Update: A New Autoimmune Disease

My platelet count was re-checked today, and they were at 8,000. For a refresher, last Monday they were 10,000 and Friday they were 18,000. Mistakenly, we thought that the 18,000 mark was a sign that they had "doubled," and were on the rise. Turns out that that is also a terribly low number, and once you're that low they bounce around in the neighborhood of eight to twenty thousand, depending on the hour of the day they draw the lab. (Wish I would've known that last Friday, ha!)

So after speaking with my doc, the good news to share is that still and again, my bone marrow looks very healthy (woohoo!). There are no problems and no issues with it, my body is making it just like it should, and that is all well and dandy. The bad news is that this low platelet thing is not because of anything else (bone marrow issue, lingering virus), but a new autoimmune disease: ITP. Idiopathic or Immune Thrombocytopenic Purpura. As my doc explained, it used to be called "idiopathic," as in, "We don't know the cause." Nowadays it is considered an autoimmune disease - the body attacking itself. When I asked if it was indeed ITP that I have, and he explained that history, I laughed and said, "Well at least they blame it on the body now, instead of saying, 'it's all in your head!'" That's good I guess :)

I explained that possibility in my last post. Not much more to say about it, other than I am going to investigate around my Paleo sphere and see if anyone out there doing Paleo AIP (Autoimmune Protocol) has this too!

I will get a call from the infusion center tomorrow, about starting the treatment for this: a weekly shot of Romiplostim. It will stimulate my body to make more platelets, so that even with my spleen destroying a bunch through confusion in my immune system, there will be enough platelets to have a healthy, clotting blood and not at risk for hemorrhaging and such. That's a good thing!
They would not normally proceed to this step right away, because the traditional treatment is to remove the spleen. But they do not like to do that in people with liver disease (such as myself). The spleen's function is so important, especially with a compromised liver, so I appreciate and understand that. I have been such a pincushion lately, I am grateful I do not have to undergo a major surgery right now :)

I'm certainly not looking forward to these shots, and haven't even begun to consider how we'll afford the bills - ah, patented Rx drugs, how expensive you are... and just when Hubs and I are starting to plan our first vacation ever.
But I am looking at this as a temporary set back. It is so important to keep that mindset in the tough times of life - battles are temporary, rough patches are just seasons. We must never forget that we have the victory through Christ, and God always has our best in mind. This is just a chapter; this is not the end of my story!

Jesus has a purpose for me, and for this chapter - just like all the chapters each one of us walks through in life.


So many of you are praying and believing with me - thank you for that! Here is the most specific thing you cam agree with me on: that my immune system will be healed, and begin to function the perfect way it was created to function - fighting off the bad, and leaving my body (the good!) alone! It is amazing that the confusion and "misfiring" in my immune system is the root of ALL (yep - ALL!) my health issues. My immune system set up attack on my colon (ulcerative colitis), my bile ducts in my liver (primary sclerosing cholangitis), my joints (polyenthesitis), food and other things in my blood (leaky gut, allergies, intolerances, asthma). When my immune system in healthy and whole again, I will be a new woman!

Thank You God for abundant life, no matter what the situation looks like - John 10:10.
Thank You for giving me the power to choose my response, and the grace to choose JOY today  :)


And thank you to my beautiful friend Emily, for reminding me of this truth:

So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever.
-2 Corinthians 4:17

Zinc Carnosine?

I checked out a few books from the library this week, including Kelly Dorfman, MS, LND's What's Eating Your Child? Not for Baby V - she is healthy is can be, thank You Jesus! But because it looks interesting and possibly helpful for my own health crisis situation. Kelly has a website as well, I just discovered: What'sEatingYourChild.com

In a chapter titled, "The Toddler Who Could Not Stop Spitting Up" Kelly writes about something called Zinc Carnosine, which she recommends for children recovering from reflux and dairy-induced stomach problems. She uses this in combination with probiotics, once parents have removed the irritating food (usually milk protein/casein in this case), to heal the damage.
On page 81 of the book, she writes, "Zinc carnosine is a little known gut repair product that has been thought to improve gastric health, specifically, the stomach lining." So of course I jumped right onto Google and typed in "zinc carnosine  leaky gut." Here is what came up: Search results.

I've never heard of this stuff, and it's possible it could really help! Hmmm...
I am on a quest to be well, and I love when nuggets like this get dropped in my lap. We have to do our best, and God will take care of the rest.

