“Love”-ing Life

Hey you! Yeah, you! Did ya hear the absolutely sensational news? I had a new central line placed. But wait! It gets better! Sure, I was mighty pleased that the aforementioned line was placed successfully… But – here’s the best part – even though I wasn’t exactly a walking, talking machine in so many words, I was at least a wiggling, giggling machine. My point is, guys, that I, Sabrina Giselle, awoke from surgery able to MOVE! No paralysis!

So do you want to hear the whole story? On second thought, don’t answer that. Let’s just get on with it…

Although two months have since passed, the novelty of this breakthrough hasn’t lost its glimmer; I am stillsimply overjoyed that the procedure itself and the hours following were immensely better than I ever could have hoped! The deeper sedation and slow emergence were the keys to this success. Overall, I received more than ten times the amount of ketamine used in the disastrous central line placement I underwent in February, plus propofol and plenty of versed to keep me knocked out and prevent hallucinations. This is not a protocol that would typically be considered for a central line placement, but to my amazement, my doctors said that this was perfectly reasonable given that it was the only prospect we had for avoiding paralysis and preventing an aggravation of my Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS).

Everyone involved with this procedure went to incredible lengths in order to accommodate my unique needs. The week before, Dr. Bowen, a fantastic and exceptionally compassionate anesthesiologist met with my mom and me for over two hours to come up with the ideal plan and to set arrangements in place. He spoke with a nurse anesthetist, Laura, about me, and she even went home and researched my conditions. Additionally I met with my surgeon, Dr. Molik, shortly before my recent medical trip to Chicago for a consultation so that when the time came to replace my line, all that was left to do was to give her office a call and they would put me on her schedule… And it’s a good thing, too! By the time I was wheeled back to surgery, my central line that was being replaced clearly wouldn’t have held on for even one more day. You see, after I was effectively knocked out, Dr. Molik removed the dressing on my line, and to her surprise the line fell right out in her hands! She said if I had done my typical weekly dressing change at home, I would have found myself in an emergency situation.

Following the surgery I was transferred to my own quiet little room where Laura stayed by my side for at least a couple of hours as she continued to administer ketamine so that I wouldn’t wake up quickly to a shock of intense pain! I couldn’t believe it. Really, everyone took such exceptional care of me. My post-op nurse, Claire, was ever so sweet. And there was some dude there named Spencer, and due to my mentally-impaired state at the time, I honestly have no idea who he actually was, but I do know that he was very, very nice as well. And in a fit of ketamine-induced whimsy, I declared Claire Marie, Spencer Allen, and Sabrina Giselle the three musketeers! Ah, the stuff of legend, folks.

When I finally awoke, I was surprised to discover that I had an extra appendage. In the past I have always had double-lumen lines, meaning I have had two tubes exiting the site on my chest. But when it came time for Dr. Molik to place the new line, there wasn’t a double lumen catheter to be had! Consequently she had to place a triple-lumen line instead. I was entirely nonplussed, though, because, um, hello… I WAS NOT PARALYZED! I could actually move!!!

Now, surgery is never easy on me. I couldn’t have stood up and walked out of the hospital that day… Trust me, had I not been so wobbly, I would have been doing the happiest of happy dances! But no, my muscle weakness and pain wouldn’t allow such whimsicality, but instead resulted in a short hospital stay. Central line placements are a breeze for most people, so when my nurse on the floor first saw me, she questioned, “So this is a good outcome for you?” Unless you have seen me in the hypersensitive state that comes along with my typical rigid paralysis, you simply cannot comprehend what a major improvement this is in contrast to what I usually experience when I undergo a procedure. So you can take my word that I was absolutely happy dancing in my heart.

My doctors meticulously documented all that was done so that we can recreate these exact circumstances anytime I need surgery. Overall, the whole thing was practically miraculous for me… And it was pretty much confirmation that my intense pain is indeed the cause of my rigid paralysis. So how many ways can I say it? I am deliriously delighted, entirely elated, over-the-moon overjoyed! Quite simply, God is good.

Now, what’s the latest scoop regarding my cantankerous arms, you ask? Well, I wish I could tell you that I’ve been making progress, but regrettably this is so not the case… Not for a lack of trying, though. In April I had a consultation with Dr. Lubenow, an RSD specialist in Chicago. He was a kind and intelligent doctor, but since our visit we have learned that unfortunately his hospital will not be able to offer the treatment I am needing. Nevertheless I am thankful for the advice Dr. Lubenow shared.

So where to turn next? Sometimes my shortsighted human perspective can set my mind to spinning itself silly! Naturally when I default to such a thought process I come up a bit short and haven’t a clue what to do. However, at the same time I am also earnestly praying for the Lord’s guidance, a much more effective means of finding direction, as is evidenced by God’s 100% success rate for getting me out of trouble in the past. When my family and I decided to transfer my local medical care to a different hospital a few months ago, it seemed like the craziest time possible to be making such a move; but in hindsight it is so very clear to see that God had been gently nudging us in this direction for quite a while. And as a result of that gentle nudging, I now have a fantastic hematologist, Dr. Rob, who is doing all that he can to help me from many different angles.

Thanks to the suggestions offered by Dr. Lubenow in conjunction with invaluable counsel and reassurance from Dr. Rob, my family and I finally have a tentative treatment plan for my RSD. I am a bit shocked to be saying this, but as of right now it is looking like in addition to trying ketamine infusions, I will also have an intrathecal pump implanted to consistently administer a muscle relaxant called baclofen into my cerebral spinal fluid. We believe that this multifaceted approach offers the most hope for relieving my pain and restoring function to at least my left arm.

There are still a handful of particulars to be addressed before moving forward with any treatment, so I would greatly appreciate your prayers for guidance, peace… And patience! The immense pain I’ve been carrying these past few months has been a serious test of my perseverance. I feel like I’m being stretched beyond my breaking point. So I guess it is a good thing I’ve always been flexible, huh? (Er, if we are going to be technical here, I am actually hypermobile in medical lingo.)

“… And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.” 

Romans 5:2-4

While her mommy was in the hospital, Alice Eloise was off on her own fun adventure, slumber partying it up with Aunt Krista, Uncle Tim, and Cousin Lulu.

But thankfully Alice Eloise and I were reunited at home just in time to celebrate my 23rd birthday! I wasn’t feeling up to any wild parties or anything, but I enjoyed a lovely birthday nonetheless. My “needs” have changed a lot in the past few months. Until the end of February my birthday list consisted of nothing but a ton of fabric for sewing. However, an unexpected turn of events (you know, the whole “arm thing”) would have made that a rather depressing birthday gift indeed… I was quite the one-handed seamstress, but my no-handed sewing skills are lacking (read: nonexistent). These days I am in need of pajamas and candles instead! And might I add that my family more than took care of these needs on my birthday.

Over the years my mama has observed how my heart gets to pitter-pattering for surprises, though, and she has been known to worry her sweet little mind over finding just the right way to surprise me. What she forgets, however, is that I am also very easy to please. One could easily lose track of how many times I use the word “love” each day. “Oh, I just love…Christmas trees, I just love… Tea parties, I just love… Buddy the elf”, and the random love list could go on and on. While I may say the word “love” often, I can assure you that I don’t throw it around lightly. But come now, is there really such a thing as too much love? I thought not. Consequently I believe that a loving heart is a happy heart! So one needn’t spend much time with me to learn what I like… Or “love,” as the case may be. And my mama spends an awful lot of time with me, so she has been known to pull off some highly lovable surprises.

When we were little ones, my big sister Krista and I received an American Girl doll for every Christmas, a most treasured tradition that continued until I was around nine years old. If one were to look at our dolls now, it would be easy to guess which dolls belong to Krista and which ones belong to me. Krista’s dolls are notably well-kept, with hair impeccably maintained to look almost like new. My dolls, however, might have done a few too many backflips at their imaginary gymnastic meets; the best of them were doomed to a fate of frizzy, tangly hair, and the worst of them were admitted to the doll hospital for a head transplant. Each and every doll survived, though, so what’s the harm? I like to believe that this just means they were very “loved”.

