There are many different kinds of falls-economic, mental, physical & spiritual.I was labeled a "Fall Risk" the first time I went to the hospital for what was eventually diagnosed as Chronic inflammatory demyelinating polyneuropathy, a progressive, auto immune disease.In a few weeks, I went from healthy to being an invalid and eventually almost completely paralyzed. With the help of God, loving family and friends, and modern science, I have begun to recover.
This is me, two years ago. Last year I was jubilant. Not so much this year. I have noticed that I am continuing to get stronger (yay!) physically. Mentally, I am struggling. I wrote some poetry last week and posted it on another blog. When I went back to reread it, I realized that I am a really angry man. I keep thinking about those days and weeks in hospitals. In other news, it has been a long time since my last IVIG. That means I am going to start getting off of the Cellcept and if that goes well, Prednisone.
And after another prescription SNAFU, I have decided to get a new doctor. I am waiting to hear back from some one from church recommended.
I discoivered a great test to find out if I am being listened to; If the person speaking to me continues to talk after I have told them I agree with them, they have not been listening to me. I asked my new doctor for a percocet refill, he agreed. When I told him my last doctor had wrote a 90 day prescription, he freaked out and began to lecture me on why he refused to do that. I never asked for a 90 day supply, my old doctor gave it to me and being new to the community of prescription narcotics consumers, I thought nothing of it. I certainly don't have a problem with doing it monthly and I told this guy that, but he continued to lecture me about the inapropriateness of asking for a 90 day prescription.
And when all was said and done, he doubled my dosage. What a jack ass.
I've given myself permission to spend today in bed, even though it looks great outside and the temperature is (relatively) cooler. Tomorrow is my first IVIg in 31 days. This is the longest I have gone between infusions so far.
I am not sure if that is why I feel so rotten (really tired, lots of pain, unsteady on my feet) or if there is another reason. When I had the flu last December, it took months for me to recover; it is plausible that my exhaustion might be left over from the move.
I feel guilty about wasting a beautiful day like today. But the idea of doing what I need to to do get out there is beyond my capabilities right now. Good thing Alex is here to drain the dogs.
Yes, it is really hot here. Despite my reluctance to pay attentiuon to anything newsy, I guess the rest of the United States is also really hot.
Like unbelievably hot. Yesterday, at 10 am, it was already 100 degrees in downtown Statesboro. It was still 100+ at 7 pm, when we went into the Averitt Center to watch Hairspray. Sitting in the Statesboro Regional Library it is 95.
Wow.
I am constantly amazed when I talk to friends not from the South how much they sound like I have moved to another country. They do speak American here.
On a personal note, it have been 25 days since my last IVIg infusion. Adrienne says I am deteriorating and I have to take her word for it; my exhaustion has reached new levels and I feel clumsier than I have in months.
In other news, my re-walking anniversary is next week. What a celebration!
I have been feeling a little gunky emotionally lately. New tough time of year, I guess. I have been so busy thinking about what happened last year that I am scaring myself.
People used to comment on how, during the worst of it, I was keeping my spirits up, that I had an optimistic attitude, and I was relying on God to see me though the bad days and bad moments. To my thinking that was because I was making the choices to do those things. I didn't want to get lost in fear and despair. It was like a big hole in the road that I could either go into or go around.
As always, my appointment with Dr. Boughaba had an anxiety relieving effect. I consiuder myself very fortunate to have found her. We talked about finding a new neurologist in Statesboro and she is willing to help with the search. That was a big relief because I hadn't been able to find any neurologists there that specialized in CIDP like she does.
Chronic inflammatory demyelinating polyneuropathy is not a progressive illness, it is an intermittent condition. She was concerned that I might be having a flare up when I told her about feeling more fatigued lately and off balance more. She proposed extra IVIg treatments for now.
I've been listening to plenty of Led Zeppelin lately. Not sure why.
Just so everyone knows, this is a bad day (actually, several bad days). I am tired all the time, but can't sleep and I am in pain. Nights are the worst.
I have been so busy working on the physical therapy aspect of my recovery that I forgot I have a chronic illness that I know almost nothing of, especially how it manifests itself after the initial symptoms abate.
We made it to church yesterday. I kept falling asleep; at one point Adrienne woke me up because I began to snore...
I haven't been writing much lately, not because I haven't anything to say, but because I have been too busy sleeping my life away. No matter how much sleep I get, it isn't enough. After church, I ate lunch then took a five hour nap. Then came dinner and off to bed I went.
I don't know what makes a good or bad physical or occupational therapist, but I always felt I had competent, if not excellent ones and I was fortunate to have them. And there have been plenty. I had both kinds of therapists at University Hospital, a plethora of therapists at the Drake Center, and then throughout the summer, a succession of physical and occupational therapists came to my house. I have had fifteendifferent therapists.
In August, my neurologist began to adjust my medication, slowly backing off the steroids and reducing frequency of my IVIg infusions.
I certainly don't mind reducing the steroids; the psychosis, diabetes, and whatever else the medication is doing to me are awful. I knew I wouldn't miss spending an entire week each month at the hospital to get my infusions.
The neurologist told us to keep an eye on my symptoms. If there were any regression, we were to let her know immediately and resume treatment at the previous levels. The symptoms haven't returned and I am glad to have gone from 80 milligrams per day of the Prednisone to 50 a day and get my IVIg infusions once per week instead of 5 times (one a day for 5 days in a row) a month.
Today my physical therapist and my occupational therapist told me that I am continuing to get stronger! Take that, CIDP!
Presently I am spending more time on my feet than in my chair. I walk around the house with a cane or steady myself with what ever is handy. Lately, I've taken to using the cane outside the house, leaving the chair at home. When I am tired or feel like I can't trust my legs, I get back in it. Fatigue is still a concern; when I get tired, I am done.
Besides the fatigue, my hands and legs are coming along nicely. The numbness and tingling in my hands is almost completely gone and the strength and dexterity are returning. I am still prettyretrurnedloo unsteady on my feet, especially while standing. Today my physical therapist explained that standing involves constant movement from the muscles in the lower legs. Most of the TABs (temporarily able bodied) out there are probably not aware of how hard their bodies work to keep them upright.
Today I spent some time sitting on a large ball, practicing my balance in my upper body. It is much harder than it looks. Luckily I had my ever vigilant PT to help keep me from falling.
My feet are my largest problem area right now. I have to watch them constantly while walking, otherwise I tend to drag my toes. I could easily trip over my own feet!
I have to admit it is getting better.
Wednesday, September 29, 2010
Wednesday, September 29, 2010
It has been a while since I posted anything, so I am just going to pray, then ramble. “Let the words of my mouth, and the meditation of my heart, be acceptable in your sight, O LORD, my strength, and my redeemer.” Psalm 19:14
I am back in same day surgery this week. The beds aren't as comfortable, but the nurses are awesome. These are the same nurses that held hands and prayed with Adrienne and me last spring (The Best Show I Ever Saw) and helped get me into the hospital at UC last spring. Their fierce (and fearless) witness has been a comfort and inspiration to me.
I started writing to help myself process my illness (and also to inform others).I never expected that it would become so spiritual, but I couldn't imagine how hard it would be to go through this with out my Higher Power.
I don't know what my future holds, but I am not expecting a miraculous cure. The CIDP will probably be an increasing part of my life; there is no miraculous cure in my future. There have been miracles though and more to follow! Instead of taking away my burdens, He will see me through them.
