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Rachel

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Everything posted by Rachel

  1. It very likely could be the cleaning fumes and the bending over that caused your symptoms. Cleaning agents always cause a flare up for me, and many times bending over does too. If I clean (usually my husband has to) I try to sit and reach, rather than bend over. Also, I have found that all natural cleaners help a LOT. I use a multi purpose cleaner called "Bio-Kleen." It can be found near the health food section of a grocery store. It has never caused any problems for me as far as POTS flare ups go. The only problem is that it doesn't clean "on it's own" like many of the chemical cleaners do, so you have to scrub harder, which is exausting. But for just wiping stuff down it works great. Good luck! Rachel
  2. Thanks! I don't know if it is a boy or girl yet. I'll be having an ultrasound next week, so hopefully I can find out! Rachel
  3. Several months ago I asked about miscarriages, POTS, etc. and shared that I had had several miscarriages myself and had never been able to have a baby. Well, I finally have good news - I am pregnant and have actually made it to my 6th month! I am due in November and am so excited! The pregnancy has been going well. I feel better than I did before I got pregnant - even in the first trimester whem many women have morning sickness. So the pregnancy seems to be going well. Is there anything I need to be aware of that is POTS related during labor, delivery and postpartum recovery? I've tried many times to get into the old posts on this topic, but haven't been able to get them to open for me. I would just like to be as informed as possible and know what labor and delivery and recovery is like for other POTSies. Any information you can give is greatly appreciated. Thanks, Rachel
  4. Hi all, Though I haven't been able to make it on the internet much in the past few months I still check in here occasionally and see how everyone is doing. We finally have internet at my house so hopefully it will be easier for me to get on here regularly. I am actually outside right now (outside Alaska) with my husband to visit family. We will be flying back later on this week. Does anyone have tips for how to survive the flight? Flying back to Alaska means many hours in a plane. Surviving the flight here was a nightmare. I ended up laying on the floor at my husbands feet during the flight - very uncomfortable! And it didn't make the flight attendant too happy that I wasn't sitting in my seat with my seatbelt on. I had requested bulkhead several times, but was always denied. Even though I came in a wheelchiar I still look fairly "normal." How do you explain to a flight attendant that you really can't sit up for 6 hours straight?!!! I have compressing stockings and will be wearing them on the flight home. We're also going to keep talking to airline people and especially the flight attendants until one listens to us and will let me sit in bulkhead. Then I'll at least be able to stretch my legs out a bit and maybe even prop them up. Any more suggestions that may make the flight a bit easier for me? I appreciate your help! Rachel
  5. Dino, I'm sorry your dysautonomia and asthma are so bad. And I'm sorry you're having difficulty with your doctors. I hope that you will be able to speak to them soon and find out some answers. I have never tried Xolair. I was on asthma medications several years ago, but they never helped much, so I've gone off. I tried Proventil, Intal, and two other inhalers that I can't remember right now. I never noticed them making my dysautonomia sypmtoms worse. But they didn't prevent my asthma either. Another thing I tried for a time was Lobelia, an herb that was recommended to my by my swim coach who also had asthma. It came in liquid form and tasted terrible, but if a few drops are put into a glass of orange juice you don't notice it. Perhaps an herb would be less likely to interfere with your dysautonomia. Good luck, Rachel
  6. Hi all, I haven't posted in a while because it has just been too hard. But I'm back (at least for today). It's been good to catch up with the news. I've missed a lot! Anyway, my question is about finding an attorney. I thought I had found one that I was willing to go with. But I'm not so sure anymore. I haven't been impressed with their competence this week as I have been trying to communicate with them. So I'm going to see if I can find someone else. Has anyone worked with one of the law groups that practices in all 50 states that they would suggest? Or do you know of anything in particular that I should be looking for in an attorney? I'd appreciate any input you can give. I do have some good news. I finally found a doctor who works with POTS in Alaska and is willing to take me as a patient! So I have an appointment with this neurologist next week. I'm hoping she'll be able to give some good answers and direction. Rachel
  7. I have a ray of hope. I tiny ray of hope, but a ray nonetheless. When I was at the doctor today my doctor was surprised to hear that I had gotten my disability claim denial because she had never received anything from social security. It turns out that someone just copied my records and sent them in, but never told the doctor that the SSA was also wanting a letter from her. So I called my caseworker at the local SSA office. She said that if I send in the doctors letter with my paperwork for an appeal that my case might be reconsidered and not have to go to the judge. I'm not getting my hopes too high because it isn't too likely, but I'm hoping a little bit! So my question is, does anyone know exactly (or kind of exactly!) what they are wanting in a letter from my doctor? Miriam, you mentioned a week or so ago that you had a video for doctors that gives advice on how to get the ssdi paperwork done and approved. Did you have a chance to watch that? Anything I should pass on to my doctor? I appreicaite your help so much. Rachel
