life is only a vapor
Helping & Inspiring beyond Epidermolysis Bullosa and just life
My love for United Survivors with EB
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USeb is amazing, have I mentioned this recently? USeb had a delightful ski retreat the last week of December which was beyond amazing! USeb was started by one of my best friend’s, Jamie Hartley, Chairman of USeb (don’t let her fool you, she is extremely gifted with many talents under her wing! Hi Jamie ;)). The first summer camp was held at National Ability Center in Park City, Utah, where I met many of my friends for the first time back in 2009. If you take a look under my travels, there is an album labeled “EB Camp 2009”.
How has USeb changed my life with Epidermolysis Bullosa? Although I was raised to be confident, I still needed that reassurance I could do better than what people saw. I hardly ever met with others with EB, so I often felt alienated from the outside world. I did not feel confident that I would have succeeded by myself; however, I always had the mindset that I would someday. After getting married, I jumped right in experiencing daily responsibilities adults are faced with, but I have always wanted more because deep down I knew I could do more. I am such a free-spirit—always having the desire to travel, soak in, be inspired, but never dreamt I would see that day. My husband and I were gifted the opportunity by dear friends’ to travel to Utah, participating in the first USeb camp back in 2009. We were both overjoyed. It felt like a safe haven where I could be myself—not censor myself, empathize, laugh, cry, sing, hug, and not feel rejected, judged, contagious, or gross. We loved every moment of it. It made me realize how society is programmed into beautified perfection. But really, what does that mean? Having an absolutely perfect body without scars? It is more. I speak for anyone that has a challenge they were born with or recently developed; it does not disable you from pursuing your dreams or bettering the world. We only disable ourselves with the way we think. It is what is inside—the heart and soul.
After the wonderful experience at the USeb camp in 2009, I started going out by myself. I went even beyond that, traveling on an air plane by myself. To many, these are normal easy to-dos, but to me, it is like successfully constructing the most amazing artifact. EB does not define me; it is only part of my charm. I am human.
Beautiful day in Park City
During the recent ski retreat, I had that doubt come into my mind that I am going to be completely horrid at this! I tried being very active as a child by biking, horseback riding, and I even tried skating! It is has been many years since then so my core has not worked much, sadly. When I saw the morning group of friends that skied with their challenges, and the joy beaming upon their faces after their sessions, it immediately warmed my heart. Most of us chose to do the sit-ski in a bi-ski, which is an amazing creation! My instructor taught me amazing techniques to help with my balance and lengthening my spine. I’ve never been to a chiropractor, but it felt as if I was readjusted, in a good way. I could feel a huge difference health wise immediately after one session.
The first day of learning, I was uneasy and not as confident, but felt more at ease during the end of my session. I was stoked for my next session being the next day, but EB decided to me question about going again, at all. Skiing didn’t hurt me at all, but the overall norm of pain at the end of the day came down on me (a typical night for me usually). I changed my way of thinking the night before—rethinking this pain will not defeat me. Because, you know what EB? I just skied down a mountain today!
These are the very few reasons why I love United Survivors with EB. I urge you to spread the awareness of Epidermolysis Bullosa (EB), as well as the wonderful organization that has changed lives. Please check out their website at: http://www.ebsurvivors.org – Please tell your friends, family, strangers, etc. Donations are needed to continue to have these wonderful events of coming together and having fun!
New Year’s: fresh goals
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We were blessed with the opportunity to travel to Arizona. The trip was awe inspiring, thought provoking, and refilled with happy memories. We left Monday late afternoon, staying with two dear friends that resides 2 hours from us. We hadn’t seen them since the Summer time, so it was definitely a great time to catch up. They took wonderful care of us and we were pleasantly surprised by a lovely gift on the mattress. It was beautiful and touching—true Christ-like love in our friendship. I love that. Thank you both so much!
Arizona/Nevada border.
Driving into Arizona made many memories flood in. I was so happy to be where I made our life together after being wed; the person I fell in love with, grew up there, and I had plan to make that our place to grow old together. I thought about our future house we wanted to purchase after we saved a good amount; having our garden to grow raw goods; having a few dogs, and maybe a horse or two (I’m a cowgirl at heart), and I suppose my husband could have had his dream “mancave” and a garage full of tools. At times, God wants you to be somewhere you’d never picture yourself, which is what happened in God’s plans for us. The trials we faced had to break us so we can slowly build ourselves back up, only to be stronger for the next trials. To me it is the moments we may become too comfortable, leaning away from God, and we need to be worn thin to strengthen our spiritual walk. It only brings you closer to Christ, to seek Him much more than ever before, to be blanketed in His endless love. It does not mean God doesn’t fulfill those dreams you may have, but it is only best when we allow Him to stir.
