What My 'Cranky Panky' Taught Me About Emergent Care

I seriously wish I were one of those folks who have a talent for writing short, concise little snippets as they blog, but honestly my life is full of all kinds of word-worthy events that I have trouble condensing. Please bear with me...I pray that at the end of this entry, you will end up with a healthier outlook on what is going on in your life, that you can glean some sort of benefit from my experience, and most of all--that you will see the hand of God working in all of our lives as we walk this journey called life together. Okay, so here we go...

In ER with Acute Pancreatitis

August 24, 2019

About a week ago, I found myself doubled over in pain, asking my husband to take me to the emergency room at one of our nearby hospitals. Knowing that it is something I'd never do unless someone was holding a gun to my head or--as in this situation--something I promised my doctor I would do in order to have proper documentation of a suspected Chronic Pancreatitis diagnosis, Gary grabbed his shoes and his keys, and off we went! Sure enough, the diagnosis--Acute Pancreatitis, with Lipase levels well over 5 times the normal limit.

May I step back in time a moment to explain my promise to a doctor to go to the emergency room upon my next bout of severe abdominal pain? You see, this pain is not new to me. I have been having bouts of gripping, incapacitating, unbelievable pain every few weeks for about 4 years now. I have mentioned this to multiple doctors (including 3 different gastroenterologists) and every single one has asked if I have gone to the ER during the attack. My response has always been--"well, no--I am incapacitated. As in dripping sweat, unable to speak, doubled over in pain incapacitated. For better or worse, I have always prayed, stayed mentally calm, telling myself, 'it will get better in a minute', and eventually--it always has! So no; no ER". And then each and every doctor told me they didn't know what it was, but I shouldn't worry too much because it has always (they thought) historically resolved on its own.

Several months ago, for whatever reason, I was tested for a special antibody called Anti-GAD65 antibody, a test which can diagnose Autoimmune Diabetes, Stiff Person Syndrome, and positive results have sometimes linked neuromuscular disease such as Myasthenia Gravis, with an underlying cancer. When I discovered that my test was positive, I was overwhelmed, my mind reeling. On the other hand, God was making His loving presence evident, reminding me with every breath I took that my life...my times...are in HIS hands. A couple of months later, the doctor decided to repeat the test and it was confirmed--I had a positive Anti-GAD65 antibody test with a very high titre.

As I sought help to find the source of the antibodies, I realized that no one really knew what to do. In the meantime, I started Plasmapheresis treatments, which helped me arise from the downward spiral of deteriorating health. I am pretty sure I have  written about this miraculous treatment in earlier posts, so I will refrain from going into detail now. Anyway, I had a follow up visit with my neurologist in May, who insisted that I absolutely MUST have an MRI done on my pancreas due to a connection she'd observed in a couple of patients in her clinic between highly positive Anti-GAD65 antibodies and pancreatic cancer. Because I trust my neurologist implicitly, I complied and had the MRI done in late June. I received the results, which were abnormal, from the head of the pancreas to the tail. In short, the entire pancreas was involved with atrophy, damage, lesions, cysts and a dilated main duct. I took the results to my gastroenterologist in early July, who downplayed them, while at the same time mentioning a possible future referral to a pancreatic clinic he knew of. When I asked if he would go ahead and refer, he said he didn't feel I need such intensive scrutiny and care just yet. Something about that just didn't sit well with me, and sort of nagged at my brain for a couple of weeks. I decided to advocate on my own behalf and made a self-referred appointment at that clinic.

When I arrived, I saw an extremely intelligent, professional and knowledgeable PA, who instilled immediate confidence in me. She made no statements about anything; rather, she asked me to share my story with her. As I voiced the history I just shared with you, also adding that I had felt dismissed by most doctors, I saw multiple "aha!" expressions cross her face as she listened intently and took extensive notes. Like all the other doctors I'd seen she asked if I had ever been to the ER and I said what I have always said..."No"...and gave the reasons why. Her immediate response was, "'Don't do that anymore!' The next time this happens, you MUST go to the ER!" And then she thanked me for my openness and honesty, indicating that my story shed light on what my MRI images were saying. The entire team of doctors in this pancreatic clinic was baffled by what they saw because there was no documentation whatsoever of me ever having had pancreatitis. But she compassionately told me she knew I wasn't making anything up, she believed everything I told her, she knew I was in pain, and that it was NOT in my head. She then went over the most concerning aspects of my MRI study (which my regular GI doctor had glossed over). As I noted above, the report isn't good. Our visit ended with her promise to me that I would never be dismissed about this again, if she had anything to do with it! I left feeling blessed to have followed my God-given instinct and validated that what I was experiencing was, in fact, not "all in my head".

Okay, so fast forward to last Saturday. The attack, so similar to all the others I had over the past few years (though not quite as severe), gave me the much needed documentation that I indeed have pancreatitis. The hospital in question, however, gave us the choice to go home, in spite of my off-the-chart levels, and my husband and I, not knowing what to do, chose to come home. After all, who wants to go to the hospital and stay? So we came home. But I couldn't eat without being sick, I had difficulty controlling the pain, and still we tried the best self-care we knew to do. Gut rest, a clear liquid diet and hydration as much as possible became our arsenal as together we fought to get through this illness. However, I didn't get better, I got worse. By Tuesday I had a pretty hefty fever, so I called the pancreatic clinic to update them. The nurse said, "'Oh my--with levels that high, we never send our patients home!' Please go to the ER at the hospital with which we are affiliated." So I did.