  8. Hi. I'm back from my doctors appointment. I have tried salt tablets in the past, but they never helped. But maybe they were keeping me from getting worse. So my doctor and I decided to give them another try. We're also changing my medication again to see if that helps at all. And, GOOD NEWS! I have finally found a cardiologist in the state who knows about POTS! My doctor here is going to have my stack of records from the last 10 years copied and sent. Hopefully I'll be able to get in for an appointment soon. Thank you all for your advice. It is helpful to learn how others deal with the weakness and stumbling. Rachel
  9. I was just wondering - how much weakness is "normal" for POTS? Lately, even though I rest often, my weakness has gotten quite extreme, more than it has ever been in 10 years. I stumble a few times every day just walking in our tiny house because I don't have the strength to take even a few steps easily. My legs start to give out, but so far I have been able to catch myself in time or fall into a chair. Also, I've been losing my balance when I am standing still. I rarely stand still for more than a few seconds because I'll get faint. But I do stand still briefly sometimes. Just last night I bent over and was drying my hair. Next thing I knew I was falling backwards. Thankfully my husband was behind me to catch me. It happened again this morning as I was brushing my teeth. Usually I sit down to do this, but for some reason I stayed standing. Within 5 seconds my body just started leaning backwards without me even realizing it at first. Does this kind of stumbling or loss of balance happen to any of you? I'm going to the doctor tomorrow, so I'll talk to her about it. But I'd also like to hear what some "POTSies" have to say. Rachel
  10. Thank you so much, Sophia. This has answered many of my questions and has helped me get started on my SSDI appeal. Your information came at the perfect time! Rachel
  11. Hi! So glad to hear that you made it back, even though POTS is still a struggle. Hope you enjoy the new house you are living at and that it's a good situation for you. Hang in there and keep smiling! Rachel
  12. Hi all, Thanks for the advice. I still need more... I am in the process of appealing the decision made on my ssdi. So I'm going to have to start looking for an attorney. Have any of you used attorneys through the free legal services? Is it better to get an attorney that you pay? I'm just afraid that I'm not going to be able to get one that will work for a percentage of my back pay since it will be so little. I'm only 24 and have never been able to work full time, so a portion of my back pay won't be all that much. So if the free attorneys do a good job, that would be an easier route to go. Let me know your opinion. Also, how much current information am I going to need to be approved? I've mentioned before that I don't have a POTS specialist. And all of my tests are old. I tried numerous medications and treatments 8 years ago, but none of them worked. So I don't really have much recent documentation except that I'm saying my POTS is getting worse. My doctor was supposed to call me before she filled out the form for ssdi. But she didn't, so I think that at least 3/4 of my symptoms never even made it to the form. That made me really mad. Because my denial was based on her report. So I'm not sure how the appeal will go when my doctors office didn't even give a complete report to begin with. Makes me look like I'm not really telling the truth. Sorry, I'm venting. I'll stop! I'm grateful for any more info you can give. This ssdi stuff is all new to me and I don't know what to do! Rachel
  13. Hi Persephone, It is Thursday, so I was thinking about you. I hope you are doing well enough to travel back to the university today. Hang in there and let us know how you're doing. Rachel
  14. Steph, I have a ringing sound too, but that is a different sound. I have wondered if the sound is my heartbeat. But there are times that my heart is pounding really hard, but I don't hear it in my head. And then there are times that my heart isn't pounding all that hard, but I hear a pounding noise in my head. I never mentioned anything about it to my doctor because it wasn't a very bothersome symptom, so I never even thought about it when I had an appointment with her. So what did your doctor say about that symptom? I'm just curious. Rachel
  15. Steven, I get really bad headaches sometimes like you described. I get them if I stand up too quickly and I also get them when I wake up from passing out. Standing up slowly helps - either the headache won't come, or it won't be as severe. Also, when it does come, if I tilt my head back as far as I can the headache goes away fairly quickly. I don't know if that works for anyone else, but it might be worth a try. Rachel
  16. What kind of documentation do I need to be collecting for the whole SSDI process? Social Security doesn't really tell you what they want. They say that if they need more information or tests, they'll just ask. Well, they didn't. Would it be helpful to keep a journal of my daily activities and how I feel each day? Do I need to keep having tests to prove that I'm not getting better? I figured I'd better ask all of you who have been through this. You'll probably give me a better answer than I'll hear from the Social Security Department. Thanks, Rachel
  17. Tearose, Many have already replied, but I wanted to let you know that I, too, was so sad to hear that you were denied. My heart just ached when I read your post. I must agree with the others - KEEP FIGHTING! Don't give up. Best wishes, Rachel
