Thoughts on waiting.
Kerissa • October 15, 2015
Hey friends,
Tomorrow, rheumatology is getting me in for the Periodic Fever Syndrome, and I’m so thankful to the Lord that it’s much sooner than January.
The appointment is at 1 PM. Please pray that this specific dr. will be able to start treating it. The numerous fevers are hard on my body, and I’ve been dealing with episodes of joint pain and inflammation since August.
I received my repeat 24 hr. copper test results, and sadly, the level increased from 77 to 106 in just a month (normal range is 3-50). We have lots to discuss with my GI dr.. I see him this coming Monday. I also have a follow-up with my sleep medicine specialist next week.
I will update after those appointments!
To end, I recently came across this little “devotional” I wrote years ago. I can’t remember if the homework assignment was to paraphrase a passage or an original composition. I don’t even recall when I wrote it (my bad for not putting a date!)…maybe it was after being newly diagnosed with Complex Regional Pain Syndrome (aka Reflex Sympathetic Dystrophy) or when I started dealing with all my other numerous rare diseases. Nevertheless, I wanted to share it in hopes that it encourages you.
The Hardest Thing to Do
by Kerissa
Wait
. Sometimes, this word can be the hardest to accept when in times of trial or tribulation. There will be times when we ask with little faith, “Why do I have to go through this?” or “God, why am I suffering?” What can be done about these questions when one is anxious for answers or does not know what path to take?
Although waiting
on God and humbling one’s self can be the hardest thing to do, God states in His Word that His “plans…stand firm forever, the purposes of his heart through all generations.” We should not worry about anything because He always intercedes at the right time. Psalms 27:14 says, “ Wait
for the Lord; be strong and take heart and wait
for the Lord.” Complaining like the children of Israel did against Moses will do nothing. Waiting
in quiet patience and faith, even when under affliction, will bless God and make Him proud.
If we accept our difficulties with humbleness, we will be able to say with confidence, “Now, Lord, not my will, but Yours be done. I do not know what to do. But I will wait
until You drive back my foes. I will wait
, for my heart is fixed on You alone, O God, and my spirit waits
for You in the full conviction that You will be my joy and my salvation, my refuge and my strong tower.” ~Charles Spurqeon
So wait
on the Lord. He really does hear our cries and prayers. Know that God is always by and on our side. In the end, we will all be able to understand why God placed those terrible thorns in our path, and someday we will thank God for the word “ wait
” in each of our lives.
Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst
Hi, friends, I would really appreciate prayer. Some of you already know this, but at the end of January, I started dealing with an abdominal abscess right next to my j-tube. I looked back through my records, and that was my 6th abscess. :( Since then, it’s sadly been one issue after another. I won’t go into all that has happened, but I’d especially love prayer for my j-tube site. After the abscess, I had my tube changed to a new one on 2/27. The surgery nurse practitioner decided to try the next size up to see if it could possibly decrease some of the leakage, but unfortunately, that was the wrong decision. It’s too large, so now the site is leaking tenfold compared to my previous size. The small intestinal fluid that keeps leaking out around the tube is full of acid which is burning my skin and making it raw. 😭 If you want to know what it feels like, imagine having a bad burn on your skin…then, on top of that, imagine acid being poured onto the burn every hour continuously. That’s how much pain I’ve been in, and I haven’t been able to sleep very well until after 6:30-7 AM each night because the burn is so intense! :’( I could cry, and I have—that’s how bad the pain is… I would show you a picture of the site but it’s not pleasant. 🥺 I’ve been emailing the nurse practitioner every single day, asking to have the tube changed back to the previous size. She hasn’t been helpful. I’ve tried all of her recommendations, but they aren’t fixing the root cause. I had to get an x-ray with contrast earlier today to check tube placement. If she does eventually agree to have the tube changed, I don’t know how I’ll bear the pain of the procedure… Remember, they don’t use sedation for these procedures (my GI specialist is shocked they don’t!), and even though I’ve been asking for lidocaine to be injected for past tube replacements, how do I bear to have needles pushed into such raw tissue?! 😭 Please pray that I will be courageous and strong in the Lord. I think of the verse from Philippians 4:19, and it’s comforting: “And my God will supply every need of yours according to his riches in glory in Christ Jesus.” He will grant me the peace and strength I need to be brave. His grace is sufficient. ❤️
