I have to be careful how I word this post as there is a slight (but unlikely) chance the person I am talking about might read it. However, it has been weighing heavily on my mind so I wanted to talk about it.
There was a person in my personal life I was really close to for several years. I cared about them deeply and loved them like family. They were much younger than myself, so I tried to set a good example for them and be a sort of big sister to them. We spent much of our time together, partly out of necessity at the time and partly because I genuinely enjoyed their company.
Now they are all grown up and I am still in loose contact with them and seeing how they have turned out has kind of broken my heart. They have embraced some radical ideologies that are rude, ignorant, and sometimes bordering on mean or even cruel. I know I only had a real influence on them for a few years, but it still makes me feel like somehow I failed them that they have turned from such a thoughtful, sensitive, caring young person to a cold, bitter, angry, and sometimes hateful adult.
I still love them and know that goodness I knew inside of them must be there somewhere. I know they have had a rough life and many hurtful experiences, just as I had growing up. I wonder if I am being too hard on them. I know sometimes the other side goes way too far with political correctness, perhaps it is just a reactionary thing? Maybe they are just being young and foolish, like we all once were? I don’t know, but it still hurts my heart.
Today was a rather stressful day since I had an appointment with my lawyer for my SSDI hearing next week, so I didn’t have time to plan a full post, but I did want to participate again in the Twittering Tales picture prompt by Kat Myrman. As I explained last week, this writing challenge is to simply write a short story, or poem, or whatever you want as long as it is under 280 characters (the length of a tweet).
Here is this week’s picture prompt and my entry for this week below (photo from Pixabay):
My mother considered naming me Candy, but worried that if I turned out to be fat, it would be more ammunition for the bullies to use against me.
I didn’t turn out to be fat, but I did turn out to love candy – except for those little Valentine’s hearts.
All sugar, no substance.
I’m a paper doll
with third degree burns.
Dress me up,
make me pretty,
and please, simply ignore
all the raw, peeling flesh
falling onto the floor.
(Poetry by Maranda Russell, marandarussell.com)
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 feeling pretty down in the dumps as I am still struggling with migraines and neck pain, but thought I would share some cheerful art in an attempt to cheer myself up as well as anyone else who needs a lift. The following two ACEO (artist trading card) collages feature cute kitty puffy stickers that I received for Christmas stocking stuffers:
Visit my Ebay store to see all my art currently for sale!
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: