Support Groups...

Ok....well I am a firm believer in communication.....I believe it helps to get your thoughts out and I believe we are intitled to our feelings and our thoughts.....and God bless those that do communicate in the CES forums but I cannot take it...I just cannot deal with hearing how sick those people are....some of them have been dealing with this for 20 plus years....some are dealing with stuff that I have only read about....but I cannot take it.....I cannot read about it....reading about it dims the light at the end of my tunnel if that makes sense to you.

I recently join a chat group for people who suffer of CES....this chat is a email based chat...I only use my Yahoo account for it....well today I checked my email and there were 234 messagaes...chat input on different conditions due to CES......well....I was overwhelmed....it was just to much for me to take in. The worst of it was that it seemed to me they were lifers....if you know anything about the military you know what a lifer is....well they were lifers.....there forever...always fighting the same battle...I can't be a lifer to CES....it is just to much for me.

I understand that my life has changed. I understand that I have to do things differently...but I refuse to give into it...I just can't. If I do it will be all over for me....I have a dream of walking without pain and without a cane.....I want to walk my dogs.....I want to go for a walk in the woods....I want to ride a bicycle just one more time.....I just cannot do that chat thing....everyone talking about not being able to do this or do that...well what the hell...what about what they can do.....there are people out there is no much more worse shape than I am in....I just cannot be faced with nothing but negativity and that is what the chat seemed to be.....I deleted them...I looked at two or three subjects and I just could not do it....it physically made me shudder....and for a rare syndrome there seems to be alot of people involved there....My new doctor said CES covers a wide spectrum of symptoms and it is hard to diagnose....well not hard but that is why doctors are slow to use that as a diagnosis....so many symptoms ....well maybe that is true but you know what...that is what it is all about for anyone...everyone I know has an ailment or a boo boo they need to take care of ....it does not end thier lives....nor do they give up.

In my opinion one of the worse symptoms that goes along with the CES is depression....well let me tell you...I do so believe that. This last time I went to the doctors I walked away with a good outlook but I so wanted a quick fix....I wanted this magic doctor at this magic spine institute to give me a magic pill and fix me....that's all.....and when I realized that was not going to happen I crashed...I cried for about 3 days...then I was just pissy....self centered and pissy...but you know what...thats ok. It is ok for me to have bad days and to be a bit pissy...it is not ok for me to dwell on it...it is not ok for me to give up. That chat line was so overwhelmings to me...I felt like these people were just to accepting...talking about disability and pain and it was just too much for me....I wish them all the best...I was sorry for most of them and counting my blessings....I am sooooo very very lucky....I think I refuse to mentally go to that horrible giving in stage....I just cannot give in to this...there has to be light at the end of the tunnel......right now I just want the pain to go away and I want to walk my dogs.....thats all.

Now lets talk sex.....I am so sexually frustrated...lol....I thought things were working right and now I realize they are not quite as willing physically as they are mentally. I thought it was going to be ok but now I am not sure....this new doctor has order what is called Pelvic Floor Therapy...it is exercises you do to help strengthen the pelvic wall...this is suppose to help with bladder control and with sexual feeling. This is, according to what I have read, and I do read alot....but this is normal for CES sufferers. I only know how to say this in the English language but it is not uncommonly reported by CES sufferers that stimulation to the clitoris will still produce orgasmic feelings and the urges to orgasm are strong but no actual orgasm is reached. So therefore mental orgasms are as important as physical orgasms....well I have to tell you I just want to know the plumbing still works....so in the mean time my poor husband is trying to be very understanding....we will see....omg....when I was able to have sex I was turning the poor man away ....now I am telling him we have to practice to make sure it works....I never thought sex was that important. I thought it was something that could be lived without. Now I realize just what a vital part of a relationship it is....a closeness that is only shared with a select person or persons at the time. It kind of seals the deal for me....express a level of love that can only be expressed that way....if CES robs a person of that well ......like I said...one day at a time and we will see.

Ok....I just needed to vent about that chat line...it was just to negative for me.....I am not going to leave it...but I am not going to dwell in the light either.....life is to short even if you have to wobble down the road you have to keep wobbling! lol

Heres wishing you peaceful and painfree days,

me!