Timeline of an Autoimmune Disease

by Jeni Anderson in , ,


I was 18 the first time I knew something was wrong. I burned my hand with a cigarette, but the burn wouldn’t heal. Weeks went by and I tried bandanges and ointments and lotions and lathers. I wore gloves and started barely washing my hands to avoid irritating the wound. But it grew and spread.

Red, scaly, itchy. Sometimes there was puss or clear fluid leaking. Then the spots started appearing in other places. My other hand. The bottoms of my feet. I knew it wasn’t a burn, but I avoided it. My mom made me go to the doctor. It was psoriasis, and dishydrotic eczema, and I was prescribed steroid creams and ointments and Prednisone and even a UV light treatment that at the time, in the late 90’s, was considered cutting edge.

My then boyfriend, now husband, would help me into bed, remembering to put ointment and socks on my feet, knowing if I didn’t do it I probably wouldn’t be able to walk the next day. I tried to hide it, but I couldn’t hide it. Some days it was all I could think about. My life revolved around finding a way to make my skin better.

 Obviously the beer wasn’t helping matters. But check out my hands. Not nearly at their worst, but not good. Sometime in 2005.

Obviously the beer wasn’t helping matters. But check out my hands. Not nearly at their worst, but not good. Sometime in 2005.

Then, when I was 20, living in Boulder, just barely managing my skin condition and seeing doctor after doctor, I started developing pain and sensitivity to light in my right eye. I ignored it, focusing on school and finals, and eventually it became unbearable. I drove home unsteadily, swerving down I-25, for the break between semesters, one eye closed the whole time.

By the time I got to my parent’s house I was in exruciating pain. I barricaded myself in my mom’s bedroom in total darkness, convinced I was going to have to have an eye transplant. I couldn’t see. I couldn’t move my eyes. Light felt like a dagger directly to the cornea.

I had Iritis, or inflammation of my iris. It began recurring almost yearly around the holidays, triggered by stress and who knows what else. I endured more tests.

My opthamologist tested me for the gene expressions HLA-B27. Positive. What did it mean? No one could really say. Just use this steroid drop, and this pressure drop, and it’ll get better. Just manage it. I became a pro. I moved from doctor to doctor, but I knew what they were all going to say before they even said it. It was always the same.

I managed my skin, and my eyes. In my mid 20’s, I started noticing my toes were swollen and painful. Then my fingers. I’ve always had funny looking hands — double jointed fingers that can do things most fingers can’t. But this was different. This was a new kind of pain. Debilitating, some days I couldn’t use my right index finger at all. I couldn’t open jars, or grab the dumbells tightly at the gym. I ached and cried. I joked that I had the hands of an old woman. But it wasn’t a joke, really.

I was diagnosed with psoriatic arthritis at 26. I was about to get married, I was young, my whole life ahead of me, but I was researching biologic medications and sitting in my rheumatologist’s waiting room for 2 hours at a time because I didn’t have the confidence to tell him to fuck off and find another doctor who would take the time to really listen to my needs. I was miserable. And I was risking permanent joint damage if I didn’t take the drugs they recommended.

 Living in Singapore with psoriatic arthritis in 2008

Living in Singapore with psoriatic arthritis in 2008

So I took them. For the last 12 years I’ve been taking them. I’ve been on 5 different injectable medications, one monthly infusion, steroids, and countless other drugs. I suffered from near liver failure from one of these drugs, the remedy for which was taking an immunosuppressant usually reserved for organ transplant recipients. One drug works for a while, then it stops. And so I go to the next one.

 The dreaded steroid “moon face” in 2014

The dreaded steroid “moon face” in 2014

I’ve had to have cataract surgery due to long -term steroid use, I now joke about my bionic eye. I’ve been on Zoloft because the steriods made me angry and mean and depressed. I’ve cringed at my moon face in the mirror and screamed at the scale when it keeps going up even though I’m throwing everything I have into making it go down. I’ve laid in my bed and cried my eyes out because every single bone in my body aches more times than I can count. I’ve tinkered with my diet nonstop in an effort to find something, anything, that will help reduce the inflammation in my body. I’ve screwed up some pretty major friendships. I’ve spent thousands of dollars.

I’ve become obsessed with myself. With fixing myself.

I’m so informed about what is wrong with me. Yet I understand absolutely nothing about what is wrong with me. And neither it seems, does anybody else.

I’ve gone off all the drugs twice, to give birth to two amazing little girls. I’ve also reluctantly gone back on them as my joints slowly deteriorate, my skin worsens, my eye aches and throbs. I’ve convinced myself I don’t need the drugs. That I can do it without them. Then my body convinces me otherwise.

