Thursday, November 26, 2015

Are you thankful??

You're probably not going to believe me when I say this, but Thanksgiving is one of my favorite holidays!

I know, why does the girl with the feeding tube like a holiday all focused on food??

I've loved this holiday since I was little. There's something about a holiday that is focused on being thankful and not on buying presents or planning costumes that is just special. I love spending time with my family and watching the Macy's Thanksgiving Day Parade and the National Dog Show and football....and the food...

Or at least I used to....

To answer one of the FAQs that I get, YES, not being able eat on Thanksgiving is HARD.

Especially in this age of social media, when every other Facebook post or Instagram picture is of recipes or what people are looking forward to eating for Thanksgiving dinner. While it's certainly not a "Hallmark" holiday yet, Thanksgiving HAS joined the ranks of holidays being celebrated for much longer thank just the day.

And to be's hard...

Most days of the year, I'm okay not eating. I mean, eating is not really a favorite activity of my body...but that doesn't mean that some days aren't harder than others...especially when for weeks leading up to today, all of Facebook is taken over by people looking forward to eating until they fall asleep and planning their workouts to burn off all the calories eaten...

I so wish I could join in.

I wish it took more than a few bites of food to make me so full I'm uncomfortable and on the verge of throwing up. I wish my body understood that food is required for life and didn't react like it is a top 8 allergen and try to go into anaphylaxis from digestion. I wish I could stop the internal swelling in my stomach and GI lining in response to food moving through my GI tract that causes severe pain and nausea.

I live with this on a daily basis, and usually can manage not only my physical symptoms but also the mental challenge of living with this all the time. But on Thanksgiving, it just hurts's just harder to hope...

PLEASE, when you sit down with family or friends today and enjoy a wonderful Thanksgiving meal, be thankful! Eating is a gift, just like everything else. Don't take it for granted. We often thank God for our family and friends and ask Him to bless the food we are about to eat, but when was the last time you thanked Him for the ABILITY to eat?

Don't get me wrong, I'm so thankful today. I have two incredible families that love me and support me and Nick with everything that is going on. I have amazing friends (you guys!!) who lift us up in prayer and come alongside us any way you can. I am thankful for Herman (my feeding tube) because he has given me back so much quality of life and nutrition and health. I am thankful that God answers prayers and blesses us beyond what we could imagine or hope for. I could go on!

We all have SOMETHING to be thankful for, and I know I don't know all of your situations, but the one thing I do know is that God is good, regardless of our circumstances. And on days like today when my struggles in this life feel so weighty, I hold onto that and continue to hope. Thanksgiving is still one of my favorite holidays, but the joy comes with some sadness now.

So when you're gong around the table later today sharing what you are thankful for, don't forget to give thanks for the ability to enjoy incredible food and a body that can digest it properly! And enjoy some turkey and sweet potatoes and pumpkin bread for me =)

Friday, November 20, 2015

Three Down, One to Go!

So, three appointments down for November! And I am very happy and relieved to share that all three have been really good.

My first appointment was with a geneticist at Akron Children's. It was good. We spoke to a genetic counselor first, then the doctor came in. We were able to rule out a few conditions that have been mentioned on and off as my symptoms have continued progressing, so that was good. We also decided on a "plan of action" for some potential genetic testing to have done before the end of the year so we can take advantage of my current insurance. The doctor we saw was also going to speak to the head of the department who I was told is no longer accepting patients. He is their specialist in the conditions we are now investigating, so getting his input will be fantastic!

The next appointment was a follow-up appointment with my neurologist. All of the initial blood work had come back normal, so she had asked me to schedule another appointment to re-do some testing and discuss what we need to do next. This was a great appointment, too. I have actually seen some improvement in my walking and balance since my initial appointment with her. She was pleasantly surprised to see the improvement, however, we both agreed that I am not back to baseline. In the time since my initial appointment and this follow-up, we had discovered that I've been having consistently low blood sugars (hence the reason for the endocrinology appointment at the end of the month). She felt that the sugars may be a large component of the neurological symptoms I've been having, so we decided to hold off on any invasive testing for the time being. After my endocrinology appointment we will touch base again and figure out what makes the most sense to schedule next.

