tinkerbella

I've had leg cramps and joint issues forever long before the POTS dx.I do have fibro along with it. I do take potassium, calcium, and added thermotabs that have magnesium in them (stopped all florinef and midrone due to the nasty side effects) . I think the added mag. is helping cramping and I sure like the thermotabs much better than the drugs even if I have to pay for them. I don't think every joint pain is EDS, as some of it is side effects of midrone and florinef. I have just OA in my joints with a high ana so they keep an eye on things watching for lupus. I don't show RA, but tell my joints that. I hurt but try to keep ; ).

my joints have hurt forever and now since florinef WORSE! I have been told it's a side effect of the florinef. I just tried to see if you were on it but, no meds were listed. Now from so many falls over the years I've torn the meniscus in my knee. i got a cortisone shot last week but haven't got relief yet. I'm assuming oa in there also. Along with so many other joints. I'm now taking theromatabs to keep my BP up. bellamia~

I was going to go get fitted for support hose tomorrow morn. Then I saw this and thought I'll do it myself. No one has ever told me the right way to put them on either so I thought I would pass this along. How To Measure http://www.supporthosestore.com/howtomeasure.html Hope it helps others. bellamia~*

Well I'm having a sleep study done soon and it's held at a, "MARRIOTT HOTEL," now too make it easier for people to be in a more comfortable setting. I also take calcium when I wake in the night and can't get back to sleep. The doc said,"wouldn't it be wonderful if you had sleep apnea?" Let's all go and have a big potsie party!!!! <3 bellamia~

Everything makes me feel sick to my stomach. SO, I'm trying vitamin water now for a change. drink beverages at room temp slowly now rather than down them... and when all else fails take my nausea meds.

PRAISE THE LORD!!!!!! KEEP THE FAITH..... <3 U ERIKA. I KNEW U WOULD REAPPEAR STRONGER AND BETTER. Bellamia

The story was in response to an article on anxiety and heart disease. I was going to respond and didn't. Now I wish I had so I think we should all contact ABC and and make them aware that we need awareness and just how severe Pots is. There is power is numbers... I gave my email and 2000 word story. Let's all do it. It's at the end of the article and do it to ABC not just a comment. Can't hurt to try... Bellamia~*

Endure, I knew I had read this somewhere.... I'm so very sorry for your pain and suffering. I also admire your courage for being brave enough to tell your story.....I will pray that healing energy surrounds you and heals you right away. thank you for sharing.... hang in there. xxx's bellamia~*

THIS WAS GREAT.... I MUST SAY I HAVE been lucky with most of the doctors I go to. It's the ER I detest.... My PC Has never let me down and has although I'm sure she wanted to ring my neck from time to time stood by me through thick and thin as my chart is now volume # 3 or 4. Yesterday, someone working with me said, bella, you are so easy and nice to work with, not all our clients are. I'm not bragging but it goes both ways. I try my best to cooperate and talk about what works and what doesn't. Also, she does send me to a lot of women docs who seem to have less of an ego. (no offense anyone, what I mean is womman just seem to understand woman's bodies better) exception, my cardio is the most wonderful man I ever met in my life as far as his job too. Why? He listens to me and then treats me. MY PC sends me to people she would send herself to or family members to. There is never a fight, she listens, we talk, we make plans.... she does whatever she can to help me even if she eats up the cost. She's an angel in my cast of those here on earth HELPING, HEALING, AND GUIDING me. So when I got her I was given to her by my last doc who made her promise to take the best of care of me. as she was moving to another state. She had lived up to her promise. God Bless her and all doctors like her. I'm very blessed. bellamia~*

We are not suppose to do the sun.. not only because of pots but the meds alone... sorry nmorgan Every time I go out I get heat rash and more.... I'm so cute ; )

sex....now my children maybe reading this. hum..., would be nice if i had the perfect man in my life .... though meeting someone now is hard, being home bound and in hospital 2 full says a week. but when they ask my status, i say single and looking... at least i can still laugh..... <3 i'm sure one day i'll find the real deal as my little gd tells me and I'll bring this post right back up, cause i may have pots but my heart sure needs loving. God will lead me to the right person hopefully soon..... ; ) bellamia~*

what is the liquid sweet jana? is it the so old one? i have to down it if it is and then it sits...................likes it's never going to work till after bottle # 2 then hours later the magic begins.... i could use one now..... i hate this ibs stuff. i know too much TMI. xxx's love, bellamia~*

You need to have your dr. get you a pt evual. for the chair either at a major pain/rehab where they deal with fitting people with chairs ( THE CHAIR REP IS RIGHT THERE) or have your doctor write an order where a pt comes to your home and does the eval there. Then your doctor documents by tests you have had that you need one for community use. Be aware of wheelchair ramps codes in your town if you need one to get in and out of your home as you need it before it is delivered. Mine came from Ivacare, TDX SP, it's the power recline.

