Don’t Give Up

13 Mar

I’m sorry I’ve stayed away from regular updates and I hope you’ve all been able to check in with me on PositiveLite.com.  I’m hoping to get back on track but I know you guys understand that HIV and cancer combined with the trials of everyday life is a LIFETIME movie gone horribly wrong. 

 

Do you ever have a day where you very nearly convince yourself this diagnosis never happened?  That they must’ve made a mistake and surely you don’t have this disease that other people get?

Sometimes for a solid five minutes I am able to tell myself that back in November someone made a horrible mistake- 3 times- when they went over my lab work.  “I feel FINE!” I say. And then my charming little HIV-related chest rash pops up and reminds me, “you ARE HIV positive. Shut up and take your pill”.  I forgot my pill a few days ago. I spend so much of my day trying to feel normal, hiding things, worrying someone will read the name on the pill bottle or find one of my scripts and wonder why I have to see that kind of Doctor.  I keep the pills in the bottom of my purse and if I don’t hear the rattle, I forget.  I get cocky with my “undetectable” viral load.  I shrug off the need to put a reminder on my cell phone.  I did download the HIV meds app, which is brilliant and very helpful.  But then I was terrified someone would pick up my phone to check and see what kind of cool apps I had, find that one, and the questions would start.

I know those of us living with HIV are normal.  I know that.  But I can’t help but hate how different we are too.  The constant alarm I feel when little things happen that I would usually dismiss. Colds, pimples, constipation.  I hate the symptoms it has brought out in me and the person I love which has made life a revolving Doctor’s office door.  I mean how many 26yr olds with an anal fissure do you know? That many, huh!?! At the beginning of this new year I was given the ‘all clear’ by my Infectious Disease Doc to only come back every 3 months. My viral load is undetectable and my T Cells are excellent. My Husband is still on a close watch, with a monthly visit, as a result of his Non Hodgkin’s Lymphoma.  We “wait and see” whether or not he will need more HIV medications because of his chemo therapy and everytime I walk into an exam room I feel like a dog who ran too far on a choke collar.  My air gets cut off, my tongue feels like it’s made of steel and my body shakes so violently sometimes I strain a muscle in my neck.  It’s really not cute at all.  I fear this is my new permanent state of being.  I know it’s not but sometimes that’s how it feels.

We are normal.  We are strong.  We have the right to live a life full of whoever and whatever we love, same as anyone else.  Is it too much to ask though that I be able to do it without an anal fissure ?

xoxo

 

Ambien Sounds

4 Jan

Everyone knows people dealing with chronic illness, or illness of any kind really, need their sleep.  That’s why I choose Ambien.  Or Xanax.  Or wine.  Honestly, I choose to be unconscience before 10:30pm.  I love sleeping.  And often times I either can’t get to sleep or I can’t stay asleep and for me it’s vital that I do.  Fatigue is easily the most difficult aspect of HIV for me to cope with.  You know, aside from society viewing those of us who are positive as disease ridden whores. 

Well usually I know enough to take my Ambien, close my eyes, and drift off like a good little girl.  Last night, however, I decided to plow forward and stay awake to watch Forgetting Sarah Marshall.  5 Minutes into the movie I began to notice the light beaming from Russell Brand and the fact that I had 11 fingers on my right hand!  I found this really exciting.  My Husband, the one who spent his entire day investigating his possible cancer and scheduling his surgery who has now convinced himself that I have cancer too- he was not so amused.  Once I finally started falling asleep I was repeatedly awoken by him asking if we should go to the hospital.  He didn’t know that when you wait too long to sleep the Ambien starts to make you a tad Timothy Leary and so naturally, he was worried that I thought I had 11fingers.

When he left for work early this morning he turned on “the big light” in our bedroom.  A big no, no when I am sleeping.  He woke me up, a bigger no, no-  and asked if I was ok.  I felt horrible.  What an asshole I was to make him worry about me like that.  As a result, from the time he left to the time my alarm went off, I was wide awake.  Serves me right.