Admitted but trapped in ER

August 27, 2019

When I showed them documentation from the previous ER visit, there was a sudden flurry of activity all around me--port access, blood draws and administration of a strong pain killer followed by extremely powerful antibiotic. As a matter of fact, I ended up receiving 5 IV rounds of those antibiotics with no clear understanding of what was wrong that I needed so much of it. It was only on the day before my release that I accidentally discovered the reason by logging into my patient portal. To my surprise, I discovered that I had SIRS (Systemic Inflammatory Response Syndrome), an early stage of sepsis with various causative factors, one of which is pancreatitis.

I spent 2 full days and one night in the ER in incredible pain, plagued by nausea, vomiting and diarrhea, with no privacy. To make matters worse, the only bathroom was a community restroom that both patients and visitors were using, and it was down the hall! My care was provided by tight-lipped doctors who acted like they didn't believe I had pancreatitis (despite the records I brought with me), and refused to contact the pancreatic clinic affiliated with their own hospital system. By the end of the second day, I was so miserable, I told the nurse to tell my doctor that I wanted to be released. I could not stay in that environment with no answers, no clear reason to be there, and no plan. I could do what they were doing at home, my meds would be taken on time without argument from anyone, and I would prefer to throw up in my own, very clean bathroom--thank you very much. Within minutes, the medical team on call...one doctor and one medical student...came to see me. We pled our case, she wouldn't budge. She said they could not, in good conscience or wise medical intellect, release me to go home. She was the first doctor in two days to acknowledge that she had studied all the notes that were in the system from the pancreatic clinic, that they had ALL actually done so, that I indeed have chronic pancreatitis, and that they were treating me aggressively for complications from my most recent attack (complications I now know to be SIRS). Reluctantly, we agreed, and what do you know? Before 10 minutes had passed, I suddenly had a room of my own! It was a lovely room, and immediately my level of care improved. I was still under the care of the same doctors who refused to call the clinic; nevertheless, for the most part, I had excellent nursing care. The hospitalist assigned to me prescribed relief for my pain, and I slept well for the first time in two days.

The next day, one of the residents stepped in to tell me not to worry--I probably had a mild virus. "But you ran all those tests, and every one for the flu or virus was negative", I said, to which she replied, "Well, you probably had a cold."! I started to argue, then decided it wasn't worth it. I would like to interject here that all the doctors weren't incompetent--only some of them. The lead doctor told me every day during rounds that I had pancreatitis with residual complications. That being said, not one of them contacted the pancreatic clinic; they simply read the notes in my chart.

While we're talking about major problems, one of the nurses, thinking my port was clogged, forced 2 doses of Cathflo (a clot buster/blood thinning agent) into my port line, thinking it was actually going into the port. I was very leery of this treatment and voiced my concern, but she assured me that she knew what she was doing. However, in reality, this strong agent was infiltrating into the tissue around the port. Within minutes of the second forced dose, the tissue all around my port was swollen, red, and tender to touch. You see, my port wasn't clogged at all...it was merely dislodged, which is what my "gut" was telling me all along. All she had to do was de-access it and re-access; problem solved. I am still suffering today from that mistake!

Because I'd had enough, I called the pancreatic clinic myself and "tattled" on the doctors on my case. That evening, (hmmm....not sure why the test was expedited so quickly), I found myself in the MRI Department undergoing an MRCP, which is a special MRI to look specifically at the pancreas and surrounding organs. Yesterday the clinic called me, said the pancreatic team had reviewed my results, and I am scheduled to have an endoscopic ultrasound and biopsy on September 24th.

So--long story not so short, I am finally resting at home now, taking pancreatic enzymes before I eat anything at all (which is bland to say the least), and as I journal these things so I don't forget, I have come to realize a couple of important things: a) this is not a short story, but a lengthy history of my personal experience in what I perceive to be the decline of quality in our health care today. I hope you continue to bear with me as we walk together through this roller coaster ride aka journey through chronic illness, and b) I have learned many things I hope will help you should you ever find yourself or a loved one in my position.

Things my "Cranky Panky" taught me about emergent care and chronic illness:

1. Listen to your body, then ACT! Pain is your body telling you that something is wrong. Do something to help yourself!
2. If a doctor won't treat you as a whole, unique, and individual person, find one who will. I realize medicine has become extremely compartmentalized, but there ARE doctors who look at how intricately everything works together. Find a doctor like that and stick to them like glue!
3. Follow your instinctive intuition. If something doesn't seem right--speak up! You have a right to say NO!
4. Know your body and your conditions; know what medication you are supposed to take and when. If I tell a nurse certain drugs are "brand name medically necessary", I will never again waste time arguing with that nurse. When she brings me the generic form, insisting it is brand name, I will immediately call for the charge nurse...no more arguing and giving up in exhaustion and frustration!
5. If you must go to the ER, bring an advocate to speak for you during times you cannot do it yourself. And most of all, be it friend or family, be sure to take someone STRONG and unafraid to take up your cause!
6. Do not sign ANYTHING you do not understand! If the person holding the pen and paper to be signed cannot explain it, refrain from signing until they get someone in front of you who can.
7. Educate yourself about every condition you have. Be able to speak intelligently to your medical team. Be respectful, but don't allow them to be dismissive, withhold information, refuse to contact a doctor you need them to consult with, or act in any way condescendingly. They work for YOU!

