Tuesday, June 23, 2015

And We're Back!

Two steps forward, one step back...although it sometimes feels like a tiny step over the start line and turning and running backwards in the opposite direction...

But that's still a step over the start line!

My appointment last week with my mast cell specialist went well. While my GI doctor and PCP are great about following Dr. Afrin's protocols and corresponding with him as needed, it was still nice to be able to sit down with him in person. It was nice to be able to ask questions and hear about current research and new treatment possibilities that may be available in the near future. As you know, since we got the diagnosis, we've been trialing medications to hopefully find one that will best manage my symptoms. I started a new one about a week before our cruise to Alaska. Since then, we've noticed some small (or big depending on how you look at it!) changes in my daily functioning.

While the improvements are small, it's definitely a step in a positive direction. Dr. Afrin was very encouraged at the improvements I've seen even on the lowest dose of the medication. One of the biggest changes is that I'm EATING!!!

Okay, I'm not ready for Thanksgiving yet (good thing it's still 5 months away!) but we are making progress. I was able to eat a few scrambled eggs on the cruise along with a bit of fruit. I'm still eating a bit of scrambled eggs and fruit and have been able to add in some soft foods, like mashed sweet potatoes. Dr. Afrin thought even that small improvement was a good indication that this latest medication may be a good fit for me and we may be dealing with dose adjustments for a bit.

We are thankful.

Like I said, still just a small step. But at least it's something. Unfortunately, last night and today have been rough. While insomnia and fevers are not usually on my list of symptoms, my body has decided to switch things up a bit...never a dull day in Bokatopia!

As always, thank you for your prayers. It has been just over 4 weeks since I have been in the ER which is a new record! Please be praying for that streak to continue! Also, Nick and I have a couple fun trips planned in the coming weeks, a fun change from our typical "date nights" and doctor travels. Please be praying for health and safe travels while we are hoping to have a weekend away and some time with friends. 

Wednesday, June 10, 2015

What's going on in Bokatopia??

I know you're all wondering (other than a fantastic cruise to Alaska) what's been going on in the wonderful world of Bokatopia? (credit for the name goes to our marriage mentors Lindsay and Joe!)

I've held off being specific about what has been going on health-wise for a couple reason. First, I didn't want to sound like a broken record. I've had some good moments and some bad ones. Like I said...broken record =P But seriously, things are going...just going. I've had some days where I feel good, and I do feel like overall things are improving. I started a new medication a week or so before we left on the cruise, and I may be seeing some benefit from that. It's still a bit soon to tell, but the cruise was great, and I have had more ups than downs lately. Although the downs that I've had have been pretty rough. I think it's only been 1 ER trip in the past month, though, which is great! Going on 2 weeks with no "date nights" so here's to going on three!

The second reason I've held off a health update is because sometimes it just gets hard to live with stuff every day and then re-live it again by writing blog posts. Since school is out for the summer, I'm doing some work with my mom on her travel business and working on my dissertation. I spend a lot of time alone. Just me, Bonk, and my mast cells...The days I feel good are productive and I'm able to run errands and feel somewhat "normal." The days I don't feel well I spend in the bathroom or the back bedroom and barely make it out of the apartment to take Bonk for walks. Last week I didn't leave our apartment for 3 days straight because I was feeling so sick. It's hard to be alone with my thoughts and feeling sick day after day and sometimes I just don't want to think about it again to re-tell it on here.

So that's what's been going on, and here's a bit of what's coming up!

Next week my mom and I will be going on a ROADTRIP!!! Yay...I think we calculated it out that my mom will be traveling over 2200 miles from Monday-Saturday since she has to drive to Ohio first...so excited...Why might we be taking on such a crazy endeavor you might ask?? I wish I had some exciting news of a wonderful new travel destination that we were going to check out (although for any of your travel needs, check out www.TrippinwithJamie.com), but I don't. 

We are going for my 6 month follow-up with Dr. Afrin, my mast cell specialist, in Minnesota. I'm both glad this appointment is here and also a bit disappointed. Obviously I've had a rough year, so going back out to ask some questions get answers from him in person instead of communicating via email and phone hopefully will be beneficial. The disappointment comes because I was hoping to be in a better spot now than I am. When we got the diagnosis in January, I knew it wouldn't be a quick fix, but I also think I expected that by the time June rolled around, it would be a "healthy check-up" instead of a "sick visit" when we went back out to Minnesota. 

We are leaving Ohio on Tuesday, and my appointment is Wednesday afternoon. After taking a detour to visit my aunt in Wisconsin and friend outside Chicago, we will be back on Friday. Please keep our travels in your prayers that we will have a safe trip out and back. Also, please be praying that Dr. Afrin will be able to cast some light on some of my ongoing issues and answer the questions that we are really hoping to have answered. 

