I’m still struggling with bad neck pain. Yesterday it felt a little bit better, so I figured I would try to get out of the house for the first time in a while (other than ER visits). Unfortunately, once I got in the car, the vibrations from the car itself and the movement from driving kicked the pain back into high gear. I did at least make it to Wendy’s so my husband and I could get some dinner, but then it was straight back home because I was in too much pain to do anything else.
Honestly, after two weeks of these headaches and severe neck pain, I’m starting to worry this might be a long-term problem, just like my right shoulder blade and the arches of my feet. I’ve been incredibly depressed the last few days, partly because of the pain itself, partly because I can’t do much of anything, and lastly because I worry if my body continues to deteriorate at the rate it seems to be going, I may eventually become completely home-bound. I believe that all these chronic pain issues are mostly related to my Ehlers Danlos Syndrome, which sucks even more because there is no cure for connective tissue disorders 😦
I’m still struggling with migraines, but am starting to think that they might actually be cervicogenic headaches (caused by issues in the neck). The last few days, the left side of my neck has been visibly swollen and extremely tight, causing a great deal of pain. I can’t help but notice that the worse the neck pain is, the worse the headaches, nausea, dizziness, and fatigue become as well.
One person on Facebook who also suffers from Ehlers Danlos even suggested that perhaps the migraines may be due to a chiari malformation or craniocervical instability, which are both common issues associated with Ehlers Danlos Syndrome. I have wondered about the neck instability possibility, as I often feel like my head is excessively heavy, not supported well by my neck, and sometimes bobbles around almost like a bobblehead. Whenever I sit for long, I have to have a neck rest because my pain worsens quickly if I have to hold my head up without support.
Unfortunately, it looks like if instability is the issue, the answer might be this huge, horribly-uncomfortable-looking neck brace that looks like it would be sensory hell for me. Of course, I do know from a prior MRI that I also have degenerative disc disease throughout my cervical and thoracic spine, and at least a couple herniated cervical discs. Whatever the issue, I wish it would clear up soon! This is miserable and I feel like I am living on NSAIDS, muscle relaxers, and Lidocaine right now.
I wish you could see
the spectre of depression
haunting my days…
dragging his knuckles
through the miry muck
and leaving a trail
of icy numbness behind.
(Poetry by Maranda Russell, marandarussell.com)
You ever go to a doctor’s appointment and feel like you somehow disappointed them? That’s how I’m feeling today. I went to see my psychiatrist and while he didn’t say anything overly negative or mean, I just left with the feeling that somehow he was a little disappointed in me.
Perhaps I am projecting here, but I kind of feel like he isn’t quite as supportive as my other doctors about my going on SSDI. Not because he doesn’t think I have real problems and medical conditions, but because he seems to think I have a lot of potential and maybe he thinks if I get disability I’m just going to sit around and do nothing the rest of my life.
This may be partly my fault if he has that impression. After all, I don’t normally talk about all the stuff I do enjoy doing while there. I only see him every couple months for a short visit, so I tend to focus on what is going wrong, not what is going right. I don’t talk about all the art I make and sell or the books I write and sell. I don’t talk about my blogging. I don’t talk about all the people I correspond with on social media. I didn’t mention that I was recently made a board member on the International Board of Sensory Accessibility. I didn’t tell him about the art contest I submitted three artworks to this month. I don’t tell him about the online communities for chronic illness, chronic pain, autism, and other conditions that have given me a chance to support others and receive support myself.
I kind of wish I had mentioned some of those things now. Maybe next time.
Well, my one-day migraine from Wednesday turned into a four-day migraine that I finally had to go to the emergency room to get rid of this morning. They pumped me full of a bunch of drugs that did take the worst of it away, although I must admit I’m scared it will come back once those wear off. They did give me a steroid shot to help stop rebound migraines, so hopefully that will work.
I’m exhausted and somewhat depressed about the whole situation. I went at least a couple years with barely any migraines and then this just pops up out of nowhere. I can’t help but think part of it might be all the stress about my upcoming SSDI hearing. I try not to consciously think about it, but that doesn’t work so well for obsessive minds like mine.
I’m sure you guys understand that this will be a short post since I’m not feeling too great, but here is a picture of an extremely ugly, grumpy stuffed lion for you to enjoy:
This has undoubtedly been a rough week for me so far, but some good things have happened too. Here is a short run-down of the last few days:
Sunday and Monday, one of our pipes froze because of the freakishly cold weather so we had no water until that section thawed out. Luckily, it didn’t cause the pipes to burst or anything like that. My husband thinks he solved the issue by replacing the insulation around the pipe, but I guess we’ll find out the next time we all freeze.
