seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
As many of you know, I've struggled greatly walking any distances without winding and heavy legs. I can't walk a whole department store 90%+ of the time and a decent walk from a regular parking spot into the store uses up a lot of reserves. This started after I fell ill in Sep-07 and was forced to go on disability. I'm Dxed with Lyme, Babs, and Bart (maybe).
I went to my cardiologist today for results of stress test and echocardiogram. He said healthy as a horse. I broke down and begged him for a handicap sticker and told him my story a week ago about nearly collapsing in the store and EMS coming to help me.
He said he basically doesn't endorse handicap stickers for people my age (34) as I have no heart issues. He said I need to exercise harder and push through adversity as it becomes a vicious cycle. He said once someone's in a wheelchair, they rarely get out and doesn't want me that way. I asked him if my issues could be autonomic nervous system related and he said yes, but there's no cure. He said you just have to 'grow out of it.'
Nice huh? WTF? I am so demoralized. What's one to do when you don't have a Dx a regular doc believes in? I told him the thought of EMS picking my limp body off the store floor consistently is embarrassing. I mean the bottom line if for whatever reason: I CAN'T WALK DISTANCES PERIOD. I'm so far from lazy, it's sickening.
I love to do stuff, am overweight, but love exercising with a passion. I used to ride my bike 15-20 miles daily. Worked out consistently, etc. What a total bunch of BS. Docs leave you for dead!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I don't have any advice, just wanted to say how sorry I am that you had to go through that.
It is BS on so many levels.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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bettyg
Unregistered
posted
help,
do you have a FREE CLINIC anywhere near you that you could go to and ask for one?
they can see enough on the spot to sign the DOT's motor vehicle request for a HANDICAPPED PARKING PERMIT.
OR call your area DOT driver's license office and ask what specific people can sign this for you?
example, chiropractor, naturopath, dr., etc. good luck
you do NOT have any supporting drs?? how sad.
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posted
Seek, sorry you went through that. Your doc just doesn't get it. I agree with Betty, find one who will sign it. Call your DMV and ask what type doctors can sign off on it in your state.
Good suggestions from BettyG. Probably any doctor could sign for it. In my state naturopaths and chiropractors can request blood tests so surely they can sign for a handicapp sticker. Check with your DMV to see who can sign and start looking for more compassionate doc to help you.
It is hard to get help when you are still in the "but you don't look sick" stage. Went through years of that, especially when younger, so I can relate to what you are going through.
When you start to look sick they start getting more supportive, but then by then you are homebound/bedbound. Now, when I go in for a blood draw they are like omg get her in here so she can lay down before she falls down and hurts herself.
Do you have an LLMD who could sign for you?
Some docs just don't want to do the paperwork, especially not to initiate it. They have the forms, but don't want to mess with it.
Maybe get the DMV forms yourself. You can probably download them from your state DMV website. Fill it out in advance where all it needs is a signature.
Take it with you to every doctor appt. Then whip it out near the end of the appt. Not at the beginning. You want to time leverage it in your favor. Near the end they are running out of time and more likely to just sign it than take the time to explain why not. Eventually one of em will just sign it;)
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks for the info everyone. My docs don't believe I have Lyme, think it's a total BS disease, and people don't get disabled due to it.
If they can't 'see' sickness, you're not sick. I'll keep trying to get a temporary sticker if things keep up. I want to be able to function somewhat in life. It's hard to accept.
I agree about pure laziness when it comes to many docs. They prefer to do NOTHING they aren't forced to. Nice world, huh? Love thy patient - do the patient no harm - WORDS only.
I'll ask my LLMD if I don't get help beforehand. It's a few months until I see my LLMD still.
TO put things in perspective, my PCP who I seen for 8+ years wrote a disability letter on my behalf saying I have chronic fatigue, depression, fibro, and somatoform disorder. Lyme is not something the PCP entertains and insists my LLMD is a scoundrel.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Who cares if you doctors think lyme is BS? You know differently. If you are to proceed, you will have to let them go and proceed without them.