Every year American Girl designs a new doll to carry the esteemed honor of being the “Girl of the Year”. Each of these special dolls has her own unique personality sketch, and would you believe it? The Girl of 2014 is a darling blond-haired doll who happens to be a dancer and a seamstress to boot! Sound like anyone we know around here? She even wears her hair in the same style that I do!

So on my 23rd birthday, I was delightfully surprised to become the proud owner of an Isabelle doll! 

Don’t you just “love” her?!

The birthday fun doesn’t end here… Everyone’s favorite Double Doodle just turned three years old on May 22nd! My goodness, I can scarcely believe that my baby is already three! Sunrise, sunset… Sunrise, sunset… Anyone else a bit misty eyed? Anyone?

The question is how did Alice Eloise go from being this silly puppy…

To this little party animal…

To this service dog in training with a glimmer of mischief twinkling in her eyes…

To this incredible, reliable service dog?!

Aren’t I blessed that Alice Eloise has grown to be such a fine young lady? And as such, she more than deserved a special day devoted to nothing but her amazing self. Alice Eloise is the sunshine of my life… I celebrate that little lovey every single day!

Between April 17th and May 29th, my family had our springtime holiday season, celebrating Easter, a wedding anniversary, Cinco de Mayo, Mother’s Day, and 4 birthdays within our immediate family alone, 10 birthdays if we are counting cousins! Especially right now it is mind-boggling for me to think about how different my life is in comparison to the life I was living a short 365 days ago.

My parent’s wedding anniversary falls on Cinco de Mayo, so naturally I initiated a family tradition of throwing an annual fiesta!

But this year there was no fiesta. There were no chimichangas. No piñatas. No Ricky Martin. No dancing on the counters. ¡Ay, ay, ay! Livin’ la vida boring. Believe me when I say it was mildly tragic.

However, there is such a thing as too much fiesta loca, you know. Mother’s Day 2013 went down in the record books as “the Mother’s Day when the frog died, Lulu was hit by a car, and we still managed to get a perfectly splendid dinner on the table”. This past Mother’s Day, however, will forever be remembered (or forgotten), as “the Mother’s Day when we didn’t do much of anything, and actually really enjoyed it that way”.

So instead of bemoaning the capabilities and enjoyments of yesteryear that have since been lost, I am appreciating the newfound “loves” that God continually brings into my life. Heaven knows that each day manages to bring its own fair share of craziness anyhow.

You know what I’m saying? Don’t worry, be happy! Hakuna Matata! But even better than that go-to “problem-free philosophy” are the wise words of Matthew 6:34.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

Let’s just delight in the serenity of the moment and admire the captivating flower blossoms from the garden, shall we?

 On that most elegant note, I must include a special and heartfelt thank you to my daddy. When I was younger and lacking in wisdom, I typically presented him with flowers to plant for Father’s Day, not quite realizing that, in essence, the gift was a source of manual labor for the recipient. Oops. And a few years back a stroke of brilliance allowed me to mastermind a truly inspired gift, a clock adorned with those darling “Mary Poppins” penguins, along with the catchphrase “It’s a Jolly Holiday with Larry”. Original and functional.

With careful consideration I concluded that this year a stepping stone personalized with my master gardener in mind would do quite nicely. The saying “Happiness is Blooming all Around”, yet another nod to the lovely cinematic classic “Mary Poppins”, couldn’t be more appropriate. You see, my papa has planted a majestically beautiful garden just to make me happy! I have found such delight in seeing a rainbow of brightly-colored flowers come to life in my very own oasis. Even my special Charlie Brown Christmas tree that looked positively poorly not so long ago has snapped out of its gloom, and now it couldn’t be happier! Mary Who? Only Larry Poppins could build a garden so practically perfect in every way!

Like these practically perfect pink peonies, for instance! Larry Poppins does nice work, but really I must give God the credit for creating such perfect beauty.

For me, viewing my garden is as lovely and idyllic as jumping into an enchanted chalk picture. Should I be surprised, though? It is a jolly holiday with Larry, after all… No wonder that it’s Larry that we love!

I know, I know… Enough “Mary Poppins” already. Maybe I should stop while I’m ahead, but… I hope that all of my dear friends are enjoying a chim chim cher-ee kind of day! Cheerio!



Posted in Alice Eloise, Journal, Pain, paralysis, RSD, Uncategorized | Tagged , , , , , , , , , | 15 Comments
A Thankful Heart

“Sometimes we beg and plead for God to carry us through our trials, only to emerge from those difficulties and forget to thank Him.”

I extracted these words from the blog post that Sarah shared yesterday because it is such an important message … and it is all too easy to forget. But I am not guilty of this today, as I am thanking Him from the deepest place in my heart for the many blessings that He has provided this day.

I am so excited to share that Sabrina Giselle can move!!!

And the procedure went very well, too. The doctors, nurses, and anesthesiologists were all remarkable, taking every precaution to make this a success. They did keep Sarah Kate here for the night; and while she can still use lots of prayers for strength and comfort, we are most hopeful that she will be home sometime tomorrow.

I also need to thank all of you who remember Sarah Kate in your prayers and are so very kind and loving in your support. We thank God for you, also.

I am providing the link to Sarah’s post from yesterday in case you missed it because I added this one so soon after. She shares a lot of important information and the story of her most amazing friend, Jessica.

Follow this link to read her special post…

Sarah Kathryn Frey

Posted in Prayers, please! | 9 Comments
I Believe in Miracles!- A Journal Post

So. Are you psyched? Because guess what… I am TOTALLY psyched! Yesterday was a party over here at the Frey household. Isn’t it always a party, though? On this day in particular, however, we celebrated three exciting occasions. April 17th is one of my favorite days ever, purely because it is my big sister Krista’s birthday! She is a lovely girl after all, one of the supreme blessings in my life!

In 1991, the 17th of April was almost certain to be doubly special, as yours truly was expected to enter the scene on that very date. But it will come as no surprise to you that even then I had a mind of my own. To build suspense, I opted to be “fashionably late” and refrained from making my grand premiere until April the 25th. Additionally I am a pretty fair sharer now that I have had time to mature a bit, but honestly, it was probably best for all involved that I had my own special day when I was a tiny moppet.

When I launched my blog on my birthday last year, Krista shared a grouping of photographs taken over a span of many years. This panorama makes it clear to see that growing up there was no place I’d rather be than snuggled up next to my big sissy.

There may be four years and eight days between Krista and me, but we have always been as close as peanut butter and jelly! I’ve known Krista for just shy of 23 years now, and here we are, forever the best of friends!

PS Did you spot the darlingest, Doodlest photobomber?

As awesome as the celebration of us may have been, it was far and away outshone by the third honoree of the party. I am, of course, speaking of our Savior, Jesus Christ!

Christ’s miraculous resurrection that we celebrate on Easter is the culmination of God’s promise to love and provide for us always. Jesus took on the sin of the world to ensure that everyone who believes in Him may spend eternity in heaven by His side! Especially right now, my life is full of pain and uncertainties. Despite that, there is always one unshakeable certainty that serves as my anchor: No matter what the circumstances of the moment, I am a child of the One who has the power to perform miracles! And that, my friends, is something to be psyched about! So while I am absolutely praying that God may one day heal me, I am also saying a prayer of thanks… Thank you Jesus for the miracle of eternal life and for making Your place in my heart so that I may always have faith, hope, and peace!

“He Himself bore our sins in His body on the tree, so that we might die to sins and live for righteousness; by His wounds you have been healed.”
– 1 Peter 2:24

Have you been itching with anticipation to learn the details of all that transpired during my appointments with the specialists in Chicago? Here’s the scoop! The 4+ hour road trip to Chicago was extremely unpleasant for me. My full-body pain, migraines, and belly problems make even the shortest of car rides miserable. But here I am to tell the tale, so as you might have presumed, I did survive!

