Saturday, August 27, 2016

EpiPen Scandal

It's been all over the news lately, so I'm guessing you've probably at least heard of the recent EpiPen scandal. Yep, that's what I'm calling it because there really isn't a better word to use. According to the dictionary, scandal means "an action or event regarded as morally or legally wrong and causing general public outrage." I think this whole EpiPen situation sufficiently qualifies.

I am incredibly thankful and grateful that my insurance is such that these changes have not impacted me...yet...I am not naive enough to think that I am immune to insurance issues coming in the future (have you read any of my blog posts???) =P

But just because this issue is not affecting me personally right now, doesn't mean that I don't feel like I'm right at the heart of this issue. This is NOT just an issue of price gouging by out of control pharmaceutical companies. This is not the first time that all of a sudden there has been a huge spike in medication prices, but this time it's not just a medication to control symptoms or manage a chronic condition. This is literally a life saving medication.

(DISCLAIMER: I'm NOT at all insinuating that price spikes for any medication is okay. This is a huge issue that overall needs addressed.)

This is not a matter of, well if you don't take this medication then over time you'll start having worse symptoms. Or if you stop taking this medication you'll start having more debilitating symptoms that down the road could cause permanent damage.

When sudden anaphylaxis hits, you have minutes...if you're lucky...

This is the difference between a 6 year old who touched bean bags filled with peanut shells at school making it to the hospital alive or not.

It is the difference between a parent of a college student getting a call that their son died because he picked up the wrong cup at a party and talking to him on the phone the next day.

It is the difference between a daughter making it home from summer camp after being stung by a bee and her parents saying their last words to her that morning at drop off.


I'll be honest, it feels weird to say out loud (or write...out loud??) that my life was saved by my EpiPens 16 times last year. In the moment, I'm not thinking about that and it doesn't feel like that. It's not until after the fact that I think about what using my EpiPens actually means. My criteria for using my EpiPens is when I'm having trouble swallowing or breathing due to throat swelling. I'll deal with all sorts of GI cramping, dizziness, itching, hives, nausea, coughing, wheezing, sense of impending doom (it's real people!), etc. but once my throat starts swelling...game over.

We use my EpiPens as soon as my symptoms cross that invisible line from throat tightness and wheezing to actual swelling and closing. Thankfully so far, my symptoms have always resolved within minutes. But those 90-120 seconds of waiting for the epinephrine to kick in are TERRIFYING. Struggling to breathe, feeling my throat close, being unable to swallow because of the swelling...there is no other way to describe that...doesn't matter how many times it has happened...each time feels equally as scary.

And that's why it is UNACCEPTABLE for EpiPen prices to be skyrocketing like they are. This is not a vitamin or day-to-day management medication. This is literally life and death.

A parent should not have to decide whether her kids get lunch money for the semester or if she is going to restock the EpiPen for her child's peanut allergy. A college student should not be faced with buying books or EpiPens at the beginning of the semester. No one should be wondering when they use their EpiPen if that means their next reaction could be their last because they know there is no money to refill the prescription.

And what about those of us that may use these way more often than we would like? Thankfully that is not me so far this year, but it could be. It was last year...and I have friends who have use dozens in a very short period of time just to survive...How in the world do companies think we can possibly afford EpiPens at $600 each???

If we're going on the number of EpiPens I needed last year, that's over $2400 for just EpiPens alone...I don't know about you, but I don't know any chronically ill patients who can afford even 1 pack of EpiPens at $600 let alone what we might need to survive!!!

I don't like getting involved in issues like this. Honestly, I'm right there with you...tired of seeing these stories appearing on facebook...it could be so easy to keep scrolling...but I'm asking you to please don't...for me, for my friends, for parents with kids with allergies, for everyone who will be diagnosed with a life threatening allergy at some point in their lives (it could be you)...

It's been a couple of months since I have need to use an EpiPen, but I still never leave the house without them. Part of the challenge of mast cell disease is that I can get anaphylaxis from known triggers but also completely out of the blue from nothing. Thankfully, my medication protocol and the addition of Xolair has made a huge difference for me, but that doesn't mean I'll never need another EpiPen. Just 3 weeks ago I was in the ER for anaphylaxis...next time it might not be as convenient as just going down 2 floors from my doctor's office...next time I might not have the luxury of getting epinephrine from the nurses in the ER.

So far this hasn't increased my cost, but believe me when I say it's crossed my mind. We are already discussing and praying about possible out-of-pocket expenses for me to see a doctor who doesn't take insurance. What if we're also having to come up with money just we can refill my EpiPens??

It might not have raised my cost of EpiPens yet, but that doesn't mean this isn't hitting incredibly close to home. That's why I'm writing this blog post. When my friends' lives are on the line and could be mine in the future, it's not time to sit back and watch from the sidelines. This is why I speak up to raise awareness for mast cell disease and other chronic conditions that I live with. If those of us living with this every day aren't willing to speak up, how can we expect others to?

If I can ask one thing of you, it's this: Please share!

