Fibromylagia Frustrations

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Hi guys! It is been a while since I gave a health report. Sometimes with dictation Apps I want to scream! For instance right now it just deleted everything I had already written. Somehow it thought that I said the words undo it. The joys of not being able to use my hands properly. The little women review that I wrote last time actually took probably 2 1/2 hours for me to right with hunting and pecking type motions. And even though I was just hunting and pecking with my main two fingers I still had a lot of pain in my hands and wrists afterwards. That’s not of course to say that I didn’t enjoy seeing Camarillo Skyway Playhouse’s Little Women production. So let’s talk about health…

Today I went to see a new neurologist. He was a very how do you put it matter of fact type doctor. He was reading notes on the computer from my previous doctors I assume and listening to my answers at the same time. He did do a check up and had me walking. It was very interesting because I did not have my cane and he had his hand on my elbow to steady me. He kept asking me to walk faster and laugh out loud Thankfully there is no falling on the floor that would’ve been very embarrassing. Not sure if I accomplish what he wanted but it was an experience. He seems to think that I have fibromyalgia as my first rheumatologist diagnosed me and so did the neurologist at Cedars-Sinai. So what do we do with this? He is going to be giving notes to my pain management specialist and my primary doctor. He’s just keeping up with physical therapy and of course the usual exercise. He even mentioned possibly getting a personal trainer to help me on a day-to-day basis. I don’t think that is one of the things insurance covers LOL. So what am I thinking?
I would love for the doctor or any doctor to say that I have one diagnosis and this is how we heal it. Unfortunately no one has ever been out to do that for me. Even the doctor says that it is likely I have several issues including fibromyalgia, cervical stenosis, possibly dysautonomia which that other rheumatologist suggested, and something to do with my lungs that the pulmonologist is working on. Yes. Deep sigh. If only things were simple LOL. So where does this leave us? Sometimes I feel like we’re always going back to square one. I have tried diets (eg. Whole30), acupuncture, herbal supplements, et cetera.

Oh my gosh! Speaking of difficulties with dictation apps, it just decided I needed to open another webpage and closed out of my blogger page just now. I have had to go back and retype or redictate several sentences. Thankfully blogger saves automatically at different time points. But you can see how silly and crazy it can be and how difficult type/dictate a blog post every once in a while. Let alone emails and text messages. Okay off my rant and back to my original post…

I was saying it seems like we have tried most everything that Medi-Cal here in California Will cover. I am very grateful – – – please don’t question – for all the wonderful doctor and money saving opportunities I have had through Medi-Cal such as my great surgery at USC Medical Center. It has been a true blessing these past few years. But hopefully we are looking at the bright side my disability will come through this summer and I will be eligible for Medicare. That does mean payments but I will have my disability check to cover it. Sorry I hope this is not huge Post full of errors and run-on sentences.

So the next step… I am looking into a clinic in Mission Viejo that my brother recommended. His coworker had a great experience there and was able to fully recover from her own autoimmune disease. There’s a lot to research and look into. But we shall see! I am just so grateful for the support I have from my parents and my brother and my good friends. Where would I be without you all?

Lots of love. Time to go ice my elbows and my neck maybe take a nap. LOL. Hey all in the day of the life of someone with a chronic illness, right? XO

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