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Posts posted by blsvlo

  1. I just recently hired a housecleaner... She comes in every other week and my gosh she is good...... best money I could have spent!!!! work of caution it took me 2 to find the right one!!! The first one took my pain medicine :-( but it was well worth finding the next one...

  2. You are very talented with your writing..... hugs

    I'm a little off since I'm sick but...

    Some days I feel like, "Awww maaaan, I'm stuck in this place again?" XD

    Cause I think I would rather be upstairs. XD

    But...I feel my heart racing because it's time for medicine! And sometimes I am hungry. And thirsty. And I need to OMG PEE. And yet if I get up too fast I might fall in the floor and then I would pee in the carpet and that would do me NO GOOD. So I have to go slow and hope I don't overflow by accidently tangling in the sheets because I can't get MY LEGS TO WORK.

    Okay. Free. Now to wobbbbble to the alarm to turn it off because if it was near the bed we would NOT get out of it. And to wobbbbble to the door like a pregnant lady because my bladder is THAT FULL. And to the bathroom.


    Okay. Wash face to get all that nasty oil off because I have enough to run a car on my skin. Thank you, hormones. Wash hands. Rinse out mouth because I'm sure an army of bacteria is in there screaming, "THIS. IS. SPARTAAAA~"


    Have fun with the wavy lines because when I move they're everywhere and so I get to imagine I'm tripping while I go to clear the dishwasher out. Then I say good bye to Dad, and go to take my pills and sit in the bed to check email and decide how strong I am to go to work.

    I am strong enough. Stop being a baby.

    Go to take a shower. Avoid shower for another thirty minutes by eating breakfast naked. Yes. Wander around getting clothing ready and other things ready, all while naked. Because other people are in bed and Dad's gone to work. Naked is fun.

    Finally get into shower. Turn it o- WAHDOFERHGRHQIGRE- WHO LEFT THE SPRAYER ON?!

    Anyway. Wash up. Wonder who made the delightful plastic bars that are in the wall that you use to hang on while you wash because they are amazing. Imagine they were inspired by monkeys, not weak people like you.


    Get out, dry off, get dressed, all while panting and wobbling. Weeeeble~

    PEP TALK in mirror about how YOU CAN DO IT.

    Go into room, pack backpack. Look at cute dollies and wonder who you want to take today. Or a plushie. And some books or something to do on lunch if you don't go on a walk. Ponder this for longer than you should before you have to kiss Mom good bye, run out the door, and go to work. CURSE HUMANITY FOR NOT DRIVING\WALKING\WORKING\DOING THINGS AS GOOD AS YOU BECAUSE YOU ARE ILL AND YOU ARE STILL MORE AWESOME.



  3. thanks for your replies..... well I did start beta blockers a few weeks ago and it does seem to be since then that I have gain a few more... This worrying about weight is just too exhausting and I agree with it may not be a blessing to be too skinny too... So I just want to be healthy...lol :) thanks again and more advice for anyone on here cause it seems alot of us are struggling one way or another... I do like the idea of the bike laying on the ground!!! hugs to all

  4. Somewhere I heard that type A personalities seem to be more effected by pots.... I some how believe that! Most of us are saying we were very actice and athletic in some form and that is somewhat of a type A persons.. I am only 5'1 and a little overweight but before dx I lost lots of weight and now I can not get it off..

