Guest tearose Posted January 27, 2005 Report Share Posted January 27, 2005 We sometimes wonder if you are out there and just think we don't miss you...but we do!You may be a reader, a newbie, a veteran, but it is good you popped on to read and sometime when you are up to it please say hello!Since dysautonomia can suddenly rob us of our strength and we can slip into that downward hole rather quickly, it is important that you know you are not alone! (for those who are there)Today, I especially want to say hello to: Geneva, hope you have recovered from your last test and are okay.Jessica, hope the nausea has finally gone and that you are managing well.Emily, you keep healing and know you are missed.kite07 (both of you) we need your exercise input to get our bodies in shape for spring.mindylee, how are you?Mary, I keep Marissa in my prayers.EarthMother, hope you are enjoying more musical times with your daughter.Merrill, you are too quiet. Ginger, countdown to Mayo...Good wishes to all of you, tearoseplease add your missing peeps too! Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted January 27, 2005 Report Share Posted January 27, 2005 Thanks Tearose!!You're so sweet!! Marissa has been hanging in. She is such a little trooper!! I don't know how she manages sometimes...I had a rough appt Tuesday with my pain mgmt dr, so your cheery hello today was just what I needed!! My TENS unit was NOT there as promised!!! I was SO angry!! I waited for 2 days for a return call from the company to find out why not! Basically, they had NO idea!! They said they paperwork was all together and it should have shipped out.... Grrrrr. My dr switched around all my meds, forgot one of my scripts and said my fibro is the worst she's ever seen it. (thanks!! ) I finally got up the courage to ask about the handicapped parking think and she had the nerve to tell me that my diagnoses would not make me eligible. She suggested I ask my neuro and get one for migraines!!!!! I picked my jaw up from the floor and left in shock and almost cried.Oh... sorry for the vent!! It kind of slipped out!! I wanted to say hi and I miss you to :Emily- are you feeling better?Danelle- have you heard anything from SSI?And all my friends whom names elude me as I'm having a POTsie day!!Love to all!! Sorry for the vent in the middle!! Quote Link to comment Share on other sites More sharing options...
Merrill Posted January 27, 2005 Report Share Posted January 27, 2005 Hi, guys. Missing everyone too ... Been down and out with a bad stomach flu the past couple days. Ugh. Sooo tired! Found out a goofy way that beta blockers work: missed a dose b/c I hadn't eaten in a gazillion hours (and direx say take w/food and I was not about to do that before I was ready ...) Some 40 hours later I was ready to try a little chicken soup ... and my heart went nutso standing at the stove. Very very intense! So I ate, took a pill, rested some more and then stood for a while later doing dishes etc and no ferocious/fast pounding. Woo hoo.Anyway, on the mend except for the exhaustion part ...So hello out there ...And here's a little hello to Melach and Herdswoman, whose humor I miss... Geneva, how was that colonoscopy? R U OK? Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted January 27, 2005 Report Share Posted January 27, 2005 Merrill-You should NEVER skip a dose of beta blockers (or many other meds for that matter!). Many meds work such that it builds up a dosage in your system and it needs to maintain a constant level in your system. Even a slight drop screws the whole thing up. "Eat with food" usually means one of 2 things: 1) you could get a stomachache if you don't (which you already had) or 2) doing so long term could do permanent damage. So, if you have to do it once in a great while when you're sick, don't sweat it!! Take the meds and keep your levels up!! The benefits outweigh the risks!!! Just my .02 and learning from my friendly neigborhood pharmacist!!Hope you're feeling better and on the mend now!! Quote Link to comment Share on other sites More sharing options...
