The truth about Myasthenia Gravis

"To share your weakness is to make yourself vulnerable;

To make yourself vulnerable is to show your strength"

~Criss Jami~

June is Myasthenia Gravis Awareness Month, and keeping that in mind, I am writing to you today. This entry will be entirely centered around this one aspect of my chronic illness journey, so please...bear with
me, as I am sure this will be long!

When I began walking this path and started blogging about my journey, someone I love and respect told me to chronicle my own experiences rather than compiling and sharing those of others...suggesting, perhaps, that the daily struggle I face is something that is not my own. I took that advisement in stride, and decided at that moment to be as open, honest, and transparent as possible. But sometimes, reality is overwhelming and tiresome, even for me. So...to all of you reading this now, thank you for being here. Your love and your prayers mean more to me than you can possibly know. As I have mentioned before, it isn't easy to fight, and every now and then, depression is a cloud that hovers about, threatening to descend and shroud me in darkness, especially when I spend most days unable to get out, unable to drive, unable to talk on the phone, too weak to function much at all, truth be known. But fight I must, and my strong faith in my Anchor of Hope helps keep depression at bay. I am involved in a couple of online support groups, and I see that as a ministry of light, for which I am grateful.

So what is this "thing" called Myasthenia Gravis? Basically, it is a disease for which there is no cure, where there is a breakdown in communication between nerves and muscles. This breakdown causes weakness in the muscles under voluntary control, such as those needed to see, chew, swallow, talk, and breathe, as well as those needed to walk, use the arms and hands. I am finding more and more that many still have never heard of it. While considered rare, MG strikes thousands of people around the world without respect for age, gender or race.

Because there is a lack of understanding (even among the medical profession), many of us are subjected to comments like, "you should count your blessings, at least it's not cancer!", "well, if you would exercise more, you would feel better", "you really ought to get out and be involved in life more",  or even "I read that it isn't fatal and that with treatment you can live a normal life". And I am sure that if you look on the internet, you will find outdated information that tells you just that...that this debilitating and often fatal disease is anything but. To minimize the seriousness of this difficult-to-treat, life-threatening disease and the debilitation it causes, by making comments like these does a huge disservice to those of us who struggle daily. We would never make such flippant remarks to someone with Cancer or MS or ALS...but we do to those with MG, simply because this disease and its devastating ramifications are not fully understood.

You may have heard that MG patients are often called 'snowflakes'. This is because each of us walks a different disease path, and none of us is exactly the same. For some, treatment with Mestinon (a drug that helps get the message from the nerve to the muscle to function properly) is successful. For others, it takes harsh drugs and/or chemotherapy, plasmapheresis or IV Immunoglobulin (IVIG) infusions, all of which have terrible side effects and risks associated with them, to get the disease temporarily under control. And then there are those who have Refractory Myasthenia, who do not respond to treatment at all.  We have lost many people in the Myasthenia Gravis community just this year due to complications of this disease. Some have been quite young, some have left young children and spouses, and others have been a little older. But each life was important. Each person fought hard and ultimately lost the battle.

A while back, in one of my online support groups, someone (who doesn't have MG) wanted to know what our "real" symptoms are. Her actual question went something like this: "I know you have droopy eyelids and all, but are there any 'real' symptoms?" To this lady and to anyone else who wants a view into what living with Myasthenia Gravis looks like, I pen this response:
"Real" symptoms? What does that mean? Droopy eyelids sounds funny, I suppose...like something afflicting one of the dwarves in the story of Snow White, but it is very real and not very funny when you cannot open your eyes, no matter how hard you try. Breathing becomes a chore and during sleep, it stops altogether so you sleep with a facemask connected to a machine that keeps air constantly flowing...every.single.night. It gets "real" very quickly when you go to rise up out of bed, but can't because your neck is too weak to lift your head; your mouth drops open because you can't keep it closed; you try to smile, but your facial muscles are so weak, the smile never comes; phone calls not only take your voice away, but your very breath as well. "Real" is when taking a shower, brushing your teeth, drying and styling your hair AND getting dressed all in the same morning is a HUGE accomplishment, one which requires rest afterwards just to be able to do whatever it was that got you out of bed in the first place. It's being so weak your husband has to carry you to the bathroom in the middle of the night because your legs won't take you there; for some, it's walking into a store on what you thought was a good day, and having to be wheeled out because no matter how hard you will your muscles to keep your feet on solid ground, they just won't cooperate. It's blurred vision and double vision that takes away the joy you once had when reading; it's muscle weakness so severe in your arms and legs that you can lift nothing of any measurable weight, can take no more than a few steps at a time, and can no longer drive. It's being a ballroom dancer who sits in a wheelchair grieving over the loss of the ability to dance, yet having a heart that soars with happiness that your husband can still dance and you can live vicariously on the dance floor through friends who will still dance with him. It's knowing that because of extenuating circumstances, the only treatment available to you is a weekly IVIG infusion accessed via a port that has been surgically implanted into your chest, and then wondering if the next infusion is going to be a good batch or not, if there will be an adverse reaction, or if all will go smoothly. It's getting excited about having a power chair because it will bring back a little independence, and then being too weak to get in it and hold yourself upright enough to keep from melting and sliding right onto the floor. It's trying to eat, but not having the strength to chew; to swallow, but either choking unexpectedly or having it all...whether liquid or solid...come out of your nose. It's never knowing exactly when you'll turn the corner that lands you down into the respiratory crisis abyss (and the fear of being on a ventilator that comes with it), being susceptible to infection, questioning when exactly you should go to the hospital, and wondering once you get there, will they know what to do to save you? This is MY story, and oh yes, it is all too "real"! It is only through faith that my God is holding my hand through it all that I can fight.

