Tuesday, May 30, 2017

Moving with a Rare Disease

Since we are now moved in to our new house (?!?!?!), I thought I would share a bit of what it was like to be house hunting with mast cell disease and some of the additional considerations we had to make as well as some of the extra moving-related checklist items that come up when moving to a new area with a rare disease. If you missed my previous post about the relocation of Bokatopia, you can read about it here.

The first thing I should mention is that I did not actually go in most of the houses we looked at. Out of the dozens of homes we saw, I think I actually entered 3 houses. And when I did enter, I did it with my mask on. We chose to do things this way mostly because I am incredibly sensitive to scents. During the house hunting process, possible scents include paint/stain from updates done to the home, mold if that is an issue, air freshener is often used when the home is still being lived in to mask any potential smells, and/or candles again used to make the house smell fresh. All of which have the potential to cause a major reaction. If Nick went through the house and could immediately tell it wasn't the right home for us, there was no need for me to risk being exposed to a trigger. When we found a house we thought was a good possibility, I would go in with my mask on so I could see it AND so if I did start reacting, we would know before we actually bought the house. At some point we had to risk a reaction to see whether or not I could actually live in the house! Thankfully, we were able to successfully complete the house hunting process with no reactions!

As we began our search, there were a few things we specifically looked for in a house because of my mast cell disease. The most important thing was to have full living space on the first level. We looked at many ranch homes because of this need. Because of my passing out and balance/coordination issues, stairs can be a hazard on bad days (and some good days too...=P). We needed a house that had a bedroom, full bathroom, kitchen, living space, and exterior door on the main level. Everything else could be upstairs, basement, or same level but we needed me to be able to stay on a single level if needed. Another must-have for us was a fenced yard for the dogs that could be accessed from the main level. On rough days, I am not always able to get around easily. Having a way to let the dogs out even when I can't walk them was a must. While we initially were focusing mostly on ranch homes like I said earlier, we ended up with a colonial that had a bedroom addition added to the first floor which works great for our needs. There is a yard that is partially fenced that we will be finishing to give Bonk and Leni space to run around like the crazy dogs they are.

I jokingly mentioned in the first post that our search criteria was 10 minutes to Nick's work, church, and the ER. While in passing it's fun to laugh about, that WAS a factor in our decision process. In addition, we also knew there were certain ERs and hospital systems that we needed to avoid even if they were within our 10 minute radius for Nick's work and church. We purposefully avoided a few areas that might have otherwise been fine, except we knew the EMT's first choice of ER (which would be the default if I was unable to communicate or unstable medically) was one that was not able to handle my mast cell disease. Thankfully, we were able to find a house not only within 7 minutes of an ER in the right hospital system, but it happens to be one that we have been to many times (and is one of our favorites!!). They know me (and Leni), are familiar with my mast cell disease, and know I have specific protocols. This ER also admits to our preferred hospital where the majority of my doctors have privleges and is less than 5 minutes from Nick's work for when my mast cells decide not to play nice during the workday.

Once we moved passed the hunting phase and have actually been preparing to move, there are a few things I have on my to-do list for just before moving or immediately after. The most important of these is visiting the local EMS. Any time I move to a new area, I make sure I know where the closest 2 EMS station are located. The reason I look for the closest 2 stations is because if something were to happen on a day when all the teams have already been dispatched from the closest location, they often call the next closest for assistance. I try to schedule a time to speak with whoever is in charge of the squads so I can bring them up to speed on my mast cell disease and other relevant info. I don't focus too much on the specifics of my treatment protocols, because you never know who is on call, what they'll remember weeks later, etc. What I do focus on is making sure they are aware that I have a rare disease. Usually they can flag an address in their system. For us, we make sure they know the code to the side door so they can come in if I'm unable to get to the door. I make sure they are aware I have all my medical information and protocols hanging next to the door. I bring them up to speed on service dog laws if they are not familiar and request they bring Leni along in the ambulance if at all possible. Thankfully it won't be an issue here, but in other places I've lived I have made sure they know my preferred hospital system and which ER I want to be taken to. Details like this (which are also spelled out on the medical information sheets located by the door) can be incredibly important to discuss ahead of time because in the moment, especially if I'm unable to communicate, things get missed.

