One Week Post Biopsy

It's been one week since my biopsy was done. Everything went very smoothly for the biopsy; the nurses, techs, and doctors were all terrific and kind which allowed me to feel less stressed which then I'm sure made for a better surgery. I woke up still in the operating room and truly had no idea anything had happened and gave the anesthesiologist a little chuckle when I asked if they did anything yet!

I was taken to recovery stage 1 to fully awaken. The nurses mentioned they would be giving me juice and crackers to eat before giving me pain meds which was a problem as I have celiac disease lol. They asked what I can eat and the things I thought of at first (fruit, veggies...trying to sound like a healthy celiac/vegetarian haha) they didn't have access to in the surgical unit, so then I said, "well, a lot of potato chips are gluten free, would that work?" They laughed but thought that was a good idea to substitute and went on a quick hunt to find them but couldn't; they called my poor daughter in the waiting area, who later told me she nearly fainted when, rather than having a nurse come get her to bring her to see me as the said would happen, she got phone call about her mother and was terrified it was bad news; only to hear the nurse on the other end say, "soooo, your mom wants potato chips....." Hilarious to say the least, especially because she didn't tell her the gluten complication reason and it sounded pretty typical of her mother (who is her father's daughter lol). She snuck in through some open doors before my nurse had a chance to go out and find her! 

My pain stayed manageable I'm sure because I stayed a good patient and stuck to my pain medication schedule. Okay, I tried to be a good little patient for my M and only got up when I needed to go to the bathroom. Is it my fault there were things to do/pick up along the way or that the kitchen was on the way to/from our bathroom? Nope. I found it a bit annoying that by day 3 when she would ask "why are you up" and I'd reply, "going to the bathroom" she didn't believe me and would follow me! How rude!! 

Early Thursday (post-op day 3) I noticed my knuckles turning red and beginning to itch, along with redness around my elbows and itching and pain. The pain and swelling of joints, especially my knees, progressed through the day and I was terribly stiff and found it hard to walk by late in the day. Recognizing this as a flare (a flare, at least in autoimmune diseases, is when the immune system is triggered whether by illness, surgery, procedures, stress, etc; the typical immune system goes to fight off whatever invader has come into the body, in the body of someone with autoimmune disease, the immune system goes haywire and fights off things mistaken for invaders, in the case of my disease my immune system starts to attack my joints and muscles) of my disease, I called and left voicemail for my rhuematologist. I got a call back on Friday for a big bump in prednisone with a 12 day taper; I'd bump up to 50 for 2 days, then taper back by 5mg every 2 days until back to 20mg, my current maintenance dosage. I'm now on Day 4 of my taper and am seeing improvements: my hand and wrist swelling has gone down and I can actually touch my fingertips to my palms again! Not quite a fist yet but getting there :) The biggest improvement has been the mobility I've gotten back with my knees, it's pretty amazing, I actually kneeled onto my right knee yesterday morning without thinking about it and had no pain. Getting up was incredibly tricky as I've lost a lot of muscle strength in my thighs thanks to Dermatomyositis, but still! I'm trying to stay in the moments of improvements and not get stuck in questioning if this is all temporary until I'm back down to the 20mg dosage. One new rapidly increasing dermatomyositis (DM) symptom has been the "mechanics hands" phenomenon. The skin on the sides and tips of all my fingers is incredibly dry, with it being especially dry and hardened and tightened on the sides of my index finger. I have small cuts on the sides of each of my thumb nails, and a lot of dryness around all sides of fingernails with redness just below the nail beds. One fingernail seems to be separating from the nail bed as well, gross I know; I smother my  hands with coconut oil now at least 3 times a day which seems to at least control the dryness a bit. I'm hoping the prednisone taper slows this process down as well so I don't lose any fingernails :(

