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UnicornIsis

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  1. Hey Everybody, Its been a while since I've been on here, so probably nobody remembers me. This post was originally written for posting on a forum for the other main disorder I have, but I re-wrote some of it to be more understandable here and more geared towards this forum. I'm looking into something for myself and I'm trying to research it as much as possible before I make a decision. The topic for those that are wondering what I'm talking about finally is: Service Dogs/Service Animals. In additon to my NCS and POTS I have a few other conditions, such as EDS Hypermobility Type. The NCS, POTS, and EDSH as I'm sure all of you know, cause me to have trouble with balance sometimes, and with joint locking or popping out of joint. Its not often, but its enough to use a can sometimes, but not often. I also have a neurological movement disorder call Generalized Dystonia. I have spells that look like grandmal seizures, called GD Storms. I also have spells that only affect certain areas of my bndy that look like petitmal seizures and are called simple reactions. My GD not very progressed, I don't have permanent postures but I do get simple reactions and Storms about once every two weeks to once a week. I'm home alone, which I'm not supposed to be due to the GD and NCS, and POTS, but there's no choice. My husband is in the Navy, so we don't live anywhere near family and TriCare won't cover anyone staying with me. Until the last 3 or 4 months we've always has a roommate who somehow managed to be on the opposite schedule as my husband, so there was usually somebody with me most of the time if anything happened. But lately when I've had reactions and spells I'm by myself and its a little scary. Most of my simple reactions are my neck, jaw, eyes, mouth--as in I can't talk, right shoulder, right arm, and sometimes breathing. And usually when I have a simple reaction, even though the rest of my body isn't spasming or locked, I don't have control over it somehow. I'm wondering if anybody else has a service dog/animal and what the dog does for them? I would also like personal opinions of what any of you think the dog would be able to do for me, if anything. Thanks, UnicornIsis
  2. Hey everybody, I need to find an NCS/POTS doctor down here in Jacksonville, Florida or near it. Someone to treat me. The only ones reccommended on the adult sites are docs at Mayo. But from what I've heard and been told, the Mayo docs just diagnose you, they don't treat and maintain you? Is that so? Also does anyone know of any docs that aren't at Mayo? Thanks UnicornIsis
  3. Okay, I'm probably gonna get disagreed with or yelled at even. First I haven't read the articles. But here's the deal as far as I've been told my my doctor. DeCosta was the frist Doctor who documented all or most of the symptoms of NCS and POTS and the like. Yes he HAPPENED to be a Civil War doctor treating Civil War SOLDIERS. Even among civilian docs there are still tons of different names for this. So naturally military docs are going to come up with their own names just like the civilian docs did. And its not that common for military docs to colaborate with civilian ones or the other way around. And the populations they were seeing the most were ones in HIGH STRESS areas/situations that happened to be soldiers because they don't treat civilians. Its completely normal that soldiers, sailors, and airmen would develop it after going to war, because that's a major stress, and that's one of the major reasons most of us develop it as civilians, from some MAJOR STRESS. They most likely already had the tendancy to develop it, but needed something to trigger it, the way a car crash or mono or pregnancy or some other major stress tiggered it for most of us. Its what Michael J. Fox said about MS, you're born with a loaded gun, and something happens to trigger it. I'm sure for some of them they developed it from chemicals and toxins they were exposed to because those things affected the ANS so of course they'd develop the same SYMPTOMS as the rest of us because its the same SYSTEM that's affected. Its like if you break your leg riding your bike by accident and some bully breaks your leg on purpose because you forgot your lunch money. You're going to have the same symptoms from different causes because its the same thing/area/system that's affected. And jsut because you're not military doesn't mean what they do or the research they come out with doesn't apply to you. That's like saying I AM military to the research and treatment civilian docs do for this don't apply to you because you got sick while you were in the military even though you didn't go to war. Okay, done with my thing here for now. UnicornIsis
