip to Sea World. I had been there a few years ago when I was in San Diego with a couple of friends and had a blast! Needless to say, my little siblings just as much fun. I did my share of walking, more than I had up to that trip. It's good to get those legs working, but I was so tired in the evening. (I have to inject something; I was walking with aid whether with the walker or pushing the transport chair. However, I was not quite in as much pain as in Michigan and definitely had energy or, at least, motivation. Also, I sort of kept up with PT. There was a pool. It was warm enough that I could stand getting into it. I remembered some of my pool therapy from a year ago. Oh, yes, my mom did get some shopping done, of course :) We found this wonderful coffee shop/bookstore called Upstart Crow. I think it was the best cup of coffee I have had in a very long time. The flights and car rides I have to admit were not that greatest, but I managed. What was rough on the way there, we adjusted on the way back. Thankfully, they were the minor/shorter parts of the trip. This is a very short overview of my time in San Diego. My parents and I did find out that my health does improve in a warm, temperate climate. I definitely would live there if I had the means... everything is so expensive. Hopefully, I can go there again soon for a health boost :)

Following Week - The effects of the flight, time change, and all around exhaustion did not hit until about the following Monday so I spent the weekend feeling absolutely great. I was able to do a couple social events including seeing my siblings perform a kids' version of Aristocats. Then Monday everything hit. I was so so tired. I know my daily routine isn't much compared to the normal busy person, but I couldn't complete complete it. Even now, I still haven't found it quite yet. On top of this, I had a total of 8 appointments in a weeks time. And, I was a having a great deal of trouble with my orthotics. (This all started to happen in San Diego.) So, basically I didn't know what shoes to where :P I finally made it through last week. And I am much better rested. My pain is still overall low. Though I am not liking the cold weather.

So, I think I have brought you fairly up to date. It is not as thorough as I would like but oh well. I am slowly gaining routine again. I am still having laser acupuncture treatments done, which I largely base my low pain levels on. The Lord has graciously brought me through these past couple of weeks without too many bumps or hassles and many more blessings and unexpected surprises. I have more things to tell you about but will save them for another blog post. Thank you for your prayers and continual support!

SD, CA: Days 1 & 2

2010-10-31T20:21:00.000-07:00

I bet you are all wondering how I am doing... I can say that I am doing very well. All in all, I made it here, and it went much better than expected. The actual trip here was exhausting, of course. Going through security was less stressful than anticipated though; they were very patient and gentle with me. Our flight was delayed, but we still made good time. As for the flight, I managed. I had to take a lot of medication in order to keep the pain down so I was feeling rather drugged. Also, I think I mentioned that when I am sitting, I need to keep my feet elevated in order to keep the pain down and the color in my feet normal. So that was rather interesting due to the small amount of space I had. My mom and I were sitting together so, at least, we had a little more room to work with. We will see what we can do for the return flight. It was such a relief to land and make to the hotel so that I could fall into bed and drift off into oblivion.

Saturday was a day of rest in the hotel room. There was some light rain early in the morning, which actually didn't bother me, because rain usually does. I was able to join my family for breakfast. My mom and siblings went out for a little while, but I stayed put in the hotel. They brought back our lunch from a city market, Ralph's. I had a fresh crab salad on spinach with fresh avocado, scallions, bleu cheese, peas, and a balsamic vinaigrette. The afternoon was spent napping, and there was also a Starbuck's run ;) For dinner, we ate at the hotel's restaurant, and I had grilled scallops, wild rice, and broccilini, which was amazing! (If you can't tell, I love seafood!)

I forgot to mention that, from our hotel window, you can see a the maritime museum in the bay. It has an aircraft carrier loaded with jets and also couple submarines surrounding. From our view, there is also a larger than life painted statue of "Kissing the War Goodbye;" it is rather romantic :)

Today, I had a quiet morning, took my time getting ready. I can not do all my PT here, but what I can do I am still trying to fit it into my routine. I have to admit I took another delightful nap this afternoon, actually my whole family did. Then my mom and I walked from our hotel to Seaport Village. That walk was more than I have done in a single time for a long time, probably a year ago last August. I did it, and I'm glad! However, my feet were definitely tired afterwards :)

So, overall, I am rebounding much faster than expected. My pain is still very low. I think my body, especially my feet, is really enjoying this weather :) I am still pacing myself wisely and am savoring every moment here!

A Trip for My Health

2010-10-29T07:04:00.000-07:00

The treatments this weeks have given me much relief :) I'm very grateful. I think we are finally on the right track as long as my insurance complies. (That is a huge prayer request, by the way; we are still not sure if these acupuncture treatments are covered by my insurance. This doctor is trying to work it out so at least part of it will be covered.) It is so AMAZING to have moments of PAIN FREE! Praise the Lord!

And because these treatments have worked, I able to go on a trip with my family this week. This is very short notice, but I guess that is how I am living these days :P We didn't officially decide until yesterday, even though we had been thinking and discussing this idea for a couple months. My family and I are flying to... SAN DIEGO TONIGHT!!! What a perfect place for me to relax and soak up the sun for a couple days :) My dad has a business meeting in the city. My mom and younger siblings were going to accompany him all along. We thought this would give me an opportunity to see how I would do in a warm, temperate climate. We ran the idea by my medical team, and they highly encouraged me to go. We leave tonight from Metro Detroit at 7:30 and arrive at San Diego hopefully around 11:30. My family and I will be there almost a week.

My biggest concerns are more packing and airport related than actually once we are there in San Diego. (Thankfully, I have been there a few times.):

When packing today, please pray I do not forget anything important like medical items. San Diego is too far away to come back to Haslett for retrieval :)
Please pray that everything goes smoothly through airport security. I am in a different situation, because of my stimulator. I hope the security is understanding and gentle with me.
I have not been in a plane since this illness has happened. So, I do not know how this might affect my pain. My NP gave me a few helpful tips for the plane ride.
Then once I am in San Diego the biggest issue with be to PACE MYSELF whether I am feeling good or not. That is my prescription from my doctors. I am bringing my walker; we are also bringing a transport chair, which is like a wheelchair. I have accepted the fact that I might be more tied down while we are in San Diego. But that's okay, my goal while we are in San Diego is to just enjoy myself and soak up the warmth and the sun :) We will just wait and see what happens to my health once I arrive.

So California here I come!!!

One, Two, Three

2010-10-26T03:06:00.000-07:00

Since my last update, I had my second IV Laser Acupuncture procedure. It proved moderately helpful. I had more relief in some parts of my body than others. I think there were outside forces at play this time. The day before I had adjustments done to my orthotics, and they made my pain worse in my left foot. So, that didn't help! Also, I am finding stress plays a huge factor in my pain level and also how receptive I am to pain treatments. So, if my schedule becomes unusually busy or I become anxious or stressed, for example :), my pain rises and then I have a harder time coping with it. I guess one of the good things though that has come out of this illness is my better ability to cope with stress and anxiety through the tools given to me by Pain Psychology :)

As for this week, I have a rather busy schedule. On top of PT, which I am still doing regularly, I have three appointments/procedures:

Today I have an IV Laser Acupuncture appointment at 3:15 P.M. I'm finally know the routine with this procedure. It's taking about 24-36 hours to recover; at least, I need to take it easy and rest. No PT the next day. Last time, I was just really, really tired and the same sick-to-my-stomach symptoms occurred again. However, I am hoping each time gets better.
On Wednesday, October 27th, I have an Orthotics at 2:00 P.M. I haven't kept you up to speed lately with this issue. The orthotic for my right is working out great; I think we finally have it settled for now. However, my left orthotic has caused more negative issues than positive results, and I am not sure what to do from here. I would appreciate your prayers with this issue. I really need wisdom and guidance on the next step.
Then, on Thursday, October 28th at 1:00 P.M., I have a Laser Acupuncture appointment. I am trying something new this week. Some patients have found it beneficial to do both the IV and Laser acupuncture within the same week. Since the last procedure did not give me as much relief as expected, I thought I might try this combination. This doctor has told me that it takes time for patients to find the routine that is most beneficial to them. So I will be patient and hope we will find a good combination soon :)

If the Lord is willing, these appointments will all be beneficial to me. Thank you for all your prayers, encouragement, and support! The Lord is faithful!

Side Note

2010-10-18T18:58:00.000-07:00

As you know, I am having another IV laser acupuncture procedure done tomorrow at 4:15 P.M. I am praying and am very hopeful that it will be as successful as the last one. The relief that I have experienced these last few days has been such a blessing. I did forget to mention one thing in my last blog update. There are side effects with this procedure. I was forewarned about them thankfully and am told that they decrease with successive procedures. Basically, last Thursday evening and into the wee hours of the morning I felt as if the blood in my body was rushing at 100 miles per hour, like someone had given me a couple shots of caffeine and red bull. I didn't have any anxiety and nervousness thankfully. I just couldn't sleep. On top of that, I felt like I was feverish and had a stomach bug. The feverishness was due to my body working at a much higher and probably more efficient speed than I had been accustomed. And the stomach issue, I think was all the toxins in the bloodstream being pushed through my system. So, I'm guessing that will happen again tomorrow evening and for at least 12-16 hours after the procedure. (I thought all-nighters ended after college, but I guess I was mistaken... haha! Thank the Lord for movies, Netflix, Hulu, Youtube, and books :) ) However, however I have to say that through all of this I could tell that my body was working towards repairing itself. It is in the process of healing itself. All this happening is good. One small, good, healthy step at a time.

Thank you for your prayers and encouragement! The Lord is good!

Light

2010-10-17T13:54:00.000-07:00

Jesus said, "I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life." - John 8:12

Over the past couple of weeks, I have been pondering the many aspects of light, earthly and heavenly. How light can be powerful, glorious, beautiful... and now healing. I often wonder what it will be like when we will be in Heaven, where it is all light and no darkness. How glorious, how renewing!

This past Thursday I had a treatment done called IV laser acupuncture, or IV blood irradiation. The doctor puts an IV in your arm, attaches a catheter to it, and then fastens a tube with a laser inside it to that. There are four laser colors available: red, green, blue, and infrared. The colors chosen really depend on the preference of the patient and the doctor. During the treatment, two or three lasers are administered. The treatment lasts anywhere from 60 to 75 minutes, where each laser is given a 20 minute cycle. During that time, the patient is encouraged to relax, listen to a music or relaxation CD, and keep warm. Believe me you are treated like royalty :) As far as the understanding of the treatment, it is increasing the respiratory activity of your mitochondria, which are the organelles in the cytoplasm of your cells that function in energy production. (You didn't know you were going to get a biology lesson today, did you?!) The laser breaks down the toxins in our bloodstream so that it can then be released from your system. This IV acupuncture also has been shown to help improve your immune system and repair nervous system.

So, you are probably wondering what this procedure did for me? I had my doubts of doing it at first. The doctor gave me the contact information of another RSD patient to talk with beforehand. The patient has had a more severe case than me but has seen incredible results with this treatment. It was so encouraging to talk with and hear of this patient's progress! So, I decided to give this procedure a try. I can't tell you how happy I am. The relief I have had in the past few days I have not experienced in the past year and a half. I can actually feel healing begin in my body if you understand what I am saying. I have had little to no pain the last three days. I can feel blood circulation in my feet. Actually, my whole body feels better. My personality is back. I have such joy and hope. Thanks be to God!

Now, what does this mean? I am still using walker, because, if I didn't, I would be in great pain. I am still limiting my activity, because if I didn't, my pain would shoot up, and you would probably have to pick me up off the floor :P I'm still on all my medications, because I would probably laugh or cry if someone told me I needed to stop taking them. This is not a fix all one-time thing; this is a work in progress. But I am so glad we have found something that has given me such relief and possibly healing that we are already seeing results. The Lord has blessed me greatly!

My next IV laser acupuncture treatment is this upcoming Tuesday at 4:15 P.M. Thank you so much for all your prayers and support! Praise our Lord Jesus Christ for answering prayers! Have a wonderful Sunday!

Short and Sweet

2010-10-13T19:37:00.000-07:00

My procedure was very beneficial last Thursday. It reduced my left foot pain. I am so thankful! There was a minor switch... it was only for my left foot and not for my right. My doctor did not want to do a bilateral.

Next on my schedule is an acupuncture appointment tomorrow at 2:15 PM. I am trying a new procedure. Because it is so late, I am will to tell you about it later. I ask you to pray that, if the Lord wills, this procedure will be beneficial and healing to me. If not, please pray that He will give me direction on the next step. I am very hopeful about tomorrow and am exciting about going back to this doctor. The Lord is good and worthy of praise. I have every confidence that the Lord will take care of me and guide me through this! God bless you.

Bilateral

2010-10-06T17:59:00.000-07:00

Thank you for all your prayers on Monday! Let's just say that Monday's appointment was the most pleasant and relaxing doctor's appointment I have had. This doctor's office literally has a calm aurora when you walk in, and the doctor makes you feel so at peace when she is treating you. Now for the treatment, I probably looked like a freak... I had laser lines attached to me from my back to my feet, and my ears had needles in them (for needle acupuncture). Did you know that your ears are subsystems of your feet, that they are somehow interconnected? I didn't. But, but the treatment was so calming and soothing. I had music on, a blanket, and a space heater (plus the lights were off). My right side pain slowly decreased and really has not elevated too much since. I almost felt like the tension in my feet start breaking up or releasing. It was quite amazing! So, my next appointment is Thursday, October 14th. Before that...

