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azmusiclover

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Everything posted by azmusiclover

  1. Dr Grubb wanted me to take EPO when I saw him back in 2000. We just couldn't afford it at the time, but I always wondered if it would have helped me then. This new treatment sounds interesting...
  2. I actually got my MM card when it became available here. I've tried it before for nausea and it helped a lot. Never had an issue. Had it in a different form and had a very significant systemic reaction to it. Had an ER trip. Now even being around it makes me react, I can have a bad reaction touching it. I ended up in the ER needing epi in Vegas after sitting next to someone all day at a poker table who was actively smoking it. So bummed. I hate the random weird allergies.
  3. The Myers Briggs doesn't test those other kinds of things- it's only for personality. But when I have seen various professionals, I've been told more than three times, that the POTS "type" is typically a female, who is a high achiever, perfectionist and we are usually tall and thin with pale skin and a lot of us are dancers, models, gymnasts, or otherwise creative types (I play several instruments with significant classical training and I was a dancer and a model.) Professionals love to group and find types, of course there are always exceptions. I'm an introvert, will always been one and always have been one. My very extroverted best friend in college laughed when I told her that I had finally realized I was introverted. She said, you were always introverted. Now it makes sense why you tried so hard to do social stuff that you hated. You thought you were extroverted. The relief I feel understanding my personality is really awesome. It has allowed me to take a lot of pressure off of myself and that has helped my anxiety and stress. Which benefits my symptoms! Weird results can be common- 1% typically means that you are close to the middle on those characteristics. I'm nearer to the middle on the S/N and T/F but my I is solid and definitive and my J is very strong. Hope that helps understand my post a little better!
  4. Right, Chaos? All my doctors are through Mayo so I don't think that's ever gonna fly for me . My GP refers anything that's POTS related back to the Neuro. I am going to ask again when I see him in May, specifically for the days that I have lots of therapies or doctor's appointments for the kiddos.
  5. I hit that stereotype. I also hit the tall, thin, pale stereotype that's out there. Oh and the dancer, gymnast, musician one too. LOL. I am very interested to see these results!
  6. When I have gotten IV saline in the past, I feel better as soon as the first bag is in. A second bag is even better but once I get past 3 bags I start feeling waterlogged. It lasts about 36-48 hours for me. I asked my neuro about scheduling IV's for me when I have busy weeks with the kids or every few weeks and he was not a fan. He said that he didn't want me to get dependent on doing it, it's really hard on the veins etc. I wish I could have it done. I wish you luck with getting your neuro on board.
  7. Fantastic! I hope it continues and you are able to get there more frequently!
  8. I've actually had chicken pox twice when I was kid! My children have not received the vax for it, and none have contracted it. I was hoping to expose them but it is difficult to find anyone who has it now. No shingles for me (knock on wood)
  9. LOL, there is no such thing as a perfect poll! I put when I had surgery (30s), but I had symptoms since high school. It ****** because I had been symptom free until my gall bladder had to come out. Within 6 months of that, I was in bed, sick, down 30 pounds (and I did not have 30 pounds to lose) and in a horrible POTS flare. I am trying really hard to pull out of it now. It's better than it was, but it's still not where I'd like it to be. I may be fair, but I'm certainly not fat or forty.
  10. I think it can. As things are settling back down in my flare, it isn't bothering me near as much. I also think the time of day depends for me when I get tested. First thing in the morning was my test and my whole body doesn't function then. If they tested me in the afternoon, I bet I would get better emptying times. It wouldn't be awesome, but it would be better.
  11. I didn't have mine out until my early 30s, but I had issues in my teens. You could add a poll question of when issues started?
  12. Thanks Rachel. I imagine if your pacer is waking you up that's probably just as interrupting to your sleep as not having it! I sleep through the night, once I fall asleep which is why it just stinks to wake up so stinking tired!!! I see my cardiologist on Friday. Will update then!
  13. Sounds like a very hectic Friday. I am so sorry about your endoscopy. I can't imagine. I am glad that you found the experience to be a great one. I have had great staff every time I have gone for appointments/testing. My Rochester experience back in the 90s was the same way. They must do something in training stressing patient relationships or something. I hope you recover quickly from your week here!
  14. I was diagnosed with POTS while in college. I ended up having to stop school. I got married, moved to a different climate and then had my first son. I had a rough pregnancy, but POTS seemed to go away. I was able to work, have a couple more kids (both rough pregnancies, and lost several pregnancies) until summer of 2011 when I had my gall bladder out and then got a viral stomach bug on our cruise 6 months later which triggered my POTS again. I hope that it will go away again! I miss having a normal life but thankful for the time I had that was "normal"
  15. When I was pregnant with my daughter and had severe hyperemesis, I tried explaining it to her dad. I told him to imagine the worst hangover he's ever had. The headache, the feeling like you are going to hurl at any movement, any second, no energy etc. Then imagine feeling like that for months. He didn't get it. I left halfway through the pregnancy, cancelled our engagement and everything. Best move I ever made. In all seriousness, it is so important to have support of loved ones to help cope with a chronic illness. I am so sorry that you are struggling with unsupportive spouses/partners. It's hard when it's something that isn't understood. "Everybody" understands a cancer diagnosis and rallies to support that. But when it's more undefined and you look "healthy" it's challenged. You are an attention seeker, drama queen, mental case, lazy, etc. I have it with the kids autism too. If you'd just discipline them, they are just being bratty, it's just a phase, that's normal, my kid does that too, they talk so the doctor must be wrong, it's just a fad diagnosis. Blah blah blah. Yeah sure, x3 kids? with my history... sure it's a mistake! Thankfully I don't buy into any of that garbage and it has served me well where they are concerned! I'm sorry some of you aren't getting support from the people you want to get it from. It's not the same, but I support you! This forum supports you. Hugs and hang in there.