Please keep me and all that are afflicted with Myasthenia Gravis in your prayers. And if you will, please help us spread awareness. Because with awareness, perhaps...one day...we will see a cure. #ihaveheardofmg

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

Rare Disease Awareness Day, 2017

Intravenous Immunoglobulin

A Life-long Treatment

Today is 2/28/2017, Rare Disease Awareness Day. I have 3 diseases which are considered rare: Common Variable Immune Deficiency (CVID), Myasthenia Gravis (MG),and Vascular Ehlers-Danlos (VEDS). Last year, throughout Rare Disease Awareness Month, I made a video and then wrote entries explaining what each of my conditions is and how they affect me. Please feel free to scroll down to each topic or click on one of the links to the side of the page to read those entries (they are the ones written in March of last year). I am not going to bore you by explaining all of that again, but I thought I'd kick off the next month of Rare Disease Awareness, and remind you what treatment for two of my diseases (CVID and MG) looks like. What you see here is IVIG (Intravenous Immunoglobulin), which is a blood product made from the plasma of thousands of donors. This gives me the good antibodies I need (the ones that fight infection) that my body doesn't produce, and helps get rid of the bad antibodies that are attacking me as if my own body were the enemy. I get these treatments every single week, and will for the rest of my life.

All the supplies needed for

one IVIG infusion

Today was infusion day, and I had everything out and ready (see picture) for my nurse to come over, access my port, and administer this life-sustaining treatment. She came to my home at around 7:45 this morning, and I got my IVIG infusion, which was a great relief. For some reason, although it helps me the first few days, I feel such a decline after a few days that by the next week when it is due, I am incredibly weak and truly look forward to getting it. Since I didn’t feel very well to start with, I slept almost all day. *sigh* Hopefully, I will feel much better tomorrow. This pain, fatigue, weakness and constantly feeling ill is too exhausting for words.

At Texas Oncology

Feraheme Infusion

I know anemia isn't rare, but since this is an update since my last post, I thought I'd fill you in on what's going on. As I mentioned in my entry the other day, I am seriously anemic, and I had my first Feraheme infusion at the Texas Oncology Clinic in Denton yesterday. I was a bit nervous, but the nurse made sure to slow the rate down so that I didn’t have severe side effects, and things ran smoothly, though I did suffer some nausea and flu-like symptoms yesterday evening and today. As I was sitting in the infusion suite, my Hematologist, Dr. Spivey came in, recognized me immediately (even though he’s only seen me in a hospital setting), and we chatted a little about my situation. I think he is a very good doctor, weighing out everything he sees, and sorts things out with great thought. I have another Feraheme infusion to do next Monday, and will be seeing him two weeks later to see where we go from here. He mentioned a bone marrow biopsy and while that is not on the schedule, I do think it is smoldering on the back burner of his thoughts, especially since I have both anemia and neutropenia, with no idea as to why. We shall see how things go, and whether or not the infusions (both iron and IVIG) are giving me any improvement. I saw a man yesterday whose hemoglobin wasn’t much lower than mine, and he had to have a blood transfusion right away. Hopefully, the Feraheme infusion will keep me from having to do that. I figure one blood product infused into my body is quite enough!

I want to say once again that I am incredibly grateful for the many donors who give so people like me can continue to have life. I am also grateful for good doctors, such as my Neurologist, Hematologist and PCP, who actually LISTEN and act, for the amazing Nurses who devote their lives to caring for people like me, for the Patient Advocates who fight for us when we have no strength left to do so, and for the Specialty Pharmacies who do their best to serve us well and keep us going. I feel so blessed to have amazing people in my life who truly care! So again...I want to thank the many of you who are supporting me with your encouragement, your prayers, your calls, texts, messages, cards, and visits. Whatever would I do without you? God is making it very clear by answering prayer and making provision in countless ways that He is caring for me, and that no matter what, I am valuable to Him! Thank you for being a part of His work in me. God bless you, I love you...

