This last week, on the 28th was Superior Mesenteric Artery Syndrome Awareness day and this week also marks 5 years since I had surgery to help my body cope with this syndrome. If you want to read more about SMAS this post explains it in more detail. While I had a surgery that rerouted my intestines around the compression that was caused by SMAS, it wasn't a cure as the compression is still there but it did help in many ways. 5 years later I wouldn't have really dreamed where this journey would have taken me.
Last year I was diagnosed with Gastroparesis (mentioned here). In April I had a botox injection into my Pyloric valve and it was amazing. It took a couple of weeks to start working but I went weeks without throwing up. It gave me the strength to get through our move to Washington. Those who follow me on Facebook, know that in July we moved from Wisconsin for Sean to take a new position at Central Washington University. We sold our little house in record time and found a nice little duplex in Selah Washington to rent. On July 11, 2019, we officially made Washington our new home.
While the move went pretty smoothly, the stress, I think caused the botox to wear off faster then I would have liked. So we got hooked up with a Dr in Seattle (which is about 2.5 hours away) who specializes in gastroparesis and after trying some different medication, and it not really working, we tried having the botox injections done again. That was 6 weeks ago. Unfortunately this time around, the injections didn't work at all. I met with the Dr again last week and she is having me try out another medication in hopes that it might cause my stomach to contract and work. She also ordered an Upper GI Series to asses my organs. It is a test done by drinking barium and then taking a million x-rays.
Since I hadn't eaten or drank anything that day, they were able to squeeze me in so we didn't have to make a trip back to Seattle. The radiologist was really quite amazing and spent time explaining what he was seeing and he listened as I explained my medical history. This ended up not being your standard Upper GI series as they were specifically just looking at the stomach and duodenum. As we talked I helped him understand my history and anatomy which he said helped him make more sense of my strange anatomy. Because of my multiple surgeries there aren't a lot of other cases to be able to reference. So being able to competently explain things and have it received well made the test more effective for both of us.
Unfortunately, the result of this test showed that my Gastroparesis has progressed to being severe. The stomach signal that usually is sent when you eat, for me isn't happening and my stomach hardly contracts. Which usually results in getting full quickly, nausea and if I eat too much, or my stomach really isn't working, which, lets get real, feels like most of the time, I throw up.
Throwing up has become a part of my life. My girls aren't even phased by it and they are even now starting to pick up on the signs of when I have to throw up. While this isn't my idea of memories I thought my children would have of me, it is now something that is a normal thing in our house hold. My girls see me as their mommy and they don't care if I throw up as long as I don't breath in their face afterwards.
One thing I have learned is that I'm living with a mostly invisible disease. I am also totally guilty of posting the "best of" on social media. I try hard to not let my illnesses effect my life too much and honestly, to the outside eye, my family probably seems like your normal healthy family. What you don't see is all the adjustments that we have had to make to function and sometimes it is great and other times it falls apart. The important part is that we make it through and usually it is because of the friends and family that support us.
What I don't show very often is the recovery that comes with doing things as "normally" as possible. The week after we came back from Japan, I pretty much got the kids off to school and then went back to bed till it was time to pick them up from the bus. Or after we came back from our New Years trip to Utah, how I had to get extra bags of IV fluid to make it through the week. Last week I started getting IV hydration 3 times a week and it has become a part time job to keep me hydrated.
I don't like to share these things because in part they have just become a part of my life and all in all I have a very good life, but it sometimes feels like a weakness and it takes vulnerability to share weakness. Something I'm learning to become more comfortable with. Honestly being sick at times, makes me feel like I'm living a life that is less then what it could have been. Then I look at my wonderfully imperfect family and I think about how I have access to medication and IV hydration that allows me to be a wife and mother. I'm grateful for the ability that I have to do the things that I can do. 5 years ago, doing a load of laundry took everything out of me, I was much more of an armchair parent and life was just overall harder. Now I'm learning to feel more like myself and I can be there for my family and for other and can even do a bit more then I used to be able to do. I have been blessed with times that my sickness hasn't been as intense and that has helped my body recuperate a bit and regain strength.
As we look forward to the future, the goal now is to manage my symptoms and increase my quality of life. I'm getting IV hydration several times a week to reduce the dehydration that my body has become so accustomed too. Last week I experienced what it was like to have a normal bladder and it is funny to say that it takes some getting used to and needing the bathroom during the day, which is something I'm going to have to get used to.
Like anyone, I really don't know what the future has in store for me but for now we are doing all that we can to help my body out where it needs it. Right now it is handling the side effects of throwing up really well and has learned to adjust but I'm not getting any younger and so we are doing things, like IV's to make sure that I can live a long and beautiful life. This may slow me down at times but this wont stop me.
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