Check out my new post on my new blog:
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New post is up: https://anomalyadventures.com/2016/09/10/therapeutic-writing/
It talks about the therapeutic value of writing and that there are some interesting topics coming.
Hey everyone. Sorry that it has been so long since I have last written. However, I do still read all of the comments that come through and try to respond as much as I can. (Even if it is super delayed. Will you believe me if I say that the GP elves take me hostage? No? Well, it was worth a try!)
It still boggles my mind how a little blog that was made as nothing more than a creative outlet for everything I went/go through with Gastroparesis has developed such a following. There are still new likes and followers each week. I’m glad that my writings have helped so many people not feel alone.
Lately, I have been battling my Endometriosis more than my Gastroparesis. I have also really missed writing and having the creative outlet. As such, I decided to create a new blog that is a catch all of everything. There will still be Gastroparesis stories, but there will be many other things as well.
Please hop on over and check it out. http://www.anomalyadventures.com
Yes, I am FINALLY making good on my word to start writing again. Gastroparesis awareness is something that I am passionate about but I admit that I needed to step away for a little while. It can get frustrating and tiring fighting and advocating for something that is so difficult for people to understand. Another reason that I stepped away for awhile was to plan my wedding! Yes, that is actually me and my husband on our wedding day in the photo posted above.
As anyone with Gastroparesis knows, there is only so much that can be accomplished at a time without a good old fashioned nap! Naps are a glorious thing for anyone, but it is even more glorious when you have a chronic illness. In fact, naps become a downright necessity. (Sorry for that tangent!) Given that we were planning a wedding and making a TON of decorations, something had to give in order for me to survive. My health has been holding up well, but when I tank, I tank HARD! I still have times where it is like someone switches a light switch off. One moment I will be fine and the next moment I can barely walk from exhaustion. Add some stress to the mix and it is a recipe for disaster.
In addition to our wedding, we also hosted a big family picnic the night before. We had A LOT of relatives traveling long distances to attend and we wanted to see them as much as possible. To be honest, the picnic was more stressful than the wedding. I had been pushing myself pretty hard in the weeks leading up to the wedding and at some point during the picnic the light switch turned off. I was exhausted, dizzy and couldn’t really eat anything. I felt like a zombie at a couple of points.
Thankfully, I made it to bed early and felt better the morning of the wedding. (I’ll admit some Zofran definitely helped!) My 2 bridesmaids and my mother really kept the vibe calm and relaxed. I’m so thankful to them and how well the understand that Gastroparesis is so random.
I will say that Gastroparesis actually played a role in making our wedding day magical. It was an outdoor wedding with the reception in a pavilion. We had yard games and s’mores planned. Shortly into the reception we were greeted with a torrential downpour. We laughed it off and kept the party going. So much of a chronic illness is, as the saying goes, learning to dance in the rain. Well, we literally danced in the rain! A chronic illness like Gastroparesis teaches you to just roll with the punches and make the best of any situation. You learn very quickly that you can let things that you can’t control dictate your mood. Only you can dictate your mood. Yeah, sure, have a moment to think “this really stinks” but then let that moment pass and remember that where there is rain you will find a rainbow!
I found the rainbow that is my husband and I hope that you find your rainbow too!
This weekend has been beautiful outside but I have been happily sitting at my laptop preparing a binder about Gastroparesis for my meeting with my Congressman tomorrow. All in all, I am quite pleased with how the binder has turned out. It includes a lot of great information about Gastroparesis from a variety of sources.
I am now working on my talking points and the order I want to present them in. Practicing some of the statements has made me quite emotional. It is so hard to not have your voice quiver when talking about how people are quite literally starving to death due to a lack of a cure and treatment options.
It’s difficult to talk about finding your Plan B in life and continuing to pay the bills. Talking about how your life has been quite literally turned upside down and all of your priorities have changed. Things that once seemed so important now seem so trivial. Discussing how this shift has cost you your relationship with what were once dear friends and even your own family. Describing what it is like to have people disappear from your life because they don’t know what to do with you.