“What is the price of two sparrows—one copper coin? But not a single sparrow can fall to the ground without God knowing about it. And the very hairs on your head are numbered; so don’t be afraid; you are more valuable to God than a whole flock of sparrows.” ~Matthew 10:29-31~

A Little Dose of Reality

But he knows the way that I take; when he has tried me, I shall come out as gold.

~Job 23:10~

I really need to get better about posting entries in this blog, but honestly, I am often so overwhelmed with fatigue and weakness, the very notion of being able to put two coherent sentences together is more than I can do, and I give up before I even get started. Nevertheless, today I am putting pen to paper, as it were, because I have much to share since my last entry. I apologize in advance for the length of this particular post…I really wish I could write short little entertaining synopses of my days like I see in so many blogs I read now and then. But for those who are praying with me and for me, wondering what is going on when I am silent, transparency is an important part of our journey together. And frankly, that means that every now and then, it takes a lot of words to paint a picture that isn’t always entertaining or pretty. Besides, ask anyone who knows me well and they will tell you…I tend to be a wordy person anyway, so what can I say?

The majesty of the mountains
is breathtaking

2016 ended with a wonderful Christmas trip (which meant driving through two major snow storms) to beautiful Pagosa Springs, CO to see Gary’s youngest daughter and her sweet family. We had a lovely time, and look forward to going back in the early summer, when it isn’t quite so cold and there isn’t quite as much snow. I did get some wonderful pictures of the mountains…both beautiful and awe-inspiring…a sight that always makes my breath catch in my throat. And the time spent with this precious family that we love so much was absolutely worth the “white knuckle” drive it took to get there and back.

2017 began with hope that this will be the year that things turn around for me, but as each day has melded from one to the next in a virtual blur, I have begun to wonder if my optimism was, in fact, unfounded. Not that I have a sense of doom overshadowing my foundation of joy, I don’t. But the reality of it all is that nagging concerns about increasingly abnormal lab results over the last several months, excessive fatigue, and weakness on top of constant pain cannot continue to be ignored. I have a really bad habit of saying to myself, “it will get better soon…all I have to do is push through, and everything will be okay”…but everything is not always okay, no matter how much I will it to be.

With Aimee on day two
of cruise, first formal night

Since we enjoyed such a lovely cruise with my oldest daughter and her husband in October, we decided to plan another one in January with my youngest daughter and her husband. I had been looking forward to it, and couldn’t wait to spend sweet one-on-one time with them. We sailed out of Galveston on Sunday, January 22, 2017, and the week held great promise of beautiful weather and smooth sailing. But on the first or second day, I noticed a blue knot on my right leg about the size of a half-dollar that was painful in a deep, aching way. I couldn’t recall hitting it on anything, and while I was concerned about it, I didn’t consider it serious enough for me to do much more than watch it, albeit somewhat warily. It wasn’t red, it wasn’t hot…just a blue knot within a vein. My feet were purple and swollen, but then they always are unless I elevate them, so I didn’t consider that anything out of the ordinary. But a dear friend of mine had just recovered from some clots in her leg, and since I am at high risk for them myself, the thought of her experience kept some concern in the back of my mind. I was determined, though, that I was not going to worry too much. After all, we were on this cruise to relax, have fun, and enjoy time with our kids. On Thursday night in the middle of the night, however, I woke up with a pain in my chest so severe, it felt as if someone had hit me with a brick.  I was short of breath, my heart was racing, and pain gripped me with every breath. As I so often do, I told myself, “it will get better soon…all I have to do is push through, and everything will be okay”. But I wondered if somehow I had developed a clot in my lungs; on the other hand, I had trouble believing that something that serious could possibly be happening at that moment. All I had to do was stay calm and things would line out. I was sure of it.

The pier shopping area in
beautiful Cozumel

We had planned to spend time with Mike and Aimee the next day (Friday) in Cozumel, but I was still struggling to breathe and was not feeling well at all. We made our way around the little shops near the pier and after a few minutes, I had to go back to the ship to rest. By Friday evening, I had chills so severe, I couldn’t control the shaking; after asking the stateroom attendant for extra blankets, I went to bed. I awoke again in the middle of the night with bone-wrenching coughing, racing heart rate, high fever, and stabbing pain accentuating every breath. By now I knew…without a doubt…something was very, very wrong. I promised Gary that first thing the next morning, I would go to the ship’s medical center to see the doctor.

Saturday morning, still racked with pain and high fever, I saw the ship’s doctor, who ordered a chest x-ray (which revealed pleural effusion) and flu screen (which was negative); she ultimately diagnosed me with probable pneumonia with pleural effusion. She started me on IV antibiotics and sent me back to my stateroom to rest. I didn’t argue with her because I was absolutely miserable. How could I possibly have gotten so sick? I never thought I would say this because I usually don’t want a cruise to end, but I really and truly wanted to go home. I was extremely relieved that I had the foresight to have coordinated some doctors’ visits to coincide with the end of our cruise, and was happy to see them both first thing Monday morning. Both doctors agreed with the ship’s doctor’s diagnosis of pneumonia with pleural effusion.