If all you do is read and share, THANK YOU! Help me give a glimpse of what it is like to be living with life threatening anaphylaxis and wondering how these CEOs can put a price on our lives. Help me raise awareness for what EpiPens mean to me and those of us who never leave home (or a room...I have one in every room of the house) without them. Help me make some noise about how this is not just a matter of increased prices for some medication...this is a life and death decision being made by people far too removed from those of us rely on EpiPens to save our lives.

Tuesday, August 23, 2016

(Thankful for) More New Doctors

I don't enjoy going to doctors. I don't like listing "professional patient" on my paperwork as my occupation. I don't like giving up half my blood for another round of testing. I don't like leaving my doctors with referrals to see even more doctors. And I certainly don't like leaving appointments with more questions than answers.

But lately I realized that while everything I listed above is still not on my favorite things list, there is something that I do like about these past few months of seeing doctors. Ready for it?


This was on my recent blood work orders from my doctor. Did you catch it?

If you are another professional patient (i.e. someone else with a rare disease/chronic illness) then maybe you see where I'm going with this. These are the diagnosis codes my doctor put on the blood work orders.

DIAGNOSIS CODES. Meaning there is an actual diagnosis. Not idiopathic, intractable (unknown cause with no effective treatment) nausea. Not unexplained allergy disorder (yep, had that one a few times). Not episodic syncope (passing out once in a while). ACTUAL DIAGNOSES.

Don't get me wrong, I'm not celebrating that the list of diagnoses here (and on other orders) is now longer than the number of schools I have attended (professional student status here). I AM celebrating the fact that what is going on in my body is no longer this unknown entity that we are fighting without any real direction of what to do.

Even more, though, I am celebrating the fact that I now have a team of doctors who are not only agreeing with these unusual diagnoses, but doing what they can to help me manage and treat them. I am so thankful that it has now been a couple of years that I have had a team of doctors who not only believe that something is wrong but are supporting me and behind me when I need them. I am so thankful for these diagnoses because it means that I'm no longer fighting to be heard or fighting for the doctors to take a step back and consider that rare doesn't mean never.

It's been a couple of years since I've seen a really bad doctor (i.e. GI doctor who told me I was depressed and starving myself), but that doesn't mean that I've forgotten what it feels like to not only be fight my body every day but to enter every appointment ready to fight for what I need just to get by. I am SO SO SO thankful to have entered a new season of rare disease life where I have doctors in place I can call with any concerns and get answers back along with suggestions to help me mange better. This is a huge blessing that I do not take lightly.

In the past week, I've seen 2 new doctors. I mentioned that I was seeing a new neurologist last week, and I saw a functional medicine doctor earlier this week. Both appointments went well, and I left feeling like I have another doctor on my team willing to do what they can to get me whatever improvement is possible.

My neurology appointment was with a new neurologist that I had been referred to by my previous neuro. I've been having weird ongoing neurological symptoms for a good bit of time now, and my regular neurologist felt that she really wasn't sure where to go next other than some invasive testing. We agreed that probably wasn't the best option for my body unless absolutely necessary, so she wanted me to see the neurologist who was the head of their autonomic department.

That appointment was last week. It went well. The doctor was very thorough with her questions and asked things I never would have even thought to bring up. She listened to what was going on and my concerns about what I felt were the most problematic issues. I tried to do my best to communicate the rapid progression of my symptoms last summer, the improvement at the beginning of this year, and where I am now along with the deficits I am still noticing. She asked about things I had not mentioned and was knowledgeable about some of the co-diagnoses that go along with the POTS I have already been diagnosed with. I left the appointment feeling like we had a good plan in place (EMG in 2 two weeks, repeat brain MRI some time in there, TONS of blood work), and that we will be able to make decisions of what to do next when I see her again.

When day to day life is filled with often unexplained symptoms and just trying to function to live as normally as possible, it is such a blessing to leave appointments feeling like we are making progress instead of getting nowhere or even frustrated that another doctor wouldn't listen.

Early this week I saw a functional medicine doctor. This was kind of a crap shoot as we really didn't know what to expect form this appointment...especially when the patient packet I had to fill out was 2/3 about diet...for someone on a feeding tube, that doesn't necessarily bode well =P BUT, I kept an open mind and figured that even if it was a complete joke I'd get a good blog post out of it! See, always thinking of you guys! #doitfortheblog

Sorry to say (oh the irony) that the appointment actually went well, so you'll just have to settle for a regular update rather than a play-by-play of how the craziness went down. The reason I went to this doctor was to see if we could get a more holistic view of everything that is going on and if there was any other approaches to treatment that could be tried. The doctor was a regular doctor (i.e. went to med school, did residencies) but focused on finding root causes for chronic conditions that seem to appear out of nowhere. He described himself as a forensic doctor in a way. He sees what is left (patient with chronic illness or just ongoing symptoms) and tries to identify what caused the body to go haywire. He didn't discount any of my current diagnoses (see photo above, that was from his blood work orders), but said that there was likely a trigger that set everything in motion. The idea behind functional medicine being that if we can figure out that root cause, it might give us another angle to treat/manage/address to potentially see more improvement.

