***Written November 20, 2013***
Hello readers! Hope all of you are well where ever you are in the world. I went to school to be a teacher, even though right now I'm not working as a teacher. I may not always be a teacher, but I will always be a student. You never stop learning new things, and frankly I never want to stop learning new things. I the last 8 weeks, I have learned more than my little brain can hold, but I'm grateful, for every little piece of knowledge and experience that I gain. It means I'm still alive and human...or somewhat. My close friends tease me that I have turned into a vampire, and that is fine. I love humor, and without it I think that I would lose my mind. However, I have to say, if given the choice between the type of vampire that sparkles in the light versus the type that burn and die in the light...go for the sparkle kind; it's so much more fun! See, even sick I still have humor, and I try very hard to keep a good attitude.
This week I have learned many things. I've learned that to my close friends and family I will always be beautiful and loved. I am funny and good spirited and when challenged I will rise and fight. I love a challenge it keeps me on my toes. I've also learned always be prepared and expect the unexpected, you never know who or what lurks around the corner.
Living with SU has taught me all of this and continues to teach me daily. I'm learning my limits and what I can and cannot do, and even though I get knocked down sometimes, I always get up and dust myself off and try again. I'm learning that even with my limitations I can still have some normal stuff in my life. So, I'm still trying to remain active and stay in contact with my friends and family as much as possible. It keeps me centered and keeps me going. One of the hardest parts of living with an allergy to light is not getting depressed and not withdrawing from society and the world. I've always had a close group of friends. I wasn't uber popular growing up. I was a band geek and had band geek friends, my close friends then are still friends now. My close friends from my twenties are still my friends now that I am in my thirties and nearing 40! My family is family and has always been there and God willing will always be near, and a part of my life.
Recently in the last 8 weeks I've also learned that no matter how crappy I feel I must get up, shower and get dressed; even if I'm just sitting around doing nothing. Always at least get your body moving in the morning. You'll feel a whole lot better. I'm also learning how to be physically active and not be a slug. With the fact that I used to be very active, always on the go or heading out to the gym 3-4 days a week, this is a struggle for me. I haven't gained any weight. In fact my clothes fit better now and I've lost 10 pounds, but I've also lost muscle mass and I'm jiggly. I don't like it. So, I find myself trying to walk the basement stairs, or wandering around the house dusting or cleaning. Fortunately, I live in a pretty safe neighborhood and have a big dog that likes to go for walks. I've been trying to walk after dark or play outside with the dogs after dark. Since winter is coming I'm not sure how long that will last.
I'm also learning my limits still. I live day to day and I feel like an experiment. Some days are awesome and I feel almost normal and other days I'm exhausted by noon. On those days I curl up with the puppy dog and we nap. She loves it too because she gets time with her mama. But, beyond the physical limitations, what this has taught me is that I'm loved and it has taught me to give back to others as much a possible. Be kind and don't judge others for you don't know what journey God has given them to travel. So, if you're having a bad day, take a moment and clear your mind and step back and breathe. Sometimes that's all you need.
Next week I'll tell you all how my trip to Detroit went. (*now this week, since Ms. Buffy is a slacker*) Hopefully I'll come home with more answers than questions. I'm having photo patch testing done on Tuesday and Wednesday. They are going to test me for allergies to UVA, UVB and visible light. I will be meeting with Dr. Henry Lim, and I've heard he is wonderful and has a lot of experience with PMLE and SU. Beginning today I'm tapering off all meds so that the test will be accurate. That;s the scary part, but I'm armed with Epi-Pens in the mean time. And saying prayers for safe travel and not complications.
*This was typed in late due to a loss in Buffy's family, she is not really a slacker :)*
Tuesday, November 26, 2013
Thursday, November 14, 2013
Some Resources and Links
I have compiled some resources and links that I have found helpful and I want to share them with you! These will most likely get re-posted again in the future.
Clothing
Rit Sun Guard Wash- www.sunguardprotection.com
Coolibar Clothing UPF- www.coolibar.com
Solumbra UPF Clothing- www.sunprecautions.com
Support
Sun 1 Support Group for Sun Sensitive People- http://sun1support.blogspot.com
Xeroderma Pimentosum Society (XPS) Camp Sundown- www.xps.org
Faith
Living Stones Church- www.livingstones.cc
Other Resources
DermNet NZ- www.dermnetnz.org
Mayo Clinic- www.mayoclinic.com
Henry Ford Health System- www.henryford.com
Clothing
Rit Sun Guard Wash- www.sunguardprotection.com
Coolibar Clothing UPF- www.coolibar.com
Solumbra UPF Clothing- www.sunprecautions.com
Support
Sun 1 Support Group for Sun Sensitive People- http://sun1support.blogspot.com
Xeroderma Pimentosum Society (XPS) Camp Sundown- www.xps.org
Faith
Living Stones Church- www.livingstones.cc
Other Resources
DermNet NZ- www.dermnetnz.org
Mayo Clinic- www.mayoclinic.com
Henry Ford Health System- www.henryford.com
My Story
Some history on my life is needed to give some perspective. Growing
up I wasn't always allergic to light. My condition didn't start until I
was in my mid to late 20's. I was born and raised in Northern Indiana. I
was a typical child, active, creative, and lively. I rode bikes, played
outside, was a Girl Scout, and I loved to swim, play volleyball, and
enjoyed music and art. As a teen I was always either int he pool or
outdoors at marching band practice. I waa medium complected and always
has an olive tone to my skin. As a teen I had acne like most, but that
was my only skin issue. I rarely burned in the sun and if I did I healed
quickly. Basically you could say I was a normal girl who was happy and
healthy, and throughout my college years I lived a normal life too.
