Rachel

Hi everyone,

I need to get in to see a new doctor and am looking into the Autonomic Disorders and MVP Center in Birmingham, AL. On my first visit they want to do an echo, stress test, and a ttt. I've had all of these in the past, but it has been a while, so it might be wise to do them again.

I'm not sure about the stress test, though. I am very weak and fatigued. In all seriousness, it would only be a matter of minutes and I would fall off of the treadmill. Do you think I really need to do the test? Or can they get the results they need if I do it for just 1 or 2 mintues? If I have to push myself too far physically then I will be wiped out for 2 weeks. And I don't want to do that!

Also, the doctor isn't actually present for any of the tests. She'd be in the office somewhere, but not overseeing the test. In the past I have always had doctors to oversee/perform these tests. I didn't even know that there were places that didn't have their doctors oversee the tests! Considering the state of my health, is it wise to go through a stress test or a ttt without a doctor in the room?

Any advice you can offer would be greatly appreciated. My health keeps declining and I need help fast, but I want to make sure that I'm getting good care.

Thanks,

Rachel

Emily,

I always appreciate being able to hear some more news about Melissa. Thanks for letting us know the latest scoop. And good luck with the computer!

Melissa,

I'm praying for you as you go off the antibiotics and head into all of the unknowns that go along with that. I pray that all goes well and that you regain some strength.

It's good to hear that you were able to sit up a bit. And I'm so happy that they can give you all of your meds through your IV now. Yay!

May you be blessed with many cards and care packages this week.

Lots of hugs,

Rachel

Lauren,

Thanks for letting us know how things are going. I've been wondering how you were doing. I'm glad to hear that things are at least back up to tolerable.

Hang in there!

Lots of hugs,

Rachel

HAPPY BIRTHDAY, LINDA!

I hope you have a wonderful day celebrating you!

Love,

Rachel

On a very good day I can stand/move around for about 5 minutes before I have to sit down or lie down.

On a bad day I can only stand/walk for about 30 seconds, and only with help from my husband.

Dear Linda,

I'm just wondering how you're doing. Have you been able to get any relief from all of this crazy autonomic storm stuff? Have you found a doctor who can help you?

I'm thinking about you.

Take care,

Rachel

Katherine,

That was such a beautiful picture of Giuliana and Sabine. Thank you for sharing it. What a beautiful girl and a sweet dog.

I'm sorry that you had to put your dog down. It is hard to say goodbye to a family pet.

Thinking of you,

Rachel

Thanks for the update and information, Emily and PoohBear. And Em, thanks for your faithful "CNN news reports." We appreciate them!

Melissa,

I'm sorry you are so uncomfortable and miserable. I hope and pray that the NJ tube works well and helps you to improve. And I hope that you will soon be chattering away at your friends again.

Rachel

I think POTS must effect or metabolism somehow. I don't know why or how.

But I do know that my weight does crazy things, even when I'm not on meds, now that my POTS has gotten worse. I have about a 20 pound weight swing, but there doesn't seem to be anything I can do about it. It is nice when I'm losing weight because then I can eat all the ice cream I want, and I still lose weight. But it isn't so fun when I'm gaining weight because I can watch what I eat, but still gain.

2 years ago I lost a lot of weight and many people (my husband especially) worried about me. I ate and ate and just kept losing weight. Finally, after being pregnant for 5 months I started to gain weight again.

And finally, now my weight is back to "normal" for a little while!

Thank you so much for the smiles this morning!

That was very creative.

I hope your trip to Mayo is safe and productive.

Rachel

Thanks for sharing some good news! I'm happy for you.

Rachel

That is so nice, Kristen, that you were able to visit Melissa.

I'm glad to hear that Melissa's room is decorated well with cards and flowers.

And that is so cool that therapy dogs and her own kitty were allowed to come visit her!

I am praying for you, Melissa, and for wisdom for your doctors.

Rachel

Dear Linda,

I'm so sorry. That doesn't sound good at all. I can't believe the doctor didn't offer you more help, tests, or something! What you're going through doesn't sound normal at all.

