denabob

Wow! I think maybe we're twins seperated at birth...you sound just like me! (not sure if that's a compliment or not though ha ha ha ) I have a recurrent corneal erosion -my dog scratched my eye so deep that it only heals on the top layer and reopens on occasion,so far it's been 6 years Dr says it could take 10-15 to heal. He puts a contact lens bandage on it - it adheres itself to my eye-for about 3-4 days and POOF no more pain! The pain is mostly from the eyelid rubbing the affected area so the lens sheilds it. I then go in and he takes it off and I of course have to use the med. drops but it's much better than those hideous patches and no pain. I'm thirthy now so you can imagine how pitiful I'll be in 30 more years! I told my boyfriend that at least he cant say I'm boring I'm very entertaining at least.

That's my next request of my DR ,that he give me a standing order for IV fluids. He's 2 1/2 hours away and I dont have much confidence in our local hospital. They dont like when I go and dont let them re-run all my testing. I cant get them to realize I need treated and not re-diagnosed! I feel that it would help alot.Maybe then I could do without the Midodrine.

I know first hand about the frustration of waiting for ssdi (it took me 16 months) but I have to say that your struggle isnt in vain. You have to realize how many people get to see first hand the blessings the Lord is giving you by your christian friends and family. I try to think of it as this...if my struggle can somehow open peoples eyes to the graciousness of my Lord and show them that material things arent the only "treasures we have" then it's worth it! I wouldnt have made it either without help from friends and family but I did.I have a real issue with being the one who recieves the help instead of giving it but I get my chances to return the favor. I'm happy for you and your new home!! Try to enjoy it and forget the turmoil that led up to it!

thanks! I'll ask my Dr about it next time I see him.Keep me posted on how you do with it,please.

my lawyer told me that it was a real benefit to me that I fought so hard to stay working! The Postal Service forced me into med ret. and I fought kicking and screaming the whole way in the end though I had to admitt that I was a safety hazard. But Soc Sec couldnt deny that I had done everything in my power to try and work....this was a LAST resort! I really hope you can handle it but if you cant then you've showed your willing to try and there's no shame in not being able to work. Contrary to popular belief this isn't "in our head"!!!

I take Midodrine 1 week out of the month when my octreotide shot looses effect.I take 5mg 3 times a day and my skin feels like it will crawl off. My head is the worst if I touch my face or my hair then I feel like my nerve endings stand on end. Also I freeze when I'm on it. I know these are side effects that normally go away but I dont need it everyday so I dont build a tolerance to it. I wouldn't take it at all but without it I cant function. Any suggestions on what to do or any meds with similar results with less side effects?

I gotta be curious and ask what benefits you have experienced with it specifically. Also do you know why it helps?And what drug interactions would it have? The thing that I would be concerned with is ...isn't Ritalin an addictive drug?Sorry to be so snoopy but I want to explore every option for a "normal" life!

for me monitoring my HR is more of a precaution than anything also I can tell my Dr what triggers I have. My Hr goes dramatically up before my BP begins to drop so watching it helps me to avoid the severe nausea that comes with my low BP. I've only had POTS for 2 years now and still trying to learn my "new" body .Managing my symptoms without completely relying on med. (that doesnt cure it anyway) is important to me , this forum has been a great tool for that because I have learned alot about food to avoid and exercises to help. I'll accept any advice you guys can give! Hopefully I'll get familiar enough with my body's warning signs to not need the monitors any more but for now I still seem to blow it off as something else-like I'm just hungry or maybe I'm getting a cold,you know the typical responses. I'm stubborn so I still fight the symptoms and tend to push too far....I'm learning (the hard way )

my doctor says our sympathetic nervous system is very sensitive and can be overstimulated very easily. He says that's why I end up with migraines sometimes and to "try to control my stress level" If anyone can figure out how to do that with a pre-teen girl in the house let me know "k"? I take zoloft to help a little but I know I need to learn to stay calm.....not something I'm good at any way!!

aawww shucks! no problem!

I have mentioned on a couple topics that I broke my finger after passing out and landing on it. Well I saw the orthopedic Dr today and it isnt broken after all! The emergency room Dr made a mistake it was only bruised ( the bone ) So it still hurts but at least I can get rid of the temporary cast!!!

Good Luck , I hope you do well either working or showing that you cant. You are at least in a position for them to see first hand how hard it can be! Hopefully they can help make it less of a struggle for you. We will pray for you and I wish you the best.

you're a kind person so I have no doubt that your son will grow up to love life! I'm ok ...still unmedicated until next monday (just insurance red tape-I can only get my shot in 4 weeks not three-when I need it) and I passed out landed on my hand and broke my finger next to the knuckle (on my right hand -the one I need the most ) but hey..it could be worse! Now I just have another specialist to add to my list ,an orthopedic I'm trying to not let the depression suck me in and keep my mind on other things. Just doing simple things like brushing my teeth has turned into a comedy show... I'm really worthless with my left hand so you can imagine!This morning I realized how valuable opening a jam jar can be because I couldn't Talk about a new appreciation for the "simple things"

one other little tip..... write down all symptoms no matter how small they seem.When you see a new doc they tend to surround you with questions and you leave thinking "I wish I had mentioned __________" so that is important to make sure you have it written down. Good Luck

Clutz doesn't even cover it! I see it as a real talent.... when I do something I do it right!!! Laughter truly is the best medicine....in our case a necessity hope your jaw feels better soon. It probably hurts to smile and we cant have that with a group of professional comedians like we have here!!!!

