new and venting

[summayya]

After many years of dealing with this shit ALONE .Ive decided to return to the only community that truly understands me. Ive been positive since Feb 23,1997 at 2:34 pm and life is starting to go downhill.I still have the drive to get up and go to work but the sick days are adding up and the diarrhea never ceases. I've been hospitalized 3 times this year alone and they finally found out what was wrong with me.Some infection that horses get Rhino something or another.Ive lost a total of 135 pounds and I look like a baby in my face. I'm glad for the new body I was over weight but I'm so sick of being sick.I have no body fat just droopy skin and bones.I'm glad to be here to share in the experiences of you all.I've come a long way and have been everything from a Peer Educator to a Counselor. Just want someone to talk to. I've never felt sorry for my condition I did it or maybe I should say my crack abuse caused it. Damn, that felt good to say.

[Dachshund]

Are you on meds?

[lilguru]

I think that many of us long term survivors have 1 thing in common.  We get sick of being sick.  I can certainly related to all of the things that you are going through.  I am thankful that I have never been hospitalized due to an OI.  My diarrhea is controlled with 4 imodium pills each morning and 4 in the evening.  I cut back at times when I know I will be at home.  Talk with your GI dr. 

Mentally, you have to realize that what you are going through is just that -- something you're going through.  I will pass.  Keeping a positive mental attitude is how I maintain my health.  You could find authors that you can relate to and get books on cd or if you enjoy reading there are many books.  Deepak Chopra is one of my favorites.  You can learn to separate YOU from your body.  YOU are eternal, this body withers.  Feel free to send email to me or reply here and keep in touch.

[southernboi59]

I have been Living with AIDS since 1989. I remember 4 AZT capsules every 4 hours. With my first prescription of AZT I was given that little pill box that went off every four hours. We were led to believe that if we did not come to a grinding halt, no matter where we were, and take the AZT then it was over. This also meant waking at night to take AZT as well. Then doctors began to wonder why we were tired all the damned time. I have seen a lot, I have had my fair share(if there is such a thing) of OIs. I n the early '90s I spent over a month,twice, in isolation in a hospital. Every one that came into my sealed room had to wear a moonsuit. My doctors never found out what I had, only what I did not have. Yet all these years later I am not a bitter man. Lonely yes, the romance goes right out the window when you tell a date. But hey, what the hell, my name is not Gaeton Dougas(Thank God in Heaven!) and I don't want to take anyone with me. This has been a long journey, and I guess that it is no where near over, so I give my thanks to God for each day and do the best I can. By the way I have been retired on disability since 1993.    Garry

[summayya]

I'm on meds SOMETIMES  Dachshund. I cant explain why I always stop when I reach that undetectable point.My Dr is always furious with me since he has been with me since the beginning
Southernboi59 you made me smile with the statement about the moonsuit.I can relate Ive had to visit friends and wear the moonsuit which made the both of us uncomfortable.
Lilguru I try to stay mentally stable but it hard when my husband of 10 years (not positive) calls me to say "you look sick today". He hates the weight lose. Hes very supportive don't get me wrong but somethings are better not said.I think separating me from my body is what has me this sick. If I spend have as much time caring for me as I do traveling and doing me I would be in great health. I'm thankful for the support that I have and I'm soooooo  happy to have this space to speak with others like myself.
A little about myself positive since 1997,mother of two grown children, grandmother to one little brat,advocate ,Counselor for a mental health agency. Its funny I have to keep my sanity to help all these people.Ive had numerous OI's but haven't been hospitalized until this year.Luckily I work for an agency that's very supportive about my health and mental state. I quit in March after being so sick and my supervisor said he wont hear it go get well and come back.Such a blessing. I think I may need to revisit the concept of separating me from my body. Examine it from a different angle it might work.

[BT65]

Hi Summayya,

Welcome to the forums.  I'm a LTS'er woman like yourself, and before I go on, I'd like to invite you to the ladie's part of the forum, particularly here:  http://forums.poz.com/index.php?topic=32885.0.  It's where we ladies talk about our dailiy "stuff," and there's another LTS'er woman besides myself there who posts.  It may help.

I have 3 grandkids, and I can tell you, they're one of the reasons I stay on my meds.  I want to see them grow up, and be with them throughout the process.  And I can't do that if I decide to stop taking meds, and stay sick all the time.  I don't like being around people when I'm seriously ill, which means isolating myself from the people I love, and who love me.  Perhaps you could investigate this further with a therapist (why you continuously go off meds).  Even counselors need counselors sometimes.

I hope you start feeling better.  Please let us know what happens with you.
  Luv,
Betty