In February 1999, I met the man of my dreams and life John, he is wonderful and supportive in all I do. We dated for about 4 and a half years before marrying in 2004. Our wedding was held outside at my parents home, and it was a beautiful ceremony.
The first issues with my skin began in Summer 2002. I began noticing that after being outdoors, in the direct sun, I would end up covered in hives. They were teeny tiny little dots and were so close together they would make my skin look bright red like a sunburn. The hives would only appear on skin that was directly exposed, and itched like nobody's business. After I would get out of the sun they would disappear after a couple of hours. The first couple of times, I didn't think much of it because it happened so rarely and would take hours to show up. I figured it was heat rash or something similar.
After my wedding in September 2004, I was becoming concerned the rashes were getting more frequent and were getting more intense. I decided to ask my doctor about it. He said that I was probably just heat rash or I was getting into something that I was allergic to. I wasn't satisfies with that answer. I had read that birth control can cause rashes, so I asked my OB/GYN about it, she didn't think the "Pill" was the cause. So I stared researching and after having this issue for 4 years I made an appointment with a a Dermatologist. He didn't know what the issue was either but did test me for Lupus and that wasn't the cause.Back to researching I went. I found a dermatological website from Europe, and was looking at the pictures and found the term "Poly-Morphic Light Eruption" or PMLE, I had all the matching symptoms. With that I printed out the information and called an allergist. I found one that would see me with out a referral. I took all the information with me and told the doctor what I thought it was and that I had PMLE. The doctor agreed and I was diagnosed. After three or four years and four doctors I was happy that my condition had a name. The doctor actually told me at the time that I knew more about the disease than he did!
So, my life changed. Anytime I was outdoors I had to wear sunscreen and stay covered. At first that was the only changes PMLE brought to my life. Unfortunately over the years my PMLE didn't stay mild. Eventually my reaction time shrank from hours in the sun to only about 5 minutes before I was broke out. That was even with being on an antihistamine and using sunscreen. Back to the doctor I went.
In 2010, my condition was bad enough that I could go into anaphylactic shock if my reaction became severe enough. So, my diagnosis was increased from PMLE to Solar Urticaria (SU). So my life really changed. I began treating all of my clothing with "sun guard" by Rit. Wearing sunglasses outdoors, sunscreen year round, and anytime I was outdoors I always had to be covered head to toe. It also meant that I had to start carrying an Epi Pen everywhere I went, and monitor my environment.
Now, don't let my condition scare you or depress you. I've lived a wonderful life with many life experiences. And for people with PMLE and SU, many of them live completely normal lives. For some the disease even goes away completely or gets better over the years. I am a rare case.
Recently in September 2013, my condition went to the extreme. I am currently researching the issue. I have suddenly and without warning become allergic to all light. Natural and artificial. We don't know what is causing it, but I am now reacting to florescent and incandescent light. Also light from televisions, computers, and smart phones. It effects me in a number of ways physically, and within minutes.
I am going to be traveling to Detroit, Michigan just before Thanksgiving to be tested for light allergies and to discuss my status with Dr. Henry Lim. I am nervous, scared, and excited all at the same time. I have faith in God that HE will lead me to where I need to be. I believe I was meant to write this blog and teach people about this rare condition. Each week I will have something to say, so stay tuned!
"Joyful is the person who finds wisdom, the one who gains understanding. For wisdom is more profitable than silver, and her wages are better than gold. Wisdom is more precious than rubies; nothing you desire can compare with her." Proverbs 3:13-15
In February 1999, I met the man of my dreams and life John, he is wonderful and supportive in all I do. We dated for about 4 and a half years before marrying in 2004. Our wedding was held outside at my parents home, and it was a beautiful ceremony.
The first issues with my skin began in Summer 2002. I began noticing that after being outdoors, in the direct sun, I would end up covered in hives. They were teeny tiny little dots and were so close together they would make my skin look bright red like a sunburn. The hives would only appear on skin that was directly exposed, and itched like nobody's business. After I would get out of the sun they would disappear after a couple of hours. The first couple of times, I didn't think much of it because it happened so rarely and would take hours to show up. I figured it was heat rash or something similar.
