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!
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
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!
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. : )
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!
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.