My Pain Story:
My pain story starts out with me as a child…… But wait….that’s a whole other story and a very different kind of pain.
I do want to share a small piece of what I’ve endured. I was hit with fists & belts while being weighed weekly . I was called horrible names (“Sooey”, “fat cow”, “Stupzanne” to name a few). I had been forced to take syrup of Ipecac (used to make sure that I didn’t gain any weight) & I was malnourished, Starved & anemic (according to the childhood medical records in my possession).
I was 11 yrs. old when my parents, older brother & I were robbed by 2 men at gunpoint and forced to lay face down on Floor of a shoe store! It was very traumatic, especially the part where my mom blamed me for the robbers taking her wedding rings! She said that I was crying too much & vomiting. She had to put her hands over my mouth (because they kept saying for someone to ” shut me up” or “they would”) and this is how they saw her wedding rings sparkle & why they took them. It was my fault (for being afraid)!
At age 17, I became fearful of food and was very thin. I was different than most people who get DX with “Anorexia”, because I didn’t really care about weight. My parents had instilled a fear of food in me! Since age 12 or 13, I hadn’t been allowed to eat at home in their presence, unless it was: a can of vegetarian vegetable soup, a hard boiled egg or a few bites of plain tuna! I got married just to get out of that house at age 20. The marriage was annulled after 10 weeks.
I went to Arizona to work at a school for the Deaf. I loved my job working with preschoolers as an Interpreter for the Hearing Impaired program . Doing speech & auditory training was rewarding as well. It gave me a chance to work with children and utilize My degree from Madonna University in Michigan! I came back home & remarried…I was married 8 yrs. & had 2 beautiful daughters! When the girls were 3 1/2 & 5 yrs., we left & went to a Domestic Violence shelter. I was Dx with “C-PTSD & Battered Woman’s Syndrome”. I worked full time & took care of my girls alone! Luckily I had a great job at U of M hospital as Interpreter & as a Secretarial “float”!… I worked full time and raised my 2 little girls without any help from anyone, except a handful of times & very little money ! I met my current husband (now married 19 ¾ yrs.) Craig. We fell I love & married when my girls were ages 9 & 11yrs old, in 1997.
He’s my “soul-mate”!
Later, in 1999, I went on SSDI for C-PTSD and chronic kidney failure stage II. I worked hard & was going to try to return to my job in September 2002. In August of that same year, a man ran a red light and my life changed forever! I was unconscious and was Dx with an MTBI or “Mild Traumatic Brain injury”! I had to go to brain injury rehab for 3 yrs. I was passing out constantly and while going thru 10 surgeries incl 2 screws in my shoulders and a pacemaker! I was referred to a wonderful Specialist for Dysautonomia /POTS/NCS & he Diagnosed me with that plus “Polyneuropathy in Collagen Vascular disease” (same as EDS VASCULAR) & Autonomic Neuropathy. I had already been diagnosed with Sick Sinus Syndrome, Prinzmetal Angina, Atrial Fibrillation, long QT syndrome, MVP & CAD.
I had a heart attack in 2005 and acquired Atrial fibrillation afterwards. I was put on blood thinners but still had a stroke (CVA) in 2006!! Then in 2007 I had a surgery in my right foot! The Dr. refused to take me off the blood thinners so she wrapped a BP cuff on my ankle for the entire surgery! Instead of a 45 min surgery , it was 2 1/2 hours (with a BP cuff around my ankle and no blood to my right foot!)!! Then 5 days later the Synovial joint sac, in that ankle burst! It was the worst “knife-like”pain ever!! Nothing anyone could do but wait!! I was in horrible pain and agony! At my post op check up after 6 weeks, I was Dx with RSD /CRPS! I was sent out into the world with what was in 2007 called “RSD- Reflex Sympathetic Dystrophy”. I was only given a medication, “Lyrica”. I wasn’t given any other information about this horribly painful disease! I knew nothing about “RSD/CRPS” and I’d never heard of it before!
