potsgirl

I'm guessing that you're not going to like this suggestion, but when all else fails....Could you change your status on your 'domestic partner' arrangement so that they would only take your earnings into account? That's one of the reasons I haven't married my long-term boyfriend - because they would count our incomes together and I wouldn't receive my benefits. We know we're committed, so not having the legal document is no big deal to us, but the long-term disability, federal disability and Medicare make a huge difference!

Also, I would guess that you would need a 'proper diagnosis' that could be documented by your doctor to receive federal disability. Hopefully a social worker at the hospital can help you find the right doctor to get you and accurate diagnosis and the appropriate meds. Don't give up hope yet! It took me over 2 years to get fed disability, and I had to go to court, but I won.

Best of luck to you,

Jana

This is probably painfully obvious to everyone but me, but what does the 'XD' mean at the end of some of your sentences?

I seem to have a 'temperature range' in which I function the best. Anything warmer than 78 degrees and I'm too hot, anything under about 65 and I'm too cold. Now if I could only find a place to live with those temperature ranges. I know Arizona is not it, and neither is Iowa!

Cheers,

Jana

I've tried Ambien and other sleep meds, but they've never worked for me. Trazodone helps me relax somewhat and helps me to fall asleep, but it certainly doesn't give me a 'good night's sleep'. I do take 1/2 a Percocet at the lowest dose on days when my pain is too much, and it seems to take the edge off. If I take it too often, it lowers my BP, and I'm low enough already!

J

Nina,

You're in my thoughts and prayers. The best of luck to you while you're waiting for answers. Take care!

Jana

It doesn't take long for a pet of any kind to become one of the family, does it? I'm sorry for your loss, and hope you will someday find another pet who will comfort you as well as your bird did.

There are 3 Mayo Clinics (at least)...which one are you at? MN?

I've been on Klonopin/Clonazepam for about 10 years, and I've never noticed more loss than usual.

Good luck and cheers,

Jana

Hi Steph,

It's called 'jumping through hoops' and they like to make you do it. I had to go through a similar tedious process when I applied for both LTD and federal disability. You have to invest a lot of time and energy into getting what they need, and they're not the best at holding on to your records. You'll probably need to call and check up on them, too, to make sure they've received certain documents. Call you doctor, and make sure that they've sent what they need.

I also had to do a mental exam, etc. If you're talking Federal, I was turned down twice, and won my in court, 2 years after I applied. LTD also took about 9 months, but then you get backpay, and it makes it worth it...

Hang in there,

Jana

Lina,

I have chronic pain issues and migraines as well. Sometimes I just have to take a painkiller, so I take 1/2 of a 5 mg Percocet and it gives me relief for about 5 or 6 hours. I hope you find something that works for you.

Cheers,

Jana

I take the generic version of Klonopin, which is Clonazepam, and it seems to do the trick just the same. I really like it. Much cheaper!

J

Carinara,

Just a quick note to alert you that if you do try Benadryl as a back-up antihistamine that it can make you very drowsy. Not everyone reacts to it this way, some people can't tell a difference and some get hyper, but if I take one during the day, I'm fighting sleep for the next 4-5 hours. Other antihistamines can do this as well. I used to take Alegra-D so I wouldn't get so tired (those have a decongestant in them).

Hope you're feeling better!

Jana

Rylen,

First of all, welcome to the Forum! You'll find a lot of knowledgeable people here and support. I wanted to let you know about the Mayo Clinic...The one in Arizona no longer has specialists in autonomic dysfunction, they're all at the clinic in Rochester, MN. I was there last March, and I didn't have to wait too long for an appointment. They'd be of much more help there, with specialized testing. If you decide to go to MN, try for Dr. Brent Goodman. His schedule may be a little lighter because he just moved to the MN clinic from AZ last January, and he's great! (But we miss him here in AZ).

Cheers!

Jana

Julie,

Best wishes for Mack's speedy recovery and that you don't come down with it as well. Take good care of yourself, and get a lot of rest - both of you!

Jana

Thanks for the update! And continued support and prayers your way.

Cheers,

Jana

Marni,

Here's to continued support as you settle into your new life. Take any help you can get, and be kind to yourself. Hugs and strength to you!

Cheers,

Jana

I would apply for everything I could...And once your cardiac workup is finished, you should have new ammunition to fight with. For example, have you had a tilt table test yet? Have your cardio sign or write/sign a letter detailing your disability again, along with test results. I wrote the letter for my cardio, he changed a few things and signed it using the medical center's letterhead. Make sure you use the phrase "unable to work a full-time week" and that you never know if you can make it in to work on a particular day until you wake up that day. Apply for LTD, too! It took me several months, but I was finally granted LTD with back pay.

The sooner you apply for federal disability, the better. They almost always deny you the first time, a lot of people are denied the second, but get disability if they follow through and go to court. That's what happened to me. It was amazing how quickly the judge granted my disability benefits when I'd been turned down the first two times (I had a lawyer for court).

Keep trying and don't give up! All my best and good luck,

Jana

This topic has come up several times in the past, and at least once very recently. Try a search using 'Midodrine.'

Cheers,

Jana

An 'average woman' tends to lose 50 hairs a day. At least you're above average...(everyone can groan now).

Tammy,

You're right, and thanks for reminding me of that...I know recovery will be long and hard. Fortunately my mother lives in a place that provides different levels of care. She's in a townhouse now, but she can move over to a higher care unit if she needs to after the surgery. It makes me feel better that we have this back-up in place.

J

Thank you again to everybody! Yes, my mom has to have this surgery. She's in constant pain otherwise and is basically immobilized.

Jan, you are so warm and sweet. Amy, Jennifer and all the others, thank you for your support and prayers. Yes, I do know the serenity prayer as I used to work with recovering kids...I'll take all the prayers I can get!

Cheers,

Jana

I have such a hard time washing my hair that I only do it twice a week, and then let it dry. Very minimal brushing and the only styling I do with a hair dryer is my bangs. My hairdresser told me that leaving my hair alone as much as possible was the best way to keep it....but who knows? It sounds like this approach doesn't work for Angela.

The other thing I wanted to suggest was to make sure your shampoo is mild and that you're not allergic to it. I had this happen to me. I'm allergic to a main ingredient in shampoo, so I have to stick with certain brands I know are safe. Just a thought...

Cheers,

Jana

I would give it a try only if it had been proven in my type of POTS to work, but I sure wouldn't like it!

I have the left hand going numb symptom. It just started a couple of months ago, and it's from about my elbow through my fingers. Incidentally, I have also been tested for MS off and on throughout the years.

I drink mainly water, lemonade, or water with NUUN tablets for electrolytes. It seems like I have to urinate constantly. I keep tabs for a few days, and I drink approximately 12-15 8 ounce glasses a day. Anybody else? I try to cut off my fluid intake about 2-3 hours before I want to sleep, but I still get up at least a couple of times to urinate after I turn off the lights. It's maddening....

Cheers,

J