BoneSplints

So many new things happening as of late.

Humera helped not a bit. The first month and a half felt great and it reminded me the good of being human. Five months later and my rheumatologist put me on a new medicine called Enbrel(amongst my 55 other meds I take for my many conditions).

I took my first dose on Sunday but I feel as bad as if I wasn't taking any meds whatsoever.

Years ago my EDS meant I had to learn to walk more carefully so I didn't dislocate my joints hundreds of times a day and using my tendons wrong, bruising them left and right. Now I have to relearn and the pain is simply horrific.

And my whole digestive system is a mess of course. Swallowing ten times just to get one bite down really takes any good out of food. Constant nausea and vomiting doesn't improve anything whatsoever.

And a hundred more symptoms of misery makes my huge mountain of existing even heavier.

Yeah I am blessed in many things but health or ease of existing are most definitely not on any of the lists.
Only a very cursed body that does work hard to try to do its best in aiding me, poor thing. Thankful for the small bit of good it tries to do while also wishing I could trade bodies with a healthy person for at least one day.

If only!😕🫤😔

Alas, I wait still for my new meds to start working with fingers crossed and tears streaming down.
Thank heaven that I at least have a few doctors that are trying!
Such a long 29 years of devastating suspense!!!

May the holidays bring the light and hope you deserve this season. And if not, may these Christmas lights on my family's tree lift your soul for even a small bit of time ✨️✨️✨️

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AnkylosingSpondylitis #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #CheerMeOn #Upallnight #IfYouFeelHopeless #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Eczema #Fibromyalgia #GastroesophagealRefluxDisease #Grief #gallstones #HypothyroidismUnderactiveThyroidDisease #Hypersomnia #HighBloodPressure #Headache #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PsoriaticArthritis #Psychosis #plantarfasciitis #PanicAttack #PanicAttacks #PTSD #MentalHealth #MightyTogether #MightyPets #Migraine #MemoryLoss #musclespasms #MultipleAutoimmuneSyndrome #RareDisease #RheumatoidArthritis #SuicidalThoughts #Scoliosis #sciatica #ShinSplints #Sleepwalking #MajorDepressiveDisorder #nightterrors

I woke up at 11:30 or so to an urgent voice whispering that said: "good dog, good dog."

As I sat up, my eyes were drawn to one of my windows. It was someone in a Darth Vader mask who had peeked their head around my window cooler to look in my room.

Normally I sleepwalk and hallucinate, I never am fully awake but during this I absolutely was aware and terrified. I pretended to casually grab my phone. I called my mom and dad who take care of me but got only voicemail. I was shaking and so I called 911 so whoever it was would know I was asking for the police. The mask through my window disappeared and I ran to wake up my parents.

Years ago in our first house someone broke into our front window where my Lil bros room was. They cut the screen. But unexpectedly I had set the alarm that night so it went off. My parent thought I had wrongly set off the alarm and then fell asleep hard. It wasn't until my brother got home from school that he noticed the cut screen (we lived down the street from a drug house where we had people on drugs stealing and breaking in and scaring all our neighbors all the time. They even had an attempted murder where a girlfriend was chained up and stabbed multiple times.)

Yeah, dark stuff. We found out the alarm had been set off when the wannabe thief tried to open my brothers window. That scared the bad guy away. My parents thought it was me so they told the security it was nothing but after us all talking we filed a report and thanks to our cameras the police got him.

So flash forward to last night where it was my bedroom window at the front of the house hidden by a bush even. We have had people break into vehicles and take things so it makes sense to me that not only was I not sleepwalking but it was very real. But my parents don't believe me. Again. The people who mean the most to me never believe me and I have to fight hard against any tiny doubts in their minds. I am so sick of it and I was and still am terrified of what happened. But I seem to be the only one who cared.

Family can be great but they can also cut the deepest. 😥

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AnkylosingSpondylitis #bedbound #BoneSplints #ChronicFatigueSyndrome #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia Great #Grief #gallstones #HypothyroidismUnderactiveThyroidDisease #Hypersomnia #HighBloodPressure #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #PanicAttack #PanicAttacks #PTSD #Psoriasis #PsoriaticArthritis #Psychosis #plantarfasciitis #MentalHealth #MemoryLoss #MightyTogether #MightyPets #Migraine #SuicidalThoughts #Scoliosis #sciatica #ShinSplints #Upallnight #CheerMeOn #RareDisease #RareDisease #RheumatoidArthritis #Sleepwalking

Hello Christmas!!

It's so hard to be so cute!! 😍😍😍

Miss Rosie with her boyfriend named Bruno. He is a Great Dane!!

A new day, another fresh start! And the memories of yesterday make room for the new ones of today.

Pick an affirmation for yourself

Dear heaven my mighty friends, I had an especially horrid night last night

🙌🙌🙌🙌🙌

Some laughter for your Monday!!

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