Tomorrow at 10:30 I'm having a bilateral epidural procedure done at my main pain manag. You probably have guessed it... that means both legs... tahdah! Yes, it will be just like the procedure I had in August but for both my feet. To serve as a reminder, the doctor injects anesthetic and steroids into the outer lining of the nerves to calm the nerves down. I guess we are "killing two birds with one stone" this time. My pain has strangely been switching back and forth between my right and left feet for several weeks and never really staying in both feet at the same time; we don't understand but that is how it is. So, we are giving this one a try. I'm going to have really numb legs and no real center to stable myself. This will be really interesting :) Thankfully, my mom and dad will be around!

So, if you have a chance to remember me in your prayers tomorrow, I would really appreciate. I hope you are able to enjoy this glorious fall weather. It is such a gift!

Laser Acupuncture

2010-10-04T05:27:00.000-07:00

Dear Friends,

My appointment last Thursday went extremely well. I don't know if you have met a person in the medical profession that made you comfortable within first visit about their competence in their specialty and their empathy towards your condition. This doctor certainly did it. It was one of the shortest first visits I have had and yet one of the most informative. The doctor was able to tell the type of treatments should would try and actually showed me the equipment (really interesting). There was no actual acupuncture done that day by the way.

However, this afternoon at 3:30 P.M. I have my first appointment. We will be doing Laser Acupuncture. Doesn't it sound scary and cool at the same time! It's the same thing as needle acupuncture but non-invasive, and the doctor is showing different colored lasers through the skin. I am told there are really no side effects expect for getting slightly warm under the lasers...hehe! I guess laser acupuncture has worked for other people with RSD. As far as results, I am told that I could feel better immediately, in a few hours, or in a few days. The worst that could happen is that it just wouldn't work. Then we would try something else that the doctor recommended; I will talk about that later. So, this will be my first session!

Thank you for your prayers last Thursday! They were greatly appreciated. Enjoy the sunny fall weather!

Possible Treatment Plan: Combining Eastern and Western Medicine

2010-09-29T14:27:00.000-07:00

I promise to give a thorough update very soon. I have been very "MIAish" lately, but I will make it :) This just came up...I have a very important consultation appointment tomorrow at 3 P.M. This doctor is an M.D., and she is also trained and specializes in acupuncture and similar treatments for patients with pain problems. She was highly recommended to us by people both in and out of the medical field. Based on the past few weeks, my health has been on a roller coaster ride. So we decided to not let things go too far south and seek a second opinion. I had many appointments last week, which, by the way, went very well. I am seeing improvements already. And now we are having this appointment tomorrow. The acupuncture would be in addition to the treatments I am already doing and not replacing any. At least, that's the plan.

So, if you remember, keep me in your thoughts and prayers tomorrow afternoon. I will give you a full update of the past few weeks very soon. Enjoy the lovely fall weather!

Real Quick

2010-09-15T08:09:00.000-07:00

I have been MIA for about a week-and-a-half. I can't seem to kick one of my pain flares. It has been really draining me physically and emotionally. So I would greatly appreciate your prayers. Tomorrow I have an appointment with my orthotist. I have two appointments coming up next week, Wednesday and Thursday, with my Pain Psychologist and doctor. That's all I have for an update right now. I will hopefully have another update sooner. Thank you so much for your prayers!

The Sine Wave

2010-09-04T08:19:00.000-07:00

Well, during this past week I had another pain flare. I am not doing a very good job updating everyone on the front end when these things come up :) My symptoms started Saturday, and by Sunday evening, I was showing sure signs of another flare. So, this past week was spent monitoring my pain, my activities, and my pain medications. This pain flare came relatively soon after my last one in July. I definitely had increased my social activities over the past couple weeks. There were also changes with my orthotics, even though they were good ones. I think one of the main issues is my PT. My PT has been prescribed for my right foot only all along. They have been hesitant to treat anything else. However, when the RSD spread into my left foot again couple weeks ago, I have struggled with my PT ever since. I have not found the "balance" as we have talked about in the past.

With these pain flares, I feel like I'm on this strange sine wave. Remember sine waves from trigonometry? A single sine wave has set characteristics of period, amplitude, and frequency. However, if you start adding sine waves together, the specific parts of the wave start to have their own characteristics. This is how it is for me. I am not on a sine wave with constant ups and downs. The sine wave I'm on is unique and random with a path that can not be foreseen. It might have a plateau for a while, then an up slope, but all of sudden shoots down, next goes up a little, then dips down again, and finally slowly moves uphill again. There's no definite pattern! I guess I have been forewarned about RSD; I just didn't know what to expect. This is when I must cling to my Savior more closely and repeat to myself that His grace is sufficient for me!

Trust in the Lord with all your heart
and lean not on your own
understanding;
in all your ways acknowledge him,
and he will make your paths straight.

Proverbs 3:5-6

Socks

2010-08-26T17:08:00.000-07:00

I am amazed at the difference in how my feet feel by the type of socks I wear! Growing up, I never thought much about them. I would wear cotton socks from Target or Meijer and then become so frustrated when I realized that I had lost a sock when doing the laundry! It's like it decided to walk off while it was being whipped around in the drier :) Well, I've been having quite intellectual conversations with orthotists and shoe specialists about the mechanics of socks. I never knew how much thought was put into the manufacturing of a sock! I am saying "goodbye" to cotton! I've been wearing these Balga socks that are made out of synethic materials. They allow the foot to breathe, wisk away moisture, and regulate temperature. Also, their styles feature differences in support and comfort for your liking. Another sock I am using is Smartwool. Love it! Wool is a natural material that does approximately the same things as the synthetic materials. It also keeps my feet comfortably warm. I was so happy to find socks keep my feet supported firmly but naturally (if that makes sense) as well. I think they will become my "Fall" sock, even though none of the Smartwool patterns will match my clothes (they're a little crazy :) ).

Last Thursday's appointments were very encouraging. My orthotics are finally at a point that I know they are helping. The orthothist placed a formed piece of carbon fiber in each of my shoes. They immobilize my feet; the material doesn't allow my toes and arch to overly stretch, which probably contributes to my pain. I have already noticed a definite difference in my pain and my overall feeling in my feet:) The other appointment was with my nurse practitioner. I don't know if I have mentioned this, but over the past year and a half, she has become a vital and an encouraging part of my treatment. She was very positive and encouraged with the progress that I had made since our last appointment (she always helps me see things in perspective). The plan for now is that I will have two more procedures this fall, two months apart. The next one is in October. Other than that, I will be continuing with my regular treatment: PT, medication, pain psychology, and stimulator.

The weather this week in Michigan is in the 70s and sunny, which is perfect for me. The pain is still in both feet, but it is constant, which is better than varying. I am still rather apprehensive about the Fall with the change of temperature and cloudier days. I have no idea how this change in season will go this year. Last year was so bad; however, I pushed myself with a month and a half of grad school. So I don't know what to expect. It is in the hands of the Lord, and He will guide me.

I came across this verse in my bible reading that gave me hope and comfort and wanted to share it with all of you:

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.
2 Corinthians 1:3-4

Orthotic Update

2010-08-14T08:40:00.000-07:00

My appointment Thursday went better than expected. I met with a different orthotist; he is an old family friend. He had some good suggestions/improvements, and they are proving helpful. We are finding the smallest changes from shoes, socks, orthotics, and materials can effect my pain. I have a follow-up appointment with him next Thursday, August 19th.

I had another programming session yesterday; I actually did the programming this time! It is actually quite interesting feeling the changes in stimulations while I was doing the programming. Hopefully, I did a good job :)

I am going to some friends' wedding today in Lansing. This will be good practice, because in October, I'm actually in a wedding ;)

Have a good weekend! I hope it is sunny where you are :)

Looking Ahead

2010-08-09T09:54:00.000-07:00

I don't know why, but for some reason, this weekend I was coming to terms with (or struggling with) the longevity of my illness (probably because this time last year I was getting ready to go to Western). The day-to-day struggle I can usually handle and keep working at my treatment, but when I start looking at the future, things start looking rather void. My medical team still can't tell me how long my case will take. Their assumption continues to be that the RSD will go into remission at some point because of my age. I had the encouragement from them that I am doing everything that I should be doing. However, I am realizing that I now need to adjust my lifestyle for longterm treatment.

It is a call of faith and trust in our Almighty God, knowing that He only gives good gifts to His beloved. He will guide us through the dark valleys of our lives into the light of His glory. After how last Fall and Winter were, I am very apprehensive about heading into another season. However, I know our Loving Lord will not give me more than I can handle, and He is always there to help with the load. I am trying to setup enjoyable activities for me that are quite flexible. Everything is in our Heavenly Father's hands. He is faithful to His children; His mercies are new every morning. Christ has told us not to worry about tomorrow, because we don't know what tomorrow brings. He provides food and shelter for the sparrows and clothes the lilies of the field more gloriously than Solomon. Yet He loves us more dearly so He says that He will provide for our every need. The Lord is my portion. Amen.

Procedure Follow-up

2010-08-09T09:06:00.000-07:00

I think this last procedure has proven helpful. My walking and overall movement has improved. Overall pain levels have decreased some. The results of these procedures can last anywhere from a couple weeks to several months. So, I guess we will just wait and see. I have a follow-up appointment with a nurse practitioner and my doctor on Thursday, August 19th, and we will discuss the results and what happens next.

This upcoming Thursday, August 12th, I have appointment with my pedorthist. I would appreciate your prayers of this one, because we need to make decisions and have results with this one. I had to cancel my July 29th appointment due to chronic pain levels. Basically, my doctor and nurse practitioner both agree with me that the left orthotic is the main culprit for this pain flare in my left foot. There need to be some definite changes with the orthotic, and my hope is the pedorthist will be understanding and have some good ideas.

Well, I can't believe it is August already. Many people are gearing up to go back to school. I hope you all have a blessed beginning to your week!

Up North Trip Cancelled

2010-07-30T14:17:00.000-07:00

Real quick...my family and I are not going up north this weekend. My grandfather, on my mom's side, was in the hospital at the beginning of the week. So, we decided to postpone the vacation a few days. Then I had a bad pain flare start up Tuesday night, and I have been trying to get through it since. I just need to make it to next Thursday.

We would appreciate your prayers for my grandfather. He is stable now, but we, as a family, are keeping a watchful eye on him :) As for me, I have upped my pain medication and have reprogrammed my stimulator. If I can just keep my pain manageable until Thursday, I will be okay. Thank you for your prayers. God's blessings and peace!

Thursday, August 5

2010-07-27T15:13:00.000-07:00

I wanted to clarify that these "flare ups" with increase pain and "mirror image" pain are normal, so to speak, for the progression of RSD. As long as overall the patient's pain is decreasing or constant and the patient's mobility is improving, then the patient's progression of RSD is heading in a good direction. This is what's going on with me. I am improving overall with minor setbacks once in a while.

As I mentioned in a recent post, I am having a procedure done a week from this upcoming Thursday. I am no "newbie" to these, which I don't know if that is a good thing or a bad thing. This particular procedure is called a Transferammural (spelling?) Epidural. Basically, the doctor injects anesthetic and/or steroids into the outer layer of the nerves near the spinal cord. This will hopefully calm the nerves down and reduce the pain. I had this done on my right side many times last Spring and Summer; now we are trying to see if it will help the pain in my left foot. The procedure will take anywhere from 20 to 45 min. I will be not be conscious for the procedure; some patients chose to be but not me :) The recovery timeline for this is approximately 24-36 hours. During which, I will start feeling the anesthetic working. I have a follow up appointment with the doctor and nurse practitioner the following Thursday.

I have started up PT again and am slowly reaching the level, which I was at before this past flare. My appointment with the pedorthist is this Thursday afternoon. I am hoping that he will agree to making some considerable changes to my left orthotic or have some ideas for a different kind of orthotic, because this one has definitely been a player in bringing on the "mirror image" RSD pain.

That's all the news for now :) The weather has been consistently sunny and warm for a few days so I am enjoying it and hope you are too! Thank you for your prayers and support. God's peace!

