Thursday, November 13, 2014

And then life got crazier.

Life. It has been a bit insane lately, friends.

We’ve in a very backward way stumbled across a lot of health issues with our littlest guy, Greyden. The last month has involved various doctors’ appointments with a urologist, a pediatric surgeon, and a pediatric GI doctor, along with a testicular ultrasound, an upper GI (x-ray), an abdominal ultrasound, testicular surgery, possible diagnosis with cyclic vomiting syndrome, an endoscopy, diagnosis of eosinophilic esophagitis (EoE), and now allergy testing and strict diet changes in the very near future.

Meanwhile, I have been undergoing a strict elimination/autoimmune diet for myself, which has drastically changed my health around but unfortunately takes a ridiculous amount of my time and energy to maintain. And holy camoly is it expensive. I am still struggling with fatigue, some GI issues, brain fog, and other autoimmune-type responses, but they are drastically lessening in intensity and frequency, so I’m grateful for that. I’m undergoing an endoscopy next week to further investigate my GI issues. I will be curious to see if I have signs of EoE, which Greyden was just diagnosed with, since it is hereditary.

All in all, we’re holding on. I am researching and reading CONSTANTLY in my free time, trying to learn about autoimmune diseases, digestive disorders, and how to turn them around through diet and lifestyle changes. My thoughts are constantly spinning and I feel like I’m back in grad school with the way my brain hurts daily. At the same time, my faith in functional medicine and the importance of diet has skyrocketed as I’ve seen their effects on my own health over the last month and have learned about numerous others who have experienced similar results. I don’t want myself or Greyden to be required to take medications for the rest of our lives, nor do I want our health to worsen. And obviously I also want to protect Krew, who so far has seemed to avoid the inheritance of my unhealthy genetics, but who knows what potentially lies in his future.

In the midst of all this, I, for the first time in my life, found myself in a situation where I was reaching out to people, uninhibitedly leaning on them, and asking for meals to be brought to us because the stress of keeping up with our lives was too much. It was a new place to be in, but it was enlightening and taught me the importance of honesty and transparency with those around us. It showed me how much people care, how they’ll lift you up in prayer and show up in unexpected ways to support you, if you only tell them your struggles. I also found myself in a new place in my relationship with God. In the days leading up to Greyden’s examinations of his abdomen, I wrestled with the realization that we had the potential for receiving very bad news. I somehow internally accepted this possibility, and yet I knew without a shadow of a doubt that God would give me the grace and strength to get through it. I cried many tears and ate very little during those days, but I also reached a new acceptance of the brokenness of this life and the sovereignty of God’s will. It was this internal peace and calm, this steadfast knowledge that whatever was coming, I would make it through with God by my side. I know that this new leap in faith for me was only one of the many “good” things that God brought through our recent and current struggles.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” - Romans 8:28

To finish up, I want to share an excerpt from a book I’m currently reading called “Women and Stress: Practical Ways to Manage Tension” by Jean Lush. Jean shares the story of a woman who experienced miscarriage and the woman's thoughts as she walked through her intense grief afterward. This woman’s words really touched home with me regarding my recent growth in faith through the struggles we’ve been experiencing:

“I know without a doubt that “in all things God works for the good of those who love him” (Rom 8:28). Some people may read this verse and interpret it this way: God works pain and joy, good and evil into my life for my good. Thus miscarriage, stillbirth, or any other loss is inflicted upon me by God in order to accomplish good in my life. I prefer to look at it another way. God did not afflict us with the death of our baby to work a certain “good” or growth into our lives. Rather, our lives were touched by the pain of human experience, and in the process of groping for answers and understanding, growth was produced. God’s involvement with us in that growth process gave us hope, strength, tenacity, and comfort. As we came to grips with our anger and depression and guilt, God stepped into our human weakness and lifted us out of the depths of despair. That is how God worked good into our lives during our loss.”

Amen, sister. God is by our side.  He loves us, He’s using the horrible fallenness of this world to grow us, and He’s holding us through the struggles and pain.

