Why Don't I Get A Baby?

I wrote a post for my stroke blog last night, What About Me?, concerning illness, physical healing, and miracles. I've thought a ton since then about how I want to expand on these principles specifically for my infertility audience. This post is intended to supplement that one, not to stand alone, so you will want to read that first. This is bonus content specifically concerning the topic of barrenness.

What About Me?

Perhaps I'm not the obvious choice to address this topic? I have THREE living children now! Shouldn't an "empty arms" post be authored by someone with empty arms?

I did spend a decade where you are, my friend. I write today both as hope that my story may encourage you to know that God does still work miracles and may yet have plans to bring you to the other side of barrenness, and to offer perspective on what those miracles may look like.

First, let me acknowledge what a treacherous, double-edged thing hope can be! I get it. Not allowing your heart to hope, is a self defense mechanism against being hurt. AGAIN! Being tender-hearted hurts when hopes are dashed time after time. Week after week. Month after month. Year after year. Decade after decade. Why set myself up to be shredded another time or ten? Once was brutal enough. We are talking thousands of fatal blows to the heart by now.

No. Thank. You!

Psalm 126 has been a theme passage in my life. (In fact, it is the key verse for my next book.) I can totally relate to weeping, planting in tears!

The part that intrigues me is the harvest of those tears, joy and singing. God doesn't say IF, but talks in absolutes.

So where does this leave me when there is no hope of a baby? I mean NO CHANCE. Like I've had a hysterectomy or my ovaries shut down at 24 and I'm 57 now - N.O. C.H.A.N.C.E. lady!

I could take the "easy" answers (that actually end up being true in many cases, but would likely offer you more discouragement than hope today), like reminding you that Sara (later Sarah, mother of Israel, wife of Abram/Abraham) was 90 years old when she conceived, long "dried up," outright laughed when her husband was told she would have a baby within the next year. Or Elizabeth (mother of John the Baptist) was also past expectation of motherhood when God allowed her to conceive. Or Mary, mother of Jesus, who got pregnant WHILE STILL A VIRGIN! Yeah, miracles really do happen, as I know with each and every one of my living children who each has their own amazing miracle story of why they should medically not exist, including the last who was God-sent three years after the latest I was to have had my hysterectomy!

The reason I won't default to those pat answers is because you would give me the same arguments I've given others countless times. All those miracle conceptions in the Bible were leading up to the one Child of Promise, our Lord and Savior, Jesus Christ. My Messiah has already come. I can't expect a miracle like that because He has already been born! I get that, and while miracle births still happen sometimes, why set my hopes on an obscure improbability???

I could tell you to "just adopt" (like it is that simple anyway?) and promise you that as long as you have a child to fill you arms, the ache in your heart will end. I'm sure my suggestion would be a totally new concept to you today, right? Because, dear infertile sister, you have NEVER considered, nor had adoption suggested to you, ever before, have you? (OK, sarcasm over now!) Adoption is WONDERFUL, and honestly should be prayerfully considered by anyone and everyone capable of parenting a child, fertile or not, but it is not the "cure" for infertility. Yes, it can transform a childless person into a parent, but adoption is a costly (emotionally, and often financially) process in and of itself and should not be entered into lightly or with the idea that it will put an end to infertility emotions. It might. For many it will bring much healing. Adoption is about both the child and the parent(s). It may or may not be the direction God leads you.

The same goes for foster-parenting, or step-parenting. God actually may have one of these avenues in your future. If He does, the rewards and comfort may be profound. The challenges and grief may also be beyond measure. I would encourage you neither to discount the possibilities, or to set your hopes too firmly on a plan God has not yet revealed. If that is the path He has for you, He will provide every resource you need to walk that path when He calls you to it.

What I would like to look at today is the idea that God's plans, while very possibly unfolding in the end to be one of those more common answers already mentioned, sometimes turn out very different, yet even more amazing, than anything we could ever dream up for ourselves.

Please consider two of my dear friends, beautiful women of God, to whom God answered "no" concerning children in the tradition sense, and yet their stories continue to wow me! Each story is different and yours might not be the same as these, but I wanted to share them just to remind you today that God's not done writing your story.

Joy DeKok. What an awesome example to me! Her Letter From My Heart To Women Like Me - Infertility HURTS, is powerful and profound. Some of my favorite lines read:

...We longed to fill our arms and home with red-headed and blond children. I had a secret dream of 13 children and at least as many animals. We’d live in a huge restored home, or barn, or a mill house. We’d need a big yard, an orchard, lots of bedrooms, a huge kitchen, and a big table with lots of chairs... 

Months became years. We begged God for babies, and He said no. His voice was quiet, firm, and love-filled. We had to trust Him because rebelling only made the pain worse.

Accepting His will for us meant facing the death of our dream.

As if that wasn’t enough, we endured cruel comments. These weren’t the ignorant kind spoken in an attempt to comfort us. They were mean and cut us deep. We didn’t know how to fight back and didn’t have the energy.

For years I carried those words on my heart as if they’d been branded there... 

... I did my best to remember every sin I could and re-confessed. All the way back to the day when I was four and sassed my dad. It was a really long prayer, over and over I begged Him to remove the guilt and shame from me. Even as I prayed I knew I was asking Him to forgive things He already had. But I had to be sure... 

...For reasons you and I cannot fathom this side of heaven, infertility is part of God’s plan for us. For many of you, He will say yes and children will be born from your bodies.  He will lead some of you to parent a child or children He birthed through another woman or other women. For a few of us, His will is clear: we’re to love the children in our lives already – nieces, nephews, and the kids of our friends. With God as your guide, you get to decide...  

...Still, you may be tired of baby showers, pregnancy/birth war stories, and although you love your friends dearly, their complaints about being moms scratch at your soul. And when they announce pregnancies, you’re happy for them, but their news stabs. Not because you’re jealous, you don’t want their babies – you want yours, and it’s not happening. You’re also exhausted when every month your hope is destroyed. And afraid of more disappointment when you pick your heart back up and in spite of the pain, you start hoping for next month. Your grief is deep and constant and most of the time solitary.

In all of these things and more. . .you are normal. And God understands... 

