It’s been a minute since I just did a life update, so let’s take a minute to do so! I’ll break it up into categories for ease:
Physical health – Thank God, the Topamax increase seems to have helped the migraines quite a bit. They aren’t gone entirely, but have been much better lately. Still having some digestive issues, so I’m seeing the GI doctor soon. We suspect Gastroparesis or some other motility disorder might be at play. I’ve already been following a gastroparesis diet and it has been helping my symptoms, but we won’t know till I get a test obviously. That condition is really common with Ehlers Danlos though.
Mental health – Uh, all over the place. Anxiety like crazy. Kinda hyper. Hard to concentrate and focus…that one has been a real pain lately. Even getting stuff like this done isn’t easy. My brain wants to go in fifty million directions, none of them what they are supposed to be doing. Depression too, but kind of medium level. Like just the blahs. Apathetic. Need constant positive stimuli to not start feeling blah again, but that isn’t reality, is it?
My writing – Finally, some good news!!! First off, I was contacted by a music professor at Central Washington University in Washington state who wants to use one of my poems to set to music for a project she and her colleagues and a few students are working on. They will compose music for the poem (for instrument and voice) and then put together a concert music video for it (because covid and all I assume) and it will be released in April. Of course, I will be credited for my part in the project, and will share the video when I can.
Also, I just got an email today that the educational resources website Twinkl has chosen my blog to be one of their Top Autism Blogs of 2020! They get pretty high traffic on their site, so it is quite an honor and I’m psyched about it!
I’ve been having a tough time lately mentally and physically. These constant migraines and stomach/digestive issues have really got me down. Sometimes I feel like life isn’t even worth it if every day is going to be like this. If you’ve ever had chronic, unrelenting migraines day after day, you probably understand how I feel.
I am trying hard to get this fixed or at least lessened and my doctors are trying different things, but nothing has come close to solving the issue yet. I feel like I’m just being dragged through each day and the only time I feel good is when I’m asleep.
This is my favorite time of year and I normally love to go out and do Halloween-ish or fall-ish things, so not being able to do so compounds my sadness. This weekend my husband has plans to take me several hours away for my birthday to see the Jack-o-lantern spectacular in Louisville, Kentucky. I want to go so bad and will try to go if at all possible, but I fear I won’t be able to if the health issues are acting up bad.
Luckily, the event is a drive-thru event, so I wouldn’t have to do much physically, but if I have a migraine or stomach issues, driving that far obviously wouldn’t be fun and would kind of spoil the weekend. Keep your fingers crossed for me!
Ironically enough, someone commented on my last post about how maybe some of the drugs I’m on are part of the problem with my digestive issues recently. They were right about part of it at least. Turns out the stomach pain and nausea (and possibly some of the constipation) were caused by all the NSAIDS they had been giving me for the migraines lately. The toradol shots, the ibuprofen and naproxen I was told were safer than the other pain relievers when it comes to rebound headaches, etc.
So, now it seems I’ve developed ulcers and gastritis. Yikes. No more NSAIDS for me, at least for right now. They also found a hiatal hernia, but didn’t know if that was actively causing any problems at this point as it didn’t look very big yet.
So, now I’m just chilling out at home, eating bland foods, watching horror movies on tv, reading on my new Kindle Fire, and letting my body heal.
Just 17 days after my last ER visit for the same reason, I had to pay another visit this past Sunday because I had yet another migraine lasting 3 days or longer. This is getting to be a habit and that is really not a good thing. Some of these migraines are lasting longer than 72 hours which puts them into a dangerous category that less than 1% of migraine sufferers have called status migrainosus. Reportedly this is one of the 4 ways that migraines can actually kill.
Needless to say, this is not reassuring. I am meeting with my doctor to reevaluate my meds and hopefully that will help, but who knows. I’m afraid to get my hopes up at this point. If I’m not as active on WP, please don’t think it is because I am ignoring you all, I am just not up for much right now.
Three days straight of migraines that won’t go away. They’ll ease up a bit when I take migraine medicine, but then they come back. Sadly, my migraine medicine (Sumatriptan) is one that you aren’t supposed to take more than 4 pills a week, so I don’t know what I’m going to do if they keep coming back. Please keep me in your thoughts and prayers. If I’m not very active on WP, you’ll understand why.
First off, I got my covid results back yesterday. No coronavirus detected! That was certainly a big relief! Now I don’t have to worry about staying quarantined for weeks!
On the sucky side of things, I did have a full-blown migraine last night. I’m not sure if it was caused by my anxiety about the test results the past few days, or something else, but it was miserable. When I get migraines like that my neck kills me too (you can actually feel the tension and swelling in the back of the neck). Like most migraine sufferers, I can’t stand sound or light, and I get nauseated and dizzy as well. I went to bed early and slept about 9-10 hours, but still feel the aftereffects of it today and fear it coming back in full force.
I’m also a little sad because while I was unsure of my covid status, some friends of mine got together for the first time in forever, and of course didn’t invite me (I don’t blame them, they knew about the covid possibility), but it still bummed me out that I missed the chance to see them.
My cat will die tomorrow. After 14+ years together.
A meetup group that I was truly enjoying and was beginning to feel part of disbanded for the foreseeable future.
I feel artistically lonely. I wish I had others in my “real” life who had the passion for art and literature (especially poetry) that I have.
There is a good chance I am going through early menopause and that is triggering my major increase in migraines and making my hormone levels go crazy, affecting my mood as well. The doctor says this could go on for years 😦
I have been fighting off migraines the last few days.
I wish I had someone to watch movies and tv shows with that really got into them like I do. My husband is just not a movie/tv guy.
There will always be a huge hole in my life where my family should be, as all of my immediate family members are dead other than my mother, who I have a shaky relationship with.
Climate change catastrophe and human ignorance. The realization that if scientists are right about climate change, we are likely causing our own extinction, as well as the extinction of much of life on earth. It is pretty much too late now and we humans are not willing to make the changes needed to save ourselves and the world even if there was time. In the end, industrialization may have been the absolute worst thing that could have happened to the world. I guess we can hope the scientists are wrong, but it isn’t looking good from what I see.
Been feeling stressed. I don’t know if it is because I am autistic or just part of my personality, but even the smallest changes to my routine tend to throw me off and cause a lot of anxiety…and the holidays seem to be filled with those kinds of routine manglers.
For instance, tonight I have a friend’s Yule party to go to and tomorrow I am supposed to meet my mom for an early Christmas dinner/present exchange. Part of me is looking forward to these events and even wants to go, but part of me is stressed out and just wants to go back to bed and hide under the covers until the weekend is over.
All the anxiety takes a physical toll too. It turns my tummy into a wreck and brings on headaches that can easily slip into migraines if I’m not careful. The anxiety last night about the events this weekend was so bad that it did give me a migraine, so I had to take my migraine prescription. Hoping that won’t happen again.
I often tend to think depression is worse than anxiety because its symptoms are more obvious and immediate, but I think I underestimate the compounding ability of high anxiety.