  16. Wow! I am so glad they got you into the GI specialist then since you have Celiac. My friends who have it say they feel a world of difference when they eliminated the gluten. They can always tell when they accidentally get some in their diets. There are so many good celiac products now too. Just remember- you can write off the differences on your taxes as a medical expense since the cost of celiac/gluten free items are higher than general food costs. Good luck with the scope. Total bummer about the plasma test. Those needles are brutal. Traffic is pretty bad on the 101 at 7am, just so you are prepared. Especially heading back to the clinic from the hospital. Taking side streets is about the same. If you'd like some alternate routes if the freeway is just jampacked, let me know.
  17. My extended family goes back and forth on "getting it" Like this weekend, they are heading back to their regular home, they winter out here. Yes, of course I want to see them. However, I did just spend 3 days in the hospital (did they visit? No.) It takes me so long to get back on my feet, especially having my special kiddos. By Wednesday it's the harassing when are you driving out here to see us before we go? (an hour and I haven't driven since I passed out because I haven't felt well!) I keep saying, I have to take it day by day. Today I was lucky, I was out of bed before noon! My husband knows I am sick. He met me during my remission and then watched me decline with the relapse. He was really angry about it for awhile. Taking him with to my Mayo appointments and doing some couples counseling about it really helped. He doesn't always get it to the degree I'd like him to, but I know he tries. It frustrates me to no end to hear the stories about people being discriminated against because "we look ok" I deal with that all the time with my autistic kiddos. Just because they walk and talk doesn't mean they can't get run over by a car in the parking lot because they can't pay attention! Do people think service animals are free? That they just hand them out for no reason? Here, you need a dog because you look good. UGH.
  18. I also get exhausted after I shower. I used to love showers- I would sing and have some time to relax. Not so much anymore! It's been better since the heat hasn't kicked up too bad here, but give it a month or so and it'll be really tough. My shower has a built in tile seat/ledge so on my bad days I sit there with the hand held shower thingy. My allergies are awful and I can't find my generic CVS brand claritin redi tabs. I think they stopped making them and that really makes me sad. Regular claritin made me feel really awful but the CVS brand was fine in the dissolving tablet. I can't find them anymore. You are not alone!
  19. This kind of patient experience exists??? I am so jealous right now. How'd today go? Libby, I was pretty shocked. I knew they put their stuff online (I always read the day after my appointments) but I didn't know it would be that fast. Sure enough, there it was. I was a "happy" patient. We should all be so lucky!
  20. It makes sense, as I went through a lot of that with my daughter- no one wanted to give her a diagnosis of anything! She's still "undiagnosed with an unknown genetic syndrome of inborn error" at age 3. I keep telling the geneticist she looks like she has autonomic issues to me. It does make a difference though in how we are treated so I think it is important to have an accurate diagnosis. I may seek a second opinion on the EDS front.
  21. Unfortunately it seems like they have a hard time diagnosing it. I have a high Beighton score and I have had 4 miscarriages, 3 premature births, MVP, 7 sets of ear tubes, multiple surgeries for endometriosis etc and the rheumatologist still calls it "benign joint hypermobility syndrome" I am so sorry that the geneticist won't be more definitive. They just don't get that people have a need to know what's going on and want to have a reason for why their body is doing what it's doing!!!! Sorry I don't have much help to offer on this, but I have complete understanding of your frustration.
  22. I'm free Thursday afternoon. I'm about 15 minutes from there. Quick is ok, because you'll probably be tired. It's always nice to put a face with a name You can call me when you are done and I will pop over and we can just grab something there. That way you won't miss the shuttle. And if you are too worn out, no worries.
  23. About results- this is how awesome they are... I have an online patient account, and as I was waiting in the ER, I was able to check my blood work that they had just drawn and after I was admitted I could read all the doctor's notes (same day) and testing that they were doing. I had a couple of questions about my blood work while I was in the ER and it was answered by the ER doc!
  24. I'm close to the Mayo hospital if you felt up to meeting for dinner or late afternoon snack/beverage. Their cafeteria isn't bad if you didn't want to go off "campus" Maybe some of the other N Phx/AZ girls would be able to join? I can send you my phone number privately if you want to meet up!
  25. I can vouch for the tummy bug being just plain awful. Put three members of my family in the hospital including myself! I had the cold thing a few weeks ago so I was already run down. This winter has been a bad bad bad germ year. I hope you feel better soon. Rest, fluids, fluids, fluids.
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