...Please don’t believe that I’m “over” my infertility. Nah. . .in fact, it’s the circumstance that keeps nagging at my soul even now. Because we were led by God to love the kids already in our lives, and those still to come, we are not parents and we are not grandparents. I celebrate each grand baby announcement, let it sting, and take more children born to others into my arms, and fall in love again. . .and again. . .and again.

Because that is part of His plan for me too. And He understands. And that is more than enough. If we let it be... 

In God Write the Best Love Stories, Holley Gerth Shares:

I watched as a single line spread across yet another pregnancy test. In that moment of silence and disappointment, that pink line felt more like a billboard with neon flashing lights declaring: “No! No! No!”

“No, you can’t be a mother.”

“No, your dreams can’t come true.”

“No, you don’t get to end this waiting game that is slowly shredding your heart.”

...As time went by, God began healing my heart and showing me that my idea of motherhood had been limited. He led me to Genesis where Eve is called “the mother of all living.”

I came to see all women are mothers because we all bring life to the world in some way.

After that realization, several different people prayed over me on different occasions and said God would bring life through my words. I began to get the picture: I was a word mama. I settled into birthing books and felt a new fullness deep within.

But one night... [Read How Our Daughter Adopted Us in Her 20s for the rest of this amazing story.]

Please come visit me on my new official author page on Facebook. I'm gearing up to publish my next book and would love your support at www.facebook.com/HarvestingHope/. Please help me show potential publishers I'm serious about this book writing thing. They need to see numbers of likes well into the thousands while I'm only in the low hundreds, so far.

Check out my book Hannah's Hope: Seeking God's Heart In The Midst of Infertility, Miscarriage, & Adoption Loss on Amazon for more support.

Also, please visit my review of the eTeacherBiblical Hebrew course I'm taking this year and enter the give away for a free class for yourself. Entries are low so your chances of winning are great, but you can't win if you don't enter!

15 years

15 years ago we woke up to a ringing phone and images of 1 1/2 twins towers, the half billowing smoke but not yet fallen. Through the morning my long-awaited toddler played as I sobbed and watched a second tower hit, panicked people jump from windows high, then the towers fall. As the day unfolded, I relayed news of two additional plane crashes to my husband at work. For three solid days I cried and seriously wrestled with God over the issue of should we continue to bring more lives into this broken world or not.

We learned my husband's aunt was initially scheduled to have been on one of those planes and got bumped. Being on the west coast of the country, we were slightly insulated from the trauma in the sense that not every single person here knew someone who died that day, but the tragedy was massive enough that everyone here had at least one loved one they worried over until safety was confirmed. There was still enough communal loss that the churches were packed for week and flags flew abundantly and high. Rick's grandma, who lived next to the airport, lived under eerily quite sky for days.

Since that day, life has carried on. That baby is about to get his driver's licence. We have been blessed with two more living miracles here on earth. My husband has changed jobs twice. We have changed houses. We just celebrated that aunt's 70th birthday and she and her husband had another very near-miss going through the airport in Turkey just before the recent bombing there. (My husband and son were in the same airport two years prior!)

I've published my first book. My father-in-law has battled cancer epically. My mother has given us a sound hospital scare. I've survived a traitoris immune system that tried to abandon me a decade ago. I've survived a chiropractic accident leading to six strokes. A year ago today I had massive abdominal surgery for feminine pain and a renegade appendix.

The joys and griefs have been great. Today, I simply pause to remember. To lay the details of our lives before the Lord. To thank and rejoice for the blessings. To acknowledge the losses. To pray.

Saake Summer 2016

I haven't abandoned this blog. Life has just kept happening!

Let me hit the highlights.

In September, 2015, I had my second hysterectomy (finished up everything left behind seven years before, cleaned out new endometriosis growth, took my appendix). Is it ever wonderful to be rid of all that pain. I was so bloated and miserable!

Swollen much? My pre-surgery tummy!

The same month I made a decision, after 3 prior less determined attempts, that I was going to cut all wheat from my diet. (I'm happy to report that I'm still what-free, now migraine-free, down 20 stubborn pounds from my post-op appointment weight (when swelling was already greatly diminished!), and generally feeling much healthier.)

Earlier this spring, 2016.

This year, our 10-year-old earned best behavior in his entire class (measured in "Falcon Feathers" collected throughout the year). The school took him and a few other class winners to a day of mini-golf. Today is his very last day of 4th grade already! He will have a week with grandparents, a vacation Bible school (VBS) week, and a week away at church camp this summer. I'm excited to have several weeks to spend with him myself before school starts again in early August.

Our 13-year old won a generous cash prize (enough to pay her tuition to a special math and science camp she wanted to attend in July) by taking first place locally, then second at state, in an essay contest on patriotism and freedom. The week before math camp, she will be taking a trip (her first time ever to fly as an airplane passenger, though she has been in the co-pilot seat, typically in control of the flight stick, of private planes since she was 8-years-old) to Oshkosh, Wisconsin to attend airplane camp! She won that trip due to a second winning easy through her flying club. She plans to have enough flight hours to earn her pilot's license next year when she is old enough to qualify. She finishes up her year of free voice lessons (from the talent show she won last year) this month and is already begging to take up horseback riding, as she finally got her first taste of the sport this past weekend. She plans to dissect a frog, a fish, several other small animals, and teach her little brother to dissect a worm, over her summer break. She will also spend a week helping direct crafts in my mom's church's VBS.

Our 16-year-old just finished his Junior year of high school. He is spending nearly 9 week living 5 hours from home, interning at Stanford University in a medical office. He left Tuesday morning. We hope to take a weekend trip over to visit him over the summer. He is going to be so changed, so grown up, after a summer of full-time working, research, and managing his own laundry, budget and meals! He may take a evening college course or two as well, while he is over there. For several months we were thinking he might skip Senior year and start college this fall, so I'm thrilled to know he will be moving back home for another high school year at the end of July! When he gets back to Reno, we should finally have time in his week home before the start of the new school year, to get him to DMV to get his driver's license!

Rick started a new job with Nobel Studios in February. He also serves as family logistics implementation and taxi driver! If anyone deserves to earn a trip (or a  new car, or lawn service for the year, or a personal chef who actually knows how to cook...), it is this amazing, dedicated guy! Satan wanted to destroy our marriage through my strokes. I'm so thankful God won!!! I am blessed beyond words to be married to this man.

