Taking Back Control...

In the month prior to going on this last round of IV medication I was on top of the world. Overall, I was feeling BETTER. My Irritable Bowl Syndrome (IBS) seemed to be under control. I was having regular, everyday bowel movements.  I had more energy and was feeling great. I believe the combination of my new diet, working out and juicing was the sum total of my better days. I've been eating Paleo since the middle of October. Basically, meat, vegetables, fruits nuts and seeds. No dairy, legumes, gains or refine sugar . I was juicing everyday and working out everyday. I love CrossFit. It is the workout to get me off the sofa and the people of at River North Crossfit have been very supportive.

Then WHAM! I got another herpes infection. Man, oh man, you talk about being hit from nowhere. Yet, I was still determined to not let the IV medication stop my routine. Somehow, though, it seems that I lost my control with no return. That first week I made it to CrossFit one time. My body just was not cooperating. This round of IV mediation hit me harder than any others while on Cidofovir. I'm typically able to bounce back a few days after the infusion before I have to go back for the next one.

This round I was weak and nauseous the entire time.  I wanted to juice, but had no energy and my meals were 90% carryout. I could barely make a cup of tea, so cooking wasn't even an option. This lead to some depression and the depression led to emotional eating and this led me right back to a hard case of IBS.  Last week was the first full week off IV medication and I was sure that I would start to bounce back. I did make it to the gym 3 times but working out was hard and when I came home I was done for the day. This of course led to more emotional eating, mostly sugar. It hit me by the weeks end that I was really constipated, again. It had snuck up on me from out of nowhere. My back pain has been intense since last week and I just don't feel good.

I get it today, clearer than I ever have.  My body needs certain things in this stage of my journey. There has been so much early damage to my immune system that my body needs help to be its best, especially as I age with HIV/AIDS. Yes, the antiviral medication keeps HIV under control, but basically thats all it does. So it's up to me to do the rest.

This week I'm back on it. I will be at the gym everyday, even if it means I come home and crash. If I keep working out, overtime I will have more energy, just like before. Yes, it's disheartening on some level, that I seem to be right back where I was 3 months ago. That first month of doing CrossFit was hard and I wasn't able to do a whole lot afterwards. I know in time it will render the results I'm shooting for, so I have to start somewhere.

Yep, I'm taking back my control.  I Love myself enough to be good to myself. I only have one me and the choices I make today will impact my tomorrow. I wish I understood this when I was 20, before herpes, before HIV, but I can't beat myself up about what I didn't know. Instead I will take what I do know and use it to my advantage for my best life.

When I leave the gym, I'm stopping at the store to pick up items to get back to juicing everyday and I will be cooking, even if it's a light meal. I'm getting back to my chiropractor this week and trying some other alternative things like acupuncture and massage therapy at a new alternative clinic.

When I feel like I want to cling to food to comfort me, I will pop a grape in my month or have a slice of pineapple, rather than a cookie. Yes, there's sugar in fruit, but it's natural sugar and that's better than refined sugar any day. If I don't have the will-power to not eat emotionally right now, then I will eat the things that will do the least amount of damage to my body. Anyway, on the Paelo diet you can eat as much fruit as you want.

I've learned somethings about my body these last 3 months, it really does operate better under certain conditions. Every time I tried to have a big meal of pasta or some other unhealthy food, my nausea was compounded and my bloating was at full force. While I don't seem to be able to control herpes, I'm taking back the control I do have. I'm doing it today and I'm not giving it up again. My body is all I have and I want to be my best me for the rest of my life, even with HIV/AIDS.

Some Days I Want To Give The Fuck Up!

Some days I want to give the fuck up and that's some real talk right here. I've lived with HIV for 30 years and I've known my status for 27 of those years and this has been one fuckin hard ass journey and that's for real, for real. My pill load, the ups and down, the infections, the fatigue, the judgements, the doctors, the endless tests, the stigma, the side-effects from the medications, the trying to keep health insurance, trying to keep me alive, the growing old with a disease that's younger than me, all of this is enough to make you want to just stop!

