Friday, January 6, 2012
Yesterday, January 5, 2012 was the one-year anniversary of my last day of work. It has been a huge change and transitioning from work to disabled is difficult at best. Trust me, doing nothing for a year is not all that fun and I would much rather be working. Dropping from a full-time salary to a 60% disability income takes a lot of adjustment. My disability insurance company worked to get my Social Security disability started. The bad thing is my disability insurance reduced my disability payments by the amount Social Security pays. The good thing is that I qualify for Medicare in July 2013, if it is still around. We had a large financial loss on the property we owned in Monticello, but the Lord has been good to us and has provided for our needs. Soli Deo Gloria!
It is very frustrating not being able to do...practically anything. Two things help make that fact a little more bearable. First, I am not and never have been a stressed or depressed person. Second, I just don't feel like doing anything most of the time.
To be totally honest, my condition really frustrates me at times when I go to church. This is nothing against Jim or the staff--Jim is doing an excellent job. It is felt frustration that, "I should be me up there preaching, I should be up there leading the church, I should up there in charge, but I cannot because of this terrible disease!" OK, I'm human, very human. I acknowledge my feelings and am dealing with them. I know the Lord has a plan and purpose in all of this, I just don't know what it is. Until then, we keep moving forward doing what we know to do, trusting God for the future.
Through my book, blog, FaceBook, and other support websites, I have corresponded with numbers of individuals from all over the world suffering from Myasthenia Gravis (MG). Each person faces their unique struggle and challenges, but always against the common enemy of MG. I hope my own journey provides strength and encouragement for them as theirs does for me. It is still a journey through sickness and faith for me and I am sure learning a lot along the way.
I have learned to adapt to the pain, tingling, tremors, numbness of the small fiber neuropathy. The weakness of the Myasthenia Gravis is self-limiting. In other words, it stops you in your tracks whether you want to stop or not. The breathing and vision problems still plague me greatly. Not being able to breath because my lung muscles simply quit working is the most disabling thing of all. Like it or not, I can cope with all of these issues.
What I have the most trouble coping with is known as "emotional liability." As mentioned in previous posts, I may be developing an additional neurological condition called Pseudobulbar Affect (emotional liability). In simple terms, it means I have crying spells for no apparent reason. I am not depressed or sad, I just have waves of crying flood me four or five times a week. This is so not me! Each episode usually lasts from a few seconds to a few minutes--but it seems like an eternity. A trial of medication to treat this condition almost put me in the hospital over Christmas because it worsened my MG severely. What I dislike most about the "crying" is feeling totally out-of-control. On top of all this, "chemo brain fog" has set in too.
Cathy has been wonderful in taking care of me. She drives everywhere we go. She cuts grass, does the yard and house work (I am thinking about renting her out for chauffeur and lawn care services). She helps with all my medications and makes sure that I take care of myself. She can even figure out what I am trying to say when I can't find the right words to speak because of the brain fog. She is there for me and I really appreciate and love her. Kerrell and the girls have also been a blessing and help a lot.
Since January 2011, my medical expenses have totaled well over $300,000.00. Thank the Lord for good insurance! I have had: 120 grams of IVIG given over eight days of infusions, twelve plasma exchanges, numerous pulmonary function tests, echo cardiograms, sleep studies, EKGs, chest X-rays, a HiRes CT scan, multiple visits to several physicians, three days in the hospital, one emergency room visit, five Cytoxan chemotherapy infusions, and a partridge in a pear tree. I currently take fourteen prescription medications and have one more Cytoxan infusion scheduled in January 2012. At that time, my neurologist and I will decide the next best option, which looks like another six months of chemotherapy. My current condition is about the same as reported in my blog of Thursday, September 8, 2011.
Thanks again for all your prayers, love, encouragement, and support.
This past year has indeed been a year for transition. Hard? Yes. Uncertain? Yes. Scared? Yes. I play the game of "What If," which is not a good game to play. What if the cars have mechanical problems? What if the couch falls apart when someone sits down? Who is going to help with the little things around the house that I can't fix since Kerry hasn't the strength to fix? This game of "What If" will certainly drive you to distraction, headaches, and emotional trauma.
I feel the struggle of Kerry's need to be up there preaching, chairing meetings, developing programs, working on budgets, directing staff, etc. I feel the displacement of being in a new situation myself. I am no longer the preacher's wife and do not have the clout I once had (Laugh Out Loud).
With all that has happened this past year, I needed to reduce my stress level. So at the end of December, I resigned my position and will look for one not quite so stressful (whatever that may be, LOL). I am concerned about my availability to be with Kerry if and when he needs me. Several times this past year I had to leave work early and come home because of medical issues. I have been working full-time for a temp agency and will be placed somewhere again soon, but I may ask for a part-time, or a very flexible assignment, that will fit with our needs.
I have ready many devotionals books which reinforce my belief that God is in control and He has allowed (not caused) this to happen in our family. Why? Only God knows; it is one of those Kingdom mysteries maybe to be revealed later. Right now this is where God has allowed us to be. As I told Kerry, "We don't understand this and certainly didn't want it, but as hard as it is on us, we know God has allowed us to go through this and He will see us through."
Thanks to all of our friends and family. Your concern and encouragement means a lot.