Sunday, November 25, 2012

The Remission Myth

"Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out."- V.C.

In the complex land of the chronically ill the word "remission" is thrown around a lot like candy shooting out of a pinata. Everyone wants it and you'll fight even your best friend for a  piece. Scrambling around, excited, scared, and hopeful we reach out blindly trying the latest drug, treatment plan or diet. And so we fall to the floor despite our dignity in what becomes another vain attempt to rise up triumphant.  All too often, like the kid at the party who was just too small, or too slow, or too weak, we are left holding a only few blades of grass and our disappointment. No candy. No remission. 

For those of you still unfamiliar with the terms "remission" or "flare," here's a little Chronically Ill Vocab 101 to put things in perspective: 

1. Chronically Ill- you are sick now, have been sick for months and will continue to be sick for the rest of your life. 
2. "Sick"- does NOT mean the flu. It can consist of muscle, joint, skin or internal pain. It can consist of swelling, fatigue, brain fog and many many other things. 
3. Auto-Immune- Your body is attacking itself. It cannot distinguish between healthy cells and normal cells so basically it's just raping them all and wrecking havoc on whatever it feels like. 
4. Flare- When a chronically ill person gets worse. Symptoms are heightened or those that were dormant come back. 
5. Remission- a time period in a chronically ill person's life when he/she is symptom free for a prolonged period of time (technically the person will be symptom free AND medication free- that is the TRUE meaning of remission) 
6. Cure- ha...that's funny. 


I have heard many of my fellow chronically ill blogger and FB friends bring up and talk about remission. For themselves. For me. For others. But the truth is, after MY last flare, I have given up on hoping for remission. I have given up on working towards remission. Remission is a myth.  

Now, for those of you ready to throw your computer across the room and yell at me and tell me that I'm a cold, hopeless bitch...please read on to understand why I feel this way. 

The myth goes like this: 

Disease meets person. 
Disease attacks person. 
Person fights back with a gun.
Person gets tired. 
Disease keeps attacking. 
Person fights back with a sword. 
Disease slows down. 
Person meets Remission and falls in love.
Disease hides in the corner watching the love story.
Person fights back less.
Disease returns with a vengeance and steals Remission.
Person fights with gun and a sword to take back his/her lover.
Disease laughs and runs off with Remission into the sunset. 
Person is left with the scars. 

Now, I know this sounds bleak...BUT this is what the remission myth does to the psyche of the chronically ill said person. 

You see, after my last flare I've had a lot of time to put things into perspective and understand where I went wrong and how I could have let it get so bad. What happened is that I was working so hard to go into remission that I failed to recognize the signs and symptoms of shit hitting the fan. I also failed to enjoy my life because the only thing I cared about was getting better. Making the disease disappear. That, my friends, is no way to live. 

Instead of working towards remission (because I've said it before and I'll say it again, this is NOT cancer. There is no cure. "Remission" is as close as we're going to get.) because we all just assume it's better than where we're at, I am going to enjoy where I'm at as much as I can. Who says remission is going to be better? I'd much rather learn how to live the best life I've been given and know that I lived everyday serving my purpose. Why live for an uncertain future when you can have all the happiness you choose to accept in the present? 

I didn't stop working towards remission because I failed. I have stopped working towards remission because I already have enough scars. I have accepted that this is my life, and dammit, I'm going to make a good one. I still work hard everyday to live as pain free as I can but the future of my pain is not my number one concern, the rest of my life is. 

In the chronically ill world we have replaced the word "cure" with the word "remission" and many of us have suffered for it. We are not going to be survivors because these illnesses are for life. Whether they kill us or not, you don't "survive" Lupus or Rheumatoid Arthritis. You live with it. Until the day you die. We should not hope for an elusive act of magic or divine intervention. Instead we should be certain that we are where we were meant to be and that our lives and our dreams have a purpose. At the end of every day we should only hope that tomorrow we are able to wake up and do it all over again regardless of how many pills/naps/accupunture treatments it takes. 

Sunday, November 18, 2012

Work At Home Woes/Wonders

"Life for both sexes — is arduous, difficult, a perpetual struggle. It calls for gigantic courage and strength. More than anything, perhaps, creatures of illusion as we are, it calls for confidence in oneself. Without self-confidence we are as babes in the cradle." -Virginia Woolf (A Room of One's Own)

Over the last two weeks I have had the priveledge and arduous task of explaining multiple times to multiple people what it is I "do" for a living." I know I have brought this up before, but as I myself try to solidify my work at home career, I am finding it difficult and quite annoying to have to explain what it is that I do from the "comfort" of my home.  

