Teri’s life with Dermatomyositis; Rare Disease Day

February 28th, 2014 by Carrie, the Just Mildly Medicated gal

I am always amazed with the people Dysautonomia has brought into my life, people I would not have met or had the chance to get to know without having my own illness; amazing people.

Teri is one of those amazing people and like many of us she wears many hats. She is a wife, a mother, a daughter, and even a grammy. She is also an infusion nurse and I am lucky enough to say that she my infusion nurse. Teri also wears the hat of patient, she suffers from a rare disease called Dermatomyosis. Teri is a FIGHTER, she fights everyday for her health and the well-being of others.

I was thrilled when Teri agreed to answer a few questions about her life with dermatomyositis on Just Mildly Medicated for Rare Disease Day. Rare Disease Day is an international movement to bring awareness to those suffering with rare illnesses and to shed light on the diseases.

Huge thanks to Teri, and now some of our questions and answers.

Teri, what is dermatomyositis?

Dermatomyositis, is an inflammatory myopathy that affects the muscles and the blood vessels that supply the muscles.

 

When did you realize something was wrong and that you needed to seek the help from a doctor?

My first symptoms were fever and fatigue which are vague symptoms found in many diseases. I had a difficult time getting diagnosed because my lab work looked okay and the doctors couldn’t seem to look beyond just blood work and the whole time I could feel myself declining, eventually I started having muscle weakness and a muscle biopsy led to my diagnosis in 2011.

 

What symptoms are the most difficult for you to deal with on a regular basis?

I would say my top three are fatigue, weakness and my skin. Fatigue is the worst, no matter how much rest I get it’s a struggle just to make myself move and act like a “normal” person. Muscle weakness is difficult, walking, getting in or out of my car, stairs, even things that should be easy like washing my hair seem like a big accomplishment. With dermatomyositis, unlike other types of myositis I have red open lesions on my skin especially my hands, wrists and chest. This is caused by inflammation of the blood vessels at the surface of the skin That is often the most noticeable to others. There are a lot of people with myositis that have pain, I am so thankful not to put that in my top three. I do have some muscle aches and joint stiffness at times. Swallowing difficulties and shortness of breath are also part of my daily issues.

 

How have you made changes to how you do things to help offset your symptoms?

 I make choices about what is important to me and where I will spend my energy. Before I was “sick” I felt like I had to (and could) do everything. But now I certainly save my spoons for what is most important to me, spending time with my husband, 3 children and granddaughter. I definitely prioritize my time. I try to get plenty of rest, being tired makes everything harder to do. It takes me a lot longer to do things, so planning ahead is very helpful. I am also better about asking for help, which was a very tough thing for me to learn.

 

I know you personally and can say that “you don’t look sick”, when and how do you decide to let people know about your rare illness?

That’s a difficult one because it’s a very thin line between someone understanding and feeling some empathy for your situation and someone feeling sorry for you. I get an extra advantage by being a nurse, when I tell my patients “I understand”, I really do understand. I share with some of my patients some things about my condition especially when it comes to IV treatments. It usually makes them feel at ease that you can have a port a cath and receive IV treatments regularly and still function in daily life. Life isn’t easy and when people have additional factors to deal with its nice to know you are not alone and others do understand. My hope is that I can be strong enough to show others that life keeps going even in the midst of difficulties and it is still worth the fight.

Iv Therapy access

Here is a photo of Teri accessing my port for the very first time. I was so overwhelmed!

 

What are the treatment options for someone with dermatomyositis?

Treatment options for dermatomyositis are anti-inflammatory medications and immune suppressant. During my course of treatment I developed a neutrophil antibody(which means my mixed up immune system thinks my own white blood cells are foreign and attacks them). So, treatment options have become very limited for me because my white blood cell count stays very low. I currently do IV immune globulin infusions every other week and steroid infusions monthly. I also do physical therapy to maintain the strength I have.

 

Do you have a favorite scripture, quote or motto that helps you get through the tough times?

I do. It’s from the song Walk by Faith by Jeremy Camp…”I will walk by faith even when I can not see, because this broken road prepares Your will for me”.

 

How long did it take from when you realized something was wrong to getting a diagnosis?

 It took years. The first time I went to the doctor was in 2003 and multiple doctors, specialist and tests later I was finally diagnosed in 2011. It was the most frustrating part of this journey.

When you received your diagnosis how did you feel?

 I felt relief, maybe I could even say validated. Not that I wanted to have a “diagnosis” especially one with no cure but I had known for years that something was wrong. I was definitely ready to move on to the treatment phase, which has proven to be more difficult than thought.

Thanks for inviting me and helping me be a guest…what a great opportunity to spread awareness.

 

Teri will be participating in the MDA Kansas City Muscle Walk. The Muscular Dystrophy Association funds research as well as providing services for families who suffer from neuromuscular diseases.

If you would like to help in Teri’s goal of raising $500.00 this year please use THIS LINK and on the right click “donate to our team”, the Just Mildly Medicated gal already did ;)

Team K

For more information on the Muscular Dystrophy Association click  MDA

For more information on Rare Disease Day click About Rare Disease Day

 

 

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4 Responses

  1. Lindsay says:

    Great post. It’s nice to meet Teri and learn more about Dermatomyositis, as I have to admit, I had never heard of it. Teri is a fighter and an inspiration. Thanks for sharing!

  2. I didn’t know anything about this disease before now. I hope others who have this can read about your courage and openness about your life. You have my respect and admiration!

  3. Liz Klim says:

    Hi!

    Thank you for sharing Teri’s story online. I was JUST diagnosed this week with Dermatomyositis and although it was a long time coming for the diagnosis I am still finding out about auto immune diseases.

    I saw a lot of doctors and had awful eye swelling along with muscle weakness and heart complications. I’m 36 and also am a cancer survivor living with Meniere’s Disease. It wasn’t an easy road to get here but now that we know I do feel a sense of relief and just like Teri feel validated.

    I would love to connect with her and others living with chronic illness. My family is a huge support to me but it’s always great to know people who have dealt with the same issues.

    Thanks again!

    • Vanessa says:

      I also have dermatomyositis and i was diagnosed when my skin became very red and peeling. I think our maybe progressing because i am having extreme fatigue muscle weakness and increased muscle stiffness. I have been to the doctor and my labs are great but i am hesitant to return to the doctor as i feel i will be dismissed as a lot of doctors are not familiar with it.
      Nessa

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