Quick Help Please

[janineerrn]

Hi Everyone,Hopeit was a good day!

I am sorry to vent and then ask a questionbut I am braindead and tired and so much is going on.

Fighting for FMLA at work because my1 year date was May 25 and i went out on med leave on 3/19. I worked oer 1250 hours and I was still receiving company benefits past my med leave date (I thinkthis is the last month of both STD and Med insurance if i dont win this fight) = No money.

Youknow how much my meds cost, tryingto get the 3 month mail order refill thing done but my meds are written by so many different doctors and one wont write one RX another wont write the others RX and they all want me to come in to visit for refills and I have too keep up with side effects and all the copays for each doc to get an RX then to get a 3 month refill, and then just getting to the doctors not to mention I may not hae insurance August 1st.

Applying for social security, cant find one doc to help do all the medical documentation, trying to get all evaluations in b4 insurance runs out. Still not sure what I need to prove to SSI, they can come live with me for a week.

Trying to keep medical records together, and get them, because when i was at Duke they kept my copies instead of getting thier own so now Im gathering 3-4 years worth of medical records. Trying to keep up with medical miles and out of pocket expenses for taxes.

Trying to keep household together (hah) at least hubby is starting to see the light after a lot of conflict and role changes. At least my 19 year old daughter painted my toe nails purple for me. Im almost in a size 10 was wearing a 14 last year. Thank God for thrift stores or Id be wearing me some suspenders.

Ok Im sorry, I could go on but Ill spare you, most of you know the drill.

The question, Please give me some good links to excellent info on NMH POTS that I can print out and give my doc. Im going back to the adult cardiologist. The first cariologist diagnosed me but says he cant do anything else for me. My family doc, whom I love, cant really treat me she is family practice. The pediatric cardiologist who knows POTS and understands, and cares cant help me with disability.

This is the cardiologist i went to who said she never heard of an autonomic disorder being so severe. I really like her but want her to understand. I am going to suggest she call Dr. Boris the pedi cardio, but Id like to give her written info too.

Thanks All

Im kinda high strung and anxious right now.

[MightyMouse]

You can find some excellent links in the help yourself thread, pinned at the top of the forum.

http://dinet.ipbhost.com/index.php?showtopic=1954

skim through the sections, and consider printing the following:

http://www.ninds.nih.gov/disorders/dysauto...ysautonomia.htm

http://www.aafp.org/afp/20031215/2393.html

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4787

http://www.ndrf.org/NDRFHandbook.htm

http://www.dinet.org/NCS/ncs.htm

Hope these help you. I tried to stick with well known, respected sources--such as NIH, AAFP, Vanderbilt, DINET and NDRF.

Nina

[janineerrn]

You can find some excellent links in the help yourself thread, pinned at the top of the forum.

http://dinet.ipbhost.com/index.php?showtopic=1954

skim through the sections, and consider printing the following:

http://www.ninds.nih.gov/disorders/dysauto...ysautonomia.htm

http://www.aafp.org/afp/20031215/2393.html

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4787

http://www.ndrf.org/NDRFHandbook.htm

http://www.dinet.org/NCS/ncs.htm

Hope these help you. I tried to stick with well known, respected sources--such as NIH, AAFP, Vanderbilt, DINET and NDRF.

Nina

<{POST_SNAPBACK}>

Thank You for these, I already had some of theese articles printed out (lol).

Janine

[Rita]

Recently I was covering the internet on orthostatic intolerance you should really look up chronic fatique syndrome. There is a link between cfs and oi and the social security has just updated there records too make it easier to apply for disability. You may want to check and see if you also have a social security office near you sometimes they will even make house calls to help if you can not get out. They may be able to help you in more ways than one. As far as medical bills go sometimes they will provide you with medicaid despite your age considering you have enough of them. As with the rest of us with oi and cfs I'm sure having enough medical bills is not an isssue. Hope you can get some help make sure to start with the department of human services and or your social security office they will help to get you start asap. If you do not have these resources sometimes local health departments can help as well.

Good Luck,

Rita

[Sunfish]

janine-

here's something else that might be helpful:

http://www.mayoclinicproceedings.com/inside.asp?AID=112&UID=

it's on quality of life with POTS in comparison with other more known/recognized health problems.

also, i don't want to discourage you, but the FMLA laws/rules/regulations tend to be pretty steadfast and require a year before the leave begins. individual companies/businesses can do their own thing more liberally, but in terms of the actual guidelines to fall back on the year needs to be before the leave begins & is a requirement in addition to the hours worked. here's a link to the actual law:

http://www.dol.gov/dol/allcfr/ESA/Title_29...9CFR825.110.htm

of course the FMLA issue doesn't have any bearing on SSDI, SSI, etc...

i do hope you're able to get the supports you need to get things moving along. i've had to deal with a lot of the same systems this past year & know that it can be so incredibly exhausting, frustrating, etc.

:-)melissa