The Why Behind The How

I have lived 25 years of excellent health with HIV.  Since my birth, I have always been an amazing anomaly - a miracle child that teams upon teams of doctors couldn't figure out. Perhaps that accounts for my failure to truthfully see the possibility of AIDS... I've always known it would most likely be my future, but it has always seemed like such a distant chance.  I have lived my life believing that if I didn't allow that reality to wallow around in my mind and muddle up my emotions it didn't have the power that it wanted to.  Essentially, if I believed I was going to get sick I would, and secretly, I've contributed part of my good health to just that belief.  I have never been ungrateful for the years of health I've had, in fact, I actively celebrate each year, but I've never been able to honestly see myself with AIDS.  Logically, I know that AIDS is, and always has been, the most probable ending to my life, but only recently have I truly faced the reality of it all.

When I last saw my doctor and she laid it on the line that I either change my medications or I get sick, it was like a punch to the gut. When she said that I am either resistant to or allergic to more than half the page of medications on the market it was sincerely mind melting. It was, and still sort of is, so hard to wrap my brain around that if this medication cocktail doesn't work I will have very few options left to me. What happens if I run out of combinations? Am I just completely and totally fucked? This seems both surreal and terrifying.

But it's real to me now. What if these medications fail me too? What if the side effects prove too awful for me to continue them? What if I turn out to be resistant to them too? What if I have no options?

Once, my semi-father in law told me I needed to make a living will. When he said it I was taken aback for a moment. I don't think of myself as dying. I'm sure there are people that do, but I don't feel like I'm dying. Yet, all that has been going on with me recently has kind of scared me into wondering if that seriously is something I need to look into. No way, I'm only 25! I don't need a living will! Or do I?

Just a couple of weeks ago, my brother showed me the Bible our dad had left for him. He had written a passage in the inside cover about who he was and how this Bible helped him through hard times in his life and had been his sanctuary in a time filled with nothing but obstacles and pain. He said that he wished his Bible be bequeathed to his son, Cody, so that he may find the same solace inside. He then wrote a dedication to my brother telling him that both he and our momma loved him very much, how he was a fine boy and how he wanted Cody to know that if he ever found himself needing guidance in his life to turn to those pages and he would find his way. Neither Cody or I are Christian, but the emotions behind his words are no less powerful. It was written in June of 1991. My dad didn't die till February 1995.

I cried, from deep inside my wounded heart, after reading it. I cried not only for my four year old orphaned brother, or for myself, but mostly for my father who years before his death was already accepting it and leaving things behind. It saddens me in a profoundly sharp way to think of my father sitting in his study or in his bed contemplating how he was going to leave his children behind.  Back in 1991 there was no help for you if you had the AIDS virus - it was a death sentence. My dad never got to see the day when someone could live 25 years with it.

I am scared that with the way my health is going right now I might be in the same position before I know it.

I have never told anyone that I'm afraid of getting sick. I guess they probably figure I am, but I'm so used to being the so stoically strong that it seems almost blasphemy that I should admit fear.  I watched as my parents wasted away to nothing, so much so that my dad didn't even recognize his own children at the end, but imagining myself in their position is not what truly scares me.  The truth is, I'm not scared of getting sick, meaning all the awful things that would happen to me bodily.  Yeah, it makes my heart pound to think of myself rotting in some hospital bed too weak to even wipe my own ass, watching the people I love the most finding ways to let me go, but my real fear lies in dying before I've left my mark, in the way I want to leave it.  I am afraid of dying before I've completed what I believe I am here to do - to write and to tell my story.

Maybe I'm seeing this through an awfully negative filter.  Sure, it's possible that these medications could be a miracle cocktail able to get my virus to an undetectable level and make me the healthiest I've been in years.  They could add years upon years to my life. Since I've changed doctors and am getting more comprehensive care, it is entirely possible I could have caught things before they get really bad and completely reverse the path the virus is on now.  That is the most ideal situation, but I think it's really important that I face the fact the exact opposite can happen. I need to confront that possibility and prepare myself just in case my life takes that fork. That way, it won't be as much of a shock and I will be able to handle it as deftly as possible.  And I see my writing in a new, more important and vital light.

