I will try to keep short and sum up.. (if not allowed I'm sorry and please remove)...I'm just so stressed and don't know where to turn for answers
I have been on disability for several years (got approved 1st time). I was late returning the form for continue of coverage (I was very sick in Nov to fill out) and finally got it to them late. They even had my mother fill out a LONG detailed questionnaire (she is 86 and was hard for her) but she was honest and went in to detail with the daily struggles I endure.
I still work part time (can only work 2-3 days a week) and its getting harder and harder and was thinking I may have to give up working all together but the disability only pays my mortgage..NO extra $$ left over.
They now say them need me to go to one of their "appointed Dr's for a "physical" next Tues. I have Lyme, Bartonella and Babasia...
I am in so much pain, days I can barely function..my quality of life is not near what it use to be. (but I look "normal"). I have worked since I was 16 and hated going on disability (I'm now 56) but I am afraid I will lose it now. If so, I KNOW I CAN NOT physically work full time again and also I WILL lose my house I've been in for over 18 years.
I have also continued to work part time because I refused to let this disease rob me of my entire life...atleast as long as I could but it is truly getting much harder (ps I am a very hard and dedicated worker..been at the same job for 15 1/2 years).
*** I guess my question is does anyone know what I should expect and/or any pointers? ***
I know most mainstream Dr's don't really even acknowledge chronic Lyme
I do see an LLMD in Maryland (but not as often as I should...just can't afford it) and my GP kinda goes along with what my LLMD says... but he doesn't really "get" the whole Lyme thing.
I actually found TWO ticks in my scalp Tues and have an appt with my LLMD tomorrow. I had gotten one off me last week also and now my symptoms are beginning to intensify (body aches, ringing in ears, leg and muscles sore, severe fatigue, joint pain, memory, brain fog, and blurred vision etc etc etc)
Like so many of us I am living a nightmare. Also I am afraid if I go in and tell "their" doctors all my TRUE symptoms he'll think I'm either faking or crazy..ughh
Of course my stress level over all of this is off the charts now as well.
Thank you all for any advice and please feel free to pm if you wish.
May I also add my strong faith is the only thing that has kept me going all these years dealing with this.
God Bless Also prayers greatly appreciated Thank you so much
Posted by Lymetoo (Member # 743) on :
Wow, Karen. That sounds terrible! Maybe you'll get lucky and end up with a reasonable doctor.
Can you take a letter from your LLMD or PCP to the doctor's appointment also? Or send in a letter?
Be sure to take pics of any rashes that might show up from the recent tick bite. UGH.. horrible to even think about.
Will be praying for a good outcome with this.
Posted by Keebler (Member # 12673) on :
- Just do the best you can to take care of your needs this minute, this day, tonight. Eat good food, rest as you can.
Be honest. And stand tall inside yourself but put yourself in whatever position you need as you do that -- I can't verbalize what I mean..
Do not be concerned with what they may think. Just be truly honest.
Rather than diagnoses, though, focus on what you can or cannot do and factors involved in endurance.
If pain, tell them. Tell them what it takes to manage that - and recovery time.
if you can think sometimes but not others, just be as honest with how that works / does not as you can verbailiz.
If dizziness, nausea etc. are factors say so (and if dizziness or vertigo are factors, you should ask to see a neurotologist, an ear specialist trained in neuro issues).
TEll them how you take care of yourself if you mind your diet, etc. And how much effort it takes just to function as you do.
Always come back to honesty. Show them the real picture.
If endurance is a problem, ask for adrenal evaluation - but do not do a "challenge" test where they inject any kind of hormones / steroids.
Be yourself - exactly as you are in your body.
Feel okay if anxiety or mood issues are part the deal. Just be honest and look at them as symptoms of your body, not your character.
If asked questions that are A / B answers and if they do not fit, do not check A or B. Explain in full. And if you must lie down to talk to them, do so. Take a healthy snack, etc. Someone to drive you if you can.
Make no apologies nor feel like less than a person of good character.
Your LLMD tomorrow may be able to offer an additional letter / form. -
Posted by Rumigirl (Member # 15091) on :
Oh, how terrible!
If I were you, I'd contact a Disability lawyer for a quick, hopefully free, consult, and get their preliminary input. Ask for a referral from a local Lyme (or similar) support group, if possible.
What Keebler said is good. I know that the key thing that disability looks at is NOT diagnoses, but what you can't do.
I would make a list to bring in of what you can't do. another list of what is very difficult to do, and specify how it's difficult, how much time simple things take, the toll it takes on you.
Make a list of your symptoms and their severity and frequency. Make a list of what others have to do for you (maybe the same as what you can't do.
Give the doctors your lists. don't try to make them perfect in terms of typo's, etc.
When you go, don't try to look especially good. I always make that mistake when I go to doctors. so they don't realize that how I am in their office isn't a reflection of how I normally am.
Maybe you don't need to consult a disabiltiy lawyer yet, but it surely wouldn't hurt, if you can ask a few questions without paying yet.
Good luck! Let us know how it works out (knowing you may not know right away).
Posted by Lymetoo (Member # 743) on :
Good info!
Posted by TF (Member # 14183) on :
This is just a routine exam to make sure that your condition has not improved to the point where you should no longer get benefits.
So, the doc will focus on the illness/symptoms that got you the benefits to begin with. Do you still have these symptoms? have they improved?
It is good to take a few notes to help you remember things.
I know it is stressful so just know that it is routine to do these continuing disability reviews since some people have conditions that improve. So, the Government has to make sure you are still sick. That is all the doctor has to verify.
So, talk about your pain and lack of energy and whatever caused you to get approved for disability in the beginning. Tell the doc that things have not improved, etc.
You should be fine. You probably will have to undergo this about every 5 years. That is the rule for people with conditions that can possibly get better.
Posted by Tincup (Member # 5829) on :
1. Don't focus on Lyme, just the bunches of symptoms and ONLY if you are asked.
2. Be nice.
3. Understand right now that no matter what you do or say to help yourself won't matter. They don't really care. This is a job to them, so unstressed yourself now.
Here are some youtube videos- short- and a few articles on the "Help For You" page. Just skip past the insurance related links and see the disability exam or review links.
Being 56 is your greatest strong point. 55 to 62 you are concidered advanced age and it really helps keeping SS.
The process in in reverce (they) now have to prove you can work.
I will soon go through the same thing I guess.
I will be 61 in July so by the time all the hearing were done, if necessary. I will be 62 anyway.
MADDOG
Posted by Karen Mc (Member # 23354) on :
I just wanted to update and let everyone know ..thank you for the prayers. I went to the Dr they (SS) chose and had my "physical" done for continuing coverage....
I was honest and straight forward...The Dr was an older gentleman who seemed very nice and caring...yet professional & non-biased either way.
I went in knowing I could just do the best I could and apparently the Dr saw the truth...as I received my letter from SS saying my coverage would continue.
Thank you Lord and thank you all who gave advice and prayed. Posted by Keebler (Member # 12673) on :
- Karen,
Thanks for sharing the great relief news. It's nice to have confirmation that just presenting yourself as you are and telling it like it is matters most.
No one wants to be in this position and due to what it is, it can be very demoralizing. Glad to see some of the basic support will still be there as you move forward - or zig-zag through this maze. -
Posted by TF (Member # 14183) on :
Good. That is how it should be. So happy to hear the process worked as it should!!!
And, so glad for you.
Thanks for letting us know how it turned out. This post will help many other lyme patients.
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