ME/CFS is Real

I'm gradually moving more and more of my health related posts over to my Given Me a Thorn blog, but want to keep my InfertilityMom friends in the loop on significant breakthroughs with ME/CFS and XMRV. Here's the latest scoop.

A report on CBS news last night explains over 700 unique markers have been found in the spinal fluid of ME/CFS patients. There was no specific mention of Human Gamma Retroviruses (HGRVs) on the report, but the headline was that "CFS is a real disease." It's so encouraging to watch science continue to validate what those of us who have lived it have known all along!

Since there was a big news splash last week basically telling patients that we could "exercise our way to health" (a frightening recommendation that could lead to significant relapse as most of us have personally experienced), the CBS report was a breath of fresh air to see the media starting to grasp this story. To read more on last week's reports, check out Advocates Hit Back on Graded Exercise for ME/CFS. Dr. Paul Cheney states that the idea that patients can ‘exercise their way to health with this illness is foolishness... insanity."

Getting Published

I am asked one specific question frequently enough that it's time to put the resources together as a blog post. What is that question? "How can I get my book published?"

Well, honestly I'm not sure you are asking the best person to answer this question as I am one of the most unlikely published authors out there! I wrote about my journey to publication about two years back. My story is a testament to the fact that when God has a story to tell through you, He will make a way!

While I'm far from being an "expert," I'm happy to share what I can as I continue to learn along the way. Three resources I like to recommend for new writers are How To Write a Book by Mary DeMuth, Literary Agent Rants and Ramblings by Rachelle Gardner, and Intentional Leadership by Michael Hyatt (this link leads you to his ebooks on writing winning book proposals). The first is a tutorial from multi-published author Mary DeMuth, kind of a FAQ resource of the questions she is most commonly asked by aspiring authors. The second is an agent's blog sharing industry insights into the Christian market. The third belongs to the Chairman of Thomas Nelson Publishers, the largest Christian publishing company in the world.

I am particularly fond of Rachelle Gardner as she was my acquisitions editor when she was still at NavPress (before starting her own business as an authors' agent), so she walked through the entire publication process for Hannah's Hope with me. Rachelle just wrote a great piece specifically on How to Get Published.

Another fantastic resource (updated on a yearly basis) is the Christian Writer's Market Guide. It is a bit pricey for a resource that goes out of date so quickly, but sell one article to a good-sized magazine as a result of using this tool, and it will more than pay for itself. This is a comprehensive year-by-year listing of Christian publishing houses and publications along with their current submission criteria and all the contact information available for that organization.

One of the first important steps to professional writing is to build a resume. Blogging is a great start, but keep looking for other ways to build on that. For example, (In)Courage offers a guest-blogging submission area. Many online magazines, such as Glory and Strength, are hungry for regular columnists. Many of these jobs come without financial pay, but the value of getting your name known and showing consistent, quality writing will pay off in the long-run. Never underestimate the value of a good bio-line and website link as compensation for a "free" article you get published.

Kathe Wunnenberg, when she first challenged me to stop talking about writing and actually put together a book proposal, also encouraged me to put together a prayer team to walk with me through the project. (You know about Kathe if you read my journey to publication.) She said that was the best decision she had ever made as a writer and I've found this to be the best single piece of writing advice I have ever been given!

I had a prayer team support me through writing Hannah's Hope and I have recently launched a small email group to walk with me through my book on Paul as well. These teams are an invaluable part of the writing process for me. I would encourage anyone seriously seeking to use your writing talents to the Lord's glory to consider surrounding yourself with a small group of trusted prayer warriors. I can give you no more critical advice than this important key.

Please share with me if you are on a writing journey of your own. If you have any questions about writing for publication, please ask. I may not know the answer, but your question may be just what's needed to spur me into finding out the answer for myself, then of course posting the answers in reply for you. :)

Homeschooling with Chronic Illness

I hope you will join me tomorrow as I chat with Vivienne McNeny on The Sociable Homeschooler radio program about homeschooling with chronic illness.