In the mean time, I'm going to be starting physical therapy (perks of working in a PT clinic right now!) to address the muscle weakness I've developed and keep that from progressing. We are hoping that may be due to my decreased walking as a result of my balance issues and unsteadiness, so working on strengthening those muscles will alleviate that as well as hopefully help reduce my muscle pain.

The last appointment I've been to in these past couple weeks was to a new allergist. I was very hopeful for this appointment since this doctor was recommended by a friend who also has mast cell disease. While it definitely started off a bit rough (I was given the wrong address for the office...TWICE...ended up 30 minutes late), it ended up being good. He is familiar with mast cell diseases and also had some new insight into some of my symptoms that we had not considered before. We're doing some more testing, and I have a follow-up in 3 weeks to discuss the results. In the meantime, we are adjusting some of my medications to see if I get any benefit from that. I also got a referral to an endocrinologist that he said is used to seeing unusual cases, so hopefully that will be more beneficial than a generic endocrinologist. Even with me being about 30 minutes late, he still spent almost an hour with me going over my symptoms and history and what I felt like were the most pressing issues.

It's nice to have a run of 3 solid appointment in the midst of continuous symptoms and making little progress. The saying is "two steps forward, one step back" but in practice I'm not so sure that's true. It definitely feels like I'm getting constantly getting pushed backwards and manage to take back an inch every so often. Even as I write this, excited for what these appointments may bring, I'm feeling my last round of meds wearing off and have a trash can nearby "just in case" what happens on an almost daily basis is going to happen again today...but that's life...

It's easy for me to get caught up in a pity party and just feeling like the world is against me...and the reality is that the world is against me since I'm not a citizen of this world, but of heaven. But at the same time, God gives us emotions and feelings and a choice. And we get to choose how we react. Yes, I have my pity parties where I cry and complain that it's not fair and feel discouraged and frustrated. But at the same time, I smile when my dogs snuggle with me when I'm not able to get out of bed. I laugh when we watch ridiculous youtube videos of goats wearing pajamas or penguins falling off diving boards even as I'm curled up in pain. I choose to enjoy the moments I can because I am all too aware of how fleeting those times can be.

Sometimes during the hardest times, the only thing that gets me through is knowing that I am held by God and that even when I don't have the words to say, my needs are still being lifted up. It is humbling to continually be reminded of how many people spread over multiple states (and countries!) are praying for me and my family.

For we know that as you share in our sufferings, you will also share in our comfort...You also help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.
2 Corinthians 1:7, 11

I so look forward to the day when this season of suffering has passed and you can share in our comfort instead of our pain. BUT, even in the midst of this season of suffering, God is using this as a testimony of who He is and what it means to be a follower of Christ. While I would not have chosen this road, I am humbled to know that despite my brokenness, God is working and using what little I have to offer so others can give thanks to Him for the blessings He gives. Thank you for walking through this season of life with us!

Sunday, November 15, 2015

Meet Leni!

So here's the promised post properly introducing Leni and what she does for me! I tried to cover what I thought would be FAQs, but if I skipped something you really want to know, please ask!

What's her name?

Her full name is Lenore, but we have permanently shortened it to Leni. She and two of her siblings (also service dogs) were named after Edgar Allen Poe stuff.  She has a sister named Raven and a brother named Edgar.

What does she do?

LOTS! Haha, she has gone through almost 9 months of professional training with an organization that places service dogs. She know basic obedience (sit, down, stay, etc.) as well as specific tasks that are to help me when I need her. She can identify my Epi pen in a pile of items and bring it to me. She can open drawers and cabinets to bring me medications. She lies next to me with her head on my chest if I pass out to keep me from getting up too soon. She uses her paws to put light pressure on my stomach when it is swollen to help reduce the pressure and pain. She picks up anything off the floor so I don't have to bend down if I'm having a super dizzy day and want to avoid passing out. And, of course, the primary reason we got her is the ability she has as a dog to detect scent changes in my body that indicate my blood sugar is dropping or I am on the verge of a mast cell reaction. She will alert me to those changes so I can treat BEFORE my symptoms become severe so I can keep my symptoms minimal or from developing at all.

