My Myositis Journey

My name is Elizabeth and I am married to the love of my life and have a beautiful daughter. My life was perfect. I was so blessed and happy with the way things were going for us. I had just quit my job to spend more time with my daughter and on April 2015, my family and me went to this awesome hotel in Imperial Beach (San Diego) and I decided to try tanning for the first time. So I bought tanning oil and laid next to the pool for about 4 hours, enjoying some wine and quality time with the ones I love.

After we left, my chest started itching and I thought I was having an allergic reaction to the tanning oil.  Little did I know it was the beginning of hell!

Anyway, the rash went away on its own and I didn’t pay attention to it anymore. Two days later it came back, stronger, and this time to stay. I went to primary care where they treated me for allergies and the next week we traveled to Arizona with my husband (for work) and the “allergy” didn’t let me fully enjoy our time there. I went from over the counter lotions to cooling aloe gel, etc., and nothing seemed to help. When I came back to San Diego, primary care sent me to the allergy doctor who told me it was skin allergy and treated me without further testing. He said he could not do a skin test because my skin was too sensitive at the moment. We had to go back to Arizona and this time the rash was on my face, upper back, chest, ears, and hands. My cuticles were hard and painful and my arm muscles started to ache; I thought from moving furniture around.

Over the next few days I would wake up every other morning with my eyes swollen, to the point I could not open them. I tried a no sodium diet, yoga, drinking lots of water, and walking but nothing worked. Then my whole face was swollen and I could not recognize myself. I cried because I didn’t know what was wrong with me and I was starting to feel desperate. It was starting to be really difficult to breathe and do normal chores, like mopping, as they would leave me so exhausted and with pain in my back and arms.

When we came back to San Diego I started visiting the ER two to three times a week with difficulty breathing and they would give me something for anaphylactic shock and dismiss me. When I finally had the appointment with the allergy doctor again I was in so much pain in my arms and back, and couldn’t walk more than 10 steps without being exhausted. He said it was nothing bad, that it was just an allergy and it would go away. He made me feel so bad, like I was crazy or making things up, so I stopped seeing that doctor and tried primary care…again!

My voice was getting hoarse and it was really hard to swallow food. I could only eat a few sips of chicken stock and papaya. I was eating very little but somehow felt fatter each day. The next doctor I saw told me I had Cushing’s syndrome and treated me for a week. When that didn’t work and I told him I could not swallow he treated me for Hashimoto’s hypothyroidism.  When tests came back negative he treated me for something else, and when that didn’t work he sent me to internal medicine It was already July, lots of sleepless nights, very painful days, tachycardia, arrhythmias, difficulty walking, trouble standing from a seated position, very swollen, tired, sad, and desperate! The doctor who saw me at internal medicine said he thought it was Lupus, and as crazy as this may sounds, he gave me hope with that because it meant I wasn’t crazy and I wasn’t making things up in my head. He sent me to rheumatology. The rheumy who took my case knew what I had the moment I started talking and I remember his exact words, “You have dermatomyositis,” and I was like dermatowhaat? He didn’t explain much but sent me for lab work and for an EMG. He called me on a Saturday to tell me my labs were back and that I indeed had DM and I had to see him ASAP! I went to his office where he talked a little bit more about DM and the side effects of prednisone. He gave me a prescription and when I got home I obviously Googled the meds and got so mad, and scared. I was mad at the doctor for not telling me about these side effects. He prescribed prednisone, methotrexate, and rituximab, so imagine my face when I looked them up! I decided to seek out natural/alternative/homeopathic therapy.

I found this “awesome doctor” in Tijuana and people from all over the States, and even Canada, were being treated there. Each and every one of them told me wonderful things about him and how he treated them for Lupus, Lyme’s, RA, and even progressive MS, and they were only doing his therapy. This gave me hope. I was the only one in a wheelchair and they all looked so well.

I felt good, until I didn’t. I started having random fevers, and getting even more swollen. At one point I thought my hands were going to explode. I was still in a lot of pain, could not walk at all, the tachycardia came back and one weekend I just couldn’t do it anymore and asked my husband to take me to the ER.

They called my rheumy who told them to send me to a room and start me on prednisone right away.  So I was admitted that Saturday night and spent the rest of the week hospitalized, of course after a lecture about how I should have been more scared of my disease than of the meds. He asked me if I wanted to go ahead with Rituxan and this time I accepted.

I turned 27 years old a few days after being released from the hospital. I started physical therapy in October and finally started lowering my meds and really feeling a difference, and feeling better!

This disease hit me like a truck but has brought my family closer, made me love my husband even more, and made him love me more. It made me work on being a better mother and enjoying the little things. I try to look at the brightside because I could choose to be depressed and hate my life, but ain’t nobody got time for that! Even with myositis my life is awesome. I have an amazing support system (my husband, mother, father, aunt, sisters, brother, and a few friends). Disease or not, life truly is beautiful and I’m not going to tell you I didn’t cry because I did. But I cried and moved on and kept fighting to get better for my daughter, husband, and parents. I can’t even imagine how my parents felt seeing me like this so I owe it to them, too, but also to myself. I want to walk again; to swim, to dance, and I know I will.  If you are scared and angry know that there is a light at the end of tunnel for us, and we may have to face some changes in our lifestyle, but it’s still worth it! Life is beautiful. Enjoy the ride!

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