If anything, this whole thing proves that we all don't have as much time as we think we do, so it's crucial to do the things you want to do without delay and fear of what ifs. Even if this isn't my time to get sick, it is time for me to accomplish my life's goals because I might not get another chance. I need to focus on my writing and on telling my story and not on the obstacles in the way because I have faced some of the biggest ones already.

My dad always told me I was going to grow up to be a writer, how he knew is beyond me, but he did, and on his death bed he asked that our story be told. As an ode to my father's life, and even more so to my own, I will be the one to do it, and this recent scare has just set this desire in overdrive. It's time and it's happening. Hopefully in another 25 years I'll be able to look back on the memoirs and novels I've published and remember this time as one of the biggest obstacles of all, but one I made it through, just like all the others.

Health Update #2.

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I had my follow up visit with my doctor today to discuss the results of my blood work and MRI.  There was good news, and bad news.

The good news is that my MRI came back fine.  The "spot" that used to be on my brain is no longer there and there seems to be nothing to worry about.  They did make note of some "benign lesions" on both sides of my brain, but they are nothing to worry about and are most likely caused by the HIV.  I was much relieved to find out things are okay on that front.

The not so good news is that my viral load (the amount of virus in my blood) is way, way too high and that the virus has become resistant to my medication, Trizivir.  I knew that my viral load was much higher than I would like it to be and that there was resistance, but my former clinic never made an issue of it.  I have been on Trizivir for about seven years, so it has definitely had a good run, but I am not keen on giving it up because I have had MASSIVE reactions to the majority of other drugs throughout my life and Trizivir has been extremely kind to me in that aspect.

Talking to Dr. Onorato today though, it became extremely clear that if I didn't make changes to my medication regimen there could be really, really bad consequences (i.e. getting sick).  As much as it pains me and scares me to start new medications, it's time.  :(

She put me on Norvir, Isentress, and Reyataz.  All in all, it means I will go from one pill twice a day to four pills total - one in the morning and three at night.  Still not that bad compared to the 75 pills I was taking at one point in my life.  Since the majority of the pills will be at night I think I can handle it since I will be able to sleep through most of the side effects.  I do NOT have a bright history with cocktail style regimens throughout my life.  All my past medications have had such extreme side effects that I did not take them as directed and all that nonsense (that's an understatement, ask my aunt).  It's amazing I'm still alive with my record.  Trizivir was a blessing.

The picture at the top of this entry is a list of HIV medications.  The ones circled in red are the ones I will start next week or so when they arrive at my pharmacy.  The blue is what I've become resistant to (actually I am unable to take that whole list under "Nucleoside/Nucleotide Reverse Transcriptase Inhibitors"), and the checked ones are ones I've taken in the past.

I am extremely nervous about starting the Norvir (Retonavir) because I have taken that before.  Back in the days before Trizivir it was a cocktail of six or seven Norvir in conjunction with some others.  The Norvir were about an inch long, were gelcaps and had to be refrigerated.  They tasted horrible and made me feel like walking death.  I was constantly nauseated, I couldn't walk from class to class because I was so weak, I had to carry water with me everywhere, and my lips/face were completely numb.  Needlesstosay, I wasn't on it for very long.

I explained all this to my doctor and she said that since I will now be only taking ONE Norvir instead of six or seven that I shouldn't react so badly to it.  I went to get it filled today at the pharmacy and was ecstatic when they gave me a small pill bottle with relatively little (about the size of an elongated penny) room temperature tablets.  I immediately shouted, "I LOVE YOU, SCIENCE!" and felt almost confident about this change when I saw that my most dreaded adversary had been vastly improved.  I went from having a panic attack to feeling somewhat good about the whole thing.

For the last few months I've been having near constant mouth sores.  It sucks because not only can I not eat, brush my teeth, drink or even swallow without pain, I cannot kiss JD.  Every time I would get one sore to heal another would come and I am entirely sick of it.  I explained this to my doctor and she said that it's all cause by my extremely high viral load.  I should have known that because mouth sores are extremely common in HIV/AIDS patients.  She gave me a dental paste to help heal the one I have now and said that once we get my blood counts stabilized (and hopefully undetectable) the sores should stop.  I sure as hell hope so because I am fucking sick of being in pain all the time and I want to kiss my lover!