Merrill Posted January 27, 2005 Report Share Posted January 27, 2005 Thanks for your concern, Mary ... I had asked the pharmacist about the take w/food directive, and he said "to prevent stomach upset." A couple weeks ago, I asked my cardio whether it was true that beta blockers could be taken on an "as needed" basis (I had heard several people on this very forum say that this is how they take the drug), he said "yes." And that I could stop if/when I wanted to.(Actually, this was the cardiology fellow who told me this--the one who led me toward autonomic testing and original pots diagnosis--not the guy who said IST and put me on the beta blockers to begin with.) So gee, I dunno. I know what you're saying about not missing doses (and I feel likewise--esp. when it comes to antibiotics; I'm not all that familiar with other medications!) I guess I should double check the info I was given!Can I go to sleep now? My desktop isn't nearly as comfy as my new pillow! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 27, 2005 Report Share Posted January 27, 2005 Get better soon Merrill! Tummy troubles can wash you out! Keep drinking fluids! At least you could watch some tv and rest your brain for a bit. I don't know anything about the BB's. Did you phone the doctor's office and get information? You know Mary is gonna keep tabs on you now!Glad to hear Marissa is hanging in there Mary! That is one strong willed/spirited little girl! I guess you'll have to fuss a bit more for the parking tag. I think this is one battle you should be able to win without too much more trouble. Just keep your chin up and remind the next doctor how having the parking tag will make life more manageable. Oh, Merrill, yes, herdswoman has this sense of humor that always leaves me ready to blaze a new trail!!! Where is she?Hello out there everyone! tearose Quote Link to comment Share on other sites More sharing options...
EarthMother Posted January 28, 2005 Report Share Posted January 28, 2005 Dear Tearose,How kind and compassionate you are. My sense is you will never know the depth that you touch each of us. Sometimes when I am having a really bad POTS moment, I imagine the lovely image of the rose and think what would Tearose say about this? You lift my spirits. I am so very grateful.As for music ... funny you mention this. My son (age 11) just asked to record one of my pieces, with a techno-hip beat ofcourse. So I worked on it (slowly as best my body could manage) and last weekend posted his version of my song BELIEVE. It is a really nice inspirational piece.Enjoy.http://www.coolkarma.com/mp3/Believe-2005.MP3Good luck to all on your healing journey.EM Quote Link to comment Share on other sites More sharing options...
ginger Posted January 28, 2005 Report Share Posted January 28, 2005 Hi Tea!Oh yes, counting down... 11 days! So thoughtful of you to remember and mention! I talked to Mayo yesterday and they have already scheduled me for autonomic lab tests--didn't say which ones-- for Monday 7th afternoon. And have instructions for stopping certain drugs at least 48 hours before. I see Dr. Fealy in the am, tests pm and urology specialist Tues am. I think they have even more stuff scheduled from the tone of the nurse's voice, but I didn't ask. Getting really anxious as it is! Working on last minute preparations. So thankful for the many travel tips from everyone here. And the tips for visiting Mayo.Big hugs to all!Ginger Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 28, 2005 Report Share Posted January 28, 2005 OH TEA!!!i am so glad that i saw that post! and also, happy ONE YEAR ON DINET TO YOU!i agree with earthmother one hundred percent...YOU BLESS THIS SITE MORE THAN YOU WILL EVER KNOW.okay, well, i gotta be super-short...b/c i feel like you know what! i had noooooo idea recovery was gonna be so hard and that POTS would go into full tilt again. ugh.i'm having a hard time, i'll admit it, but i am seeing blessings in it all too...all too much to share now, but boy do i have stories to tell!i just wanted to check in to say that I MISS YOU ALL SOOOO MUCH!!! it is so hard to be too pooped and miserable to even read your posts.I AM NOT GOING TO NAME NAMES...YOU