February 12, 2013
I have stopped taking all the medications that the doctors prescribed because they make my legs even more wobbly than normal. There are some days when I suddenly find myself miraculously “walking” almost normally. It is shocking and I am filled with so much hope that maybe I am starting to turn the corner. But then, the next day, I am often back to the same old thing. Some days my balance is actually pretty good and then, suddenly the next day, I have Jello for legs. It is like a roller coaster and each day is a new experience. I just wish that when I make a small improvement, it would last so I would feel that I was getting better, even if it takes a year or more. If I could just see some definite progress, and if I have progress, it would be so wonderful if I did not regress again. Maybe these little snippets of progress, like getting decent balance, or actually almost walking normally, or my leg working well when I drive, mean that there is some kind of improvement. Maybe this means that the nerve is healing. I know I am supposed to do my PT exercises and I do them religiously. However, every so often I don’t do anything and I seem to feel less pain, with better walking. I just cannot find a common denominator that tells me what works and what does not. I do know that I have to keep my muscles exercised so they won’t atrophy—-although my right leg has already done that. I must also guard against falling into the pit of depression, which is so easy to do. I can feel OK early in the day and by the evening, the unrelenting pain just gets me down and I can feel myself drifting into that abyss of hopelessness.
Tuesday January 8, 2013
I actually was walking a bit better today. I really think it is more depressing when I go to a meeting. What usually happens is that I see multiple people who have had surgeries after mine and they are either recovered or on the right road. That just elicits so many emotions such as rage, self-pity, depression, jealousy, etc. Last night I came home in such an agitated and depressed state of mind that I don’t know how I got through the night. I woke up almost as bad, but as I always say, all it takes is just a smidgeon of hope, which I did get today. First of all I called the office who sends out the medical records, only to be told that they don’t even have a record of this request in their system yet; not good. But, he told me that this is probably due to it being New Years Eve when I put in the request. It probably didn’t even get sent to then until this week, which is only Tuesday, because they probably missed the pick up last week, etc. Bottom line, it is severely delayed due to the holiday and there is nothing I can do about that. He assured me that as soon as they get it in their system, the turnaround time is small. He estimated that the new doctor would not even receive it for at least 2 weeks. Then I called the new doctor and spoke with Katie, the scheduler—who actually remembered me. She had spoken to the doctor and he said he would be glad to see me. HOPE # 1 – maybe, just maybe he will find something. HOPE # 2 – I saw Kevin, the PT at Augusta Back and he still thinks I will get better (maybe not 100% but a lot) and that it will still take time. He is more like a psychotherapist than a PT but he just is so nice that I always leave there with a sense of hope! I am scheduled to see someone named Dr. Cable, a pain management specialist, and we’ll see what he does. The PT told me he was surprised that they dismissed me to go back to work on the 11th. He just sat there, shaking his head and said that the criteria they use to determine work readiness is not geared toward the individual but rather the average patient. That is so wrong because each case should be evaluated on an individual basis depending upon the occupation and the patient, not some average value that does not apply to everyone. I felt that they showed so little compassion and were just plain cruel. I am still in pain and off balance but a little better today, so we’ll see. In the meantime I saw my PC physician for some antidepressants because I am finding it hard to keep on keeping on in this world lately.
EMG – Saturday – December 29th – I went for the EMG yesterday and it showed some abnormality in the L5 and S1 levels of the spine. He said that this may account for the peculiar symptoms that I have in my legs. Monday I am calling and requesting that they send me for a CT scan before my appointment on Jan 7th. If I need to have additional surgery, I don’t want then diddling around for a few more weeks before they get me in. I want to have it and begin the process of healing again. I saw Michael who has had lots of experience with botched back surgery and she suggested her doctor. But, who knows if I will get to see him. I will try the current doctors and if they keep waiting and waiting to see me, then I will try someone else. I cannot and will not live a half life, especially if there is a way to be fixed. These doctors have no compassion and they have no idea how horrific it is to wake up each day with absolutely no change and to be told to “be patient” when you know that something is totally wrong and you keep getting the run-around over and over. Of course I am not progressing; they didn’t totally address the problem!!! I will demand that they get the next test in ASAP and if they are uncooperative, I will see another doctor; simple as that!
