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.

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! 

Saturday, October 31, 2015

PLEASE READ: We need your help!

THANK YOU for taking the time to read this. If you read my earlier post, you know that we are truly hopeful that Leni will be a big piece of the puzzle in terms of getting better control over my unpredictable symptoms. However, we cannot get her to that point without help from you as our friends and family.

Here's what you can do:

Ignore Leni.

I know, I'm asking a lot =P

But here's why:

When Leni and I are out in public, she is "on duty." She is not a pet but a working dog. According to the ADA, a service dog is considered medical equipment the same as a wheelchair or cane would be. I am allowed to take her with me because she is able to perform tasks for me that I am unable to do for myself. The main one that we are relying on her for is her ability to alert me to changes in my body so I am able to treat before I develop symptoms and avoid severe reactions. This means that when we are out, her focus needs to be on me.

I know it will be tempting to want to pet her and talk to her when you see us at church or school or in stores. PLEASE resist that temptation (please still come say "hi" to me, just don't focus on Leni). While she is very well trained and knows what her job is, she is not a robot. If she is distracted by petting and wanting to play (because she really is very friendly!) she is not able to do her job and could miss alerting me to an oncoming reaction. Please respect that and treat her like you would any other piece of medical equipment.

That being said, Leni is still a dog. When we get home and she is "off duty,"she is able to act like the 1.5 year old dog that she is. If you would like to meet her and play with her, let me or Nick know! We would love to have you over to hang out and meet the newest member of our family! Leni would LOVE to meet you (and Bonk would be super excited to see you too!).

Thank you for taking the time to read this. Please know that we do not want to be mean or rude, but we do need Leni's focus on me when we are out and about. There may be times when it is okay for a quick pet or greeting, but unless you ask us first and we okay it, please assume that Leni is working and needs to keep her focus on me.

Thank you for your support with this!

Friday, October 30, 2015

Race Report: Providence Marathon

No, I am not all of a sudden back to running...I wish!

BUT if you remember, earlier this year I blogged about being a part of the Running for Rare Diseases 2015 Team (read here). This team was formed with rare disease patients and running partners pairing up to raise awareness and fundraising for the Undiagnosed Diseases Program at NIH. I was paired with Fran Crofts as my running partner (meet her here!) who ran the Providence Marathon at the beginning of May.

I know it's 6 months later (and Fran is about to run her NEXT marathon!!), but here is her race report for the 2015 Providence Marathon from May 2.

This was my 3rd marathon start, and first marathon run on behalf of another. I found out about this opportunity through my employer and joined the team. The Genzyme Running Team exists to raise funds for the National Organization for Rare Disorders, specifically to fund additional testing of patients who seek a diagnosis for a rare disease. The GRT connected me with my patient partner, Kylene, whose name I wore proudly on my singlet. It was great to hear the cheers "Go Kylene" throughout the race, which reminded me of why I was running on this particular day.

It was a beautiful day, about 50 F at the start. I started very slowly based on my most recent marathon experience in New York City in November 2014, where I went out much too fast and struggled miles 12-26. For this race, the first mile was 11:30, second 11:45, third 12:00 - yikes, time to pick it up. By mile 7 or so, I picked up the pace to about 10:30 and was able to keep that up until nearly mile 21.

The race wound from the picturesque downtown, past several hills until a big hill at mile 6, then entered a residential area near the water where there were good, cool cross breezes and it was overcast. Around mile 10, the sun came out from behind the clouds and it was suddenly much too warm. Much of the second half was on a flat bike path. The hardest mile was mile 20 due to heat and fatigue. I slogged on a while longer and at mile 21.5 got a bit of a 2nd wind, and for the first time in any race over 10 miles long had a feeling that I had some gas left in the tank. I started getting excited around mile 23 when I realized it was completely within my grasp to beat my goal of 5 hrs. I finished in 4:50, thrilled to have beaten my goal. Thank you, Kylene for inspiring me!

Thank YOU, Fran for helping to raise awareness and funding for those of us that deal with these rare diseases every day! Being at a point right now where I am unable to run makes it even more real that we need awareness to get funding for research and ultimately find treatments and cures! It is cool to be able to "run" with the team even if I am not there in person and be cheered on by spectators. It is a reminder that just because living with a rare disease can feel isolating, I (we) will not be alone in this. THANK YOU to the Running for Rare Diseases team for encouraging us as patients as you run for us and the rare disease community!

