Hey there, Its been awhile! How are you doing?
So after a crazy 2020. I was really hoping and praying 2021 would be different. But boy was I wrong. They say when life gives you lemons make lemonade. Let me tell you I am trying however I have no tools and even if I did my cup has holes in it....
I must warn you now so you can make the decision of quit reading now or sticking with me till the end of this post...what I am about to share with you will get pretty gross and is a very long read.
January 26 ,started out and ended as any normal day. However, that night would change the trajectory of my life. My body woke up in the middle of the night to use the bathroom and thought I was dying. I had so much pain. I was in so much that I had to wake up Popeye. He woke up and tried to help me but nothing worked so we got in the car and went to the emergency room. They did a bunch of test and sent me home telling me that I ate something wrong and it would pass in a few days. Well a few days go by and my symptoms are worse and back to the emergency room we went. This time the doctor tells me that he has never seen anything like this and I would need to see a GI specialist.
Fast forward a few weeks... I have a GI doctor now and he has ordered me to go undergo a colonoscopy. Few days later I have the diagnosis of a rare form of Chron's disease--my entire GI tract was overly inflamed and ulcerated. He tells me to change my diet by eliminating gluten, nuts, and minimizing my intake of diary. He also tells me that after a few weeks of this lifestyle change that I would start to see improvement.
However, after a few weeks of changing my eating habits my symptoms are even worse and I am now on bedrest and slowly dying. Several more trips to the emergency room and attempted visits with my GI doctor I am left lost and in so much pain and extremely limited mobility. I make the decision to fire my GI doctor and get a new one. And then I also get a colorectal surgeon at the recommendation of another emergency room doctor.
By this time, my parents are here to help Popeye take care of me because I am no longer able to take care of myself. I have incontinence from both sides of my body. I was fainting anytime I was on the toilet or in the shower. So my parents and husband are having to clean up a lot. Every time I pooped it felt like I was pooping out razors the size of 50 thousand fiery suns. I ended up with a fistula/fissure that excreted some weird discharge which we later discover was a blessing.
It was so scary. My heartbreaks for Popeye, he has had to see and do things that no husband should have to do for a wife. But I thank God for that man. I know I wouldn't have made it without him and my parents. They endured many poop accidents from the bed to the bathroom floor because I couldn't move fast enough or my body decided it was doing it without warning. The pain was so intense that I would faint and then my body would empty itself it was so embarrassing. I hated that as 36 year old I couldn't even clean myself up anymore. I didn't have the strength. I lost 55 pounds in 6 weeks. Not the best way to lose weight if you ask me.
My new GI doctor and Colorectal surgeon came up with a plan to try to help because we all thought that without a plan or a miracle I was not going to see my birthday. God blessed me with such amazing doctors. I have about 6 or 7 different providers and they all take the time to listen to me and communicate with each other so that we are all on the same page.
By April--no medication to include any type of antibiotics were helping me...in fact, antibiotics were making it worse. So now I can no longer use antibiotics-they literally try to kill me. By this point, I now have several infections (the drainage from the fistula/fissure being one) but I can't take antibiotics. So the fact, that fistula/fissure was draining was a good thing because it mean that at least that infection was slowly leaving my body. The rest of it would be up to God. He would be my medication.
Anyway, the only option at this point was surgery. I ended up with an ileostomy bag and my colon partially shut down. We don't know how long this will be in place. However, the hope is that one day my body will be better enough to reverse the surgery. Till then I am super thankful for this bag. I name the stoma/bag Maria Consuelo.
At the beginning of May, I had some complication and was bleeding internally (not related to the surgery) and ended back in the hospital. I had to get several units of blood because I had become so severely anemic. At the end of May I started an IV treatment called Remicade and a pill called Imuran. This combination is a blessing as it is also treating my Myasthenia Gravis.
By the middle of June I was completely off of bedrest and was using a walker to get around. It would take a few more weeks before I would be able to put the walker aside and could walk on my own .
Because of how much care I needed Popeye had to forfeit his military orders and his command let him stay home to be my caregiver while I needed him. Thankfully, after 8 months he was able to go back to work and I was able to "function". I have several limitation and challenges on the daily but I am so thankful for the healing and progress God has given me.
I am now able to walk with out assistance. I can take care of my personal needs and am no longer on bed rest. Being on bedrest for 6 months is terrible and I empathize for those who are on it long term.
July--my Guam mom and sister came to visit which was so very much needed and a blessing. I miss them so much.
Anyway, 2021 also brought us a new dog. Her name is Roxy and she is a full-bred German Shepherd. We got her in October. She is a little over a year and about 60 pounds. She, however, thinks that she is a 10 pound lap dog. She has two speeds 1)sleep and 2) 150 miles per hour. There is no in-between. It took the three dogs several weeks to adjust to each other.
December brought an awesome Christmas gift-- my brother came to visit us. I hadn't seen him since our abuelita passed away back in 2019. Oh I can't forget that earlier in the year my godmother came to visit while my parents were still here. That was such an amazing weekend.
Ya'll Betty White passed away. This hurt my heart so much. She was the last of my Golden Girls living. I have watched most of the things she has acted in. If I had to pick a famous person that was my favorite. It would be her. I am in mourning. I fell like I lost my abuelita all over again. As a child we used to watch it together. My abuelita would laugh so hard and I would laugh just because she was laughing. Now that I am older and watch it I laugh hard and always think of my dear abuelita. Betty White will truly be missed in my world.
Throughout this whole illness/year I have had many people: friends, family, and strangers all around the world praying for me. And I know that I was able to see the close of 2021 because God answered their prayers. So to those of you readers who were praying I thank you for the prayers. Lord knows I needed them and still need them.
A few lessons I learned this year:
- God is on the bathroom floor. He met me there many times as I laid on the floor in pain or from fainting.
- There is major power in prayer--I would not be here if it weren't for people praying
- God has a plan for my life--what that is I am not sure--but I am praying and trusting Him to show me.
- There are still good people in this world
- The mind and body are incredible for many reasons
- The word equanimity--it ended up being the word of year. I learned its truly okay to be still and not do 50 million things. Its okay to just wake up and shower and call it a day. Some days that is enough.
Well with that said thank you for stinking with me through this very long post. I hope your year ended on a good note. I will write a new year post in a bit.
Always,
Simply That..
