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Everything posted by Brwneyedchica

  1. Dayna, I have not been on this forum in ages, but am glad I happened to log on tonight. I am so sorry that you are going through this right now. I understand that sometimes things don't work out between two people, but there is no reason for this. It doesn't matter if your house was not 100% clean everyday, or if someone does help you on your sick days. Normal people without POTS often let the housework go and have someone help with their kids when they get the flu or are sick in general. It really sickens me that you are going through this and I feel awful for your poor kids. I know I haven't been active in the forum in forever, but I think you will probably remember me and I just wanted to let you know that you can pm me anytime. Hang in there! ~Alicia
  2. Hey there everyone Since there is not a whole lot of research on POTS and pregnancy I decided to check in and let you know how my pregnancy went. I saw a high-risk specialist the whole time and stayed on Propranolol and Fludrocortisone. My pregnancy was relatively normal until I got kidney stones in December and then I had complications towards the end. I woke up the morning of March 1 and made breakfast like every other morning. As the day went on I started feeling more and more strange and I was shocked when I took my blood pressure and it was 190/135. I called my doctor and went straight to the hospital where I had planned to deliver Preston when it was time. They gave me several blood pressure medications and IV fluids which did nothing to help my pressure decrease. Monday morning it was decided I would be transferred to University Hospital in Cleveland, which is an enourmous hospital that is also connected to Rainbow's Babies and Childrens hospital where they have the best NICU in the area. I was transported by ambulance which was kinda fun and was told upon getting to University Hospital that my labor would be induced because I had severe preeclampsia and left untreated neither Preston nor myself would make it. On Monday afternoon at 1:30 p.m. they put a medicine called Cervadil behind my cervix to try and induce my labor. The actual act of inserting the medicine and subsequent cervix checks was more painful than anything I experienced in the past week. Twelve hours went by with no change so they took out Cervadil #1 and inserted #2 and eventually #3. I was told to expect an emergency c-section on Wednesday because my labor was not progressing at all. In the meantime I was put on complete bedrest and started on a magnesium sulfate IV, which made me totally groggy, weak and disoriented. They also gave me 2 separate steroid shots within 24 hours so that Preston's lungs would be developed. My vital signs were checked every hour and my blood was drawn every 6 hours to make sure things looked okay. I woke up Wednesday morning and was told that I was dilated 1 1/2 cm. The doctor came in and broke my water and literally within minutes I was feeling very painful contractions. The anesthesiologist came in and gave me an epidural and my husband and I both fell asleep for a little while. I woke up around 10:00 a.m. and felt an overwhelming urge to push. I kept yelling at the nurse to get a doctor in the room because I had to push. She grabbed a midwife who realized that Preston had dropped and his head was right there! The plan had been to take me into an OR room since there would be more room and they did not really know what to expect from Preston. They kept telling me not to push but it hurt so much that I tried my best not to but kinda did anyway. That was the point at which I think I almost ripped my poor hubby's arm off! I finally just could not keep from pushing anymore and they called a code! They dropped the end of my bed, a huge team of people ran into my room and I pushed my little man out within 5 minutes! I had already been warned that he would have a team of 5 people working on him and so I was not surprised. I've never in my life heard a more beautiful sound than the first cries of my baby boy!!! They put him on my chest and allowed me to hold him for a minute or two before he was taken to the NICU. I had to stay on complete bedrest for 24 hours after Preston was born and so I couldn't go see him in the NICU until Thursday evening. Fortunately, the steroid shots worked and Preston has been breathing room air since he was born! They had him on lipids through his IV at first, which they explained to me was basically fat. I started pumping breastmilk right away and my milk came in Friday morning. They started feeding him through a bottle and advancing the amount as he tolerated it. By Sunday morning he was throwing full out screaming fits because he was eating what they gave him and still wanting more! They called me this morning and told me that the milk I had dropped off yesterday (8 ounces) he had drank within 12 hours! He has been under lights because he is a little jaundiced but that is not uncommon even in fullterm babies. Preston was transferred from the NICU onto a stepdown unit on Sunday and he is doing great! My blood pressure is still pretty high, even though they have me on 3 types of heart medications. They say time will help bring it down. I've still been very tired and kinda feeling crappy so honestly I'm glad that they are taking care of my little man until I feel well enough to do so myself. We feel very blessed that things turned out so well
  3. Hello everyone I very rarely have the time to get online anymore. I got married in October and we are expecting our first child in April! Due to issues i've had with POTS my doctors encouraged me to have children sooner than later! It's a little boy and we are naming him Preston Connor! I was very very ill during the first trimester. I had severe nausea and vomiting they diagnosed as hyperemesis gravidarum. Thankfully that went away around week 12 and I've felt perfectly fine ever since! I had some weird headaches as my blood volume adjusted but I have not had one health complaint at all since I hit the second trimester mark. I am currently 19 weeks pregnant and things look great! My team of drs. including my Neurologist who I see for POTS, my normal OG/GYN and my high-risk OB/GYN all consulted and decided it was best to keep me on the very low doses that I take of Propranolol and Fludricortisone. Last week we had the anatomy scan and after much study via ultrasound of every organ and bone in his body...our little man is perfect!