Help me cheer Fran on this coming Sunday, November 1 as she runs the NYC marathon!

Thursday, October 29, 2015

Big News!

What do you do when you are the poster child for #modernmedicinefails?

What CAN you do?

For anyone living with a rare disease, and often just chronic illness in general, there comes a time when you realize that doctors really don't know more than you do. In fact, for me, a lot of times, doctors actually know LESS than I do. When everything that "should" or "might" help me doesn't work, sometimes you just have to take matters into your own hands...

Don't get me wrong, I'm still seeing way too many doctors (geneticist, allergist,  and endocrinologist in November, mast cell specialist in December, trying to get in to 2 specialty clinics sometime this get the picture) and still trying to figure things out, but we have decided that maybe there are other ways to better control my symptoms outside of what doctors can offer.

I've already tried a number of "alternative therapies" some of which have helped a bit and others have done nothing, so we are continuing to pursue other options. After a lot of prayer, hours of research, and God opening some doors, we have made a decision that we believe will help me gain some control over my reactions.

We have decided to increase the population of Bokatopia from 3 to 4!

No, I am NOT pregnant! But we are adding a member to our family. She is 1.5 years old, about 25 inches tall, and weighs close to 50 lbs. Her name is Lenore (aka Leni), she is a Standard Poodle, and she is my service dog.

Her primary tasks will be alerting to oncoming anaphylaxis, low blood sugar, and syncope (passing out). She is already trained in basic obedience and routine service dog tasks, and we will be continuing her alert training to be specific to the scents associated with my reactions so she learns to be in tune to changes in my body.

So that's our big news!! We are excited to welcome Leni to our home and hopeful that she will be a major part of my symptom management. Stay tuned for another post properly introducing her!!

Friday, October 23, 2015


Let's do some comparisons, just for fun!

Scenario 1:

You're relatively healthy, but all of a sudden start developing some new symptoms that could be not so good. You call your doctor and explain what is going on to the nurse. She may alleviate your concerns right on the phone, or schedules you for a same day appointment to see the doctor. If you do have to go in for an appointment, you'll likely walk out with some answers from the doctor either in the form of medications or suggestions.

Seems relatively straightforward, right?

Let's play again...

Scenario 2:

This time, you've got a chronic illness. For the sake of this purely hypothetical example, let's go one step further and say that you have a rare disease that is poorly understood by many doctors. Since you deal with symptoms on a daily basis, you don't feel the need to go to the doctor except when a new and potentially concerning symptom appears.

So let's say that happens. You call your doctor and he agrees to see you. So far so good. But since your new symptom is unexpected for your "normal" and unusual even for a "typical" patient, your doctor decides that it's beyond his scope and you need to see a specialist. Okay, fair enough, but since specialists only see special cases, and you don't yet have an established specialist for this new issue, you're at the back of the scheduling queue. 

When you finally get to scheduling, you are informed that the earliest possible appointment is more than 6 weeks away...but that's okay because it's not like you really NEED to see this doctor anyway, right? It's not like you're having repeated episodes of anaphylaxis and are frequently on "epipen watch" in case things progress all of a sudden to some unknown trigger...or that all of a sudden you can't walk well and had an inconclusive brain MRI so your doctor wanted you to see a neurologist to make sure things are okay...or that you started having very low blood sugars that won't seem to come up DESPITE being on continuous tube feeds...good thing or it might be SLIGHTLY hazardous to your health that you can't see these specialists for over a month...

And let's not forget that in all likelihood, when you finally get in to see the specialist, they'll tell you they have no idea why you've developed these new symptoms, have never heard of your rare disease or seen a patient like you before...BUT that's okay because at least they know the name of ANOTHER specialist who MIGHT be able to help you...

Oh, but wait, since this next doctor is now an extra specialized specialist, the wait time to schedule with him is now 3-4 MONTHS...but that's okay because it's not like you NEED to see him either, right? You're just in this because you have nothing better to, it's not like symptoms keep progressing in the mean time either...good thing, too, or you might be frustrated by the long waits and lack of answers...