I hope you have made it to the end of this entry, and I pray that it helps someone who needed it! God bless you...I love you!

Kathie Lea

Sticks, Stones AND Words...

Remember the childhood chant from long ago: "Sticks and stones may break my bones, but words can never hurt me!"? Ah...perhaps that may have eased the pain of hurtful words as a child, but is it the truth? I would say, absolutely NOT! Words do have the power to hurt, and once spoken can never be retrieved nor the pain diminished. It is why the Bible teaches us to speak only those things which give grace--not only to those to whom they are spoken, but to those within earshot who hear!

As we approach Myasthenia Gravis Awareness month in June, this train of thought  brings to mind some of the most painful words spoken to me to date: "Be glad you don't have Cancer!". Oh, how many times have I heard those words? Meant to be an encouragement and reminder of hope, all too often that statement--and the lack of loving care that follows--has the opposite effect. After all, there are very few fund raisers for awareness and research, a pitiful number of rallying cries to "cure Myasthenia Gravis", very few demonstrations of outreach to help and alleviate the physical and financial burden many MG patients face. On the other hand, I have heard the desperate and suffering cry out, "why can I not receive treatment?"; "How on earth can I possibly afford this expensive treatment?"; "Why doesn't my doctor know more about my disease?"; and even worse, "Why, oh why, did my loved one simply stop breathing and die in their sleep?" Please don't misunderstand me...I am grateful! I thank God for the simple blessings of life--each breath I breathe, every morsel of food I am capable of chewing and swallowing (even if it's only soup), each step I am able to take, each moment I get to share with loved ones. But please don't negate the gravity of my situation and that of many others just like me by pointing to another disease. In doing that, you negate our experiences and say--whether realizing it or not--that our suffering is invalid.

Please indulge me as I speak openly here. Have you seen the treatments I am subjected to and the trauma they bring? Do you know that Myasthenia Gravis can be just as debilitating--just as painful--just as deadly as cancer? And there is no cure for this disease either--only a small glimmer of hope that perhaps--just maybe--I might go into remission. But I am not promised that either. It struck me the other day as I was looking forward to an adjustment in my treatment schedule, that there will be no ceremonies with joyous bells to ring, indicating a victorious end to my treatments, for no matter how many I receive, there is no end in sight. An adjustment in frequency, perhaps, but never a "graduation" or release. Short of a miracle, I and others like me, will always--for the rest of our lives--find ourselves subject to invasive, painful and traumatic treatments, continuous testing and monitoring, and terrifying symptoms. I think I may have mentioned it...did I? It doesn't matter, because it does bear repeating: there is NO cure for Myasthenia Gravis, and we desperately need one!

If you look at me and I am smiling--thank God first, then thank a donor; thank Cover Girl/Max Factor/Mary Kay; thank the medical professionals that give tirelessly of their time and efforts to help people like me spend a little more time with those we love. If you see me struggling, pray for me; visit me; ask me how you can help! But whatever you do, please don't ever tell me or anyone who is suffering that we should be glad we don't have Cancer! I can assure you that I am already thankful. But trust me when I tell you--there are diseases as terrible, if not worse, than Cancer. Besides--this is not a competition. Your pain--whether physical or emotional--is yours...no worse, no less, than mine. And we would all do well to remember that throughout this journey called life, we are called to share one another's burdens, rejoicing in the good, grieving with the sorrowful (Romans 12:15). Most of all, we are to take care to choose our words carefully...
~"Do not use harmful words, but only helpful words, the kind that build up and provide what is needed, so that what you say will do good to those who hear you." (Ephesians 4:29 GNT)~

God bless you, I love you...
Kathie Lea

~"Finally, brothers and sisters, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." (Philippians 4:8)~

Discovering a Legacy, Finding Comfort and Strength

I am going to present this entry a little differently than in the past...just fair warning. If it seems disjointed, it's because the thoughts I write in my journal are just that sometimes...wandering, confused, discombobulated...with twists and turns, just like an amusement park ride. But if I am going to continue with the transparency and vulnerability I promised as we set out on this journey together, I must be honest...so here we are. Through it all, I pray that I can remember to "rejoice that thorn bushes have roses."

January 8, 2019
Confusion...sadness...frustration...a sense of alone-ness mixed with feelings of being overwhelmingly loved...all these emotions rolled into one big roller coaster ride that changes moment by moment without warning. I seek God's face for answers, along with those of the doctors He places in my path, yet somehow I am not receiving them. Why are there no answers? And what if they never come? Will my treatments, which I've been getting for 6 years, be taken away? I am amazed at how our bodies are incredibly and intricately woven together, yet I fail to understand how things can go so terribly wrong and no one seems to know why. But God knows...and at the moment He's not telling.
I am weary of the poking and prodding, the weakness and pain. The Paraneoplastic Disorder Panel that was run on December 20 was negative...not one test showed us where my tumor lies. So on Saturday, January 5th, I went again for more tests. It is no wonder I am anemic, I have blood draws every few days! I am truly weary of it all! And yet, somehow, I am also grateful...for doctors who express deep concern, spending time and effort to try to figure things out for me; for grace and kindness from my husband Gary and a few other special people in my life, for the BiPAP that has made a huge difference in easing my breathing difficulties. Oh yes, I am baffled...but I am still choosing HOPE. I must admit, however, that this gets harder with each passing day.

