“You Have Toothpaste In Your Hair”

"You Have Toothpaste In Your Hair"
“You Have Toothpaste In Your Hair”

The past week was hellacious for me. I felt trapped in my own body. I had a severe flare up of the polycystic ovarian syndrome, PCOS. Combined with the daily pain and fatigue of Myasthenia Gravis (MG), this was overwhelming. I tried to keep the pain and fatigue from keeping me down emotionally, which is hard when you’re bedridden for days. And when you have bipolar disorder.

When You’re Fighting Multiple Diseases Simultaneously

It started last Thursday when I got my period. My OBGYN and I have been working on perfecting the combination of medications so that I would not have a period at all. My last period was in August. At first, I told myself, Wow this pain’s not that bad. Not bad compared to previous episodes. But sometime between Friday night and Saturday morning, it became clear that PCOS was not playing. The PCOS and MG tag-teamed me. I’d get up only to be knocked down again.

A Pleasant Surprise

Friday night I struggled to get out of bed to brush my teeth and do the usual bedtime things. Often, I lie there for hours and eventually get up to finish my bedtime routine. (With physical therapy, these nights have become less frequent.) But Friday night, I just couldn’t do it. I woke up Saturday morning realizing that I hadn’t brushed my teeth. Ashamed, I brushed them three times. Then, my 27 year-old niece CJ surprised me. I answered the door looking disheveled in my mismatched pajamas—you know the kind of sweatshirt that looks twenty years old (because it is). While I was grateful to see CJ, I was embarrassed. She embraced me and said, “You have toothpaste in your hair. Did you know that?” I brushed it off by saying that I brushed my teeth three times that morning without explaining why. Sensing my embarrassment, CJ said, “Relax! I’m not Jordan Knight or Joey McIntyre. If Jordan knocked, you would have slammed the door in his face.” She told me she was going to meet her mom (my cousin Ricci) and her little sister at my house because they were going to see Frozen on Ice at the local arena, which is three minutes from my house. When Ate Ricci arrived, CJ told me she’d come back as soon as the show ended.

Not All Alone

CJ’s visit uplifted me. She did not know about my flare up but visited me anyway. Now, I was determined. I was gonna get up and accomplish some of the things on my to-do list. Then, I opened an email from the credit card company saying my payment was past due. I called them and told them that their system says I logged in weeks ago and I have a screenshot of my payment. They didn’t care for logic. Our conversation went around and around. It was like talking to Medicare.

After our conversation, I was defeated. I languished in bed trying to get up. When CJ arrived, she asked if I slept the past few hours. I told her, “No. I just look like it. I got this email from the credit card company saying my payment was past due (even though it wasn’t). I got depressed. Plus I’ve been in a lot of pain.” CJ wasn’t weirded out by my revelation. She stayed with me the rest of the day. We had fun watching TV, eating paninis, and drinking hot cocoa. I felt less alone. This also gave me strength to shower and get dressed. The next day, after spending hours in the shower, I finally washed the toothpaste out of my hair.

A High Stakes Moment

On Tuesday, I went to see my neurologist. Last August, I performed really well (for the first time) on my quarterly Myasthenia Gravis test. Physical therapy helped a lot. Doctor S said if I performed well on my January test I could finally go down to 4 mg of Prednisone (from 5). I have wanted this for so long because I want the 24/7 pain in my fingers and toes, which has dogged me since 2008, to go away. I always said I’d celebrate and do a “4 mg victory dance” if I got there. When I do not perform well on a test, the doctor increases my dose. Obviously, the stakes for Tuesday’s test were high. And now PCOS threatened to undo my progress. I told Dr. S about my PCOS and she understood. The test was hard. Despite that, I did well. Dr. S said I could now go down to 4 mg of steroids! Being in pain, there was no 4 mg dance. It was a quiet victory. But I won this round.

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–Your Stylist, Jessica Gimeno

 

JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

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