I guess its back to melatonin and chamomile tea.  And 5 fingers on each hand.

Cancer, Kale, and What I Wore

4 Jan

I started writing a  reflective, tragic, Nicholas Sparks type a’ draft for this blog earlier today and it was so doom and gloom I ordered some sushi, chanted to a little Florence and The Machine and decided to start fresh.

As many of you know HIV is hilarious.  But Cancer is fucking bat shit crazy. Upon our diagnosis we obviously cried a lot initially because things felt pretty bleak.  One of my favorite comforting sayings to my Husband was, “ya know babe, this isn’t that bad! If we had pancreatic cancer we’d really be shit outta luck!”.  Why do I allow myself to speak?  A month later, there we sat in a hospital with the C-word chasing after us- chasing after him- with me powerless to fight it off.  But as with HIV, I know knowledge is power and ignorance is a one way ticket to demise.  I’ve quickly become an authority on all things vegan and raw and I can make you a green juice that will knock your socks off and liven up your liver qi.  I know I will help heal my husband no matter what his diagnosis.  I am reading so many incredible, inspiring works on raw, living foods and we have both adopted a mostly Vegan diet.I’m anxious to see how our TCells and Viral Loads change over the next few follow ups and I will keep you all posted with any advances. 

 Brenda Cobb, who wrote the Living Foods Lifestyle and founded the Living Foods Institute has had many clients come to her with full-blown AIDS and leave her care with undetectable viral loads.  I’m not saying its a cure-all or by any means a guarantee but certainly a little kale and some wheat grass is worth looking into, right?!  If we have a disease which by definition is an, “immune deficiency” than it should only make sense that we can reverse it and begin to heal or at least help ourselves live a healthier life by strengthening our immune systems as much as possible and pushing them into high gear. 

I sit in support groups and read blogs and message board postings from positive people who drink soda and eat shit and, “feel great” and I can’t help but shake my head and raise my eye brow because I don’t want to tell anyone how to live.  I have had my share of days where I’ve had more than one big mac and said,  “yes” to two pies for one dollar but as Oprah says Maya Angelou says, “when ya know better ya do better”.  And I know better.  And since I know I have a chronic illness which could potentially ravage my immune system, imma do better. Shouldn’t we all?  Sometimes as I’ve sat in my women’s group, sipping Kombucha with a Slippery Elm lozenge on my tongue and rice crackers in my pocket it has taken everything in me not to jump across the table and rip the Pringles out of one of my HIV positive lady friends’ hands.  Or at least pass her the bible, aka Kris Carr’s ‘Crazy, Sexy, Diet’.  And again, I’m no angel….I ate a thing of nachos all by m’self, alone, in my car yesterday.  But they were vegan. 

And I had green juice for dinner.

Also?  I’ve decreased my Prozac dosage BIG time and I’m doing incredibly well.  I can get thru the week with a nice flow of healthy emotions on about two pills a week.  I used to take one pill a day! BAM! And most importantly….my belly pooch has vanished.  Yes ladies and gents, screw emotional well-being.  I have a flat stomach. 

What lifestyle choices are working for you? And are they really working for you?  Do you know better, and can you do better and give yourself a better quality of life?  Let me know where you’re at and lets swap recipes for tempeh and sautéed kale!

Be well my loves.  Keep in touch. Eat your veggies!!!!

Love you!

 

 

 

Bring Wine

16 Dec

Last night I had friends over for dinner.  I text that the dress code was, ‘Chronic Illness Casual’ and ‘just bring wine’.  Life has been way too hectic lately to try and shower and look pretty and wear a push up bra while cooking chicken.  It was sweatpants and wrap sweaters and microwaveable sidedishes from Trader Joes.  Eat up! Pour me a drink!

