To Katya. Happy 10 years!

As photos flash across my newsfeed of freshmen entering my old university, I see bright, jubilant faces glowing with unspoiled optimism and hope. As I glance through the sea of unfamiliar figures, I cannot help but reflect back to my first week at university.

There was a knock on my door. My roommate's good friend from an upstairs dormitory room was at the door. Upon opening the door, there standing with my roommate's friend was another girl...a girl who looked like she desperately needed a friend. My first few memories of meeting someone are often forgotten...but you, Katya, I so vividly remember meeting! I remember you looked so lost, so frazzled and so in need of someone to show you around campus. I was eager to team up with you. I thought, "Oh, what a good friend I can be to this girl." What I never figured into our relationship was how much I needed you! Less than a year later, you saved my life! (Thanks for all the hospital visits and for getting me back to campus!)

As I reflect back on all our university adventures, I see us dancing on the beach, shopping at the grocery store and watching numerous sunsets together. You were always eager to go to the beach. I reluctantly often went with you...and I am so grateful for all the memories we made. You were always quick to spot a flower...and of course we had to stop and take a photo. Now, whenever I see a flower, I often stop to admire its beauty and to think of you. "Wow, this is such a pretty hibiscus. I know Katya would have taken a photo of this flower."

It has been ten years since we first met, and I am so grateful for our friendship through all these years. Although our lives are quite different from what we had ever imagined, I am so glad God made our paths cross. I am glad that fateful day so long ago, God sent such a special person to my dorm room door. Cheers! To the next ten years!

Trading My Sorrow...

Eight years ago, as I was struggling to find answers to my downward health spiral, I met one of the most influential people of my life. A bright, bubbly young girl, who had very similar health symptoms as my own, was a frequent visitor to many of the same chat rooms I visited. Her screen name was "Trading Sorrows". I always assumed her screen name meant she would trade sorrows with whomever she chatted with. One day while visiting a chat room, I read on her signature line an explanation of her screen name: "I'm trading my sorrows for the joy of the Lord." Instantly, her screen name had so much depth and meaning. My dear friend never "traded sorrows" with anyone. Instead, she was always a ray of bright light when our health often failed us. I always wanted to ask my friend about her screen name. How did she come up with the name? Was there any other meaning to the name? However, we never had that conversation before she passed away nearly two years ago.

This week, I discovered an amazing preacher online. Intrigued by his YouTube videos, I decided to visit his family's ministry page. On the homepage, there was a beautiful video message by the preacher's wife. The family had endured financial and legal hardships which destroyed their ministry. Now, the family was again trying to rebuild their lives and their ministry. In the middle of the video, the wife mentioned a song which helps her get through the tough times. "There is a song called Trading My Sorrow which has the lyrics, 'I am pressed but not crushed; persecuted not abandoned; struck down but not destroyed...'" I abruptly stopped the video. "Did she just say there was a song called Trading My Sorrow?" Instantly, I thought about my friend's screen name. Immediately, I clicked open a new webpage and searched YouTube for the song. In a split second, the song, Trading My Sorrow, popped up on my screen.

As I listened to the lyrics, I nearly started crying as I thought about my friend. The song began: "I'm trading my sorrows; I'm trading my shame; I'm laying them down for the joy of the Lord." This was the answer to my questions about my friend's screen name! Oh, how joyful and grateful I was...I am for this knowledge. I dearly miss my friend and to learn one more thing about her life on the almost two year anniversary of her death is ever so precious. Additionally, the song lyrics continue with what I have been trying to do for so many years: "I'm trading my sickness; I'm trading my pain; I'm laying them down for the joy of the Lord." The song resonates deep within me. I imagine my friend listening to this song as she endured a hospitalization or a bad day of health. Just listening to the song feels as though I am sharing in one last memory with my friend.