Just seems ironic to me that the healthier you are, the easier it is to get in to see doctors and get answers to health concerns. The more you actually NEED medical help, the less likely your are to actually get it WHEN you need it.

Good thing this is all completely hypothetical, and I've NEVER had to deal with ANYTHING like this...

Wednesday, October 21, 2015

No news...

You know the phrase, "No news is good news?"

In the chronic illness world, "no news" usually means you are waiting...again...

Waiting on referrals...

Waiting to hear back from doctors...

Waiting on test results...

Waiting on insurance coverage...

Waiting on medications to be ordered...

Waiting to schedule with specialists...

Waiting for this season to pass... (sound like winters in Ohio anyone??)

So in the case of this blog, no news is not necessarily good news, it's just that...NO...NEWS...

We're waiting on referrals from my PCP to be able to apply for two specialty programs, one at the Cleveland Clinic and one at the National Institutes of Health in MD. We're waiting to hear back from my neurologist with results from the tests that were run to investigate the cause of my trouble walking and balance problems. We're waiting on my doctor to call in a prescription to my pharmacy to hopefully be able to monitor my blood sugar better. We're waiting on insurance issues to get sorted out so we are not receiving $750 ER bills that we shouldn't have to pay. We're waiting for a call from the scheduling department to get in with an endocrinologist.

Lots of waiting...

I get people telling me a lot "I don't know how you do it" or "You must be so strong" when they ask how I'm doing and I share that we still don't have any answers. I don't know how to respond to that...I'm not trying to be someone's inspiration or have super human strength in the face of adversity, I'm just doing what I can to keep my head above the water when I feel like I'm at the bottom of Niagara Falls.

If you were in my shoes, you'd do the same thing. You know why? Because you don't get a choice. I smile because if I don't, you'd be able to see the fear and uncertainty behind my eyes. I laugh and shrug things off because if I didn't, I'd probably start crying in frustration and discouragement. When you see me and ask how things are going, and I just smile and say "good," it's because I just don't have anything new to share.

That unfortunately is life with a chronic illness. There is no "getting better." There is hope for improvement and we ARE hopeful that one day I will have things managed much better than I do now, but I will live with mast cell disease for the rest of my life.

We hope that one day I'll spend more time with my friends than I do in emergency rooms and we'll be able to start investing in our own retirement plan instead of my doctors. We hope that one day our conversation starters are less "how are you feeling" and more "where are you going for dinner."

So when I say nothing much is going on health-wise, that doesn't necessarily mean that things are good or I'm feeling better. It just means that we have nothing new to share, my doctors don't know what to do, and we're stuck in the Bermuda Triangle of chronic illness, where referrals are lost, results take forever to get back, and nothing is being done in the mean time to help me feel better.

So right now, we have no news to share. I know, writing a blog post to share nothing...makes perfect sense...but we are still so thankful for all your prayers. Life doesn't get easier in the waiting time between doctors and referrals and prescriptions. If anything, those times are hard because there is nothing we can do but keep on keeping on and hope that maybe someday we'll hit the jackpot with a medication or treatment. It's during these waiting periods that your prayers truly carry us through.

We do the best that we can to manage on a day to day basis, but when doctors don't have much to add to what we already know, sometimes the waiting seems to stretch on forever. When I just get passed from doctor to doctor because no one seems to have any idea what to do for me, Nick and I are left on our own to try to figure things out for ourselves. We're getting honorary degrees out of this, right??

Thank you so much to those of you that reach out to me and Nick with encouragement or funny pictures or cute animals. Please know that the 2 minutes it took you to write a text or send a facebook message means SO much. I may not respond right away (or at all if it's been a rough week and I forget, sorry!), but please know that God is using every silly photo and emoji to brighten my days and lift my spirits.

Even thought no news isn't necessarily good news, God is always good and that's the best news of all!

Wednesday, October 7, 2015

It's my LIFE

I understand that I am not the only patient that my doctors see. I know that for most of the doctors I see, I'm the only patient they've ever had with mast cell disease. I get it. I don't ever want to be labeled as a problematic or demanding patient or the one that everyone dreads to see. I've worked in medical offices and I know what it's like to groan when certain patients come in. I don't want to be "that patient." I do my best to always have a smile on my face regardless of how I'm feeling. I try to be polite and respectful and not ask for special favors. But sometimes, I wish I could just look the doctors in the face and remind them IT'S MY LIFE we're talking about.