  18. Yeah, it does kind of come in waves. Not long waves, but waves nonetheless. Rachel
  19. Boy, do I feel better after reading your post!!! The same thing happens to me! I've never been sure what is going on or why it happens, but it does! I've only had it happen as I'm waking up. It happened for the first time about 8 years ago when I was in highschool. I heard this loud noise and thought that my mom had a load of laundry in the washer (which was just outside of my bedroom) and that it was off balance and rocking around like crazy. It was so noisy it woke me up. I later found out that the house was very quiet at that time. Another time I was home alone and heard this loud noise as I was waking up. I thought someone was pounding on our door, so I went to answer it, only to discover that no one was there. So, don't worry, you're not nuts! Or, if you are I'm right there with you! Rachel
  20. Dear Anna, I understand what it is like to have all of those symptoms, but not be able to get them to go away. My POTS goes up and down too. It used to be up and down from good to okay. But now it is just up and down from almost okay to bad to very bad. Like you, I never responded well to medication. I was actually off all meds for I think 7 years because there weren't any left for me to even try. I'm sorry that all the things you have tried aren't working. It is that way with me too. Sometimes diet works. Sometimes it doesn't. Some days there just really isn't anything you can do to feel any better. It may get better in time. Keep hoping. I don't have many answers to your questions. I'm not a teacher in a classroom, though I have worked with children most of my life. I have taught Sunday School, Childrens Church, and Bible Clubs. Last year I was still able to keep up with doing a Bible Club once a week and Children's Church once or twice a month. But I can't even do those anymore. I don't have the energy to keep up with the children. And because I am so tired I just can't teach with enthusiasm and passion anymore. I'm sorry that there aren't any easy answers or simple ways to cope. It's hard. It's a day to day struggle. Keep pressing on, but don't push too hard. Learn to listen to your body. If it is telling you that you need to slow down or get extra rest, it is best to listen to it. Do you have any close friends or family who would be willing and able to help you out? One of the biggest things that has helped me has been the ladies from my church who come over once in a while to clean my house, bring a meal, or visit with me when I'm unable to go out. Keep us posted on how you're doing. Hang in there, Rachel
  21. Hello Dizzy, I'm sorry I don't have any recovery stories for you. But don't give up hope. There will be better days and worse days and days that we just have to find pleasure in the small things in life. About the pain - have you tried an air bed? I don't have fibro, but I good friend of mine does. The air bed is what helps her the most with her pain. I slept on it one night and it was NICE! You don't feel the pressure on your body like you do on a regular mattress. Sending a smile, Rachel
  22. It's me again, and I have a couple more questions about SSDI. If I keep applying and am approved, say, the 4th time, does the back pay go all the way back to the very first time I applied? Also, is it hard to get an attorney? If they only work for a cut of my back pay then it won't be very much at this point. But if the back pay does indeed go back to the very first time you apply then maybe an attorney would be willing to take my case a little ways down the road. Rachel
  23. Just wanted to say thank you to everyone who replied. I appreciate you sharing your stories and your thoughts on the subject. Though POTS doesn't seem to cause miscarriages, I am still holding to my theory that the two can be related in some cases. So until I can find proof otherwise, I'm going to keep doing my research. You should see my stack of papers and information at home! Thanks again, Rachel
  24. Amy, I'm glad you found a specialist who really wants to work with you and figure things out. That is great! It has been several years since I had an echocardiogram. I don't remember at all what my pulmonary pressure was. And I don't think I even have those records at home to check. However, I do have problems with being short of breath. And, actually, it is two different types of short of breath. Sometimes my airway actually starts to close off. I recently found that this is probably due to my M2 receptors not functioning properly. But asthma medications do not work for me. There are other times that I get short of breath for no apparent reason. I breathe normally and my lungs fill up with air, but I feel like I am holding my breath. The doctors never did figure out what caused this. What exactly happens to you when you get short of breath? Do the doctors have any idea what causes it? Rachel
  25. Thank you for all of your answers. Well, I guess all of my nausea IS related to POTS. I've always wondered why I sometimes throw up so much in the mornings. There were times when it would happen 10 days out of the month. But now it is usually just once or twice a year. Steph, I'm the same as you - when I throw up it's usually just acid from my stomach. I have found that drinking a few sips of Coke helps. It doesn't make me stop throwing up, but it dilutes the acid a bit and helps to take the burn away. Wow, I didn't realize that it was so very difficult to get SSDI. You'd think that if someone can't stand for more than 2 minutes, can't prepare their own meals, can't work, etc. that it would be easy to qualify. Guess not! Well, I'll keep trying. Thanks for the encouragement. Rachel
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