Yesterday I had my regular neurologist visit to follow up about my migraines and while there I was also diagnosed with Essential Tremor, a genetic condition that is often confused with Parkinson’s from the symptoms. It most commonly affects the hands, head, and voice, but can affect any body part. It can also affect balance, mood, and possibly memory.
My balance, hands and voice are already affected pretty bad at times which scares me since it can be a degenerative condition and it can eventually become hard to speak, eat, write, or in my case, make art, since I am an artist.
My tremors started out in both hands a few years ago and have definitely worsened. At first, I only noticed that I could never take a good picture because I couldn’t keep the camera steady enough to take one. It has worsened since then and affects more daily activities, such as writing, typing, pouring/drinking liquids, dropping almost everything, etc. I noticed the voice tremors starting probably a year or two after the hands.
My balance has noticeably worsened to the point that I often start to fall over while just walking around the house or even standing still. It isn’t unusual for my husband to push me back up as I start to fall over like the Leaning Tower of Pisa.
For a long time I tried to dismiss it because I didn’t want to think something might really be wrong. I tried to blame it on anxiety or weird medicine side effects. I am glad that I don’t have MS or Parkinson’s which I feared sometimes. What finally made me bring it up with the neurologist is that the geneticist I saw for my Ehlers Danlos testing a few months ago seemed concerned by how much my hands shook.
The last thing I want to do is take yet more prescription medicines, but I am considering it in hopes that it might slow down the progression and alleviate the symptoms a bit. The only bad thing is that all the meds they use to treat this condition can worsen my depression, so the neurologist wants me to get the ok from my psychiatrist before we decide on a med to try.
I’ve started livestreaming on my YouTube channel just for something to do and another way to connect with people. I’m doing most of the streams on my personal channel, rather than my toys and books channel. My personal channel has a lot less subs (around 200 compared to over 3,000), so if you are a YouTube watcher, please consider subbing to my channel! Here are a couple recent livestreams if you are interested:
The YouTube playback for the livestreams is a bit blurrier than normal vids, but I’m working on that! You probably want to watch them in the highest quality available to minimize blurriness.
Sometimes I worry about fluoride…specifically ingesting too much of it. Too much fluoride can cause a condition called skeletal fluorosis, which is often mistaken for arthritis or fibromyalgia. Most people know our toothpastes and other dental products often contain fluoride, but many don’t realize all the other sources of fluoride we ingest every day.
There is fluoridated water of course, which has been a point of contention for years. Should the government put fluoride in the drinking water? Is it necessary? Especially when most Americans use toothpaste with fluoride anyhow? Did you know that both green and black tea (two of my favorite drinks) are a high source of fluoride? It often has way more fluoride in it than the water, often over the “safe limits” established by the government (which are still debatable).
Because our water is fluoridated, almost everything made with water stands a chance of being fluoridated too – all our drinks, alcohol, soups, fruits, grains, vegetables…even our meat! (Often our food becomes contaminated with fluoride more due to pesticides rather than our water, and our meat gets contaminated because animals eat food with these pesticides in them.)
Some people claim antidepressants like Prozac can contribute to fluoride poisoning, although this is definitely debatable. I’ve heard scientists argue that because of the way the chemicals bind together in the drug that the fluoride should all get washed out, but who knows for sure?
Maybe I am just an anxious, sometimes paranoid person (all true), but maybe this really is a problem that is often ignored or overlooked. After all, fluoride is still a poison.
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 😦
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 am currently a high-strung mess. As my SSDI hearing looms nearer and nearer, I find myself obsessing way too much over it and almost panicking about the fact that I feel powerless over what will happen in the end. I am trying to do absolutely everything I can think of to prepare for it and make sure we have good medical documentation especially, but that in itself is stressing me out because it means having to be assertive and ask for things from my physicians which I despise having to do. I HATE having to ask ANYONE for ANYTHING. It is just the way I am, but sometimes you have to do the things you hate…
I do not do well when I feel like I am not in control of a situation. My anxiety can’t handle the uncertainty and the endless waiting. I would almost rather deal with the worst case scenario immediately rather than be in limbo for months waiting for someone else to decide my fate. On top of that, I feel like I am annoying those around me (lawyer office employees, doctors, my poor husband) because of my intense anxiety state. I talked to a paralegal today and she told me to take a deep breath and relax lol. If only I could! I can do the deep breath, but the relaxing part just ain’t kicking in.
The heightened stress is taking a physical toll too, as it always does. My upper back/shoulder/neck area is flaring again to the point that I am regularly rolling on Lidocaine and had to take some Tramadol. The pain is so bad I can’t do any household tasks, which makes me feel bad too. Even typing this is painful and requires frequent breaks.
Now I feel like my whining is probably annoying all of you too lol. Sorry if that is the case, but I just needed to vent!
Waiting for the Doctor
By: Maranda Russell
Perch on the edge
kick the drawers down below
wish I had a pillow
turn to the side
curl up in a ball
poke a hole
through the thick
tissue paper cover
read the poster
about acid reflux
for the 15th time
flip onto back again
count the ceiling tiles
12 in all
play with the blood pressure
thingy on the wall
run the water in the sink
look through the cabinets
hear doorknob start to turn
hop back onto examination table
try to look innocent.