I was referred to a new allergist/immunologist by my PCP to look into some more specific treatment options that my mast cell specialist had recommended. The appointment seemed to go well, and I was encouraged when I left. He was going to contact my specialist in MN and come up with a plan of action. I was hopeful.

So we waited.

A month later, after not hearing from him, I followed up.

His nurse took my message, said he was out of town, but would get back to me once he returned. Then she called me a couple days later. The doctor had talked to a colleague of his who said that he was not sure my mast cell diagnosis was legit. So my doctor decided hat he had nothing to offer me. He did not contact my specialist and had no intention of doing so.

Like I said, I get that I'm not the only patient that my doctors see. I also understand that I'm a bit more complex than other patients may be. I'm not trying to ask for special treatment, but sometimes I wish my doctors would think about what goes on in between the appointments.

During that month that my doctor was supposedly contacting my specialist, he was still going about his every day business. He probably saw dozens of patients, wrote many prescriptions, and went home to his family at the end of the day. Did he ever once think about what that month looked like for me?

While I waited to hear back from the doctor...I had to use 2 epi pens, made 4 ER trips, missed Bible study and leading the high school youth group, had to cancel plans with friends and rearrange meetings at school. I threw up more times than I can remember, was too sick to walk from the bedroom to the bathroom to get my medications, passed out and gave myself a concussion because I hit my head, and spent many days and nights on "epi pen watch" and in a drowsy, drugged state trying to keep my reactions to progressing to anaphylaxis.


You made the choice that it was easier to not have me as a patient. But I don't get a choice. While you spent that month going about your business, I spent it HOPING I had finally found a doctor that might be able to help me. When I finally heard back after *I* called you to follow-up, it was just affirmation that as a rare disease patient, I am on my own to advocate for myself.

Most doctors don't like it when patients walk in to appointments with print-outs from online searches, or ask about specific treatment options, or seem to be well researched in their unusual medical conditions. But what are we supposed to do when we get brushed off by doctors more often than not and are left on our own to manage potentially life-threatening reactions???

I would like nothing more than to leave my care in the hands of a capable doctor who is truly invested in helping me manage my symptoms and regain my health. I have that doctor in my specialist in MN, but as a specialist 14 hours away, I need a local team of doctors who are willing to coordinate with him. When I get brushed off after waiting months to schedule and hear back from doctors, it may mean nothing to the doctors who dismiss me, but it just means that I have no choice but to be that patient that doctors don't like.

If they are not willing to help me, then I have no choice but to take control of my own healthcare. I don't like walking into appointments with an agenda and a list of requests for my doctor. I wish I could go in, just tell them my symptoms, and have them give me answers. But I don't have that luxury.

So to the doctors that I have to see in the future, I'm sorry, but I have no choice but to be "that patient" you I'm just another 30 minutes on your schedule, another name in your computer, but I've got a bit more riding on each appointment...


Wednesday, September 30, 2015

30 Things About My Invisible Illness

It's Invisible Illness Awareness Week!


Somehow it's hard to get excited about something I never wanted to celebrate in the first place. But my reality is that, right now, this is my life. And if I'm not willing to speak up on behalf of the mast cell community, who will?

The benefit of an invisible illness is that no one has to know that anything is wrong. The downside of an invisible illness is that no one knows that anything is wrong unless you tell them. There's no research without funding, and no funding without awareness. So since I'm not independently wealthy, this is my effort to raise awareness for mast cell disease and the invisible illness community.

Every year, this "30 Things About My Chronic Illness" meme circulates in the chronic illness community to help raise awareness for the invisible and not-so-invisible conditions that we deal with every day. Since it's Invisible Illness Awareness Week, here's my "30 Things" to share with you!