Here's an article I wrote last year for Rest Ministries as part of an eBook of tips for living with chronic illness.

10 Tips for Homeschooling as a Chronically Ill Mom

1. Take the time to investigate your options and find what fits your physical needs and your children's learning styles, then put a plan in place. Do you intend to "unschool," use a very structured curriculum package, or find some middle ground style of educating your children. For me, using a curriculum called My Father's World makes the difference between me being able to teach my children at home or not, as it is flexible enough to be easily worked around my limitations, yet structured and well-prepared enough that I can open my teacher's book and go.

2. You may be at home, but you don't have to be alone. Look into local homeschool support networks and connect with other homeschoolers online. You can typically find support groups ranging from regional, to teaching style, to curriculum specific. Rest Ministries Sun Room offers a group just for parents who are homeschooling with chronic illness and Home School Legal Defense Association is a fantastic "clearing house" for state-by-state legal information and support.

3. Be realistic about your limitations and don't hesitate to bring in outside help when needed. We budget for housekeeping help when I get overwhelmed, and I'm currently looking for a homeschooled teenager who might be available on a regular or on-call basis to come be a mother's aid, helping with light housework, playing with kids, babysitting while I go to the doctor, etc. As a homeschooled high school student, I had a couple of moms I helped out at low or no charge, one to earn Home Economics credit and the other in a barter exchange while she tutored me in Sign Language.

4. Budget your time, energy and finances around your priorities. Seriously evaluate the reasons you are homeschooling then use your priorities to set the tone for how you spend you money and energy reserves to be sure you are staying on target and not being pulled in too many directions.

5. It's OK, make that imperative, to say "No" frequently! If this activity or energy expense isn't in keeping with my core reasons for educating my children at home, I should let it go without guilt! Life lessons of learning to work together through chronic illness can be a positive and valuable part of our educational experience that helps us keep our core values in proper priority and perspective.

6. Your school day doesn't have to look like anyone else's. I frequently refer to our style of homeschooling as "bedschooling" because, more often then not, I'm laying on a couch in the school room or the kids are all piled in my bed for hours of reading delight. Find what works for you to produce joyful, well-educated children, then work toward the desired outcome without being so concerned about perfection through the journey.

7. Teach your children to be self-motivated by setting attainable goals together and enabling them to learn to work independently at times you are not able to be as hands-on as you would desire. My oldest is going into 6th grade and my youngest is just starting K so I've taught the older two how to read lesson plans for their younger brother and for themselves. This week I was able to guide our kids through lessons the first two days of the week, then I spent the next two solidly down hard in bed, but the kids independently completed three days of school work with only minimal supervision from me, finishing their school week a day early!

8. You don't have to defend yourself. Your choices as a parent are not something you are required to explain to every Nosy Rosie who feels you either can't possibly be as sick as you claim to be because you wouldn't be attempting homeschooling if you were, or that because you are so sick, you are not making wise choices in quality education for you children by keeping them home. The decisions are ultimately between you, your spouse and God alone, so please take other's criticisms lightly!

9. While it really is none of their business, there are times you might want to have a realistic discussion with others about homeschooling while living with health challenges. Take time out to think through your reasons and potential responses ahead of time so you are prepared to give a rational explanation to those who matter to you. The following point is an example of the answer I give in such situations:

10. When people ask why we homeschool when I'm so sick, I tell them that not only is it important to my husband and I that our kids are getting the quality of education we want for them by having the freedom to select our own curriculum and overseeing their learning at home, but honestly this is the "easiest" choice for my health situation since I do not have to get kids up, dressed, out the door with lunches, then managed hours of homework at the end of every day too. I believe that parents who send their children away from home for school still have to work just as hard with their kids, only have far less time to squeeze it all into after kids have already given their "best" hours of the day to an outside teacher. I would much rather spend my limited energies on homeschooling than on parenting on someone else's schedule.

