Hold Tight....

I always say expect the unexpected because you never know where your blessing will come from or how it will come. Lately I’ve been feeling as if God was silent in my life. I’ve taken a very hard hit with my health and I’ve been overwhelmed beyond words. Last night after a very long day of dealing with doctors I went to bed with a wounded spirit.

Today I woke up to a dark, gloomy day with thunderstorms. I didn't think it would get better. With a killer headache from my HIV medication and Sophie in my arms, I decided to linger in bed for a little while longer. I turned on the TV and to my surprise it was breaking news of the Chilean miners being rescued. They were rescuing number 11 when I tuned in. I was happy for them for sure, but it didn't seem to have a impact on my life one way or the other. And then from nowhere it all started to make sense. It blows my mind when and how God shows up. And when He does, you know in your heart that it was just for you. Yes, the thing might bless more than you, but you know it was what you needed at the right time.

Going to commercial break they repeated a quote form the second miner to be rescued Mario Sepulveda Espinace speaking of his reality trapped in the mine. “I was with God and the Devil. They fought and God won. I held on to God’s hand, the best hand. And at no point in time did I doubt that God will get me out.”

It reached to my very core and reminded me that all I have to do is hold on to God’s hand as tight as I can. Our faith is the thing that God wants most from us. It’s the thing that will sustain us and the thing that will deliver us. So today, my faith is renewed and from my faith I will gain the strength to complete this journey no matter how difficult it may be. Like Mario said, all I’ve got to do is hold on as tight as I can and God will surely do the rest.

I was encouraged by Mario. His spirit is phenomenal. He emerged from that mine as if he was at a pep rally. Even in his interview it was clear that God has purpose for his life. I see why the miners chose him as their spokesperson. He said other things that resonated with me also. While it was clear that he was happy to be out of the mine, he didn't waver on his concern for the plight of his people. He used this world wide press event to talk not just about himself but about the plight of his people. It reminded me that God has a purpose for my life and it should always be at the forefront no matter what is going on with my health. My health is the catalyst for the work that God has appointed me to do.

He also made it clear that he is not a celebrity but a worker whose life is committed to this work. WOW! I try to tell people that every day. My go for it attitude and glamorous way of doing it changes nothing. I am my ministry. My life is not my own. It belongs to God. So while the devil and God are fighting it out I will continue to hold on tight just like Mario! I’m grateful for Mario he was clearly a gift from God right on time, at the most unexpected time. God’s time is not our time. That is a fact!!

Health Update: Tomorrow I will have an endoscopy and a biopsy of my stomach. The only real way to diagnose this stomach problem I’m having is to go in. I will have to go under anesthesia and the procedure should take about 4-5 hours. With AIDS you can’t take anything for granted. My stomach issues can be something as simple as very bad indigestion or I could have a parasite, bacteria or ulcers in my stomach. Tomorrow they will go on a fact finding mission to determine what it is and how to treat me. The doctor has some ideas, but I want it confirmed before I put it out in the universe. There is still a national shortage of the anti-viral IV medication that I need to treat an infection not related to my stomach issues. So the doctor and I have made the very hard decision to go ahead with the other medication. Now the other medication has pros and cons. The good thing is this infusion is once a week for about 4 hours. Unlike the other IV medication, which is once every day for 4 hours until I’m better.

The con, well it’s a big one: renal failure. Yes my kidneys are at risk. So I have to take an additional medication to protect my kidneys. I will take 4 pills 3 hours before the IV infusion, 2 pills 2 hours after the hr IV infusion, and 2 pills 8 hours after the infusion. Now the medication that I will take to protect my kidneys has side effects also. Mainly nausea, but there is a chance that I could have an allergic reaction. The class of medication this belongs to, I don’t tolerate to well. And it has created burning rashes before. So we will see. If I have a reaction to this medication to protect my kidneys then I will have to stop everything. Cause keeping my kidneys safe is major.

