Friday, October 13, 2017

What Can I Eat? It's Complicated...

Does anyone remember back when facebook was just for college students? At that time, you could have your relationship status as either in a relationship, single, or it's complicated. When I try describe my relationship with eating, it has fallen into one of those 3 categories. For most of my life, I was "in a relationship" with food like anyone would be. I'd eat 3 meals a day, snacks, way more fruit that was probably healthy (it's possible, trust me...), and got teased throughout my childhood for being adopted since I did not share the love of chocolate of the rest of my family and once threw a tantrum in a grocery store because my mom wanted to take me out for ice cream and I wanted to go home and eat carrots. Yes, that is a true story.

A few months before our wedding, my relationship with eating became a bit strained when I stopped tolerating solid food. A few months later, I was safely "single" when I was down to just liquids with no solids in sight unless I wanted to also have an epipen next to my plate and the ER on speed dial. For close to a full year after having my first feeding tube placed, I was still very much "single" as I still couldn't eat anything solid without risking anaphylaxis. Then Xolair entered the picture in February 2016...and I entered the "it's complicated" phase of my relationship with eating which is where I'm still hanging out.

I get asked a lot what I can eat or if I can eat or what foods are safe if we've been invited over for dinner. I don't always know how to answer...usually I just say, "It's complicated..." But it also gave me the idea for this blog post, so if you've ever wondered and been afraid to ask or asked and been more confused AFTER my explanation, I hope this fills in those gaps!

This was from May 2017 when I had 
Herman V (turtle) and Sherman II 
(alligator).
Before actually addressing those questions, let me give you some background. If you haven't noticed by now I have a feeding tube. Two feeding tubes actually. I'm currently on Herman VII and Sherman III. Herman is my G tube (goes into my stomach) and Sherman is my J tube (goes into my intestines). My first tube (Herman I) was placed in February 2015. Despite having motility issues in both my stomach and intestines, those were not the reason I ended up needing a feeding tube.

Depending on my symptoms
and overall condition I'll use
between 4-8 boxes of this
formula each day.
Mast cells are involved in digestion. When you eat, the mast cells release the chemical mediators they contain to help break down food and begin the digestive process. That is a good thing. That is what is supposed to happen. Only for me, I have close to 5 times as many mast cells as I should in my gut. In addition to having too many mast cells, mine are also hyperactive and don't have an "off switch." Since mast cells are also involved in allergic reactions, what my body should be interpreting as normal digestion is misinterpreted as an allergy response due to the overwhelming mast cell activity. Basically I was having allergic reactions to the digestive process. I was going into anaphylaxis from digestion and not necessarily because of any specific food allergy (although I do have some of those, too).

So as you can imagine, that's not exactly conducive to living...my relationship with eating was very much "single" and I had to choose whether I was going to avoid food and starve or attempt to eat and risk my throat closing...not exactly a fun decision to have to make. That's when Herman I made his entrance. From having Herman I placed until February 2016, I stayed "single." I could tolerate some soft foods occasionally, but for the most part lived on slurpees (literally), smoothies, and my tube feeds.
Soft food isn't all bad! Dole
Whip from Disney qualifies =)

In February 2016 I was on Herman III, and we finally got insurance approval to start Xolair for my mast cell disease. By April I was able to tolerate solid food again without risking anaphylaxis. Over the summer I continued to improve, and by the fall, I was able to eat almost normally when I went to Disney with my mom and when Nick and I traveled out to CA. I was still running my tube feeds, but it was not intended to make up all, or even the majority, of my calories. I was back in a loosely defined "relationship" with eating.

Then we hit November 2016 and everything hit the fan. I was very much "single" yet again as anything I would eat didn't stay in me for long. I was still on Xolair at the time, so I wasn't going into anaphylaxis from digestion this time. Instead, I would either throw up or otherwise expel any oral intake from my body numerous times a day and often throughout the night as well. This dragged on for close to 9 months before we made any progress in controlling these symptoms. And that brings us to where I am right now...in a relationship with eating that can only be described as being very much "complicated."

Trying a Kylene-friendly
(aka allergy friendly) DONUT
at Disney Springs in 2016 =)
So what does that mean exactly? Can I eat? What can I eat? What can you make me for dinner if I come over? Good questions...

These questions are tough to answer because my answer one day can be completely different from my answer even just from the day before. Sometimes my answer at 10 am will be different than my answer at 6 pm on the same day. Let me try to explain this a bit more with what is called the Bucket Theory.

The idea is that the bucket represents each day, and severe reactions or anaphylaxis occur when the bucket overflows. Ideally I start with an empty bucket when I wake up in the morning. Anything that could be a trigger adds some amount of liquid to the bucket. Hot, humid weather in the summer might add 20 oz. Eating solid food might add 15 oz. Being exposed to cigarette smoke outside a store might add 50 oz. You get the idea. Pretty much everything I do has some sort of an impact on the amount in the bucket.

But not everything is adding to what's in the bucket. There are some things I can do to help reduce how much is building up in my bucket. My morning medications might take out 10 oz each. My IV meds might take out 50 oz. Drinking fluids with electrolytes might drop it another 20 oz. A nap might lower it another 15 oz. Moderate exercise usually can drop the volume another 20 oz or so (however intense exercise would add to the volume).

Then there are other things that initially will appear to increase how much liquid is in the bucket, but in the long run actually decrease the total amount. It's like when you use a scoop to get liquid out of a bucket but before the amount drops, it first seems to increase due to liquid being displaced by the scoop. That is what happens with Xolair. The injection might appear to add 50 oz to the amount in the bucket, but once things settle it really took away 100 oz. The only challenge is that if the bucket was already almost full, that 50 oz could still cause an overflow even though it didn't really add to the total volume.

Now, remember when I said "ideally" I start with an empty bucket each day? Ideally I would get an empty bucket each day, but that's not always the case. I also said that when the bucket overflows, that means anaphylaxis. Which is true, but there are ways to buy some time. If I see my bucket is almost full, I can make the choice to spill some of it into a second bucket which gives me a bit more room to tolerate additional triggers. But that second bucket doesn't come from no where...that bucket is for tomorrow. If I choose to let some liquid spill over into that second bucket to give me a bit more leeway today, that means when I wake up tomorrow, I'm not starting with an empty bucket. That means I will have to work harder to get liquid out (more meds, more time to rest, etc.) or I have to avoid triggers (not going out, sticking to only liquids/soft food, etc.).

That is where this connects with what I can eat. Liquids do not add anything to the bucket. Actually, if I'm drinking something with electrolytes in it, it can actually help lower the volume in the bucket. Solid food does add to the bucket. On a day that I have mostly been at home relaxing with Nick or doing a puzzle, I have a bit more room in my bucket to try eating solid food. Compare that to a day where we were running a bunch of errands, maybe I had an appointment, and I didn't sleep well the night before. My bucket may be almost full and solid food could push me over the top. I might wake up with an empty bucket and be able to eat something mid-day, but then get exposed to cigarette smoke somewhere, and now my bucket is almost full and the solid food that was okay earlier in the day is no longer a good choice.

I hope this gives you a glimpse of why my relationship with eating is very much "complicated." If you want to invite Nick and me over for dinner and ask me a week before what I can eat so you can prepare something, I don't always have an answer then. You may see me eating something one day, then unable to eat anything another day. There are foods that are safer than others (some solid food adds more to the bucket than other solid food), so I can give you a general idea of what I can or cannot eat, but even I don't always know until we're sitting down to eat what I can realistically eat.