I also speak with the power/utilities company and water if that is separate. Because I rely on a feeding tube for the majority of my nutrition, do IV fluids by a pump at home to maintain my electrolytes and hydration, and have medications that need a temperature controlled environment, power outages can be quite serious. A few hours without power is not a huge issue, but if it is a widespread outage, sometimes restoration can take days. That is when things can be more of an issue. All power/utility companies have something of a priority list for when widespread outages occur. This list typically includes people who rely on medical devices that need charged or actually plugged in to be used. The neighborhoods and areas where people with this type of equipment live can be prioritized to help ensure they are not without medical equipment for too long. Again, for us it's not an immediate crisis if the power were to go out, but with an extended outage things could become an issue. Worst case scenario, we stay with my in-laws for a few days, but often by simply alerting the local power/utility company, this can be a relatively simple issue to resolve.

Another miscellaneous thing that I have to do any time we move to a new house is re-train Leni. No, she doesn't immediately forget all her training just because we moved, but she does get conditioned to where my phone usually sits, where I keep my EpiPens, how to open the fridge, etc. When we move, all her familiarity with those tasks is gone. My phone will have a new spot it is most likely to be in, my EpiPens will find a new home, the fridge is a different style for her to open...things like this that are important tasks will need some proofing and possible re-training to keep her sharp and quick in her tasking.

Then of course, there are the small, but oh-so-important things like making sure I have a clear path from the bed to the bathroom in the event of cranky mast cells in the middle of the night (not that this EVER happens...=P). Making sure we have space allocated in the refrigerator for my IV fluids and Leni-accessible water bottles. Finding an outdoor water-tight bin for medical deliveries in the rain to protect my supplies. Figuring out what storage arrangement will work in the new house for all my medical supplies to keep them easily accessible when I need them but not a mess in the middle of everything. There's always something!

We are very excited (and a bit overwhelmed =P) to be moved! Thank you for keeping us in your prayers these past few weeks! We are excited for this big step in our "adulting" abilities and next season of life for Nick and me.

Thursday, May 18, 2017

And a Big THANK YOU Goes to...

You know those moments when someone goes above and beyond to make you feel comfortable or welcome? And you just want to thank them but somehow words can't possibly communicate how appreciative you are for what they said or did for you? Well, I'm going to attempt to put one of these moments into words...but I hope that regardless of how well my words communicate one of these moments, that my gratitude truly comes across.

One of the things about living with mast cell disease is that every time I leave the house, I risk being exposed to a trigger that could causes a major reaction. (Now technically I can still go into anaphylaxis just sitting at home, but not focusing on that right now =P) Sometimes we decide to risk that with some careful consideration, other days it's not an option. There are some places that are "safer" than others, and it is always nice to know that we have those and be able to relax at least a bit.

I'm going to share one of those places with you and hope that you will help me truly thank the owner by frequenting this incredible local business. And since many of you know and love this place already, that shouldn't be too difficult =)

Corner Cup Coffeehouse in Stow...THANK YOU for how welcoming and accommodating you have been for Leni and me since we first walked in almost a year ago I think. Heather does not know I am writing this post, but she truly has gone above and beyond in not just accommodating my allergies but making me feel welcomed. And not just Heather, but her entire staff which is really even more reflection back on how Heather is setting the environment for everyone working at Corner Cup.

The first day I went to Corner Cup, I ordered a drink made with almond milk, only to have to ask it to be remade because it was mixed with a spoon that had just been used in a milk based drink. Not only was my drink remade quickly (and with a smile), but they asked about my allergies so they would be aware in the future. I appreciated their questions, but figured I would have to repeat myself again every time I ordered a drink. Far from that being the case, the next time I entered Corner Cup, even with different staff behind the counter, they knew what to do to prevent cross contamination. Granted, having a service dog makes me a bit easier to remember, but this was still beyond the job description of a coffee shop barista.

Months later, I walked in just after the pumpkin spice latte had returned for the fall season. That used to be one of my favorite drinks before I developed all my allergies, and I thought I would at least ask if the seasonal syrup was safe. The staff not only knew what I was asking immediately, but they had already read the bottles and had an answer for me. One of the baristas had made drinks for me many times and said she read the bottle when it had arrived because she was curious to know if there was milk in the flavoring. While I was disappointed to find out the syrup was not safe, I was very impressed with the staff again going above and beyond. These little things seem so insignificant to many people, but to someone with severe allergies and extreme dietary limitations, these minor details make a huge impact.