Wednesday – December, 26th
I’m happy Christmas is all over! I woke up with a case of very bad depression. I tried to shake it but it stuck with me all day, even though I went to Starbucks with my laptop and did various chores, I still felt like “everything was wrong” and I just cried on and off, even in the car. My knee started to give way at Walmart (my second home) but luckily the shopping cart (buggy down here) prevented me from going down. Still, it unnerved me and added to my morose mood. I was too depressed to actually make anything for supper so I settled for popcorn and leftover turkey. Also there is so much uncertainty associated with the Aflac disability which I still have not received for December. That lack of money coming in makes me frightened and depressed too. The Aflac agent never bothered to return my call—lovely! I kept calling myself fat and worthless and crippled. My state of mind prevented me from getting to a meeting but on a good note, when I came home, David called and wanted to Skype so I could see Henry. I also received the album that Joanne put together for Christmas; Henry’s first year. I even saw Joseph at David’s who is miraculously staying there for a few days. I ended up feeling a little better and know that God will take care of things if I just get out of the way. So, I will get to bed early and read. When I spoke with Joanne, she suggested that just like other illnesses, I will one day wake up and suddenly feel way better. That would be the best present ever in my entire life. I said maybe that will happen and maybe I should believe it. Maybe I am too negative and who knows what the future holds. It is all a mystery to me but I do know that at this point tonight, I have no more control of anything except what time I will clean the bird cages or go to bed. Good night!
12/24/12 – Monday – Christmas Eve – I woke up with the usual stiff and sore body. I decided I would go to the gym and to a meeting. I also did not feel like doing my usual chores in the house today so I went to Starbucks and just sat down with a Pumpkin Spice Latte. I came home and redesigned some of the earrings that Lisa gave me for my “birthday.” Janet’s family usually celebrates Christmas on the 25th but this year things were very different. Due to all her children having plans on Christmas day, they all decided to come over on Christmas Eve. That was fine but it left Christmas day empty, but this was not my call so I had to accept it. In the meantime, my legs for some reason were especially wobbly and my balance was way off. This was very upsetting and I almost fell while everybody was there. That just made me sick. I totally do not understand why some days my legs don’t feel that bad and even feel strong, and other days, I am so weak. When I came home I watched the tail end of It’s A Wonderful Life.
12/25/12 – Tuesday – Christmas Day – My walking was not too bad but a little wobbly again. I even walked outside with my cane for about 20 minutes or so. Then I got ready and went to a meeting. I was ranting a little before the meeting due to my wobbly legs but for some reason, after the meeting I felt a lot better. I wanted to go to Starbucks with my laptop but when I found one open, it was so packed to the gills that I just left, without even getting anything; very disappointing. I came home and put my leg brace on which helps me walk better—sort of (in a peg leg kind of way). Then more cleaning, something I seem to be obsessed with since I got crippled. Janet thinks this is because I at least have some control of this part of my life, and that seems like a good explanation. I am starting to feel depressed and hopeless even as I write this at 7:00 pm, so I will try to go to bed early tonight. I still think about ending everything each day but if I put it off long enough, I usually find something I can hang on to; some hope to keep me going for yet another day.
12/22/12 – Saturday night – Today started out the usual way. Maybe, just maybe, my weak leg felt a wee bit stronger. It seems that lately when I drive, it is not so much of an effort to lift my leg up. At first I thought my response times were slow, but actually it is my leg that is simply hard to lift up to the petal. I feel a little bit less nervous when driving because of this. I got discouraged yesterday when my knee started giving out on me yet again, especially since I just had the cortisone shot. But, then I put a brace on and it felt a lot better. Even someone in the meeting at Midday told me I seemed to be walking better. Of course I still have the problem of losing my balance easily, which is very upsetting. After I’ve been sitting a while my balance is way off. Also, when I was sitting for an hour today, my legs were literally burning which was so uncomfortable. I spoke with Ruth after the meeting and she suggested that maybe that was a good sign that meant that the nerves were “coming back to life”. That gave me hope and it almost sounds plausible so I posted that question on line and we’ll see what others have to say. Apparently I’m not the only person who has had this type of trouble after getting a laminectomy. Who knows how long my spinal nerve was compressed before the pain became so bad that I finally sought help. So, if you figure the pain started almost a year ago, then the numbness started back in the summer, this has been going on for quite some time. There had to be damage that now needs to repair. Nerves take a long time to heal and I think that the longer the nerve root was compressed, the longer it will take to heal. Maybe the burning is a sign that the nerve root is starting to heal. Dear God I sure hope because I need hope; hope is everything! By the way, I watched Mr. Magoo’s Christmas Carol, which I had not seen since I was a teenager. Apparently they fixed it up and it is now back on. I loved that!
