Thursday, December 31, 2015

2015 Recap

Another year! It's New Year's Eve, but I'm actually not waiting to start this post until the evening (I know, what?!?!). Haha, that is because my husband and I are actually going to attempt to stay up with some friends instead of heading to bed by 11pm like we (I) usually do. 

But since I didn't want to miss out on posting my annual 2015 recap, I figured I would start early. This one will be a bit different from years past. Instead of doing a list of highs and lows, I'll just give a short summary of what happened each month, good, bad, and ugly.

New year, new HOPE. I chose HOPE as my OneWord 2015, which ended up being more true than ever when we received the mast cell disease diagnosis on the 22nd after 8+ years of symptoms. This OneWord was especially true as I struggled with continuous, severe reactions for the first weeks of the year with few treatment options.

Went on a super fun snowboarding trip with my husband and parents to Holiday Valley in PA. Less than 2 weeks later, had my first feeding tube (Herman) placed. It was an NJ tube that delivered nutrition directly to my intestines to allow my stomach (and ornery mast cells) to take a break.

Got to spend a long weekend in VA with my family to celebrate one of my favorite holidays, Passover. Great time with family and friends, remembering how far God has brought us and His promises to us. Helped raise awareness and funding for rare diseases by being a part of the Running for Rare Diseases Team that ran to support the Undiagnosed Diseases Program at NIH.

Instead of losing Herman like we hoped, I ended up having surgery for a PEG-J tube which moved Herman from my nose to going directly into my stomach. Celebrated Nick's birthday with DIY at-home sushi making, and of course, a date night.

Semester ended, another school year finished. There was a mix of relief that my body could finally rest and apprehension not knowing what the summer would bring health-wise. In mid-May we joined my parents, brother, and a close friend of his on an Alaska cruise to celebrate my brother's graduation from UVA and new job in CA. The cruise was incredible and we had a fantastic time!

Not much going on since I didn't work this summer. Because my symptoms were continuing to progress, we decided that I needed to take the summer and try to rest and recover so I was ready for the fall semester. I had a follow-up with my mast cell specialist in MN which was a good appointment and gave us some more treatment options to control my symptoms. Also got to visit my aunts and cousin in WI and one of my close friends in IL.

Spent a long weekend in VA visiting my family and going to a conference. Also started having more symptom progression and developed trouble walking and balance issues. Ran my last run of 2015 this month before my symptoms progress to where I was unable to run.

Made some tough decisions in August. Not only was my body still out of control like it had been last school year, but my new symptoms continued to progress. Made the hard choice to give up my assistantship at Kent State knowing I was unable to keep up with my work and responsibilities there.

Celebrated my birthday at the beginning of the month by starting a part-time job at a physical therapy clinic. (Side note: totally a God-thing because I don't have ANY record of even applying for this job.) Also celebrated our 1 year anniversary with a weekend away at a bed and breakfast and a trip to the Toledo Zoo.

Symptoms reached their maxium severity as we continued trying to find answers. We started pursuing answers from specialty clinics around the country, desperate for insight and answers. Despite the progression of my symptoms, we still found things to smile about, liking bringing Leni home at the end of the month as my service dog!

Found some doctors willing to work with me and actually wanting to help find answers. Celebrated Thanksgiving with my in-laws and visited my 98 year-old grandma in NY.

Finishing the year how we began, with HOPE. Leni got her first non-training alert and reminded us of our hope that we will be able to gain back some control over my reactions. Traveled to MN to see my mast cell specialist and were reminded that despite how rough things are right now, we still have many options and can't give up hope. Spent time in VA with my family and was reminded WHY I keep hoping...because I have family that I love and if I give up hope, it hurts them even more.

What. A. Year.

This year has been TOUGH, but it has also brought more smiles and laughter than I could have ever imagined. Thank you for walking through life with us and being a part of our story. 

Happy New Year!!!

So many ups and so many downs
So much laughter and so many tears
Belief that God is in control
Desperation far beyond any fear

Peace in the midst of consuming uncertainty
Determination in overcoming grief and loss
Strength coming during times of weakness
Overwhelming joy because of the cross.

Monday, December 21, 2015

Road Trip to MN

Nick and I are becoming pros at road tripping. Right after Thanksgiving we took Friday-Sunday and drove 7 hrs each way to upstate NY to visit my grandma. Lots of car time... This past weekend we drove 24 hrs back and forth to MN to see my mast cell specialist for my 6 month follow-up.

