Tuesday, June 25, 2013

Finally Making Headway on Meds

July approaches and with it the third anniversary of my diagnosis. It’s tricky when people ask how long I’ve had AIDS because I’m never sure how to answer. I know I contracted the virus sometime prior to 2001 but didn’t know anything about it until I became ill in 2010. As the anniversary of my diagnosis draws near, I wonder how many other women out there are skipping through their lives, as completely clueless as I was for a decade. I honestly wish that doctors would take a more pro-active approach to testing patients regularly. The more people who are tested and diagnosed early, the more infections we can identify and treat, further slowing the spread of the virus. Once people with HIV are in treatment, their viral loads can be suppressed with ARV medications. Once patients become undetectable, they are far less likely to spread the virus unknowingly to others. Eradication of HIV will ultimately depend on putting the virus down long enough to prevent new infections and finally regardless of the absence of a functional “cure”… it will die with those of us unlucky enough to have contracted it before effective treatment and detection became widely available. Dare to dream.

While recovering from my badly broken leg, I discovered that my ex-boyfriend, Danny had discovered his infection in late 2001 when he became sick with PCP and was hospitalized. In spite of the fact that we were still very close friends at the time and had frequent and numerous conversations both in person and over the phone, he made the deliberate choice to hide the information from me. For ten years, he and I played darts, bowled together, spoke on the phone and hung out with each other. He was there for me in every way a friend could be as I wandered through my life and relationships ignorant of my exposure. He knew he had exposed me prior to his diagnosis, and just hoped that I would never become ill. When I did and almost died in 2010, he continued the deception, never telling me the truth. When he finally let me discover his deception, I was crushed. I could have been in treatment ten years ago. I never had to get sick. I could have learned the truth while I was still young and healthy enough to really have made a difference. Perhaps I would have been able to incorporate my HIV status into my life and found a loving partner… so many what-if’s. The financial toll that his decision had on my life is immeasurable. There is no way to recapture that lost decade.
It has taken me several months to come to terms with the damage he did to me by not telling me such an important thing. I forgive him for being afraid to tell me but I can’t trust him as a friend the way I once did because he seems not to really care what his deception has cost me.
My most recent labs have given me reason to be more positive as my current CD4 count is above 250 at last and my Cholesterol counts have improved. Other than the remnants of a bad cold, I am feeling well and am working at 100%. I even attended a ride with some of my motorcycle club a couple weeks ago. It was nice to see my new friends again and I have enjoyed riding my motorcycle again. I am a bit more cautious on the bike these days and likely will be until my confidence returns.

I have been to the eye doctor and now have multi-focus contact lenses allowing me to discard my ever-present readers. It will take a bit of time to get used to wearing contact lenses but I like that I no longer have to have a pair of glasses handy in order to see up close. I’m now able to take up crochet again and am currently working on some hats and scarves for my daughter and granddaughter for the holidays.

Charlie is well and has grown back a great deal of his beautiful black coat. He is once again a fluffy boy and easily the most beautiful Pomeranian on earth.

Life is good and will continue to improve as I keep positive and grateful for all the good things in life.

Come back and read again. I'll try to write more often now that life is settling down a bit.

Love, Betsy

Monday, March 11, 2013

Awakened from a Nightmare

Here it is a new year and I have finally returned from a five month absence.

My odyssey began on October 21st when I made a rookie mistake while riding my new bike. A car cut me off in traffic and I grabbed the front break in a panic and went down in traffic badly breaking my left leg. 
The bone broke at the top, near my knee. I was not injured otherwise. I was taken to USC trauma center where, after a night with my leg in traction (a hole drilled through my heel and a sandbag dangling below), the surgeons fashioned an external-fixator to my leg to hold it in place until a surgical repair could be done. They said it would be about ten days. It turned out to be 28 days. This is how it looked: 

Note the four open wounds into which the rods have been placed to fix this outer skeleton to my femur and lower leg bones. 
My medical provider sent me home like this where they left me without care for 28 days. 
I finally contacted my case worker at AIDS Project Los Angeles, crying and begging him to help and although he spent several hours on the phone… he came away just as frustrated and with no answers about what they intended to do with me. Finally, I couldn’t stand one more day and called an ambulance to take me to St. Joseph Medical Center in Burbank. When I arrived… I made sure I was visibly upset and I demanded they admit me and find a surgeon to repair my leg. They did admit me and scheduled surgery for the following Monday, November 19th. Unfortunately for me, the hospital released me and I returned home to wait until Monday. I awoke the next morning with food poisoning and by the time they got me back to the hospital, I was too dehydrated for surgery. Ultimately, I was given three blood transfusions and released to a nursing facility. 

To make this long story shorter… I finally had surgery and this is how it all looks today: 

I’m walking with a brace and a cane and getting around pretty well. And, yes, I intend to get back on my motorcycle. This time with a hard lesson learned and a better idea of what can happen when you don’t pay attention. 

My mother passed away December 4th. I did get to see her one last time just after my surgery. The hospital released me to her same nursing home for one night and I got to sit with her and hold her hand. I knew I wouldn’t get to see her again. It was bittersweet. She has been gone for a while since her stroke and I’m glad she is free to roam heaven now. I really miss her and could have used some of her wisdom these past months.

I’ve been staying up on my meds and even though my latest CD4 is still only 136, I feel really good. No complaints at all.

There’s a subtext to my story which I’ll write about in my next entry.

I hope everyone is well and thanks for sticking around.