Another year is just about over! As I look back on these past 12 months….2013 was filled with unexpected events and a lot of “firsts” (and “seconds”). You could say this is my belated Christmas letter.. 😉 I’m sorry if this is a bit long….a lot happened this year. lol
In the middle of January, I came down with a 103.3 fever that wouldn’t break, even after taking Advil and Aleve that morning and the night before.
I took my first ambulance ride to the ER after the paramedics came to my house. I remember hearing one paramedic saying, “She’s burning up.” And still another told me, “I’m so glad your dad called us.”
My heart rate got very high (in the 150 bpm range)—the doctors had to quickly give me about 4 liters of IV fluids before things started calming down. One resident dr. told me, “You’re a troublemaker!” 😉
My labwork came back all out of whack, and I tested positive for Influenza B. The flu hit my mom and sister as well, but it was the hardest on me because of the mitochondrial disease..
The flu caused a terrible CRPS flare-up—the pain got so unbearable, and my feet swelled up. 🙁
Once I recovered from that ordeal, I had my first bilateral lumbar sympathetic block to calm the pain down. After doing LSBs for 25 years, Dr. S told me that was his first time performing a bilateral one!
In April, my parents, sister, and I traveled to Cincinnati, Ohio for the first time where I saw Genetics, Neurology, and Pain at Cincinnati Children’s Hospital Medical Center!
We spent a week there, and this is when the doctors really started suspecting mitochondrial disease.
|Met this precious little guy at the RMH! He was getting ready to have a bone marrow transplant! I know I shared this pic before, but it’s one of my favorites! 🙂|
On May 21st, my 90 year old grandma (my dad’s mom) passed away suddenly due to a suspected pulmonary embolism. :'( That was so hard, and it was the first time my siblings and I really experienced the death of a grandparent (my oldest brother was only 6 months when our grandpa passed away from a heart attack).
A lot happened in July. My 89 year old grandpa (my mom’s dad) passed away from kidney failure. :'( We weren’t expecting that, also, because he was given up to 6 months to live. As you can imagine, that was so difficult for all of us to go through two close family deaths in not even two months. We all miss our grandparents terribly.
I’m not sure if it was because of the stress, but that month, I began experiencing chronic GI issues for the first time (which are still going on today).
In July as well, my geneticist in Cincy ordered nuclear mitochondrial exome sequencing. That was my first extensive genetic test which took about 6 weeks to be completed.
But before the test could get started, our insurance denied the exome sequencing because it was out-of-network. The lab had to go through the appeals process which took an incredibly long 5 weeks! But thanks be to God and the amazing laboratory Courtagen Diagnostics, the testing did get appealed! And our insurance agreed to cover the whole cost! 🙂 In August, a caring and thoughtful family in our church let my family use their beautiful beach house for a whole week!!! That trip to the coast was much needed and such a blessing.
|Our view from the beach house. 🙂|
Soon after my 21st birthday in October, I had a second lumbar puncture (spinal tap) to check certain lab values at the request of Dr. H, a mitochondrial specialist in San Diego. I’m still currently trying to get in to see him, but this again may take several months..
Beginning in November, I started having difficulty swallowing (but not from a sore throat) and severe esophagus pain. Eating brought extreme pain, and for more than a week, it felt like food was stuck in my esophagus. For the second time this year, I had to take another trip to the ER. The doctors had me stay overnight in the observation unit as they tried getting to the bottom of this. I had a test done called an esophagram, but this revealed nothing. They wanted me to get an upper scope of my GI tract, but they referred all of this to my GI specialist here in Oregon and the motility dr. in Cincinnati.
December 1st-14th, my parents and I traveled a second time to Cincinnati Children’s Hospital Medical Center. I was admitted to the GI unit of the hospital for tests that could only be done inpatient.
|All of this was for the GI manometry testing!|
|And this is what it looked like on the computer screen. 🙂|
I also had a lot of outpatient tests/appointments with cardiology, orthopaedics, pulmonology, genetics, and neurology. Based on my genetic results, the doctors also think that I have a rare genetic neuromuscular disorder called Congenital Myasthenic Syndrome. This is on top of the mitochondrial disease.. They already started me on a cholinesterase inhibitor drug to slow the progression.
This has been a tough year for all of us, but your prayers/support and the Lord’s grace has sustained us through it all! 🙂
I don’t know what 2014 will bring….maybe it will be an easier year….or maybe there will be new trials and tests. But this I know 100%: my Lord and Savior is always always good, sovereign, steadfast, and faithful!
“Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when his glory is revealed.”
I Peter 4:12-13