From about the time I was 15 to the time I was 19, my mama and I could cram all of life’s necessities (and there are an awful lot of necessities, you know) lickity-split into our teeny Volkswagen Bug and hit the road for Chicago. In those days I was doing high-pressure hyperbaric oxygen treatments at a clinic in one of the suburbs. Hyperbarics did provide relief, but for me it required frequent rounds of treatments, meaning Mom and I spent a lot of quality time together as roomies in Chicago. “The Ronald McDonald House near Loyola University Medical Center” became just like home for Mom and me. After all, we spent just about as much time there as we did at our real home.

In the community kitchen I even claimed a table as my own special spot. In a fit of silliness inspired by a particularly amusing episode of “I Love Lucy”, I deemed this table my unofficial kingdom, which I christened “Franistan”. I was the reigning royal figurehead, the “Maharincess”, if you will. I had no qualms about walking around “my House” in my jammies, with a towel wrapped in a turban atop my freshly shampooed head. And why should I have? I was the Maharincess, after all!

Her Serene Royal Highness, Maharincess Sarah Kathryn, circa 2006

 Behold, my inspiration and predecessor in goofdom, Maharincess Lucy, circa 1952

Golly, in so many ways it feels as if my days at the Ronald McDonald House were a lifetime ago. Yet when my parents and I once again walked into the House a couple of weeks ago, it felt like a time warp. Was it possible that I had really been away for four years? Not everything was the same. The people there were different. And in the kitchen… What’s this? A remodel?! To where hath mine beloved Franistan departed? Alas, my kingdom had been infringed upon by foreign furniture! And oh, for the love of Lucy, it smelled like sauerkraut! Nevertheless, this zonked Maharincess was delighted to crash in a bed that was much improved in comparison to the former model of yesteryear. Until someone, who shall remain nameless, started snoring. Ahem.

Anywho, shall we move on before I inadvertently embarrass anybody? Personally, I have always been one to save the best for last, so let’s get the disappointing tidbits out of the way upfront. While my meeting with the movement disorder neurologist was far from the worst appointment I have experienced, it could definitely be classified as disappointing. In order to streamline the dialogue of the appointment, we gave the doctor a synopsis of my health history that my mom and I had prepared in advance. At five pages, it wasn’t exactly “brief” per se, but considering that it summarized ten years of my very complicated past, one could certainly call it “abridged”. But honestly, no matter how my story is presented, it has a tendency to be rather intimidating. Right away the doctor was clearly flustered, stating that such a complex patient could never be evaluated in one short hour. He informed us that we were in the wrong kind of clinic. He had never seen anything the likes of my stubbornly fixated arms. Were we aware that we were in a movement disorders clinic? He treated Parkinson’s Disease, Huntington’s Disease, dystonia…

With me, there is a whole lot of guesswork. It is rare for me to fit the epitome of any diagnosis; so sometimes I simply have to settle for the next best thing. My arms do not resemble a typical case of dystonia. But sometimes fixed dystonia can present with my chronic pain condition, Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS).

Although the appointment had an unfortunate start, I will give the doctor credit. He proceeded to give me my allotted one-hour consultation, listening to our questions and helping us brainstorm. By the end of the appointment he seemed to have grasped just how desperately I need answers, and obviously cared, but regrettably he had nothing to offer.

I always feel a hint of apprehension preceding a big medical trip. What if I make the long, arduous journey and the whole shebang is a bust? This is precisely why I prefer to have multiple appointments scheduled when traveling to see new doctors. If one is a flop, the trip may still be salvaged if the other specialist happens to be a keeper. I am more than a little happy to report that this technique was successful, as my appointment with Dr. Lubenow, the RSD/CRPS specialist, went well. He views me as a challenge. Which is fine… Honesty is far superior to ego! Devising a treatment plan for me is not a simple task. In the past I have exhausted the majority of the treatments for RSD. Additionally, the severity of my illness leaves me in a continually precarious state; oftentimes RSD patients have an intrathecal pump or spinal cord stimulator surgically implanted, but because of my pancytopenia, particularly my low white blood cell count, Dr. Lubenow doesn’t believe that I am a candidate. This opinion has been a common consensus between all of the pain management doctors who have weighed in on my case in years past, and as much as it pains me to scratch these interventions off my potential treatment list, I would have to agree.

At this time there are almost no viable treatment options for me, save one. For a few years now ketamine therapy has held the most promise of offering relief. Ketamine is a dissociative anesthetic that works in the brain to essentially inhibit the mind from receiving sensation of pain in the body. The utilization of ketamine infusions is a rising trend in the treatment of RSD, providing much-needed relief for many sufferers.

So what’s the catch? Hm, you know how well I do with anesthesia! And as I mentioned above, ketamine is a form of anesthesia. But hey, wait a sec… There may be hope yet. As you might remember, my last central line placement gave me reason to believe that my intense pain is triggering my paralysis. My anesthesiologist used a very minimal amount of anesthesia, suspecting that the amount of sedation was directly related to the induction of my paralysis. I was very much aware during this procedure, and my paralysis did not seem to present itself until the analgesic effects were wearing off. It was only when my extreme pain came rushing back that the paralysis hit. When I recounted the incident to Dr. Lubenow, he was inclined to agree with me. He believes it to be highly likely that an aggravation of my RSD is a primary factor contributing to my paralysis.

Tomorrow is a big day, and I am in need of prayer… Unfortunately it is necessary for me to undergo surgery once again for yet another central line placement. I’m beyond disappointed that I was unable to hold onto my current central line for little more than a few weeks, but thank goodness it lasted me through my trip to Chicago. Dr. Lubenow was really helpful in developing an appropriate anesthesia protocol in an effort to avoid exacerbating my RSD any further. He is suggesting that this go-around I receive a higher dose of ketamine plus propofol, resulting in a deeper sedation and a longer emergence, so that if all goes well my body won’t be shocked with such intense pain when I wake up… And if our hypothesis is correct, I might evade paralysis, get home to my Alice Eloise, and catch my breath in time to party like a rockstar (or a Maharincess!) on my birthday a few days later.

Last week an anesthesiologist at my (awesome new) local hospital spent over two hours with my mom and me. Although upon first thought the deeper sedation seems counterintuitive, after careful consideration the anesthesiologist agreed that Dr. Lubenow’s suggestions did indeed make sense for my odd presentation. He is even going to facilitate ketamine in the recovery room to be sure I have continual pain control.

Friends, please pray that this new approach might finally do the trick! And if I respond well to this, I think we all may be more optimistic about my proceeding with ketamine therapy. I will be returning to Chicago May 14th for an appointment with Dr. Lubenow to discuss my prospects.

My loyal friends who frequently check in here on my blog have probably grown practically numb to the bizarre nature of my illness. You’ve probably learned to sit back and read, simply taking my word regarding all of this chaos. I appreciate that… Because all too often, there are people who think that because they don’t understand what is going on here, there’s no way this monster of a disease could actually be real. How can pain be so intense that it causes paralysis? Why would IVs and central line placements cause someone to permanently lose the function of their arms? This is bonkers! I admit, on the surface it appears to be just that. And in a way, yes, it is entirely crazy. But while we are so very far away from full understanding, slowly we are realizing that there is some sense behind this madness. Allow me to give a basic explanation of just what havoc Reflex Sympathetic Dystrophy is capable of.

In your mind, revisit the most intense pain you have ever experienced. Maybe it was caused by a broken bone, a surgery, cancer, labor pains, or even amputation. Such pain is all-encompassing, it’s exhausting, it’s agonizing, isn’t it? But you survived. The pain faded. Sadly, RSD sufferers cannot say the same. According to the McGill Pain Scale, RSD is the most painful condition known to medicine. And for most patients, the pain is constant and unrelenting.

RSD is typically triggered by a simple injury, such as an ankle sprain, infection, or some other form of stress on the body. But instead of causing pain that lessens with time, the nervous system malfunctions, misfiring pain signals in a persistent cycle. The patient experiences intensifying pain that is far out of proportion to the initial stressor.

