Monday, February 4, 2013

overdo updates

This post is long overdo. I have avoided it for so many reasons. Here goes.
When Justin was newly sick... every appointment was exciting and interesting. We visited specialist after specialist from here to Cleveland and we just knew that every appointment was going to be THE appointment. It was going to be the doctors appointment that had all the answers. We were going to walk out with a fresh outlook and a miracle medication. Jesus was going to be in the doctors office and use the physician to heal him. Every day we boasted with this excitement.
Twenty months later and no less than 100 appointments later...we havent had THE appointment.
We have had many many many many appointments to discuss what has gotten worse or what has stayed the same or what new worst thing we should be looking forward to. Sometimes, no, all the time this is hard to explain. The hardest question in the world to answer is "How is Justin doing?" I never know where to start. I never know what to say. I never know if I should smile and say GREAT or cry and tell the truth. I have a few girls that live it with me daily, but the rest of my friends/ prayer warriors/community have to just guess what is going on. Or catch pieces of updates from here and there. For a year I poured every detail into this blog. It was wonderful to have our community constantly know what to pray for...but that was exhausting. I had to remain so positive (which some people think is super natural for me and some people...well they know the truth about that). I had to find a way to tie each diagnosis, medical term, scary and sad post up with a pretty little bow. Sometimes that came easily and sometimes... well not so much.
I switched gears for awhile and tried to focus on my heart. I cannot change Justin's medical condition, but I can change my attitude about it. I can stand in this spot and watch the rain of grace and mercy pour down upon me and my family at the most unlikely times. My life is covered in unmerited grace. A grace I will never understand and never be able to reproduce. I am served each morning with a fresh platter of grace, mercy and compassion. Sometimes I sit in dwell in that platter and thank my Father for this gift, but sometimes I run right past it in a frenzy. Sometimes I get caught up in ignoring the reality so I think I do not need to dwell near that platter, sometimes I think I can do it on my own, and sometimes I am angry at the platter (i know, the platter thing is confusing...just bear with). Who can be angry at such a beautiful platter?! Only a very broken person. A person that is so in tune with the Lord's beautiful gifts, but so lost at the very same time. I think I need a platter tattoo. Or not. Whatever.
So what is going on with Justin you ask? Let's recap...and sidenote these descriptions are all from the mayo clinic website. (i get in trouble when i go to non legit websites)
Twenty months ago our lives were changed forever with these horrendous diagnoses (fyi i checked and this is how you spell the plural form of diagnosis...weird i know):

Scleroderma - Scleroderma (skleer-oh-DUR-muh) is a group of rare, progressive diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.Systemic scleroderma (which is the type Justin has) harms internal organs, such as the heart, lungs, kidneys and digestive tract.

Polymyositis - Polymyositis (pol-e-mi-o-SI-tis) is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement. Medically, polymyositis is classified as a chronic inflammatory myopathy — one of only three such diseases.

RA - Rheumatoid arthritis is a chronic inflammatory disorder that typically affects the small joints in your hands and feet. Unlike the wear-and-tear damage of osteoarthritis, rheumatoid arthritis affects the lining of your joints, causing a painful swelling that can eventually result in bone erosion and joint deformity.
An autoimmune disorder, rheumatoid arthritis occurs when your immune system mistakenly attacks your own body's tissues. In addition to causing joint problems, rheumatoid arthritis can also affect your whole body with fevers and fatigue.
Interstitial (in-tur-STISH-ul) lung disease describes a large group of disorders, most of which cause progressive scarring of lung tissue. The scarring associated with interstitial lung disease eventually affects your ability to breathe and get enough oxygen into your bloodstream.   Once lung scarring occurs, it's generally irreversible. Medications can slow the damage of interstitial lung disease, but many people never regain full use of their lungs.

Those are the main issues which have resulted in breathing issues (we continue to praise that he not on oxygen!), aspergillosis (a fungal disease that lives in his lungs...forever), hardened esophagus which results in many digestive issues, fatty liver, lung fibrosis...and so on and so forth. 
He is followed very very closely by his rheumatologist that we love aka dr. f and our family dr. who is able to manage many aspects of his health.  
Justin is not getting better. He has to make random ER trips often for IV meds. He still does his chemo. He still takes 98345983467 medications a day. He still is in pain 100% of the day. He still will tell you he feels fantastic. He still works 98437589347 hours a week. Do not call me an exaggerator. Just don't. 
We have visited all the stages of grief. Several times. Justin hangs around denial and freakish optimism. I hang around la la land where I throw in a little denial, a little self pity, a little reflection and a lot of hope. Ok yes I know those are not ACTUAL stages of grief, but if you havent noticed...I march to the beat of my own drum. And my drum is loud. And it has sparkles on it. So what?
We have received some news recently that is not ideal. There are tests coming up quickly. We are weak, but filled with His grace. It is sufficient. No matter the outcome of any pending appointment....His grace is sufficient. The weaker we are, the more powerful He is. 
Thank you for loving this family. Many of you decided long ago that you were in this with us for the long haul. Without you we would not be able to FEEL his grace. Some of you are newer to our lives and I know many of you do not know us at all. So thank you. Wherever you stand in our lives, we love your dedication to praying for the healing of Justin's body. For the daily healing of our hearts as we continuously mourn the loss of the life we once had. He uses you to mend us. He uses you to deliver his platter. 
Thank you and Amen. 

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