Saturday, August 14, 2010

Frustrating Fatigue!!

Well...my goal was to Blog everyday and document my Lyme symptoms! Well...they got in the way yesterday and I was not able to Blog!!  When you have Lyme you hear all the different ways one can be affected...it can affect every system in your body and everyone is affected differently! One of my symptoms which has caused me excruciating pain has been my eyes and spending time on the computer only makes the pain worse! How ironic...the time I spent setting up my blog, which I hope to use as an avenue to help bring awareness  to Lyme, kept me away from my  goal...and the short time I have been on today...I feel the pain already setting in! The only thing to do when the pain sets in is take a pain pill and close my eyes and hope a migraine does not set in! 
My eye pain is just one of many...and I mean many...symptoms I experience on a daily basis! Some may come and some may go but a day does not go by without one or all of them rearing their ugly head! The overwhelming fatigue never seems to want to take a break and is very frustrating! No matter how I feel I am continually taken down by the fatigue! I can not get enough sleep and walking up the stairs to my bedroom is by far one of the most exhausting feats of the day! I would take the Fodderstack Hill any day over the exhaustion I feel! And for those of you whom have run "The Hill"...you know what I am talking about! LOL 
Some people struggle with the arthritis Lyme brings. My knees, neck, ankles and believe it or not my knuckles have all been affected! The pain changes daily but never fully subsides! Getting out of bed can be the most painful until my joints loosen a bit...but I don't spend a lot of time out of bed due to the overwhelming exhaustion! A catch 22 and a no win situation for now! It is not my intention to sound so negative...I am trying to think positive! It is hard at times to not throw yourself a pity party when you know the road ahead to recovery is a long one and the only bumps in the road are the insurance companies and the CDC! Which is why I have taken it upon myself to document my journey with this disease...to document my symptoms, my doctor visits, the insurance companies and my treatments! To be honest no matter how glum it may sound! My goal is to bring awareness and help others who are suffering at the hands of Lyme Illiterate Doctors and may not be getting the treatment they so need! It is also my goal to follow in the footsteps of the State of Massachusetts and help pass a law not only in Virginia ( I guess one step at a time!) but in every state in this country and make it mandatory insurance companies not only acknowledge Lyme as the chronic illness it can be but to NEVER deny the patient the long term antibiotic treatment Chronic Lyme requires!  
I am now on my last week of my 4 week IV antibiotic treatment and my LLMD (Lyme Literate Doctor) would like my PICC-Line (peripheral intravenous Central Catheter-Line) to remain in another 4 weeks. My symptoms have subsided some but I am still very, very sick and new blood work not only shows Chronic Lyme but a new infection as well! Unfortunately, my doctor is not hopeful and is very concerned the insurance company will deny my long-term treatment! which is a reality! Whether my PICC remains in or not, I will be on a "Cocktail" of antibiotics for a minimum of 6 months! Lyme does NOT go away, one will NOT get better, so treatment is a MUST whether insurance covers it or not and can be very costly to the patient! I have yet had the courage to ask whether my insurance will cover my continued, long term treatment! I am far from better and have a very long road of recovery ahead of me and have been told I may never fully recover...and will live with the disease the rest of my life! How dare someone I have never met who spends their day sitting in cubicle have the right to tell me what is the best course of treatment! I am sure if it were their mother, sister, aunt, uncle...family member or dear friend, their perspective would be different! 
My Blogs will tell my stories of Living with Lyme, others and their stories of living with the illness. I may attach articles or suggest links...there will be no consistency! My goal is to hopefully gain a following, an on-line support group, and bring this insidious disease to the for-front! I want the medical profession, the CDC and the insurance companies to acknowledge not only us, the patients, but the debilitating disease as well. A disease which wreaks havoc on our bodies everyday! A disease which can literately take you down overnight. A disease which will forever change the life you once knew!



3 comments:

  1. Kathy I had no idea. I know nothing about Lyme disease and am so sorry you are dealing with it. it is so much more serious than I ever imagined and now I am curious to learn more. You are right about the insurance companies. Did you ever watch that Michael Moore movie "sicko"? It makes you so mad. I am sending you good thoughts my old friend.
    Dori

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  2. YYEEEAAA!! My first comment...thanks Dori! One of my goals of my blog is to help educate people so needless to say I am sooo excited you followed my Blog and learned a little something about the debilitating disease! It is a very serious illness and needs to be treated as such! More people are diagnosed with Lyme than HIV/AIDS but where is the treatment, education and acknowledgement...it is kept quiet because it could potentially cost the health care companies millions of dollars!
    But, thankfully slowly there is a group of us "lymies" standing up and taking a stance and hopefully our work will save others from what we go thru...and I feel lucky...there are some patients confined to wheelchairs and walkers and others with permanent neurological damage!
    Check out the ILADS website for more information on symptoms...we all need to be educated...Lyme is knows no boundries!
    Thanks Dori for readnig and for the good thoughts...I am feeling the love Old Friend!!

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