Monday, June 10, 2013

If you don't have your health you don't have anything

I used to say this all the time.  In some ways it is true.  When you are chronically sick and in pain life is overwhelmed by a shadow that will not move.  I know God has changed my heart and mind through the long years, because I have surrendered to the truth I may never be any better than right now and in the same breath I fight because I refuse to lose hope.  I also have learned to focus in on blessings in the midst of my own suffering.  There is almost always a light shining near me no matter how I hurt.  I feel horribly this morning.  I could name the many ways my body is screaming at me, but some of them would be redundant to other posts and some would just gross you out, so I won't.  The point is as I sit here in pain that is my day I hear Danica playing music in her room and pretending with her stuffed animals.  My pup is snuggled beside me.  I hear soft rain outside on the deck of our home with sweet birds chirping from the trees.  Laney is still peacefully sleeping in her bed.  My faithful husband has gone to work at a job God has given him for over five years.  So much grace surrounds me I can scarcely breathe.  I have everything.

I'm sorry.  It has been weeks, maybe even months, since I promised a health update.  I am finding it more and more uncomfortable to talk about this stuff online.  Still, so many of you ask and email and message me to know how to pray and support our family during ongoing crisis.  I am reluctantly going to try to update in general terms what is on our plate right now.

Over a week ago I went into my monthly flare of endometriosis pain.  It has been getting worse month to month.  I have been managing with days in bed, torodol injections, dilaudid and many tears.  I have an appointment with Dr. Falcone on Friday, June 27th.  He is the surgeon at Cleveland Clinic who removed the endometriosis from my bowels after my hysterectomy.  His office has my number on a sticky on the phone to call if anything comes open or they could work me in sooner.  It is time to let him go back in.  I have a remaining ovary and the pros and cons of having no hormones with EDS are very clear to me.  The past months have made me sure whatever increased disability is caused by cutting off all hormones increasing my bone loss and decreasing collagen production is a fair price to pay to have any relief from this pain.  Endometriosis is an insidious disease.  At stage IV, it is as aggressive and wide spread as cancer, but besides operating over and over again which can actually spread the cells, there is still very little treatment.  I am hanging on for my appointment to make a surgical plan.  The colorectal surgeon I saw last month wrote notes to Dr. Falcone about his department dealing with my rectocele.  This is my large intestine prolapsing into my vaginal wall.  I am hoping these surgeries could be done together.

Thursday I ended up back at my general doctor because my belly became so distended and my pain even worse than I had been dealing with.  I had diarrhea and nausea.  I was sent for a CT and there was free flowing fluid in my pelvis.  Because of the pain and remaining ovary it made sense it was a burst cyst.  My wise doctor also wanted me to do a cdiff sample.  My immune system is so weak I am constantly treating an infection of some kind.  The monthly wide spectrum antibiotics could surely have cause a cdiff infection.  Saturday I continued to have stool symptoms and pain but my swelling had gone down.  I was exhausted and my bowel sounds were so loud they made my family and I laugh.  I took a cdiff sample to the hospital so the word is out on this.  I am still not venturing far from the bathroom or eating much.  My abdominal pain is sharp and constant.  All this inflammation and pain causes many of my other symptoms to flare.  I have had increased instability, particularly in my neck and back.  I've had increasing headaches.  I know everything about my body is a domino effect.  I try to document my issues without becoming too excitable.  There are always little things all over my body.  A spot on my clavicle that will not heal doesn't seem worth mentioning but when the doctor asks what is under the band aid she instantly thinks to test for MRSA.  This is one of the culprits of my enduring antibiotic use.  My actual rectal issues have improved greatly with the special medicine from the Cleveland Clinic doctor.  I thought the tear was pretty much healed and then this awful bout of diarrhea came and now I am in the same place it seems.  When you see me and think I look good please show me a little grace because underneath my strained smile and biting my cheeks I have so many things hurting me.  My joints are ever popping and cracking.  I am dizzy and have trouble remembering words.  I am tired.  I am bone tired from never ending pain from so many origins.

