CFIDS & HIV/AIDS; Makeup or You Look Sick

When I describe my illness as an "immune deficiency" people sometimes think I have HIV/AIDS. I understand why that confusion happens. But I've never been able to explain it, because I don't have HIV so I can't speak to what it's like.

I cried when I watched HBO's "The Normal Heart" back in May. The story is about HIV/AIDS in the 80's, but it felt like my story. Some of the symptoms are the same, but it was more than that. Their struggle to be recognized is mine. Their fight to get real research done is mine. Much like HIV/AIDS then, CFIDS is still--now--ignored by much of the medical community. The funding toward research is a joke. And many people do not take the disease or patients seriously. By the end of the movie I was enraged thinking of those similarities. Am I three decades away from seeing a movie about the journey of CFIDS sufferers?

Through my sad and angry tears, I was able to choke out, "It's not fair! They get to die at least; we have to live like this forever." I said that to Kevin privately and it wasn't a statement I thought I'd share widely. I don't mean to trivialize something so painful and shattering as AIDS. However, the sad truth is that I, along with millions of other chronically--but not terminally--ill people have learned one of life's deepest secrets. It is this: There are things worse than death. Death can be a reprieve from horrific, endless, incurable pain. Some diseases have the ability to strip every bit of "quality of life" away from a person, but leave them aware of being alive without really living. We fight and hope and pray and wish for cures. We try every experimental solution. We don't want to die; we want to actually live. But we know that if given a guarantee of life staying this way until an old age death or dying young from it, we wouldn't choose decades like this. Death isn't scary, living like this forever is. 

So why did I decide to tell you about that "it's not fair" statement, the one that I was so sure I wouldn't share publicly? I came across a few quotes from medical professionals qualified to compare HIV/AIDS, and just like that my feelings were validated...

"My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."

Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

"[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades."

Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University

http://cfsresearchcenter.org/index.php?option=com_k2&view=item&id=70:about-cfs&Itemid=721

Crazy, right? So yeah, it's kinda a big deal. It's pretty serious. Let's move on to Chronic Illness Cat and one of the classic spoonie-life struggles.

This is what some days look like:

But, why? Why does my face look like this? Why do I have black eyes? Why do I have a rash? Why is one eyes partially swollen shut? Whyyyyyyyyyyy?

(I woke up like this.....lol, Queen Bey.)

This is what I do to hide it, if I have the energy or give a damn, and it does result in the inevitable "why are you wearing so much make up?":

(You can still see the tired, but at least it's a little disguised.)

And this is humiliating and infuriating:

Oh btw...

The idea and motivation [to get over myself] to use a wheelchair came from this wonderful article: http://m.huffpost.com/us/entry/5548406

What Does an Invisible Illness Look Like?

Whether it's a day when I look "normal" or a day when I have luggage-sized bags under my eyes or a day when I cake on the makeup to be presentable...

All of those days, I am what a person with an invisible illness looks like. 

Tired smile & too much eye make-up, trying to hide behind it. 

Forever tired eyes....

^do a couple of hours of yardwork and this is what happens. Everytime. That's what I get for trying to, ya know, do shit. The under eye bags look like black eyes.

Chronic illness cat tells my story for me, so I don't have to type as much. It's quite convenient. So here's another tidbit of my life courtesy of CIC and photo-blogging.

The struggle is real.

Okay, that's all for now. I like the photo-storytelling. It's very convenient. I know words can be powerful to share my story, but they do say a picture is worth a thousand words so I guess I just said a lot more than normal. How many pictures did I put in? Okay multiple that by 1,000.

So to recap, stop judging books by their cover and people by their outsides.

MUST Read & Watch: Robin Roberts' Arthur Ashe Courage Award

"Make your mess your message."
"When fear knocks, let faith answer the door."

When I was in the height of my playing days, I was inspired by Briana Scurry more than anyone else. I trained nonstop and planned to play Division 1 college soccer, then professional. If there wasn't a league, I fully intended on being a part of forming that. I was going to do it. It took 5 knee surgeries in my high school years to put the brakes on those plans. I'm stubborn, if nothing else. Michelle Akers took over as my hero; another female soccer superstar, only one with extreme health problems.

A lot has happened in my life in the last decade since I graduated from high school. Regretfully, knee surgeries are looking like a cake walk in comparison to the health struggles I now face. I have adjusted to life as a dedicated sports fan, as well as one can. I coached, until my health made me stop. I played in adult leagues, until my health made me stop. My now-husband was the Sports Editor of the newspaper that I was the Editor-in-Chief of in college. Sports will forever be a huge focus in my life. My sorrow is that struggle after struggle, they keep being taken away from me, to the point that I am now just another fan on the couch.

I do vote for the ESPYs, and watch the show, despite arguing with most of the awards and feeling that my fellow fans are mostly idiots if they vote the way they do. Still, how can I not vote and watch the spectacle? Last year I vividly remember the bonding experience of voting with my dad, who was much too busy to watch the amount of sports programs I did. So I showed him the video clips of each category and we voted together.

This year I voted alone, occasionally inviting Kevin to give his two cents. Tonight, I went to dinner for 6 at my family's favorite hole-in-the-wall Italian restaurant, as an early birthday dinner for ME (July 23, turning 27). I had time for an hour long nap before the ESPYs, because my medication sucks. I could've been asleep for the night at 8pm. Kevin woke me though, knowing I've been looking forward to the debacle.

Over the past few years, I've taken great joy in seeing how women's sports and specifically women's soccer have become more a part of the ESPYs. However, this year the number one moment for me was watching Robin Roberts receive the Arthur Ashe Courage Award. Roberts has already greatly affected my summer with the Nine for IX ESPN feature series she produced.

