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

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.

Love,

Betsy

The Root of Discontent or Maybe it's Just the Season Change

Wow, it’s been a while since I wrote anything for the blog…

I’ve been busy riding and enjoying my motorcycle. It’s been really good for getting me out of the house and doing things again. Have learned with each ride and have explored so many places I have not seen in years.

Have seen my new ID doctor but I’m not expecting to know my numbers until I visit her again on the 25th. I’ll be sure to update here when I find out.

I’ve been dealing with an unexplained bad mood since yesterday. I can’t put my finger on exactly why… maybe a combination of things. The fact that the police killed a man on a bicycle last night when their patrol car collided with the bicycle while they were in pursuit of the bicycle (in other words, the cops ran him down), or maybe it was Obama coming to town just long enough to collect six million dollars for his campaign… so many things to rub me the wrong way lately. The economy seems to just be absorbing everyone and everything. It seems everyone is so sick to death of being broke and feeling that there is just no clear path to any sort of financial security.

My grown daughter, a single mother, getting no child support, called me last night to say she quit her job. She has been working for a computer consulting firm in Northern California for a few years. She explained that she felt so miserable every day doing a job that she does because it’s a paycheck and not what she wants to be doing. I can understand. She feels that she has no quality time to spend with her daughter and that she’s not taking proper care of herself because of her unhappy state-of-mind. Again, I can totally relate. She feels alone and has been experiencing anxiety attacks. I wish she was willing to move closer to home where I could help her more. I can’t think of moving closer to her while my mom and step-dad are still alive. They need me and I know I won’t have them for much longer.

Her frustrations and dis-satisfaction with her job has only stirred the ashes of my own discontent with my job and the direction this company has taken over the past two years. We still have not moved into our new facility and even though the move is now imminent, I see that many of the same space problems we have in our current location will continue to be factors in the new building too. And it goes without saying that without some serious changes in the way management views its employees, little will change the general malaise that seems to have saturated the whole company. 

Last month, I requested small merit increases for three of my employees who have all spent the past four years being grossly underpaid, and the raise given them was a slap in the face. It amounted to about $10/week. Not even enough to cover the rise in the cost of living over the past four years. Even though the company is again thriving and meeting all financial and sales goals, it continues to underpay and undervalue its most important asset… its people. Why can’t they see that the reason this company weathered the storm and survived the recession is because of the sacrifices made by the people here? When do they get that credit? When will the company embrace them for their investment? So sad.

I’ll be at AIDS Walk Los Angeles this weekend to participate. It’s my birthday on Sunday and though I did no fundraising this year, I feel that being there as an HIV/AIDS positive person, is important. Please donate if you can at the AIDS Walk LA website: http://www.kintera.org/TR.asp?a=asJPI2MEJiKXJ9PWH&s=jmIXIhN0IjKXL9OYJxF&m=egILIRPCLgLIK5K

See you soon,

Betsy

Heck's Angel, Easy-peasy Rider

Happy August Everyone,

Well I passed all my tests, paid necessary fees, bought a beautiful new motorcycle, a helmet, some gloves, safety vest, tank bag and insurance and I’m officially a biker. I may be a newbie-biker but I’m getting more seasoned and will attend my first club ride on the 11th. It’s been great so far. I’ve put almost 300 miles on the bike already! I can tell that I will soon want to buy a bigger bike but for now, my 250 will help me learn a lot. The photo on my new drivers’ license is hideous. I sincerely hope I don’t actually look like the frumpy, homely old lady looking out at me from that photo.

My mom has actually gained a little strength and may surprise us all. I always knew she was too tough to just fade away. I wish she could communicate. I miss having talks with her. She has a terrific sense of humor and I know, if she could just talk, she’d have some pretty funny stuff to say.

My employer cancelled the meeting with my department. He offered no specific reason other than “You got your 10% back… I see no reason to meet with your employees”. So things are what they are and no changes in any policies will be considered for the foreseeable future. In other words, “Like-it- or Lump-it” is the general message. I tried, all efforts failed. Such is life.

Not a lot to write this week. I won’t comment on Chick-fil-A because everyone else has. Who cares if they’re dumb enough to spout their personal beliefs all over their business-model then they deserve the criticism. When you think about it, it’s probably more press than they’ve ever had before. I’ve never even seen a Chick-fil-A, let-alone eaten there.

Have you been watching the Olympics? I wish there were more Equestrian events televised. And wasn’t Bowling finally included as an Olympic sport? Billiards? My gosh, there’s Table Tennis (ping pong), Water Polo (who plays that?), and what about the one where they dance around with a ribbon on a stick? Can’t wait for the winter games with some danger and excitement!

Stay cool and have a great week.

Love Betsy

Chess and Harley Davidson Dreams

Hey friends,

Things rolling steadily along in my life for the most-part.

I’ve at last managed to convince management to meet with my department and discuss some of the issues we have with regard to remuneration and human resource issues. Since I last wrote on this subject, I’ve lost three well-trained employees to other employers who are willing to provide more opportunity, better wages and working conditions etc.. Others in the company are also exploring the possibilities of gaining better jobs.

Initially, upon learning that one of my employees is interviewing with a competitor, our CEO/owner was described to me as “livid”. He also threatened to call the prospective employer and threaten reprisal for hiring away our trained personnel. I told them if they did that I would consider it a mean-spirited and unethical action and would personally sponsor each and everyone’s job search. I also asked why it should make management angry to know their employees are seeking a better life for themselves and their families. Perhaps they don’t understand that happy, well-paid employees don’t job-seek in their spare time.

We have been granted a meeting next Tuesday afternoon.

Late development: A memo went out to advise as of 8/1/12 the company would re-instate the 10% pay cut we took three years back… but they would be taking the same 10% from our bonus pool to cover it. So essentially they are giving us nothing.