  4. I'm getting married this Saturday! Thankfully I am not having any Pots related issues, but I am pregnant and am having lots of fun morning sickness which in reality is more like all day sickness. I'm getting really nervous that I will feel like crap and not make it through the day. After consulting with doctors we were told we would be lucky with all my medical issues to get pregnant so it's definitely a blessing! I'm just worried about getting through this one day of my life that I want to go so perfectly....
  5. Thank you Melissa! I will definitely post wedding pictures once I get them back! In regards to actually stopping the medicine...it's not really an option. I have been taking these medications for 10 years now and have been severely ill when the doctor has tried cutting them back even the tiniest amount. The cleft lip is just something that could happen that basically he had to mention. He didn't seem concerned about it at all and mentioned it more or less to just cover his own behind. I recall hearing from others on this board in years past who took Florinef while pregnant but of course I am not able to find those threads by searching. I just wanted to hear from others who have taken this medicine to kinda make me worry less!
  6. Sara, I was 15 when I first got sick with POTS so I've only ever known the dating world while having a chronic illness. I've been in several bad relationships with guys who were immature, or who couldn't deal with me being sick. I felt like I would never meet anyone who could deal with me not going out partying all the time or who could accept my limitations. Finally I gave up on dating and instead of sitting at home feeling sorry for myself I went out with my cousin and his friends one night. I met one of my cousin's friends who apparently had seen me several times over the years and commented on how pretty he thought I was to my cousin. We have been inseparable since that night. We are getting married in a week and recently found out that we are expecting our first little one! I know that it seems like you won't ever find the right guy but trust me when I say things happen when you least expect it
  7. So I am a little over 11 weeks pregnant now. I've had more and more POTS symptoms as i've gotten older. I'm getting married next Saturday and we had planned to start a family soon. I've had one problem after another and after being told that I may not be able to get pregnant after all, we decided that I should stop taking the pill and we would see what happened! Lo and behold we are expecting our first little one on April 16! Up until the past week or so I have had severe nausea and was actually diagnosed with hyperemesis gravidarum. I did nothing but lay on the couch and vomit day and night. My doctor put me on Reglan and a prenatal vitamin called Premesis with lots of Vitamin B6 and that helped. I have been taking Inderal and Florinef the whole time. The Neurologist I see for POTS told me prior to me getting pregnant that once I was pregnant he wanted me to stay on the meds during pregnancy. My OB/GYN referred me to a High-risk specialist who I saw today. He wants me to stay on my meds as well. He did tell me that Florinef MAY cause a cleft lip in a baby. I know the chances are slim to none but I want to hear from anyone that took this med during pregnancy with a successful outcome!
  8. My team of specialist consulted with one another and decided that if my fiance and I wanted children that now was the time. I found out that we are expecting last weekend! My main POTS symptom has always been nausea. I feel like I've gotten hit with a mack truck since I found out I was pregnant. I am super exhausted and very nauseated. Last night I spent the night in the emergency room because I couldn't stop vomiting hour after hour. The ER doc said welcome to morning sickness and that I could expect more of the same for at least the next 7 weeks. They pumped me full of IV fluids and then two doses of Zofran, one dose each of Reglan and Phenergan until my body wasn't completely wracked with vomiting and dry heaves. I have had POTS for almost 10 years now. Has anyone else had POTS then gotten pregnant and had my same experience with nausea? I guess I am looking for a glimmer of hope that this whole pregnancy won't be sooo bad! I am getting married in seven weeks and feel too sick to do anything
  9. I have been sick for 10 years this coming September. I was okay just taking a small dose of Inderal for several years. It seems as though the older I get, the more symptoms that I have. They added Florinef, Potassium supplements and salt tablets to my regimen over the past few years. I have been too sick to work and have had to quit the past few jobs that I've had in recent months and thus I have no access to health insurance. The State of Ohio will not provide me with any help whatsoever because they believe that I can work with no problem while passing out, vomiting and suffering from other IBS type symptoms. I am curious if there is anyone out there who functions without taking Medications? It's like my body is so accustomed to my medicines that it doesn't make a difference if I take them or not. I'm wondering if it's even worth begging and borrowing to pay for my medicines every month when they don't seem to make a difference in the way that I feel anyhow.
  10. I rarely get online anymore and it's been really hard for me to be my usual optimistic self lately. I have been so down with being sick and trying to juggle finances with no income that I forgot to mention my good news. I am engaged! We are getting married on October 4, 2008! My fiance graduates with a bachelors in graphic design this August. Hopefully he will land a great job and my insurance and financial worries will be over!!!