Today is the follow up MRI and I am reminding myself to breathe and to live in this present moment.  At this moment our only illness is HIV.  And he is doing better every single day.  So that’s where we’re at right now.  But it’s hard and I’m just not looking for it to get harder.  And really…not that there’s ever a good time to possibly be facing cancer but, Christmas time? REALLY!? I can’t make it through a Carpenters song for shit right now and I’d like to watch  The Family Stone but I think I would drown in my own snot and tears if I attempted that. 

And ya know what’s really hilarious?! My Shrink is booked until February! FEBRUARY! I was trying to get in to talk through some of this nonsense, (because when you ask for Ambien for Christmas you probably should seek some professional help) and his receptionist (don’t even get me started on her) asked me “WHY” I wanted to come in.  I didn’t have the heart….or the energy…to explain and frankly it was none of her damn business so I just classified it as an “emergency” which I assume all crazy people do.  But HIV is a little bit more pressing than hoarding or not being able to get the voices to stop so maybe I should’ve mentioned my illness to get to the top of the list.  Instead I just got my Prozac refilled and hoped for the best.  I feel like a hack though because here’s my Husband…the one that might have cancer…waiting, and if he is worried, you’d never know it.  He’s feeling well, he’s chipper, he’s doing the laundry again (THANK GOD!) and I’m crying in grocery stores and buying lavender and beads.  And I guess you’re not supposed to cry to your Husband that you’re scared he’s going to die but, I rarely do things the way you’re supposed to, why would I start now?! 

 

Mother Mary Comes To Me…

7 Dec

My Husband’s Mother passed away some years ago.  I have heard from everyone who knew her that she was the best.  I always wanted a guardian angel.  Maybe I had had one and didn’t know it.  But from the time I met my Husband I felt his Mother’s presence around me often.  It was something I’ve never experienced before….I have heard her voice, I have felt her wrap her arms around me.  I know she and I would love each other.  I know she loves how much I love her son. And I believe she watches over us constantly.

And she has been the one I prayed to these last few days.  I prayed for her to come and take her boys pain and possible illness.  I prayed for her to make this train stop and let us get off.  I prayed for her to help me be calm.  And she did.  I know it was no coincidence that the 2 women who have come to give my Husband (a lapse catholic) communion in his room shared the same name as his mother.  And I felt her there today as we prayed. 

 

Thank you all so much for your love, support, and offering to clean for me 🙂

The 4pm Veil of Misery

22 Nov

Hi Everyone!

I hope you all had a wonderful weekend.  I hope you were kind to yourselves and those you love.  My weekend was at times blissfully happy and at times like a scene out of Postcards From The Edge.  

I’m prepping a healthy, blood sugar stabilizing snack in anticipation of what I have come to call the, “4pm Veil of Misery”. 

 As you’ll recall upon hearing of my diagnosis I made the genius decision to go off prozac.  It was quite possibly one of the dumbest things I ever did. Ever.  But in my mind the decision making process went something like this, “You need to keep your body really clean and healthy- prozac is bad and dirty!” And then I experienced the single most traumatic thing to happen to me in my life without the benefit of the one thing that was stabilizing my emotional well-being. No. Bueno. So even this past week when I started back on the prozac…I guess my body was taking it’s time getting back on the board because the mood swings were intolerable.  There was crying, there were texts to really bad people, there was the suggestion that my Husband and I seperate….it was really not cute at all.    I just was having a really hard time of continuing to “process” all of this when I can’t know what it’s going to look like until next Monday. That’s when we go back for our test results and to find out what medications we start and what the cost looks like.  I need facts and numbers, I need to know what I’m budgeting for.  I need to know.