  4. I just got a chance to read this and wanted to add my 2 cents. I got sick at 19, maybe eariler, we're not totally sure and have NCS primary and POTS secondary. My mom who is 54 now started having symptoms when she was in the middle of menopause about 3 years ago. My doc said its normal for you to develop it after menopause if you hadn't developed it already and you were going to. He said any major stress could make it "active" as I say. From hitting puberty, to graduating, to college, to getting married, to buying a house, to divorce, to menopause, to any other disease or condition that appears, or even the death of a loved one. Any kind of good or bad stress. And my father's grandmother had it. She had it until she died. I don't know what age she was when she died, but it was old enough to have 13 children and see the youngest to the age of 13 at least, because I know of a picture of them all standing together and the youngest is 13 at that point. It was their 30th Wedding Anniversary I belive. I don't know when she developed it either, but definately by the time she started having most of her kids. They all remember it from when they were little and most of her grandchildren, the older ones, remember it too. So I'm pretty sure you can develop it at any age. And that's what my doc said to, that there's any time and age you can develop it. Hope this adds more help to your case! UnicornIsis
  5. I bet its the stone. My engagement ring is Tanzanite. I like turquoise and light blue colors and its perfect for me. I like the bluer one, as opposed the the purpler. And yeah, its sorta like the country because the stone was named for the only place it occurs, which is Tanzania. I hope I'm spelling all that right. UnicornIsis
  6. Also, MVPS is generally considered the same as NCS, and POTS. So check out the downloadable book on the www.NDRF.org website. All of my docs have liked that so far and I can even understand it pretty well. (Although I have to be honest, I STILL haven't read the whole thing. ) UnicornIsis
  7. MVPS --- Mitral Valve Prolapse SYNDROME, as Rebecca said is considered a type of Dysautonomia. Most docs now call MVPS either POTS or NCS, most say its POTS. The confustion started when a doc who wasn't communicating with the rest of the community who handle diseases/syndromes like this, decided to try to make a name for himself by calling it something different and writing a book and several medical articles about it. Most of the docs who treat and specialize in Dysautonomia don't call it MVPS, but a few still do. Also yes, there ARE docs who don't believe in NCS, POTS, MVPS, or any other type of Dysautonomia. Mostly because there is no test that they can do and say YES you have it, NO you don't, HERE ARE THE MEDS, now you're all better. The cardio that originally diagnosed my MVP with NO regurg, still doesn't believe it exists, even though the doc that diagnosed me at Johns-Hopkins is the one that trained her! Needless to say I don't see her, and my Dysautonomia doc, who is a cardio, diagnosed the regurg which I DO have. So what you're finding out isn't unusual. Check out the book The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide (Paperback) it does a decent job of talking about Dysautonomia and explaining what happened with the naming. Also check out the book on the NDRF.org website available for download. Hope this helps, and no you're not crazy, but you DO NEED to find a good dysautonomia doc. UnicornIsis
  8. Doc A. said at some point I should have testing to see if I have low blood volume. Now that I've moved and no longer see Doc A. on a regular basis, I'm slowly bringing my new doc up to speed on things and at the same time, only telling him what he needs to help me and not going to him with every little thing like I did Doc A. And if little things are bothering me, I either call Doc A., or save up several for when I go back to the new doc. He's just an internal med doc at the base hospital, not anything relating to Dysautonomia and hadn't heard of it before. But he's great and really willing to learn and try to help me with it. He's also great about saying when he's in over his head and sending me to a specialist or someone else he thinks might be able to help. So I'm pretty lucky. The last appoinment was more of a check-up and to get official permission to get off the new med for something else I was taking that was lowering my blood pressure too much. Once that was taken care of I asked about getting tested for low blood volume. I already have hypokalemia--low potassium, which I'm on potassium suppliments for. So he said since my electrolytes are already out of wack, extra low most of the time, it probably wouldn't be able