I am still doing water therapy at least twice a week (sometimes 3 times) and riding an exercise bike, gifted to me by a couple at Sunday School, several non-pool days. I've made myself very sore with a couple of 11 or 17-mile mornings, but I typically average 7-9 miles, 2-4 times per week. Tuesdays are my dedicated writing days. Thursdays have been Bible study mornings, then lunch with the girls, so I get home about the time my kids get off school. (I'm taking the summer off to be home with my kids another day per week, though.) So each week has just one week day for fitting in doctors and dentists and errands and chores. It is a full and busy rhythm, but I am so thankful to be at the stage of stroke recovery where I no longer juggle a dozen or more medical appointments each week! Considering that I "should" be dead or lying in a nursing home, that I get to lead this life is beyond amazing!

My rose garden this morning.

The past couple of weeks I haven't been riding my bike much at all, managing only 3-5 miles when I do. I've missed some water therapy too. In fact, I'm not really even managing to keep up with laundry and dishes and writing and meals well, as my stroke nerve pain as well as Chronic Fatigue Syndrome (CFS) seems to be in a bit of a flair. For example, I took an amazing week-long trip to the Mount Hermon Christian Writer's Conference in March (total God provision, read about it here) and did amazingly well physically, both there and upon return, but the weekend trip I just took for Memorial Day is hitting me harder than that whole week! My doctor is assisting me in the last 20-30 pounds I need to loose to get back to my pre-stroke range and I really don't think this medication plays nicely with CFS, but I'm willing to pay the price as I know my weight-loss treatment is short term.

From our Memorial Day weekend. 37 of us gathered at Lake Tahoe to celebrate Rick's aunt and her best friend, for their 70th birthdays!

Other recent exciting happenings around here are that our van decided to commit suicide (throw a piston rod, and we had already decided at last major repair it wouldn't be cost effective to repair another catastrophic issue in that 18-year-old vehicle) on our way home from our Tahoe weekend. Thankfully, when we lost power to both both steering then breaks, Rick was behind the wheel (and handled the emergency SO WELL, I must add!), not our student driver! Thankfully we were already off the freeway and close to home, so Rick managed to limp the poor thing into our cul-de-sac, smoke billowing (too bad it didn't catch fire and take car of disposing itself!) and fluids hemorrhaging, where it died, never to start again. Always wanting to be a mom of many kids, a minivan was always my "dream car." I guess that life chapter is now over. We are now car (or small SUV, something that easily accommodates my walker or wheelchair, along with 3 kids) shopping.

And last, but not least, I wanted to share that as excited as our daughter was to learn to ride horses, I confirmed a new passion this weekend as well. I have wanted to take paining lessons since before I had kids. Water color, I thought. On Sunday I had a chance to try acrylic paining on canvas (one of those sip and paint party places). I felt like a whole new world opened up to me, a brand new area of my heart came alive! To say I loved the experience would be an understatement. I'm not skilled, but the feeling of swiping vivid color across clean, white canvas, just wow! Took me by surprise in the intensity of emotion!!! I'm officially hooked. When and where can I sign up for lessons?

Our daughter's dedication to me on the back of her own painting. :)

The Tummy

I faced "female problems" from my early teen years. Thirty years later, this picture was taken last week, a few days before my final hysterectomy, which will hopefully lay the consequences of a diseased reproductive system to rest once and for all!

You see, this was actually my second hysterectomy, going back to take my cervix, remaining ovary, and once again (as has been surgically required so many times over the past 20 years) clean out the mess and pain created by Endometriosis. I am 43 years old and dramatically entered menopause in full force last week.

There had been absolutely NO CHANCE of that belly hosting the life of a baby for nearly seven years since I had surgically said farewell to the body of my uterus and first ovary, yet to look at me, all bloated and inflamed, it would have been a common presumption to think I was well-along into pregnancy!

This got me thinking and reflection on our decade of active infertility. My tummy HAS looked like this before, sometimes, at least six in fact, from the hard-fought blessing of carrying a child within! For all those stretch marks, I am rewarded far beyond anything I had ever dared hope during our infertility years, with three living children in my home today, ages 15, 12 and 9. I do not take them for granted. I so wish I could have worn a t-shirt (or neon sign on my forehead) that read something like, "Don't hate me infertile friend. This baby has been 7 years in the making!" Just because I was finally pregnant, the feelings of infertility were not magically erased! I readily still related much more with the infertile word than the fertile one!

Our living miracles' known siblings who never got to come home would be 20, a likely twin of the 15-year-old, 14, and 13. I am ever so blessed that my womb was their entire earthly home, yet they are still missed! Pregnant tummy mis-speaking about the state of my fertility once again, in each of their cases.

More strangely, my tummy has looked like this before because of the very reality of not being able to conceive! Illness and swelling such as I just pictured , from Endometriosis or other reproductive illness, but also sometimes from PCOS (polycystic ovarian syndrome), in response to fertility drugs, fibroid tumors, and/or due ovarian hyper-stimulation! What insult, added to injury, to "look pregnant" simply because of whatever condition(s) is causing sub fertility in the first place!

So next time you see a "pregnant" woman, don't presume! Maybe she is. Maybe she isn't. Either way, there may be much more to her story than meets the eye. And to the lady I naively asked how far along you were, 20-some years ago, before I knew better, I'm still so very sorry for the tears I brought to your eyes that day. Please forgive me!

Communities and Comments

Today's #NHBPM prompt asks me to share advice for dealing with negative feedback in my community.

 

I've been blessed by surprisingly little negative feedback over the years, so I don't know that I have much advice to offer. The one gem I can pass on, isn't even original with me. It is basically, "This is my blog, so if you don't have anything nice to say and we can't resolve legitimate concerns, I still have the power of veto here if you choose just be be ugly or unreasonable in comments." This one piece of advice has been very freeing for me, to realize that freedom of speech does not prevent me from freedom of moderation over my own comments. Censorship is still not something I take lightly or use with abandon, but if a public confrontation cannot be resolved, I'm not tied to continuing to publicly leave derogatory, attacking, or offensive replies live on my own website.

