Lel

hahahahahaha! fabulous! I'm saving this for those POTSY days when you just need a smile.

ali, a big hug!

Ash, like you, I'm currently flip flopping between the two. Sunday I had to stay within 10 paces of a toilet and now I haven't gone since. I'm going to my PCP tomorrow. I think most likely she'll refer me back to my GI, but if I learn anything, I'll let you all know.

Haha, I laugh all the time about POTS being a "jerk" filter, especially in terms of dating! That said, I've "lost" a lot of "friends" as well. I try to remember that if they aren't willing to be flexible with me and my situation, then they were never really there for me in the first place. But that doesn't help fill the new, gaping void. Making new friends is tough, and dysautonomia makes it feel impossible. Most of my best friends are out of state, and my major brain fog makes just talking on the phone difficult. This site has really helped me feel less isolated, though it still gets to me. I've been unsuccessful finding POTSies in my area, but I just signed up for the Meet Others program on Dinet. Perhaps that would help you find someone local. I also started going to a therapist. If you aren't already, I recommend it. It's helps to have a sounding board for fears, concerns, ideas, etc... Often universities will offer very reduced rates (mine is $5 per hour) if you see one of their grad students. Hugs + health! Leslie

: ) I hear you on not presenting by the textbook. It took the ER docs nearly an entire day to figure out I had appendicitis. I have POTS and autoimmune issues. It so often seems like every symptom under the sun "might" be connected to one, the other, or both. My understanding is that GP is part of having POTS. I would recommend talking to a doc about it.

While doing research on Raynauld's (I was just diagnosed last month), I discovered people recommending paraffin wax baths. The actual bath seems to run around $35-50. I haven't bought one myself yet, but perhaps this can at least help with your hands and feet. I also have major, generalized temperature regulation problems. Sometimes my face will be sweating but my feet will be ice. POTS is so weird. I also have UCTD, and sometimes I feel like more things are ambiguous/variable than certain about both POTS and UCTD.

Hi Western Mass, I have all of the above (minus the weight issue). I'm not sure if it's considered gastroparesis. I also have nausea when I smell certain foods, particularly meats. My abdominal pain is normally in the upper abdominal region -- though after all my tests came back normal, my GI doc chalked it up to visceral hypersensitivity. In the past, I have also been diagnosed with lymphocyctic colitis and gastritis. (My gastritis is currently in remission. Yay for small victories.) With the exception of the constipation and diarrhea, the more fatigued I am, the more these symptoms flare. I hope that helps somewhat. Your GI list does sound really similar to mine. Keep hanging in there with the exercise and healthy eating! Oh, and I just looked up the symptoms of gastroparesis on Mayo's website. Check it out: http://www.mayoclinic.com/health/gastroparesis/DS00612/DSECTION=symptoms Best wishes, Leslie

Thanks Racer. I'm following you now. What type of biking do you do: road, track, TT, mtb?

I love this Oscar Pistorius's quote. It's a shame about his current situation, but the message of the quote stands. (Hmm, for some reason it's not letting me insert the image, so here's the link.)

Thanks CM and le! This is a good thread. I think it helps us focus on abilities rather than disabilities. I find myself really torn between trying to be realistic and optimistic. My chances of getting back to that old self (especially with autoimmune, POTS, and fibromyalgia issues) seems slim. But by acknowledging this, I feel like I'm "settling" for a lifestyle that's not what I want. The other day I was watching America Ninja Warrior, and there was a guy doing crazy high level parkour tricks who has fibro. I doubt most docs would say, "hey, here's something this guy has a great chance of doing and doing well." I am sure he has had to face a lot of battles both mentally and physically with not only himself but those involved in his life. At what point are we striving to be the best we can individually be (dysautonomia included)? And at what point are we chasing windmills with Quijote?

Any more clarity?

Hi Ruby, for historical fiction try Freedom Summer by Bruce Watson or Guests of the Sheik by Elizabeth Warnock Fernea. Note: Freedom Summer isn't WWII heavy but it's not featherweight read. I found the book really inspiring. I totally recommend Goodreads as well. It's free and a great resource for ideas. If you join, feel free to find me : ) http://www.goodreads.com/user/show/2607798-leslie

The book Coping with Chronic Illness by Wright and Ellis is mentioned in another forum post. http://www.goodreads.com/book/show/6855129-coping-with-chronic-illness I found the reference. Check out bebe127's post here: http://forums.dinet.org/index.php?/topic/22705-how-do-people-rationalise-the-whole-pots-thing/