Picnic with my best friend on our trip back in September!
But just because I can't always eat, it doesn't mean that I don't still enjoy spending time with friends and family! Sometimes it can be tough if I'm in a rough patch and not able to each much, especially since so much of our lives and holidays revolve around food, but I am so grateful to be where I am now and not still facing the choice of starving or anaphylaxis! So please don't be afraid to spend time with us over meals or even ask what I can or can't eat on a given day. I'm just as ready as the next person to enjoy the best season of the year with some fun picnics regardless of what I can or cannot eat that day! Although if there happens to be a smoker nearby...there goes any room in my bucket for the day =)

Saturday, October 7, 2017

We Don't Belong Here

Do you know the feeling of being in the middle of a crowd but still feeling alone? Or when there is activity all around you but somehow you feel distant from it all? Kind of like you are watching the world go by and even though you know you're a part of it you somehow feel disconnected. When you're right where you know you're supposed to be, but you can't help but feel that you just don't belong.

That's kinda how I've been feeling lately. I'm going through the motions of life, but still feeling that I'm out of place and just don't belong. At first this feeling came with a sense of urgency. Like I needed to fix the part of me that just felt out of place. Because despite the challenges that life brings on its own plus the added fun from mast cell disease, I love life and the feeling of not belonging brings an uneasiness that does not fit in with the joy and peace and hope of trusting God.

But one day it kinda hit me out of no where. Well, not really out of no where. It was only a couple of hours after I found out a friend of mine who also had mast cell disease passed away. I was actually in the ER myself when I found out thanks to my own nasty masties and another round of anaphylaxis. Seeing the post on facebook brought tears to my eyes, and the answer to the question I didn't realize I had been asking.

She was a believer, so I know I will see her again. I know is she free from pain and IVs and anaphylaxis and epipens and mast cell disease. I know she is healed, whole, complete, and in the presence of her Savior. The end of her life here on earth was the beginning of her eternity in heaven. What feels so cruel here on earth is actually a reason to celebrate. Only it's so hard to do. Death isn't coming to terms with the end of a loved one's life. It is coming to terms with the reality that there is still a lifetime to be lived without them.

And that's where I've felt stuck. Almost like I'm watching life go by while still being an active participant but at the same time feeling a distance that can't really be explained. When we lose someone close to us who was a believer, we know they are in heaven. We WANT to rejoice with them. And yet when the memories comes, the tears often come faster and easier than the smiles. So we tell ourselves we're rejoicing with them, we tell everyone else we are rejoicing with them, but inside we're fighting to keep ourselves from crumbling and watching life go on while at the same time wanting to shout that life CAN'T go on without them...and feeling distant, removed, disconnected...

Yet at the same time, we're still experiencing peace and joy despite the sorrow because we know that ultimately our HOPE is what gives us the strength to live that lifetime without them. How does that even work? I didn't understand it back in May when one of my family's dearest friends entered into heaven. I didn't understand it when I first read the posts sharing the news that my friend had passed away last week. How is it even possible to feel the rawest emotions of pain and loss yet still have a tangible lifeline of hope? What drives this stark contrast of feelings that are on such extremes that there are barely words to explain them?

It's because we don't belong here. We weren't created for earth.

Death and loss bring together the intersection of life on earth and eternity in a way that nothing else can. When we are facing loved ones leaving the only life we know to enter into eternity with God, we are at a crossroads of flesh and spirit. As we celebrate the beginning of their eternal life in heaven, we are at the same time mourning the end of their fleeting life on earth. Only it doesn't feel so fleeting for those of us trapped in time, living day by day, looking at what feels like an eternity stretching out before us until we finally get to enter actual eternity. It's at that point where one life ends and another begins that we get a glimpse of eternity.

It's like when you're hiking and just manage to catch a glimpse of a bushy tail before the fox disappears into the woods. It's gone before you can grab your camera or even say you saw it. But you know it was there. If you actually belonged in the woods like the other animals do, maybe you'd actually get to see the fox. But you don't. So you have to settle for the quickest of glimpses as it darts off knowing that it is there and very real, but just out of reach.

When we talk about rejoicing with loved ones when they have passed away, we ARE rejoicing with them. We may not be able to see it or know much about it, but we know heaven is there. We get the quickest of glimpses as we face the crossroads of physical death and spiritual life, but that's it. It passes so quickly we can't put it to words and often can't even figure out how to explain it before life continues on, seemingly unchanged...except that now we feel like we're watching from the outside looking in, appearing to participate yet just going through the motions, present yet feeling so distant.

Because we're reminded that we don't belong here. We got that glimpse of eternity and remember what we were created for. And in that meeting of heaven and earth, we feel what can only be described as a God-given understanding that we were created for eternity and feeling how far we are from where our soul longs to be. It is the ultimate meeting of flesh and spirit, and in that, an understanding of eternity that can only be experienced, not explained.

And yet here I am still trying to explain something that has no words to describe it. We experience these moments of somehow just knowing we don't belong because we were created for more than just this life. And it's when we get that harsh reminder and are in the middle of heartbreak at this crossroads of flesh and spirit that our souls feel that deep pull toward what we have been created for.

The services for my friend who died last week are today. It's a Celebrating of Life Service which is a great way to put it. We are celebrating the time we knew her and the impact she had in our lives. But we're also celebrating her new life free from the pain of this world. Yet everyone who has lost a loved one knows that even in rejoicing with our family member or friend who is no longer with us on earth, we experience some of the rawest emotions possible. The pain of losing a daughter, sister, wife, mother, friend, or whoever it may be is beyond explanation.

It is at that point of the rawest emotions known to man where our spirit and flesh collide. Where we are reminded that we just don't belong here, and our flesh mourns the loss of someone we loved so dearly and sees a lifetime here on earth still to be lived without them. Yet in the midst of that pain, what keeps us going is that our spirit knows this isn't the end. And all we can do is cling tightly to our hope of heaven, the only thing able to break through the fog of grief.

*This post is written in memory of a dear family friend and mast cell sister who both were called home to where they truly do belong far too early for those of us still here missing them*

Thursday, September 28, 2017

What I WOULD Have Paid

As of November 1, my current insurance company and I will be parting ways. After 10+ years on the same policy, I will be entering the great unknown that is a new insurance plan. To say I am excited would be completely WRONG. I am not looking forward to this transition. Not only do I now have to meet a new deductible and out-of-pocket max in November (not to mention AGAIN come January...), but I know nothing about this new company. It is safe to say I know the ins and outs of my current insurance better than most of the representatives I speak to on the phone. Having to leave that and start all over with something so incredibly important for my day to day health and functioning is not on my top 10 list of anything.
When this is what your chart looks like, insurance is a big deal.

Now, that said, a wonderful silver lining is that I will finally be able to leave my mail order pharmacy and specialty pharmacy behind. Sadly (*note the sarcasm*) my new company has their own mail order and specialty pharmacies, so it will be wonderful parting of ways. Let's be real, I'm sure they'll be just as glad to see me go.

Anyway, I figured that since I will soon be losing the comic relief that is the ridiculousness that happens with every. single. order. it was time to take a moment to reflect on the past few months and how much time was wasted in pointless conversations that accomplished nothing. As I started to do that, though, I realized not just how much time was wasted (for both me and the companies I spoke with), but how much I was overcharged for appointments and medications and whatever else they could come up with. And I started wondering how much money I would have lost had I simply paid every statement without disputing anything...

