Roselover

Sunfish, Your journal motivated me to send in my application for the inpatient clinic. I did the measurements for the BP/HR and today at 8 min standing I began to sweat and felt nauseous and very close to passing out, so I measured my BP and it was 64/50 with HR 93... this is on atenolol. Think I will qualify???? Thanks for giving us so much info. I really really appreciate it! I'll let you know if I end up heading to TN too. ~Roselover

This is a great topic and lots of ideas! I've had a headache going for days now and haven't been able to respond until now. Pooh - thank you so much for those web sites!!!! I too love to color. I prefer colored pencils because it doens't make quite as much mess as crayons, but then, you do have to sharpen them so I guees it's a toss up. I enjoy knitting, but I too have found that patterns are hard to follow and my memory makes it hard too. I am currently knitting a blanket because I get cold a lot in the winter. I have my basket next to my chair and can pick it up anytime I feel like knitting. I love the scarves too. I also have a laptop computer (a gift from my dad as a coping mechanism) I have a few computer games I play - one is a horse riding comeptition. But as for crafts, I have a clip art program and I can make cards, bookmarks etc on it. I guess I didn't really have any unique suggestions - BUT I did have an idea... With all of us fun crafty people, maybe we could have an auction as a fundraiser. I'll have to think this through and see if it is really reasonable for me to volunteer to do run it. Maybe it's too much work, but I thought we might have a lot of beautiful stuff to donate! OK - going to the bead website that Nina posted. I'm afraid I'm going to get hooked on beads.... Cheers! ~Roselover

Yep... I can! They are called Thermotabs and I get them at immune support . Just type in Thermotabs in the search box. They are very reliable and you can get an even better price if you want to arrange and regular delivery of them. I have something delivered on a regular basis and I can change the delivery time when I need too. Hope this helps! ~Roselover

Sunfish and Emily, Thanks for the juice info. I'm getting weaker with not eating and starting to lose weight. That's OK for now as I need to lose 10 lbs, but not eating isn't the best way to do this. And I'm getting weak...oh I already said that... not thinking too well either I guess. Sunfish - I'm kinda glad you hadn't posted about your reaction to the sedation too, although I've had a lot of anesthesia and do OK, but I always know as I am going under that there's a possibility that this time won't be OK. It's always nice to wake up and find that everything went OK with it. Again, thank you for your advice and support. ~Roselover

Sunfish, Thank you for taking the time to write all of this out! I read the whole thing!!! I'll have my husband read it too because we are trying to decide what to pursue for further help. I'd applied to Mayo and Dr. Low but was rejected because of the number of people who want to be seen. My docs are making calls to make sure they can't get me in, but Vanderbilt was someplace else we have seriously considered and I even have the application for the inpatient study that I've considered sending in. It was really helpful to get such a consise rundown of how it wen for you. Thank you! ~Roselover

Oh Ernie, you make me laugh!!! But you are so right! My answer is too many too! And my biggest frustration is that they don't work together even though they often overlapp!!!! Cardio Neuro Infectious Disease Rheum Gi Family Practice Done with Gyn (had hysterectomy last Nov)... Haven't found a reliable endo... ~Roselover

Hi Emily, I've waited a while to post on this subject because I really didn't know what to say. I just wanted to give you a big hug. I don't really have an "anniversary" because my symptoms crept up on me, although I do remember well when the boughts of unusual fatigue started and that was 3 years ago this July. One of the questions I've struggled with - as I get sicker and sicker- is who am I? I realized how much I defined who I was by what I did. As I lose my activities I have often felt like I have lost myself. But that isn't true. I am still adventerous, spunky, competetive, friendly and huggy. You my dear Emily are still a sparkling light - a dancing light. As I said in the other post, you still sparkle through your sick body. You will never lose who you really are no matter how much activity you lose. The balance I am trying to find is to grieve my losses, but rejoice in the things I can never lose. I hope you will be able to do both too. With love, Roselover

I've only been on this forum for a few months, but already I feel like I know so many of you, largely from reading posts and enjoying how each individual shares and encourages others. I have noticed too since the "conflict" that many of you are much more cautious in your posts and it makes it much harder to get to know you. I think this caution though, shows a lot of respect and thankfulness for Michelle and all her hard work as well as a love and need for this forum. I too have a wonderfully supportive family and a large church full of people who care about me and my family, but no one understands what it is to live with this like all of you do. There is a deep connection in sharing the same kind of symptoms and daily struggles even when the severity varies among us. But there also needs to be familiarity with each other to enjoy the encouragement we get. I would heartly agree with Tearose. I think we should view the "rules" as boundaries to protect us and our friendships. I think people like you Emily have great intentions to keep this forum appropriate. You respect others and value getting to know them. When we respect each other, we can express differences without hurting. I try to come to the forum with full expectations that we are all different people with different backgrounds, religions, race and even sex. And I enjoy getting to know each and every one of you. I figure that Michelle is doing her best to keep the forum that way and that if at anytime she should need to send me a personal message about editing a post, I need to view it as her caring for us as a whole. I think that any of us who really care about the forum could take her input that way because we want what is best for each other! Emily, I think your forum name suits you perfectly. You are like a dancing light - I can always see the twinkle in your eye when I read your posts. I'm sure Michelle is sad that you feel so unsure about posting and I hope as time goes on you feel that our community has been rebuilt and is even safer and you can let your light dance freely again! ~Roselover

