Health Update #4

I hope you all aren't getting sick of these updates, especially since they're not real examples of my writing which was really the purpose of this blog.  I feel I owe it to everyone who cares about me though to keep writing these posts until I get it all figured out.

I went to the doctor today thinking I was going to start a new set of HIV medications, but it turned out that for some reason neither I or Dr. Onorato understood, the lab was unable to get the results we needed from the test she ran to see if I can take the medication she has in mind.  She ran the test to see if my virus is resistant to the potential medication.  Since I've been positive for so long there's a chance I cannot take it.  Since we didn't get the results we hoped for she took more blood today, both for the medication test and to obtain my current viral load and CD4 count.  Basically, I went in just to get blood work done.

She said I'll have to come back in another two weeks (the 29th) and hopefully then I will start a new course of medications.  In the meantime I have to be really careful not to get sick and she told me to go ahead and take my remaining Trizivir.  Phew.

I guess this means I'll get another two weeks of freedom from adjusting to medications, but at the same time it's more waiting and more wondering.  Really, I just want to get this whole mess situated and find the combination that works.  And hopefully get my viral load undetectable.  I've only been undetectable once, so it would be beyond fantastic to do it again.

As for the psychiatric part of my health, my psychiatrist put me on Trazodone (again) to hopefully get rid of my anxiety attacks.  For the last three weeks or so I've been having panic attacks at least four or five times a week and the worst of all are the ones that wake me up in the middle of the night.  I can handle the depression and mania that come with being bipolar (for the most part), but I absolutely cannot handle the anxiety attacks.  They disrupt my life and make me miserable.

Unfortunately, I found out that Trazodone interacts with Norvir (Retonovir), one of the meds I will probably start for HIV.  Balls.  I guess it's okay though, because it hasn't really been helping the panic attacks like I need it to anyway.

I'd like to say thanks to my beautiful Aunt Pat for taking me to the doctor today in the raging heat.  :)  I love you, lady!

I promise to start posting more of my writing soon.  With all that's been going on I haven't been putting pen to paper as much as I'd like to, so I'm going to make more time for that.  Writing is my ultimate therapy, so I need to do it as much as possible.  Journaling is one thing, but turning out something worthy to be read by other eyes is just about the best feeling in the world.

Dear Momma

Dear Momma,

I remember you today. I wish though, that I could remember you healthy instead of only vague memories of you during your battle. I wish I could remember the scent of your hair or the sound of your laugh. I wish even more I could remember your love.

On days like today, I try to imagine what you would look like. Would you still be the skinny, petite little thing you were? Would your hair be grey? I am most certain you would still have your sparkling crystal blue eyes and a smile that spreads through everyone around you. Those things could never fade with age.

I cannot even begin to imagine what the last years of your life were like. What must have been going through your head and what fears you had to face. You were so strong and always so beautiful. Through it all, you never lost your grace. Just as you were throughout your life - a kind, loving, genuine soul who never ceased to find a reason to smile - you were so in death. You fought long and extremely hard to stay here for me and Cody. You refused to let go until you were assured we would be safe, loved and well cared for. I can only hope that I will be as valiant and elegant in my own battle.

I wonder what you would think of your daughter today. I know, at the end of your life, you probably had little hope that I was not going to follow you soon after. Back then, there was not much hope for someone like me, like us. I bet you would be surprised that I have lived and thrived for 18 years since and I have no doubt that you would be thrilled.

Would you be proud of the woman I have become? I'm sure there would be things you'd wish I'd done differently or made different choices in, but I hope that overall you would be proud to call me your daughter. I hope too that you would love the man I've chosen just as much as I do and that you would be pleased to call him your son.

It breaks my heart when I think of all the things we have missed out on in each other's lives. Mostly, it's the little things, like not being able to come to you for advice and a mothers hug, or not having you there to support me in the milestones of my life. I hate the most that I do not know that feeling of a mother's love. I have no comprehension of what a mother/daughter relationship is truly like and for that, I feel supremely robbed.

For my entire life, I have felt a deep sense of loneliness that I have only recently realized comes from your absence. I would never blame you, for I know you were just as much a victim of life's cruelty as I was. Only, you feel no pain now.

If I could have one true wish in life, I would wish to know, to remember, that feeling. I think my soul would be more complete if I could. Sometimes the pain from that wish takes the breath from my lungs. Every day, I feel the emptiness. Of all that I have lost in my life, I think that is the most important thing. The one thing that trumps all others - not knowing a mother's love.

I wish too, that I could know you. Truly know you. I have been told a great deal about you, but I was never allowed the chance to know you myself. I want to know who you were. What your dreams were. Your regrets. I wish you could tell me stories of your life. Of your first kiss, your biggest fears and funniest moments. I would like to know all about your life's adventures. You only lived for 37 years, but I wish you could recount those years for me in your own words. There's so much about you I do not know.