You don't necessarily need to fire them but you can stop hiring them except for simple, routine stuff or emergencies that are not related to lyme. Your body has become very unique and you need smart doctors with specific knowledge.
You are being treated by one of the best LLMDs in the country.
Why give up your power to the advice of a doctor who knows nothing about lyme, a doctor who will not listen to you and who offers such dangerous advice as:
" . . . to exercise harder and push through adversity." ?
--
Ask your LLMD about a handicapped parking sticker to help you through this time. Can you call and ask about mailing the form to him for his office manager to sign and return to you or send it to the appropriate office in your town?
And, better yet, as you've nearly collapsed in a store at least twice, it would be best to get a friend or hire someone to do these stressful errands.
You can then put your energies into resting - and also specific strengthening - that will not deplete you.
========
Although your LLMD should be able to explain your exhaustion to you- there are some links here that explain a lot - and much of it is not something that many cardiologists are aware of, unless they have patients with CFIDS or lyme/TBD.
Nothing here will convince that cardiologist to look deeper, but there in information here to help you know how to best take care of yourself and pushing harder with exercise is NOT part of lyme rehabilitation, clearly. In fact, that can cause damage.
Stop going to doctors who don't understand lyme or stealth infection. You will not get any help from them.
posted
Seek - if EMS came b/c you collapsed, a report must have been generated.
I wonder if you can get a copy of that report and use that to help get your sticker.
Definitely call the DMV and find the guidelines for getting a handicapped sticker - your state may even have the info posted on line if you "google it"
Don't give up - I'm sure you can find a Dr to help.
good luck
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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quote:Originally posted by seekhelp: TO put things in perspective, my PCP who I seen for 8+ years wrote a disability letter on my behalf saying I have chronic fatigue, depression, fibro, and somatoform disorder. Lyme is not something the PCP entertains and insists my LLMD is a scoundrel.
Could your PCP authorize a permit? If they were willing to write a disability letter, they ought to be willing to get you a permit...
I have a permit, my neurologist signed off on it. He doesn't believe in Lyme either...
i have a handicap card. i was reluctant to get it but it is needed. my llmd signed for it but any dr can, i think a chiropractor can too.
Posts: 262 | From nj | Registered: Dec 2007
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If that is on your record, some doctors will misunderstand and think you are exaggerating.
Also, many doctors have the experience of dealing with obviously handicapped people who refuse accommodations and parking permits.
Your symptoms are real, obviously. But a cardiologist would not be the one to give you a permit, because, according to his specialty, you are fine.
Go to an MD who understands your diagnoses and ask them. Also, do you have a walker or any other assistive device to help you? Or could you use a home health aide for shopping, who could drop you off and park the car? Just suggestions in case you continue to meet resistance on the permit. Or, hire a lawyer!
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I'm so sorry you had to go through this.
Oh, how I hate ignorant, arrogant doctors!!!
I really don't have any advice about getting a handicap permit, but I just had a suggestion about being inthe store.
Do the stores you shop at have those carts taht you can sit in and drive through the store?
I know that's not solving your problem, but it's at least a temporary solution so that you can still be able to go out.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Sorry Seek that you have such a crummy doc. My ability to walk a distance varies now, but back when I got the CFS diagnosis at age 19, I could not walk distance AT ALL! I remember just sitting in the car wondering if I could do it and with the brain fog, didn't know if I would get lost. It was truly overwhelming.
Not sure if this will help, but now when I'm feeling pretty bad and have to be in a store (my awesome hubby often goes now), I lean very heavily on the shopping cart when I walk. If I am out with my husband, I will go back out to the car and sit while he finishes, pays, ect.
I bet a doc would have told me that since I was 19, they wouldn't have given me one either, it's age discrimination really. I would try another doc if I were you.
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