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Rachel

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Posts posted by Rachel

  1. Fyi, Smoking

    in Dysautonomia Discussion

    Posted

    Thanks for sharing. And congratulations! That's great that you're feeling better after quitting and even able to reduce your med load!

    I was glad to read your info. Someone was joking with me last week and saying that I need to take up smoking. It is good to hear the truth about smoking!

    Rachel

  7. Skin Wrinkling

    in Dysautonomia Discussion

    Posted

    Interesting! I've never had a doctor ask me this, but I would be interested to find out how it's connected to dysautonomia. I have noticed that the skin on my fingers wrinkles up much more quickly now than in used to when I was little. The pads of my fingers also get wrinkled up sometimes even if my hands aren't wet. I just figured I was getting "old!" But maybe I have an excuse. :)

    Rachel

  15. Anyone Get Treated Like A Circus Act?

    in Dysautonomia Discussion

    Posted

    Cardiactec,

    Yes, I know what you mean about feeling like you're being treated as if you were a circus act. I have had a few nurses get too excited about having me as their patient. They think it is all so "interesting!" And it gets harder when they start giving advice. I know they are just intrigued and that they mean well. But this is something I've been dealing with most of my life. Dysautonomia not the most exciting thing in my life and you can't just "fix it" in ten minutes. I try to put myself in their shoes and understand where they're coming from. But, yes, it is hard and I get tired of the questions.

    Sorry that you're having to deal with this.

    Rachel

  16. Ssdi Hearing?

    in Dysautonomia Discussion

    Posted

    Dear Susie,

    I hope that your hearing goes well. And I hope that your attorney is a big help to you as you fight this battle.

    I was waiting for my hearing in the fall of 2005 (only a few months after I requested a hearing), but then I got a letter in the mail from the judge saying that my case was approved. He said there was enough information in my file to make a decision without holding the hearing. So, who knows - maybe you'll get a good judge like that!

    Since I didn't quite get to the hearing process, I don't really have any advice. But here's something that you might find helpful: http://groups.yahoo.com/group/Disinissues/ Disinissues is a group that gives advice for Disibality Insurance Issues. It is done through email, not on a forum. You might want to check it out. It is a helpful way to get answers and advice to your questions. And it all comes to your email inbox!

    Don't give up hope or patience as you wait for the hearing. I wish you a good judge's decision!

    Rachel

  18. Tilt Table Question

    in Dysautonomia Discussion

    Posted

    Julie,

    Yes, my extremities turn purple (because of blood pooling). This is common with POTS. And I've had the pulseox (the finger clip) stop registering too. My nurse wasn't sure what to think! I was her first POTS case and so she was learning a lot! I think the pulseox stops registering because the blood just stops flowing well and so it can no longer detect the pulse.

    I'm glad that the florinef seems to be helping you. Hope your doctor can continue to find some good treatments for you.

    Rachel

  19. Tests Other Than Tilt That Can Diagnose?

    in Dysautonomia Discussion

    Posted

    Cindy,

    I'm glad you have joined us here on the DINET forum. :-) I hope that you can find some of the answers, information, and support you need.

    When you go back to the cardiologist, I would definitely ask him to check your pulse and blood pressure after you have been lying down for 10 or 15 minutes. Then stand up (but don't walk around) and have him check your pulse and blood pressure again after 10 or 15 minutes. This will give you a clearer picture than you had at the neurologist's office when he checked it after only 30 seconds. Like Persephone said, many people don't have an immediate change in pulse. But a pulse that goes up 30bpm after 10 minutes is still POTS.

    Hope your visit goes well and that the cardiologist can help you. Let us know how it goes.

    Rachel

  21. Length And Progression Of Disease

    in Dysautonomia Discussion

    Posted

    Dear Wibbleway,

    I'm so sorry that you and your husband have to suffer through this disabling condition. I didn't quite understand from your post what exactly it is that you are dealing with. Is it dysautonomia? Cancer that has returned? Something else? All of the above?