Thank you so much Morgan! What wonderful information and advice. I have taken in to heart and will hang in there with the Protonix. You're right about the bacteria they were looking for, I just couldn't remember what it was called. I think they were backed and a little behind and trying to get all their appointments done yesterday. Maybe that's why they couldn't tell me right away? Thank you for the bood test info. Have you ever had diarreaha with the Protonix? Thank soooooo much for your note!!! ~Roselover

Well, I'm thinking a little better this morning, but I feel like I have been run over by a truck - sore andn exhausted and I still can't eat. Here's what they found: Gastritis with slight bleeding Gastric polyps Nodule in stomach They started me on Protonix and have biospied the polyps and nodule. I was told they may find a bacterial infection with the biopsy and then they will treat that too. I am supposed to go back in four weeks to see if the protonix has helped and then I may need another endoscopy with ultrasound to look at the polyps and a barium swallow for delayed gastric emptying. Four weeks seems to long when I can't eat, but maybe it will improve. This morning I ate a few spoonfuls of baby rice cereal and felt full and even felt reflux right away. Now my stomach hurts. I guess I just need to wait and see what happens. Thank you all for caring and if anyone has input, I'd be happy to hear it! ~Roselover

Hi everyone, Thank you so much for your prayers. It went very smoothly. I am home, sleepy and still not able to eat, but the procedure was MUCH easier than I imagined it to be. They found a few things, I'll post tomorrow cause I can hardly think tonight. They did some biospies and I may have to go back for another one with ultrasound. May also do a barium test. We'll see. For now, I'm starting on Protonix. Ok, not thinking well, but wanted to thank you ALL! I'll be on the team to encourage the next person that it's not as hard as it sounds. Bet I'll sleep well tonight! ~Roselover

Thank you so much everyone. You have helped calm my fears. I'll let you know how it goes. ~Roselover

Hi everyone. I'm having an endoscopy tomorrow afternoon. I would appreciate all of your good thoughts and prayers. I am feeling very apprehensive about it. I have talked to the docs office and I will be able to get IV fluids so that is very good. I also told them I couldn't have any numbing angent with epinephrine in it. The nurse aske me why and acted very interested in autonomic disorders and admitted to being unfamiliar with. I'll take some info with me. I am having great difficulty eating anything. Food often sticks in my throat and my stomach throbs after eating (even with Ensure). I have had numbness on my tongue for quite awhile and I wonder if it is connected. I have also had acid reflux for years ... well enough guessing - I just have to wait to see what the test shows. Thank you for your support and if anyone has advice on getting through this procedure I'd appreciate it. ~Roselover

Thank you everyone for your advice. My husband did buy me some Ensure and I was able to drink one today. I've tried pudding today and it immediately caused pain. Hmmmm... Well, I see a GI on Friday and have an endocrospocy (sp?). I am really dreading that - never had one, but it doesn't sound fun. Also, going without fluid for four hours before it worries me. I wonder if they'll give me an IV. I'm trying not to worry cause I know it'll just make things worse... but it's hard not to isn't it? ~Roselover

I have a question for all of you who have motility problems. I haven't been diagnosed yet, but in the last two weeks, I can't eat even a small meal without stomach problems. I will be seeing a GI this week. While I wait, I was wondering if anyone could tell me about the best foods for easy digesting. I only seem to be able to take in liquids and saltine crackers (a few at a time). Is there anything that you know I should try to eat to keep my strength up? I'm getting weaker and sicker from not eating and I wondered if things like pudding or fruit smoothies or something else might digest easily and give me a little nourishment. Thank you for helping me. ~Roselover

Me too... wanting hear lots more. Did you begin in the Outpatient Clinic? What testing did they do? Who did you see and how did you like the doctors? Thanks for sharing Sunfish! ~Roselover

Persephone, I am so glad to hear your Grandfather is doing better!!!!! I have thought of you often in the last few days. I'm amazed at how much I care about all of you and I've never even met you! When I was on florinef, I had to push hard to get tested for postassium. Even the doc who put me on it just brushed that aside when I asked him directly about potassium loss. He told me to eat a banana each day. I hate bananas! I got to where I would feel like I would barf if I took another bite. So I researched other foods high in it and found several other foods high in potassium. My favorites were avacados, cantaloupe and Honeydew melon. If you'd like the whole list I found I could send it to you. Thank you for keeping us updated on your Grandfather, ~Roselover