I would be delighted to hear all about you and Dad's love story. All the ups and downs included because I know there were a great deal of both. I have and treasure a box of your letters to each other and it always lifts my heart to read of your love, so I can only imagine the joy of hearing it from you. I do not know if you two would still be together today, but I do know I would enjoy nothing more than to hear of my parents' romance.

I'd also like to be told of your childhood, your teen years and your first marriage. I'd want to know of both my brothers who have never been in my life. I'd ask you what it was like to lose, to leave, your children. I know it was your one true regret in life, what happened with Sonny and Daniel. I wish I could tell you that you're forgiven and ease that burden in your heart, but I cannot speak for them, only for myself. I can only assure you that I have, but I wish I knew the full, true story.

Momma, I miss you. I miss you and I need you more than I can even put words to. I wish we had more time. Hell, I wish we could have even one more day. Today I remember you and despite all the pain inside of me, I am joyous to have come from you. Thank you for giving me life and for loving me, if for only seven years. I miss you and love you endlessly.

Health Update #3.

The last week and a half has been absolutely insane.  Things are finally starting to return to normal, so I'm enjoying it until next week (the 15th) when I get to start the whole thing over again when I start yet another new round of HIV medications that will hopefully work for me without turning into the fiasco of this last combination.

I thought it was going to work out well because after the initial week I wasn't feeling too bad on them aside for some dizziness and nausea, but sure enough, ten days after starting the meds (Sunday) I woke up covered head to toe in a rash.  I am allergic to TONS of medication (pretty much every antibiotic and about a million other HIV meds I've taken in the past), so I knew immediately that I was reacting to the medications and not some other outside stimuli.  We had gone to Schiltterbahn the day before, so there was a bit of wondering if maybe I was reacting to either sunscreen or something in the water, but I knew deep down that it was the meds.

Unfortunately, it was Memorial Day weekend, so I couldn't get in to see the doctor until that Tuesday.  In that time my fever reached 102.3 and 103 degrees, so we got really scared.  I was delirious  and feeling absolutely horrible.  Thankfully, my doctor got me in as quick as possible and confirmed that yes, I was reacting to the medications.  We think it's was the Isentress.  She said that the sunlight might have exacerbated the reaction, but that it was definitely the meds and nothing else.  She gave me a Solu Medrol injection and put me on a taper pack of steroids to get rid of the rash.

She also did some more blood work to find out if I can take another type of HIV medications.  She said that with me being positive for so long there is a good chance I won't be able to take them because the virus will be too smart for it, but it might be my next option.  Until then, I am on absolutely no HIV medications for the next two weeks.  I have to be extremely careful not to get sick while I'm not on any medication, so for the time being, I am taking it really easy to hopefully insure nothing will go wrong in the meantime.

Here it is, a solid week later and the rash is just now finally starting to disappear.  We joked about how I looked like I had "plague legs" the whole week.  JD said I looked like his little zombie girl.  Horrible.  And of course, it's hot as hell here in Houston and this last week was the boys' graduation, so the entire family came down and I couldn't wear shorts or skirts to be comfortable and I not only looked like I had the plague, but I've been swollen as all get out from the steroids.  I've been absolutely miserable.

Within the last three or so days, the steroids have caused my gums to be inflamed and extremely painful.  Just eating a banana hurts so badly.  Brushing my teeth is like torture.  I described it to someone as the inside of my mouth is complete hell.  Hopefully, over the course of the next couple of days the inflammation will go down and the pain will subside.  Also, my glands underneath my jaw are swollen and painful, so I'm hoping that too is a reaction to the steroids and not anything I need to worry about while I'm not on any medication.  All I know for sure is that I am absolutely sick of dealing with all this.

Like I said, I will start the whole thing over next week, but hopefully I will be able to tolerate the next round of drugs and I won't react like this again.  Gosh, I hope so because I don't think I can handle doing this again.

My mental state is definitely not good at the moment.  My anxiety is through the roof.  I guess it's from all the stress and the stimulation as of late.  I've been waking up in the middle of the night with panic attacks.  Thankfully, the doctor gave me some anti-itch medication that also is prescribed to calm people before and after surgery, so that's helped a little bit, but not nearly enough.  I see the psychiatrist on Thursday and believe you me, I'll be talking to him about the panic attacks because they, especially the ones that wake me up in the middle of the night, are something I absolutely cannot deal with.

Thank you to all of you who have called/texted/emailed me over the last two weeks to check on my well being.  I don't know what I would do without the support of all of you.  I love you and am so blessed to have you all in my life.