Friday, September 19, 2014

I am not my body.

If you’ve been reading this blog lately, you know that I was diagnosed with celiac disease three months ago and discovered that I have soy intolerance shortly after. You know it’s been a rough adjustment in terms of changing my lifestyle. If you’re a friend of mine outside the internet world, you may also know that despite valiant efforts, my health is still far from fixed. I’m still bloated all the time and almost daily battle with nausea or abdominal cramps and pain. I’m tired a LOT. I still get hit by brain fog that feels like a massive hangover. I still get smacked with anxiety and brief times of depression.

Additionally, my eyes and mouth are now dry 24/7. I can no longer wear contact lenses due to this dryness and due to new allergies I have developed in response to the deposits my tears put on the contacts. I get headaches, which are a fairly recent development. Within the last month, my hair has started falling out more than usual. Somewhat surprisingly but I guess not so much so, I had bloodwork done this week that suggests that I have another autoimmune disease beyond celiac disease. I’m headed in to see a rheumatologist for further testing sometime in the near future.

Basically, it seems that my body is falling apart. And not because something is attacking it. It is falling apart because it’s attacking itself.

This is something I’ve had a hard time grasping and accepting. It’s very disturbing to think that my body is hurting me, trying to kill me. I’ve pondered this countless times, wondered at it, struggled with it as my new reality.

And I’ve come to a new realization through this, a realization that gives me some hope and comfort. It’s this:

I am not my body.

I am me, Kara, a soul. I live in this body. Yes, I tend to identify with it and call it me, but it’s not me. I am the soul living within this vessel, this transportation device I’ve been given to drive through this life. My body is not me, and I don’t have to accept it as me. I should see it as my vehicle, a vehicle I need to care for and mend during breakdowns. It is my responsibility to maintain it, but it isn’t actually me. I have no need to get too attached to it or to take its failings as a sign of failure on my part. It is a fallible vessel made from dirt, trying to function in a broken world.

I am my soul. I am Kara, and God knows my name. I am something bigger and deeper and so much more amazing than this body. And God loves my soul, so much so that he sent His Son to die for me so I could be with Him in eternity and have hope in this life.

And although this is the one body I’ve been given for this world, and it’s not treating me so well right now, it’s not the end-all-be-all. It’s what I have now, but it’s not what I have forever. I now put my hope in heaven, my hope in that day when we’re all healed and the suffering ends and we’re all together in our resurrected bodies. In moments when I literally feel like I’m falling apart and my face is stained with tears of frustration and pain, I can look upward and know that a better day is coming. God loves me, and He’s given me far more to look forward to, even after this body fails me.

I am not my body.  Praise Him for that.

Friday, September 12, 2014

Roy Boy at 2 Years

Two years old, Greyden Roy. The wonderful, terrible twos.

You are now talking and walking and running like a little person. You play with your brother and do boy things instead of baby things. Just last week you started jumping, getting both feet off the ground. Your run is smooth and you’ve become fairly adept at going up and down the stairs, so much so that we rarely feel the need to watch you on them anymore.

You love to swing, color, play cars, play with (fake) food, run around everywhere, and copy everything your big brother does. You enjoy many of the same things as him - music, singing, dancing, and puzzles, to name a few - and I don’t know how much of it is a learned behavior from watching him vs how much of it is what you would have liked even if he weren’t around. You sing the ABCs song and recognize several letters and numbers. Your vocabulary is well developed and it makes talking with you really fun.

Your ability to communicate also makes it easier to discipline you, because I can say things such as, “If you don’t stop it, you have to go to your room until you’re ready to be nice,” and you understand what I mean. On the other hand, your communication skills also make it easier for you to be manipulative, and you’re now using every excuse under the sun to delay bedtime at night, including “I can’t lay down,” “My foot hurts,” “My eyes hurt,” “more water please,” “I can’t sleep,” “door open!”...the list keeps going.

