Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Today is my fourth day this year out of the office and I only get 6 PTO days for the year (plus two weeks vacation).
I have been holding down a full time job through my entire battle with Lyme Disease, but the last year has been the worst. I believe it is the herxing that is taking so much out of me. Thank God my cognitive ability is intact.
As I walk with a walker every step is like climbing a mountain; the smallest task involving physical movement is Herculean. Since my office is not ADA compliant, someone helps me navigate the stairs in and out of the office.
At this point my right knee is usually painful (90% of the time), then there are the spasms in my right thigh and the weakness of the left leg (because of CNS involvement I suspect). I drive myself to and from work. It's 19 miles each way. By the time I reach the end of my trip I am in agony. Sometimes my feet just won't work on the pedals, usually if I'm nervous or someone is tailgating me!
I am so wiped out I can't even think straight about my health. There was a time when I wasn't like this, but pain and disability has taken away who I was.
If anyone has any advice, I would appreciate it if you would share with me. I am really at the end of my rope.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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bettyg
Unregistered
posted
Monica,
That's how it was with me too! I worked 30 yrs. 6 months until I left/QUIT 12-98 due to health reasons. My only sister, 40, was dying of advanced breast cancer to the liver, and I knew I couldn't go thru ANOTHER family death...had 8 in 12 yrs.
So I left, and then filed for SS disability insurance benefits; took 5 years of hell to win; but I finally did 7-05.
You can read info galore on MINOUCAT'S disability link post or from TREEPATROL'S NEWBIE LINKS...look for Minoucat disability info there.
You need drs. letters supporting you now that you NO LONGER can do "sustaining" work...fulltime!
Things helping you WIN your SSDI are:
MENTAL FUNCTION CAPACITY, MFC, completed by a psychiatrist determining what type of MENTAL illness you have. We get severe depression & it escalates.
RESIDEUAL FUNCTION CAPACITY, RFC, compleed by your PCP and/or rheumatoligst; I had both complete.
What these are; they state how long drs. think you can: stand, sit, bending, crawling, lifting, climbing, using your hands, etc. in an 8 hr. day.
To file for SSDI, please see the DISINISSUES website found in Minoucat's info from me. By doing what the female dr. suggestions, you can win on 1st step on 1st claim! Good luck.
Does your employer have employee assistance counseling? If yes, sign up; ours was free...3 sessions PER problem.
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Iam with on the burned out to.
Maybe we should start a club
Nahhhhhhhhhh to much work
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
Monica,
i am so sorry to hear of your struggles. feeling at the end of your rope IS a mental disability - it's part of depression and anxiety brought on by the lyme and by living with lyme as well.
the problem with stress the way you are experiencing it, is that it robs your body of the strength it needs to fight the lyme. so, even though you are taking the meds and doing all kinds of good stuff to heal from lyme, you are putting yourself through way too much stress to truly benefit from your tx.
i am not a doctor (duh) but i do know a lot about stress because of ptsd i've had forever. cannot be in ongoing stressful situations without it knocking me out physically, as well as mentally.
hope you get what you need from the board. it's good to be fed up because sometimes that's the only thing which will get us to change.
hope this helps a bit
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Thanks for all your words of wisdom and comfort. I did see minou's list and I e-mailed it to my daughter (she will graduate from law school in May).
Very hard to decide to go for disability. I think I have been defining myself by my work, and I do enjoy working (but not the traveling).
I acknowledged today how very depressed I am. (I am on Effexor.) Hard to believe I will ever get my life back.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
For those of you who are on disability:
How did you survive financially while waiting for approval?
What did you do about health insurance?
What do you have for health insurance now?
Thank you!
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hey monica,
it was really tough. i ended up qualifying for medicaid (insurance) although not for any other assistance from them.
i had to borrow from family. not pretty.
after approval, you need to wait a year before you receive medicare. then you have social securtiy disability benefits (whatever that amount would be) plus your medicare insurance.
then if your health improves, you can attempt to work at test period, without loosing benefits. if you can work, then you become working disabled with medicare health insurance benefits.
i'll p.m., if that's okay.
best, hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Monica, I too used to identify myself with my career. I've been disabled 4 yrs now. It is not where I want to be, it's just the way it is.
I worked the first 2 1/2 yrs of this illness. I struggled mentally and physically. I pushed and pushed until one day, there was no pushing. I was a broken woman after finally reaching my career goal position after 28 years with corp America.
I lost it. But I had to leave my dream to heal. I finally realized that my health was more important than a career. I realized there's more to me than who I was at work. I'm starting to have periods of remission and now I dream about my next career. But I'm going to be patient and heal first.
I'm considering doing something part-time now. I've even applied for some charity work at a place called Home of the Innocents. It's a place for children from birth to 18 who have been abused, deserted or are physically handicapped so bad that their families can't take care of them.
In my gut, I feel my next career will involve children. Lord willing. Please take care of you. You shouldn't be driving to work with your problems you described.
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey Monica,
Im sorry you are feeling at the end of your rope.
Just remember your career does not define you. i give you all the credit in the world for driving to work and working. Not only working but in a place with no elevators/ramps...or handicap bathrooms!!!
Does your company offer short term disability? maybe you could do that first.
The traveling was what wore me out too....i couldnt drive to work....and walking around at work took a huge toll on me. I tried working from home and company just denied that and put me back on disability. Its not pretty and im sure i will be termed next.
The herxing is what wears us out, and we are so hard on ourselves. We want to be well, we want to be normal but we have a chronic illness and for now are only job is to heal.
I hope you can get disability thru your employer and if not look into SSI. I really think you belong at home resting and getting better.
Its not easy giving up the life we used to know because, well gosh the life we know now its a bitter pill to swallow.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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