I have that problem with my legs , they feel like they are fighting the muscles trying to relax. Advil helps me to calm them when I've done too much.

I'm sorry but the biggest problem with this illness is that none of us are really the same, we have common symptoms but we are unique in treatments and other health problems. It is a long difficult path to find the right combo to make this endurable still with our "bad days" but some are luckier than others so depending on your body and drug sensitivities you may only need a beta-blocker (usually one of the first drugs tried) or florinef (a corticosteroid) I'm not familiar with Canada at all but the test you need to confirm pots is a tilt-table test. I really feel for you with fibromyalgia, my cousin has that and is in a great deal of pain also!! pots is also not recognized by alot of doctors so hang in there and make sure your doc. is informed. You will have to have other disorders ruled out first like M.S It's a verdict by way of elimination process, very agrivating so keep your spirits high and pray alot!( hope that's not offensive to you...my faith is my only constant in my life!)

I just found the tanita monitor at www.everythinghome.com for $19.99 about $5.00 shipping but still less than anywhere else!! thanks for the idea I didnt realize they came that way and it has a normal clock mode also.

just a word to tell you my newest! I feel for you even though Ihaven't got that particular problem, I passed out and landed on my hand and (of course) broke my finger on my right hand which is the one I use!!!! I now have a typing assistant, her name is Lisa (she is just the best person in the world!!...and no that wasn't Lisa saying that herself ) I hope you feel better soon. Rather "we" hope you feel better soon. Lots of prayers.

I really appreciate your kind and very insightful words and I value this site very much. It puts a new spin on things.

Thank you so much for all the kind words. I have friends who encourage and support me but there is something special about hearing it from people who suffer the same challenges as me! I'm hangin on as long as possible and when I do need extra help at least I know I have it! I'm trying to focus on positives I guess it just hits hard when it comes from a 4 year old with eyes full of tears. I try to not feel guilty over something that I cant change! My heart just broke with hers and I appreciate your support and will try to adjust as best I can. Thanks for reaching out to me when I know I was being over-sensitive. I guess we have as much of a struggle with emotional as physical ( for me more emotional) and it helps to know that I can reach out and have you guys there to lift me back up!!!!!!!!!!!!!!!! I cant THANK YOU enough. I'm alright I just needed a shoulder to whine on. I'll be sure to return the favor someday!

I feel like a fool for what I'm about to say but as I read "bad day" I realize that this is the place for it! I'm crashing off my med early this month and I know what's coming. So do my children and my four year old looked at me tonight before she went to bed and said " I dont want you to be sick mommy because then I'll have to go to mamaw's and I miss you " She sometimes has to go for about a week until I can get my shot and get strong again. I finally can accept how my body betrays me but I am NOT doing a good job accepting how it betrays my girls!!!! I'm a single mom and I thank God for my parents but I feel like a failure when I cant care for my daughter alone. When my oldest is in school I'm afraid to be alone with my youngest. She saw me pass out once and thought I died ( just imagine how that was!) I'm getting ready to move in with my boyfriend in June and he's great , he's been to most of my appointments and seen most of my tests so he understands ( as much as possible) just how bad it can be. I worry that I'll be adding alot to him he's 13 years older than me so his kids are pretty much grown. Of course he wont be able to help much when I'm down because he has to work but I have a hard time recieving ANY help. How do we get past feeling like an inconvienience to everyone around us? Or is it just me who feels this way? I'm so afraid of being a burden for the rest of my life. I guess this is me feeling sorry for myself but thanks for letting me!

I was told that in comparison to "normal" people when they stand in one spot as apposed to when we stand our bodies respond like we are running in place. I tell my friends to run through their entire day every time they are on their feet and then they will understand why I get so tired! Also I read that it takes so much effort just to provide blood flow for things as simple as maintaining body temp. that we cant handle much more than that. I know it ***** and I still dont know for sure but I cant seem to find much of a way around it. I've noticed that I wipe out early in the afternoon and then I cant sleep at night, I'm not napping either ( 4 year old child and she no longer naps!) I have started taking an additional green tea capsule ( in addition to my weight smart vitamins) it raises my blood pressure enough to increase some energy without as much caffeine as actually drinking the tea.

I am one of the approved ssdi people and I have to say it was one of the hardest things I've had to do . Actually at the hearing I told the judge that I didn't want to convince myself that I'm disabled much less them but I have to take care of my kids and I physically cant hold a job. On my good days I still feel a little guilty because I feel "normal" but I know if I worked I wouldn't have many good days. My energy has to be conserved and taking care of my family has to come first! Then I get sick for a week and am very thankful that I went through the process because the reality of pots sets in. I'm not sure if there are disability counselors or not but there are counselors who handle chronic illness patients! It's not easy to admitt when we are weak but this isn't something we can change so we HAVE to accept it . We never have to give up but we do need to realize we have limits. I wish you luck and stay strong.

YES!!!! I feel it alot I do think it is what is considered to be blood-pooling. My legs actually swell and my socks will cut into me and leave little marks. Try compression hose it should help keep it from pooling so bad also elevating your feet regularly helps. When you'll be out for long try to remember to wear flat shoes, mine always gets worse if I'm wearing heels. Good Luck!