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May 9, 2018 · Autoimmune Diseases and Fatigue in Autoimmune Diseases

Thank you all for your kind responses. Most of the suggested options and therapies are not familiar to me, however my memory is not very reliable, especially in the short term. If anyone would be so kind as to provide links for me directly I will attempt to save them for time when I have sufficient physical & emotional energies to delve into them. I am hindered by cataracts so I no longer drive confidently, spend much time on my computer, or do much of my beloved reading as all becomes blurry and headaches ensue if I push it.
I took meditation in the 80's and some sort of ‘stress/heart rate reduction mind control’ therapy thing, but couldn't continue as my neurons were firing so often I couldn't hear myself think when I tried. I do recall I wore a headpiece and they were quite impressed I could raise & lower the sound tones and the light flashing speeds. I never understood what the benefit was and blood pressure didn't become such a concern for me until about 2000.
My high school and college writing teachers did give favorable marks for my writing. One remarked on a submission that I had the ‘Great American Novel’ inside me. I have no training per se. I had little to no friends until becoming a hippie, so I had a book in my hand constantly reading everything I could find of interest to me. I considered it my 'escapism' from reality to fall into 'Middle Earth, Deep Space, Science and History.' I have more trivia knowledge than common sense, can’t find where I parked my car or if I took the bus.
The major life experiences I've described are ingrained because I have told & re-told them to professionals so many times – to little avail.
More's the pity because last fall when faced with a health crisis, in a moment of rare clarity, I vowed to write my life story for several reasons:
One being that my wife, as a past Historical Cemetery Board Member and as her family were city fathers of Kansas City, we are honored to have allotted space at historical Union Cemetery. Because of their family plot, they ask when interned, we provide our life's story to their members of the Historical Society – for Posterity.
There are several historical figures buried there including a Revolutionary Soldier, many Union & Confederate Soldiers, Chinese Railway Laborers and just about everyone who has Kansas, Kansas City, Missouri notoriety, a neighborhood, boulevard or park named after them.
Her family once owned the land that became Westport, where the Oregon, Sante Fe, and California trails were outfitted, contracted guides and provisioned by her industrious ancestors. Years back it was discovered they provisioned the infamous 'Donner Party', were the first to attempt salvage of the sunken Steamboat Arabia, and owned the popular landmark, the Westport Inn after the Boone family, but before Irishman Randal Kelly made it famous. But I digress.
The second reason I want my life recorded is so my descendants will know me and how much I cared for their world which they would inherit. I know my lineage back to an Andrew Reed of 1792 Kentucky and would give anything to know of his life and whether he immigrated from Scotland, Ireland or England. My own children do not seem interested in history much like my prior generation, much to my distress. I feel I failed them all in many ways. What amends can I make?
I was born before any satellites entered orbit. I saw the Beatles. I protested the Vietnam war tearing up and returning my draft card with declaration as a conscientious objector who would not report when ordered. I donated my time in lieu of money to innumerable causes, xmas for the poor charities, for disease cures, children’s charities, etc. I witnessed the post MLK assassination riots. I tried to educate my kids to be ecologically and socially responsible for their planet and fellow man lest their grandchildren be faced with strife, if not extinction from famine, political upheaval, or unpreparedness for natural disasters, etc. I witnessed so much of history.
Like Philip K. Dick’s replicant, I mourn; All those moments will be lost in time, like tears in rain. Time to die.’

May 8, 2018 · Autoimmune Diseases and Fatigue in Autoimmune Diseases

May 8th, 2018

Thank you for your information. Hopefully it will bear fruit so my life will have a chance of improvement.
@donno, what symptoms did you have that led to the retro-peritoneal fibrosis diagnosis?

-Kidney failure, liver failure, high blood pressure, painful urination, scrotum swollen 3-4 times regular size, chronic flank & groin pain, pale yellow skin & eyes, dehydration, vomiting, high fever, delirious, migraine, high white cell count, severe anemia, high kreatin (sp?) levels, exacerbated symptoms from previous diseases and injuries (among other mental & physical insults**). I went to my closest large Medical Center and repeatedly told "Go home, you have a urinary tract infection," and treated me as if I was only there for the narcotics.

Did you have to get a MRI or a biopsy?

-I cannot take an MRI due to my pacemaker. I had several TIAs, (mini-strokes), and a heart attack brought on by improper meds, (no longer on market), stress, arrhythmia, anemia, swollen heart sack, and other childhood anomalies**. I have had 15-18 CAT scans in the last 18 months and I don't how how many in the last 10-20 years. Mother & Father died of cancer, sister of diabetes.