Late last year I started getting sick in a new way. A lot. I couldn’t eat. And when I could, I couldn’t digest my food properly. I have fevers on an almost nightly basis. All the muscles in my body seize up, and I shiver and lay in bed, unable to move. It’s humiliating, being sick, when it’s Christmas and your daughters want you to play with all of their new toys, and when it’s your birthday and your friends just want to take you out to celebrate. And it’s hard to explain, when in the morning you feel okay, and begin to go through the motions of your day, but by late afternoon all you want to do is go lay down. Like an old woman again. But only 38.

Last week I was diagnosed with yet another autoimmune disease: microscopic colitis. Not ulcerative colitis or Crohns, but with similar symptoms. The path to recovery? More steroids, or maybe another biologic, some immunosuppressive drugs, cut out gluten, dairy, eggs, soy, all spices, all raw vegetables and fruits, eat nothing but rice and chicken and try not to murder everyone that talks to me.

I don’t know yet, exactly how I’ll treat this illness. I know that I have a lot of work to do if I want to feel better. I know it’s not going to be easy, and there are going to be a lot of people around me who tell me the choices I make aren’t the right ones. I know that I’ll probably continue to be a shitty friend and a shitty mom and a shitty writer while the lion’s share of my energy goes toward fighting this thing.

I know one thing for sure, there are a lot of other people out there fighting autoimmune disease and chronic illness. And there are a lot of people doing research on how we can combat these diseases. It feels lonely sometimes, living like this. But I know I’m not alone.

 just tryin' to live my life in 2018

just tryin' to live my life in 2018

 

 


18 for 2018

by Jeni Anderson in


One of my favorite authors and podcasters Gretchen Rubin recently suggested that instead of the typical New Year’s Resolutions, simply coming up with 18 things you’d like to accomplish in 2018. They can be small or large, easy or hard, just as long as they give you some direction as to where you’d like your year to take you.

This was a difficult exercise for me because I tend to make goals and then immediately find reasons why I won't achieve them, but in the spirit of positivity, I gave it a shot. Many of these should be easy to cross off the list, others will be a bit more difficult. I’m publishing these here to give myself some accountability.

  1. Write every day.
  2. Cook two new recipes a month.
  3. Read 40 books.
  4. Start reading a longer chapter book with the girls.
  5. Take my medicine on time every month.
  6. Try a boxing or MMA class.
  7. Plan a European vacation.
  8. Go to a writing group even if it makes me uncomfotable.
  9. Clean out my closet.
  10. Take my daughers to Red Rocks.
  11. Go paddle boarding.
  12. Remodel laundry room.
  13. Yell less.
  14. Make conversation with a stranger even when I am inclined to leave.
  15. Stop stacking and start filing.
  16. Learn two new braiding styles for the girls.
  17. Drink bone broth.
  18. Host a party.

Passing the Time

by Jeni Anderson


There is a quote by Dr. Seuss that goes something like “How did it get so late so soon?”

This morning I logged on to Facebook to see my six year-old staring back at me, but in baby form. She was six months old then, lounging on the couch, looking exactly like she looks now, only completely different. I don’t know what it was about seeing that picture, but in that moment, I felt time shoot through me like a bullet. Only six years ago, yet it might as well be a lifetime.

 Evelyn, 2011

Evelyn, 2011

Look at her there, judging me for putting her in those ridiculous socks, yet completely helpless against my whims. Now she says things like, “Sure, I’ll have the sweet potato casserole, it sounds interesting,” and “That shirt is not going to work with these leggings.”

Things a legit person says. A real person. Not even just kid things, though she says those too. It is amazing to me that this little baby is speaking to me and yelling at me and asking me questions about the phases of the moon and whether or not Santa should try a yoga pose to fit down the chimney more easily.

It’s cliche perhaps, but it is so true. It all just happened in the blink of an eye. Today she’s six, and tomorrow she’ll be 18 and then I’ll be dead. That’s how it feels sometimes, this life, doesn’t it? It’s moving so fast. And everything we do, every decision we agonize over, every tear we shed, all of those will blur together and it will be so late, so soon.

How do we, as parents, even as humans, find a way to capture these moments and really live in them, without just relying on a Facebook algorithm to help us recall? How do we find gratitude in the mundane, joy in our every day? Is it okay if we forget? Am I even really remembering that day, when I put her in those red pants and those socks? Or is the photograph all I have left?

How did it get so late, so soon?

 Evelyn, 2017

Evelyn, 2017