January 9, 2019
I made a big decision this week...I am deactivating my Facebook account. While it has been a source of connection to the outside world and that has been important to me since I am currently home bound, I have discovered that it is also emotionally draining and unhealthy for me. By biggest concern with this change in my life is losing the support of the online friends I've made through various support groups and the connection with some amazing folks I've met who have become dear "cruise buddies". And that doesn't even cover the loss of connection with family! I don't take this decision lightly because I know it will be difficult. On the other hand, it is imperative that I do whatever it takes to preserve my strength and protect my health.
My symptoms continue to be a major source of concern for me and baffling for my doctors. My feet are constantly purple and swollen...as cold as ice from calves to toes...no matter what I try. If I warm them up too quickly, I get very painful, blistering areas of swelling and inflammation in my toes which can quickly turn to ulcers and are easily infected and slow to heal. My blood sugar is another area of concern, rising to diabetic levels, then plummeting to extremely and dangerously low ranges without warning. My endocrinologist is working diligently to try to help me, but we still have no real answers to date....except of course, the knowledge that I have an "inappropriate insulin response". The 'why' of that is still a mystery.

January 15, 2019
I received my results to repeat testing this morning and the tumor antibody marker that was found a couple of months ago is positive once again, confirming that our suspicion is true; only this time, the number was even higher. Something must be done and I am going to work to ensure that it happens. I have 5 doctor's appoints between now and February 22, so surely with all of my medical team working on it, there will be resolution soon. As my Endocrinologist said, if we choose an aggressive route, I am promised nothing. On the other hand, to do nothing results in merely getting worse. So I think my choice is clear, and am praying that insurance will approve a PET scan soon.

January 19, 2019
Well, I obviously fit the description of "social butterfly' in the truest sense, because I just couldn't stay away from contact with my Facebook friends and family. Oh, how I have missed the interaction with so many who have touched my life in a profound way! I guess I didn't realize the positive aspects of Facebook until I took a few steps back and looked at things from a different...somewhat distant...perspective. In fact, just this morning, while spending time in prayer, I decided to do something a little different and go through my friends list, praying as I went. As I scrolled through the names, I realized that it would be easy, with the click of a button, to either stop following or unfriend any given person if I was so inclined. But as each name came into view, I was filled with a sense of warmth and love. You see, I asked God to help me see others through HIS eyes and perspective, and I realized the true, incalculable value of each person...not just in my life, but as one of God's creations. My list is long and is represented by family, childhood friends, work friends, neighbors, church and Bible study friends, my online support group family, my infusion clinic family, my medical team family and my cruise buddies...each of whom have crossed my path or have been purposefully placed in my life for a specific and valuable reason. And I realized today how very much I am blessed.

That being said, the time away has been profitable, as I have been seeing doctors, doing research and compiling notes as instructed by my doctors. In addition, Gary and I have been working on our ancestry (prompted by a "chance" meeting of a man on our last cruise who looks just like Gary's dad), and we have been pleased to discover a rich heritage of Christian values, morality and all-around goodness in the Bradfield lineage. Gary's ancestors were Quakers and there are meticulous records that date way back to the 1700's. While conducting research, I came across some beautiful words penned by one of Gary's ancestors, LaVina Bradfield Wilson. Oh, that I could leave a legacy such as the one she did...a legacy of truth and love for Christ that lives on to this day!

LaVina's grandson described her as "consumed with the hunger to know God. She not only knew about Christ, she lived like she knew Him. Her life story is filled with accounts of helping the less fortunate, even when things were already tight. 'The Lord will provide' was her rallying cry. And He did, too! Once, after a miraculous cure of one of the children which was brought about through prayer, a doctor said, 'You serve a powerful God.' She certainly did! LaVina is no longer with us on this earth, but her legacy will live on in her children and the countless numbers of people she has touched along the way. The world has indeed changed since 1898. And it is a better place. Thanks, Grandma. We love you!" ~Kirk Harrison~

Yes, indeed, even to this day...over 120 years after her birth...her legacy lives on and my heart has been blessed. LaVina had musical talent, playing the pump organ (mostly hymns, of course) and wrote some poems/prose that have touched my heart during this difficult time in my own life. I cannot imagine the hardships that those who lived so many years ago faced....sleeping in covered wagons, moving from place to place, even losing a mother at a young age and taking over the motherly duties. But LaVina did all of that and more and still wrote of her love for, devotion to, and trust in the Lord. I am going to share two of those writings with you today. The first is comforting to me because it is a reminder that I know my Redeemer lives, and I have no doubt that He is able to keep that which I've committed unto Him against all that life throws at me. The second is, I believe, based on Proverbs 31 as LaVina lived it. It is my greatest desire to leave such a legacy to my children and the generations that come after me as I strive to be the mother God wants me to be. My prayer is that they touch your heart as they have mine.