So…after I cried through 80% of my Saturday.  Made my Husband cry.  Cried with my Husband.  Went to bed.  I woke up with the intention to stop crying, start living.  Get this shit as much in control as the present moment allows.  Cook the healthy, nutrituous, foods that keep us well.  Clean up the damn kitchen.  Let my Husband help out with the chores.  And the greatest gift of all- a private yoga session with a beloved friend and incredible teacher.  It was so nice to do something just for me that I knew was going to greatly improve my quality of life hiv or not.  We also did a guided meditation at the end that finally took me out of my problem and centered me deep in my own healing.  I felt the warm light within and for a whole hour I didn’t think about my hiv.  NAMASTE! It was sublime.  

*Incidentally- you can also do your own meditation.  http://www.meditationoasis.com/  That is my favorite podcast.  I find Mary Maddux’s voice to be incredibly soothing and the meditations are so helpful to me.  If like me you find it difficult to dwell on other things this might be a wonderful idea for you.  Meditation is a great tool for re-focusing your energy.  You can also find Meditation Oasis on Itunes.*

SIDEBAR….the gel is off the nails now and they are bloody stumps.  STUMPS. 

I also had my first session of acupuncture yesterday. It didn’t hurt.  I don’t know yet if it helped.  I felt pretty shitty afterward yesterday but perhaps that’s part of the process.  I went home and watch GIGOLOS on Showtime….that always makes me feel better.  I also resisted the urge to stop at McDonalds for a Number 1.  Medium. Hi C Orange. No Ice.  IN FACT! I just had an epiphany….I’m abstaining from BigMacs until my HIV Birthday next year 🙂 How about them apples!?!  I will if you will.

Love you!

 

 

Vegetarian,Yogi,HIV+ Goddesses Can Have Gel Nails Too!

18 Nov

You’ll recall when first diagnosed I made the choice to remove my long (very long) gel nails.  I know. I’m so brave. 

Apparently I said to my girlfriend, “because they don’t go with my disease”.  What ever the hell that meant.  Well…I had the nails taken off last week and they put some sort of gel polish on my natural nails (which look like stumps) and I hate it.  And my hands look like they were attacked by beavers!  They break, they are chipped and gross and they don’t look pretty.  And I don’t care if I’m going to look like I have claws when I downward dog on the yoga mat….I want my fake nails back! 

When I said the didn’t “go with my disease”- I guess, initially, I saw myself drinking kefir with a nose ring and thrift store jeans, singing Joni Mitchell and doing the head stand kinda yoga and growing my armpit hair- and that was how I would survive HIV.  But my personal style has always been Boho-Chic meets Mob Wives…and…  SIDEBAR: WHY is Diane Keaton playing with baby deer in her Chico’s commercial?! Sorry.  Back to HIV:  while I know there is inevitable change in the air, can’t I still be Catherine Denueve with a dash of Carmella Soprano while being an HIV Warrior Princess?! And shave my armpits? By the way….if YOU don’t want to shave YOUR armpits, I fully support your decision.  I applaud you! 

What are your weekend plans? What are you going to do to be kind to yourself and healthy?  I’m going to a wonderful restaurant tonight with loving friends.  My dear friend found a great deal for us at a place we’ve all wanted to go and I’m looking forward to yummy food, good wine, and GREAT company!  Tomorrow I’m catching up with my best friend.  We’re way overdue for a girls day and she’s going to help me get the ball rolling with the website and we’re going to hot tub it up and enjoying being together! Saturday night it’s all about the family!!!  And Sunday I am SO looking forward to my first private yoga session with my dear friend who is an incredible teacher.  We’ll be sharing more of her knowledge and practice with you guys soon with yoga  tailored to the specific needs of those of us living with HIV!

I’m wishing you all health and peace this weekend.  Please reach out to me here or via email hivishilarious@yahoo.com or on Twitter if there’s anything you need.  Do your best to stay calm and make healthy choices.

Love You!

 

and we’re back!

17 Nov

2 days back on my prozac, some good news, and a few anti-inflammatory foods later….I’m back. 

