Hi all, my name is debbie b, i was dx with lyme in 7/13 after a cardiac arrest after a 3rd degree heart block causesy lyme carditis. I had a pacer placed and was treated with iv antibiotics for an extented period of time using a picc line.
I have never recovered my endurance or mental focus. I am at the point of applying for disability, i can't keep up with work, every am is terrible with stiffness abd pain. I am slow to heal from any wounds. I fractured my l arm 6 months after lyme treatment and still do not have full range of motion. I had a carpal tunnel repair in feb of this year abd can not write or type for an extended period of time without wrist abd shoulder pain.pain md thinks i may have a nerve disorder. I have also struggled with depression most of my life. I'm devastated at this point
Nursing has been my life for 33 yrs and i don't want to leave on a bad note. I just can't function.
I hope this does not come off as self pity but i'm struggling. And very fearful of appling for disability.
Any thoughts or some one with a similiar situation? I need advice
Thanks so much,
Debbie
I'm sorry I don't have any personal experience with the disability process with the condition as you have described it.. With endo-carditis, its almost impossible unless you have well documented efforts at participation at cardiac rehab. Even though the damage you describe is common with extended IV treatment (beyond 14 days,) one would think you would be recovered by now. Who is managing your treatment? More importantly who managed your lyme treatment? That will make the difference.
Sadly there is a very poor acceptance rate for disability when one has received lyme treatment outside of normal accepted practice and protocols. Were I you I would concentrate on the cardiac issues especially through the application process. Most review boards will look at radical Lyme treatment as practiced by some self proclaimed lyme experts as malpractice/self choice. You won't gain any sympathy. .
So how much Ischemia is there? Have you been treated with sympathomimetic agents or vagolytic agents. (Why or why not) Do you have a permanent pacemaker and/or ICD (why or why not) are all questions that need to be answered. You will also have to establish what the condition is at present. AV block caused by either infection or medication is rarely permanent and can be rehabbed in the eyes of SSDI. They consider a pretty large window of time BTW. Also contact your local vocational rehab program. You will need them on your side.
I don't mean to be harsh but a disability board looks at things differently than you may think. While you may not be able to do X, you will need to prove you can't do Y. The person who takes apps in my town is full on quad who taps out the apps with a soda straw in his teeth. They don't care how hard it is only if you have done every thing you can to do X persevered when it was "hard" and were willing to do Y. I was able to my job without a thought when I was thirty. at my 60+ age its dang near impossible, but that doesn't make me disabled......Just old
Good Luck, and we will be here for you as you recover.........
Welcome
Debbie I am also a nurse. Did you take out short and long term disability at work? I am of work on my long term disability and am awaiting my SS hearing.
Applying will take time. I suggest you look at getting a Disability Lawyer to help you.
I think there may be fear about many aspects of applying for disability. For me (back in 1992 for complex post traumatic stress disorder) it was a very large adjustment in my self-understanding and self-image.
And then there is the incredible power dynamics of you needing help, and being at the mercy (or not) of a system that holds a lot of power. From watching my sister go through it recently for a chronic heart condition, the standard is to deny the claim through all appeals until it goes up in front of a disability judge.
You are still you through it all.
I usually don't disclose this, but I am also an RN who is applying for disability. It has been coming for quite some time, so I have had a while to get used to the idea of not working anymore. I still get to help people from the comfort of my recliner by working with the Ben's Friends communities. I planned for potential disability by paying for both STD and LTD through work. This has helped a lot because I haven't had any gaps without incoming funds.
I have to agree that it sounds like you may not be getting the care that you need right now, and that can be a big factor when determining disability. It may be that you need a lighter schedule for while so that you can get a better handle on your health because everythign sounds a little out of control. It's not a good time to make any major decisions. When I have been at my worst points with my disease, I have taken some leave so that I can get my treatment team on board with a new plan of care. I've found new providers, new meds, whatever needed to happen to at least get me stable.
I am so very sorry that you are feeling so bad right now. Remember that it does get better, and that you will have to be your own best advocate to get the care that you need to function. I hope that things take a postitive turn for you soon. Until then, there is a whole group of people here who are ready to help support you. Wishing you better days ahead. :-)
IT IS DIFFICULT TO ACCEPT BEING DISABLED BUT I DID WORK 34 YEARS AND TOOK PRIDE IN MY PROFESSION. NURSING IS NOT A PLACE FOR BRAIN FOG AND MISTAKES. MY CO WORKERS HAVE NO CLUE WHAT I GO THRU BUT I'M SURE THEY KNOW I AM NOT MYSELF. WORKING WITH YOUNGER PEOPLE IS A WHOLE NEW WORLD TO ME. THANKS FOR YOUR SUPPORT AND HONESTY. NURSES CAN BE A DIFFERENT
BREED. HA, HA
THANKS!
DEBBIE B