CONSOLATION 
How beautiful the sunset as we travel down the road
We just lift our hearts to heaven and praise our blessed Lord.
Or, it may be in the morning when He speaks in accents clear.
Never mind your daily troubles, we can feel His presence near.
He comes to us when least expected to inspire us to be true,
And to dedicate ourselves to the task He has called us to pursue.
What a joy that fills our spirits as we seek His blessed face
And learn to trust Him fully; He upholds us by His grace.
It may be in the night time as we travel near and far
Our eyes behold the heavens and we see the evening star.
We're reminded of its mission as it stand out clear and bright,
To guide man through the darkness and direct him in his flight.
Oh how God must love His children He created for His own
And He asks them to be faithful until the day is done.
Do we heed His tender mercy and strive to do and be our best
Until He takes us to His heaven where there'll be perfect peace and rest.
~LaVina Bradfield Wilson~

WHAT IS A MOTHER
First of all, she is a human being, with all the hopes and fears as everyone else. She loves us when we're bad, as well as when we're good. She always sees what is best in us and tells everyone else about it. Oh, she may see our shortcomings and our faults and even our sins, but she is careful to keep them to herself. Her love can melt the heart of stone and her kiss can heal the greatest hurt. Her smile of approval is often all that is needed to give courage to proceed. She has the tenderness of an angel toward her children, when needed, and the boldness of a lioness when it comes to protecting her own. She can weep over a wayward son or daughter when everyone else turns them down, and proves to her own satisfaction that they are innocent or that someone else has led them astray. She can spot the wrong company in a moment of time and can recognize a phony when she sees it. She is quick to give advice which is not always accepted or appreciated, however. Her grandchildren are always the smartest and the cutest, when compared with others. They always have the traits of her own son or daughter. If they are good traits, sometimes they even have some of her own good qualities.

She is a woman of many talents. She can dress dolls, blow whistles, spin tops, wind up cars, build houses out of blocks and walk over more toys without falling, than anyone else in the world. She can make over clothes for her children, manage a budget and get a meal when there is practically nothing in the house to eat and ration it out to each one as they have need. She's never too tired to shop, rinse out a few garments that failed to get in the regular wash, or iron a shirt, or sew on a button that seemed to come off at the last moment, and then go to the church or to someone's home and help prepare clothes and gifts for the missionary box. She can sing the love of God right into the heart of her child and inspire the needed faith and trust that it takes to win them for God and the church. She can listen to the heartaches of others and grieve over them as they were her own. And when she has gone to her reward, those that have been inspired by her council and have been led by her precepts will rise up and call her blessed.
~LaVina Bradfield Wilson~

May God bless each of you mightily. I love you...
Kathie Lea

My Symphony

The Lord your God is among you, a warrior who saves. 

He will rejoice over you with gladness. He will be quiet

in His love. He will delight in you with singing

~Zephaniah 3:17~

Before I say anything at all about what is going on in my life, I'd like to dedicate this entry to the memory and honor of my friend, Gary Frank Kitchens who joined the hosts of Heaven this past week and whose life we spent celebrating this afternoon. Oh, that we could all be the salt and the light to an ugly, dark and needy world as Gary and his beautiful wife, Sharon, have been! Please keep Sharon and the entire family in your prayers as they draw strength from the God they know, love and serve.

I always say that I am going to update my blog more often and be more proactive in voicing the things God is teaching me through this journey with chronic illness, and then I look, and alas...it has been four whole months since my last entry! I lament over this, but only briefly, because to do so just makes me feel worse--about myself, my situation, my failures. So I will charge onward and try my best to get as much said with as few words as I am able to pen...that is, if that is even within the realm of possibility...ha! After all, I know I can be wordy. To my chagrin, this blog is so unlike the many I see that are short, sweet and to the point. I just can't seem to get there, so please allow me to apologize in advance. I have so much to share about what God is doing in my life that I scarcely know where to begin. Oh, that HE would give me the words to show HIS light, HIS love, HIS glory reflected in me!  

The last four months have been full of victories and difficulties, but as I ask the question...much like Lauren Daigle in her song, 'You Say'..."Am I more than just the sum of every high and every low?", I find through scripture and the Holy Spirit within me that the answer is a resounding YES! I am so much more, because I am a masterpiece of God; my significance lies squarely on what GOD thinks and says of me! Not only that, like a perfect symphony, He orchestrates my every step, places my feet on firm ground, leads me through my dance of faith. All I have to do is follow the Maestro, stand on my Father's feet as we dance together, and allow HIM to direct my path.

I recently attended my high school class reunion, something I determined to do, despite the tremendous physical and emotional strain activities such as this place on me. Not only did I want to go, I felt compelled to go. Oh how I needed the fellowship, camaraderie and reconnection with lifelong friends--some of whom I have not seen in well over twenty or thirty years! One friend in particular walked in, and as we embraced, it was as if we had never lost touch. In fact, upon later comparing our senior class picture with the reunion group picture, I noticed that very little has changed at all. There we are in both pictures together--side by side--with her on my right and I on her left. Though we have both seen our share of pain and heartache, the years melted away and we felt like school girls again.

Little did I know that God would use her in a profound way over the next few weeks, to comfort, prepare, and bring peace to my heart. She is a "hand-written note" kind of a person, and I love that about her, especially in this age when everyone uses technology to communicate, but no one seems to really connect with anyone on a truly personal level. But my friend and I connect, and it was with great joy that I recognized her characteristic handwriting on a note, then again when a package arrived a few days later. Within that package came a source of comfort and peace that I didn't even know I needed at the time--but God knew. I hastily opened the enclosed CD (music by Hillary Scott and the Scott Family) and began to play the music. As I listened, God spoke to my heart through two songs in particular. The first is called 'Still', and assurance came that God is working continuously by parting waters to make a way for me, moving mountains that I can't see and answering my prayer before I even speak! All He needs for me to be...is...still. The second song I knew carried a message for me was 'Thy Will be Done', which says that no matter what happens in my life, whether storms or trials or whatever--my prayer should always be like that of a child, pure and centered on those four words: "Thy Will be Done"! I know God sees, He hears, and He answers. All I have to do is rest, knowing that He is GOD. And I. am. NOT. 

