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.
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.
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.
Hope and Prayer – 12/8/12 – Saturday – A strange day. As usual, I wake up feeling sore and stiff and barely able to walk. I try to put it out of my mind but it is hard. I do my PT exercises and walk outside. Then I go to a meeting, which makes me feel better. Ruth and I go out for coffee (although it is way too expensive) but I do it anyway. That was enjoyable. But, I can never predict how I will feel at any time of the day. Even if I am in a decent and accepting state of mind earlier, that can deteriorate in a matter of minutes if I let my mind go there. Cindy, the renter, went to a Christmas party and looked very nice before she left. I took a picture of her and she said if I were feeling better she’d ask me to go too. I just thought of the picture of me in a skirt with heels on. I would not even be able to walk and even if I could, my legs are so thin they look sick. Then I started to look up nerve regeneration and got more and more discouraged to the point that I am feeling upset again. I am falling into that trap I fall into each day at one time or another and that is hopelessness. All I need is hope and I have it each day usually, but it never lasts. I will get the birds ready for bed and go too. The only problem is that in the middle of the night I usually feel really sore (especially my right knee) so that doesn’t even give me relief. I’ll try more prayer.
No Improvement – 12/5/12 – Wednesday – I woke up in pain because I am laying off the ibuprofen due to my impending facial surgery on the 11th. I really don’t realize how much the ibuprofen helps me. I took the stupid steroid pills which so far have yielded as much of a result as the surgery itself. I do my exercises at home, trying to remember all of them from PT yesterday. I had a little hope yesterday because the therapist gave me some, but left to my own devices, that hope rapidly dissipates. The other night I went to a meeting and saw Frank who had spinal surgery the day before I did. He is doing great and improving rapidly. That stuck in my mind and I know that I should be happy for him yet I cannot help but feel jealous and angry. Then today I went to a meeting in the afternoon only to see yet another person who had surgery last week and is improving. Yet, here I am, 4 weeks out and I have literally no improvement, and I am in fact worse, in some respects. I cannot walk properly and my right leg is weak. I drag my foot and am scared while in the car because my reaction time is not good. It all came to a head this afternoon and I blew a gasket. It started because I was doing my cleaning, which takes me forever. Then I started to get resentful because I thought of Frank who only has to concentrate on getting better and has a wife to clean and cook. I, on the other hand, have to do all this by myself. I cannot just let my house go to pot; it needed cleaning but it wiped me out completely. Then I got angry and resentful that I have to do this alone, and it snowballed from there into a full-blown meltdown, complete with crying and ranting and raving. I called Gail to see if she could speak to Maudy (a spiritualist) and call me with some guidance. I could not stop crying while on the phone, and must have sounded pathetic. This is just too much for me to take on some days, and the trigger was seeing others improving while I am left in the dust with no discernable idea of when or if I will get any better at all. It is also so frustrating that I cannot talk directly to the doctor.
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”.
New Reality – Sunday – I decide to clean my bathroom, even though I am still unsteady. My knee feels slightly better because I am not doing so much bending and flexing during exercise. Even the backwards squats, holding onto something, irritates my knee. I go to the gym and work out in the woman’s section so I won’t be so noticeable. I am acutely self-conscious about my limp and having to use the cane. But I guess it would be even more embarrassing if I fell, hence the cane. Maybe I need to get a distinctive walking stick for some flare! I do the treadmill, some biceps, triceps, shoulders, etc. using light 5 lb. weights. I also try the thigh and hip machine on an extremely low resistance. I am careful not to do anything that pulls on my back at all. All of a sudden I notice my damn knee is back to being painful, probably due to my small squats to strengthen my knee. Again, I am very discouraged. I am laying low today in the house, writing and taking it easy. Yes I could go out again, but I decide to just chill since it is Sunday. It is amazing how I actually wish I were working tomorrow because I am losing my mind with boredom. I love to write but as always, I lack structure in my life, which I so desperately need. My goal is to actually get better enough to start traveling, taking pictures with a new digital SLR, and getting paid with the pics. I am a good photographer and this is what I want to do. But, everything in my life is on hold until this incredible numbness in my legs gets resolved. My left leg is not so bad and not weak, but my right leg sometimes does not even support me at all. I am walking in fear all the time, and so slowly that it makes me feel extremely old. But I have to stop looking at my past and reliving my former self. I find myself saying, “Oh, I used to run marathons and be in great shape. I used to work out every day for an hour. I used to look good. I used to have gorgeous shapely calves, etc.” That does me no good whatsoever. I heard Stacey say that she would tell people that she used to make 100K and have a beautiful spacious home. The reality is that she lost all that and now lives in a nice apartment. My reality is that I no longer run, my right leg is atrophied a little due to weakness, I cannot work out the way I used to and my body does not look the way I want it to anymore. I have to accept this and move on to the next phase in my life. Hopefully, and God willing, my leg will improve as the numbness subsides, but as of now, my life is changed. I do not know when or if there will be improvement, although I’ve been told there will be. I have to latch onto that prognosis and try hard to notice even the most infinitesimal improvements. I never thought that I would take so much pleasure in such small things, but maybe that is why this is happening. My mood can turn around in an instant with just one small improvement in my walking, my knee, less numbness. But, conversely, it can go the other way when there seems to be no improvement or even a setback. I have to learn to roll with the punches and realize that ultimately it is my attitude that will save me.
11/23/12 – Friday – I try something drastic this Friday morning; I go out walking again. I’ve been so scared to do this without a cane since my balance has been so off and my stupid right knee/leg, in its infinite wisdom, decides arbitrarily that it doesn’t want to hold my weight out of nowhere. But I seemed to be walking better last night and this morning. It is a Catch-22 situation; when I don’t walk or try exercising my quads, I don’t have the pain when I go from sitting to standing. Yet, if I don’t use my leg it gets weaker and weaker, with my quads atrophying as well as my calf. My leg then gets so weak that my knee stops healing and I never get better. I simply do not know what the answer is at this point. It is so frustrating because today I was proud and almost happy that I could somewhat walk halfway decently—-albeit on my right toe because of the uneven hips–but not too bad. Then I did some light squats holding on which do not put stress on the knees. Nevertheless, when I sat in my car and went to get out, BAM, same old shit. My knee locked up like glue and I had to wait until I could straighten it out (painfully) to walk at all. Some days I have hope, when I can walk without pain and then out of nowhere my hope is dashed when my stupid knee decides to not work again. So, should I do no exercise and not rehab my back, continue the further deterioration of my right leg through atrophy, or do the exercise and not be able to walk at all afterwards. I pray and pray for some kind of help and suddenly it seems to come in the form of simply being able to walk. I then feel like I have finally turned the corner and then there is the cruelest joke of all, my knee is back to being painful and stiff. Part of the problem is that my leg(s) are still stiff and numb. My knees are especially numb due to the spinal nerve still being inflamed. The continual numbness probably prevents my knee from healing properly. Since the biggest problem is my entire right leg, the knee never gets better. As always people have to comment on my limp and cane (when I use it) necessitating me to explain my problems. I am tired as hell of doing this. I am afraid to get up because I figure my leg will be so stiff I won’t be able to unbend it for a while. It is so sad and I am tired of all this. I go to Starbucks to have a pumpkin spice latte, YUM. That always makes me feel better temporarily. I go home and I feel really good—-the best I have felt in a while. All of a sudden my right leg seems to have strength and I can walk relatively well. Since I feel decent, I decide to do tons of cleaning. I then go over to Janet’s house for “Thanksgiving” and have a surprisingly good time.