to tell us much and would come back negative because my suppliments would put the level back up in normal range. And it had to be low for a positive test. All it was was a short blood test. They only drew one vial and I got the results a few days later saying that it was negative. When I called my doc back he said that I probably had it but he wouldn't take me off the suppliments just to get a positive result. Which I agree with unless its absolutely necessary. He was on vacation for a month and the doc handling his patients while he was gone got my refil prescription messed up and only had me on 8 MEQ's twice a day instead of 10 MEQ's twice a day. Believe it or not, but not getting those 4 MEQ's a day has really made me tired and have no energy. There's bound to be some other test and from what some of y'all are posting it sounds like there IS another test. Can someone tell me what its called so I can tell my doc or describe it so I can tell my doc. If you describe it, I'll probably just print what y'all write and let him read it. Or send me to a link that I can either print or send him too. I'm not having much luck searching with google. Thanks, UnicornIsis
  9. May I suggest taking a semster off OR taking less classes during the semester. Right now you need to concentrate on getting medication straightened out and trying to get some kind of quality of life better. I took a semester off and it really helped me. I haven't been able to go back full time and have only been able to take one, 1-night a week, class a semester since, but that's better than trying to take a full load and not being able to do ANY of it. Right now you need to focus on your health. If you don't get your health straightened out first, you won't be able to do any classes or clinicals while you're sick, or at least you'll have a lot more trouble. From what it sounds like as bad as your symptoms are, if you don't get them under some kind of control you won't be able to do any classes or clinicals or you'll definatly fail them. That's not what you're working towards. So I'd suggest take some time off, either a semester of just less classes for the semester and get yourself a good doctor. UnicornIsis
  10. Frist, I'd like to say this: JUST BECAUSE YOU HAVE A HANDICAPPED PARKING PERMIT DOES NOT MEAN YOU ARE DISABLED! I've had them before when I was in a leg/foot cast and on crutches because of leg surgery and because of sprained ankles. Does that make me diabled? I don't think so. I just means for that some reason or other I need to park close to the entrance of something. Now with that rant out of the way. Swallow your pride and get the **** thing. I've learned that if I need something to help keep me from getting sicker then I NEED it and I'm going to USE it. I grew up in a small county, the entire county went to 1 high school and it had less than 500 students in all 4 grades. So everybody grew up together and knew each other. I was not popular and mostly a loner because I was one of "the smart kids" and my brother was MVP of the football team which is LIFE there. So he was one of the most popular people in the school even as a freshman. Let me tell you, walking through Wal-Mart on a Saturday night with my CANE at 20 and seeing my brother's "friends" pointing and laughing loudly at me was not the most energizing experience. And neither was getting out of the car at the mall with my mother having parked in the handicapped space because I couldn't take the heat and all the walking across the LONG parking lot and watching the "popular girls" from my year walk by laughing at me for paking in the handicapped space at 20. Well guess what. I NEEDED those things so I USED them and I held my head high and walked past them as if I didn't notice them. If I could go through all of that, you can **** well get the parking permit so you can save yourself from getting so sick from heat and walking and having to lay down in your office before you can work. Sorry, I don't mean to make you mad, but you really hit a nerve on this issue. And everybody else, yes I know I'm being mean and I apologize to EVERYONE already for being mean but sometimes something hits a nerve and I can't not say it. UnicornIsis
  11. I see Dr. Hasan Abdallah. He's a pediatric cardio and he REALLY knows all of what we're going through. After hopkins said "go home I'm done with my study so I'm not treating anyone anymore" I found Doc. A. He is the reason I have the quality of life I have now. His website with contact info is: http://www.childrenheartinstitute.org/index.htm And there are 2 other doctors in his office who do NOT specialize in Dysautonomia. Don't see those. And you may have to re-schedule your appointment several times to actually get to see Doc A., but its worth it believe me. My mom and I used to drive (well me riding) 3 to 3 1/2 hours each week to see him, and that was one-way. IT WAS WORTH IT!!!!!! We don't make the drive anymore, because I moved out of state. But believe me, he's worth it. And he'll treat you even if you don't live within driving distance of him. Please give his office a call and SAY: "I'm a POTS patient." When you ask for an appointment time. Also if you don't want to see him or want someone closer to you, call DYNA Kids. Hope this helps. UnicornIsis
