Roselover

MM- you are great! You give so much help to newcomers and then help them settle in and become helpers themselves. Thank you for your commitment and willingness to share your life and fingers with us. Keep on typin'! ~Roselover

Ernie, You made me laugh - you have a great sense of humor. Just wanted to add my "Good Luck" for your travels and this appointment. We'll be looking forward to hearing about it. ~Roselover

Beautiful, thanks for sharing! ~Roselover

Julie, Having had some procdures done recently, I can really feel for you. I just wanted to send you a BIG GENTLE HUG! Hoping your'e feeling a little better by now and the after effects are wearing down now. Love Roselover

Jessica, Good to hear everythings going well. I found that the jump from one child to two was harder than just one and harder than number three. I agree - it is not double the work - it's more!!!! ~Roselover

Hi everyone, I was scheduled to see a new endo yesterday because my thyroid has felt large for quite a while now. My husband and I weren't expecting much after our last 5 disappointments with doctors. But low and behold we found a jewel of a doc! She walked in and I told her that I had POTS. She said she was very familiar with it, but not an expert in it. I'd had another endo think he knew POTS, but it was actually Potts Disease so I corrected her and told her it wasn't Potts disease but P-O-T-S and she said "Yes I know" She explained how POTS crosses over with endo things so she had to be familiar with it. My husband and I looked at each other and laughed with relief!!! Anyway, she ran many of the adrenal tests I've been trying to get for over a year now, and said my thyroid is defineately enlarged. She pulled up the CT scan I had a few weeks ago in the hospital and looked at my adrenals. No tumors, but she couldn't be sure that they weren't shrinking. She is suspecting thyroid autoimmune disease, but won't know for sure until the blood work and ultrasound is done. She also wants to rule out all the adrenal possibilities. I gave her lots of things I printed from POTS place and she was glad to take them. We told her about our appointment with Grubb in January and she said she really wants to hear all about the appointment when we get back. What a surprise this was!!!! We finally put our expectations down and she surprised us by surpassing anything we could have imagined. Wanted to share my good fortune and news about the doc. If anyone has thyroid autoimmune I'd like to hear about that too. The ultrasound will rule out any growths and cancer. My sister had thyroid cancer so we have to check it out. TTFN ~Roselover

Dear Em, isn't it great how you bring out everyone's sense of humor? I love it. Today I told one of my kids not to be a "sour puss". All three looked at me and laughed and asked what a sour puss was.... I thought of you and your idiom's. You're never a sour puss even with your bumps! Love Roselover

Ernie, There is a woman named Joni Eareckson Tada who is severly disabled by an accident she had as a teenager. She speaks to thousands of people each year and she speaks from her wheelchair. If she needs to clear her throat, her husband walks up on stage and squeezes her stomach so she can cough. I have seen her speak and she as a great inspiration!!!! DON"T be afraid of your wheelchair if you need it. It will only make your message more powerful!!!! WOW - I am so excited for you!!!!! ~Roselover

You are all so special to me - thank you for your thoughts and prayers. Just a quick note to tell you it's NOT cancer! Hurray. Will write more later as I am so grogged out....slow as molassas in January... as my grandmother would say. Test went well, don't remember it, keep asking husband to review it each time I wake up. That's a good thing - I didn't really want to remember it. Love you all, ~Roselover

Hi Friends, Just wanted your prayers tomorrow. I'm having another endoscopy tomorrow. It's to do an ultrasound on a little lump they found in my stomach. They have told me that it's probably a begnin fiborous type nodule, but they have to rule out cancer. Just one more thing. It's alwyas one more thing with us isn't it? At least I'll get some IV fluids again! I also have an appointment with and endocrinologist to check out my thyroid and hopefully do a few tests on the adrenals. So you probably won't hear from me for a few days as I'll be pretty wiped out from these appointments. If there's any news to report, I'll be sure and get it to you. Well, thanks for your prayers and friendly thoughts. ~Roselover

Julia, Thanks for letting us know. Please convey our love to her and tell her we have missed her. I was wondering about her lately!!! ~Roselover

Emily, dear Emily... you are the sweetest thing on this board! Your post was well stated and I can't imagine anyone being offended by it! If I was Ernie, I would be very glad you shared your thoughts with me because I like to take all sides into consideration for my decisions. Now, tonight you'd better get some sleep! Jenn, I sent you a personal message. It would be great if we were able to meet in Ohio!!! Dr. Grubb ought to arrange a POTSPLACE week were we all get our appointments together!! ~Roselover

Oh Jenn, Wasn't this your second visit to Mayo? Wasn't this your long awaited visit with Dr. Low? OK maybe we shouldn't be naming names... but I'm so sorry. I know you debated whether you should even go back or not. I was turned down by Dr. Low because he was too busy. My doc tried to call him for weeks - even left her home phone for him and never heard from him. Thus, I'm heading to see Dr. Grubb instead and fell really good about from you and all the others who have shared their experiences. Sorry you had to go through this, but thank you so much for being willing to open your life and share with us! ~Roselover

I'm sorry you are having to face this. I can imagine it must be very scary. You'll be in my prayers. ~Roselover

Morgan, I'm a little late here too. I read all your posts here and I am amazed at the doctor you have stumbled onto. I think I dream of tripping and finding a doctor who can talk intelligently about ans stuff!!! I sure hope he has some help for you! Thinking of you, ~Roselover

