I’m part of a writing group every week. I love my writing group. We meet at my kitchen table, read a poem aloud, then write about whatever comes for 30 minutes, then share. Today, a story about my health came out. And everyone made me promise to post it on Chronic Twenties. So, here it is. No edits, no polish. Just what came flowing out of me.

The needle pierced my skin, and I felt it sinking through my flesh. Biting through the layers of fat along my lower back and deep down, toward the spine. I tried not to flinch, tried to stay still. But my head swam; my body broke out in a cold sweat. “I don’t feel so good” I said hazily to the nurse. And then I puked. All over the floor, splattering as I was laying a good 3.5 feet up on a table, my back bare, draped as if for surgery. The nurses were unfazed, they were used to patients’ bodily fluids. “Sorry.” I was mortified. I rarely threw up, and never in front of people. The doctor seemed annoyed. “We’ll have to stop,” she said, and began drawing the other needles out of my back. I was supposed to be getting six shots of cortisone along my spine, four needles were already in place, but the fifth had sent my blood pressure plummeting, hence the vomit.

I remember the night when I finally understood why people became drug addicts. Sitting in my apartment at night, the pain so pervasive that I wanted to crawl into a cave and hide, if only that would make it lessen. I understood, for the first time in my control freak life, why someone would lose their grip, if not to feel pain. I had been raised on Echinacea and Goldenseal, long before you could find them in your local pharmacy or grocery store. But fearing an unmanaged, uncommon chronic illness, I had turned to Western medicine a few years before for my answers and once you are in, it’s like the mob, you’re family, and the only way out is the grave. So when the miracle cure, for the pain in my back and hips that had plagued me since I was 12, presented itself, there was no question for me, give me the needles. Give me the drugs. I cannot do this anymore.

I went back to the doctor. This time zenned out on Valium. This time there was no twitching, no accidental hitting of the vegus nerve (that’s what a EMT friend of my told me is what probably happened the last time). All 6 needles in, six injections of cortisone, six needles out. With a promise of being pain free for at least 6 months. Pain free? After over a decade, I was going to be pain free? I felt like dancing the jig, clicking my heals in the air, but I had just had 6 very long needles very close to my spine, so I went home to rest instead. Actually, I went home to direct the movers who were moving me out of my apartment into a storage unit. But that is a story for another time. Or perhaps it isn’t. It is all the same story, of Boston ejecting me from its grip, of Western medicine injecting me and then me finally breaking free, in witness protection in Vermont.

They had told me 6 months. 6 months to be free of pain. 5 weeks later, through frustrated tears, I admitted to my soon-to-be step-mom that the pain was back. I had asked for her advice, pre-injections. Saying that I knew it wasn’t a permanent fix, but maybe it would give me the space to make some changes in my life. Knowing her as I do now, 2.5 years later, I’m astonished at how much room she gave me to find my own path, to go on my own journey of healing, rather than beating me over the head saying: Stupid! No! But we didn’t know each other as well then as we do now.

I was still popping handfuls of pills every day, not the herbs and vitamins and probiotics and fish oils that she doles out for me each morning now, no these were straight up pharmaceuticals – designed to make me just better enough to believe they are working, and to keep me just sick enough to keep needing to buy them. Do other people look at their daily dose of meds and feel loathing? I did, three times a day. I hated taking pills, hated putting chemicals into my body, hated that I needed them to get through the day. I was 25 and was supposed to be invincible. Isn’t’ that how the story is supposed to go? I was overweight, under nourished, and miserable. And the entire system was created to keep me that way, while selling me diet pills and McDonald’s and telling me its perfectly ok, not just ok, but normal, to be on anti-depressants (half of adults in America are not on some form of anti-depressant or anti-anxiety medication. 50%!).  But it’s the mob out there, so how is a single girl, far from family, with no community, supposed to stay standing in the raging waters of American culture?

So, I joined witness protection. Or at least that’s how it feels sometimes. Urban Maria with her fabulous shoe collection became a hermit in the sticks of Vermont and is…*gasp!* happy. Pause for shock and awe. My sister asked me a few months ago what I did to lose weight (I’ve lost 35 lbs since leaving the big city) and the only answer I could give her was: I got happy.

And while that is a little tongue in cheek, it’s the truth. Yes, I do yoga most mornings now. Yes, I take my dog for a walk in the woods (a few times a week even a long one) almost every day now. Yes, I pretty much only eat organic and whenever possible local (especially meat). Yes, all these changes are true. But the only purest answer I could give to her question was, I got happy.

So, I’ve totally dropped the ball on keeping up with this blog. It’s been a year and a half since my last post about not wanting to take my meds. Perhaps it is apropos that that was my last post, since it is now a year and a half later, and in a few days I will be celebrating life one year meds free!

