Every so often, I find myself getting impatient with someone ambling across the street with a cane. It’s so easy to forget that less than a year and a half ago, that was me. Sometimes when I quickly get up from a seat, and stride very briskly to the other side of the room for something, I find it amazing. Unlike most people who are not impaired, I am acutely aware of how well I simply “walk” and never take it for granted. I know that just plain “walking” without losing balance, fear of falling, or having to hang onto the walls is a gift. Sometimes I become aware that my feet, belly, legs, and back are no longer numb and tingling. I look at my right leg, which was withered as if I had polio, and see a nice, plump muscular leg again. I know that not having my crutch parked beside my bed for help in the middle of the night, is something I never thought I would experience again. Just like anything, it is human nature to not appreciate what you have until you lose it. Things that I thought I would never do again, such as running (a run/walk now) I am doing. I was a prisoner to my disability, never being able to just pick up and go, and I will be forever grateful for that miracle bestowed upon me. OK, if I had not persevered and kept insisting that something was wrong with me, and not just accepted a life of an invalid, I would not have had that “miracle.” So, it all went together and my tenacity was in itself, divine intervention, I believe. When I remember to practice gratitude and appreciation for how I was literally given my life back from the brink, I have a better day. When I focus on the same old petty, annoying, neurotic insecurities (which I will probably never totally lose) I am lost. I know that I have been given a daily reprieve and there are no guarantees in life, but for now, my life is infinitely better than it was, and I cannot forget that.
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 29, 2013
Last Monday I agreed to do a spa service and massage on Saturday. Saturday morning I woke up practically unable to walk at all. My right leg kept giving out on me and I was going to cancel the service, but as the morning wore on, I started to walk decently. I was very nervous about the service but it came off OK. I still feel like a freak when I “walk” because if I don’t use my cane, I have to limp extensively. But in the massage room, I could at least hold onto the credenza and wall, or lean a bit on the table. I took off my shoes and I walked much better with better balance. I think I did a good service and the client gave me a $25 tip; she also seemed to enjoy it. So, apparently, if I am not feeling too bad, I actually can do massages. I sent out some texts to clients who said they will call, etc. One client said she is so glad that I am back to work now—little does she know that I am really just as bad as I was a month ago because there is absolutely no improvement at all; I just learn to “live with it” for now and do the best I can. I went to a meeting and everyone has a pitying expression and say, “I’m so sorry” to me over and over. That makes me feel so terrible and I want to not go out in public any more. Each night I pray that I find a doctor to help me feel better and at least get a little improvement, but each morning I awake with the same exact symptoms and feel so let down. This morning my clock radio played “Evil Ways” by Santana and it brought back memories of me dancing to that when I was a teenager. I have to be careful to not keep reminiscing because it brings on depression, something I cannot afford. I am also dealing with lots of jealousy of people doing just mundane things and not thinking about it, such as running, walking normally, just living their life without having to constantly be monitoring their every move or their body. I think the people in the Midday Group are used to me being “crippled” and they don’t keep telling me how “sorry” they are and that makes me feel more accepted and less freakish. I am scared to death that this new doctor will give me the same old song and dance about how he cannot help me and I will simply fall to pieces at that point. God, please help me find the doctor to help me get better and get a life back.
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!
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.
12/13/12 – Thursday – I seem to feel OK this morning as far as side effects, but of course the pain and numbness it still present. I don’t know what I was expecting—-maybe a miraculous recovery, but I feel really sore this morning. I will take the other pills today and see what develops. Later in the morning my resolve breaks and I just feel like enough is enough regarding the intense pressure and numbness in the abdomen and back. I start out by saying that this is ridiculous, and it builds up to a full-blown meltdown, complete with ranting, raving, vows of suicide and calling the doctor’s office yet again. Of course they have to take a message because there is no way to actually get someone on the phone immediately. The nurse finally calls and says she spoke with the surgeon who said I need to get another MRI (hopefully the insurance company will pay for this) before my Monday follow-up visit to see if there is anything wrong. At least she is on the same page as I am because that is what I was going to suggest. No MRIs are done in their facility on Fridays so I have to get it done somewhere else. In the meantime, I have to get blood work done downtown at University Hospital, which makes me nervous to drive there. But, I finally make it after getting a little lost and I am proud of myself for keeping calm. The MRI is scheduled for tomorrow on N. Belair Road, which is easy to find, right in Evans. I’m not sure if I want it to show something drastically wrong (sponge left in, or bone out of place, or more narrowing) to explain why I have made basically no progress. If everything is as it should be then it is even more discouraging because there is no explanation as to why I still feel these horrible symptoms. On the other hand, if there is something drastically out of the norm, then it would at least give me hope that this can be corrected. There it is again, that word HOPE. If they keep telling me that I just have to be patient, then I will lose all hope. I need HOPE at this point to continue on. I simply cannot or will not continue to live my life as half a person. An old friend once told me that his wife had back surgery years ago and she just would not get better. They did an MRI and discovered to their horror that a sponge had been left in. She then collected a huge sum of money in a settlement. That has stuck with me and who knows? I am not looking to collect money (although that would not be so bad)—-I am just looking to feel better. Nobody knows how terrible it is to wake up every morning and have pressure and numbness in your belly, back, and legs with no end in sight. Nobody knows how devastating and frustrating it is when there are no answers in sight and your whole world is rapidly going down the toilet. I pray to God for help but God helps in his time, not mine. Please Lord please get on the same page as me. Thanks.