So in short, I shall start a new medication regimen sometime next week, so please keep your fingers crossed for me that this change won't be a battle of trial and error as it has been in the past.  I honestly don't know if I can handle that, but it seems it's necessary for me to maintain my quality of life (and improve it) that I will have to.  Hopefully, this cocktail will work for me without too many side effects because I am pretty limited in the amount of drugs I can try and in my patience.

Thank you all for all your continued support and love.  You have no idea how much I appreciate it.

Lack of Concentration = Frustration.

I'm hoping I can even write this blog entry because lately I cannot concentrate on anything. I know that's part of being bipolar, but it drives me absolutely insane. Since I cannot concentrate on anything I cannot accomplish anything and it's creating a lot of self loathing.

I have my whole day to myself and under usual circumstances, even when I'm depressed sometimes, I can start and finish at least one project every day. Lately, I've not been able to finish any. Even reading is too much for my brain to handle right now. Not only can I not concentrate, everything seems to be rubbing me raw, as if my nerves are being grated with sandpaper. No matter what I'm setting out to do I can only do it for a few minutes at a time without either completely losing interest or without getting absolutely annoyed at whatever I'm doing. Usually, it's just that I plain cannot maintain a train of thought for more than a few minutes at a time. The only thing that I've been able to do is journal and only because I'm babbling about anything that comes into my head. I've not written anything of substance in at least a week. I cannot even watch TV without drifting off into Nothing Land.

I don't know if perhaps I am in the midst of a mixed episode (those are the times when I've lost concentration like this before) or if something else is going on. It is not for lack of motivation. Hell, I am actually super motivated to get things done, but I just can't find the mental capacity to do it. What the hell?

I'm hoping that if I set a set of daily (who am I kidding, weekly) goals it will be easier for me to get things done each day.

Tomorrow I will try to -

• Write at least 1,000 words.


• Read at least 5 chapters.


• Practice guitar for at least 30 minutes.


• Listen to at least 3 chapters of my audiobook.


• Do my yoga DVD and ride my bike if the weather permits.


• If time allows I will play WoW for at least 2 levels.

If I can accomplish at least one of these things tomorrow I will be satisfied. I will not be happy, but I'll be satisfied because it will be vastly better than I've been doing for at least the last two weeks. By not being able to accomplish even one of these simple things each day, I am beating myself up and getting so very frustrated with myself.

Perhaps I'm being too hard on myself. I mean, I am on SSI because I cannot always function at top capacity, but it still makes me angry. Especially when I desire to get these things done so much. I feel like a complete and total failure, which in turn will make me depressed.

Where is the happy medium here, where I can both be motivated and find the mental capacity to get the things I want to do done? I don't know what to do, but I do know that I cannot go on like this for much longer. Perhaps I am being too hard on myself, but I feel absolutely good for nothing. I need my brain back.

Health Update

I have some really great news concerning my health care.

For the last five or so years I have been going to a clinic in downtown Houston to get my HIV and psychiatric treatment.  Prior to being at the clinic I was seen at Texas Children's for nearly my entire life.  Since my parents are deceased, I received Social Security until I turned 19.  Once I turned 19 I had no insurance.  At that point I started my fight to get SSI.  To make a long story short, I was denied SSI three times and was forced to use county health care and start going to the clinic.

At first, it was okay at that clinic because I was still sort of under the care of Texas Children's doctors under the clinic's "youth program" until I turned 24.  Once I turned 24 things started going down hill.

I felt like I wasn't being heard, either by my HIV doctors or my psychiatrist.  They never really listened to anything I had to say.  It was like I went in there, said hello, they talked to me for like 5 minutes and then gave me prescriptions.  I sat in the clinic for over 6 hours each time just to see a doctor for all of 10 minutes.

