~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
