Bigskyfam

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone!

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone!

ungracefulegg

taylorrose

outdamnspot

sb773

Rebecca

Jana

Lillehei

Womble 

Caretoomuch

Same here. Hormones at the moment and recovering from my daughters grad weekend and huge barometric pressure drop. I get up to go to bathroom... Try to pace myself and sit at table with Fam or on the porch with dog... Yesterday and Today were both 150+ hr days. 

Welcome everyone. Thanks Katybug for your help. My youngest daughter graduated and we are all recovering from Fam, excitement and the heat.

There is no doubt in my mind that hormones play a role. Before my big pots flare... I had mennorhagia, d and c... Then trial of mirena iud. Then my pots flare. I'm hypermobile. Trying to coast to menopause without rocking the boat too much. I'm still a good ten years away

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone!

MarleyR

Micki65

MissKristi

Schedule! It's rough some mornings when you didn't sleep well etc... But it helps me. Even if I need to lay down later to nap. I wake up to get kids up. I drink my 16iz if h2o and get a little breakfast down the hatch. I love to sleep in. It's torture to not be able to

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone!

Leeloe

Emmy84

Cherlynnjohn

Mlgobbo

Hi guys sorry for the delay... In out of hospital. Hope this post finds you all as well as you can be today!

My pots doc put in referral for aorta specialist who is trained with connective tissue disease. Appt is end of July. Although I'd like to be seen sooner. I need to have some faith and patience. I think this would overall be a better choice than a telemed visit even though it be quicker. So until then I'm not doing anything crazy and trying to take it easy... Not looking forward to a 12 HR drive but loving the fact that I feel cared for by my specialist.... And I feel better on the coast.. Thanks for asking!!!

Hubby says I do better if I move in the am despite how I'm feeling. I take 16 oz water before standing and take it slow once I'm up

I never had allergies to my knowledge since pots came along 2.5 yrs ago... Spring and pollen gets me randomly, lotions, perfume, cleaners get me at times, med allergies now and allergy to eggs. My histamine level was high... And after urine and labs it was determined neg for mast cell... However I carry benedryl and Zyrtec/ Zantac just in case. 

Katybug I believe was a huge help

I'm on ednf. This is my 4th cardiologist. I'm now seeking a consult with surgeon for opinion treatment plan. My chestpain and sob are not pleasant. They are different. Finding someone to listen and take me on will be a challenge... Big city get ready for my phone calls

It's been an up and down week. My apologies for not welcoming folks last week.

I do need referrals and yes new cardio said she said this out of her zone. She at least got me the repeat MRI. The cardio group in my hometown refuses to see me. They said let my pots doc manage me. She's a neuro.

thank you Sarah I will read it. Y'all have been so good to me here. I hope I've been even an ounce of what I received back to the group.

i know bb can be used. They aren't the best for me. Surgery once you get close enough.

i can google search and see what not to do i.e. Snow shovelling, high impact, lifting pushing... But it's still scary to not have someone guiding me thru it. I know you guys get what I'm saying

She's done. First available was October however my son was dx by their clinic with eds last month.  ( no pots) so they bumped it up to telemed appt mid June. I'm scared. There. I typed it. I've always been the pos upbeat gal. I'm having svt episodes and just generally unwell. Docs here aren't prioritizing me.

My repeat MRI this week shows further aorta dilation. I'm now at 4.0. Cardio has said she doesn't know what to do. One month til geneticist appt. prayers pls as I'm not feeling well.

My changes were going thru the passes. Altitude change from home3000 ft to 5000 ft thru the passes then down to sea level. My BP and hr go crazy. I was better if I reclined and out my feet up and then we stopped slow to sit then stand etc. I made it a point to not stop while at the highest elevations. Before and after passes. Also comfy clothes. Salt, fluids, sunglasses 

I experience times when my heartbeats runs low and seems to get stuck there. Call into cardio is always best. Strange feeling I know! Sometimes I feel I function better with tachy versus brady 

keep us posted

I referred myself to a gastro doc. Glad I did. He basically said you have dysautonomia things are going to be difficult with your gi. Whoa. Was nice to hear but to the point and a little sad. Small meals high fiber high protein watch sugars and spice. Water and questioned the Powerade ingredients.

i have slow gi, tachy and flushing after most meals, weird food allergies and the lovely bloating. I take zofran when necessary.

so for now it'll do

I haven't flown in 15 years. My pots flare happened few years ago. I never flew well. Now I know why. I travel to my specialist by car. 12 hours. I have to half the trip up. We stop often to stretch and go to the bathroom. I'm a creature of comfort so I pack my own snacks. My dream is to get an rv one day as I'm not driving. Traffic isn't kind and going through mountains makes me flare. I do feel better on the coast... Tried it 3 times so far. I understand the guilt. My kids are college age and I don't visit as often as I did or would've had I not had pots. I'm glad they understand. Keep us posted

Registration, hooking you up, laying horizontal for 45 min before tilt. My test was 5 min long. Hit 160 without meds from 60 laying. I was fasting. They gave me juice and graham crackers after and peanut butter. Sending good vibes your way. It seems everyone has a diff experience. I'm glad folks will comment after me.

I'm on a streak. Not a good one. I've had good phone contact interviews go in for sit down interview then not selected which is new for this type a personality. Part time flex hours ability to sit stand or move. Office with a door. Maybe it's not for me to understand right now but it still hurts. Getting more tests out of the way end of month. That and they warmer weather should keep my mind busy

hows it going for you guys?

All the best I have to give!