Katina shares Hello all I am new to this group and new to diagnosis of fibromyalgia and chronic fatigue syndrome ... hope you all dont mind if I whine a bit and tell my story ... I just need to get it out to people who understand very badly .Im grieving a lot right now and just need to get this out of my system . So here it goes . In 2008 I was diagnosed with lyme disease after after a 3 year search for answers to my relentless pain ... I was told I was depressed ... needed to join an exercize program etc..... finally I found a dr to listen and I was positive for lyme disease ... I then remembered being bitten by a tick and having a bulls eye rash about a month before my symptoms began ... I was a busy nursing student ( finally a nurse ) when I finally got treatment . Also a single mom with 2 beautifl little girls.. well I was treated for the lyme along with several co infections for years on antibiotics ...and trust me that was no picnic ... it seemed that I finally beat it and went for almost a year with no pain or issues ... in 2011 the pain came back with avengence and then I was In a terrible car accident that I can not believe I walked away from . I did end uo with wiplash syndrome and a herniated disk In my neck but kept chugging along so I could build a good life for my girls... I have a great pain management doctor but the pain meds were just not helping with the pain / stiffness In my neck so in may I took the plunge and had cervical spine steroid injections to try to get rid of the issue ... about a week after the injections which really did help the neck I started having extreme fatigue .... so bad that I just could not stay awake . I either laid down or fell asleep sitting up ... I had taken a promotion because I just didnt have the strength to care for patients In the field any longer to a home position doing quality assurance ... I would get a good nights sleep and get up and start working about 9am every day and by 11 am I was done... I would say to myself I just need to lay down for few minutes and bam I was out like a light for hours and would wake up in tears so frustrated with myself and then resume working to try and meet my productivity of ten charts a day . This went on for a few months untill I could no longer take it ... I went to see my doctor who is an infectious disease specialist and had every scan and blood test known to man ... some so rare I could not even find info on the internet about them ... finally and reluctantly he diagnosed me with chronic fatigue syndrome and fibromyalgia .... at this point even a 45 minute walk would put me out ( sleeping ) for 24 to 48 hours at a time... keep In mind that while being treated for the lyme and everything in between I worked my butt off to make sure my girls wers well taken care of. I only had me to depend on so their was no choice. I finally made the decision that I could no longer work ... how do u work when u cant stay awake ? My doctor has put me on disability indefinitely about 2 months ago and I am so lucky that I work for a company who cared enough to pay for group disability insurance ... but now I am having a huge battle with them to get them to continue to pay ... they want OBJECTIVE evidence to support my illness . Well as you all know there is no OBJEctive evidence to support these diseases ... its all subjective ... my dr finally got pissed at them when he filled out the last paperwork I picked uo today and wrote on the for ... ? How does one provide objective information for diseases that have only subject evidence ! Lol he cracks me up ... well anyway the whole point is I am grieving so bad right now as if I just lost a loved one... I worked so hard for my children and to build a career as an RN to be left with these hopeless diagnoses . i dont think I will ever be able to work a job again unless one day I wake up and this nightmare is over ... but I dont see that happening. .. i feel like a loser and a giver upper .... like Im letting my family and especially my husband down ... there is no way to support this household without 2 incomes. Disability has been paying my short term disabily reluctantly but it is no where near what I am use to making as an rn ... long term will pay 60% of my previously salery untill age 65 which we can make it on but I know Im going to have to fight for my life to make them pay .... this is so devistating to me ... I cry every day not only because of the extreme fatigue and pain but for the loss of my livleyhood and independence ... when one is so use to always being the main bread winner and depending only on thereself for survival how on earth do I let go and and learn that I will now probably have to depend on others for my survival likely for the rest of my life ? I am heartbroken . I only have 1 child living at home now she is 13 and beautiful and talented .. miraculously she seems to understand better than anyone ... I get lots of gentle loving from her and its sad but she knows how not to hurt here mama ... and will ask mom if your awake tomorrow can u drive me here ? thank you so much for allowing me to vent ... I think my husband is now understanding but I feel horrible their is so much burden on him and I know that he is having a hard time coping as well ... I am searching for a physical support group In my area so I/we can be around others with these same invisible illnesses .... to learn how to cope.... thanks agai. That feels much better ... gentle hugs to all .....
Posted on: Thu, 07 Nov 2013 07:12:01 +0000
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