JaneEyre9

What great news, Ernie! Sounds like it was the best case thing that could have happened. Way to go!

Kristen

I'm so sorry you're suffering Morgan. It's really unfair. I don't understand why things like this keep happening. I don't know what else to say other than, I care!

Kristen

Had to chime in on this one...

I used to love the feeling of a shower everyday and having smooth legs. Now I'm lucky if i'm able to shower after exercise at rehab. I always have to wear long pants there to cover up my hairy legs too. One time i felt about to pass out, but i spotted my pants were hiked up, so i was struggling to stay conscious and cover up my hairy ankles at the same time...it was quite a sight!

Also, one thing i really miss is blow drying my hair. The standing and the heat make it pretty much impossible. So my hair air dries in half wave chunks. Guess it doesn't matter too much since i stay at home and lie in bed anyway. But i totally relate.

Kristen

Oh Melissa,

I feel so much empathy for you. The emotions are so hard: extreme let-down after pushing so hard, acknowledging your worst fears... readjusting to your new reality...

I just want to tell you that i admire your courage and your attitude. You have responded so maturely. Obviously i've never been in your exact situation, but all the feelings you said you are having, i've felt. Whether it was withdrawing from courses in college because i was too sick in the building, or having to stop school and work short of finishing my degree this summer... I've felt similar pain.

If you want some company this weekend or next week, give me a call...i'll get a ride over to your place somehow and bring some ice cream We can lie flat together and maybe watch a movie...or talk! Don't worry about showering for me...i have been averaging about 3 per week now that my body's wrung out from rehab.

Kristen

I was so much hoping to read better news. I can't believe that an ablation is all they can think of! It's unreal. Thanks for updating us, Ernie. I'll be praying for her.

Kristen

Hey Nina..

If you haven't tried it, you may want to ask your doctor about guaifenesin. It is a pill (not a liquid), and it supresses the hypersensitive coughing reflex. When I took it, I was finally able to get the sleep i needed. Not sure if it would work for you...i know we're all different! Just wanted to mention it in case you didn't know about it.

Kristen

PS-- it also helps thin mucus and get it draining! hooray!

Hi Ernie!

This must be a really exciting time for you! I remember reading about your conference before i joined up on the board. I hope that everything goes wonderfully. Having your wheelchair should definitely provide some extra security. You will be in my thoughts!

Kristen

That's great news! It's so wonderful when we are able to exceed our expectations of what our body can handle. I know breaking through those barriers is quite a feeling. It may seem small to someone else, but it feels like a party to us when we can finally do something "normal" that we've wanted to do for a long time.

Congrats and thanks for sharing!

Kristen

Hello and Welcome!

Sorry to hear that you have tachy during sleep. Does it wake you up throughout the night? I have tachy when i am trying to fall asleep and also like steph said, when i wake up in the morning. I'm not sure if it affects my quality of rest or not. Have you been to a sleep clinic? I'm not sure if they would be able to help with that sort of thing. Also, are you on a beta blocker?

Kristen

Oh Nina...it's never easy, is it? I'm so sorry that your repiratory symptoms aren't clearing up on the antibiotic. Is there anything that helps treat your symptoms while you're waiting for the blood work? Would a strong cough suppressant work? I hope you get some relief soon. I sure know all about the asthma and the agony of not being able to sleep because the coughing is so bad. I hope that you get some answers SOON!

Kristen

Hey Becky,

Sorry you are having such a horrible time. You must feel awful. Have you been getting your potassium levels checked? You might have muscle weakness from the Florinef causing low potassium. It could also be weakness from your infection. I hope you feel better soon.

Kristen

I'm similar to you melly. At cardiac rehab, i'm pretty dizzy around 85-90/50-55 before exercise. when i do some exercise it will go up a bit (and i feel better), then after i'm done it comes back down lower than where i started. not fun. i think i may be similar to your son because when i feel like i'm going to black out, my bp will spike high. anyway, once you learn what helps you please tell me!

Kristen

Hey Nina,

sorry things are still not going well. I know what you mean about not having many antibiotics left to choose from. I have the same sort of problem. Also sinus problems are the worst. I'm amazed that you have been able to even get out of the house much less work! I feel incapacitated when i have sinus issues. Hope that you are able to get on top of this soon!

Kristen

Hi Gwendolyn,

I'd schedule a little down time for yourself after the test. I know when i had mine, i had a delayed reaction to the lactose drink and needed some rest at home. Hope that you get some answers from the test! good news is, if you are lactose intolerant, it's an easy thing to avoid dairy these days! lots of tasty substitutes.

Kristen

Boy Melissa,

I've had my share of ignorant prof responses, but yours sort of takes the cake with the whole "social work, discrimination, sensitivity to disability" theme going on in the class. I mean, you can understand if some old engineer guy makes some insensitive remarks, but seriously. Social work. Disabilities. Is this woman in the right building? Did she make a wrong turn on her way to school?

Looking at it objectively, i can sort of see where she might think she was helping, but it makes me laugh to think about going to Susan and handing her books about how to cure blindness with home remedies.