On top of HIV/AIDS I've had to figure out my way in this world a lot sooner than I should have had too. As a child growing up, I had to try to out think Mama to protect myself from her, which no child on this planet should have to do.

Little Rae

At the same time, I learned all this self-destructive behavior that I thought was normal because the abnormal was normal.  Men who should have been protecting me, instead violated me and that was a way of life. I've literally been putting food on my table since October of my senior year of high school.

I was 15 minutes late for my curfew and Mama told be to go back where the fuck I had come from. For real! The next day I called home and she said, "Come get your shit bitch!" And that what that. She was mad that her husband was mad and he left. In my assessment, he was mad because I was old enough now to protect myself, since Mama had clearly failed to do so the 5 years that we had been a family unit.   

Then I  had to learn what normal was and apply it to a life that was abnormal. Don't you know it's easier to do what you know over what's right. My life has been a fuckin hard ass mess. But I never quit even when I wanted too. I got 27 years of education with honors, I've worked tirelessly my entire adult life to help the human race live and have a better life. I never quit in all the madness I've been faced with. 

Then I got Delta Sigma Theta Sorority, Inc. trying to tell me that I'm not good enough for them anymore after 12 years of service to them and a life time to the human race. Women are still gossiping about me, trying to explain to themselves and justify the rescinding of my honorary membership. Shit, they should give me a fuckin crown for the shit I have overcome and achieved in spite of. If I'm not an example of a strong black woman, whose fidelity is stronger than her pain, then I don't know who the fuck is. Oh, I forgot, I curse and I'm vulgar and that's an embarrassment  to Delta Sigma Theta. 

(If you want to get up to date on the Delta drama read my book, The Politics of Respectability, You can get it from Amazon  Click Here paper and kindle or you can order from my website for an autographed copy, Click Here)

So here I am at 51 years of age still trying to keep my head above water. As of late I've felt more overwhelmed and my crisis management skills have short circuited. I'm back on IV medication and this one is not a false alarm. For sure I'm having a herpes outbreak because the pain to my Clit is almost unbearable; yes I said Clit! When I feel that pain I wish to hell I had never opened my legs. But some shit can't be undone, you just have to face your culpability  in your pain and git and bare it. (You can search Herpes on my blog to get background on why I have to do IV medication.) The bottom line. I have drug resistant herpes that is complicated by AIDS and the only treatment that will make me better is IV medication. 

TUE Getting IV Medication

 I decided to do the IV medication at the clinic instead of at home because I didn't have it in me to deal with my mediport drama. And no they have not fixed the problem because two nurses tried to access it on Tuesday and couldn't.

So it seems that the only person that can access the port is the chief of (IV) Intervention Medicine at RUSH Presbyterian Hospital and he keeps telling me that there's nothing wrong with it. Sigh. Click Here for background on the Mediport

It's a once a week IV infusion, every Tuesday in the Chemo Clinic. I probably have at least two more rounds. This medicine is a bit more toxic than the one I have at home. I have to take medication to protect my kidneys while I'm on it. The side effects to both is a nightmare

So I started IV med on Tuesday. It's about an 8 hour day and a 5 hour infusion. I've spent the last 3 days sick as shit in bed and today is the first day of any work this week. Projects and commitments have gone the fuck out the window. I'm sad to say that Bracelet orders are packed and sitting at the door to be mailed and I'm depressed at shit. On top of that, business has been painfully slow and  I'm not sure how I'm keeping the lights on and the phone bill paid. It has been a day to day thing in the last few months and that's for real. 

And I tell you what, it feels like I've reach some kind of limit. I'm on over the fuck load. Most days I'm trying just as hard to figure out how to pay a bill equally as much, to not let depression take me the fuck out of here. I mean, I don't think it would be a cute look to let depression do what HIV/AIDS hasn't been able to do in 30 years. I'm just sayin...