So with my spirit stirred, but not quite knowing why, I reflected on a "chance" encounter I had earlier in the month. We attended a Myasthenia Gravis Support Group meeting in Fort Worth a couple of weeks earlier, and I "happened" to be seated across the table from a lovely woman who had major surgery called a thymectomy in an endeavor to put her Myasthenia Gravis in remission. It was difficult to hear her in the restaurant meeting room...where people were chatting, plates and silverware clinking...and we never really had the opportunity to finish our conversation. In fact, we failed to even exchange phone numbers. I did, however, get one name--and it was a nickname. Now, as I thought about the past few weeks, I wondered--what's God up to? Why is He making it crystal clear that He's preparing me for something with His provision of love, encouragement, support and--of course-- the "thing", other than scripture, that speaks the most to me: music?

The answer came just a few days later as I visited my doctor in Houston. She spent an hour and a half with me, going over test results, making a game plan, even discussing thymectomy. During our visit, the words "Paraneoplastic Myasthenia Gravis" became front and center, and while I won't bore you with technicalities, it simply means that there is a tumor somewhere--perhaps small and hidden, possibly even occult--that is causing the body to fight against it. But in the process of fighting that tumor, an autoimmune response is launched, which causes or worsens diseases such as Myasthenia Gravis and others. So the tumor must be located and treated, all the while treating the autoimmune disease itself. I was shell-shocked. Cancer? Me? What more, Lord? As I tried to wrap my brain around it all, the words to the music my friend sent me kept playing over and over in my mind..."You're parting waters, making a way for me; You're moving mountains that I don't even see! You've answered my prayer before I even speak. All You need for me to be...is...still." I could therefore sing along as I hummed the other tune and my heart cried, "I know You see me, I know You hear me, Lord. Your plans are for me, goodness You have in store! So Thy will be done, Thy will be done, Thy will be done!" Suddenly, for the first time in a very long time, I felt hope that my disease process (which has been aggressive and progressive) would slow down and that I will actually be able to do more than just look at a dance floor...I may even be able to dance again!

Remember the lady from whom I sat across during the MG Support Group meeting? Since my doctor and I had discussed thymectomy and this dear lady lives in my area and would be able to answer questions and even refer me to her surgeon, I looked for her name within an email I received by the leader of our support group. I was worried that I wouldn't be able to find her real name, but I picked one from the group and sent an email. To my delight, I chose the correct address, we exchanged phone numbers, and I gathered valuable information from her via telephone. 

I called her thoracic surgeon, who operates out of UT Southwestern in Dallas, got an appointment right away, and went to see him, naively expecting to go into the hospital and have surgery ASAP. Well, to my great disappointment, things don't quite work that way. The surgeon told me that after reviewing all my records, consulting with my neurologist and assessing my condition, he would NOT be doing surgery. Though we need to get to the root of where and what type the tumor is, he doesn't believe it lies in the thymus gland because it didn't show up on CT scan. He also voiced concern that I am so sick right now that surgery would be too dangerous and that I am at high risk of not surviving at all. If I did, there's no guarantee that a thymectomy would even help. I am sure I looked deflated (I sure felt deflated) because he looked me right in the eye, told me in no uncertain terms that "God has a plan for you!", and then spent the next two hours with me, doing research for me, trying to connect me with specialists all over the country, assuring me that he wanted to step outside his scope of expertise to help me get better. He encouraged me by telling me that God has allowed this to happen because I am tenacious and have enough fortitude to keep pressing on, that I am smart enough to use the information we gather to educate and advocate, helping others in the same situation I am in. He even encouraged me to blog about my experiences!

Since I have what he calls a "constellation" of autoimmune conditions as well as a genetic connective tissue disease (the latter probably contributing to the former), he wants me to work with him to continue to seek out answers, as my condition is rare. There are no easy answers, no treatments outside what we're currently doing until we find the cancer location, so for now, it is going to be a road paved with searching, researching, networking with this new amazing doctor, and praying for guidance. I have no doubt that, just like a symphony, God orchestrated every move toward this direction which ultimately led straight to this doctor, who believes that I can find answers that will help me, my children and others as long as I continue to persevere and not give up.

In the meantime, I have an appointment next week with a paraneoplastic specialist that the surgeon referred me to, and I trust God with it all. After all, God's word is full of promises, and He is faithful to keep them all.

God bless you, I love you...

~"But I trust in You, Lord; I say, 'You are my God'. My times are in Your hands..." 

(Psalm 21:14-15a)~

Hidden Treasures

"I will give you hidden treasures, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name." ~Isaiah 45:3~

Today I am not going to focus on illness because, honestly, it gets so tiresome to have to go through so much and then to talk about it causes me to grow even more weary. Besides, I am not my disease. I have other interests in my life and while awareness is extremely important, sometimes you have to take a break from the burden of it all and talk about something else. So today I want to share an experience with you that I had this morning that was profoundly moving to me.