We almost didn't go.

I've been so sick and not doing well lately we were hesitant to stress my body even more by the travel. In the end, though, we decided to go since he is such an incredible doctor and we are desperate for some input and direction for treatment and management of my symptoms. So Thursday night after Nick got off work, we loaded up the car and headed out!

We drove about 7 hrs Thursday night, crashed at a hotel, then finished the last 5 hrs Friday morning. Forgetting about the time change, we arrived in Minneapolis about 11:30 am. Getting there early was actually a blessing in disguise.

Dr. Afrin is not only a doctor but also a researcher. There are very few researchers in the mast cell field, so his contribution to the scientific community is especially important for me and other patients with mast cell diseases. He is just beginning a study looking to verify the genetic basis for all forms of mast cell disease, not just mastocytosis. To do that, he needs MCAS patients to do full genetic sequencing to look for common mutations associated with specific symptom patterns. Since we were able to get to MN early, I was able to participate in his study. While there are no direct benefits to me for participating, we are hopeful that the results of this study will lead to a better understanding of the mechanisms of this disease and better tailored treatment options based on specific mutations. It is a very exciting prospect in the mast cell community, and I look forward to hearing about the results!

After seeing him and his research assistant for the study, we had about 2 hrs to kill before my scheduled appointment. I had really not been feeling well Thursday evening and still Friday morning. My walking was struggling more than it had been lately, I was shakey, feeling lightheaded, dizziness episodes, nauseas, stomach pain and cramping, itching, some hives, etc. All normal for me, but harder to deal with when I can't just curl up in bed or chill in the bathroom. We found a cafe in the hospital and got Nick some lunch then crashed on some *slightly* more comfortable chairs until it was time for my appointment.

Since Dr. Afrin is so well known in the mast cell community, patients travel from all over to see him. He and his staff are not at all phased to see that we are from Ohio because I'm sure many travel from much farther away. Because they know that most travel a good distance, he makes a point to not rush through any appointments and to spend as much time with each patient as is needed. I think my first appointment with him was 2.5 hrs. While they do schedule the appointments for longer, he typically runs late because he is not willing to sacrifice the quality of the appointment knowing how much we rely on him for input. We (and I'm sure most of his patients) have no problem waiting hours past our scheduled time because we know that when he does get to us, we will get the same time that he has given everyone before us. So while my appointment was scheduled for 3:45 pm, I fully expected not to go back until about 5 pm. Surprisingly he was pretty much on time!

I do think it was the right decision to make the trip to MN despite how I had been feeling in the past few weeks. Dr. Afrin is an incredible doctor and researcher. He truly wants to help his patients and is in a tough field where right now there are so few clear cut answers. He doesn't sugarcoat anything; he makes sure that we are aware that there is no quick fix and it could take a while to find what works. At the same time, though, he is incredibly compassionate and offers as many recommendations as he can. Because we are out of state, he cannot prescribe any medications or treatments for me, but he sends notes to my local doctors who (hopefully) are willing to see what we can do based on his suggestions. He listened as Nick and I related how my symptoms had begun progressing since July and how the past 3 weeks had been particularly rough. He offered his input to where he felt mast cell disease could be the underlying source and what areas he felt like we might need an additional workup to make sure we don't miss something else. Based on my recent symptoms and reactivity, he offered his recommendations of which treatment options might be the best to pursue next. He also suggested some additional testing that could rule out any possible rare autoimmune conditions that can be secondary to mast cell diseases. In every appointment I've had with him, he always finishes by reminding us that while things may be rough right now, there is still so much to try. He encourages us to be patient, stay positive, and not to give up looking for what will work best for me. He gets it. He truly sees what rare disease patients go through on a daily basis and has a desire to help us. I am so thankful for him.

After my appointment, Nick and I got back on the road and drove about 4 hrs Friday night. Saturday we got up, drove about 4 hrs, stopped for lunch and some Christmas shopping in South Bend, IN, then finished the drive home and got back around 7:30 pm Saturday evening. I think we should get professional road tripper status - 24 hrs driving in less than 3 days!

MAJOR shout-out to my AMAZING husband who did ALL of the driving on this trip. Because I was not feeling well, Nick was at the wheel for the long haul. I slept most of Thursday night and a good bit Friday morning as well. He is an incredible husband to me and I could not be more thankful for him!

