March 29, 2013 – Forgiveness
For some reason I was thinking of all the screw-ups perpetrated by so many doctors and I started to get angry and resentful. It first started with Dr. H, who basically blew me off when I told him numerous times, that my whole body was killing me. Looking back, this was due to the spinal stenosis. He kept ignoring me and ordered a stupid regular x-ray, when he should’ve referred me out. Then when I went to Dr. G, he said he didn’t want to step on the toes of Dr. H, so again I was blown off. I finally referred myself to Augusta Back where the travesty continued. First I saw Dr. B, a D.O. who finally ordered an MRI. It showed spinal stenosis so he did epidural steroid injections, which worked a little but not enough. He then referred me to the surgeon and I then had a lumbar laminectomy, which was successful but didn’t address underlying symptoms too. In fact, I was worse as time went on, only to be told over and over that the spinal nerve just had to heal. Then after 2 months, they finally started to say that there was nothing that could be done and they had no idea why I wasn’t getting any better. At that point, I was hobbling with a cane, with no balance, causing me to fall at the drop of a hat. My foot was dropped and my leg was partially paralyzed so that I literally could not lift it up without using my hands. They dismissed me to a pain management doctor because I was also suffering with unbearable nerve pain in my abdomen, back, both legs and feet. My life turned to a living hell. Luckily the pain doctor told me he could not help me either. At first I was angry but now I am so lucky because I finally got sent back to the original doctor, Dr. B. He actually took time to stop and think about my symptoms and decided that it just might be coming from the thoracic spine. Sure enough, after a thoracic MRI, he discovered a small meningioma, pressing on T3 of my spinal cord. This was what was causing all the symptoms, including a weak right leg and all that nerve pain. I finally decided to go back to the surgeon, who, in my estimation owed me a huge apology for not looking any further for an explanation regarding why the hell I could not walk. She performed the surgery, which was much, much, more painful and complicated than the first, but Dr. B was right; the compressed spinal cord in the thoracic area was the culprit. To this day, I cannot fathom why the surgeon treated me like I was a nutcase and did not bother to investigate further. It would have been so simple to just think about it and order a thoracic MRI. I do not know why that was not even in the realm of possibility for her and why nobody else would actually listen to my symptoms. Here’s the thing, I could spend all my time being angry and resentful or I could be extremely grateful that at least I found the doctor who finally got it right. I wasted so much time being crippled and sad, so I don’t want to waste any more with being resentful. I prayed to God for me to find a doctor who could help me and my prayers were answered—that’s all I know now. I am grateful over and over, each time I do a simple thing like walk across a room, unassisted.
February 8, 2013
I have been doing some massages lately. It is literally a balancing act. I find when I take my shoes off, I have better balance. But today I had a hot stone massage and I was worried since yesterday. First of all, I have to fill up the cooker, which entails bringing it to the sink and carrying it back. I had to ask one of the other therapists to do this for me. Then during the massage, I was nervous that I would lose my balance and fall in the room because you have to go back and forth to get the stones. It is much easier just doing a straight massage. I almost lost my balance once and it scared me to pieces but I caught myself in time. The whole massage I prayed over and over that I would not fall and I didn’t but I got out and told the receptionist to not book any hot stones for me at all until I am better. I saw the original doctor that I saw back in September and he actually took at lot of time to offer me some solutions. In addition, he is willing to explore more and thinks (as I do) that maybe, just maybe, the surgeon did not get all the areas decompressed. This is why he ordered a new MRI (I hope the insurance company pays for it) of the thoracic spine. I also still think that S1 is involved and he agrees. The surgeon I went to a few days ago told me there was nothing he could do but agreed to look at the MRI disk. As of this day, he has not done so. I need the disk to bring to my appointment with the new surgeon. Prior to the other appointment I was already planning to be told nothing further could be done, but he at least suggested that my weird symptoms in my stomach and back could be coming from the Thoracic spine. Sometimes it seems that I am getting very, very, slightly better (the belly does not feel as bad tonight) and my walking seems slightly better. Nobody at the spa has any idea that I feel so bad and that it is a miracle that I am able to do any massage at all. They say, “So, you’re back.” And I say, “just on a very limited basis.” I feel like a charity case when I am there and I get the impression that one of the new girls resents me. This little bit of work may dry up soon if the bookings don’t pick up, so we’ll see. I also have to try to believe that I will get better, eventually. But for today, I have to accept the way I am (but just for today). Tomorrow I have to tell myself the same thing; one day at a time.