KNOW WHO YOU ARE...BUT THE BIGGEST REASON I LOGGED ON TONIGHT IS TO SAY THANK YOU!!!!! I AM SERIOUS WHEN I SAY THAT YOU WORDS, CALLS, CARDS, EVERY THING THAT YOU HAVE ALL DONE FOR ME LIFTS ME UP EVERY DAY. I JUST READ THEM OVER AND OVER AGAIN WHEN I FEEL LIKE I CAN'T DO THIS!can i tell you all one of the hardest things about this whole experience (which means it is the biggest lesson to learn)? learning to RECEIVE YOUR LOVE and the love of my family and friends without being able to give back right now. it is soo very hard for me. and i know you all can understand that. also, real quick...i was soooo calm for surgery i didn't even need the sedative! all thanks to you all! it was afterwards that all you know what broke loose.anyone else have a pots flare after surgery?AND ONE MORE THING FROM THE GREEN GIRL HERE...THE SURGEON SAID THAT MY GALLBLADDER WAS IN REALLY BAD SHAPE AND THAT THIS HAS BEEN GOING ON FOR QUITE SOME TIME. IT WAS INFLAMED, HARD TO GET OUT AND HAD CREATED SCAR TISSUE ON THE BILE DUCT AND EVEN ON THE ARTERY (WHICH HE SCRAPED OFF).I COULD NOT HAVE DONE THIS WITHOUT YOU ALL...THIS SITE IS A LIFESAVER IN SO MANY WAYS! PLEASE KNOW THAT ALTHOUGH I AM NOT WRITING I KEEPING YOU ALL IN MY HEART ALWAYS...YOU ALL LIFT ME UP AND I HOPE TO BE BACK SOON TO GIVE JUST A LITTLE OF WHAT YOU HAVE GIVEN ME BACK. your favorite celery green girl...who now needs a new favorite color!emily Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 28, 2005 Report Share Posted January 28, 2005 Em, I'm glad to see you're back! We've missed you. Keep getting better , gentle hugs, Nina Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 28, 2005 Report Share Posted January 28, 2005 Earthmother...a joy to hear from you. Thank you for the gift of words and images. And music!Ginger, only 11 days till Mayo, now we know what you are busy doing. Please don't be anxious. Turn that energy into excitement and determination. Be excited that you are doing this for yourself and be determined to get those answers!!!Emily, emily who? It did my heart good to see your post. Ya know, little sister, we do want and need you back but you are worth waiting for! Heal well. Rest lots.Nina, go take time off...Be well everyone, warm hugs to all, tearose Quote Link to comment Share on other sites More sharing options...
calypso Posted January 28, 2005 Report Share Posted January 28, 2005 Emily,So glad that it turned out to be a good idea to take out the gallbladder ... it's never good to remove organs if there's nothing wrong with them, but of course you often can't know that until they're already removed.Hope you heal quickly and are comfortable.Amy Quote Link to comment Share on other sites More sharing options...
mindylee1 Posted January 28, 2005 Report Share Posted January 28, 2005 Tea Rose, Thank you so much for your always encouraging words to all of us. We are switching internet providers so will be a month until we have service again. I will try to get to my mothers to use the computer. As far as myself, I returned home from Clevelanc Clinic last week. Some good, some bad. The good part is that they really take such good care of you there. My doctor - Dr. Stillman was always by my side. They played around with my meds. Took me off florinef. Sent me home with a heart monitor for a month. It is so annoying but everytime I have a spell I just press record. I guess my heart rate gets pretty low at times. So they may want to do a pacemaker? I havent really done any research on that yet. The bad news is that they found another blood clot in my leg. They have done all of the necessary bloodwork and I am not prone to clotting. So why is this happening?? I had them puzzled. I have so much pain in that leg and there is reeally not much they can do for it. I refuse narcotics, I don't need to be down more than I am..ya know. With being on the coummidin there are only so many medication options. I really do wonder if this all could be related to the pots in some way. They just are not sure. Thank you for your support.Nina and Emily, take time to heal. All of our thoughts and healing wishes are with you. Mindy Quote Link to comment Share on other sites More sharing options...
