My migraine, neck, and back issues have been flaring up on and off ever since my bad MRI experience almost two weeks ago. I feel like I’m not getting anything done and am struggling to get the bare minimum of my daily routine done. All this has me feeling depressed and has killed my enthusiasm for the new book I started writing.
The logical side of me knows the pain will eventually subside, but while I am stuck in this misery it feels infinite and everlasting. Chronic pain wears you down, destroys creativity, and can stomp all over your goals – at least anything short term. I hope I’ll be back to normal someday soon.
Here is what I wrote on my Facebook page today, I think it pretty much sums it all up:
Six long years, and I finally won my SSDI case! Fully favorable! Feel like crying and screaming. Been sick and in pain so long, sometimes I wanted to give up hope and die, but glad I hung in there.
All those people who doubted me or thought I was just being “lazy” or “dramatic” can kiss my ass. To all those who have showed love, empathy, and encouragement, thank you so much for helping to keep me alive and fighting.
My fellow bloggers here on WordPress definitely fall into the second category of supportive, encouraging people, so thank you all so much!!!
By the way, the decision was just made yesterday and my lawyer was the one who called and told me, so it will still be a little while before I get the back pay or monthly payments started, but I’m on my way!
Feeling like shit today. Woke up after sleeping 10-11 hours, ate breakfast, and then went to take a nap for another couple of hours. So, why am I so exhausted and feeling like I got run over by a steamroller?
Well, yesterday my husband was driving home from work when a tire fell off his car. I had to go pick him up and once I got there, we had to wait for the tow truck to come get the broken down car. It was supposed to be about an hour before the tow truck arrived, instead it was almost three hours. Three hours of sitting in the cold (we did turn on the heat in my car occasionally, but didn’t want to run it the entire time we were waiting). Three hours of sitting in a position that is not good for my back, neck, and joints. Three hours of my joints stiffening due to the cold and being cramped in the car.
I knew today I would feel rough after all that and expected my CFS/ME and Ehlers Danlos to flare up. As usual, I was correct, but I wish I wasn’t. Those who don’t have chronic illness and chronic pain have no idea how easy it is for normal, annoying life events to set us back for days. I think it is something you have to experience to truly understand.
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 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 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.
Last night I spent a horrible evening passing a kidney stone. I don’t know if you have ever experienced that particular level of hell, but it is miserable. I did finally pass it late last night and immediately felt the relief, even though I am still sore and uncomfortable from the whole process. This is at least my 3rd experience with kidney stones and I’m really wishing they would leave me alone.
On the plus side, at least it is over now, the swelling has gone down, I’m able to sit and lay normally again, and I’m lucky enough to be able to take the time to rest and recuperate.
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!
The past few days have been rough, due to my back going out again, so I haven’t been in the mood to write much, but I figured I would share a couple ACEO artworks I made this week.
The first is just an explosion of color and motion. It makes me think of fireworks, which seems appropriate since tomorrow is the 4th of July:
I also made a wedding themed sticker collage that I thought turned out pretty cool. I especially like the almost see-through effect created by laying the alcohol markers over the stickers:
If you like these artworks or want to see my others currently for sale, check out my Ebay store!