Since I don't have much else useful to offer on the topic, I thought I would take this opportunity to introduce you to some healing communities, both "mine" and others.

For infertility and loss at any time from conception through early infancy, there is a message board forum I helped launch years ago. Hannah's Prayer has far outgrown me and I can claim little ownership or input any more, but it will always hold a very special place in my heart. It is so much more than a "fertility forum" and really is the first resource I turn to for parenting after infertility resources, or just about any information in life, and really is my first source of breaking world news, shared from an international perspective. This world-wide community of Christian sisterhood is amazing and usually new posts have replies within minutes, day or night. It is well-worth you time investment of a few hours or days to get your (simple) registration approved to gain access! I feel like I need a t-shirt that reads, "Everything I've learned in life I've learned from my HP sisters."

I know it isn't exclusively infertility related ,and I haven't used the resource nearly as much as I could, but I feel I should give an "honorable mention" shout out to HysterSisters here, for women contemplating or undergoing hysterectomy. Another honorable mention is SoulCysters for women with Polycystic Ovarian Syndrome (PCO). Endometriosis Support should receive a shout out too. Be Not Afraid is the first place I direct parents when they face the negative prenatal diagnosis of a child. And if someone is threatening to miscarry or unsure about medical prognosis in early pregnancy, I direct them to Misdiagnosed Miscarriage for equal doses of hope and medical realism. My own book on infertility also has a blog at Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss.

For chronic pain or illness (I have yet to find a great resource specific to ME/CFS. Anyone know of one?) my go to resource is Rest Ministries. I had no hand in the formation of this organization, but see founder, Lisa Copen, as a dear friend as we have been through the growing pains of starting young internet ministries together. The primary difference is that Lisa has maintained nearly sole leadership and day-to-day management of RM, while I have been blessed to pass daily operations of HP off to a fantastic Board of Directors. I honestly don't know how Lisa does what she does, all the while battling her own physical challenges as well as family management and creating amazing ministry resources, from blog posts, to videos, to forums, to social media participation. My own offerings to this community are two manuscripts in progress, Harvesting Hope from Heartache and Given Me a Thorn.


A stroke community I have recently found to be helpful is StrokeNet. I have only been attending there a couple of weeks, so far, so I can't tell you much about history or background yet, but so far I have really appreciated the stories and understanding found there. I am also sharing my unfolding stroke journey (and hope to eventually also write a book under the same title) at Stroke of Grace.


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Today I am thankful for the internet and the ability to connect with thousands of folks facing similar struggles, people I would never meet off line! Does anyone have a copy of the poem about "my best friends live in my computer"? I would like to post that here!

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First Published Book: Hannah's Hope : Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss

Book-in-progress on drawing on the fruit of the Spirit in times of trial: Harvesting Hope from Heartache

Next book-in-progress: 6 strokes at age 39, Stroke of Grace

Future manuscript in the plans: Given Me a Thorn, the apostle Paul's story as applicable to living with chronic illness

Body Three, Spirit Two

Today #NHBPM prompt is, "Write a letter to your health."

Dear Body, 

I know you are only a shell for the real me. Overall, I am trying to keep this in perspective. God gave you to me for service and I want to get to Heave having used you up to the best of my ability.

I know you are just a tool and I'm, overall, OK with that. The things you do to complicate my days on earth aren't fun, but I know are only temporary.

But there are days when I am overwhelmed by the reality that the cracking of a shell simply hurts. Emotionally, mentally, and spiritually, and physically, it is crushing some days! There are times when I want to just say, "I'm done."

I'm only 40, yet I've already lived through three more major health issues than many people endure in a whole lifetime. It gets old sometimes. Even if only temporary, the trials feel so long and daunting, sometimes! If I've already managed so many big things in such a relatively short time, I don't even want to consider what might yet be coming!

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. - Matthew 6:34

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. - 2 Corinthians 4:16-18


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Today I am thankful for my amazing husband, who has been though so much the past several years, yet continues to choose me. Happy birthday!

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First Published Book: Hannah's Hope : Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss

Book-in-progress on drawing on the fruit of the Spirit in times of trial: Harvesting Hope from Heartache

Next book-in-progress: 6 strokes at age 39, Stroke of Grace

Future manuscript in the plans: Given Me a Thorn, the apostle Paul's story as applicable to living with chronic illness  
 

12 Steps

Rick says there were several times my therapist let go for several steps today. I still walked like a drunk, but surprisingly better than last week. Rick took one video where my therapist let go of my belt for about a dozen steps! We hope to post to the video to Facebook (see previous post for links) later this week.

I'm still wearing 3-pound weights on both legs when I walk to help my brain understand my body's place in space. I am finally strong enough to wear 1 1/2-pound weights on my arms, on and off, here at home, for the same reason. My left hand continues to be rather non-functional

My left shoulder has acted up all week, so today in therapy, we skipped any machines or exercises that could irritate it or cause further inflammation and pain. I've had it explained to me that the shoulder isn't fully dislocating, but because of the muscle weakness, it does repeatedly slip partially out of its socket, thus causing pain to an otherwise mostly numb area of my body. It "popps" back into socket several times per day and that's painful when it happens, but ultimately brings some relief.

The only way to strengthen the shoulder is through specific exercises that I have to do several times per day, but most exercise aggravates and inflames the joint, bringing more pain and loss of mobility. It had calmed down for the few weeks I was out of therapy (between home health discharge and my first outpatient appointment), even though I was continuing with an exercise regiment here at home, but now that I'm doing home exercises on top of regular therapy, my shoulder is giving me plenty of trouble again.

If you are looking for a specific prayer focuses, we would appreciate real prayer for our marriage. We hope to celebrate 20 years of marriage this August, and though we've been through a lot of painful things (business loss, unemployment, infertility, recurrent miscarriages, several adoption losses, chronic illness, etc.) this outranks any experience we have yet faced. This has already been a long and painful trial and we know we have many more months or years of adjustments ahead of us before we can begin to find a "new normal."

Even if I do regain physical functions through God's re-wiring of my brain, there are six areas of my brain that are (barring God's miraculous invention) dead and cannot be recovered, so my cognitive process have been forever changed. That's hard for both of us to cope with. Although, Rick married me "for better or worse, in sickness and in health," this is a trial neither of us remotely imagined facing! God's power is our only hope or strength!