True, there are some individuals who receive therapy for a limb affected by RSD and go on to be free of pain and live normally. Still there is a significant demographic of sufferers in whom RSD spreads; some of us are affected by RSD that covers our entire body, even internal organs! The manners in which RSD can affect the body are many and strange. In addition to constant intense pain, symptoms may include but aren’t limited to swelling, extreme sensitivity to touch, skin changes in temperature and color, changes in hair growth, softening and thinning of bone, dystonia, migraines, sensitivity to light and sound, seizures, and paralysis.

It is thought that RSD can even affect the immune system in some patients. This is the key factor that brings some semblance of sense to my bizarre presentation. My doctors speculate that I have always had some genetic predisposition, either mitochondrial disease or some other mutation. A bite I received at camp followed by a staph infection a few months later triggered my immune system to go haywire, leading to RSD and Hemophagocytic Lymphohistiocytosis (HLH).

The extreme pain of RSD is a medical mystery. Every second I feel as though I have electricity racing through my body, and my skin burns as if it was on fire. And conventional pain management interventions have done nothing to quench it! I don’t say this to make you uncomfortable. But I can pull off a really stoic brave face, guys. I refuse to allow my pain to keep me from smiling. But right now, I need you to see through that for a few minutes. I need you to understand how real and intense this pain is.

I have a beautiful friend who is about to help me illustrate this point. From a medical standpoint, she is more like me than anyone else I have ever known.

This is my dear friend Jessica, and her darling doggy Molly!

When Jessica was eleven years old, she developed RSD in her leg after being sick with Mononucleosis. Thankfully with treatment her RSD went into remission for four years. But then she went away to summer camp, where she was bitten by a tick and contracted Lyme disease. Her RSD relapsed, and she became completely incapacitated by pain. She went from being an A+ student who was active in tennis, lacrosse, and gymnastics to being bed-bound, unable to walk, eat, or tolerate lights and sounds because of this systemic, full-body pain. And while she didn’t have HLH as I do, she did suffer from severe hematologic issues.

Nothing offered relief. Doctors had given up on her making a recovery. It would take a miracle for her to achieve remission.

Incidentally, Jessica just so happens to know somebody in the miracle business. One day Jessica very nearly went to her Father in heaven when she had an extreme reaction during a diagnostic test. But God turned the situation around and orchestrated a miracle. When Jessica was in the intensive care unit she had a young attending physician who was from Germany, studying in the United States to complete his specialty degree. When he saw Jessica, he said, “Oh my goodness, We have cured systemic RSD back home in Germany! At my hospital, we have been doing studies using ketamine to treat this disease!” Years later when Jessica and her family attempted to contact and thank the physician who initially led them to the treatment that would ultimately save her life, mysteriously the hospital had no record of that doctor having ever been there.

You know what they say: “God works in mysterious ways.” But even more so, He works in miraculous ways. Jessica was at the beginning of a mysterious, miraculous journey.

As a last effort, Jessica and her family pursued ketamine therapy. There are currently three forms of ketamine treatments. Two of these approaches are legal in the United States, and many patients have found relief through these types of ketamine infusions. However there is a more extreme method that has been studied in Germany and Mexico, but has never been legalized in this country. Jessica was told that her only hope of recovery was in Mexico where she could undergo a ketamine-induced coma.

Really? Of all places… Mexico? Doesn’t that sound kind of scary? I’m sure that it was very scary for Jessica to think of traveling to a foreign country in order to undergo this high-risk experimental treatment, especially when she was in such a fragile state. But what was even more scary was the prospect of living the rest of her life in this miserable condition.

So off to Mexico she went. Jessica and her mom spent over two years in Mexico while Jessica underwent multiple comas. No one thought that she would actually survive. But she surprised everybody when she woke up from a coma on her own, singing! She was in remission! The coma wasn’t a magical cure; Jessica faced a rehabilitation period that was wrought with challenges. But with the help of her superb care team in Mexico, she regained her health. Now she is home with her family in Florida, studying to become a physician’s assistant!

My old friends may remember Jessica, as I briefly shared her story a couple of years ago when I too was told that my best hope was to go to Mexico for the ketamine coma. Since then Jessica and I have been in contact, and although we have never met face-to-face, she has become one of my very favorite friends. Jessica still travels to Mexico on a regular basis for follow-up appointments with her doctors; we are hopeful that someday we will finally meet, maybe even in Mexico.

Don’t freak out on me, guys. It has yet to be determined if I am a candidate for the coma. And before moving forward with such a drastic procedure, I would certainly trial the lower-dose ketamine infusions available in this country. But I have spoken with Jessica’s doctor. He is a very special man… And we all know that I need very special doctors. Coma studies are not currently underway, but this doctor has offered to see me in Mexico to better evaluate my case.

Many common threads tie Jessica’s life to my own. But even more personal than our bond surrounding our complicated battles with RSD is our sisterhood in Christ. Jessica is a remarkable young lady in many ways, but I admire her most for her faith in the Lord. She will be honest and say that through her most painful days, it was disheartening to know that God was capable of taking her pain away, yet He continued to let her suffer. But she persisted in trusting Him. Jessica’s favorite Bible verse is Jeremiah 29:11:

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Jessica never could have envisioned the incredible, prosperous plans that God had in store for her. He had a miracle of healing arranged for His very special daughter. Sometimes we beg and plead for God to carry us through our trials, only to emerge from those difficulties and forget to thank Him. Jessica, however, is shining for the Lord, allowing her miracle to share Christ’s boundless love with others. Last year she had the incredible opportunity to give her testimony before 27,000 people at the 2013 “Live Loved” Lutheran National Christian Youth Gathering! Jessica is sharing her unique journey to glorify the Lord and to further His kingdom in an awesome way. Just see for yourself!

You can read more of Jessica’s story on her blog, Jessica’s Journey.

It may seem as though a series of lucky (and not so lucky!) coincidences brought Jessica and me together. But the first time I spoke with Jessica she shared a saying with me that she learned during her time in Mexico:

“No existen las coincidencias, existe solo las Diosidencias!” — “There are no coincidences, only God-incidences!”

God works in magnificent ways, and oftentimes He does His work through people. Every single relationship is arranged by God. He knows the needs of His children, and works accordingly. I am so grateful that the Lord has blessed me with Jessica’s friendship. No one could so deeply relate to what I am experiencing. She continually inspires and encourages me, reminding me that, with God’s strength to support me, I can make it through even my most painful days! She knows… She has been there! Jessica is living proof that our God of love can and does perform miracles.

Sarah Kathryn Frey

Posted in Awareness, Journal, Pain, Patient Stories, RSD, Uncategorized | Tagged , , , , , , , | 13 Comments
Guess Who’s Back!- A Journal Post

Goodness gracious… Where to begin, where to begin? Well, for starters, it’s me… Yes, me, Sarah Kate!Alice_Eloise_Double_Doodle_Love.JPG

My mama did a fantastic job giving you an update when I was unavoidably detained thanks to the complications of my recent central line placement. I wish that I could tell you that I’m typing away on my handy-dandy iPhone as per my usual. But no; both of my arms remain disabled, so keyboards are quite inaccessible to me these days. While this hindrance kept me quiet for a short while, I most sincerely appreciate the loving and encouraging messages that have been coming my way, so please don’t think that my silence was in any way indicative of ingratitude. Your words of support bring me joy and strength everyday!

I am optimistic that no such silence will overtake me on account of my arms again. Thankfully modern technology has presented a way for me to return to my writing and correspond once again with my friends whom I love so dearly! A phenomenal little thing called ”voice control” on a snazzy newfangled device called an “iPad mini” has proven to be a great blessing these past weeks. I know the Bible assures us that God always provides for our needs. Was it referring directly to iPads? Probably not. But hey! He’s a good guy, that God, and His love and provision transcend any generation gap!

Now, I am not going to belittle the pain and challenges presented by my current circumstances. Honestly, my head is still spinning as I try to acquaint myself with this somewhat unfathomable new reality. But before I get into all of that, let’s take a few thousand steps back and I will do my best to relate the complicated story of just exactly how I have come to find myself in this predicament.