So how long do I take this IV medication? I don’t know. This is all experimental. There is only one published study on using this particular anti-viral medication for my infection. And my doctor has not used this medication in at least ten years. It was typically used for some of the infections people got with AIDS in the old days. So we are gonna have to wing it. Watch my kidneys closely and take it from there. Does the IV medication have other side effects? Yep. But the list is too long. I just have to wait it out and see how it all affects me. And hopefully it will work against this infection as effectively as the other one and I emerge in one piece.

So through all of this I will be holding on tight and asking for your prayers. Also I’m asking that you continue to support my blog. I know I have not been here as often, but your continued support means the world to me and shows potential advertisers that I have a strong following. So please keep coming back weekly, and tell your friends...

Monday Reflection: Born To Fight...

Here I go again faced with another dilemma. Living with AIDS is an absolute Bitch. And I promise you if I wasn't the woman that I am, I would just quit. Just throw in the freaking towel. But God never gave me the quitting spirit. I was born to fight!

AIDS is relentless. I can’t even describe the uphill battle living with this disease. I want to say something positive, but there is no goodness in AIDS. NONE! I get so pissed when people reduce managing AIDS to a chronic illness. It’s much more complicated then that. And I won’t even tackle the stigma attached to this illness that no other illness seems to have. If you become infected with HIV, yes we can treat you but, your life will never be the same. That is the bottom line! And if someone tries to tell you it’s a walk in the park, they are lying. HIV/AIDS is complicated and treatment is complicated. Prevention is the key to winning against HIV.

So here I am again. The last time I reported on my health I was having some really kick ass stomach virus. Remember my blog No Easy Solution. Well, they put me on a drug holiday to solve my problem. I was off my HIV medication a total of four weeks. And I promise you I was a nervous wreck the entire time. I mean, I had nothing fighting HIV in my body and that was scary. I started back on my meds a week ago today. Yes, I am having major side effects and readjusting to the regime has been a challenge, but I'm doing it. (Mostly headaches, nausea and fatigue.)

So was it worth it? Well, the drug holiday sort of worked. I got some relief. It was so bad I could barely eat a thing. My relentless nausea went away for the most part. My food sensitivity also decreased. I can eat a cupcake, sort of. Ok, so what am I saying? Well, I got better but it didn't go away totally. Some foods still don't sit well and after I eat, I am so sick to my stomach. So tomorrow I see a specialist to see if there is an underlying problem that we missed.

At the onset of my stomach virus, I developed another infection. The one that requires me to go on intravenous medication. I’ve had it seven times in the last three years. It's left the doctors scratching their heads because the HIV medications are working for me and I shouldn't be getting an opportunistic infection. Those are the pesky infections that people with AIDS get. Some are treatable and some not so treatable. These infections are what kill people with AIDS. With AIDS you have no immune system to help you fight against them. The doctors think that there is a part of my immune system that won't repair itself and as a result I cannot fight this particular infection. It just keeps coming back.

So this time my doctor decided to give me a new treatment to see if it would work. Basically, this infection has been resistant to everything but IV medication. So we tried this new thing and it worked. WOW! It was a long shot but one worth taking at the time. Anything to keep me off IV medication. Things seemed to be going great, I was getting better but then a week ago the infection took a turn for the worst. We believe that being off my HIV medication for so long left me vulnerable. With HIV running wild in my body the medication I was taking was not enough to fight this infection.

So we came to the hard fact that I had to go back on IV medication. The doctor made the calls to get everything arranged only to discover that there is a national shortage. YES, I said shortage. The company has stopped production and is planning to begin again some time soon. Not uncommon when there is a low demand on a medication or if there is a problem with production. So I left the clinic extremely depressed last Wednesday. My doc decided that she would give me three different types of medications to try and treat this with the hope that it would hold me over until we can get the IV medication. But it only took five days for the infection to grow and I mean grow. So now it’s on its way to being out of control. Now this is the deep part. Hope you are able to follow me. The infection got worse a week ago because I was off my HIV medication. Remember, nothing to help me fight it. But now, it’s taking a real dive because I’m back on my HIV medication. WTH? Right! It’s called Immune Reconstitution. The best way to describe it: the immune system gets a boost from the HIV medication and the infection inside of you fights back by attacking your body. A while back I was hospitalized for seven days and bedridden for a month because of Immune Reconstitution.