Progression of weakness and
illness in just a matter of days

I was extremely weak, so my neurologist reluctantly agreed to allow me to get my IVIG treatment on Tuesday, as long as I could get my fever down below 101 degrees. We both expressed hope that the treatment would not only increase my muscle strength, but help me fight the infection that was causing me to be so sick. We then made the 300 mile drive home, and I fell into bed. I was so sick, I didn’t care that there were loads of laundry left undone and suitcases I had no strength to unpack. I did a lot of praying that night, because the night before, my temperature was 103.3, and I’d not seen fever as low as 101 since Friday. But thankfully, when I woke up on Tuesday morning, my temperature was 100.8…low enough to proceed with my treatment. Out of sheer exhaustion from days of fever, sleeplessness and pain, I slept through the entire infusion (which takes all day). Later, I had a difficult night, alternating fragmented sleep with coughing spells, hard chills, and sweats.

Incapacitating weakness is
rearing its ugly head

By Wednesday afternoon, my temperature was back up to 102, and I felt as if I were drowning in the fluid in my lungs. Myasthenia Gravis can cause muscle weakness so severe that the chest wall muscles and diaphragm can no longer work hard enough to help cough up secretions, and since I was getting weaker by the moment, my night was again fraught with sleeplessness and a seemingly fight to the death just to breathe. The next morning…one week after my symptoms began…I went to the emergency room. Surprisingly, I guess because I had been on both IV and oral antibiotics for 5 days, a chest x-ray revealed no pneumonia nor any remnant pleural effusion. However, the astute doctor, suspecting a pulmonary embolism, ran a gamut of blood tests. The results to one of those tests, a D-Dimer test (which can be elevated when a blood clot is present), was very abnormally high. Concerned about my condition and believing that I needed special testing to rule out a pulmonary embolism, she transferred me via ambulance to a local hospital, where I was admitted. 

I will always be grateful to that doctor for her diligence because we discovered a blood clot in my right leg via Venous Doppler, and the attending physician made a presumptive diagnosis of a pulmonary embolism, based on symptoms and highly elevated D-Dimer. More than likely, the spontaneous hematoma I had noticed in my leg had released a couple of clots, which landed in my lower calf and in my lung. In addition, lab values which we had been cautiously watching spiral downward over the past months were alarmingly low, and a Hematologist joined my medical team, along with an Infectious Disease Doctor and a Gastroenterologist. Together, they diagnosed me with Deep Vein Thrombosis, a probable Pulmonary Embolism, Atypical Pneumonia, Anemia, Neutropenia (severely low white counts which put me at high risk for any infection that comes my way), and exacerbation of my Myasthenia Gravis. I was so weak, I could scarcely speak, swallow, or hold my eyes open or my head up. 

I finally got out of the hospital
gown and into my cute pj's!

I began treatment to dissolve the blood clots, and for the first two days was on strict bed rest. I was in isolation until I was cleared of the possibility of having Tuberculosis, and when the isolation was lifted, I was thrilled. I hated that my visitors had to go to a sterile room and don protective masks, etc. just to be able to sit with me and visit. I guess I rejoiced too soon, though, because I was immediately placed in isolation again; this time, to protect me from other people’s germs because my immune system is so completely compromised. I had a GI workup, looking for a bleed to explain why I am so anemic, and when that was clear, I received IV iron infusions on two consecutive days. We still do not know the root cause of the anemia or the neutropenia, and I may end up having a bone marrow biopsy, though I am not sure when that will be. I spent 6 days in the hospital under the care of this excellent team of physicians, and am currently working with them to find answers and to get my conditions under control. Unfortunately, though, until my insurance approves some special iron infusions, I have to wait. It has been a full month since this setback began, and though my lungs are better, I continue to suffer from weakness, pain and extreme fatigue. Meanwhile, my lab numbers continue to drop.

We lost a Myasthenia Gravis Warrior this week, which hit me really hard. Wendy was a mentor, a friend, a source of encouragement, wisdom, information, support and empathy. We were in a couple of online support groups together, and she was one of the first to reach out to me when I first joined the Myasthenia Gravis group. She never failed to respond with knowledge and caring to anyone and everyone who posed a question to the group. If someone was hurting, Wendy was there to lift up and encourage. I can’t believe she is gone, a victim of a poor health care system in the state in which she lived, denied the very care and treatment she so desperately needed. She and I are the same age, we have many of the same conditions, and her loss shook me to my very core. Wendy had a huge impact on my life and my walk with a primary immune deficiency and autoimmune diseases, and I will remember her always with fondness and high regard. In fact, I am a better person for having known her.

