#cervicaldystonia

[katelynmallone]

In honor of “World Rare Disease Day.”

[spasmodicallyspeaking]

Medication

Sometimes I am all too aware of how much my life revolves around medication. Tonight, after not having a particular medication for the last three nights (it was the holidays and my psychiatrist was out of the office and therefore couldn’t renew my controlled substance) I finally have the medication I couldnt get.

I am so relieved, because I know that I’ll be getting the first good nights sleep without fucking strange ass dreams for three nights.

At this point, i pretty much know the withdrawal effects of most of my meds. Particularly with controlled substances, it’s virtually impossible to consistently medicate myself, considering the potential for error that occurs between me, my psychiatrist, my insurance and my pharmacy. For some of the meds it’s no big deal, for most it’s minor annoyances, for others it’s pretty freaking awful. If I kiss more than three days of Zoloft...forget it- I start getting brain zaps (they feel like electric shocks in my brain) and dizzy spells and disassociative episodes- no bueno. Luckily, I’ve got a decent backlog of extra Zoloft in case of emergency, and now know how to taper off myself if I really can’t figure out a way to refill in time.

Here’s the thing. I’m thankful for the restrictions on controlled substances- I’ve had addiction problems and the restrictions keep me in check and have made it a lot harder for me to relapse. I do my best not to get annoyed with the pharmacy folks who I know are doing their jobs attempting to curb a very serious problem in our country right now- I don’t envy them that position (nor do I really think it should be their responsibility to enforce those regulations, but that’s a much larger discussion).

But the truth is- I’ve had weeks of unnecessary side effects because of bureaucratic mistakes in the system beyond my control. Mistakes that have no direct impact on my insurance or psychiatrist or pharmacy aside from my many phone calls- but that have very real and debilitating effects on my life and well being. And that’s messed up. Sure I could and should be more on top of pre-planning and being aware of what needs refills when- but the reality of my situation is that there are a million and one of those tiny details that need attending to every day and ultimately, some of them fall through the cracks. And I end up with nights of 2 hours of restless sleep with existential dreams where I am sure I have ceased the exist and only now can be present in the world in the form of a sock. And if that’s not unsettling to wake up to after two hours...well, I don’t know what is...

[yashmedica]

Cervical Dystonia: Understanding Treatment Options & Market Trends (2024 Update)

Everything about Cervical Dystonia! Explore treatment options, latest market trends, advancements, and top companies shaping the future of cervical dystonia management

Cervical Dystonia: A Look at the Market and Treatment Options Cervical dystonia, also known as spasmodic torticollis, is a neurological movement disorder characterized by involuntary contractions of the neck muscles. These contractions cause the head to twist, tilt, or turn to one side, often causing significant pain and discomfort. While the exact cause of cervical dystonia remains unknown, it…

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[achieveintegrativehealth]

Dystonia is a movement disorder in which your muscles contract involuntarily, causing repetitive or twisting movements. The muscle spasms can range from mild to severe. They may be painful, and they can interfere with your performance of day-to-day tasks. . . . . . 💻 achieveintegrativehealth.com/ ☎️ [phone] iswealth

[dystonia-support]

[mafox10-blog]

This little girl always knows what side of my neck needs heat lol. She is the perfect personal heating pad for my #cervicaldystonia #spasmodictorticollis #torticollis she’s so sweet. I love her ❤️ #bambi #bambithegermanshorthairedpointer #germanshorthairedpointer #puppy #cute #disabled #disability #love #cute #spoonie https://www.instagram.com/p/Bo-uMQCFs0q/?utm_source=ig_tumblr_share&igshid=vcb4hs2iu9dy

[spasmodicallyspeaking]

today was a rough day

Today was a rough day. I got to work late and had to leave rehearsal early. I didn’t have a headache, I don’t think it was med side effects, but I felt some kind of wacked out exhausted. Foggy and blurry and dazed. 

Sometimes I wish I would cry about it because I feel like that’s an emotion people understand. As if that would make the excuse for me without having to explain how I went away this weekend which was really nice but I knew it wouldn’t be good because I didn’t take a day off to recover because I couldn’t take a day off to recover because I don’t have any more days off from work to spare. And now i go straight from work to rehearsal and even though I wake up on time I can’t actually physically get myself to work on time because my body just won’t go. 

It would just be a lot easier to cry and say I can’t anymore and leave.  But an adolescence of vehemently and persistently holding back tears has made it so that now they seem to evade me during the times when they seem the most appropriate. 

But I took a shower and brushed my teeth. Both of which I should have also done this morning but didn’t.  

I’m worried my roommate thinks I’m angry at her because I haven’t seen her because I disappear into my room as soon as I get home for air conditioning and sleep.

I’m worried my cast thinks I left because I feel sad or exposed about telling them about the Pain in the Neck party I’m planning when I go on disability. But I came into rehearsal feeling shitty. And I was excited about doing character work, but I couldn’t fully be there, and that wasn’t fair. I also couldn’t go another day without showering. At least without it starting to impact the people around me.

So today was a rough day. Tomorrow will probably also be hard, but after that I get a day off and get to go to Circle Pines. Which I hope, I hope my body won’t ruin for me.