We would also appreciate your prayer for wisdom and unity in parenting. While we still haven't moved the kids back home full-time, this has been a painful growing season for every member of the family. We are finding parenthood to be more challenging than ever and know we desperately need God's guidance. Our kids are finding life to be full of surprising adjustments and challenges. This is one season where I'm especially thankful that Noel, Joel and Hannah never had to face any of the challenges of this broken world! Please keep J. (boy, age 12), R. (girl, age 9) and especially J-Bear (boy, age 6) in your ongoing prayers! I know God's purpose in this must include their lives in His holy plan, so I am learning to yield them in a way I never have before, but it is heartbreaking to watch them go through such deep struggles and be fully unable to fix anything or make the situation any easier.

Physically, besides longing for walking and seeing better (my new glasses will have to be exchanged, as they create a "blind spot" in my good eye), my TMJ remains my most ongoing and painful "thorn." My therapist works on my jaw about an hour per week and it the process is so painful I fear I will throw up on him (something my sweet husband has already endured) one of these days, from the intensity of the pain (and this said by a woman who has survived endometriosis and three unmediated labors). He says my jaw dislocation is very deep and we can't even begin to address the slipped disk in the jaw until he has re-adjusted me enough that the muscles relax enough to begin trying to move the disk back into place in the jaw joint. It is very strange to experience a numb left half of my mouth and feel such deep and profound pain in the left side of my face, my jaw joint, my lower jaw and my teeth!

Another couple thing that have really "gotten" to me this week are the finality of our sterility and my self-image. Before my strokes I had been praying about adopting another child. Even though it's been 3 1/2 years since my (medically necessary) hysterectomy, and though we've been abundantly blessed with living children, I still held out hope that "someday" (sooner rather than later) we would continue building our family through adoption. God had other plans. Instead of caring for a baby, I'm dependent on others to do my laundry, cook my meals and clean my house. The door feels firmly locked and bolted closed now. For the first time in a long time, seeing a sweet baby made me cry on Sunday and that familiar old ache was back in my heart. We've had three turns I thought we would never have, two after I had been told to expect a hysterectomy - I am so blessed! But it will never be again, and that finality is hard.

I keep another blog called Inner Beauty Girlz but I guess my message, that outer beauty is fleeting and that true beauty comes from Christ on the inside, is one I still need to learn! I started sobbing in church Sunday while everyone else sang, "You make everything glorious, and You made me!" I could only think of my brokenness, my chopped hair, my crazy eyes, my weight gain and my losses and inabilities. At that moment I could not think of Christ or who I am in Him, but only of my ugliness. I have voiced to several people that if only I were a baby or even a toddler I would be "cute" in my re-learning how to walk and move my body, but so far no one seems to really understand my self-loathing. Obviously, I am still really struggling with this.

My book on the fruit of the Spirit, is also coming along, like my physical healing, very slowly, but it is continuing to move forward. I'm asking the Holy Spirit to give me wisdom about what He would have me say about Himself and His work in our lives. Please join me in praying about this.

That's all I can think of to update for now, but it gives you a picture of where I'm at both emotionally and physically. Thank you, again, for your faithfulness in ongoing prayers! God is faithful and gracious and so good!!!

Held

I'm very blessed to be part of a new project, a blogging community just for Christian women facing infertility or loss, along with those who love us. If you are journeying through emotional pain surrounding the growth of your family, or if you love someone who is, please come join us at Held, the brand new blogging arm of Hannah's Prayer Ministries.

Tipping the Scales

I was one of those teens who struggled to MAINTAIN over the 100 pound mark. I could eat anything and everything I wanted. When I got sick with CFS (we now know to actually be the retrovirus XMRV) at age 18, I basically stopped eating. Bacon bits, cottage cheese and tomatoes were the only things I could choke down for months. Then I discovered an equation I called, "food equals energy" and relied on high calorie snacks to give me momentary blood sugar boosts just to get through the next task in survival mode.

I gained 40 pounds in less than 2 years, only to discover a month before my wedding that there was no possible way I could fit in my wedding dress! :yikes: We bought a new dress, got married, my weight settled in around 143 and within six months we jumped onto the roller coaster of infertility charting and then Clomid. I managed to stay just under 150 (having gained nearly half of my prior body weight!) over the next six years but it was a hard struggle. Finally, I got on Metfomin to address insulin resistance (IR) that went hand in hand with polycystic ovarian syndrome (PCOS) and was thrilled to watch 20 pounds melt off over the next three months!!!

I was and even more thrilled to learn we were pregnant as a result of IUI and injectables that third cycle! The thinking at that time (nearly 12 years ago) was that Metformin should be stopped when pregnancy was confirmed, so I stopped it the day I got my positive result. I was VERY sick (throwing up 20-30 times per day from week 7 on through most of the pregnancy) and lost 12 pounds before I could start gaining anything, weighing just 6 pounds over my starting pregnancy weight the day I went into labor. Our son nursed for 19 months and I continually gained weight that entire postpartum time.

I think I ended up right back at the 143-145 mark by that point. I don't know why I didn't get started on Metformin again at that point, but I didn't. We went on to have two more miscarriages. Eventually I did get back on Metformin and this time dropped over 30 pound in 10 months and started ovulating consistently without other fertility meds!

I had another laparoscopy, lasting nearly 4 hours when the doctor had only anticipated 45 minutes, and was told I would need to come back for another surgery in 3-6 months to remove at least one tube and ovary. I was told there was less than 5% chance of ever conceiving again even with the help of medical aid and that if by some miracle I could possibly conceive, I would never carry another baby to full term due to multiple uterine issues.

My first ovulatory cycle after surgery, God proved the doctors wrong! And though the pregnancy was scary (preterm contractions started at 25 weeks) God brought our daughter to healthy, full-term birth 8 years ago last week. I gained 18 pounds with this pregnancy and kept right on gaining through 2 years of breastfeeding and postpartum depression.

I'm thinking I was around the 150 mark by the time all was said and done this time. I did get back on Metformin but for the first time my weight didn't budge. :( It didn't go down, but I tried to console myself with the fact that at least it didn't go up any further either.