Lake Louise Trip

2010-07-24T13:40:00.000-07:00

I am taking my first trip in over a year this upcoming week. My family is traveling up north to our family cabin in Boyne Falls, Michigan on Lake Louise, my home away from home. It will be about a week long vacation, depending on how I do. We will be leaving either this Wednesday or Thursday. While I am very excited about this trip, I am rather nervous and stressed. As I said before, I have not been on a trip of this magnitude for a long time. However, my parents and I thought a change of scenery might do me some good, all that fresh air :)

So I would appreciate your prayers as I prepare for this trip and while I am there. I have tried to come up with an itemized list of prayer requests:

The car travel there and back: I have only been on an two hour car trip recently, and it tired me out greatly. This is a 3 hour car ride. We are planning to take breaks along the way. Also, we travel on back roads for the very last part. I still have trouble with pain due to driving.
That I will remember everything I need, especially things related to medical/RSD. I will be 3 hours from home, and the nearest town is 45 min from the cabin.
The Lord will give me comfort, peace, and calm throughout this upcoming week and a half. I have become very, very accustomed to my living situation at home. Needless to say, the cabin is different. Any change may cause problems with RSD, as we have all seen. There are many more steps, as many as 60 more. Beds/mattresses and chairs/furniture can be issues in new places. Closest hospital or medical facility is 45 min away. No cell phone reception, no internet, which is not necessarily a bad thing. Hopefully, I am overreacting, but I am trying to mentally prepare myself.
The weather is still a huge factor to increasing pain. It is usually cooler up north then in the Lansing area.
That I won't have any pain flares or major pain increases while I'm up there. My procedure is not until Thursday, August 5th when I am back home. I hope that my pain will be manageable until then. I am watching my PT and activity levels closely to see how they are affecting my pain levels for now.

That is all I can remember; I might have more later. I am hoping for a wonderful vacation at the beautiful Lake Louise. I think it will be good to get away for a little while. As I said before, it really is a second home to me. So, maybe this will be a therapeutic vacation for me!? I think we are all trying to squeeze in our last vacations before the fall. Thank you for your continual prayers!

A Thorough Update

2010-07-24T11:16:00.000-07:00

Well, it's been a little while. I didn't mean to be away this long :) The last thing I wrote was the orthotics blog and that I was going to be "on my own," with my dad, for a week. So, overall, the week alone went well. I spent a lot of time in the kitchen making meals and yummy things. (With the amount of time I am spending in the kitchen lately, I should start a kitchen blog. Hmmm...) My dad and I watched the fireworks over Lake Lansing on the 4th of July. I spent several evenings out with my friends. Of course, I had my daily PT routine as well. So, I definitely grew tired over the week and had to pace myself by the end.

As for the orthotics, the right one is working great, giving my right foot support and comfort. Since the beginning of the process, the left orthotic has not fit well on my foot, which is odd. For a few weeks, the pedorthist and I could not quite understand why. My left foot has had a little pain and tightness over the past two months, but I thought it was due to more weight bearing and activity. When the pain in my left foot drastically increased couple of weeks ago, I realized that what I have actually felt is mirror image pain in the left foot. It definitely crept up on me.

So, I have had RSD pain in both feet now noticeably for two weeks. It is making it very difficult to walk, so the walker is back! I started with two crutches, but my doctor and NP preferred me to use the walker. My pain coping skills are down when my pain is in more than one area. Now that I have had the pain in my left foot for more than week, it has become more "normal," but the beginning was very difficult. Also, I am having a harder time accomplishing PT, both home and hospital. They both focus on the right foot so I used my left foot for balance/stability. I don't have that any more. I have already taken one week off from PT, but the more time off, the more you lose. My sleep has been broken due to pain and other RSD symptoms as well. I would appreciate your prayers in these issues.

I had a doctor's appointment this past Thursday. It was decided that left orthotic is a definite culprit in this recent "mirror image" pain flare. So, I have an appointment with my pedorthist this upcoming Thursday afternoon. Hopefully, we will be able to figure out a different orthotic for my left foot. We also agreed that I needed to have a procedure done for my left foot pain. I will give more information about this procedure in an upcoming blog. I have had it before, actually many times, for my right foot. It has proven helpful. This will be performed in a week and a half. Over the past week, I have been working very closely with the Boston Scientific Rep as well to find a good program for the stimulator to cover both my right and left feet. Each program is closer.

I will be writing another update very soon. I truly would appreciate your prayers as I wait through this next week and a half. Thank you and God bless!

Patterns

2010-07-03T14:40:00.000-07:00

I usually try to write an update once a week. This past weekend I had a humdinger of a cold and didn't feel like doing much of anything. I spent the majority the week recovering from it. The cold some how connected with my RSD so that my pain shot up to levels that I have not experienced for a few months now. After a couple days, the pain and cold was under control, but the first few days were not pleasant. So, I think I'll try not picking up any more colds for a while.

In the past blog entries, I have spoken about the random character of RSD. You do not know when the pain spikes will occur. Each individual has a different experience with it. The characteristics of RSD can change as you progress with your case. Etc. During the past weeks, I actually have started to see some small patterns in the misty blur of my RSD. Yes, I wish these recent relapse had not happened, but I think they might have revealed to some helpful clues for the future.

In Spring and Fall 2009 and Winter 2010, the RSD pain overwhelmed the rest of my body each day causing a pain-induced illness. I felt like I never knew what was going to happen next, or even what was happening in the present. I think I haven a better handle now on the situation. I am realizing that I need my body to recover from a big activity or from a pain flare. The constant pain I was experiencing in the past never allowed my body to recover from the past pain. The idea of slowing down might be simple, but my normal activity level is much lower than the average person so I need to cut back even more when this occurs, that can be very difficult to judge.
Because my pain has been more manageable for a little while, I am actually able to recognize specific symptoms before the pain flare, or relapse, that I had felt in the Fall and Winter, but I do not experience the overwhelming sickness. Several months ago, I thought I might be coming down with something, or I just felt like that all the time. Now, I will be able to sense these in the future and help prepare myself before a relapse.
As far as physical therapy, I am beginning to understand which exercises will cause a temporary pain flare and which will cause a more prominent one. Then I can make a better judgment on how to progress through Phase 3 therapy.
As always, weather is a major factor with my pain. The recent thunderstorms in Michigan have taken their toll on me. At this point, all I can do is prepare myself for a day of higher pain and rearrange my schedule.

This upcoming week, my main caregiver (Mom) and my siblings are up north. My dad is around, which will be great to have his company and help. I think it will be a good test for me to see how I do at "playing house." I will still have a chance to do PT, get my own meals, go to my weekly activities, do the household duties that I can do, and enjoy lake life :)

I hope you all have a fun 4th of July weekend, wherever that may be! Thank you for keeping me in your prayers!

Orthotics

2010-06-21T11:12:00.000-07:00

Several months ago, I began talking with my therapists about the need for good orthotics. My right foot requires as much support as possible as we continue to strengthen it through physical therapy and activity. Also, there is a possibility that an orthotic could reduce the RSD pain. So, I had an appointment a few weeks ago with a Pedorthic specialist, who has worked with RSD patients. Last Thursday, I picked the orthotics up. They are made of a special kind of soft but firm material that forms and cushions to your feet. It allows the feet to feel secure, reducing the pressure on them. The arch of orthotics can be built up over time as I will be able to tolerate it. This is definitely a work in progress, another form of desensitization. There is always a transition for me of trying to figure out whether I'm feeling RSD pain or pain caused by something "new". I will be probably meeting with this specialist several times over the summer as we customize my othotics. I already have another appointment set up with him this coming Thursday.

Please pray for me as I work through this transition. I am finding that any sort of change, whether small or large in my schedule, can affect the RSD. Now that I am aware of this, I am trying to work my schedule to make sure I don't have too many changes in a short amount of time. Also, the weather is still a huge factor in causing a pain increase.

Thank you for your continual prayers! Overall, I am heading in a good direction :)

Baby Steps

2010-06-10T14:10:00.000-07:00

As I look over the past couple of weeks, I still do not know what exactly caused this past relapse. It could have been the weather; Michigan decided to have its rainy season later in the Spring, instead of earlier. Or, possibly, even though I tried to be more careful monitoring my physical therapy and activities, it still was too much. There also could have been a delayed effect of weeks worth of the activities building up, and my nerves finally could not keep up. It probably was a combination of these. I will just have to be content of moving from here and taking smaller steps forward.

I had another programming session for my stimulator earlier this week. I am back to both home and Phase 3 hospital physical therapy, but I am not to the level I was before the relapse. My pain is again manageable; however, I am easily tired. I am seeing more clearly that I will essentially need to take baby steps through this recovery, even on the good days, now that I know about the delayed effect. This means those little victories will be just as important, because they will bring about the big ones.

Call to Pray

2010-06-03T10:16:00.000-07:00

Colossians 4:2 says "Devote yourselves to prayer, being watchful and thankful."

Will you join us once again in a concentrated effort to pray on Amy's behalf? The last few weeks we have seen great strides in both kind and amount of activity for Amy. However, in the last ten days her pain has slowly been increasing, and by this past weekend she was noticing more of the RSD symptoms that have been greatly reduced for so long now (higher pain= less mobility, loss of appetite, interrupted sleep, foggy thinking). The overall consensus is that she is doing more than her body is ready to do. Finding the balancing point is very tricky. So, she is pulling back to the first level of daily basics until the pain is under control. Home PT, her daily walks outside, and PT at Sparrow are on hold. Hopefully with a good amount of rest and lots of pain management, she can begin to reintroduce her daily activities very slowly.

Please pray against discouragement and for the pain to subside. We are watching and waiting, thanking God for His love and presence in our lives.

The Esperance Rose

2010-05-19T08:07:00.000-07:00

I thought I would change things up a little this week and take a look at what the past months have been to me. While I have not reached my full recovery, I know where I have been and see some light in the tunnel ahead. It is almost like these past few months have been "my Spring". I have such hope, joy, and peace during this trial. I am very thankful for the slower pace of life and for this solitude; it is truly a gift in this day and age. The Lord has also given me a rekindled appreciation for beauty. During my daily walks, I have watched the earth awaken again and burst forth from tiny buds to full bloom. How wonderful is our Creator's great design!

As I look at nature's beauty, I begin to see the resemblance between the cycles of nature and struggles in our own lives. How there is a need for "little deaths" in our lives in order for seeds to be sown, and next the rains falls. Then, the new, tender sprout starts to grow, and before long, one will see tiny buds. Finally, gorgeous blooms will form.

During my recovery from surgery, I received many flower bouquets. A particular one contained a rose that I kept being drawn to its exquisitely beautiful bloom. Only until recently I found out its name. It is the Esperance Rose, meaning hope. While I do not think the person who gave the bouquet knew the name of the rose or its meaning, I thought what a wonderful gift to have this "hope" rose in my room while I was recovering. I would like to describe this beauty to you. The rose comes from South America, possibly Ecuador. It is a bicolor rose with light lime green guard petals. The outer petals are cream (they sometimes have dark pink tips), and the inner petals are light pink. It is a very dense bloom due to there being anywhere from 30 to 50 petals, and its diameter can be from 5 to 7 inches. The bloom opens up into a precious star, where the petals have somewhat ruffled edges. The vase life can be two to three weeks. As I watched this bloom unfold, I continued to be so amazed at the delicacy and beauty of this flower.

I have realized that, in a sense, I am, or this trial has been, somewhat like this flower: a tiny bud that is just beginning to open and will continue to unfold, showing forth the Lord's splendor. The Lord's mighty yet gentle hand has been at work to create good as well as beauty through this situation, and there is great hope in this.

Phase 3

2010-05-07T09:15:00.001-07:00

Beginning this past Wednesday, I made a transition in Physical Therapy called "Phase 3." Sparrow Hospital offers this therapy option to patients that no longer need personal therapist supervision but still need physical therapy. My therapists suggested this option to me about four weeks ago. We both agreed I could continue my therapy under the conditions of Phase 3, because I have been in physical therapy for a year now and I have covered all the stages from barely being to walk to walking with a cane. The weight-bearing, strengthening, and balance exercises will all stay the same; Phase 3 does require me to do more PT at home though. I won't have any one-on-one time with a therapist, and there will not be any evaluations. My therapists will still check in with me to make sure I'm doing okay, see how I'm progressing, and if I have any questions. The other therapists are available for help as well. My original therapists will still evaluate my progress throughout Phase 3 until my final discharge, because they know my case. This is a huge step for me. I have to admit that I was nervous and a little apprehensive about this change beforehand. One challenge with RSD is that I have an even harder starting new things, whether small like starting a new PT exercise or big like attending grad school last September. However, I knew the Lord would give me the strength to make this independent step. I have had two days now of going in on my own and performing my therapy activities. It is going great!

Other than that, the stimulator is working smoothly. When the specialist from Chicago programmed it in April, I think we finally found a program that works. My pain has rather leveled out again. If it does increase, the increase is due to over-activity or weather. I am slowly but steadily my activity level. I am enjoying going to church every Sunday and a Christian young adult group once a week. I am loving being in the kitchen more. Weather is still the main cause for my increase in pain. At least in Michigan, I think April and May weather switched places, and we are getting a ton of rain and cold weather right now. Hopefully, sunny, warm weather is around the corner.

I truly appreciate your prayers, encouragement, and support. My recovery keeps moving in the right direction. The Lord is faithful and true.