Is there another doctor you can go to? Is there a chiropractor you could go to? Not all chiropractors are quacks. Some of them are very good at what they do and have very professional offices. A chiropractor can see if anything is wrong mechanically with the spine. If it is something mechanical, then he could help. Otherwise, you've got to see a different doc.

I have no experience with the kind of pain and swelling you are talking about. Wish I could offer more advice. I hope that you can find someone to help you soon.

Rachel

Hi Lavender,

I'm so glad to hear that a doctor agreed with you about the blood pooling! That is really encouraging! Hopefully he can work with you to try to get you on the right track for diagnosis and treatment.

Rachel

Madeline,

I usually take a shower (with a shower stool) at night. Baths are too hard for me because of sitting in the warm water. On a bad day I have to just skip a shower because I'm too weak to do it. But even on a good day I need some help from my husband. I used to do shower in the mornings, but it takes me at least an hour to recover from a shower. So my morning routine just became impossibly long for me because I can't get up early enough.

My routine for falling asleep:

I try to shower between 7 and 8pm so that my hair can dry before going to bed. After showering and getting into my pajamas, I lie on the sofa for a while. We usually watch a couple of tv episodes or a dvd. We go back to the bedroom around 10pm and I get my teeth brushed, etc. Then we just lie in bed and talk for a while. I'm usually asleep around 11pm, sometimes midnight.

If I can I do about 2 minutes of exercise before I go to bed. If I have energy during the day I save it for playing with my son or doing something with my husband. I figure crawling on the floor for 5 minutes is exercise enough!

I put my stockings on in the morning. I usually wake up around 10 or 11am. Being wet isn't a problem for me since I get a shower at night. On days that I am extra weak I'm not able to get them on, so I just skip them. But then I have to spend a lot of time lying down.

Hope you can find a routine that works for you.

Rachel

Hi Jacquie,

I've never tried Aireborne or emergen-c. But I do take a multi-vitamin everyday. The vitamin doesn't make a huge difference, but I do notice that I feel a little better when I take it regularly. And every tiny bit of extra energy helps!

The best vitamins to get (from my experience, and from what I've heard) are found in health food stores, or in the all natural section of a grocery store. It is best to get one that is 100% natural and doesn't have preservatives. The vitamin I take is a Women's multivitamin that also contains an added digestive enzyme blend and dehydrated vegetables.

Hope you can find one that works for you.

Rachel

I'm thinking of you and praying for you, Melissa.

Rachel

Lina,

Yes, I wake up tired all the time. I haven't had a day in almost 5 years that I haven't felt tired all day long. It doesn't matter if I get 8 hours of sleep or 12 hours of sleep. I am always tired and always weak. Many mornings I wake up at 10am or after, but can't actually get out of bed right away because I'm too weak. It takes my body a while to "wake up" I guess.

My best time of day is the afternoon. I'm neither a morning person nor a night person!

I have noticed that if I do too much one day that I pay for it the next day with extra weakness and fatigue. Of course, the definition of "too much" has changed over the years. What used to be a bad day, is now a good day.

I hope that answers your questions. And I hope you sleep well tonight and start to feel better soon.

Rachel

Dear Lauren,

I've been wondering how you were doing. I'm so sorry to hear that things have gotten worse with your health. And I'm sorry that you and your boyfriend broke up. That's a double hurt.

I wish I could help more, but here are a few meager suggestions.

You can call you local Independent Living Center. They can be a good resource. Here is a link to their web page that has a directory for the US: http://www.ilru.org/html/publications/directory/index.html If you click on your state then a list of Independent Living Centers in your area will come up. Hopefully there will be one close to you that you can call. The ILC can't help out long term, but they can offer some short term help while they help you look for a permanent solution. For example, last fall in Alaska the ILC offered me: a powered wheelchair to borrow indefinitely, a wheelchair cushion to borrow indefinitely, grab bars for the bathroom that I could keep, a hand held shower head that I could keep, financial assistance for prescription drugs, plus they paid for me to have an in-home caregiver 15 hours a week for 5 weeks.