I. love. jewelry. There it is...it's out there. But truth be told, don't most women? I even have three holes in each ear just so I can wear lovely earrings to make my diminutive ears and non-existent earlobes look like they are actually there! I also take care of the jewelry that I have, with some pieces dating back 45 - 50 years. As my 63rd birthday approaches in a couple of weeks (shhhh...don't tell anyone I'm that old!), I am reminded of the lovely little earrings my parents gave me for my 18th birthday. I have no idea whether or not they are valuable...they are just simple, gold studs set with little green stones...but they definitely are a treasure to me because my parents gave them to me. And I have been wearing them, carrying them with me on every move and every trip I have ever made, off and on for 45 years. I put in studs and leave them in my ears, even when going to bed; and I had done that when I arose yesterday to get ready for my weekly IVIG treatment for Myasthenia Gravis, Lupus and Common Variable Immune Deficiency. I didn't feel well from the get-go, but I took a shower and washed my hair anyway. I never even thought about taking the studs out of my ears because, frankly, I have been wearing them so long, I don't notice they are even there...they are like a part of my anatomy!

Well, my hair is long and I wrapped it in a towel to get the excess water out, then proceeded to dry my hair as much as my weakened muscles would permit. I finally gave up on that project and decided to just let my hair dry naturally. *I know this is getting long, but please keep reading...I have a point to all this rambling, I promise!!

Just before the nurse arrived, I saw the back of an earring on the floor mat in the bathroom. My hands quickly reached up to my ears, and to my dismay, I discovered that one of my studs was missing...yes, one of the treasured studs my parents gave me so long ago! I asked Gary to help me look for it, but we ran out of time upon the nurse's arrival, and with the day's treatment and resulting ill effects from it, my poor little green stud was temporarily forgotten.

But you know how the Bible says that God gives us mercies afresh and anew every morning? It's true, and I awakened this morning at about 4:00 a.m. and couldn't sleep. The best thing for me in that situation is to spend time in prayer, get out my Bible and begin to read, asking God to show me a truth that I need for that day. As I was reading scripture, God clearly reminded me of His power and love. In Daniel 20:22, the Bible says this about God:

"It is He who reveals the profound and hidden things; He knows what is in the darkness and the light dwells in Him." [italics mine]

While that is a scripture I am familiar with, it suddenly became "Remah" to me...a direct, spoken message  to me, coming alive in my heart...and though I wasn't quite sure what God was going to reveal, I knew that this particular message from scripture was spoken to me.

A little while ago, I went to grab the dark brown floor mats and toilet lid cover to throw in the washing machine, and as I was about to remove the lid cover, something caught the light and shimmered in the dark fabric of the lid cover. As I ran my hand across it, I found my precious stud! God knew that even this tiny stud...inconsequential, really, in the whole scheme of the vastness of all things entrusted to His care...was important to me! And He loves me enough to reveal what was hidden in the darkness. It was something I had searched for, but could not find. I don't know about you, but I find that amazing.

I have learned that just when I am feeling small...invisible and invalidated, especially with all things medically related...and begin to worry about all the big stuff happening in my life, God reaches down and whispers, "I'm here, my daughter, I love you." He reminds me through His Word that He hears our cries and answers prayers. When our feet are sinking in miry clay and we feel like we are being sucked under by the weight of it all, He draws us up, sets our feet on solid ground and puts a new song in our mouths (Psalm 40:1). He gives me breath when I have thought I had no more, and walks with me in the darkness until He completes His purpose in me. And I will trust Him to do just that, even when things don't seem to be going my way. As the Martina McBride song says,

"God is great, but sometimes life ain't good. And when I pray, it doesn't always turn out like I think it should--but I do it anyway!"

Because you know what? We are more important than anything to God...we were created in His very image, to have fellowship and communion with Him.

So I will hang on to His promises, which are all true, and I will thank Him for the 63 years He has given me to know Him and to love Him. And on that note, I leave you with this thought:

I am determined to be invincible 'til He has finished His purpose in me! And nothing shall shake me, for He'll never forsake me! I am determined to live for the King!            ~"I am Determined" by Tim Shepherd~

God bless you, I love you...
Kathie Lea

 

Updates and Milestones...Concern and Celebration

The past month has been a busy one for me, with visits to several doctors multiple times. It has been exhausting and perplexing, painful and difficult. But it has also been a time of reflection and peace in the midst of chaos because through it all, I recognize how truly blessed I am. I had some diagnoses added to my list, one or two of no real consequence other than pain, added medication and inconvenience, and one that I must do something about soon. I finally got my reports from the testing done by the Pulmonologist, and I have combination/mixed Obstructive and Restrictive Lung Disease. I am praying that I am approved for a BiPAP machine which will help with my labored breathing and decreased oxygen saturation. I already fulfill the criteria required for insurance coverage, but am still scheduled for a titration sleep study on August 2nd. What I am praying for is a BiPAP machine that will not have a fixed setting, but allow me the freedom to set it for what I need as I need it...whether asleep or awake...so that I can avoid ER trips and intubations. Too many Myasthenia Gravis patients die due to respiratory failure from weak chest wall muscles and/or diaphragm failure because they don't get proper ventilation in time. Having a BiPAP will provide me with noninvasive ventilation when signs of impending crisis are evident before the actual crisis occurs. This will be a HUGE aid in my fight against MG, a vital addition to my arsenal of tools going forward.

I reached a milestone this week, one that I wasn't sure I would attain when I first started this journey. There is much unknown about Myasthenia Gravis, but one thing that is proving helpful to me considering my treatment limitations is IV Immunoglobulin (IVIG) therapy. I posted an update on Facebook the other day, but for those of you who support, pray for, and encourage me day after day, week after week, who do not have Facebook accounts, I am writing this for you...