So yes in all honesty, some days more of late, I feel like I want to give the fuck up. Then I start thinking about Sophie and she needs a Mommie. Then I start to think about the people who love me and the pain I would cause them. Then I think about God's plan for my life. The Bible says, "I formed you in your Mothers Womb." Really God? So you knew all along?

Sophie has been sticking to me like glue these last few days!

 Like when I think about it, I spent 6 months in my mothers womb sucking an umbilical cord laced in heroine and God keep me alive for this hard ass journey. Like are you kidding me God?

But at the end of each day, I get it! That God's master plan for this universe is for the goodness of God's people.  That means that God can take my nasty ass life and use it... Use it for someone other than me... Use it for the goodness of others. Use is for those who feel like they can go on because I do. 

 In my heart I have to believe that God's plan for my life is bigger than any one thing that I'm facing. So I don't quit even when I feel like I can't go on, I just do. I do because a selfless life is a life well lived. If God loved me enough to keep me here, then I have to love me enough to keep me here. So I muddle through these painful, difficult days, one day at a time. Now what's so amazing  to me is that God continues to show me the wonder of His/Her miracles. When the phone bill has been extended and the cut off date is fast approaching, even as close as a day before, from somewhere I get a small miracle. 

So I keep going because God's plan is bigger than my pain. I keep going because even small miracles come from God. We keep waiting on the pie in the sky, when God sometimes only gives fresh mana for the day.

In the end, all we can do is to keep moving. There is life in movement. For me, it's walking Sophie when I don't want to bath. It's reading a book, exercising my mind even if I don't want to move my body.

Sometimes it's moving from the bedroom to the living room with the big picture window so I can be reminded of God's wonder, the trees, the birds, the flowers, the sounds, the people, even living in a modest building amongst 4 million dollar houses make me smile. All these things remind me that I am alive. There is hope in being alive because I understand that life means that I'm still a part of God's earthly plan.  So I don't give the fuck up, I just keep going with the understanding that God's plan is bigger than my pain.

When Enough is Enough...

My last few weeks have been crazy, bizarre, difficult, did I say crazy? I was blind sided and it sent me over the cliff. For Real! The last time I wrote a blog I had declared war on my body fat. It took a minute but I got in a groove. I had made it to the gym up to 4 days a week.  I was back to a great routine, working on new bracelet designs, shipping out orders, working on the AIDS ministry at church. I was feeling good and feeling good about myself, then I got hit by a Mack truck. It seemed to all come tumbling down at the same time. I started to get nerve pain in my back. Then I started to feel wiped out and then I though I had an herpes outbreak. Well, it certainly looked like herpes to both me and my doctor.

You know then, it was time to go back on IV medication. I spent my birthday at the doctors, then came home to get the house ready to receive medical supplies and bags of IV medication.

Then Sophie woke up in pain. I rushed her to the vet and she had a decompressed disc. Then the nurse came to get me started on my IV medication and after 3 tries of accessing the port, she gave up. She said in 15 years she has never had a port this difficult to access. Then I had to got back to have the experts look at the port. It took a ton of ex-rays and eventually the attending to access the port

After messing around at the clinic then the hospital  for
8 hours in total, I came home to a very sick baby. I dropped my handbag on the floor and went straight to her pain medication. she was hurting and I was hurting and hurting even more that I had to spend the day at the hospital dealing with this damn port again. Oh, did I say that I had a complete and total melt down at the doctors office before they sent me over to hospital to look inside my port? Thank God for Deacon Erica who called right at the time of the meltdown, then came over to the medical professional building and went over to the hospital with me and stayed until I got registered, 

Sophie wouldn't walk pass the house. Most nights she was up and I was up with her. Nothing worse than a dog full of life being sick. Well, maybe her not being able to talk and tell me where she hurts. Those eyes of pain were a killer, for real.