Back to the biopsy. I was incredibly disappointed to find out that it will take 3-4 weeks to get the results back! That is entirely too much time to spend pondering, wondering, guessing what the results will be. Too much time to think, "what if it isn't DM, what if it is something completely different", and a billion other thoughts that I'm working very hard to quiet. I was never given a straight answer, prior to surgery, as to when I'd get the results. I had assumed about a week and no one said anything directly to contradict that assumption so I never pushed for details...live and learn, yes? It's okay though because the battle for treatment approval has begun with my insurance company. Not unexpectedly, they denied the request from my rheumatologist for approval to treat with rituxin (a chemotherapy drug used as an immunosuppressant) in 2, 6 hour infusion treatments. Rituxin is still considered a higher tier drug that should only be used after showing failure with several (several!!) other drug protocols first. Most, if not all, of the recommended first tier drug therapies for myositis are contraindicated for people also with Interstitial Lung Disease (lung involvement, which I have) which is why he went right for rituxin. I received paperwork in the mail yesterday from my wonderful rheumy's office with paperwork to apply for the drug company's foundation to hopefully qualify for free treatment medication. Pray, cross your fingers, send good vibes that I qualify! Having to reduce my work hours since June as the disease has progressed, and having stopped work the week before as I couldn't hold even the smaller shoe boxes without my wrists giving out, has made for some interesting financial times; but one good thing about challenging finances is it may very well help me get approved for the free medication. What an interesting little vicious circle it has become lol.

Onward, forward, upward. Today my goal is to walk outside around my building, twice. I've already accomplished one time around this morning and will take my next spin later in the afternoon. I'm  not giving in to this! 

Zero Tolerance for Gluten!

Please understand if I don't eat something when I'm visiting with you it isn't meant as an insult. I can't go ahead and try something just because it doesn't have any obvious gluten ingredients, or even if it says gluten free but ends up surrounded by/prepared with foods containing gluten. Please please please understand I have Celiac Disease (CD), I will have it the rest of my life, and yes even a tiny bit will make me sick. 

You might be thinking, "so you'll have a tummy ache or some gas or diarrhea, we all have that from time to time." Please try to understand that for me, and the many others with Celiac Disease, ingesting even the tiniest bit of gluten begins a war inside my body, sending signals of attack to the critical villi inside the intestines. Often gluten intake, for me, results in fiery pain throughout my entire body--every joint, every muscle, every inch of my body from head to toe, inside and out. Sometimes the attack takes place in my nervous system, triggering anything from panic attacks to exhaustion to a general "brain fog". This is why CD is considered an autoimmune disorder. A basic autoimmune disorder definition from NIH.gov:

...problems with your immune system cause it to mistake your body’s own healthy cells as invaders and then repeatedly attacks them. This is called an autoimmune disease. (“Autoimmune” means immunity against the self.) 

Celiac Disease can make me feel like a hypochondriac; the main reason I might feel that way is because society just can't seem to accept that Celiac Disease is real. The masses of people going to restaurants asking for gluten free foods and adding "can you just bring me one roll instead of the whole basket, because I'm limiting the amount of gluten in my diet" are just that, they are on a diet. Unfortunately with so many people doing this, too many take that as the attitude in general of anyone that says they can't have gluten. While yes, I've made the choice to eliminate gluten from what I eat I must eliminate gluten entirely from my what I eat to regain and maintain my health. 

If you have questions, ASK ME! I'm learning as I go because it just isn't as simple as "no wheat". One of my favorite bloggers Gluten Dude has this entry that helps to express some of the frustration when given the CD diagnosis Here's a short excerpt: 

...Who cares if this 21 year old has joint pain? It’s just inflammation, take it easy, take some more pills, and it will go away. I got labelled a hypochondriac. I was making it up.
Then, about 3 months ago, it was as if my body just gave up. I had no energy to do anything. I was anxious all the time, and I was hospitalized for severe inflammation in my chest that had me on bed rest for 2 weeks. Then I started getting ‘actually’ sick. In a way that counts, I guess. Up at 3 am, going to the bathroom every 20 minutes. Getting incredibly nauseous after eating. I lost a lot of weight in a very short time period. ... I was told I have Celiac. That I can’t have gluten. That I probably inherited it. [Read the entire entry HERE]

Here's a pinterest graphic that caught my attention this morning. Remember, if you have questions just ask. To get to the original graphic, click HERE and/or to read the original Gluten Dude entry that inspired the graphic, click Gluten Dude: Here is Why I Eat Gluten Free

Flourless Peanut Butter Banana Chocolate Chip Muffins!

