Jump to content

MelissaCrystal

Members
  • Posts

    343
  • Joined

  • Last visited

Everything posted by MelissaCrystal

  1. Oh I'm so glad, finally you don't have to stress out anymore. Can I ask what convinced the insurance company though, specifically? I've heard they grant it if the doc makes a good enough case concerning the unpredictability of symptoms and the overall inconsistency and unreliability of the worker (due to the condition). Is this the angle they took, or are you physically impaired with a severe case of Dysautonomia to the point where you have trouble getting around? I'm just wondering what won them over specifically so that I know just how hard it is to get it (I know it's hard in general, but this condition has such a stigma, I have no clue how bad it is with insurance companies). I want to be able to think it's an option for me if I just can't seem to keep from relapsing. I don't want it to be an option, but I don't know what the future will bring and what kind of jobs I'll be able to do, especially if the economy doesn't get better.
  2. I know a lot of working people who use Planned Parenthood when they have jobs. I don't think they require any info from you really, I think it's for everyone, and there's an option of complete privacy. You can use your insurance with them too, if you want, they accepted mine and my appointment was 10 dollars, or was that my birth control? I can't really remember but you can definitely go to them =) Hopefully some people won't be protesting outside of it though...that's always weird, but whatever. Well I definitely know there are some laws protecting Californians with pre-existing conditions, but I'm very bad at looking up laws. Maybe you can find someone to consult you on that subject who is knowledgeable about the CA laws protecting the already insured people. I know that if you miss paying your insurance for 30 days, you can be stuck without insurance because they're allowed to not accept you back because of your condition, but I'm a little confused about how they find out you're insured with someone else. You're supposed to tell them you're with someone else when you're signing up, but I don't really know if they actually go check to see if you're current and whatnot. I really don't know much about that. Maybe there's a hotline somewhere you can call to ask questions about that, hum... Not sure. lol Yes, seeing a new doc is a lot of work. My medical info file is my most organized and detailed possession I own because I've had to get it together for so many specialists.
  3. I don't know where you live, but if it's anywhere near California, or the bay area, Dr. Karen Friday at Stanford University, Palo Alto, is a very good specialist in Dysautonomia and she works with the experts from Mayo and Vanderbilt. She blew me and my mom away with her knowledge and investigative skills, and she had me figured out in under 3 hours. She spent a LOT of time with us. So I recommend her personally if you are more near CA.
  4. Hey! Jade can definitely help you with referrals if you find a specialist that you really want to go to. Dr. Friday has a team of specialists that she refers you to also, so she has a web of people to help with your symptoms =) Also, for your IUD, Planned Parenthood Golden Gate is easy to get to near Van Ness st, and they have another location---and PPGG is very cheap. They do IUD's and it's dirt cheap because of the organization. A lot of people I know just go to them for all their gyno needs. So if you can't find a way for insurance to pay for it, they may be an option. If you explain it to Jade, she may be able to give you some advice on that. Also, I wanna let you know about SF On-call. If you google it, it's a downtown group of doctors that make house-calls if a patient needs it but doesn't want to make a trip to the hospital or Jade. Hospital is really expensive, moreso than SF On-call. Two things about On-call though, 1. You have to pay out of pocket and then submit a claim to your HMO. This might not work with your HMO though, so you might have to just forget this suggestion lol 2. The doctors might not be -that- helpful with knowing about POTS. But they're very smart guys, and I have had such awesome conversations with them. They spend a LOT of time with you if you see them. They've given me so many tips about the medical system and about practical, cheap remedies if I'm not able to get to a doctor. They're fun and so sweet. I get free ambien and sample packs of all kinds of stuff when I go there because they don't want me to leave without at least trying to get me to feel better. Most of the time I just couldn't though, but still---other medical emergencies unrelated to Dysautonomia were always solved by them. Just wanted to let you know about that service in case you need same-day house calls. Expensive, but maybe you can find out if your HMO lets you submit claims without pre-approval. I'm a bit ignorant on that. This might not help you at all, but I chose Blue Shield of California PPO and I haven't had -any- trouble approving stuff with them yet. No trouble at all. I pay around $150 a month for the Active Start Plan 35, and copay is 35 for appointments, and $10 for generic prescriptions. If you find out your HMO is going to be a hassle, I'd recommend them if you're able to switch. I think CA law protects people in that if you're on an insurance plan, and you're paid and current with them, you can switch to another insurance and be protected from having pre-existing conditions. At least that's what I've heard from my doc. If they do try to turn you down, you can challenge it legally supposedly. Anyway, so if your HMO turns out a pain in the butt, a PPO might be an option for you, and mine has treated me well so far.