I have a battery operated Mabis BP monitor but it also records my heart rate. When I first got my diagnosis it was really helpful in understanding what was happening with certain symptoms, but I don't use it near as often now. Now I use it when I am going to have to report symptoms to a doctor or when I am changing medications. ~Roselover

Megan and KRKTS, I'm just about to try Provogil too. I am having some stomach probs so am waiting until after seeing the GI to start it. Glad to hear it helps you a little Megan. I'd like to know how much you have found helpful too. Coffe also helps me, but hard on my stomach right now. I also found chocolate cover coffee beans helpful. I'd just pop a few when the "sleepies' caught up with me. However, sleeping isn't my worst fatigue. I just feel fatigued like I have had the flu or something. Weak and limited strength. Wonder if the Provogil will help this? ~Roselover

Thank you Emily! I love reading your posts - you so often make me smile! And your warm thoughts are very welcome right now! I'm curious - what do you knit? I've done a few sweaters, but I have a hard time finding good patterns that really turn out the size they say - even when my gauge is right. Do you have any suggestions on patterns? Hope you can sleep again tonight. Glad you got a few last night. ~Roselover BTW: I have a little furry friend too. His name is Taran. Actually, he's my sons dog, but he's my lap dog. He's a malt-poo and he turned 1 in March. He was born one day before my B-day!

Corina, you too have been an inspiration to me. I hadn't been reading the forum long when you wrote about driving your electric cart down to the garden center. I will always picture you driving home with your basket overloaded with flowers!!! BTW have you and Em talked about the idom "bite the bullet" yet? Ariella, I agree about taking mental health breaks. I use my painting for this. It gets my mind of myself and my decisions. My biggest problem is that I have hardly been able to get any testing done connected with my POTS - only TTT. Everything else I have had was done incorrectly or was inconclusive. I guess that leaves me wondering about all the possibilities. I haven't even had adrenal function tested or adrenal tumors ruled out. Ask Briarrose... it's really hard to find docs here to do this in the Northwest. Oh.... but I can't tell you all how helpful this forum is and how glad I am to have found you. But I guess I don't need to tell you... you know don't you. Sending rose bouquets to you all, Love Roselover

This is a great question! I hope we get some good suggestions. Does anyone know if you can take your own wheelchair with you on the airlines? I'm sorry I don't have input, but I look forward to hearing from others. ~Roselover

Thank you so much Ernie. You were actually my inspiration to "bite the bullet" and get a wheelchair so I wouldn't have to miss out so much. Your excitement and enjoyment of getting out that first week you got yours made me feel like I was selling myself short. Thank you. I don't know if my POTS is genetic or not, but I have a very strong suspicion that it is. When my mom was about 40, she came down with mysterious symptoms of tiredness, dizziness, muscle weakness, numbness and tingling and heart racing. She went the direction of MS, but has finally admitted to me that even with all of the MRI's she's had, MS was never found. The Neurologist told her that there was nothing more he could do and he didn't need to see her anymore. She's clung to her MS diagnosis because she doesn't have anything else. On top of that, my sister is now have strange symptoms and doctors can't find what is wrong. She has pain in her stomach, but also BP that spikes, and tachycardia at strange times. I am begining to think we have something hereditary going on. Thank you for your encourgement Ernie! ~Roselover

Thank you all for you kind words. Yesterday I picked up my first wheelchair. It's a lightweight one that folds to put in the car and the legs rests lift so I can have my feet up. Then my husband took me to the mall to pick up my trophy and see the roses. He pushed me around the show and the trophy I recieved was a beatiful pair of antique looking silver candlesticks. I've thought a lot about what all of you have said to me. Especially you Morgan. I really appreciate all of your input. I guess I have held on to the hope that if I could find the cause of my POTS, I could find some ways to treat it. It's hard for me to let go of this when there are possible causes that have not been ruled out. And I am a person who wants to know how and why things are happening. But we can't always know can we? Buying the wheelchair was like admitting that I just have to live this way. I think it was even harder on my husband than on me. And yet, I was so worn out, I couldn't have seen the roses and picked up my trophy without it. The big question - the thing that tears me up - is when do I give up the search for things that might give me more life and function to just live the life I have been given? Morgan, I don't think people ask me so much "why" as they just seem to expect that God will heal me. I feel like I disappoint people if I give up searching for answers. And yet, I don't believe that healing is God's only answer for me. Your words really encouraged me in my thinking and in loving the life that God has given me. Even if it means going to the rose show in a wheelchair! I'm still considering what I should do. I am leaning toward calling Dr. Grubb. Instead of looking for all the answers, just hoping that he will give guidance into living my life to the fullest. Thank you all for being here and sharing the ups and downs of the POTS Pioneer life. ~Roselover

Persephone, How is your Papa today? My heart sunk as I read your posts today. (Sorry I missed them yesterday). Wish some of us could be there with you, but please know we are with you in spirit. Let us know how he is. ~Roselover