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nadine

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Everything posted by nadine

  1. thinking of you and hoping you will be able to return home soon------
  2. thanks for sharing---- I am months behind on reading posts and learning about all the new members, but it is so good to read an encouraging post from a long time member. Sounds like your bday was wondeful.
  3. Amy-- I am sorry to hear that things have been so difficult for you. I haven't been on much lately either and very out of touch with updates on everyone and all the new members. I know you have been battling for a long time and it is hard to stay strong. Let the better days lift you and hang in there. I know all our situations are dift.. but I can relate to the inablility to walk more than a few feet or stand for any time and needing to use a wheelchair. I will be hoping and praying that your health will improve and you can enjoy some of the summer with family. take care
  4. wonderful--- hope he enjoys his trip or trips!
  5. Heat intolerance is a huge symptom for me and most I see on here. I can't tolerate it over low 60's, summer time over 70- I have A/C on to 60's. This is when I am most comfortable. My family is constantly freezing due to this. I also have very poor sleep due to waking up from being too hot, taking all the covers off, sometimes opening windows in winter. It is awful for me. I can't stand in front of anything hot on stove, no steamy showers, have fan and window open for shower. Eating makes me very overheated after for about an hour. I think it is right up there on the top of my list as far as making me miserable. Way dift. then my phase of hot flashes- just not the same at all. Sitting in any direct sun is awful, also can't tolerate sunlight in vehicle. If anyone transports me and leaves me in the car to do errand- I always have them leave keys to cool down the car if needed. thanks for sharing your history- I think your story could be very important for others to hear who use recreational drugs- even if you never find someone who had similar experience. One never knows what may set something off in their system, in my opinion. I became very ill after heavy doses of medications for infection.
  6. thinking of you and your family- wondering how the surgery went?
  7. I also use zofran and did get preauthorization for this and had no problem getting approval. This is done yearly, but also just started getting the generic in last order. I haven't tried it yet, but assume it will be pretty much the same. I have pretty good insurance so it is of almost no cost to me-- but it cost thousands of dollars, very expensive medication. Melissa- I found it interesting that you stated it doesn't do much for the "low- level nausea"- I find the same and I also use it for more intense flare ups or riding distances as I have a lot of motion sickness now. It does help. IV Zofran was a must for me on a regular schedule when i was hospitalized a couple dift. times. It is something I never leave home without for sure. Good luck Jacquie
  8. wonderful --THANKS FOR SHARING! Did you find any specific medications or treatments that were helpful for your recovery?
  9. tried it and could not tolerate it at all- felt extremely anxious on it.
  10. I did try COQ10 at 50mg I believe it was once a day- and I was very excited at the possibility of this helping in some way, whatever it may be as I had read that it was being used for so many things. Well, I tried it for about a week or so and was feeling worse every time I took it. I was more lightheaded and could not stand to lift my arms at all above shoulders- was in bed a lot more on it. My HR is very low already with the atenolol- so not sure what the deal was. Again---everyone is dift. My physician was deft. for the attempt to try it-- just didn't work for me.
  11. No real great words of wisdom, just wanted to say thinking of you. I am also having a really bad week. I know what the days are like when you feel you really won't make it through another day- physically and mentally. Is it worth being seen by your regular MD just to see if something else is going on? I also continue to seek diagnosis and treatment for what is going on in this crazy mess of a body and frustrated beyond belief by symptoms, lack of response to treatments tried and the frustration with physicians. All of this often keeps me from wanting to call my physician to tell them something is worse or has changed- thinking it will all be attributed to the usual that is going on, but sometimes it may not be. I guess I look at as -is this something I have been through before or dift. for me. Hope you soon have some better days. Hang in there.
  12. This was a recommended med by one cardiologist for me, but my family MD and another cardiologist--said no- thought it was too risky and not comfortable with it--unless last resort. Family MD wanted no part of it. I really think it varies greatly with each individual. For me, I trust my family MD- most of the time, as he knows my medical hx best.