I was thrilled to hear from my case worker last night that my meds will be covered by my insurance! *CHEERS!*  There will likely be co-pays but there’s a lot to work with there as far as assistance and options and hearing that news was like someone lifting a cinder block of pain and fear off of my chest and letting me breath.  It also fuels my fire to help the rest of my “family” out there….and to lift that cinder block off of others and help them make the impossible, possible.  And I will continue to work towards helping any and all of you do that. 

But yes. Wonderful, beautiful, much needed news. My Husband and I held each other in the kitchen (I feel like you must all think we never leave that damn kitchen…but we do….) and just kept taking heavy sighs of relief.  OK. This makes it a little easier to move forward and fight the fight peacefully, healthfully.  Because again, I don’t fear this disease.  I don’t, I won’t.

OK! As my crazy, fabulous Mother says, “onward and upward!” 

I’ve had some questions regarding my diet and what I’m doing moving forward to stay healthy. And as the blog continues to expand and hopefully grow into a website we will definitely have this as a primary focus as clearly, living as long a life as possible is hugely dependent upon your health habits.  And ya know what- having said that I have spoken with Long-Term Survivors of HIV who smoke, drink soda, don’t exercise and are working on 20+ years living with the disease.  But, I would never, never advocate that.  I can’t say I don’t sort of understand it but it’s important we don’t look to it as any sort of a reassuring excuse to pick up any of our old, unhealthy habits again.  From Mac and Cheese to Heroin….(because, you know, they’re so similar) now is not the time to get reaquainted with your, “bad shit”.

Brief Health Background on Me 🙂  I am a Chronic Yo-Yo Dieter, I am an emotional eater, a binge eater, a former bulimic.  I’ve spent half my life promising myself that, “the diet starts tomorrow”.  And then I hit 25 and the pills and the nonsense wasn’t “working” as well as it used to.  I hated to go out because I dreaded getting dressed and I had no energy and often wanted to nap during the day. I wore a size 16 and I really couldn’t look in the mirror anymore.  I spent hundreds- more like thousands of dollars on diet books that were restrictive, abusive in their rhetoric and just plain dumb.  Last spring, I met my Health Coach and everything changed when she opened my eyes to the idea that my entire well-being was dependant upon the “wellness” of each aspect of my life.  Physical, Personal, Spiritual, Financial.  And it wasn’t to say that each aspect needed to be perfected but they did need to be tended to.  During my time with her I finally learned how to balance my food, and my life.  I quit a job that stressed me out for one that gave me freedom and serenity(most of the time lol), I gave up some “friends” who were abusive and unhealthy to themselves and to others and I stopped trying to clutter my life with things and stuff and only devoted time to what I really loved and needed.  My family, my loving friends, cooking the healthy food that kept us strong and well, singing, and time.  Time is the greatest gift.  And sometimes you have to sacrifice to earn money for your family and get things done but when you have time to just “be”.  It is a gift, and you should accept it.  Which was part of my “new rule” yesterday that I made about no more google-ing when I got home from work.  Thats my time to take a hot shower, to have a glass of wine, to watch JACKASS with my Husband, (it helps, believe me) to meditate.  Working til I’ve made myself sick won’t help anyone.  Take. Your. Time.

