21st anniversary of hiv diagnosis

[Dan J.]

May 1986 My bf Jeff and I had both had a nasty case of the "flu" & went to see his GP at the time. She didn't even bother to call us in to tell us in person, she did it over the phone. After she told us the bad news this compassionate doctor told us she could no longer be our doctor. She said she had a new baby daughter and couldn't run the risk of being infected. Back then most doctors weren't as informed as they are today I guess. When I found out & told my friends the news I felt like I wouldn't live to be  30. Back then there weren't many med to take. I lived in a sense of denial for several years and did extreme amounts of ecstasy (the real stuff), cocaine, alcohol. my relationship with Jeff fell apart & I started another one with a guy named Chuck. I infected him & have never really forgiven myself for that.  You name it, I did it to numb myself. It wasn't until after I moved back to my hometown, stopped living the destructive lifestyle I was leading to wake up and face my fate. It hasn't been easy accepting the fact that this evil bug pulses through my veins. Remembering struggling in the early 90's with AZT and the side effects. Remembering being hospitalized with pcp, intestinal parasites, the shingles., anemia, various O.I's Not to mention the friends I knew that are no longer with us.  Having to quit my job and go on SSDI in 03 really did a number on my self esteem. I was always a person that believed in working hard and earning your keep. It got to a point I couldn't handle managing 300 employees & working 60+ hours a week & staying on a complicated drug regimen. & became sick with pcp,, took medical leave & applied for disability. Now I  draw my check & work part time to supplement my SSDI but I have to watch how much I earn so I won't loose my medicare part d coverage. Most of the time I really miss being able to have the $ to do something or go on a trip. Things aren't so bad, at least I am able to cover the monthly expenses, but it's still kind of been a hard adjustment to make.

I haven't been feeling very well over the last couple of days. PN is raising havoc on my feet & I have been having bad tremors in my left hand. & I have not had enough energy to make through the day with out having to take an afternoon nap.

I am not sitting on the pity potty or mad. Just feeling a little blue & thinking about "the situation".

Currently I am taking a med combo combination that my doc has told me is in uncharted territory & if this fails he doesn't know what he will do with me. Sometimes I feel like have all the meds & "stuff" I've gone through been worth it to still be here? I have no hope for a "cure" at least not for me anyway.   

Feeling Blue,

Dan

[sdcabincrew74]

Well Dan, glad you have been around for 21 years and hope to see you here 21 years from now.  As for the meds, have faith.  We are all glad you are here.

[OzPaul]

Hey Dan

21 years, Wow !! You've certainly been through a lot. It is indeed a testament to your spirit that your still here, putting up a fight. I hope that the next 21 years will be  MUCH better for you as new medications and treatments come down the line. It's amazing to me that there are so many Long Term Survivors among us, many here at the Forums.

I'm glad that you still check in with us from time to time 

 BIG   ((((HUGS)))

Paul

[Dan J.]

I think the worst thing I had to go through was loosing my little black schnauzer, Oscar. I adopted him after I was released from the hospital in 2001. He helped me bounce back by getting me moving & having something to care for.  That tenacious little guy died in Feb 2005 & I haven't really gotten over him yet. I have another schnauzer now, but he isn't Oscar & we don't have the bond I felt with Oscar.

I'm haven't been feeling well the last week or so. Extremely tired all the time, PN is having a field day with me & these damn hand tremors make it impossible to write, hold a glass or grip things.  If I need to write a check I have to have  someone else to write it for me otherwise it is illlegible.

I'm going to take an afternoon nap now.

Dan

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[allanq]

Dan,
I was diagnosed at about the same time as you. Sometimes I feel like you, just kind of tired of dealing with it all. I have neuropathy, but probably not as bad as yours. I had those hand tremors several years ago, but they went away after a few months. I made the mistake of ordering soup in a restaurant once and got really embarrassed when I couldn't get the spoon to my mouth without spilling all the soup. I don't know why I got those tremors or why they went away. My doctor gave a fancy name to it that meant nothing ("essential tremors"). He didn't think they were HIV or drug-related. I wonder if they had something to do with anxiety and stress.

One thing that keeps me going is knowing that although I never thought of myself as a strong person, I managed to get through all this and survive. I've never had a partner, so I've had to deal with all of this pretty much by myself. I don't know how I did it, but I did. It makes me realize that I'm a lot stronger than I give myself credit for. I suspect that you are, too.

There are some new drugs that should be approved by the end of the year that might work for you. One of them is raltegravir, Merck's new entry inhibitor. Another is the TCM125, an NNRTI that seems to be effective even when there is resistance to other NNRTIs. Prezista works for many people (such as myself) who are resistant to the other protease inhibitors. You mentioned once that you are allergic to sulfa drugs, but I know of people who do not have a problem with Prezista, even though they can't take strong a strong sulfa drug like Bactrim (aka Septra).

My apologies if I went on too long. I'm not sure if you were in the mood for more information, or if you mainly wanted to let our your feelings.

I'm looking forward to meeting you in San Francisco.

Allan

[Blixer]

Dan,

I definately understand being a bit blue.  You have described several things that are "fears" of mine.  One of which is not being able to keep up with the life I want to live, including working.  But the great news is that you are around after 21 years.  I for one appreciate the trail that you have been a part of blazing for those of us who are more recently on meds.  I know it is a struggle and I know the frustration you must face from what you described.  We can only hope that the breakthroughs in the next few months and years will be sufficient to "fix" some of those issues.  And don't give up on a cure!  I know it may seem fruitless, but hold on to that hope.  Hang in there!  I know that you have been an inspiration for me.  Thanks!!!