Thursday, May 8, 2014
Too much time has passed since I updated here. About a month ago I became very sick and hospitalized for several days locally. Not long after I headed to Maryland for 12 days of treatment in the hospital in Lanham. During this time the web designer for my new blog went on maternity leave, and I did not have the mental stamina to move forward quickly enough to finish. For whatever reason God has me pecking away at word documents and continuing to post here at our humble Team Danica for a bit longer. I must write. It is one of the few things I am sure of in continued storms. Over the winds and waves I hear Him clearly. "Let the redeemed of the Lord tell their story." (Psalm 107:2) I have tried to quit. Each time God has specifically brought people into my life who I do not personally know telling me something of this feeble attempt to honestly share my heart and life and the Grace of God surrounding it has led them into a deeper place with our Savior. I began writing here in hopes even one child would be helped or one family might avoid the costly mistakes we made early on in seeking care for our Danica. It has grown into much more than this. I have pulled back at times because of criticism or my own personal doubt. This baring of one's most intimate physical, mental, emotional and spiritual self is not easy work. Still, I am given more resolve than ever by meeting so many of you face to face and through your emails and notes asking me not to stop.
I am almost through what I know I will look back on as three of the most grueling weeks of my life. I was admitted to the hospital in Maryland on April 21st for five plasmapheresis treatments. These required a break every other day for my body to rest and recover, making the stay away from my family long and lonely. I had a Quinton catheter placed in my neck for the treatments. A huge machine would cycle my blood out of my body separating the "bad" plasma and using a plasma like substance called albumin along with calcium it would replace my blood back into my body. I entered the hospital with some very severe symptoms including horrible pressure in my head, bulging right eye, twitching eye and face, twitching and jerking legs, extreme racing thoughts and OCD behavior, thoughts of self harm and a hopelessness I have only ever been able to describe as demon like. I've written about these symptoms before. Most recently I began to understand many of them were resulting from infections embedded deep in my body (think loose connective tissue) and attacking my brain (again, think loose connective tissue allowing the blood brain barrier to be crossed.) As many times as doctors had tried to give me a psych diagnosis I fought it vehemently, because these symptoms WERE NOT ME. I was helped by drugs targeting psych symptoms, but I was not getting any more well. Actually, I was getting sicker and sicker over time. After nine months of targeted treatments that failed and a bad flare my doctor took a chance on me.
This hospitalization and treatment was harder than any of my surgeries. We had some negative static from a few after I had made up my mind to move forward. This along with a lack of his own research and knowledge caused doubt and fear in Dan. My admission moved slowly because the hospital was preparing things for this rather unusual course of treatment, and it caused a rise in anxiety and a messy goodbye between Dan and I on the first night I was there. I felt VERY alone. I did not ever question the science of what we were doing, but I was hard on myself for leaving my husband and children again. I felt guilty for paying for a deposit, hotel costs, flights and rental car knowing their would be 40% my insurance would not cover out of network. Still, in all this, I felt like I had no other choice. I believed and still believe God led me to this opportunity at this time in this place for reasons I could not fully see. The most glaring reason being a chance for healing I had been pleading with my God for. I had to try.
There are many amazing details of God's specific care over me during my time in Maryland and stories of beautiful relationships seeded before that grew and new ones formed. I am committed to sharing them in the next week or so. I had my fifth IVIG infusion today. These are targeted immediately after my plasma exchange to give me the best chance at fighting infection and strengthening my immune system. I had one in the hospital last Friday and have had one each day this week through home health care. My sixth and last infusion will be tomorrow afternoon. I am so grateful for your love and prayers. So many of you have reached out to see how you can help or support. I have been solely focused on my treatment and not caught up in communication and coordinating even the most needed help. My family has done very well maintaining their own routine with the love of my dad and mom.
I called this a "last ditch" effort. I went quietly. I stayed quietly. I took the risk, because the only thing worse than nothing getting better is things getting worse and wondering WHAT IF I had fought harder and longer. I won't give up. I realize this only continues to be brave for so long. The tight rope between acceptance with grace and defeated resignation is one I walk every day. The net underneath is the HOPE I can be better for His glory. I'm holding on, but I'm not afraid to fall. Either way I will have the peace I need, because I tried, tried, tried.
Posted by Monica Kaye at 10:39 PM