Think of Laura
Donation protected
Vulnerable is defined in the Webster Dictionary as:
1. Easily hurt or harmed physically, mentally, or emotionally
2. (Of a person) - in need of special care, support or protection because of age, disability, or risk of abuse or neglect.
It’s been difficult to open up regarding my rare disease diagnosis, but after 5 years of battling Dermatomyositis, I’ve finally admitted to myself that it’s not going anywhere. So now my goal is to raise awareness and help find a cure (or relief) for the 1 in 1,000,000 of us rare birds who have it - as well as to help raise funds for the astronomical cost of my current medication.
For those of you who don’t know me, my name is Laura Taylor a.k.a. “LT” (and my very close friends call me “Larry”). Before my diagnosis, I was fun, energetic and adventurous, living the single life, traveling and working as an art director for a fantastic ad agency in Baltimore. On my 39th birthday I woke up with an itchy, painful rash on my neck and chest. Within a month it covered my entire body. At that time I was relocating from Annapolis and buying a house in Ocean Pines, MD. I was able to work remotely, and I wanted to live closer to my family. During that time I also noticed how run-down I felt and how sore my trunk muscles were – I figured it was because of the move. It took a while for my new doctors to see me and diagnose my condition. When I finally met with a dermatologist, she performed the first of many skin biopsies that confirmed my rare disease. She told me that she hadn’t seen a case in 10 years. It was Dermatomyositis - a horrible autoimmune disease that attacks your skin (derma) and muscles (myositis).
Since I was first diagnosed in the fall of 2015, I’ve participated in a number of drug studies/trials with my wonderful team of doctors at Johns Hopkins in Baltimore, MD. I’ve had countless skin and muscle biopsies, nerve tests, MRIs, CT scans, ECGs, ultrasounds, exploratory surgeries, etc. Because this disease often accompanies cancer, I’m constantly being screened, and in the spring of 2016 I had to undergo a hysterectomy. This was especially heartbreaking because I was only 39 and hadn’t been blessed with children of my own. Within that year, I lost my muscle strength and couldn’t even make it up a curb without assistance. I physically could not raise my arms above my head. My sister had to help wash my hair, and my parents were basically taking full time care of their daughter again. I didn’t see the second floor of my home for almost two years. I hated being so dependent and seeing how helpless my loved ones were feeling. Needless to say, I was in a dark place.
Over the past few years, I've been on high-dose steroids (Prednisone) and prescribed other toxic meds that wrecked havoc on my body, including: Methotrexate, Cellcept, Gammaguard injections, Rituximab infusions, Tacrolimus, etc,. I was approved for Intravenous immunoglobulin (IVIg) treatments with a home nurse 5 days a month which helped but it caused severe migraines and nausea. I became violently ill due to a contaminated Heparin flush during one of my treatments - and found out shortly after that the Heparin syringe had been recalled. So, I opted out of home infusions and decided to participate in another blind drug trial.
The only medication that resulted in real improvement was one of my past trial medications; the good news - It was finally approved by the FDA for my disease a few weeks ago. The bad news - When I went to pick up my new meds (which I was so excited about), the pharmacist said “This is going to cost you SIXTEEN THOUSAND DOLLARS for a three month supply”. It was absolutely crushing. I think I’ve cried three times in the past few years and that day I just bawled.
(Because I am now technically “disabled”, I collect social security disability insurance and long term disability insurance through my old ad agency. So, I now have to be on Medicare).
I am working with my Hopkins doctors to contact the Pharmaceutical company for some patient assistance as well as navigating through my Medicare plan options but because of my age and apparently my zip code there's not a lot out there. Long story short (I know, too late)… I absolutely hate to ask for help but I have to swallow my pride. Really, any little amount will help, and if you aren’t able to, I totally understand; I know we’re all going through something. At the least, some of you now know why I’ve been MIA for the past few years.
Live your good days to the fullest, friends!
I wouldn’t be here without the love and support of my amazing twin sister, Lynn and brother-in-law, Sean, and simply The Best parents anyone could ask for, Tom and Marilyn Taylor. I have to also mention my wonderful, extended family, Coast Guard family, my close friends and of course my golden retriever, Murray - he is truly my emotional support dog. Thank you all for keeping me going - I’m forever grateful.
I’ll keep you posted on my progress once I start my first round of meds. I really hope my fellow DM patients are getting the relief they need.
Always forward. Never Back!