You are very difficult to shop with, either demanding to walk on your own and then refusing to stay close by, or demanding to be held when you can very well ride in the shopping cart or walk. These ridiculous expectations you have, of course, result in discipline from me and wailing from you and a lot of stares from fellow shoppers. It is a rare day that I get through a shopping trip with you and I’m not exhausted and sweating.

You’ve started preschool on Wednesdays and Fridays and are always unhappy to go into the room but then very much enjoying yourself when I come to pick you back up. Your teacher says you are always immediately fine after I walk away, so I think you just like to put on a show when I drop you off so that I feel loved. ;)

You've now moved out of your crib and into a bed on the floor in Krew's room. At first it went great, then it went not-so-great, but after a few nights of crying it out and learning that you can't just call for me or Daddy and get out of bed any time you please, you're finally staying in your bed calmly now like you used to do your crib. (Praise the Lord, I was losing my patience - and sleep!)

You are still a very picky eater and it kinda drives me insane trying to get nutrition in you. We fall back on vitamins and “fruit” packs which are actually entirely filled with vegetables these days. (You haven't noticed yet, hehe.) To top it off, you’ve been struggling with digestive issues, and I can’t help but be paranoid that you’re going to end up with celiac disease like your momma here. We had you tested and you were negative, but I also know that the blood tests are not as sensitive in children. Right now we have you drinking almond milk instead of cow’s milk and taking a daily dose of probiotics to try to get your system back in check. Sometimes I wonder if you may be lactose intolerant - we’re still trying to figure it out. Fortunately you seem fine other than the obvious digestive systems (I’ll spare the details) and it’s not affecting your daily life or your demeanor.

Your hair is what I would consider light brown with blonde highlights. You have brown eyes with a hint of hazel in them. You are currently getting your 2-year molars which I believe are leading to some occasional fussiness. You still have some chub on your arms and legs, but your torso has completely slimmed down and you now look fairly lean. Your torso actually seems to be very long, and so oftentimes your shirts look a little small compared to your shorts. You’re in size 18-24 month shirts, 18-24 month shorts, size 6 or 7 shoes, and (shockingly) still size 3 diapers. How you fit in size 3 diapers is beyond my comprehension, but they really do still fit. We stick 4s on you at night to help hold more pee, but it’s still 3s during the day. At your 2-year appointment on July 30th, the nurse measured your length at 35 ¾ inches, but honestly think that was a little off. I think you’re more like 35 inches. So that puts you around 63rd percentile for height according to online sources. You weighed 28 lbs 4 ½ oz (52nd percentile), and your head was 19 ¾ inches (84th percentile).

You are a handful at times, resistant to discipline and completely unphased when you disappoint others. You grin at the same reprimanding words that would have sent your older brother into a fit of tears when he was your age. You are persistent when you want something and will beg, whine, cry, and tantrum until your daddy and I are about to lose our minds. On the flip side, you are an incredibly loving little boy. You will frequently come up to me and say, “Mommy….” in a sweet, loving tone and then wrap your little arms around me and just squeeze. You do the same to your daddy, and it melts our hearts. You love doing “nose-nose” (eskimo kisses) and laying your head on our shoulders. It’s super precious.

Life is so much fun with you little guy. We love you!


Saturday, August 23, 2014

Happy [Very Belated] 2nd Birthday Greyden!!

Happy belated birthday Greyden Roy!!!

Yes, I am almost a month late writing this post. You turned two years old on July 28th. It is now August 23rd. Life has simply gotten away from me and I’m struggling to keep up! On the other hand, this blog is starting to become a collection of belated and overdue posts, so maybe that helps this birthday post to fit right in with the rest. :)

Nevertheless, you had a nice 2nd birthday. We didn’t do anything super exciting, but you got to be celebrated various times with relatives and friends. You enjoyed all your gifts, although your brother tried to jump in and open 90% of them for you.

I’m going to keep this blog post short and write another longer post in a few days that will cover your life over the last couple of months. I’ll include more details and pictures in that one.

However, to sum you up at your second birthday, I’d say that you are loud, talkative, outgoing, somewhat demanding and stubborn, but also sweet and incredibly loving. You keep us on our toes, that’s for sure. You’re opposite from your brother in many ways, and the combination of the two of you sure keeps life exciting!

