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.

1 comment:

  1. Prayers and blessings for you in this transition! We just moved a month ago and yes it's a big step in "adulting" :)