I am learning after so many experiences throughout our life, even after such painful moments. Recently we have had to face some more painful trails, but I am looking to God to teach me through handling it. I reacted in the way as a protective mother bird hovering over her nest. Instead of making New Year’s resolutions, I make goals to meet the every need of God’s and my husband’s, every day.
Do not repay evil with evil or insult with insult, but with blessing, because to this you were called so that you may inherit a blessing” (1 Peter 3:9).
That verse remains very heavily upon my heart, that I may apply it to those moments I want to lash my tongue. God never changes, but He can change us… here is to the New Year!
Sisterly Love
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With my sister in Yosemite, California
Happy Birthday to my amazing Sister! I have known her since she was the age of twelve, or may even be younger. I don’t know what I would do without God blessing me with a faithful best friend. I am so glad I was granted another year to see my beautiful sister grow into an amazing young woman. The young woman who never thinks much of her herself, but never fails to put a smile upon my face during hard moments. I truly wish I could be there today, baking your favorite cookies in warm fuzzy socks with a mean blizzard whirling the background. I love you, sister!
HAPPY BIRTHDAY!
Happy Thanksgiving!
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Thanksgiving is not just about the food or drinking, it is about being thankful of what we do have. We ought to be thankful everyday. The very things we may overlook every waking moment of our lives. Those moments we sit motionless, moping while saying, “I wish I had more…” when we should be sitting back saying, “Thank you”. Why? I will give a personal example: I have had to deal with a lot of pain in my life; physically and emotionally, but I try my best to thank God for my pains and struggles. You are probably thinking I am completely out of my wits, but this is not of my own strength. We are human; we want and we need, endlessly. The moments I see a doctor cutting into my own flesh and taking piece by piece off of me, part of me wants to hide and never be seen again, but I pray and ask for joy and thankfulness. He delivers. I thank Him for the amazing support of my doctors’ to be able to even see me and keep me alive. I am so thankful for my husband, friends, and family that follow through with me during those emotionally trying moments. Whereas, some are not as fortune, laying in a bed of pain because they are unable to get the care I receive.
The next time you see someone, such as a homeless person, don’t judge by saying they are crazy or dirty. Think for a moment the reasons why they may have no home. Give them a warm meal. Guide them. Let them feel thankful that someone cares about them. It will change their life, and yours.
California Joys
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California, November 11, 2006
A photo I captured exactly five years ago, amazing. I was saying goodbye to California’s coast, a part of California very dear to my heart. But before I go on with sappy details… I am leaving for California later this evening and will be with my best friend, Saries, for four days! [insert cart-wheeling Monsie here] I cannot wait to see her. I was just in California in later July, but I literally had no time to see anyone.
I am going to miss my husband, but he wishes for me to have this moment with my friend. He is so selfless. I love you, dear!
Alive & Well
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We have been so busy, for the worst to the best. I am making a quick post to let my very few readers know I am alive and well. I will try to go in order what has happened:
- My mom moved out to here to Utah. Can you believe it? I never thought my mom would leave her beloved California. Surely my mother loves me more than a state. She came to lighten our load after struggling for a bit. We greatly appreciate and value her help around here. As my health was going up and down, I have not had energy to do the wifely chores as I used to do. My husband never complained to take on the extra load of chores, but it did limit OUR time together.
- We moved (still within Utah). Better location, cheaper, beautiful, and quiet. I love the atmosphere around here. I enjoy looking at my window seeing the glorious mountains God laid around us. The green grasses, white clouds, happy children… just, seeing life. My mom and our wonderful friends’ helped us move-in.
- Justin and I went to California (all expenses paid for!) for a genetic skin study. They need around 30 adults with my subtype of EB. It is not a cure, but it may possibly be something that could eliminate inflammation and scarring. Chronic inflammation causes a higher risk of skin cancer(s) to develop. The study is only in stage 1, and they are hoping to get more people with RDEB to get to stage 2 (if you or anyone has RDEB, please contact me and I will give you further information)!