Well, off I go to read some more. (I am now seeing why I don't usually take the opportunity to rest when Baby is napping - I'm always finding something new to research, read about, and learn! NERD ALERT!)

P.S. I'm making no claims here, I'm no health professional, and I cannot be held responsible or liable for your decisions regarding your health, supplement intake, diet, etc. - as my disclaimer at the bottom of the page also states.

Jumping Off the Wagon

You guys, I've jumped off the wagon for a few days. No, not by eating gluten, dairy, or even soy or eggs - I can't ever eat those things. Still no garlic or citrus or pineapple - that would not be good. Nothing I know will outright cause allergic reactions. I went to the store and bought a basket full of treats and snacks, and some of them are very definitely NOT Paleo. I needed some help getting me through this hungry/exhausted/frustrated/completely baffled week. Here's what I got:

Yes there are some grains in there (rice). And some outright un-Paleo, unhealthy, completely junk-filled Swedish fish. But the rest is not half bad right?  :)

See? I'm not perfect in any respect, and eating Paleo full time while trying to take care of your family and home, breastfeeding a nine-month-old, dealing with chronic illness daily "stuff," and freakish allergic reactions - well it just doesn't always work out.

Do you know how hard it is to find grain-free snacks that do not contain garlic? I would be all over some beef jerky, but it's got garlic. I ran into garlic or the vague "spices" term listed on so many ingredient labels. What is the deal with that?

Somehow, I got "glutened" or ingested some other allergen the other day. I am still completely baffled as to what it was. I know something happened because I had the worst reaction I've ever had - brain fog, complete and total exhaustion physically, emotional ups and downs, itchy, sinus stuffiness, joint pains, headache... Oh was it HORRIBLE! Hubs and I have been calling and looking up the manufacturer information for the foods we ate and still haven't come across a clue. (By the way, Kraft customer service is VERY nice! We called them about some uncured Oscar Mayer bacon -nope, it wasn't that-, and Hubs was on the phone for fifteen minutes including speaking with an executive! Go Kraft, you really are trying hard to be accommodating and sensitive to those with food restrictions!)

But it's been a tough couple of days. Whatever this was it threw my guts into a flare up and I have felt more than ever before that I am not absorbing anything from what I've been eating. Just getting up and walking across our tiny house feels like dragging a cart full of boulders behind me. I don't know how much it affects my energy level when in a flare like that, but I am still breastfeeding as well and I was dreading feeding Victory each time, because of how exhausted I felt. And that's not something I want to be feeling!

So.

I jumped off the wagon. I bought some food I can grab right out of the cupboard. And a few treats to boot. And I'm only sharing this so you see that I too, am human. I am learning that, particularly with Autoimmune disease and following the Paleo AIP, it doesn't matter as much that you're eating "perfectly," as much as it matters that you are dealing with stress and not putting unhealthy pressure on yourself. So this is my little vacation off the perfect Paleo highway, and I'll enjoy it, and get back to grain-free, crap-sugar-free soon.
I'm okay with that :)

Do you ever take a break from something in your life? "Jump off a wagon" that you intentionally were on to pursue health?
Sometimes it's more important to give ourselves grace and a little break, as long as we're still keeping health in mind. Pursuing health, especially when you have autoimmune disease, is a life-long journey, full of ups and downs and adjustments. What is important is to keep moving forward and brush off the guilt and tough moments.

"Diet" Labels, What's Up with Me, and the Bottom Line Goal: Health!

Truth be told, the longer I follow this "Paleo" way of eating, the more I think about my blog, recipes, and life being stuck with a label. And that bugs me. I don't want to be labelled or stuck in a box - by myself or by anyone else. As my profile says, I am on a journey to reclaim my health by eating the foods I'm truly meant to eat. Whatever label popular culture may choose for how I eat, my simple aim remains: to cook and eat real, nourishing, healing food. I think the tendency to need to label everything is a sign of our society's food insecurities and the confusion surrounding what is truly good for us. For instance, as children, most of my generation was taught, "MILK- It does a body good," and these days whole wheat breads and pastas are touted as full of nutritious wonders and the key to a flat belly.
But I bet you know at least one person in your world who has discovered that they are gluten intolerant, or feeling better not eating dairy, or encountered some other food lightbulb experience, and this puts the FDA guidelines - that tendency to push a "one size fits all" diet on every American - to suspicion.


