I was also incredibly tired, which was rare for me.
At the time, I was training for a duathlon.
Ive always been an avid athlete, and running any distance had become difficult.
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It didnt make sense.
I was able to finish my race, but I didnt feel better.
One day in May, a coworker said, Do you know how yellow you look?
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I left work to go see my GP that same day.
Some of my symptoms suggested hepatitis, but the viral tests came back negative.
I saw a gastroenterologist, who tested for mono and autoimmune markers.
He said I had liver damage characteristic of a drug overdose!
It was difficult to even form words.
A liver biopsy confirmed autoimmune hepatitis.
As sick as I was, Id caught it early.
The hardest thing is that this is something I will deal with for the rest of my life.
I hope to get to the point where I can go years without taking medication.
Today I feel very good, despite some sick days.
But I refuse to stop living.
Part of that is raising awarenessmy disease does not get much attention.
© Tré Inc. 2014
I didntfeelsick, though.
I was always tired, but attributed that to my job.
the opthalmologist Id been referred to sent me to the ER for an MRI.
The doctors there said it could be Lyme disease, a virus orworst caseMS.
But I also found the National MS Society and reached out.
I decided to throw myself into fundraising to help find a curemanaging my disease in the meantime.
In the beginning, that meant weekly injections that made me feel like I had the flu.
My stomach, thighs and lower back were covered in bruises.
I was single and remember thinking, how am I ever going to meet someone?
I dated a bunch of guys, and would often spill my illness too soon.
One guy broke up with me after I told him.
Ironically, I later found out he had Crohns.
I finally met my husband when I was 27.
We were playing cards in my apartment and I said, I have MS.
He said, No big deal.
We got married 4 years later.
He even helps me with my injections when Ive needed them.
Today Im on a new medication that I can get pregnant on.
That was another major concern: I want children.
But can I have them?
Ive met many young women with MSincluding one who just had a baby, so I am hopeful.
I still experience numbness and tinglinga lot of that comes and goes.
One of the scarier symptoms is dizzinessI cant stand up when that happens.
Those are the hardest days, when I am reminded I have a chronic disease.
So I deal with that anxiety by raising money to find a treatment.
Last October, I held a benefit that raised $10,000 for the MS Society and another MS nonprofit.
Everyone from my Facebook group showed up.
We danced and sang and demonstrated that just because we have MS doesnt mean we cant still have fun.
I was 27 and the first in my family to go to college, let alone medical school.
Then I passed outthankfully, before surgery started.
It turned out to be pericarditis, inflammation of the heart sac.
I spent that night in the hospital, and noticed that Id also developed a skin rash.
My cardiologist was focused on my heart.
Surgeons cant pass out.
I was still tired, but thought the worst was behind me.
Then in December 2013, I developed another rash on my legs and arms.
The ER doctor prescribed a steroid cream and sent me home.
I was back in the ER that night.
It had probably been autoimmune all along.
They treated me with the steroid prednisone, plus a potent immunosuppressant.
They can alleviate symptoms, but also trigger episodes.
I finally have my rash under control, but am now battling my biggest problem: immense fatigue.
Compared to six months ago, I feel blessedbut Im only 60 percent of the old Anne Marie.
Depression goes hand in hand with these diseases.
You wake up one day and you feel like your life has been ripped away from you.
So you fight, and feel better, then theres a flare up.
But I wont give up.
At this stage, where we know so little, awareness and compassion are key.
I initially started having symptoms in October 1998, as an undergrad at Michigan State.
I was so tired that it was hard to get out of bed.
I asked my doctor if I should take an energy pill.
He said, No!
Youre probably partying too hard.
He wasnt worried, so I wasnt either.
No one else noticed it but me.
It happened a few other times, but I just ignored it.
I moved home to Chicago in August.
I couldnt chew my food.
My doctor referred me to a neurologistwho I was finally able to see two months later.
She said I had to take medication.
I asked, For how long?
When she said, For the rest of your life, I burst into tears.
My disease progressed in spite of the medicine, and I found a new neurologist who suggested a thymectomy.
I went back to work six weeks laterI had bills to pay!
But I felt horrible.
I was so tired that I would wake up from a nap still l exhausted.
At its worst, MG can affect the respiratory system, which can be fatal.
As I shared my story with other women, I met so many who also had autoimmune diseases.
Regardless of our diagnoses, our journeys were so similar.
As Ive become more active raising awareness of this issue, I feel theres a lot to be done.
I really believe that autoimmune diseases should be included on every medical intake questionnaire.
On that note, Id like for autoimmune diseases to be researched collectively instead of individually.
Theres power in numbers.
I was thrilleduntil I got incredibly sick.
I thought it was morning sickness.
When I miscarried at 12 weeks, I was devastated.
But at least my symptoms would disappear, I thought.
Over the next three years, I saw 10 doctors.
Truthfully Iwasdepressedas a result of feeling so awful.
A gastroenterologist finally discovered that my gallbladder was inflamed and suggested removing itwe did it, but little changed.
Now, in addition to the severe fatigue and joint pains, my hair was falling out.
So I kept going to new doctors.
Id bring my blood work in and if a doctor said, Youre fine!
Id say, Youre fired!
Finally, one of them took me seriously.
It sounds crazy, but after so many doctors telling me I was fine, the diagnosis was validating.
Now I knew what I had to fight.
Hashimotos is when your immune system attacks your thyroid, making it underactive.
That didnt show up in my blood work for two years.
I love food and cooking, so I started posting a recipe a day on my blog.
Soon, hundreds of women were sharing similar stories with me.
After that first year of posting recipes, I signed a cookbook deal.
For me, the key to fighting my disease has been a combination of diet, drugs and community.
Photo Credit: Courtesy of Subjects