    I can answer as far as POTS and dysautonomia goes. I've been symptomatic for 12 or more years. It was very hard from 1995-1998. Then I felt a little better for a while and was able to have somewhat of a normal life. Daily life was challenging, but I could make it through. My health has been getting worse since 1999. It was slowly getting worse for about 4 years. But it has been declining faster since 2003. And come the fall of 2004 I crashed really hard. There were days that I couldn't get out of bed to get to the kitchen. So if my husband was at work I would just lie in bed hungry until he could come home to feed me. It was really bad.

    Things have improved a bit since then. But I still can't go out without a wheelchair. I can walk short distances in the house, but I can't stand for more than a minute. I still need help with showers. I can't usually get out of bed before 10 in the morning. I can't cook, do laundry or clean, so my husband has to do all of that. And most days I need some help with dressing/undressing too. Somedays I am too weak to even hold a phone up to my ear. And we have a one year old son to take care of too.

    Sorry, I don't mean to go rambling on about my difficulties, but I do want you to know that my husband and I certainly understand physical disabilities and the challenges that it presents for me AND for him. I get frustrated with not being able to be the mom and wife I want to be. It hurts that I can't cook and clean for my husband and take care of his needs. And it hurts my husband to see me suffering physically. He wants to fix it, of course, but he can't do that. He loves me so much, though, and he faithfully cares for me day after day. He doesn't complain about it, but I know that it is hard on him. Being a caregiver can be lonely and discouraging. But I also know that he wouldn't trade being my husband for the world.

    Have you ever looked at the patient handbook on NDRF's website? You and your husband might find it helpful. It talks about dysautonomia, what it is, and how it effects us and our caregivers, and more. Here is the link: http://www.ndrf.org/NDRFHandbook.htm

    Here is another link for a page that talks about caregiving and things that the caregiver has to face and deal with. There are tips on this page from caregivers: http://www.ndrf.org/Caregiving.htm Also, at the bottom of that page is another link to a caregiver presentation that your husband would probably like to read. I know my husband appreciated these pages. People often forget that the caregivers suffer too and that they need help and encouragement.

    Sorry for the long post. Hope you were able to find some of the answers you are looking for in here. You can also read posts on the forum for a while and you will find many others who face incredible difficulties every day due to dysautonomia.

    Lots of love,

    Rachel

  23. Thinking About Seeing Dr. Grubb

    in Dysautonomia Discussion

    Posted

    I have not had adequate care for over 8 years now. So I need to see a very good doctor to make sure there isn't anything else going on with my health besides POTS. I might also need to find a new treatment plan. I've heard lots of good things about Dr. Grubb on here, so I thought the trip to see him might be best for me. I was just wondering what to expect from an appointment with him.

    Does he just look over past medical records?

    Does he do an exam? If so, what all does he do?

    Would I do tests while I'm there?

    How long of an appointment should I expect?

    Does his office accept Medicare?

    Sorry - so many questions! :blink: But I don't like surprises!

    Rachel

  24. How Many "2nd" Opinions Has Everyone Had?

    in Dysautonomia Discussion

    Posted

    I've seen lots of doctors. My diagnoses along the way include:

    1. exercised induced asthma

    2. allergies

    3. stress

    4. "There is nothing wrong with you. You're making it up."

    5. NCS

    6. Vasodepressor Syndrome

    7. Orthostatic Hypotension, severe near-syncope, and fatigue

    8. Peripheral Dysautonomia and hypovolemia

    9. Dysautonomia, Orthostatic Hypotension, and Sinus Tachycardia (This doctor had not heard of POTS yet).

    10. Orthostatic Hypotension with compensatory Sinus Tachycardia

    11. Orthostatic Hypotension and Inappropriate Tachycardia

    12. POTS

    It took a long time, but I was eventually diagnosed correctly. POTS has been confirmed many times. I'm still looking into some of the other things to see what is correct. There might be more than POTS, but further tests will be necessary. I was diagnosed 11 years ago when there wasn't as much known about dysautonomia and there was even more confusion in the terms (as evidenced in my last several diagnoses above!).

    If you think you have been diagnosed incorrectly, and if you can afford to, you can keep studying and going to doctors until you get a diagnosis that fits. It is helpful to have a treatment plan that is as close to the true diagnosis as possible. But it is up to you and your doctors to decide if there is more going on that needs to be discovered, or if everything has been discovered as much as medical knowledge will allow.

    Good luck.

    Rachel

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