  12. My mom had to stay home with before I got married. She got called for Jury Duty twice I think. Both times she had my doc write a letter explaining my condition and that she was the primary daily care-giver, that I was not supposed to be left alone. She mailed it in and that worked just fine. UnicornIsis
  13. Okay another stomach/GI post, but the first one from me. I ended up in the ER the other night NOT for severe heartrate/bp, breathing trouble, bad shakes, or dehydration. Usually those are the reasons I go, only when I have trouble enough to need some kind of medical help, otherwise I just ride it out at home. Well the other night was different. I ended up there with stomach problems just in case I had eaten something bad and because I couldn't stop burping and had trouble throwing up all the way. GROSS PART COMING (I did the first time okay, but about 3 or4 hours later when I needed to again, it came all the way to the back of my throat and went back about 5 or 6 times, so I was a bit worried about that). Here is my question. I'm wondering if anyone else gets this. When I'm hungry I have to eat right away, within about 5 to 10 minutes depending on the time. If I don't eat right away I start burping. And sometimes I don't know that I'm hungry or that I need to eat until I start burping. And it hurts when this happens. If I don't eat within about 5 minutes of when the burping starts, I get really sick and it hurts really bad. And if I eat too much I can get sick and make it hurts more too. Most of the time I can catch it before it happens because I eat about 5 or 6 small meals a day about every hour to 2 hours or so. But if I don't its bad. Example: We can be in the car driving somewhere, say Wal-mart which is abut 20 minutes away (the Super Wal-Mart anyway) and I start burping. We have to stop at the closest fast-food place or even a gas station if its really bad and get me food to eat RIGHT AWAY or I get worse and get really sick. Its as if my stomach doesn't trigger my hunger reflex until its just about to start digesting the stomach acid, or until it has already started. The doc in the ER seemed to think this was all acid-reflux or GERD. Does this happen to anyone else? I never had this problem at all before I got sick and its only happened with in the last 2 years, which I guess is most of my sick time since I got sick about September of 2002 we think and got really about about Spring of 2003 and especially early winter of 2003. Does this sound familiar to anyone or anyone know what this is? I'm going to make an appointment with my regular doc for sometime next week as the ER doc suggested. Also, the doc gave me prevacid. They said I'm supposed to take it as soon as I get up and on an empty stomach and not eat or drink for an hour afterwards. HOW DO I DO THAT?!?!?!?! I mean right now, I have to eat as soon as I wake up because I'm hungry right away and I can't not eat because I get the burping and get sick. And I usually take my pills right away too, if I don't I feel aweful until I'm able to take them. Anybody that takes this have any advice? I'm wondering if taking it at night right before I go to sleep will work better since I don't eat or drink after I go to sleep. Anybody who takes this have any ideas or suggestions? P.S. I just realized something I should probably add. I've noticed every night (the last 2) since I had to go to the ER I burp for a while aftr laying down for bed. And it hurts when I burp. That's weird for me because usually when I burp, it doesn't hurt any. Thanks, UnicornIsis
  14. One other thing that nobody else has seemed to mention but helps me. I DO NOT SAY POTS OR NCS. I say the whole name out long. They're not going to know what either one is most times, so saying or writing out (as I do) the WHOLE NAME makes them pay more attention. I have never been drug tested for any of/any times I've been in. I HAVE been pregnancy tested every time. I asked them one time why I was being pregnancy tested since I was on my period and that was the reason I was in, I was too dehydrated from loosing so much blood. They said its routine to test EVERY woman that comes in over the age of 10/11 or 13 depending on the ER for pregnancy. The reason it is, that you could be and not know it or you could be and know it, but don't want to tell whoever brought you in so you won't tell the ER staff. And they reason they need to know is so they don't give you any medications that could harm the fetus. I just figure hey, its a double-check that I'm right and since my family and my hsuband's family (all the MANY extended parts too) keep asking us if I'm pregnant yet, I tell them "well the last time I went to the ER was ______ and it was negative then" and for some reason they believe the ER test over me just saying it! Anyway, just wanted to add those bits. Hope this helps. UnicornIsis