When I tell people that I work from home they want to know what I do there. It is not sufficient enough to say simply "I work from home." People want details, but I feel that one simple label or title won't do all of the things I "do" justice. I am beginning to feel quite isolated on this journey, if only because unlike everyone else's chosen careers, my reasons for choosing this lifestyle cannot be adequately explained in a 2 minute conversation to the barista at Starbucks. 

My isolation deepens when even the websites that are dedicated to supporting individuals who work from home, only cater to one of the following two groups: "work at home MOMS" or "work at home business MEN." It seems that those are the only people for whom it is acceptable to work from home. I am not a mom or a business man. As a young, married, childless, seemingly healthy woman, my "work at home" status is seen as a luxury to most. People's eyes widen and make comments like: "Oh wow, that must be nice. I wish I could do that." or "Oh, do you get to work in your pajamas?" 

The truth is this: Yes, on some days it IS nice to sleep in just a little longer. And YES I do sometimes work in my pajamas. BUT there are also a few other things to be aware of. Things that I myself wasn't even aware of until recently. I do not wish to be envied or judged. I want to be understood and validated. Although I don't get in my car and fight traffic to sit in a cubicle or stand in front of a white board to teach indifferent children, does not mean I have it "easy." 

1. To be a successful work at home individual you MUST have self-discipline. You have to get up every morning and pretend as if you actually do have somewhere to go and "get ready" just like a "normal" person. Whether you go to an office space, a different part of the house, a coffee shop etc. You and only you control what and how much work you get done in a day and that requires discipline. 

2. If you are working from a home office...guess what? You are the IT guy, the HR department, the administrative assistant etc. etc. etc. I learned this the hard way this past week when my internet modem busted and I was...yes...God forbid it...disconnected from the internet! Instead of getting ANY work done, I actually missed an online tutoring session and had to cancel a meeting because I spent all morning on the phone with AT&T. Followed by THREE trips to Target because I bought the wrong piece of equipment the first two times. All this began at 8:15am...I was not reconnected to the land of the living until 12:30pm. At which point I gave up on "working" for the day and cleaned the house instead. So you see, there is actually a great deal of responsibility and a HUGE learning curve that comes with working from home. You have to learn how to do it all yourself. 

3. It is a necessity not a luxury for those of us who suffer from chronic illness or pain to have flexibility in our lives. Working at home provides me with the flexibility I need to address my medical needs and take care of myself the way I need to. Just last week I had to make a trip to the ER because of chronic dizzy spells and shortness of breath. Although I really did not want to spend a whole afternoon and night in the hospital, I knew that I would rather be safe than sorry. So, I packed a backpack with my laptop, my to do list, my pills and my medical records. For the first time ever I felt no guilt about putting myself first because I knew I would have time in the ER waiting room to work on work. I was not letting anyone down, including myself.  

4. I am fully aware that it is not acceptable in most social circles to say "I am a housewife." It IS ok to say "I'm a stay at home mom." But the truth is, I am a housewife and that is part of the work that I do at home. I am proud to be a good housewife (although the feminist 16 year old in me would cringe at the thought). It takes skill, energy and love to make healthy meals my husband and I can enjoy and feel good about. It's important to me to live in a home that is clean and clutter free because it helps me think and be creative. I may not earn a paycheck for doing those things but I am fulfilled and happy and that's worth more than the 401k my 20 something friends stress about. 

5. I have decided that my work at home status allows me to change my job description at my will. Some days I am online tutor. Some days I am a freelance writer. Some days I am a curriculum specialist. Because on any given day I am doing one or even all three of those things. This fact makes me perhaps more talented and interesting than anyone who treks to work every day, drinking the same cup of coffee while listening to the same NPR broadcast willing it to be Friday already. And although I don't have to shower to do any of these things if I don't want to, I still take pride in the work I do and I expect it to be respected. 

I know the general society may never fully accept or understand what I do or why I chose to go this route. Hell, family members are still asking me what I "intend" to do for work. Or what about my "career." I know that I have to ignore their comments and explain that I still have a career and that I am still working, it's just in a different way. It's in a way that makes sense for me and for what has become my "normal." A normal that involves a lot of pills, blood pressure monitoring, a strict diet, time for exercise, meditation, doctor's visits, ER trips and naps in the middle of the day. A lifestyle that is not dictated by a 9 to 5 or 7 to 4 5 day a week job. A lifestyle that allows ME to be in control of my health and my illness and not the other way around. 