Personally, I tend to go to extremes with things, specifically when I hear about diets that have 'cured' people of their autoimmune disease. I get so excited! About the possibility of being well without medications, and empowered by the information and personal stories of recovery. But (after living and learning a bit) I recognize that extremism is not a healthy way of living. For one thing, it puts the entire burden of failure or success solely on your own shoulders when you are your own coach and critic. Especially with dietary changes, I am learning that everything is not black and white. I am learning that we have to listen to our bodies and consider that we each have our own unique sets of genetic material wired just so, to make us who we are. So what works for your BFF/trainer/blogging idol may not work for you. And... that is okay.

Wouldn't it be easier if I could just follow a black and white plan straight from the pages of a book? Heck yes, and I daily wish that would work for me! (For the record, I'd choose this book or this book.) I believe that food changes alone work for many people, to bring about needed weight loss, relief of joint pain, slow aging, recover energy, and so on. There are testimonies like that all over the net. But throw the factors of a leaky gut, autoimmune disease, food intolerances and chronically damaged and inflamed tissue into the mix (yeah, that's me), and it becomes quite a large Clydesdale horse of a different color...


I am very passionate about making dietary changes before turning to drug treatments that have potential adverse consequences. So when I see someone struggling with disease, I usually think, "I wonder if they've tried changing their diet... if they've tried 'going Paleo'... if they've tried..." This is because changing my own diet has helped me - specifically eliminating gluten, dairy, eggs and soy because my body is intolerant to them, and recently grains and legumes as well, because I have learned by trial and error that my guts do immensely better without them. Once I read about the damage that grains, legumes and dairy do to your guts, it was easy for me to let them go. This is the main reason our family has "gone Paleo." The two special people I live with have great health, and we want it to stay that way!  :)


On the other end of that, however, I have still not reclaimed my health. I am still waiting to find my own personal "perfect diet." I would like to say that kicking the SAD (Standard American Diet) to the curb has cured my Ulcerative Colitis and other junk. But it has not [yet...?]. In fact, this week has been so tough that I'm considering calling my GI doc and giving Prednisone another try if he thinks it will help. Because feeling like garbage is no way to live, and there are times when modern medicine needs to embraced as a gift of modern life, just like cell phones and the internet. [About the internet: Where would all of us blogging about special diets and diseases be without it?! Much more isolated and hopeless, I propose.] I really like my new GI doctor and it wouldn't be a negative experience to go see him. I'm trying to teach myself that even if I don't want to go on new meds, if something changes in my condition I should keep my doctors filled in on how I'm doing and at least see what my options are.


I'm also re-reading Breaking the Vicious Cycle and trying to muster the drive to re-try the Specific Carbohydrate Diet (SCD). I tried it  two years ago, and it helped to some degree. I stopped it before I knew that I was intolerant to dairy and eggs, so odds are it will go much better this time around, knowing that! I don't ever choose drugs first off; I always try to find another route.

Speaking of helping ourselves by making lifestyle and dietary changes, I came across this piece today, by Kurt Harris MD. I highly suggest you read it! I love his gentle but encouraging suggestion for his twelve steps: "Go as far down the list as you can in whatever time frame you can manage. The further along the list you stop, the healthier you are likely to be. Earlier steps, in my clinical experience, will give more bang for the buck."
Personally I am working on the very first step - SLEEP. Easier said than done for anyone, whether you've got a new baby at home or just love a busy life or get stuck on your to-do list so much that sleep takes a back seat!


If you've read this far without moving on to something else, thank you! I'll wrap it up. So all the aforementioned rambling to say, I don't want to hang onto a Paleo label at the expense of reaching someone with the potential of real, nutritious food. I don't want to come across as 'another diet extremist' and scare people off. I want to keep blogging because I hope - like so many blogs I've come across in my journey - that my sharing is encouraging and helping someone out there.
But just know, whoever you are my readers, that when I say "I love eating Paleo"  it's not to belong to some superior food-obsessed clique.  I think that the heart of the Paleo/Primal/Ancestral/Nourishing Traditions food movement is to embrace life at its fullest by embracing the foods that God put on the earth and meant for us to eat. Real, whole, unprocessed, unrefined, colorful, rich, nourishing, hope-filled foods.
On that note, I am going to keep my "Paleo" label for recipes because it simplifies things for my own organization. I know that when I've labelled a recipe "Paleo," it does not have gluten, grains, dairy, casein, soy... the big ones. But it is not an exclusive or inclusive label, because there are several interpretations of what constitutes "Paleo."