Roselover

Emily, I think I would love to meet you! It sounds like we have some things in common. I too need ways to express myself. It's been a long road to find new and creative ways to enjoy life. I used to dance too - in fact I was teaching creative dance classes to 3-5 year olds and pre-ballet to 6-7 year olds when I got sick. I was also taking my own ballet classes and I danced in the Nutcracker Ballet for about 8 years. I also love music but I don't sing or play many instruments. I do enjoy playing the recorder with old medieval type music. With the help of everyone here, I've found new expressions. Maybe I can email you some pictures of my watercolor painting sometime. I am still learning. I paint on my best days, knit on other days and now I make bracelets etc on the inbetween days. You are such an encouragement to me - thanks for being a part of this forum. Please don't ever leave. Ok... now I'm getting mushy so I'd better sign off After 'while crocodile, ~Roselover

Hi Ariella and everyone, I've finally decided to add to this post. It's taken me a long time to think about this one, but I woke up this morning and realized I am a different person than I used to be - and it's a good thing. The positive that's come from my illness is that I have learned to value people and just "being" more than activity. This has been a long and hard lesson, because I am a person who loves "doing". My biggest frustration with this illness is how it has taken away all the things I love to do. But this morning as I sat in bed, I found a new peace in just sitting, listening to the birds, relaxing in my relationship to God and enjoying the wonderful people I have in my life. I find that I am more often telling everyone how much I love them. I enjoy just sitting and listening to my chatty son, sitting and watching my family and just sitting next to my husband. I also find that the things I can do are more meaningful and instead of seeing them as my rights, I find them fun and a priveledge. And even the small ideas I have been doing to find a way to artistically express myeself have become more enjoyable and meaningful. So... I have learned to love the smaller things in life and in fact, to find them more important that what I used to think was important. ~Roselover

Nice Emily! Nina... I have a thank you too! I placed my first order with Fire Mountain Beads this week and have alreaedy made 4 bracelets that go on my medic alert tag! And one necklace that matches one of the bracelets. I am also doing my first selling on ebay and my auctions are going great. I'm hoping to do a little financing for more beads!! I have lots of ideas. And you're right, looking through the cataloge is fun too! Thank you for the great idea. ~Roselover

Oh Pers, I'm so sorry for this big disappointment. I had autonmic testing last Dec which was really screwy too... they said I was "normal" and yet, the sweat test equipment malfunctioned, and the report says my BP dropped abnormally and yet in another part of the report they call the results normal. Also, they had a cardio come in during the tilt part of the test and they were measuring the BP with a finger cuff. The cardio says" that's not a very acurate way to measure the BP is it?" The tech explains that in other places they use an arm cuff. Then I had to tell them that just down they hall in their hopsital the rehab dept does tilt table tests with an arm cuff. (that's where I got my first POTS diagnosis) They just looked at me surprised. Hmmph...... I don't understand how these doctors trust more in their test results than in their logical thinking! I really hope you can get more info and insight about all of this. BTW - are you OK now? How's your heart beat? Did they find anything else or see the episodes you were worried about? ~Roselover

Wow, it's nice to hear about others like me. Most of the POTS info talks about heat intolerance, but like all of you, I have more problems with the cold. Now granted when the weather gets to 90 degrees and above, I do struggle, but I really feel better in the summer than in the winter and it's not just the extra sunlight - although I think that helps. I often need to warm my body up with a warm bath or soak in my hot tub during the winter and actually feel energized by it. This seems pretty opposite of what is usually said about dysautonomia, but I think the above comments give some good insight into how this can be the case for some of us. It's nice to know I am not alone. ~Roselover

Oh Ariella, I'm so sorry you ended up in the ER! Sounds like this has postponed the other testing that might have given you more info about your condition. How frustrating. but I trust you will be able to get those tests done in the right timing. So glad you found a way to communicate and that they showed such an interest in you. That's great. Please keep us updated on how you are. Love Roselover

Oh Jesse, I KNOW this kind of disappointment!!!!!! I'm so so sorry!!!!! I saw my family doc yesterday and she said to me, "There must only be one or two doctors in the country who really treat this!" I think there are a few more than that, but she's getting the idea! Hope you can treat yourself to something nice today. Love Roselover

Pooh, Can you take the handicap appartment and then move into a regular one on the ground floor when it opens? Just a thought. ~Roselover

Blackwolf, Wow, no one can say that you didn't do your best to push through this one! I am so sorry your pain is so bad and that you've fallen deep in the hole. Sending some tea and cookies down to you - and a bright, strongly scented rose. Love Roselover

Pooh, I'm sending you a virtual pot of honey -- you need some time in a quiet thinking spot! My Winnie the Pooh was my very best friend when I was growing up. My mom made him and every couple of years he would be so loved thin that he would have to get a new skin for Christmas. Then he would go off and have an operation and come out with his new skin on! He went everywhere with me except to school and he knew all my secrets. I had six eye surgeries between the ages of 1 and 9 and he went to everyone one of them with me!!!! You have commited friends here too - just like Pooh was to me. We may not be able to help with the actual grocery buying - though we would if we were near - but we are here for your transitions and difficiult changes. We have good listening ears like Piglet! Keeping you in my thoughts, Roselover

Pers - To quote Shakespeare "Get thee to a Nunnery" only skip the nunnery and make it an EP!!! I'm worried about you! Please let us know what you find out! ~Roselover

Dear Linda, I've been been wondering about you. I haven't been up to posting much lately, but I did notice I hadn't seen anything from you for quite a while. I am so sorry you are struggling so much! Do you think it is from going off the Zoloft? Ughhh!!!! I hate all of this - for all of us! Please know I missed you and am praying for you. Love Roselover