Vertigo

2010-05-03T16:07:00.000-07:00

I have been struggling with vertigo since Friday, April 23. I was not diagnosed with it until this past Saturday though. For a while, I thought one of my pain medications was the culprit. Now I know that there is a stomach flu going around that affects the inner ear, causing vertigo. This is the first I have had it. The experience is not as romantic or thrilling as Hitchcock presents this sensation in his movie, Vertigo, with Jimmy Stewart and Kim Novak. I have felt "out of sorts" and nauseous all week. I have grabbed hold of a wall, a counter, or a towel bar, because I felt like I am falling or I am losing my balance. Let me tell you vertigo and crutches do not go together at all :) My primary doctor put me on medication to counteract the vertigo, and so far it is helping. I am laying low due to the side effects of the vertigo and the medication; the concern is then how this will effect my progress with the RSD. Hopefully, the symptoms will clear up this week.

I have more updates for you concerning P.T., but I will have to write it later on this week. Thank you for your continual prayers!

Pain Decrease, Gym Shoes, and Crutches

2010-04-21T07:18:00.000-07:00

Updates:

1. The pain in my right foot is still decreasing

2. I wore gym shoes for the first time in a year

3. I have been officially switched over from a walker to crutches

Yes, the pain has continued to decrease in my right foot this past week. I have thought of it as a circle where the center is the beginning point of no pain and whose area continues to expand. The stimulator is definitely doing its job now. We are definitely starting to think that there is healing going on with the nerves. So, praise God! Thank the Lord!

I remember the first time I tried on gym shoes after I was diagnosed with RSD. It must have been in May or June of 2009. The pain was so excruciating that I could not speak, I was in tears, and I almost fainted. My mom literally had to sit me down before I fell over. Well, a year later and after several days of just putting on the gym shoe to desensitize my foot, I could tolerate wearing a gym shoe. Now that is the only shoe I prefer to wear. I am needing the full support all around the foot from ball to arch to heel to ankle. I think back to when I could not even wear a sock, then I could wear a sock and a slipper, after that it was Keens, next I was able to tolerate Earth shoes and Bikenstocks, and now finally gym shoes. Well, now that I am weight-bearing more, I am so glad to be at this point.

All through my physical therapy, they have never tried to push me more than my own comfort level. They would allow me to change from different walking aids as I felt needed. However, they would encouraged me to do so when they thought it was time. Well, it is that time. My walker is really no longer in use, except on really bad days. I have been using one crutch in the house and for P.T. visits, and then I use two crutches for all other errands and activities. This just increases my weight-bearing. I am tolerating it alright. Sometimes it seems rushed, but there is always an adjustment period. While I have decreased pain in my foot, I have had increased pain in my knee due to more weight-bearing through my right leg. I am not tolerating the knee pain as well as I thought though, because it is new pain. This knee pain can be thought as a good thing in a way, because we know I am bearing more weight through the right leg. For a while, I was bearing most of my weight on my left leg. We now know that I am bearing mostly equal weight through both legs.

As far as P.T., they are pushing me right along. Still much of it is strengthening and weight-bearing but we have added some balance exercises recently. They wanted me to start up working on the Wii at home. It gives me good feedback on how I'm progressing. In the past, we actually have seen a significant increase in balance and weight-bearing at P.T. with the help of Wii.

For an update with medication, I have been able to decrease a little on my pain medication. I am still on full doses of my nerve pain medication. I am realizing the wisdom I will need to wean myself off the medications. This will take patience and timing. I know it will be a couple months process. This whole recovery is a balancing act.

Thank you so much for keeping me in your prayers. I think we are heading in a right direction. The Lord is faithful and good!

Healing

2010-04-16T15:22:00.000-07:00

I have been contemplating how to write this entry for a few days now. I wish I could meet with each of you individually to express my amazement, the goodness of God, and my gratitude towards Him. I just have to say God is so good. I have been in a state of joy and thanksgiving these past few days.

So this is what happened. Monday night I finally fell asleep although I had the familiar raging pain in my right foot. I woke up Tuesday morning with a sense of relief that I have not experienced in a very, very long time even before the SCS trial. When I woke up a little more, I realized that the deep, internal, excruciating, gnawing pain in the arch of my foot was GONE. JUST GONE! At first, I thought I had by accident left the stimulator "on" the last night, but I knew I would have felt and it didn't cover that much pain. None of my therapy, except possibly the stimulator and sometimes the injections, have been able to help with this pain. I have thought that this is where the root of the problem or the initial injury occurred, which is causing the RSD. Also, I had no pain in my knee. It was a miracle. I believed the Lord was telling me, "I am healing you." And the healing has begun. Now, I have to say that I still have pain in two places in the medial (towards the heel and ball of my right foot) part and my right hand. However, they are localized and more external than the pain that has subsided. I kept wondering if the arch pain would come back, but it's day four and has not. The knee pain did come back last night (I am also feeling it in my right arm). I pushed myself too hard yesterday, and as result, I am feeling it today. (It is always that struggle of balance.) A cold front also blew in last night so I'm sure that is also effecting the pain. Anyways, I think we have turned a corner. Or, at least, the Lord has given me a reprieve. I am thanking Him for this relief. I was talking with my mom yesterday, and we were agreeing that any time my nerves are not sending pain signals, this will enforce the normal character on the nerves and hopefully allow them to begin to heal. I don't know if the stimulator has had anything to do with this sudden decrease in pain, or it is solely by the grace of God. I know God can work through this technology to use his power of healing too.

As for the yesterday's appointment, I obviously had good news for them. I walked in with a smile on my face and one crutch instead of a walker (I have been able now to use either a walker or one crutch depending on the day.) As for the lead migration, both my doctor and my Boston Scientific both agreed that leads could not have migrated. If they did at all, it would be downwards, which would actually be helpful to my stimulation problem. I did not even have to get an x-ray. They supported me about using it only a few hours a day due to my overstimulation issue. I have a better understanding of the purpose of the stimulator and especially how it works with my body. It is more used as a therapeutic device more than something that becomes a part of you. The stimulator is there when I need, but it doesn't necessarily need to be constantly "on". For me, I can handle only a few hours a day due to my problem. It seems, though, the stimulator can still be helpful with only being "on" those few hours a day. Now that it seems that the pain is starting to decrease, the next step will be to start weaning myself off the medications. I have already began with one of them, which is a regular pain medication. The other two will be a couple months process, and I will start in a little while. I will have to carefully regulate my pain levels and watch my reactions. My pain levels could drastically change as my P.T. and activity levels increase. I will continue with P.T. as is. Overall, the appointment was encouraging and helpful.

So, what now you might ask? I am still taking easy and not ready to jump into anything. I am still in recovery mode. As I said above, I am still in pain. However, having that one spot free of pain is such a blessing. This will allow more progress in therapy to happen. I can bear a little more weight and have a little more energy. I am spending a couple (happy) hours a day in the kitchen. All the time, though, I have to keep in mind balance: how to move steadily along without pushing myself too much. Also, the weather can still get to me especially cold fronts. BUT this relief has given me hope and strength to keep going. I think I have a few months of recovery ahead of me, but the healing has begun!

Big Bump with the Stimulator

2010-04-10T11:58:00.000-07:00

As some of you heard from Di's Facebook message, over Easter weekend something happened to my stimulator where it was overstimulating my entire body. My body went into shock. It also was elevating my body temperature and causing me to feel very sick to my stomach. I had to turn the stimulator "off" for the rest of the day. I turned the stimulator "on" again for the night to see if it was just a fluke. However, I woke up in the middle of the night even more sick and my nervous system was in shock like before. So, the stimulator went "off" and stayed "off." I met with my Rep. from Boston Scientific Monday afternoon. He decided that I needed to see the specialist from Chicago, who was visiting on Thursday. Between then and Thursday, I only tried to turn "on" the stimulator a couple of times, but my body could only tolerate it for one hour at a time. Because I didn't have the stimulator to help and the weather was cold and rainy, my pain escalated over the week. My activity level definitely decreased over the week; all I could do was try to cope with the pain. It is amazing how much pain the stimulator is masking! (I am also seriously considering moving to a place that is warm and sunny all year around once this is all over :) )

When I met with the specialist on Thursday morning, we discussed some possibilities, which might have caused this overstimulation of my body. The first is the theory of Neuroplascity. This just means the nerves still "feel" the stimulus for a little while after the nerves have stopped being stimulated. This is why I switched to a cyclic program (the stimulator turns "on" and "off" automatically) a few weeks ago so that my nerves would not become overstimulated, but I might need to be turning "off" the stimulator more, even though it is helping so much. The second possibility is lead migration, which is a common problem with spinal cord implants. The specialist could visualize from his computer program that the leads have moved relative to each other since the past x-ray. This can cause the stimulation that I feel to change. Sometimes they can reprogram the stimulator to work around this issue. If this does not work, then a procedure is done to reposition the leads. It all depends on how much the leads have migrated from their original position. So, on Thursday, the specialist was able to program the stimulator so that it gave some relief. However, I am still not able to keep it "on" more than a couple hours at a time due to discomfort. Hopefully, within the beginning of the week, I will be able to have a new x-ray to show the true position of the leads. I have a monthly check-up with my physician on Thursday, April 15th. My regular Rep. from Boston Scientific with be there also to possibly do more programming. I hope I will receive some guidance and insight at the appointment.

On a more positive, P.T. is coming along very smoothly. I couldn't do much last week, because of my pain levels. However, I did not loose much either. They keep me working with weight-bearing and strengthening and are starting to increase old exercises or add new ones on my good days.

Thank you all for your continual prayers and support. They are greatly appreciated. I keep pushing forward through this trial with hope and faith.

Balance

2010-04-01T08:08:00.000-07:00

The new stimulator program is working great! I am able to keep it "on" for 24 hours almost every day. So, I am definitely starting to see a difference in my pain level. My pain is there, but it is not as debilitating as in the past. I am using my walker less in the house and walking more with one crutch. I definitely have more energy than I had a few weeks ago. On my bad days, I take care of myself and keep the pain down as best I can. Then, on my good days, I try to keep doing the same activities I've done the days before so that I can keep an even keel. Finally, on a great days, I add a small activity whether it is doing a small load of laundry, cooking something, running an errand with my mom, dusting, or just adding 10 feet to my walking routine :)

The main challenge over these past couple of weeks and the rest of the Spring is finding the BALANCE between pushing myself forward and not over exerting myself. Only I can tell where my limit is. I need to be able to slowly increase my stamina without increasing my pain level, which can be rather tricky. It goes back to the concept of desensitization of nerves and the constant training of what should "feel" normal and not cause pain. Overdoing an activity or multiple small activities is painful and exhausting. However, it is a learning processing. I am always pushing that boundary trying to see where my energy level and physical ability are. There is no timeline on my recovery; we are taking one step at a time. Any progress is good progress!

Right now, one of my other hurdles this Spring is the weather, especially because Michigan weather is temperate, and I don't have any control over it. Any change in the barometric pressure can cause an increase in my pain. It is not as bad as the Fall and the Winter because my stimulator is helping, but I can still be out for a day due to a rainstorm. Or, during a cloudy day, I just don't move as well.

I am steadily progressing in physical therapy. They are working mostly on desensitizing, motion, weight-bearing, and strengthening. We will be finishing up our first Spring session on Monday and will be needing insurance approval to keep continuing therapy. This was the main reason I did not have therapy in the Winter so that it will be easier for me to be approved now for more therapy. So, if you could, please pray that I would be approved for more physical therapy into the Spring. There is no doubt that I definitely need it :)

I hope you all have a blessed Easter weekend. It is so nice to have sunny, warm weather during the Holy Week. Christ is Risen! He is Risen, Indeed!

Spring is here in Michigan

2010-03-18T11:42:00.000-07:00

Spring has finally arrived in Michigan :) The lake has thawed. I have had many lovely walks outside this past week. I think the warmer weather is definitely helping my spirits and probably even improving my health.

I have had four P.T. appointments to date and am handling them decently. I can be sore afterwards, but I am not as wiped out as I was last week. My therapists are concentrating on desensitization and weight bearing. I am walking outside almost everyday in this glorious Spring weather. I have also started up doing Pilates exercises on the days I have P.T. off to strengthen my body. I can definitely see a slight daily increase in my energy level. I am starting to spend more time on my feet while getting ready in the morning, in my favorite room in the house - the kitchen, and walking. By late afternoon, I am definitely very tired. So, I take it easy the rest of the day. I am always trying to find that fine line of balance. I want to slightly push myself to see what I can do, but I don't want to overdo it - my foot will start yelling at me, and/or I will have a sudden loss of energy.

After a few days programming the stimulator, I thought I had found a stimulator program that would work for me. After a week of manually doing it, I was meeting with the Boston Scientific Rep. yesterday to set it up so that my stimulator would do it automatically. Unfortunately, there was a miscommunication originally, and I found out Boston Scientific computer program will not be able to set up the specific stimulator program that will work for me. So, I have to start over again and find a new program that works. Hopefully, things will be settled by next week.

I did my first kitchen project yesterday. It had been several months since I had worked in the kitchen. Man, did it feel good! In the spirit of St. Patty's Day, I made a fresh Tomatillo-Avocado Salsa. Except for the red onion, every ingredient was green! The kitchen smelled wonderful, and I have to say, the salsa tasted delicious :)

I have to share with you a letter I received this week. I had a good laugh when I read it, because it perfectly describes this past year. I hope you enjoy it:

"I heard your whatchamacallit got all out of whack and discombobulated. It's a good thing they have those thingamabobs to fix your doohickey. In other words, get well soon."