Thank you so much for your prayers and your support…each act of kindness, every visit, each text or phone call to let me know you are thinking of me, each word of love and encouragement…means more to me than words can express.

God bless you, I love you…

Experiencing Power Requires Plugging into the Source

~God is my strength and power: and He makes my way perfect" (2 Samuel 22:33)~

On Friday, November 18, 2016, Gary and I had to go to Dallas for business purposes. Because we were in Dallas anyway and had planned to see some special friends that evening, we decided to stay in the city and kill some time until we were to meet our friends. The only way I can do these types of things is to transport my power chair, which involves my sweet husband taking it apart and putting it back together at every stop so we can carry it in our car. He never, ever complains about this because he knows I need it and I have no other means to get out of the house. So it was disheartening when we stopped at a mall to look around, and he was unable to get my chair to operate for me. It absolutely would. not. budge. On these particular chairs, the number of lights flashing in sequence is an error code that corresponds with a specific problem. Since I didn't have my Operator's Manual with me, we couldn't figure out what was wrong because we couldn't decipher the code. I can't walk more than a few steps, so we cancelled our time with friends and went home. Gary carried my chair in, piece by piece, and began to inspect it.

I was disappointed, but not overly upset, because I need another chair with elevating leg rests (I am having increasing difficulty with my feet and ankles turning purple and swelling) and a higher back with a headrest that helps support my neck and head when my muscles are overly weak. But Gary can't stand to have an unsolved mystery around, especially when it involves the inner workings of things. I suppose he's been that way all his life because I've heard stories of him taking things apart just to see how they work and then putting them back together again. So we worked as a team and found the code and corresponding problem via the Operator's Manual. Once he found that the connectors to the right side motor were bent, Gary was able to fix it, and voila...my chair is almost as good as new!

I posted this small victory on FB, noting that "Things always work best when the motors they rely on are actually connected to the power source!" One of my dearest and wisest friends responded with the comment, "People work best that way as well." Such a simple statement, and yet incredibly profound! How many of us go along with our busy days, never really "plugging in" to our Power Source, the Spirit of God? And what about our Operator's Manual, the Bible? I mentioned in my last entry that it was through the Word of God that I found answers and peace in the midst of struggle and fear. As a woman of faith, I have found that in order to troubleshoot all the error messages in my life, all I have to do is read the Owner's Manual, connect with my Power Source, and drive on under HIS power!

I still need a new chair that will meet my ever-changing (and worsening) needs, but until that happens, I am perfectly satisfied that my little chair works again, even in its perfectly beautiful imperfection.

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

Fighting Illness, Struggling with Fear, Finding Peace...

"Blessed be God, Who has not turned away my prayer nor His lovingkindness from me" 
~Psalm 66:20~

Well, it's been a while since I have posted here, so I decided that today, while I am flooded with thoughts, that I would try to sort through them and journal them here. I pray that God will use some of what I have learned over the past few weeks and months to touch one of you as only He can.

Much has happened since I was last here, and I continue to struggle with pain, weakness and inability to function the way I truly want to, even though I still get my IVIG treatments on a weekly basis. Throughout the summer, the ugly faces of Lupus and Hashimoto's joined those of Myasthenia Gravis and Vestibular Dysfunction, rearing up and taunting me with their flares, making life miserable by adding deep bone and joint pain, swelling, large patches of hair loss, exhaustion, intermittent bouts of fever, infections, and imbalance to my already debilitating muscle weakness. Alarmed at the amount of hair I was losing, I sought the care of a dermatologist, who did a biopsy and told me that the patches on my scalp were Lupus lesions, and that the hair would probably not grow back. We did move forward, however, with steroid injections and a topical steroid cream to try to stop the hair loss...both diffuse and patchy...and possibly heal the lesions by calming the inflammation, and she recommended that I see a rheumatologist to try to get my Lupus under control. Because I was, once again, too weak to care for long hair and because I was losing it by the handful anyway, I decided to cut it short. Not one to keep the same hair style or color, we shall see how long this lasts. I even considered shaving my head and just buying several wigs to wear based on whatever mood I'm in...ha! But for now, it is short and I am enjoying the ease of care.

In August, I saw my neurologist, who was alarmed at my weakened state and frustrated with the lack of progress on the brand of IVIG I was getting, even going so far as to using the dreaded words "refractory" to describe my MG, and suggesting the possibility of shifting to plasmapheresis treatments if things didn't improve in the next few weeks. So we made the difficult decision to start treatment with prednisone, something we had both agreed I would not do unless it was absolutely necessary since I have a primary immune deficiency and a history of all sorts of problems with this medication. I began prednisone therapy in mid-August, and also changed brands of IVIG for the fifth or sixth time.  Unfortunately, prednisone comes with a whole set of side effects like susceptibility to infection, redistribution of weight/weight gain, loss of bone density, cataracts, elevated blood pressure and blood sugar, and possible Avascular Necrosis (which I've had twice). Since I have experienced all of these and have high blood pressure, cataracts, diabetes, and severe osteoporosis, this decision was not taken lightly. However, both of these changes, while not exactly what I wanted to do, seem to at least be keeping things a little more controlled than they were in August. So what I thought would be a short term treatment option has turned into a long term situation; hopefully, the prednisone will have done its job by January and I will be able to wean off of it. In the meantime, my neurologist referred me to an endocrinologist to try to get a handle on my Osteoporosis, Diabetes, and Hashtimoto's. The jury is still out on how that is going, with my first Osteoporosis treatment to commence tomorrow (Tuesday, November 1st).