  11. I probably will look into finding another work from home transcription type job. The only downfall to that is that it is extremely hard to get hired in the first place especially with no experience most companies don't want to hire you to work from home. When they do, it's independent contractor status so I will still have no insurance. The pay is minimal as well. I guess worse case scenerio, I reapply for disability and if it gets denied again I get a lawyer and appeal within the allotted time frame. Thanks
  12. I need some help or advice!!! I worked for 3 years in a hospital as a Unit Secretary until October 2006 when I was missing so much work it was either quit or be fired. I took Medical Transcription classes and got a work from home job in January of this year. The company that hired me was disorganized. I was basically making 70 cents per hour, had no benefits and they had no work half of the time. They would give me three weeks of work at a time before I would ever get feedback on how I was doing. Then I had many different editors who gave conflicting feedback. The Chief Operating Officer, who had never taken a medical terminology course in her life, would call and scream at me because I made the same mistake consistently before getting any feedback. It's hard to not make a mistake if you have no idea that you are making one! I was hired as a unit secretary working parttime 40 hours per pay period this past month. I spent alot of money and time traveling back and forth going to interviews, shadowing for a day, getting my parking badges..ect. I went to orientation this past Monday and barely made it through the day. I have been sick as a dog ever since. The Unit Manager was horrible and pretty much told me that she resented that I wasted her time and that obviously if I couldn't make it through orientation that it was not the job for me. I asked if she could let me do orientation later in the day since my shift was 3p-11:30p and she refused! I feel like my body is shutting down one system at a time. I am nauseated and feel dizzy and clammy all the time, I get horrible cramps because my waste just sits in my intestines for days and then suddenly starts moving again. I filed for disability in October 2006 and was denied. I can't get medical insurance of any kind because the state of Ohio says that I can work. What can I do? I desperately need some sort of income. I can't stand for long periods of time. I need a parttime job with hours that are later in the day. I don't think I could make it any longer than 4 hours at a time. I also need some sort of health insurance. I haven't been able to see my POTS specialist in 6 months because I am still paying off my last appointment and I just can't afford it! I am totally open to suggestions. This lifestyle is not working for me anymore. I just can't keep trying to work and having my body scream NOOOO! I think I cried for 3 hours the day I had to quit my most recent job. I thought it was the answer to my prayers.
  13. I live in Ohio. I was told by State Farm that I could get coverage at a higher rate, but it would not cover anything in any way related to POTS. I NEVER go to the doctor unless it is somehow POTS related. I applied for Medicaid, social security and disability in October of 2006. They denied me because they said that POTS is not a debilitating illness and that I can just go get a job and get benefits. HA! Tell that to the hospital that I was formerly employed at whom threatened to fire me all the time because I was so sick so often. Anyway, I am working from home doing medical transcription and so far so good. I will pursue disability in the future as a last resort. I just want some health insurance! I had COBRA for awhile after I stopped working, but it was $500 a month, and I did not have anyone to help me pay for it so it lapsed.
  14. I have not been online in ages because i've been so exhausted from finishing up a Medical Transcription class I have been working on forever, and actually starting to work. I quit my job at a local hospital as a unit secretary in October of 2006 because it was so stressful, I was sick more then I was well. I tried through State Farm, my automobile insurance provider, to get medical insurance and was denied because they said POTS is a pre-existing medical condition. I tried through another online provider and got the same response. I have been without insurance since that time and received a phone call from an insurance underwriter one day stating that they can cover me, no problem and she set up an appointment with me. She never showed up and I never heard from her again! I had talked to so many people about insurance, that I couldn't be sure who she was to call her back. I REALLY need insurance and was curious if anyone with POTS was insured directly through an insurance company. Without experience, the only job I could get was as an independant contractor and so I have no benefits. Any information anyone can offer would be appreciated!
  15. I went to school to be a nurse but hit a "potshole" and realized that was not realistic. I worked as a Unit Secretary in a hospital for a few years until it became so stressful that I was sick more than I was well. I have been unemployed for a year now and I am just a few weeks away from being a Medical Transcriptionist! I am going to work from home with the option of wearing pjs if I feel icky
  16. I just received paperwork in the mail stating that POTS is not severe enough that I can not work. Maybe they should go tell that to my former employer who used to constantly threaten to fire me because I was so sick and missed so much work. I kind of expected this, but I still feel like I just want to cry. I don't know what to do now.... I had an appointment at family planning today...this was 15 minutes from my house, so it shouldn't have been a big deal.I woke up today, showered and ate. I dried my hair and then started on my way to a family planning appt. Halfway there my stomach got really upset, so I had to stop and run in the mall (i'm not kidding, I ran) and use the restroom. So I felt better and then went into family planning where I had to fill out paperwork and wait forever. I sat there and looked at my flashcards so that wasn't too bad. Then the nurse called me back into the exam room and asked me a million questions. She finally left and told me to get undressed and wait for the dr to come do my pap. So I sat on the exam table forever. It must have been almost an hour. I started feeling really lightheaded and hot. I was sweating like crazy so I took off my sweatshirt. I was sweating so much the paper on the exam table that I Was sitting on became wet. I was shaky and sweaty and I felt like I was going to either throw up or that my upset stomach was going to make me run across the office naked to the bathroom. I waited and waited because I had no bc pills left, and that is the one thing that makes me feel worse, is having a heavy unpredictable aunt flo with lots of cramps... So finally the woman came in and did the pap and I got my pills and left. I had to walk next door and get a pop and sit in my car with the windows down so the 40 degree air could freeze me. This is what a day in my life is like....but i'm supposed to be able to go work for hours at a time?
