I Am Scared

[cutiepie50]

HI, I have had POTS for 12 yrs. I got SSD and SSI 8 yrs ago. I moved from WI to FL 3 years ago and now the government is calling me in for physical and mental tests to see if I am disabled. I have not had a good POTS doctor here in FL. no real specialist in the field like I had in WI and my pots doc thinks I can work.BUT I cant. I was a cabinet maker with my x-husband. then I got pots. Now I am in bed all the time. I can not stand or sit for long period of times. I forget alot. I can't even be on the computer long or I get potsy.

I do not know how to describe what pots feels like.Can anyone help me describe it?

What can I do? I am so afraid. SSI and SSD is my only source of living.

[roxie]

HI Heidi!! I had to have an examination before I was approved for SSI as well. Just like you I was very afraid, I didn't think they would belive me either, so I took down my meds for about a week before and like didn't wear my stocking the day they watned to test me. That sounds bad but they need to see the natural state.

Anyways I describd the reality of what I could and couldn't do honestly. And my bp was so grainy and heart was so fast, it scared them and wanted to take me to the ER.AFter my mom insisting that it was normal for me and I ddint' need to go they moved on with the exam

A few weeks later I was approved. I hope this helps, the best I can tell you is to just be honest about how little you can do and the symptoms you feel

Good luck

Madeline

[flop]

The best way of describing your symptoms is to make a list of everything that you do / would normally do in a day.

Start with what happens when you wake up, how you feel when you walk to the bathroom, if you can get washed and dressed yourself and how long that takes you, making and eating breakfast, then other chores like doing the laundry and ironing, shopping, cooking.

Tell them typically how far you can walk, what symptoms make you have to stop (tachy, dizzy, palpitations, pain, shortness of breath)

How long you can stand up for, how long you can sit in an upright chair for, how long you can read for.

This will let them see what your life is like without you needing to write an essay, keep it to objective facts that you can measure (like time, heart rate, bloodpressure, distance etc) rather than subjective statements (such as ...makes me feel awful). If you struggle to do activities of daily living then they should understand that going to work would be even harder for you.

At the end of the day they are trying to make sure that people don't cheat the system. People may get better but not tell the benefits office and continue to claim disability. What they want to do is ensure that disability money goes to people who need it.

Best wishes, and try not to stress too much about the assessments as that will probably make you feel even more ill!

Flop

[roxie]

YES!!! Flop thats a great idea and now that you say it, I did that with my mom before my test too!!! I just forgot that I did that, lol. Heidi I am forgetdful also

Madeline

[flop]

The system in the UK is quite different - we have 2 different benefits. Disability living allowance whch you can apply for no matter how wealthy you are and whether or not you work. It has a care part and a mobility part and is designed to pay for the things that your disability stopps you from doing - like paying a carer to help you get showered and dressed, more expensive travel costs etc.

The other benefit is incapacity benefit - this is for people who can't work because of a medical problem and is more money per week that the disability living allowance. If you get full disability living allowance you are usually eligable for incapacity benefit.

I have just applied for the disability living allowance (even though I am currently working 40 hours a week) as my sister has had to move to in with me in order to look after me. The forms were very specific questions like the ones I suggested in my previous post so that they have clear rule on who qualifies and who doesn't. I'm still waiting for a decision as my GP has said that I function very well and am able to work full time - I don't complain about my POTS symptoms to him as I know he will just tell me to wait until I see my cardiologist, so all he looks after is my allergies, repeat prescriptions and acute illnesses. He probably doesn't realise that I am totally supernummerary at work (they have employed someone else to do most of my work) and that I am working much fewer hours than my collegues who are healthy - my contract is only until the end of July so I may well be not working then anyway. It will be difficult to get another employer to agree to take me on with my limitations even though I know that I am really good at my job (well the bits that don't involve standing up anyway).

They have now written to my cardiologist for his opinion. He is good at testing for my palpitations and syncope but thinks that the functional symptoms are not related - he doesn't realise how disabling POTS can be. I don't know what sort of report he will give them.

Fingers crossed huh?