Aside from that, when I would call the clinic to get a prescription refill, to schedule/reschedule an appointment, etc. and I would only get an answering machine and never a returned call.  I was treated like a number and it really seemed like I was not a priority since I still have HIV rather than AIDS.  I have had 25 years of relatively good health.  I don't want to push it and I deserve good health care before my health fails.  On the other end, when I was feeling suicidal or just plain out of control with my bipolar disorder I couldn't get an appointment within that week to see my psychiatrist; it would take months to get an appointment.  By then, I didn't always need to see her.

Thankfully, last May I finally was awarded SSI and Medicaid.  I still continued to go to the clinic, but was getting more and more frustrated with each visit.

Since I don't drive I have to use the Medicaid taxi service to get to my appointments.  I realize that beggars can't be choosers, but it's a little ridiculous when 2 out of 3 times the taxi wouldn't show up on time to deliver me to my appointments and I'd have to try to reschedule through the shitty answering machine system at the clinic.  Also, the last time I took the taxi I got stuck at the clinic until nearly 7PM (the clinic closes at 4) and I got kicked off the premises and had to walk three blocks to a Subway restaurant, by myself, in the ghetto of downtown Houston in the dark with no way to defend myself and wait until JD got out of work to pick me up.  I was absolutely terrified and I knew I needed to find a different place to receive care.  All these cons kept adding up.

The final straw was when I called to set up a psych appointment and they informed me that my doctor had left without saying a damn word.  They didn't call me to let me know anything and it infuriated me.  Sure, I didn't particularly like my psychiatrist because she never took the time to actually get to know me or took an interest in my bipolar disorder.  She just handed me pills and sent me on my way, but I still would have appreciated a call.  They informed me that I would have to start as a new patient with a new doctor at the clinic.

Screw that.

I decided at that point to find out if there was anywhere closer to Pasadena that I could receive both psychiatric and HIV treatment.  I knew that not all HIV patients in the Houston area go to that clinic.  There had to be other options.

First, I decided to find a new psychiatrist.  I got extremely lucky that there was one right near my house that treats bipolars.  I had my first visit a couple weeks ago and I was so pleasantly surprised.  The doctor was so thorough and incredibly kind and concerned.  He listened to me, shared parts of his life and made me feel like I was more than just a number, but a real person with a mental illness.  I feel so confident that this will work out so wonderfully.  He said he would never just up and leave me like my previous doctor and he has an emergency line and all that good stuff that I never had access to before.

As for my HIV treatment, I decided to try to go to an appointment I already had scheduled before totally abandoning the clinic.  I got up and ready for my appointment at 11AM.  I waited and waited and waited for the ride I scheduled a week prior.  Finally, at 10:50AM the taxi guy called me and told me I would be "extremely late".  The clinic will not see me if I'm late, so yet again I had to miss an appointment.

I spent that day calling my Medicaid insurance people 50 times finding my HIV treatment options.  I called probably 15 places before finally landing on a primary care provider in Pasadena and an infectious disease specialist in Webster, not very far from my home.  I had my first appointments on the 5th & 6th and man, oh man, I was so thrilled!

The clinics were clean, the staff at each clinic was respectful and speedy, and the doctors were everything I could have wanted.  I was given a full exam by the MD in Pasadena - palpating my stomach, looking down my throat and into my eyes, all that good stuff - for the first time in AGES.  I cannot even remember the last time the clinic did that.

The infectious disease specialist was even better.  She listened to me for close to an hour, never once making me feel like I was whining and taking up her precious time like I had always felt in the past.  They do all their labs in house and will call me and discuss my viral load and CD4 count each time the results come in.  The clinic never once did that.  In fact, I'm not even sure what my last lab work looked like.  I was so incredibly pleased with her and her practice.  My appointment was at 9AM and I was in and out with a complete exam and discussion by 9:59AM!  What?!  I was used to my appointments being an all day ordeal!

I am so, so happy and I really think this is going to be much better.  I feel like I will be getting the kind of treatment I deserve, like I used to receive at Texas Children's.  I am more than a number and I am important before I develop AIDS.  I am almost in tears thinking about how much better this is going to be for me.  I am so thankful and I'm keeping my fingers crossed that I've finally found a solution and can leave that damned clinic in the dust.

Thank you to all of you for always supporting me.  I love you.