Haha! I started thinking that while the medical field has some idea of what RSD is, they still don't fully understand it. Also, most of the general population have never heard of RSD and probably would have a difficult time understanding it. Then, there is the stimulator, which is a complicated thing in itself, whether or not you want to learn about it. Sometimes, I want to throw up my hands and stop trying to figure what is going on myself. At least, now I am on this side of things.

Thank you all for your prayers! I hope you are enjoying the Spring weather. Thank God for warmer weather!!!

Stim Project and P.T. Start Up

2010-03-10T08:48:00.000-08:00

Thank you for your prayers for Monday's appointments! We met with both my doctor and the Boston Scientific Rep Monday afternoon. It was confirmed that everything looked fine, actually really great, in the x-ray. They both explained the x-ray in detail, which put me at ease. Most of the appointment consisted of the Rep. and I working together, trying to program the stimulator. It is a rather long process, because he is relying on my feedback while he is configuring the program on his computer. I knew this was going to be a several week process in order to find a few ideal programs for me, because the leads will continue moving until I am fully healed. It is still a major adjustment even now learning to use the stimulator at home. The Rep. and I are now trying to figure out if I will need to have a specific type of program. So I am doing some research at home this week and as well as the regular adjustments. It's rather nice to have a project.

I started P.T. yesterday. It wiped me out. I didn't realized how unconditioned I had become over the past 3 months, plus the surgery. I know they will are going to get me up and walking. There will be a lot of the same exercises and routines, but it will be increased plus new exercises. So, I will going 2-3 times per week now for the Spring. I'm glad that I have the stimulator and the Spring weather this time around :)

Progress Temporarily Stopped

2010-03-05T14:29:00.000-08:00

My progress came to a halt on Tuesday. During a programming session with my Boston Scientific Rep., I was feeling no stimulation in the places that I needed it and then stimulation in the wrong places. Also, I was also feeling a different kind of pain in a new area that we think is caused by the stimulator. So the stimulator was turned "off" on Tuesday and has stayed "off" since then. We are meeting with my physician and my rep on Monday concerning this. There are many "unknowns" right now, and we are trying to wait patiently through until Monday.

My family and I ask you to pray hard these next couple days and for Monday's appointment with my doctor and my Rep. Please pray for that there is good communication between us, that questions are answered, and that God will guide us through this next step.

The Second Week

2010-02-28T06:42:00.000-08:00

It is two weeks post-op. The second week started off with three of my family sick with bad colds. So I tried to keep myself quarantined in my room as best I could to keep myself healthy. I think it was a success. I was able to walk and do a few more activities myself; however, rest and sleep still were greatly needed.

My doctor's appointment on Friday again affirmed that my incisions are healing very well and also okayed starting up Physical Therapy again. My stimulator had been on a full week at that point. I had another program setup for my stimulator with the Boston Scientific Rep. Overall, the stimulator has given me relief over the past week. It has been a rather BIG adjustment having this assistive device working within me.

To answer many of your questions, yes, I do feel the sensations of the stimulator. Some people thought I did not. You know those electric massage chairs? Well, that is somewhat how the sensation feels like inside. It is tiny electric pulses surging through my nerves. The whole point of the stimulator is for me/my brain to concentrate on the electronic pulses that sent through the nervous system instead of the pain. Now this will take time for this substitution to work. I hope this kind of makes sense now.

The next will be to start physical therapy on March 9. It will be slow at first since I will be still be in the 6 weeks of recovery. I also have another follow-up appointment with my doctor in 4 weeks and a few appointments with the pain psychologist in the next couple of weeks.

Thank you for all your prayers, support, and encouragement! Also, all the cards and flowers!

Slow and Steady

2010-02-19T18:49:00.001-08:00

Remember the fable about the tortoise and the hare? Slow and steady wins the race? Well, Amy's "off to the race". Staples are out, and the stimulator is on!

The question everyone is asking: Is she pain free?

The answer is: No!

The second question: Why not and when?

The answer is: That's two questions.

She is feeling a slight reduction in pain in her left foot and leg, but it has taken several hours to get to that point. Going in the right direction, though! The programming is going to take many adjustments over the next several weeks.

Here's the plan:

Limited movement over the next four weeks-no bending, no twisting, no lifting anything heavy. The leads need to remain in position in the spinal column until they're completely settled into place with the scar tissue.

Next Friday, another appointment with the doctor and the rep-discussion to be around physical therapy (when to start and a plan for gradual re-entry into pt since she hasn't had any for 2 months) and more programming of the stimulator.

We've turned a big corner, with the surgery a week behind us, no infection in the incisions, the stimulator on, and initial programming begun.

Persevering in the race... slow and steady... remembering our faithful God who does no wrong, (Deuteronomy 32:4).

Memorable Birthdays

2010-02-18T15:32:00.000-08:00

So, how does this sound? Chicken McNuggets and "Chuck" for lunch. A long nap in the afternoon. And for dinner, smoked marinara spaghetti from Old Chicago, Sweetie-liscious Pie (peach, blackberry, blueberry) and "Double Indemnity" with Fred MacMurray and Barbara Stanwick. There you have a picture of Amy's 24th birthday :) Somehow Amy's 9th birthday spent on St. Petersburg beach with Uncle Otto and Aunt Christl would feel really good right now-sunshine, sand, and water that tastes like pretzels (that would be Sam at 4 yrs. old). This is birthday week at the Johnson's-Amy on the 17th, Isaac on the 20th, and Esther-the 21st!

Amy's made decent progress through the week, with only one blip in medication that resulted in a very uncomfortable 8 hours. Other than that, the incisions are healing, she walked the length of the 2nd floor hallway with her walker today, and had her hair washed, a la mom's salon.

Tomorrow we meet with Dr. Nair. Please pray with us for wisdom on his part. Please pray for a spirit of encouragement and endurance on Amy's part. We are not without hope, but continue to look to God for strength and peace each day as we walk through this. Thank you for your gifts, flowers, meals, and cards that keep pouring in. Amy liked all the suggestions on facebook to enjoy cake and icecream on her birthday. Haagen Daaz raspberry sorbet and out-of- this- world chocolate cake from Sparrow's lobby cafe are on the menu!

FAQ's

2010-02-16T08:49:00.000-08:00

1. How is Amy today?

Slow, but steady, is the progress report today. She slept well for the first half of the night, then in and out until morning. A little more appetite and keeping everything down. We seem to have figured out a better way to synch the meds, so the nausea doesn't fluctuate as much. Pain is tolerable.

2. Why does she have to wait so long for the stimulator to be turned on? It takes time for the leads in the spinal column to begin to settle in and for scar tissue to hold them in place. The incisions need to be completely healed and the staples removed. Thus, the 1-2 week wait.

3. What will happen when the stimulator is turned on? Will the pain be gone? Our hope is that the pain would be gone or significantly reduced. The trial in December showed very good response on Amy's part, so we are very hopeful.

4. What does the stimulator do? It generates signals into targeted places in the body that block the pain signals before they reach the brain. That is why the placement of the leads was so critical. The target area for her is her right foot, right leg, right arm and hand. By controlling the pain in the right side, especially in her right foot at the point of the initial injury, the pain on the left side may go away on its own, but it too can be controlled because of the second lead.

5. Will she have control over the stimulator? Yes. After the stimulator is turned on, she will have a remote control with a wide range of programming capabilities. She will be working closely with the Boston Scientific rep at that point.

There you have a primer on spinal cord stimuation. Our primary focus and goal for this week continues to be keeping her free from infection with manageable pain until her appointment this Friday.

PostOp- Olympic Style

2010-02-14T18:18:00.000-08:00

It's been an "olympic" day-a bit rough in the start, some bumps along the way, and a better finish. However, the training for this one was on the minimal side, and the rewards don't come in medals :)

We've mainly been working through nausea issues because of the high level pain meds, but a call to the on-call doctor resulted in a well-working anti-nausea med that allowed Amy to intake more than a sailor's diet (water and saltines) and be able to enjoy a little chicken noodle soup and applesauce by this evening. Small comforts, great reward.

It's been a day of rest, and all the activity in Vancouver has provided hours of interesting distraction.

Our goal for the next 24 hours? A balancing act of meds, liquid and food intake, limited movement, and a whole lot of rest.

Tonight, she's on page 479 of Les Miserables- a good sign that she feels like reading again. It's a book of "olympic " proportions, begun last summer and not quite half way through.

As we close tonight, we are so grateful for the prayers, love, and support that continue to be poured out on our family through all of you. Thanks to you, our "team", out there cheering Amy on!

Around the Corner

2010-02-13T14:49:00.000-08:00

You know what it feels like to wait for something, and the waiting becomes the "thing" instead of the "something" that you're waiting for? It's been a very long wait for Amy, and if time could stop, it felt like it almost did for a while this week. But, here she is, post-surgery!

So, an update of today's events:

2-1/2 hours in surgery

2 incisions

1 abdominal binder for the next 4 weeks to control movement in the spinal column

successful implantation of the stimulator and the leads

lots of pain med :)

We were surrounded by a wonderful team, most of whom we knew personally through Marty's affiliations at Sparrow-everyone from the anesthesiologist to the surgeon that teamed with Dr. Nair to the nurse named "Kermit" (just like Grandpa Morgan), the x-ray tech, and the valet. The doctors said that she did an incredible job throughout the surgery communicating with them as they needed, and felt that it could not have gone better.

So...what's around the corner?

This will be a week of healing for the incisions.

Friday, she has her post-op visit with Dr. Nair. There is a remote possibility that the stimulator would be turned on if the incisions are healed and the Boston Scientific rep can be there to turn on the device. More likely, it will be in two weeks.

What will it be like for Amy when the stimulator is turned on? We'll turn that corner when we get there.

For now, will you pray with us for healing? for living through the pain for a little longer until the stimulator is turned on? for continued confidence and encouragement when we don't know exactly what is around the next corner?

Praying for strength every morning, knowing God's grace is sufficient throughout each day.

Surgery Tomorrow

2010-02-12T08:26:00.000-08:00

Everything finalized later this week with the doctors, and the surgery is a GO. Amy has recovered from her infection, is in good spirits, and is ready for tomorrow!

Surgery Date: Saturday, February 13

Location: Sparrow Hospital

Arrival: 5:45 A.M.

Surgery Begins: 7:45 A.M.

We'll keep you updated tomorrow by blog or Facebook. Thank you for all your prayers and support!

Pressing On

2010-02-05T11:24:00.000-08:00

From this morning's reading in Isaiah 40: "...they will run and not grow weary, they will walk and not be faint."

This brought to mind a picture of Amy-how physically trying this week has been, and how furtively we continue to hope for healing so she can once again walk and run.

Good news first...the infection that delayed her surgery is gone. Praise God!

Difficult news next... another unrelated infection has really brought her down this week. She's struggled with fever, increased pain, and literally feeling faint when she walks. After seeing both her primary doctor and the doctor from the pain clinic, the consensus was to begin a stronger antibiotic to see if she can turn the corner on this infection. Dr. Nair, who is scheduled to do her surgery on the 13th, wants her to be at her optimal level, mentally and physically. If she feels worse by Monday, the surgery will be postponed until Feb. 20. If she's improving, then the 13th is still the plan. It's a relief to know that postponing would only mean another week, but it would also mean that two other doctors would be doing the surgery. Amy's desire would be that Dr. Nair would be the one doing the surgery, since he did her trial and has been working with her 95% of the time since last April when this all began.

Will you pray with us that the current antibiotic will work well enough against her current infection and any others that could surface between now and next week? We are so close, once again, to the point of surgery. We are so grateful that God never grows tired or weary, and he gives strength and power to us who are weary and weak!

The Battle

2010-01-28T06:11:00.000-08:00

A few updates from the home front:

Amy's surgery has been moved up to Saturday, February 13. Countdown is sixteen days. She will see Dr. Nair next Thursday, Feb. 4 for final questions.

She has tolerated the antibiotic fine, and the infection appears to be under control. This is a huge praise-thank you for praying. She'll see her primary doctor next week for follow-up.

She is in a very high level of pain, especially in her right foot where the initial injury happened. Her foot has become very stiff, and it is painful to walk even with the walker. She's continuing with her home PT routine, but it is becoming more difficult.

Our biggest concern today is that she is fighting a sore throat and generally feeling like she's coming down with something, and the RSD just complicates it all as her nervous system reacts in abnormal and hypersensitive ways. Isaac has been very sick this week with respiratory flu, high fever, cough, etc. We've quarantined him as much as possible. Will you pray with us that Amy can fight off whatever is hanging around? Thanks for joining with us. Our deepest desire for her right now is that she will be healthy and physically ready for the surgery on the 13th.

The Endurance

2010-01-21T06:52:00.000-08:00

As most of you have heard at this point, Amy's surgery was cancelled because of an infection that showed up in her labs Tuesday afternoon. While this definitely took the wind out of all our sails, we are very grateful that this was discovered prior to surgery. We all feel incredible peace that she was not in a position of being at greater risk for complications post-surgery.