She's so well behaved! Is she always like that?

Not at all!! Haha, as a service dog, she knows her job. When she is wearing her vest and we are out in public, she knows how she is expected to act. At home...that's a different story! She is only  a year and a half old, so still very much a puppy. She is a huge fan of squeaky toys (which get confiscated every evening about 9pm...), loves to run, and thinks puddles are the best ever. 

How does Bonk like her?

He's still getting used to the idea of having a sister, but he doesn't mind. She can be a bit pushy when she wants to play, but Bonk definitely let's her know when he's had enough. They do play together occasionally, and it's cute when they do!

What type of dog is she?

She is a standard poodle. I always said I'd NEVER own a poodle, and here I am! Haha, but she's been great. We are keeping her in what's called a "puppy cut" so she will not have the fru-fru cut that is most often associated with poodles.

Since she's a service dog, can you take her anywhere or are there places she cannot go?

With a few exceptions, she is allowed to go anywhere I go. As a service dog, she is not considered a pet but a working animal. That means that according to ADA, she is considered medical equipment. Anywhere a wheelchair is allowed, she is allowed. Mostly. There are a few exceptions. She is allowed to go to the zoo with me, however, she can be kept out of certain exhibit areas if her presence would upset the zoo animals or put her in danger (i.e. petting zoo areas). When I go to the ER or am admitted to the hospital, she is allowed to be with me. However, if I need surgery or have to be in ICU, she is not allowed because those areas need to stay sterile. There are a few other minor exceptions, but those are the major ones. Other than that, she goes wherever I go!

She's so cute/pretty/well-behaved! Can I pet her?

Short answer: No. Read my previous post here for a more in depth explanation. The quick reason is that I need her focused on me and any distractions (petting, talking to, making kissy noises, etc.) pull her attention away from me and could make her miss an important alert. In general, if you see a service dog, please don't pet or distract them. Their owner needs their dog for a reason and needs its attention focused so the dog can do its job.

Slightly longer answer: We can find a time! I agree, she is super cute/well-behaved/etc. I know it can be hard to resist =) Please let us know if you want to meet her, and you are most welcome to come over and play with her and Bonk! Plus you'd get to hang out with me and Nick, too!

These are the most common questions I've been asked in the few weeks we've had her, so hopefully this answers them! If I've missed anything or you have a burning question that you're dying to ask, leave a comment, send me a message, text me, or ask next time you see me!

Saturday, November 7, 2015

November Update

With all the excitement around Leni, I realized I haven't done much in terms of an update lately. The rest of the year is going to be busy with appointments and some traveling, so I thought now would be a good time to let you all know how things are going and what's coming up in Bokatopia.

The past few weeks we have seen a slight improvement! Praise God! We discovered that I've been having pretty low blood sugars quite often. Some of my neurological symptoms that I had developed seem to be correlated to my sugars, so we are hopeful that as we get those stabilized, my walking and balance will improve.

That being said, I do have a follow-up appointment with my neurologist next week. When I first saw her, we decided to start with a bunch of blood work to investigate my balance issues and walking problems. So far, it has come back mostly normal. At the time she had said if the blood work was normal we may need to do some more invasive testing to get the bottom of my neuro symptoms; however, we did not know about the blood sugar issues at that time. Please be praying for wisdom as I see her this week. We definitely don't want to do any invasive testing that is not necessary, but at the same time, we do not want to miss something just because we *think* we have a connection between my sugars and these symptoms. 

I also have a geneticist appointment this week. I'll be honest...we're really not sure this is worth our time...When my primary thought it would be a good idea for me to see a geneticist, he just gave me a general referral to see someone local. While it would be nice if this doctor is familiar with cases like me and has some actual knowledge of possible connections, I'm not getting my hopes up. We are still waiting on a referral to a specialist for a specific genetic condition that I might have, so that may be the more useful appointment, but in the mean time, we're giving it a go! I've never seen this type of doctor before, so this will be new to me...anyone gone to a geneticist and want to share your experience??

