funnyfrog

Hi Sue - After 3 years, I went off Florinef on May 3rd,2005. Most normal people would wean themselves, not me. I couldn't take looking in the mirror one more day and look like the bloated Pillsdury Doe Man and so I woke up that morning and said I refuse to take my 1/2 pill of Florinef any more and thats it - Well, for 3 weeks, I had the worst headaches you can imagine, dizzy spells worse than my mormal ones and for about 2 days I was bedridden. After that, I lived. Now, I am not suggesting that you do what I did, but I look better now, lost water weight and I don't feel much different these days and can't tell the difference from when I was on Florinef to not. I am on 4 other meds though - I went for bloodwork last week, my numbers are all good and my cholesterol which had been running high the entire time I was on florinef went down to a normal # of 188 now, coincidence?-I think not. Also, another reason that I decided I had to come off the Florinef was that it was ruining my teeth - I have been undergoing dental work for the past 5 months-2 root canals, 3 cavities and I think that the steroid effected my mouth as a side effect, just my personal opinion though. I want to note here that my doctor originally was dead set against me going off the Florinef and so I took matters into my own hands. I don't recommend this for anyone, but I am glad that it worked for me. Good luck!!!!!!!! Beth

Funnyfrog - I love making people laugh and am pretty positive and always cracking jokes and its hard to take me seriously so thats where the funny part came in, and Kermit the Frog is my favorite Muppet Character of all time and I have a soft spot for all things Kermit so thats where Frog came from and thats how I came up with Funnyfrog. Have a great night, ribbit, ribbit

GoldiceDance, I am sorry to hear of your diagnosis of breast cancer and wish you all the best fighting this disease. Take one day at a time and know that you have plenty of support from all of us here, as well as from your family and friends. I will keep you in my thoughts. Beth

Thinking of both you and Jeff often and praying that his first treatment is going o.k. - hang in there. Beth

Hi Persephone - I am so proud of you - You look radiant in the pictures and thank you for sharing your story with us and the pictures - It is so.......inspiring. Keep up the good work and take a few days to rest now - Beth

Jessica - What a cute baby Alex is!!!! Congratulations - I am so glad that your delivery went well and that you are felling ok and recovering nicely - You have 2 beautiful sons, what a lucky lady!!!!!!!!!!!!!! Beth

Hi Melissa - Thank you so much for sharing your experiences at Vanderbilt with all of us - I have been waiting for your post and am impressed with how clearly you write and remember so many details - I am glad that you have started feeling better since you have been home also. Have a great rest of your weekend, I enjoyed reading your story! Beth

Dear Jan and Jeff, I am sorry to hear the news that the cancer has spread - I volunteer on an oncology floor at a local hospital and have seen some people who I thought were not going to make it, walk out of the hospital and go on with their lives - There is going to be a tough road ahead, and some days when Jeff feels weak from the treatments, you will need to be the strong one there to lift him up - I will keep you both in my thoughts and prayers - Take care of each other and live each day to the fullest, God only puts on our plate as much as we can handle and no more. Peace to you both. Love, Beth

Hi Melissa - Welcome back - I would love to hear about Vanderbilt too - That was one of the places I was considering going to if I relapse bad again - Did you meet Dr. Robertson? When you have a chance, let us know your stories - I'll be wiating with open ears Have a great night!!!!!!! Beth

Hi Everybody - This is a great topic , here are a few good things that have come out of being diagnosed with POTS for me: 1: Smile often, no matter how bad I am feeling - It makes me feel better and makes other people smile back - Its a win, win situation, they could be feeling worse than I am and that one smile I give them could be the only one they get that day. 2. Be positive and surround myself with positive people - It doesn't do any good to feel sorry for myself - There are others sicker than me and although this has changed my life drastically, it will not kill me. 3. Everything happens for a reason, even though the reasons aren't always clear to us at the moment, they will become evident at some point. 4. I've become a more compassionate and stronger person since being sick and will never take my health for granted again. 5.Your true friends will be there for you no matter what, and for those who turned out not to be true friends - so what, who needed them anyway!!!! 6. My husband really is my best friend - sticking with me through sickness, as well as health(maybe one day I'll get the health part back again! ) 7. Thanks for being such a great support system on this forum. It helps to have others understand what I am going through. Good night. Beth

