What Works to Keep Me Balanced

I wanted to write today about some positives or good feelings and what is working for me  and what helps me get through the day successfully. I'm always changing it up because what works for one day may not work the next.

Aside form taking daily medications, it's important to me to be well wholly. It's important to balance yourself physically, mentally, and spiritually. For me that is what works. I pray a lot. It helps me both spiritually and mentally to pray.When I'm stressed or upset or even feeling good I pray. I pray and give thanks to God for everything I have, any worries, all of it. I spill ti all out to him and Jesus.

Since I cannot watch TV, I've learned to live without all the new TV shows, but I do listen to TV or I'll put in a DVD and listen to it. I have a TV in my bedroom and what I've done is turned all the back lighting and brightness down as low as possible and I've DIY's a screen to put in front of it so it blocks any remaining light. I still don't "watch" much TV even with the screen, but if it is something I've seen before I can picture the scenes in my head, and it's a nice alternative to the radio. Here's a picture of my DIY screen.

 I listen to a lot of music; either the radio or CDs. My music is quite an eclectic collection. I range form Christian to Country to Jazz to Today's Pop. I like almost all music. I even have some Classical. It's all therapeutic for me, and I change it up depending on my mood.

I'm also an avid reader. I read as much as the light allows me too. I read by candle light or lamp light. On a very cloudy day I can open the curtains slightly and use daylight to read by, but in any light levels I have to be careful to monitor myself and my surroundings. Our local library has quite a few books on CD so I may have to look into that.

I also read my Bible. I usually read it daily, occasionally I will miss a day especially if it's a bad light day. Fortunately I do have an app on my cell phone that will read it to me if I need. And often I do since the print in the Bible is so small.

Spiritually speaking, I work on that part of the balance daily. I pray, read my Bible, and listen to Living Stones Church services through podcasts. I talk to Jesus all the time and try to practice being a good Christian and walk the path of goodness, daily. I believe int he power of prayer and healing. Coupling with modern medicine, and my faith, it helps me remain positive and healthy. I'm hoping that my next medical endeavor will make me well enough to actually go to church again.

The physical part of the balance is the hard part especially right now with the cold weather. Since I'm limited due to the light I have to get creative, and right now the weather isn't helping. When weather is nice I walk the dogs after dark and really enjoy it during the spring when I can smell all the blooming lilacs int he neighborhood. I sometimes try stair stepping on the bottom two basement steps. With fact that before I got sick in September I used to be quite active. I used to go to the gym 3-4 days a week. So this is quite an adjustment for me.

My diet was also quite healthy, but with stress I've been slacking and with the holidays too. So I've got to get back on track. I'm also researching diets right now that help control auto immune diseases. That equals more fruits and veggies and less breads and meats, and more all natural organic foods.

When everything fails and I have a total melt down, I have my "Damn It Doll." My mom and aunt recently purchased it for me on one of their outings. They are wonderful. I yell and scream and cry all while beating the heck out of the doll. It's made to take it. I throw it, beat the bed of kitchen counter with it. It lets me get our all my frustrations and anger with out hurting anyone or breaking anything.

And of course writing helps quite a bit. I will write a letter to no one and then shred it or burn it to help me disperse my frustrations. I let it all out on paper and as I burn it or shred it I visualize everything just blowing away. And of course writing my blog helps too.

I limit my screen time to my smart phone and will comment here or there on Facebook or share a photo. It helps me keep in touch with friends and family and I don't feel so closed off from the outside world. But my time even with that is limited because even the light from my cell phone sets me off.

In terms of lighting my home I truly use oil lamps, night lights, and candles. Right now Christmas lights are working well. In my kitchen I have some under the cabinet lighting that is LED and I can handle that while cooking dinner, but that  is the maximum light level that I can tolerate. Sometimes it drives my husband and mom crazy. So, I stick to my bedroom and kitchen mostly so they can lice a normal as possible.

I hope this helps anyone who is living with photo-sensitivity and if you have any thoughts feel free to comment. It's great to share ideas. Until next time, I wish you all a Merry Christmas and Blessings to you.

Mottos, Books, and Prayer

So last week I said I had to think about my motto for 2014. I've been thinking about it and it wasn't as easy to come up with exactly the right words. Something to encompass where I've been, how far I've come in the last year and where I want to go this year, takes some thought so here it is, my motto for 2014...

"I will strive to grow mind, body, and soul by doing my best with study, practice, and meditation. I will use my God given talents to e the healthiest and happiest as possible , and I will remember to thank God everyday for the blessings I receive and all that I have."

