"I am with you and will watch over you wherever you go" ~Genesis 28:15a~

Several weeks ago, I attended an event for ladies at my church, and God graciously, mercifully and lovingly met me there. Through the study and following activity, He spoke clearly to my heart, instructing me to write down the testimony of His teaching and create a blog entry. I admit that I am disappointed in the fact that I put off the writing of this entry until now, as the sharpness and clarity with which I saw His message to me on that day has become less sharp or clear--even out of focus entirely, with fogginess around the edges--and my delay in obedience shows. As a friend of mine so wisely said recently, "Delayed obedience is, in fact, disobedience." Simple, painful truth, to be sure.

That being said, I do want to attempt to share the things God revealed to me on that day. We were instructed to write the letters P E A C E on a sheet of paper and use each letter to describe our life's journey through Christ to our own personal place of peace in Him. As I thought about my life, these words came to mind: Pain, Encouragement, Alive, Commitment, Endurance. PEACE.  As I wrote feverishly, I ran out of time and much of what I had written down was in abbreviated form--hence my inability today to bring it into focus properly, the consequence of delayed obedience...in truth, disobedience. I pray that as I write this, the story of my pathway to PEACE in Christ is illuminated and God's wonderful grace and glory will be magnified.

PAIN--we can all say we've experienced it, right? Some of us more than others, but pain has hit us all, nonetheless. My life, beginning with childhood, has been rife with pain. From molestation at a young age by an extended family member we thought we could trust, to difficulty in school due to abusive behavior by multiple teachers, to struggling with illness all along the way, I was ultimately shaped by life's circumstances into a shy, insecure young teen with no self confidence, little self esteem and plenty of self loathing. 

Which brings me to the next word on my page, ENCOURAGEMENT. Oh, dear ones, never underestimate the power of your love, or a hug, or the impact your encouragement has on the life of a child, the depressed, or the ill. Sometimes your love for the one who feels altogether unlovely and unloveable can heal even the most broken of hearts! I thank God for the families who took me under their wings, opened their doors to me, and loved me unconditionally. 

ALIVE--yes, I am alive! I will never forget the day at the age of 15 when I surrendered my life to God through faith in Jesus Christ--the day my heart truly started beating with joy, and God gave me a song to sing! My spirit was dead, but was now alive; my lips, which were silent for so long, burst open in singing. I had no idea then that I would face physical death over and over throughout the years ahead, nor did I ever dream that God would rescue me repeatedly as He worked to complete His purpose in me and my family...but He did! And I am alive today to sing His praises!

COMMITMENT--When I gave my heart to Christ, I committed my everything to Him...my talents, my children and family to come, my home. I remember when my youngest daughter Aimee was about 8 years old, we found a growth on her thigh. After having it scanned, we discovered it was a bone tumor of some kind, but until it was biopsied, we wouldn't know whether or not it was malignant. Cancer, I am sure, strikes fear in the heart of most, but definitely in that of a parent as it relates to one of their children. I remember clearly the conversation I had with God shortly before the surgery she went through to have the tumor removed. Believing it was probably cancer, I sobbed before my Heavenly Father, demanding to know how He could possibly expect us to walk this path. Why would He give me two beautiful daughters only to take one from me? Though not audible, I distinctly heard God's voice speaking directly and quietly to my heart, telling me to be still and listen. As His child, I instinctively knew His voice and our conversation was something like this: "Didn't you dedicate this child to me when she was born?", He asked. "Yes, Lord--that's true." "And didn't you teach her about me and lead her to a relationship with me through faith?" "Yes, Lord, that is also true, You know it is!" "My beloved child", He said, "Don't you know by now that she's not yours? She is Mine. I loaned her to you so you could teach her my ways and through her life, glorify my name. You have done that. She. Is. Mine. Trust me." Suddenly, my tears stopped flowing, and peace flooded my soul. As it turned out, the tumor, which was quite large, was removed from the bone, biopsied, and found to be benign. And just as I prayed she would, Aimee has grown into a godly young woman who is bringing up her own children in the ways of the Lord, bringing glory to the name of God. Commitment. It's hard, but He has proven His promises are all true: "Commit to the Lord whatever you do and He will establish your plans." (Proverbs 16:3) I know parents of children whose stories didn't turn out like mine, their hearts broken by loss. But the bottom line is this--God is faithful and true, and He will turn ashes to beauty, mourning to joy, and bring good from tragedy. He wants us to commit everything to Him, leave it all in His hands, and trust Him to complete His work in us. He loves us, and He is GOOD. "Blessed be God Who has not turned away my prayer nor His lovingkindness toward me." ~Psalm 66:20~

