nadine

will continue thoughts and prayers - glad the first round went well

Claire- if you get info from your neuro, please keep us updated. I just get puzzled looks when I have mentioned it to three already. I felt like I was crazy until this discussion came up.

Just wanted to say welcome. I don't know your hx, but I see in one of your comments that you work 10-12 hr days on your feet. I am sure you are exhauseted! I was doing this up to a year ago and now can't stand up more than 15 mins at a time!! Welcome-

Congrats for getting through such a process!! I am working on my appeal paper work now. I hope you hear soon!

I also worry about being home alone, when I used to cherish the time. Like Babs, my 21 year old daughter is at home and a great help-but she also needs time away with friends, needs to work and school. I hate the added stress of babysitting me, that both daughter and husband have, so I like them to get away. However, whenever they are away- they worry. I am fortunate to have great extended friends and family. I just received a card in the mail from a dear friend who said " I think we are do for a ladies night, chick flick and a big bucket of ice cream, call me and I will set it all up." They are wonderful and I hope you have many friends who will do the same. I am sure you do. I also have a very poor diet when alone, as I can do little- friends all chipped in and purchased premade home cooked meals that I can just micro or warm up, no prep and they are wonderful meals. I highly recommend this as a gift idea. We have a few places that make these meals for purchase. The internet, computer games , movies and reading(when able) also really help me.

Last year I wasn't able to do any gardening at all and it isn't much better. I am able to do very little activity. My garden patches are also broken into several small areas and I worked on my front one, just a little longer than yours and I sat on a small fold up chair with water and just moved down as I went. I really could not do it without my husband for fear of passing out. I did manage most of the weeding, he did the mulching and it felt sooooooooo good to do something that I like. Still have several more patches to work at-hopefully I can do a little at a time. Husband has sooo much on his plate already and I love doing it. I also have to do it when there is no sun.

Sounds like your name is most fitting.

Again, this is the only place I feel normal - ALL the odd sensations are the norm here, such a relief to read this. It can drive one crazy trying to figure things out sometimes!!! When I stated it feels like vibration, more than electricity, I agree that a tuning fork would also describe it as well, buzzing. I also find that the klonopin will sometimes help, at least take it down a notch.

Well I am glad to hear you have been given more info. It is nice that your husband and daughter are planning their trip and will take it day by day. Sounds like you have given it some thought and have a plan. It is also good that he now has a cardio apt., although some time away. In the mean time having the monitor for a month will be helpful information for that apt. in Aug. I Hope they have a wonderful father/daughter experience and that you are able to then meet up with them.

I hope you continue to improve and have many more good days. I agree to be careful to pace yourself. If I am lucky I may have a total of 4 good days a month, on a good month and I just want to do as much as I can. I will then pay for it for weeks. Wishing you continued good health!

Thanks for your response and I hope this is a positive treatment for you!

I can certainly understand your desire to "go postal." I really don't understand what the plan is about all the stated irregularities with his heart??? This makes no sense. A sedative may help with the stress, but does not address the cause of problems. Sure seems like he needs cardio visit and odd that they would not refer for echo or something. Does he have followup planned? You stated he did not mention the nodule, does he not want to talk about it? Thinking of you-

I don't know if I would call it an electrical feeling. I always have a hard time explaining this to my physicians, but what I feel is sort of a vibration feeling throughout my entire body. It is def. worse in legs and feet though. It is the strangest thing. I am on beta blocker, but don't think it has anything to do with it as it is random when it happens.

It seems in reading several posts, that many are having a hard time emotionally and physically. The heat doesn't help and we long to do things we formerly were able to do when the weather is good. Sorry you are having a bad day- hope tomorrow is better

Seems we all have the same problem, yet when I use the A/C that is necessary -the transition going in and out of rooms, house and car are far worse. Tomorrow I have plans to finally attempt to get a haircut ,if I feel well enough and someone will drive me-but it is to be in the 80's and I fear I will not be able to tolerate going in the heat at all. Car will have A/C and hopefully salon, but again just going out and back in makes me really sick. Going to give it a try anyway

I wish you best of luck with your treatments. Has anyone had a negative experience from corticosteroid use? Last year I was prescribed Medrol after inner ear trauma and I really believe that is what did a number on my body. I haven't been the same since. I had multiple reactions and all the orthostatic problems increased as well as balance ,walking and muscle problems to mention a few.

I have had CFIDS for a very long time and for me it was never really sleeping too much, but more pure body exhaustion as well as many other symptoms. I have never been able to sleep long periods of time and often don't get enough sleep, which makes the symptoms much worse. I was always a morning person, but since this last illness, I have a real hard time getting my body to physically move in the morning. I have no physical tolerance what so ever. I have taken medication for about 20 years at night to help me get at least 5-6 hours of straight sleep. I rest, but not sleep all day. I could use a little more sleep!

I hope you never feel you can't express yourself. I certainly relate to your expression of wanting it to all end, meaning you just can't stand the illness anymore and how it affects your life. I often feel this way, but doesn't mean I want to end my life and I am not saying you did. I think your posting may have seemed that you were at an extremely low point and I don't know really know you, but was very concerned. It seems that those who have been longer members were more concerned. You have a very strong will which is keeping you going and I have great admiration for that. We must stay determined and goal oriented, but I haven't found anyone who hasn't had to make adjustments when dealing with chronic illness. You add a lot to this forum from what I see, so keep on doing it. Have a good day.

Thank you for your work at updating this site. I am still new and enjoy putting faces to names. Wonderful pictures. I guess I will have to work on one, but I have always hated the camera pointed at me.LOL. thanks again for your work and for the people who share them.

Did your husband have his followup with his PCP? How can they state anxiety without complete cardio workup and what about this nodule that was seen??? This just doesn't seem right and of course there is anxiety with everything he has experienced and not knowing what is going on. I find it hard to believe that his extreme weight loss,if in a short period of time was anxiety related. I really hope you can find a specialist who will look into this more. GOOD LUCK!!!

Congrats to you for starting your group, I am sure it will grow as word gets out!! It takes a lot of energy to run a group or even attend a meeting, so good for you!! I had at one time, many years ago, had a phone support system going for CFIDS. We were not healthy enough to attend meetings and this was a great support before the world of internet and email.

Persephone- I agree with Tearose, sometimes you just need to get it all out. Good luck to you with the school counselor, hope you get a fantastic one!! take care

Applied, also as my LTD through employer insisted. I also had never planned on being out of work this long. Thought I would be back months ago. Anyway, recently denied and now will have to appeal. Interesting that when I reviewed their medical info used to make decision, most of it was several months old- even though I had just faxed recent records to the case tech.!!!!!!!!!!!! Most frustrating. I will attempt the first appeal without an attorney I guess.

I am hoping that you will soon find someone to sort this out for you and that he will be able to stay nourished to gain strength. Thoughts and prayers will continue for your family.

thinking of you and another set of prayers coming your way'