So, diet.  In my house we mostly follow the principles of Dr. Andrew Weil’s anti-inflammatory diet – without the whole wheat pasta as we are also gluten free (and no one has celiac, and we’re not big Elisabeth Hasselback fans, it’s just better for our bellies). http://www.drweil.com/drw/u/PAG00361/anti-inflammatory-food-pyramid.html  But I don’t like the word diet and I am totally rolling my eyes and using the term, “Lifestyle Change” but that is what it is.  It’s a lifestyle change.  I don’t have a list of what I can and can’t have – I don’t carry a point system structure in my purse….I just know better and there are certain things I couldn’t fathom putting in my body anymore. (Unless I have just been diagnosed with HIV in which case, yes, I needed that Big Mac) And if there’s something I really “miss” I find a better way to have them and make them with REAL foods.  I, for the most part am vegetarian. It’s not because I love animals- I just don’t crave meat anymore.  I love chickens- I am lobbying for my husband to get one for the backyard.  I think cows are totally cute.  And I’ve been asking for a pig for years.  But I do like my meat and if it’s been raised kindly, I see nothing wrong with killing it to be used for a good purpose.  And when I watched the Fabulous Beekman Boys have their pig slaughtered, I kinda wanted to die a little but it also drove that point home for me.  But If I watched Charlottes Web immediately following I’d probably feel differently. So I like my gluten free oats and dried fruits, beans and my almond milk and almond crackers and soups, lots of brown rice and steamed veggies and garlic. Working with a digestive wellness coach opened my eyes to many gut issues and my “spleen deficiency”.  I also follow many of the dietary suggestions for a person with “dampness” (as it is referred to in chinese medicine) inside of them. Eating that way makes me feel fabulous and added bonus, made me a size 8!  This is working for me, keeping me healthy and at a healthy weight HIV or not.  Right now one of the most important things for me to focus on is keeping my liver healthy as I’ve learned many of the HIV meds can be extremely detrimental to your liver.  I’m totally loving Kombucha and tonight I’m making my first batch of Kefir!

I’ll let you know how it goes!

Love you!

 

 

 And when did everyone in the Tri-State area become so obsessed with leaf blowing?!

 

Please do not hesitate to reach out to me here or on my twitter page because if I can be of any help to you, I want to be.  And

The Balance Beam

16 Nov

So…the Gabby Giffords interview didn’t make me feel like an asshole. It just made me realize even more we’re all on our own journey’s to success and purpose.  Living the life we were meant to live even if we didn’t know we were meant to live it.

I have had a really rough couple of days.  I mean, I just found out I’m HIV+, so technically I’ve had a rough couple of weeks but these last two days have been especially hard.  Last night I told one of my closest friends my news and when we hung up the phone I tried to stay in my car, parked in my driveway, and just have a good cry.  But as soon as I hit the “end call” button and started to fall apart- there was my Husband -checking to see if I was coming inside. I had a moment where I thought, “oh please, PLEASE just leave me alone.  Just let me sit here and cry for two minutes without worrying about you and you worrying about me”.  But instead  I quickly swallowed the bowling ball sized lump in my throat and went inside to help him get dinner together. 

I walked through my house in a daze.  I put ginger ale in the microwave.  I couldn’t form my sentences. And every where I went I was forgetting what I was going to do or what I had come in the room for.  I hoisted myself up on the corner of our kitchen counter as I frequently do when I ask my beloved how his day went and put my arms around his neck just because I love the way his hair smells and how good it feels to hold him.  This time, I sat there and let my hands fall at my sides and began to weep.  “please just let me go.  please, please just let me take all the pills I have and go. I can’t fight.  I don’t want to fight this…I’m too tired to fight this.  It’s not fair. Make it go away. Make someone make it go away.  Why won’t someone fix it? I want someone to fix it! IT’S NOT FAIR! ”  He held me and let me cry and we decided I should lay down and watch something stupid on tv and eat some dinner.  I had let another day go by where I had spent my entire day researching hiv meds and how to get them inexpensively and exciting myself with facts and then terrifying myself with other facts.  I had forced 3 tablespoons of black bean soup and a bottle of Kombucha down my throat.  Both really good for me but nowhere near enough to sustain me.  I had some vegetarian chilli and blue chips….then I had a little cheese…and then I still felt hungry and I looked in the mirror and hated myself.  Hated my body and how it had betrayed me…or maybe I betrayed my body.  And before I knew it I was crying again. Only this time the crying was accompanied by howling sobs, shaking and a feeling I would never catch my breath. Ever. And again, my Husband was holding me and trying to make it stop.  And though I felt I had no right to ask….all I could cry was, “someone fix it, someone take it away”.  This went on for 20 minutes and felt like it would never end. 

