posted
Hi all, I am looking for people who would like to write a brief essay (around 500 words, can be more or less) on what it's like to live a day with Lyme Disease for my website Planet Thrive.
Can be in the form of a daily schedule, journal entry, free flowing thoughts - whatever you want. The purpose is to describe how Lyme limits your life in a way that others who do not have Lyme can understand in a very palpable way.
Not just a description of symptoms, but a description of how the symptoms impact your daily living. Sort of like what you might write for a disability report.
The site is free but does require you become a free member in order to submit an essay. Please help spread awareness of Lyme and help others to understand how devastating this illness can be.
posted
Julie, I was going to send someone else a final email before logging off this early am, and came across this I submitted to someone else; is this what you are after?
If yes, I'll submit to your site as is!
July 12, 2004, I was correctly dx with late stage, CHRONIC lyme disease after being misdx for 34 yrs. after a case of mono, and the list goes on with 30 diagnosis/symptoms!
I tested with a blood test, WESTERN BLOT IGM & IGG, which needs to be tested for ALL 16 protein bands...all strains of lyme disease! In USA, only 3 diagnostic labs do this testing: IgeneX, MD, and Bowen Labs.
2004, I was diagnosed with: diabetes 2 in 1-04; chronic lyme disease 7-12-04; and sleep apnea (I stop breathing when sleeping) and restless leg syndrome 12-04.....3 life-threatening illnesses.
``You look perfectly healthy...not sick'' said one of my family members. Oh what they don't know and can NOT feel of the pain and fatigue inside me! If I were in a wheelchair, used crutches, a walker, or a cane. I would have a visible disability.
``It's all in her head''. Only those of you going through this know how much pain and anger you've caused us with your thoughtless comment on our ``invisible'' illnesses!
We don't want sympathy; we only want your support, compassion, and someone to talk to when our ``flare-ups'' are bad. I have been blessed with my supporter/ husband, Jack, and close friends.
I have had chronic fatigue syndrome, CFS, since age 21, Feb. 1970, after getting mononucleosis; and still have 34 years later. I was diagnosed with fibromyalgia syndrome, FMS , 11 years ago but have had at least 30 years. I then begin having many other symptoms:
A person has fibromyalgia if they have at least 11 of 18 specific tender point painful sites. I have all 18 of 18 tender points.
∙ My pain never goes away! I use a heating pad and/or frozen cold packs on my neck, shoulders, lower back, thigh, and knee helping to numb pain.
∙ Do you have any idea what it is like to go to bed night after night, year after year, and get up just as TIRED as when you went to bed? Plus I wake up frequently urinating 4-8 times.
I can't reach level 4 sleep healing our injuries and rejuvenating our systems. I have sound proofed our bedroom to eliminate noise from the neighbor's driveways, slamming of the car doors, racing engines, dogs barking, piano playing, and bouncing of all balls.
∙ I was clinically diagnosed with major depression and anxiety, and put on antidepressant that helped my chemical imbalance causing temper flare-ups, and causing me to gain 25 lbs, which caused my type 2 diabetes sooner.
∙ Difficulty concentrating or performing simple mental tasks. I now point at things since I can't think of words.
∙ abdominal pain, bloating, and alternating constipation/diarrhea (irritable bowel syndrome) as well as irritable bladder syndrome causing urinary urgency/frequency;
∙ super sensitivity to light (reflections/glare) and to sound (loud mufflers). Finally after 34 years, I have discovered it was my LYME disease causing extreme PAIN sensitivity to lights/glare/reflection and to sounds/noise!
I have seen 40-50 drs. to get a correct diagnosis!
SS Disability doesn't acknowledge LYME/FMS/CFS as work disabilities and fight to DENY each claim although our treating specialists all state, ``patient is unable to do substantial work now and in the foreseeable future''.
July 1, 2005, I was finally approved on my 2nd SSDI claim after 5 years of hell.
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