  15. For me the words IRREGULAR HEARTRATE seem to get me seen faster. Keep in mind the normal wait for an ER visit is 2-3 hours to be seen as long as there aren't overloads or anything like that. My dad was an EMT, my aunt was a Cardiac Tech, and many friends are as well. They all say the normal wait is 2-3 hours, mostly closer to 3. Taking the bucket for vomiting will help too. But you alsmost NEVER get seen the second you walk in unless you're bleeding badly. Also I have 3 pages I carry with me at all times and a photocopy of them too to hand to the triage people for them to keep if they don't want to make their own copy. The first page is "Medications" and then all of them listed, name, dosage, mg, and how many times a day. The second page is "Conditions" and then all of them listed. The third page is "Allergies" and then all of them listed, medications first, then latex and adhesives, then food, and then things like wool and seasonal allergies, insect stings, poison ivy. You can also add a fourth page "Doctors" and then list all of the doctors he sees regulary or specialists who follow him, their phone number and office info, and their on-call number if they have one, and who to call first if the docs there are having a problem. I've noticed that for some reason they pay more attention to it on Notebook/Computer sized paper in Large Writing than on a small wallet card. I've tried both and they always pay attention to the Large papers, and most of the time just browse or ignore the wallet card. Also I try to joke with them or if I can't I get my husband to. I wait till they're reading the 2nd page, Conditions, and then I almost always say: and if you've hard of/or know all of those you'll be the first person. And say it jokingly. That ususally gets them because even if they THINK they know what NCS and POTS are even though they don't really, most have never heard of EDS -- Ehlers-Danlos Syndrome. I've had to explain that one every time. I try to joke and be lighthearted through out the whole triage part, it really seems to get them on your side or at least more willing to listen and help you. And the same thing with the nurses and docs once you get back there. The calmer and more relaxed you are the nicer and easier to deal with and more willing to listen and give you what you want they are. Hope this helps. UnicornIsis
  16. The reaction you describe is the same I get when I'm allergic to most medications, especially if they are given as a shot into the blood stream or put in the IV bag. So you are allergic to something. If you get it every time you get the IV fluids, it may be something in the fluids, or something that is used to make the bag or tubing. Also the constant sleeping... that's a reaction I have when I'm allergic to a medication, usually administered into the bloodstream. You should DEFINATELY talk to your doctor RIGHT AWAY about this. And mention to him/her about possibly being allergic to something the IV solution is bad with or the bag or tubing is made with. It might also be some part of the needle or the tubing used to hold your arm open for the IV. Just some thoughts, but definately talk to your doc about it right away. UnicornIsis
  17. When I actually pass all the way out I get that feeling several times before I can finally wake all the way up. Since I've been on meds, I don't pass all the way out, but I still get that feeling sometimes when I have a bad spell and have toruble breathing or heart rate is really wild or if either or both stop, and especially when I come really close to passing out. Its as if I'm trying to wake up or get fully conscious but my body doesn't have enough oxygen yet so it says No Way Jose, go back to sleep, or don't become as conscious as I'm trying to. Oxygen REALLY REALLY helps when it happens, so that's part of what led me to that explaination. Hope this helps, UnciornIsis
  18. I do, but Doc A said you have to control everything else before you can really start seeing results for the Dysautonomia. So I'm on 2 types of allergy meds and an asthma med. Singulair for day and zyrtec for night. You sould talk to your doc about getting on some allergy meds.
