nadine

Nina- I must say these are not your standard vacation pics!! Hope you had a wonderful, relaxing time!!

good luck

Morgan- Great social worker---helping your son and you!! I am so glad that you were able to get a response and this apt. so quickly. It is nice to hear the positive as far as getting in to see MDs and finding contacts. We certainly will hope for the best from this appt. It is so frustrating when we know our bodies, know something is very wrong and struggle with the correct diagnosis and treatments for so long and often not taken seriously!

interesting article---

Good luck on your trip. I am sure seeing your grandfather will be difficult, but something that is important for both of you. I hope the weather will be sunny for you, but not too hot. Take care.

so nice to see your post---- welcome back-- I am sure your dog was thrilled to see you!!! She was probably very confused while you were gone. Take care and take it slow--- don't over extend yourself--

Poohbear- that was a beautiful message. Melissa- I really only know you from this forum, your posts and website- what I have seen is an amazing woman of incredible strength, compassion, intelligence, faith and family, who is respected and admired by many. You have given so much here through this forum, despite facing the most difficult medical challenges of your own. I can't imagine all the emotions you are feeling right now. There are many here praying for you and hope that we somehow in some small way giving you strength and continued encouragement for the difficult road ahead.

I would speak with your physician who knows you best. I have taken xanax in the past --yrs ago and found klonopin was longer acting for me. Had to take xanax too often. Again, everyone is dift. and some of the antidepressants also help with anxiety as well. take care

Congrats-- I just had my hearing too and it is a relief to have it over --- it was also almost a 2 yr. process. This is so difficult, physically, mentally and financially, especially for those who have no other income. I also had attorney.

Klonopin- I take smaller dose during the day as needed and .5mg at night to sleep Have you taken anything previously that worked for you?

It is scary and I hate it--- especially when I am laying down and still feel that way. How long have you been on the florinef and have you called your physician to let them know about the episode? Hope you are feeling better!!

I had a horrible reaction to this medication, of course I have numerous sensitivities- like many We are all so dift. and what is horrible for some, works well for others!

I used one many yrs ago. -- so not sure how much they have changed. I felt it helped some, but had to keep cranking it up. It was for low back pain. I finally went to a chiropractor who was a combined chiro and PT and he helped me the most. I did not have all the symptoms that I am now struggling with- so it was not affecting my nervous system in any strange way. I agree it was almost a distraction from the pain.

You are not alone. The battles we have to fight on a daily basis make you just want to scream, yell, cry and give up sometimes- but hang in there and get your support troops to help get you through it. Is there anyone in your human resources that can advocate for you and assist you? If I understood you === this is a federal agency??? you would think they would be the most accomadating by the federal guidelines.

thinking of you ------

Continued well wishes to you Flop--- please continue to keep us posted on her health and possible hospital romance-- what a wonderful thing and I am sure it brightens the day some to have such an unexpected visitor and flowers too--ROMANCE OR FRIENDSHIP- wonderful Katie- you have been a dear friend to visit her, as well as keep everyone posted.

I would most deft. get the print out of the test and get another opinion and explain the symptoms you observed during the test. What you described are symptoms I had during my test, esp. the second time. I had not only the nausea, awful dry heaves, lightheaded, unable to speak, but also went numb in legs and arms-- didn't have the numbness the first time. The first time I passed out quickly and BP and HR both just dropped. Second time, I had been on beta blocker and it was a half hour of horrible symptoms and near syncope. This time BP and HR went both up and way down. Diagnosed with NCS and had tests at 2 dift centers. The first time I had two techs. that sat in front of me and made note of everything I was feeling, as well as vitals and their observations. Then had physician flying in as I passed out so quickly. Second time I had three people in room. 2 techs -one behind me doing vitals and writing and one beside me-holding up that lovely vomit catcher- sorry - as well as EP/Cardiologist who was watching me and talking to me the entire time ,as well as watching all the monitors. They were very brave and I hope they don't have to repeat it! Hope you are able to get some clarification ---

Oh dear, not the news I was hoping to read Flop---- I will keeep you in my prayers and I hope they soon discover what is going on!! Many well wishes to you--- Please keep us posted if you can Katie.

