When I Blog...

Sometimes it's hard for me to blog about my life as a Chronic Illness Warrior. Sometimes it isn't. I enjoy writing...it's an outlet for me. It's a way to connect with others going through the same or similar situation as I am going through. It's a way to make, not only MYSELF not feel alone, but others out in this great wide world who are struggling, know that they are not alone either. 

It's also a good way to keep family and friends that I don't speak to or see on a regular basis informed on the latest and not-so-greatest. When you go to the doctor or emergency room or urgent care as frequently as I do, blogging about it in a (fairly) humorous and informative way helps your loved ones know what's going on with your health without worrying them to death. 

The only time blogging, facebooking, tweeting, or Instagraming about your health becomes...aggravating... is when people, Lord love 'em, try to help. I have been offered all kinds of "healing" and "helpful" pills, creams, oils, powders, liquids, and referrals to doctors that it is not even funny. I know that people only mean well and they don't want to see someone they know suffering with an illness, but...BUT, don't you think I've/we've tried everything under the sun?

How does one handle this exactly? You never want to OFFEND anyone! And you don't want to seem ungrateful. They're trying to HELP! 

I have learned that I just REALLY have to explain the ins and outs of my disease(s). For example:: If I cannot keep water down very well, how am I going to keep that pill down? But thank you for thinking of me! 

Life as a Chronically Ill person is not for the faint of heart. Sadly, you have to think about how your disease affects those around you as much as it affects you. It's not something that is your own, it's something that becomes everyone else's because they either think you're A) selfish, B) not trying hard enough to cure yourself, C) THEY have the cure, or D) they stop caring. 

And then...sometimes...you even wonder the purpose behind blogging and sharing...but you know that you have a story to tell. 

The Domperidone Journey

The journey to even be ACCEPTED to take Domperidone is a daunting one. You must first consult with a GI that can prescribe it, then have a Gastric Emptying Test, an upper GI, blood work, and an EKG. If everything checks out, THEN you can start Domperidone.

For my particular health care facility, you can only get it at ONE pharmacy and they're open at very specific hours, so it made getting it really hard. But, on the positive, at least I don't have to go to an outside pharmacy! (Yay!)

I started taking Domperidone a week ago,  four doses a day (one tablet 30 minutes before each meal and one at bedtime) and within a day or so I was getting pretty bad headaches by the second dose of the day. By the third day, I noticed I was feeling even LESS hungry than I already feel normally and, to make matters worse, I was starting to feel constipated despite taking Linzess daily. 

Often times I think people expect miracles from medication in a short period of time, so I pushed on feeling the way I did. Over the weekend, however, I was like a zombie and that was it for me. I emailed my doctor about how I was feeling and he suggested discontinuing Domperidone to see if there is any change in symptoms. If so, then I cannot continue with that treatment [insert sad face]. 

Gastroparesis is an ugly, confusing, difficult disease that nobody knows much about. I keep my head up and keep marching on and doing my best because I have to. I encourage everyone out there with it to do the same. Just because my Domperidone journey seems to be a rocky one doesn't mean that yours will be too, try it if you qualify. It never hurts.