Full time Job

Got my BP back to norm. Heart rate was slow then to 101-108, and started dropping, finally back down to 76 BPM.

Ah, Recessive Dystrophic Epidermolysis Bullosa. It is like a full time job. At times people think it is so lucky of me not to be “stuck” at work all day. Well, I do work. I work to stay alive like everyone else, but with added challenges. My husband said the dearest thing to me recently, “Even though you are home all day, you do SO much for our family; your full time job is just working hard to stay alive.” How amazing someone sees how hard you work just to live. These words will be forever in my heart because you can feel so worthless to such a fast paced society; I know I am not worthless. I am so blessed to be given the strength to keep going. We keep a prayerful mindset and positive attitude to complete my chapter here upon earth. There are moments of tears, but you know, that’s OK. I lived for many years keeping my emotions in because being in physical pain 24/7, you feel numb—people start to wonder if you care. Well, I do. I always have, and always will.

Recently, I had been prescribed a drug that nearly killed me. Never have I experienced such psychological and physical disturbances over a drug’s side effect. While I sound like I am overly exaggerating, a husband’s tears don’t lie. There are some days I can’t even recall anymore. Some of the side effects I can remember: nausea, muscle pains, back pain (specifically my spine), MIGRAINE (2 weeks later, still lingering), bone pain, stiff neck, confusion, stuttering, nervous, vertigo/sensation of falling, bradycardia, low blood pressure, severe panic attacks, depression, loss of appetite, uncoordinated, numb arms, etc. I only took the drug for two days. These adverse effects for the drug are extremely rare. At times, doctors (not my regular doctor, who is wonderful) almost patronize me, as if it is IMPOSSIBLE for me to react to certain treatments like my body has. Isn’t it enough that I was born with a rare condition to think I may respond completely different, or perhaps, to remember not everyone will respond as the majority? At times, we may need medications to help the body to being healthy again, but it is frustrating to feel like you to have risk your life to cure one thing, only to gain another, possibly, incurable problem. I truly thought I had another trial to face the rest of my life. I already combat the largest organ of my body, and all I could think about was, the possibility of permanent damage. Thankfully, I had my beautiful husband, my mom, and close friends sending prayers, and encouraging thoughts to help me as I declined each day. I am back on the road of recovery, slowly, and my vitals have finally come back to normal.

I am just thankful I can see my husband’s face clearly, once again. I am so blessed.

It is always important to communicate with your doctor. Personally, I usually opt out taking medications for obvious reasons, my body naturally doesn’t respond well. That is my personal choice, and what has helped me maintain longevity in my lifestyle. I, of course, am not advising anyone to stop taking medications without proper consent from your doctor. There are millions of types of medications (including alternatively) out there, and possibly one your body can handle, and help immensely. Communicate with your doctor. You may think your doctor is the boss, but truth is, you are. It is making a choice together to make you feel as healthy as possible. Lastly, research and read the side effects! I am guilty of not researching medications prior to administrating. Don’t hesitant to ask questions with your Pharmacist–no question is “stupid” when it comes to your well-being.

How-to Defeat Nausea

People often ask me how I combat nausea, stomachaches, etc. I have consumed frequent amounts of antibiotics plus the uncountable amount of surgeries result in heavy narcotic pain killers. Firstly, anything I mention is what works for me. I am not condoning if you have a specific condition that all of this is a must. It is a choice. Always consult a doctor or nutritional specialist before taking anything especially if you are taking medications prescribed by a doctor. Some herbal remedies can alter the medications effectiveness. Please be aware!

How do I deal with nausea? Ginger root. My mother gave me ginger root pills as a child for motion sickness. Riding big-yellow school buses made me green! Just thinking about it, makes me green… Five to ten minutes before each ride, I would chew my ginger root pills. For a five year old willing to chew a pill, that’s amazing. To me, they taste amazing. I love ginger.

Raw ginger root: I adore raw ginger root. You can peel or chop ginger pieces, add the pieces into a tea pot—allowing it to steep for a good half an hour or more (or less). The longer it steeps, the stronger the ginger-taste. It is very calming and soothing as it enters the gastrointestinal tract. You can add ginger root to salads or lemon chicken cuisines, giving your food some pep!

Nature’s Way ginger capsules: You can swallow these capsules and relieve nausea almost immediately. If I don’t have any way of brewing my raw roots, I have ginger root capsules on hand. It’s a quick and easy way of defeating sickness. I take them before and after doses of antibiotics. However, if you are unable to swallow pills like myself, you can easily open the capsules, adding them to a small amount of water. It is very potent and has a “kick”. If you can’t handle strong, dilute it with more water (especially very warm water).

Ginger root pills: The pills are more a rare form to find nowadays unless you go to a vitamin store. Pills are chewable, but if you are not keen to chewing pills, you can swallow them. The solid-form pill is best for when you want gradual relief since pills take longer to dissolve inside the stomach.

Benefits: Helps gastrointestinal inflammation, nausea, bloating, arthritis, fevers, toothaches, coughs, and lowers bad cholesterol. Due to ginger root’s warming effect, it can boost the body’s blood circulation which helps those with thicker blood. It also has antispasmodic properties which can ease (not cure) painful monthly menses.

Here’s to happy tummies!

Touched by a Blogger

I urge you to read Charlie’s Story here: Charlie Part I

Healthy Tip Edition

Lately, I have been cautious what we put into our bodies. I love taste. I love junk food. I am walking proof what consuming large amounts of over processed foods can do to the body. Unnatural sugar is my nemesis. Candy is not my choice; ice cream, pastry, pies, etc. An occasional treat isn’t terribly wrong, but when the largest organ is constantly fighting to live and fight infections–I choose to arise feeling well, without another large blister or opened wound.  With Epidermolysis Bullosa and Squamous Cell Carcinoma, I am constantly learning something new about our bodies and its sensitivities to what we consume. Sqamous Cell Carcinoma (SCC), like most cancers, worship sugar.

Our favorite (healthy) quick fix is pizza:

• Spinach

• A drizzle of olive oil

• Tasty herbs of choice

• Garlic

• Herbed Chicken pieces

• Feta

• Sun-dried tomatoes

Pizza crust: We mainly buy premade raw dough for pizza crusts. You can substitute for anything you please!  If you want truly awesome healthy pizza crust with a spinach crust click the following link: Spinach Crust Pizza


Preheat oven 425 degrees. Baking time should be 10 minutes (depending on oven type). Once removed from oven, let pizza sit and “settle” for a few minutes.

Enjoy the yums!

Alive & Well

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

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. : )