Are you waiting for good news?  Remember my appointment with Dr. Grubb, the cardiologist in Toledo?  The new medication for my POTS symptoms has helped so much.  I have the least amount of POTS symptoms I have had in years.  Praise!  I attribute the really good weeks I had last month specifically to Bystolic.

This scratches the surface of my health, but it is the top issues this week which I always say is about all we can focus on.   It's like putting out fires.  

Many of you have asked how we are financially with the continued strain of all these medical appointments, procedures, scans, trips, etc.  The truth is we are back to a tough place.  We had help from Rocktoberfest for several months with our mortgage.  Without this love we would not have been able to pay the deductibles we faced.  My claims for this year without any major surgery are already over $65,000.  I get bills I cannot even begin to pay.  I owe my hematologist money that needs paid before my next appointment.  (I have needed expensive iron infusions this year).  I was dismissed from my gastroenterologist's practice for an unpaid bill.  A new bill for over $2,000 for the MRI I had out of network in Maryland just came last week.  When I am as sick as I have been with pain I shove all this into a drawer beside my bed and we balance on manna.  Dan brought a check for $30 home from church yesterday.  A family who doesn't have much still remembering us and our struggle.  It brought me to my knees.

A need in the next few weeks is a trip we are planning to take to Maryland as a family.  I have an appointment with my neurosurgeon, Dr. H, on Friday morning, July 5th.  Before this appointment I have to have a new CT of my cervical spine to assess fusion, stability and some other markers of healing.  I was asked to participate in a long term research study of patients with EDS and craniocervical instability.  The director is Dr. Clair Francomano, the foremost geneticist in the study and treatment of Ehlers Danlos patients.  Dr. H is a co-director.  This study plans to follow the participants for as long as 25 years.  There is no compensation for participating in the study.  Having a scan ordered and a physical appointment with Dr. H is particularly helpful for me at this stage because of my symptoms.  Although I will not be charged for the office visit, the cost of travel and the portion of the scan my insurance will not cover is my responsibility.  People may wonder why with everything else going on would I consider doing this.  The answer is clear.  Our hope remains.  When I see my Danica suffer her continued pain I know I must do this.  I receive emails from moms who have sat and read the entire archives of this blog looking for answers for their own children.  I must do this for them.  I must do this for my grandchildren who may inherit this genetic code.  It's important.  I make plans to do all kinds of things to try to help in the world and cancel because my body betrays me, but I must do this.

If you want to help I have humbly added the "Donate" button back to the top of this blog.

Most of all you have asked how we really are.  You lovingly ask about our hearts.  I have many unanswered emails, and I pray you will forgive me for only focusing on what I can do in this pain. The girls are home for the summer now, and I am needing to push myself more physically to care for them throughout the day.  When Dan gets home he must take over until they are tucked in and we can rest and begin again.  Remember how discontent our hearts often were at the beginning of this journey, especially when summer would come and the world of facebook and photos of vacation and the zoo and concerts and swimming and a hundred other fun things would flash across our screen reminding us of what we could not do?  There is now very little sadness left.  It is a beautiful thing to find contentment in this.  We still feel as if our home is a vacation.  I wish you could hear our prayers of gratitude every single day for this place.   We don't take a moment for granted.  We have found a true joy in watching those we love live out loud while we have a different kind of life altogether.  This is grace.

Thank you.  As always we covet your prayers as the day to day is grueling.  We hold on to the perfect faithfulness of God and the Hope that will not disappoint as we move forward and do the next thing. We love you.

Oh, and if you are healthy today.  If you feel well.  Don't take it for granted.  Do something good.  It is a gift.

1 comment:

  1. May you find peace and pain relief as you take each breath today. Your needs are being upheld in prayer before our merciful God.