Rewind to the summer of 2010. I was having a very tough time and barely able to eat; so the overwhelmin but necessary decision was made to have a feeding tube placed. The plans to make that happen were established, but before moving forward with that intervention, there were a few other matters that needed to be addressed. I fully intended to return for the feeding tube placement a couple of weeks later. But oh my, how plans can change! One fateful June day I had a lumbar puncture, a liver biopsy, and a port placement so that I could begin IV immunoglobulin (IVIG) therapy. To put it mildly, my body revolted. When I woke from the anesthesia, I was experiencing my typical painful paralysis. The hours following were brutal. I had two IVs placed in my right arm, which is bad news for someone with my pain condition, I couldn’t breathe due to an awful reaction to a caffeine infusion aimed at relieving my intense spinal headache, and I developed aseptic meningitis from the IVIG. It was bad, very, very bad.

Worst of all, my paralysis was not wearing off in its typical fashion. I was paralyzed for a week, and it took a full month for me to regain the strength to take the few steps to walk across the room. And, surprise, my right arm has been disabled ever since. And that aforementioned feeding tube placement? Never happened. An x-ray revealed that the radioactive isotope from my gastric emptying study performed several months earlier was still hanging out in my digestive tract, a discovery that clearly exhibited the extreme severity of my digestive tract paralysis. Such dysmotiliy would render a feeding tube useless, so putting me through another surgery would be entirely foolish. As a whole, the events of summer 2010 pretty much made for the sorriest “how I spent my summer vacation” essay ever. It would be a bit spicier had I mentioned the wild and crazy incident when Mom and I had the cops called on us in the hospital parking garage. But, oh! That is another story for another time.

So now that we’ve taken that sunny stroll down memory lane, which, incidentally, is perfectly relevant here, let’s jump to February 24, 2014, the day of my recent surgery to place a new central line. My anesthesiologist, Dr. Nikiel took very good care of me. A couple years ago when she did the anesthesia for one of my bone marrow biopsies she was so very kind and conscientious, researching the do’s and don’t's of anesthesia for mitochondrial disease patients. In a similar fashion, before this recent procedure Dr. Nikiel took the time to talk with my parents and me about the best plan in hopes of preventing my paralysis. In the past I have done well with ketamine and nitrous oxide, so she decided to take this route, only she used less anesthesia than usual, speculating that perhaps my paralysis might be directly linked to the amount of medication given. Normally I am completely knocked out during these procedures, but I was very aware throughout this line placement. Dr. Nikiel helped keep my mind busy though, as we planned tea parties, discussed my desire to ride a giraffe, and tentatively scheduled a future date to get together when we are both in heaven. Actually, I came back from the procedure on a first name basis with Dr. Nikiel, henceforth known as Sydney. I may have been more alert than usual, but yikes, I was nevertheless just as kooky as ever.

Somehow I managed to make this little shindig sound rather hunky-dory, but no, I can assure you that it most certainly was not. I guess I should chime in here with the more consequential details of that day. Unfortunately the plan to use less anesthesia was unsuccessful, and actually backfired to a certain degree. I presented with my typical paralysis. I also had a unique and unprecedented vantage point of my paralysis this go-around, however. First I should mention that ketamine infusions are ranked among the most successful treatments for my chronic pain condition, Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS). My intense full-body pain that I feel every minute of every day because of my RSD felt somewhat better during the surgery! Presumably this brief respite could be attributed to the anesthetic. Interestingly enough, since I was very much aware throughout the procedure, I was able to feel the actual onset of my paralysis for the very first time. From what I could tell, the paralysis didn’t occur during the surgery itself. Rather after the anesthesia was stopped and any relief it offered began to fade away, my full-body pain came rushing back quickly and forcefully, and that was when the paralysis began. It felt like the return of my all-encompassing pain shocked my body into the paralysis. Poor Sydney. She had a most difficult time getting me out of the operating room because I was screaming in pain. It would be a shame for me to terrify the children, after all. She had to keep giving me more ketamine and nitrous oxide until the screams changed to show tunes. It was highly traumatic, nonetheless.

There was a silver lining, however. Now that I am beyond that crisis, I am grateful for the insight I gained from the incident. Before this procedure we really had no idea what was causing my paralysis. Could it be caused by the anesthesia, the pain medications, the trauma of the surgery itself? Of course we have no kind of testing to substantiate what I felt, but because of this experience we are led to believe that my RSD pain is very much a contributing factor to why I have paralysis.

I will spare you from the sordid details of the long and painful night following my line placement. Slowly my paralysis faded away until right about the 24-hour mark. I was weak, but I could walk, and I could move everything except my upper extremities. Unfortunately my progress halted then and there. My right arm been a mess for four years, so you know, whatever. But my left arm? Uh oh. Prior to my procedure I had a problematic IV in my elbow so it was necessary to place a new IV in my hand. In the hours following we had been concerned that my hand was wanting to clench into a fist and my elbow was excruciatingly painful, but we had hoped these problems would resolve along with my paralysis. However, by the time I was discharged from the hospital it was quite evident that my left arm was mirroring my right. RSD is a bizarre disease; it is not at all unheard of for an RSD sufferer to have symptoms spread from one extremity to another, forming a mirror image of itself. While my whole body is afflicted with RSD, it is very much exacerbated in my arms, and it has brought along with it severe dystonia causing my elbows to be fixed in a straight position while my hands clench into fists.

When I lost the use of my right arm nearly 4 years ago, of course it was a very big deal. It was highly disabling and difficult to learn how to go about daily life. I did, however, learn to adapt. In time I learned to sew and cook one-handed. I could still cuddle my puppy Alice Eloise, and I could throw a frisbee for her, a weighty criteria for capturing the heart of that sweet little Doodle. Naturally I hoped that there would come a day when I would be able to use my right arm, but I had gotten to the point where one-armed living had become entirely normal. But one arm is significantly more than zero arms. The morning following this recent surgery, I was hit with the harsh reality of new difficulties that I would be facing. I would subconsciously find myself ticking down the lengthy list of abilities, even the most basic daily tasks, I could no longer perform for myself. Of course sewing and cooking were out, but golly, I couldn’t even scratch my own nose anymore. And, oh my goodness! What would Alice Eloise think? It broke my heart that I couldn’t look forward to giving her a hug upon my return home.

The whole nose scratching thing I still have to figure out, but thankfully I had nothing to worry about when it came to my darling Alice Eloise. Right away she knew something was up. Dogs are quite perceptive, you know. But thank heaven I had already taught her how to give hugs! If I kneel down in front of her and ask for a hug, she lovingly places her chin over my shoulder in the most genuine and heartfelt snuggle one could imagine. And her Eskimo kisses? Oh, my heart just melts! With love like that, life is very, very good!

Really, that’s just how life is going right now. I am facing major pain and challenges, but God has been very good to compensate for the hardships with an abundance of blessings. I may not be able to throw a frisbee, but I can kick a ball! I can’t sew and cook, but I am tearing through books and flying through movies to my heart’s content. And while I can’t scratch my nose, wash my own hair, administer my IV medications, or really do any of the little necessities of my basic care, I am incredibly blessed to have family who selflessly help me each day. What do people do when they find themselves in a similar situation, but they don’t have such a support system? I mean, Mom is an exceptional nose scratcher. And Dad? He helps out a lot, and in a pinch, he can even put a bow in my hair. My family has given their all to support me these past years, and somehow within this past month they have stepped it up double. Let’s face it, I’m high maintenance! But for whatever reason, my family isn’t complaining. A simple “thank you” would not suffice to express my gratitude.

We have had every intention of getting proper treatment for my arm as quickly as possible, but it seems that nothing happens any too swiftly when it comes to such matters. Although it has taken time to attain appointments with the appropriate specialists, I haven’t been sitting idly at home, twiddling my thumbs (er, so to speak) while I wait. We have gotten into a routine in which everyday is a cycle of treatments that I can do at home. Donna, my friend Amy’s mom, has been an incredible and much-needed help, taking time out of her schedule to come to my house to develop a plan for my occupational therapy. I use a TENS unit on my arm multiple times a day. Then I cover my hands and elbow in paraffin… This is the one and only thing that actually doesn’t cause more pain when it touches my arm, and it is simply heavenly! I have also been doing treatments in my hyperbaric oxygen chamber. Have I ever mentioned that I have a chamber? Now the story behind that would make a very interesting “how I spent my summer vacation” essay. It’s far too lengthy to share here, but *SPOILER ALERT*, it involves alpacas!