Roberts has quickly taken over as my newest inspiration. She was a strong athlete, turned sports journalist, turned major broadcast journalist. Then she became a cancer survivor, and again last year beat death again in the form of MDS (an illness caused by cancer medications -- pay attention to science news: chemo causes nearly as many problems as it solves!). Robin faced both her illnesses with incredible courage, and all under the public eye, in a way that NO ONE has.

I relate so much to her struggles, and the things she said in her acceptance speech. Now, I admit both cancer and MDS are life-threatening; none of my several diagnoses are terminal. However, none of my diagnoses have a cure. So in a way, for me, that balances things out. She could have died from either condition; for me, the fear isn't death, it's life like this.

She fought her battle in the public eye, and showed how vulnerability can equal strength in a unique way. I have always been an open book, except in matters that make me scared or hurt. I'll tell you anything I think or feel or have done, unless it is something that might make me cry. Over the last several years, one of my life/spiritual journeys was finding the courage to be vulnerable. One of the ways I've put that into practice is not being able to cry in front of people.

A much more significant way I've practiced that life lesson is, duh, this very blog. I strive to have the courage and strength to invite any of my readers, friends, and family members into my life. To share my utmost weaknesses and fears, in hopes that it can be a two-way street of you all helping me, and me helping you.

If you didn't watch that video at the top, please go watch it. If you did, watch it again and think of me. Because I watched it real time, sprawled on the couch hugging Blaze with Kevin petting my hair. And God love him, with that animal instinct, when I started crying, Blaze literally hugged me. He wasn't just laying alongside me; he tucked his neck around mine, then licked my tears. He knows things.

I am scared that my life will always be like this. I am scared that I will never get better. I am scared that I will only get worse. I haven't been given much reason from the medical community to think anything different. I am told things like, "make sure you have a good therapist" and I am asked why my insane cocktail of medications does not include an anti-depressant. Some days I feel that I've lost the fight in me, and on those days I just hold on til the next day. I feel I have lost most of my dignity and strength. I do not drive more than a few miles alone; if I have to drive farther than that I have to skip medications. I live like a child, or an elderly person, in that I have to be bathed. I cut 9 inches off of my hair because I can't wash or style it. I don't shower or dress alone. I cannot be left alone for long, because I forget almost everything short-term, like to take my pills in 5 minutes.

Showering with your SO isn't sexy when it is your routine to be bathed. Being brought breakfast or coffee in bed doesn't seem special those things are the only way for me to physically be able to get out of bed. I am a week from turning 27. I should be living vibrantly. I should be in my physical prime. The athlete I once was should've stayed fit into her mid-20s. I should NOT be living this way. Nor should my 29-year old husband. Most people cannot imagine what our life is like, and I wish it on no one. Yet through this, people think I look well. I have to fight and beg and plead to get put on disability. I got kicked off of my insurance because of my health conditions (shouldn't that be illegal?!).

Listening to Robin Roberts' speech it dawned on me that continuing to be even more forthcoming is the only thing to do. Sharing my struggles, my pain, my devastation, is currently what I have to contribute to the world. It's also the only way I can ask or hope that my loved ones will understand.

My Aunt Angie told me she'd put money down on me getting better, and I had to call her out on having little experience with betting since she seems to miss the concept. I told her maybe we'd all be better off if she picked up the money and instead spent time talking to the big guy upstairs.

For the Roberts video alone, I feel this is my most important blog post to date. But in the near future you will (finally) see the post detailing my specific health conditions and what they entail. That will also be hugely important, because most of you don't know my actual conditions. And even those of you that do will, sadly, find a new condition on that list. One that has flipped my world upside down again in the last few days. Thanks for reading, praying, caring, loving, etc... And in the near future, as things take the turn for the worse that seems to be coming, thanks in advance for your love and support. And again, please rewatch that video. I can't without crying.

Looking sick

My diseases all fall under the blanket category of invisible illness. I often am told I "don't look sick" but I am told I look tired. A lot. I've also gained a significant bit of weight. But most people tell me I carry it well or that it's not too noticeable. I, of course, am full of depression and low self-esteem and find this hard to believe. I see the extra pounds on my body and the bags under my eyes.

I wear make up with much more frequency now, because I need that confidence boost of feeling pretty. I NEVER wore make up all through high school and college. I also wear make up because it gives me more motivation to not cry. There's not much more unattractive than teary mascara streaks.

A dear friend sent me a link to this blog today: http://mywifesfightwithbreastcancer.com/. She challenged me not to cry while perusing it, and she successfully predicted I'd fail at that attempt. I give you all the same challenge. I also take with me, at least for right this moment, the inspiration to be even more open and vulnerable via this blog.

Occasionally I post less than beautiful photos on here, on injection day or whatnot. But I still really favor pretty pictures, both here and on Facebook. I'm trying to have the courage, in a multitude of ways, to make my illnesses less invisible. So let's do it.

Sometimes I wear makeup & try to be pretty or sparkly or at least look AWAKE:


Right now I can hardly keep my eyes open. This is legitimately how I look in this moment:
 

And if I TRY to keep my eyes wide open this is how it turns out:


Let's be honest... Those are some serious bags under my eyes. I'm going out to dinner with family. And I will be putting make up on in the car.


But the important message here... That brave man and his tragic loss of his wife. We live in a society that tries to look away from the sad and yucky things. We live in a culture in which curvy women feel the need to defend their bodies. And sick people feel the need to hide it. The message is that vulnerability is BAD. And I'm trying to fight against that.

Maybe letting people in is a good thing. Maybe sharing your weakness can be strength. Maybe. Just maybe.