ENDURANCE--Ahh, this is the word that means the most to me, but the one for which my own vocabulary and ability to express myself fail me. So I will turn to the One Whose Word never fails and let Him speak for me. James 1:2-4 tells us to "Consider it all joy, my brothers, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result so that you may be perfect and complete, lacking in nothing." Romans 12:12 says, "Be joyful in hope, patient in affliction, faithful in prayer." In Isaiah 48:10, we find these words: "Behold I have refined thee but not with silver; I have chosen thee in the furnace of affliction." And I find tremendous encouragement with this scripture found in Job 23:10, "But He knows the way I take; when He has tried me, I shall come out as gold." 

God bless you, I love you...

Kathie Lea

"Though the fig tree does not bud and there are no grapes on the vines though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior. The Sovereign Lord is my strength; He makes my feet like the feet of a deer, He enables me to tread on the heights." ~Habakkuk 3:17-19~

P E A C E 

  

Sorrowful Nights, Merciful Mornings and Healing of Hearts

"Sing to the LORD, you saints of His; praise His holy name. For His anger lasts only a moment, but His favor lasts a lifetime; weeping may remain for a night, but rejoicing comes in the morning. You turned my wailing into dancing; You removed my sackcloth and clothed me with joy, that my heart may sing to You and not be silent. O LORD my God, I will give you thanks forever." ~Psalm 30:4-5; 11-12~

I heard a sermon this morning that moved my heart and spirit, bringing me to my knees before God in humility and gratitude. Despite the struggles I have gone through over the years, the pain I have experienced due to illness and injuries, and the brokenness of sorrow as loved one after loved one goes ahead of me to meet the Lord, things in my life really aren't so terrible. I live in a country that affords me the freedom to worship as I choose; I have several Bibles on my shelf that I can turn to at any time; I have a home, food, vehicles, and just enough money for my convenience and comfort. That is not the case in many countries, where poverty abounds, people are starving and there is no religious freedom. In fact, if you are a Christian in some countries, you are persecuted, even unto death. My heart is broken for those people who are in this situation and are targeted and persecuted because of their faith. But my heart is broken even more for those who don't have a relationship with God through faith in Christ at all, and I pray that a revival will sweep this world in a way we have never seen before. We need the Hand of God over our lives now more than ever, and I pray that He will heal our land as we seek His face and turn toward Him, leaving behind our bent to do things wrong. 

It is true what the Bible promises...God is ever faithful, always pouring out His grace, His mercy and His healing, no matter what circumstances look like at the moment for us. I know this because I have experienced it over and over again, and He has never, ever failed me. That's not to say I haven't experienced difficulties and sorrows...I have. In fact, the past few months have been a roller coaster ride of emotions and physical pain, having experienced a car accident in November...the injuries for which I am still receiving treatment...the loss of my mother just three days past Christmas, and the unexpected death of a dear friend and brother in March. Life isn't easy, is it? But I have a Savior and Lord who watches over me and brings me joy and light in the midst of the dark and sorrowful days, reminding me through everything that surrounds me that He is truly a mighty, loving and powerful God. 

If you are struggling today with a broken heart, a physical or mental illness, loss of a job or financial difficulties, please know that you are loved! The Bible tells us in James 1:2-4 that we should "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." Oh, that I would take that to heart, that I would persevere in my walk with Christ, and allow the difficulties and sorrows I face to cause me to grow into a mature and complete woman of faith! There is joy in the morning after a night of sorrow; His mercies are, indeed, fresh and new each day, and my heart is healed by His loving touch of comfort and strength.

God bless you, I love you.

Kathie Lea

"Yet this I call to mind and therefore I have hope: because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness."