Magic, sheer kitchen magic! This recipe had come across my facebook and pinterest newsfeeds several times and each time I saw it-or anything similar-I scoffed at the notion that one can call something a muffin that had no flour in the ingredients.

Then came the day I had loads of bananas but no flour and NEEDED banana bread. I took a chance and made them, expecting nothing but gooey globs that at least would be chocolatey! ;)

Halfway through the baking time, the familiar smell of banana bread wafted through the air. I took a peek in the oven to see how they were doing and SURPRISE, they had risen! The timer rang and they LOOKED LIKE MUFFINS!

I was still skeptical in spite of how delectable they smelled and looked. I had to taste test at least one to be sure I didn't give the kids something disgusting. I split one muffin in half and saw, well, MUFFIN! 

I ate that one and then had just one more to be certain it wasn't just one that tasted okay. I waited a couple minutes to be sure there wasn't an aftertaste and ate two more; seriously I had to try two in a row because sometimes that's what kids do, and I wanted to be sure the kids would be okay. (Did I mention the kids weren't home part of the day??) I felt fine. I had a couple more after that because I hadn't had my actual muffin treat since the first few were testing.

The kids loved them. I only had a couple more, or seven, with the kids. I shared with a friend of mine and with my Mom. Suddenly they were gone! With a visit from my daughter and son-in-law coming the next weekend, I had to make more! These were a huge hit with anyone that tasted them, now it's time to finally post the recipe. I don't know exactly where this version came from, I apologize for that. 

Enjoy!

1          Cup        Peanut Butter

2                        Bananas

2                        Eggs

7           TBSP    Honey

1 1/2      tsp        Vanilla

1/2         tsp        Baking Soda

1/4         tsp        Salt

1            Cup      Mini Chocolate Chips

• Preheat oven to 400 degrees Farenheit. Grease mini muffin pans or place mini muffin liners into mini muffin pans.
• Place first 7 ingredients in blender. Blend on high until creamy and smooth.
• Stir in chips.
• Drop by TBSP-full into pans.
• Bake 8-9 minutes, or until tops are springy and toothpick comes out clean. 
• Allow to cool 10 minutes in pan.

If you have celiac disease as I do, be sure your ingredients are gluten free.

Celiac Disease is FAD-free!

"Whether your choice to live gluten free is driven by the desire to lose weight, comply with a celiac diet, the need to avoid wheat because of mild allergies or the suspected link between gluten and autism,"

This part of a gluten free cookbook description irked me...why? Because the fad dieters (who give those with a medical reason to be gf a bad name) are listed first. 

I get it, it's all about the almighty dollar, which would explain why gf products are so expensive; all these people jumping on the gluten free bandwagon are willing to pay to play, while those of us with no other health choice can't afford it. Yes, it is a double edged sword on that products are more readily available, but at what price-both literally and figuratively to the quality of the food and the dismissal of those diagnosed with celiac disease as using the latest diet-du-jour. 

Gluten-Free Breakfast Heaven!

I don't often eat breakfast. Actually for most of my adult life I did not eat breakfast.


But when I do.....


It has to be GOOD! The biggest problem for me, and for the kids though they don't want to admit it, is the belly ache that would often arise after mounds of pancakes or waffles.

These pancakes...

had me LOVING breakfast again. 

These fluffy, puffy, tasty, cakes from the pan...

had us all ooooo-ing and aaaah-ing over the taste and texture of these delightful little meals. The pure maple syrup and real butter didn't hurt, but they tasted incredible plain, too, and even though I pigged out on 3, I had no belly ache.