Leni was also a rockstar this weekend! Bonk stayed with Nick's parents for the weekend, and we took Leni with us. She is still young and has lots of energy, so I was a bit nervous for how she was going to do with so much time having to be quiet and well behaved. She did great! In the car, she just snoozed on the back seat or chewed on her bone. When I was sleeping, I would move to the back seat, and she would curl up with me. She was great in the hotels, and very well behaved at the hospital. We did have a bit of extra time when we arrived on Friday, so we found a nearby dog park and gave her about 20 minutes to run around and stretch her legs. Dr. Afrin even commented that he has a number of patients with poodles or poodle mixes as service dogs and they are doing great work. She was definitely happy to be home last night, and I know she was looking forward to seeing Bonk when we picked him up on Sunday. She's not perfect yet, and we've still got some more work to do on her alerting, but she's getting there and is becoming a fantastic partner for me.

We're home now for less than a week and then we're off again! This time to VA to spend Christmas with my family. Praying that the rest of 2015 is quiet medically (i.e. no date nights!). I have 1 more appointment scheduled for Wednesday, then a number at the beginning of the year. Hoping to feel well enough to be able to enjoy time with family and this holiday season.

Thank you all for your prayers and support! I cannot say enough how much they mean to us. We do feel your prayers and God is working in our lives. I am being healed. It may not necessarily be physical at the moment, but spiritually God has been moving in new ways in my life. I continue to hold onto the promise that He has given that one day I WILL be healed, and continue to HOPE.

Merry Christmas!

Sunday, December 20, 2015

100th Post!!!

Can you believe this is the 100th post for this blog??

This blog was started on a whim and as a joke after a rough week ended with the maintenance required light coming on in the car. It was ironic as I had spent the entire week doing all sorts of medical testing, and I felt like my LIFE required maintenance. And so the blog was born!

Now, almost 2.5 years later, it is crazy to see what it has become. I never thought it would be read by anyone other than my mom and maybe a close friend or two.

While it's not in my nature to be open and share my struggles, I have enjoyed knowing that I have an incredible network of family and friends and even some people I've never met coming alongside my family and me during this season of life. It is humbling, but so encouraging. It is a vulnerable place to be, and yet I feel more secure than ever. My faith has grown in leaps and bounds as I have become more open about my medical journey and the challenges associated with it.

So thank you all for your support, encouragement, prayers, and just reading and sharing!!

Here are some fun facts from the blog that I thought I would share:

Top 5 Posts:

1) Letting Go
This post was written in August of this year just before the fall semester was to start. It described the decision my husband and I made for me to give up my teaching assistantship at Kent State because my health had continued to progress to the point where we felt that it would be too much for me to continue.

2) Saying Good-bye to Herman...Kind of
This was written in April 2015 when we made the decision that I needed surgery to place a "permanent" feeding tube after a 2 month trial with an NJ tube.

3) 30 Things About My Invisible Illness
Invisible Illness Awareness Week comes the last week of September every year. This was my post this year to do my part to find a cure/treatment for mast cell disease. There's no cure/treatment without research, no research without funding, and no funding without awareness, so I'm raising awareness!

4) Meet Leni!
Not surprisingly, you guys enjoyed reading a bit about the newest addition to the Boka family just this past October. We brought home Leni as my service dog, and we are continuing to grow in our partnership as a team.

5) Quick Update
Also written in April 2015, this was written from the hospital after I woke up from my PEG-J surgery.

There are views from all over the United States, including Oklahoma, Colorado, California, Alaska, Virginia, Ohio, Florida, Michigan, Wisconsin, New York, Massachusetts, and more! There are also international views from Ecuador, Turkey, Germany, and Russia.

Thank you all for reading and following and doing life with us. I know that our struggles are no more than your struggles and am continuously humbled to know how many people are regularly lifting us up in prayer.

It's been fun for 100 posts, here's to 100 more!

Tuesday, December 15, 2015

Choose Your Own Adventure

Anyone remember the choose your own adventure books that were popular about the time I was in middle school???

You would start reading a story, then you would get to a part where the main character would have to make a decision. You, as the reader, would have 2-3 options and there would be instructions on which pages to turn to so you could continue the story based on which choice you picked.

Sometimes my life feels like a "choose your own adventure" book...

Here's an example:

It's 1pm, and I am meeting a friend for coffee at 3pm then have Bible study at 7pm. I get up off the couch and realize I'm feeling shakier than usual, my heart is racing, I'm chilled but sweaty, and I'm blacking out. I check my blood sugar and it's 49. I try drinking some juice and eating some gummy bears but only get it up to 55. Now I have a dilemma...