This is really not a laughing matter for you though. I know the trepidation you must feel knowing you have to communicate and deal with this woman for the rest of the semester. I've had moments like that too where i was like, ohhhhh boy, there's going to be a clash of the titans here. When that happened to me, what i did was just behave as respectfully and normally as i would with any other professor (which i know, of course, you would anyway). Even though they made life difficult, i just called in the support of disabilities services. They never let me down in tough situations.

As for your situation, you might want to do the letter, writing up the incident and then mailing it to the disability liason with the understanding that she'll keep it sealed in case it's needed. That way someone you trust has the description (so there's no fear of it getting into the wrong hands), and also it's dated and sealed, so that there is record of the incident if things get worse.

I'm sorry you had to go through that, but i'm glad you stood up for yourself and that your classmates are a supportive group. Sounds like this lady's on some other planet. The voting thing tipped me off that you weren't dealing with the most sensitive of people.

Is this some sort of weird test to see how you'll react?

Well, keep us updated on what this lady does next.

Still cheering you on...

Kristen

PS-- you might want to ask Susan if other students have had problems with this professor in the past.

Hi Patti,

I'm glad Chrissy is feeling better, but i know you are probably worried about your house and the air she breathes at home. Could her nausea have been due to some other factor?

As far as air purifiers go, the thing to look for is HEPA filtering. Ionic air purifiers can actually make a situation worse. I'm not sure about ozone machines. I know we were told HEPA was the only way to go. Purifiers are good, but they just put a patch on things. I hope you are able to get some answers and get to the root of Chrissy's symptoms.

Feel free to email or PM me if you or Chrissy want to talk more about environmental issues. My parents and i have been through a lot. Not only was our house lost, but we went through several problems with apartments, my dad's office, and now my grandparents' house (which flooded) has mold problems too.

Let me know if I can help in any way. If nothing else, I'm just glad to hear that Chrissy is doing well at college. That is great news.

Kristen

Sounds resonable to me. Today i had an episode of greying out and my BP shot up (118/82) from being rather low (83/50). My HR went up to 140. I think your body's response is sort of individual.

Also, yes I think POTS varies a lot by minutes and hours...at least for me it does. I can have several hours where i feel i can barely get out of bed, then after a while...some rest, some hydration, some food maybe, i feel like i can stand up for a while and walk around.

Good luck to you with your doctor.

Kristen

Time to pull out the colors!! Happy Birthday, Gwendolyn !!!

I wish for you the same thing i got for my birthday this year...sunny skies and a day where my POTS was so tame i thought i had been cured!

Glad to hear you are making it through the tests. They can be really rough...radioactive oatmeal is unreal! Keep hanging in there and have a happy day!

Kristen

Morganohmy,

I wish you all the best at the hospital. Take care of yourself this weekend! We'll be waiting to hear your stories when you come back.

Kristen

Hi Finette,

Welcome to the forum! I felt so discouraged and misunderstood before I found this place. Now, even though i still get those feelings at times, i have the comfort of knowing there are others out there who feel the same way and understand my symptoms without question. It's a great place to be. Glad you found us for some support!

Kristen

Hooray Melissa!

That's great news!! Glad you shared it with us. I laughed about you writing the letter for your doctor in "doctor style." Maybe you can write your paper for school on "how to convincingly emulate MD speak." You may not have been to medical school, but i think in terms of ANS problems you have had a better medical education than the docs. You certainly know your stuff!

Good luck with the paper writing. I'll get back to your message soon. I've been having a really rough time this past weekend, so i haven't been doing much on the computer.

Hope you are feeling better after the resurgence of your infection. I can't believe the obstacles you've had to overcome! I'm cheering you on... can you feel it?

Kristen

Happy Birthday Angela!

Thanks Steph! My Grandma has celiac disease, and I'm going to print this out for her. I've always had trouble trying to eat without dairy, but celiac's have a whole other level of trouble when trying to eat out. It's so hidden! At least with me i can avoid creamy things. Thanks again!

Kristen

Hey Morgansbeenthroughtheringerandback,

You may have already heard of this place (or been there), but i did some searching on the internet and found The Heart Institute in Washington. It looks like they offer some of the specialized tests that Steph mentioned. Here is the web address:

http://www.hcnw.org

At least this group would be in tune with your heart function. They list syncope on the website as something they treat. Anyway, even if this isn't an option, i hope that you are able to get some help from that wonderful doctor of yours.

Kristen

Hi Rita,

I'm lactose intolerant. It's something that has gotten worse for me over the years instead of better. The test for it isn't so much fun...you have to fast and then they give you a drink that has lactose in it and see if you "respond" ;-) But i had that about 15 years ago, so maybe they have a better test now. I never had problems with acid reflux (except for reacting to certain medications), but i did have the symptoms you stated after drinking milk. Milk was the worst for me and i could handle a little bit of cheese. Now i can't handle any dairy. Anyway, you might have more than one thing going on with your GI system, so it's probably best to see a gastro doc. I've had good luck with the two I've seen. One diagnosed me with the lactose intolerance and the other diagnosed IBS. It improved the quality of my life tremendously. Good luck!

Kristen