My current company covers Epipens at 100%.
I've used 32 this year...at the current national average 
of $330 per 2 pack, I'll let you do the math.
But before I got to how much extra I might have had to pay, I decided to see how much money was wasted by my mail order pharmacy's recent Nonstop Texting Fiasco from a couple of weeks ago. Just for kicks and giggles, I did some calculations for your enjoyment. I received 1069 text messages over the course of 3 weeks. Assuming it was a system-wide glitch like I was told, that means that the majority of the 115 million patients in their system probably received a similar number. That means they sent out an estimated 123 billion pointless text messages in those 3 weeks. Assuming the lowest possible texting rate I could find (at $0.004 per message), that is approximately $492 MILLION DOLLARS spent on pointless communication...(Side note: Since they supposedly resolved this issue, I have continued to receive over 350 texts from them despite them having no record of my phone number anywhere in their system...)

 Now, I do know not everyone in their system has a texting phone and as a large corporation, they probably have a business texting plan that may provide even lower per message costs. However, no matter how you look at it, they wasted a ton of money with their "minor system glitch." And we wonder why healthcare costs are so high...

Anyway, after doing some fun math to figure out how much they might have wasted during this "minor" glitch, I started thinking about how much extra we as patients end up being charged due to "minor" billing errors. Even when the mistakes are small, things can add up so quickly...especially when I have multiple appointments each week, Xolair every two weeks, medications being ordered, blood work, procedures, etc. So I actually went back over some of my messed up statements from the past 6 months and a couple of other isolated dates where I knew there had been major issues to see how much I would have paid...

First up is that same mail order pharmacy that couldn't get their texting under control. My account is set up so they can receive orders directly from my doctor but they are not supposed to fill the orders without my okay. In theory it should always be this way considering the patients are on the hook for the price of the medications once they ship.  But sometimes this step gets missed...Another reason I prefer to speak with them before they fill the orders is because I have zero faith in their ability to fill the orders accurately. No, I am not exaggerating...Let me present to you, Exhibit A.

After a recent allergy appointment, we decided to switch up some of my medications for a couple of reasons (which are not important for this post). I also needed a refill on one of the meds I have been on for a while, so my doctor faxed the 2 orders to the mail order pharmacy. I waited for a call, but it never came. I called a week later and was told there were no scripts in the system for me. I called my doctor and was told they faxed everything the day of my appointment. Two days later, I got a shipment with the medications...and a bill for $70.

The refill was processed correctly, so at least that was mostly okay (despite still filling it without my okay). The other medication was the new one I was supposed to start. It came in a prescription bottle with no other information about it. No list of ingredients, no prescribed dosage, nothing. I already knew the dose I would be taking, so that wasn't a huge deal, but the lack of ingredient list was a HUGE deal.

In case you missed it, I am severely allergic to milk and any milk products. Throat swelling, anaphylaxis, can't breathe, etc. allergic. There is only ONE readily available antihistamine (in tablet form) that does not contain lactose monohydrate. Despite milk being one of the top 8 allergens, lactose monohydrate is also one of the most commonly used inert ingredients (aka fillers) found in all sorts of medications in the USA. Yet medications do not have to be labeled like food products. Basically this means I have to know the ingredients of every. single. medication I want to take to make sure it doesn't have any form of milk (or any of my other allergens) in it. The medication they shipped was a white/yellow tablet...I could tell just from looking at it there was no way it DIDN'T have lactose in it.

So I called the pharmacy. At first the pharmacist tried to tell me the inert ingredients do not have to be disclosed because they do not contribute to the efficacy of the medication. I agreed but also pointed out that I wasn't worried about the efficacy of the actual medication, I was worried about whether I would go into anaphylaxis from a single tablet. So she finally agreed to read me the list of inert ingredients which (surprise, surprise) did contain lactose monohydrate. I told her that I could not take what they shipped because I was allergic to it. Then she tried to tell me that being lactose intolerant would not matter because the ingredients were broken down so it would not cause any side effects. Remember, this is the actual pharmacist I was speaking with. I agreed with her again, and repeated that I was allergic, not intolerant, and even the small amount of lactose could cause anaphylaxis. She finally relented and said not to take it if I was worried about a severe reaction (no kidding...). But then I had to deal with the fun of disputing the $50 bill for this medication. Not only did they ship it without my okay, but they also sent me a medication that had my most severe allergen in it...I should probably mention that they do have a list of my allergies on file...


Moving on to my oh-so-wonderful specialty pharmacy that has gotten more than its fair share of attention on this blog thanks to the apparent inability to function with any sort of efficiency or accuracy...For all the issues I have had with this company, I'm actually surprised I haven't had more billing issues with them. I had 2 separate instances where they shipped the wrong form of one of my medications (after I checked multiple times that they were sending the correct formulation). They also tried to bill me $35 for each mistake claiming they needed to recoup the expense of not only the medication but also the shipping charges. Basically they were asking me to pay $70 for their mistakes...yeah no. That got straightened out and all of a sudden I had 3 random $20 charges on my account, one from May, one from July, and one from September. When I tried to figure who what those chargers were for, no one seemed to have an answer...Even the billing specialists don't seem to know why have I have 3 dates of service with $20 charges. No details, no description, no reason why, just a random $20 charge in May, July, and September. Last I heard they were going to talk with my insurance company to see if it was something on their end. My bet is that someone billed my medications under my pharmacy benefits instead of my medical benefits (which is where the IV medications are supposed to go with my current policy) since my pharmacy co-pay is usually $20.

I know so far the amounts have seemed small, but they all add up. So far we're already up to $180...and that is only looking at mistakes made by my mail order pharmacy and specialty pharmacy within the past 6 months. If I went back farther that amount would only increase. If I look beyond just those 2 companies that amount increases...so let's keep going!

Next up are both of the major hospital systems in northeast Ohio. (Note: I am purposefully leaving names off this post. My point is not to bash any of these individual companies, but just to point out some of the major issues that come with medical billing.) Let's start with the lesser of the two in terms of billing errors. These are very minor issues. I saw the same doctor twice within 6 months. Both times the appointments were incorrectly billed as out-of-network at $30 co-pays for each appointment instead of the in-network rate of $15. Like I said, pretty minor issue. It only took 5 months for it to be resolved...

Now we come to the other major hospital system in northeast Ohio. In defense of this system, I do see significantly more doctors here so there is a lot more opportunity for error. All these billing errors do not in any way reflect back on the quality of care from the doctors. Last year I had back to back days of appointments with 2 different doctors. Somehow BOTH of those appointments were billed incorrectly. The cost for each appointment was $463. My insurance was the same both days, I was in the same hospital system both days, the type of appointment (follow-up, established patient, non-emergency) was the same...logic would say the billing should have been the same...Except the first appointment was billed in some incredibly weird way that even I couldn't figure out what they were trying to do... approximately $192 was submitted to insurance and has been pending coverage for 11 months now and the other $271 was billed to me. The billing people tried to explain that I had to meet a deductible and out-of-pocket max before my insurance would pick up the rest until I pointed out I met both on January 7 and was only responsible for the $15 co-pay at this point. Like I said, we're going on 11 months of trying to sort this out. The appointment on the next day was billed as out-of-network for a $30 co-pay instead of $15. Another fairly minor mistake, but if you're counting, we're already up to $496 that was charged to me that I should not have been responsible for. I'm still working on getting an accurate bill for this one, too.