I went to a foot/ankle specialist for a second opinion and he confirmed the Dx of CRPSII. It spread over time to both feet and knees. I went in for pacemaker replacement surgery in February 2013. I have a great Neurocardiologist/Dr. and he researched RSD/CRPS. He did an internal surgical wash with “Bipvucaine”to head off a spread of the CRPS. We had hoped it’d work but my CRPS instead spread to Full Body/Systemic! They call it “Severe Systemic CRPS Disseminated”. I also live with: Arnold Chiari Malformation I, & Degenerative Disc disease. Since the car accident, I’ve had chronic intractable pain because of my injuries which also include : multiple herniated, bulging discs in my neck & lower back w/Radiculopathy & I have “Combined Immune Deficiency disease”, an autoimmune illness.
I had a pain Dr. during the 1st 3 yrs after my car accident. I went thru all of the epidural nerve blocks, trigger point injections and more, including pain meds. The other injuries from the car accident included: 2 torn rotator cuffs, right long thoracic nerve damage with an 8″span of nerve damage, herniated & bulging discs at L-4/5 & S-1 with Radiculopathy & C-4/5/6. I couldn’t hold my head up, due to the discs, the whiplash & the fact that the previously “sleeping” Arnold Chiari Malformation had started giving me horrible symptoms! I had a torn meniscus, Chondromalacia patella and as I’ve mentioned, a Mild Traumatic Brain Injury. I have had a convergence insufficiency s/p the MVA with some double vision & a “halo”effect. I obtained 2 hearing aids because of the moderate hearing loss due to the TBI. I suffered multiple syncopal episodes and ended up with a dual chamber pacemaker.
I was taken by ambulance from my PT session because I fell off the exercise Bicycle. They’d strapped me onto the bike even though I told them I felt ill. I fainted and was found to have a Blood Pressure of 90/60 and my pulse was only 24! I was watched overnight and found to have Sick Sinus syndrome, Coronary spasms (Prinzmetal Angina) & Atrial Fibrillation. I have something called “Long QT syndrome”, which means the QT line on my EKG is longer than normal. The only symptom is that it can cause sudden cardiac death. The pacemaker was for the SSS, Dysautonomia & POTS. My old pain Dr. Wanted to give me an intrathecal pain pump. I didn’t want one & later found out that I wasn’t a candidate because of my Immune Deficiency Disease or “Combined Immune Deficiency Disease”. Therefore the pain doctor put me in the hands of my GP, to control my pain with pain medicine. But the pain management Dr. Said that he’d be there should any assistance be needed. My GP ended up giving me medication for pain. For 10 years I was overmedicated and had no idea! I found out that my doctor was leaving abruptly December 2014. He had been overmedicating patients and was forced to quit. He isn’t allowed to write prescriptions for pain medicine any longer!
The other doctors didn’t want anything to do with any of his patients. I promised the doctor that was in the same office, if he would take me on, I could do it! After being turned away by my old pain doctor because he didn’t want anything to do with any of that other doctors patients and almost being turned away by the other doctor I finally proved myself and went down at all my medications myself, slowly at first. I knew that I had already had a heart attack and a stroke and didn’t want to take any chances so I did it slowly. After a few months I had gotten myself down to the FDA guidelines amount of medication and I found a real pain doctor that was nice and he helped me. But in July this summer on the 12th I went to sleep with my last pain medication that I had been on for those 10 years !!! In the morning I had none. The new pain doctor had to let me go through horrible terrible withdrawals!! I was sick like the worst flu ever: chills, cramps, flu symptoms, worsening pain etc..everything!!! …..It was just horrible for at least six weeks. It’s a year on July 12,2016!
I have a new pain medication regimen. But this pain regimen is not quite the quality of life that I had before I was forced to change medications. I also have been diagnosed with Gastroparesis, Chronic Erosive Gastritis & SIBO, which is a chronic infection in the small intestine. Therefore, none of these are pleasant. They’re also painful and take a great toll on my quality of life. But it can always be worse! I’m very lucky to have found a pain Dr. who I respect and who also respects me.
Now I’m a grandmother of three, and I can only do something for a few hours. I’m in bed or my lazy boy chair for the rest of the day after that now. My new pain management Dr. said “I shouldn’t have been on the other pain meds” and it was only for “end-of-life” treatment. He also said I shouldn’t have been on it for so long(10 yrs.))! It did work better than what I’m taking now, but I’m really proud of myself. I woke up one day and stopped taking a very dangerous pain medication.
That’s the short version of my story!
#GarinsChallenge #USPain #Dancingthroughthepain