I forget that my normal is not anyone else's normal. And being that I'm trying to ease awareness for invisible autoimmune diseases maybe I should open up more and l let people in.
Why am I so damn tired in the morning when I wake up? Because usually that's shortly after I've finally fallen asleep. I have to hide this and not complain because the mom job starts and I'm left in charge of the kids around 5 am ( sometimes we sleep till 7) when chad heads off to work.
Why are my lips raw, bleeding cracked and stuck together? Because Sjogren's doesn't allow me to produce saliva, so if I selpt for a while (even with medicine and vasiline on)my lips get blistered.
Why are my eyes red? Same as above
Why does the blankets look like I struggled through a storm all tied up? Because I've awakened every hour at least to try to get comfortable. I have 3 down comforters and a sheet to create weight and hold my uncontrollably spasms.
Why do I have like 17 pillows? Because I need to prop myself up laying down for a long period to help with all th GI issues. I have constant burning in the back of my throat and there are chuncks of disgusting vomit stuck from my constant uncontrollable coughing.i need to be sipping on warm liquids and sucking on special saliva producing tablets.
Why are you drinking coffee in the middle of the night? It's the only thing that calms my stomach especially being that I'm not standing or in perfect sitting position. Coffee keeps my esofugus open and pushes the bile back down. I also have to suck on saliva tablets to create more liquid. Sometimes my lips are seriously stuck together so tight they bleed when pullin apart with help of my fingers.
The ceiling fans on, let me let you hear it.: it's one of the most crazy things for my ears and brain. I need it on though to get me through the miserable hot flashes and my spouse likes it on. The sound goes from super loud like its flying down at me and is spinning so hard that it's going to fly off then backs way off and I can barely hear it. This is they cyle it goes through every few minutes.
Night time I'm also prone to bladder and bowel accidents. It's hard to tell if it's gas or oh shit, its shit! And it's a hike to the Bathroom. I lost my dignity long ago after being admitted in hospitals and nursing homes. I have accidents. I am 34 it sucks. I no longer have the warning neither do I have the control.
My nightstand is piled with essential oils to help in calming and GI, hormones hot flash and insomnia. I'm just so severe they don't cure they are like all my prescriptions supposed be helping the symptoms Supposed to be making my life more easier to function through.
I would love a cure to Sclaroderma and Sjogren's. I would like to get the chance to sit down with both of their leaders and chew them out. I would ask them to hold off until much later in my life if they will only work a deal and not lift their disease off. I'd explain to them that I'm only 34 and they are taking me away from so much of not only mine but also my husband and children's life. If they were still pricks and I couldn't plee bargain them down, I would let them know how much they suck before I punch them in their face!
Recently I've been doing more than before. That's not because im getting better, not being negative, just honest! it has todo with my pain management and help from the IVIGs, we see that neurologist at the U of M early next week. Lots of test, then hopefully we can continue this plan since I'm walking now!!! Fingers crossed.
I'm gonna try to sleep a little bit now