These beautiful breakfast delicacies that melted in my mouth...

are GLUTEN FREE! It's true, I swear. I found a homemade pancake recipe on allrecipes.com, then played around with it to make it work for us in our new GF world. My new adventurous spirit is completely thanks to Nicole at Gluten Free on a Shoestring and her amazing recipes that are building my confidence and the fantastic Cup 4 Cup All Purpose Flour Blend which, with very few adjustments, has proven a perfect substitute in most of my formerly gluten-full recipes. Happy happy joy joy.

The recipe:

1 cup unsweetened coconut milk, warmed slightly or at room temperature
2 TBSP white vinegar
1 cup gluten free all purpose flour blend (one that has xanthan gum, such as cup4cup, or you will need to add xantham gum)
2 TBSP white sugar
1 heaping tsp baking powder
1/2 tsp baking soda
1/2 tsp salt
1 egg
2 TBSP butter, melted

Combine milk and vinegar and let sit about 5 minutes. It will curdle, don't worry--that's what it's supposed to do, you are making sour milk (just like buttermilk).

Combine flour, sugar, baking powder, baking soda, and salt in a separate bowl.

Add egg and the melted butter into your sour milk, using a whisk to combine. Pour dry ingredients into wet ingredients, whisking until smooth. It will be thicker than a typical pancake recipe! Let the batter sit for about 5 minutes.

Heat a frying pan or electric skillet over medium heat, pre-spraying with cooking spray if needed. Use a large spoon or ladle to place approximately 1/4 cup of batter per pancake. Watch them puff up quickly! When they begin to appear dry around the edges, flip and cook a few minutes more, until both sides are golden.

Enjoy!!

****
I forgot to mention my thanks to a new friend Kattie, who took time months and months ago to message me with tons of gf tips. I wasn't quite ready to take the plunge then, but it was because of her tips that I chose to use coconut milk rather than almond milk in this recipe!

Gluten Free and...BLAH

Once I post this, I'll brace myself for the backlash of naysayers and know-it-alls. I am two weeks gluten free and I feel..................NOT SO GREAT. I got my positive antibodies celiac panel results on October 29.

What is wrong with me? Article after testimonial after face-to-face after interview says, "you will feel amazing within a few day of being gluten free." I waited. I stuck with it. I ate fresh vegetables each day, made my own bread, and pizza dough, and even delicious chocolate chip cookies. I switched from my regular Cheerios to Chex. Not only do I not feel better, I feel worse, with a steady weight gain and feeling an overall sense of dragginess. I'm swollen more and my aches have increased, and I am not sleeping well, I'm foggy and emotional. I have not had one AHA moment. I just feel worse.

I'm frustrated and angry. People assume I'm just still eating junk food because I joke about it so much and because, well, I tend to be a snacker. (I can hear some people laughing right now at the minimization of that statement--oh, shut up!) I am screaming from the rooftops here, I HAVE BEEN EATING HEALTHY FOODS and NO gluten, save for 1 lone flour tortilla and a bowl of Cheerios about a week ago. This was supposed to be the Hallelujah choir awakening of my hidden, feeling better, self. I never expected to feel worse.

From all the reading I have been doing, and knowing my own body, I think it is safe to assume there are other foods I am reacting to. I know I have always had problems with corn and am just realizing there is some sort of corn (flour, meal, starch) in many things I've been eating recently. Sure, I could try to eliminate that as well; unfortunately I think there are others.  With 2 kids still in the house that are not gluten free, I don't see how I could practically track it all down. I'm not meaning to sound like a martyr (although isn't that my role as a mom??), I just don't feel that I can do this on my own, and continue to feel worse and wait up to 6 months to start feeling better.

I will continue to research and hope to find answers. I see a rheumatologist next month and hopefully that will narrow the possibilities into what is going on inside my body. Hey, I know what I need: OSMOSIS JONES! MAGIC SCHOOLBUS!! Hey Miss Frizzle, figure this out for me!

I am taking this seriously, trust me I want to feel better. I just don't see how this particular path is going to "work" right now.