After 13 years, 3 miscarriage, 7 adoption losses, 2 living miracles, multiple surgeries, meds, and so much more, God totally surprised us with yet another son, born the week of our daughter's 3rd birthday! Preterm contractions started at 19 weeks this time (by God's grace he was only born a month early) and while I wasn't nearly as sick as I had been with our first, I again dropped several pounds before I could start gaining and was just 6 pounds over starting pregnancy weight on the morning of his birth. The same pattern of ongoing weight gain happened over the next year and a half of breastfeeding.

Again I found myself parked right around 143-145 pounds, as seemed to be my body's natural landing spot whenever PCO and IR went unaddressed medically, and now sometime tipping up to around 150. I did get back on Metfomin again briefly, but by now my body was totally burned out. The hysterectomy I had been told to expect before my 30th birthday could be held off no longer and 2 1/2 years ago, at age 36, 10 weeks worth of heavy bleeding that would not respond to medical intervention led to knowing it was time to write the final chapter of our infertility story.

Though I kept one ovary, my broken uterus had to go. It was especially hard as my trusted ob/gyn moved out of state a week before all the bleeding started and I had to go through these decisions and surgery with a doctor who I had only just met. He immediately took me back off Metformin saying that since I was no longer rying to conceive, there was no reason for me to stay on Metformin. I argued that as long as I still had an ovary, I still have PCOS (and really, even if the ovary were gone, PCOS's long-term impact should still be addressed) but he wasn't in agreement. As a result I began packing on weight like never before. The girl who struggled to maintain 100 pounds was now to 160 by last Christmas (2009) and a pound shy of breaking the 170 mark this Christmas!

Due XMRV my physical ability to exercise is almost non-existent. I use a wheel chair most times I leave the house because of my inability even to stand for any length of time. I cannot walk to my own mail box at the end of our street. I eat lots of fruits, veggies, lean meat, but I do crave sugar and carbs and while I'm typically fairly careful here, once I get started on sweets, I tend to binge. I try to make good food choices overall, but the weight kept piling on anyway. You may remember my post about Seeking Contentment with Great Gain gain from last July. To me Metformin was the only answer but none of my doctors would budge.

Finally, this past October, I started some new medications for the CFS (after trying IVs and all kinds of other things these past couple of year) and that actually seems to be helping. The meds even list weight GAIN as a common side effect, but I believe my body was fighting so hard just against illness that it couldn't let go of weight. Now that I have some help for my battered immune system, I'm dropping about 4 pounds per month (down a total of 15 pounds since October).

Now that I have some momentum, I'm wanting to make even better food choices. On my doctors orders, and by God's strength alone (sure not in my power!), I now in my 12th day off of processed sugars!!! My doctor told me in no uncertain terms a couple of weeks ago that "cutting back" on sugar isn't OK, that I need to cut it OUT all together. This has been a hard battle as sugar has remained my security blanket through all the ups and downs with weight and health crisis in general. I read this week that sugar is as addictive as cocaine! But God's giving me victories every day, like being able to joyfully say, "No thank you" when offered birthday cake for both of our youngest living miracles this past week. It's an exciting process even if it is a moment-by-moment battle.

Thanks to the kindness of my sweet friend Veronica, I just started reading Made to Crave: Satisfying Your Deepest Desire with God, Not Food by Lysa Terkeurst. (I don't know how long the offer will last, but a 21-day companion devotional called Craving God is FREE as an Amazon Kindle download today! If you don't have a Kindle, you can download a free ebook reader from Amazon as well.) I know Made to Crave is the right book God sent me at the right time. It's not a diet program, it's a Bible study on heart issues and replacing food cravings with a deeper relationship with the Lord.

How lovely is your dwelling place, O LORD Almighty! My soul yearns, even faints, for the courts of the LORD; my heart and my flesh cry out for the living God. - Psalm 84:1-2

I'm at 154 pounds right now. My goal weight for my height and bone build is 125ish, so 15 down and about 30 pounds left to shed to be at a more healthy weight. I've been as low as 113 (nearly 9 years ago, just before conceiving our daughter) and I know that was TOO thin, but I know myself well enough to know I could be tempted to try to get even below that 125 mark. Being hopefully optimistic that I can continue loosing weight this time simply by addressing significant health issues and continuing to make wiser health choices, I want to be accountable that I don't let myself drop that low again either. Thanks for walking with me through this journey. I'm praying that God will help me stop this yo-yo once and for all!

30+ years

I posted last month about my 20-year landmark with ME/CFS. I started that story talking about "waking up feeling great" and then getting so sick. Because of this dramatic "overnight" decline in my health, I would typically be classified as having had a "sudden onset" case of CFS. To me it's not quite so clear-cut.

For as long as I can remember I've gotten sick frequently. Whenever I've been sick I've gotten thing harder and longer than anyone around me, but in between illnesses, was a regular little "Energizer Bunny" before that hard ME/CFS crash 20 years ago. Going back to first grade, age 6, I can remember challenges with energy and blood sugar, unable to make it from a hearty breakfast to lunch with only one snack, ending up in the nurses office on a regular basis because I was just to hungry and shaky to make it through the morning without getting sick. Through high school I carried mini snickers bars in my purse to off-set sudden blood sugar drops. My blood sugar levels have been checked over and over and over through the years and always come back within "normal" parameters, though I am "insulin resistant" as tied to PCO (polycystic ovarian syndrome,) and have often exhibited signs of either hypoglycemia or diabetes at various time, but blood work never supports the symptoms.

When I was 8 (30 years ago) I had mono immediately followed (within 3 weeks or so) by chicken pox. My chicken pox were of such severity that, had we been in the U.S. (we were in Japan at the time), I likely would have been hospitalized. My body has never been totally "normal" since that time. I started having frequent, unexplained abdominal pains that same year, too young to puberty, but the only explanation we were ever given was years later when I was diagnosed with Endometriosis. I also had severe leg aches all through my growing-up years but doctor after doctor wrote them off as "growing pains" and my mom was left without answers.