I would be leaving out a huge part of this mess if I didn't spend at least some time talking specifically about my insurance company. After 10+ years, I feel that I know the ins and outs of my policy better than the representatives I speak to on the phone most of the time. So when they screwed up my transition to the COBRA policy, it only took NINE MONTHS to get things straightened out. One of the reasons we decided I would continue on the COBRA policy despite the high premiums was because my coverage would carry over from the plan I was on with my parents and since I would have no lapse in the policy I would not have to meet a new deductible or OOP max in September when I aged off my parents' policy. Except someone messed up when they entered my info in the system for the COBRA policy...instead of my actual birthday, they entered the day AFTER my birthday. That meant that instead of my coverage ending at 11:59 pm the day before my birthday and the COBRA policy picking up at 12 am on my birthday, it didn't kick in until 24 hours later. Not only did that create a lapse in the policy which meant I would have to start over with the deductible and OOP max, but I ended up in the ER on my birthday and had all the associated charges with that billed to a non-existent policy and ALL came to me as uninsured.

This got even more complicated because I didn't even know there was a problem until about 6 weeks later when I got the first bill from that ER visit and saw that I was somehow "uninsured" that day. PLUS, in that 6 weeks, I had other ER trips, multiple regularly scheduled appointments, medications, etc. All of which were billed incorrectly as though I had not yet met my deductible or OOP max. Not only did I have to get everything adjusted to accurately reflect my birthday so there was no lapse in coverage, but I also had to have everything that happened within those six weeks between the mistake being made and the realization of what happened re-billed. In those six weeks, I had about $10,000 of incorrect medical bills and $1500 of the incorrectly reset deductible and OOP max.

Now things get a bit tricky with the What I Would Have Paid amount. The $1500 of the shouldn't-have-been-owed deductible and OOP max can absolutely be applied to our running total to bring it to $1996.38. I was charged about $3200 for the ER visit on my birthday for being "uninsured" so we'll add that, too. The $10,000 is where it gets a bit less straightforward. Even with the insurance mishap, I was never responsible for all of the $10,000. My policy still covered things the way it should have just with charging me for a new deductible and OOP max. Since we've already accounted for that, I'm going to give them the benefit of the doubt and assume they did process this correctly other than the already identified mistakes. So for now our total stands at $5196.

This next issue was only noticed (and eventually resolved) because I knew my insurance policy inside and out. It's one of those little details that doesn't ever really seem to matter until it does. So here goes. If you didn't already know, it is quite common for there to be out-of-network doctors working at in-network hospitals. This can be oh so much fun to deal with if your company doesn't have this fun little loophole that most people probably don't know is there. My insurance policy specifically states that if I am at an in-network hospital, out-of-network doctors are billed as in-network unless I specifically request them. In April I had an endoscopy to change my feeding tube and take biopsies, then in December I had another tube change also during an endoscopy. For both procedures, the anesthesiologists on my case were out-of-network doctors working at an in-network facility. I was initially billed over $1300 for the out-of-network doctors in the room during my procedures. Except thanks to this loophole, I knew that it was incorrectly billed as out-of-network since I had no requested either anesthesiologist. (Side note: The amazing anesthesiologist who has managed my procedures since my J tube surgery in January is in-network!) Surprisingly this only took a few months to resolve despite the representative I spoke to on the phone having never heard of this policy before. Still, we're now up to $6496 of what I shouldn't have had to pay and didn't.

Of course we cannot neglect issues that encompassed more than just one company. This next example was a collaborative effort between that second hospital system I mentioned and my insurance company. The January after the COBRA transition fiasco I was admitted for uncontrolled mast cell reactions. I spent 5 days in the hospital getting IV meds around the clock to stabilize my mast cells down and get my secondary symptoms under control. Six weeks after getting discharged, I got a letter notifying me that my insurance company was denying coverage (for the entire $25,000) because the billing code used was not a valid reason for admission. I later found out only a single billing code was used and it was for "vomiting without nausea." I did not vomit a single time while I was admitted, and was on IV nausea medication the entire 5 days. This one was particularly fun to sort out because I got to play middle-man between the billing department at the hospital and my insurance company...over a year later, we finally got a 3-way conference call and things started moving in the right direction. It took a total of FIFTEEN MONTHS to get this sorted out. I ended up only owing my deductible and OOP max instead of the $25,000 I was originally billed.

What we're trying to avoid...
I don't know how to add this to the running total because I doubt that I would have actually paid $25,000 even if they didn't resolve this issue completely. With various payment options and other miscellaneous coverage policies that address situations like this, the amount I may have actually been expected to pay could have been anywhere from $5000 to the entire amount. So I'm not going to adjust that running total for this, but just provide it as another example of billing fun that has to be dealt with.

That means that we're ending at a running total of just under $6500. And I could have found many more examples from the past 10+ years with this insurance policy. Remember, this only covers about 6 months back for the mail order and specialty pharmacies, 2 dates of service for the one hospital system, 2 dates of service for the other hospital system, ONE DAY (with 6 weeks of fall out) for the COBRA issue, and 2 dates of service for the anesthesiologists. And we're STILL looking at an amount that could cover the cost of both of our cars combined...with the rate that Nick and I go through cars, we certainly can't afford these billing issues!

Yet despite all these issues that I've had plus the dozens more I didn't mention, I'm still wishing I could stay with my current company. I'm in a battle of the two cliches...the grass is always greener on the other side and the evil you know is better than the evil you don't know. Part of me is hopeful that this new company will have their act together slightly better than my current company aka that the grass is greener...but a huge part of me is also nervous because I know there is no perfect insurance company and who knows how things will transition over aka no idea the possible evil that could be coming (yes, evil is a bit of a strong word, but I'm running with the cliche so just go with it =P).

All jokes aside, though, this is a tough place to be in. When so much of my ability to function is determined by the treatment I am on and the medications I have been prescribed, it's not exactly reassuring to know that the only medication to even touch my GI issues in the past year is not a covered medication under this new policy. I'm on treatments that are not common to being with for a rare disease that is not well known by the medical community as a whole let alone by the case managers of an insurance company. So I'd be lying if I said I wasn't apprehensive about what is to come in just about 5 weeks now.
Replace getting through bad days with dealing with 
annoying insurance companies...

But I'm prepared as I can be, and I've been doing everything I can to make this transition as smooth as possible. So it's time for me to sit back, trust that God has this (just like He's had everything else) under control, and spend these last few weeks getting as many laughs as possible from my current insurance company and associated sidekicks (aka pharmacies). Thanks for taking the time to laugh along with me (or cry...cause I've certainly done some of that, too...). If you think about in these next weeks as November rushes toward us, please keep this transition in your prayers. I'm ready to be shocked by the efficiency and accuracy of my new company!

Tuesday, September 19, 2017

Colonial Williamsburg with Mast Cell Disease and Service Dog

If you just want the recap of our trip and all the fun and mischief Nick and I got into during our recent trip to Williamsburg, you can read that here. This post is going to be more about how we managed my mast cell disease and Leni while we were there. I have another post I am working on with more general travel tips and tricks, but this one will be about specifics in Williamsburg.

We chose to stay at the Govenor's Inn which is within walking distance of the historic area. I would recommend it. It is not fancy, but was VERY reasonably priced compared to the other hotels that were within walking distance. It was motel-style (exterior entrances) which I actually prefer when we are traveling with Leni. It makes things much easier when we can just open the door to take her out right before bed or right after waking up instead of having to walk through an entire hotel. Although, we did have a minor access issue with Leni at check-in.