Sunday, November 11, 2012

Listmaker, Listmaker Make Me a List

We like lists because we don't want to die. 
Umberto Eco 

The Holidays are almost upon us. Yes, that quickly. Thanksgiving is literally around the corner and I had a mini freak out about it just this past Friday night when Lupe mentioned planning the menu. And I thought “why so early?” Until I realized that it’s two weeks away! So, time to get ready for the hustle and bustle of shopping, cooking, cleaning, baking, rinse and repeat. 

Aside from the regular hub bub and holiday cheer that this season brings this is also the time of year when people who have Type A personalities (Me) and are list makers and even those who aren’t make list after list after list. To do lists. Grocery list. Christmas wish list. Christmas  shopping list. Parties to attend list. Guest list. Priority List. Laundry list after list after list. There is just so much to do and get done. And there is never enough time.

Well, in light of all the good, the bad, the beautiful, bold and ugly that the past couple of years have brought me I have complied several lists to honor all the list making that will go on this season. Read, weep, rejoice and enjoy. And hopefully these lists can give you a moment of Zen in the mist of all the lists of things you think you have to get done. 

I'm the one in red and white..

Top 5 Things I Want to Get Done In Life:
1. Publish my memoir.
2. Have a baby/be someone's mother.
3. Love my husband so much he never has the desire to leave me.
4. See as much of the world as I can.
5. Laugh more. 

Top 5 Worst Medical Procedures/Moments:
1. Enduring a miscarriage- It's awful, terrible, gross, sad, painful and after all is said and done there is no funeral and you never feel any closure. Enough said. 
2. EMG- Electro-Magnetic something or other. This is when they stick you with needles that send electric shocks up your legs, arms and back to determine if you have muscle damage or spinal damage. You have to be in the room alone with the technician, you're naked, the bed is cold and it hurts like hell. 
3. MRI of Brain when you have an excruciating migraine- 2009 I endured something called "reversible cerebral vasoconstriction" (thunderclap headache) because it feels like someone hit you in the back of the head with a 2 by4. It made me break out in a cold sweat, projectile vomit and hate life. Now imagine feeling that while you're in a ginormous white machine that is making LOUD OBNOXIOUS buzzing sounds all around your head. (Yes, like the ones you see on House) 
4. Echo Cardiograms/EKGs- All I have to say is: more people have seen my boobs than I ever cared to. (Lupe is starting to get jealous.)
5. Barium Swallow- This is where you drink nasty, white, powdery chalk like crap so they can determine if your esophagus is damaged...thanks to "heartburn." I gagged about 5 times.

Top 5 Most Enlightening Experiences:
1. 5 Days in ICU- I can get depressed or I can get angry. If I get angry I can advocate for myself. When I advocate for myself I am in control. If I am in control I decide how and when this will end. And it is definitely NOT NOW.
2. Parent or Pregnancy- A few months after my miscarriage I decided that being a parent was more important than getting pregnant. If I am blessed to carry a child I will own that responsibility. If my body can't handle it, I will adopt. I want to be a mother and there is more than one way to do that.
3.Food is Medicine- Meeting with my cardiologist after my ICU stay. He did some funky Eastern medicine test on my body and told me to stop eating gluten, dairy and corn. I cried because it felt like the lights had finally been turned on. My immune system is in my gut, what I was eating was killing me. Time to stop killing myself. 
4. Comforting My Mom- She's always been the strong one. She's always there for everyone with a prayer, a plate of food and a hug. But one night, I was there for her. I was strong for the both of us and all was well. 
5. Every time my body does something I think it can't/won't- It's all those little victories most of us take for granted on an every day basis. For instance, this week while cooking, I realized that I can easily use a hand held can opener...2 years ago...I couldn't. It made me smile. Or when I walk up the stairs and I don't have to catch my breath...sometimes (no joke) I shed a little happy tear for myself because 2 months ago...I couldn't. 