  5. I can not seem to lose any weight. If it is as though we are doing aerobics in place then why do I have weight issues??? I don't eat alot and I try to be active. I tried riding my bike this morning and just 2 minutes and my heart rate got up to 183... It makes me so exhausted to try to excercise. My polar heart rate monitor helps me try to stay in the right range but it is hard... Anyone have any advice on how to take some weight off?? As if I need more problems from the weight... Thanks, and hugs to all

  6. Thanks for all the responses....... You guys are so supportive...... I did get with my POTS doc and he upped my deta blocker just to keep my heart under control! I did work through it and stayed pretty much in bed. I do feel better today but I will be watching myself for possible pneumonia... Hugs to all, Lisa

  7. I have flu like symptoms with a cough and burning chest. Laying flat my heart is racing (even on my beta blocker) and hurting so bad I almost feel like I am dieing.... I really rather stay in my own bed but I also don't want to be too stubborn that it could cause me my life.... I also have MS.. any advice for me?? hugs, Lisa

    I forgot to mention I have POTS..... :huh:

  8. I have flu like symptoms with a cough and burning chest. Laying flat my heart is racing (even on my beta blocker) and hurting so bad I almost feel like I am dieing.... I really rather stay in my own bed but I also don't want to be too stubborn that it could cause me my life.... I also have MS.. any advice for me?? hugs, Lisa

  9. I can relate. I had in-laws who made similar comments, which in turn, made my husband think the same way. Now, my marriage is ending with the dissolution being final on monday. I had a new doctor imply I had munchausen syndrome and send me to a shrink, even tho I brought all my medical records to him. Some people just don't get it and never will. All you can do for your own piece of mind is ignore the non-believers.

    I am so sorry :-(..... i can not imagine what you could be going through, my heart really goes out to you... If you need to talk to anyone please feel free to message me. Hugs and Kisses, Lisa

  10. I am only suggesting this because when I didn't have a doctor at the time that wanted to help me I did my own research and if you would put in your search this name (pheochromocytoma) and read about it and see if any of it fits you and your symptoms. I am not saying this is your answer but it is a good place to search... You will need a 24 hour urine catch.. hugs to you, lisa

  11. I agree with both the Tilt table test but whatever you do don't let them use the blood pressure to determine the dysautonomia..... I am dx. with POTS and several doctors said I didn't have pots because my blood pressure didn't drop enough. I would also suggest the 24 hour urine that will see his level of sodium and it checks for some other important things... Please whatever you do be proactive with his health........don't give up and remember the Doctors work for you!!!! If you go in there and expect them to help you because you are paying them to do that it seems a little easier to get things done!!! Hugs

  12. i've been in a flare up or whatever u want to call it for about 3 weeks. I am so weak, can't think straight, blah blah blah. But I've also got this burning/numbing feeling down my spine and my left hand goes numb a lot... anyone else get symptoms like this?

    I was dx. with Multiple Sclerosis in 2005 and then pots in 07... the shocking feeling down spine and the numbness in left hand and arm is one of my first symptoms with the ms... but I really could not tell you which one it would be seeing how both are the nervous system....

  13. ok where do I start.............. just like most here you struggled with any doctor believing you and most pass you off as crazy or doing this to ourselves and put you on anxiety medications.... I wish some how i could go back to all the docs. and nurses who did that to me and my family and give them a peice of my mind and hope that they will reconsider how they treat people.... doubt it will work!

    anyways, I went to the physician list on this website and low and behold seen a doc. just 2 hours from me in kentucky who knows something about Pots........ and i made the appt. it was monday and i came out of there in tears with joy and peace.... he told me you are not crazy and most docs will tell you that but this is your autonomic system messing up.......... holy cow he didn't have to say anything else............ i was where i belong!!!

    I have POTS................ all the other docs couldn't understand why my heart rate was 160 standing and my darn blood pressure was remaining the same.....

    how about POTS and then they say no way your bp would go down......... bull malarky!!!

    I just want to thank this site for the info and education to get me to a place where me and my family can relax and not deal with the stress of docs. saying i need a shrink....

    i highly recommend any one close to bowling green ky to go to him......

    love all of you!!!!!!!!!!!!


  14. WOW!!!! this is very encouraging........... I have been using my walker alot more and we are so excited!!!

    the only thing that is different for me is i have multiple sclerosis along with this autonomic dysfunction :( and I really pay for it, but I have been doing so much more and mentally i was able to get back in the game!!!!!!!! because of all the great advice from everyone here.....my family and I are thankfull to all of you...

    love lisa

  15. The reason I am asking is I want to know if I could kill myself by using my walker more than my powerchair???? Will I cause a heart attack or stroke if I push myself?????