Flop

[Rachel]

Hello Heidi,

I haven't been through the process of going to a doctor for an evaluation for SSDI, so I can't offer any advice from experience. But here is a previous topic I think you will find very helpful: http://dinet.ipbhost.com/index.php?showtop...;hl=disinissues The topic talks about how to explain what you can/cannot due because of your disability. There is also a link in that topic to the Disinissues site (Disbility Insurance Issues). It is an online group you can join to ask for and give advice about the whole disibility process. I highly recommend this. I think you'll be able to get some good answers and advice there.

I hope that all goes well for you. I'll pray that the doctors you are assigned to are helpful, understanding, and realize the extent of your disability.

You mentioned you are in Florida. I've heard of a doctor in Florida who treats POTS (and actually has POTS too). I think his daughter also has POTS. I've heard that he is a good doctor. I'm not sure if he is close to you or not, but I'll see if I can find the info for you.

Rachel

[Rachel]

P.S. Heidi, I sent you a personal message with some information.

[Sushi]

Heidi,

There is a specialist (only treats autonomic dysfunction) In Pensacola. I see him and he is great. He also has POTS, so totally understands. He also understands people's need for disability. If you want more info, just ask me.

Best wishes

[cutiepie50]

I ALREADY HAVE SSD &SSI. This is just a reexam.

The scarry part is I have horrible POTS doctors here now.And one said he wasnt sure if I could work or not. Well. I know I can't!

I live in Jacksonville.FL and Penn. is too far.

The first time I tried for SSI and SSD I was refussed and my lawyer got it for me.

It is hard not to worry about this. How can a doctor for SSI tell if I have pots anyways? Really!!!

My blood pressure can seem normal while sitting sometimes,but it can drop or go high for unknown reasons.

Also,my health has deteriorated since I first got pots. I also have COPD and CHF. And Obese now too.

I really appreciate all the support thank you everyone!

[corina]

heidi,

welcome around!

when i had to be rechecked for ssdi (which was a new rule in my country a few years ago), i had been working at my medical file for about a month. i wrote everything down, like what dysautonomia is, what meds i use, what i can and can't do and more. i also use my medical file to hand to doctors (like my gyn) as always when i tell a new doc that i have pots/dysautonomia they have never heard of it. until now, they always appreciated to read the file. a lot of information i got from this site (which was VERY handy as i forget a lot also ).

hope this helps a bit. take care,

corina

[becky]

hi heidi,

i'm not sure what the system is like over there but here it's just like flop said. i have received both incapacity benefit and disability living allowance both before i was diagnosed and after. we have checks normally once a year but as i have been claiming for three years my next check isn't for another seven years.

I have had two checks for disability and even though i wasn't symptomatic on the day i still failed all of their tests, and that was just basic stuff like bend down! i just told them honestly and (tried) without emotion what i go through everyday.

I now work and i still get disability living allowance and if i get too sick to work again within the next two years then i go back to getting incapacity benefit at the same rate as i was paid, rather than starting again on the lower rate.

The only advice i can give is to stay calm and stay factual.

fingers crossed for you.

becks xx

[Sunfish]

heidi et al -

as a general rule my understanding is that it is "easier" to keep benefits than to get them initially, though i'm not sure if this carries over as much from state to state. that said, i certainly understand why you are worried.

hopefully the reapproval/certification will go smoothly, but if something happens & it doesn't, it might give you a bit more reassurance (as a "worst case scenario" back-up of sorts) that you can appeal the decision and continue to receive benefits while doing so. there are certain procedures that would need to be followed & if the appeal didn't come through the money would have to be repaid, but if you're confident that the reapproval will happen eventually hopefully this info can help you not worry quite as much about the day to day finances should there be a glitch along the way. the link to more info about this is http://www.ssa.gov/pubs/10090.html. again...hopefully it won't be an issue at all, but i thought you still might like to have the info "just in case."

i do think it's very important that you have a doctor who is 100% supportive of your inability to work. b/c honestly this could be a dealbreaker and not an easy thing to get around. if one of your current doctors is someone who you think could be this person with a bit more conversation or explanation, then great. but if not i really think you need to find another doctor. it doesn't have to be someone who is a top autonomic specialist but more importantly someone who is willing to learn, able to understand your limitations, etc. perhaps one of your previous doctors could even talk to this person to help in the "learning curve" so to speak. i KNOW that all of this takes time & effort & energy but not having at least one current doctor who "gets it" is going to be a continuous problem in terms of disability benefits & in general so it's something that is going to be harder in the long run if you don't try to deal with it now. personal descriptions detailing you day-to-day capabilities, physical struggles, etc. are all helpful, but ultimately you do need a doctor to be behind you as well.

