This week has been stressful. First off, I have a sick kitty that has recently cost us over $700 in vet bills (for severe diarrhea) and even after spending all that money and giving him antibiotics and treating him for parasites just in case, he isn’t any better. The clean up hasn’t been any fun at all either.
I’m not sure if he is not any better because something else is wrong with him or because we had a hell of a time getting him to eat the food with his medicine in it. I don’t know how much of the medicine he even got down. He has a follow up with the vet this Friday, so we’ll see what they say. Maybe they’ll give us another way to give him the meds or run more tests to see what is going on. Either way, more $.
I have also been struggling with exhaustion, full body achiness, and general malaise since our trip on my birthday near the end of October. My CFS/ME is flaring big time. Chronic fatigue syndrome sucks and the name is misleading, because it is so much more than fatigue. It is more like the worst flu that keeps on going and going and coming back again and again.
Wish I had better things to report, but that’s the truth, and I always try to be honest with you all.
Yesterday I had my regular neurologist visit to follow up about my migraines and while there I was also diagnosed with Essential Tremor, a genetic condition that is often confused with Parkinson’s from the symptoms. It most commonly affects the hands, head, and voice, but can affect any body part. It can also affect balance, mood, and possibly memory.
My balance, hands and voice are already affected pretty bad at times which scares me since it can be a degenerative condition and it can eventually become hard to speak, eat, write, or in my case, make art, since I am an artist.
My tremors started out in both hands a few years ago and have definitely worsened. At first, I only noticed that I could never take a good picture because I couldn’t keep the camera steady enough to take one. It has worsened since then and affects more daily activities, such as writing, typing, pouring/drinking liquids, dropping almost everything, etc. I noticed the voice tremors starting probably a year or two after the hands.
My balance has noticeably worsened to the point that I often start to fall over while just walking around the house or even standing still. It isn’t unusual for my husband to push me back up as I start to fall over like the Leaning Tower of Pisa.
For a long time I tried to dismiss it because I didn’t want to think something might really be wrong. I tried to blame it on anxiety or weird medicine side effects. I am glad that I don’t have MS or Parkinson’s which I feared sometimes. What finally made me bring it up with the neurologist is that the geneticist I saw for my Ehlers Danlos testing a few months ago seemed concerned by how much my hands shook.
The last thing I want to do is take yet more prescription medicines, but I am considering it in hopes that it might slow down the progression and alleviate the symptoms a bit. The only bad thing is that all the meds they use to treat this condition can worsen my depression, so the neurologist wants me to get the ok from my psychiatrist before we decide on a med to try.
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.
Sorry I haven’t written in a few days. I threw my back/neck out again and it has been bad. Probably the worst it has ever been. I have been constantly downing pain killers and muscle relaxers and still no change. Usually the worst only lasts a day or two during these flareups, but now I’m on day 3 and it still hurts to move in any direction.
Naturally, this has me rather depressed too. I had appointments and fun plans this weekend that I had to cancel due to the pain. I feel like it doesn’t matter how hard I try to be social or how much I try to take good care of myself, my efforts always end up jinxed.
This is why I normally end up isolating myself, because I feel like all my health issues make me unreliable. It feels like no matter how understanding other people are, when I have to call off at the last minute several times, they start to get frustrated (and understandably so).
Man, I’m pretty bummed today. I was supposed to go ghost hunting at a local cemetery with a paranormal investigation group, but yesterday my earache turned into a raging ear infection and between the ear pain and the nausea from the antibiotics, I had to choose to stay home and rest. I guess there will likely be other opportunities, but still wish I could have gone.
Among other news, my first SSDI payment got messed up and didn’t come. Took me two days and multiple phone calls to multiple agencies to get it solved and will hopefully get my payment within the next couple weeks. I had a huge meltdown over the whole situation Thursday, which probably didn’t help my immune system and may have contributed to my current infection. I can’t help but notice that my already weak immune system takes a nosedive when I’m stressed or upset.
Even thinking about it now makes me mad lol. The worst part was that the automated phone answering systems would NOT let me talk to a live person for the longest time! Ugh. It was like a labyrinth to find my way through to talk to a living, breathing human. I realize this post is pretty negative and maybe a bit whiny lol, but that’s where I’m at today. Hope you are all feeling better than I am at the moment!
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.