It has been a hectic past few months. H E C T I C .
I was transitioned from the Healthy Indiana Plan (HIP) version of Medicaid to Traditional Medicaid, and the change created some chaos with the coverage of one of my important medications, Growth Hormone. I am GH deficient (among other things), so I have to take an injection once a day to replace that missing hormone, or my body won’t function like it should and my quality of life will decline noticeably. Muscle wasting, decreased immune system health, insomnia, and increased fatigue are the most notable acute symptoms to accompany Adult Growth Hormone Deficiency (AGHD). In the long-term, the biggest risk of AGHD is congestive heart failure. among other things. I encourage you to research this further yourself if you are curious. I’m trying not to overload this article, since I have a feeling it’s going to be a doozy already.
Anyway, when I was switched from HIP to Traditional Medicaid, they decided they didn’t want to cover the brand of GH I have been taking for the last four years. You can read all about the whole ordeal in this letter I wrote to my state representative about it (still no response from that yet, but It has only been a couple weeks). Long story short, due to incompetence and bureaucratic stalling in the Medicaid office, I was unable to access my GH medication for about a month. I experienced withdrawal-like symptoms and felt absolutely miserable just a few days after I started missing doses. I fought like hell to get my medication, but it still look a long time to resolve.
I am happy to say I am back on the shots now and have been for the last two weeks. Aside from fighting a rather nasty acute upper respiratory illness this week, I have been feeling a whole lot better. My energy levels have started to increase, but my body is still feeling weak. I’m going to have to do some strength building exercise to get my muscles stronger again. I got some dumbbells and resistance bands to hopefully help with that. I’ve also been invited to join some very nice folks to play a low-impact sport called “Pickleball“, which I think will be great exercise!
My sleep has been weird as hell lately, too. Insomnia isn’t just a username, it’s my life right now. For reference, I’ve gotten a little less than 9 hours of sleep total in the last 48 hours, and not for lack of trying. After I’ve been back on the shots for a while, that should start to level itself out a bit.
All that annoying stuff aside,
life has been pretty good regardless! I unfortunately lost control of the sense of flow and structure I had started to gain before I lost access to my GH shots and became too weak and tired to do anything but rest. Because of my weakness, I was unable to tend to my garden, so it is dead and overgrown with weeds now, and I had to put away my mandolin until I get the strength back in my arms. I hope that when I pick it up again, I’ll still remember some of the chords I had learned. I’ve also not been able to do much art-wise either.
I did not lose touch with my sense of gratitude, though. Sure, I had low moments while I was bedridden, but I think I have really managed to kick my guilt to the curb. I have been mindfully practicing being unashamed of my disability, and I think it has worked. I no longer feel as though I owe anyone an apology for my limits. Being able to overcome that sense of shame has created a monumental and positive shift in my mental health and sense of self worth. I highly recommend taking on this practice yourself.
Even though I’m still recovering from my period of low GH levels, I have started to get back to doing a little volunteer work here and there. I can’t do much, and I have to be careful to pace myself so that I don’t cause my health to suffer, but I’m getting involved in a few little things here and there around my community. Nothing too big, just a meeting here and there to voice my opinion and share my perspective as a disabled person in committees that affect change in my local government, and a fun project I’ve decided to spearhead for our local esports arena. I’m in the process of working together with them and the local TV3 station to potentially air their esports tournaments on the TV! I don’t want to make any definitive announcements regarding this just yet, but this is looking really hopeful! Since I have experience running the broadcasting software from my own streaming hobby on Twitch, I’m able to do some of the legwork and help them make this happen.
Speaking of streaming~
Not meaning to beg or anything, just letting you guys know September is “Subtember” on Twitch, so all subscriptions are half off! If you ever wanted to subscribe to my channel, now is the time! All my subs get a high res cartoon or chibi drawing of themselves (or whatever you want really, within reason) and are added to my “thank you” poster! ❤️ First month sub gets line art, next month gets color, next month gets cell shading, and any continued subs after that can request additional add-ons to their drawing. Subscriptions are only $2.49 currently, so that’s a steal, especially considering you get some art for it!
Here is my channel. Just click that “subscribe” button at the top right above the video player! I am getting super close to my minimum payout earnings. If I can get to $100 before October, I can cash out and get a nice bonus in time for Christmas! I have $90.78 earned so far, but I can;t cash out until I reach $100. Super big thanks to all my supporters that have gotten me to this point! I never really expected to get this far as a Twitch affiliate. I’m so grateful!
Volunteer work and streaming aside, I’ve been working on a new painting this week, and my creative muse has inspired me to get back to writing as well! I’ve gotten a head start on the book I want to write this November for NaNoWriMo! I’ll post more pictures and stuff when the painting is complete, but here are some work in progress shots:
It’s going to look a little different when it’s done, but here’s a little sketch superimposed on the painting to show the concept for this piece:
Speaking of paintings~
Remember that painting I did, “Chronic“? I just entered it in an art contest specifically for artists who have rare conditions! If you want to check out the contest and maybe even vote for my entry, here is the link! You can vote once every 10 days, once per category. Please check out the other awesome submissions as well! ❤ There is so much inspiring talent being shred there, I love it! ❤
Those are all the life updates I have for you right now. I hope to be bale to get back into the habit of blogging more often. Now that I’m getting my health back on track, I should be able to do that.
Thanks so much for all your support. You have no idea how much it means to me when someone follows my blog, likes my posts, and comments to let me know they are experiencing a lot of the same thoughts and feelings I have had during my endeavor accepting and living with my invisible disabilities. Seriously. Than you.