The new date for her surgery is Friday, February 19. While this seems very far off, she will continue with her daily PT routines at home. She's got her 20-lap path well trod on the first floor, various times for heat therapy, and Wii Fit has added a different pt option, mostly for balance. Our biggest prayer right now is that she will be able to take the full course of antibiotic without ill side effects, and that the infection will completely clear soon. Please pray, too, for her as she deals with the pain 24/7. She wins the award for a spirit of endurance and tenacity in the face of this trial.

We are so grateful for all of you-your support, prayers, cards, meals, and outpouring of love to Amy and our family is overwhelming. Thank you for helping carry the yoke.

Delayed Relief

2010-01-14T17:10:00.000-08:00

At my pre-op appointment earlier this week, my doctor told me some news that rather made the light at the tunnel seem farther away again. I guess that when they implant the permanent stimulator they wait to turn it "on" for a couple weeks in order to let everything settles and your body heal. It all makes sense, but it frustrates me that they did not tell me this a couple weeks ago. So, I am having to readjust my thought process to actually be in pain, actually more pain (due to the surgery) for a couple weeks longer. This was a hurdle I was not expecting to encounter.

I think I have forgot to mention in the past that the surgery is outpatient. It is almost exactly like the one I had done for the trial except now there is the addition of the implant. So I am already familiar with the some of the procedures. I will be able to come home probably in the evening if all goes well. I will be able to recover in my own home instead of an unfamiliar hospital bed. The main concerns will be infection at the incision sites and rejection of the implant. Most people recover within 2-3 weeks of the surgery and that's when they will turn "on" the stimulator.

During this pre-op week, I am having my good and bad days; my pain is between moderate and severe. I am still not consistently sleeping well at night. My increasing stress due to the surgery is probably not helping anything.

I truly appreciate your prayers right now. They are carrying me through this trying period. God bless!

It's Official!

2010-01-11T09:12:00.000-08:00

My surgery date has been finalized: WEDNESDAY, JANUARY 20 AT 2:45 P.M. All the paper work and insurance authorization came through the end of last week. So it's about a week-and-half away. 8 days exactly! I have a pre-op appointment tomorrow with my doctor and then another appointment with my pain psychologist on Wednesday.

Thank you for your prayers over the past few days. They were answered. I made it through the cold spell here in Michigan (I think most of the U.S.A. felt it :/ ). My pain did not spike as I expected. I was actually able to be more active than I anticipated. My family moved all my furniture into a new, LARGER bedroom. My parents thought it might be easier for my recovery to have some more space. This room also gets more sunlight, which is wonderful. This move has already proved helpful. It's still on the 2nd floor. I decided a while back that as long as I could do the stairs, I would keep forcing myself to walk them. It is good to keep those joints moving ;)

While talking with a friend the other day, I realized that some of you might not know how to contact me other than commenting on the blog or through Facebook. I decided to put my contact information on my Facebook profile. Please feel free to contact me if you would like. I'd love to hear from you especially since I'm not getting out much right now. I can be a little slow on getting back to people depending on the day, but I will get back to them sooner or later.

Thank you, again, for your prayers! I will keep you updated as the week continues. God bless!

A few steps backward

2010-01-07T08:49:00.000-08:00

Right after the Stimulator Trial, I had a stretch where I actually felt slightly better. My pain was more moderate; my appetite was up; I was sleeping thru the night; and my mood was hopeful. I'm thinking the stimulator trial actually had a sort of "long term" effect, which will hopefully prove true again with the permanent stimulator. Over the last few days, however, my family and I have noticed a change in my symptoms that resemble those like in October and November: trouble sleeping, heart palpitations, headaches, severe pain (it feels like a cross between a severe internal burn and a bone fracture) in several parts of my body, and a lack of appetite. Also, the constant weather changes aren't helping. This makes me want to live in a place that is warm all year around and doesn't have many weather changes...hmmm :) Anyways, I would greatly appreciate your prayers these next several days until the surgery. I know it is less than two weeks, but it seems a long time away right now. Thank you and God bless!

Pending Date for SCS Surgery

2010-01-04T16:40:00.000-08:00

I hope you all had a wonderful Christmas and an exciting New Year. It was pretty quiet at my house. I actually rather enjoyed the peaceful holidays with my family:) My siblings did a lot of ice skating on the lake. We all went to see Disney's the Princess and the Frog last Saturday, which was quite lovely.

I have a pending date for my SCS surgery is on...WEDNESDAY, JANUARY 20 at 2:45 PM. I will keep you updated if anything changes. As for me, I am counting down the days until the surgery and am starting to prepare myself mentally for the recovery.

Also, my physical therapy has stopped for now until after my surgery. My therapists want to save my sessions for after the stimulator has been installed so that we can resume progressive therapy. I will miss the "almost daily" outing. My mom and I are trying to figure out a substitution. I have two more sessions with the pain psychologist before the surgery. I think those will be very helpful as I prepare for surgery.

I think that is all the news for now. Hopefully, the next two-and-half weeks will go by quickly. Thank you for keeping me in your thoughts and prayers!

Holding On

2009-12-23T14:25:00.001-08:00

We still do not have a surgery date. There was some confusion when we would hear from the doctors. At the doctor's appointment on Monday, the doctor said that the surgery will probably take place sometime in January. We might be hearing from a case manager about a date sometime between Christmas and the New Year, but we will hear from them more likely by January 3.

My pain may fluctuate daily between moderate and severe depending on my activity, the weather, and whatever else sets it off. At least, I am trying to keep my spirits up with the hope that I will have the permanent stimulator soon and that it will give me as much relief as before. My doctor did tell me that we will be taking a interdisciplinary approach for my recovery after surgery: stimulator, pain medications, pain psychology, and physical therapy. The stimulator is not a "fix-all" situation, and I understand and agree with that. We will take one step at a time and go from there. God-willing, we will see some improvement.

I hope and pray you have a wonderful and safe Christmas and New Year! God's blessing and peace!

Around and around

2009-12-18T12:20:00.000-08:00

You know those little Dickens figures in the Christmas village that go around on a track...around and around and around? That's a little like how Amy says she feels right now-in the midst of the Christmas season, waiting and waiting and waiting, and making her track walking the daily 1,000 feet required for PT all in the confines of home. But it's warm... and she can look out at the lake (the first ice sailer was out this afternoon)...and enjoy the house all decorated for Christmas.

Since the lead was pulled out Monday, the RSD has returned to "normal", meaning mom's doing the post once again because her pain is all back and her right hand is being ornery. The trial was a success, apart from the lead coming disconnected from the stimulator for the last 24 hours, and it looks like a go for the permanent implant. So, Amy's ready to go through it tomorrow, but there's a bit of coordination that needs to take place first-primarily between the physicians (two will be working as a team for the procedure), the Boston Scientific rep who will be in the surgery, and Sparrow's OR scheduling. Best case scenario-the week between Xmas and New Year's. More likely-sometime the first few weeks of January. We have an appt. with her primary physician Monday morning, and we should know better then-will keep you posted on the date. It will be great to have a plan, and we'll work toward that. Sam's home from Hillsdale, eating ice-cream, and giving Amy new distractions.

Will you pray with us for a spirit of endurance as we all wait for the next step?

A litte longer

2009-12-11T18:03:00.000-08:00

Things are going well. The stimulator is giving me a great deal of relieve and actually a chance to revive a little. The beginning of the week was used to recover from surgery and then I have kept myself busy with activities to see how far this stimulator will cover the pain and let me return to "normal life." So, I'm sleeping better, walking with a cane, fixing my own meals, wearing my normal clothes, etc. All in all, I think this is a success. The doctor did not take the stimulator out yesterday actually. It was decided that it would be a beneficial for me to have a longer trial with the stimulator as long as there is no infection at the site. So I will have it in until Monday, which makes me so happy :) I can be mostly "pain-free" for the weekend. I will be able to experiment a little more with how much the stimulator will improve my over all well-being. I have an appointment on Monday at 3:20 PM for the lead to be removed; I guess it is a very simple procedure. They are going to try a couple of the things that might benefit me with the position of the lead for the permanent implant while I am there Monday. Please pray that my incision does not become infected in these next few days and also that the realization of pain on Monday will not be too much of shock to my system. I'm worried that I will in a great deal of pain and become depressed, but as my pain psychologist told me today "think positive."

Trials, Tests, and Tidbits

2009-12-09T16:51:00.000-08:00

Day 3 of the Trial:

More fluctuation today with the stimulator and discomfort with the incision. Worked with the Boston Scientific rep via phone to make some adjustments, then met at Sparrow to do some reprogramming. More comfortable this evening and looking forward to another good night's sleep-that would make it three in a row.

Tests today:

When asked at admitting if she'd been in recently, Amy couldn't help but laugh; since she'd been through admitting 3 times in the last week for different diagnostic tests, she's definitely on the "regulars" list and we've got the routine down well for the wheelchair route between the main hospital and the professional building. X-rays of the lead position in the spine were completed in preparation for tomorrow's consult.

Dr. Nair met Amy at PT, and after a quick check of her back, stayed to observe her walking-first with her cane, and then without. He was encouraged by her ability to walk unassisted, even with hesitation, and felt that strengthening would come with time.

The best news? He may want Amy to stay on the trial until Monday. This would allow them to continue observing the success of the stimulator on her body as well as allow her to work with the device more and feel more comfortable about what lies ahead. Will you pray with us for the decision that will be made tomorrow?

Tidbits:

Isaac and Esther have been sick this week. Typically Amy picks up whatever they get and is beginning a sore throat. Will you pray that she can fight this one off?

The neurostimulator is an amazing device. Its impulses are felt at all different points throughout Amy's body, and can be fine-tuned through her programmable remote. She can direct stimulation to her left or right side as well as specific parts, i.e., bottom of her foot, knee, or abdomen. She is visibly in less pain, and even though we've got a long road ahead, we are hopeful.

Stimulator Stats

2009-12-08T08:20:00.000-08:00

1 Internal Lead

1 External Stimulator

4 Hours in Outpatient Surgery

5 Pain Level in Right Foot at Point of Injury

85 Percent Coverage in whole body where pain is being masked

First night sleeping without waking in pain: Priceless!

Doctor's report: working as hoped for; it's in a good place; let's see how it goes

Boston Scientific Rep's report: everything we wanted to see happen did; giving you full programming options on the stimulator remote because you're so smart and techy.

Parent's Report: if the eyes are the window to the soul, seeing your eyes without pain for the first time in 8+ months is indescribable.

What's next?

Wednesday- physical therapy evaluation

Thursday- removal of lead and consult about trial and plan for surgery

Friday through date of surgery-back in pain, but knowing now that this is going to work!

We are so grateful for all your prayers and support.

MRI and Trial

2009-12-04T11:15:00.000-08:00

After meeting with the neurologist on Wednesday, she wanted me to have some tests that would help in the diagnosis process, just to rule out any other possible problems. One of the tests is an MRI, which I will be having tomorrow, Saturday, December 5 at 9:25 AM. It will take 1 hr 45 min from start til finish. The other tests were blood work and an x-ray. I will probably have the results by next week.

We are continuing as planned with the surgery trial, and it is scheduled on Monday, December 7 at 10:30 AM. The procedure will take about an hour to hour and a half. The rest of week I will be working, as needed, with the company rep to program the spinal stimulator to give me the most relief.

Other than that, I am trying to stay as warm as possible to keep my pain down and doing my PT exercises as prescribed :) I have some visitors this weekend, which I am very excited about! Thank you all for you prayers and support! And, also, My mom said she would be happy to write the updates at least the beginning of next week when I am recovering...so Amy out for now!

2nd Opinion

2009-12-01T08:49:00.000-08:00

I haven't done a good job keeping people updated lately. Ever since the RSD has spread throughout my body, I never know what to expect each day :) The main thing is to keep warm now in this cold weather but not too warm. My mom has joked and said I'm like an infant or an elderly person who has a hard time regulating my body temperature and then everything is off kilter.

For those of you with Facebook profiles, my cousin Diana Cieslak has started a group called "Amy Johnson Rocks My World" (fyi I did not come up with the name...haha!) to keep people updated with my progress. This is so helpful especially since I have RSD in my hands now, and it only increases the my pain when I type. Also, I will probably have my mom step in and write the blog updates for next week's surgery trial.

My 2nd opinion appointment is tomorrow (Wednesday, Dec. 2nd) at 1:30. It is with the only Neurologist in the area that works with RSD patients. I'm not sure what to expect. I'm just hoping to get more insight into the treatment of RSD and possible support of what we have been doing with my care. I have a follow-up appointment with my pain specialist physician the following afternoon to discuss the appointment with the neurologist and then my trial the following week.

Thank you so much for your notes of encouragement and support. I greatly appreciate them and your prayers. I know that God is faithful and good. I hope everyone had a wonderful Thanksgiving and enjoying this holiday season!