It’s also emotional talking about all of the new people that have been met due to Gastroparesis. People that are some of the strongest people I know. People that have overcome some that most amazing obstacles. There are also the caregivers who never complain and keep trying to help us in the best ways that they can.
Gastroparesis brings together people from all backgrounds into one unified voice. A voice that needs to be heard & I’m more than thrilled to be speaking to my Congressman tomorrow on behalf of all of us.
Now it’s time for me to get back to it so that I can represent tomorrow!
There comes a time in the life that you are offered such an amazing food selection that you just have to try it. You have to throw Gastroparesis caution to the wind and try the detectible dish that is placed in front of you. You know that the odds are high that you will pay for it later. You know the amount of Prilosec you are going to have to consume to keep the GERD at bay. You know the amount of Zofran you have to take to keep from vomiting. You know that in spite of all this that consuming the dinner placed in front of you will be completely worth it.
The conference I am attending has a legendary dinner. Considering this is my first time at the conference I wanted to partake in it rather than bringing in my smoothie to consume while everyone else dined. (I have been known to do this and have become immune to the stares that it gets.) The menu contained a fish option, which I knew was going to be a really horrible decision. (Fish doesn’t go well for me at all.) Another option was Antelope which was quite intriguing. Yet another option was cocoa covered steak. Considering I had never had antelope (who has?), I had absolutely no idea what the damage would be. I decided to go with the controlled damaged of steak. It also had a side of potatoes that I knew I could stretch out over the course of the evening.
The dinner came and it was A-M-A-Z-I-N-G! I decided that for the next 60-90 minutes that I would be “normal”. I was going to forget that I had Gastroparesis. I was going to forget that I would likely end up with stomach cramping, horrible GERD, and nausea. I was going to enjoy this dinner no matter what the consequences were. (Sorry to everyone reading this on TPN & Feeding tubes!) I decided that I could lessen the potential damages by consuming bites of food that were the size of a pencil eraser. This also helped to stretch out the consumption which allowed me to “finish” at the same time as everyone else. Even though my plate was more than half full, I was done eating at the same time and the server was more than happy to whisk my plate away with everyone else’s. No one noticed. No one asked questions. No one cared. For one night I was “normal” and enjoyed a taste of my pre-GP life.
Now I am going to try to fall asleep as fast as possible before all of the Gastroparesis symptoms kick in. Hopefully they work themselves out before I wake up in the morning!
There are many downsides to Gastroparesis, but one of the coolest things about GP is that you meet so many amazing people from all over the world. Most of the “meeting” is on-line. In fact almost all of the meeting is on-line. You chat on IM, you send Facebook messages, Twitter messages, share items on Pintrest, or maybe chat on the phone. It is amazing to see and hear all of the great things that people are accomplishing in spite of Gastroparesis.
It is so helpful to make Gastroparesis friends to share in the ups and downs, to laugh and cry, and to understand what the heck you are trying to say during brain fog. For me, I have been privileged enough to make a GP BFF. Something about our personalities just clicked immediately when we were chatting on-line. We swear that we were separated at birth!
We are both working professionally and have chatted numerous times about the challenges of navigating Gastroparesis in the work place. It is a very difficult situation to navigate and it helps to know that someone else is treading the water with you. It helps to have someone know exactly what you are talking about when your brain leaves you. It helps you to know that you are not going crazy and that so many things that now happen to your body is a result of this horrible disease.
Marie (My GP BFF) lives on the opposite coast of the country as me. As such, we never thought that we would meet in person. We have only ever communicated via IM and have never spoken on the phone. Although, I can tell you that there have been more than a handful of occasions where she has completely turned my day around.
Today was quite special. I was flying into Washington DC to advocate for Gastroparesis and so was Marie. In fact, we had decided to share a hotel room. So today, we met for the first time in the Washington DC airport. It has been a fun day of talking in person to one of the best friends a girl can have!
So as much as Gastroparesis turns your life upside down, it provides you with an opportunity to meet so many amazing people that you would have never met otherwise. I am so thankful for the on-line support groups and for all of my GP brothers and sisters. I hate having this disorder but am so glad that it provided me the opportunity to meet all of you.
PS…Hey Marie! I see you over there, you’re not just in my computer anymore! 😛