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.
Hi, friends, First off, the piece of art above was hand lettered by me last year before all “this” happened. I’m sad to say that I only have 3 or 4 pieces left to share until I run out.. 😢 I went to see my neuromuscular neurologist in Seattle on January 8th. My neck weakness continues to progress which has been so scary. He said I need to get a neck MRI and some specific blood tests to check for polymyositis. If it is normal, though, his opinion is that this is mitochondrial disease progression. 😔 I haven’t seen my mitochondrial specialist in San Diego in more than 3 years (I started seeing him in 2014!), so I’m sadly no longer considered his patient. The neurologist sent a new referral to him, but I’m not sure if it will be accepted.. He’s almost 80 years old (one of the pioneers of “mitochondrial medicine”). And I don’t know if he’s cutting back on “new” patients.. Even if he did accept my case again, I’m currently not physically well enough to fly down from Oregon.. 😞 My quality of life continues to worsen ever since this unusual neck weakness started this past October. I know I’ve said this before, but I truly miss doing all of my favorite things (like hand lettering art) or even simple tasks (setting up my own IV infusions, vacuuming, washing hair, etc.). 🥺 Before October, I was even starting to drive to physical therapy or the grocery store. Yes, I’m 32 and still don’t have my driver’s license due to being preoccupied fighting mitochondrial disease for almost 15 years now. I never shared the exciting news that I was able to get my driver’s permit over 2 years ago, and it was so fun to drive myself to appointments close to home. Now, I can’t do any of the above which has been difficult to process. I shed tears every now and then just thinking about all that has changed. 😢 I’m having to go to bed around 6:30 PM to lie down and rest my neck. But I’m so uncomfortable from the pain, and I don’t fall asleep until after 3 AM every night. So my pain dr. referred me to palliative care. 😢I know it’s not hospice, but I’m still sad we’re at the point where I even need palliative care. Unfortunately, they’re most likely going to deny the referral (if they haven’t already) because we were told they only see cancer or heart transplant patients. I even checked if there’s palliative outside of OHSU, but they, too, see only oncology. It’s so hard that cancer gets a lot of funding, research, and support, and those with rare diseases are left “on their own.” It’s isolating and lonely. 🥺 I saw my PCP again, and he is just the best and full of compassion. ❤️ He placed the neck MRI as urgent and also ordered more labs to keep pursuing answers since all this is such an atypical picture if it was mito progression.. In case palliative turns my case down, my dr. told me that the internal medicine clinic has a complex and chronic pain management clinic (different from the pain center that I’ve been going to since 2011). He referred me to them to try and help me get more comfortable. I have a wonderful team of doctors and an amazing naturopath, but I’m even going to see a functional medicine doctor for the first time on the 23rd. Praying he could maybe have some additional insight on everything and will offer some fresh ideas for treatment as well.. I also have an appointment with the metabolic geneticist on the 28th.. I’ve read through the Bible more than once, but it’s amazing how the Lord points us to specific verses at just the right time. I don’t know about you, but sometimes I think, “I don’t remember reading this before!” Paul David Tripp’s newest devotional Everyday Gospel has been so very encouraging. He shared 2 verses from the book of Genesis where Jacob said that God “answers me in the day of my distress and has been with me wherever I have gone” (35:3). Several chapters later, Jacob also said that God “has been my shepherd all my life long to this day” (48:15). When I read that, I felt such peace. God spoke to my heart to remind me that He is with me and for me….in every circumstance no matter how hard. ❤️ Could you please pray that I can have the MRI completed this month and not have to wait many weeks? Pray that all of my doctors will have wisdom as my case is so complex. Lastly, could you pray that I will persevere and keep walking by faith? I feel so weary, not only physically but also mentally and spiritually. 😥 Thank you so much for praying for me all these years. ❤️
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
“Be still, and know that I am God.” -Psalm 46:10