"200". Three little numbers (two of which are zeros, generally referred to as "nil" and often viewed as nothing but place holders) that, when put together, have great meaning...especially to people like me. "Really?", you ask..."It looks like an inconsequential number to me. What significance could that number possibly hold?" Good question! Let me help you understand what the number "200" represents for me:

• Two years of driving over 600 miles round trip to an infusion clinic in Houston a minimum of every two weeks
• 3 1/2 years of weekly nursing care in my home 
• 8-10 amazing nurses
• Multiple needle sticks, collapsed veins and surgical placement of a port in my chest
• Three different home health care companies
• SIX different brands of IV Immunoglobulins (IVIG)
• One good pharmacy and one specialty pharmacy that exemplifies excellence
• A Patient Advocate that works tirelessly to help patients like me receive treatment they need
• Roughly $1.5 million in costs for these treatments alone
• Hundreds of thousands of DONORS who gave the gift of life through their plasma donations

Most of all, "200" represents LIFE...another year, another week, another day...to love my husband, my family, my friends; to worship my God--Jehovah Jireh (God, Who provides), Jehovah Rapha (God, Who heals). Yes, it is true. This past Tuesday, July 17, 2018, I reached another milestone in my IVIG therapy. Tuesday was my 200th treatment. I am still here, and I am blessed. To be sure, "200" is looking pretty awesome to me!

"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through Whom we have gained access by faith into this grace in which we now stand. And we boast in the HOPE of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." ~Romans 5:1-4~

Thank you once again for your loving support. It means more to me than I can express.
God bless you, I love you...
Kathie Lea

 

 

Myasthenia Gravis Has a Face, And it Just Might Look Familiar

As we close out Myasthenia Gravis Awareness Month, I find myself regretting my failure to really promote education about this difficult disease. But the truth is that it is because I have this condition that my physical strength is gone and I find very little reserve with which to work on things like writing blog entries and creating photo collages, memes, and informative Facebook posts that tell my story. You see, Myasthenia Gravis is no respecter of persons in that it randomly strikes at will, regardless of age, gender or race. In my mind, it is a beast which seemingly has a life and personality, with a desire to destroy any and all in its path. In spite of the nature of this illness, with its ultimate destruction at the nerve junction that prevents the message relay from the brain to the muscle which results in devastating and debilitating muscle weakness, it still affects each individual uniquely. It is why we are known in the MG community as snowflakes...no two of us are alike. While it is considered rare, the fight for a cure and research is ongoing, so there is HOPE on the horizon. But as my experience over the past few weeks reveals, there is still not enough knowledge, even among medical professionals.

Over the past month, I have seen just about every "ologist" there is--each referring me to another because whatever is going on is out of the realm of their specialty/expertise. From Rheumatology to Pulmonology, Endocrinology, Radiology, Hematology, Nephrology and Gastroenterology to a Sleep Clinic--I have seen them all. And almost without exception, I am confronted with faces devoid of expression or perhaps even the proverbial "deer in the headlights" look that comes with lack of knowledge about Myasthenia Gravis the moment the words pass my lips. And every single doctor has asked me why I see a neurologist in Houston. Well, when you find the best, you don't change anything. You travel over 300 miles anytime you need her unexpectedly, and for your frequent appointments because--frankly--she "gets it". She knows her stuff. She's not forgotten why she has chosen a lifetime of caring for her patients, nor her oath to "first do no harm". For years, she has been the only doctor to actually perform a physical and neurological assessment at every single office visit. Nope, I will never leave her because, simply put, she's nothing short of amazing. And in the almost 6 years since I have been seeing her, she has never once disappointed me in the quality of her care.

Thankfully, I am slowly but surely finding healthcare providers in my area who are doing more than just typing information into a computer. The 4 new doctors I have seen in the past two weeks have not even had their computers with them...they looked me in the eyes, talked with me, even examined me. I was so amazed that I thanked each and every one of them for caring enough to actually pay attention. I do think that sometimes we forget that as overwhelmed as we are with our conditions, the physicians that oversee our care are just as overwhelmed and just as tired. They are overworked and buried under a load of paperwork and federal regulations that require time away from the reasons they got into medicine in the first place. On the other hand, the lack of knowledge and awareness of diseases like Myasthenia Gravis is staggering. So it is left to us...the patients...to rally the strength to advocate for ourselves and educate others.

The bottom line is this: Myasthenia Gravis is a reality with which roughly 20 in 100,000 people in America struggle, making it a rare disorder. Consider what that means...perhaps not much to the 99,980 people for whom there is freedom from pain, weakness, a fight for each and every breath. But for those of us bowled over by the ravages of this disease, it means a lot. It means multiple doctors, nurses, home health care, monthly or weekly IV or plasmapheresis treatments, daily medications, machines to help us breathe, ports surgically implanted in our bodies, ventilators, wheelchairs, walkers, multiple hospitalizations, catastrophic medical expenses, and worry. Most of all, Myasthenia Gravis has a face. And more than likely, it could be the face of someone you know and love.

For more information, please visit www.myasthenia.org.

God bless you, I love you...
Kathie Lea

"The Lord will command His lovingkindness in the daytime; and His song will be with me in the night, a prayer to the God of my life." ~Psalms 42: 8~