  19. I'm a DYNA member and I'd like to say thank you to everybody that sent her in the direction of DYNA. Only thing is, parents can't just join the parents forum. Their child has to be an active member of DYNA for the parents to be able to join the parents forum. Definately read some of the stories, but remember a lot of them are about finally getting diagnosed. THANK YOU SO MUCH for caring about your step-daughter and wanting to find out more about it for her. She may not say it now, but it really means a lot to have a parent who understands or is at least willing to try and a parent who is willing to treat them as a kid with an illness instead of an illness that just happens to be part of a kid. UnicornIsis
  20. If you don't already, try using a cane when you go out. I use on in the winter and the summer. It helps me walk longer and get less tired. Something that really helps me is that I eat between 5-6 small meals and snacks a day. And I have a salad almost everyday. Partly because I like salads, partly because I crave them -- my body does, and partly because at least that way I know I'm getting veggies in. Its also soemthing easy for me to make and it doesn't require cooking and heat both of which I have a lot of trouble with. So since I eat so frequently, I take snakes with me and while I'm out if I need a pick-me up or are starting to feel down or if I know I need to be at highest attention for something we'll stop very soon before we get there and I'll get a large fry with lots of salt. The salt and fry works as a double help, 1 is food and 2 is salt to get my bp up a little. And I sit most of the time with my legs up, either stretched out or indian style. This really helps, especially in the car. I also wear sunglasses in the car even if its not really bright, they still help my eyes. I also got a very large brim hat and wear it any time I'm outside, even waling back and forth to the car. This really helps. Maybe if you adapt your going out time some and show him that you can take it sometimes and don't push yourself on the days that you can't he'll start being a bit more understading hopefully. Also something I know from my parents dealing with my brother, you son should have and IEP. If he's at a special school as I think you said then I don't know if he still has one there. But either way it should be part of the IEP or it should be part of what his teachers do that they send home reports to you about what's going on with him. There shouldn't be no contact or no idea of what's going on. If the teacher won't agree, then go to the principle or whoever is over his/her head if he/she won't agree either. Keep going until it happens. I hope this helps. UnicornIsis
  21. Hey, I'm a Navy wife, so to be honest I'm surprised they haven't medically discharged you yet. I'm in the Navy's EFMP -- Exceptional Family Member Program and out of the 5 categories, I'm Cat 4. May be a Cat 5 when I turn in more packets from more docs. Your profile says your husband got out and stays home with your son. Is it possible for your husband to work and you stay home with your son. Even for him to go back in if he wants to? If you stayed home with your son and your husband went back in you'd have the steady paycheck. Or even if he doesn't go back in he should still be able to find something. Especially if he starts looking now before you get out. That is all assuming that you want to get out and he wants to go back to work. That may not be an option for you. I've learned that with my parents I tell them most of how I'm really feeling. My husband I tell all. My parents I don't tell if I'm really bad until I'm out of it now because I don't live with them anymore and my mom gets very worried and wants to fly down here. My extended family and my husband's family I tell them I'm feeling okay today, or I'm tired today or today's not a good day if its bad. I don't go into detail, but I don't just say oh, I'm okay either. If they ask then I tell them. And most of the time they're genuinely(sp?) asking. And if they're not those responses work well for them too. If I just say oh, I'm okay, I feel like I'm lying and I feel bad. And I figure if they're going to ask, I'm going to tell them and then they'll learn that when they say that, its not just a greeting and they learn to think about what they say and other things. I feel it makes people think more and helps them understand about us more. I hope things get better for you soon. You're really lucky that you have such a great boss. Make sure he/she knows how much you apperciate it. Hope this helps. UnicornIsis
  22. I got married in September and my husband is in the Navy. At the beginning of next year he'll re-up meaning he'll sign a new contract with the Navy for 4 more years (or more). He'll also get new orders at that time meaning he'll be changing the command he's assigned to and possibly his job and most likely we'll be moving to a new base. He'll also go on shore-duty meaning for that 3 year job time he won't be going on deployments, so he'll be home all the time. We had originally said that his shore-duty would be the time to try to have children. But over the last several months, since Nov. really, we've been thinking about and talking about it a lot. And we've basically decided not to have children. The reasons being: 1 -- I got NCS and POTS from both sides of my family, mom's and dad's, that's why Dr. Abdallah thinks I got it so bad because it was on both sides of my family we now know. So that means that most likely I'd pass it on to my children. 