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.
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.
12/16/12 – 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.
12/14/12 – 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.
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.
Discouragement – 11/28/12 – Wednesday – 2nd entry – For some inexplicable reason, after doing the PT, going to a meeting, and walking in Target, my legs, abdomen, and back are unbelievably numb and tingly. I had to go back to the house suddenly because I felt so terrible I couldn’t really stand up too much longer. It is so upsetting and discouraging. I actually felt halfway decent today, but as of right now, my body from my waist down is totally numb. I’m back to thinking in a negative way again. I told myself to be positive but I’ve had it for the day. I think I will get the chores done early and retire to my bed to read. At least if I enter a world of fantasy, I don’t have to think about myself. At this point I really am wondering if this will ever get better. One day I seem to be making progress, and the next day I feel no better than I did before the damn surgery. Sometimes I wonder why the hell I even had the surgery in the first place. I actually feel worse than I did a few months ago. I am having trouble finding a reason to go on with this whole thing. I hope I feel differently tomorrow!
11/30/12 – Friday – I resolved to be in a more positive state of mind because I know it does affect the healing process, or so I’ve been told. But, as usual I awake with stiff and numb knees, quads, abdomen, back, etc. The only good thing is that the cortisone shot in my knee seems to actually have helped so my knee does not get “stuck” in one position when I sit causing me to limp until it straightens out. I must be at least grateful for something and I truly am. But, my right leg is just so damn weak that I am constantly off balance and must limp. At first I thought my limp was due to the uneven hips but actually it is because my damn leg will simply not support my body. I am very self-conscious when I have to use the cane, but I limp less and don’t feel scared of falling as much. The fear is still there though. I rant and rave today and finally decide that there should have been at least some sort of improvement so I call the doctor’s office and speak to the nurse (of course) who seems somewhat concerned. That surprises me because I am sure she will say, “Oh, it is too soon so don’t worry.” But she decided to put me on a steroid pack to help relieve inflammation. It is day 3 and there is really no improvement so far. Actually I thought I was walking much, much better on Saturday but by Sunday that progress seemed to have disappeared. Maybe it was just wishful thinking or maybe there was an initial improvement, but I don’t understand why sometimes things seem better and then I wake up back to square one. When I get up and I have trouble walking, with the same numbness, I get discouraged.
Positive Mindset: 11/27/12 – Tuesday – Today I went to the orthopedic doctor I’ve seen numerous times for knee injections. He is the surgeon’s partner and actually I like him a lot. He ended up giving me a cortisone shot which will help with the stiffness and pain. I was in a better state of mind for the rest of the day. I went to a meeting and felt so much better.
11/28/12 – Wednesday – This is the first day of my physical therapy. I am in a good state of mind because I will hopefully get the OK to do some more exercises. He says I am more flexible than the average person, which is a good thing. But, of course, he cannot give me any time-frame for my nerve root to heal. Until that heals, all the therapy in the universe will not bring my dead leg back to total function. It is a slow process, as I’ve been told over and over. But, on a good note, he said in about 6 months or so he thinks I should be back to normal. Six months is a long time, but as long as I continue to see progress, it is OK with me. He said to walk slowly so the nerve pathways can learn again—if I walk too fast (which is really not even an option at this point) my nerve becomes “confused” so keep it slow! I went to Target to walk around with the shopping cart (buggy down here) but for some reason, my legs felt like someone had injected an anesthetic agent into them and I was walking on dead tingly legs; very discouraging. I decided to go home and work on the computer. It is an effort each day to stay in a positive state of mind but I am going to try. I cannot guarantee that I will be successful. I’m scared that I will never be able to return to the life I knew; I am scared that I will be permanently disabled. You can’t play the “what if” game. My biggest problem is between my ears. Life constantly changes but that is the nature of life. I don’t know what the future will hold so I have to just take “one day at a time”.