Tuesday, January 2, 2018

Letters To Myself

I wrote two letters to myself at the end of last year. They were both packed away in my stocking with the remainder of the Christmas decorations. The odd hiding place was intentional to ensure I found the letters exactly a year later. Their contents reflected the best moments, worst moments, adventures, and accomplishments of 2016.

Now I reread both letters. To My Future Self follows the best moments, worst moments, adventures, and accomplishments of 2016. From My Future Self summarizes expectations of 2017 that I had at the end of 2016, and is written as if my hopes had actually come to fruition.

Although 2016 is old news, and the focus of this post is 2017, my words then prevail. And in another year, my words now will hold true too.

The worst of 2017...

My health sort of plateaued in 2017. There was some semblance of unstable stability with my Mast Cell Disease diagnosis. Symptoms were on an even keel, providing I abided by strict trigger avoidance. I remained on the Continuous Diphenhydramine Infusion, SoluCortef, and small doses of intravenous Pepcid. I did tube feeds only with minimal amounts of water by mouth. I could not be in a public settings for more than half an hour. A slight alteration in just one of those things sent my body into a downwards spiral.

After not enduring the same dramatic health fluctuations of the previous year, I had time to focus on how different my life is. I fell into the trap of comparison, comparing my life to that of what it used to be and to the lives of peers my own age. Resultantly, 2017 was one of the most emotionally difficult.

I found it difficult to accept that my life was stagnant. Yet, "living to the fullest" in the way I yearned for was an impossibility. It caused to weeks to months of life threatening flares whenever I tried. I did have physical gains, but they were not enough for me to function outside of my rigid limitations. And it was not like fear was a mental restraint holding me back. It was a proven reality. I lost a close friend to a shared diagnosis and the loss made that reality significantly more real.

I distanced myself from others solely because of envy. Because they have the life I want. The life I can't have. I got angry at God for not allowing it to be.

The best times of 2017...

Feeling moderately better did not prompt the sudden influx of adventures I desperately yearned for. I was forced to confront the unproductive emotions I had struggled with.

I continued my education online. A year into my bachelors degree at a Christian college, having courses based on a Christian perspective was refreshing. I was able to take classes like Jesus In Matthew's Gospel that were not part of my major, but they were helpful in reconciling my relationship with God and releasing pent up anger. It really got me seeking God's will as opposed to my own.

November 2017
I met multiple best friends. We had connected years ago on social media through various chronic illness tags, but we had not ever met in person until this year. I am extremely blessed to have supportive friends. Their occasional company provides a precious sense of normalcy. I will never stop being thankful for those who are understanding.

Of course the highlight of the year was getting engaged to the love of my life, which I wrote a full post about in November! The center stone in the ring is from the wedding set my biological father had given to my mom before his passing. My fiancé and I experienced our first holidays as an engaged couple. It was so so special.

Read The Blessing of Chronic Illness In a Relationship.

December 2017
Winter is my absolute favorite. I got to see it snowing at home twice! Sledding down the hill in the backyard was a blast. My family, friends, and I made a snowman larger than me, complete with a top hat and a cute carrot nose.

Mom and I had endless Netflix binges, an inevitable consequence of spending sick days on the couch. Let's be real, "sick days" were a constant. The positive from such unfortunate circumstances is that we had extra quality time together that would not have occurred had I had the life of the typical twenty year old college student.

January 2017
Accomplishments of 2017...

I sent in applications for miscellaneous scholarships to contribute to my college tuition. Thus far, I have not had to pay aside from book materials. The financial protection shows that God never fails to provide.

My current medical team was tremendously helpful in managing my care outpatient—the total opposite of my health plan prior to moving out of state. I went a full year without a hospital admission!!! That is saying something for the girl who once spent 8 months out of a year in the hospital.

December 2017
Hospital or not, steroids were a necessary evil. I was on 150-200 mg of SoluCortef for daily maintenance to control my disease. Weaning in the typical manner was often unsuccessful. Decreasing the dose quickly or by multiple milligrams caused anaphylaxis, extreme bone and nerve pain, pancreatitis, and cardiac issues and arrhythmias.

Throughout the year, I discovered an appropriate method to wean. I made it to a total of 50 mg daily by weaning 0.5 to 1 mg per every two weeks. I am adrenal insufficient from long term steroid use, but I have come so far in my wean!

December 2017
Slowly upping my walking distance, considering I was mostly wheelchair bound before, is a HUGE accomplishment. I went from staggering to the bathroom and back to walking around the neighborhood. I also increased my exposures. While never without repercussions, I went in to the office supply store, Old Navy, Catos, Books a Million, and Barnes and Noble. My shopping excursions lasted all of fifteen minutes. I cherished that brief freedom nonetheless.


Going back to the letter From My Future Self, my predictions for 2017 were definitely wrong. I did not get the cure I wanted. I did not even find a medication to help, let alone a treatment that would allow me to stop the experimental Continuous Diphenhydramine Infusion that I have relied on for over two years. Every trial was a fail. I lost people I loved. I doubted my faith. Regardless, I came out stronger on the other side of the obstacles faced.

October 2017
My reflections are a reminder to keep persevering. Going into 2018, the start of the New Year has not treated me kindly. Worsening abdominal pain led me to the emergency room. I was diagnosed with acute pancreatitis with a lipase of nearly 800 and an elevated white blood cell count that is higher than when I was septic! By all means I should be admitted, but with the flu running rampant, I was discharged under the condition that I triple my home IV hydration, hold feeds, and get labs rechecked this morning. If there are no improvements, I will be admitted to discuss alternative nutrition options like TPN.

Still, nothing very good and nothing very bad lasts for very long. Whether a blissful moment, a steady mundane existence, or a precarious health crisis, I must learn to appreciate all seasons of life.