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cutiepie50

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  1. HI, I am home from the hospital after having a surgery on my tummy and the doc getting a 14lb tissue growth out. The incission is 31"!WOW! But they were concerned because I have POTS,COPD,CHF,sleep apnea and more. All went perfect. I gave the anestiologist a copy of what POTS patients should have to be put under and out of the 5 operations I have had this was the best ever and I know the medicine they gave me made a big difference. I had a relative I barely talk to....and she was down playing my pots. I really get annoyed when people and/or doctors do that. I would like to see them have pots and autoimmune system disorder. Anyways, I am happy to be alive and doing so well.
  2. HI, I have POTS and soon I have to have an operation on a giant hernia that grew in my stomach. This is the second time for stomach surgery. 8 yrs ago I had a growth and I almost died having surgery. I lost alot of blood and the doctors thought I would reproduce my own blood but I don't. An old doctor of mine had another POTS patient and she didn't reproduce her blood either. I was wondering if any of you are like this. Also, I am hyper sensitive to many medicines,especially one's that put you under. What should I have as a med to put me under for surgery? Also,I can not tolerate Florinef at all. This and beta blockers cause POTS for me. I recently was in the hospital and they thought I was having CHF. This was the second time I was so bad that I spent 2 months in the hospital catching other illnesses from the hospital. I had echo test on heart and another test with tube down throat to look at heart..but they say my heart is strong. I think this is all Pots. They don't. But both times I had such extreme episodes I was in the middle of changing amounts of anti-depressants. I find that interesting. What should I warn my surgeon of? I am really scarred.
  3. I see the government SSID doctor next week to determine if I am still in need of beneifts of disbility. I have been on SSD for 5-7 yrs. now I am being interegated. What do I say? It is so hard for me to actually discribe pots. I am in a wheelchair and I can not work. I had at nuerlogist but he is arogant and thinks he is God and doesn't see why I can't work other then I will be in pain. HE doesn't like when I call ANY of my symptoms POTS. But back in WI where I am from I had a POTS specialist who understood and agreed with me I have POTS and my symptoms are pots. Please....I am so afraid...what do I say to this gov physcian? Also they are sending me for a mental evaluation too . does anyone know what that is about? Any help is appreciacted.
  4. OK, my doctor gives me zoloft 50mg and clonazapam 1mg for night leg cramps. I had to get on his back to give me midodrine(SP?) when I was getting so dizzy when he changed me from paxil to zoloft. He doesn't really want to give me midrodrine. I have taken it for 8 yrs without a problem and now that I moved to this state and these doctors they do not want me to have that. And I use to use lorazsepam for tremors and sensory overload and he won't give me that. He says that drug hasn't been tested enough. Well, for 8 years it was great for me. I can not take flornif or beta blockers because they bring on pots for me. What medicines do you all use and what are they particularily for. Maybe i can talk to my doctor about something more. thanks
  5. Oh, I misunderstood you...sorry! I have been looking 3 years for good doctors that support my disability for POTS. It was rather easy in WI to find that support,I do not understand why in FL in Jax it is so hard. But, my daugther said something that made sense......Shands Hospital,which takes my insurances(and most don't) is a government hospital. And Bring that SSID is gov.too there does seem to be a connection. I just do not get how a doctor who sees me in a wheelchair and me and my daugther told him I can not sit long or stand long or stay online or read or watch tv for long periods of time thinks I can work??? That just really baffles me. He is the second doctor I have gone to for pots. the first one was super super mean!! The other doctors I have are really nice,but not the ones I need for disability. I will fight and appeal and appeal if I am turned down. And my health has worsen since I first got pots. It makes me upset when I see a tv show on disability and this lady got it for not being able to forward phone calls on the phone!FOR REAL!!! AND HERE I am really ill and fighting to survive.
  6. There really is not enough time to find a new doctor who will 100% support me. ALL doctors want tests,etc. So that is easier said then done. I have been doing alot of reading up on this and basically no SSID doctor can tell by one exam if I am capable of working or not. SO,the important thing is to be honest and do my best. I worry most because there are crap here in Jax FL for POTS doctors and none specializing in pots like back home in WI. SO I am getting those records from WI even though they are old..but I have not improved. And to add to that I have gotten Congestive heart failure and COPD since POTS. OBviously I have worsened. And meds for pots are really nothing but to keep me as comfortable as possible. I can not take alot of them such as betea blockers and flonef because they bring on my pots. I like that I can appeal and I can also use my lawyer from WI who originally got me benefits and it is good to know as I appeal,if it comes to that,that I get my benefits.thanks for tellinig me that.
  7. I ALREADY HAVE SSD &SSI. This is just a reexam. The scarry part is I have horrible POTS doctors here now.And one said he wasnt sure if I could work or not. Well. I know I can't! I live in Jacksonville.FL and Penn. is too far. The first time I tried for SSI and SSD I was refussed and my lawyer got it for me. It is hard not to worry about this. How can a doctor for SSI tell if I have pots anyways? Really!!! My blood pressure can seem normal while sitting sometimes,but it can drop or go high for unknown reasons. Also,my health has deteriorated since I first got pots. I also have COPD and CHF. And Obese now too. I really appreciate all the support thank you everyone!
  8. HI, I have had POTS for 12 yrs. I got SSD and SSI 8 yrs ago. I moved from WI to FL 3 years ago and now the government is calling me in for physical and mental tests to see if I am disabled. I have not had a good POTS doctor here in FL. no real specialist in the field like I had in WI and my pots doc thinks I can work.BUT I cant. I was a cabinet maker with my x-husband. then I got pots. Now I am in bed all the time. I can not stand or sit for long period of times. I forget alot. I can't even be on the computer long or I get potsy. I do not know how to describe what pots feels like.Can anyone help me describe it? What can I do? I am so afraid. SSI and SSD is my only source of living.
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