Just this past week, I had another experience at Corner Cup that prompted this post. My mom was in town, and we had decided to make a stop to get drinks before running some errands. Not long after sitting down, my mom heard a couple other customers talking about essential oils. If you remember, a few months ago, I went into anaphylaxis in a medical office building thanks to some diffused oils (you can read that post here). Heather had read my blog post and shared that made her aware of how airborne fumes can impact not just me, but many people with varying degrees of sensitivity. Not long after, a lady walked in with a bag of essential oils prepared to do a demo for the ladies we had heard talking about them. Unfortunately, this meant that my mom and I had to leave immediately as my throat began itching, I was developing hives, and my lips were tingling.

Leni and I got to the car so I could take my IV meds, but my mom hung back to speak with Heather and the lady with the oils for a few minutes. Now, please understand that I was in no way upset at all. I know that whenever I go out in public, I risk being exposed to a major trigger and I am prepared for those occurrences. It was a bummer that we had to leave in a hurry, but that's just my reality right now. My mom made sure both Corner Cup and the ladies with the oils understood that we were not upset but that we could not stay if they were going to do an essential oils demo. We left to run our errands and didn't give it another thought. At least not until the next evening...

The next day, I received a message from Heather that prompted this post to share how much I appreciated both her message and efforts to keep Corner Cup a safe place for me to visit.

Heather's efforts to find a way to allow people to meet at her coffee shop to discuss and trial essential oils while still trying to keep it a safe place for me to visit goes above and beyond anything a small business owner should be doing. In her message, she explained her new protocol for Corner Cup regarding essential oils and how she is going to manage these events in the future. She took the time to apologize for us having to leave so quickly the day before (which was not at all something she needed to apologize for) and shared how she was going to ensure there were no impromptu essential oils meet ups but planned in advance to allow people (mostly me) who were sensitive to avoid those times.

Remember that I am ONE CUSTOMER. Now I know there may be other people who are sensitive to essential oils or have allergies, but still. Heather and her staff have gone above and beyond to make me feel welcomed and safe at Corner Cup which, again, is a testament to the quality of the staff who work there. A few days later, Nick and I stopped by to pick up some drinks on our way to his parents. I stayed in the car and Nick went in to order. Even without me in the store, they recognized Nick and made sure to make my drink in a way that avoided any possible cross contamination.

If I haven't said it enough in this post, I'll say it again. THANK YOU Heather and the entire Corner Cup staff. You have truly gone above and beyond, and while it might not seem like much to you, it means a lot to me and my family. Thank you.

Leni says THANK YOU to everyone at Corner Cup!

Monday, May 8, 2017

Bokatopia is Relocating!!!

I'm going to take a break from regular scheduled programming to share some super exciting news. In less than a month, Bokatopia will be relocating!

Sorry VA friends, not going that far! But we are preparing to move in less than a month! Nick and I have been married about 2.5 years. We initially lived in an apartment in Tallmadge. We really enjoyed it and loved the town, but after a little over a year it became hard to afford our rent due to rapidly increasing medical expenses thanks to aging off my parent's health insurance policy when I turned 26. In Feb 2016 we moved in with friends who have very graciously adopted us as their 4th and 5th children and allowed us to live in their upstairs.

We have loved living with our friends, but as my health has continued to be a challenge, we have felt the need to be close to Nick's work, church, and the doctors I see most often. A few months ago we began house hunting with my parents with the intention of finding a house that Nick and I can live in that also has space for parents when they come out for extended periods of time with their dogs. Our goal was within 10-15 minutes of Nick's work, the ER (yes, this was important for us =P), and church. After weeks of searching and dealing with the current, crazy housing market, we put in an offer on a house in Cuyahoga Falls that was accepted. The home inspection was completed a few weeks ago, and we are starting to prepare for moving!

We are very excited about this next stage in our married life! Nick is looking forward to having a much shorter commute, I'm looking forward to having all our main living space on a single level, the dogs are excited to have a yard of their own, my parents are looking forward to being able to come out easier with their dogs to visit, Nick's parents are glad we'll be closer...it's a win all around (except for our adoptive parents who we will miss seeing every day...)!