1. The illness that I live with is Mast Cell Disease. (And gastroparesis and POTS, but since we think these are the result of my MCAS, I'll leave it with that.)
2. I was diagnosed with it in the year 2015. (January 22, 2015 to be exact)
3. But I had symptoms since I was 17 years old, so 2007.
4. The biggest adjustment I've had to make is adjusting to my "new normal" and not being able to do what I used to be able to do.
5. Most people assume that when I look good, I feel good.
6. The hardest part about mornings are the time before I take my meds and exercise. I am very symptomatic in the mornings and it can be a struggle to get going, even though I love to watch the sunrise!
7. My favorite medical TV show is House! I just wish all doctors that dealt with patients who have unusual medication conditions were as determined as he is to find answers...
8. A gadget I couldn't live without is my cell phone. While at times the constant connectedness of our society is annoying, I am very grateful to be able to call Nick or family (or 911) at a moment's notice and from anywhere if I need to.
9. The hardest part about nights is SLEEPING! Pain and nausea aren't so kind for good night's rest...and who knew you could be dizzy while lying down with your eyes closed?!?!
10. Each day I take _____ pills and vitamins. It depends on the day and my symptoms, plus half my meds aren't even in pill form anyway!
11. Regarding alternative treatments I am willing to try anything that makes sense and doesn't have the risk of serious side effects.
12. If I had to choose between an invisible illness or visible, I would choose invisible. I like having the option to be able to hide it if I want to, although Herman has kind of changed that, but still. =)
13. Regarding working and career: I'm doing it! Kind of...I'm still continuing to work on my PhD and will hopefully graduate sometime in the next year (or so). I'm also working a part-time job to help fund my doctor's retirement account...
14. People would be surprised to know that I'm not sorry that I'm sick. I have days that I struggle, I cry in pain and fear, I am scared of what the future may bring, I miss running and being able to do what I used to be able to do, I hate that my family has to deal with this too, but along with all that, I also believe 100% that God is good and that he can use me regardless of my circumstances and that one day I WILL be healed.
15. The hardest thing to accept about my new reality has been that my health impacts my family just as much or more than it does me.
16. Something I never thought I could do with my illness that I did was to be open about what is going on and not try to hide everything.
17. The commercials about my illness do not exist...
18. Something I really miss doing since I was diagnosed is RUNNING!!! (not really since the diagnosis but since my symptoms have been progressing)
19. It was really hard to have to give up feeling like I was in control of my health and life.
20. A new hobby I have taken up since my diagnosis is painting! (Okay, full disclosure, paint-by-number...but for my non-artistic family, that's a huge step!)
21. If I could have one day of feeling normal again I would go running, find a cool place to go hiking with Nick and Bonk, eat lots of fruits, vegetables, and tortilla chips, walk all around a really cool zoo, and stay up late to stargaze!
22. My illness has taught me that I don't have to fit any sort of stereotype of what I "should" be, I just have to be confident in who I am in Christ.
23. Want to know a secret? One thing that people say that gets under my skin is "God never gives us more than we can handle." FALSE! If you haven't read my blog post about how I really feel about this statement, check it out here.
24. But I love it when people send me texts at random times with encouragement or funny photos of alpacas or platypuses (platypi?) or hedgehogs or armadillos or any other cute animals that can be thought of! (If you need my phone number, let me know =P)
25. My favorite motto, scripture, quote, etc. that gets me through tough times is Isaiah 40:31, "Those who wait upon the Lord shall renew their strength. He will raise them on wings like eagles. They will walk and not grow weary; they will walk and not faint." AND "On my roughest days when I feel like I want to give up, I just remind myself that my track record for getting through bad time is 100%."
26. When someone is diagnosed, I'd like to tell them that there is life after or during a chronic illness diagnosis. Smiling and laughter and JOY are not dependent on your circumstances and neither is God's love, purpose, or trustworthiness.
27. Something that has surprised me about living with an illness is that life is not always about being strong enough but sometimes about knowing what strength through weakness looks like.
28. The nicest thing someone did for me when I wasn't feeling well was MARRY ME! Shout out to Nick! But seriously, Nick is so far beyond anything I could have ever hoped for in a husband, and I am thankful every day for him and the sacrifices he makes for me. He knew what he was getting into, but life has still become so much more than either of us could have imagined. He takes everything in stride, and nothing can make me smile faster or laugh quicker than spending time with him!
29. I'm involved with Invisible Illness Week because like I've said before, (and at the top of this blog) there's no research without funding and no funding without awareness, so I'm doing what I can to raise awareness for mast cell and other rare diseases.
30. The fact that you read this list makes me feel thankful! I know that this may just be another blog on your list or another facebook link that you clicked, but thank you for that. I can't raise awareness without an audience, so my future and the future of everyone with mast cell and rare diseases is dependent on those of you who listen to us and come alongside us. So thank you for reading this post, but please, go one step further and SHARE! On facebook, with friends and family, or with someone you know who may be going through something similar. I'm not alone in this struggle, so please help me raise awareness for everyone dealing with an invisible illness!

