Loss and Transition

Some of you know this by now, but many of you don't. On Tuesday, October 9th, my husband was given notice at his job. His job as a Senior Web Developer is going to be outsourced now, so he's actively pursuing other opportunities. When he called me at work to tell me about it, it was all I could do to not fall apart crying. He loved the man who owned the company, and he wholeheartedly believed in their mission. They also gave their employees the "Cadillac" plan as far as insurance and benefits were concerned. We were never worried about whether this procedure would be covered or that medication would be filled. We knew we would always have a way to get our children the care they needed, and his role gave him the flexibility to work from home. He has been the one to always pick up Lily from school and take care of her in the afternoons. Needless to say, this news rocked our family hard.

On top of that, I went to see the Neurosurgeon, Dr. White, at UTSW, about two possible procedures to help with my Trigeminal Neuralgia. The two procedures are Microvascular Decompression, where they do a craniotomy (brain surgery) and work on the nerves and blood vessels that are causing the pain. The other option is called Gamma Knife Radiation, where they use targeted radiation beams to kill the nerve. They both have varying degrees of success, and they each have their own set of risks. The MVD obviously has more risks than the GKR, because one is an open incision procedure IN YOUR BRAIN...and the other one is an outpatient radiation treatment. These procedures have about a 60%-80% success rate at the most, and that's typically when the patient has no other complicating factors, such as Multiple Sclerosis. With typical, primary TN (meaning TN that is not caused by something else), doctors will typically see some favorable results with these procedures. They fix the issue, then you're done. However, with Secondary TN (meaning it is caused by another problem - in my case, the MS lesions) the results aren't always that great. The doctors could "fix" the nerve issue, but if another lesion grows in an area that triggers that TN pain signal...well, it just pretty much negates the treatment or procedure altogether. Not to mention the fact that I have this pain on both sides of my face, which means I have "atypical" TN. For many TN sufferers, the pain is only on one side of their face. With it being bilateral, they would have to schedule me for two separate procedures, because they will not do both at the same time - this is partially an insurance thing, and partially because they want to test the effectiveness of the procedure on one side of the face before they do it on the other.

This is the machine they use for the Gamma Knife procedure.

Dr. White and his clinical coordinator kept saying, "This procedure is usually the most effective, " blah, blah, blah. Then I would say, "Well, what about with MS?" They would give me this blank, almost uncomfortable look and say things like, "We aren't really sure" and "The results aren't as consistent" and "MS is another animal." So I left their office without scheduling anything, and I'm not really sure I will schedule anything. I'm still debating. I may opt for Gamma Knife Radiation, or I may do nothing. My TN pain has been relatively quiet lately, but I'm getting those familiar shocks again that indicate a flare up is on its way. I guess I'll have to make a decision here soon...

I've been fighting really horrible MS fatigue lately, both mental and physical. Dr. John Schafer, of Mercy MS Center in California, states that researchers believe there are immune system hormones at play in Primary MS Fatigue. Cytokines are hormones that are released during inflammation in your body, and they are what makes you feel weak and exhausted when you have the flu. The process of demyelination and the decline in nerve conduction likely also causes an erosion of muscle strength and endurance. MS also jacks with the nerve pathways in your brain, which means you have to enlist more regions of your brain to do something that would only require one region of the brain in a healthy person. We believe this overactivity wears down your brain circuits, which is what leads to cognitive fatigue. Dr. Augusto Miravalle, chief of the Multiple Sclerosis Division at the University of Florida College of Medicine, says that it's similar to having multiple windows or programs up on your computer at once - it tends to slow down the machine's processing speed. He states, "There are neural structures by which MS patients use networks not normally used by individuals with intact brains in order to compensate for brain damage." (Reference, Vicky Uhland, Momentum Magazine Online, NMSS, link to full article here.) At this point, I'm waiting for my insurance to approve a medication that has been shown to help with MS Fatigue. I'm trying to be hopeful. I can't seem to get enough sleep or caffeine anymore. I find myself struggling more with word-finding, memory loss, and physical weakness. Some days are tougher than others.

This brings me to the topic of this post - as a family, it seems we've been hit with a long season of transition and loss. For me, I lost what I saw as the perfect picture of health and wellness, when I was diagnosed with MS. With every flare, my body deteriorates more, and I find myself wishing I could just go for a run like I used to, or work harder at my workouts, or just not have to deal with pain anymore. I miss who I used to be, but I guess that's where the transition comes into play...and transition is hard and painful and sticky. Corey's in that same place with his job search, as he spends almost all of his waking hours searching and preparing for a new opportunity. We're hoping and praying that he will find a great company, and that this will happen soon.

Neither of us really want to be here right now - having to find a job, having to adjust to this normal that is a chronic illness, having to see less but trust more. It's just HARD, ya'll. Don't get me wrong - I'm incredibly grateful for our home, the health of our kiddos, my job, our church family, my CG friends. But sometimes I still get stuck in the "How much more do You think I can handle, God?" When I'm laying in bed, my legs burning from nerve pain, desperately trying to find a mildly comfortable position - I sometimes tell Him how angry I am that He let this happen. When Corey got the notice about his job, I was even angrier. "Why would You do this, God? How the hell do You expect us to survive? What are you doing?!?!?"

I'm not saying we shouldn't trust God with our lives and the way He weaves our tapestry. But I AM saying that He is big enough to not be bothered by our angry complaints and our tearful screams to heaven. He has seen Corey and I through many a rocky road, even though, at the time, we couldn't see our hands in front of our faces. But we always ended up looking back and marveling at how God made a way.