sandra claus

Hi, I have a hyperkewl vest from Amazon. They are 39.99 plus shipping. It is the type you soak in water and it cools through evaporation. It's a little muggy but it's affordable and it helps. I have not tried the more expensive ones myself. Good luck.

Congratulations! Thanks so much for sharing how you are doing. I look at older posts and notice many people who don't post anymore and have wondered if it was because they had improved. I have had such a hard time trying to decide to let go of certain responsibilities (work, five horses, projects) because I'd hate to let them all go and then magically recover. But, I know deep down it is important to let go and focus on healing and taking care of ourselves and then try to work back up to the demands of our former life very gradually. Also a great time to take stock of what was important in our lives pre-illness and what wasn't.

I heard about these a year or so ago. You set up a treadmill with a standing height desk or shelves and run it at 1 mile per hour so that you are at a gentle walk while you work, talk on the phone etc. Since having POTS I have usually felt best if I am moving a bit without exerting myself and have been thinking about trying something like this, since I work from home. I guess the main thing would be to set it up so you could shift to a sit down desk with your computer, etc. easily when you had enough. Has anyone tried this?

Hey there, I haven't had endometriosis but suffered through super heavy periods, cramps bad enough they put me in a state of shock basically and low ferritin levels. I got an endometrial ablation in March as an alternative to a hysterectomy. I'm already sans gallbladder and thyroid gland so I thought I might want to keep this organ :-). I have no idea if it is of any help for endometriosis but my Ferritin levels came up from 4 to 41 in 3 months and I was only getting in two iron pills per day vs. the three they wanted me to take. I now have a "panty liner period" and no cramps. Have they told you not to take iron within 4 hours of calcium (or thyroid replacement) as they bind up together? No one ever told me that as I struggled with my ferritin levels and they wouldn't come up. I take calcium in the eves to keep the restless legs under control so I could sleep and was taking all my iron at the same time so I wouldn't have to deal with the upset stomach. Also iron is best absorbed when taken with some vitamin C. I didn't go the iron infusions route, it was offered to me but Doc said I could go either way, as I have heard that there can be allergic reactions to it and I have allergies and sensitivities. If anyone was going to react I figured it would be me! Doctors visits are exhausting and frustrating, I agree. I had a rule of no more than two appointments per week for myself and tried to prioritize. I have done phone appointments with my PCP on a couple occasions, too. Hang in there! Sandra

Hi everyone, this is my first post and I've not introduced myself yet... I checked with the THRIEEM Pots registry re. the exercise program today because my cardiologist had not gotten a response to his e-mail last Friday. I got a response that said the gal who has e-mailed previously is on maternity leave and the registry may not be attended while she is gone (until September). Has anyone else had a recent response? Thanks, Sandra