I am scheduled to see a renowned RSD specialist in Chicago this coming Wednesday, and the following day I will be seen by a neurologist in the movement disorders clinic. I am praying that these doctors will be a good fit for me, and that very soon I will receive just the treatment I am needing. I wish my Alice Eloise was coming along with me, but she is still having such a time of it with her allergies, which in turn causes significant belly troubles. As much as I try to convince myself otherwise, a road trip for Alice Eloise could turn out to be a messy endeavor at this point. Not to worry, I am sure my service dog will be road trip ready eventually!

To put it simply, initially all of this madness seemed so very overwhelming. And yes, if I am going to be honest, a month later it remains plenty intimidating. But despite these feelings, I have a sense of peace and contentment I wouldn’t have thought I could muster under these circumstances. The reason being is that I alone could not muster any such serenity… But with the Holy Spirit in my heart, I have faith that I can handle these challenges. Joy is not purely a result of a person’s situation in life. Even though I have my moments of frustration, I know that God loves me and He alone knows what is best. Because of this assurance, I have every reason to keep on smiling!

“For I am the Lord, your God, who takes hold of your right hand and says to you,

Do not fear; I will help you.” 

- Isaiah 41:13

Now, of course the world does not stop spinning because I lost the use of my “good” arm. Life is just as crazy in every way, as usual. So naturally I do have a bit more news to share with you. Whenever I went to Cincinnati Children’s Hospital last May, the doctor ordered complete exome sequencing, hoping to reveal an answer to any of the complexities of my illness. We were so very hopeful that we might finally have unequivocal evidence informing us why I have HLH, paralysis, possibly mitochondrial disease… We would be grateful for any answers really! After much anticipation, my test results have finally returned. And, drumroll please, the report has revealed… Absolutely nothing! What a bummer. Because the human exome is so complex, scientists can’t even begin to understand all of the possible mutations. Everyone has some mutations, so when the testing is being evaluated, they choose a few “candidate gene mutations” that they consider as possible causes of medical issues in that specific patient. So in my case, the candidate mutations were ultimately determined to be inconsequential.

Here’s the thing about exome sequencing: If someone else were to evaluate the data, they might select different candidate mutations and find something helpful. So basically my results don’t give us a “yes” or “no” answer, but more of a “Sorry, you need to keep searching”.

That is precisely what we have been doing. Sometimes we have trouble deciding which direction we must go. And to complicate matters, because of my medical complexity, not every doctor that I would like to see wants to see me. Such rejection kind of gives me a crestfallen feeling, not at all unlike the heartbreak endured when dumped by a dreamboat. But when it comes to both doctors and dreamboats, I have learned that when I come to a dead end, God is about to redirect me down a better road.

When I began having severe hematologic issues a few years back, I couldn’t find a local doctor to take on my case. I was too old to go to Children’s, and too bizarre to go to the adult side. After much research we decided to pursue an appointment with an expert at Johns-Hopkins. I remember how exasperated we were when we received a call informing us that the doctor whom we had so diligently searched out was going to pass me along to one of his colleagues instead.

But in hindsight it is easy to see God’s fingerprints all over this situation. I happened to be passed along to Dr. Arceci, a remarkable physician who has played a miraculous role in my journey.This is Dr. Arceci. With intelligence rivaling Albert Einsten’s and a smile as charming as that of Gene Kelly, he is a very special guy!

Upon meeting my parents and me for the first time, Dr. Arceci spent four hours with us discussing my unusual presentation. He clinically diagnosed my HLH, and without that guidance I am not so certain that I would have ever undergone the subsequent bone marrow biopsy that confirmed the diagnosis. We have always been amazed that any time we email Dr. Arceci we receive a response within minutes. Of course we don’t want to abuse that privilege, so we only contact him when we truly need his input. When we spoke with him a few months back we received some exciting news; Dr. Arceci was making a switch from being the director of pediatric hematology/oncology at Johns-Hopkins to transfer to Phoenix Children’s Hospital to oversee their hem/onc department and to also co-direct major research on real-time genomics.

You know… Genomics. Like genome. Like 100x’s more in depth than the human exome. Like, are you beginning to see God’s fingerprints, too?

The work that Dr. Arceci and his team are doing is innovative and promising, offering help to a lot of very sick kiddos in need of answers. Their goal is to use genomics in order to develop safe, personalized therapy in real time specifically for pediatric and young adult cancer patients. An article quotes Dr. Arceci as saying, “We all want to know what causes diseases and how we can treat them and I think it takes a special team of people to do this and it takes a lot of unselfish commitment.”

“Unselfish commitment” describes Dr. Arceci perfectly. Out of the goodness of his heart he offered to review the raw data from my exome sequencing to search out any mutations that might prove helpful in determining any additional diagnoses and potentially the ideal treatment for me. This is no small task! It takes hours upon hours of meticulous work to review this data. Recently we heard from Dr. Arceci, and he believes he found a significant mutation. He has requested that my local hematologist send another blood sample upon my return from Chicago in order to verify that this mutation is indeed present. Soon after we will be talking with Dr. Arceci to learn the particulars of these results. He hasn’t provided us with any details as of yet, but he believes it to be an”actionable finding”. I don’t know whether this is good or bad, but regardless, it is a relief to find answers. Once I have more information, you will be the first to know!

Because of Dr. Arceci’s unparalleled dedication and vast knowledge, he is just the doctor to take on complicated hem/onc cases for patients who are unable to find desperately needed answers elsewhere. And when he brings one of these patients into this life, they can rest assured that they are in his life for keeps. I can’t decide if he is like my guardian angel or my fairy godfather, but he has so reliably overseen my care from afar! When I saw him a few years ago, however, he did make a very valid point that I also needed a team of doctors close to home working on my behalf. Because of the multifaceted nature of my illness, it would be essential for me to receive comprehensive care from different types of specialists. To get this process rolling, Dr. Arceci made the connection required for me to be followed at St. Louis Children’s Hospital by my hematologist, Dr. Wilson.

While Dr. Wilson has been very kind to me, unfortunately the collaborative team of doctors Dr. Arceci envisioned never came to be. Because of my “old age” and complexity, many doctors and nurses within Children’s Hospital have not been so welcoming, making it impossible for me to receive anywhere near adequate care locally. Because of this we have made the decision to transfer my care. It seemed so incredibly stressful to take on considering all that has been happening as of late, but the day that I saw Dr. Hanson, my new hematologist, I was put completely at ease. He is one of the most compassionate doctors I have ever met, and he has a little thing called “common sense” that goes a long, long way when it comes to medical care. The hem/onc clinic itself is unbelievable… It has a Cardinal baseball theme, so naturally that makes it a winner. There are all kinds of rooms, with games, televisions, a playhouse, and slushy machines, if you’re into that kind of stuff. Or, if you’re like me, you can hunker down in your own little cranny for peace and quiet during treatment. I will actually be able to take Alice Eloise along with me for blood transfusions, and we can just relax and watch a movie! And the staff is ever so kind, focused upon administering only the best care for their patients. Even though it is a pediatric clinic, a substantial percentage of their patient base is comprised of kids around my age! Finally, I found somewhere that I actually belong! It feels like a dream, really, almost too good to be true.

But thank goodness it really is true! Would you like to meet Dr. Hanson? It is refreshing to find a doctor with such a caring heart.

In addition to being kind, caring, and exceedingly sharp, Dr. Hanson is also very brave; he voluntarily offered to quarterback my medical team! He would have to be quite a courageous spirit to accept such a challenge. In his first couple of weeks as my quarterback he has already assembled a group of pediatric doctors within his own hospital to contribute to my care. Within a week following my initial consultation with Dr. Hanson, we received calls from palliative care, gastroenterology, anesthesia, and a surgeon to make appointments. We couldn’t be more pleased with the remarkable care I am receiving, all right in St. Louis!