Mirror-Image Pain

2009-11-25T10:12:00.000-08:00

Anxiety and stress can do strange things, things we can not even understand. Yes, the RSD has spread to all four limbs now. In last 48 hours, I have experienced pain that was more than I have endured in the past. I spent yesterday mostly in my bed with either flannel PJs or sweats and sweatshirts on under my comforter in order to keep myself warm (and don't forget all the pillows!) I took a quick walk in the afternoon to get my legs moving. By late afternoon and evening, I was all feverish by not same kind that you have with the flu. My temperature was normal, but I could sense that my stomach and nervous system were out of sorts. After talking with the NP this morning, we learned that the feverishness is from the sympathetic nervous system basically going "out of wack". This is normal for RSD; unfortunately, there is nothing we can do until the trial in a week and a half. As for the spreading to the left-side, this is also very normal for RSD; the only reason they can give is that any anxiety or stress can increase the effects of RSD. So I need to stay as stress free as possible right now. It is hard, because sometimes I don't even feel stressed but my body might still feel it. We are also thinking that my sudden increase of pain could have been from the change in weather that brought in rain last night. The only reason I can write today is that my pain is down; I didn't think I would be able to for a few days, but God was gracious. Hopefully, it will continue to stay down for a few days. I'm not sure what the snow flurries in the next few days will do for the pain. I used to love snows; now I am not sure what my feelings are...haha!

Happy Thanksgiving, everyone!

Meeting with Boston Scientific Rep

2009-11-23T05:39:00.000-08:00

To me, this past week was a rather mellow one compared to the last;) The RSD in my right hand was not as devastating as I thought it would be, but I think we solved that problem of the intolerable pain and the uncontrollable spreading of the RSD by increasing my anti-depressant at the beginning of the week. Everything seemed to be under control until about the middle of the week when my nights seemed to getting more restless; I was waking up every couple of hours during the night with a racing heart, which is normal with this medication. Each night I was waking more, and my heart was racing abnormally fast. So the medical team decided to stop increasing my dosage. In the past, I have always struggled increasing this medication so this "increase problem" is not a surprise. I'm just not sure what my pain level will be like once the higher dose has exited my system.

I met with the representative from Boston Scientific on Friday. He will be doing the trial with my physician on Monday, Dec. 7. He brought with him the spinal cord stimulator so that my parents and I could take a look at the device that has helped so many other RSD patients. The generator is about 4-5 cm in diameter and a little over 1 cm deep; this is what is implanted. The leads are channeled through the spinal cord canal (I'm not sure what the technical term is); there are two types of leads: one looks like a wire and the other is called a "paddle". The physician decides which to use depending on the patient case. For the trial, the leads will be inserted into the spine at the specified locations, but they will be hooked up to the generator externally. The rep will then program the device specifically for me. I will wear everything externally for 4-5 days and see how it goes :) Then we determine if I am a candidate for implantation. The question was asked whether I should be going to Cleveland Clinic for the surgery. The rep, who has done implants at the Cleveland Clinic, told us that there are about 11 residents at the clinic so that answered our question. I am not going to have a resident do surgery on me when I can have a physician do it here. The rep completely trusts my physician and the other neurosurgeons, who could possibly do the surgery. I was glad to hear of it especially because of my situation with car travel right now, and that switching to another hospital might just elongate the process at this point.

Other than that, the walker is helping a great deal with moving around the house. I am actually walking more, because of it. At PT, they are keeping me moving, working on my leg strength as long as I can tolerate. There has been talk of making a temporary bedroom for me on the first level of the house for the trial and surgery. I think that is probably a good idea especially with all the stairs in the house :)

I hope everyone has a wonderful Thanksgiving! Our house already has started that holiday excitement, and I don't think it will end for a while :)

Right Hand

2009-11-15T17:43:00.000-08:00

Real quick. By last night, the RSD spread through my right elbow, forearm, and hand. I did not expect it so quickly. It has been a very painful 24 hours. I'm not sure how much more typing I will be able to do unless it's left-handed. I might need to turn my updates over to one of my parents. One way or another I will let you know how I progress. God's blessings.

Wheelin' it

2009-11-14T08:04:00.000-08:00

In my bible reading this morning, I was gently reminded that God's ways are not what we might chose for ourselves and also they are much better for us (Jeremiah 29:11-14a). I also read from Matthew 26: 36:56 where Jesus Prays in Gethsemane and Jesus' Arrest. It helped me put into perspective my own pain condition and that He truly does understand the suffering and trials we endure today.

Wednesday's entire PT appointment was spent considering whether I should switch to a walker or loft strand crutches. These type of crutches are those that connect at right above your wrist and your hand rests on a handle; they are mostly used for polio patients. However, I found they did not give me enough support and increased my pain. So watch out! I am wheelin' it now :) I felt rather humiliated at first having to submit to a walker but I will give you some details that made me change my mind...first of all, this thing is really cool looking :) It is black and florescent blue with 4 wheels, hand breaks, a seat, and a basket. I can walk a great deal better with it, because it distributes my weight more evenly and my gait has improved greatly. I found out after I started using it that my physician and NP actually would have preferred me using one earlier, but they didn't want to put me in that category too early due to psychological reasons. Crutches are only supposed to be used on a short term basis. My NP also relayed a message to me that helped me put things into perspective, "People are only worried about what they are going through and not about what you're going through." Basically, people are self-centered and only look at the outside of a person. So, I decided it wasn't worth being self-conscience about.

My NP told me that I need to stay has little stressed as possible right now as I can. Stress can increase the effects of RSD. Then comfort, or in other words pain management, is the top priority. I was thinking how much my lifestyle has change over the past months. My attire changed from nice slacks, skirt, dresses, sweaters, turtlenecks, blouses, etc. to sweats or yoga pants or polar fleece pants, t-shirts, sweatshirts, polar fleece sweaters, etc. Texture is a huge issue with RSD. I can only put on one or two pairs of shoes on my feet. Make-up is almost non-existent. I am surrounded by pillows of every size, shape, firmness, and texture. A blanket is always handy. I always have to have my right foot propped up. My feet always have to be covered by a sock over a slipper in order to maintain body heat. 2-3x a day parts of my limbs are wrapped in hot clay Thermapaq's in order to reduce pain. Etc. etc. If you don't include the pain, this is a pampering of sorts :)

Well, I guess my commandment "Thou shall not spread" for the RSD is not working, because, within the past 24 hours, it has entered my elbow. I have determined that joints are the most painful places to have RSD. At least, I know where the RSD is heading. Maybe God wants me to become left-handed :) This is more frustrating than words can express and is very emotional. The highest priority right now is to have all the authorizations go through so that I can have that test to determine whether I am a candidate for the spinal stimulator. I don't think it matters when I see the neurologist for a 2nd opinion before or after it; I think we will go through with the test with or without a 2nd opinion.

The main prayer request is that the authorizations will go through quickly and without difficulty. Also, I have a psych evaluation on Monday to determine if I am qualified to have the test done. I am not worried about it, but please pray it goes well. Last but not least, continue to pray for for strength, peace, and hope through this time of trial. Once again, thank you for your prayers! God's peace.

Questioning and Tears

2009-11-11T08:31:00.000-08:00

I am a old pro now with these epidural procedures. It was at a new facility though, which made me a little nervous. However, it was the same procedure as always; I think this was #13! It did give me more relieve than what I was expecting. Praise God! The procedure decreased the pain in my calf, outer upper knee, and thigh. However, the pain in my foot, inner knee and under the knee, groin, and lower abdomen did not improve from the procedure. This is still all on my right side of my body; the RSD has not spread over to my left side. My doctor has decided that I will only have these procedures every couple months from now on, because their effect decreases the closer they are. So hopefully the relief from this procedure will last a while.

I have to admit that is morning was filled with questioning and tears. While I have tried to be hopeful over these past several months, it has been very difficult for me to accept that the Lord has chosen for me to essentially be crippled by pain in this season of life. It is hard not to question and even to become angry at times, but the Lord's will be done and not mine. Within the last 24 hours, I have started to question whether the RSD has started to spread again. This morning I realized it was true. It has spread up the outer edge of my back into my armpit. While this is painful, it causes a more frustrating problem with mobility. I am walking with crutches right now to decrease the pain throughout the leg and foot. Where my crutch hits my underarm, it increases the pain of the RSD to the point that I am not sure I can walk with two crutches. One crutch makes my leg pain unbearable. Right now we are thinking there are two options: I walk with a crutch on the left and a cane on my right, which we are not sure will work, or I will have to use a wheelchair for mobility, which is not a good choice because it defeats the purpose of retraining the nerves. I am not sure if I have mentioned, but I have read of RSD cases where it has spread to all four limbs. I pray to God that this does not happen!

A question has come up of whether it is worth continuing with PT or not, because it seems like the RSD is only worsening. But then, again, if PT can help my limbs in range of motion and strengthening, maybe it is still better to continue to fight against the pain. It is the constant battle between the amount of pain one can handle and the loss of ability to use/move a limb. In a sense, the nerves must be retrained!

So, this is the state of things at the moment. There has been no change in the appointment date for the 2nd opinion. We are working to get a date for the test. It sounds like once that is set things will be rather crazy with meetings with the company representatives.

Please continue to pray for relieve from the pain and that the medications would work together to bring relief. Also pray that the RSD will stop spreading. The spinal stimulator is most successful for lower back and limb RSD cases. Pray that I would have the strength, faith, and peace to continue to work through this illness. Thank you so much for your prayers and support. God bless!

Pillows

2009-11-07T08:23:00.000-08:00

I am off the terrible drug that gave me so much trouble! This past week I felt I was taking a blank pill that was doing nothing for me except upsetting my stomach once in a while. My pain has been quite severe this last week. The RSD has spread practically throughout my right leg and up into the lower right abdomen. Some parts only hurt intermittently and/or by touch, but the rest are constant. I have to adjust how I sleep and sit. Pillows of every shape and size are everywhere :) At least, they somewhat relieve the pain while I sit, sleep, and if I have to travel in the car (car travel has become difficult and painful for me). However, I have found no relief for my abdominal pain; any sort of pressure increases the pain. I am sleeping more, or at least resting more, lately. It is due to the increase in the pain lately and that my medications are not giving me relief. My body basically shuts down for some time in order to cope with the pain, and I actually wake up with less pain. Your body can only handle so much pain before it's harmful in itself so it shuts down in a way. So things don't seem to be heading in the right direction :/

My PT re-evaluation showed that my foot motion is improving and that my strength has not suffered even with the pain, which is great! I had a full-filling follow-up appointment with my doctor and nurse practitioner yesterday. It was determined that drug therapy will not be the cure for my RSD case, which is pretty obvious ;) I have gone back to the other anti-depressant that I was taking before this past one. I don't take them as anti-depressants; they are more used for the nerve pain medication in them. Also, the serotonin in my body is greatly depleted due to the pain; this helps to replenish it. My doctor added another added anti-seizure medication (I am not having seizures :) ), but they have found in research that RSD patients respond with decreased pain on anti-seizure medication due to a slower nerve response or something like that. This medication will also help sleep at night due to its sedation side effect. I will slowing increase the dosage over the next couple weeks.

Now for the bigger news, I will having a procedure on Monday, November 9 at 11:00 AM. It is a Transferameral epidural, which is specific block for the right leg. It will hopefully give me some relief for a little while. The relief can last a week to a couple of months depending on a person's severity of pain. I am not sure how much relief I will receive, because in the past, I have not had much. But I will hope for the best :) The great news is...we are starting the process for the test run of the spinal stimulator. This is when they will insert electrodes under my skin in my back and send electrical stimuli that will hopefully mask my pain. This will determine if I am a candidate for a spinal stimulator. Please please pray that I am! If I am not, we have to start all over with drug therapy. The test will be hopefully in a couple weeks, once the insurance process is cleared and the company is determined. I will be hooked up to a external portable generator for about a week. We are all hopeful that it will work. Also, my 2nd consult with the neurologist was moved up to December 2nd. We will be calling every week to see if we can get me in sooner ;)

My parents have been a great comfort to me. Thank you for your care packages and prayers!

Doubling it

2009-11-02T07:47:00.000-08:00

Well, it has been a while. I hope everyone had a fun Halloween! This past week was tolerable. The side effects decreased each day. However, it can still make me sick to my stomach. The main problem is that the medication does not mask the pain as well as the other drug I was taking beforehand. Also my pain was increased by a balance activity at PT on Wednesday. I guess I won't be doing that one for a while...haha! The weather has also been effecting the pain lately. So my pain has been rather severe the past 4-5 days.

For this upcoming week, my doctor would like me to double my dose. I'm not looking forward to this obviously ;) I'm thinking the side effects will increase again but hopefully only temporarily. And maybe this new dosage will better mask the pain. I have another appointment with my doctor this Friday to determine if this medication is working for me. We did schedule an appointment with a neurologist for a 2nd opinion, but the first available date is Jan. 6. We are on a cancellation list so hopefully we will have an earlier appointment. I believe that is the news up to date. I will let you know how this week goes :)

Starting up again...