2 -- Since I developed it, that means they might or probably would too. And I know what I've gone through and don't want to put them through it too. I don't want them to suffer the way I have, especially since we know they could develop it. 3 -- I'm as good right now as I've been since I got sick. Mostly. Even at the best time I haven't been great or anything. As well as I'm doing right now I can't take care of the apartment by myself, or even with my husband's help very well. And I know that I can't take care of a child, much less a baby right now, especially if I can't take care of myself. And it wouldn't be fair to the child to have a sick mom, just because I want a child. I'd like to ask those members that are married and those that have kids how did you decide to or not to have children. If you did or are going to, how did you deal with the possibility of passing it on to them and of them developing it? Is there a doctor you talked to about it? Especially a doctor who knows about Dysautonomia? What did they say was the possibility of the children developing it? Are you able to take care of your children? I mean are you able to do it on your own or do you have to have help most of the time, such as your mother or mother-in-law or sister or friend or neighbor? If you have more than one, I assume its harder but how do you deal with having more than one, I mean being pulled in 2 different directions all the time? How do you keep up with more than one? Right now we're trying to figure out how to solve the problem of me not being left alone. There was always someone home with me until we got married. We were hoping I was doing well enough now to be okay without someone home with me when my husband is at work. Unfortunatley that's become untrue lately. I do need someone with me in case something happens. I also have a movement disorder that we're trying to get diagnosed (I think its another part of the Dysautonomia). Between that and some of the more severe symptoms of the NCS and POTS we've decided that I shouldn't be left alone because I can't call for help when I have a problem and there's no warning of when I'm going to have a problem or spell. I can't really justify my and my husband's want for children when I can't even be left alone. This has been a very hard decision to come to and as you can tell from this post I'm still struggling with it, especially since I've always wanted kids, even when I was little. I even worked in a day care in high school and took the 2 year program to get a certificate for it during school hours. I even took triple the class time the 2nd year because I enjoyed being there so much and because the teacher asked me if I'd supervise the other students in the program on the 2nd day of class when she was teaching other of her classes, no other student did that or had done that before. I helped raise all of my cousins along with my 2 other female cousins the same age as I am -- that was a LOT of BOYS all at one time to keep track of!! So I've always wanted kids and this is a really hard decision for me. As some people I have talked to have suggested there's the option of adoption. I'm perfectly willing to do that and had always thought that I'd probably like to have both "natural" children and "chosen" children. The problems there are me not being able to take care of them still, and it not being fair to have a sick mom just because I wanted kids. Also I haven't looked into it, but I don't think many adoption agencies will want to give a child to someone who is chronically ill and has to have constant supervision as I do. If we decide to go this way, I'll defiantly find out if they will or not. So far since we'd decided to wait until shore-duty to try for children we've been taking precautions for it not to happen. My family is EXTREMELY FERTILE, I'm the first girl NOT to have gotten pregnant wtihin a week of being married or by accident before then. And most of the time birth control methods, even using more than one at a time, don't work for us. 8 of my cousins and I were born using brith contorl methods of one form or another. Out of the 4 left, they started trying for one and got three within about 3 and 1/2 years. The last one the parents had fertility problems which they've never figured out. The only reason there aren't more of us is that one aunt got sick after her 3rd and couldn't have any more, one couldn't stand any more boys after her 3rd, the one had fertility problems, one couldn't stand my uncle after their 3rd - her 5th, and my mom said 2 was enough. I guess I'm hoping that somehow I can convince myself that having kids is the right thing to do in spite of all the reasons not to. And my husband is VERY supportive of me in this. He agrees with all of my reasons not to, but he also knows how much I want to have children and he wants them too one day, even though he tells me when I ask him, that if we decide not to have them it will be okay with him. When we discuss the upcoming change of duty station and change of job, going over the options we have he always mentions how that particular option will affect having children, such as this one won't be good becasue he'll be away a lot, or that one will be good because he'll have regular hours and we might be close to family. So its a decison we're having trouble making. And I guess I'd like input and experiences from the members that have gone through this decison one way or the other already. And we've said that whatever we decide if circumstances change in the future, such as if I get a lot better and stay that way for long enough 6 months to a year or so, then we'll change our decision and maybe try for children then. Thanks for your time and for reading and anything you might have to offer or say. UnicornIsis
  23. I don't get hyper or high before a crash or spell, but I do have adrenaline(sp?) rushes. I'm on paxil 5mg once a day to help counteract it. I get the high/happy feeling, lots of energy -- can't sit still or stand still, can't stop laughing. I usually get tired and a little down after it goes away. If I sit upright it helps stop the laughing, if I lay down, I can't stop the laughing. Hope this helps. UnicornIsis
  24. My normal temp is 97.6 or a bit lower. My dad and brother neither of which have this or anything else, their normal is 96 and sometimes as low as 93 for my brother when he was playing football. When I'm actually "sick" and have a fever, like you can touch my forehead and KNOW I have a fever its barely near 100 and usually only ever gets to 101, its NEVER at the range for an actual "fever" according to the docs. Hope this helps.
