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!