God bless you all and thanks for reading my story,
LT
1. Easily hurt or harmed physically, mentally, or emotionally
2. (Of a person) - in need of special care, support or protection because of age, disability, or risk of abuse or neglect.
It’s been difficult to open up regarding my rare disease diagnosis, but after 5 years of battling Dermatomyositis, I’ve finally admitted to myself that it’s not going anywhere. So now my goal is to raise awareness and help find a cure (or relief) for the 1 in 1,000,000 of us rare birds who have it - as well as to help raise funds for the astronomical cost of my current medication.
For those of you who don’t know me, my name is Laura Taylor a.k.a. “LT” (and my very close friends call me “Larry”). Before my diagnosis, I was fun, energetic and adventurous, living the single life, traveling and working as an art director for a fantastic ad agency in Baltimore. On my 39th birthday I woke up with an itchy, painful rash on my neck and chest. Within a month it covered my entire body. At that time I was relocating from Annapolis and buying a house in Ocean Pines, MD. I was able to work remotely, and I wanted to live closer to my family. During that time I also noticed how run-down I felt and how sore my trunk muscles were – I figured it was because of the move. It took a while for my new doctors to see me and diagnose my condition. When I finally met with a dermatologist, she performed the first of many skin biopsies that confirmed my rare disease. She told me that she hadn’t seen a case in 10 years. It was Dermatomyositis - a horrible autoimmune disease that attacks your skin (derma) and muscles (myositis).
Since I was first diagnosed in the fall of 2015, I’ve participated in a number of drug studies/trials with my wonderful team of doctors at Johns Hopkins in Baltimore, MD. I’ve had countless skin and muscle biopsies, nerve tests, MRIs, CT scans, ECGs, ultrasounds, exploratory surgeries, etc. Because this disease often accompanies cancer, I’m constantly being screened, and in the spring of 2016 I had to undergo a hysterectomy. This was especially heartbreaking because I was only 39 and hadn’t been blessed with children of my own. Within that year, I lost my muscle strength and couldn’t even make it up a curb without assistance. I physically could not raise my arms above my head. My sister had to help wash my hair, and my parents were basically taking full time care of their daughter again. I didn’t see the second floor of my home for almost two years. I hated being so dependent and seeing how helpless my loved ones were feeling. Needless to say, I was in a dark place.
Over the past few years, I've been on high-dose steroids (Prednisone) and prescribed other toxic meds that wrecked havoc on my body, including: Methotrexate, Cellcept, Gammaguard injections, Rituximab infusions, Tacrolimus, etc,. I was approved for Intravenous immunoglobulin (IVIg) treatments with a home nurse 5 days a month which helped but it caused severe migraines and nausea. I became violently ill due to a contaminated Heparin flush during one of my treatments - and found out shortly after that the Heparin syringe had been recalled. So, I opted out of home infusions and decided to participate in another blind drug trial.
The only medication that resulted in real improvement was one of my past trial medications; the good news - It was finally approved by the FDA for my disease a few weeks ago. The bad news - When I went to pick up my new meds (which I was so excited about), the pharmacist said “This is going to cost you SIXTEEN THOUSAND DOLLARS for a three month supply”. It was absolutely crushing. I think I’ve cried three times in the past few years and that day I just bawled.
(Because I am now technically “disabled”, I collect social security disability insurance and long term disability insurance through my old ad agency. So, I now have to be on Medicare).
I am working with my Hopkins doctors to contact the Pharmaceutical company for some patient assistance as well as navigating through my Medicare plan options but because of my age and apparently my zip code there's not a lot out there. Long story short (I know, too late)… I absolutely hate to ask for help but I have to swallow my pride. Really, any little amount will help, and if you aren’t able to, I totally understand; I know we’re all going through something. At the least, some of you now know why I’ve been MIA for the past few years.
Live your good days to the fullest, friends!
I wouldn’t be here without the love and support of my amazing twin sister, Lynn and brother-in-law, Sean, and simply The Best parents anyone could ask for, Tom and Marilyn Taylor. I have to also mention my wonderful, extended family, Coast Guard family, my close friends and of course my golden retriever, Murray - he is truly my emotional support dog. Thank you all for keeping me going - I’m forever grateful.
I’ll keep you posted on my progress once I start my first round of meds. I really hope my fellow DM patients are getting the relief they need.
Always forward. Never Back!
God bless you all and thanks for reading my story,
LT
Organizer
Lynn Taylor Martin
Organizer
Berlin, MD