The Govenor's Inn is pet friendly, and they have specific pet policies in place like any business that allows pets. So when we walked into the lobby, the front desk receptionist told us that we could not bring Leni into the lobby. I explained that she is not a pet but my service dog (and she was wearing her vest). She said that it was their policy that no dogs were allowed in the lobby to be compliant with their health code and in the case that any other guests were allergic to dogs. I offered to show her the ADA (American's with Disabilities Act) on my phone where it specifically states service dogs are exempt from health code requirements and cannot be denied access due to just the possibility of an allergy and that if there is someone who is truly allergic, both parties must be accommodated. She still didn't seem convinced, but didn't say anything else and let me stay with Leni.

For what it's worth, I had not planned on being in the lobby much anyway because I wasn't eating breakfast so I didn't have any need to be there. The only reason I said anything is because if I simply agreed to take Leni out of the lobby (even though it didn't matter to me), someone else with a service dog could face the same access issue I did only now the hotel could use my willingness to comply with keeping Leni out of the lobby as an example of other service dogs who were not allowed in the lobby as proof they were in the right. So I spoke up respectfully and showed what the ADA actually says, and hopefully other handlers will be able to be in their lobby with their service dogs without any issues. Even with this minor issue, though, the staff were wonderful, very friendly, and loved meeting Leni when we were out walking her. The receptionist working when we checked out did not say anything about Leni being in the lobby.

The rooms were adequate and what you would expect from a basic, motel-style hotel. Each room had a mini-fridge which we always look for because it means I can pack things that need to stay cold, we can stop by a grocery store to get safe food and drinks for me and extra snacks for Nick, and I can keep my IV fluids cold way easier than having to use a cooler and ice. There was a continental breakfast included which Nick gave about 3/5. Being so close to the historic area was great, and I did not react to anything in the room which is always a plus! (I did call ahead to request chemical free cleaning like I usually do.)

We actually ended up driving both days even though the hotel was within walking distance. We really didn't know what my energy levels would be like, so we wanted to conserve my energy as much as we could. All parking for the historic area is at the visitor center and you can either walk from there to the historic area or take the free shuttle. Plus, the first day we had to go purchase tickets at the visitor center anyway. Colonial Williamsburg actually has an incredible disability discount! When we went to buy our tickets, the lady helping us asked if Leni was a service dog and what tasks she does (both questions are not only legal but encouraged by the ADA). After I answered, she said that they give a 50% discount for guests with disabilities! She ended up giving us 50% off both tickets, not just mine. I'm not sure what the actual policy is, but it might be worth asking. I didn't know this existed, and we already had a discount from staying at a preferred hotel, but she gave us this discount because it was better. They were wonderfully educated on all sorts of disability access and very accommodating.

Governor's Palace from Duke of Gloucester Street. An example 
of the walking to get to some of the buildings.
Even the website for Colonial Williamsburg is very informative when it comes to the various accommodations they provide for all sorts of disabilities. They label which buildings are accessible and where those entrances are. In the buildings that are not accessible, all the historical period actors have an adapted presentation they can do outside the building on request. However, I will say that while it is certainly possible to use a wheelchair in the historic area, the sidewalks are brick or cobblestone or gravel...not exactly the easier surface to wheel across. Years ago my dad was in a wheelchair after ankle surgery and it was very much a workout for whoever was pushing the chair. That was one reason I wanted to walk as much as possible. Because I knew using my wheelchair would be close to impossible for me to propel myself, tough for Nick to push all day, AND could possibly cause m
ast cell issues since vibrations can give me hives and start a reaction.

More walking...the building all the way at the end is the Capitol.
BUT, the streets have lots of benches and are shaded.
Thankfully, I was able to walk both days! The historic area has benches all along the streets which was great for plenty of rest breaks as we were wandering around. Many are in shaded areas, and there are others in the sun for when I needed to warm up. Almost all of the buildings had limited seating for those who needed to sit during the presentations and all the tours we went on had plenty of designated sitting time while the guide was talking. It is a fairly large area, though, so I would recommend planning out your day. We purposefully planned our days so we didn't have to walk back and forth across the entire historic area multiple times a day. That did mean we missed a couple things we would have liked to see, but if I had passed out or had a major reaction, we could have missed more.

Oxen pulling a cart. Leni wasn't sure what to make of them.
When comes to service dog access, they were wonderful. They specifically state that service dogs are welcome throughout the historic area and in all exhibit areas with the exception of the petting area at the farm and recommendations of not having them near the shooting range without proper ear protection. There were actually a lot of different animals all over the historic area. Horses and oxen pulled carriages and carts, there were goats and sheep and chickens in multiple areas, and there were lots of people out walking their dogs. Colonial Williamsburg is open to the public, but you need a ticket to go in the buildings to watch the demonstrations or to take any tours. This meant there were plenty of locals out for a run, enjoying the fantastic weather, and of course, walking their dogs.

One challenge we had is that Leni is not used to being in work mode when we're outside. Typically when she is working we are inside. When we are just going for a walk around the neighborhood or going to the creek or in the yard, she's usually off duty. So she was a bit confused on how she was supposed to behave when we were outside most of the time, but she was still supposed to be in work mode. Her behavior was not wild or inappropriate for a service dog, but it was enough that I could tell she was a bit off because I know her so well. She was more easily distracted when we were outside, and her heel was a bit more relaxed than I like it to be when she is working. We worked through it, and she still gave me multiple alerts during our time there, so I'm not upset with how she behaved. It just gives us things to work on for next time and future outdoor excursions. I hope this can be good info for other handlers to be aware of if you are traveling to Williamsburg with a service dog.

Tired Leni Bean!
Also, something else useful to know is that there is a fantastic dog park in Williamsburg at Waller Mill Park. Typically I am NOT a fan of dog parks, but when we are traveling, it can be a nice way to let Leni run around and stretch her legs. We decided to try it in the middle of the day when most people would be at work, and there was only 1 other dog there who was very friendly and playful. The dog park was in a wooded area and fully fenced with a separate area for small dogs. Be aware, though, that you have to register yourself and your dog at the office before using the dog park. They need proof of current rabies vaccine (and proof of registration if you are local). I use an app on my phone called Vitus Vet where I keep both dog's shot records so I always have them on me. It came in very handy since I could just show copies of her vaccination records even though I didn't bring any of the actual records with us. It costs $2 to enter the park and another $2 for the dog park. The park itself has hiking trails, boat rentals, fishing, disc golf, and probably some other activities so you could go and just hike with your dog if you don't want to pay the extra $2 or don't have the shot records with you. A tired Leni is a well behaved Leni, so we were very glad to find this dog park!

And now back to Colonial Williamsburg...Overall, the biggest challenge for us in Williamsburg was probably avoiding smoke. We spent a lot of time outside either walking between buildings or on tours or watching demonstrations. We encountered more than a few smokers in the historic area. I ended up keeping my mask out of my backpack and readily available at the first sign of a smoker. Sometimes it would just be in passing, but other times we did have to leave demos or tours because of smoking nearby or a smoker also watching or on the same tour. Even though my mask helps, the purpose is to give me time to get away from the trigger. It is not a perfect seal, so it doesn't mean I can all of a sudden stand next to a smoker as long as I am wearing it. We have just accepted that as part of my mast cell disease (and are so thankful that a whiff of smoke doesn't mean instant anaphylaxis anymore!), but it can be frustrating sometimes.

The other place we had an issue with smoke was at the shuttle stop. There is no designated smoking area, so we encountered people smoking right at the curb multiple times, at the visitor center stop especially. That was not cool. It meant we had to wait far enough away downwind that it wasn't an issue, but it also meant that riding the shuttle was potentially an issue. Thankfully we were there at the beginning of September which is considered "off season" for Williamsburg. Kids were just back to school, so summer vacations were over, and it was too early in the year for field trips. That meant the shuttles were mostly empty and we could sit as far away from the smoker as possible, but at busier times, this could have been more of an issue.

