I am not sure if I am complaining or just letting out steam....
I am exhausted. Since October I have battling bouts of intense pain, swelling, sleeplessness, strange "sensations" and mounting problems. Starting this month, lasting through the end February I will be seeing them all. I mean every one of my specialists. Some of them were already planned out this way. Others, well 2, because we had to help out a family member financially on very short notice so those two were rescheduled for February. I am glad because if I wasn’t already seeing them all I would be making appointments to as we speak.
The sleeplessness has always been a problem, but it seems I have a few good four hour nights, then back to three. The same roller coaster is happening with the pain in my spine and hips caused by my spinal deformities. I am usually at about a 6 to 7 everyday. It is the best we can do under the circumstances. Believe me when I say I have very active doctors. They care for me a great deal and work together, as a team, to care for me mentally, emotionally, physically and financially. They try their hardest to take care of me. I do need have a number of "smaller issues" addressed, but nothing major I don't think. Nothing big. Well I cant see very well, but that is nothing new. I love my eye surgeon as he has taken care of my eyes since he implanted a synthetic lens. He takes care of all my eye surgeries since then. Some of thw warning signs he told me to watch out for have been happening for the last few months. Hearing well.. not much I can do but measure it. The Hypoparathyroidism isn't that big of a deal its controlling and treating the complications that is tricky. At some point my teeth are being taken out to send to the lab to be refitted. Nothing major. All of those problems that will be taken care of. I do have to speak to my GP about some problems that started over the summer. No big deal just an intense pushing sensation behind my eyes and headaches. He said we would check out with a number of other specialists to just to be sure and then I would get images of my brain. Nothing overly problematic. Just frustrating and time consuming. I already sought out the other doctors he wanted me to see, each one had something they wanted to "fix" for me, but none of it was in relation to the things I was seeing them for. No big deal, its time for those pictures of my head. Maybe now I can prove to my husband there is more than just air in there. So, a busy start to the new year, no doubt.
The first though, that I will be seeing, is the specialists that care for and monitor my spine. I am frightened to my very core. Back in October I started having a "pulling" sensation in between my shoulders. It came with immense pain but it had only happened once. It was happening in the exact same area that I had been experiencing intense "itching" for almost a year prior. It wasn’t anything to be alarmed at, at the time. We already knew I was forming another curve in that area and it was suspected that the "pain & sensations" was because I was progressing in the new curve. Meaning the rotation of my spine on the vertical axis was progressing (this is what happens in each curve). That particular curve was progressing. It wasn’t that big of a deal, we felt it could wait until it was time for new images of the length of my spine after the holidays. I have regular x-rays for cobb angle measurements of my curvatures (levoscoliosis, dextroscoliosis, compensatory secondary tilt). Sometimes, not as frequent, MRI updates. This is done regularly for the entire length of my spine to keep track of the progression of my deformities and and measurements of my cobb angles. ...but it happened again. The intense pain and "pulling". Only it lasted for 3 days before Thanksgiving. Then a week after that the same thing. Only lasting 4 days. Now, it is January and it has happened about 8 or 9 times. It is happening again as I sit here. It started again Thursday of last week. The times when this happens is coming closer and closer together. I am barley recovering by the time it starts all over again. It is hard, mostly because I already have an immense amount of pain from the other deformities and hips. Add in this new problem and goodness, I can barley hold a conversation. It is hard, even for me. I am very accustomed to pain, and still... it certainly exhausts me rapidly. But that isn't what has me frightened.
At this point, in the 4 short years (well, will be 4 years in February) since this all began, I have progressed very rapidly. I hear my case is rare. I am no longer surprised about my progression. What is scary though is a problem with my leg. Around the same time I was experiencing the "pulling & pain" in between my shoulders where my new curve is.. I also began experiencing "ice" sensations on my legs. Little silver dollar sized areas that felt like ice. I would touch them, and weren't cold. The ice didn’t hurt at all. When it first happened I did tell all of them about it. They all seemed concerned and took notes. At one point two of my doctors were discussing with each other about me seeing a neurologist of some sort. Due to the numbness, sensations and the "quivering" along my spine in the lumbar region when I stand. I just never thought much of any of it until two weeks ago. Two weeks ago I had a period of time where for about 3 days the "ice" sensation was back. The same areas. Only it lasted 3 days instead of just a few minutes. Then I sat down because I was tired (pulling and pain "flare" wears me out and I have to rest quite a bit) and while I was sitting on my stool my entire right leg went cold. "ice". Was very confused so I stood up. I could feel my leg just fine (I have had a "surface" area of my upper right thigh and upper left calf go numb off and on for over a year, this was not that sensation) It didn’t feel cold to the touch. Then I went to do something and the moment I put weight on my leg to walk to.. can't even remember what I had gotten up to do.. my leg "jerked" repeatedly, the whole thing, and I barley had time to grasp the door frame to the laundry room to slow the fall. Fell right over. Inside my leg felt like it needed to "stretch". I literally could not put any weight on the leg. I could feel it just fine. It wasn’t numb at all. about 5 or 6 minutes later it felt normal again and I was able to walk. I was shaken a bit but not hurt at all. I just thought "oh great. Last thing I need. Well, Ill have to remember to tell doctor". I went about my day fighting the pain and fatigue, no problem. Then through the rest of the week the whole "leg cold/ice" happened multiple times, no where near as strong, but enough to make my foot and ankle "unstable" for short peroids of time, if that makes sense. Spasm my foot in word. Make my foot curl to the inside. Then Thursday..... jeeze. Just what I didn’t need. I was cleaning the girls rooms. I was tuckered out (again this "ice" stuff is happening during the same times as the "pulling and pain"!) after cleaning my youngest room so I sat down on my oldest daughters bed to rest a moment. When I went to stand holy goodness it was happening again. Only stronger. Sickeningly. My right leg is doing it again. I thought "no problem" I will just make the bed first. So, I made the bed, careful not to put any weight until it passed. Only it wasn’t done by the time I was done making the bed. Well no problem I will just clean up her desk. I had been meaning to get on to her about her scrapbooking supplies being a mess. Only.. when I was done it was still going on. I tried to make it to her laundry basket and since my leg wasn’t working I had to grab a hold of the bed again as I went down. So, I just sat there on the floor until it passed. Organized her new doll house and petted the cat. It lasted about 20 mins or so all total, I think. Once I could finally get up I just did quick cleans of the rest of the house. Then I turned on the dishwasher to drown out the ringing in my ears so I could nap on the sofa. I was so very tired and spent.
I see my spine specialists this coming week. I am just plain frightened to tell them what has been happening. The "what ifs.." are tearing up my thoughts. All the questions that I cannot help but ask myself. How bad is my progression? Is the pain / "pulling" in between my shoulders and my leg not working due to the same problem? They happen at the same time together. Is that possible? What will happen? Is this leg problem going to continue? The logical part of my brain tells me it will do me no good to sit a fret over it all. Yet, there I am. Questions and questions racing through my mind over and over. Yikes! ..reguardless, my "images" will take a while to get done. My x-ray day takes hours. MRIs are nightmares. You would be suprised how long it takes to get images of your enitre spine and hips in all those different positions. Hopefully I will be able to reign in my racing thoughts and worries. At best it will take a few weeks to get all my images updated and some answers. I just gotta remind myself to relax.
Oh gosh, and thanks for listening to me go on and on.
TWO roads diverged in a yellow wood And sorry I could not travel both And be one traveler, long I stood Chronic Pain ModeratorMail