Petite Trésors Rescue & Sanctuary -
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A Lifetime of Autoimmune Issues
The Teen Years
Back when I was a teenager I developed a scalp rash called seborrhea that my mother took me to the dermatologist for. He told my mother it was her making me nervous that caused the condition. I don't think I was familiar with the term stress at that age, but clearly this was my first autoimmune issue. Although it continued as long as I lived in the same house, the condition was managed with medication. When I married and moved to my own home, it went away, only to return whenever my mother would visit.
Married at 21
Shortly after marrying at 21 I started having stomach issues. Back then the diagnosis was Acute Gastritis, now called Irritable Bowel Syndrome
25 to 39
After my first child was born at 26, I became anorexic. Had my second child at 29, 1 month before turning 30. I was still dealing with IBS
Diagnosed with breast cancer, had lumpectomy, alixary node disection and radiation
My husband lost his job and moved to the midwest where he was transferred. At the time we were separated.
Eventually my daughters and I followed although we were all very stressed and unhappy.
Now at 66
I have been diagnosed with Sjogrens, Fibromyalgia, Chronic Fatigue, Sciatica, Acute Anxiety, Acute Depression, IBS, TMJ, Breast Cancer, BRCA, Lymphedema, PTSD, Incontinence and most recently diagnosis of Chronic Strokes, Small Fiber Neuropathies, Autonomic Nervous System Impairment and a Heart Blockage.My
hands drop everything (trigger thumb I just read on the Smart Patients forum is a Sjogrens symptom, however, a few years ago when I asked my Pain Doctor for a referral to a Hand Specialist he sent me to get my neck fused), unbearable taste of salt, breaking teeth, eyes without depth perception and acute corneal abrasions and Raynaud’s (all Sjogrens issues). The latest diagnoses of Chronic Strokes, SFN and ANS explains shortness of breath, sensitivity to pressure changes, not being able to regulate my temperature, blood pressure, sweating, coordination and movement, speech changes, swallowing which causes choking, more vision issues and controlling eye movements, confusion following conversations, paying attention, remembering words, spelling, names of objects, recognizing faces, losing thoughts in the middle of speaking, extreme poor balance, neuropathy, aphasia, sensitivity to light and sound, poor concentration, thyroid disorder, (a side effect from the Radiation for breast cancer) and Brain Fog. I have left the stove on, more than one occasion, and left.
I can’t drive anywhere I am not familiar with because I can’t see street signs. I can’t drive in the dark at all. It takes me extra time to see anything because of the severe depth perception and others think I am starring when I am simply trying to focus so my brain can give me a name for what I am looking at. I fall down stairs and fall off curbs. I constantly break things because I am trying to put something on a table but miss the table because it is not where my eyes think it is.
Chronic Fatigue alone makes getting out of bed in the morning impossible. Some days I can’t get up until 4:00 pm and then I may go back to bed within an hour or fall asleep in a chair. Other days stress keeps me up for multiple days and causes acute abdominal issues and vomiting. I now have a script for 30mg of Adderall XR, which works well to keep me up long enough to function.
The muscle and joint pain, along with sciatica, make standing or sitting for any length of time impossible. The mouth sores, earaches and headaches will continue and get worse, because, they are all from Sjogrens which is no longer managed since I am no longer a candidate for the only medication they have since it permanently damaged my eyes after being on it only 2 ½ years. At times the pain in my mouth feels like I have been chomping on shards of glass.
My acute anxiety and acute depression do not show any signs of being alleviated. My husband has found me sobbing in the shower, because I can’t wash my hair. Only a couple nights ago I was sobbing because I broke a glass container while putting my homegrown herbs in my bath. I also need help with clothes, buttons and zippers.
It takes me twice as long now to get ready to leave the house than it did 10 years ago. I try to do this by myself because it is too hard to surrender any more of my life being taken over. I try to wear clothes that I can manage to put on unassisted. I want to wear makeup, I want to put jewelry on and I want to fix my hair so I look presentable in public. All of this takes twice as long because I get distracted, I constantly drop the makeup or jewelry or hairbrush, and I can’t find what I dropped because I can’t see. I can't remember what color eye shadow in my eye shadow pallet I just put on one eye so my eye shadow might be different from that eye compared to the other.
I repeatedly ask my husband what day it is, and other like questions or I find myself unable to ask a simple question, or answer a question.
I bounce from wall to furniture every time I get up due to extremely poor balance and have continued to fall almost daily. Just getting up can cause pain and agony.
External changes in pressure and temperature worsen pain. The scleral lens I was fitted for to help vision as well as dryness in my eyes broke from being dropped multiple times from my inability to hold anything.
I rarely leave the house now because I realize that I am highly sensitive to energies from places and people. If I have to leave the house for doctor’s appointments or errands, I find that the next day I am wiped out and need to recover. I can’t travel by plane because my corneal abrasions are so bad from flying my eyes swell shut and I can’t open them because of excruciating pain and the abrasions are so bad I can’t see to read signs so I need a wheelchair.
There is probably more, but I can’t remember.