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About Whitewolf

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  • Birthday 09/20/1980

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    Northern NY
  • Interests
    dogs computers games

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  1. i been seen by dr ganz he was really good and easy to work with but i moved out of state so i no longer see him but he gets gold stars from me he is located in pittsburgh pa
  2. well at first i was told i couldnt stand because i was 24 worked 60 hours a week didnt have a boyfreind and lived with my parents who was trying to force me back into infantcy that was by a psychiatrist after my dad told him that i liked working didnt want a bf and lived with my parents cause i was buying a house off them but when i couldnt walk they moved me back in to keep an eye on me dad then told him off still no answers we did some research online and found out from another doc about the cleveland clinic and went there they who knew about it dianosed me with pots then we found some local docs that heard of it but to this day that is the first question i ask docs if the are formiliar with it currently having problems now was told by a group of cardiologist that i went to see that they are cardioligists and it is a problem with the heart therefore all their docs know about it LOL yea right the one i seen wants to send me to a POTS Clinic cause he only had one other patient in 20 years with it so now i am on hte search for a local doc that has more experience wiht it cause the closest POTS clinic he wants to send me to is 4 hours away one way 4 hours one way in car 5 mins can get to me some days aint going to happen currently living with freind who does the driving her husband needs to take off work to take her two hours away she is agoraphobic (recovering so far) but there is no way he can take off work to take me 4 hours one way he is nuts but i try to make sure all my docs have heard of it or will listen to me when i tell them things but we all need one expert on our case or the docs question everything just went through a big thing my PCP didnt want to fill my adderal cause he didnt see the point had to see a cardio for it to get it filled same cardio that wants to pawn me off on someone else so yea finding docs is hard finding one that knows something is harder i pray you have better luck then i am
  3. when i start my monthly cycle i start freezing alot but normally i tolerate the cold everyone else calls me ice cream i am good as long as it is cold but when my body starts to warm up my pots acts up horribbly but when i am on my cycle my body temp jumps around like crazy like right now i would normally be sweating but i am freezing so i dont know if i am normal for a pots person or abnormal for a pots person but dont know if it helps PS temp is 97.7 now not sure what it is normally sorry
  4. i just moved to northern new york and the cardio i managed to see and others in his building are not formaliar with pots i have no idea where to turn i did find one name but dont know nothing bout him it is Dr prieto he is an hour away from where i am i am up for suggestions he wants to send me to a pots clinic go figure didnt even know there was a such thing but a freind said the nearest one is over 4 hours away me and car rides dont get along any suggestions
  5. I know what you mean they told me the same thing i am a Machinist i cant even watch a machine run let alone be safe enough to operate it and in a wheel chair i am done now lets say i do go back to school for another job what can i do in a wheelchair who is going to drive me to work every day and what can i do my mom already quit her job to take me to doctors appt and watch me i cant leave the house without anyone i need someone with me that knows about POTS and they want me to get a job and on top of the POTS i am a severe diabetic but according to SSI i can still work DOING WHAT i am sure they wont even hire me i am half tempted to apply at the social sucurity office and let them refuse to hire me
  6. when i go to the hospital they dont know what POTS is after explaining it to registation and about an hour of searching their books i finally just started telling them Soldiers Heart they dont know what that is either but at least it is in their book of codes but a card would be cool i have a medic alert braclet and i got it on there i had to call medic alert to get it put on it wasnt on the list on the computer thank goodness i havent had any emergancy but i dont know if it works but they will get the name of it if they call and when i leave the house someone with me know what it is but with this medical problem we should all get some kind of card saying admit us quick since it has to do with our heart and we could have further problems if treatment is delayed and if nothing else evey doc should be educated in it it is bad when the patient is telling the doctor what they have and how not to treat it
  7. i applied but go denied since i am only 25 they claim i can still work even though i live in the middle of nowhere and can no longer drive but i reapplyed and am waiting still fighting with docs and stuff i went to the cleveland clinic and they did what they could but they refuse to deal with lawyers but now i am dealing with a doc in my area and he is helping when he can and yes i am now seeing a Phych doc i am not nuts but as this goes on i feel i am starting to go nuts my mom thinks i am depressed but i dont know any way i am waiting they say i should have a date by feb 2007 Here is some thing to make you guys laugh : before i was dianosed with POTS they told me i was nuts since i had no boyfreind and lived at home i had no boyfreind cause i was working 70 hours a week and lived at home because i have diabeties real bad and almost didnt make it to the phone one time i think they were nuts lol
  8. i lay down on my back and it feels like my 55 lb dog is laying on top of me i have to sleep on my side laying on my back just hurts too much
  9. cold it is 80+ degrees where i live i cant go in the sun it makes me dizzy and i am walking around in sweatpants and sweat shirts my mom who is always cold is wearing shorts and t-shirts i hate the heat and the coldi aint right in either i want to go jump in a pool but i aint got one and the sun would get me if i did i get bathes but then i spend hours trying to get warm What to do???? whitewolf
  10. i have one flight of steps to go upstairs when i have to go up i crawl and i slide down on my butt that alone wears me out my perants moved my bedroom downstairs for now but are looking forward to moving it back upstairs i dont know anyway other then that uneven ground gets me but i dont like little spaces so i didnt like elevators pre POTS but now they are worse Whitewolf
  11. does steps or heights get to anyone besides me i am not afraid of heights or steps but since POTS got me they seem to be a problem Whitewolf
  12. the hose are supposed to push the blood that wants to pool in your legs out of your legs they work a little but i find that when you take them off sometimes your legs hurt i dont use the weights cant help you there Whitewolf
  13. i was told that the florinef is meant to retain water and salt to raise blood pressure whitewolf
  14. its might be related to the pots dont know for sure but i have had earaches since Christmas when i became dianosed with pots i have also been getting colds that last at least a month stuffynose cough and more Whitewolf
  15. i became Diabetic the year i was to turn 21 2001 for the last 4 years i have been fighting doctors and sugar levels i had 4 cases of ketoacidtosis well bout a year ago i got a job as a apprentice in a machine shop i was going to get my papers finally i thought december 25 2004 christmas day i was taken to the emergency room i couldnt move called off work i was in the hospital for about a week then released with a Rx for a quad Cane bout a month later my PCP got me a walker with a seat on it after i calapsed in his office after sitting for a bout an hour i went up then down then a couple weeks later i was in a wheelchair and now as of May 1st i am terminated from my dream job and lost my insurance to boot i have no money coming in i have 2 dogs and my perants are supporting me in their house and now both my perants have high blood pressure i just want to go back to work but i cant my job is dangerous for a healthy person let alone some one who can calapse at any time any suggestions
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