nadine

Just a hello,thinking of you and hope you are soon able to go home

Just curious on what basis did they think you were not entitled?

Jan - just reading your update and will continue to pray for you and your family. Wishing you much strength during this time-----take care and rest when you can.

Dionna- I am not sure what to say, but this is clearly seems like a very non-supportive, stressful environment for you. Do you have any supportive friends or other family you can stay with? If you are on disability- how about some social service involvement from a local agency? Perhaps a local United Way could direct you to an agency that could provide in home services, transportation, maybe some alternate housing that you may possibly be eligible for where you wouldn't live alone. There are often many programs that one doesn't know about. Try local Adult Services through Divison of Human Services for possible services? This just sounds very unhealthy. Sorry you are going through this.

Nina - I can't imagine what that time was like for you and the thousands of others who had their lives changed forever that day. The pain is raw for all of us, just remembering- it doesn't matter how much time has passed. The pain is deeper for those touched personally. All the images are all too real. I must say since that time, I make a far greater effort to stay in contact with family and friends more frequently and let them know that I am thinking of them, love them and care about them. I have noticed many others who also express their feelings far more openly as well, it may have always been felt but not so openly expressed. SO here is hugs to all of you for all your support you have given just by being here for so many!!!

prayers and hoping to hear positive report in next day-hopefully things will resolve soon.

Morgan- Just wanted to add more well wishes!!!! Hoping better days are coming for you-----

I don't have any great ideas- just wanted to say that I think you have good reason to feel exhausted. I also take Klonopin and especially need it for sleep, so if I didn't have that- I would feel even worse. You may be right in not stopping it, maybe just adjusting when you take it. I assume you may already take vitamins? I know when I miss mine it makes a huge difference and when I am not eating well, that makes me feel worse also. take care and good luck with your move. Perhaps once the move is done, that will be a little less stress as well.

just wanted to say Zofran was the most helpful for me and I ditto all the comments about appeal to insurance company if your physician can document need for this vs. other meds, my insurance company has done this for 2 dift. meds.

Nina- just wanted to say I hope you are soon having better days-- could tell you still were not doing well. Many are just not doing well right now. Please take time to heal those ears before your flight. Are the ear tubes scheduled soon? Well, here's looking forward to your next school vacation day-----

Willows- just wanted to say I was thinking of you and glad to see by your last post that you have a plan and a bit of your humor back as well---

Morgan - I agree that many are going through very difficult times right now, including yourself. It is so thoughtful of you to give the rest of us updates, when it is a challenge for you to do this. My well wishes to sonotech and her entire family. The illness and treatments are difficult enough, but I am sure it is most difficult, as a mother who has been in that situation, not seeing your children-that can be the hardest. I am hoping that all our thoughts and prayers will reach out to you and give you added strength.

wow- i just did a search on the forum for this drug before reading the new posts and here someone has asked the same question--- thanks I just came home from physiatrist, who also prescribed Lyrica today for pain and I was also wondering peoples experiences. I am very concerned about the dizziness as I have this as a severe symptom already. My other concern was taking it with the other meds I am on. There are always horrible side affects listed, arrythmia, dizziness, etc. I am rather scared to try it. I am currently on atenolol and klonopin as well as protonix. Worry about added combo. What is the dose that most are taking. She suggested I start at 50mg 1xday due to past hx with meds and then keep increasing--

Are there as many people out there who are having a weight gain? I first lost weight and then gained it all back plus about 20 pounds more!! I know the activity level is poor, but somedays I hardly eat-- I would be happy to share the wt. with those who need it-- if we could only do that---

just thinking of you and hoping this will mean so positive changes for you.

I just want to say that I understand exactly how you feel. This just started happening to me this past month and I am freaked out as well. It was very sudden. It is thinning all over and I feel like it is half as thick as it was. I always had fine hair, but lots of it. I had my blood levels checked, thyroid, everything fine, but something is not right. I find myself constantly feeling it and checking it in mirror, asking family. Of course they all tell me they don't notice anything dift. but I sure do. I am far from being one who is overly concerned about their looks, but it does concern me- more as a possible sign of added health problems! Hairstylist cut it shorter to make it look fuller, but she hadn't seen me in 4 months so she didn't notice drastic difference. I will see her in a little over a month if physically able , that is always the challenge- anyway to check in again.

awesome photos-- so nice to see when people are out and about enjoying such beautiful places!!

Gillian you have described my most disabling symptoms exactly the way I have tried to tell my physicians and physical therapists many many times. I feel the heavy heavy legs, back pain, muscle fatigue, on and on. This as well as the severe balance problems have caused my life to change overnight, starting over a year ago. I am hoping and praying that someday it will go just as it came. I have hx of CFS as well and this may be playing a factor, but now with think it seems like FM has developed. Don't know but the symptoms are just as you described as well as many others in addition.

Jacquie- I was just wondering what you were taking for stomach pain, nausea? I know you were having a problem getting medication for this or some discussion about this in former post. Hope you have better days soon.

Nina- i hope you soon start feeling better and the antibiotics help. It has been several weeks for you. Is this a private practice? This care or lack of is totally inappropriate and the sad thing is that your transfer of care won't change their practices. I did like the suggestion of getting the insurance company involved- my insurance company also has triage nurses, although i haven't used them. They certainlly promote them and it would be interesting to see if an insurance company who reimburses these physicians called, what the reaction would be. Would the ER be an option for you if necessary? I know we all hate those trips. Don't regret the pity party -- I am having one myself these last couple days. I got very tearful last night, not sure why just from pure exhaustion and frustration with being so disabled in general. You know a person can only take so much and when you are trying to fight illness and then have to deal with added stressors - you just got to let it out once in awhile!!!

Your home is lovely. I believe you will make many memories here and your daughter seems quite happy already.

I have been on it for about 3 years and I think it was helping some at first, when I was functioning and working. I would have the presyncope episodes maybe every 2-3 months then. Now I have other medical complications that are not clear and very disabling, so it is now hard to say if it is helping. We have tapered the dose only because my pulse rate was going a bit too low, espec. with decreased activity level. I have also wondered how many have found this med helpful vs. others. For me I have clear NCS, and the POTS is still in question.

I hope he has a fantastic school year. Wonderful that he is doing so well and playing hockey. That is a very physically demanding sport-- and with his diagnosis. Big hockey fans in our family. Does he play on college level?

Sorry to hear about sonotech- I was wondering how she was doing, hadn't seen posts lately, but thought I may have missed them. Well wishes and prayers to her and her family.

I have to add that my sister also used the can trick, seems to work- however, the noise might get to you as well-lol