To finish up this [unfortunately severely belated] birthday post, here are some 2-year-old pictures of you. :)

We love you, Roy Boy!

Saturday, July 19, 2014

The Perks of a Celiac Diagnosis

Yes, this is another post on celiac disease. I realize I’m writing about this a lot right now, but honestly, it’s because it’s somewhat taken over my life and it’s now something I feel passionate about. It fascinates me and frightens me and bewilders me and challenges me. Sometimes I feel defeated, sometimes I feel empowered. When I’m feeling good, I want to jump for joy and shout to everyone that I’ve got this conquered. Celiac disease has nothing on me! But then something goes wrong and I get sick. And suddenly I want to punch the wall in anger and I find myself unable concentrate on anything else in life, not just because of the effects gluten has on my brain but because I’m scrambling to figure out where I went wrong and how the disease managed to score against me again.

For today’s excerpt of my never-ending rambling regarding celiac disease, I want to share with you the perks of a celiac diagnosis.

No, the perks do not include “an excuse to participate in the gluten-free diet fad” nor do they include “an easy-to-manage solution through a gluten-free diet.” I have many words I could say on both of those items. Neither of them fall anywhere close to qualifying as a perk. But I’ll save those explanations for another day.

Rather, here are the perks I’ve come to appreciate:

1. I got my brain back.

I just realized this the other day, and this is by far the best outcome I’ve received from my celiac diagnosis. For many, many months...perhaps years...I’ve had issues putting what I’m thinking into words. From what I can remember, I never had this problem prior to pregnancies and gluten issues (which both plummeted into my life simultaneously and are very likely related). But I increasingly noticed that I was struggling to verbalize what I was thinking. I couldn’t remember simple words, words such as “table” or “sofa”. I struggled to make my sentences flow. The worst was when I would have to give directions or state the location of something. For example, Dave would ask me where I had left the laptop. I would know and would see it immediately in my head, laying on the floor next to my bedstand. But to be able to verbalize that to him felt nearly impossible. I would have to stop everything I was doing and focus 100% on how to communicate to him the location of the laptop. “It is…” that place up there...”upstairs”....laying down on that thing... “on the floor”...positional word, what is the positional word…”next to”...that thing next to the place where I sleep, what’s it called…”the bedstand.”

I know this sounds absolutely crazy. But that is really the process I would go through, every time I got asked a similar question. Speaking, about anything, could be very hard. I had no idea what the reason was for my inability to put my thoughts into words, but I had accepted it as who I was and did everything I could to not let others know about it.  I wanted to appear competent.  I often thought it was just a concentration issue and if I would just focus more instead of being so scattered, maybe I would talk well more easily.  It frustrated me and sometimes concerned me. It made me feel ridiculous and embarrassed. And I kept it to myself. I guess I didn’t realize anything was wrong because I know I had focusing and attention issues, and I figured it was related to that.

Now, since my celiac diagnosis, and hence eliminating all sources of trace gluten and gluten-cross contamination in our house, I can suddenly communicate again. Friends, it is AMAZING. I cannot even explain to you how wonderful it is to think something in my head and then be able to speak it out loud without feeling like I’m trying to shove my brain through thick goopy syrup in order to find the right words. And I am absolutely blown away that I was experiencing such neurological issues simply from trace amounts of gluten. Remember, I was eating completely gluten-free, and had been for three years, when I got this diagnosis last month. Any symptoms I was experiencing were from accidental ingestion. Last night I told a friend about the issues I’d been experiencing with being able to verbalize my thoughts, and her eyes were wide and she replied that it sounded similar to what she’s seen in people with brain injuries. That solidified the seriousness of this for me even more. My brain isn’t something I want to mess around with. And I am SO GRATEFUL that I got it back.