The other issue with specific scent triggers in Williamsburg was in almost every single shop. Soap, candles, ink, dye, etc. Every single shop (except the candy store) was selling some sort of scented product and often multiple different products all with their own smell. We realized this pretty early on our first day there. We weren't planning on buying anything anyway, so it wasn't a big deal for us. Nick did go in a couple of the shops that looked interesting, and I just stayed outside. There was a big outdoor market that had a few scented products I think, but since it was outside I could wander around it while wearing my mask without any issues.

View from just outside the patio at Chowning's Tavern
Unfortunately, one thing we didn't get a chance to experience was how they handled food allergies in any of the historic area taverns. Nick did eat at the back patio at Chowning's Tavern for lunch one day, but I didn't get anything. The outdoor patio was a grill menu vs. the more standard historical tavern menu inside. That meant it was cheaper and faster service, but the trade off is that you didn't get any food options that were "historically accurate." The patio itself was very shaded with plenty of picnic tables behind the tavern and was a nice place to sit a take a break from all the activity for a little bit. Supposedly most of the taverns are very accommodating to food allergies, but you should be aware that some do serve peanuts with beverages.

A restaurant outside the historic area but still in Williamsburg that gets incredible reviews for being super allergy friendly is Food for Thought. We were hoping to try it one day, but sadly the nasty masties decided to veto that plan...so sadly I don't have any personal experience to share, but it has gotten multiple fantastic reviews from the food allergy community for how they handle allergies (separate kitchen, well trained staff, very willing to customize dishes, etc). There is also a Food Lion very close to the historic area and the Govenor's Inn that was great for us to pick up safe food for me and extra snacks for Nick. I was pleasantly surprised to see the variety of allergy friendly products and brands they had, so that could be an option as well, especially if you have a refrigerator in your room.

And that was how we handled Williamsburg with the nasty masties and da poodle! We had a great time, and I hope that our experience can maybe be helpful for anyone else heading down that way.

Monday, September 11, 2017

September Shenanagins

With the start of fall (at least it my mind...once September hits summer is officially OVER), Nick and I decided to take Bokatopia on the road for some adventures! After an up and down summer of medical messes and work headaches, we were both looking forward to at least a short reprieve.

Yes, this is Leni with her head
on the wheelchair...silly dog!
Elizabeth and Rover, Me and Tracker
First up was crossing the seemingly endless state of PA to the far eastern side to visit my long time best friend outside Hershey, PA. She made the trek out to Ohio earlier this year, so we had been eagerly planning a time for Nick and me to make it out to visit her. There's a lot I could say about our friendship, but I'll just say that I've known Elizabeth as long as I can remember remembering anything. From playing Little House on the Prairie and creating "musical productions" (note the use of quotation marks =P) with our stuffed dogs Rover and Tracker to figuring out this whole adulting thing complete with army deployments, nasty masties, and all sorts of the craziness that life brings. I am so thankful to have a friend I can literally say I've known as long as I can remember.

We filled our time with lots of fun adventures including the requisite stop at the hometown coffee shop, getting to see Elizabeth's "office" aka life flight helicopter (and enjoying NOT being the patient!), picnicking and attempting to teach Leni to actually catch food in her mouth (with minimal success), puzzling, and watching Harry Potter and prison documentaries (and planning our future life as felons, but shhhh). Shout out to Nick for being a great sport and putting up with lots of laughing and best friend nonsense. I caught him shaking his head at least twice =)

After Best Friend Weekend #2, we left Elizabeth and headed toward my parent's, stopping along the way to visit more friends. Or family of friends who are now also friends. Good friends of ours moved to the other side of the world (literally) at the beginning of this year, so we filled in as kids for the day and visited the family farm that was conveniently located in between Elizabeth and my parent's.

Nick is riding shotgun in the red tractor
We got a tour of their incredible farm house, got to see more
chickens than I think I even knew were possible to have in one place, and watch some of the harvesting of corn. Nick even got to ride in one of the tractors that was collecting the chopped corn. It was super cool to see an actual working farm in action that was beyond just horses. Plus, it was so fun to meet and chat with our friends' family and feel like they weren't on the other side of the world. We love you guys!

Leni spent about 10 minutes in this
position after dropping a toy down in
between the couch and the end table.
After a brief overnight with my parents, we headed off again to what was supposed to be a surprise trip to Williamsburg. I say supposed to be a surprise because I did try to plan this trip without Nick knowing. We had talked about maybe getting to Williamsburg someday and since we have an anniversary coming up I thought it would be a fun surprise. And it probably would have been if I had been able to keep my mouth shut! Far from Nick somehow stumbling across hidden information, I literally blurted it out one evening when we were sitting watching a movie...that should give you an indication of how good I am at keeping secrets...but even with the surprise ruined, it was still a fun trip.


We had so much fun! Growing up in VA, Williamsburg is a field trip destination for pretty much every kid of elementary school age...so I had been before. But I honestly didn't remember much, so it was fun to go around with Nick who had not been there before. We spent 2 days visiting most of the historic area, and we could not have asked for better weather! We got to see what the different trades would have done during the Revolutionary Era, watch how civil cases were handled in the courtroom, went on a tour that addressed how the wealthy would have interacted with the enslaved people that were considered property at that time, and got an in depth tour of the Capitol of the Colonies and the steps that were taken that led up to the Revolutionary War.

We had a great time, but one of the best parts was not even what we did. It was how we did it. If you follow me on Instagram, you may have already seen my post about this. We didn't just get to spend 2 days exploring Williamsburg, but I was able to WALK around for both days. You don't really appreciate some things until they are gone and you realize how much you have taken for granted. Walking independently is one of those things for me. July 2015 was when I first started having issues with balance and coordination and muscle weakness...for the first time. That lasted 8 months before I finally started seeing some improvement in physical therapy. We thought it was due to a bad mast cell flare combined with chronic hypoglycemia, since starting Xolair and getting my sugars under better control seemed to make a huge difference. I had 7 months of working back up to being able to run/walk 6 miles at a time.

Then in October 2016, these issues started to make a come back...only this time I was still on Xolair and my sugars had been relatively stable for a few months. Now, 10 months later, I'm still spending hours in physical therapy working hard to combat the balance and coordination issues and muscle weakness. With no explanation for what is causing these issues, it can be discouraging to keep fighting what feels like a losing battle...especially when I'm faced with losing the ability to run (something I LOVE) and walk independently (so many of us take this for granted!) for the second time. At least the first time we thought we found the reason why. Now even my doctors don't have any ideas.

But anyway, the point of this was not to share what it is like to be dealing with these issues, but to share a HUGE victory. We brought my wheelchair with us fully expecting to need it based on how I have been handling any sort of distances lately. Instead, we never took it out of the car! It wasn't perfect. I almost fell a few times, and we had to take plenty of breaks especially when we were crossing back and forth through the historic area. BUT, between Leni providing her counterbalance and forward momentum tasks, and Nick keeping me vertical when I would struggle and being a steady hand across the uneven terrain, I was able to WALK. What. A. Gift.

