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.

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