Yesterday I had my appointment with the rheumatologist to get my Ehlers Danlos testing done. I’m officially a zebra! Right now my diagnosis is Hypermobile Ehlers Danlos, although I do plan to try to pursue genetic testing to make sure none of the other EDS genes are playing a part. The doctor also highly suspected I have POTS (postural orthostatic tachycardia syndrome), which would help explain my dizzy spells, vertigo, feeling faint, and maybe even a few episodes of passing out when I was younger. It sucks that there is no cure or really even further treatment other than what I’m already doing, but it is wonderful to have some answers that finally make sense!
Tuesday I made the mistake of posting in a Facebook chronic illness group about my surprise that a zoo we want to visit charges $25 for the use of a wheelchair for a couple hours. Soon I was accused of being entitled, expecting everyone else to pay for my disability, and even being too poor to go to the zoo if I couldn’t afford the extra charge. The attacks got to the point that it actually made me cry because it hurt my feelings so much. I wasn’t even saying that the zoo had no right to charge for use of their equipment, I was just questioning whether the price was a bit high for the time it would be used. Of course, then I heard that some zoos and theme parks charge way more, some even over $100 a day! I can’t help but feel personally that is taking advantage of the disabled. Maybe I’m wrong, but I still feel that way.
Last night all this stress took its toll on me. I had the worse migraine I have had in years. Luckily, I still had some migraine pills from the last time I filled the prescription which was several years ago. They were technically expired, but still did their job. Today I have that slight headachy, hung over feeling I always get after a severe migraine.
I’m still struggling quite a bit. Feeling lethargic, numb, and exhausted all the time. Still not wanting to get out of bed, even though I’m not finding much refuge in sleep either, since my dreams the last couple nights have been overrun by nightmares. Quite an assortment of bad dreams too: A dream about my husband not loving me anymore, a dream about giant ants, a dream about trying to get kicked out of high school. Even in my dreams I’m miserable. During the high school dream the reason I wanted to get kicked out was because I was so depressed I just couldn’t function and wanted to go home and crash.
I’m hoping this depressive episode passes soon. I’m not sure if it is maybe exacerbated by seasonal affective disorder since I haven’t seen the sun in a while, or if this is just a shitty coincidence, but I wish I felt better.
I’m going through a depression slump right now. I can tell because I am sleeping half the day away and not wanting to get out of bed even when I do finally wake up. I don’t feel like writing, creating art, talking to anyone, or simply functioning. I want to stay in bed and either sleep my life away or curl up under all my heavy blankets and leave reality behind.
I have some important appointments coming up soon (my Ehlers Danlos testing and my SSDI hearing top the list), but right now I don’t even care about those things. I don’t feel like doing them and the thought of dealing with them is overwhelming. I hope this slump passes soon.
I’ve had a rough few days. I think the main problem is that I’ve been out of my anxiety meds for a while because Buspirone is on national back-order for some reason, and my pharmacy doesn’t know when/if they will get it back in. I contacted my psychiatrist today to ask him to prescribe something else, hopefully he will do so soon. I was going to try to just hang on until my appointment with him at the end of the month, but I am having some real anxiety issues cropping up without my meds.
For one thing, I’ve been having some body dysmorphia issues, which happens now and then. I’ve heard that issues like these are common among high-functioning autistic people. I’m not trans or anything like that. I don’t want to be a man. But, for some reason, ever since I hit puberty, I’ve always felt kind of uncomfortable in my own body. I’m not sure why. I don’t think I’m extremely ugly or anything like that, but it is like there is some kind of disconnect in my brain when I look in the mirror. I feel like my body looks wrong somehow or like it isn’t the body I should have. It is hard to explain.
I think part of it has to do with always feeling unfeminine. Like I said, I don’t want to be a man, but I’ve always felt like I’m not very good at being a woman either lol. I feel like a tomboy, I always have, yet sometimes when I look in the mirror I look more like a woman than I feel. It is weird. I also have always wished I was thinner, more flat-chested, and athletic-looking overall, but my genes just don’t cooperate with me. It is funny to me when I hear women saying they want bigger boobs. I’m always like “why would anyone want that?”, but I know everyone has their own insecurities, and some people obviously have different ones than I do.