Life is such a wild roller coaster. It has the highest of highs. Living life to its fullest. Experiencing new adventures. Days of no pain and only bliss. New friendships. Being alive. Happiness. Health. Stability. Peace.
It also has the lowest of lows. Illnesses. Pandemics. Uprisings against horrible social injustices and human rights issues. Divisive dialogue. Fear. Pain. Misery. The unknown. Stability slipping away.
If I have learned anything since I became sick shortly before turning 13, is that you have to hold on. Grip onto that bar that holds you in on the ride. Never. Let. Go. You will want to. It will seem easier to. After all, having wind hit you again and again is exhausting. It is like a merry go round. You just want off. But please, I ask you to hold on.
Life is a novel. That line is an understatement. Each page is being written moment by moment. I cannot tell you what is happening next. Somedays I wish I could, but I feel it is important to experience it as it comes. Easy to say, hard to do. I believe in the innate good of humanity. I have to. It gives me hope. I do not know how else to feel peace while standing in the middle of a storm that seems to never end.
This roller coaster ride is an intense one. I do not think I will ever forget the miracle that came to my family and I on August 7th, 2018. It came after a year of feeling my body slowly shut down. One of the most trying years of my life. But on that day, my treatments finally worked, I regained motility. It has been nothing but a blessing since.
Not many can come out of intestinal failure, I know that somber fact so well. I have lived it. I have lost friends due to it. I will never take a moment of eating for granted- I promise.
It seems that whenever you find a new normal, things change- and they change no matter how hard you fight for stability. My motility has gradually declined since the fall. My IVIg treatments were decreased this winter, despite my decline, in a process of trying to figure out my long term treatment plan. My health has slowly slid down a cliff. It has been one of the most emotionally challenging things I have ever gone through. To feel yourself slipping back into a dark place with your medical status.
My autonomic dysfunction has started to dictate my days more. Daily headaches have returned. No longer able to have some ability to control my body temperature: hot flashes and cold flashes. I feel fatigue, brain fog, issues focusing.
My colon simply does not work as it should. The only thing producing a bowel movement is weekly clean-outs with two bottles of magnesium citrate. A combination that is critical, but leaves me so sick for three days. It causes horrible headaches, nausea, dizziness, autonomic dysfunction flares. Then, at the end of the week, I have to resume the cycle all over again.
I always find it funny. I look the healthiest I have in a long time- even though body image issues make that beyond challenging to see. I am almost to the end of my two year steroid wean, and my face is slowly returning to normal. But inside, my body is not right or healthy.
It has been an ongoing discussion since December as to whether to do surgery or not. I did not think much of it, because I had this strong hope I would bounce back before the spring. Since this spring, it has not been easy. Not one bit. It has been stressful, sad, and scary to feel this way and have no control over it. Especially when I have worked so incredibly hard to be where I am today.
Amidst all that is going on in the world, there is a tremendous amount of things to think about. As I have done this cleanout routine since late winter, I have realized I need help. It was time to wave my white flag and say, “I need help”. Those words are so hard to say but they are critical to acknowledge. I am constantly learning how to be better at that.
My original, beloved, surgeon moved to be chief of surgery in New York. She has been a saving grace in our life. I firmly believe I would not be where I am without her. With her guidance from across the country we were able to find a new surgeon. During the first 10 minutes of my appointment I observed him. Unsure of trust, and being the typical introvert I am, observation is how I know if I will work well with someone.
Right away I knew- I knew I could trust him. That I could hand over my complex care to him. He was kind, intelligent, compassionate, thoughtful. Most of all, he listened. My mom and I feel that there were so many God sightings within the setting up of that appointment, and how it ended.
No one ever wants surgery, ever. But people do want to feel better. I have been tired of the inclines and declines. I discussed this a lot with my friends, family, medical team, inner circle. I tried to listen to my body.
I cannot believe I am saying this: but I am scheduled for surgery once again. I will be having surgery July 21st to place a cecostomy tube. The surgeon will go in, assess things, take down adhesions and work through scar tissue, and pin my cecum and appendix to my abdominal wall. A tube will then be inserted into my abdomen. This will allow me to flush out my colon daily, and manually move my colon in the ways I am not able to. This surgery will be performed, as well as increasing my immunosuppressants and going back up on my IVIg dosage. We pray it works. I pray I do not get an ileus. But if I do, I know I can get through the absolute agony of that. I pray for safety doing this amidst a pandemic that is gripping our world. I pray for peace because I feel bad for separating my family once again.
I know we are all on this crazy ride together. We are all trying to hold on and make it through. We can hold on together. I promise you, you are not alone. Please hold on.
I am so ready to feel better. This has been a trying road, and I am ready to regain some much needed quality of life.
All of my love, always,