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About CallieAndToby22

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  1. I know a pregnant lady taking her little 3 year old and husband who is sick to Sea World. She wrote out a paper declaring that God will keep them well. As a christian, I find this ludicrous. I mean if you want the virus the best place to go is probably Sea World. I don't know what to say to her without sounding mean.
  2. The local cardiologist is not accepting me. And today I got diagnosed with iron deficiency anemia which has only showed up on basic labs as high platelets. Finally someone realized they've been high since 2005 and sent me to a good hematologist. I'm just frustrated, it's pieces of a huge puzzle and I don't think this will get solved. Nothing can be for ME/cfs unfortunately, but something can be done about the IC which we're looking into embedded infections, and something can be done about anemia, but I STILL CAN'T FIND AUTONOMIA SPECIALIST. I live in Tallahassee and can't go on long trips I've gotten so fatigued. Is there anyone in Jacksonville? Southern Georgia? I also need an mri of my back to check if my spine is affecting bladder. I need someone who can read a PET brain scan and nobody at Shands could. Signing off, incredibly tired.
  3. Yes benzos help me a lot, mostly with ME/CFS post exertional malaise. Fatigue and brain fog. I don't know about the hyper pots.
  4. I had to get a lawyer. They don't charge you, just take part of the backpay. I never saw a doctor but I had to go in front of a judge and explain everything to someone who knew nothing medical. At the time I was battling autoimmune encephalitis, hyper pots, interstitial cystitis, and I have ME/CFS. They just sent me a letter recently to see if I've improved and truth is, I can hardly leave my bed. So we'll see what they say. They are very mis informed about chronic illnesses. Best of luck appealing.
  5. Well my last cardiologist refused to do iv infusions and it has helped my friend so much. Do you meet people with IC as well? I can't drink much, I just can't. Because of ME I have to rest a lot and the IC already makes me go to the bathroom a lot, I drink as much as I can, usually salty water with the salt tabs.
  6. I'm going to try and get them. I got in touch with that doctor and I know he does saline iv.
  7. So I'm pretty much doing everything I can for hyper pots. But today my blood pressure was extremely low and I was tachycardic (I was at a hematology appt). I have not tried saline iv's or some of the medications. I have severe IC so I can only drink water or salty water and I just plain and simple can't drink much. I need a lot of rest from also suffering from severe ME. Anyhow I live in Tallahassee, FL and I've seen Dr. Cox there are many treatments she won't do. I've been calling another guy all day and they don't pick up. I can't travel to vanderbilt or some far place bc I'm just too ill and we don't have the money to do it. Used to see Dr. Thompson in Pensacola but he started a new practice and not seeing any new patients. Any recommendations for someone in North Florida, the surrounding area, or south GA? I should add that the most helpful thing for my pots was ivig but insurance would only pay for 6 months because it was for another autoimmune disease.
  8. I get it too but I thought it was always ME/CFS. I do a few things on my computer and my brain loses energy and I crash. I don't know what to do.
  9. I'm a photographer who can't work. So I've tried selling online at etsy and nobody buys then on getty and nobody buys. I get $500.00 a month from the govn and I have $50.00 in my bank account and 3,000 on my credit card. Also, I was in a fender bender and I have car insurance with collision but now they're saying there is hidden damage and they won't pay for it. I don't know what to do honestly. I have to eat a certain way and it's getting expensive. I have medication and supplements to pay for, doctor's appointments. But I don't just have hyper POTS, I have very severe Interstitial Cystitis, Insomnia, and I have Myalgic Encephalomyelitis which leaves me in bed most of the time. I don't know what to do. SSI is BS, I got sick at 18 so how could I possibly have much work experience as a barista while in college then end up bedridden?
  10. I'm having a lot of trouble with MM. I've tried tinctures, vaping, and cream. All of them give me horrible headaches, wired but tired feeling so I can't do anything. I have been trying indica at night and having very troubling nightmares. I have IC (bladder pain syndrome) and I literally live in horrific pain and no doctor will give me anything. I use a heating pad all the time and I've got wounds and burns and discoloration. Someone suggested edibles. IDK. Didn't really affect POTS.
  11. Thank you. I like your cover, nice to hear some electric guitars as I only play acoustic. You should definitely share your poetry. Art is therapy.
  12. Here's a version of Silent Night I recorded the day after Christmas, lol. Also recently I entered a fine arts contest locally at university and my photograph was accepted.
  13. I can't take normal B12, makes me quite quite ill. But when I use methyl B12 which has to be used with methyl folate, I don't have side effects.
  14. Oh yea 2 years of experience. I have ME as well. I have tons of genetic mutations but my doctor put me on the mehtyl folate and we added B12 and niacin. They changed my life, I went from being homebound to leaving the house and having boost of energy and my ocd reduced by 75%. I do have one of the MthFR homozygous mutations. I had to quit taking them for the most part b/c of insomnia side effects, however very soon I'm seeing an ME specialist down South Florida and she heads up the ME gene study and does genetic medicine so I'm hoping she can really help. However to answer your question, never helped my POTS.
  15. Photography is one of my hobbies so I have lots of pictures of these pups. Sammie, Toby, Callie with Toby, Jake.
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