  5. Wha? I thought a lot of people here get morning sickness. Not necessarily throwing up, but the nausea after waking up. If I try to go to work or take a bus/car to work though, that's when it turns into vomiting, but I'm not working right now because I've gotten worse again. I don't know, I've run into a lot of Dysautonomia people who have morning sickness, I thought it was a common symptom. My Dysautonomia specialist at Stanford (Dr. Friday) also said it was one of the more common symptoms. If you look it up on wrongdiagnosis.com and the MD sites, non-pregnancy morning sickness usually points to nervous system disorders and balance disorders. But I can't find the exact explanation WHY it is attributed to nervous system disorders. Hopefully that clarifies what I'm trying to find out. Specifically, what happens at night to make the morning so bad. Doctors usually refuse to prescribe anti-nausea meds until last resort because of the long term effects, so no on that last question. Nothing else has really worked. Occasionally ginger pills help with my motion sickness, but not the morning nausea. I just have to sleep like 13 hours in order to get past it, but on bad days sometimes that doesn't work---especially when I have insomnia. Honestly, it's probably all caused by my gastro issues, but it's an odd type of nausea that fits more into the "morning sickness" category associated with pregnancy. My brothers say the same thing because it's not like food sickness, motion sickness, nor alcohol sickness. It usually comes on when I'm hungry, and of course morning time I'm starving---feels like I haven't eaten for days. Doesn't go away though even when I eat. I didn't necessarily agree with my Doc about it being related to sleeping and then having your body adjust to gravity again----but I had heard that explanation on these forums by one of the regulars but can't find it by searching (at least easily) so I thought I'd ask. Wrongdiagnosis.com: http://www.wrongdiagnosis.com/m/morning_sickness/causes.htm One possible reason... Causes of Nausea--->Balance disorders And everyone knows we're at our worst in the morning because of the postural change of getting up after laying down for so long... but I'm trying to find out what exactly happens in the body to cause this response.If you google morning nausea w/ Dysautonomia, gastroparesis is talked about a lot. And I also read that gastroparesis is especially bad during the night because the body functions slow down even more, so that can cause morning sickness. But that's not what my doc was talking about---her's had to do with blood and nerves and something. Can't remember. http://dinet.ipbhost.com/index.php?showtop...art=#entry33221 Here is a good thread with a lot of people explaining their morning sickness and the thread starter's is a lot like mine. It's very common among the members here I'm pretty sure, but I haven't read a good article about it yet.
  6. I take part-time online classes only, so I'm not sure that counts as being "able" to go to school. I also have a history of even having to drop online classes due to my issues. I definitely wouldn't take out the loans while I was on the disability---no clue if that is even possible. But in fine print, on the loans I have, if I am deemed disabled by a doc the loans go away until I can work again. So that is an option on the loans I have right now. I just have no clue if there are government programs available to disabled students... probably only for state schools. The more I think about it, the more I'm answering my own question... I guess there is no way to get government supplemental income while going to a private school...
  7. I just need a confirmation of the law, I can't seem to ever do proper research on laws because it's all hard to understand. I can't take out federal loans while on disability, correct? So I wouldn't be able to attend my expensive private college. Are there programs for disabled people for attending private schools, like financial assistance? I'm just worried because I'm not doing well right now and it'd make my boyfriend's life a lot easier if we had more income, but I can't seem to figure out how to help him out because I'm in my last year of private school. I'm pretty sure they won't let me take out loans to pay for school if they know I can't pay them back. Do you guys have any info on this or ideas? Tuition for a semester is like 7k so saving up is impossible.
  8. Hey guys, So all three of my mother's children has had morning sickness throughout high school and still has it college. My brother just tried to go to his first job on his first day and ended up throwing up in the office and being sent home because of his morning sickness and getting up early. I'm really worried about him because he's not a school-goer, the economy *****, and he doesn't have all the symptoms of Dysautonomia so his case would be mild and hard to diagnose if Dysauto was the cause of his nausea. I've been trying to look for the specific reason we get nauseous after sleeping. It has to do with laying down so long, perhaps not having enough fluids throughout the night, and needing to eat right away after waking up or else it's vomit time. It's not postnasal drip, it's probably not hormonal.....I'm looking for a cause that is directly related to nervous system dysfunction and is definitely worsened by motion sickness but motion sickness isn't the direct cause. Gravity is the cause and how it affects our body after laying so long. I guess I am a little more acidic in the morning because it comes out the other end too, very painful, but anti-acids don't really help me. In fact they cause motility issues with me, and my stomach contents don't get digested---more nausea. I've been trying to do research so that I can somehow find relief for my brother. If you guys have terms, throw them at me. If you've heard explanations from your Dysautonomia doctors, try your best to explain them to me. I've had this explained briefly by my doc at Stanford, but I can't remember what she said. I'm really upset that my brothers are effected because my family has always struggled medically and I can't imagine all of us going on temp disability or getting through this without severe financial struggle and depression. We're all prone to depression upon hardship, and nausea is definitely a hardship. I'm worried about my family. I wish something would help with the morning sickness... we can't keep down jobs because of it, and in this economy it's hard to find work to work for us.