Thursday, September 10, 2015

Sometimes You Just Have to Laugh

You know that feeling when everything is just such a mess, you have nothing left to do but laugh because life is just that crazy??

Yep, we've definitely reached that point! Let me share one moment of frustration-induced-laughter that we had this past weekend.

I'll start by saying that Nick and I are currently debating whether our ER count should return to 0 or not...please chime in with your opinions!!

Anyway, after a rough week last week, I finally woke up Sunday morning feeling halfway decent. It was a really nice break. I made it in to church and met Nick after he finished serving in the Grid (our children's ministry) during first service.

I still felt pretty good after service ended, but the walk from the Big Room to the back door wore me out. I was pretty out of breath and kinda dizzy, so I paused right outside the door to try to catch my breath. Nick offered me a piggy back ride to our cars (in the far corner of the parking lot) and I gladly accepted!

When we reached the cars, Nick started to put me down, and that's where things got interesting. I felt Herman (my feeding tube) start to snag on something as Nick was lowering me to the ground. I let go of Nick's shoulders so I could make sure Herman wasn't caught, and in that brief moment started to fall backwards off Nick...

Nick felt me falling and did what anyone would do, tried to hold me tighter to prevent the fall...except I had already let go of his I kept falling backwards...until the asphalt parking lot tried to cushion my fall...

I instinctively put out my arm to catch my fall, and it worked! I smashed my left elbow and forearm into the pavement instead of my head...small blessings, right?? =P

My body being the way it is, often overreacts to unexpected stimuli, so in this case, instead of just having major pain in my arm, my entire body started shaking uncontrollably and I became extremely short of breath and dizzy. Pain can be a very potent mast cell stimulus, and that's what I was experiencing right then.

We were able to get my body slightly calmed down so we were able to assess the arm situation and decide what to do. Initially I just wanted to go home and wait it out and see how things were in the morning. Despite the amount of time we seem to spend in the ER, it is NOT one of my favorite places to be, so I wanted to avoid yet another "date."

However, once we got in the car, we decided to just get it checked out. My pain was radiating throughout my arm and I was having trouble moving my fingers, wrist, and elbow. Hey, there are SOME perks to having met my deductible back in February!

The laughter moment came in the car as we were driving to the ER. I was half crying in frustration, half laughing because SERIOUSLY?!?! We can't catch a break!! (Or did I?? Haha, pun intended! Keep reading to find out...) With everything we have going on, did this HAVE to happen?? I just started to feel better again, was having a halfway decent day, was able to get out of the house, go to church, etc. And then we were on our way to the ER just like old times...REALLY?!?!

But that's life! Things happen, there are days that just can't be put into words, sometimes there is nothing to do but laugh. And that's what we did!

Life is hard right now. We've had more than our share of tears and frustration and fear and pain and helpless moments. But at the same time, we have experienced God's grace in more ways than ever, we've learned to trust Him when we can't do anything else, we have grown closer as a couple through these rough moments, we've laughed at absolutely nothing, and we've watched a good many Indians games from the ER!

We all experience rough days, weeks, months, years, whatever it may be. And yes they are hard, but instead of just praying for it to end, we're praying to enjoy the moments. Life doesn't have to be bad just because it's hard. In the midst of this season of our lives, we've had fun, smiled, and laughed. Maybe it's not the same as if nothing was going on, but I can tell you that we certainly enjoy the good moments more because we do have hard times. So don't just wait for the rough seasons to pass, embrace that time as life given from God just as much as the good times. Find moments to smile and laugh no matter what your going through. God sees you and loves you, and that's reason enough to smile (even if it's through tears) any day!!

So, participation time, here's the ultimate question...