while i do understand why someone might decide to try to set up a situation for the worst symptoms to be seen for an exam/ appt, especially in the context of an illness with variable symptoms, good/bad days, etc., it's not something i would recommend and in fact i would strongly caution against it. ultimately if anyone - even the person's own doctor - found out that someone had done this, it could be very problematic. benefit/ disability determinations are intended to be based on a person's ability to work WITH treatment, not without. forms are filled out, medical records submitted, etc based on the person's functional capacity with medication/treatment/etc, not without. without treatment hundreds of thousands of people who are able to work without difficulty might in fact be disabled, including but not limited to many with diabetes, asthma, heart conditions, etc. more specifically, i know many on the forum who now or in the past were able to work only b/c of medication. so even if someone very clearly qualifies for disability benefits despite all the treatments/ medications/ medical intervention in the world, intentionally stopping things that help for the purpose of an evalution could be looked at as an attempt to trick the system (perhaps even considered fraud) & could cause endless trouble for years to come.

i do wish you the best. the SSI/SSDI process at any stage is far from perfect. the exact same application/ situation might be approved in one state & not another, some people get approved who shouldn't, and some of the sickest/ most disabled have to fight for approval for years (sometimes even dying in the process). so do what you can - both now & looking forward - and hopefully things will work out.

all the best,

melissa

[cutiepie50]

There really is not enough time to find a new doctor who will 100% support me. ALL doctors want tests,etc. So that is easier said then done.

I have been doing alot of reading up on this and basically no SSID doctor can tell by one exam if I am capable of working or not. SO,the important thing is to be honest and do my best. I worry most because there are crap here in Jax FL for POTS doctors and none specializing in pots like back home in WI. SO I am getting those records from WI even though they are old..but I have not improved. And to add to that I have gotten Congestive heart failure and COPD since POTS. OBviously I have worsened. And meds for pots are really nothing but to keep me as comfortable as possible. I can not take alot of them such as betea blockers and flonef because they bring on my pots. I like that I can appeal and I can also use my lawyer from WI who originally got me benefits and it is good to know as I appeal,if it comes to that,that I get my benefits.thanks for tellinig me that.

[flop]

Hi Heidi,

I agree that trying to find a new doctor at short notice is likely to be futile. But it is worth continuing to search for a supportive doctor to help with your future care and should the worst happen and you have to appeal to help with that as well as your reliable lawyer.

Like I said before, try not to worry too much and just be honest with the assessors. In the UK it is normal to be reassessed regularly to keep your benefits, it may simply be that the procedure in your new state is different from the one you were previously used to.

I hope it all goes smoothly on the day and that you continue to get the benefits you need,

Flop

[Sunfish]

heidi -

when i was trying to encourage you to pursue having a doctor that is more supportive, i didn't mean to imply that you'd be able to make this happen before your review/ appt. i simply was trying to encourage you to do so at some point b/c in the end i think it would be well worth the time & effort. i definitely realize that it's not an easy task to embark on (and tried to emphasize that in my previous post).

hang in there,

melissa

[cutiepie50]

Oh, I misunderstood you...sorry! I have been looking 3 years for good doctors that support my disability for POTS. It was rather easy in WI to find that support,I do not understand why in FL in Jax it is so hard. But, my daugther said something that made sense......Shands Hospital,which takes my insurances(and most don't) is a government hospital. And Bring that SSID is gov.too there does seem to be a connection.

I just do not get how a doctor who sees me in a wheelchair and me and my daugther told him I can not sit long or stand long or stay online or read or watch tv for long periods of time thinks I can work??? That just really baffles me.

He is the second doctor I have gone to for pots. the first one was super super mean!!

The other doctors I have are really nice,but not the ones I need for disability.

I will fight and appeal and appeal if I am turned down. And my health has worsen since I first got pots.

It makes me upset when I see a tv show on disability and this lady got it for not being able to forward phone calls on the phone!FOR REAL!!! AND HERE I am really ill and fighting to survive.