Choices

Choices

by guest author, Pat

My name is Pat, I am a 56 year old mother of two, grandmother of 4, and the wife of the love of my life! I am blessed; nothing can take that away! I like to crochet….but in January of 2014 I started having a lot of pain in my hands and fingers; the dreaded arthritis, or so I thought. In June, 2014 I started feeling awful! Flu like symptoms…went to the doctor and since I live in North Carolina…she went ahead and put me on antibiotics and tested me for Lyme Disease. About seven days later I was not feeling any better, I was achy all over and was so tired; I went back to the doctor and she ran some blood tests, more antibiotics….two days later I woke up in such pain I could not get out of bed. I couldn’t move. I HURT all over. I called my doctor, she wanted me to go to the ER, but I could not move and my husband was at work.  She pulled up the results of my blood tests, told me she was going to call me in a Pat at the Annual Patient Conferenceprescription for prednisone and was referring me to a Rheumatologist…..and that was the start of my journey. That Rheumatologist ran all sorts of tests and a chest X-ray, where he saw damage to my lungs and heard the crackling…he told me I could have lung cancer. My husband was scared to death and I was in shock.  He referred me to a Pulmonologist…more tests, breathing tests and MRI, CT scan…that Pulmonologist said NO, I did not have lung cancer..but I DID have Pulmonary Fibrosis and Polymyositis… he explained that Polymyositis was rare and I would be better off getting my treatment at a teaching hospital. He referred me to a Pulmonologist and a Rheumatologist at UNC Hospital. From everything I have read, I was extremely lucky! My diagnosis only took about 8 weeks, and I learned that my official diagnosis was Polymyositis, Interstitial Lung Disease, and AntiSynthetase Syndrome Anti-Jo 1.

SO the Googling began, and the more frightened I became! Thank goodness that I found the Myositis Support and Understanding website! A very nice lady that also has PM, happened to live in my area and met me for coffee.  She was diagnosed about 3 years prior.

It has been a rocky road, but I made a choice when this whole thing started..and that was I would ALWAYS keep a positive attitude.  Negativity only brings you down and can be so destructive! Especially for people with chronic illnesses.  Did my life change? Oh yes! In April, 2015 I was too weak and sick to keep working. I finally gave up a job that I loved. Now I know it was a good decision and I probably should have done it much sooner!   A plethora of treatments, Rituxan infusions…allergic reaction and taken to the ER.  I am STILL on prednisone..but I am tapering, also on Cellcept, Tacrolimus, and IVIG infusions. My numbers are good…but I still feel bad. And I don’t get it when they say this is an invisible disease….I think mine is very visible with all the weight I have gained from the prednisone!! My face stays swollen,  I am very short of breath with any exertion at all, and walking is sometimes a struggle….but I am HERE…and I have learned so much!!  I I KNOW the value of the people in my life. I can still be useful; even if it is calling somebody on the phone or posting something on Facebook to  encourage them!! Everybody is going through something! Good days and bad days..but doesn’t everybody have those?  I choose to be happy and live my life Day-by-Day, the Myositis Way!

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