On Thursday October 7th, me dear dear friend, Alexa Simmons, lost her battle with EDS and all that comes with it. She was only 22 years old. She had been in the hospital fighting off infections and contracted meningitis and shortly went septic. She was doing great earlier in the week and was upbeat and positive like she always is, even on Thursday afternoon she was doing well. Something happened that evening and she ended up going into cardiac arrest. Her body couldn’t take it anymore and she passed away late Thursday night.
Along with EDS, Alexa also suffered from Autonomic Dysfunction, Chiari Malformation, Seizures, and was having blood clotting problems. Her fight was a long and hard one.
Alexa was one of the strongest people I know. She never complained, no matter how bad things got. She was always upbeat and positive and had a smile on her face. She was there for me when I was starting my journey in finding a diagnosis for myself. She helped me through the roller coaster emotions that come when you finally get that diagnosis and understand what it entails. We laughed together, we cried together. I take solace in knowing that she is no longer suffering and no longer in pain. I will miss her greatly and she will be in heart always.
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.
That’s pretty much what I’ve been looking at for the last few days. I’ve been having this horrid pressure in my head for the past few days. It feels like someone is pressing down on my head and gets worse when I sit up and unbearable when I stand and attempt to walk. I have a feeling it’s a combination of skull and spinal compression due to the laxity of the ligaments and tendons holding the joints together. It’s also possible that it’s Chiari I Malformation (Arnold Chiari Malformation) where the tonsils of the cerebellum hang through the bottom of the skull and, in turn, cause pressure on the spinal cord. If it’s still like this by monday time to call the doctor. Question is, which doctor, which specialist?? I honestly have no idea. I’ll most likely end up calling the neurologist since he is the one doing all the MRIs.
With that said, I haven’t really been able to do much the last couple days. Lots of blog reading, web surfing, and Facebook! I’ve been knitting a bit, but not much to show. I’m still working on the cowl wrap using the bane of my existence Life’s an Expedition: Tunisian Lights yarn. This project is never ending. I am now reminded why I prefer lace patterns.
Two sets of MRI’s down, apparently another one has to be done. I should just make a bed in the neurology wing and sleep there for the next month. Needless to say I am pretty frustrated. According to the radiologist and neurologist, my scans are fine. According to people who understand EDS and the “friends” that go with it, I need a second opinion. I am in the opinion of the latter group. My scans are not “fine.” There is a clear retroflexed odontoid causing some compression on the brain stem. There is possibly a minor herniation of the cerebellar tonsils of about 4mm. Unless it’s a severe herniation, it can be difficult to detect on a standard mri, a standing mri is often needed.
I am not a dr, but I do have considerable knowledge of the brain.
I am so exhausted and fatigued ALL THE TIME. I have been fainting more lately and generally feel like crap. I just want to cry and be a 3 yr old about all this. It hurts to stand, it hurts to lie down.
My PT appointment went ok, my body is a lot worse than I thought it would be. I’m not supposed to be walking because my joints are too lose and subluxed; putting an extra weight on them will only make them worse. We are starting with very small core exercises and on Friday I am supposed to go in the therapy pool. My PT is looking into getting a new chair for me. I need one with a tilt function so that if I get dizzy or faint I can tilt back and rest a while. It will also take off a lot of pressure on my hips and spine.
The OT ordered some Oval-8 finger splints for me and made a wrist splint with a thumb spica for me. She’s going to make the other one when I see her next and as well as another set without the spica so that I can have some freedom with my hands to do more art work but still have the support.
I keep fading out… so I will end this for now. Updates will follow…
Doctors, doctors, and more doctors. This has been my life lately. Don’t get me wrong these have all, well mostly, beneficial. I’m starting to get down to the nitty gritty of things. I’m seeing an excellent neurologist who is sending me for some MRIs. He is screening for Chiari Malformation or any other cause for my symptoms. On top of dizziness, fatigue, palpitations, balance issues, etc. I’ve also developed some sort of movement disorder. It may just be muscle fatigue, but who knows. They other night my back spasms and it was so strong that my upper body jerked and I nearly hit my head on the wall behind me!
I’m also starting physical therapy, again, this time we are going to try aqua-therapy to see if that works. I sure hope so. I will also be getting evaluated for new braces and hopefully a new wheelchair.
That’s all I really have to update right now. I have been feeling pretty awful physically, which is affecting me mentally…. le sigh.