As crazy as it seemed to transfer all of my care at this very hectic time, surprisingly it has proven to be perfect timing, indeed. Unfortunately I am facing surgery once again; the cuff of my brand new central line is already slipping out of place! I met with the surgeon and anesthesiologist last week, and it appears that I won’t be able to hold onto this line for more than another week or two. Sometimes people with connective tissue disorders such as my own have trouble holding onto central lines. Additionally this is the fifth catheter that I have had in the exact same site, so we are thinking it is time to make a new tunnel tract entirely and use another vein. Considering the fallout resulting from my recent procedure, I’m sure you can imagine my enthusiasm… NOT!!! But I am relieved that I have already met the surgeon so that when the time comes to replace my line, all we have to do is call and I’ll be on the schedule right away.

Phew! Time to take a breath. But wait, hold on just a sec… How can one body have so much chaos going on at one time?! I know, I know, it doesn’t seem to make a bit of sense. Really though, after you have just read all of the above, do you honestly want me to sit down and “raise awareness” about my outlandish conglomeration of rare diseases right this very second? I thought not. It does, however, warrant a thorough explanation. All in good time, my friends! I will report back soon, hopefully with sensational news regarding my appointments in Chicago, and then I will see what I can do to make my case for all the crazy going on here. But until then, toodles!

Sarah Kathryn Frey

Posted in HLH, Journal, Pain, paralysis, RSD | Tagged , , , , , , , , | 20 Comments
Overwhelmed but Blessed

Sarah’s paralysis began to pass after about 24 hours. We have seen this pattern several times now but this never gets any easier. It is so very painful for Sarah and emotionally scary and heartbreaking for all of us.

Returning home to the sweet love of Alice Eloise was an immense blessing. Those two little pups are truly lost without one another. Alice slept with Grandpa while Sarah was away but woke him in the night to go look for her, staring into her room and checking by the fireplace in hopes of finding her Mommy. Although Alice was thrilled to see Sarah, she instinctively knew that this was a time for very gentle love, and that is exactly the welcome home that Sarah received. The two cuddled and rested all evening.

This morning we are feeling overwhelmed. Once Sarah’s paralysis subsided, it became apparent that her “good” arm is now seriously impaired. She is unable to bend the elbow and her fingers are wanting to clinch up, much like her right side. We realize that we must be very proactive in addressing this as the impact is clear. We have contacted Sarah’s palliative care doctor in Cincinnati in hopes of going there because our options in St. Louis are not good. This presentation is dystonia/RSD like, and we are hoping that there may be some intervention to help.

While we sort all of this out, we are blessed, in awe, and thankful for God’s provisions. When Sarah was only seven years old, she grabbed the hands of the new girl at school as the class walked across the church parking lot to the Library. Sarah said to Amy, “let’s be friends” … and that as they say was that. Amy’s mom Donna just happens to be an amazing occupational therapist, and she has offered to come to the house to work with Sarah. Is God (and those He places in our life for love and support) not awesome!

Psalm 147:3 “He heals the brokenhearted and binds up their wounds.”

For now, because of her arms, Sarah will not be able to post on her blog or participate in social media. I am certain that this will only be temporary as Sarah is a very resourceful and courageous girl and is already finding modifications to adapt. Last night she managed to read on her Kindle, using her nose to turn the page, all the while playing a somewhat pitiful game of fetch with Alice Eloise. Even though Sarah is unable to type right now, please continue to send your loving messages and comments. She could really use the encouragement, and we will be certain to read them to her. I will try to provide updates, but I can assure you that they will be a sorry substitution in contrast to Sarah’s creativity.

This is a picture of Sarah Kate and Alice Eloise taken a few days before this hospitalization, along with the message shared on their Instagram account. I thought it was cute and a happy way to end this post.

“Happy Sunday, friends! Could you please say a prayer for my mommy? She has to have surgery to get a new central line tomorrow morning. One of the few places that I am not allowed to go with my mama is the operating room… So please pray that those doctors do a good job taking care of her while I am not around to help!”


We now must move on and work toward getting Sarah’s arm back to normal. Alice Eloise can’t wait until her Mommy is better and can again play Frisbee Fetch.

Thanks for caring and for all of the prayers.

Sarah Kathryn Frey

Posted in Prayers, please! | 28 Comments
Thanks and Praise!

Sabrina Giselle’s procedure went well (I will indulge Sarah by calling her that) but sadly she is once again experiencing painful paralysis.

Still, we count our blessings as there is always much to be thankful for.

Dr. Nikiel, Sarah’s anesthesiologist, was amazingly sweet and very attentive to her unique needs and pain.

In the past Sarah would spend the entire day on a stretcher in the out-patient recovery area only to be admitted when it was time for the staff to go home. Today she was pre-admitted so she is now resting as best she can in her own room.

When Sarah’s line needs changed out we are always very concerned that they could need to move it to the other side; but thankfully they were again able to keep it on the original side. It was during the placement of her first central line that Sarah lost the use of her right arm so we are naturally very protective of the other side and her good arm.

Sarah has received so many lovely messages from those who care about her. We are all so appreciative for your prayers and kindness.

And most of all, we have a loving God who calms us when we feel anxious and provides for our every need.

Sarah Kathryn Frey

Posted in Prayers, please! | 11 Comments
My Holly Jolly Journal — Plus a Prayer Request

As the old saying goes, “absence makes the heart grow fonder”. Considering that the past few months have been uncharacteristically silent for me, dare I ask if you’ve missed me, per chance? You have?! Well shucks, now I’ve just got the warm fuzzies something fierce.

The question is, what is it that has kept me away for so long? Have my adventures been crazy or lazy, happy or sad? To be honest there have been some hectic days recently, but life has been wilder before. And I have had some crummy days, too, but I’ve had much worse days in the past. Today, however, I intend to focus on the fun highlights that have accumulated for me to share! I will be back before long to give you an update on all of the recent medical stuff, because believe you me, there is plenty to report. But you know me well enough to realize that I take the time to recognize and celebrate life’s many pleasures; and my recent festivities warrant a post all their own, so let the party begin!

First up is my annual half-birthday celebration!


My long-time friends who go way back might remember a past post in which I shared with you the lucky break I had when my mom allowed me to play hooky from school the day I turned 11 and a half, a fantastic bit of revel-making that I never again convinced her to indulge in. Really, I still have no idea what happened to my mother’s mind that day, but I am forever grateful, because here I am 11 years later keeping the rest of the traditions born that day alive. Each year I bake a pumpkin pie (or, as was the case this year, a pumpkin cheesecake, because you know that everyone goes through a rebellious streak at some point in their life, and mine happened to hit when I turned 22 and a half). And it wouldn’t be a half-birthday party without my customary “I Love Lucy” marathon! Add a wish made with 22 and a half candles and an evening cozied up by the fireplace, and you have a very contented half-birthday girl. In my happy little world, a festive half-birthday is the perfect gateway into the holiday season!

And as the latter months of 2013 ushered in cooler weather, they also brought oodles of fun! You won’t be surprised to learn that I don’t shy away from the unparalleled opportunity to cook a humdinger of a feast that is only appropriate on one day each year. Typically I begin my Thanksgiving meal preparations several days in advance, but this past year I had a bunch of commitments elsewhere the week before zero hour approached. Despite an extended hem/onc appointment that sopped up most of my waking hours on the eve of the holiday, I managed to return home and bake three pies and three loaves of bread. And on the big day I donned my darlingest pink polka-dotted apron a la Donna Reed as I whipped up an idyllic Thanksgiving feast as if it were 1950′s television magic. (It’s our little secret, but I’m exhausted just thinking of such magic!) My favorite moments of the holiday, however, were those spent with my family whom I love so much. I think they found the food to be highly palatable, but if they didn’t they put on some believably brave faces. Either way, I am oh so thankful for the lot of them!

The day after Thanksgiving I was moving on to my favorite season: Christmastime!!! What did we do first? Alice Eloise threw on her service dog vest and sniffed out the perfect Christmas tree!