Thank you everyone - I'm still here and not in the hospital. Talked to the doc yesterday and he told me exactly what Mary said!!! Still no movement down under but no vomiting so I'll keep waiting it out... After 'while Crocodiles, (that's for you Emily ) Roselover

I'm feeling a quite a bit better this morning, but last night I thought I might be heading to the ER again! Darn this pain! I seem to alternate between no bowel movement and then - bam... diarreaha (can't spell it ). Now I have no movement and lots of pain. The Reglan moves things along, the Levisn seems to stop them and of course I am trying to keep away from pain killers because they slow things up, but had to take them last night If I head back in, I'll try to tell my husband how to post so you'll know. Thank you, all, for caring. ~Roselover

Chrissy, The thing I like best about Disneyland (never been to Disney World) is that most of the rides are really really fun without being really strenuous. My advice is to be very careful about any rides that look jerky as this may throw you off all day. I went last year and I road the run-away train coaster and was really sorry. On the other hand there was another coaster that was smooth as could be and I did fine. I don't know if I would go on it now as I am worse this year than last, but you will have a great time even without the wild rides. Have a great time! ~Roselover

Ariella, I'd like to understand this too. Mine is usually a 30-40 point spread, but there are times that I am most symptomatic or when lying that the spread decreases to 20 or lower. The lowest was a 6 point spread. I hope someone understands this and can help us. ~Roselover

Yes, first thing I thought of this morning was all of you over there in the UK. Do we have someone living in London? I think so. Praying for you all. ~Roselover

Persephone, I think I missed something while I was at the hospital - did some financing come through for Oxford? Or are you just pushing forward trusting that it would. If was independently wealthy, you would be getting a check form the US for your Oxford studies!!! I am so excited for you and the topic of medieval literature sounds so intriguing! I'd love for you to occaisionally post about your studies and what your are learning etc. I think it's a real boost for all of us to hear about these kinds of accomplishments when we all understand what you also struggle with. It motivates me to keep trying myself! ~Roselover

Briar, I now I would buy one and sell them to family and friends. What other kind of help would you need. I could something that would be computer work as I have a laptop to use in my relciner. Let me know, Roselover

Hi everyone, Did you miss me? Well, it hasn't really been long enough for you to notice I was gone, but it feels like it's been months to me. I just got home from 5 days in the hospital. I woke up Tues eve with bad stomach cramps and by early morning we headed to the ER. A CAT scan showed a probable bowel blockage, so they immediately admitted me. I had barium tests of the stomach and small bowels and they concluded that it was a partial blockage possibly due to past abdomial surgeries. But in the meantime, the nausea and stomach pains I'd been having the past 6 weeks were addressed and I now know I do have delayed gastric emptying. So I am home, on a careful diet to get it back in control and on reglan and levisn as needed. I was treated sooooo well! I am so impressed with the many different doctors that saw me and their willingness to learn about POTS and dysautomia. Some had a little bit of knowledge and some none at all, but all of them listened to me. I also had a team of interns and I was able to teach them a lot about it as well. I really wished I had info brochures to give them. I keep meaning to make some to take places with me, but I haven't yet. Anyway, wanted to let all of my friends know where I've been and that I'm home recovering. This forum is so helpful in understanding this. OH!!!! And get this... I had a OT come in and talk about coping with chronic illness - not real helpful, BUT, they had just prescribed the two meds. I wanted so bad to search the forum to see others expereinces before I tried them. So, he brought in his computer, typed in POTSPLACE and I went onto the forum and read what some of you have said about the two meds. That was soooooo comforting! Talk to you all later!

Persephone, I don't completely know why, but your story has really touched my heart and I had to stop and wipe my eyes a few times as I read this. What a glorious night - oh what I wouldn't give to have a night like that again! Thank you so much for sharing it and please be sure to post some pictures on the face os dinet for us to see! Love Roselover

Thank you Hayley. I am glad she was able to go. I was just a little worried about her. ~Roselover

Sunfish, Thank you for your input. I think I realized all that in applying, but it is a good reminder. Actually, my BP doesn't usually drop that much and my heart rate does go up 30bpm or more. I was in a drug study last year for mestinon, but it was for pain in fibromyalgia. I've been watching the thread about the mestinon. I have a whole bottle left over from the study and am considering trying it again with my doctors direction of course. I figured with reading your expereince I wouldn't mind getting on the call list at Vanderbilt in case I do qualify for a study sometime. Thanks for the heads-up about the medical records. I hope we end up there at the same too - it would be fun to meet!!! Thank you again, ~Roselover

Persephone, Just wanted to check on you... haven't heard your voice chiming in for a while. I remember you had your graduation coming up and you had quite a disappointment from Oxford. Just hoping you hadn't fallen so far down the Pots hole that we were going to loose track of you. Just thinking about you, ~Roselover

Melissa, yeah... I kinda guessed that. It's just fun to think of an outlet... someplace where my crafts end up. Also, I'd like to support DINET. Well, maybe someday I'll really be up to overseeing an auction. I forgot to mention that I do most of my day living in a really comfy recliner. I have a memory foam pillow that I use behind my head or back when needed, but a good quality recliner is a must for me... I just have to get out of the bedroom. I often don't make it out until mid morning, but I like the change of scenery AND the change of position helps the muscle cramps a lot. I have a bookshelf set up next to my chair with my books and crafts on it, a candle for aroma therapy and a spot for my gatorade. Then I have a little table with my laptop. Once I sit down, I'm set... until I need the little girls room. ~Roselover