Edited in 2013 to add one more tip: 

Know when to say when. If health issues dictate a change, don't be so married to your desire to homeschool, that you can't let go of the dream if it ever comes to that. When people would question our dedication to home schooling or plans for duration (I was homeschooled through high school, so that seemed a viable plan for us as well), my answer was, "We will keep homeschooling as long as it remains the best option for our family." Little did I dream there might actually come a day when it was no longer our best option. With mixed emotions (but amazingly more God-granted peace than I would have ever thought possible), here's why this part of our lives has taken such a dramatic, and yes health-related, change.

 (c) Copyright Jennifer Saake, 2001

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"InfertilityMom" Jennifer Saake graduated from high school at home in 1990 and is now a homeschooling mom of 3 long-awaited miracles, ages 5-11. She has lived with XMRV-Associated Neuro-immune Disease (formerly known as Chronic Fatigue Syndrome) for the past 20 years, with a significant relapse of aggressive debilitation when her youngest was just a year old. She is the author of Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss (NavPress, 2005) and is currently working on a book on the life of Paul to offer encouragement for living with chronic pain and illness. http://www.InfertilityMom.blogspot.com

Would you like more tips on living life to the fullest with chronic illness? Check out this two part blog-series and my related interview with Lisa Copen of Rest Ministries, about Coping with Crisis on Top of Chronic.

More Homeschooling with Illness Resources:

Homeschooling Through Chronic Pain (part 1) - Gricefully Homeschooling

Homeschooling With A Chronic Illness (update) - Gricefully Homeschooling

Homeschooling with a Chronic Illness: 10 Tips to Help You Succeed - Ben and Me: the delight-directed homeschool

Homeschooling With Chronic Illness (podcast) - Savvy Homeschool Mom 

Homeschooling When Mom Is Sick - Home School Enrichment Magazine

Parents with a Chronic Illness - Special Needs Homeschool

Homeschooling through Illness and Disability - Home School Heartbeat

Why I Decided to Homeschool My Kids Despite My Illness - Rest Ministries

Homeschooling With Chronic Illness - Professor Mom

Homeschooling With a Chronic Illness - Not in Kansas Anymore

Homeschooling with Lyme disease - Lymeade Homeschool

Homeschooling: What about Socialization - Homeschooling, Chronic Illnesses and Other Daily Events: Living a Special Needs Life

His Grace is Sufficient - A Catholic Life

Homeschooling Through the Tough Times - Home Educator's Family Times

Homeschooling When My Child Is Chronically Ill - Uniquely Gifted

HSLDA Defends Homeschooling for Sick Children

Managing Life

It seems when life hits, it hits all at once. I'm still not back to the improvements I had been feeling prior to my massive asthma attack nearly three weeks ago, thought this week has been better than the prior two. Tuesday night I did too much and have spent most of yesterday and today back in bed. Being down doesn't mean life stops though. We are continuing to homeschool, hubby's keeping us well-fed, my parents are lending an extra hand with our kids, and I'm getting caught up on some much-neglected writing and blogging. :)
In case you haven't visited my other blogs in a while, please indulge me in a quick tour of some recent highlights:

- On the infertility and pregnancy loss support blog, I recently learned that Hannah's Hope is being translated into Czech!

- What's in a Name?, my poem on living with chronic illness, was named as a top-20 finalist in an international poetry contest.

- I'm guest blogging about inner beauty, this month talking about the hard work of love. (This link will also let you grab a 20% discount + free gift code for Affordable Mineral Makeup™.)

- If you are in need of a dose of hope for life's "desert seasons," drop by Harvesting Hope from Heartache™ too!

- Yesterday I talked here about Tipping the Scales, my ongoing journey with health and hormones and sugar and weight.

It's been a busy week! I'm thankful that God can redeem even "down" days to His glory. Please, tell me what's happening in your life???

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!