Monday, November 12, 2012


So I’m going to start this off by introducing myself. My name is Hayley Warm and I have recently been diagnosed with Polymyositis. I am 27 years old and my world has just been turned upside-down. I was admitted to Redlands Community Hospital on October 15, 2012. I will remember that day the rest of my life.

I woke up that morning not being able to feel my legs or being able to stand. I spent the night at my sisters and I had to crawl across the hall to the bathroom. I had a high fever and my whole body was completely swollen. My sister had to help sit me on the toilet. I was so weak and I thought my legs were paralyzed, but then I was able to move my toes. Phew! Still, I couldn’t stop crying and I didn’t understand or know why I couldn’t move or feel my legs.

 Ashley, my sister, called Dan, my step-dad, and brother, Brad. They came and picked me up and took me to Urgent Care. From Urgent Care I was rushed to the ER by ambulance where I had a room waiting for me with my own nurse and doctor to figure out what was going on. My blood pressure was 80/37 and whatever they did it wasn’t going up. I was starting to have kidney and liver failure as well. They were taking massive amounts of blood for testing which then put me into an anemic state. The doctor thought I had a reaction to a medicine so they were going to do a procedure that they’ve never done. I was then moved to a room, for this procedure, because only one person does this. After being taken there, a doctor from ICU came down and stopped them before doing so. Dr. Nelson helped save my life and for that I am so grateful! After Dr. Nelson stopped the procedure from being done I was taken to ICU. From there it is a blur of what happened. I remember having at least 5 doctors around me and a nurse trying to put in IV in me. I was so swollen that she couldn’t find a vein and I remember just crying because she was hurting me every time. Finally, Dan made the decision to put a main line through my jugular. The nurse then prepared the room for the doctor. It hurt so bad and he had to sew it in. Usually patients are knocked out for this procedure, but because of the condition I was in they couldn’t wait for that. I remember crying so hard because it hurt so bad and I was so scared at the same time. They used that IV to draw blood and give me my medicine. At the end of everything that was the best solution and made it a whole lot easier for everyone.

6 comments:

  1. Hi Haley,

    I have no words at the moment after reading your first entry about your journey and the diagnosis. What I have taken away from reading it, is that Gods still has work for you to do here. You are brave, and I admire your strength.

    I've know Dan my whole life since I was a baby. I always wished as a child he would become my Dad someday. He's a wonderful person.

    I will look for more writings as you continue to share with us your journey.

    My thoughts and prayers are with you.

    Stay strong..

    Sincerely,
    Janelle

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  2. I'm very glad to have stumbled across your blog. I was diagnosed with PM almost 2 years ago. It helps to connect with others, even if it's just in the online world.

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    1. How long did it take your body to be normal again?

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    2. I'm still not normal...still going through most of the same things you are. I've been on prednisone for a year and a half, at varying doses. I've also tried Imuran and Methotrexate. The methotrexate got my CK down to around 400, but just about killed me. Now my CK is back at 2000. I saw my rheumatologist last week and I'm waiting for his call to see what we do next. It sucks, bad.

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  3. Hi Hayley, I've just discovered your blog after someone pinned it on Pinterest and then added to our Myositis Keep in Touch Group on Facebook. I hope what I'm about to say can be of interest or support. I was diagnosed in 2008 after a very rapid decline such as yours, I'd previously stopped taking my methotrexate because of another issue but my rheumy was unaware that it was holding off my myositis. I spent just over 2 years in hospital, and 1 in rehab (thank goodness I'm in the UK because the whole thing would have cost well over a million dollars), 5 months on life support. Since my diagnosis I have been unable to walk, stand etc, and need a wheelchair and help with pretty much everything. It's scary but you do get through it, I have and now I have a great life despite my limitations. I wish you health and peace of mind...x Alison Griffiths

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    1. Will you email me the links to to Pinterest and FB page with my blog on it please? Hayleyw.pm@gmail.com thank you!

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