nadine

I was just wondering if there was a more recent update? I haven't been able to follow all the posts, so I may have missed it.

Emily- thanks for all the updates you have given.

Just checking to see how you are doing - you may have a virus on top of your usual symptoms. I have several family members fighting gastro virus and they are in several states. Some required ER visits for IV. My daughter has been sick for several days with it. She could not keep even the Zofran down, think she is improving slightly now.

This bug seems to be very bad right now. You may want to be seen if not improved.

Hope you are better today.

Poohbear-

I love it!!! I am sure this will lift her spirits--- how talented you are.

Continued well wishes and prayers!!!!

Congrats!!!

I just called on my hearing to see if it has been scheduled, as I have been out a yr. and a half from work. I received my denial in April 06 then filed for hearing in June and just got date- apparently as of yesterday -for March. I only knew because I happened to call. I guess they will send paperwork soon regarding this.

I did not go with attorney as my physicians said to try hearing without it----- I hope this was not a mistake and that it goes well. I am so sick of dealing with insurance companies and disability- totally drains away from trying to get well!!!!!!

Sending prayers - some really difficult times for so many

---- hope they soon discover what is going on.

Take care

Well, I just responded to the other post and then saw this one- good news that they at least know what they need to fight. Hang in there Melissa-----

Thank you for your updates ---

I will continue to pray for her----

Melissa -

I haven't been on much lately- so sorry to hear you are back in the hospital. Hope you are soon back home.

MERRY CHRISTMAS, HAPPY HOLIDAYS, GOD BLESS---------

This forum has been filled with support and friendship for so many---- a true gift.

Melissa -

I had images of you as you described all you are going through. I remember begging in the hospital to take a shower, or to have someone help me sit in my bed to just wash out my hair somehow and shave my legs. I did have some wonderful assistants there who completely understood. I was a bit shy with them helping at first, but that didn't last long. Then I was horrified the first time my daughter had to help me at home, like your mom. Just had a hard time with that one, she is around 20 and was so good about it- but that was hard to swallow.

Hope you are able to gain some strength to enjoy some of the holiday. Some nice new pjs and a holiday movie with family?

take care

I do get this a lot- rest, fluids and actually taking an extra dose or half dose of my klonopin helps with spasms.

Wishing you some good rest and hope you are able to gain a little each day. Sorry for all you are going through.

This Youtube is a whole new world to me. Amazing. Can't wait to share with my daughter who has lived a similar life due to CFIDS, I question if she also has POTS as well. She will relate well to this and is now making many adjustments to go to college part time.

Informative, serious and fun as well.

Thanks for the link

I have been feeling what you describe for the past year and a half. Still trying to figure it all out. Originally, diagnosed with vestibular disorder, but clearly not just that. It is all much worse when I increase activity- trying to do anything normal. Like walking more than a few feet, being up for length of time, trying to do household activities. I get pressure, fullness, pain in ears also when walking, standing for length of time and things like eating and feeling not digested can make it all much worse. It feels realted to circulation to me. I get real off balance and dizzy, sweaty. Pretty sick and tired of it.

I am very angry at myself for not remembering to click into this first before doing my holiday shopping. Most of my online shopping locations do contribute and I forget to do this!!! I can't seem to fix the igive.com icon so it pops up when i go to location that offers donation.

Anyway, just a reminder as a lot of little donations can add up. I will try to rember this-

What a very nice response---clearly has compassion, if not all the answers.

Too many thoughts on this one - but really it has all been said. This individual is not worth the time.

Considering the average women is a size 14 these days- I am sure that many of us can never imagine seeing those lovely single size numbers again!! Sorry, but the size 14 would be wonderful at this point for me. The weight gain is extremely depressing for me. I am not making light of your concern-but really I think your weight is just fine-

.

Thinking of you and your family-----prayers for all being sent

Thanks for sharing that beautiful slide show. You and your family did an amazing tribute to your husband. I laughed, I smiled, I cried. Everything about it was wonderful -

I am sure you will have many difficult times ahead, especially with the holidays- That slide show reminds us of the true gifts- and your husband and family were blessed with some wonderful times and memories.

Take care.

Hope the antibiotics and rest help--

Haven't been following the posts as much lately- how is the new kitty?? I believe i remember seeing some pics of new family member with rather large ears-lol

Oh- I just found the recent pics of him- what a riot- beautiful kitten!!

Many great ideas already given - many done in our family as well. Just wanted to add a few ideas that I loved. One was we have a family party where we need about 20 gifts, cheap- so one year an aunt printed off computer photos of great grandparents for the family and put them in very cheap christmas frame ornament- you could even get creative and make ornament frame. EVERYONE loved them and it hangs every year on our tree. For me they were my great grandparents, for some it was parents, grandparents and even great great grandparents, depends on the generation. We have a couple of these of loved ones no longer with us. This ia also great for the younger ones who may not have known the loved ones .

Also photo one sheet computer calanders were big gifts and cheap. Pick a fav photo and run them off your computer in calander style or order pretty cheap. Photos of family, old family homestead, vacation spot, memory- whatever

The other thought was a picture frame, maybe something funky for frame to put photo of all of you on your cruise in. You could put something about looking forward to a photo for lasting memories of your great time together- whatever.

Funny -dishtowels were a hit with the women in our family made by grandmother, the hand towels that can hang over the dishrack also-lol. My grandmother passed away many years ago and I still have towels and dish rags she made- I think of her every time I take them out.

ALso, family tree sheets done on computers were popular- they can be done as far back as you can remember and then have as topic of discussion for others to fill in.

One last one that was also a wonderful keepsake- a cousin scanned a bunch of old family photos and put them on CDS- loved it.

Happy Holidays!!

I just wanted to add that I love the letter idea that Nolie mentioned. I once gave this as a gift to my mother on mother's day - it was a letter of several pages and I can't tell you how moving it was for both of us on so many levels. It was the best gift for both of us.

lthomas521-

Thanks for the link to that article- very interesting and helpful with explainations. I will be printing this for my physician-Hoping he may read it at some point. I wish there were more Dr. Bells available to us. He has been researching this for so long. I have been seeing the same family MD for the 20 yrs I have had CFIDS and he still doesn't completely get it, although he tries to be supportive.

By the way, I loved your comments-

" I had genuine hypotension when I stood up, but I supposedly did not have orthostatic hypotension. And they think that they are smarter than I am, and thay maybe my problem is that I'm nuts?"

I still get the -"do you think it is psychological?" we are all familiar with this crap. I want to go crazy when ever that comes out of their mouth. Take my body for a week and you will know exactly what it is like!!

This even though they see and say how impressive TTT results were and how miserable one can feel from orthostatic intolerance,NCS,POTS!! Not to mention CFIDS.

Sorry got carried away.

Thanks for the updates-- I will try to get a card to mail out. Melissa- you are clearly a woman of amazing strength. I can't imagine getting through a fever that high - as high end for me is around 100- usually low. Let's not even talk about all the other procedures you have had. Hang on and know so many here are thinking of ya.

I am way behind in reading the posts---- so sorry to hear things took another bad turn. You have been through soooooooooo very much and so many changes in your life. I am sure that it is hard to stay positive.

I will be hoping that somehow things will soon turn in the opposite direction for you- so just maybe you can enjoy some relief from all this.

Really sorry to hear about this. You are so wonderful on the board and I look forward to seeing you back soon-

Congrats!!! Doing a happy dance for you--- well, wish i could do a dance-------but how wonderful for you.