Ernie, I am very sorry for the loss of your sister and my thoughts are with you at this difficult time. You need to do whatever you think you can physically and emotionally handle right now without making yourself sicker - Do what is in your heart - The others gave some great suggestions if you are unable to make the services, esp. the part about a letter being read that is written by you. Your sister was lucky to have you in her life - you are such a caring person and whatever you decide, I know it will be the right decision. My condolences - Beth

Hi Lisa - I am glad your ablation went well and that you are home recovering. I hope you can kayak one of these days and enjoy the things you used to. Thinking of you! Beth

Best wishes for a speedy recovery Lisa - I will be thinking about you today!!!!!!Beth

Hi Persephone - I am from New Jersey, U.S.A. I live about 1 hour and 15 minutes outside of Manhattan NY. Beth

Hi EarthMother - I am sorry that you felt so bad this morning, but am happy that the emergeny room personnel,emt's & police treated you so well today. Hope you have better days ahead!!!! P.S. - Sophia - A DINET Card is the card that came with our bracelets when we ordered them that states the following information:DYSAUTONOMIA INFORMATION NETWORK-DINET.ORG "Dysautonomia can affect all automatic(autonomic)functions in the body, including the vascular,respiratory and digestive systems. Each day may bring health challenges for those with this syndrome including abnormal fluctuations in heart rate, blood pressure and body temperature. The simplest activity, such as standing up, may be a challenge!" - Hope this answered your question Sophia. Have a good night! Beth

Hi Ernie - I am so happy for you and glad that you are enjoying your new wheelchair and had a good day today and pleasant experiences on your first day out with it - you are a real inspiration to me. If I ever get up to Canada, I'll watch out for you cruising along the streets burning up rubber(only kidding ) Good luck! Beth

Hi - I am so sensitive to medications that my primary doctor hates trying me on any new medications ever because I am so sensitive to meds that I have a reaction to everything - I'm also started out on children's dosages and if necessary, worked up little by little to a regular dose to avoid complications, sometimes this works and sometimes this doesn't, depending on the medication. Because of our problems, I think that our adrenal systems are ready to attack and are on overload when something foreign enters our bodies - who knows? Beth Welcome to the forum also RAEJAE!!!!!

Hi Danelle - What a special person you are for being a great mom and Derrick sounds like such great young man. If I had a son, I would want him to be just like Derrick - You should be so proud of him - Keep up the good work and I am sure he appreicates you being there for him so much through his illness. Beth

I 've been on florinef for 3 years. I finally got tired of people that have not seen me for a while saying stupid things like "oh, you've gained so much weight, your face looks full, and other stupid comments etc." so even though I am not fat by any stretch of the word, i was 5'6" and 139.5 lbs. I decided to stop taking my florinef on 5/3/05.When I went off the florinef, I want to report that I have lost almost 9 lbs already in 2 weeks being off the florinef. No, I am not starving myself either. My doctor said I was not retaining water, but I think,and just my personal opinion only, that being even on a small dosage of a corticosteroid for so long does make you look rounder and hold in fluids. Now that being said, I want you to know a few things about how I am feeling- I have had massive headaches since coming off it, not very hungry, am lightheaded and get dizzy more than I did when I was on it and my doctor has no idea I have stopped taking it - My husband keeps saying that he is going to call him and tell him and that I am a stupid a-s for caring what people say- He said I look fine and that I better go back on the florinef or else.Also, if I felt better on it, he said then why am I being so stubborn about not taking it? Good point - Who knows- Anyway, I have a huge headache right now, so I am going to lay down for a while - Have a good Sunday. Beth

Its me again - I juist thought of something else - My neurologist said that just about every patient that he has treated with POTS/dysautonomia also has mitral valve prolapse which I do and therefore, there has to be some connection somewhere that makes us picking up POTS if we got it from a virus and not like the people who have it because of genetics. I wish there was more money for research for this so that doctors coul.d see where the problems lay and how to fix them. I know my words don't come out right sometimes-my cognitive thinking has gotten screwy from all of this- when I read back over my posts, sometimes I wish I could explain myself better - Sorry for the typing errors also. Beth