  25. Hi, A lot of us will say we're not able to work. But you have to remember that most people that have this and ARE able to work either haven't been diagnosed becasue its not bad enough for them yet or they just haven't gotten the diagnosis yet. So those people won't be on here most likely. And the people that ARE on here are mostly the ones that aren't able to work because we have more time to post and need places like this more. So you're already getting a biased answer just by asking your question here. I got sick at 19 in college. It was the middle of the semester. I went home at Thanksgiving Break and didn't go back until next semester. I was feeling better then when I had left but I never really got back up to full strength and didn't really realize that at the time. In the middle of the next semester a bit before Spring Break I think, is when I started passing out. I went home to try to find out waht was going on. I went to doc after doc after doc. And finally I decided not to go back for the rest of that semester just so I could make it to doctors appointments and try to find out what was going on. By summer I still was no closer to a diagnosis and made the decision against my parents wishes to stay home the next semester so I could concentrate on finding out what was going on. I never went back to the college I was attening 2 hours from home. Once I was diagnosed and I found Doc A. and I got stablized I was able to start aking one class a semester, a night class that only met once a week, at the local community college. I had to have my mother with me and some of my major medications, the dosages were adjusted so I got the maximum effect of them at the beginning of the class. I also had certain accomodations made. I was allowed to keep my legs up in another chair. I got to class 15 minutes early so that I was able to calm down from walking the stairs and exerting the energy of getting into the class and getting my mind focused and ready to learn. By the end of the class I was having trouble focusing. I'm also ADHD like most of my family. I learned while still in college that if I kept a thing of silly putty in my hands to fidget with I could concentrate on the professor. So I carried silly putty to class and used the heck out of it by the end of class just so I could concentrate long enough to find out what the next assignment was and go home. Then I'd go home and crash. We'd get mcdonalds or some sort of fries on the way home so I could make it home, but most times I slept on the way home. It was over an hour there each way. I'd eat a lot of salty food once I got home and sleep a good 12-16, sometimes 18 hours. I wasn't able to do much else when I was taking classes. I can't stand up for very long and I can't even sit still for very long before having to move around a bit. We know I can't work right now. I just don't have the energy or concentration it would take anymore. And let me say, that its not, not being smart or not being able to concentrate from the start. In high school I had a 4.0 GPA and I graduated 1 of the top 10 in my class, not 10%, but one of 1 through 10 people that all had 4.0 GPA's. In college I maintained an A-B average and granted, I went to a rich girls-school, but I was on scholarship. I had to keep those grades and the classes I took weren't the easy fly through classes. I was doing extra work outside the classes and got a grant my first semester there as a freshman. I was developing my own major with the approval and help of 2 profs. I used to be able to concentrate like mad! I'm not allowed to drive and I'm not even supposed to be on my own because of all the meds I'm taking and the shakes I get where I lock up and can't move, and the way the Dysautonomia affects me. I can't concentrate long enough to finish cooking something sometimes. I forget cloths in the washer and dryer, luckly they can't burn down the house when I forget them. So things like cooking unless I'm sure I can finish it I don't do it unless my husband is home and awake watching me. Maybe if I get more energy and can find a way to get there I'll try to work, but right now its just out of the question. This probably will make you even more depressed when you finish it reading it, I know I'm definately not positive at the moment after writing and thinking about all of this. But if nothing else, remember that most of the ones that are able to work, probably aren't on here, or if they are they don't post a lot. UnciornIsis
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