~Lamentations 3:21-23 

It seems as if it's been forever since I've posted here; most certainly it has been far too long, as there has been so much going on, I scarcely know where to begin! My mind is forever filled with thoughts of, "I need to blog about that!" and then I don't know how to put things in words so I simply haven't written anything of substance down, with the exception of a notation in my daily planner that is often brief and abbreviated. I guess I always have good intentions, though follow-through seems to be my most difficult challenge. I decided today, however, to try to put together my thoughts and journal them here in some semblance of coherence.

The last couple of years have brought me through many valleys, but the peaks I have enjoyed here and there have definitely been worth the climb. I have mentioned over the past few years that we weren't getting a handle on my Myasthenia Gravis, and my Chronic Pancreatitis was progressing rapidly. My doctors discovered in April of 2022 that my MG was, in all probability, either triggered, or made worse, by a condition called Paraneoplastic Syndrome. This is a condition where the body puts out antibodies to fight a tumor (or tumors), which can be benign, malignant or anywhere in between; sometimes they are obvious, sometimes occult or hidden. But instead of fighting the tumor(s), those antibodies fight and damage a part of the body (such as the synaptic nerve junction, in my case) which results in conditions such as Myasthenia Gravis. I had my spleen and half my pancreas removed in April and in the process, we discovered that I had several cysts or tumors called IPMNs within the main and branch ducts of my pancreas that were not well visualized on imaging...not quite full blown cancer, but definitely almost, with more abnormal cells than normal and classified as high grade dysplasia, which is considered a malignant process. In fact, the surgical oncologist and the members of the medical team that I see for this condition all told me that they were shocked at the report and that had I not had surgery, but had continued to "wait and watch", I would definitely have pancreatic cancer within a year or two. 

While I am grateful for the surgery because it has definitely put my Myasthenia Gravis in the "well-controlled" category and I have been able to drive again, participate in things I enjoy doing, and even stop one of the treatments in my regime, I have remained symptomatic with my pancreas. I have continued to have debilitating pain, nausea, vomiting and rapid, unexplained weight loss, much to our chagrin. To tell the truth, I have been baffled, but on having my 6 month scan, we discovered the reason why...I still have at least one lesion within a duct of my pancreas that was left during the surgery in April because of its location and size. Of course, I was very disturbed upon learning that they didn't remove all the worrisome portions of my pancreas, and once again we are waiting and watching (though the waiting is far less when it comes to increments of time and the watching is far more aggressive than before). In order to remove the offending lesion (which at last scan seems to be growing), we will need to remove my entire pancreas, which is of course quite major surgery, and causes a whole host of issues of its own. Since I am weighing in at roughly 91 lbs, I am pretty sure that discussion will be on the table as I see my medical team over the next few weeks.

That being said, one of the things I have been looking forward to the most since getting my MG under control has been stopping my plasmapheresis treatments and having the special port I had surgically placed for those specific treatments removed by my favorite surgeon. I am pleased to say that I passed this milestone on January 23, 2023 and with great joy, I said "goodbye" to my apheresis port. After approximately 90 plasmapheresis treatments over the past 4 years, I proudly bear the scar on my chest, and consider it my "badge of courage". I still have the port on the other side of my chest and continue to get maintenance IVIG treatments every two weeks to keep all my conditions controlled and I am ever grateful that those treatments are available to me. THANK YOU to all who donate plasma...you are helping people like me to live our best lives! 

The other thing I am thrilled about is that with the renewed strength that improvement in my MG symptoms has brought, I have discovered that I can sing once again, I can walk more than I have in years, and have even done some dance steps along the way. I continue to find myself wonderstruck at the blessings I feel at being able to do those things. Next step...getting back on a bicycle! Now THAT would be quite the feat, and is one that I look forward to with great joy! And should major surgery be coming my way in the near future, it is wonderful to know that my strength is improved enough that I should not only survive it, but handle it well. I am trusting that God knows my needs and that He will provide...He is proving that to me even now, and is ever faithful in all His ways! 

"I will give thanks to Thee O Lord, among the peoples; and I will sing praises to Thee among the nations. For Thy lovingkindness is great above the heavens; and Thy truth reaches to the skies. Be exalted, O God, above the heavens, and Thy glory above all the earth." ~Psalm 108:3-5~

God bless you!

Love, Kathie Lea

God's Answer to my "Why"

"Therefore encourage one another and build one another up, just as you are doing."

