Tuesday, August 12, 2008

Living Fully Through Life's Trials

I've had this blog name reserved for some months now, ideas swirling around in my head. It's taken thoughts of National Invisible Chronic Illness Awareness Week coming this September 8-14 to spur me on to finally take this blog live.

Harvesting Hope from Heartache™ is a concept that captures many aspects of my life. I was blessed to be introduced to Jesus Christ at a very young age. By understanding my inability to reach His standard of perfection on my own and asking His to be my Guide through this life, my childhood was full of life, enthusiasm and hope. When painful realities of adulthood struck, my faith was tested, nearly shattered more than once. Yet hope in Him has ultimately been the anchor to my soul, even when that anchor rope seemed frayed and worn.

This blog is dedicated to hurting hearts that are reaching out for hope in any aspect of life, giving special attention to the heartaches God has carried me through - the loss of health, loss of friendships, loss of livelihood, loss of fertility and multiple losses of our children. It will share articles, resources, links and encouragement for seeking hope in the midst of life’s darkest moments. I will never sugar-coat the realities of pain, but I also cannot leave my readers floundering in hopelessness. Please join me in learning to harvest hope together from our heartaches.

Before I begin sharing resources, let me give you a little background about my own story. We never lived anyplace longer than two years until I hit high school, so I clung to my relationship with Jesus through all the ups and downs of continual moves and the accompanying need to let go of and rebuild friendships over and over. But our relationship was never fully tested until shortly after my 18th birthday. I woke up one morning feeling fine, and by mid-afternoon my life had changed forever, though I really didn't understand how dramatic the change would be for a while.

I had just moved again, this time away from home and family for the first time. I was on a crazy schedule with college dorm life and cafeteria meals, so it wasn't surprising that when "the flu" swept through campus, knocking 2/3 of the student body off our feet, I was put out of commission as well. The unsettling part came when everyone else returned to normal life while I spent the majority of the semester shivery in bed or counting the painful minutes until class would be over so I could put my fevered, aching body and swirling, foggy head back to bed.

That was 18 years ago this September, literally half my lifetime ago now. For my entire adult life I have lived under the shadow of an invisible chronic illness. It took many months to reach the diagnosis of Chronic Fatigue Immune Dysfunction Syndrome (CFS or CFIDS, sometimes also called Myalgic Encephalomyelitis or ME) and years to eventually stack up my “grocery list” of additional diagnosis also including Fibromyalgia, TMJ, endometriosis, polycystic ovarian syndrome (PCO, PCOS, or PCOD), neurally mediated hypotension, and the list goes on and on…

[Update: In October, 2009, I learned that I am positive for a newly-discovered retrovirus liked to Chronic Fatigue Syndrome. This virus was originally named XMRV – Xenotropic Murine leukemia virus-Related Virus but further research unfolded an entire family of closely related Human Gamma Retroviruses (HGRVs). It is very possible that I have actually carried one or more HGRVs since childhood, perhaps even acquiring it many years before the full onset of my CFIDS symptoms that I experienced at age 18. (HGRVs are only the third known infectious retroviral family in the human population, along with HIV and HTLV.)]

I am among the fortunate who have actually been given answers, even when there is no cure. Many are debilitated with such painful conditions, yet live for years without understanding why, struggling day to day to cope in a world that only sees a healthy looking body without many (sometimes any) obvious signs of illness. They are accused of being lazy and no one understands the effort simply to get out of bed and put one foot in front of the other. Few see the days we can’t get out of bed at all. We are told “You must be feeling better because you look so good!” and we paste half-hearted smiles on our faces because it just isn’t worth expending the effort to try to explain the daily reality of living with invisible illness.

Just a month after getting sick, I was blessed to meet a man who didn’t define me by my illness, who loved me not for what I could or could not do, but for who I am. Neither of us had any idea that we were up against a lifetime of illness, but as the months of grueling testing passed, we were faced with the very real potential that this yet-unnamed villain might easily prove to be fatal. I tried to free him from our engagement, yet he stubbornly refused to leave my side. We will celebrate 16 years of marriage this weekend and he has been such a blessing through the many ups and downs of life including the loss of our first business, deaths of many extended family members and all the daily trials of living that continue over and beyond chronic illness.

