Recently, I started thinking that almost 2 years ago I had a life changing surgery. But the more I thought about it, the more I realized that it was actually almost 3 years. I couldn’t believe that time had just slipped by so quickly. So, on March 1st 2016 it will be 3 years since I was released from a living hell of a crippling illness. Everyone knows HOPE is everything, but sometimes no matter how you look at it, HOPE seems to be nowhere. After having lower back surgery, I inexplicably began to have trouble walking. I had a severely dropped foot, constant nerve pain, and a partially paralyzed leg. HOPE began to slip away after exhausting all tests and follow up MRIs, even 2nd opinions, only to be told, “We just don’t understand what is wrong with you. We have never seen something like this before.” Each morning I would awake with hope that a miracle happened and somehow I was getting better. But as soon as the realization came that nothing had changed and I was even worse, an incredible despair and hopelessness would engulf me. There were so many days that I wanted to just give up but I kept saying, “Maybe things will be better tomorrow. If you are thinking of offing yourself, put it off until tomorrow and see.” By employing that tactic, I managed to stay in this world to see a miracle happen. I have no doubt that this miracle was from my persistence and constantly not taking NO for an answer, a doctor who actually sat down to think about my symptoms, and God. I don’t think I would have gotten better if all of these factors were not aligned. By God’s grace my doctor ordered another MRI and found the culprit, a benign spinal tumor compressing a portion of my thoracic spine. Faith is a beautiful thing and when life is going well, it is easy to have it. The true test of faith is when life is life—when you feel that all hope is gone and you cannot see your way out. So many people are waiting for a white light and burning bush to prove the existence of God, when He is there all along. I believe my horrendous experience was necessary to bring me to my knees and start believing. I do not think this was an accident and that there are no coincidences in God’s world. God was working in my life for a long time before I noticed it, even meeting Joyce and Bill, who introduced me to their church. If my son had not had the breakdown, I never would’ve met them. I think God was patiently waiting for me, only I needed the experiences I endured to discover Him. I still pray and pray for my boy, and sometimes, when I am in a bad space, I wonder if God is really listening. Then I remember I must have faith, which equals hope, which equals life. I do not know what the future holds, and I must remember that I am not in charge. It is when I turn things over to Him that I achieve that elusive gift of peace and serenity that I am constantly seeking.
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 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.
January 15, 2013 – Tuesday
For some reason, my pain level on Sunday was off the charts. No matter what I did or took, I could not get it to abate. But by Monday, it felt a bit better, maybe because I took a Gabapentin for the nerve pain. However, that halfway decent feeling did not last. I saw the famous pain management doctor who proceeded to rattle off, in a very stiff and uncompassionate way, all my options. He didn’t even call me Marilyn—he called me Ma’am. He basically told me why nerve blocks, steroid injections, etc. will not work for the problems I have. He did, however, give me a prescription for Lyrica, a new drug for nerve pain and send me back to the original doctor who did my steroid injections. I took the drug last night and experienced dizziness (a side effect) until early this morning, but it seemed to lessen the nerve pain a bit. The dizziness wore off completely about an hour after I was up, so maybe that was not so bad. What amazed me was that there was a total lack of empathy on his part. What happened to the art of the bedside manner? I just don’t remember doctors being so aloof and distant when I was a child. Now you call the office and you NEVER get through to the actual doctor, just the nurse, who relays (supposedly) the message to the surgeon. Since my surgery 2 months ago, I have seen the surgeon exactly 1 time and that is it—pretty sad! I submitted a letter to the surgeon and the nurse (more for me to vent than anything) telling them how shocked I was with their determination that I was “work ready.” I sure don’t expect any kind of response at all and I am not even sure if the surgeon ever got the letter at all. But, I felt better. I had a massage today too but felt very mentally bad afterwards. The reason is that I just had to admit that I may never return to that line of work at all. I cannot ever see that happening because you have to be physically able and I am not at all. I also met someone I knew at the Y who is the epitome of physical fitness. She was aghast to see me meandering slowly with my cane out the door so she wanted the scoop. I told her my sad story and she said she has been advised to undergo spinal surgery due to constant pain in her legs and arms, etc. I said she should think long and hard about that because back surgery is really hit or miss. There is an alarmingly high percentage of failed back surgeries (Post-laminectomy syndrome) where the patient has no relief or is even worse off than before. I think I fall into the latter category. If I had known this I never would have had this surgery. Now I just have to try to find a way to get better, or at least accept this hand that God has dealt me.
12/20/12 – Thursday – It’s Christmastime again, not that it means really anything to me. I had felt so much better yesterday, it was amazing, both physically and mentally. Mostly because I felt stronger, but that seemed to dissipate as it usually does. Today I woke up with that unbearable pressure in my abdomen and back and tried to ignore it. Yesterday I spoke with Stacey by phone to ask her opinion about whether or not I should speak to a disability lawyer. She basically said that unless the MRI can document something wrong, I will probably be turned down. She went on to say that it is really up to the doctor and the notes whether or not I will receive disability. I do know that this condition that I have could still eventually be relieved, but who knows. In the interim, I feel horrible almost all the time except for an occasional reprieve of the symptoms somewhat. Nevertheless, she kept reminding me that this type of disability was not temporary, and I kept assuring her I understood. I wish I had not even spoken to her because she upset me so much that today I was in a major state of depression. The “what ifs” kept coming to mind about “what if” I don’t get better then how will I support myself, etc. The whole conversation upset me to the point that I decided I will only call her if I have a question about the birds, etc. It has taken me all day to at least feel halfway decent and I am still profoundly upset, but mostly because my right leg does not feel as strong and I just feel physically numb, with the burning all down my legs again. I think I did a lot of cleaning today and that is probably what did me in. I will go out tonight to see some people at a meeting so I won’t isolate and continue on my pity pot path.
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.
Better State of Mind – 12/12/12 – Wednesday – This is a date that, according to reports, will not come around again for about another 100 years. For some unexplained reason I wake up in a better state of mind. I’m not sure why because there is never any specific explanation, but it seems I am less numb. Again, this may be my imagination, but I will take it. Since I feel decent, I do my exercises and walking outside today, in the morning before taking a shower. I am very productive in the morning. But it seems that when I do a lot of exercises, I end up even more numb. I am trying to just ignore this so I get ready for a meeting. Afterwards I do some paper work for the spa at home, file bills, pay a huge bill in full, order a Christmas present on line for my son and family, etc. The bill was for almost $800 and was a smack in the face to open my mailbox and see that. But after speaking to the billing department I realized I had to bite the bullet and pay it. But even though I feel physically lousy as I usually do later in the day, I persevere and try to keep my spirits up. I was prescribed Gabapentin, a drug for nerve pain, a while ago, but never took it due to reading about bad side effects. But I then saw on the Internet that many people take it with good results. The nurse said I should try it so I did, before going to bed.
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.