~I Thessalonians 5:11~

I woke up in the middle of the night last week, knowing something was terribly wrong. After suffering for several hours, I ultimately conceded that it was time to go to the hospital emergency room. Once the initial assessment was completed and results from the blood work received, the doctors and nurses scurried about and before I knew it, I was admitted and the infection that was causing Sepsis was bombarded by two round the clock, extremely potent antibiotics in an effort to eradicate whatever was attacking my body and placing my life in jeopardy. It took a several days, but I began to feel better until finally, I was relieved that the doctors said I could look forward to being discharged soon. 

Late in the week, towards the end of my hospital stay, I learned that a classmate and long-time friend had passed away. I knew that many, many prayers had been raised on his behalf, just as they had for me. I began to struggle with my improvement versus his demise and I began to question God. Why did I make it through--as I have countless times before--and he didn't? I suppose I feel a bit of survivor's guilt as one by one, classmates, friends, and loved ones are passing away, and I--who all the doctors say should have already died many times over--am still here. So as I lay in that hospital bed and tears flowed freely down my face, I sincerely asked God this simple question: "Why? Why am I still here, Lord...WHY?"

At about the time I had spoken those words, the nurses were making their shift change rounds, and my night nursing team introduced me to a new nurse. She was a sweet and lovely Asian woman (I will call her Li, though that is not  her real name), obviously dedicated to the care of her patients. I did notice, however, that she appeared pale and tired, but until we had a chance to get to know one another, I had no idea what her own personal struggle over the past year had been. A couple of hours later, Li came in to administer my medications, and out of the blue, she commented that her hair was short. I told her it was cute, and she adamantly said, "No, it's curly!". Again, I assured her that it looked good, and suddenly, she was sharing her story of her journey fighting breast cancer--the chemotherapy, radiation, double mastectomy and reconstruction surgeries, medications she must take for five more years, the hair loss and regrowth, with the resulting change to short and curly from that which was once straight. My heart ached for her and as we spoke freely together, I asked her if I could put her name on my prayer list. Her face softened, and she asked me if I am a Christian; when I said "Oh, yes!", she replied, "I am Christian too. I would be honored if you would pray for me." She bowed slightly, as is the custom of many folks from Asia, spelled her name for me, and left the room. Not realizing the significance of this encounter--that God was indeed showing me the answer to my question of "Why?"--I began to pray earnestly for Li.

Later, as I was preparing for discharge, Li came in to remove my IV. As she removed the needle, she covered the site with sterile gauze and held pressure with both hands to stop the bleeding. As much as I have been through, you would think I would be used to some things, but honestly I don't really like needles, so I always avert my eyes or look down; on this day I looked away and closed my eyes. As I did, I felt a sudden compulsion to pray for Li. I didn't speak a word out loud, but somehow this precious soul and I "connected". As my heart spoke to God on her behalf, I felt her lift one hand from the pressure on my arm and place it within my hand. I looked up and said, "I just prayed for you"; with tears shining in her eyes, she replied, "I know". She bandaged my arm, gave me a hug and an "I love you", and walked out of my room. I am convinced she looked more refreshed and stood a little straighter and taller than she had earlier that day, before we shared those special moments together.

Suddenly, it dawned on me that this is my "why". God isn't finished with me yet! The Bible says that He knows every hair on our heads and the number of all our days. While I grieve over the loss of the many who have gone before me, it is not without hope. I now realize it accomplishes nothing to feel sorrow or confusion for His having rescued me yet again. After all, He is GOD, and frankly, I'm not.

I really like the words to "Fight Song" by Rachel Platten--particularly the opening verse--because, simply put, they are true. Many times we think we can't do much because of limitations, or we feel alone in the fight with which we struggle. But the fact remains that we can and do make a difference!

"Like a small boat on the ocean

Sending big waves into motion.

Like how a single word can make a heart open.

I might only have one match, 

But I can make an explosion!"

I'm setting my face forward--to do my best to live my life each day as God would have me--trusting HIM to make a difference in the lives of others...His answer to my "why".

God bless you,

I love you...

Kathie Lea

"Being confident of this very thing, that He which hath begun a good work in you will perform it until the day of Jesus Christ." ~Philippians 1:6~

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