  9. The feeling definitely passed for me after a couple a weeks and I felt completely normal in my neck area and breathing etc. Only problem I had with beta blockers is that it lowered my BP and I had less endurance. But sooo many people find just the opposite to be true for themselves. If you're having other issues than the strangulation sensation though, there are many other options and different kinds of beta blockers, for sure.
  10. mdcountrygirl, The feeling of being choked is a side-effect of the beta-blockers. I had this for a week or two when starting Metoprolol and a week or two while I was coming off of it. My doc said it is normal and that the sensation will pass. It sure is annoying though and scary, isn't it?
  11. The dilating drops always make my eyes dilate too much---they actually use less on me now because when they're dilated too much I can't even seem to see straight. Gives me a headache and a little bit of nausea.
  12. I am in the SAME exact situation as you (being dependent on someone else, having it ruin my school/career/goals) and I'm also wondering if I qualify for partial disability so that I can work very little. Why exactly don't you qualify for disability though? Is it just your doctor not agreeing that you qualify, or something else?
  13. Whenever I see coffee on TV, I go crazy with cravings. My cravings are so powerful... but I always regret drinking coffee when I give in.
  14. I envy all of you who can do coffee. It's like poison for me---all my POTS symptoms get bad enough to worry about having a heart attack or super BP crash when it wears off. I crash so bad from it, and during it, my body goes haywire. So weird how POTS varies from person to person.
  15. It *****, because sometimes the postural part of my condition is "better" on the visit. And of course they aren't going to believe me that when I go home, it's worse again. It's different with the weather, with what I ate, with how much activity I just had, SO many things change that symptom. So sometimes my HR only goes up 25 bmp, and sometimes my BP doesn't drop more than 5 degrees. I get so angry, and I feel like I shouldn't be angry about that---I should be happy that it could be a good sign! But I need the doc to know what I'm experiencing at home and sometimes I fail to do that. I'll always keep the medical record that showed I went from 65 to 120 BMP upon standing. I haven't seen that happen at a doc office after that in a long time though. Usually my HR is already high when I get in there so it goes from 90 to 105 or something, which is barely an increase. Oy..... I'm just really scared that when/if I pursue disability they'll use this against me. I know I can work, but only on the right days, which is unpredictable and often leads to me crashing the day afterward if I work that day. Blaaaah. I hope my doctor helps me out there if I need her.
  16. Mine seems to be degenerative.... it progresses and progresses, and then all the sudden I have a good month. Then I relapse and it progresses and progresses again. I don't get it. But I'm definitely not getting better. Some symptoms are getting worse, like my digestive system....
  17. I lost my job that required I sit (which was perfect) and sell chocolate, and now I'm not sure I can find another one that was so easy. I'm having so much nausea lately though, that I'm not sure I'll be able to work. I don't plan on looking for a job until I feel better, and I just recently went back to graduate with my degree finally. I guess I need the definition of work refined-----I can work as long as the job requires me to do as much as I do at home, which is pretty much nothing. =x The job also needs to be okay with me taking unlimited sick days and be late all the time. I don't know if that job exists in this economy..
  18. Yes! This might be me! My veins are VERY small, and maybe they contrict when I stand up or something, or when I don't feel good, and that's why I have SUCH narrow pulse pressure. I hope I'm understanding it correctly. I'm going to bring this up to my doctor, and I'll let you know if it gets me anywhere. My PP is always below 10 when I don't feel good, and it narrows pretty quickly and easily when I'm active.
  19. Mine was 9, but they were able to get it up to 23. Still low, but eh. I haven't had a test in a while though... I'm extremely pale and I burn easily so I usually stay out of the sunlight. These days though, I just haven't been getting out because of my symptoms. Not sure if anything medical is causing my low Vit D, because my lifestyle looks like it can do it. My doc says it is an epidemic in cities and in places with lots of clouds because Vit D levels can fall so quickly and easily. So I wouldn't doubt that Vit D deficiencies are pretty common among normal people these days. At least that's what my doc tried to convey to me. Not saying that's a good thing, just saying how easy it is to get low.
