Miriam Poorman-Knox

I knew that. I understood your point. Thats why I wanted to thank. Many of us have a bad self image because of our weight. Miriam

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I posted taht I wish I was a size 14. Morgan pointed out that she was a size 4, and was told how well she looked. I know that I am guilty of beating myself up about my weight. My waist is bigger than comfortable. We really need to remember what is on the inside is not on the outside. We are unique!!!!!!! Miriam P_K How do we allow ourselves to feel ok about our appearance????

Sue, That is the largest size print!!!!!!!!!!!!!!!!11 Wish I was a 14 Miriam

I refer to it as "MENTAL PAUSE" Miriam

The thing that kept me sane during my pregnancies was that I didn't know I had this!!!!!!!!!!!!! Now my baby is 24 and has 2 children my grandsons!!! I got better after a rather difficult pregnancy. The reason I think is that I went back to College and worked on my BS in exercise and sports science. It took 20 years but, I eas exercising almost everyday and walking miles and miles around campus and with my kids. As for your husband, this will always be a concern. Perhaps you could come up with a plan in case you start potsing. As for telling your child this comes with time. Depending on your situation, think about it as one would diabetes. Its necessary in case of emergency or to know what to do if you pass out. This will be many many years down the road. Good luck Miriam

The most expediant way is to have a referral to Dr.Low from a doc. He also gets your medical records and reviews them. Then they call you with an appt. Since you already have a lot of MD support,I think maybe utilizing them would help. I went to Mayo and was there for 2 weeks, had a good work up, they found lots. I doubt anything Dr. Grubb would have missed. I understand he has a nurse practioner or PA perhaps you could speak with her. It is so frustrating, yet we must keep asking. Miriam

i DEFINATELY AM IN SUPPORT OF IT. Even with my profession, minister, I support research. Miriam

You can make any word you want a word!!!!!!!!!!!!!!!!!!!! I admire your drive to be able to function so well. I used to work my best under pressure, now everything seems like pressure. One more day down Miriam

I saw it, and cried. This is such a malignancy in our world. As parents we so much want to trust teachers etc.... So sad for your family. This is something that is hard to deal with. I do work with victims of sexual abuse and know that there are so many that we will never be able to help. I will make a donation in his name to dinet online of course. Blessings Miriam

Depending on what region you live, doctors DON"t know because they don't see it. I a person who does nor go into the woods......not outdoorsy except to sit outside. I ended up with a spot on my stomach. Didn't know what it was. Lived in Wisconsin, they biopsied it and I'll be it was Lyme!!!! Coulda knocked me over with a feather. I still was teaching 4 aerobics classes a day, raising my 2 kids, house etc. It was close to 8 years later that my crash came. Miriam

This weather *****!!!! For those of us in the east. Cookies would be so nice, especially since snow is expected after this rain stops. I'd even take the ones with the sugar. My pots is on the ledge. Dealing with my mothers death and family idiots. Plus the weather makes me feel that I just went through a wringer washer!! NO kidney shut downs in 3 months YEA!!!!!! Later Miriam

Amy, I have had this for years!!!! Quinine helps alot!!!!! You can get a prescription, or drink tonic water, Sugar free this is quinine water. It is often referred to as restless leg syndrome. Miriam

Briarrose, Heres a thought, I get these too no warning and quite upsetting. Since you have trouble with valium, which is what my neurologist gave me, part of OI. Maybe if you take half at bedtime and see if it helps or "breaks a cycle". I use xanax and now I don't worry about spazzing when I hold my grandsons!!!MPK

You are right the diagram is really helpful. I spent 15 min just going over it, ya know a few times. That might be something good to reference in our info.? Miriam

Sun, ASK FOR THE TEST: then your doctor will have to put up or shut up!!!!!!! forget all the other tests you have (and will) have. Any treating cardio. will find the info helpful. ???Are you afraid of having it done?????? Miriam

Sun, Glad you are feeling better. I checked on line and yes Stanford does have a tilt table. This is the gold standard for diagnosing Pots. Many if not most of us have a heart problem some a murmur, some failure some others. It is good to have the testing done, and to get the tilt table. Otherwise the cardiologists do'n't necessarily know the whole picture. I was treated for heart failure for 2 years prior to my tilt, which my cardiologist didn't think I needed, but was oh so positive. Also your thyroid imbalance causes increased HR and pulse. My pulse was normally 140bpm for years going to 200 because of my thyroid. Good to have checked. Good luck on your journey. Miriam

One of the criterion for "POTS" is that when you stand up your BP dropd therby making it postural orthostatic intolerance. There are other dysautonomias that are diagnosed, but POTS is Stand up bp down go boom Miriam

I had a rash that looked ugly. I had it biopsied. The results were that I have Mast Cell involvement. What that means is that mast cells have something to do with allergic reactions/rashes. My derm gave me Allegra. It did help and now he is trying to wean me off every otherday. But with the weather and allergins I need more. This is Pots.!!!!!!!!!!!!!!!!!!!!! I guess thats the good news and the bad news. At least we know that this is part of the process. Miriam

I BELIEVE MY CONTRIBUTION SHALL BE AN AIRLIFT FOR ALL< or we could just set up a camp there like hunters have their"camps"!!!!!!!Miriam

Rosa, The problem has to do with keeping the blood volume viscous enough to flow to the brain and heart. This sounds scary to me. Has she tried increases sodium,fluids etc....licorice root helps alot of people. I think this would be low on MY list. The pregnancy thing is that our veins arent tight enough to pull in and up the blood and we are left with that weakness. Leg exercises that can be done in bed help that. Good luck. Miriam

Perhaps you need to set a new "SET POINT" for you. Instead of expecting to feel "normal" expect to feel like you just got over a illness and work from ther. If you cant do anything standind and it sound like you shouldn't. Just do floor exercises, leg lifts, crunches. Keeping those muscles in shape pumps blood better. Also compression hose, a must for the pots patient this year. Good night Miriam

EM GO GIRL offer to give lectures to the physicians about pots, you are a natural. As for the facial wind...I had that last week, sore throat...and my nose and one side of my lip on the top nummed. My pcp wanted me to go to the hospital er, but waited for hubby looked in throat etc, said probably a virus but to take antibiotic anyway. My pcp keeps me supplied, since everytime I go to the doc I end up sick, even if it was for a routine check. I AM SO SERIOUS ABOUT YOUGIVING LECTURES TO DOCS...they really need to hear it from the patient side. Miriam

I had early menopause in my early 30's. A hysterectomy in early 40's. I will be 50 Sept 28, and not a day before!!! Last year I was in ICU for Acute Respiratory Distress Syndrome--NOT associates w/pots. Was on life support 3 weeks, dont remember much except that every survivoris a miracle and you start your birthdays over if you make 1year and I will June10!!!! So either my husband and my relationship is sick AND I AM too young to have a 4 y.o. grandson,or I can deduct 1 per year!!!! See how creative we can be!!! Also it has alot to do with what you main problems are, each is different. The most important and most difficult is activity to keep the blood pumping. Miriam

Yes, I agree your thyroid has alot to do with this. The endo. is good. Do you have a BP monitor? Sounds like you need that. Miriam