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.

Paleo "Apple Pie"

I deserved a treat today!

It was a long, uncomfortable weekend.

I visited an allergist on Friday, where I almost walked out twice because of the "culture clash" as the doctor described it. Note to Doctor, when you start off an appointment by saying that you "don't believe leaky gut syndrome exists," this really alienates your patients that attempt to be informed. Just because something isn't written up in your favorite medical journal, does not make it quack science.

I struggle with the resistance in allopathic medicine to listen to theories about the root of disease; I would think that a physician, someone who works in a helping profession, would at least be mildly curious about what is truly helping people (i.e. treating autoimmune and allergies by treating leaky gut with the Paleo diet, SCD, going grain-free, etc.)! OH well. I left on a good note, feeling like I planted a seed of awareness, and the doctor seemed to be mildly intrigued that my inflammatory and autoimmune conditions improved when I eliminated the reactive foods on my IgG panel two years ago. That's all you can do sometimes, is plant a seed. Much better than walking out and giving up :)

The doctor did run two allergy panel skin tests for IgE reactions. As far as the results are concerned, I only have true allergies to grass, weeds, cats and milk, and less significantly to peanuts, almonds and soy. 

Unfortunately my body says otherwise.

What seems to have happened is that I absorbed all of the substances that they injected me with for the test (wheat, milk, egg, soy, pollens, nuts, and so on...) and because I have IgG allergies to many of those things, it's been a miserable time.

I am finally coming out of the allergy fog, and feeling less stiff and enthesitis-y. 

Yes, I just made up a word  :) 

I finally felt a bit like myself again!

So I made Crock Pot applesauce. 

And then I made Paleo "Apple Pies!" 

(I suppose by composition, they are more like cobbler, but whatever.)

 These treats are something I came up with during our first month of eating Paleo, and I think you'll enjoy them quite a bit!

What you need:

First-

5-10 pounds peeled, cored, sliced and washed apples

1/2 cup filtered water

2+ tablespoons cinnamon (+ according to taste)

Later- 

almond meal

coconut cream (sold in cans or small aseptic boxes)

What you do:

First- make a batch of applesauce. This is easy to do!
You just need to adjust the size of your slow cooker and the cooking time depending upon how many apples you are working with.
For ideal cooking, the insert will be at least 1/2 full.
I used my six quart Cuisinart slow cooker and it was about 4/5 full of Braeburn apple slices.
I use a nifty apple corer/peeler/slicer gadget that we got as a wedding gift, and it makes this whole process fun and fast. I highly recommend getting one if you make applesauce often!

Fill an appropriately sized slow cooker insert with the clean, peeled pieces of apple.

Sprinkle cinnamon over the apples.

Pour water over everything.

Put the lid on, set to "Low" heat and let cook until apples are breaking down, water has absorbed and cooked out, and applesauce is the consistency you desire.

(I let mine go for six hours.)

Depending upon how long you cook it and how small your apple pieces were to begin with, you may want to mush applesauce with a potato masher to get a smooth texture.

(I leave mine as is; it's so soft the small chunks don't seem to matter.)

First, dish up some applesauce for yourself and whoever is with you, and make some "pies." 

Then store the rest: spoon applesauce into sterilized glass jars, let cool in the refrigerator overnight, and freeze. 

With just fifteen minutes of preparation and six hours of cook time, I have six jars full of fresh, homemade applesauce.
The ingredients cost under $5!

Making things homemade is a great way to save money and ensure your family is eating good food
without creepy preservatives or other undesirables.

For "pies"-

Spoon approximately one cup of applesauce into serving bowls. Scoop on one or two spoonfuls of coconut cream in each bowl, and sprinkle almond meal over the top. Coconut cream has a strong coconut flavor on its own, but when you stir everything together and take a bite, it really tastes like warm apple pie with a touch of cool whipped cream!

These are delicious.

Enjoy!