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.

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Today has been quite awful. Last night I went to bed with terrible pains around my eyes and nose. This morning I awoke to more of the same, this time with intense nausea and hypotension. 

Worse than that however, was the intense pain radiating from the trigger points on my hips. As they rotate in the socket I’m mewling unconsciously. I suppose I can no longer avoid the Tramacet at this point.

I had a cup ramen so I’d have something in my stomach before taking the Tramacet and passed right out.

Woke up an hour later because the delivery man called and had my first cup of bulletproof coffee. Surprising, this did help somewhat. The hypotension and low blood sugar issues seemed to melt away leaving only the Tramacet induced lethargy and the dulled pain.

It’s got quite a unique flavour. I used this recipe and found the vanilla essence to be overwhelming. A few drops of stevia made it more palatable. I’ll switch up the flavours tomorrow and see if I have similar results.

Before I drank the coffee I was quite scared. I was seriously considering calling an ambulance. I feel calmer now so I’m going back to bed.

With luck when next I awaken, I’ll have had significant relief from this new hell.

xo

January retrospective

It seems like there’s a tendency with my fibromyalgia to worsen during the month of December. That’s been the case for the last 3 years or so. I had hoped to have avoided that fate last year but it reared its ugly head 3 days before New Years.

I have never experienced pain that intense before. So much that all I could do was whimper, scream and cry. Luckily, I didn’t start this year with most of my limbs damaged. I also learned that fibromyalgia is somewhat degenerative. You’d think I’d have noticed on my own but nope. I hadn’t really considered that possibility, since most of my energy was focused on finding was to cope with the pain.

New Year’s Eve found me in the ER at the St. Augustine Private Hospital since I had spent the 3 days prior screaming my head off. Here I underwent a new batch of blood tests and x-rays trying to determine if the pain was due to getting injured. (I have dissociative episodes so I don’t always know if I’ve injured myself). The x-rays were fine. The blood tests came back with elevated white blood cells. And the final result was that the fibromyalgia had worsened.

January was quite depressing for me because I missed the entire months worth of classes due to the amount of muscle relaxers that I was on. I’m not so far behind that I can’t catch up on my own but I worry about the side effects of the higher dosage of Cymbalta. It’s nothing that I wasn’t expecting but I hadn’t realised that the brain fog would be quite this bad. It’s to the point where it literally hurts to think.

As per usual we’re always looking into possible solutions and Tempurpedic beds came up. I was able to try out all the variations in the showroom located at Aripita Avenue. To my suprise the beds provided a ridiculous level of relief. For the few minutes I took to try them out I had no pain. There was a sense of my body feeling as if it’s weight had been lifted off my muscles and bones. They didn’t hurt my soft tissues at all unlike my current bed.

Now I find myself impatient because knowing there’s a solution and not being able to obtain it immediately is intensely frustrating. I’m trying my best to not add unnecessary pressure to my hubby so we won’t end up messing up our finances. The beds are quite expensive after all.

I’m writing this while waiting for the Tramacet to kick in so if there’s any gibberish, I apologize.

xo

Is this my new normal?

My health has been getting worse since the middle of last year. Christmas was difficult, I got my first sprain on Christmas eve. Unfortunately, the strain became chronic and there was a snowball effect. Ending with all my limbs being either strained or partially dislocated before New Years.

It’s never the same issue unfortunately. Some of my doctors have had more success than others. The last problem had to do with muscle/nerves. Which just added to the list of tests and surgeries that need doing. Being in and out of the hospital means that scheduling any of these things far in advance is a waste of time. I’m terrified of making the wrong choice.

One of my friends asked me what my new normal looks like so I’ll address that here. If I want to leave the house I must have a first aid kit on me at all times. Granted, it’s getting bigger as time goes by. These days my kit looks like this:

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It’s hard to know when something will go wrong so I plan for as much as I can. Since there’s a chance that this might help someone in a similar position here’s the break down. I’ve got a unilateral ankle stabilizer for the random sprains and spasms. Tramacet for the damage that the spasms leave behind. Lyrica keeps the spasms at bay but it does nothing for the pain. Dolobene gel stops my muscles from developing clots because they’re always tightening. 12 hour Gravol for the constant nausea that the IBS causes and re-hydration salts in case the IBS flares. Brulidine cream helps when my finger tips tear thanks to carpal tunnel. The eyepatch helps with my migraines but not so much for the cluster headaches unfortunately. The inhalers help me when my throat closes up. And allergy meds because you never know what’s in the food available and bees so much goddamned bees!

I still need another ankle stabilizer since both feet have a tendency to sprain at the same time. I’ll need a shoulder stabilizer at some point since I have chronic partial dislocations after getting hit by a car a few years ago.

After I see the neurologist and get the muscle and nerve tests done I should be much closer to normalcy.