After my wedding in September 2004, I was becoming concerned the rashes were getting more frequent and were getting more intense. I decided to ask my doctor about it. He said that I was probably just heat rash or I was getting into something that I was allergic to. I wasn't satisfies with that answer. I had read that birth control can cause rashes, so I asked my OB/GYN about it, she didn't think the "Pill" was the cause. So I stared researching and after having this issue for 4 years I made an appointment with a a Dermatologist. He didn't know what the issue was either but did test me for Lupus and that wasn't the cause.Back to researching I went. I found a dermatological website from Europe, and was looking at the pictures and found the term "Poly-Morphic Light Eruption" or PMLE, I had all the matching symptoms. With that I printed out the information and called an allergist. I found one that would see me with out a referral. I took all the information with me and told the doctor what I thought it was and that I had PMLE. The doctor agreed and I was diagnosed. After three or four years and four doctors I was happy that my condition had a name. The doctor actually told me at the time that I knew more about the disease than he did!
So, my life changed. Anytime I was outdoors I had to wear sunscreen and stay covered. At first that was the only changes PMLE brought to my life. Unfortunately over the years my PMLE didn't stay mild. Eventually my reaction time shrank from hours in the sun to only about 5 minutes before I was broke out. That was even with being on an antihistamine and using sunscreen. Back to the doctor I went.
In 2010, my condition was bad enough that I could go into anaphylactic shock if my reaction became severe enough. So, my diagnosis was increased from PMLE to Solar Urticaria (SU). So my life really changed. I began treating all of my clothing with "sun guard" by Rit. Wearing sunglasses outdoors, sunscreen year round, and anytime I was outdoors I always had to be covered head to toe. It also meant that I had to start carrying an Epi Pen everywhere I went, and monitor my environment.
Now, don't let my condition scare you or depress you. I've lived a wonderful life with many life experiences. And for people with PMLE and SU, many of them live completely normal lives. For some the disease even goes away completely or gets better over the years. I am a rare case.
Recently in September 2013, my condition went to the extreme. I am currently researching the issue. I have suddenly and without warning become allergic to all light. Natural and artificial. We don't know what is causing it, but I am now reacting to florescent and incandescent light. Also light from televisions, computers, and smart phones. It effects me in a number of ways physically, and within minutes.
I am going to be traveling to Detroit, Michigan just before Thanksgiving to be tested for light allergies and to discuss my status with Dr. Henry Lim. I am nervous, scared, and excited all at the same time. I have faith in God that HE will lead me to where I need to be. I believe I was meant to write this blog and teach people about this rare condition. Each week I will have something to say, so stay tuned!
"Joyful is the person who finds wisdom, the one who gains understanding. For wisdom is more profitable than silver, and her wages are better than gold. Wisdom is more precious than rubies; nothing you desire can compare with her." Proverbs 3:13-15
Wednesday, November 13, 2013
Hello From the Dark
Hello there! My name is Jackie Gilmartin and I am living with sever Solar Urticaria (known as SU in this blog). With the help of my best friend, Buffy Gerndt, we are starting this weekly blog. This blog is for sharing what I am learning about this condition, and sharing my struggles and those of my family and friends. I am not a doctor and this blog should not be used for diagnosis of any conditions or treatment. I merely want to educate people on this debilitating disease and bring awareness to the community about the causes, treatments, and living life with this disease. In raising awareness of it hopefully more doctors will be able to treat and learn about this. In my research I have found that polymorphic light eruption (PLME), SU, and various skin cancers and diseases are on the rise worldwide. Currently there is no cure for SU, and hopefully one day there will be one, and God willing that cure will be sooner rather than later.
Over the last month I had been thinking that it would be nice to help others learn about this disease, but how can I do that with being stuck at home, unable to take the amount time needed on the computer because of the light. I was praying to Jesus the other day (more like having a conversation) asking how could I do this. He brought me an answer. Buffy brought up the subject of starting a blog, and thus the idea was born. She said "You write it, and I'll type it". So, here we are. I've never written a blog and I will try not to bore you with whining or useless information. For me this will be a form of therapy and hopefully it will help others learn about the disease and even just walk away with a little hope.
I hope that you will stick with me as I tell my story over the next few postings.
Over the last month I had been thinking that it would be nice to help others learn about this disease, but how can I do that with being stuck at home, unable to take the amount time needed on the computer because of the light. I was praying to Jesus the other day (more like having a conversation) asking how could I do this. He brought me an answer. Buffy brought up the subject of starting a blog, and thus the idea was born. She said "You write it, and I'll type it". So, here we are. I've never written a blog and I will try not to bore you with whining or useless information. For me this will be a form of therapy and hopefully it will help others learn about the disease and even just walk away with a little hope.
I hope that you will stick with me as I tell my story over the next few postings.
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