Persephone, Dr. Grubb is accepting new patients, because I just got an appointment with him. If you schedule now it will be Jan/Feb for an appointment. They want you to have a doctor's referral so even a primary can refer you. But they have to call. That might be hard from UK - maybe you could call them and ask about what they would require for you to go? His # is on the potsplace website under physicians. Then there is Vanderbilt - you can read Sunfish's expereince there - it's research. There's Mayo with Dr. Low who is hard to get into, but you might give that a try. Go to the Mayo clinic website and go to Neurology and then he's listed under specialists and there's pages that tell about referrals with phone numbers etc. There's also Dr. Faoud at Cleveland Clinic. You could do a search here on her and read a few things. I've been researching this too so that's why I have all this info right now. After looking at it all, I am going with Dr. Grubb and still considering Vanderbilt if they accept me - though I'm not sure I'm up to that two week stay thing. Good luck. Roselover

Traci, I suggest you do some research and reading on this. On Pots place it clearly discusses the difference between low BP and HR increases. POTS is not a drop in blood pressure. It is an increase in HR more than 25 bpm. I have seen many doctors who are more familiar with Neurally Mediated Hypotenstion (dropping BP) and though they think they understnd, are really unfamliar with POTS. It's taken me a while to be able to explain the diffence to them, but I hope you'll do some reading so you can understand the difference too. Begin at Potsplace and I think it'll help. PS: where is the doctor that you saw? ~Roselover

LOL - ROF (that's laughing out lout - rolling on floor). Emily - I REMEMBER THE BABOON THING! My uncle used to say it to me when I was a kid!!!!!! What great memories!!! Corina, I will send you some pics as soon as I scan them OK? Thank you for asking!!!! Gotta go - but will add more later. Love Roselover

Ernie, I am, finally, scheduled to see Dr. Grubb - next January. Please let me know how your appointment goes. I really hope your trip is not to strenuous. I travel from the West Coast to see him, so it'll be a big trip for me too. Wishing you the best! (And if you find that pill to make you twenty, would you send me a 1/2? I'd like to be 30 again - ) ~Roselover

Great topic Persephone... and I've wondered about your name and many others! I use Roselover because... you guessed it... I love roses! I over 50 rose bushes and I have won trophies at local rose shows. I think they've been my favorite flower ever since my mom bought me a Peace rose when I was a little girl. It was in a pot on our patio and I was in charge of taking care of it. Been hooked ever since. I don't ususally sign my real name ususally because we often suggest Potsplace to people who want to understand and I was afraid some might check out the forum and I wanted some privacy. Not from you guys, but from family and the many people my husband works with. Love this topic - love this forum!!!! ~Roselover

Oh Emily, you always make me smile! I love your "ramblings"!!! You should always write at night - (hee hee) I think it was ariella who posted a topic a while ago about postiive things coming out of our illness. When she posted it I couldn't even bring myself to verbalize anything. Recently, thought I added something about the "being" concept. I didn't think I could ever change, which meant I could never enjoy a Potsy life. But I am finding that I am changing and I am learning to enjoy life in a different way. I am amazed that this is happening to me. The only problem is that it has also made me more aware of people and increased my love for all the special people in my life and then I starte getting all emotional and mushy and people wonder why I keep telling them I love them so much. I'm understand how hard it is to give up things that you love, like your sax. You have a great plan though and I bet you end up hearing that kid who gets your sax play someday. I have a boy who is just heading into teen years and he has really begun to get good at guitar and drums. He really wanted an electric guitar. Of course, I wasn't so sure but we couldn't afford it anyway. Then, this young man my husband and I were counseling (we do premarital counseling for engaged couples) heard about my son wanting an electric guitar and he told him he would give him one. It turns out he had an old one that came with one string attached... when my son was done with it, he had to pass it on to someone else who was just starting out on electric guitar! Isn't that cool? Maybe you could do the same with your sax??? What a way to pass on a love for music! OK... I ramble in the morning when I've had my tea... so I'll stop now. Don't know the baboons thing you'll have to explain... Corina???? TTFN. Roselover

Ernie!!! You're such an inspiration!! I've been thinking the same thing... I need some exercise and I've thought about the recumbent bike too. When I was in the hospital a few weeks ago, an OT gave me a catalouge with lots of things in it, but one was a pedaling machine that I thought could be attached to an incline board and I could lay on the ground and pedal. It was cheaper than a recumbent bike. They also gave me some therabands and I've been working my muscles right from my recliner! That's making a big difference! Keep us updated on how it goes! ~Roselover

I know there was another thread on Raynaud's, but I wanted to share a strange expereince I had last night and I don't really know why it happened or if it is even related to Raynaud's. Yesterday was in the 90's and I was begining to not feel so good so my husband got me a hot water bottle filled with cold water. It helped cool me down, but when I put it on my legs something really strange happened. I laid it on my shins only for a few minutes... my feet began to throb like they were freezing. I took it off and my legs and feet kept throbbing. I even had to put a blanket over my legs to warm them up and stop the pain. I think my big toenails turned a little purple. Isn't this strange? I thought it would help constrict the veins and help me feel better in the heat, but that's not what happened. It wasn't ice just cold water and I hadn't had it on there longer than 2 minutes!!! Any ideas???? ~Roselover

Melissa, I am starting with selling books on ebay. They are books I've used for homeschooling and highly desired by others so they are selling well so far. I just hope I did OK on estimating shipping cost! If it goes well, I might try to do some other things from around the house that I've been intending to get rid of. I just don't have the energy for a garage sale! Maybe I'll start to sell my jewlery on ebay!!! Hey... how about medic alert bracelets - hee hee. ~Roselover

How great to have you back Corina! So glad you had such a great time. I hope you'll post some pictures. ~Roselover