Sunday, August 17, 2014

The thing you think you cannot do . . . again

Dear ones,

I am  much too fatigued to write a real post, but I understand from your emails and messages you care deeply about how I am and the treatment I am having this week and next. 

Knowing how quickly my symptoms are returning I spent much of last week orchestrating and fighting for a second round of plasmapheresis to be completed HERE locally instead of me travelling to Maryland and being admitted to the hospital.  I can clearly see how God was in each of dozens of phone calls with my insurance case manager, local hospital, local pheresis nurses, Maryland doctor and nurse and others to accomplish what initially seemed impossible. 

During the week I was able to push myself to attend jr. high orientation with my Laney.  She begins 7th grade on Tuesday.  I was able to carpool for her volleyball practices some days.  I was also able to throw a celebration party for a handful or the many friends locally who have walked through years of trials with my family and I.  This night was perhaps the best part of my entire summer.  I found great joy in planning and decorating.  I found even greater happiness in showing hospitality to these amazing women who have loved and cared for me. 

Today my pain is at least a 7 on a 1-10 scale.  My hands and feet and body are swollen with a crazy inflammation.  My brain and hands and feet are burning like someone poured gasoline on a fire.  I am crying.  I really don't cry anymore.  I can't stop crying. 

Quite simply I am devastated to be losing the health I claimed so richly the past few months.  I am broken watching my husband and daughters grieve again.  I feel helpless to support them emotionally when I am barely able to push through myself.  You might think this becomes easier with time or our coping skills become better each relapse.  It's simply not true. 

Tomorrow is my last day with the girls.  I decided to wait until Tuesday, while they are back to school, to have my Quinton catheter placed.  I will begin 10 days of treatment on Wednesday.  Every other day I will go to Summa, Akron City Hospital and have all my blood emptied out of my body to separate the plasma and then new plasma cycled back into my body.  Like before, the hope is these five treatments with a day of rest in between will rid my body of the viruses and infections building again. 

Will you please pray for me? My appointment is at 12:30 pm on Tuesday.  My Janet will take me.  I am frightened to enter a hospital who knows so little about my personal case and the many strange things EDS and other conditions dictate in my care.  I am terrified for the Quinton catheter placement.  I was traumatized when my well known interventional radiologist  placed mine in April.  Lidocaine rarely numbs me.  It's an EDS thing.  Even with a big shot of Lidocaine in my neck and Fentanyl, Valium, and Benadryl in my IV I could clearly see and feel the knife making the cuts in my neck for the catheter.  I need to make sure some meds have been ordered tomorrow, but I'm not hopeful it will go any differently.  I have some stenosis on the left side so repeating on the right side is the best choice.  This line in central to my heart.  It is very uncomfortable in placement and size.  Coming home with it is something I am also anxious about.

I will confirm tomorrow the times for my treatment Wednesday, Friday, Sunday, Tuesday and Thursday.  I will be asking for help driving me to and from treatment and also with my girls after school for these days.  If you are able to help please let me know when and how, and I will make a schedule based on needs and get back to you.  Any meals on these days would also be helpful.  I will need to sleep after treatment.  Deciding to do this outpatient has so many benefits but also drawbacks, because I will be here and my family has become accustomed to me up and out of bed again.  I hate this is happening the first few weeks of school. 

I don't know what this means financially.  If I had to go to  Maryland I would not have been able to proceed.  We are at the complete dead end when it comes to making arrangements to pay for past bills and continue to move forward with new ones.  I'm candid about this, because I believe there is no shame in fighting for your life.  There is no price on the past three months my treatment gave my family and I.  NO PRICE.  Will you please pray for us to continue to walk outside the tent and find manna and know it is ENOUGH . . . more than ENOUGH for today.  Often God's provision has been how we know for sure I am supposed to move forward.  I will also confirm tomorrow any initial out of pocket money we need to pay.  As I type this I watch bird after bird flock to our feeder.  Every bird I see reminds me of the verses I cherish, "Look at the birds of the air; they do not  sow or  reap or store away in barns, and yet your heavenly Father feeds them.  Are you not much more valuable than they?" (Matthew 6:26)

Thank you for praying for Dan, who shut down yesterday to the point of sleeping for hours.  This is so hard for him.  Please pray for my girls as they begin their school year with a momma who is once again fighting for her health.  We know for sure we can do hard things through Christ who strengthens us.  Please pray we can do it AGAIN. 

1 comment:

  1. Monica,
    I am PRAYING for you, not just praying, but really PRAYING. The Lord will give you strength. You are so amazing. So strong and full of grace. Your husband, parents and children are absolutely BLESSED to have you. They are being taught well, just by seeing the life you are living. I hope the treatments go well for you. Stay strong and keep your spirits up, as we know just how important it is during battles with our health, to be positive. You CAN do this again, the Lord will provide your EVERY need! And many who know you are blessed and encouraged as we see you continuing to fight, and continuing to proclaim the goodness of God. I love you and will be thinking of you often this next cpl weeks and praying for you as well.