Monday, June 23, 2014

time to be honest

I've had a lot on my plate lately and even more on my mind. Think it’s time I finally speak up.

I'm not well. I have two auto immune diseases and they are both pissing me off. I have Crohn's Disease and Grave's Disease. Look them up if you are interested.

Right now on top of that, I have a sinus infection. While that may not seem like a big deal to some of you. Think again for those of us with one of the above diseases or both.

I had to make a conscience decision today on whether to take the antibiotic to clear it up, or whether to let it "clear itself up". I wish number two were an option.

Instead, I begged the doctor not to send me to the ER because my heart rate was low and my O2 level was super low. I begged her to give me 30 minutes to get the O2 up as I knew that I was cold when I came in and those stupid finger monitors suck. I knew that I had just taken my beta blockers 2-3 hours earlier, so my heart rate was at its low for the day because the meds were actually working for a few hours. I won that battle. O2 came up, and heart rate stayed at 60.

Instead, I went over the one antibiotic I could take and the new risks that are in research over this one med and my conditions.

You see, not only do I have Crohn's Disease and Grave's Disease, I also have a crazy high heart rate without beta blockers (which is caused by Grave's). I also have a huge inflamed thyroid....that is swelling both on the outside of my throat and the inside, which makes swallowing pills, food, liquid, and spit pretty exciting (this is also the Grave's Disease). I also have low potassium without medications (this is due to Crohn's disease). I also take chemo medication to try to keep my Crohn's under control. I also have days where my brain doesn’t seem to function correctly due to Grave’s. The Grave’s gives me tremors on my right side that are similar to Parkinson’s.

Because of these things, the simple antibiotic that I was given can be life threatening to me. As mentioned above.

“ The U.S. Food and Drug Administration (FDA) is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias. This communication is a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart.”

Do you see that above? Because of this, I have to cut my beta blocker dosage in half so that I don’t get a “potentially fatal irregular heart rhythm”. Because of this, I have to monitor my blood pressure and heart rate every 2 waking hours to make sure my heart rate doesn’t get to high because I have to decrease my beta blockers or too low because I have to take the antibiotics. Win-win? More like suck-suck.

And before you ask, yes, I have to take the anti-biotic. Because as mentioned above, I am on chemo pills to suppress my immune system so that something else doesn’t take over. If I ignore a simple sinus infection, things could become VERY bad and VERY QUICKLY.

So for those of you that think I exaggerate or am lying about my conditions, research. Ask questions. Listen to me. Take the time to be my friend or my family, instead of talking behind my back. Either accept that this is my life and stand by me or walk the hell away, because I am tired of two faced “friends” or family. If you think this is about you, it just might be.

I do have some true family and true friends that have stood by my side for me and for Ben (you know who you are). And for those people, I am forever thankful. There aren’t too many of these people that have been there for us through these tough times, but they are there forever. Some of them I’ve never even met. Some of them have been in my life for all of it.

So, while this seems like I am pissed, I am grateful for those that show that they are there. Sometimes all it takes is a simple phone call or text or email or FaceBook message or comment. Just to say you are praying and you care.

I really really appreciate and love the un-conditionals in my life. Thank you!