That is the longest motto that I've ever written, but I am full of many emotions and thoughts. My life has changed dramatically since September. I am so thankful for my family and friends and words cannot express how much love I have for them all. Without their support, love and prayers I don't know how I would be able to handle this. I've been angry, happy, anxious, scared, crushed, and lifted up. I literally live day to day without knowing what my day will bring. Since my immune system is so hyped up right now I am constantly changing my routine. My system rules over all. I'm about to start a new treatment plan with the doctors. It's a risky plan from what I'm told, and I've not taken my options lightly. I'm starting methotrexate  in a couple of weeks. That means lots of blood tests to monitor my system and make sure my body is handling the drug okay. Needless to say I'm worried, but if there is any chance that it will help control my system and make life better then I'm willing to try.

I am also reading a book, "The Autoimmune Epidemic" by Donna Jackson Nakazawa. It's a very interesting read and I'm learning a ton. It's a scary, but informative read and I highly recommend it to everyone. My mom told me that she thinks I'm just the tip of the ice berg when it comes to my illness and she thinks with the way this environment is going there will be a lot more people like me in the future. After reading this book, I completely agree with her. Our environment is going to hell in a hand basket an the fallout is hitting the human race hard. Diseases are on the rise like never before and it's all tied to the food we eat, the pollution levels and toxins in the environment. Nakazawa's book fully supports my thoughts on why people are getting sick with crazy diseases and it's down right scary.

Something I'm going to be asking my doctor to do is to check my blood for mercury levels, heavy metals, and toxins. People who have high levels of these have a greater risk of getting an immune disease or it aggravates those who are already sick. Also according to research numbers int eh book, 1 in 12 people in the US has an auto immune disease, and 1 in 9 women specifically have an auto immune disease. The numbers are staggering. She also goes on to say that based on her research, statistically you have more of a chance to get an auto immune disease that cancer or heart disease.

This totally kills me! The information in this book is so mind blowing to me. I completely support tree-huggers now! LOL..but seriously, read this book. It's helping me understand my disease and hopefully I will be more prepared when I get knocked down. To my local peeps, the Mishawaka Bittersweet Library has the book, but I've got it until December 27th.

Another source of good information on immune diseases is Dr. Mark Hyman's website. He is a doctor who specializes in immune diseases and research.

So what's working ans not working for me? It varies day to day, depending on my system. This is my day in a nutshell...
*Get up at 8:45 am, take meds and use sunscreen.
*Go back to bed and let the meds work; I often either sleep or read for awhile.
*Up and moving by 11 am, but I remain in my bedroom as it's the most controlled area for lighting.
*Depending on weather, I start opening the curtains about 6 inches to 12 inches to let the light in around Noon or 1 pm.
* Cook lunch and take the afternoon meds and more sunscreen by 1 pm.
*Usually from 1:30 to 5:30 pm read or craft or do household chores like clean or bills.
*6:30 pm cook dinner and take evening meds but all depends on my system.
*Then in the evening listen to radio shows and play cards by candle light.
*11:30 pm bedtime meds and sleep.

Needless to say I don't get much done and I'm limited by the light levels. Some days I'm in the dark all day long and others I can handle more light.

For now I will close, but I plan to talk more about diets to help auto immune and positive things that are helping me right now.

Prayer for Healing Your Immune System (taken from "God's Creative Power for Healing" by Charles Capps
"My immune system grows stronger day by day. I speak life to my immune system. I forbid confusion in my immune system. The same Spirit that raised Christ form the dead dwells in me and quickens my immune system with the life and wisdom of God, which guards the life and health of my body."

Mummified and Microwaved

December 11, 2013

Wow...It's already December 11th and I cannot believe that 2013 is almost over. I'm going to have to come up with a new motto for 2014 soon. Last December I started coming up with an annual motto to live by for the entire year. Rather than making a New Year's resolution, which all I do is buck them and feel like a total failure, I try to live by a motto. It helps me to reach my goals and live outside my comfort zone and try new things. I'm going to have to think about this for a little while and get back to you on this.

In the meantime, I've had a few people questioning my testing experience in Detroit. The most common question is "How do they test you for a light allergy?" And really its not too bad. So, today I'm including some photos and an explanation. The best way for me to describe it is to be "mummified and microwaved." The testing takes about 3 hours and the worst and longest part is mummification. Now, I don't have any photos of this part but what they do is wrap and cover you head to toe so only your back is exposed you are wrapped and taped so only what they need exposed will receive light. On your back they put a thick fabric piece that has blocks cut out of it with little flaps that can be open and closed. They write on your back in marker also. They trace the boxes in black marker so when they take everything off they can see where you were exposed and read the reaction on your skin. This I have pictures of.