In September, it became very apparent that my veins were no longer viable for IV treatments, so we made the decision to have a power port implanted in my chest. I had surgery on September 14th and it was the best surgical experience I have ever had. I found a surgeon that does this type of thing regularly, and from the moment we scheduled the surgery to the moment it was completed, I knew that God had ordained my steps. The night before surgery, the anesthesiologist called me, and we went over my questions and what exactly to expect. Because I have Myasthenia Gravis, it is important that the anesthesiologist is familiar with this rare disease and that he is able to treat me properly. I was relieved to discover that he was very familiar with MG and had a plan in place to ensure that I was able to breathe before he ever put any medication into my veins. Not only that, he used a soft airway balloon instead of the ordinary rigid tubing they use with general anesthesia, so the usual paralytic drug they give to intubate was not necessary. When I got to pre-op, the nurse that was caring for me told me that she was very familiar with MG because her sister had it. Then the surgeon came in, and asked if she could pray with me before we went into surgery. Her prayer for wisdom, guidance, and success with the surgery was so moving to me, I found myself in tears with gratitude. I was wheeled into the OR, and had the wonderful opportunity to meet everyone in the room...conversing with them and laughing, boosting my confidence even more. I made the comment that I had never had this much interaction with my caregivers in all of my surgical experiences, and the surgeon, who was holding my hand, patted my arm and responded, "well, you won't remember this anyway", to which my anesthesiologist replied, "Oh yes, she will...I haven't given her any medicine yet! I want to make sure she can breathe okay before proceeding." Because I have chest wall muscle and diaphram weakness, it was important to be able to lie flat without compromising my breathing ability. Once he was satisfied that we could proceed, we moved forward. I woke up with a new port and the ability to receive all my blood draws and treatments without having to go through the trauma of my veins collapsing and blowing out. What a blessing this has been!

We went on a cruise vacation in October, and though I was sick most of the time due to an IVIG reaction and because I got a respiratory infection, we really enjoyed sweet time with family and friends. Because I had fever, I worried that I would be unable to get my treatment; but God answered prayer once again, and the fever broke the night before my infusion. Unfortunately, the nurse was unable to access my port, though she tried 4 times, and we ended up having to go with regular IV access. Of course, the inability to access the port left me fearful of what was wrong...was it a clot, a kink in the catheter, or had the catheter migrated or the port shifted because of the violent coughing I had experienced with the respiratory infection? I called the surgeon, and she ordered a medication to break up any clots that were clogging up the port. She said if that didn't work, I would need to see an interventional radiologist immediately to determine the problem and repair/replace the port. I was quite fearful, and reached out to my prayer warrior friends to pray for me. In the meantime, the specialty pharmacy I use sent me the medication I needed and I had it the next morning for the nurse to administer. When she got here, she decided to try one more time to access the port, and lo and behold, everything was fine. Coincidence? I don't believe in coincidences. I believe in answered prayer, and I have no doubt God was at work in me to HIS glory!

So you would think that I wouldn't continue to be fearful about things, right? Yes, that would be the most sensible thing...after all, God has proven Himself faithful to me over and over and over again. But Friday of last week, I woke up totally consumed with fear. All kinds of scenarios about all kinds of things...from health issues to major life stressors...were going through my mind, and I was overwhelmed. I decided that I would spend my first few hours reading the Bible and praying, and I didn't even know where to begin or where to read. In a word, I was incapacitated by fear. So I asked God to fill my mind with thoughts of Him, and to guide me to any word He had for me by leading me to the scriptures He wanted me to read. The Bible is very clear about this, and tells us in Jeremiah 29:13 that if we seek His face, we will find Him if we search for Him with all our hearts. Psalm 139:5-10 tells us that no matter where we find ourselves, God is there to hold us with His right hand of righteousness. So truly, we have nothing to fear.