12/23/12 – Sunday – Ruth invited me to a prayer service at her Church. She said it was a healing service and sure enough at some point, anybody needing healing was asked to come up and have the reverend lay his hands on us. It brought back visions I’ve seen in movies of people being miraculously healed who were in wheel chairs. It was very moving and I almost started to cry. Yet, it was a very peaceful feeling and that lasted the rest of the night. After the service, we drove around to look at the Christmas lights and I actually felt “happy” or as happy as I am capable lately. I came home and The Sound of Music was on and of course, even though I’ve seen the movie a gazillion times, I had to watch it again. What a movie!
12/20/12 – Thursday – It’s Christmastime again, not that it means really anything to me. I had felt so much better yesterday, it was amazing, both physically and mentally. Mostly because I felt stronger, but that seemed to dissipate as it usually does. Today I woke up with that unbearable pressure in my abdomen and back and tried to ignore it. Yesterday I spoke with Stacey by phone to ask her opinion about whether or not I should speak to a disability lawyer. She basically said that unless the MRI can document something wrong, I will probably be turned down. She went on to say that it is really up to the doctor and the notes whether or not I will receive disability. I do know that this condition that I have could still eventually be relieved, but who knows. In the interim, I feel horrible almost all the time except for an occasional reprieve of the symptoms somewhat. Nevertheless, she kept reminding me that this type of disability was not temporary, and I kept assuring her I understood. I wish I had not even spoken to her because she upset me so much that today I was in a major state of depression. The “what ifs” kept coming to mind about “what if” I don’t get better then how will I support myself, etc. The whole conversation upset me to the point that I decided I will only call her if I have a question about the birds, etc. It has taken me all day to at least feel halfway decent and I am still profoundly upset, but mostly because my right leg does not feel as strong and I just feel physically numb, with the burning all down my legs again. I think I did a lot of cleaning today and that is probably what did me in. I will go out tonight to see some people at a meeting so I won’t isolate and continue on my pity pot path.
Pressure, Numbness – 12/19/12 – This morning I woke up feeling less stiff and off-balance, but with the same intense pressure on my belly. I am beginning to think that maybe I should just accept that this might be a permanent condition. Basically there is no answer as to when or if the numbness, burning and weakness will improve, so it is just a waiting game. I find that when I just ignore it—or about as much as I can—I feel better and can stop focusing on everything bad. Actually there are some improvements, most notably, I can bend over and turn sideways because the actual incision and the back itself are much better. But, internally—the nerve root—is the last thing to heal and it can take up to a year or more. My guess is that the EMG will basically show nothing. The PT made a very important point; if it were peripheral neuropathy, it would most probably be bilateral, but my weak leg is unilateral. I think the test will just prove that the whole problem is still the spinal nerve and it just has to heal on its own. I remember when I had a root canal about a year ago and for a long time I kept complaining that I still had pain, to the point where the dentist went back in to check. He said nothing appeared to be wrong with the tooth and sent me on my way. Boy, I was so aggravated that I thought for sure that he screwed up the procedure. So, since there was apparently nothing else that could be done and they could not find a reason why my tooth still hurt, I had to just live with it. Well, a few months ago when I was brushing my teeth, I suddenly realized that my tooth did not hurt anymore; the pain was gone. It had steadily been getting better, over time and so slowly that I didn’t even notice it. Then one day, it became apparent that it felt normal. I’m starting to think that this is what will happen with this; over time the symptoms will diminish to the point that it will be gone. The question is, can I wait until that happens. I am thinking of filing for disability because my doctor’s nurse seems to think that I will be able to return to work soon. I just don’t think that is reasonable with such a physical job as I have. I will literally fall out in the massage room because of this weak leg. This is not to mention that I can only stand for so long without the fatigue and burning setting in on my legs. She is being a bit of a hard ass about filling out the required forms. I’m still searching for a “reason” for this happening and I just don’t know for sure. As of now I am thinking of calling my primary care physician to put me on some antidepressants, just to get me over the hump. I went to a meeting today and I foolishly thought that I could walk without my cane so I held it up when I came into the room. That was not a good idea because I almost fell into my chair, totally losing my balance. Then for the first half of the meeting, I was on the pity-pot. By the end I felt a little better. It is true that for some reason, I am “walking” better today, but not well enough to do it without a cane for protection against losing my balance. But on a bad note, the burning sensation in both thighs is intense again and I dont not know why. The problem is that these brief periods of progress always seem to be followed with a regression the next day. Each day is a new beginning, as if the progress from the following day never even happened and is so discouraging. As of right now, at 4 pm, the burning in my thighs is very intense and uncomfortable. But if it comes down to being able to walk better and having burning nerve pain, I’ll take the walking better part.