I want to be a Warrior.  An Advocate. A Champion for HIV and my community. But I’m so tired.  I am so tired.  I’ve heard many people in the HIV community say that having this disease feels like a full-time job.  Well I already have a full-time job. And an additional part-time one.  And friends, and hobbies.  And last night I didn’t want another job. But today’s a new day, and in knowing that being this Warrior, Advocate and Champion is part of my purpose, I’ve decided in order to do it I’ve got to make some changes.

  • First- no more googling about medication, medication packages, support, finances. Nothing.  I don’t know what we’re dealing with. I can’t know until our blood work comes back and that’s not for two more weeks. So, no more.
  • Monday is MY day.  Monday is my “day off”  from work and from now on it’s my day to go to my support group, get acupuncture, and seek my other therapies.  I’m granting myself this day for me and me alone.
  • I’m going to be more responsible with my anxiety and pain management.  2 weeks ago when I found out I took myself off Prozac….yea…I know.  I don’t know what I was thinking either.  But it wasn’t until a dear friend pointed out to me this morning that I likely sent myself into withdrawal at a very dangerous time and was then also taking Xanax….it just wasn’t good. So now I know, and I’ll fix it.
  • I’m meeting with a wonderful friend, kindred spirit, and gifted Yoga Teacher this Sunday who is going to take me through a yoga practice geared toward my specific needs so that I can continue my practice on a daily basis.
  • And tonight I am promising myself 15 minutes to go through one of my guided mediation podcast for healing and to send love and peace out into the universe – especially to those battling the virus who are not blessed to have the Husband and incredible support network I have.  I want them to know and to feel that I’m working on it….I’m creating a “family” for them.

As with anything in life there is balance.  I’m sure I’m not the only one who’s ever felt consumed by this disease and sadly, I won’t be the last. But there is balance- even if it’s hard to get there.  I love the SHOWTIME original series, The Big C, and now it’s really taken on a whole new meaning for me, but I was rewatching an episode and heard this exchange between Laura Linney’s character, Cathy and a Nurse. 

: Nurse: “in the meantime try to relax”  Cathy: “and how exactly do you do that when you’re terminally ill?”  I know I’m not terminally ill but I have a “chronic medical illness” and it’s hard to relax but I know it will only make me sick not to.

Friends who are reading this….all I need is to know that if I need to I can lean on you.  I don’t need you to fix it. Just take care of us. And you can “take care” of someone in thousands of ways.  Everyone can do something.  And so I’m swallowing pride (and some prozac) and I’m asking for your help because I’m admitting to you that I can’t do it alone.  I’m tired and I need your love and support to get me through.  You wanna cook a healthy meal? You know someone who can give me a massage on a sliding scale or for free? Do you have a friend who would be comfortable disclosing their status and talking to me? No someone who would have the compassion and the technological savvy to help me start building my website? Wanna come over and watch Golden Girls? It all helps 🙂

You can also educate others. Educate yourselves. I thought it was enough that now and then I donated to an AIDS charity here and there but I knew nothing.  You can read and learn, you can volunteer.  Just a hug can go a long way.  As always I continue to recommend www.TheBody.com as a resource for the newly diagnosed, their friends and family and anyone else.

A few other resources…

http://www.siloamwellness.org/volnteering.html This is an organization I will be visiting soon to see what help I might gain from their services. Which are totally FREE!  How amazing is that?! The people there have been so kind and compassionate to me- I am so grateful. And you can also visit www.fight.org to learn more about Philly FIGHT they also accept volunteers and donations.

Finally…. as you educate yourselves learn about your state and it’s policies concerning HIV/AIDS and more specifically what your State and Govt officials are and more importantly are NOT doing to help fight this fight. 