There is a song that Kari Jobe sings called "Find You on my Knees" that is a perfect depiction of what I felt on Friday morning. I will share the lyrics to that song with you below, but first I want to share what God did for me on Friday. As I cried out to him, seeking His face, I found Him. I was in the "uttermost depths" of the sea of fear, and even there His hand held me fast. Not only that, He gave me scripture to soothe my spirit and fill me with peace. First, I found myself reading some highlighted verses in Psalm: "For He has not despised nor abhorred the affliction of the afflicted; neither has He hid His face from him; but when he cried unto Him, He heard." (Psalm 22:24) "As for God, His way is perfect: the word of the Lord is tried: He is a shield to all those that trust in Him. For who is God save the Lord? Or who is a rock save our God? It is God who girds me with strength and makes my way perfect. He makes my feet like hinds' feet and sets me upon my high places." "You enlarge my steps under me, and my feet have not slipped." (Psalm 18:30-33, 36) And then, just as I was about to close my Bible, having been filled with a peace that I cannot explain, the pages turned and suddenly I was looking at the very scripture that caused my heart to sing: "Thou has given him his heart's desire, and Thou hast not withheld the request of his lips." (Psalm 21:2) Oh, that I could learn to fully trust Him with everything, stop worrying, and keep the fear from my heart! If you find yourself in this place, I pray that God fills you with peace as He did me, so that no matter what comes our way, His strength is displayed in our weakness.

Find You on my Knees

~Kari Jobe~

"Troubles chasing me again, breaking down my best defense; I'm looking God, I'm looking for You. Weary just won't let me rest and fear is filling up my head; I'm longing God, I'm longing for You. But I will find You in the place I'm in, find You when I'm at my end, find You when there's nothing left of me to offer You except for brokenness. You lift me up, You never leave me thirsty. When I am weak, when I am lost and searching; I find You on my knees.

So what if sorrow shakes my faith? What if heartache still remains? I'll trust You my God, I'll trust You. 'Cause You are faithful, and I will find You in the place I'm in, find You when I'm at my end, find You when there's nothing left of me to offer You except for brokenness. You lift me up, You never leave me thirsty. When I am weak, when I am lost and searching, I find you on my knees...

When the hope is gone; when the fear is strong; when the pain is real; when it's hard to heal; when my faith is shaken and my heart is broken and my joy is stolen God, I know that You lift me up, You never leave me searching. I find You in the place I'm in, find you when I'm at my end, find You when there's nothing left of me to offer You except for brokenness. You lift me up, You never leave me thirsty. When I am weak, when I am lost and searching, I find you on my knees." 

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

A Message of HOPE for My Fellow Lupus Warriors

         

For all the Lupus Warriors who are fighting each and every day: I see your struggle…I know what you are going through! I am keenly aware of the unpredictability of your disease, never knowing from day to day whether or not you are going to wake up in pain so intense that you can scarcely put your feet on the floor. Every joint screams at you because they are all incredibly inflamed and swollen, and you run fever every single day. Without warning, your head hurts so badly that you must remain in a darkened, quiet room because your heightened sensitivity to light and sound is nauseating. I know about having to crawl to the bathroom because the slightest head movement brings on pain so intense that you surely cannot stand upright and, more often than not, you are so sick you are unable to hold anything down. I understand what “brain fog” is. I also know firsthand the fear you feel when you have “strange” symptoms that are difficult to describe to the many doctors you see. I know what it is like to have been told more than once that your situation is unusual, even complicated. I know the pain that the simple act of breathing brings on due to inflammation of the lining of your lungs (pleuritis), the joints of your ribs (costochondritis) or the lining of your heart (pericarditis). I recognize the red rash that spreads across your face like a butterfly, and understand why you wear long sleeves, jeans or pants instead of shorts, and floppy hats on sunny days; I identify with your need to slather your skin with sunblock when you go out into the sun. I have felt the same alarm you surely must feel as your once beautiful hair falls out by the handful.

I know about extreme and rapid weight loss that signals a flare, and then just as suddenly, the weight gain and swelling (not to mention the risk of other long-term, life-altering side effects such as glaucoma, diabetes, cataracts, osteoporosis and avascular necrosis) that come from the massive doses of corticosteroid you must take to calm that flare down. I know all about chemotherapy, lengthy and repeated hospital stays, kidney biopsies, liver biopsies (and all kinds of other biopsies), multiple surgeries, MRI’s, CT scans, x-rays and lab tests. And I know the disappointment that comes with every positive test confirming involvement of one or more of your major organs, including your heart, lungs, kidneys, central nervous system and peripheral nervous system. I feel your pain as you go through physical therapy or rehab to try to get back some semblance of what you have lost to this terrible disease. I understand what it means to learn to walk all over again.

I know what it is like to do your best to be the parent you always wanted to be and recognize your deep desire to cheer your children on, participate in their activities, and provide food, shelter and clothing for them. And I understand what it feels like to sob brokenheartedly after your children have gone to bed because you are certain that you have failed them…you simply could not push through to do all the things that needed to get done. I know the toll this disease takes when it steals away the career you loved, and I identify with your sense of hopelessness as you sink to the floor in grief and cry over yet another medical bill that you know that you cannot pay. I know, and my heart aches for us all.

