Dear blog friends —
Thank you for your patience with my lack of writing. The last eight months have been some of the hardest since my return from Sierra Leone and the brain has simply refused to engage in writing. Months of doctor visits, which seemed like dead ends and failure, in the Lord’s view were only a beginning which is now seeing its culmination at the Mayo Clinic in Jacksonville, Florida. Now I finally feel that I’m truly turning a corner and only now do I sense the opening of a broad new vista which I couldn’t have envisioned. I will use a series of blog posts to show you the wide new place to which the Lord is leading me and how I arrived here. I believe the Lord is asking me to be open about my health struggles — something which I wouldn’t choose to do on my own. But how I pray that my experiences will be a help to others who are in any affliction, and I’m already seeing this desire fulfilled as others have contacted me seeking encouragement in their own dark valley. It’s for this purpose I write. You will see the tones and topics of the blog begin to shift as the course of my life changes. But with the Lord, this journey of redefining and renewing will be a grand new adventure!
✥ ✥ ✥ ✥
Sunday June 16, 2019
I’d rather be in church, but instead, I’m laying in bed propped on my ubiquitous “pillow pile.” The clock is an irritant with its constant reminder that life, my small vapor, continues to tick frustratingly away with too much of it spent in bed. These two years of recovery have felt like an eternity. I confess that at times it has seemed that the Lord was so very far away; I’ve felt forgotten, as though I couldn’t find him at all and with the Psalmist I cry out —
How long wilt thou forget me, O Lord? for ever? how long wilt thou hide thy face from me? … how long shall mine enemy be exalted over me? (Psalm 13:1-2 emphasis mine)
My great and bitter enemy? Pain. Unrelenting, unforgiving, head-to-toe PAIN.
My health record could resemble a jigsaw puzzle that has been carelessly dumped on the floor — a confused jumble of pieces and colors but with no order, nothing making sense. Until now, that is. Until a wonderful team of doctors at the Mayo Clinic entered my life and looked at the whole rather than the chaotic parts. These scattered pieces, most of which have been present since childhood, have finally come together to make the picture of a rare connective tissue disorder: I have hyper-mobile Ehlers-Danlos Syndrome (EDS). In short, my connective tissue is overly elastic and doesn’t do its job. Jobs like keeping my joints in place causing “subluxations” — painful misalignments of joints just short of full dislocations. This explains why I could get a lot of laughs from my friends by playing the human pretzel! I used to do some pretty crazy stuff! At the time it was funny but I didn’t realize the damage I was doing to myself. This also explains how I can hurt myself in bed as muscles which relax in sleep allow joints to slip part way out. Mornings are my worst time of day. And it sheds light on the results of my recent cardiac catheterization which revealed a small aneurysm and other vascular concerns. These aren’t uncommon problems for people with EDS and will now be closely monitored. Easy bruising. Spontaneous and severe nosebleeds — to the point of hospitalization. Debilitating headaches because my skull and neck are unstable. And EDS is even a contributing factor in my Chiari Malformation, the sagging of my hind brain down into the spinal column which required extensive brain and spinal surgery 22 years ago. [Not everyone with Chiari has EDS and vice-versa but they can be present together] Irritable Bowel Syndrome (connective tissue is everywhere in our bodies!). Clumsiness and frequent rolling of ankles along with dislocated toes … the list is long and varied! Now as I look back I can see how the seeming mixed bag of pieces all fit neatly into place.
Suddenly, things are making sense! Suddenly — at age 57 — the answers I have been searching for throughout my life!
Including years of unrelenting, widespread, chronic Pain.
Complicating my EDS diagnosis is the concurrent diagnosis of fibromyalgia. I’ve had a thorough screening by the “fibro” center at Mayo Clinic and they’ll be working with me to manage these two conditions together. As with the many other doctors I’ve seen since my return from Sierra Leone in June, 2017, my Mayo team believes that the abuse to my body by the many tropical fevers, especially the cerebral malaria and Dengue fever, have played a part in greatly exacerbating my other health conditions, piling on yet more Pain!
How long wilt thou forget me, O Lord? for ever?
As I lay on the pile of pillows, crying to the Lord, some answers from scripture flood my soul and give encouragement.
And if ye go to war in your land against the enemy that oppresseth you, then ye shall blow an alarm with the trumpets; and ye shall be remembered before the Lord your God, and ye shall be saved from your enemies. (Numbers 10:9, emphasis added)
To sound an alarm during time of war is a call to arms in defense against an oppressive enemy which has invaded the land. The beautiful silver trumpet on which to sound my alarm is the Trumpet of Prayer. When I sound that alarm, I shall be remembered before the Lord my God! Of course doesn’t say how soon my help will arrive but surely, I am remembered and help is coming! God is doing his part.
Now, how do I do my part?
Rest in the Lord and wait patiently for him … (Psalm 37:7)
When a man’s ways please the LORD, he maketh even his enemies to be at peace with him (Proverbs 16:7, emphasis added)
My part is to keep my ways pleasing to the Lord. As I patiently wait for the Lord’s help in the battle against my bitter enemy, I am simply to stay faithful to the things I know to be true and right. Bible reading, prayer time, church attendance as I’m able, being a blessing to others in spite of Pain. And service with my husband under the call of the Great Commission. Quitting is not an option. Fainting in the day of adversity only shows my strength is small and my faith little. These topics and more will be discussed throughout our series of blog posts. The Lord has given me so much light over these last two years of testing and trial. Light which would not have come had he relieved me the instant my alarm was sounded. Adversity brings growth if one stays the course.
And just how will I make peace with my life-long enemy? Ehlers-Danlos Syndrome has no cure; daily, diligent, ongoing management of symptoms is my only course of action with these two conditions.
With the help of my Mayo team I’ll learn, through a variety of methods, how to arrive at a peace treaty with Pain despite the continued presence of the enemy.
- Physical therapy — slowly introducing helpful not harmful exercises thereby strengthening muscles to take up the slack in my joints.
- Occupational therapy — learning how to accomplish common daily tasks while being mindful to move properly so as to not “pop” anything out of joint or over tax loose tendons and ligaments.
- Time management and moderation of activities — being mindful to rest when needed but also learning how to properly push when I’m able.
- Getting back into LIFE! — It’s going to be a balancing act! I’ve taken my necessary break and now I’m excited about life again. I have a lot of notes for both writing and artwork projects. It’s time to move forward and take new ground.
So watch your inbox! New posts are in the works. I intend to win the daily battle as the the Lord shows me how to subdue the evil invading enemy — Pain — and keep it from being exalted over me!!