- After our trip, my health went downhill quickly. I could not breathe for the life of me. I only prayed and wondered if my body was just
Blood transfusion.
too exhausted from ongoing stresses, cancer, and my disorder. Justin could no longer see me suffer, rushing me to the emergency room. My resting heart rate was around 110 BPM; my oxygen was quite low; and I experienced sharp pains going throughout my legs. The doctor did various tests on me to make sure I was not having a heart attack. Everything came back normal except my blood tests. The tests concluded I was anemic (hemoglobin of 8.4). The doctor told me, “I don’t think it is necessary for you to receive a blood transfusion. With chronic illness, it is no surprise you are anemic.” I thought to myself, “Well, you told me nothing new.” Just because someone is combating a lifetime illness does not mean they need to suffer with symptoms. Doctors’ are supposed to listen and help alleviate some discomforts. We did not feel at ease. I don’t think I slept for weeks because every time I fell asleep, I felt as if I was going to lose consciousness. Something told me to e-mail my Dermatologist that night. I told him I was struggling to find an Internal Medicine doctor. He setup the hospital coordinator to contact me. The next morning he phoned me personally, getting me an appointment right away. A few days later, we met with the very nice doctor. He asked me a series of questions, only to find out he suspected a bleeding from my stomach. I never thought I had a possible bleed, but I had been having stomach issues due to the stressful year. The doctor ordered several series of blood tests (as if I needed to lose more blood, eh?) The very next day he phoned us telling us he wanted me to come in tomorrow a blood transfusion. My hemoglobin went down to 7.0 and my hematocrit level was 25% I believe. I was not getting enough oxygen to my organs especially my heart. The next day, I received my two pints of blood, which saved my life. I was so pale, clammy, and listless; afterward, I felt pumped, rejuvenated, and relieved. I am so thankful to God for sending wonderful doctors’ until my life, and so thankful to those who donate blood. I urge you and others to donate blood—I never realized its importance until now.
More to come!
Epidermolysis Bullosa & Squamous Cell Carcinoma
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November 3rd, 2010 was my latest knee surgery which was the biggest incision I have ever experienced. I have been battling Squamous Cell Carcinoma on my knee since the age of fifteen. Doctors are flabbergasted I still have my leg AND life. I can tell you, a few doctors tried persuading me into amputating my leg about nine years ago. Understandably, the doctors’ main fear is it becoming metastatic cancer. It is a chance you take every day with a skin disorder as severe as Epidermolysis Bullosa. Some days I wake up hoping, “God, I hope my cancer cells did not decide to go on a hunt today!”
The past several months I discovered a small area on my inner wrist that seemed “off”. I was immediately convinced I had a new Squamous Cell Carcinoma spot, I felt crushed. It feels like a completely new battle when you find another spot. It has felt like an endless journey, but you know what, God still has me here and on my “endless” journey God is the one who hydrates me. Not many people realize how detrimental Squamous Cell Carcinoma is to someone with Epidermolysis Bullosa. Unfortunately, it is a somewhat popular skin cancer to healthy individuals, but highly treatable. In my case, however, it can grow rapidly causing infection, inflammation, weight-loss, energy loss, or even a painfully slow death. The countless amount of surgery is buying me time to be with my love ones here on earth. I am quite thankful I have been pleasantly blessed with this time. Love you all. : )
New hobby!
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What a fantastic day! The lovely Joy picked me up for a little painting party at Jamie’s house. I honestly haven’t seriously dabbled in paint for many years. I was always one to draw with a pencil because I did not think I was talented enough to paint. Well, I have felt very endearing and always had the desire to try painting out (I love art!). Obviously, I am no expert, but I think I have a new found hobby. Painting is a huge stress-reliever—also, great for improving the posture! Thank you Joy and Jamie for the encouragement to revive my artistic side; I am hooked! I plan to venture to Michael’s craft store to start my collection of acrylic paints and brushes. I think Jamie and I have a “painting date” this Monday, definitely excited!
April thoughts
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Ah, the month of April commemorates life, death, and new beginnings.
April 1st, 2011 marks a year after the long haul from Arizona to Utah. I don’t think I can even put this year into a paragraph, as many of you already know, it was a tough time. By the grace of God, we have made it. Our wounds are still mending, but God has the best healing touch around! My friends have been such an amazing part of getting through the moments where I felt like giving up altogether. Even those in the distance made me you were near, embracing us through it all. Throughout our pain and trails, we are recovering but learning from our experiences—it has been a trying time, but my husband and I are genuinely happy in our marriage. We won’t let any temporary dysphoria disturb our beautiful relationship.