I'm a fan of If You Have to Wear an Ugly Dress, Learn to Accessorize by Linda McNamara and Karen Kemper. I think if it as a warm blanket on a chilly day (or for us POTSies, a warm blanket for any random cold chill). It's specifically geared toward autoimmune diseases (which I also have), but I think it would be a beneficial read for anyone with a chronic illness. It really helped me begin to deal with the emotional toll and alienation. (My then-boyfriend was convinced that I was a hypochondriac, since the doctors couldn't pinpoint the problem.) http://www.goodreads.com/book/show/12115415-if-you-have-to-wear-an-ugly-dress-learn-to-accessorize On my bookcase is a copy of How Can You NOT Laugh at a Time Like This: Reclaim Your Health with Humor, Creativity, and Grit by Carla Ulbrich. I haven't read it yet, so I can't officially vouch for it, but the excerpts I've skimmed look very promising. I've found that when I can give a true laugh, then I can deal with life. http://www.goodreads.com/book/show/10255878-how-can-you-not-laugh-at-a-time-like-this

I second MyDoggie!

Along the lines of CMReber's ideas, do you parents live in a larger city? When I lived out in Philly, I discovered that some grocery stores will deliver food. You select what you want (usually online), and a van shows up with your (or your parents') groceries. You could set up a system for them to regularly receive food, perhaps a mix of food requiring low- or no-prep time depending on how they feel. Also, if they are having problems with laundry, some dry cleaners will do pick ups and deliveries. Have you or your husband tried explaining your concerns to them? Best wishes! Remember to breathe.

Pre-POTS: a lot of trail running and mountain biking; as much traveling as possible; and reading a hodgepodge of things Post-POTS: sitting outside watching my dogs play; jogging when I'm able; playing boggle and reading when my brain isn't too foggy ... I'm still have problems reconciling the pre-POTS me and the post-POTS me. Most of the things I really enjoyed were high energy activities. I still find that I think of myself as a mountain biker, but I haven't been in 3 years now. Does anyone else struggle with this?

Keep hanging in there Kris!

Boy, do I second this. Two weeks ago at PT I went into 45 minutes of full body tremors, numbness, shortness of breath, and clenched hands and feet after only 10 leg lifts. That's a small fraction of what I normally do. Why that day and not others? If you can't figure out the trigger, then how do you learn to avoid it? It seems really hard for non-dysautonomia people to understand "the switch." They see you out in public one day looking fine, and then they don't understand why you're "sick."

Thanks again Racer, I've actually used a VDOT values chart and its corresponding pace levels chart as a guide for several years pre-POTS and autoimmune issues. I agree that getting testing in a hospital is more accurate, but using the VDOT values chart is much less expensive. I also completely agree that this doesn't account for terrain. You would need to run similar terrain when using the values chart and the pace level chart. I'm a bit confused your distinction between a training system and a training tool. In my eyes both of Daniel's system and the heart monitor would be tools. I tend to think of a system more in lines with a schedule and the philosophy behind it. Will you please explain to me some more your thoughts? Nice job keeping hitting a 17:43 post-diagnosis. My times have plummeted despite solid efforts.

Thanks again Arizona. Like Aimes, I too have a normal tsh, and so that's as far as the investigation went.

Thanks Racer! I use Jack Daniel's VDOT system, which is based off of one's VO2 Max. Since getting POTS and autoimmune problems, I've noticed that many days I'm unable to keep up with (or keep up but with symptoms later) my calculated "easy" pace. Since POTS is connected to heart rate, it might be interesting to see how it goes with a heart rate monitor, as you suggested. It'd also be interesting to compare Daniel's system to heart rate training. I bet someone has already tested this but where to find it... Unfortunately I'm in a flare-up right now and am just trying to walk a bit. But these are good notes for the future.

These really intense episodes are scary, but are they dangerous?

Hi jpjd, do you know what causes this to happen? I haven't run across it in any of my POTS research so far.

Me too. I'm in the same boat with incredibly thick hair. I've had more of a problem with losing my hair than with breakage. I wake up in the morning to find hair in my bed and on the floor. My rheumatologist recommended that I try biotin. It's helped, but I'm definitely still losing. Is your hair also super dry? (My hair, skin, eyes, and throat are all crazy dry.) My hair dresser suggested that I try adding olive oil after a shower. I've actually seen a big difference with this and am hoping that I'll start noticing less breakage. I'd been assuming that my hair loss is connected to my autoimmune issues rather than my POTS but perhaps not. It is sad. For most of my life, people have identified me by my big curly hair. I keep telling myself that it's how you carry yourself that really determines whether you can pull off a look. Did you see Robin Roberts at the Oscars? http://static.entertainmentwise.com/photos/Image/585robin.jpg