Then I started IV medication and the side effects started to kick my ass. Then after a few days the port wouldn't flush so back to the hospital. Oh then the home health care nurse quit because she didn't want any liability for the port. So after going back to get the chef of the department to look at the port, which he did and got to work in like 30 seconds, my Infectious disease doctor took me off the IV medication because the herpes culture came back negative.

Now we are thinking that menopause is playing a jacked up game on my vagina! It's red and raw and itches and most days I want to cut it out and sit it on the side of the road.

Then Sophie, my bay girl, needed to go on new medication because week two and she still didn't want to walk. We were up most nights. Me trying to make her better and take care of me at the same time. Bracelet orders got backed up, my spirit began to crash.  Into week 3 and I had had enough. I shut down from the world. I've spent the last 3 days off social media, reading and not interacting with most of the world. I was trying to find the lost me. 

Then last night after 3 long weeks, when we got in bed, Sophie wanted to play with her toy. I of course didn't want to engage the world. Remember I'm still lost.  I just wanted to be sad. I mean she had been so sick. My vagina is still raw and red and my chest is still sore from all the poking; but Sophie insisted that we play with her pink uterus stuff toy.

It was as if Sophie had declared, enough is enough is enough. I got it! God spoke loud and clear through my little angel. So we are getting back to our normal routine. I'm up writing a blog, she's still getting her beauty rest. Which is a wonderful thing to see, because sleep hasn't come easy for her in the last 3 weeks. Bracelets orders will get filled and the gym is my plain sight. Will I get back to my normal over night? No... but if I don't start somewhere, normal will never have a chance.

You see, at the end of the day, there is always a morning. The question is, what will you do with your morning after the storm clears and your midnight has turn into day?

When we wake in the morning we are still a part of God's earthly plan. No matter what you are facing even when your morning feels like midnight, God still has a plan for your life.

The most awesome thing is in God's awesome love, we are blessed with the gift to say enough is enough, in our right now. We might not be able to change our situation in the right now, but you can change how you see your right now. 

Health Update! The Diva Is Back!

Last week I was MIA.... Life and health got the best of me. But I'm back!!! I will be blogging and video blogging all week long, as we move into World AIDS Day 2012 on Saturday.  I have a lot going on in my head that I want to share. I also want to do some reflecting on the topic of HIV/AIDS.

I don't have a speaking engagement, go figure. I guess the Lord knew my health would be doing the most and I would be trying to hit the road IV and all.

So I will be using all the veichels I have this week to address the issue of HIV/AIDS as the world shines a light on this disease. I'm getting better, but the side effects of the medication are doing what they normally do, get on my last freaking nerve. Sophie and I spent Thanksgiving in bed and thank God we had a couple of plates dropped off. I was touched. Anyhoo, my IV is done for the night and I'm going to sleep...  I miss blogging. Glad to be back. It feels right as I type. Someone once told me, that God's people are starving when I don't blog... They certainly have a point.

I will also be giving you my Holiday Gift Guide Ideas for the next couple of weeks, and starting this Sunday, I will resume my tea reviews... :) Also as a result of the Blog Her Conference I will be during product reviews from time to time and offer some raffles :).

I wanted to give you an health update so here's a short video...

I'm Over This Day Already!

I'm over this day already and it's not even noon. I just had the most intense moments trying to begin the IV medication. It was an #epicfail that caused pain and tears. I so need to get my life back!

This mediport has been an ordeal to say the least. First off, I understand now why I have been in so much pain. The scaring under my bandge was intense and when I saw what was there, it made me faint and caused me to throw-up. From my neck to my breast I'm red and bruised.

I was excepting one cut not two. Not sure how I missed that they were going to cut me over my breast. But it is what it is... Can't change shit, just got to figure how to live with it.