As if all this was not enough, God gave me one more sweet blessing. My church has hundreds, perhaps thousands of songs which it can choose to sing at its services. As I looked at this week's bulletin, the third song during service was Trading My Sorrow. As the congregation sang the song, tears sprang to my eyes; it was as if they were singing one last tribute to my friend...my friend who was always full of the joy of the Lord.

A ray of hope in the midst of trepidation

Fear and foreboding take hold of my soul. I have been sick for many months with respiratory infections, and now finally treatment may be in sight. But, of course, I must undergo another procedure. Tomorrow is just another day, another day to have a bronchoscopy. How many have I had? How many of these procedures have lead to pneumonia? How many have gone badly because the procedure was done without sedation?

I want to be cheerful; I want to be joyful. But the medical memories from these last seven months swirl in my head. Tomorrow I will be at a new hospital with different medical personnel and with a different doctor. As much as I try to remain optimistic, I do not like change. I like knowing the nurses and doctors. I like knowing my surroundings. There is a comfort in the familiar. But, tomorrow, I must be brave and endure new faces and new landscapes. I try to push aside the apprehension and pray this procedure will help get me on the road to a life free from respiratory tract infections.

As my spirit has been heavy within me, God has graciously sent words of comfort and hope into my life. Feeling as though my blog has hit a roadblock (and thinking about not writing anymore posts), a woman I do not know reached out to me on Facebook. I have posted a couple times links to my blog this last year on a Facebook group for people with mitochondrial disease. Although I have not posted in several months to the group, a woman found my blog link as she searched the site after her best friend lost her son on Sunday to mitochondrial disease. The words this woman wrote to me about how my blog has helped her understand Mito and the experiences one must endure when fighting this battle brought tears to my eyes. Her words were sweet nectar to my soul, giving me renewed strength and hope that perhaps there is a reason to continue writing, to continue maintaining this blog. I have always told myself if this blog can help one person, I will keep on writing. Again, when I was almost ready to quite, God gave me a gentle reminder that my work here is not yet finished.

As I prepare to endure this procedure tomorrow, it is humbling to think I have another opportunity to let God's light shine forth. Whatever tomorrow brings, what comfort it is knowing God will be there...and perhaps one more blog post will manifest itself from tomorrow's experiences, and perhaps one more person will find comfort from this blog. Good night and God bless!

Climbing a mountain, just to be pushed back down (again)

As Mitochondrial Disease continues to challenge my life, one area that has continually been affected has been my vision. For years, I have been in an epic battle to get the correct eyeglass prescription. When I abruptly could no longer see my computer screen without developing a severe headache and feeling as though I was going to throw up from double vision, I decided in October to get an eye exam. That eye exam was...not really an exam at all. The doctor freaked out when he saw I used a wheelchair and needed a ventilator to breathe. I was pushed out of his office without ever getting an eye exam. Being completely defeated, I sought a referral from a friend to see her eye doctor.

Today, I was so hopeful. My back, neck, head, right eye and right side of my face have been plaguing me with severe pain. Today, perhaps, I would get an eyeglass prescription to be able to see text and other near items. The doctor was very kind but seemed to dismiss my concern that I cannot see close-up. She suggested I get cheap reading glasses from the Dollar Store, but she completely seemed to miss the fact that I have significant double vision. Cheap reading glasses will not fix the double vision or the abundance of symptoms associated with the double vision. Moreover, she never tested my near vision.

Perhaps I was too complicated of a case for this doctor. She told me to follow up with a neurologist, and the neurologist would help with my vision. This is quite comical because I have in the past mentioned my vision difficulties to my neurologist, and the response is always the same: "Go see your eye doctor." I guess the good news is that the eye doctor told me to follow up in two years. Wow, I get to grapple for two more years without being able to see close up. How exciting! (Insert sarcasm here!)

So the struggle to see, and the search for relief from these never-ending symptoms continues. If anyone has suggestions or recommendations, please let me know. It would be such a blessing to be able to see again.