ethansmom Posted January 28, 2005 Report Share Posted January 28, 2005 Tearose-You are too sweet! It's nice to know that when we are missing for a while that we will still be remembered, thought about, and missed. I always hope when I don't hear from people for a long time, that they are feeling better and not worse. That is the case with me now...the nausea and fatigue are SO much better that I am super busy trying to catch up with school, e-Bay selling, housecleaning, bills, and life in general. Most of all I am trying to make up for lost time with Ethan, the poor little guy has been sitting on the couch by my side for 4 months. BUT this week we went to the zoo for the first time, and the park...and we picked oranges off our tree...Florida is gorgeous in the winter (usually around 70 degrees, breezy and sunny ). I am so happy to be able to eat & sleep normally again, and I started back on my beta blocker a few weeks ago which has helped a lot with the fatigue and tachycardia. I was able to walk around the zoo for 6 hours- yes, SIX!! Only when I am pregnant is that possible, and I loved every minute. I was so afraid I'd miss Ethan's first zoo trip because of POTS.Emily- I am very happy that we heard from you. And even happier that your gallbladder is outta there It's very normal to have bad flare-ups after surgery- which is why most of us avoid the optional stuff, lol. Your case was unfortunately very neccesary, so I am wishing you a swift recovery and healthy days ahead!!!!! I had minor surgery on my ankle last year and it sent me into my worst POTS flare since I first got sick, for about 3-4 days to a week. Ugghhh! Everyone else- I am sorry I haven't been keeping up with your stories, but I hope that everyone is feeling as healthy as they can, and looking forward to Spring when we usually feel our best! I am going to try and get better about posting. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 28, 2005 Report Share Posted January 28, 2005 Good to hear from you Mindy, I know you must continue to deal with this new blood clot challenge and now you have that monitor too! Start doing more homework on the pacemaker issue. As you know it may or may not "fix" your problem so just be sure you make educated choices. If you are going to go ahead with a pacemaker, than become an expert in the "style" choices out there! For example, a variable rate versus a steady rate...take this time and be your own best advocate!Jessica, also wonderful to picture you preggo and at the zoo with ethan! What a banner day! Hope you took many mental pictures to recall! Time is passing quickly now. Aren't you in your second trimester? I forget, do you know if it is a boy or girl or are you going to be surprised?Don't fret that you don't hang out here as much, it is a good sign in my opinion...that you are able to move your body to do things other than just type! We are all glad to share in your good health and strength!Kristinp29, take it easy little one as you get back into your groove with the new semester! Since you have Fridays off try to keep up with your reading and assignments! And for pity sakes, do not burn the candle at both ends and party too hardy! Slow and steady! I am so happy that you have made it back to school! You should be proud of yourself too! motherly hugs, to you!Louby from London, how are you? Hope everyone does one special thing for themselves today! I'm going to treat myself to some sweet egg bread!I'm sending you all a cyber loaf!warm regards, tearose Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 28, 2005 Report Share Posted January 28, 2005 Oh, I keep wanting to check up on Amy/calypso...what is going on with your muscles? Are you gaining any strength? Sending you loads of muscle building strength, spinach and protein!warmly, tearose Quote Link to comment Share on other sites More sharing options...
calypso Posted January 28, 2005 Report Share Posted January 28, 2005 Tearose,How sweet of you to ask about me. I am the same, but I do have some news regarding a recent appt. that I will post about in a separate topic.I am doing my best to get strong -- well, I am not lifting weights as much as I should, but I am carrying around an 18-pound toddler most days. I am buying an elliptical trainer in the next couple weeks and am hoping that will help motivate me to get into better physical shape.Thanks for asking; it feels good to know someone out there cares!Amy Quote Link to comment Share on other sites More sharing options...
dream02 Posted January 29, 2005 Report Share Posted January 29, 2005 Tearose,You are too sweet! All of your posts are so encouraging to everyone. Even when I don't feel up to posting just reading everyone elses posts is a big help to me. Wishing you the best!Denise Quote Link to comment Share on other sites More sharing options...
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