The nurse accessed the port this morning, but it was the most intense pain that caused me to become nausea  and cry all over again. I took a moment to regain myself and then I connected the IV. You can see below the line is connected. However, within 30 seconds of the drip going I felt yet again more intense pain and burning. The long and short of it, the line is out. I need to heal some more before using the port.

 I'm over this day and so is Sophie. She didn't know what to do for mommie during those intense moments but look on....  I'm going to drink some tea, Cuddle with Sophie, take some vicodin, sleep on and off, look at Wedgwood Queensware China on Ebay and Esty... looking makes me happy even when I don't have money to buy... It's like antiquing online..

Sophie Looking On and feeling Helpless.

Today's Video Blog...

Ima Sad Sap... But I'm Alive.... Video Blog...

Ima Sad Sap... But I'm Alive.... 

The Hardest Part of AIDS....

I sat in the back of the taxi yesterday as the tears flowed from my eyes. “Pull it together girly,” I kept telling myself. But no matter how hard I tried, I just couldn’t. “Here I go again. Here I go again,” I mumbled through my tears. I had just left the hospital having a PICC line placed in my arm and no matter how often I’ve had it, I never seem to adjust. For me it is the signal of the grueling task ahead of me: intravenous (IV) medication for however long it takes. The last time, just 3 months ago was for 23 days.

It’s the world of AIDS that is hidden by my fancy clothes, my hard hitting message and my overachiever attitude. But no matter how hidden the pain of it all may be, for me it’s the hardest part of having AIDS. Yes, I Facebook and Tweet about being on an IV, but I sometimes even wonder if people really understand. This time, when I discovered that I was going back on the medication, I decided that I wasn't going to talk about it publicly. Not that I was ashamed or anything, but I’ve been working on a social media project and pitching it to sponsors. I didn’t want them to stumble upon a tweet and think that I was too sick to deliver. Then I thought about it. I am sick whether I’m on IV medication or not. I have AIDS! And I also have an awesome ministry wrapped around this horrible disease. For me, there is not one without the other. If I'm going to get sponsorship and support, they can’t have the glamourous AIDS Activist without the AIDS.

So today I will begin blogging about the Hardest Part of AIDS for me and chronicle my journey on this IV medication. It began this morning when the home health nurse asked, “And why are you on this medication?” I explained that I have an infection that was resistant to oral medication, so this is my last resort. “I see,” she said. “And why is this infection so resistant?” She asked slowly. “I have AIDS,” I said matter-of-factly. And then it came, the look that said, “How did a nice girl like you, living on the Gold Coast, end up with AIDS?”

I bet no one ever had that thought about someone with diabetes or cancer or lupus or heart disease. Exactly! But nevertheless, we are so quick to compare HIV/AIDS to any other illness. Implied in that comparison is this: Having AIDS is no harder than any other illness, so what’s the big deal? But if we are honest about it, HIV is not just like any other virus and AIDS is not any old other disease. They both carry a social stigma that weighs down heavy on ones heart and spirit. It’s enough to have to deal with the daily routine of managing ones health but to be weighted down with the stigma of it all is all too overwhelming.

So this morning I gave the nurse no room for discussion about my life. There was no defense against her silent moral judgments that spoke loud and clear through her mannerisms. Today was not the day!! When I awoke, I was so fatigued that I didn't want to brush my teeth, and that was after 11 hours of sleep. I had a very sore arm from the PICC line placement and my skin around the bandage felt like I had second degree burns. I knew what was ahead of me, a two hour IV drip this morning and another two hour drip tonight. It would also be the beginning of side effects like nausea, diarrhea and more fatigue. I decided to save what energy I had for me.

Today I choose NOT to defend the incredible Black woman that I am. As the nurse was walking out of my door, with her eyes wandering around my apartment, she said, “Your art is beautiful” “Thank you, I've been collecting for about 20 years now," I said to her. She paused expectantly. I knew that she wanted more, but today was not the day...