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briarrose

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Everything posted by briarrose

  1. Kristen I really have very few family members around. My mom isn't in the best health and can't possibly fight this battle with or for me. My kids are mostly too young and definitely inexperienced. I have an ex-boyfriend that is very persuasive but he doesn't really want to help and I would feel funny accepting help from him, I would rather die first (not literally but you get my drift, I?m a little prideful.) Many of my friends at work are really pissed that this is happening to me but they can't do much either. Unfortunately I'm flying mostly solo on this. The best I can hopeful is writing a really good appeal and it would be nice to have documentation backing me up but we all know how hard it is to get study documents.
  2. Thx again everyone! I'm so scared & frustrated, I can't begin to tell you. I'm not just taking this because of POTS. I'm also extremely Orthostatic hypotensive & without the Epogen my crit falls quick. When I started Epogen my hematocrit was 28. I had almost no Iron in my body & my saturation level was less than 4. This treatment has done so much for me, it's limited the fatigue, sob, ringing in the ears, minimized the nausea, cut way down on my headaches & migraines, etc . Now that has all started again. I can honestly say I don't have it in me to fight back again. I'm not suicidal, I'm not depressed, I'm just being frankly honest with all of you. I've exhausted my resources and I don't have the fight in me this time around. If my crit falls really low and I get really ill, I'm planning on my mom putting me in a nursing home. thx for all your support. steph
  3. My insurance company already stopped paying a few weeks ago, I'm already symptomatic and getting sicker. I am having horrible feet and hand cramps, nausea, horrible headaches, stomach problems, moody, cognative difficulty, etc. The insurance company said that it changed it's criteria for ALL it's patients and they don't make exceptions. I tried to explain that the Epogen is to get the hematocrit to 50 or close to and they wouldn't listen. I work in an ER so I know that won't give Epogen there. I can't use the State Commission because my insurance company is self-funded. I would have to use a federal organization and that is only going to be somewhat helpful at best. Has anyone seen any articles on the success of Epogen or Procrit for Dysautonomia or Orthostatic Hypotension? This is a frustrating process and I'm truly scared for my very immediate future.
  4. Thank you guys for your support. Maggs that is one of the things that I'm going to put in my appeal letter. I have saved them a ton of money by staying out of the hospital and my primary care docs office. As expensive as the Epogen is the alternative is worse. A few years ago before I went to see Dr. Grubb, I was so ill that I was nearly ready to have my mom put me in a nursing home. Now I feel like it's knocking at my back door again, I'm honestly scared but I will go down fighting. This has been a tough battle. I didn't realize there was anything wrong since I've been getting this treatment for 2 1/2 years and then puff, suddenly my insurance company decides it's too expensive to pay for.
  5. Thx Lois & Corina. I can't begin to tell you how scared, angry, frustrated, etc I am right now. I can't believe they're trying to take away one of the things that has helped me the most.
  6. It's been a long time since I've posted for help but I'm definitely in a bad situation right now so if anyone has any information or has been through this process please HELP! I've been getting Epogen injections for over 2 1/2 years and suddenly my insurance company has decided to change their criteria for injection. They don't care that I'm a POTS patient and the goal is to have a hematocrit of 50, their new criteria says your crit has to be below 37. I get symptomatic when I hit the low 40's, I'm currently below that! I'm in the process of filing an appeal but if anyone has documentation stating the positive effects of Epogen in POTS patients could you please send me a message. Thx Steph
  7. The pure exhaustion that you're describing sounds like me in my early POTS stage before I received IV Iron and Epogen injections. I would sleep all the time. Did you take anything for your rash? Have you talked to your doctor about the reaction?
  8. Here's a weblink for kids with POTS. You can read some of there personal stories too. http://www.dynakids.org/index.jsp
  9. I've been tested for many things and it's all been negative. They said I don't have fibromyalgia. Dr. Grubb started me on Neurontin, it was the first drug that gave me relief from horrible joint pain that I had suffered with for over 10 years.
  10. My family has coagulation problems but I think this is genetics not POTS related.
  11. I'm learning Pilates from a physical therapist. I have a bad back and they are trying to strengthen the core muscles. I sometimes have a problem with the breathing that comes along with the exercises but it's been very good for my back.
