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)
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fibromyalgia
Fears of Becoming Home-Bound
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 😦
Migraines Caused by Neck Issues?
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.
Hemp Seed Oil Side Effects? Medical Marijuana Scam?
I didn’t post the last couple days because I’ve been sick. At first I thought I was having an adverse reaction to hemp seed oil, which I decided to try for the first time Friday. I was hoping it would help my chronic pain issues, but within a few hours of taking it, I developed a horrible headache (almost migraine level) and then became really nauseated and felt like throwing up all night.
However, yesterday I made sure not to take the oil again and I still had a rough day with nausea and other stomach issues, so I’m not sure if an adverse reaction could last that long or if maybe I just had a stomach bug or something. I hope it wasn’t the hemp seed oil, because if that makes me sick, I would worry that medical marijuana might do the same, which I am still hoping to try if I can get my Ohio prescription card.
The really sucky thing about Ohio’s medical marijuana program is that they only approve certain doctors to prescribe it and it sounds like you have to go through certain organizations to get approved….organizations that do NOT take any kind of insurance and charge a couple hundred bucks just for your first visit. Almost seems like a scam in some ways. I’m doubting you can use insurance on the prescriptions themselves with a system like that, but I’m not sure. So honestly, I don’t know if I can afford medical marijuana 😦
As for my possible adverse reaction, I think it worries me even more because my mom always told me that she could never smoke weed because it gave her migraines and made her physically ill. I was hoping I didn’t inherit whatever it is that caused that reaction in her, but now I’m worried maybe I did. It would suck to spend all that money on a medical marijuana card and then find out it made me feel worse.
I Froze My Butt Off at a Christmas Theme Park!
I’m feeling rough tonight, maybe because last night I went to a little Christmas-themed park and got really cold, which often tends to aggravate my CFS, Fibromyalgia, and Ehlers Danlos joint issues. I had a great time though and wanted to share a few fun pics of the night.
Here is me getting cozy with the Gingerbread Man:
Who doesn’t love a big fire pit when it’s cold out?
Here is some crazy guy climbing the giant Christmas tree (I’m guessing he wasn’t supposed to be doing that):
Is it just me, or are these trees a bit spooky?
Pretty lights on the water:
I’m a High-Strung Mess
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!
Poetry: Waiting for the Doctor
Waiting for the Doctor
By: Maranda Russell
Perch on the edge
kick the drawers down below
lay back
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
stand up
run the water in the sink
look through the cabinets
hear doorknob start to turn
hop back onto examination table
try to look innocent.
Another Fun Visit to the ER
I spent yesterday in the ER. Always lots of fun. I was rather freaked out because I literally couldn’t swallow at times and felt like I was going to choke to death or something. I also was having chest pains, trouble breathing, and feeling like I was going to pass out. Now I get to go back to the GI doctor because they think there are probably issues with damage to my esophagus.
Still not feeling much better today. They put me on some meds that are supposed to protect and hopefully help repair damage done to the esophagus, but no relief yet. I still struggle to swallow, keep coughing, and feel like there is something permanently stuck in my throat. Eating and drinking is no fun, even the smoothie I tried to drink earlier struggled to go down. My chest, especially around my breastbone feels like there is an elephant sitting on it. Man, this sucks.
Spiral of Anxiety and Fear
I am feeling so incredibly stressed about my upcoming SSDI hearing and everything related to it. It has become an obsessive thought pattern that I can’t get out of. This always happens when something I am super nervous or scared about is looming on the horizon. My mind is a circular track of “what ifs”, incessant thoughts about things I need to do, fears that I will make a mistake and blow my last chance for SSDI benefits, and fear that if I fail and am denied again, it will once again send me into a suicidal spiral of feeling worthless, disbelieved, and like I will forever be a burden to society and those I love.
Tomorrow I have to ask my psychologist to fill out a RFC (Residual Functional Capacity) form for the hearing. I think she will be open to it and want to help, but I am still anxious about asking and scared of rejection. I have to ask my primary care physician to fill out a similar form when I see her next week, and am even more nervous about that because I know she is often rushed and I don’t want to be an inconvenience or annoy anyone by making demands.
As you can see, I struggle greatly with asking anyone to do anything for me. I’m not sure if it is just my lousy self-esteem or what, but I always feel like anything I need is an imposition on someone else. Maybe the result of being raised by a narcissistic parent? Growing up, I often was made to feel like anything I needed (emotionally or physically) was selfish and inconvenient to those around me. To this day, I struggle with feeling like I am actually entitled to anything – even basic human respect.
I think my fear of being disbelieved about my disabilities also stems from the fact that when I first started getting really sick, even my own husband and family didn’t believe me. My husband came around first, when he saw how much I truly was suffering every day and how even the things I loved most were being ripped away from me. He has even apologized for his initial doubts. Some of my family (including in-laws) still make me feel invalidated, but I’ve come to the conclusion I can’t do much about that.
