March 18, 2013
It is amazing how twelve days can make such a world of difference. I am no longer getting home care because I am so much better and driving too. So many people take just plain walking for granted, and so did I, until I couldn’t. This whole hellish 6 months has actually given me a new understanding of people with disabilities. It has taught me to not take anything—even something as simple as walking—for granted anymore. I know that there is a finite period of time on this earth and I MUST live it to the fullest. I have to just conclude that this is a miracle of God that was bestowed on me and that there is a lesson to be learned. I have started back to the gym just to walk on the track (because there are handrails, just in case; I still get nervous when walking) and have also started doing some of the P.T. exercises I was doing with the therapist after my last surgery. I am very, very, determined to get back as much function as I can. At this rate, I think I will be good in a few months and will continue to improve more and more as time goes on. I finally have HOPE, something I have not had in 4 months. Every day when I can easily maneuver around without losing my balance, I am amazed, and who would’ve thought that something so seemingly simple could give me such joy? When I see people that knew me before this latest surgery, they say I am different, almost glowing. I feel that I have a shot at a life now, but I will not forget the months I spent as disabled, hobbling around with a cane, ready to fall over at the drop of a hat, not being able to lift my own leg into the car, being a menace on the road because my leg was sometimes unresponsive. I drove my car again last Wednesday and at first I was not used to the sensation of actually having power in my leg. But, after a few minutes, I got the hang of it and reveled in the feeling that I could stop perfectly whenever I wanted to. Before this surgery, I drove with my heart in my throat because sometimes my car would lurch forward when I didn’t expect it, almost hitting the car in front of me. I had so many close calls that I was thinking of not driving anymore, but I just vowed to be extra, extra, careful, putting my foot on the brake way before I had to and pressing hard. But, even then, it was such an effort to just lift my leg from the gas to the brake and back again because of extreme weakness. It is a blessing to just be able to drive normally again. It is almost as if I have awoken from a coma and now have to learn to walk normally again. My right leg was so atrophied from lack of proper use of the muscle but it is already starting to get some of the tone back. I am so grateful that words cannot even describe it. I find myself smiling more at people now and that in itself is miraculous.
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.
February 9, 2013 – Saturday
Well, the new year is starting out like 2012. Already I have gotten a huge bill in the mail for the new round of epidural steroid injections, which may or may not work. Considering that I have almost no money coming into this household, it is very frightening. I did one massage yesterday and one today. I have been taking a new medication for the stiffness in my legs and it seems to work somewhat but as usual there is a side effect of weak, wobbly legs. I did the massage today with that kind of balance (or lack of balance) but I miraculously got through it. I kept watching the clock and hoping it was over because I am working in fear. It is amazing how many things I took for granted when I was a “normal” person. I went over to Starbucks for a treat and I wanted to sit in a nice comfortable cushioned seat but it would’ve entailed me maneuvering past multiple people with my cane, my drink, my purse, and my book—that was not happening. Then I wanted to go into Krogers to buy some mozzarella cheese but thought about how long and arduous a process that would have been requiring me to find a handicapped spot, park, drive through a crowded parking lot, get a shopping cart (even though I would normally not need one for just one item, but it helps me walk), etc. I then made the decision to just pass on going in, even though I really wanted that cheese for dinner. Who would’ve thought that I would get jealous of people just walking or driving without even putting any thought into this simple act? Everything is harder when you are disabled, and that is what I am at this point. I have to think twice before embarking on any activity, even simple things. I will continue to pray for God to help me find a solution or if not, to accept this because I cannot live in bitterness or anger; then the surgeon has won and I will have lost more than my ability to walk.
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!
12/22/12 – 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!
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.
12/14/12 – Friday – I wake up the same as usual, no change. I am still having the numbness, tingling and burning, which is so depressing. I am trying to maintain some sanity today so I put my back brace on and it feels a little better. It somehow alleviates the pressure on my belly when I wear that. In the meantime, I will have the MRI today.
