nadine

Thanks everyone

you do have a lot going on - what exactly do you do for work?

Please keep us posted- it does sound like you need to have this done, all the blood loss sure must make symptoms worse. Good luck to you=======

Just wanted to say i will keep Ernie in my thoughts and I agree that the PT department should be able to work with her, even if she is unable to get up. Sure hope they get some help for you soon!!!!

welcome and I hope that the job continues to go well for you!! Good luck with the Florinef- hope it helps.

Just wanted to share that I had my disability hearing today and it went very well. So after an initial denial and months and months of added stress, it is over and only lasted about 15 mins.! I am exhausted from just the ride, but wanted to share some good news!!! I did have an attorney for this, he really didn't have to say anything other than an opening statement, all records were already reviewed. I was asked just a couple questions. Just so relieved. Can put more focus on healing now!!!

Morgan- I love how you describe the feeling of walking through 4 feet of jello and the 1000 pound weight of arms and legs--- It takes enormous amounts of energy to move this body -other than the rag doll feeling,it also feels like cement is being poured in me,especially when I am up and trying to move. The longer I am up, the worse it gets

I also have great difficulty with this. There are times when I tell them that i feel like someone with heart failure, extremely short of breath just doing nothing, or talking, entire body feels like it has no energy, like it is sucked right out of you. To do anything, even laying- just often feel like I don't have enough oxygen or something. Very hard to describe, not an issue of being as much sleepy tired as complete body fatigue. When I had the CFIDS onset - I always said I felt like a rag doll. Now, I feel that doesn't even adeqauately describe it. There are multiple other symptoms that comes with the body fatigue for me as well.

So very happy for you and your family to have that time together. You should put up some pics on the website !!

Happy Birthday to you and all the members with birthdays in March!!! Have a wonderful day.

Congrats!!! They clearly were very impressed by your interview and qualifications!

I will be thinking of you and praying for you as you meet with your physicians and decide on best possible options. Sorry for all you must be going through right now.

hope you soon have some relief and better days!!!

So nice to hear good news. Very happy for you that the pregnancy has gone so well. Rest when you can--------

Tearose, I think you may be on to something---- you should make this suggestion to them!!! Seriously. You would be a wonderful person for such an agency that clearly needs to reconsider their standards to meet their mission or maybe a state agency that offers similar services.

WOW- very concerning, not sure this is an agency I would want to represent me. Sad to think their job is assisting the disabled and making a comment like that.

I do understand your emotions. My daughter was diagnosed with CFIDS just as she was going into high school and she has struggled for the last 8 yrs with this- in a very big way. She was 2 when I first became ill with CFIDS and I couldn't care for her for months on my own. Then again as she was going into first grade I spent several weeks in two dift hospitals, in two dift. states. It was more devastating trying to deal with the emotions of it all as it was such critical times in her life- so much is happening at any age, but ages 2 and 6 were huge. Then things were better for several yrs. when my illness was under contol and she was a delightful, active, social, athletic kid and then her whole life changed after an illness. Around age 14 she was finally diagnosed. I have asked so many times, why, why, why her after all she had to suffer with my illness. Then at some point you just go into day to day coping. High school should have been the best time of her life, it was not. It was a constant battle between her health and wanting to stay in sports, school and have a social life. She was hardly in school her senior yr, but managed to graduate with more than enough credits and did go off to college for a year, but ended up coming home as she was too ill. She is still going to college, but goes nights and works very part time, lives at home- allowing for lots and lots of rest. We worry what her future will hold as she has now seen me so disabled the past two yrs. with NCS and health probs. but I have to remember that we have seen many hard times and we will get through it with the help and support of each other and continued trials with medical treatment. There are no wonderful magic wands that I have wished for over and over, but you can advocate for her and you will be able to understand what she is going through. It is interesting that even though we can understand and relate, it is still a mother/daughter struggle at times - as they often think that you still can't understand their life, no matter what we have experienced- if you know what I mean.

It sounds like your move maybe a wonderful thing for everyone. I grew up in an very extended family household and so did my daughter- there are many positives for all. Gives a real sense of family. Privacy can sometimes be an issue ,but the benefits for us were well worth it. My daughter has wonderful memories of living with her grandparents, especially grandfather as he was in the same household for 16 yrs. "It takes a village to raise a child" -- I grew up in a village and a true believer of this. We are often missing that sense of family and community to help so many these days.

sorry Jacquie

sorry to read this post-

Glad things are going well for you- what a great photo. Nice to hear from you. Is your husband doing well also. I seem to remember that he wasn't feeling well this past summer or am I confused?

Just some thoughts and prayers for you and your family. These are very difficult times for sure. So sorry.

thinking of you-praying for you

Happy Bday!!! I agree with Katherine, you add a great deal to the forum. How interesting that you are born on Valentine's day, go into the cardiac field and have health issues which affect the heart. Well, we know that you have a very big heart and are here for many on the forum. Have a wonderful Valentine's/Birthday!!!!

Happy Snow Day from NH----- It is beautiful and refreshing----loving it! I wish I could be out playing in it and wouldn't mind shoveling , if I only could!!! For now I will enjoy the view and watching my bird feeders, which are quite busy.