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Life with Dermatomyositis
My Symptoms
In July 2010, my life changed. I begin breaking out in rashes all over my body, joints swelling, and body aching. I was tired all the time. One day waking up with fever like symptoms, stiff and barely able to walk, I went to the doctor. After a series of tests, I was diagnosed with
Undifferentiated Connective Tissue Disorder, an autoimmune disease with overlapping features.
As months passed, I experienced fatigue, chronic pain, shortness of breath, random skin rashes, muscle weakness, body stiffness, sensitivity to sun light, lack of appetite, and extreme weight loss. In denial that anything was wrong (despite these symptoms), I continued to work and attempt to do things I have always done however, my disease progressed and symptoms became worse.
In November 2012, I was diagnosed with Lupus, an autoimmune disease in where the body attacks healthy tissues. During this time, I also developed severe
Raynaud's phenomenon, poor circulation to body extremities resulting in several skin ulcers on my fingers. After multiple changes in medications, several procedures, developing Interstitial lung disease, being hospitalized for pneumonia and the continued progression of my disease, my Rheumatologist decided to place me on medical leave from work in January 2014.
I wasn't responding to traditional treatments for Lupus and decided to seek a second opinion at Johns Hopkins Hospital. In May 2014, I was diagnosed with Dermatomyositis, a rare muscle disease accompanied by skin rashes usually difficult to treat and often misdiagnosed as Lupus.
My Situation
While on medical leave, I was terminated from my job leaving me with no income and an expensive monthly insurance premium. Unable to receive unemployment benefits due to medical restrictions, I quickly found myself in emotional turmoil. I begin a process of accepting my illness and current life situation through my faith, family and friends.
Treatment
Treatment(s) for Dermatomyositis are intense and costly. There are daily oral medications and monthly Intravenous Immunoglobulin (IVIG) medicine which is administered in a hospital setting. My medication protocol requires both.
Healthcare/Insurance
Navigating the health system is very time consuming with endlessly forms to complete, long call waiting times, days of awaiting answers to questions/requests, and at times, receiving disappointing news. I became frustrated with how I would obtain my medical needs. Not meeting the criteria for full Medicaid coverage, unable to sign up for the Affordable Health Care until next enrollment, and with pending disability decision, medical bills begin to accumulate.
What's Next?
I will continue my series of IVIG treatments along with several other procedures at Virginia Commonwealth University Health System and follow - up with
Johns Hopkins Hospital for further evaluation / treatment recommendations.
How Can You Help?
Your generous donation will offset the acquired and ongoing medical expenses. No amount is too small so please help reach our goal. Together we can make it happen!
Thank you for allowing me to share my journey.
My Symptoms
In July 2010, my life changed. I begin breaking out in rashes all over my body, joints swelling, and body aching. I was tired all the time. One day waking up with fever like symptoms, stiff and barely able to walk, I went to the doctor. After a series of tests, I was diagnosed with
Undifferentiated Connective Tissue Disorder, an autoimmune disease with overlapping features.
As months passed, I experienced fatigue, chronic pain, shortness of breath, random skin rashes, muscle weakness, body stiffness, sensitivity to sun light, lack of appetite, and extreme weight loss. In denial that anything was wrong (despite these symptoms), I continued to work and attempt to do things I have always done however, my disease progressed and symptoms became worse.
In November 2012, I was diagnosed with Lupus, an autoimmune disease in where the body attacks healthy tissues. During this time, I also developed severe
Raynaud's phenomenon, poor circulation to body extremities resulting in several skin ulcers on my fingers. After multiple changes in medications, several procedures, developing Interstitial lung disease, being hospitalized for pneumonia and the continued progression of my disease, my Rheumatologist decided to place me on medical leave from work in January 2014.
I wasn't responding to traditional treatments for Lupus and decided to seek a second opinion at Johns Hopkins Hospital. In May 2014, I was diagnosed with Dermatomyositis, a rare muscle disease accompanied by skin rashes usually difficult to treat and often misdiagnosed as Lupus.
My Situation
While on medical leave, I was terminated from my job leaving me with no income and an expensive monthly insurance premium. Unable to receive unemployment benefits due to medical restrictions, I quickly found myself in emotional turmoil. I begin a process of accepting my illness and current life situation through my faith, family and friends.
Treatment
Treatment(s) for Dermatomyositis are intense and costly. There are daily oral medications and monthly Intravenous Immunoglobulin (IVIG) medicine which is administered in a hospital setting. My medication protocol requires both.
Healthcare/Insurance
Navigating the health system is very time consuming with endlessly forms to complete, long call waiting times, days of awaiting answers to questions/requests, and at times, receiving disappointing news. I became frustrated with how I would obtain my medical needs. Not meeting the criteria for full Medicaid coverage, unable to sign up for the Affordable Health Care until next enrollment, and with pending disability decision, medical bills begin to accumulate.
What's Next?
I will continue my series of IVIG treatments along with several other procedures at Virginia Commonwealth University Health System and follow - up with
Johns Hopkins Hospital for further evaluation / treatment recommendations.
How Can You Help?
Your generous donation will offset the acquired and ongoing medical expenses. No amount is too small so please help reach our goal. Together we can make it happen!
Thank you for allowing me to share my journey.
Organizer
Tieshea Moses
Organizer
Ashwoods, VA
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