Choice 1: Since my neurologist has warned me about letting my sugars drop or allowing them to stay below 70 for extend periods of time, I know I have to get my sugar up. The risk of long term neurological effects from chronically low sugars is something I want to avoid. But since juice and candy isn't working, I turn to PB2 or scrambled eggs for some protein to hopefully stabilize my sugars.

Choice 2: Because I'm not only having low sugars but am also dealing with my day to day GI issues, I know that eating anything is not going to go well and will probably result in severe pain, nausea, vomiting, and swelling. Since I'm not a huge fan of pain and nausea and throwing up, I decide to try more juice, some soda, and grab another handful of gummy bears and hope it is enough to at least get above 70.

So now it's your turn! Which do you choose??

I know, catch-22...I risk long term damage if I let my sugars consistently hang out below 70, but some days My GI tract just cannot handle anything solid and I risk nausea, vomiting, painful swelling, which can lead to needing an ER trip. Choose wisely...

Let's try another example:

It's about time to travel back to see my specialist in MN for my 6 month appointment. However, I've been so sick the past few weeks, I've felt like I'm on the edge of a major crash. The stress of the travel might be enough to push me over the edge. At the same time, this is the doctor that understands my condition better than anyone, so if anyone will be able to offer some insight, he's the one. What to do?

Choice 1: Decide that in order to best manage my health, it's just not worth making the trip. My specialist is fantastic about corresponding with local doctors, so we can still get his input without making the 28 hour trip. This can potentially prevent a major crash, but hopefully still get some new treatment options.

Choice 2: Take all the precautions possible and make the trip. This doctor knows more than almost anyone about mast cell diseases, and we are desperate for his input. Even knowing that it could cause a major crash, this may be one of few opportunities we have to actually see him in person and communicate my symptoms and the progression so he can make recommendations based on actually seeing me and hearing in person what is going on.

Another catch-22...there's no right answer but there may be a wrong one...and there is no way to know until after.

It seems that regardless of which choices I make, the next part of the story reads:


I think I need a new book that has better endings...

Saturday, December 12, 2015

Now on Instagram!!

I finally broke down and joined the masses...yes, I now have an instagram account...

I'm half still in an unbelieving state of shame that I have conformed...and half excited!

Be prepared for an onslaught of photos (probably mostly of Leni and Bonk) and a peek into life as a Bokatopian =P

One of the reasons I decided to join Instagram is because I get a lot of questions on what I do during the day, how I'm feeling, and just generally what is going on in Bokatopia in between blog posts. I like to take random photos throughout the day anyway, so I thought this could be fun and a way to share what's going on with you guys. So here goes my attempt to #hashtag =P

Follow me at kboka27 and I'll try to find you guys!

Friday, December 11, 2015

First Mast Cell Alert!!

You know that feeling when you spend so much time going over the same concepts and whoever you are teaching just doesn't seem to get it...but then come test time they surprise you and do great???

That happened last night...

Leni got her first "non-training" mast cell alert!!!!

I was at the annual Christmas concert at our church with my in-laws watching my husband in the choir. Leni was being great and squeezed herself into the narrow pews and found herself a spot on the floor. Just before the end of the concert, she started moving around and finally got herself into a sitting position and pawed me.

Initially I just brushed it off and had her lie down again. I thought she was just getting antsy and was ready to leave. Less than 5 minutes later, she was up again and pawed me again. I put her back into a down-stay for the second time. The concert ended, and we were just waiting for people to leave so we could get out since we were up in the front. I let Leni stand up since I knew she had been cramped for a while, and I was expecting her to be ready to wiggle around and get out of that pew.

She was a bit wiggly, but she barely took her focus off me. Even with people all over the place and lots going on (a situation where she would usually be pretty distracted), she sat and pawed me again, this time twice in a row...

My mother-in-law asked if she was alerting to something, and it finally clicked that maybe she wasn't just being antsy but was actually doing her job!

She was probably thinking, "Come on, Mom, we've been working on this for weeks, haven't you learned anything?? I smell that scent, I paw, you give me a treat, it's simple."

I finally rewarded her, and we got out of the room. It was now about 30 minutes after her initial alert, and by this point I could feel my symptoms starting. I was getting flushed, sweaty, dizzy, my stomach was cramping, I got more unsteady on my feet, and was having some walking issues. We got outside and I was able to take my meds and let them kick in before we left.