2. Renewed Health

This one is probably a given.  I feel better.  I’m no longer experiencing intense daily fatigue. I’m no longer getting a new cold every other week. (Yes, I previously seriously got a new cold every other week. Now I haven’t had one since my diagnosis.) I’m no longer getting canker sores. My anxiety and ADD-type symptoms have lessened quite a bit. I’m starting to be able to concentrate at work. As long as I haven’t been previously glutened, I’m not bloated and I have no abdominal pain or nausea. (When I do get glutened, it seems even more intense now. But that will be another post.) I’m not running to the bathroom in sprints at random moments. Overall, it’s a complete 180 compared to prior to my diagnosis.

3. A Support System and Place to Belong

Perk #3 is all the supportive people I’ve met and the feeling that I “belong” somewhere with my gluten issues, resulting health problems, and need for a strict gluten-free lifestyle. I’ve joined online support groups, started reading celiac blogs, and have learned such an incredible amount about it all. I, in a way, feel like a member of a new club, and the members of this club are rooting for me and helping me get my life back. I feel validated and understood by these people. It’s so motivating.

4. A New Sense of Self-Control with Food

This perk started somewhat even before my diagnosis, back when I started eating gluten-free, but it’s now been solidified even more since needing to follow such a strict gluten-free lifestyle knowing I have celiac disease. I have now learned to say “NO” to foods that I know would taste absolutely delicious. I’ve learned to walk away from snacks, drinks, even entire meals, if I think there is even a remote chance that those foods will damage my body. I’ve learned to read labels. I’ve learned about cross-contamination, manufacturing practices, GMO, organic, and certification processes. I know SO MUCH MORE about foods and what I put in my body, and I actually feel in control of it, rather than led by my cravings. Yes, sometimes I still feel downtrodden. I miss certain items. I’ve even been known to cry over it occasionally, when I’m feeling very frustrated and left out of the “normal” world where people get to eat together while they socialize. I can still remember the taste of Oreo cookies, cinnamon butter and rolls from Texas Roadhouse, and Pizza Hut pizza. I still wish I could easily go to my friends’ houses for dinner and partake in whatever dessert they have to offer. But I know that I can’t, I know it’s not safe, and I know I have the ability to say no. It’s empowering.

5. A New Understanding of My Body

Since my diagnosis, I have started to pick up on many of my body’s quirks. Perhaps this is because I’ve now had the opportunity to feel like a normal, healthy person for a short bit, and so when things go awry again I’m able to pick out what is wrong and what was likely to have caused it. Based on my symptoms, I can tell when I’m dehydrated, when I’ve probably consumed gluten, and when I’ve probably consumed soy. I know what it means to feel good now, which means I better understand what it means to feel bad. Feeling sick had become my normal prior to my diagnosis, and so I really had nothing to compare it to in order to figure out what was causing what. But now I have had at least brief times of normalcy and health, and so I know what to look for as a signal that something isn’t right.

These are the perks that have stood out the most to me. There are many others I could list, but these are the ones that have struck me as most significant. I asked a gluten-free Facebook group what they considered to be the perks of a celiac diagnosis, and here were the most common replies:

  • No more symptoms (symptoms listed included swollen legs, pins and needles in legs, night terrors, migraines, exhaustion, searching for bathrooms everywhere they go, falling asleep while driving, asthma attacks, eczema breakouts, bloating, brain fog)
  • Newly diagnosed (and hence malnourished) children starting to grow and thrive
  • Being healthy again
  • Being able to live life again
  • Easier to say no to junk food and fast food
  • Knowing you’re not damaging your body
  • Just knowing what’s wrong
  • Knowing you’re not the only one
  • No more people and doctors acting like you’re a hypochondriac
  • A deeper sense of empathy and compassion for others with disabilities or illnesses
  • Learning to cook and eat healthier foods

We all have different experiences, different symptoms, and different levels of sensitivity. But I was excited to see how many people could look on the positive side of things and realize that there ARE some perks to an celiac diagnosis, as much as it makes your life difficult at the same time.  So kudos to all of us.  We got this. :)

Related blog posts:
Celiac Diagnosis
The Gluten-Free Insanity I'm Now Living In
To My Family and Friends - A Letter and Guide from Your Celiac