Tom: A girl's best friend

It is Sunday morning. A kind, dear man patiently greets folks as they enter church. He always is full of stories, especially fish stories, and is always quick to give you a bulletin. As service starts, Tom looks out the church front doors, scouring the parking lot for any late comers. As usual, a girl in a wheelchair with a ventilator arrives 10 minutes late. Of course, as soon as Tom sees the girl, he quickly props open the front doors and hurries down to meet her.

This is my friend Tom. We met several years ago when I first started attending this church. Tom and I have a special kinship. I sincerely look forward to seeing him every Sunday and am sad if for some reason our paths do not cross. Tom always makes me laugh. He always has some funny remark or entertaining story to tell me. He sometimes gets me in trouble.

One morning, Pastor was in the middle of his sermon when Tom slipped a comic strip cartoon into my hand. Of course, I wanted to oblige Tom by reading it. So I quickly read the captions. And what a mistake that was! The comic strip was about fishing and was absolutely perfect for Tom and his love to hook fish. When my eyes lighted on the last line of the comic strip, laughter erupted from my throat. Of course, it was perfectly timed when there was a pause in the Pastor's sermon. I was too embarrassed to look up to see if anyone was staring at me. Instead, I kept my head down for the rest of the sermon, trying not to be noticed.

Tom always makes sure I have someone to push my wheelchair to go to Sunday school or to push me out to the car. If there is no one to help me, Tom eagerly steps up to the plate. I always enjoy Tom's help. He fusses about everything and always makes sure I am properly loaded up into the car or situated in Sunday school. With Tom, I always receive 5-star service.

So, this is Tom--a kind, gentle soul who always puts a smile on my face. I am so glad God has made our paths cross. I am so glad to be able to call Tom my friend. May God richly bless Tom and his family.

Bloom where you are planted

As I gaze at the calendar, I wistfully remember that ten years ago I started university. Oh, the memories which flood my mind of joyous celebrations, grand adventures and never-ending studying! My time at university was the happiest years of my life. As I scroll through my Facebook newsfeed, I see friend after friend living their dreams--family medicine, OBGYN, vascular neurology, pediatric pulmonology, rheumatology, etc., etc. It is surreal to think that despite my best efforts, God had a different plan for me. Despite my best efforts, my dreams have remained dreams.

At church on Sunday, the Pastor's sermon included the theme, "Bloom where you are planted." Wherever you find yourself, you are to be the best person you can be and allow God's light to radiate forth from you. This concept has often streamed through my head. As much as I desire to be on the other side of my medical case, I must be content--I must shine forth--while sitting in the hospital bed. With each person who comes through my door, I have an opportunity to be the light in the room. I have the chance to share God's love with the medical community.

Interesting things happen when you decide to bloom where you are planted. God uses you in special ways. Since days and nights are often long in the hospital, I often read lots and lots of Scripture. Many times, my nurse or respiratory therapist or even my doctor will ask what I am doing. "Oh, just reading the book of Isaiah from the Bible." Two things happen: either the person becomes very interested and askes me questions about my favorite verse, or the person suddenly becomes very uncomfortable and wants to run away. Whatever the outcomes of these encounters are, I know God is working in their hearts.

As much as I desire to be anywhere but in the hospital or to be anyone but the patient, I know God has placed me where He needs me to be. I must take great joy in this and allow myself to be watered daily with His Word...to allow myself to be the bright ray of hope in a medical system which is often plagued with dismal news and is filled with much sadness and sorrow. As much as I would love to be a flower in the midst of medical professionals solving other people's medical challenges, I must bloom where God has chosen to plant me...even if that means I will perpetually be a patient.

"Trust in the LORD with all your heart, and lean not on your own understanding. In all your ways acknowledge Him, and He shall direct your paths" (Proverbs 3:5-6).