Leni was so so good =) I am so proud of her. Even when we were outside and I was doing a bit better, she barely left my side. Even when I gave her the okay to "say hi" to a friend who was with us, she looked at him briefly then was right back to me.

We were able to go home (instead of to our favorite local establishment, the Twinsburg ER), and I was able to avoid a major reaction thanks to Leni Beni. Hoping that as we both get more in tune with each other, I'll recognize her alerts sooner and she will pick up on my scents sooner so I can even prevent the symptoms that I did get.

Baby steps! But I feel like we made a huge one tonight!

The Christmas concert is always great, and I was so glad that I went and was able to watch my husband and support him in something he loves doing. Besides, at least in my mind, his select ensemble group that sang White Christmas was the highlight of the show...not that I'm biased at all =P

Getting the alert from Leni was another reminder that with her I will hopeful regain some control over my very unpredictable symptoms, and hopefully Nick and I will be able to have more REAL date nights instead of our ER "date nights." Plus, unlike last year, I didn't leave in an ambulance!! That's always a good day in Bokatopia!

Thursday, December 3, 2015

Feeling Defeated

It has been a week and a half of unrelenting symptoms.

It is exhausting.

I'm used to daily symptoms that come and go. I'm used to throwing up on a regular basis. I'm used to nausea and pain and dizziness and swelling and itching and flushing and headaches and more. I'm used to planning my days around how I'm feeling. I'm used to the day-to-day ebb and flow of good and bad moments. I know what life with a chronic illness feels like.

But while I do typically deal with daily symptoms, I get ups and downs. Whether it's moments throughout the day that are better than others or days that I feel better before crashing again, I'm used to the ups and downs that come with a chronic condition.

But when the ups don't come and I'm stuck in a constant downward spiral...I'm NOT used to that.

I'm not used to not getting a break in between symptoms flares to recharge and recover. I'm not used to constant abdominal swelling so painful and uncomfortable that even normal clothes touching my stomach is almost unbearable. I'm not used to having bowel moments so problematic that when they do come, I throw up from the effort. I'm not used to headaches that result in me losing my vision. I'm not used to new respiratory symptoms that appear with no obvious trigger. I'm not used to feeling so completely exhausted every day just because I've lost the moments that give me the chance to rebuild what little strength I have to be ready for the next round and running so far below empty I'm just waiting for the major crash.

I'm used to dealing with a chronic illness.

I'm not used to dealing with being sick all the time.

Even though we don't have a "cure" yet or really a treatment protocol that completely controls my symptoms, I do have medications that help me manage in the moments of severe symptoms and things I can do to give me some relief. I'm used to going through those meds faster than I go through my "safe" food in the kitchen.

I'm not used to being on those meds round the clock just to get to a point where I can function semi-normally. Instead of using them to resolve my severe symptoms, I'm using them just to make it bearable to get through my day.

The past week and a half has been so tough. Last night as I was getting ready to attempt to go to bed, I had this overwhelming feeling of defeat and exhaustion and feeling like I just can't keep fighting like this. That moment lasted about 15 seconds because I realized that I don't really have a choice. I didn't choose for this mast cell disease to start and I certainly don't seem to be able to choose when it is going to end.

That's life. I can't choose to stop fighting because it's not my choice. I might want to, but guess what, T-O-U-G-H. That was the first word I learned to spell (seriously, not joking, just ask my mom =P).

Life's not fair. We have to deal with stuff we don't want and most often don't get any say at all. I'm tired of fighting and feel like I can't keep going...TOUGH.

It's the answer to my frustration and what I have to be. No choice.

But you know who did have a choice? Jesus. He knew what he would go through and came anyway. How much harder would life be if we knew exactly the pain we would face? I don't know how I would function if I knew for a fact that my illness would continue progressing and become 100% worse. I know it's a possibility, but I also know that I have hope and can believe that things will improve and I will be able to run and eat again.

Jesus had a choice and chose pain and suffering and separation from God so I wouldn't have to go it alone. Even Jesus went through defeat before He came out on top.

I'm feeling defeated right now. I'm not used to this.

Jesus was defeated, and that was not the norm for Him either. But He accepted that momentary defeat so He could have the ultimate victory. And because of His victory, I know that my defeat won't last either.

But in the meantime, please be praying for relief from symptoms and some answers to how we can treat this. I am running on empty and am out of spoons.