One of my girls :)-Blanca & Me
Top 5 People in My Life:
1. God- and that's between me and Him. 
2. Me- because I'm fabulous.
3. Lupe- without him, I'm sure I'd be dead by now.
4. My Parents- without them I wouldn't have been born. :)
5. My Girls- and by that I mean ALL the strong, empowered, beautiful and inspiring women that keep me going everyday. (Friends and family) 

Top 5 Most Debilitating Symptoms:
1. Fatigue- not your average I don't want to get out of bed this morning fatigue, but more like I ran a marathon while battling pneumonia and then decided to meet with my personal trainer for strength training and now I think I'm dying fatigue. (Yes, this is what it feels like)
2.Heartburn- haha, I know it sounds silly especially when you see all those silly Tums/Nexium/Prilosec commercials. But this heartburn is not that. It's sleeping at a 90 degree angle your whole life because the acid creeps up if you lie flat. It's waking up 3 or 4 times a night hacking up fire burning acid that you feel in your ears. It's throwing up for 2 hours with no relief and having your husband rub your back afterwards cause everything hurts. It's not drinking water because even THAT burns going down. 
3. Raynaud's Phenomenon- This is the symptom that makes my hands turn blue/purple and tingle in the cold and under stress. I can literally do NOTHING when I have an attack. It hurts like hell and I am useless until it subsides. 
4. Joint Pain- And no, I don't mean like "oooh I think it's going to rain cause my knee hurts" pain. More like, can you get the cup off the shelf cause I can't raise my arms above my head. Or please bring me breakfast in bed because I'm not getting out of it today. Some days are easy and I feel nothing. Other days I'm an 80 year old woman.
5. Muscle Soreness/Tenderness- It's similar to what they describe in all those Fibromyalgia commericals...EXCEPT...I don't get to run around on the beach or paint a pretty picture after I pop a pill. Lol It still hurts to be touched on some days and I always feel like I spent hours at the gym lifting weights...sure wish my body LOOKED like I had. :) 

Top 5 Favorite Baked Goods:
1. Cheesecake- going to learn how to make a vegan, gluten-free version so I can still enjoy.
2. Crave's White Chocolate Macademia Nut Cupcake- I will allow myself this guilty pleasure once a year even if it causes indigestion and mucus. 
3. John Ufer's Pumpkin Bread- It is simply homemade goodness.
4. Upside Down Rum Cake- What's better than cake and alcohol?? 
5. Dominican Cake- I never get to eat this unless I'm in FL or NY but it is heavenly. And I can't even tell you what makes it "Dominican" but it just doesn't taste like regular cake. :)

Top 5 Reasons I’m An Artist:
1. To keep from going crazy.
2. Because I have stories to tell and I don't trust anyone else to tell them.
3. To keep from going crazy.
4. It's safer than drugs or alcohol.
5. To keep from going crazy. 

Top 5 Things Chronic Illness Has Taught Me:
1.There is no such thing as "normal."
2. I am and should always be the most important person in my life.
3. My pain is mine and mine alone.
4. None of this is my "fault." 
5. The people that matter are the ones that show they care. 

Top 5 Things I Wish I Could Say to People Who Don’t Understand:(You may get offended)
1. This is NOT cancer. There is NO cure and I don't care if your great Aunt beat cancer two times. I am in pain everyday. I am not a survivor I am an endurer. 
2. I don't look sick? Well, you don't look stupid..and we are. 
3. No, I don't need a full-time job to feel successful because I've already been published multiple times, have touched the lives of thousands of people with my poetry, and have a faemily who loves me. I could die tomorrow and be perfectly fine with it...could YOU? 
4. Don't feel sorry for me because I'm sick. Don't put me on a pedestal because I seem strong. I have good days and bad days. And deep down I am still kind of a bitch.
5. No, I'm not too young to be "this" sick. Diseases don't discriminate...and obviously neither does ignorance. 

Top 5 Happiest Moments/Experiences:
1. Finding out I was pregnant- even if it did end early, the possibility and thought of my body being able to do something THAT miraculous was awesome. 
This why I love him
2. My Wedding Day- I still think he's crazy for agreeing to be with my deteriorating self. 
3. My Proposal- I cried like a baby and it was awesome to see all my close family and friends there to support. 
4. Every time a submission gets accepted for publication- it's like giving birth without all the pain. I know that I am leaving a piece of myself behind...forever. 
5. Feb 2006 after a poetry reading- a young lady came up to me and said: "When I grow up I want to do that. I want to be like you. I want to do what you just did." If I had been hit by a truck that very night I would've been fine with it. I know I have done what I came here to do.

Sunday, November 4, 2012

What You See & What You Get

In NY, being silly..that took a lot out of me
"There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before."
Henry David Thoreau 

"How are you feeling?"

"Good. Well. I'm feeling better."

"Well, you look great!"