Do we have to reset our ER counter??

On the one hand, it wasn't an MCAS issue, so maybe it doesn't count?? It was just a routine "normal" person issue, not something related to me, so my thought is that we can keep going with our current 2+ weeks.

BUT on the other hand, we did have to make a trip to the ER. Our counter doesn't represent days I'm symptomatic (good thing, too, cause that counter wouldn't make it very far =P), but when we end up in the ER. Based on that, we did end up in the maybe we do need to reset.

Chime in with your thoughts on whether or not the Bokatopia ER counter needs to be reset!

UPDATE: Today is now Thursday, and I am happy to report that my arm is well on its way to healing. X-rays showed no breaks (yay!!) and it has been improving every day.

Wednesday, September 2, 2015

Joy and Contentment

"You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful."
James 5:11b

I read this verse recently, and it got me thinking. Of all the stories in the Bible and all the people who believed in God, why would James choose Job as the example of "the purpose of the Lord" and how God is "compassionate and merciful?"

For anyone not familiar with the story of Job, it is a story of suffering and pain. Job was a man who loved God, and because of that, Satan challenged that if Job had nothing, he would curse God. Job lost his family, his wealth, his health, EVERYTHING, yet he did not curse God. Instead he defended God to his friends and wife who told him to turn his back on God.

Good for Job not cursing God, but somehow losing everything just doesn't seem like compassion and mercy...

Yet THIS is the story James chose.

Lately God has been teaching me joy and contentment. I've always been taught that joy is not dependent on our circumstances, but never really been in a position to truly experience it. It's one thing to have been taught and gained head knowledge about something and another completely to have personal experience and truly BELIEVE it.

This season of life has been one of the toughest I have experienced. I've been discouraged, frustrated, scared, anxious, and helpless. I've prayed without answers and felt completely alone. Yet the past few weeks have also shown me what true joy can be like.

Joy is seeing the positive in each day no matter how difficult. Joy is finding time to smile in the midst of pain knowing that it, just like the good, is only temporary. Joy is being grateful for the time Nick and I have together even if it's spent on the cough or on the road to the ER. Joy is making time to laugh and be thankful for each day that we are granted. Joy is seeing the Son break through the clouds of life and even if the rain doesn't stop gives us a glimpse of hope.

Contentment is similar. It comes in knowing that regardless of what is going on in our lives, God is in control. It is in remembering that we were not created for this world, but for eternal life. We can find contentment no matter our circumstances when we are reminded that regardless of the trials of this life, God has promised us healing and life.

That's what Job understood. In the midst of his suffering, Job probably wasn't thinking that God is merciful and compassionate, but He did trust in the fact that God is in control regardless of what seems to be going on around us. God's compassion and mercy was shown to Job when he did not allow Satan to kill Job, but instead proved Job faithful then blessed him even more abundantly than before. In some ways, God is compassionate and merciful to us when He allows us to experience incredible heartache and pain. Because without troubles, we can become reliant on our own abilities and strengths. By giving us challenges we cannot endure without His help, God reminds us that we are desperately in need of Him.

Finding joy and contentment doesn't mean that I am happy all the time or never have moments when I am upset or scared or in pain or feeling the effects of living in a fallen world. It just means that I know that my life is not just about me and that God is in control. It means that I am learning to place my hope in things that will never fade and not rely on what I am capable of on my own. Plus, finding a reason to smile and laugh every day is just a good way to live anyway!

Monday, August 24, 2015

Who's the Expert Here?

I had a realization this past week when I had an appointment with yet another new doctor. If you've been following my blog for any amount of time, you may have picked up on my *slight* dislike of new doctors...yeah...NOT A FAN.

Ask anyone in my family, and they'll tell you that I definitely prepare myself for new patient appointments by going on the defensive and being prepared to fight for myself. I've had doctors tell me there was nothing wrong with me, everything was just in my head, or even to come back when I couldn't walk and maybe then he would have an interest in my case. It's definitely been a journey to get to where I am now with the doctors that I have. I am so thankful to have the doctors that I do, but I still get nervous when I have to see a new one.