SPREAD THE WORD and write yourself. Have your family write on how it would effect them if you lost services. We need to speak now before it's too late. I was lost in the cracks and just got found for services I should have had years ago. What will happen next if we don't all speak up? Write to your Senator and make a difference now. Thanks, Bellamia Pass this on before it's to late! Urgent Medicaid Support Required for People with Disabilities | PadminiArhant.com http://padminiarhant.com/?p=4397

Same thing with me and the eye....

The pharmacy accidentally put me on 150 mg when the liquid said 2 and a 1/2 tsps on the box. I felt like I was dying. I ended up in the ER with a near bowel obstruction and they didn't figure it out till I got home and was starring at the box it came in and noticed it said one tsp = 60 mg. Then I called the drugstore and he said get to the nearest hospital asap. Lesson learned, always check what they give you is what you are prescribed. It took a long time for my body to adjust to coming off that large amount to to the correct amount. I'm now on 60 mg 60mg 30mg. morning, noon, and early evening. When I first started it my IBS was out of control and I honestly thought that was why this was called POTS. As time 2 3/4 years has gone by I still need to know where every bathroom in town is and The liquid form is easier than the pill form as when you break the pills them crumble and they are wasted. I still need to be able to get both forms of the med as sometime you can't bring liquids places. I pay the price if I eat too much and have just take the med. the nausea is brutal.... It is hard to breathe just from the pots in general, I'm thinking it's all the gatorade and trying to go more with salt water and less gatorade or sip it and not down it. I hope that was helpful. Hang in there. xxx's bellamia~*

mine was huge yesterday like a mosquito bite gone wrong with rashes everywhere, tonight it's a smaller bright red spot. boy that sodium cromolym cream has just about calmed down every rash and itch I had. I had another spot ontop of my foot, looked like a tick so I grabbed it off. now I have a nice scar on my foot. lol with my neurapathy I never feel when I hurt my feet. Best way to get a tick out, is to put vaseline ontop and it will release right away in one piece. Best trick I learned having a dog, julie you and mack get well soon. xxx's bellamia~*

I'm going to do a body check right now on me and my dog. I have a big mosquito bite like that. the dog and I are both itching but I have my new mast cell cream that I can put on again real soon. pretty expensive for such a little amount of cream. Be back after I check . BellaMia~*

When I can I keep at home bb's. I'm allergic to them but if I spike I can take a sliver of attenolol every couple of hours just to get me down. So I never throw out what I turn out to be allergic to as in tiny pieces just for a day I can be micro managed. When I'm at the infusion clinic and this happens I can't get out of being sent down as they have to check for CHF or that I haven't had a heart attack from all the fluids they just gave me. I really dislike it, I have been admitted and they haven't been able to reach my cardio and infact made me worse. Now I have his permission to page him myself until he is reached. It is protocal that he is paged until he is reached and last time it didn't happen. So, we have made a plan. : ) BellaMia~*

I would like to know how to also. Someone tried to explain how to do the Icons, but I just didn't get it... BRAIN FOG FOR ME.... maybe we can all learn and see more pics. Bellamia~*

Julie, I'm so sorry that you and Mack both have gotten this. Glad you caught it. You pics are not working and I would love to see them. I was wondering how you could get to do them from your desktop? Get well fast. (((((((((Double Hugs))))))))) one for you and Mack. Love, BellaMia~*

Must be my brain fog..."Flagyl" once after the mothly treatment, I couldn't get off of it, as symptoms came back real bac. So now I'm on one pill a day for all of the above. I also add keifer the probiotic and LOVE it!!!!!! I still need to know where all the bathrooms in town are, but flagyl make a big difference in many ways. I've added more fiber, fruits, greek yogurt. BellaMia~*

I'm so sorry that happened to you...I dislike the er, and do a lot of over the phone treatment to bring down my HR with meds and extra fluids by my cardio or PC and we check in an hour and then again to make sure things are working. I'm blessed that I go to an infusion clinic 2 days a week. So, I get pretty pumped up. I hope you are feeling better now and now that it is getting hotter out I have to remind myself to drink more and becareful if I go outside in the sun as I can quickly be loose everything I just put inside of me. I hope the rest of the day is much better for you. xxx's BellaMia~*

Hi Don't worry about the buttons... It sounds like an event monitor where you push the buttons when something happens. Do you have to call some place and play it back to them? If it is make sure you tell them where you are as with mine no one told me they were sending an ambulance and they sent it to my house and I was at me daughter's. LOL! It's funny now, but it wasn't then.... Always communicate clearly as they just have notes on where you live. The monitor people must think we stay home and do nothing all day... (Well back then I got out more) Now it's a different story..... Good Luck, BellaMia~*

VERY INTERESTING, now how do you take the olive leaf in what form and how much? Thanks, bellamia~*