2009-10-28T08:06:00.001-07:00

I just took another dose of the pill that gave me sooooo much trouble on Sunday. I would really appreciate your prayers through the day and into the night. We are thinking that there were multiple issues going on the first time I took that probably won't interfere this time. For instance, this new med might have interacted with one or two of the meds I had stopped the day before, which could have increased the side effects, and/or I am now thinking I also had a bug that began mid last week and continued through yesterday, which also could have made things 10x as worse as they really are. So, I am trying to be optimistic and also prepared! I am hoping and PRAYING that I won't have to go through what I did on Sunday. Thank you, in advance, for your prayers! And I will let you know how it goes on the other side :)

Bad Reaction

2009-10-26T07:54:00.000-07:00

Real quick...while this is somewhat "post problem", I experienced a "rough" reaction to the new medication. I took the pill at 10:30 on Saturday evening and had some trouble falling asleep. I woke up at 3:00 A.M. with extreme nausea and increasing constipation. I spent from 7:00 A.M.- 2:30 P.M. in the bathroom. After that, I spent the rest of the day in bed, because I couldn't keep warm; I was achy, weak, and feverish; and my pain in my foot was severe. I finally fell asleep at 10:00 P.M. I woke up this morning with still some nausea, weakness, and achy-ness, and I'm still having a hard time keeping warm.

My parents and I are not sure if I just had a first bad reaction to the medication, which I have had in the past to other medications, or if the medication negatively reacted with other medications I am taking or had just stopped. I have not taken the new medication again for fear of having the same reaction. I am waiting to hear back from my doctor on whether I should continue taking this new medication or if I should switch back to the one I was taking beforehand.

Thank you for keeping me in your thoughts and prayers. God bless!

Two Options

2009-10-24T07:58:00.000-07:00

It's been a while. The week came and went. The medications I've been on sedate me, and time slips by rather quickly. I will try to give a rather brief overview of the week's happenings. The P.T. appointments were uneventful except that I will starting pool therapy next Wednesday. Hopefully, that will be helpful. The EKG results showed what was expected. Both pain and pain medication can cause the heart to race or even to beat arythmically. This is what is going on right now. It is just good to know about it.

I had have a long follow-up appointment with the nurse practitioner and doctor yesterday. I did discontinue taking the drug that was giving me so much trouble; I have one new medication (hopefully the side effects won't give me too much trouble :) ). The topic of yesterday's meeting was my family is basically at a point of making some major decisions: we can either go ahead with the spinal stimulator, or we have to start all over with the drug combination therapy. I will be going to a Neuorologist in the next few weeks for a second consultation. I have a follow-up appointment with my pain management doctor in two weeks. I will still continue with P.T. 3x a week just as before. I think that is all the news. Things seem to be moving along at a quick pace. We will be making these decisions in the near future.

God's peace!

Full Dose

2009-10-18T09:41:00.000-07:00

In my appointment last Friday, my doctor asked me to increase my dosage back up to twice a day. So, it's been two days with a full dose. I haven't had the nasty side effects yet, but my pain has increased drastically and moved into my thigh. I guess for RSD to move is normal. My doctor calls it a neural link between joints; when it moves to another limb, it is a "mirroring effect."

I haven't been able to go to church yet since moving home. I was able to take a few short walks outside with a crutch and a quick Target run on Friday, which was a first since I had left school. The thing with RSD is finding that balance between pushing yourself just enough to improve mobility and joint movement but not too far that you increase the pain.

I have a baseline EKG on Monday around 1 PM to rule out some racing heart issues that have been coming up for some time now. I'm not sure if it is medication related or organic, but hopefully nothing is going on. I have P.T. scheduled for M, W, F, which is great, because it will get me movin'. Then I have a follow up appointment with my doctor on Friday to see how I have adjusted to the full dose medications. He determined at our last appointment that we need to move at a more aggressive pace with my treatment. There are not many more oral medications he would prescribe for my case based on my past performance. I am not responding as well to epidural treatments. So we are starting to look more seriously at a spinal stimulator, which has proven to help significantly reduce pain for RSD patients.

Thank you for your notes in the mail! They truly brighten up my day :) If you want my contact info, contact me on Facebook. Also, for those in the Lansing area, I can have visitors now probably for an hour to an hour and a half.

Here are my prayer requests for the next few days:

1) The results for my EKG on Monday, 10/19 at 1:00

2) P.T. appointments on Monday, Wednesday, and Friday (10/19, 10/21, 10/23)

3) My doctors appointment on Friday, 10/23 at 1:15

4) That my pain would decrease and stop moving to other parts of my body.

1st Day of P.T.

2009-10-14T13:52:00.001-07:00

I had my first day of P.T. at Sparrow Outpatient Rehabilitation with J.B., who I worked with in the Spring and the Summer. It was basically a full evaluation. I have much discoloration on my foot's arch, ankle, calf, and knee. My foot and sometimes the knee is hypersensitive to touch. The foot and knee had also lost some of their strength due to lack of use. Also, the foot had lost some of its range of motion. So, I've got my work cut out for me :) I have daily exercises in desensitizing, range of motion, strengthening, weight-bearing, and walking distance. At least, I have something to do now...haha! I am walking with either one or two crutches at this point. My next P.T. appointment will be Friday. I will have P.T. 2-3x a week with either J.B. or J.K. They are both great!!!

As I mentioned Monday, I am having trouble with this new medication. It working well with decreasing the pain. But when I increased the dosage to the maximum, I started having flu-like side effects, which worsened as I continued to take the medication. I reduced the dosage again, but the pain increased of course. I have an appointment with the physician on Friday afternoon. I am not sure what he will have me do. Here is the plan: There are about five(5) narcotic medications that I can try to reduce the pain in order to improve my quality of life, which, at this point, my days are spent mostly sitting, P.T. exercises, watching movies or tv, on the computer, talking with my family, reading, and/or P.T. and doctor appointments (it now sounds pretty pathetic but it is the only way to keep the pain down). Okay back to the plan, I am either #1 or #2 narcotic medications. (Side note: these are on top of 2 other nerve pain medications I have been on since the end of May.) If none of these medications work, we will start seriously talking about a spinal stimulator. It would be a tiny machine placed underneath my skin in my back with 2 leads attached to my back. These leads would be attached to my spinal cord. They would emit electronic stimuli in my spinal cord up to my brain before the pain reaches the brain. This would in essence mask the pain. I have been doing some reading about this therapy, and it seems like this therapy has helped many people a great deal. So, basically, I have some options, and my doctor has a plan :)

These past couple of weeks God has been opening my eyes to look at my illness in new ways. It might be a way of redirecting my life or halting my life for a matter of time. I received a note a few days ago from a woman, who has suffered much more than I have this year. She graciously reminded me that God only gives us trials that me can bear and will provide us the strength to bear them. How true! This brings to mind Jeremiah 29:11 - " 'For I know the plans I have for you,' declares the Lord, 'plan to prosper you and not to harm you; plans to give you hope and a future.' " In Psalm 23, the Lord provides and protects. I remember through the four years of college and even last year wanting, evening praying, for a break from the constant demand of homework, deadlines, projects, commitments, meetings, etc. After reading Matthew 12:1-21, "Jesus is Lord of the Sabbath" and "A Man with a Withered Hand", I began thinking that maybe this time of illness could also be a time of rest for me. As Jesus healed the man with the withered hand, my faith was affirmed that the Lord can heal my infirmity. My hope is in the Lord.

Thank you, again, for your Facebook messages and phone calls! They mean a great deal to me.

I have two more prayer requests:

1) My Doctor's Appointment on Friday, October 16th @ 1:30

2) One of the main problems people with RSD have is feeling socially isolated. Being in pain constantly takes a great deal of energy so one has energy to spend elsewhere. Since I moved to Kalamazoo and back in about a month, I really feel socially out of touch. I tried attending a Christian young adult's group the other night, but my pain was too that I had to stay home. Could you pray that God might give me opportunities to become involved in a local social group and that he would provide a way for me to physical do it?

Have a good evening!

Trouble with New Med

2009-10-12T11:15:00.000-07:00

I have been rather "housebound" since the move. The TENS machine is working wonders on relaxing my foot and knee muscles and temporarily reducing the pain. The new medication has reduced my pain greatly, which is a blessing, and I have been sleeping deeply through the night and sometimes during the day due to its sedation side effect. On the other hand, the past couple of days it has made me very ill with dizziness, nausea, and "achy-ness". The nurse at the pain clinic says it is only temporary; hopefully, it is.

I start P.T. Wednesday :)

Home Sweet Home

2009-10-09T06:49:00.000-07:00

Home at last! My parents moved everything from Kalamazoo to Lansing yesterday. So I'm officially moved back into my parents' place. I am so blessed having such a lovely home by a lake. It was such a haven from March to August, and I think it will be so again. My main caregiver is my mom; my little siblings try to help as much as they can ;) I learned during my time in Kalamazoo that I cannot deal with the RSD alone. I really need my family nearby especially when the pain is unmanageable. Thankfully, the Lord has provided a way home and to my family.

Yesterday, I had my last Physical Therapy session at Bronson Rehabilitation in Kalamazoo with C.L. He's a brilliant man. I left with a TENS machine. It is a electric massage therapy device. It is suppose to release endorphins within the body through electrical massage thus reducing the need of pain killers. I have already seen improvement :) I am also trying to get my hands on a hydrocullator pad. This amazing device uses moist heat (between 100 to 160 degrees F) to reduce a pain in a body part. It works wonders! This past month I have been doing pool therapy at Bronson in a 86 and 94 degree F pools. I could stay in them all day ;) It has helped my weight-bearing and balance so much. Pool therapy is so healing! I start P.T. at Sparrow Outpatient Rehabilitation next Wednesday in Lansing with J.B.; he worked with me in the Spring and Summer so he's familiar with my case.

Thank you for all your comments and Facebook messages! They mean a great deal to me. To answer a few of your questions, as of now, I can't have visitors. I am going through medication changes so it would be better to wait until I stabilize in about a week. After that though, I would love to have company. Also, yes, I have thought of taking on-line courses or working on some sort of certification. My physician does not even want me working right now until we get my pain under control. In pain management, they use a term "plateau" meaning when all of the treatments are working hand in hand to minimize the pain as much as possible. I have not reached this "plateau" as of yet, but that is what we are working towards.

Please pass on my blog address to any who might be interested in it or if I forgot anyone in my e-mails. I was sending out mass e-mails and quite possibly forgot a name or two :)

Prayer requests:

1) My family and I are not sure if I am eligible to stay under their health insurance after the end of this year. This is problematic, because I need it for all my P.T., medications, and procedures. I am not sure whether I will be able to go back to work by the beginning of next year, which might then guarantee me to health insurance. Please pray that God will show us guidance through this matter.

2)Please pray that the transition of living back at home will be easier for all of us than expected.

3)That the medications, therapy, and procedures will work in harmony to decrease the pain and retrain the nerves.

4) That I would use my time here at home wisely and will seek God's will through this time.

Thank you all for your support and prayers. God bless!

Quick Overview

2009-10-06T11:21:00.000-07:00

Hello, all!

As most of you know or have heard, this past March I was diagnosed with a chronic case of Complex Regional Pain Syndrome (CRPS) Stage 1 - Reflex Sympathetic Dystrophy (RSD). It is basically a reversal in the reaction of the nerves due to nerve damage in a specific area of the body; mine is in the right foot. This causes the nerves to constantly fire pain signals to the brain, causing the person to always be in pain. RSD usually occurs from a minor accident such as a fall or sprain or surgery. My case occurred from a severe sprain that happened from a fall 3 years ago at Hillsdale College. This past March, the RSD came on by a small re-injury to my right foot. Due to the pain from the RSD, I couldn't barely walk from March until June. From June to August, my physical therapists worked with me to start bearing more weight and walking with two crutches, then to one crutch, and finally to a cane. In August, I was walking almost normally with a cane and had a fair amount of stamina back. The plan was for me to start my graduate studies in Audiology at Western Michigan University, Kalamazoo, Michigan. After being there a month, my health regressed dramatically. My doctor decided that I should take a leave of absence for the rest of the semester so that I could be closer under his supervision and have more aggressive therapy.

I know this is a rather brief rundown, but there are many of you who I knew didn't know what was going on. I now understand this will be more "long term" than I expected, and I thought this would be an easier way to keep everyone updated. If you are interested in learning more about CRPS/RSD, there are plenty of sites on the web. One I suggest is RSDinmotion.org Here is one quote I found from a RSD website and I fully agree with

"RSD is as painful as cancer, as expensive as AIDS, and as debilitating as arthritis."

There is not really a "cure" for RSD. People have gone in remission with this pain syndrome. The key is to catch it in the early stages before the pain is severe and the body part has lost mobility. Thankfully, I have made progress with my foot's mobility and am able to walk around with a cane or a crutch.

I would appreciate it if you would keep me in your thoughts and prayers:

1) Changes in weather greatly effects my pain.

2) I can't work or go to school right now and am unsure how I should be using my time wisely

3) Pray that the medication, treatments, and procedures will do their job in blocking the pain and retraining the nerves

4) There is a possibility that the RSD has spread into my right knee (spreading from one body part to another is one of the characteristics of RSD)

5) Above all, pray for strength and comfort in daily bearing the pain and other symptoms of RSD.

I will keep you all updated as I progress and let me know if you have any ideas or suggestions for me:)