  12. If it happened on campus I would imagine that you can go to whoever is in charge of health & safety and make sure that all of their people are retaught the proper procedures. As for a long term effect I don't think anyone here is qualified in answering that question. Your symptoms make me wonder if you are hypovolemic. You should be concerned with your fluid intake and probably your blood count. It doesn't sound like you were getting enough circulation to your extremities either. These are just my opinions, I'm not a doctor. Good luck steph
  13. Haven't heard of it but there web page looks impressive. http://www-neuro.med.ohio-state.edu/autoweb/ they've also listed a reconditioning 15 week program http://www-neuro.med.ohio-state.edu/autoweb/
  14. Mel I've had this a few times but it's been quite awhile. The spinning was bad enough but it caused my nausea to be 10 x's worse than the norm. I never went to the doctor about it because it was one more thing that he would've said, "you have a chronic illness, you need to learn to accept it" and I just wasn't in the mood for that line of his. I hope it gets better on it's own. steph
  15. Lisa I didn't really see all the positive effects of the Procrit until I missed a few weeks in a row and my crit fell to about 38, Wow, that was an eye opener. I do everything in my power to always keep it above 40 now. My target is also 50. Steph
  16. My first injection made my arm very hot to the touch for several hours. I would normally go home and sleep right after the injection because it would make me feel worn out. Early on it would almost always give me a fluish feeling for the first 24-48 hours. A few times they tried to increase my injections to 20,000 U and that made me feel twice as bad, so I won't let them give me more than 10,000 U. I've been on the injections for 2 1/2 years now and I'm very glad that I've stuck it out. I almost always get them weekly, it's been rare when I've been able to skip a week. There have been several posts about Epogen, Procrit and Erythropoietin so it might help to do a search and see what others have said. hope that helps a bit.
  17. OK, not sure about all of the new stuff. I didn't know of either of my parents to have EDS. My mom always said I was double jointed as a kid. I have more flexibility from my waist down. I'm worried about my son though as he keeps dislocating his elbow, can pull the skin off of his arm and is now having problems with strained muscles and pulled tendons. 3 members of my immediate family have Marfan's which is associated with a connective tissue disorder. I was told that I had EDS III and then I was told that I had hypermobility joint syndrome. Have to finish this later on tonight
  18. Welcome to the forum. Sending sunshine your way and hoping that you feel as warm here as everyone else does Steph
  19. It was nice to finally meet everyone in this area, except for the 2 Corina's and hopefully they can make it next time. I'm glad you made it home safely, was worried.
  20. I have had sleep problems but none of my doctor's have ever offered a sleep study. I was first given Trazadone in a low dosage which left me hung over all the time. Now occasionally I take Sonata. Sonata usually helps me get to sleep, get about 4-5 hours of sleep and then wake without feeling too hung over. I find that I use 12.5 mg of Benadryl more often to help me sleep then anything, however it tends to leave me feeling hung over too. My sleep problems come in spurts usually. The last few nights have been horrible. I'll go to bed dead tired unable to keep my eyes open a minute longer, only to wake 2 hours later wide awake and then been up all night before I can fall back to sleep again. Several years ago I had constant periods of time where I would just fall asleep at a drop of a hat, I learned to carry a sleeping bag, pillow and water in my car in case I ever have to pull over and sleep suddenly. It got so bad that I wouldn't ever take my kids anywhere in the car unless another driver was with me. Sometimes I feel that my sleep problems are due to temperature, either extreme cold or hot. I can't fall asleep if I'm too cold and some nights I'll wake up and my skin feels like it's on fire. A friend of my stopped by yesterday morning (3 am) after work and was lying next to me, he went to put his arms around me and my body heat woke him up, he said I felt like I was on fire. Sometimes my core is sweating hot and my extremities are like ice, go figure. None of this probably helps answer your questions but I would recommend a sleep study especially since you were already thinking about it. You are your own best judge! Take care Steph
  21. Yeah I just found out about the free skiing, my kids want to go! I'll pass on the IV's for some good company See you tomorrow. Steph
  22. Reminder- This Sunday at 3pm Portland Providence, 4805 NE Glisan. Check with the Emergency Room desk and they can direct you guys if I'm not standing out there. I look forward to meeting everyone. Steph If anyone needs a map to this hospital let me know.
  23. OK we're still on for this coming Sunday at 3pm. I hope everyone can make it. I have a comfortable room arranged for us to use during our time. I'm still trying to decide on the best place to meet in the hospital, possibly the ER as our room is close to there and if anyone is late then I can have someone at the desk direct you. look forward to seeing you guys. Steph
  24. I lost my sense of smell many years ago. I saw quite a few doctors about it including and ENT specialist. None of them gave me a good reason for the loss. As for taste, I get this weird taste in my mouth occasionally and it is absolutely disgusting. It can last a few hours or a week, which ruins my appetite because I can't taste anything else. Funny you should bring up the topic because I've been struggling with that horrible taste for the past few days and it's probably been a year since I've had to deal with it. Let us know if you find a good culprit. BTW, I take Neurontin but I had the problem before that medication. Steph
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