So after your all wrapped or "mummified" hey put you in a light box. the box is metal and about 4ftx4ft on the outside. On the inside it is lined with mirrors and tube lights bulbs, and inside it's about ftx3ft. Basically it looks like a 4 sided tanning bed. So you're standing  in the middle of this box, and they close the doors behind you. They turn on the box and it sounds exactly like a microwave running. There is even a timer that goes off when its done. The timer sounds exactly like a microwave going off, and while the machine is on it is very hot. YOU sweat a lot. So this is why I say you're "microwaved." For the UVB light there are 8 boxes on your back and for UVA light there are 4 boxes. So you are exposed a total of 12 times. Afterwards you are so deliriously happy to be unwrapped!

The test for visible light is so much better. You're still mummified  but you get to sit in a chair and there's no light box. Thank goodness! They test your arm for visible light instead of your back. They again have a fabric box pattern for you arm, but in this case they tape your arm to a table and shine light on it for a total of 1 hour, in 15 minute increments. Thank goodness they don't leave you alone and talk to you the
whole time.
Overall its not a horrible experience but I don't want to ever have to do it again. Especially the allergic reaction part. That was the scariest part. the rest of it was tolerable, and the doctor and nurses were awesome.

Overall I am learning so much, but it's slow going. I have a doctor appointment on Friday to discuss my options for further treatment. I'm nervous about my options. IN the meantime I'm having reactions daily to light in my house and its discouraging that I'm stuck in my bedroom on sunny days, but then I think it could be worse, and I count my blessings and try to shrug off the negative thoughts, and think of all the people who love me, and those I help by making them laugh with me. So for now, I will close and next time I will talk about what is working for me and what my motto for 2014 will be.

Mixed Feelings

December 4, 2013

Hello my readers! I hope your Thanksgiving was a great one. I had a pretty good one. It was the most relaxing day of the week. My wonderful husband made a beef brisket in the smoker for the first time. My brother's birthday was also on the 27th. I made sure to call him since I was in Detroit.

Speaking of Detroit, I made it there and back in one piece with thanks to my chauffeur and bestie, Buffy. It was actually a good trip even though it was a medical trip. I made two new friends, Katrina and Wally, who are amazing people and I thank them dearly for letting me crash at their place and live in the dark for two and a half days.

So, the trip to Detroit was so I could have photo patch testing completed and get some answers to my condition. I got answers and I have mixed feelings about hem. I'm happy that I know what the issue is, but I'm concerned/angry/sad about the results. My doctor was Dr. Henry Lim with Henry Ford Health Systems and he is wonderful. Very good bedside manner and an awesome person all around.

So what they tested me for was allergies to UVA, UVB and visible light. As it turns out I have Systemic Solar Urticaria, and I'm allergic to UVA light. In fact, the UVA light was the last test and I was so allergic I didn't even get all the way through the test. I ended up having an allergic reaction that was severe enough to have them observe me for an hour after the office closed and required immediate antihistamines. They thought they were going to have to use my Epi-pen on me. Super scary, and I don't want to do that again.

So, it's official...I am a freak or a medically proven vampire. I'm allergic to sunlight and artificial light both. This leaves me with a total and complete life style change. I'm relieved to know what's wrong with me but truthfully, I'm scared to death about my future. I cried for 3 days when I learned this is permanent and I pray. I pray a lot for many things. God answered my first prayers when I needed to know what was wrong with me. Now I pray to give thanks for faith, for health, for understanding, and for peace. But most of all I pray for a miracle of total healing. Miracles happen everyday and one day I will be healed whether here on earth or in Heaven.

After my three days of feeling miserable for myself I got up and dusted off my big girl panties and said, "okay, my life will never be the same." So, what do I do now? I learn ways to cope. I learn how to live as healthy as possible for as long as possible, and remember it could be worse. Yes, this is debilitating but it's not the end of my world. There are people out there who have it much worse off.

At this point there are two treatments available to try to control my system and get me living some what normally. Depending on how controlled I am, I may be able to return to work, but only time will tell. I'm praying for the best possible outcome.

As I figure out how to cope and live daily I will share what works and what doesn't work. I will share my fears and my joys, and even my adventures. My goal is to live as normal as possible and as healthy as possible. I don't want to withdraw from society or lose my friends and family. One of my biggest fears is being alone and losing contact with people. You really do learn who your true friends are and who loves you.

I always try to remember that God is in control and we may not understand why things happen but we need to have faith. Until next time, take care readers!

Always the Student

***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 :)*

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

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

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.