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Postby dragonfly » Thu Mar 27, 2008 8:05 pm


dragonfly, cs's wife, here. I read your post at work this morning and you have been in my thoughts all day. I have an outside perspective from watching cs deal with increasingly debilitating symptoms ... I know how hard it is to have your life and your plans disrupted by things no one can even name for you. I wish I had something helpful to say, but please know that you are in cs and I's thoughts. Hang in there ... it sounds like you have a good doc who is committed to finding you answers. That will take you a long way.

Please do consider professional help ... but also be warned that not all therapists are created alike! If you don't click with the first one, keep trying.

How old is your son? Maybe you can find a children's book that explains in simple terms that dad is feeling sick and will have to play differently - that sort of thing. I'm in special ed, sorry if I overstepped, that's just always the first thing that comes to mind.

One day at a time!
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Postby dtyree » Thu Mar 27, 2008 8:23 pm

Hey dragonfly, and thanks so much. All the help I can get on this is much appreciated, and you did not overstep. Thank you.

My son is 10, whom we adopted from birth with a Vietnamese heritage. It was an open adoption and he knows he has two sisters. We recently received pictures of them which he promptly put up on the wall in his bedroom. Needless to say, he is the center of my life. He receives most of my attention and love (my wife gets a little bit too). But has the most sweet, sincere, forgiving personality of any child and I give to him all the love I have.

I did not think of getting a book to help with this. He already has 3 excellant books on sexuality, growing up, etc. which he keeps near his bed. Will still have to have that tough talk, probably soon. He is growing up quickly.

I did see a therapist several year ago, for what reason, I do not know. We hit it off very well on my first visit and will look her up.

Special Ed huh. You do have your hands full. Is this full time in the education system, or other? I have a friend that has 12 students and she can tell some stories.

Thanks again for your post and your concern. You both remain in my prayers.

Been called a "walking medical dictionary".
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Postby Snoozie » Thu Mar 27, 2008 9:39 pm

Hi David, I just said a quick prayer that you will find the answers to this and also to find some relief also.

I used to be really depressed about all of this but I have found that a shoulder to lean on has worked better than any anti-depressant. I quit taking them over a year ago and have really felt ok with the depressive part of life.

Once I opened up to a few of the ladies in my bible study class and quit pretending I was ok when they could clearly see that I was not I found warm loving support from them.

As far as my kids that is a hard one as my son asked today(he is 15) if I was going to be ok. I am in a bad pain flare and with all the extra doc visits I am going to (hmmm probaly why I am in a pain flare ha ha) he sees that things are getting harder. He also suffers with back pain as he has spina bifida occulta and grade 2 spondylothesis so we can each relate to living in pain.

I have people praying for healing for me and I will do the same for you...Sue
Seek peace, and pursue it. (Proverbs 34:14)”
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Location: the freakin desert with the bright lights

Postby bri23t » Fri Mar 28, 2008 2:18 pm

hi david....i actually read this post 2days ago but couldnt remember what the subject was to find it...i have been thinkin about u since and am very glad i found it again...

just wanted to let u know that i TOTALLY understand where u r...i do very little or plan very little anymore b/c i dont know where i will be physically when the event finally comes around...

i have a 4 y/o daughter and i figure that not making plans is better than making them and then disappointing her when they dont happen b/c im 'sick'...

and like u i too was raised to be independent...so asking for help or having to rely on other people (even family) is VERY tough for me...

for example i am going to tci next week and am in up state NY with only my husband who is in the army and not able to get off work to take me and i am not able to drive long distances anymore since i cant pump gas or get out to go to the bathroom...i have very little function in my left leg...i can pretty much only lock my knee to put weight on it but with out locking the knee i go down quick...

so i have had to contact family i have like 5hrs away to help me in figuring out how to get to tci...i HATE feelin like a burden to people and that is how i feel atleast once on a daily basis.....

anyway im rambling...sorry...just wanted to say i was thinking about u and could relate to what ur struggling w/...i have found that if i tell my self 'just for today'...i can make it through almost anything...

so just for today i can take a shower and fold some laundry...and since i have completed one of those i should get to the next one before i cant move anymore...hope ur having a good day...sorry this was so long!:)
dx CM and SM 09/05, failed PFD 10/05
VP shunt 11/05
removal of cerebral tonsils 1/07
SM (through entire spinal cord)
TCS and EDS dx at TCI 4/08
TCS surgery 4/08, pfd revision and VP shunt revision 5/08
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Location: TRINITY, FL


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