The next appointment on the schedule is the one I am most excited/hopeful for. I recently was put in touch with another mast cell disease patient in this area. We met up for coffee and it was really cool to meet someone else who knows what this condition is like! Anyway, she gave me the name of her allergist who has been really great in helping her manage her symptoms. I called and made an appointment, and I'm actually looking forward to this one! Please be praying that this doctor really does understand what is going on and is willing and able to help. While we are doing our best right now, I desperately need doctors who are not just willing to help but are actually ABLE to. 

Next up is one of my two favorite holidays of the year: THANKSGIVING!!! (My other favorite is Passover in case you were wondering.) Even though last year I couldn't eat anything, it's still my favorite. I love that it's all about being with family and just enjoying each other's company without the pressure of buying gifts. Plus, it's great that we have 2 incredible families that we actually enjoy spending time with! AND I will hopefully be able to eat some sweet potato or something small and soft this year, so that's even more to be thankful for!! 

After Thanksgiving, Nick and I are heading to visit my grandma for a few days. She turned 98 yesterday (HAPPY BIRTHDAY, GRANDMA!!!), and she is an incredible woman. It's been almost a year since we've seen her, so despite the fact that it's a good bit of a drive (over Thanksgiving no less...) we're doing it...road tripping with the Bokas!!

Last appointment in November is the endocrinologist. This is another appointment I'm not so sure will be worth my time...but for the sake of being a compliant patient, I'm going...haha! When we discovered I was having low blood sugars, my doctor got me a prescription for a glucose meter but also wanted me to see an endocrinologist. I was just scheduled through the generic scheduling portal, and while I did try to emphasize that, if possible, it would be good if I could see someone who is familiar with unusual cases, not sure what's going to happen. Oh well, hopefully by that point, we'll have made some progress anyway.

In December we will be heading back out to Minnesota for my 6 month follow-up with my specialist. I can't believe I'm typing this because it seems like just yesterday that it was June and we were out there. Maybe we'll get some decent weather this time...2 snow filled visits and 1 downpour-for-the-2-days-we-were-there visit.

We'll be spending Christmas Eve in Ohio with Nick's family, then heading to VA to see my family for about a week. Anyone in VA who wants to meet up sometime while we're there, let me know! 

So that's what's coming up in the last bit of 2015! Lots of doctors, family, regular life, and bits of spontaneity when we can =) Thank you for joining us in life and lifting us up in prayer. There are days when that is all that pulls me through. Know that while I may not be physically healed (yet), God has been doing some major work on my heart. 

Your prayers are not going unanswered!

Yes, my physical health is not perfect (although we are more hopeful recently) but I am healing spiritually. Struggles and fears and frustrations that I have dealt with for years are being replaced by peace, trusting, and expecting God to move without expectations or stipulations of HOW He "should" do it. 

Just because prayers of finding the right doctor or relief from symptoms do not appear to be answered doesn't mean they haven't been. While I still may be searching for the right doctor to treat my physical weaknesses, God has used numerous people to speak into my life spiritually and bring healing in those areas of my life. I still may be counting weeks between ER "date nights" and Epi pens and dealing with daily, persistent physical symptoms, but spiritually I'm learning how to let peace rule my life instead of fear. I'm learning to trust instead of worry. I'm learning to let go of my plans because nothing I come up with can top what God has in store.


I would take these heart changes over physical healing any day. This body is temporary, I'll get a new one someday and I can hold onto that promise. God doing work in my heart, THAT'S what's important. I'd rather be throwing up everyday and in the ER every week but be joyful, at peace, and trusting God, than to be the healthiest person in the world with no hope or encouragement or knowledge that God's in control of my life.

That being said, please don't stop praying for healing =P Because God's not doing working on me yet, physically or spiritually!