Being able to walk around Williamsburg was a gift we didn't expect, but it's not the only thing we are praising God for right now. I started a new medication about 3 weeks ago, and we are actually starting to see some improvement in my GI symptoms. After 10 months of no answers and no real direction, to say I was feeling discouraged would have been an understatement. Unfortunately we still don't have any explanation for why I'm having the contrasting motility issues that I have (slow motility in my stomach, hyperactive motility in my intestines), but we have at least finally found something to address the relentless symptoms that were becoming more and more of an issue with each passing month. It's not perfect, and we still have some things to sort out with the dosage and long term safety of this medication, but it's a step (see what I did there???) in the right direction.

Plus, finally making progress toward managing my GI issues better (even without knowing what is causing things) means we are even moving in the direction of being able to see if I can transition off the IV meds back onto my oral and tube meds. That's probably still weeks to months down the road, but it's on the horizon now! Before starting this medication, none of us knew if I was looking at being stuck on IV meds and fluids long term. We were kind of out of options when we made the decision for me to have a central line and IV access at home, so we all knew it was needed, but it was FAR from what any of us wanted. Obviously I don't know what the next few weeks/months look like, so I'm not saying good-bye to being accessed 24/7 yet. But I am so thankful that it is becoming more of a real possibility and not just wishful thinking.

I know I say this often, but please know that I mean it every single time: Thank you so much for all your prayers. Just like there really aren't words to explain what it means to be able to walk independently, there really isn't a way to put words to what it means to know how many people are faithfully praying for me and my family all over this country and even in some other parts of the world. I hope that as you pray with us through some of the rougher times, you can also rejoice with us during these times of improvement and tangible hope. What a blessing to know that the one thing we know will never change is God's love for us, and I see that love acted out every day through your prayers and encouragement. Thank you. I only hope that my life can be a testimony of the incredible prayer warriors lifting up me and my family and ultimately of the power and goodness of our God even in the midst of some of the tough seasons of this life. I hope that you can also be encouraged with us as God is doing what He does best in being glorified and proving to be a faithful God no matter what is going on in our lives.

Thursday, August 24, 2017

Smashing the "Mast Cell Box" with a Hammer

One thing Dr. Afrin told us before we left my first appointment with him was that before he made any treatment recommendations, he needed lab work showing proof of a mast cell disease. His comment was that he didn't want to give me a life-changing diagnosis if he wasn't 100% sure. At the time I'm not sure I understood. In my mind it had been a long 8 years of progressing symptoms and searching for answers. I didn't think finally having a name to put to the conglomerate of systemic issues I had collected over the better part of a decade could possibly be as "life-changing" as he seemed to think. But as is the case with most things regarding mast cell disease, Dr. Afrin was right.

What happens the moment you get a diagnosis is that you get labeled. There are good things about that. Being able to have a name for the odd symptom patterns and going into first appointments with new doctors with an actually diagnosed condition and not just a mess of jumbled symptoms is not to be taken lightly, especially not in the rare disease community. But it also brings a new set of challenges.

ANY label means you begin to take on the identity of that label. I am female. I'm a wife. I'm closer to 30 than I am to 20 (although still further than Nick!). I'm (still...) a student. I am Jewish. I am a Christian. When I got married, even the name I go by changed from being associated with my parents to my husband. Labels are not necessarily bad. They not only help others understand who we are, but they also give us a way to understand ourselves better. When I got married, I stepped into a new role as a wife. I knew what that meant from seeing my parents and many couples I look up to, but it wasn't until I was there myself that I truly began understanding what it meant to be a wife.

That's kinda that same thing Dr. Afrin hints at when he waits to make a diagnosis until he has actual proof. It's one thing to be watching from the outside, feeling desperate for an explanation, and thinking that just getting that diagnosis of mast cell disease is the perfect answer. But then you get the label you've been after for so many years (even without knowing it in many cases), and all of a sudden new challenges appear.

It didn't take me too long after getting married to realize that no two marriages are the same and that my role as Nick's wife would not look like anyone else's role as their husband's wife. But that didn't keep me from trying to be what I thought was the "ideal wife." I wanted to have dinner ready for Nick when he got home from work. (Side note: Trying to cook dinner for your husband while incredibly nauseas is not a recommended activity and may result in bigger messes to clean up than just the dishes used for cooking.) I wanted to keep up with the inside cleaning so he could take care of the yard and cars. (Side note #2: Attempting to vacuum while dizzy and lightheaded will most likely end with passing out on the still un-vacuumed floor.) Every time I felt like I wasn't able to do something I thought a wife "should" do, I felt like I wasn't being a good-enough wife for Nick. It wasn't even competition with others that made me feel like I didn't measure up, it was being unable to attain unrealistic standards I set for myself.

Receiving a diagnosis, especially a rare disease diagnosis, is actually not all that different. All of a sudden we have a label and feel the need to "fit" that label. Only in many rare disease cases, there is no box to fit in or set list of absolute requirements...yet somehow we still try to create some sort of standard that we can point to and say "look, I fit in this box!" How can we not when we spend YEARS searching for answers and often being told nothing is wrong, we're just making things up, it's all in our head, etc.? There is a huge feeling of validation that comes with finally being given a diagnosis after many false alarms and false accusations over so many years. It doesn't feel like 3 simple words can possibly be any more life-changing than our symptoms already have been...but they can.

One of the reasons mast cell disease is so difficult to diagnosis is due to the systemic nature of the condition and the fact that no two patients are the same. I have friends with mast cell disease who cannot have anything by mouth, not even water. I have other friends with no food restrictions of any kind. I know some people who cannot tolerate hot climates and others who cannot tolerate cold. Some people with mast cell disease gain weight, while others fight to keep weight on. I have friends who are on oxygen 24/7 and others on tube feeds or IV nutrition. Some mast cell patients go through epipens like teachers go through pencils (shout-out to all my teacher friends heading back to school!), and others who have never had to use one. I could go on...everyone diagnosed with mast cell disease knows how diverse symptoms are.

Yet even knowing how complex mast cell disease can be, I think most of us still go through a sort of "box phase" to some degree. That's where, even knowing that no two cases of mast cell disease are the same, we somehow try to fit into a "mast cell box" created only by our own impressions of what living with mast cell disease *should* look like. Sometimes it happens immediately after being diagnosed when we finally feel validated that our symptoms really aren't all in our head like so many doctors tried to convince us of for so many years. Other times it may come later when we still feel no closer to answers than before having the diagnosis and we think that maybe it's because we're don't really have the right mast cell symptoms. Or maybe it comes when another doctor doesn't think mast cell diseases are legit and we feel like we're right back where we were before being diagnosed...and we think that maybe if we look more like we had mast cell disease, then maybe they would believe us. A lot of times, I think we have to go through varying degrees of all these situations.

What Dr. Afrin knows when he sees his mast cell patients is that the diagnosis is not the ending that many of us have been searching for over many years. It's really just the beginning of a new phase of life with a rare disease that currently has no FDA approved treatment options and has the potential to be life-threatening. A mast cell diagnosis is so far from the end of a long journey that most of us feel it should be. It's the beginning of a new set of challenges and attempting to fit into the "mast cell box" (that doesn't exist...) whether consciously or unknowingly.

I'd be lying if I said I didn't struggle at times with fitting into some "mast cell box" of my own creation. I certainly wondered if I didn't have the "right" symptoms when a local allergist completely discounted my mast cell diagnosis only a few months after being officially diagnosed by Dr. Afrin (which if you remember included actual abnormal lab results, not just speculation). When I have symptoms that don't appear to make sense (aka fit into that "mast cell box"), I question whether I'm being honest with myself and maybe things aren't really that bad. I feel like I'm on trial and trying to convince a jury of the truth when I end up in a new ER or with a new doctor while admitted and have to start from square one explaining my mast cell diagnosis and symptoms that landed me in the ER or hospital yet again.