And I chuckle. Because I truly do wish that my rosy cheeks, cute hair and fashionable clothes were a true measure of how I am "doing." But the truth is, when you live with an "invisible illness" what you see is not often what you get. What YOU see is a healthy 28 year old female, out with her friends on a friday night forcing a smile and a laugh to try and forget the fact that she forgot to take her blood pressure and if the heart palpitations she's feeling right now mean anything this time. What YOU see is someone who has "recovered" well from her brief stint in the ICU. What YOU see is someone who isn't as sick as she claims to be.

I have friends in the chronic illness/invisible illness/auto-immune disease community that often complain about people telling them that they "don't look sick." There are many websites, blogs, and community boards dedicated just to this idea. But I've actually never heard anyone tell ME that. I get something just as bad: "you look great/you look good." Followed by the awkward laugh or the nervous smile because they genuinely believe they're giving me a compliment. And yet, on the inside I cringe and have learned to smile politely, grit my teeth, and respond honestly: "Thank you, but it's not easy."

I know these words are said with kindness and they are "meant" to be a compliment. But what the non-sick person doesn't get is that with those words you belittle my experience. You negate the pain and the fatigue that I feel on a daily basis. You insinuate with those words that because I "look" healthy I must be fine. And yet, if I were to tell YOU after a heart break that you looked "great," I doubt you would find those words comforting or helpful.  I make the comparison because heart break cannot be seen, only felt, and invisible illnesses are the same.

Over the past week I have been a real social butterfly. I've been dancing, drinking, out to dinners and lunches, poetry readings, the movies and the mall. By all appearances I am "back to normal." I have been asked over half a dozen times how I'm feeling. How's my health? And every time I honestly reply that I am "better." Because by comparison, I am in a better place than I was two months ago. However it is not without its struggles, challenges and work. I work very, very hard to "be better." And I often debate whether or not I should work hard to "look" better or if I should let my illness show.

Should I wear makeup today or not?
Should I take on the challenge of wearing heels or will flats have to do?
Should I flat iron my hair and be tired for two hours or just wash and wear?

I may not have a job and many of you still don't know what it is that I'm "doing" right now. But these questions, these every day processes ARE a full time job. (What to wear because my hands can't grip buttons or zippers today/What to eat because my heartburn is acting up and it burns to drink a glass of water/What to do with my hair because I can't raise my arms above my head for longer than 15sec/What to do to keep from going stir crazy in the house because I'm too dizzy to drive anywhere and I have to avoid sun exposure for fear of developing skin cancer....and on and on)
Cat Scan of brain on honeymoon

The average person takes for granted how easy it is for them to get up in the morning. I debate whether or not to put on makeup because I fear looking "too good" and then everyone will think my illness is a sham. But I also have to remind myself that it's not about them and their opinions. It's about me and I feel good when I wear makeup. Even it does take me twice as long to get ready. I too, despite my illness, want to feel pretty even if everything inside of me doesn't.

The reason I "look good" is because I'm heavily medicated (which comes with its own set of challenges on top of what my disease is already doing to me). And I just spent the only energy I had for the day getting ready to show up and look "this good." So please don't mind me if I don't get up to hug you hello or goodbye. Please don't mind if I just sit here in this booth/chair and smile and laugh because it is all I CAN do.

Staying at home and taking care of me is not as exotic or enticing as people think it is. Please, don't be envious. I'd much rather have the energy and the enthusiasm to get up every day and actually use my degree. I'd much rather put on makeup out of vanity and not necessity. I'd much rather look good AND feel good too. I'd much rather bake, meditate, craft, cook, clean and write only because it's fun and not because it gives me something to do other than worry about relapsing or praying for remission.

I am getting better and I am getting stronger each and every day. I am at a healthier weight than I have ever been. I have a better attitude about life and the future. I see things more clearly and I have a stronger spiritual relationship and connection with God than ever before. This illness and these flares have awakened a newer/better me. And for that, I am thankful. I am forever grateful that I am not a "normal" 28 year old shallow and misguided female. I am glad Scleroderma slapped me in the face and told me to wake the hell up and follow my dreams already. I can't say that I would change that for anything. But I know what it has taken me to get to this place and I need those who want to be a part of my life to know it as well.

And while I appreciate the well-intentioned remarks I ask for one thing in return. Don't ask how I'm doing (with the subtext of bringing up my health) if you're not willing to hear the truth: "I'm better, but it takes a lot of work and it hasn't been easy." And trust me, I'll know you aren't willing to hear the truth because you will get awkward and you will change the topic. And the truth is, I will let you. But the next time you ask, what YOU will get is a fake smile and a lie, because you're simply not ready for anything more.