Also please be praying that Nick and Bonk don't suffer too much separation anxiety while I'm gone. If only I could leave my mast cells somewhere and drive away...

Taking Chronic Illness on Vacation

As many of you saw, Nick and I got back from a cruise to Alaska a couple weeks ago. Like I covered pretty thoroughly in my previous post, we had a great time! Before I finally admit the trip is over and rejoin normal life, I wanted to share something that I learned about dealing with my medical issues during the trip. It was unexpected and initially disappointing, but ended up being something that really made the trip special.

I had been looking forward to the cruise because I was ready to GET AWAY. If you've been following this blog, you know it had been a very long school year. I had been hospitalized twice during the fall semester and missed 2 other weeks for out of state travel to specialist appointments. Then in the spring, my first admission was less than 2 weeks into the semester, and it didn't end there...numerous ER trips, an NJ tube, and eventually surgery to place a PEG-J tube filled my calendar when it should have been filled with meetings with students, research projects and scheduling my dissertation proposal.

But the semester finally ended! We had been planning the cruise to Alaska for almost a year to celebrate my brother's graduation from college. Nick and I were looking forward to a week away, and taking a break from from life. Then, a couple weeks before we left, my mom posed a question to me. I don't remember the exact wording, but it was something along the lines of:

"Are you ready to go on the cruise with MCAS?"

At first I was confused and not sure what she meant. Of course I was ready. I had doctor's notes stating I needed to carry medically necessary liquids through airport security and onto the ship. I had made list after list of supplies to make sure I didn't forget anything essential. I had (what we hoped would be) more than enough Epi-pens and emergency medications to manage any reactions. We had contacted the ship ahead of time to make sure they were capable of handling my extremely limited diet and that I had an extension cord in our cabin to charge my feeding pump. All the "normal" necessities like clothes, toiletries, and of course cameras were ready to be packed. Why wouldn't I be ready?

Like any daughter does on *very rare* occasions, I flippantly answered her and moved on. But I did spend time thinking about what she asked me. Anyone who knows my mom knows she doesn't ask idle questions. =) There is always something she is trying to get at when she asks a question, but this time I didn't figure it out until I got to the airport. We were waiting at the gate for our first flight when what she asked me finally made sense.

After an anaphylactic reaction on a plane 2 years earlier, my doctor decided I should pre-medicate prior to flying to hopefully prevent any reactions before they start. At this point, almost all my medications are liquids so I can put them down my J tube, which at home is no big deal. However, in the airport, it was much more complicated.

As I stood in the bathroom trying to balance my syringes and cup of water on the edge of the sink while keeping the end of my feeding tube from touching anything and getting contaminated with who knows what kind of bacteria and germs, I started getting frustrated. I was supposed to be going on vacation. Things were supposed to be relaxing and fun, and I was waiting to feel like I had gotten away from the craziness that was our life. I wasn't supposed to have to deal with my J tube medications in an airport bathroom while people stared as they wash their hands.

And that's when I realized what my mom meant. She wasn't asking if I was physically packed and ready to go, she was asking if I was ready to take my chronic illness with me on the trip. It wasn't that I actually believed I would all of a sudden be healthy just because I was going on vacation, but there was a part of me that was maybe subconsciously expecting things to be easier to deal with since I was on vacation. That moment in the airport bathroom, I think it hit me. We may get breaks from every day schedules and routines, but for those of us dealing with a chronic illness (or any special need), there's no vacation from being sick.

It's like planning a trip to Italy and ending up in Holland instead. (Read the whole "Welcome to Holland" story here). You step off the plane and feel out of sorts and upset that your trip is not what you had planned. But if you take a minute to look around, you realize that while Holland might not have the canals of Venice, the Sistine Chapel, or the Leaning Tower of Pisa, it has a beauty of its own in the canals in Amsterdam, the countryside windmills, and the colorful tulips. Holland might not be as fast paced and flashy as Italy, but there is still beauty in slowing down and taking in the sights.

And that's what I learned on this cruise to Alaska. Growing up our family vacations were always fast paced and busy. This trip was different. I needed more down time for me to recover from one activity before moving on to the next. After a day of kayaking, I needed the evening to relax instead of going out again after dinner. After hiking a technical trail in the sun, I spent the next day just sitting out on the balcony watching the mountains and glaciers in Glacier Bay. Instead of staying up late each night to see the shows, I made sure to get a full nights sleep so I could enjoy activities the next day.

Was this trip different than what it might have been had I not been sick? Yes. Was this trip fantastic in its own right and did I have a great time? Absolutely! I would even say that being forced to slow down by my chronic illness gave me and my husband the chance to just enjoy being on vacation and not feeling like we were rushing around to get to one activity after another. It might not have been the Italy that I was used to and maybe was expecting, but I found Holland to be just as incredible and a beauty all on its own.