Story of a new mother with Polymyositis

Story of a new mother with Polymyositis

Author: Selina Monrreal

It seems as though I unconsciously asked for the good news first.

July 10th of 2009, my life was finally complete.  After the most picture-perfect pregnancy (no pain, no diabetes, no excessive weight gain, no morning sickness, and I love being pregnant), I gave birth to my first baby girl.  The nurse practitioner would tell me time and time again, at every appointment, “You’re a healthy gal having a healthy baby.” Those words still echo in my mind as I think back to what was brewing inside me. At that time, I had it all though.  I was together with the man of my dreams; I had a job, home, and family support.  I felt larger than life.  I felt like I was the most powerful woman in the world.  I had just successfully brought forth a human being into this world for heaven sakes.  How incredible is that?  I was part of a miracle! I was the happiest woman in the world for a week or so.

Then, on July 17th, my neck started aching badly, I had trouble getting up from a lying down position, I found it tough to pick up my baby from her bassinet, I started having trouble dressing myself, holding my head up and lifting my arms up past my shoulders.  Day by day, things would get a little bit worse.  I would ice my neck, but the pain persisted.  The nurse on the phone said it was “leftover” aches from labor and not to worry about it.  The pain graduated to constant pain, all day and night.  Something was wrong.  I would wake up stiff and unable to move.  I felt like my arms were going to break off.  I would have to ask my husband to lift me up and help me turn over. Finally, the pain was too great and the ibuprofen and Vicodin wasn’t working so I made a doctor’s appointment for August 14th.
Now the bad news.

On August 14th of 2009, my life changed only slightly as I really didn’t understand the gravity of the situation.  Why? Well, usually when you go to the doctor and they tell you that you have “something” it’s curable and not permanent. So, when the doctor looked at me and said, “I think you have Polymyalgia Rheumatica.” My train of thought was, “Oh yeah, my grandma has arthritis, that’s it.  Ok.  How do I cure this? Send me to the pharmacy, I’ll get the pills and I’ll go home to my baby now.”

Well, I had some blood drawn that day and I drove home and on my way I called my mom and told her that I had some poly-something and that it was curable so she needn’t worry.  It ONLY required a seemingly excessive steroid treatment for one year and then I’d be normal again.

Then it hit me.  I have something with a real title that requires real meds.  Whoa there.  What?  Saying it out loud made this real.  I cried the rest of the way home.  Not because I understood what it was, but because of the fear of what it could be.
Then the blood work results came in.  My numbers were fine, but the doctor wanted to check one more thing, so I came in again the next day to give more blood, and those results came back with elevated CK.  I came in a third time for more blood work and my CK was elevated even more.  The doctor started calling me at home,  which I thought was nice, but he sounded worried but then again doctors don’t call you at home unless there’s something wrong.  He kept asking me if I felt okay and told me I should drink lots of water because my kidneys would fail if I didn’t. Then the word Polymyositis finally came into the mix, but a muscle biopsy and an EMG would confirm. . . .  .My “mile-a-minute” thoughts at this point were:  “What is happening? I am a new mom, I am strong and I have a baby to care for.  I don’t have time for all of these doctors’ appointments; I am recovering from a c-section.  What? Did someone say biopsy?  Did I mention I have a baby to care for? An EMG? Well, it can’t be any more painful than childbirth.  I’m ready, but why so many tests if this isn’t that big of a deal?”  I guess I was still in a bit of denial, but then again, I was in that post partum pregnancy fog as well.

September 1st is when I had my muscle biopsy and was started on 60mg of Prednisone for a period of 6 weeks.

(Thank you for taking the time to read the first part of my story.  I am so happy for the opportunity to share what has happened and continues to happen to me on a daily basis.  I would love to continue to share my experiences in continued blog posts.  Thanks again for reading.  – Selina Monrreal)



Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support


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