So yes, at times, I have found myself trying to fit into some sort of imaginary mast cell box to prove to the medical world (and sometimes myself) that I'm NOT making things up, my mast cells ARE NOT playing nice, and I really do need help to be able to live normally. Why should we have to fight for that? That is why this whole "mast cell box" that doesn't exist sometimes feels like it does.

Because instead of being treated for a progressing rare disease, we've been told FOR YEARS we can't possibly have the symptoms we report, that our symptoms don't make sense and can't be real, and that we are liars. It takes time to move beyond being told by multiple doctors in often more than one state that we are (1) making things up entirely or (2) can't possibly be dealing with the symptoms we have. I had a neurologist at a world renown medical facility say to my face (with my mom in the room) that I wasn't sick enough to be in his office and to come back when I couldn't walk. Two years later I couldn't walk unassisted and I half felt like going back to him and saying that maybe if he had done something two years earlier I wouldn't have had to ever get to the point where I couldn't walk. That is why the "mast cell box" that doesn't exist is so very much real.

But even when we feel like we have no choice but to cling to that "mast cell box" during different seasons of life after being diagnosed, we learn that it doesn't have to be that way. It's been over 2.5 years since being diagnosed, and (most of the time) that mast cell box is long gone. Because I've realized that even if there was a box, it wouldn't matter. I'm not here to be the best mast cell patient I can be. I'm here to live the life that God has given me, mast cells and all. The box doesn't matter anymore because I'm not trying to figure out what it looks like to have a mast cell disease. Mast cell disease looks like me, and it's my goal to push the limits (in a good way!) of what life with mast cell disease can be.


I want to shatter any notion that being diagnosed with a rare disease has to look any sort of way to be legit. I want people to see a life blessed by God regardless of any health challenges. I don't want to go to my doctors and hear that I'm a "textbook" case of mast cell disease. I want other people to see that a life-changing diagnosis doesn't mean having to fit every point on some sort of chronic illness checklist, it just means now we know what we're up against. Life does change with a rare disease diagnosis, and I'd be lying if I said it would always be a walk in the park. But I want people to see that it doesn't have to be easy, I'm just looking to figure out what is possible.

Image result for yzma and kronk
As I was writing this post, I kept trying to find the right words to really express my true feelings about dealing with that "mast cell box." But then I realized someone already said it perfectly...In the words of Yzma from The Emperor's New Groove, " I'll put that box inside another box, and then I'll mail that box to myself, and when it arrives...I'll SMASH IT WITH A HAMMER! Or...to save on postage, I'll just POISON him!" Seriously, is that not THE BEST quote ever or what?? Okay, maybe there's nothing to poison, but it's just not complete without the ending =) Although...if anyone has any brilliant ideas on how to poison the nasty masties, I'm all ears...Let's get rid of that "mast cell box" for good.

Friday, August 18, 2017

Pharmacies vs. Kylene Round: ???

You know your specialty pharmacy has some issues when them actually doing their job correctly comes as a bit of a shock. I mean, they actually received an order, filled it, and shipped it without me holding their hand every step of the way??? Seriously people, this is big news! The irony is that this week I actually had time for them to screw up...of all the weeks they could actually get something right and it barely matters...go figure...

While this week my specialty pharmacy appears to have at least gotten something right, my online pharmacy has apparently decided to step up its game these past 2 weeks. So don't worry, I've still gotten my money's worth of unlimited calls...and texts...

My online pharmacy is where I fill most of my prescriptions. I get a 3 month supply each time I order, so it is great for the 2 months and 2 weeks where I don't have to talk to them. (Side note: my specialty pharmacy and online pharmacy are sister companies. In case one wasn't enough fun on its own...) Then we hit 2 weeks of fun and almost daily conversations until I finally receive all my meds and have another 10 weeks until I have to do it all over again.

How Leni feels about the pharmacy craziness...
This time started off about the same. It got a bit more confusing because on top of needing to refill 7 or 8 medications, some of the prescriptions had expired so we had to get a new script on file. Not a big deal, they just reach out to my doctors who update the order. Now, up until this past order, I was enrolled in their text alert system, meaaning I would get an automated text when my order had shipped. And that my friends, is where this story begins...

Monday of last week (so not 5 days ago, but 12 days ago), I started getting texts stating that my order had shipped. The first 5 or 6 were expected, but when it kept going I was a bit surprised. It seemed early for them to have already gotten renewed scripts for the couple of orders that had expired, but I wasn't going to complain! At least not until 57 texts later...

Yes, I am on more medications that I would like...but not 57...at that point you're taking meds to deal with side effects from meds that have other side effects from the meds that actually treat whatever condition is buried beneath those 57 medications...Anyway, after looking at the Rx # for each medication, it became pretty clear that NONE of those medications were mine (although, full disclosure, I stopped checking after 7 or 8...I suppose it's possible one of my was hidden somewhere in those 57 texts...). I thought about calling, but figured with that many texts, the pharmacy likely already knew of the issue. Plus, I really didn't feel like spending even more time on the phone with them...

Unfortunately, I ended up spending time on the phone with them Tuesday, Wednesday, and Thursday of last week as well Monday of this week. This was because those 57 texts ended up not being an isolated incident...I got another 63 texts on Tuesday, 73 on Wednesday, 84 on Thurdsay, and 72 on Friday. When I called on Tuesday I was told they removed my phone number from receiving notifications. On Wednesday I was told they would delete my phone number from their system entirely. On Thursday I was told they had no record of my number in their system anywhere. Friday I took the day off.

Sometimes you just have to hide your face and shake your
head...or, if you're Leni, rest your head on the spokes of a 
wheel...
After another 62 texts on Monday this week, I called them yet again. This time they at least admitted there was a *slight* glitch in their system. No kidding...They couldn't give me a time frame of when they expected this issue to be resolved, but said they were aware of the issue. Since calling them at this point is pretty pointless, I've just been keeping a running tally each day. This week we're up to 236 texts so far...since I've usually received them by now, I'm cautiously optimistic that maybe they finally fixed their *slight* glitch...

On top of the fun with my online pharmacy and the surprising accomplishment of my specialty pharmacy, it is only fitting that my 2 GI appointments of the past week and a half also ended with trialing a new medication which apparently could not be filled at any of the local pharmacies...Acme, Giant Eagle, Walmart, Costco, CVS, and Walgreens all said they couldn't fill the script...CVS even told me the medication didn't exist...

Thankfully I WAS able to find a place to get the script filled, and this weekend should be another fun round of how-will-this-medication-mess-with-the-nasty-masties. Actually, we're hopeful that I won't have any major issues with this new med. We know I tolerate other medications in the same class as this one, so the risk of anaphylaxis should at least be fairly low. The big questions are (1) how sleepy will this make me, and (2) will it actually work since, you know, that is kinda the whole reason I'm taking this med in the first place.

I saw 2 of my GI doctors within the past week and a half and both agree that this is probably the best option at this point. Treating my ongoing GI issues has only become trickier as I have two different forms of dysmotility in my gut with each being contraindicated for treatment for the other. We are hoping that this new medication will only impact my intestines (the intended target) since it will be going directly down Sherman (J tube) and by passing my stomach entirely. Plus, the receptors for this medication are in much higher concentration in the intestines than the stomach. So we are hopeful. Guess we'll find out this weekend!

That is if this pharmacy manages to fill this prescription properly the first time...with my track record with pharmacies...I'm not holding my breath...