But I also know that we are WARRIORS…fighters who never give up, no matter how fearful we are or what comes our way. We have HOPE because we know that research is ongoing, and for the first time in 50 years, there are breakthroughs which lead to better treatment options. There are doctors that are very knowledgeable about Lupus, that truly care about their patients, who spend countless hours worrying and researching in an effort to find the right treatments for them.  There was once a time when only Plaquenil, Prednisone, and chemotherapy were available; today there is also Humira, Benlysta, Rituxin and IVIG; for the most stubborn and invasive of disease processes, there is even stem cell transplant on the horizon. Perhaps one day soon, it will be available in this great country.

My prayer for you today is that you don’t lose heart, that you hold on to hope. I have found that holding tight to my faith in God through Christ Jesus has made a huge difference in my ability to cope. Through all that I have been through (and it has been a lot), God has never failed me and has always, always proven Himself faithful. When I have been at my weakest and most ill, He has worked miracles, lifted me up, and breathed new life into me. When my money ran out and I didn't know how I was going to pay my bills, He made provision. He is Jehovah Jireh -- the God who provides, Jehovah Rapha -- the God who heals. He is my rock, my strength, my foundation and my refuge. He IS my Hope! May He bless you with all you need to make it through with courage and grace…day by day, moment by moment.

God bless you, I love you...

“Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go.” (Joshua 1:9)

Changing Mindsets

~"Let the words of my mouth and the meditations of my heart be acceptable in Thy sight, O Lord, my rock and my Redeemer." (Psalm 19:14)~

Negative self talk. We all do it, right? Well, I do anyway, and I have for years. "I'm fat". "I'm skinny". "I'm ugly". "I'm sick". "No one cares". "I'm worthless". Ugh...it even makes me weary! And the worst part of it is that I know better! As a woman of faith, I know what the Bible says about how significant I am in the eyes of God! Throughout scripture, it is very clear: "The Lord your God is in your midst, a victorious warrior. He will exult over you with joy, He will be quiet in His love, He will rejoice over you with songs of joy." (Zephaniah 3:17); "How precious also are Thy thoughts to me, O God! How vast is the sum of them! If I should count them, they would outnumber the sand. When I am awake, I am still with Thee." (Psalm 139:17-18); "'For I know the plans that I have for you', declares the Lord, 'plans for welfare and not for calamity, to give you a future and a hope. Then you will call upon Me and come and pray to Me and I will listen to you. And you will seek Me and find Me, when you search for Me with all your heart.'" (Jeremiah 29:11-13); and "For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord." (Romans 8:38-39).

God loves me and wants only good for me -- I know that! But I look in the mirror and hate what I see. As the effects of aging, illness and medications take their toll on my body, my inner self takes note and fights against every flaw I see. And, unfortunately, I voice my opinions -- quite strongly, in fact. The other day, I stopped mid-rant as a memory flooded my mind. It was another time, another place, many years ago -- a time when Lupus and medications had ravaged my body to the point where, even if you'd known me for years and saw me on the street, you would not have recognized me. I remember grieving. I complained about the fact that I was sick at all, and lamented over the way I looked. I felt ugly and unloved, confused and bewildered by the physical changes I was experiencing. Oh, I remember countless, sleepless nights filled with pain, nights when I felt God calling me to pray for others, and I felt closer to Him than ever. But there was still that nagging question, and the negative thoughts that followed...was I not worth anything? And furthermore, why hadn't God been listening to my prayers for delivery from my own situation, anyway? Hadn't I prayed and prayed for things to get better -- even for healing? At the time, I failed to stop, take a breath, and consider that perhaps I was a voice, an instrument, a vessel that God was using for His purpose and glory. All I could focus on were the negative aspects of my situation. I remember lying in bed and crying over my lot in life when my youngest daughter, who was 11 or 12 at the time, spoke with such wisdom that I was astounded. She lovingly told me that I was wrong. And then she opened the Bible and showed me in scripture why I was wrong, reading "...who are you, O man, who answers back to God? The thing molded will not say to the molder, 'Why did you make me like this', will it?" (Romans 9:20). Wow. I was speechless. I knew she was right, so I decided that no matter what came my way, I would do my best to trust in the God of my salvation, to be content in whatever circumstances in which I find myself, and to stop the negative self talk.

I would love to say that I have succeeded in my efforts to be completely positive, but sadly, that is not the case. Pain, weakness, medication side effects, and exhaustion get to me from time to time, and I falter. It's frustrating to know what is right to do and fail so often to do it. And that is also the beauty of having a relationship with my Creator, my Adonai, Jehovah God. I know He loves me, He watches over me, He holds me with His right hand of Righteousness. I am never alone, never without grace and love, and yes...even altogether lovely.

May God bless you with love and grace, and may you know that you are loved...