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 22, 2013
I had acupuncture yesterday and for some reason, I felt horrendous by the evening. My pain level was super, duper high and I cried. I took Gabapentin about 3 in the morning and woke up woozy, dizzy, and wobbly. It took me forever to get myself out of the house but when I did, I began to feel decent. I don’t know what it was, but maybe it was the acupuncture and it just takes time to see the results. I also sent a letter to my orthopedic doctor for him to possibly sign off on a parking decal for me. It shocks everyone that the NS would not do this for me. So far, no response at all. I also called a pain management doctor that Claudia (adapted aquatics director at the Y) told me about. She wants to hire me as a massage therapist but I told her I just cannot commit to this because of my physical status at this point. Laurie wants me to go back too and I am actually going to do a service this Saturday; hopefully I won’t have any problems at all. But, could I do this on a regular basis, NO. It is amazing how much better you feel when your pain level is not too bad. I say, “Not too bad” because it is never gone, but sometimes it is tolerable. Then I feel almost elated. I also sometimes can walk halfway decently but I am still nervous to go outside without the cane. Maybe I will get better. I have that appointment for a second opinion with Michael’s doctor she used for her back surgery (after someone in Augusta Back screwed up her original surgery). I am not holding any high hopes but I wish that he would at least run possibly a CT scan or something to find out if there is indeed a problem. I don’t know, but I hope that God doesn’t let me down. I want to get out from under this nightmare and live some sort of life again.
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.
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.
Monday, 1/7/13 – I had an appointment with the doctor (PA actually) to talk about my stupid EMG. I don’t even know why the hell I bothered for all the good it did me. I waited an hour just to be called into a room where the medical assistant/nurse/or whatever they are just needed to update my file. I was very wobbly on my feet today and getting into the chair, I fell off. I did not even hurt myself at all, but they had to take a least 3 Xrays to make sure I didn’t break anything for liability purposes. So, that will add to my astronomical bill. It looks like 2013 is starting out the way 2012 was, complete with my son in dire straits. Then I finally saw the PA and she told me that the EMG shows only an old chronic injury in L5 and S1, which I don’t believe. My question was why did this not bother me before my surgery; why now. I know it is due to something going wrong but I cannot prove it. I know either that or they just did not correct the source of my problems. Either way, I am suffering and almost cannot bare it. They have dismissed me from their care and referred me to pain management (a doctor in their practice) so we’ll see. I know, in my heart of hearts, that something was missed. But, good luck in proving it and good luck in getting another neurosurgeon or doctor to figure out what the hell is wrong with me. I have pretty much lost hope at this point and that is a dangerous place to be. In the meantime, the doctor has only approved (this is too unbelievable for me) a big whopping 4 more days of disability, until January 11th. Isn’t that generous of them—you would think that they are paying the money out of their paychecks (which are quite adequate so you’d think they would show some compassion). So, this never- ending saga continues into the new year with no end in sight.
January 3, 2013
I am now going to the Y and it feels like home again. The first 2 days I did workouts on the Arc Trainer and other machines. It felt good at the time, but afterwards, my symptoms seemed way worse—almost unbearable. I went back the next day and did the same type of exercises, and this time later in the day, it was terrible. I don’t know if there is a correlation between the two. I had the file sent (if they at least sent it yet) to the new surgeon that Michael recommended. I have to investigate all avenues at this point. I have now started aquatics therapy in the new Y pool specifically for the handicapped. Who would’ve thought that this would happen to me; just like who would think that they would become a quadriplegic—you just never know what life will present to you. I am totally exhausted now and actually having a hard time walking again. I hope this is just because of the strenuous nature of the pool therapy. I really enjoyed it and want to continue tomorrow.
January 4, 2013
It seems that no matter what physical exertion I do—either “strenuous” or just cleaning, I feel worse nerve pain. I don’t know which is worse, the intense pressure on my abdomen and back or the burning and not being able to walk in my legs. If I could just get up in the morning and feel that there was at least SOME miniscule improvement from the day before I would have hope. But, it is exactly the same as the day before, no matter how much or how little I do. I can’t just stay in bed or on the couch all day because they want me to exercise (probably just a little) but it is 2 months since surgery and this is ridiculous. If I just sit around all day I will gain tons of weight and be super depressed. I don’t know what the answer is at this point. I was hoping since I took the Gapapentin last night I would feel less terrible. I say LESS terrible because I never, ever, feel really good anymore. “Less terrible” is my new reality; I can’t even hope at this point for “feeling great” or “feeling decent” or walking normally. I would settle for just having at least less pressure on my belly which is unbearable sometimes. I don’t know if anyone who hasn’t experienced this knows what it is like to feel like you have a lead corset pressing in on your belly every day. The pressure is so intense that I cry sometimes. It is so hard to live at this point. I am going to the pool today, but yesterday it seemed like I felt worse afterwards and at this point I am at my wit’s end; I just don’t have any answers anymore. My current doctors seem to have just given up on me. I guess when the surgical result is not what they want they just throw in the towel. In this modern day of miracles, I cannot believe that there are no answers. There has got to be something else wrong with me that they are missing, and I just KNOW this! I just need help from above. I pray each day for a miracle or at least a little bit of progress—maybe today is that day! HOPE, that is what I need, HOPE—hope is everything, after all!
Monday – December 31, 2012
Happy New year. I called the NS’s office and of course spoke with the nurse who told me that the EMG findings are nothing that would cause these symptoms. Apparently they indicate an old radiculopathy and nothing new. I was shocked that she did not even say she would speak to the NS to see what else could be done. I asked if she ever saw anything like that before and she said NO. So I said that basically they are dismissing me and she said she was sorry but they don’t know what else to do. I was at a meeting when I heard this and I left in a state of shock and sat in my car. I called a friend who has had problems too for the recommendation of her recent NS who she had success with. She gave me the name and I called. They cannot see me—if they even will see me—until the end of January. Apparently they need the records and also because my surgery is still so new they probably won’t even consider it. That is my guess and that leaves me nowhere. I am not even going to say what went through my head after that and I was in a fog. Ruth came over to the car to talk and we ended up going for coffee at Starbucks, which was a little relief. I then called my NS’s office and found out the procedure for sending medical records over to another doctor. It is done by snail mail and takes at least about 2 weeks. In the meantime, I must wait. The nurse at my current office said she will probably send me to see the occupational therapist to see my readiness for work, which is a joke. I am lost and I feel like I have run out of hope.
EMG – Saturday – December 29th – I went for the EMG yesterday and it showed some abnormality in the L5 and S1 levels of the spine. He said that this may account for the peculiar symptoms that I have in my legs. Monday I am calling and requesting that they send me for a CT scan before my appointment on Jan 7th. If I need to have additional surgery, I don’t want then diddling around for a few more weeks before they get me in. I want to have it and begin the process of healing again. I saw Michael who has had lots of experience with botched back surgery and she suggested her doctor. But, who knows if I will get to see him. I will try the current doctors and if they keep waiting and waiting to see me, then I will try someone else. I cannot and will not live a half life, especially if there is a way to be fixed. These doctors have no compassion and they have no idea how horrific it is to wake up each day with absolutely no change and to be told to “be patient” when you know that something is totally wrong and you keep getting the run-around over and over. Of course I am not progressing; they didn’t totally address the problem!!! I will demand that they get the next test in ASAP and if they are uncooperative, I will see another doctor; simple as that!