February 17, 2013
Well, lo and behold, the MRI ordered by the D.O. in the practice revealed a thoracic meningioma at T3. My question is why the hell the surgeon did not explore that possibility too. I read an article on the Internet “Paraplegia due to missed thoracic meningioma after laminotomy for lumbar spinal stenosis.” It says, “Surgeons should know that a silent meningioma can aggrevate neurological symptoms after lower lumbar spine surgery and should inform the patient.” OK, apparently my neurosurgeon did not know that. All this time, her PA and nurse kept saying that they have never seen anything like this before. Well, you are a nurse, not a surgeon so don’t say that to me. Her PA kept smiling at me and saying there was nothing more they could do. When I asked if there was additional testing they should be doing she said, NO. What the blank (not the real word) are they thinking? Secondly, all this time I was not getting better should have alerted them that maybe they should do an MRI of the thoracic region. This to me is negligence based on not ordering the proper tests, not knowing that a silent meningioma can aggrevate symptoms after a lumbar laminectomy, and just dismissing me. If the D.O. had not been a good doctor, who knows how much longer I would be suffering. After a month of me getting worse, she should have ordered an MRI of the thoracic area not one of the area she already operated on. I have an appointment with her tomorrow, but I do not want to use her as the surgeon again. But, I absolutely need to have this taken care of ASAP because I am suffering and cannot continue to live with this pain, stiffness, lack of balance, and not being able to walk properly. It is a nightmare that I hope will end soon and there will be a good ending finally.
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 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.
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.
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.
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.
12/16/12 – 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.
Disability – 12/9/12 – Sunday – Basically I am feeling the same as yesterday, physically. I actually thought that my toes on my right numb foot curled better, but maybe that was my imagination or wishful thinking. It gave me a little hope. You know if I just had even small improvements each week that would give me something to hold onto. But as I usually do, I do too much I guess. I cleaned my bathroom (which took forever because I have to move so slowly), did my exercise, went to the gym with more exercises, and went to Walmart. By then my right leg was feeling so exhausted that I could barely walk. This is what always happens; I feel a little better so I overdo it and pay the consequences later in the day. This is what caused me to have my meltdown the other day—having to do chores by myself and paying for it. I started to get on the pity-pot again because I am really scared that I will have to go on permanent disability and believe it or not, I don’t want to. I just don’t think that I can continue to feel so physically sore and unbalanced each day and go on with this. I can now empathize with Aunt Gladys who had severe pain each and every day, but lived with it. She had numerous unsuccessful spinal surgeries, yet she always maintained hope that helped her go on. She was such a trooper and I always admired her, but now even more for her courage. A number of months ago I was in a funk regarding my job because I was burnt out. I kept saying out loud that I didn’t want to keep doing this job. I kept trying to think of a way that I could go on disability—maybe mental, maybe back, who knows! But the mental disability would stigmatize me and my physical problems were not that bad. But, be careful what you wish for, it just might come true. Remember when I wanted to leave my job in Manhattan and somehow, in a horrible twist of fate, I got laid off a year after the 9/11 attacks. Now, in another ironic twist, I am facing disability. I kept saying, “OK God, this is not how I wanted it to be.” But then I thought that I never really specified how I wanted this achieved so, God has in some ways given me a way out, but not how I wanted it. Disability (if you’re not faking it) means just that YOU ARE DISABLED and unable to work. It does not mean that you get paid for staying home and then can go gallivanting around town, feeling great. No, I am paying for this and I wish to God I never had this. I thought I’d be one of those 60 year olds in great physical shape, exercising and running forever. I never, in a million years fathomed that this would be my life. I am trying to maintain hope that this will get better, but I am finding it hard to accept that maybe it won’t. There is not one day when hope lasts. It ebbs and flows and I never know when a feeling of hopelessness will overtake me or when I can see some light at the end of all this. It is a roller coaster world each day. I must continue to pray for some type of miracle.