They say that Christmas is the season when dreams come true. I’m not sure who “they” are. And really “their” aforementioned philosophy is of my own devising, but I know it to be true that fantastical dreams can become a magical reality. Some little girls fantasize about becoming a princess. While I wouldn’t turn down the chance to gain royal status and the wardrobe to match, if I had my druthers I would wish for a sweet little evergreen tree of my very own so that I would have a bit of Christmas cheer in my yard the whole year round.

So guess what! We planted a tree!!! (And when I say “we” I mean “they”. Sadly my one-handed tree planting skills are nonexistent.) My sweet tree is rather reminiscent of a Charlie Brown Christmas tree. Isn’t it charming?

I am feeling slightly worried because this past week we have noticed that my darling tree is looking a bit sickly. I grow very attached to my Christmas tree each year. And being my silly self, I’ve been known to talk to my tree. You can imagine how fond I am of my special year-round Christmas tree. Golly, I sure hope it pulls through!

Anywho, our first snowfall of the year happened to make its appearance on St. Nicholas Eve! Snow is a most magical, sparkly delight. Most of my winter days are spent contentedly indoors as I cozy up by my beloved fireplace, and a sprinkling of snow out the window is the perfect finishing touch. But it occurred to me that my sweet Alice Eloise had never been given the chance to play in the snow! So on a windless day we bundled up and trekked outside for a quick snowy frolic.
What a blast we had in a few short minutes! Alice Eloise found that snow gives her the perfect leverage for a rockstar game of frisbee fetch. Who knew?

Still, once that glittery snow turns to gunky slush, the great outdoors doesn’t hold quite the same appeal as the winter wonderland that is entirely unique to my bedroom alone. I have a vivid memory flashing back to when I was fourteen years old, writing thoughtfully in a notebook under the heading “Christmasy Plans”. I remember writing: “Everything not related to Christmas must go. Either that, or tie a red ribbon around it.” I was on a mission to transform my room into a magical world where even Buddy the elf himself would be in awe… You know, just in case he happened to show up with an engagement ring in hand. I just know he would appreciate my affinity for elf culture.

I’m not sure that my mom knew what she was getting herself into when she agreed to support my vision. Years later she informed me that she had felt kind of sorry for me. It had been a rough year for me trying to adjust to being a “sick child” and all that. Surely a bit of extra Christmas cheer was just the ticket!

“A bit of extra Christmas cheer” would be a major understatement. By the time I had finished decorating, there were over a thousand Christmas lights in my bitty 150-square-foot bedroom! I was so thrilled with my achievement, I tried to sleep with all those twinkling lights on, a failed attempt not only because of the brightness, but also due to the fact that it felt something akin to sleeping in an Easy Bake Oven. But when my constant migraines moved in a few years back, all but a few mellow strands of my beloved Christmas lights moved out. I must say that somehow my decor lost none of its festive charm; in fact, I believe it is even merrier than before! As striking as the lights were, upon first sight a person might have been inclined to take a step back for a moment or two. But now my wonderland has a welcoming aura about it that makes one want to enter into the enchantment; why not stay for some figgy pudding and cocoa while taking in the surrounding pizzazz? Shock factor isn’t everything, after all.

In years past I quite enjoyed the intense exhilaration surrounding the Christmas season. Yes, I was that kid who was totally hyped, waking up the rest of the family at the earliest acceptable hour which happened to be long before daybreak so that we could open our presents. Sugar cookies had me continually buzzed as I attempted to beat my previous record number of viewings of the film “A Christmas Story” within a 24-hour period. I am grateful to be able to tell you that despite my overzealous behavior, I grew up in a home with parents who were able to channel the hype in such a way that I was always more pumped about my Savior’s birth than anything else.

But now I have come to appreciate the peace that whispers through the Christmastime bustle. It seems that in the days leading up to the holiday everyone is whirring about trying to accomplish each task on a seemingly endless to-do list. Circumstances being what they are, in recent years I haven’t been up to doing much “whirring”, but altogether I think it has improved my outlook and promoted a grateful spirit.

This year I enjoyed what was in my estimation a perfect Christmas. Krista, Tim, and Lulu showed up early for Christmas breakfast. And according to tradition we all wore our jammies! (In fact, wearing pajamas all day has become something of a daily tradition for me. No shame in that!)


My childhood Christmases were full of merry memories made at my aunt and uncle’s house with my cousins. This year I was delighted to have my Aunt Janet and Uncle Richard over at my house for Christmas dinner!

Isn’t it convenient that we happen to celebrate Christmas at the end of the year? The awesome realization that God, the Creator of the universe, loves me (and you!) so much that He stepped down here to planet Earth to make the ultimate sacrifice necessary to redeem us so that we can spend eternity in heaven with Him… Wow! Nothing else could make me so short for words! As a young lady with complicated and mysterious chronic illnesses, His love is my source of comfort and hope. Don’t misunderstand me, I absolutely love my unique life! But my daily pain gives me extra enthusiasm for the home that is waiting for us in heaven. I will have two functional arms, and bonus, I will be able to eat! Do you think Jesus would mind if I carry around a blueberry muffin in each hand my first thousand years in heaven? I think it is human nature to take some moments of reflection at the completion of another year. Whether 2013 was the greatest year ever or one you would rather forget, the Christmas message brings such a lot of comfort that God loves us and has everything taken care of.

“And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.”
Romans 8:28

2013 didn’t bring healing for me, but I have come to expect that even in my most difficult moments, I can trust that God has a blessing ready anytime. When I think over the past year, I am so very thankful for the most striking gift of friendship! The Lord has brought such a lot of amazing people into my life who have given me all sorts of joy and inspiration.

These remarkable friends have inspired me to strive to be the best me that I can be. I don’t so much have a resolution for 2014; sometimes life gets so crazy, I can’t always predict what I will or won’t be able to accomplish in a given timeframe. But I do have a simple goal that I hope God will help me to achieve. For years my family and I have continually searched for answers and help for me. Sometimes my ideas can go in so many directions that my mind just reels. This year I would like to focus some of that energy on helping others somehow. I am hoping that with thoughtful and prayerful consideration God will help me discover a purpose in which I can make a beneficial difference for some of the people and causes that have touched my heart.

After reading this post entirely devoted to holidays, would you feel gypped if I don’t give you the scoop about a romantic Valentine’s Day to spice things up? Take comfort in that my lack of lovey-dovey content could not possibly leave you feeling more romantically gypped than me; but it just so happens that my Valentine’s Day was full of unconditional love, even if I have yet to stumble upon a charming, witty young man with the handsome bone structure of Gregory Peck. If you happen to bump into such a guy, feel free to send him my way. In the meantime, take a gander at my valentine, and I think you will agree that I have no reason to pout!


I hate to clutter up all this fun with a bit of medical drama, but I am in need of prayer right now. This past September I was admitted into the hospital with fevers and dropping blood counts when my central line had a bit of “greenish gunk” at the exit site. It was suspected that I had an infection in the tunnel tract around my line, but thankfully a weeklong course of IV antibiotics seemed to take care of it.

But I’m afraid that this line’s time is now coming to an end. Last week my chest was aching at the site much more than usual. We came to find that my line has partially slipped out of its exit site, with the cuff aimed at securing it in place and preventing infection now on the outside of my body. In hindsight we realize that this malposition began back in September, which likely caused the minor infection.

I will be having surgery to replace my line in the morning. As many of you know, there is no such thing as a “simple procedure” with me. I almost always experience highly painful paralysis in the hours following. This time we are being proactive and I am being directly admitted so that I can avoid a long day spent paralyzed in the PACU until someone can find me a vacated room. I will also be having one of my very favorite anesthesiologists, Dr. Nikiel! She is very nice, and calls me “sweetheart” and all that. Still, I could really use your prayers… This guy is my surgeon:

Kidding! He is a very nice fella, but all of that makeup would most certainly be frowned upon in the operating room. But even so, please keep me in your prayers tomorrow!

Sarah Kathryn Frey

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