Fully knowing that parenthood could be a challenge given my poor health, we both desperately wanted children and (some say foolishly) jumped into the pursuit of parenthood shortly after our wedding. Seven and a half years later we were thrilled to bring home our 4 pound, 13 ounce miracle. The road to him took us through one miscarriage, seven adoption losses, surgeries, fertility drugs including daily hormone injections, Hyperemesis Gravidarum (severe nausea and vomiting during pregnancy that goes far beyond typical "morning sickness") and an almost indescribably emotional roller coaster of grief, hope and yet more grief. Infertility drove me to almost let go of the hope anchor all together, at my darkest hour even seriously considering ending my own life.

After two more miscarriages and being given less than 5% chance of ever conceiving again even with medical aid (with even less hope of carrying to live birth if we could conceive), our son was joined by a baby sister three years later. She kept us on our toes by launching my body into preterm contractions at 25 weeks (full term pregnancy is 40 weeks) and keeping me on bedrest, hospital visits and preterm labor medications over the next 13 weeks. After waiting and wanting so long, I was stunned to face 2 years of post-partum depression after her birth. We are still rebuilding the bonding we lost over that first two years of my emotional distancing.

After being advised not to pursue another pregnancy for medical safety, we were shocked to find ourselves expecting our second living son, born 2 days before his sister’s 3rd birthday. There were many emotions to process with this pregnancy: joy obviously, but also much fear, disbelief, even some anger. By the time of his birth we were beyond thrilled to welcome him into the family and praise God for His good gifts, but it was a surprisingly hard adjustment to have an unplanned pregnancy, especially after all the grief and heartache that had gone into trying so hard to grow our family through ten years of primary and secondary infertility! Contractions and bedrest started with him at only 19 weeks, but the severe asthma I experienced while carrying him actually proved to be to our advantage with my inhaler steroids frequently helping to slow contractions while also helping to mature his lungs for his month-early delivery.

And yes, parenthood has proven to be challenging. There are days when I cannot even care for myself, leaving me feeling helpless as the mother of 3, ages 8, 5 and 2! It is in these most challenging days where seeking joy and hope must become an active pursuit. I pray that my story can be a blessing and encouragement to others and that we can learn together to harvest hope from our heartaches. Please add your email address to my mailing list and leave comments to share your story with me too!

[UPDATE Feb. 2012  Last fall, Oct. 2011, I experienced multiple strokes with brain-stem involvement. I have vision loss, hearing loss, a partially paralized hand, and I cannot walk.]

Blogs for My Books:
Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss NavPress, 2005

Give a Thorn: Encouragement Amidst Chronic Pain and Illness, Through the Eyes of Paul (working title, book still in process)


Prof. Suzanne said...

Hi Jenni,

Just saw your blog link at HP. Thank you again for sharing your story here and for this blog.

I know I've read your story before, but this is the first time I recall seeing that you had HG. Did you with all the babe? Your battle with chronic illness is very common among the HG survivors I know. Likely about half of my HG friends have something going on like fibromyalgia, CFS, or something undiagnosed that I'm starting to think of as HG-syndrome (not a real name, of course) but my effort to legitimize what doctors are not diagnosing but what is being seen a lot in the forums and research at the HER Foundation.


Georgetta Nextdoor said...

Your story has already comforted many through your book and through Hannah's Prayer. This looks like a great way to continue spreading hope.

Kerry said...

Hi Jenni, Your blog is beautiful, including the title! Your warm, hopeful attitude in spite of all the adversity you have lived exudes through your writing.

I too have CFS. I became ill when my three children were babes, so I can relate to the unique challenges of living with serious chronic illness while raising a young family.

Your family sounds full of love Jenni. Your attitude has to be such a gift to your children.

Proverbs 27:19 said...

Hi! It's Larie again. I so appreciate you for sharing your story. I just began sharing my story about health this week on my blog and now I've found you! I'm not alone.

I so want to get to know you better and walk with you. I'll be sticking around to be further blessed by your hope!

Thank you so much!