  20. I've been able to lose 20 lbs in 3 weeks and gain it in a week. Mine fluctuates a lot. Lately it has just been going up though, because of no activity and having stomach pains. I'm always wanting to eat to try to make my stomach feel better. I have ulcers and I don't feel good when I get the slightest bit hungry.
  21. So the hospital really couldn't help with the overheatnig? I'm not sure what hospitals are like there (whether or not it is expensiive), but with all this talk of swine flu and whatnot, I think it's better to be safe to keep going there whenever you get bad. People do die from the flu, and us Pots people are vulnerable to bad sicknesses like that. You be careful and PLEASE stay hydrated. If you can't hydrate yourself properly due to fluid loss, go to the hospital for an IV.
  22. Hey guys, I have been getting kind of desperate lately because I'm been packing on the pounds big time just these past few weeks. It's kind of scaring me, like I've lost control of my metabolism. I guess the truth is, I'm not moving around at -all- because I haven't felt well enough. So every meal I eat never gets "used" by my body. I don't eat that much I guess, but it is definitely too much for my energy output and it is the wrong kinds of food. Healthy food, but extremely high in fat. Fat content isn't always bad because it is fuel that gets burned pretty quickly throughout the day, but only if you are active, and I am certainly not. So I read the reviews on Amazon.com about a fat-blocking diet pill called Alli. It doesn't have caffeine or anything that will help you LOSE weight, it'll just block fat while you are dieting so that you won't gain any MORE weight. The only real side-effect that seems to effect most people is loose stools after you eat---supposedly you can actually see the fat and oil in the toilet. The less fat you eat, the less oil/fat and loose stools in the toilet. It is also the bestselling diet pill on amazon, so that's a good sign I think. I'm pretty sure that once I start physical therapy and exercise, I will lose lots of weight pretty quickly, but I will -never- change my diet because it's already pretty healthy and I NEED to eat frequently. I have a combination of stomach ulcers, and extreme sensitivity to hunger, and I just need a lot of food to feel better when I stand up. If I stand up on an empty stomach, the word "weak" barely describes how horribly starving I feel. I feel like death itself if I don't have something in my stomach at all times. I'm thinking that at least with taking Alli, my body won't store some of my intake (25% in fact, according to Alli). Maybe it'll make my diet a little more "normal" when it comes to how much my body is using and storing. Any cautions or advice? Anyone else try Alli or know anyone with positive or negative results? I didn't consult my doctor, but has anyone asked their doc about fat-blocking pills before? Keep in mind that fat-blocking pills are completely different compared to diet pills---sometimes diet pills have caffeine and other things that us Potsy people wouldn't be able to handle, and it obviously wouldn't be healthy for our bodies. But Alli is completely different and I have high hopes. I'll let you know how I handle it in case any of you were wanting to try it in the future =)
  23. I live in California and could NOT switch insurance companies when my HMO did not renew their contract with my local hospital. I tried calling various other companies and NO ONE would insure me. I was told point blank that I was uninsurable given my pre-existing conditions. There is a high risk pool in California but that is very expensive. We ended up joining a high deductible plan because our backs were up against the wall. In another year, I'll be eligible for medicare, so that should help. Oh, I was purely alking about PPOs because HMOs are completely up to companies and a totally different set of laws. I think you can switch to a PPO and still fall under the CA law though, might have to check first though. I've never been able to use my HMO because they barely cover anything =( Wait a sec though, the insurance companies seriously wouldn't insure you for PPOs? I thought the new law protected you of that! I switched from VA benefits to Blue Shield with my diagnosis, no problem. Why is that? My mom explained the whole law to me, and it seemed to make sense.. If I'm wrong and just lucky or something, I really hope Obama changes the system soon. =( I thought CA was protecting people like us these days because of all the health care drama. Anyone know the law I was referring to? I've never been good at looking up laws, I just believe what people tell me =x
  24. Oh no =( If you have health problems or suspected POTS, you should find an insurance without a deductible. In CA there are laws protecting unhealthy people from insurance discrimination, so even with a preexisting condition you can switch insurances----just as long as you don't miss paying a month on your old one. I don't know about other states though. But seriously, the testing is going to really add up, and on top of that deductible it's going to really be a pain financially. No one should have to put up with a deductible unless they don't really need insurance. It'll be worth it to find another insurance without one! I'm with Active Start plan 35, Blue Shield, and they've been treating me well for a while now. Good luck!!
  25. ^I think so, my doc doesn't seem to worry about it. I feel like they should >< It's so uncomfortable, unnerving, and painful.
×
×
  • Create New...