Hi - I was working alot and living in NJ and commuting 3 hours to work each way, we had moved to NJ and I had a great job for NY State and worked with great people so I chose to leave my car in the commuter lot here and take the commuter bus into NYC and then the train and Long Island Railroad out to my job -Anyway getting back to the point I was commuting 6 hours a day, working 7 1/2 hours a day, getting home at night and then doing laundry, cleaning etc, not getting enough sleep, not eating right and I was worn down and my body was ripe for picking up a virus so I guess with all the people in THe Port Authority in NYC, Penn Station, or on the bus or trains, I must have picked up some weird virus that did this to me. Its strange though, because before 3 years ago when I got sick, the year before, I blacked out one morning in my shower when I got up for work, wound up in the hospital for 9 days that time with all the POTS symptoms and was not diagnosed and for that whole year, I was sweating alot, was dizzy when I was running to try and catch buses and trains and out of breat all of the time, but I thought that I just was not getting enough sleep and didn't think anything of it until I blacked out again in March,2002, couldn't hold food down and that was when the real nightmare began. Its strange how one day you are in the prime of your life, with a great job, a good future and then wham, everything changes overnight. It has taken awhile to adjust to life as it is now, but I know that I am not lazy, never was and every thing happens for a reason. Beth

Hi OnTrack 1 - I just wanted to say welcome and introduce myself to you as our forum insomniac who is usually up posting at crazy hours of the night due to this wackiness that POTS does with the adrenaline in the body - I am usually wired and up most of the night and then tired and sleeping alot during the day. I also am in my thirties, worked for the state govt. until 3 yrs ago when I got real sick, crashed hard, was in the hospital for 5 months and haven't been able to work since - On the bright side, I get to see my house more, spend time with mt husband and 2 cute cats and am grateful to be alive and am a stonger person because of this illness. I hope you find lots of info on this site. Welcome again!!!! Beth

Hi Ernie - Thats such great news about your wheelchair - Atleast you will have more mobility getting around and will be able to do some things that you can't do right now. Hope to hear some funny stories from you once you get rolling around in your new chair - Don't get any speeding tickets!!!!!!! I know you Canadians are fast, you are great hockey players, maybe you can start a wheelchair hockey team!! (only kidding) Have a great Saturday afternoon!!!! Beth

Hi Janine - I was diagnosed 3 years ago and have come to terms with this illness and the changes that is has brought to my life - It didn't happen overnight - the first year when I was sick and spent 5 months of it in the hospital I wondered Why me? Will I ever get better? When will I be able to go back to work? and spent alot of time laying around and feeling sorry for myself. After awhile, I came to the realization that I had to make some major adjustments to my attitude and be more positive and take one day at a time because all the worrying and thinking I was doing wasn't helping me. Once I started to truly believe that God works in mysterious ways and this has happened for a reason, I have done alot better. I focus on what I can do, not on all the things that I can't do anymore. Maybe one day I will be able to do some of the more active things that I used to enjoy, but for now, I am just enjoying life and the time I am able to spend at home with my 2 cats and my husband when he is not working. This happened in the prime of my life, when I was getting ready to start a family, had a great f/t job with the govt. and wham. life changed in an instant - sometimes you have to just have faith that everything will work out in the end and this will make us stronger people. Sure, some days I don't feel well, but I don't dwell on those days, if I have to lay around and not do much I take it easy and don't beat myself up over it - I know its not laziness, sometimes medications and a chronic illness just gives you bad days and you go with it. Look, I am our fellow insomniac who is up each night till all hours, pumped with adrenaline, yet I have a hard time all day staying awake, even after 10 hours of sleep and usually a nap of an hour or more - My meds have been lowered, changed,etc and yet I still have this problem. I just go with the flow. Anyway, sorry for the long winded reply. Have a good night. Hope you are sound asleep right now! Beth

Hi Kathy - I am sorry to hear about how bad you are feeling - I cannot take zithromax anymore - It kills my stomach, gives me diarrhea,makes me weak and gives me a massive headache - Instead of zithromax, they give me an antibiotic called clindamyacin hcl - I don't know if it is good for the type of infection you have, but maybe you can ask your doctor about it. I am allergic to penicillin and sulfa so that rules out lots of antibiotics, but the zithromax makes me fell crappy even though I am not allergic to it. I have only had this experience with zithromax since POTS. Before that, I used to be able to take the z pack without a problem. Hope you feel better soon. Beth