781 Days

I know that I haven't written on here in a while, but I finally had the energy to write a little about my life at the moment.

Every day since December of 2017 I have fought and fought to get better. There hasn't been a day that I haven't worked to make progress - even when the odds weren't exactly in my favor. I thought that when I had surgery January 31st of 2019 that I was finally going to kick this whole sickness thing to the curb - but sadly, I am still continuing to fight through this long journey that so many of you have helped me through.

In the past few months I have been trying SO hard to prove to my docs that I can get my feeding tube taken out. We put the tube feeds on pause starting in August 2019, and I haven't been using it at all since then. I've been working tirelessly to try and get enough calories to maintain my weight. I can only do small amounts every four-ish hours with lots of dietary restrictions, but I've been working so hard around all these limitations. I've had some setbacks and bouts of vomiting, but again, I've been working so hard. Pain and discomfort after eating have become the norm. Sadly, since August when I stopped using my feeding tube, I have consistently lost weight - which means I cannot get rid of my tube quite yet :( My doctors have become alarmed by my declining weight. They are afraid that if it continues any more then I won't be strong enough if I need to have another procedure.

Today I met with my surgeon, Dr. Petty, who has given me so much hope since I first met him in 2018. Today he told me that he is concerned about my weight and that I am going to have to go back to using my feeding tube ASAP. That wasn't the news I wanted to hear - it was so defeating. I have been trying SO hard every single day to try and prove that I can do this, that I can get enough nutrients. Sadly, the number on the scale says otherwise.

Today reflected that my hard work isn't going to be good enough. I know it's not my fault. There is something going on that is preventing me from getting back to normal, but it's still defeating. We were told today to schedule an appointment with radiology to get a new GJ feeding tube placed in my stomach - it will give me the nutrition that I clearly cannot get on my own. Hearing this today was hard, but I know that Dr. Petty is going to get me better. He is one of only doctors that has continued  to value and listen to my symptoms and investigate whatever else is necessary.

Last week I had a pretty big medical test that essentially told us what things are like in my body. It's been almost a year since surgery, so Dr. Petty wanted to see how things are looking since then. The test also told us about another serious condition that has been inhibiting my ability to fully recover. Today in my appointment we discussed that test and the results. I'm not quite ready to share what exactly we have learned from it, because we are still processing the information. But, any positive vibes or prayers would be greatly appreciated.

I guess I wanted to write on here because so many of you have truly helped me along this battle that I am still continuing to fight. Your encouragement has meant SO much to me. I am so ready to be well again, to not have to rely on my tube, medicine, etc. But the reality is that right now my body can't do things on its own. It sucks. It really does. But that's just how it is right now, and that's okay. If I could get through the past 781 days of this whole ordeal than what's a few more? As one special person once said, "Rome wasn't built in a day but it was worked on every day." Some day I'll get to Rome, but we aren't there just yet.

I suffered from Superior Mesenteric Artery Syndrome and the effects of it.
If you want to read more about my story click here: https://livinlikelewlew.blogspot.com/2019/01/my-story_24.html
If you want to read more about SMAS click here: https://livinlikelewlew.blogspot.com/2019/08/what-is-smas_4.html