I wanted to make it clear that my hope for my future is to help others living with HIV/AIDS Live, Laugh and Love a healthy life rich in nutrition, peace and joy.  But these tough times are part of the journey too so I won’t lie to you that are listening when they come about. They are here to teach us.  As my husband and I held hands and cried last night I promised him this is happening for a reason and it’s not a punishment.  Something better is going to come from it.

The Light comes from the Darkness!

LOVE YOU!

 

 

 

….and the HIV horse you rode in on…

14 Nov

Warning: I’m not wearing my HIV Warrior Princess pants today.  I’ll be lucky if I get out of my pajamas. So, I’ll try to throw in a pinch of humor here and there but at the moment I’m considering  taking some xanax and going back to bed.

Right now I am filling out a survey for pizza hut because I could win $1,000bux.

Later, I am going through my house to gather things,  photograph them and post them on craigslist.  In a couple of weeks I may be groveling to get my old part-time job back. (Because who doesn’t want to work MORE when they feel like shit?! )

This is all because as wonderful as some of the state funding for this disease is, it also sort of sucks enormous balls.  And that’s really putting it in a very lady-like, delicate, manner compared to how I actually feel.

As, “good Americans” my Husband and I always lived by that, “work hard and you’ll live well” mentality. We couldn’t afford everything we wanted to have and enjoy in life…so we took on more work to make more money. SILLY FUCKING US.  Because we certainly don’t have everything we want….we can’t take vacations…this year we probably can’t have Christmas…and more likely than not, we won’t be able to afford the medicine that the medical community tells us will, “keep you alive”.  My Husband makes “too much”. Well that’s just dandy.  The real kicker is the people telling me what a “trigger” and “killer” stress is for my illness. “don’t panic” they say.  Well…you tell me how serene you would feel.  I can’t get a fucking straight answer from anyone and the “don’t worry” ‘s are wearing my spirit pretty thin.  ALSO!?  I read a post that one meds side effect is fat deposits in the arms.  Like, seriously. Go fuck yourself, hiv.  If you make my arms any fatter…..I really, I can’t even with that one.

So I emailed my case worker this morning and told him to get crackin on my “freebie” options for going back to school and getting out of loan re-payments.  I need to write a letter to my gym when I’m done writing this.  And I want a handicapped parking sticker.  I’m not fucking around.  Get me a sticker or feel my wrath.  I’m over it. I wanna park up front. 

I told four more friends this weekend.  That sounds like a lot.  But it’s not…and you will never know how little it is until you’re in my shoes.  Imagine yourself in a room of 75 people you know very well.  Remember you are HIV positive and other than the occasional 10 minutes of finding something funny on TV to distract you, you don’t really think about much else.  Now, someone you love asks you how you are and “what’s new with you”.  WHAT’S NEW WITH ME!?Oh nothing!  My husband and I have a chronic, life-threatening illness that ruined our hopes and dreams in about 15 seconds, has destroyed our families and alienated us from our friends.  Oh, AND we painted our living room.  What’s new with you?!  Can ya see how it’s just a tad rough?

Disclosure is a hot topic among those closest to me right now.  I know the stigmas.  I know I am prone to the dramatic and the over share.  I also know what I have and hate the having of it more than you could ever hate it for me.  I appreciate concern. But perhaps some of the best advice I can give to a fellow survivor (because everyday we survive) and their friends and family….is that the only right way to disclose (or not) is my way. The fact is-  I am not legally obligated to tell or not tell.  I have told past partners who I felt were at risk. They tested negative, thank God.  And seeing as I do not plan to hold a blood brothers ceremony any time soon, nor do I foresee myself having sex EVER again, let alone with someone who isn’t my Husband…you’re all safe. 

If you’ll excuse me I’m going to go have a glass of wine -in the middle of the day-  and cook some healthy Ellie Krieger recipes and take my vitamins.  Tonight I’ll watch the Gabrielle Giffords interview and feel like an asshole for complaining about anything but until then I’m going to go listen to some George Michael and chop vegetables like an angry bitch.