Yep. When I tell you that HIV is complicated I mean it! Your best bet is prevention. So what do I do? The doctor is calling around today to see if she can find the medication anywhere. If she can’t, she will have to put me on another IV medication that’s even more dangerous to the kidneys then the one I typically take. It will probably mean I will have to do a drip of saline after I infuse the medication, which will add some hours to the amount of time I’m on IV daily. I’m waiting to see what it all means. I’m praying for the best medication, but I understand I have to take what I can get so I can get better.

Sometimes I wonder how I hold it all together. But I was born to fight. When I was born to drug addicted parents, I weighed three pounds. I stayed in an incubator for a month and I survived it. I know that I keep it together because God won’t let me break. I have to remember my history. My t-cell count was 8 at one time and I made it. So why would I think this is any different.

I have to draw on the small things that bring me joy. Like knitting, reading a good book, fine chocolates, fresh flowers weekly, a cup of tea from the best of leaves with a cupcake, my art collection and of course cuddling with Sophie. The list goes on. Nambi being old and fussy with a bark that drives me crazy, my friend Luke calling me three times a day cause he’s nervous and concerned, Audrey inviting me to lunch, Jay coming to sit with me after work, and the family I have created Tweeting, always praying and concerned about my journey. And even the people in my life who I know think about me daily, even when they don’t call because of their own journey. Yes, it’s the small things that keep me together. So today, I’m grateful for the small things that God has given me to let me know that my fight is not in vain and to bring me some joy in the middle of the battle.

Monday Reflection: Coping...

I always want my Monday Reflections to have some meaning and to add value to the lives of my readers. But today I seem empty. Void. Have you ever felt void? Like there’s nothing there. Like everything inside of you took a vacation. That’s exactly how I feel, empty. But I know that’s not true. I know that there’s a lot inside of me because some days I feel like I’m gonna explode. But yet today I just can’t seem to call up any emotion or be creative.

Could I be so sad that I’m numb? Could I have so much going on that to think about any of it would require more then I can handle? Is this my reality, that to cope I do nothing at all? I think about nothing, I do nothing. I can’t even seem to talk to God beyond each morning when I say thank you for another day. Yes, I’m admitting that even prayer is hard to do these days. And when I do pray I simply say, “Lord, you know.” Cause He does know. Yes, I’m void of deep and profound these days. I’m just trying to keep me all together and my head above water. So I cope as best as I can. Some days I draw upon everything and others, like today, I do nothing.

In all of it, this I know for sure: I got way too much going on. Way too much. I need a break and a breakthrough. What I also know for sure is that God has not forsaken me. As sure as I have AIDS, I’m sure that God has got my back. But when you keep getting hit, you wonder why it seems that God is so silent. And for me, what appears to be silence from God, shuts me down. I know I should be in His face day and night, night and day.  But what would I say? He knows it all.

AIDS has to play itself out, that is my reality. I have AIDS and with it comes a heavy load. The physical and emotional roller coaster of this disease is no joke. I know that God’s got this, but I live in the reality of it all. I have AIDS and it’s one hell of a disease. This Bitch is mean! I live and, yes, it lives. We are bound together whether I want it or not. The consequences of my unprotected sex has me fighting for my life for the rest of my life. I made a choice about my life and body and nothing will ever change that. So in the right now of my silence I will find comfort. Comfort in my history with God and His promise to me. That all things work together for good to them that love the Lord and are called according to His purpose.

I know that God is working even in my silence. I also know that God won’t let me break no matter how far down I bend. He won’t let me fall, no matter how low I go. So I cope as best as I can and leave the rest up to God. I take it one day a time. Like the Gospel song goes: I don't know about tomorrow... But I know who holds my hand...