12/15/12 – Saturday – I had the MRI with contrast yesterday and that was uneventful. I then went to Walmart and the numbness, burning, and tingling in my legs was almost unbearable. I learned from the Internet that this is actually a form of pain, but not in the traditional sense; it is NERVE pain. It is almost if not more unbearable than regular pain, as most people know it. I keep saying, “Well at least I’m not in pain. I just have the numbness.” But this is not the usual numbness that I originally had, it is a deep, searing, burning, numbness and is a type of pain. Yesterday I finally identified this as a “burning” sensation. It is horrible. In reading over my entries I see that I have had days where I was not feeling bad at all since the surgery. I don’t understand why I felt better in the beginning, right after the surgery, than I do now. Also, every so often I feel a lot better and my leg is stronger. I don’t understand why the numbness seems less and then the next day or even later on in the day, I am back to the same burning, tingling, numbness as usual. Maybe it is a good sign that it occasionally abates, but I am at a loss. Last night I was absolutely convinced that the doctor screwed up and injured my spinal nerve which is why I am not progressing much or even at all. But I am resolving today to just accept this day as it is because I have no control of anything at all at this point until Monday when the doctor can review my MRI. I spoke with Jane last night who said that the MRI with contrast will absolutely show everything that is going on. If there is a problem, it will show. I don’t want to have to go back into surgery but if there is something wrong and it is pressing on the nerve, I will do whatever it takes to get better. I’m going to try to be free from self-pity today. We’ll see how that goes. It is amazing how a small bit of improvement can cause such elation so maybe if I can look for something that has gotten better I will have a better day. I will keep praying.
Later in the day: I decided to not take the ibuprofen because it doesn’t seem to work on nerve pain. It works great on regular pain, but it definitely does not stop the numbness and tingling. All of a sudden, the symptoms seemed less. Maybe it has something to do with me going to Starbucks (I’m going broke) and just “relaxing” as much as I am capable, but I felt a lot better both physically and mentally. I then took a dose of the Gabapentin which is for nerve pain. I don’t know but maybe I feel a tad bit less terrible. I will take another one tonight before bed and who knows, maybe, just maybe, I will see some progress.
Faith – 12/6/12 – Thursday – As usual, I wake up feeling stiff and sore, but try to put a positive spin on the day. It actually was a good day because I was busy up until 4 pm. I decided to miss the Christmas party tonight. That was not my original intention and I was going to bake something to take, but as the day progressed I became increasingly exhausted (specifically my legs) and started dragging my right leg. I just kept thinking that it would be embarrassing if I fell or dropped my plate or had to have someone carry it for me. Then if people hadn’t seen me lately, they would be shocked to see how deteriorated I seem, barely able to walk. So, I just said to myself that I have to let my body rest, no matter what. I’m sure nobody was terribly upset that I didn’t show up. I’ll hit a meeting tomorrow and this way, I will rest and not eat like a pig, as I always do with these eating meetings. I made a nice meal here and just relaxed. I sometimes think it is better not to see people who are improving after surgery because it makes me angry. I know that is not the reaction that I am supposed to have but I simply cannot help myself. I mean no ill will for anyone, I just feel angry and jealous, even though I know it is irrational. I also notice that people get sick of hearing how you are not doing very well because people’s natural proclivity is to assume that after surgery you will improve. So, when I tell them I am not doing as well as I thought, their eyes glaze over and they drift away. Nobody wants to hear bad news and I guess I don’t blame them at all. When I spoke with Gail last night she said for me to “hang in there” and go into prayer mode. She said she would say prayers for me too. I prayed and prayed and prayed and sometimes I guess it works. The trick is believing in prayer and God even when there is no evidence that the prayers are working, because it is often not instantaneous, as I would like. But, having faith is the key. Faith equals hope and when there is no faith there is no hope and no hope is death to me.