In addition to Endometriosis (finally diagnosed at 16, but a problem from the very onset of puberty), I also started having symptoms of Fibromyalgia in my mid-to-late teens. The Fibro wasn't officially diagnosed until I was 24, but can be traced back to a specific time, I think around my junior year of high school, when my mom and several friends and I all had some strange pains and vague sense of un-wellness that lingered for months. We jokingly deemed it the "wrist flu" because it was most pronounced as pain in the wrists. For most of my friends it stuck around a few months then resolved. For me it never really went away, but slowly added "trigger points" in my neck, shoulders, arms, hips, knees and so forth.

The summer between my junior and senior years of high school was especially stressful. I was waking up at 5am, working 8-10 hour days, then coming home to care for my family, cooking, cleaning and helping run an in-home hospitality ministry, trying to fill my mom's shoes as she recovered from surgery for a severely broken and displaced ankle joint. Having always needed much sleep, I wasn't falling into bed until 10 or 11 each night, only to be up by 5 again the next morning. I remember feeling so utterly exhausted that summer that I decided this must be the definition of "bone tired" for my very bones seemed to scream with exhaustion. The difference between that fatigue and what I face now is that then I was able to keep "pushing through" whereas the CFS fatigue is one that can't be "pushed". When I'm "done" now, no amount of will power is enough to push past the wall and keep fighting. Any attempts to do so will just land me more firmly in bed.

My senior year of high school, age 17, was delightful. My mom was getting back on her feet, my class load was light and almost entirely fun electives as I had nearly completed all of my high school requirements by the end of my junior years. I was enjoying more adult freedoms having earned my driver's license that previous summer. After a highly stressful season, my schedule was easy and my heart was light. Strangely I started experiencing mini "episodes" many weekends and found myself frequently feeling run-down and running low grade fevers by Sunday afternoons. Typically I would crawl in bed and sleep for a couple hours then feel fine again. The thing that seemed particularly unusual about this scenario was the frequency and consistency (almost always hitting just after church on Sunday afternoon, typically 2-3 times a month) it was happening during my senior year. As I recall, these weekend "spells" had primarily stopped before high school graduation. Beyond the Endometriosis and (as-yet-undiagnosed) Fibromyalgia symptoms, I had no other indication that anything was really "wrong" at the time I left for college.

It is my personal speculation that I have carried XMRV for at least 30 years, possibly longer. One reason the mono/chicken pox when I was 8 seems like a reasonable marker to have been infected at least since then, is that my CFS onset 20 years ago came with another mono exposure. I've had 6 more cases of chicken pox (I should certainly be lifetime immune after the severity I had them as a child) since my CFS onset 20 year ago, but never a case of shingles, so it seems my body doesn't know how to develop full immunity to chicken pox. I believe the XMRV / MLVs / HMRV / HGRV (or whatever name they are finally going to settle on calling it!) retro-viral family had been quietly biding it's time in my body, flaring up just enough to cause some underlying issues throughout my childhood, but primarily staying silent until it was triggered into full blown activation, expressing itself as ME/CFS.

How did I become infected in the first place? What triggered the full blow CFS onset? Those are the million-dollar questions!

Genetics may play at least a part. I can look back as far as even my great-grandfather and his chronic migraines and skeletal frame, unable to maintain weight, and down on through other family members and see some potential for family history of auto-immune/ neuro-immune/ possible retro-viral illness tendencies. My mom's "wrist flu" never went away either, leaving behind the aftermath of Fibromyalgia including pain and trigger points and some fatigue for her, but not on the same level as my CFS fatigue. Did she "get" Fibromyalgia at the same time I did in high school, or were we both already carry a retrovirus that possibly I inherited from her at birth? (We do not yet know if she is positive for XMRV.)

Or maybe, knowing XMRV can survive in respiratory secretions, I was exposed to it on the playground at the same time I was first exposed to mono/chicken pox? I don't see evidence for any retrovirus being "easily" contagious, meaning it doesn't seem dangerous to simply be in the same room with someone with an active XMRV infection, but I wouldn't be surprised if this retroviral family of is more easily transmitted than the retroviruses we have always known to require sexual or blood exposure.

Kids aren't often too careful about hygiene, so maybe I shared food or drink with a friend. Or, gross as it sounds, maybe someone with an active infection sneezed, grabbed a ball while the virus was still fresh and "wet" on his/her hands, then bounced it to me and I rubbed my eyes right after catching that slimy ball? Of course these are only personal speculations as I've tried to piece together my point of contraction, but the abdominal pain I've felt since age 8 hasn't resolved even with a hysterectomy and is such a "classic" CFS symptom that it seems nearly unfathomable that I haven't been infected at least since childhood.

Another factor that I must address is vaccinations. Having lived overseas (the Philippines and three parts of Japan, along with a 10-day trip to Korea) for most of my childhood, I had a ton of vaccinations, not only the standard childhood kind but also all those needed for international travel. After nearly every inoculation I have had poor reactions, never life-threatening, but often making me very ill with fevers and misery. (As a side note, I also "teethed" hard with fevers and pain and feeling poorly, not only in infancy, but every time I got new molars all through my teens.) They say you don't "get the flu" from a flu shot, but what I experience from an allergy shot, a flu shot or any kind of vaccine is typically at least as bad as any flu.

I know many doctors won't agree with me on this, but I don't think vaccines are all they are cracked up to be, especially for someone who is already living with an underlying immune system dysfunction. (I know several moms who themselves have CFS, and their kids developed autism after vaccinations - interestingly enough, these kids and their moms are gradually testing positive for XMRV as well! Here is one example, though I can think of three right off the top of my head and know several others in more extended circles.) I was re-vaccinated for measles within the last month before leaving to college, then had my mono exposure that knocked me off my feet just a month after getting there. There has been speculation from the very beginning, even from my original doctors, that my reaction to that measles vaccination was very likely a contributing factor to the breaking down of my immune system, with the stress of college lifestyle and the second exposure to mono being the final "straw that broke the camel's back" and sent me into a spiral of T-cell dysfunction.

So many questions. So few definitive answers at this point. I definitely carry a nasty retrovirus that leaves little room for doubt that it is behind many health struggles I've carried since childhood. But when classifying me as a "CFS" case, am I "sudden" or "gradual" onset? It depends on how you look at it!