Meds free?! you say? But you have a chronic illness, that does’t go away….. That is what I thought until I completely changed my life. Now, what I’m about to say is NOT meant to be medical advice. I’m not trying to tell you to stop your meds. This  just happened to work for me, and I believe that it is possible for other people too… that being said, I’m going to get on with my story.

Let me start by explaining where I was health-wise in the summer of 2009: I was fat. I believe the AMA would even have called me obese.  I was taking a TON of meds (see my last post, linked above), my masto wasn’t under control (I had better days then before I was diagnosed and medicated, but certainly wasn’t living a chronic illness free life), I had acid reflux (better with the barrage of meds but still present), and my body hurt. All the time. Specifically, my lower back and left hip hurt all the time. So much so that walking down the street hurt my back, and I was incapable of falling asleep at night without taking some sort of NASAID (at least 3 200 mg pills if not 4. Some nights I took as many as 8 or 10).

The pain got to the point that I was desperate. I had moments when I could understand why people become drug addicts… anything to stop the pain. So I made an appointment at the pain clinic at the hospital. I got a MRI, x-rays etc. They decided the best course of action was to give me something similar to cortisone shots in my spine and hips. The story of that process is a whole other thing so I’ll leave it this: I got the shots. The pain went away. I went for a 5 mile hike, it was amazing. The shots were supposed to last for 3-6 months. They lasted for 5 weeks.

So, after 5 weeks, when the pain came back, I had a total melt down. I couldn’t go through getting the shots again, especially not to get them every 5 weeks for the rest of my life. And I couldn’t live with the pain anymore. At this point, I was staying with my Dad and Step-mom and she is a chiropractor and Feldenkrais practitioner. She is also a strong believer in alternative medicine, and actually hates western medicine. So we started talking about my alternative options.

The story of everything that has happened between that conversation and where I am now is for another day and probably many posts. But I will leave you with this: today I am meds free, I have NO masto symptoms, I only get acid reflux on a rare occasion and I know what causes it, I am a healthy weight (I never dieted) and I am mostly pain free.

The main things I attribute this miraculous change in circumstance to are: a complete change in lifestyle, a change of diet, and acupuncture. There have been many other alternative healings that have helped pave the way, but those are the main ones. I will explain more in near future posts. Promise

There I said it. I don’t want to take them. Not because of any side effects or anything like that. But just because I don’t want to. Every time I look down at my handful of pills (at night I swallow around 10 pills in a myriad of colors, shapes and sizes) I feel like throwing them at the wall. Because that isn’t my life. I’m not a pill taker. I’m not sick. I’m in my 20s. I’m healthy and happy and carefree.

Only. I’m not. Yes, I’m in my 20s. But I’m not healthy. And when I don’t take my meds I’m usually not that happy and definitely not carefree. And I do take pills. Lots of pills.

S and I have talked about this a lot over the past year of our friendship–how there is a psychological block or disconnect–that maybe, just maybe, this time we won’t need our meds. That today our bodies will remember they are young and virile. That if we ignore our symptoms, pretend they doesn’t exits, that they will cease to. Mind over matter. Right?

Unfortunately, hell hath no fury like a body deprived of it’s meds.

And so, as I sit here, my stomach roiling in acid, my bones feeling as if they are going to implode and my brain foggy like London, I tell myself that today I’ll remember to take my pills. Today I’ll pour the Gastrocrom into a glass of water and drink it all. And in a few days I’ll be feeling better.

That is if I don’t throw them at the wall first.

Hi,

M here. I just wanted to give you all a brief intro to this blog and what it is all about. S   and I are both in our twenties and we both have chronic illnesses, albeit different ones.   S has rheumatoid arthritis (RA) and I have indolent systemic mastocytosis (or masto for short). Check out the About page to learn more about each of us and all about our conditions.

S and I have been friends for a while. It wasn’t until recently that we discovered that we have this shared “issue.” And like sunlight breaking through the clouds (I love cliches), I suddenly had a friend who understood me–someone who got a part of me that no one else, not my parents, not even my best friend and roommate A, could possibly understand. Because, unless you have a chronic condition you can’t know what it is like. And unless you are twenty and have one, there is no way you can understand the physical and psychological pressure and changes it imposes on you.

Now, this isn’t going to be a woe is us blog. Quite the opposite. We decided to join forces and blog about our experiences of being in our twenties and having chronic conditions both as a way to document our lives and to reach out to other twenty-somethings (or teens, or thirty-somethings, or whomever). Both S and I are great advocates of social media and its power to transform the world we live in, and so we are embarking on a journey to do just that, to span boundaries of space and time, to use technology to capture and share our unique experiences, so that our stories can transcend our lives and touch other people.

We hope that other twenty-somethings with chronic conditions will find this blog and identify with what we are saying. We hope that they will reach out to us–that we will find community with each other. But if none of that happens, at the very least, we hope that writing this blog will help us deal, day-by-day, with the struggles of being twenty-something and having a chronic illness.

Photo Credit: Abel Baria