First post of the year.

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.

And now for a bit of positivity.

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.

Yeouch!

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.

Mixed feelings.

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.

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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:

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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.

Happiness :3

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.

The waiting game.

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.

Supreme frustration.

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.

Endoscopy aftermath.

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I won’t lie. I found the instructions difficult to follow. Prep for an endoscopy is¬†unpleasant. The instructions I received were;

  • No solid food later than 7 am
  • No liquids beyond 10 am
  • Just bear with it til the procedure is over. (It being the hunger pangs and dehydration)

The lack of water got me the hardest, since today was a diarrhea day so I was severely dehydrated by the time I made it to the hospital.

Since I was severely congested and had sensitivity to several medications on top of my normally low blood pressure, my GI went with local anesthesia. I’d like to think it worked well. I imagine it would have been absolute agony without that.

On account of my totally clogged nostrils I ended up puking a lot during this process whenever my throat dried out from breathing in though it. I’m so glad I followed those instructions as that would have been disgusting for everyone involved otherwise.

Then procedure itself was intensely uncomfortable. The numbing agent didn’t take away all of the pain and I couldn’t control my urge to swallow as well as I thought I would.

Afterwards they gave me some yummy soup and kept me in the hospital for an hour or so to make sure I was alright. The gas was probably the worst part. My tummy was already painfully distended so that extra inch or so the gas added was way above my ability to tolerate.

No news yet on whether I need a colonoscopy or not but I know that they’ll be more stool tests in my future.

Thoughts after my second week seeing the GI

I’ve realised after going to see the GI that I’ve become really shameless form a societal point of view.
I disrobe for people I don’t know in the hopes that they can fix what ails me. They can see the bits of me that no one else can through MRIs and other tests.

That being said seeing a new doctor for any reason is a tedious process.

The results of the tests for the first week was anemia and an elevated WBC. I was given Zental to rule out worms and 10 days of an antibiotic.

The second week saw the results of my stool test being positive for large amounts of E. Coli. I was told to finish my course of antibiotics because the one I was taking was effective against E. Coli.
At the second appointment I was also scheduled for a endoscopy tomorrow but it will be rescheduled since the doctor had an emergency to deal with. I didn’t realise how nervous I was until I heard it was rescheduled.

My course of antibiotics ended yesterday morning. Nothing has changed. If things go according to the usual routine I’ll be in agony for the next 2 days. I’m already feeling the fist pangs of pain.

There’ll probably be another stool test in my future as we try to figure out if another parasite is involved.

My body is rebelling from the lack of activity. My legs have started popping out of the joints. So I would love to get some level of relief from these tummy issues so I can get back to my routine soon.

I can only hope that my stomach is okay and that my endoscopy goes off without a hitch.

For now though, its more sleepless nights with stand up comedy. These comedians are literally holding me together right now. When I’m laughing I can forget the pain which is great because there isn’t a part of my body that doesn’t hurt right now.

Gastroenterology woes

Last week Tuesday night my hubby rushed me to the hospital because my torso had been swelling for the last two weeks or so. I’m accustomed to some measure of bloating but this was ridiculous. I began having trouble breathing so off to the hospital we went.

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Thursday, night before I went to the hospital. As you can see my torso is horribly distended.

The doctor on call thought it might be an inflamed bowel or intestine and had a GI agree to see me on Thursday of last week on a rush appointment. I got the required blood tests on Wednesday and Thursday dawned with me fretting over where in the hell my health was going.
Wednesday morning I had a dissociative episode and burnt my hand badly.

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Don't worry, the white stuff is burn ointment.

I haven’t had one in a while so until I see a therapist I’m assuming that the extra stress set me off.
I didn’t learn much on my appointment with the GI last Thursday. I have to so a colonoscopy and an endoscopy at some point but for now it was Zental and the antibiotic Cifran because my WBC was too high. He also needed a stool sample.
Things have been progressively worse since last Tuesday. My torso seems to have reached the limits of its ability to distend which just means that I spent a lot of time sucking it in so the tissues won’t feel like they’re tearing apart.
As the days pass the pain gets worse and worse. I’m afraid of eating as it makes the tummy pains much, much worse.
My seborrheic dermatitis is back so my scalp is burning. It feels like pouring hydrogen peroxide in a wound.
Headaches are a given in this situation. And I have a bunch of ignorant people to deal with on top of it.
This has just been one of those weeks. I wish I could sleep until my next GI visit.