Great Gain

I've gained weight the past year and a half. A lot of weight.  I was asked three times last week if I was pregnant because I'm carrying most of that weight right out front in my belly.  I had a hysterectomy, then did IVIG and there is no doubt that my hormones are way out of balance. I weight more than 50 pounds more today than I did when I was pregnant with our daughter eight years ago. About 40 of those pounds have been packed on the past 20 months.

I am frustrated. I don't like my body. I don't like getting dressed. I dislike getting undressed even more.  I have stacks of clothes I can't get into, some now 3 or 4 sizes too small, that I've been stashing away for when I can get the pound off.

Today I'm choosing a new attitude. Yes, I would still like to shed some weight, for health, for self-esteem, for so many reasons. But the fact is, this is my body right now. The same Holy Spirit lives inside this broken temple who lived here when I was at my healthiest, most fit, most attractive days. I can make choices that will keep this body as well-conditioned as I am able, but honestly some of this is simply beyond my control.

So today I went through all my clothes, those horded away for someday and those still hanging in my closet, many ill-fitting even though I try to still squeeze into them.  To my delight I found a few things I honestly didn't think would fit that still work nicely. :)  I kept about 5 things that are very near to fitting, just a tiny snug right now, because if I can loose a few pounds and under-grow what I have, I still have a tiny cushion of options before I hit yard sales and consignment stores for smaller sizes.

I sorted and organized all the rest and can walk into my closet and know that absolutely anything I pull off the hanger will fit on this body and I won't have to fight through five or six outfit changes (and accompanying tears and words of self-loathing) just to get dressed in the morning.  And as a bonus, I now get to bless some friends with an abundance of clothing that can be enjoyed again, no longer a source of frustration to their owner.

But godliness with contentment is great gain.

-  1 Timothy 6:6


Father, please grant me contentment in my "great gain" that I can have a heart to fully embrace the body you have given me and glorify you with it, just as I am.

What is CFS?

May 12th is Florence Nightingale's Birthday, a day that has been claimed by Chronic Fatigue Syndrome (CFS) patients (along with Fibromyalgia and others) to increase awareness for this disorder. I had wanted to write an informative blog post, but honestly I just don't have the energy right now. So instead I'll clip and paste some information I posted to Facebook this morning, along with the answers I've replied to the questions people have asked me since that post.






Before taking on CFS, I wanted to flag a post I just made on my book blog, pointing you to some beautiful give-aways for moms of HeavenBorn (miscarried, stillborn, infant death, etc.) children. Most entry deadlines expire today or tomorrow, so please be sure to visit and pass the link on to a grieving mom you might know:
I've posted several give-aways for moms of HeavenBorn babies at http://hannahshopebook.blogspot.com/2010/05/heaven-born.html






And now, to my story (in limited characters for Facebook posting purposes)...

Had back-to-back mono then chicken pox when I was 8, followed by abdominal pain, eventually diagnosed as Endometriosis. Fibromyalgia began around age 15/16. Hard CFS crash at 18 (20 years ago in Sept), mostly bed- /home-bound for the next 4 years. Had some "moderately" sick years and battle through infertility /miscarriage. CFS relapsed significantly 3 years ago when our youngest was 1. Positive for retrovirus XMRV

In reply to a friend who commented on the 4 year journey to her Endometriosis diagnosis and her thankfulness that I have so much support...

Yes, I have been VERY blessed with supportive family who love me and advocate for me. Most do not have this.

I wasn't diagnosed with Endo until I was 16 (then it was only "probable" because I did not have a laparscopy to confirm until I was about 25), but pain started at 8 and grew increasingly worse from puberty onward. I started BCPs at age 16 to manage pain, crazy cycles and excessive bleeding.

Interestingly enough, a hysterectomy at age 36, while helping with much of the Endometriosis pain, did not resolve all abdominal pain issues. I have since learned that abdominal pain, especially on the right side, is common with Fibromyalgia (irritation to the psoas muscle) and to CFS (gal bladder, liver and other digestive issues). While three different surgeries verified Endo, some of the pain I had always attributed to the condition were probably related to other underlying health issues instead.

My CFS diagnosis took just 7 months - amazingly fast since CDC requires a minimum of 6 months of illness and ruling out of all other potential causes before it can be labeled. But I was SO SICK and when all other tests came back clear, that's the label that was left. Since the CFS onset (accompanied by another round of mono), I've had chicken pox about 6 more times, so I really believe my current health issues probably stem back to what my body dealt with when I was 8, when I personally speculate XMRV likely came on board.

Fibromyalgia wasn't diagnosed until my early/mid 20s, though I had been symptomatic for about 10 years already by that point.

To a friend commenting on just how young I was when health issues arose, wondering about the ages of our living children, and asking about XMRV I replied:

Our sweet miracles are 10, 7, 4. We started TTC (trying to conceive) shortly after my 20th birthday. I will be 38 this summer.

XMRV (click here to see all my previous posts on the topic) is the 3rd infectious retrovirus discovered in the human population. A retrovirus differs from a regular virus in that it actually writes itself directly into my genetic code, becoming part of my own DNA. HIV is the most well-known retrovirus, so that gives you an idea of how serious this could be and why I've been so very sick for so long. More information about XMRV and XMRV- Associated NeuroImmune Disease (XAND) can be found at http://www.xandxmrv.com/.





Last October a local, privately funded research institute, The Whittemore Peterson Instiitue (WPI) published the first Scientific paper linking XMRV to CFS, a retrovirus that has also been linked to a specific form of prostate cancer. The scary part is that nearly 4% of the healthy control patients used in the study also tested positive for XMRV meaning many "healthy" people in the general population could be carrying and spreading another AIDS-like virus and not even know it yet! Several counties are now banning blood donations from CFS patients as XMRV continues to be studied.

Unfortunately, this discovery is being largely ignored among those who could make a difference in funding for further research.

Instead of "opening the can of worms" of acknowledging this potentially massive public health threat, most would rather sweep it under the carpet (as they have been doing for a good 25 years), classify it is a mental/psychiatric disorder (rather than physical illness), or just ignore it all together.

Thank you for entering into my world with me for a moment and learning more about CFS. If you have any questions for me please post them! I will do my best to share information and experiences from my perspective. Updated information has been posted July, 2010 at More on XMRV including an outside link to a very-well ordered Timeline of XMRV.