Reflections on the year 2023

Dear friends,

If you’ve been a long time reader of Pain With Purpose, you probably know my tradition of writing a post reflecting on the previous year. 😊  Get ready….this will definitely be my longest post in a while!

Compared to 2022 (which had no surgeries, hospitalizations, ER visits, or infections!), 2023 was a doozy. Looking back, I believe the Lord in His providence was giving me a nice long, stable break in 2022 to help prepare me for this past year. ❤️

God answered our prayers in that I was physically able to have a part in my brother Curtis and Courtney’s wedding in February. I had so much fun using my hand lettering skills to create all the wedding signage for them. Living with chronic health issues for the past 13+ years, I sometimes can feel stuck where it feels like you’ll always be known as the “sick person.” So it was such a blessing to join in the wedding festivities like a healthy, “normal” human being and just have fun as a bridesmaid! Truly a gift from God! We all have special memories we’ll never forget from that beautiful day. 😍

But, things started going downhill the following week. *Note: any sentence/paragraph you read in asterisks means the issue is ongoing.*

-Just 3 days after their wedding, I battled sepsis for the 5th time because my central line had a tiny hole in it (from old age) where bacteria got in. I underwent bedside surgery to get that infected line removed and have PICC line #1 placed. In addition to the many fevers, chills, vomiting/retching, severe nystagmus, and intense body pain, my multiple IVs in both arms kept blowing/infiltrating from all the heavy duty IV antibiotics and medications—it felt like my veins were being shredded. 😔

-I caught a bad GI infection (C-DIFF 😩) on top of being septic due to all the hospital germs. 😷

-Had surgery in April for a port-a-cath placement below my collarbone. My PICC line was removed, and I also had my j-tube replaced to a new one.

-One week later, I had a severe allergic reaction to the surgical glue over my port incision. Had to go to the ED to get PICC line #2 placed.

-About 5 weeks later, my port incision was healed well enough to get my port re-accessed and my PICC line removed once again.

-Soon after that, my somewhat new j-tube got stuck in the wall of my abdomen. Had to get it removed and have another one placed again. My general surgeon experienced great difficulty removing it, though, so she basically had to yank it out which was so traumatic—I bled a lot and burst into tears. 😭 

-Due to that traumatic procedure, my abdomen started developing a huge abscess. My mom had to take me to the ED at 3 AM in August because of horrendous abdominal pain. I had to undergo bedside surgery to have the abscess opened up and get a drain placed.

-My port site also started developing another allergic reaction around the same time, so I had to get PICC line #3 placed.

-The abscess got even worse which required multiple visits to my surgeon’s office. The resident had to flush more of the pus out and pack gauze into the incisions since the drain wasn’t helping.

-I was prescribed high dose antibiotics, but they ended up causing neuro-toxicity symptoms. One symptom I experienced was hyperkinesia—I had to constantly keep moving, and it was terrible during the night!

-The area next to my j-tube never healed properly after the abscess was gone, so my doctors referred me to the wound care center. *I continue to see them every 2 weeks because the skin does not have healthy tissue and is also so raw and painful. It hurts terribly when I eat acidic or spicy foods because bile leaks around my tube and burns the area even more. I have to get a 3rd j-tube replacement soon..* 😣

-In September, my legs started aching constantly.. I’ve had small fiber neuropathy for many years now, and that pain feels like your feet are burning and on fire. When this deep, bone-like aching pain in my legs began, it was very hard to experience on top of the nerve pain. 🥺  *The deep aching leg pain together with the neuropathy still continues to this day. Sometimes my arms ache as well, and I just feel miserable with so much going on.*

-Every major infection and allergic reaction I dealt with throughout the year caused my mast cell activation syndrome (MCAS) to go haywire. Mast cells are immune cells that protect our bodies from pathogens and allergens. I sadly had constant reactions to the adhesive dressings over my PICC line, and my infusion nurses exhausted all hypoallergenic options. *I now have to have twice a week PICC dressing changes because my PICC site gets all inflamed/burned from reacting to everything (even cotton gauze under the dressing). The rash/itching is terribly aggravating day and night because I can’t scratch underneath the PICC dressing. The goal is to use my port once again and stop using the PICC (especially because PICCs aren’t a long term option, and time is ticking), but it can’t happen until my MCAS is more under control.* 😞

-In December, I sought a second opinion with another mast cell specialist a few weeks ago, and she agreed that my severe leg pain and other current symptoms are due to inflammation from the MCAS flare-up. *She started me on a treatment, but I will share an update on that another time.*

As you can see, there were some very dark days in 2023. 😢 When something new always happened on top of everything else, it got so overwhelming. I cried out to God many times, saying, “I can’t do this without Your strength. I need you, Lord!” And you know what? God heard each and every prayer. This verse came to mind from 2 Timothy 4:17: “But the Lord stood by me and strengthened me, so that through me the message might be fully proclaimed and all the Gentiles might hear it. So I was rescued from the lion’s mouth.” Every dark day…every time there was bad news…every moment when the pain was so heavy to bear, God armed me with the grace and strength to “share in suffering as a good soldier of Christ Jesus” (2 Timothy 2:3). And with His help, I made it through a rough year.

I don’t know what will happen in 2024. Maybe there will be even more dark days. But, no matter what happens ahead, Isaiah 50:10 reminds me, “Let him who walks in darkness and has no light trust in the name of the Lord and rely on his God.” So, as I pick up my cross daily this new year, I pray that I will keep trusting in the Lord and continue running with endurance the race that is set before me (Hebrews 12:1).

To close, I want to give thanks and praise to God for how He always stood by me and strengthened me through the highs and lows of 2023. He never abandoned me. He is a faithful and compassionate God! I also want to thank all of YOU who have stood by my side and lifted me up with your steadfast prayers. ❤️  I am so humbled each time you say a prayer on my behalf or like/comment on my posts with such caring words. Your love and kindness blesses me time and time again! 🥰

Happy New Year!

Love, Kerissa