Stace915

Opps, yes I did mean Beverly not Beth! I don't really have any pressing questions or concerns, just a basic follow up and my usual Summer heat complaints. Thanks!

Hi, I was wondering if anyone has had an appointment with Dr.Grubbs assistant Beth. I saw him about 6 months ago, and he was wonderful but rather than waiting another year for another appointment with him he told me to see Beth for a follow up? I was just wondering if I would be better off seeing her, or waiting the 9 months-year to see him again and follow up with my local cardiologist in the interim. Also does anyone have an appt there on 7/30? I would love to meet more fellow dysautonomiacs (I think I just made up that term!)

these are great and so true!!

I am off for my first swim, I will let everyone know how it goes!

I just got back from joining an indoor pool (at Dr.Grubbs request), I tried the treadmill last week and I could only make it for 8 minutes of slow walking and then I needed a 3 hour nap. When I got the tour of the pool I was upset because they have a full gym and I really wish I could work out and get back in shape. I have gained a few lbs from Florinef but mostly I just think exercising would make me feel better mentally and like I am actually doing something. Anyways I was just wondering if I should start out trying to laps in the pool, or just play around in the water, and how long I should spend in the water. Anyone have a suggestion?

I just got back from my first appointment with Dr.Grubb. I was hestitant about keeping my appt b/c I do not currently have insurance and it was $350, but I am SOO glad I went. He spent 3 1/2 hours with me, never in my life has a doctor spent more than 30 minutes with me. I was afraid that he would just tell me the same things all the other specialists have, but he was so helpful. I really think that the fact that he is a cancer survivor helps him relate so much more to the patients, he even gave me a hug when I left. He told me that I have hypermobility, which I had never heard of, and was amazed that so many people with that also have dysautonomia, and it was just so crazy to me that he could tell that from bending my fingers and touching my "velvety" skin. And to think all these years when my boyfriends said I had such soft hands I always just said, well yes I am a girl I am supposed to lol.!! Anyways in all my Dys. research over the last 2 years I never heard of hypermobility and was just wondering how common it is amongst everyone on the forum. I am going to search it on google to get a better understanding if anyone has any good info please let me know. Thanks one more thing is it the same as EDS?? Thats what it sounds like from the different past posts I looked at

Yes I guess after waiting 9 months, a few more hours is nothing!!

I have my first appt with Grubb on Monday the 23rd, is there usually a 4 hour wait?????

I just moved to Ohio from NY and quit my job, I was getting benefits through COBRA but it was $485 a month!!! So I had no choice to cancel it. I am in the process of waiting to hear from Blue Cross/ Blue Shield about a policy, they told me that everything should go through with no problem however when I called to follow up I was told that now they need me to give approval for them to get my records from my dysautonomia specialist in NY.... and I am praying that they approve me b/c I have my first appt with Dr.Grubb coming up and I don't want to miss it. Has anyone else had similiar trouble or have suggestion on another company I could contact??? -Worried Staci in Ohio

Figured I would ask, it would be nice to put a face to someone name on here

I get the same way too only thing that helps me is sleep. I was on Seasonale for a little over a year and had to go off b/c I was having clotting in my leg, so I had to go off the pill completely... now I suffer every month again

I never drank caffiene and my doc suggested it, the first day I was jittery and now I force myself to drink 1 cup of coffee every morning after I take my meds and its really helps!

I take celexa, I dont know what kind of anti depressant it is but I take 40 mg a day.. and it helps with the depression caused by dealing with all my health issues, and it also helps keep my BP up along with my other medications. I can not even imagine what I would be like right now without it!!

How long are they going to be selling for??

Hey everyone, I have been MIA because I moved and have not been able to get online. I just wanted to say thanks again to everyone who voted for my design, and those of you who didn't I hope you still like it, haha!! I just sent a link to all my friends and family. This site has been my saving grace since I was diagnosed!!!

Any updates on when we can expect the shirts to be ready?

So as if dysautonomia, and the blot clotting in my legs last month were not enough... now my tonsils are so swollen that they are making me choke!!! Have a doctors appt. in a little while, missing yet another day of work.. that I am not getting paid for. I am only 25 I am going to end up in a nursing home by 30!! Sorry just needed to vent and I can't speak b/c I have marbles in my mouth - a very very frustrated and sick staci

Hi everyone, I think we decided on August 6th for the NY get together, but I haven't heard anything else.. just wanted to find out if its still going on, time, place, cost etc... Hope everyone is staying cool!

Mine is a Kodak and is super easy to use, its 5.0 mega pixels and was around $200. Its not a fancy camera by any means but I like it!

well I went to the doctor yesterday and have an answer to the mystery pains... I have minor clotting in the small veins in my leg for now I am just taking aspirin for a few days and hoping that it thins my blood out but if it gets worse or spreads I have to go to the ER and go on blood thinners. I am a little freaked out, I guess its not terrible news but blood clotting sounds scary... I'm 25 and have soo many health problems in the past 2 years its ridiculous!!

probably 3 if not more, depends on the price :-)

thanks everyone, unfortunately I am home from work again today.. finally got a little bit of sleep. My left leg is feeling slighty better but the right one is still killing me. I put an emergency call into my doctor but of course he is out of the office today and whoever is on call has not gotten back to me yet. All I know is I MUST go to work tomorrow or I won't be able to pay my rent and that would just be bad!! Gonna go put my legs back up and take some more ibuprofen and pray the right leg follows the left and feels a little better.

so I have no idea what is causing this but since I got home from work last night both of my legs and feet are in soooo much pain. I took a sick day today b/c I was up all night in pain and dizzy and lightheaded. I tried advil, a heat pad, ice, showering and letting the water hit them and stretching and nothing is helping. This has never happened before and I don't know what causing it or how to fix it but it hurts sooo much. anyone have a suggestion PLEASE!! I haven't worn my compression stockings in like a year b/c they never helped but I guess I will give them a shot.. .OUCH

the midodrine never gave me a headache but the florinef does, I take claritin 24 hour along with 3 advils twice a day and that usually keeps the head aches and pressure in my head down

the heat *****.. i haven't left the house since friday nite, just been in my apt alone in the ac so fatigued all i have done is sleep.. and eat... ugh how depressing my second summer like this and all my friends are traveling the world and europe etc. and I am hibernating and being miserable and gaining weight from my meds sorry I am not the happiest of the people right now. Hope everyone else is dealing with the heat a little better than I am. Alexia-- awesome news good luck!