We are also very much looking forward to being close to church so on days I'm unable to drive and Nick is serving, I still have the option of coming because we are close enough for Nick to swing home to pick me up in between services. We have missed being as involved with our church family these past few months and hope that being so much closer will make it much easier to attend events even if we can't always stay the entire time.

Even in just the short time we have been married, Nick and I have been extraordinarily blessed by friends and family who have stepped up to help us out as my mast cells have been doing their best to cause as much craziness as possible in my body. God has not failed to provide for us even in times when we truly did not see how things would work out. We can both say that our married life is not anything we could have ever imagined. But we can also say that it has been and continues to be an incredible adventure that we wouldn't want to be doing with anyone else.

And now we are on to our next adventure! Please keep us in your prayers these next few weeks. Life does not stop just because we are preparing to move...I still have multiple appointments and Xolair and testing. Nick is still working full time, and we're both managing my mast cell disease on the side and in the most inconvenient moments when my body decides not to play nice...

Please keep us in your prayers these next few weeks! Moving is stressful at the best of times, and we are working around my not-so-cooperative mast cells. I am unable to be in the house while Nick is finishing up some of the small things that need taken care of before we move, I'm not able to help with the actual moving process very much, and anything that is out of our routine has the potential to trigger reactions for me. We are excited for the long-term benefits this house will provide for us, but initially it will be a challenge. Please pray that we are able to get done all the small projects easily without any complications. Pray for a smooth moving day and that things go well and we have good weather. And please pray I don't lose any essential medications in the moving process...always a good thing to pray for =)

Thank you for always being on this crazy journey of life with us through prayer and support. We are excited for this next season of life, and we are glad to share that with you!

Thursday, May 4, 2017

When Did May Happen???

Um, did someone see April? And I'm not talking about the giraffe...I think I missed it...I cannot believe it is already May...when did that happen???

May is always a busy month for our family. Mostly because my mom gets some hard core celebrations going on and the rest of us go bankrupt. Not only does my mom get to celebrate Mother's Day this month, but it also happens to be her birthday month AND anniversary month. While most years I think I can safely say I am much more prepared going into this month of motherly celebration than my brother, I may have to admit that this year he will walk away with the favorite child of the year award...I won't go into much more detail since my mom is usually the first person to read these blog posts, but I will say that even though I'm not usually one to concede defeat, I do know when I've lost a fair fight. And I suppose it will be good for Devon to get at least one year of being the favorite =P

Aside from the favorite child of the year competition and celebrating my mom, I've got some GI testing, appointments, and scheduling coming up in the next few weeks. Plus some exciting news that I will share in a later post, so stay tuned for a major Bokatopia update!

I am *hopefully* getting my feeding tubes changed sometime next week. This is not at all related to the issues I had with Sherman (J tube) a couple of weeks ago, but just normal feeding tube maintenance. This will be my first tube change since having my GJ tube split into separate G and J tubes. Despite the issue with Sherman trying to escape my intestines, I really have preferred having the 2 tubes vs. the 2-in-1 tube. My G tube drains more easily since there is not a smaller tube running down the inside and my J tube can't kink anymore, both have been incredible benefits. Actually, the best part of having the separate tubes will be realized very soon when I get them changed. Because of my anatomy, when I had the GJ tube, I had to have it changed during an endoscopy so they could get the J extension into my intestines and stitch it into place. Since me and anesthesia don't get along so well, these procedures were always a source of stress both for me being nervous for the procedure and anaphylaxis stress on my body from the medications. Having the separate tubes means tube changes can be done MUCH more easily and without having to use any sedation or anesthesia!

