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!
Well, things are still a bit rough. My back is still not doing great although it has been a slight bit better. I have been able to cut back a little bit on the pain killers, which I am thankful for. I hate having to take opioids too often. Unfortunately, I did trip over my TENS unit cord and that didn’t do my back or my knees and legs a lot of good:
I was thankful the fall didn’t make my back way worse though as that easily could have happened.
Yesterday I even felt up to going down to a nearby thrift store and just walking around a little bit to see if I could loosen my back up any. I even found a new Eeyore to add to my collection while there (the pink and light blue one on the far right):
Well, my back is no better after 5 days, so I ended up visiting the ER last night. They gave me a steroid shot and 2 trigger point injections. It was the first time I’ve had trigger point injections and they hurt like hell! Luckily, the pain is brief, but I couldn’t help yelling out a bit in pain and squeezing my husband’s hand like a stress ball during the procedure.
Unfortunately, the shots didn’t seem to work. I’m not any better than I was before going to the ER. That makes me think that it is probably my spine causing the issue – either my degenerative disc disease or my bulging discs. At the ER doc’s suggestion, I also bought a TENS unit and have tried it out a couple times. I’m not sure it is helping either, but I figure at this point I’ll try anything.
I’m so very tired of this constant pain. This is enough to drive a person crazy.
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.
First off, I want to thank the person who made a supportive donation to my blog through Paypal today! I believe this is the second donation I’ve received that way and I really appreciate the support! If you are interested in ways to support me, please check out the Support My Blog page on this website.
Also, I got some good news today that I don’t have to do the second part of the MRI that went disastrously last week. That is such a relief. I was afraid if I did the rest of the MRI it would just trigger another migraine. The MRI results I did receive were pretty good, with no seeming worsening of my cervical issues! Thank goodness!
I did have to visit the GI doctor today and found out I need to have an endoscopy, which I am nervous about, but I realize it is important if they are to find out why I am having such horrible bouts of esophageal pain and difficulty swallowing. At least I will be sedated for the procedure and hopefully won’t feel or be aware of what they do. My appointment for that test isn’t until next month, so at least I get a little break from medical tests.
That headline is not an exaggeration. First off, my MRIs went bad. I had MRIs for my brain and neck scheduled last night, both with and without contrast. I didn’t even get to the contrast part because the first part gave me a migraine, triggered severe neck pain, and gave me a major panic attack. I was almost sobbing by the time they got ready to give me the contrast, so they sent me home.
I left feeling embarrassed for not being able to keep myself from crying in public yet again. I also felt feelings of failure as I couldn’t do something as simple as completing two MRIs. Now I have to contact the neurologist that ordered the tests and tell him I wasn’t able to make it through and see if he wants to make separate orders for the contrast part. So, I might have to go through it again soon.
Also, we ate at a local restaurant yesterday that served me some bloody chicken. I didn’t notice right away because the blood pooled beneath the chicken breast. Anyhow, last night I got really sick and had to sleep with a trashcan beside me. I took both Mylanta and Zofran and nothing helped the nausea. I suspect I might have gotten a little bit of food poisoning from the underdone chicken.
At least I’m not fighting down vomit anymore, but still feeling nauseated and sick. Understandably, all this has made my mood rather blah too. I just want to huddle under the covers and hide from reality right now.
The past few days have been rough. My back went out again, so my upper back and neck have been causing extreme pain again. I think the gluten free diet isn’t really helping much, as all the things I thought it was helping have suddenly flared up the last couple weeks. My GERD has been awful to the point I’ve had trouble swallowing again, the night sweats are back, and I seem to be having a widespread inflammation flare-up again.
I know I shouldn’t have put so much hope on the diet to solve all these issues, but I feel like I’m so desperate for something to make me better that I often put high expectations on each new treatment idea, hoping it will be “the one”. Of course, I probably need to accept that since I have Ehlers Danlos (a genetic connective tissue disorder), that nothing is probably going to be that cure-all I have been hoping to find.
How I wish that there was a cure to whatever is going on inside me. I often long for one of those scanners like they have on Star Trek that could easily pinpoint exactly what is going on and what the treatment should be without being invasive. I guess I was born too early for that. We might be headed that way technologically, but it is probably well off on the horizon.
Yesterday I went to the local children’s hospital to see their genetic specialist for Ehlers Danlos testing. While there, I got bored and took a couple photos of a set of sculptures I liked:
My favorite is the feet one. I love odd angles and close ups of objects, because it shows details most people don’t notice. I did add a bit of a filter to the first picture to make the colors stand out more from the darker aspects.
As for the visit with the geneticist, it went fine. They did a mouth swab to test my DNA, so no pain involved. The geneticist is pretty sure I have hEDS (hypermobile Ehlers Danlos) since I meet all the criteria, although he wanted to rule out other kinds like vascular and classical EDS, hence the test. I just hope it isn’t vascular, as the average lifespan of someone with vascular EDS is only 48.
I’m feeling a bit like this weird-looking guy I sketched the other day. Dazed, confused, and like I’ve been through the wringer. I am so very happy I won my SSDI case, but I’m almost a little in shock and kind of feeling like “what do I do now”? After fighting for something for so long, it is kind of weird to actually get it and have the fight over. I’m not complaining at all, I am SO very thankful, but my brain just needs some time to adjust and move from the mentality of scarcity and fear to one of feeling more secure.
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!