12/17/12 – Monday – I get the results of the MRI and they are negative—nothing out of the ordinary. In fact, everything looks great. The doctor reviewed the MRI with me and it really looks like everything is nice and opened up and not squished the way my spinal nerve was before. Then why the hell is my right leg numb and cold; then why am I still having all these terrible symptoms? I have no idea, and worse yet, neither does the surgeon. In the meantime, she ordered an EMG as a diagnostic tool to see if the signals are getting to my muscle. Actually there is really nothing that can be done if that is the case. In the meantime, I filed a continuation of disability form until my next appointment, January 7th.
12/18/12 – Tuesday – I had my PT appointment with Kevin and he said that actually he hopes the EMG shows nothing because then this will prove that all these symptoms are a result of a badly damaged nerve root, which hopefully will eventually heal. Healing takes forever with nerves, so I’ve been told and I have to be “patient”—that famous word again. If it is a true peripheral neuropathy, there is no cure, but it is good to know and not just guess. Again, I sure hope my damn insurance company covers this. After my PT I go to see my knee guy (not the surgeon) who gives me another shot of cortisone in hopes of reducing pain and inflammation. He also gives me a new knee brace to try to stabilize my knee. I then go to Walmart (my home away from home) to pick up a ball to use for my PT. I also stopped into Serenity to return the books that I purged and that started me on a path to depression. When I go in there I see people working and busy and it just makes me feel useless. I get scared that I will forget how to do massage. Now I am home and feeling lost and sad so I will do what I always do when feeling this way; get ready for bed. At least in bed I enter a land where I am not “crippled”. A few weeks ago I had a dream that I was running over to get something as easily as I used to do. Then I woke up and the reality hit; that is not happening, at least not anytime soon. The other problem with sleeping is that I have to get up at night and in the morning which is torture because of my stiff and painful legs and knee, not to mention that I am wobbly and unsteady on my feet for a while. Anyway that is it for the day. Actually maybe, just maybe, I feel a little less numbness in my abdomen and back. But that is a BIG maybe so we’ll see how I feel tomorrow. Remember I said that I can deal with the healing taking a long time, as long as I see some progress. So, I have to be on the alert for even the tiniest of advances. All those small progressions add up to total healing, even if it takes a year or more. I just need to keep my spirits up and not do things that cause me to feel sad; i.e., going over to Serenity too much.
12/16/12 – Sunday – I woke up this morning feeling just as bad as usual, as if yesterday’s “progress” never even took place. Every morning is like a new beginning, and back to square one. Each night I go to bed and pray that I will have at least some indication that I am getting better, but that is never the case. Today, I am super unsteady on my feet. My renter left the house and forgot to deactivate the alarm system this morning. I was sitting in my office and suddenly realized that the alarm was about to go off so I had to literally “jump up”, without my cane, and “run” over to the closet to press the deactivate button. I almost fell and was so off balance but I did it. However, it depressed me to no end because a simple movement like that almost resulted in me falling. I do not know why I am so unsteady today and it is very discouraging. My knee is painful and does not support me properly, probably due to the weak leg. Last night my right leg and especially my foot were freezing cold to the touch. No matter how many socks I put on, my foot is just plain COLD. I had a measure of peace yesterday when I went over to Serenity and picked up some paperwork, then on to Starbucks. That seems to be the only place that I somehow can relax and feel like it all will work out. I am desperately trying to maintain some measure of peace today, because that seems to help, but it is hard when you are walking all crooked and wobbly. I am seeing the neurosurgeon tomorrow who will review the MRI with contrast. I am not sure if I want something terribly wrong to show or not. If there is something amiss, then maybe they can fix it. But if nothing shows up, then what the hell am I going to do at this point? I am so tired of being consumed with my physical condition and I am beginning to isolate. I’ve missed two Christmas parties recently because I just didn’t want to be walking with a plate of food and my stupid cane, not being sure if I would fall and make a complete fool out of myself. I am starting to avoid social situations and staying home more. My world has become increasingly more and more narrow. I am so sad, words cannot describe it. I pray to God that there is some hope tomorrow because I am coming to the end of my rope.