Last Thursday I had a first appointment with a local allergist/immunologist. This summer has been rough and right now my health is very unpredictable and my mast cells are just *slightly* out of control. My PCP gave me the name of a local allergist for me to see who he felt like would have more experience with some of the more unusual treatment options recommended by my specialist and is more familiar with allergy-type reactions in general. Despite knowing that my PCP knew this doctor personally and was recommending him did not ease my nervousness that I had at the first appointment.

But I learned what I think is an extremely valuable lesson at this appointment.

I know that I'm an unusual case, but I've never really thought about what that looks like from a doctor's perspective. I walk into a new office with a 4-inch thick binder of my medical records, a feeding tube and my backpack with formula, and my defenses up. The doctor has never met me before, and all he sees is a patient who has multiple doctors around the country, a long list of "weird' issues, specific treatment requirements, and has a defensive wall built up. All of a sudden, I don't sound like the kind of patient that a doctor wants to see...

And that's why my appointment with my new allergist did not start off so well last week. We both had our guard up, and it was obvious neither of us were completely comfortable during at the beginning of the appointment. I felt like he didn't believe me and was barely listening as he was asking questions and taking notes. It seemed like he was just going through the motions and trying to check items off his list so he could get on to his next patient.

I started to get really frustrated and discouraged, but instead of just shutting down, I instead tried to turn the appointment around. While I didn't use these exact words in the appointment, this is basically what I said to my doctor. And this is where the tension in the room eased and we realized that we both had something to add to the appointment.

"I know that you are the medical expert, and I respect that. I wouldn't be in your office if I didn't think you had that training and the experience to help me. But I'm the expert on me. I'm not going to pretend I understand everything about this because I don't, that's why I'm here. All I'm asking is that you would just listen to what I know about me."

Again, didn't use those exact words, but you get the gist of it. And I think that is the first time I've said something like that to a doctor. I can't say that was *the* moment the tension lifted, but it certainly helped. That appointment ended a complete 180 from how it started. And I am so thankful for that!

I desperately need a local allergist on board in case I'm admitted anywhere and just to help me manage my currently-out-of-control symptoms. The appointment ended with my new allergist saying he was going to contact my specialist in MN and talk with some of his colleagues at the Cleveland Clinic about treatment options, and he would get back in touch with me after he did that. I would call that a successful appointment!

And it happened because we realized that we both bring a different perspective and were willing to meet in the middle. He's the medical expert, and I'm the expert on me.

As a rare disease patient, I understand that doctors may not have heard about MCAS or know anything about it. To be honest, that scares me at times. I carry my medical information with me at all times. I wear a medical bracelet, my backpack is labeled with a medical symbol, my medical information and Epipens are in well-labeled bags, and I still wonder if that is enough. I have severe food allergies and multiple drug allergies. My body does not react normally to some "routine" ER treatments for some of my symptoms. While I do my best to be prepared, all it takes is one doctor not willing to follow my protocol for me to be in danger. There have been times when I've been in the hospital and it has been like playing Russian Roulette because it only takes one doctor not listening to seriously endanger my health.

I'm not trying to pretend that I know more than the doctors. I know they do have a lot of knowledge and have gone through school and spent years working to be where they are. All I'm asking is for them to recognize that for as long as they've been in school studying, I've been living with my condition and been learning about myself. Treating any condition, but especially rare diseases and chronic illnesses needs to be a collaboration.

So I'll end with this:

For rare disease/chronic illness patients:

Give doctors the benefit of the doubt. I know it's easier said than done, but try to give them a chance. They are the medical experts. Respect them for that. Acknowledge that you know they have a lot to offer. Let's be honest, we wouldn't be going to doctors if we didn't absolutely HAVE to, so just remind them that we need them. And be open. They may present something you had previously brushed aside or something completely new. At least be willing to discuss it with them. We want them to listen when we ask for something, so let's give them the same respect.

For doctors/nurses/etc. treating us:

THANK YOU! We need you. We know you are the medical experts, but we just need you to understand that we are experts too, just of ourselves. You see us in the ER or every few months in your office, we live with ourselves 24/7. When we tell you something does or doesn't work, please believe us, even if it sounds crazy. We don't want to be scared to go to the hospital because we are worried that we will not be treated properly and are afraid for our health. All we are asking is for you to be willing to listen to us and remember that we are the experts on us.