You can also check with your local Medicaid office. All states have a waiver program, but it varies from state to state. So I don't know exactly what your state offers, but it would be worth checking in to. The waiver program offers some in home help (usually not nearly the amount we need, though). The problem in many states, though, is that they want you to have a nursing need (like IVs, wound care, etc.). One might need help/assistance/supervision 12-24 hours a day, but if a nurse isn't specifically needed to do those things, then you might not qualify. But check to see how your state does things. It might be a beneficial program for you. The income and resource limits aren't as low as with the Medicaid waiver as they are with regular Medicaid. So in that way it is easier to qualify.

The Medicaid waiver has a long application process (but it is nothing like SSDI!) and the Independent Living Center is a short term fix. But maybe with both you could get some help.

Maybe you could check with your local public health nurse. She might have some ideas of who can help you. Also, I think the public health nurses do home visits as well for those that are disabled. Maybe you could have one come to your house regularly to see how you're doing, track your symptoms, and record your vitals. Maybe that would even be enough to get you qualified for a Medicaid waiver.

Do you need help preparing food? If so, you can look into the Meals on Wheels program. I'm not sure if they only deliver to seniors, or if they deliver to people with disabilities too. It could be worth checking into. I've thought about checking into it becuase if we ever get out on our own again (we are living with my parents right now) I will need help with meals while my husband is at work.

I'm so sorry that you are going through all of this, Lauren. If there is anything else I can do to help (like help you find web links or phone numbers), please let me know.

Love,

Rachel

I'm so sorry to hear that Melissa's appointment was cancelled. I hope that the doctors can find a place to send her that will give her lots of help. Thank you for letting us know what is going on, Emily.

Melissa, I'm am still sending my love and prayers your way. I will pray for wisdom for your doctors, and strength for you.

Rachel

Hope you have a wonderfuly birthday, Amby!

Ouch! I'm so sorry, dizz. I hope your doctor can give you some good advice and offer appropriate treatment tomorrow.

Is the pain constant? Or does it come and go?

Sometimes I get incredibly painful headaches at the base of my skull and the pain radiates to the sides of my head too. This happens when I almost faint, or when I wake up from a faint. I don't know if that is what you are talking about or not. If I tilt my head back as far as I can then the pain goes away fairly quickly. Otherwise it stays around longer. I don't know if they make my vision cloudy or not. I've never opened my eyes during them - it's too painful! I've never been given a good answer on those headaches, so I don't know what causes them. Maybe someone else here would.

I have no idea if that was helpful or not, but that is the only really painful headache I have. I hope you can find some answers and help from some other people here. And I hope that your doctor will be able to let you know what is going on and give you some help.

Hugs,

Rachel

Welcome home, Amy. It is good to hear that you are back.

I hope that you can get back to "normal" soon. Rest well.

Hugs,

Rachel

Dear Melissa,

I hope that all goes well tomorrow and that you will be able to get some answers. I will be thinking of you and praying for you. I will be praying for wisdom for the doctors as well. Get well soon, little fish.

Love,

Rachel

Hi Zip,

Meds are different for everyone. For me, the Florinef made me retain too much fluid behind my ears, even when I was on the smallest dose. It was too painful for me to continue. I also tried to take Duravent with the Florinef for a while. That dried things up behind my ears, but it gave me nose bleeds and made me lose my voice a lot. Plus, Duravent can raise your pluse, which causes more problems with POTS! So...I went from one side effect to another and eventually had to go off of all of those meds!

The midrodine worked beautifully for me for 3 weeks. I went from being stuck in bed most of the day to being back to normal. My blood pressure stayed up at a normal level, and my heart rate stayed down where it was supposed to. But then after three weeks I slowly got worse again. It was like my body got used to the meds and learned how to be dysfunctional even with them. Agh!

But a lot of people have success with both of those. Try them out and see how they work for you. Hope all goes well.

Rachel