Ironically, despite no longer needing to be put under for tube changes, I will need anesthesia next week for a colonoscopy...so not fully escaping it yet...but hopefully this will be the last time for a while! (I know I said that last time, then I ended up having J surgery less than a month later, but this time for real!) Since our first 2 rounds of GI testing have not really given us any information we didn't already know about my cranky insides, I am having a colonoscopy next week. I've had enough endoscopies that my doctor felt that we didn't need to re-do that, so just a lower scope. It's been about 10 years since my last colonoscopy so even though we're not really sure we'll get any answers from it, we all feel that it needs done. Actually one of the reasons it has been so long since my last lower scope is because up until recently, I could not get my intestines to move without prescription motility medications. Even with those, it was a challenge at times to keep things from causing partial obstructions in my bowels. My doctors were concerned that even with the typical colonoscopy prep I wouldn't be able to get empty enough for the procedure...so we held off. Since November, however, my intestines have all of a sudden gone into hyperdrive. Not fun symptoms to have been dealing with for going on 6 months now, but at least it will be easy to get adequately cleaned out for the scope...small blessings =P

After the colonoscopy I'll be following up with my GI to determine what (if anything) came up during the scope and where to go from here. We're running out of things to test and potential causes for my intestinal issues at this point, so please be praying for discernment for my doctors to know what they are looking at and what to do and wisdom for us as we have to make treatment and testing decisions that may not be what we were hoping.

The next possible appointment is with my neurologist. When I was in the hospital with my Sherman issues, I had an EEG come back abnormal and a brain MRI that was flagged as inconclusive. I was told to follow-up with my neurologist, so I took the disk and report for her to review and decide if she needed to see me before my scheduled appointment in July. Hopefully this is nothing and she will be able to tell it is relatively the same as my MRI from last September. If not, then I'll be seeing her a lot sooner than I expected.

I am also working on scheduling with 2 new doctors this year. I know, I thought I was done with new doctors, too...apparently appointment scheduling for a rare disease patient is never done...One has actually already been scheduled. When I saw my allergist last week at my Xolair appointment we discussed where I felt like I'm at right now and my current symptoms. Despite now going on 45+ days epi-free he agreed that we have not really solved anything, just given me more tools to manage things until we get actual answers. Unfortunately, those answers are continuing to be very slow in coming...He recommended an autonomic neurologist that he shares a few patients with as someone who might be able to piece things together. I called to schedule with him and have an appointment on October 31. Don't worry, I'll remind you when it gets closer =P At least he is right here at the Clinic.

The other appointment is with a geneticist in Florida. I did see a geneticist here in Ohio a couple years ago, but considering she had not heard of mast cell diseases or POTS, I'm not confident that the appointment accomplished anything. I was given the name of this geneticist in FL by some friends who have had similar symptoms and diagnoses who felt like he was finally able to pull all the pieces of their puzzle together. Despite having a solid mast cell diagnosis and very much trusting Dr. Afrin, there are still outstanding symptoms that just don't quite seem to fit and keep reappearing and progressing. Even Dr. Afrin encourages his patients to make sure we're not missing something else simply because we have a mast cell diagnosis, so we are doing what we can to make sure we have covered everything that could possibly explain these odd symptoms that don't quite fit in anywhere right now. This appointment will hopefully be sometime in July, and we are still deciding whether to go in person or do a video consultation.

So that's what's coming up in the next few weeks. My updates have been less frequent lately mostly because not much is going on. We're in a holding pattern while we wait for scheduled testing, follow-up appointments, and scheduling with new doctors. There's just not much to report. I am thankfully 45+ days epi-free thanks to Mort and having IV benadryl, and almost 3 weeks ER-free thanks to IV zofran. We are able to manage things at home (sometimes more effectively than others), but not really making much progress in terms of resolving symptoms and getting me feeling better.

I have some days that are more good than bad. I have a lot of days that are rough with a few hours of relief sprinkled in. I have some days I'm barely able to walk down the stairs to let the dogs out. I spend many nights in the bathroom in pain and throwing up. I often use multiple doses of IV meds to get through the days and keep me from needing epi or the ER. I am sometimes able to drive myself to appointments and other times rely on friends and family. Some days I need a wheelchair just to get out of the house, other days I'm able to chase Leni in the yard for a few minutes. It's a lot of managing symptoms, seeing doctors who can hopefully help, and praying for strength in the meantime.

And in that meantime, we're still smiling! Our motto in Bokatopia is "Smile Every Day" and we do. Some days it's because things feel good and we're thankful, other days it's through tears and much tougher, but no matter the day, it's always because we have hope in Christ that we cling to even when life is tough. Even Leni gets in on the smiling!