Man, it’s been a long time since I last posted here. Things have gone downhill rather rapidly since then. It feels like I lost my way when it comes to writing. Between the frustrations of severe brain fog and dealing with a certain type of religious person. I lost my zeal to do something that was offering me a level of comfort.
Last July I nearly died. I’m extremely grateful to the doctors and nurses who took care of me. And my beloved who spent that week preparing to lose me. Also, my friend and his wife and son who were with me when my darling couldn’t be.
In August, I was administered a course of Prednisone after developing temporary paralysis in my lower body. I’ve been dealing with the side effects from that since. The weight I gained wiped out my weight loss progress and I’m now at the heaviest I’ve ever been at 195 pounds.
Cut to last week when I ended up back in the ER because fluid was building up inside my head. After some testing and an odd 24 hour urine test it was decided that we should address the psychological aspects of my Fibromyalgia and Irritable Bowel Syndrome before continuing with testing. The psychiatrist they asked to see me was a very pleasant man who said therapy might prove useful given past events in my life. So, I’ll be seeing him soon.
Sadly, the day after I came out the hospital I ended up by my physiotherapist who put me on Calcort because I had somehow managed to tear both deltoids and the trapezius. How I managed to do this is unknown. The most obvious reason might be the frequent subluxations and occasional dislocations.
I’ve got one week remaining with the course of Calcort. Then I guess we’ll see where it goes from there. I’ve got the usual side effects from the Calcort so it’s been quite difficult to say the least.
Yesterday we carried Gin to the vet. He’s fine. Luckily, his issue seems to be related to how thick and long his undercoat is. Treatment is simple, cat chow and shampoos designed for shedding. He’s probably not going to like having an extra bath day for the week.
Unfortunately, I also had to see a doctor urgently myself. Apparently, the vaginal issues haven’t been resolved. After doing yet another course of Avelox I found myself seeing another gynecologist. Avelox is supposed to be very effective against Klebsiella bacteria and this time it had no effect outside of intensifying how bad I usually feel. We’ve taken another vaginal swab so now it’s the old waiting for lab results grind. I’ll be intensely annoyed if it’s yet another gut bacteria that made its way to my womb.
Meanwhile, the digestive trouble has gotten worse. I’m seeing visible signs of severe inflammation now so I’m guessing the diagnosis is going to end up being colitis. I’ve no idea how to schedule the next round of tests. Hard to tell which is the most important when they’re all similarly bad.
I’ve exhausted all the current treatment options for fibromyalgia. I am getting some relief from it which I’m considering a win, compared to how bad it was at Christmas last year. I’m a far cry from self sufficiency but I’m hopeful that in the next few years we’ll understand fibromyalgia much better.
Now that I’m allowed to exercise, I’m hoping that my muscle grade will increase enough that I can tolerate extra weight again.
I am severely depressed right now so it’s hard to focus on how much progress I’ve made health wise this year. I’m extremely grateful to my doctors for the excellent care they’ve given me. I’ve no doubt that without their efforts and those of my darling I’d have done something unfortunate to myself since the first half of this year was brutal. I’d wake up and have to force my joints back into place or screaming because my body was pulling itself apart. I can only imagine how it must be for my darling to witness these episodes.
Here’s to hoping that the upward tick continues into next year.
This saved me a bunch. Which is great because the hubby needs to have some tests done as well.
Well that was scary and ridiculously painful. I can’t help but wonder; if a partial kneecap dislocation feels this bad what the full dislocation would feel like?
I’m actually terrified of knee issues. When I was a child, one of my friend’s kneecaps (yes both kneecaps) just shattered. One minute he was standing there next minute he was on the ground screaming.
Since then, every time I get so much as twinge in my knee I tense up.
Today was a busy day. Generally I try not to see multiple doctors in one day if I can help it. The chronic sinusitis had other plans though. So after struggling to breathe for the last few days I decided to see another GP for a second opinion on the sinusitis. My sinuses were seriously inflamed so this is the stash I’ll be taking over the course of the next month or so.
The GP said that sinus related issues are super hard to treat and since mines is due to a deviated septum there may be a surgery in my future.
The weirdest thing I got today was this:
I just used it. Its quite an odd feeling but it’s not uncomfortable. After taking all my meds and doing the nasal irrigation I can finally breathe again.
Things seem to be going okay on the Gastroenterology front. My current diagnosis is Irritable Bowel Syndrome. The current treatment is Alevian duo 2x per day, 15 minutes before meals. It seems to be getting better the longer I use it. Luckily, I won’t need to rush to do the colonoscopy thankfully. I just need to do it at some point this year.
I’ll need to see an ENT at the end of this course of meds for the sinusitis because its probably going to continue coming back until my septum is fixed. The incessant burning in my scalp could also be because the inflamed sinuses are compressing the nerve the runs through my ear. At some point I’ll need to see a dermatologist about the tearing and soreness going on with my fingertips.
I have mixed feelings about the news I got today. Its mostly kinda depressing. Doesn’t make any sense getting angry at my parents yet again.
At least I’m making progress with my health even if it seems like I’m not. I need a break from seeing that hospital. I’m glad that the next appointment is at the end of the month.
When I had the endoscopy 2 weeks ago I was told that I had no serious issues with my esophagus, stomach and duodenum. There were signs of inflammation that the GI believed was due to my medication intake. Waiting for the biopsy results seems to be giving me a stress induced ulcer.
It odd for me to be this affected by stress but I suppose that not being able to exercise and being off the generic Prozac has a lot to do with that.
My health seems to be getting more and more complicated. My stomach hasn’t reduced in size since the treatment for E. Coli. In fact it seems to be holding steady at around 6 inches of what appears to be permanent bloat.
Some of the diseases being thrown around to explain my complicated health situation include connective tissue disease and a blood related disorder. There’s still the fact that I need to see a therapist to deal with my depression and dissociative episodes since antidepressants and anti psychotics have failed miserably.
Right now I’m feeling more than a little useless and so very lost. I think I’ll buy a kindle so I can escape. I’m probably very close to my limit for dealing with these things gracefully.
I wish I knew which problem to focus on first.
When you’re sick, you find yourself going on a quest to discover the source of your illness. The idea being that if its got a name, its got a cure.
Sadly its just not that simple. If you’re lucky you’ll be diagnosed with a common ailment and from there you can move to some sort of treatment to improve your quality of life. If you’re luckier you’ll only have one condition with no others complicating it.
I have not been that lucky and my bane has been ignorant and arrogant doctors. Its very common for me to see a doctor and have my problems brushed away as overreacting. This is sadly very common with things like fibromyalgia where you can spend years of your life with doctors accusing you of lying while you suffer.
Lately everything has been dislocating. My legs keep popping out of my pelvic joint, my ankle, hell even my wrists are doing it. I’m glad that they aren’t as painful as my shoulder dislocations but I suspect its a matter of time.
I have mixed feelings about this because I’m trying to see what’s wrong with my digestive system at the moment which is pretty expensive. The distension is my stomach seems to be making my spinal issues worse which means no exercise. So its not surprising that my joints would become unstable.
Yesterday was awful. We went apartment hunting but a few hours in and I was no longer able to keep my body upright without crying. My traction collar is supposed to help with my cervical pain but its not working at the moment.
Hell I’ve given up on a cure. A slight reduction in pain is all I’m asking for at this point because this crap is slowly but surely driving me insane.