Welcome to my life, Crash course
More not very good updates.
So it turns out that my memory issues and some other symptoms are worrying my doctor although it seems like everything is so slow here that I don't know when I will even be able to get in to the specialists that I desperately need. My gastro doctor still isn't scheduled until July and I wake up at least every other day with vomit in my mouth. Choking and aspirating are a way of life for me now and they have been for quite a few years.
So many hopes that this area would be better for me medically and yet I have never been so very completely miserable and helpless. More testing done by my doctor until then I have had to get an extensive amount of work done on my teeth as it seems that most of my teeth are breaking down and crumbling as my dentist said verbatim. "they are all like dust". Apparently eating soft foods still is too much for them to handle. Once we got in the car I couldn't stop sobbing. Here I am going to be turning 27 in a few weeks and I have such a bad memory that I often forget things that just happened and at least eight times my family has repeat to me something I should already know. My room is covered in notes to myself and multiple calendars trying to keep track of everything even with a pill container right beside me it can take me 2 hours to remember to take my medicine. And I'm barely awake for 4 hours a day with exhaustion going even deeper than my bones. Inability to remember if or what I've eaten and confusing what day I changed my clothes and what days I didn't. Days blur together like never before.
My body pain is getting even worse especially since the pain patch didn't work and now the pain medicine film that I take twice a day(a thin thing of medicine that goes in my mouth and slowly disintegrates, like one of those listerine strips-pretty fascinating if I am honest)has not been upped in dosage and so it is no longer helping with my pain at all. My "pain doctor" refuses to up the dosage even though he promised that he would help me get to a point where I could take a shower each day and change my clothes each day and yet I'm so far from that that I have gone backwards since we moved here. I have a new appointment with his NP this week and it is my last hope to try and get them to see that I am really really struggling and I'm not in any form a pain medicine addict I just have a body that hurts and I can't handle it on my own.
My motor skills are even more drastically worse than they were last week. Barely being able to feel in my hands for the past few months and the inability to move them worsens. Having my hands move on their own is probably one of the very worst things. Complete lack of control is something that we are not prepared for even when we become elderly and yet here I am at 26 barely able to feed myself with utensilslonger than 1min.
Anger from pain and frustration from a failing body is something I am having to work on a lot though previously I had had control over it the past 12year. Also I am working very hard on positive thinking, uplifting thoughts, and moving forward without looking back. Thankfully Lucy Luu helps a lot with that. She always helps me laugh even after crying most of my days away.
If I can ever get enough energy or some improved hand use again I will definitely be writing multiple articles on aging bodies/disability and how it affects people and everything in their life.
Many thanks to my dear friends who have sent me things to help uplift me. As many of you know receiving gifts is my love language and I am feeling very happily loved. And in a very vital time too so I immensely immensely appreciate it. Words are also gifts too so thank you for those of you who've reached out to see what you can do to help and to give encouraging words.
It is really heartbreaking to me to realize that it's been almost ten years since graduation from high school and yet with my memory being so horrible and most of my life being slept away I can only really remember my childhood the best. Thank goodness for my happy childhood! Ignoring pain, I made a lot of good memories that I could look back on as I lay almost completely bed bound.
Anyways, enough of that I just wanted to update most of you all in one fell swoop so that you wouldn't feel forgotten as I take so long to respond to messages.
I am so extremely blessed to have the family that I do and the friends that I do. I am surrounded by angels and all the very better for it. My many many thanks #AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Insomnia #Lupus #Lymphedema #MightyTogether #PosturalOrthostaticTachycardiaSyndrome #RareDisease #SuicidalThoughts #MentalHealth #CheerMeOn