Melissa-- Many special prayers and wishes for you- I had just read your website update yesterday about visiting with friends and having seen some fellow DINET members and was so happy you had a few pleasant experiences----now this!! You stated that you knew it was going to be a difficult road and were ready to go to hospital at anytime, suitcase packed, etc. I pray that you get wonderful treatment and can get home again soon!!! I know your health care has been challenging-- Nina- I do know Dr. Bombay- and had a chuckle when I started to read that-- I am old enough to remember and watched it all the time!! I am also a big TV Land fan - the shows bring back great memories and better than most tv today. Take care Melissa--

I had two bad episodes of CFS when my daughter was young and it was very difficult- that is an understatement. I had a tote bag next to couch/bed filled with books, simple puzzles, coloring and drawing supplies, activity books, small crafts-just paper, glue sticks, things I could do in bed- books on tape we listened to together, didn't have to read ,just listened together, pointing to objects and turned the page- she loved the I Spy books or things we had to search for maybe some intereactive videos/dvds for children -when you can stand the stimulation, movies to watch together she is young and probably wants to be active, maybe some yoga stretching together, kids exercise and dance dvds she can watch in your room- can be quite entertaining to watch them do these things. creative play- teasets, playfood, dolls, leggos, lace up cards, blocks, lincoln logs, When weather was nice and I could stand being outside, I would have a lounge chair and let her play outside on riding toys, playhouse,etc. It is so very hard. My daughter is now a delightful young woman- she did ok. With this onset of illness- I now have several very young nieces and nephews. They climb up on my bed, which is in the living room and I have things we can do in bed. I have the same old puzzles, interlocking blocks, books and movies,coloring supplies. On your good days be creative and think of a few things you can have ready for those bad days, weeks. For me it was months. Can someone help with taking her out for physical activity to burn some of the energy when you can't?

Good luck with your Soc. Sec. -- unforunately,it is a long process for most.

I am sorry that you are in this position, but when someone doesn't return your calls and makes such an email comment--- well, I would call it almost a threat---- what friend does that? This sounds like an unhealthy friendship-- too many thoughts on this one--- I can't imagine a true friend doing this. Friends are there to support us when times are tough. She should be expressing how much she would love to have you, but understands your circumstances and will miss you!! Katherine - I love your comments. I also have friends who will support me, transport me, cook, or whatever, a party of 6-8 will come this week to bring dinner and social time -as I can't get out. They do this on a regular basis. I know that many do not have this support system for a variety of reasons, but this is an example of healthy friendships. I have had the "toxic friends" as I call them and I had to make the choice to let those relationships go- the draining, self absorbed relationships!

will be thinking of you and hoping to see you back here soon--- maybe family or friend could type under your screen name and let us know how surgery goes?? will keep you in my thoughts for sure

Jacquie, Not sure about the benefits, you may want to check Soc. Sec. website. If you were just approved, I wonder if they may question being well enough to attend classes--- but they do encourage training and trials for back to work without loss of benefits, so this may be worth looking into. What about starting with on line classes, to see if you can keep up with that and then move on to possibly attending part time? I think it would depend on how you are feeling and then looking into schools and seeing what they can offer you for accommodations- good luck!! it helps to stimulate the mind for sure!

I agree with all your thoughts about the PT Melissa- that has also been my experience with hospital PT and home PT. I also focus on just doing any ADL's that I can manage. I wear a pedometer and count my steps- it really gives my perscpective of how the day has been. If I can get beyond a few hundred steps- it's a great day!! That is usually bathroom trips. As far as the pool idea----- I may be wrong, but it doesn't sound like Ernie is a candidate. That was a PT order for me and they wouldn't do it. I was too high risk and they could not do one on one with therapist. There would be like 4 people in the pool. I was able to sit or stand a few minutes, it doesn't sound like Ernie is at that point. I did have some PT where they would just do simple things like arm and foot exercises for circulation, just very simple movements to whatever I could tolerate. Didn't get out of bed. Will keep praying for you Ernie-