  17. Thanks guys, for all of your kind words. I guess I know that i'm going to have to decline her invitation. It's just too much for me physically and financially. This friend has been there for me over the years and has listened to me complain about being sick and upset that i was sick and missing work and school, countless number of times. I'm not sure what the deal is with her. I know that she does want me to be there, and I wish I could go. The last email I sent was long and detailed and really explained my point of view and gave her a pretty good idea of what I go through day to day. I think that she will get over this eventually, and if she doesn't i'll be left wondering what kind of friend she was in the first place...
  18. I have a friend who i've known for 8 years. She moved from Ohio to Oregon several years ago and we've managed to stay very good friends through emails, phone calls, and miscellaneous cards and gifts through snail mail. She is getting married this June and asked me to be a bridesmaid. I have not been feeling well for awhile now. I have another friend getting married next month and I tried to go to her bachelorette party a few weeks ago and had to be picked up because I was ill. This was a party close to my house. I shudder to think what may happen on the two plane rides that it would take for me to get to Oregon. She also expects me to pay for my plane ticket, a bridesmaids dress, shoes, ect. I haven't worked since October, when I filed for Disability. I am begging and borrowing to pay for the few bills that I have and I just don't feel that I could in good conscience ask for any more money from my family. I also have no health insurance and am terrified of being stuck away from home and being ill.I tried calling my friend to talk about this and she won't return my calls. Finally I sent a long email and tried to explain to her, just how sick that i've been and to explain my point of view. The only reply i've gotten from her is an email stating that "I had better think long and hard before making a decision." I think I must have cried for 3 hours that night. Why is it so hard to make people understand what it's like? I try to be a positive person and to not complain about my illness, but when I don't then people assume that i'm fine and get offended in situations like this. It breaks my heart to not be able to go to her wedding, but I think that it's the best thing for my health.
  19. Jacquie, So sorry to hear you've got the nausea going on ;( That is what I always have a huge problem with. Sometimes Zofran helps me and sometimes I lay in my bed for days with either an air conditioner blowing on me or a fan. Being cold seems to help me when I feel sick to my stomach. Also i've noted that eating something salty seems to help once the worst of the nausea has passed.They told me that I had delayed gastric emptying, when I was younger. Then more recently, I had another Gastric emptying study which came back normal. Nobody seems to have any idea exactly why I get the nausea. I've noted that eating a large amount of food, and eating alot of sweet stuff makes it much worse. Besides that, there is no rhyme nor reason to it. Hang in there, I know it's the most terrible feeling ever. I hope that it soon passes
  20. I haven't been online in awhile and just wanted to check in. I quit my job in October and filed for social security/disabilty and as of lastweek, the social worker said that it was still pending. I know that it sometimes takes awhile, I guess I was just hoping that at least the Social Security part of it would get approved or that i'd hear something about it. At first, it seemed that my health was better after I stopped working, then it resumed it's roller coaster pattern. At least on the days I don't feel well, I stay in bed and don't have to drag myself to work. I've gained a little weight since the last time I was really sick ( a few months ago) and I guess I really can't complain much. I hope everyone else is hanging in there!
  21. I also live in Ohio and I'm actually in exactly the same place as you are right now, paying crazy premiums for COBRA and not sure how i'm going to pay it. I was looking online myself trying to see about some other kind of insurance. I'll be interested in what you find out. I'm afraid of getting some other kind of insurance and having them deny claims related to POTS and saying that it's a pre-existing medical condition. Good luck, if I find out anything more i'll let you know
  22. Yayyyyy!!!! Congratulations April...I'm really happy for you!!! That's like the best Christmas gift of all
  23. Congratulations!!! That is awesome! You are definently an inspiration to me, i'll think of all that you've been able to do when i'm working on my own online class and feeling crummy
  24. Congratulations Ling!!! I'm sorry to hear that you were so i'll but i'm really glad that you are finally feeling better It's wonderful news that your little one is healthy!
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