Hide and Seek

Ever since I can remember, I have always liked to find things. This has been extremely helpful having two parents who always seem to misplace items. Car keys, house keys, phones, glasses, pens, pencils...you name it, my parents are able to lose it. When I was a child, I always thought it was an honor if my parents asked me to help them find something. As I grew older, their pleas for help continued.

One time when I was at university, I received a phone call from my mom. "I lost my glasses. Do you know where I put them?" I instantly burst into laughter. Was my mom serious!? I had not been home in many months. How was I to know where she left her glasses. Wanting to help, I asked my mom where she last had them. "I was wearing them and then I took them off because I had to change shirts. I have not seen them since." Immediately, I told my mom to look at the end of her bed and smooth out the covers. She probably had placed them at the foot of the bed when changing shirts, and they probably slipped into a fold in the comforter. My mom was gone for 10 seconds. She then happily returned to the phone and replied, "I found them! They were right where you said they would be!"

During Christmas this year, a similar story occurred. I came out to the kitchen to eat a snack. I found my mom frantically searching for something. I knew this was my cue to help her out. I asked, "What are you looking for?" My mom replied, "The iPad. I just had it, and now I cannot find it." I immediately started searching for the iPad. I did a quick search of the living room and did not see it. I then glanced about my mom's bedroom but did not see it. I returned to the living room. My mom then went to the utility room to do some laundry. I started thinking about what my mom had just been doing. I saw some documents, which my mom had been looking at, were laying on the couch. I picked up the papers, and behold, the iPad was sitting on the couch, hidden beneath the sheets of paper. Quickly, I placed the iPad prominently on the table next to my mom's recliner. I then silently scampered off to my room.

After my mom finished her laundry tasks, she returned to the living. Instantly, she saw the iPad laying next to her recliner. She then hurriedly scurried to my room. She burst open my door and exclaimed, "Where did you find the iPad!?" In as innocent of a tone as I could muster, I replied, "Why it's a Christmas miracle! The iPad has been found!" I immediately burst into peals of uncontrollable laughter. My mom was very frustrated with me and kept demanding to know where I had found it. When I was finally able to regain my composure, I divulged where I had found the iPad.

I often think to myself it is a good thing God blessed me with the ability to find things since I have two parents who have been blessed with the ability to lose things. Together, we make quite a team! Oh, I have to go. I hear my mom calling...I think she lost something and needs my services. Off to play another game of hide and seek!

Many thanks for the abundant blessings!

My heart overflows with love and joy as I read the plethora of well wishes and kind messages. Thank you to everyone who has made this such a wonderful New Year! For much of 2017, I have been eagerly waiting for this day. With each test, medical procedure, hospitalization and doctor's appointment, I would encourage myself that New Year's Day was only "x" many days away. I was bound and determined to see another year.

My optimistic wish for this year is to not have any doctor's appointments or hospitalizations. This, however, is just a pipe dream. I already have four doctor's appointments scheduled, and most likely will be back in the hospital very soon. My one gift I did give myself was disobeying my doctor. I have had a respitratory tract infection since July. In December, this infection flared up, resulting in me being hospitalized to receive IV antibiotics. Upon discharge, I was switched to oral antibiotics. Very quickly, the pneumonia came roaring back. My doctor switched me to a different antibiotic and said if I did not improve in two days, I needed to go back to the hospital. My symptoms did not improve. Instead of going back to the hospital, which would have likely resulted in me being hospitalized over New Year's, I have patiently endured the infection and told my doctor I would seek medical attention after January 1. Now, it seems, I must reluctantly live up to my side of the agreement. As much as I dislike being sick with pneumonia, the thought of stepping back into the hospital really saddens my heart.

With all this said, my realistic wish for this year is to be healed from this respiratory tract infection.  I also pray the pain in my kidneys soon disappears, and my flaring pancreas calms down and will allow me to eat again without becoming very ill.

Thank you all for being part of my life. It is such a blessing to be overwhelmed with love and joy on this special day!