    I am going for the first time to see an autonomic dr. ... finally being put in the right path.

    My husband and family see me struggle and see how severe my symptoms are when I try to walk,,

    I am wanting to be blunt but not scare anyone either!!!!!!!!!! can this condition kill us?????

    I know everyone is different with this condition but it is hard when you don't know the limits and not sure what you can do.... I feel sometimes I am so limited mentally thinking I will hurt myself so it keeps me from doing things.....

    hugs to all


  16. Amy, i seen on your condition list that you have slipping rib syndrome..... i have been all over the internet looking for something to explain the pain i have in one of my ribs and then i seen that and read more on it and wow that is probably what is happening to me........... has the doc. said if this could be related to lyme?????


  17. i have called my doc. today to report the bp change he needs to call me back...

    since they have sent the PT to my home he has been doing very little excercises with me while i'm laying flat but when he tries to get me to walk with my rollator(walker) i can go aprox. 10-12 feet and i become very shaky and sweaty and feel faint and he checks my hr and it is always around 150bpm and we get to the bed asap........ i am very sick and then it seems i pay for it for 2 days...... he no longer wants to do that anymore.... this is even on the beta blocker..

    i had a positive ttt but the cardio has not come out and said it is POTS..... they don't seem to be knowledgeable about it in my area.... i am going to vandy june 13th!

    hugs to all>>>lisa

  18. i have been on toprol (beta blocker 25mg once a day) for 2 months and i have not found a change except now my bp while laying is much lower...

    before avg. was 106/63 hr 69

    now avg. is 88/50 hr 55 is this ok???????????? or do i need to report that to my doc....?

    maybe this will be an easier question for now......... thanks, lisa

  19. i have been over at the lymenet finding very similar symptoms..... i was dx with ms in aug 2005 and now i have to question that dx. because it is rare to have pots and ms and it isn't with lymes and pots....

    i just wanted to know how many of you with pots has lyme as well??????

    by the way i got my new wheels........... a brand new powerchair that reclines and my legs are lifted as well....now i get to scoot down the road to the park with my kids.....

    i have alot of independence back and i am going nuts wooooohoooooo!!!!

    i do pay for it though because i am so wore out!

    my neurologist who was not wanting to help me out at all finally after i cried alot sent a PT to my house and he witnessed my disability and wrote a letter and then all of a sudden the scooter store calls and says i got my powerchair and the insurance is paying 100% of the $8000.00.............. i was so stinking excited....

    ok one more thing........... i have been on toprol (beta blocker 25mg once a day) for 2 months and i have not found a change except now my bp while laying is much lower...

    before avg. was 106/63 hr 69

    now avg. is 88/50 hr 55 is this ok???????????? or do i need to report that to my doc....?

    i do my readings and it goes from that to 126/82 hr 110 while standing after 5 mins.... i don't go any longer than that i really pay for it badly....

    any input????

    hugs to all>>>>>lisa

  20. I have had these episodes for a few years now and i had the hardest time explaining them to anyone and you describe them to a T..... my neuro just assumed I was having seizures so he put me on this very expensive med. and now that i have progressed to the point that i am bedridden because of the POTS, I realized that those episodes this whole time was my symptoms when my hr goes up so high and stays that way for a few minutes. my body goes into some kind of crisis and the neusua and bm thing is when it all happens and that is when i feel like my body is having a seizure and it last sometimes 30 mins. or more unless i make myself lay as flat as possible then it goes away much faster.... this episode is what happened to me at 2 of my tilt table test.... they are horrific. please take care of yourself and when this starts to happen get your body as flat as possible and see if it is not as bad for you....good luck and let me know if it works


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