I have been having some problems regarding my spine and went to see the Spine Specialist on Thurs. He reviewed my xrays and from that he found osteoarthritis of the neck, bone spurs, and thinning of the vertebra. He also noticed that my facet joints (the joints that stop the spine from rotating too much), are very wide and loose, which means my spine is, in fact, rotating to much and is probably what is causing all the pain. From the over rotation the ligaments between and around the facet joints are inflamed. Unfortunately, there’s nothing that can be done about it aside from nerve blocks, which only last about 12-24 hours for EDS patients, or nerve ablations. If I did opt for nerve ablations I would absolutely have to wear full neck-to-pelvis bracing at all times. As of right now, I could still take it off when resting. My next step is getting to an orthotist, or brace person, to be fitted for new braces.
Ok, so what does this mean? Well, the osteoporosis is getting worse. My bones are very thin and are shaped like bow-ties instead of rectangles, at least in my neck. I am going for a bone density scan some time in the next few weeks, and depending on the outcome I may be starting on Fosamax or Boniva, or something similar. The really sad part about this is there is no way I would be able to carry or deliver a baby with the state of my bones. I am heart broken over this. I have always wanted to be a mother.
The arthritis and bone spurs will continue to get worse and may impinge on the spinal cord, when and if this happens I will most likely have to have surgery to scrape away the spurs.
As far as the facet joints… I don’t know. From what I’ve been told there is nothing that can be done about it, and it will continue to get worse. I will become more and more dependent on the braces and my wheelchair.
Hearing all of this was like a slap in the face. I knew there would be some problems, but I thought I would have more time before it got this bad. Basically, I have the spine of a 65 year old woman.
Tonight has been a really rough night on me. Not because I went out and paying for it, no, it’s been an emotionally draining night. The loneliness of have having a chronic illness and not being able to talk about the scary parts is really isolating. Yes, I have family, a wonderful boyfriend, and good friends. I can’t tell them everything, though, about this illness and about what scares me and what I could be headed for in the future. It would break their hearts. It breaks my heart that my family (including N and friend’s I consider family) has to deal with it alongside their own stress and worries. They watched go from a very healthy, active, young woman to someone needing pretty much constant care and dependent on everyone around me. They watch me walk like an 80 year old woman with Parkinsons Disease. They watch me get dizzy and lightheaded and sometimes even faint. They watch me be in pain all the time and there’s nothing they can do about it. My family has gone through so much sickness, so much pain, that we all start to wonder what it is that we did wrong. What are we paying for? My grandfather, a devout Catholic, has become angry because he prays and he prays and all he hears is bad news. It breaks my heart. So, I don’t tell them everything.
My friends have their own lives to deal with, and their own troubles and things to deal with. They don’t want to hear about my illness, whether they say it or not. I know they don’t, I wouldn’t want to hear that my friend is dealing with so much pain… At least, that’s what I hope the reason is. Having a serious chronic illness that takes so much out of the person makes it hard to maintain friendships. I don’t go out much anymore because I’m always exhausted, too exhausted even to shower a lot of time. When I do go out with friends, I always have to cut the evening short because I feel weak, have a headache, etc., which also cuts short my boyfriend’s night as well. Most of the time, I can’t go out at all. I feel like I’ve lost a lot close friends because I simply don’t have the energy to do things. Not being able to drive doesn’t help either.
The worst, though, is when it’s late and I’m alone and I think about what’s going on. How I have no control over what is happening to my body. How, the fact is at this point, I’m not going to get any better. This is as good as it gets, and it will get worse. Maybe a few months from now, a week from now, or a few years from now. The fact of the matter is that it’s going to get worse. Currently, I’m having problems with my spine. It’s twisted and it only takes one wrong movement and it could paralyze me. That scares me to death.
I can picture it.
The different sections of my spine, my ribs, pelvis, etc. all sitting around a table arguing. Why? Because they hate each other.
At least that’s what I think is going on.
My cervical spine seems to be pretty set on separating itself from both my skull and my thoracic spine. The thoracic spine desperately wants to be independent of my ribs and causing all sorts of raucous about it. My lumbar spine hears all this noise and arguing going on upstairs and wants out. Just plain out from all of it. Then we have the pelvis which is just about reading to implode on itself.
All I want is for everyone to shut up and just play nice with each other.
Is that too much to ask? Is it??
This whole dysfunctional spinal family scenario was inspired by a thread of fellow EDSers experiencing this very same phenomenon in which they aptly described as “Divorce.”
They were right in the whole idea. What goes on in my body feels like a giant family reunion gone very, neurotically, physically, violently wrong. What I don’t get is, why is it so hard to find a decent person who understands roughly what goes on with EDS to make an appointment? I’ve been given handfuls of names and numbers. I’ve called them all. Some say that I have to actually have some sort of surgical diagnosis to see a spine specialist or I have to wait until March. MARCH????? Really? I understand that there is a shortage of doctors. I understand that they are in high demand. What I don’t understand is what do we do while we are waiting five or so months to see someone to tell us something we already know, then send us off to someone else?
I am so very tired. I am considering getting my own patient advocate or caseworker.