In the meantime… I completed my Motorcycle Safety Course last weekend and passed the riding skills test required to obtain my M1 license endorsement! YAY! Now all I need to do is make an appointment at DMV, take the written and eye tests, pay the fee and I’m official. I only wish I had a motorcycle to ride now. I’ll be patient though and get just the right one. I’m very proud of myself for having completed a personal challenge that I’ve always wanted to complete.

Soon it will be time for numbers again. I have been contemplating moving my care closer to where I now live. Driving twenty minutes just for a blood draw and then another half hour to see my ID doctor seems silly when I could choose a doctor in my network closer to my home. I’ll be exploring that option before my next CD4 count I think.

I’m very overdue for my routine mammogram so need to think about taking care of that soon too. If only job stress was the key to curing HIV/AIDS… and if wishes were Harley Davidsons… we’d all be riding.

Stay cool

Love Betsy

WTF is National HIV Testing Day???

Sorry, but tomorrow being "National HIV Testing Day" I need to grab and shake some people to get their attention. I’m so frustrated at the whole HIV/AIDS community and at society in general for what I perceive as apathy and denial. It seems we shoot ourselves in the foot before we even begin the march!

First: 

Where the hell are all these ridiculous public service messages about the dangers of tobacco coming from?? Who is paying for all this prime-time air time? And now I see PSA’s every day about Shingles, Pot-smoking, bullying, Autism, Diabetes…. etc. And in all the millions of dollars-worth of television airtime dedicated to PSA’s… nothing on the importance of testing or condom use. No information is offered anymore to the general public to help end stigma or promote testing, treatment or prevention. Why???

Second: 

ASO's and health organizations focus so strongly on the “at risk” populations that almost everyone else has been lulled into a sense of safety simply because it’s awkward to promote or encourage testing among populations perceived as “low-risk”. Aren’t we just fueling the stigma by focusing our efforts only at a certain population of people? Who will finally step out of the comfort zone and say what needs to be said to everyone? There are no “at-risk” populations? We are ALL at-risk!

Finally: 

How can there still be so many reasonably educated and otherwise intelligent people out there having unprotected sex and who are quick to say they are healthy and STD-free when, in fact, they have never been tested? How can they feel so secure? Most heterosexual people (of any color) who don’t live in “the hood” are completely unaware that National HIV Testing Day exists, let alone know it’s tomorrow. Worse yet, if they are made aware and WANT to be tested… and live someplace like Encino or Burbank or Toluca Lake… they will need to drive to West Hollywood or Compton to find a free test. Most have no idea that IF THEY ASK, their insurance (many are insured) will pay for the test.

So how can we have a National HIV Testing Day??? I contend that we can only measure the success of this day by the people we test who have NEVER been tested. Get testing beyond the gay community and the ghetto! Get HIV/AIDS into the faces of all those stupid, ignorant people who just assume they are safe because they are clean, white, heterosexual, over 50 or otherwise “low-risk”.

We should at least have as many PSA’s as the stupid secondhand-smoke zealots!!! My God!

Okay… Rant over.

Love to everyone… get tested… get educated

Betsy

"Why Don't They Call??"

So, a lot is happening in my life right now. 

My excuse for not blogging? Let’s put it this way: you know how parents complain that their kids never call unless they need money? Well that’s because most kids (using the term for anyone under 28) are too busy trying to overcome some mistake they’ve made and calling Mom or Dad to chat is rough unless you have some good news to offer. Blogging is like that for me.

Too frequently when there’s a lot of negative things happening in our lives, we tend to internalize those feelings of negativity because we only want the world to know of our successes, not our failures. Use Facebook as an example. Most people’s pages are chock-full of all the great, exciting and positive things they are doing, because after all, your friends don’t want to read about your ugly breakup, your teen daughter’s unplanned pregnancy, the three days you spent eating ice cream in a darkened room because you just found out your lover was cheating on you. Anyway… I digress. 

Several weeks ago my elderly mother fell at home and broke her hip. After surgery and some limited recovery, she has been placed in Hospice care at a nursing home. She just turned 81 but is not expected to live much longer. Over the past two years, she has suffered several small strokes, leaving her unable to speak coherently and with limited use of her right hand. I believe her to be perfectly lucid and completely aware but her inability to communicate has made her disagreeable and demanding. I know she is afraid and angry because she now has no control of her life. She is now completely dependent on others and is trapped in a body that no longer operates.
My step-dad visits her daily. They have been married for 43 years. I visit her as often as I can during the week and every Sunday. I always bring her a strawberry-banana smoothie which she eats lustily in silence. Every time I see her, she is a little tinier and a little more frail-looking and a little more… gone. I say a prayer each visit that she will be allowed to escape the prison of her useless body. It's a painful situation for us all.

Work continues to frustrate me but it is what it is and I need to try not to let it matter so much. It’s only a job and I have to accept the things I can’t change. I’ve discovered that boundaries and rules and circumstances which restrict me only make me struggle harder to circumvent the controls others put in place around me. In other words, the more you deny me or stand in my way, the harder I will try to find a way around you. I don't find much happiness when there are too many rules to restrict me.

I’ve decided to get my M1 license so that I can ride a motorcycle. I used to ride before there were restrictions and I’ve always enjoyed it but never taken the necessary steps to get my M1. This time next month, I will be able to rent bikes and begin the process of deciding what I want and how much riding I want to do. I’m very excited for the first time since leaving the hospital with my diagnosis. It really feels great to look forward to something again and I hope I meet lots of nice people at the Motorcycle Safety Program I signed up for. I’m hoping it starts a whole new phase of my life. Who knows, maybe I will finally start doing other things too. At least I’ll be trying something new.

More to come as my life progresses.

Love Betsy