  13. Right there with you- I haven't been on as much in the past few months, one of my coping mechanisms I guess- avoidance. I find such support and information here and love reading the posts, but sometimes I think I need the break from reminders of what life is right now and may be indefinitely. I have also tried numerous meds-- all making me worse, as well as dift. therapies and treatments. My 5 yrs is coming up as far as being diagnosed with NCS and 20 yrs ago diagnosed with CFS( hard to believe), now 3 yrs of being completely disabled by health problems. I must say most days I try not to focus my thoughts on this, just try to get through the days-- but sometimes the thoughts do take over. I am glad that we have people here who understand-- In reference to age- I was diagnosed with CFS in my 20's, disabled by it then and in my 30's and now the battle is completely dift. in my late 40's , with additional health problems-much worse. when you are young- you may think-my life is just beginning and now it has been taken away, school, career, friendships, dating, marriage,family, social life, etc.- you wonder if it will ever be possible - to now I am in my late 40's or older, can't work in a career I loved for over 20 yrs, can't help support my family, can't physically care for family, children and aging parents. Feel like you lost your role and how you identified yourself for many years. I felt very cheated at all ages - and mostly over the same things, but in a dift perspective. -- I keep trying to find ways to hang on, keep hope and keep my soul strong and reaching out when I need to-- We need to express what we feel, good and bad ----
  14. thanks for sharing - so cute- and clearly being well cared for.
  15. What a wonderful Christmas present to hear that he would be home soon! My brother in law will be coming to visit us soon, as he will be leaving for his second tour at age 57! He is dedicated, as they all are-- God bless them all.
  16. I know this med is in past topics-- again everyone so dift. I passed out cold on this medication the first time I took it, but I know others have found it very helpful.
  17. Morgan- I do understand what you are saying. -- I had my license renewed last year. My husband parked in handicapped parking and I held on to him, instead of using my cane and prayed I could stand long enough to read the eye chart without losing my balance. I was so afraid they wouldn't renew it if they saw my need for assistance to just get in there and stand. I leaned on a table while waiting, pretty much sitting on it. Luckily it was renewed - good until 2011, but I also haven't driven for 2 1/2 yrs, other than the length of my long driveway . I also would not risk it, but like you want to keep it with hope that it will get better and I could keep in practice by driving with someone. Not being able to drive has been one of the most difficult things for me to cope with. Drives me crazy, makes me angry -- to depend on others for every little thing, to have to wait for someone to get things for me or take me to apts., to do all my shopping and errands, etc. I go through this range of emotions constantly. SO vent.
  18. Thankful for each new day- no matter how bad it may be. For family and friends and their never ending love and support Thankful for my freedom- and those who have sacrificed to protect it Thankful for having enough to meet basic needs of our family having access to health care- no matter how frustrating it can be. I have coverage and choices and many don't have this luxury. For my faith and spirit that keeps me going and fighting. SO very thankful for this forum!!! I haven't been on as much lately-- but everyone is here when you need them to lift you, inform you, encourage you, be your friend, cheerleader, just to support you and most importantly understand!!!! Thanks!!
  19. We have them in two of our cars, actually one is going in to get checked tomorrow as it isn't working. I would never be without them again. I am not able to drive right now, but still very helpful for the reasons mentioned- can warm up or cool down car ahead of time. I have one and my daughter has one. The price usually depends on the make of the car- mine was not bad, under $200 but hers was around $300 due to the wiring for her car. That seems expensive, but we love them. Great lifetime warranty and I didn't know this but we could have taken it out of our car we sold and put it in a new one and they would have covered it! We purchased one at Best Buy and one at Circuit City-- service and warranty was fantastic at both. They have not charged us at all when bringing them back for service problems. Check around as there are great deals at the holidays-- they were Christmas presents for us and we were very happy!!! Something we could really use for yrs.
  20. Thanks for sharing the pics-- so cute. They look so friendly, yet I have such horrible memories of being attacked by goats as a child at the petting zoo. They were bucking and aggressive, nailed me right to the ground. I am sure it had something to do with the constant feeding by patrons that made them that way. Just never trusted them since.
  21. Our family has been covered by federal BCBS for over 20 years and we have been pretty happy with it. I am not sure how your current insurance compares. Most govt employees have several plans to pick from. I don't know what your husbands particular benefits package will be. We pay for family plan and there are two options - Standard and Basic. We have the Standard plan. The problem for us is that our daughter just turned 22- still in college, but insurance ends at 22, regardless of student status. There were pros and cons to this, meaning if your child wasn't a student -they still could be covered until this age. NOW we are paying hundreds of dollars a month to keep her coverage while she finishes school. She has option of 36 months of continued coverage under the plan which provides the same coverage she has had
  22. Thinking of you Amy and praying you are soon able to return home. Hang in there -- I know how difficult it is to be away from family, hopefully you have a good support system to help and that the rehab is as close to home as possible.
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