-(**) – Born in 1956, I am a child abuse survivor; In infancy, I was smothered to unconsciousness, allergic to nearly EVERYTHING, chronically banged my head to sleep, insomnia, asthma, both my older sister & I were physically/emotionally tortured, had un-diagnosed ADHD, memory lapses, night terrors, bed-wetting, chronic fatigue, un-diagnosed pneumonia, risked exposure by running away from home a dozen times, set neighbors house aflame, killed and abused small animals, endured other bodily infections untreated, chronic stomach pain with acid re-flux, (ulcers), a couple of attempts at suicide by drinking toxins, all before becoming ten.

-Age ten to 18 I drank almost daily and smoked 1.5-2 packs of cigarettes a day. I stole, ran away, skipped school barely passing despite teachers saying I was intelligent, articulate, but unable to focus, lacking concentration -(deemed 'acting up'). Beaten up daily by class bullies for being too weak and too smart . In my teen age years I was inhaling toxins like airplane glue, spray paint cans, de-greasing solvents until drugs came around. I used and abused all but drew my line at cocaine, heroin or anything by needle. I have never suffered from any addictions thankfully. I gave all this up when my mother who had various cancers throughout my life, died at 48 leaving me totally alone at 18. I grew up and worked at 3-4 jobs abstaining from all evils for years until illness caused several major surgeries, (perforated ulcer, repair, vagotomy, and hietal hernia).

-I consider it a miracle to not have evolved into a serial killer or sexual deviant. My 140 IQ got me almost through 2 years of college, (illness & finances forced me to quit), and completed a trade school. Currently happily married 12+ with 5 kids between us and ten loving grandchildren I would do anythinbg for.

-I suffered from depression my entire life thinking my family was right, I believed I WAS evil, stupid, ugly, lazy and worthless. The stress the surgeries and subsequent financial ruin put on me finally made me snap. Nervous breakdown – twice. I went in-patient and was given electro-shock therapy, (1st time without my consent****), and then zombie-fied for years on mind numbing medications believing Psychiatrists know what they're doing.

**** multiple sessions of shock treatment caused more severe memory lapses, more poor decision making and concentration difficulty. When my wife picked me up I asked, "Whose kids are you babysitting?" In tears, she croaked, "Yours."

– A biopsy would be too little too late. I was quickly advised to 'get my affairs in order'. I didn't expect to wake up from the radical surgery removing dead organs and wrapping some of the remaining dying ones with tissue from elsewhere supposedly non-adhering to scar tissue. I lived 2 years with hoses protruding from my rear flanks to bags strapped to my legs, and 8 years of immune-suppression medications that rose from $24 to almost $900 a month.

Are you taking any medications while you wait to be seen at Mayo Clinic?

-I take 19 prescription and 14 supplements daily.
– I have volunteered what little
energies I have gaining signatures for New Approach Missouri trying to
get Medical Medical on the November ballot. I believe that had I had access to those products I would have suffered much less from PTSD, stress, avoided medications and botched spinal surgeries saving me years of quality life, untold money and the affections of my family who, in our ignorance, didn't understand what was wrong with me. Doctors and illnesses have taken everything from me. I'm too old to get excited enough to mentally snap, but early dementia has been mentioned, so there's that.

-My immediate problem is that scar tissue has caused a narrowing of my small intestine. Plaque or some food residue builds up and frequently, completely blocks my bowels. The pain is horrific and nothing ANYONE can do will prevent it. All dietary restraints and supplements have failed. All they can do is put me on IV, control the pain and give me time to reboot my intestinal system.

-I have returned to the hospital at least every 4-5 months and lately as frequently as 36 hours. They don't know what to do with me at Kansas University Medical Center. They don't dare risk a surgery without incurring the wrath of RPF on my 1.5 kidneys and other over-stressed organs. I can't relive the horrors of last 8 years again, and I won't do that to myself or my loved ones. We are essentially financially ruined. I would rather 'Kavorkian' myself out than live through another hell like that. I can't bear the burden this has put on my body, my mind and my family.

DonnO

—– Forwarded Message —–

May 8, 2018 · Autoimmune Diseases and Fatigue in Autoimmune Diseases

I have been diagnosed with chronic fatigue immune dysfunction, post-concussive syndrome, Post-traumatic stress disorder and now retro-peritoneal fibrosis. Dr.'s are afraid of me due to my complications. I am being referred to the Rochester Clinic by my primary care physician and Motility specialist. I have made and lost fortunes on Doctor's and prescription medications. I am Disabled and nearly btoke .I have MediCare and a MediGap supplemental. I am told to call twice weekly for an appointment until one becomes available. I'm confused (easily). How do these work? I haven't traveled much and unsure of circumstances.. How do I arrange transportation and housing (assuming I'm not a full time in-patient for the duration).