The Powerful Delicate/Polymyositis

Hello, my name is Samantha. I have a rare autoimmune disease called polymyositis. I admit, for too long, I was much too prideful to yell to the world just how much I need help, and how much pain I endure. Until one day, GOD rose over my chest and said, Sit Down...Be Humble!!!!!

As uncomfortable as it is asking for help to this magnitude, I find the thought of not asking, and dying, much worse. I am here to Save My Life! Everything you give will support my ability to recover, heal, maintain and build a stronger support system.

Current Needs
Treatment, Travel & Stay - John Hopkins
Acute In-patient Physical Therapy - 5 weeks
Home Physical Therapy - ongoing
Speech Therapy - ongoing
Myofacial Massage Treatments - ongoing
Trained Service Dog
Home Care Giver - additional support
Standing frame
Cybex Kinetron Stepper
Outside Wheelchair Ramp
Flooring Repaired
Bathroom compliant
Bed rails

Polymyositis is defined as a disease caused by inflammation of the muscles. This occurs when white blood cells, the immune cells of inflammation, begin to invade the muscle tissue. The muscles most severely affected are typically those closest to the trunk or torso. This results in weakness that can be severe. (JHU) Easy translation is that I lose the ability to use my arms and legs.

This disease first struck me down in 2013. Stress and Exposure were the culprits that are pinpointed for the reasons my immune system turned havoc on my muscles. Told that I was dying and would never walk again, I clinched tighter onto my Faith and recovered my life, walking and living independently. But, life changes, and with this disease whether you are doing well or not, you MUST have good support to stay alive. Everyone needs somebody! This disease only has two triggers - stress and fatigue. Either one can set off a host of known and/or new health issues. Nearly 70% presented cases of polymyositis present with lupus, simultaneously. As well, it attracts the development of other autoimmune diseases because of it’s nature and drug protocol. Treated much like lupus coupled with rheumatoid arthritis and multiple sclerosis all in one, our medication protocol is not selective. Utilizing weekly chemo therapy to suppress my immune system, paired with daily high dose steroids to control inflammation are just a dose of my weekly protocol poisoning my body another way. This disease is also a vein and lung disease. Prednisone annihilates the veins. As it did mine which caused me to have surgery for port installation in my chest and neck to stay alive. This allows access for me to receive medications in an intravenous manner. Yes, it sucks having a bulging object protrude from my chest

Unfortunately, nearly half of those diagnosed with Polymyositis who lost their life due to complications passed from aspiration pneumonia, as I am currently battling since December 2017. My throat muscles weakened so horribly that it is easier to pull food and water into my lungs than into my esophagus. I currently endure several respiratory treatments and cystic chest compressions throughout the day to rid of the pneumonia that infiltrated my lungs. My difficulty to force phlegm out because my muscles are so weak is the biggest issue. I am not able to sneeze, blow my nose, nor cough properly. Producing the pressure it takes to do either are difficult for my recovering lungs. I work hard, though. So, I know GOD carries me through this because ‘this too shall pass’. Never have I ever had to fight for my life harder than right now. No matter how ill polymyositis makes me, pneumonia is far more difficult for me to fight. My disease complicates it so terribly because it also causes interstitial lung disease, while sitting in a body with adult bones, but, 6 yr old muscle strength. How to recover, but to grab GOD’s hand while I ‘Footprint’ to give my best fight. I am so grateful that the treatments and therapies are working to help clear my lungs, despite how rigorous they feel!

Indeed, I have recovered from the ‘no comeback zone’ 3x’s. This time, I’d love to recover with the support needed to fight relapsing, which has been an enormous challenge. Possessing the proper equipment and having the correct therapies can make this disease manageable for me!

So I ask to please help. Anything helps even the smallest amount and it all adds up. If you are unable to donate, could you please take a second and share this on your Facebook. I know that I am already blessed and grateful to see another day. Please lend a hand in reading about this debilitating disease to educate yourself to our challenges, so you can embrace us with love and care.
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Samantha Anna Henry
Newark, NJ

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