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Coming Out of the Closet with POTS!


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Amy Richcreek here, met some of you across from MCO at dinner at Ruby Tuesday's a month or so ago. Figured it was time to come out and say howdy on the board. Notice I am not using the name Tiger Lady, but my usual cybername, Herdswoman. I've made a couple of big steps the last month or so and I wanted to be able to share them. I'm actually kinda proud of myself, because I am learning to accept this disease on it's own terms and the fact that it dictates more and more of how I will live. I have been diagnosed for two years, but have had symptoms for eleven years. I've learned to laugh at myself and this disease, because crying just isn't an option. Well, at least not very often and certainly not in public. Humor is much better. Support is better yet. Love is the best. But if I'm not being particularly loved at the moment, I'll settle for a really bad joke.

I'm a registered nurse of 20 years with a background in cardiac care (medical and surgical treatment) infection control and outpatient care. I once put myself on monitor when I was at work.....worked most of a 12 hour shift with a heart rate of 120-150, no symptoms, no problem. (Gee, that's enough to make me wish I was still in my 30's, hahaha) I quit working this past March and am currently transitioning into Long Term Disability through my private insurance carrier. I am also doing the Social Security Shuffle, but it seems the folks down in Columbus don't quite hear the same beat that I do, so it's taking some time.

One thing that I found helpful was doing a little surgery while waiting for my disability to kick in for my heart. Of course, most pencil pushers haven't heard of POTS.........so it all has to go for medical review with Dr. I.N. Surance-*****. While waiting for the Dr.INS-W to google it up and read, I had my gallbladder out. The pencil pushers could understand that and I got paid for six weeks. I also sought treatment for my feet (heel spurs and inflammation that I'd been ignoring). Pencil pushers understood that, and I got paid. I would also recommend that this is the time to check out hammer toes, ovarian cysts or other female troubles, ingrown eyebrows, anything and everything that you've been putting off while trying to work.

I also got a Handicapped Parking placard. This was HUGE for me. Not a huge blow, but a huge step. It's the first time I've ever written my name on the line marked "Name of Disable Person". But what a blessing to be able to use it when I know that I'm going to be doing a lot of walking or standing. (County Fair, anyone? For a week? While your daughter shows horses all day?) Also helps me to get on shuttles, etc. that are for handicap and seniors. I figured it only matters for me, how I feel and how I am able to conserve my strength for my family. I know I look pink and healthy - and I try at all times to appear well. If someone wants to judge me, they can have at it. If someone wants to confront me in a parking lot, I have a ready reply: "Can you see multiple sclerosis?" Now I never said I had MS, did I? But the autonomic principle is pretty much the same and people who are judgmental enough to open their mouths like that don't deserve much. I decided I'd need to grow a thick skin. Screw them.

I have a wonderful daughter, Jessica, age 11 and a wonderful husband Tom. I have a wonderful mailman........oh, boy, can he deliver the mail! :D Actually, he is the husband of another member here and one of the first people I met when we moved to our new, smaller, easier to care for house just six weeks ago. Tom & I met Ron The Mailman and his good wife Julie at the dinner by MCO along with many other members. WHAT A BLESSING ALL OF YOU ARE!!!! Thanks to Michelle Sawicki for all her work! And Briarrose for coming to see Dr. Grubb or we wouldn't have met everyone. :D

My hobbies are drag racing, horses, keeping up with my family and unpacking the mess of boxes we still have in our new house.

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I just wanted to say, welcome to the boards! It's great to meet you- sounds like you've already met some of the wonderful people who hang out here and that's great! I truly beleive that surrounding ourselves with others who understand us is one of the steps to managing this illness. Once I discovered that there were others who have POTS, it made a world of difference that I could actually help someone who was worse off then myself, and look up to those who have helped me along the way. I hope to see you here often!

BTW, what does MCO stand for?? If you don't mind sharing that is...it's the code for an airport near my house, which we just moved into :D

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No worries Jess, we all have those DOH! moments--I had one on Friday when I drove to work and enroute, realized I'd not done my hair or taken my meds. Errrr... some days I really need a "do over" like when we were kids!!

:D Nina

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Welcome, Welcome, Amy!

I was so nice to meet both you and your husband. We had a riot at the dinner, and we hope to see you at the next dinner on the 20th.

I'm still struggling with some of my limitations---I guess i just don't want to believe that I have them. I can tell by talking with you that you are not going to let POTS take over. Your a trooper at heart and I admire you for that.

I could stand to take a few lessons from you. :D

Take Care,

Julie :0)

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Hi Amy!

Welcome to the forum! I was wondering where you were! I was looking out for "Tiger Lady." Good to see you have joined us. :D

I enjoyed meeting you for dinner in Ohio. Hopefully we will meet again on the 20th? BTW, anyone else in the Toledo area is welcome to join us for dinner....


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