So we'll see! He ran a bunch of blood work (side note, didn't break my current record that was set last week of 22 vials in one draw) and I have some other testing to maybe do. And we'll see. Most common words ever spoken by any patient with a chronic illness...we'll see...translation: HURRY UP AND WAIT.

So that's what's been up in Bokatopia lately! Doctors, blood work, testing, insurance problems (when is there not??)...being a professional patient is exhausting...like being on a never ending carousel, the same things over and over (testing, blood work, appointments)...I should be getting a promotion at some point, right?? =P In the next couple of weeks I'll be doing an EMG and brain MRI with my neurologist and potentially some other testing with the functional medicine doctor as well as my regularly scheduled Xolair.

I'm not sure I'll ever actually LIKE going to doctors. But at least where I'm at now, I can remember where I used to be and be so thankful to at least have that fight off my hands. My mast cells might not like to play fair, but it's nice to know I now have doctors willing to fight alongside me.

Tuesday, August 16, 2016

Xolair (Take 2...or 3), Neuro Appointment, and DAD!!!!

I think I mentioned a few weeks ago that we changed my injection schedule so I would get a 1/2 dose of my Xolair every 2 weeks instead of the full dose once a month. The goal with this was to reduce the side effects I would get after every injection, but hopefully still keep the benefit. Initially, it seemed to work well, I was able to recover from the side effects a couple of days sooner than when I received the full dose, plus I still seemed to hang on to the improvements we were seeing.

The problem, though, is that because I get a smaller dose each injection, there is less wiggle room in my 2 week schedule. It takes some careful planning to make sure I am able to get my injections every other week so the benefit doesn't fade while I'm waiting for the next dose. My doctor's office understands and does whatever they can to keep me on schedule, but sometimes even our best planing can't beat my mast cells...

Last Monday, my mast cells won =\


I'm heading to my doctor this morning for the Xolair injection I was supposed to get last Monday...After not feeling well last Sunday, I woke up Monday still not feeling great. I made it to my appointment and was sitting in the waiting area for the nurse to call me back when Leni alerted.

My sugar was fine, so I knew that meant a reaction was coming. I asked for some water so I could take my emergency medications and hope for the best. About 15 minutes later the nurse called me back, and she could tell I wasn't feeling so good. By that point, I was super dizzy, my stomach was cramping, and I was getting hot and flushed.

Because there is a risk of anaphylaxis from the the Xolair injections, my doctor decided that it was too risky to give them with me already reacting. My blood pressure was low, my temperature was high, and I was developing a bit of a barky cough so it was pretty clear that my body was already having some issues. My doctor suggested that I give it a few hours, then come back later that afternoon if things had settled down. The nurses asked if I was okay to leave, and I told them I thought so but I'd be back if things changed.

I left my doctor's office and immediately had to head to the bathroom to throw up since my stomach was cramping even worse. At that point, I wasn't sure if I was able to drive, so I sat down on a bench in the hallway to just rest for a minute and figure out what to do. And then a smoker walked by....

He wasn't even smoking right then, but the smell of smoke was so strong on his clothes...and that was enough of a trigger for my already reactive mast cells. I started having major trouble breathing along with all my other symptoms becoming more pronounced. I went back into my doctor's office and told them I was not okay.

I lay down in one of the exam rooms while they took my blood pressure and checked my heart rate and oxygen. My blood pressure, which had been low less than 30 minutes before, was now over 140/90 and my heart rate was almost double what it had been. Thankfully my O2 sats were holding okay, but my cough was getting worse and I was getting fewer breaks for breathing in between coughing fits. Plus my stomach was still cramping and my dizziness was getting worse, and my wonderful reaction tremors were starting.

They gave me a double breathing treatment and a shot of Benadryl on top of my emergency meds I had taken half an hour before. After I finished the breathing treatment, my doctor asked how I was feeling. I told him things were maybe a bit better even though I still felt my body was running the show. He agreed but said that better was one thing, and good was a whole different story. Since I was still reacting pretty good, my doctor and nurses had other patients to see, and we had done everything we could in the office, my doctor decided to send me to the ER for more treatment. Thankfully his office is just 2 floors above the ER =)

After a few hours in the ER, some IV medications, and another breathing treatment, I was recovered enough to head home. I called the office as I was leaving to see what we could do about my Xolair injection. We decided to try the next day assuming the majority of my symptoms were gone. If not, I would have to wait until the following week.

Spoiler alert: since I'm writing this post today, I did not get the injection last Tuesday...When I got to the office on Tuesday, my blood pressure was still low and my peak flows (measure of how well I'm breathing) were also low. Plus, I had hives where the ECG electrodes and IV had been in the ER the day before. Unfortunately, just not a good choice for me to get the Xolair while my body was still having issues.

So here I am today. I made it through the week, but not without some rough days and not getting out of the house for almost 5 days in a row. Sometimes it is so hard to be so dependent on medications just to be able to function somewhat "normally." One week...7 days...the difference between being able to eat small amounts of safe food and being unable to stay vertical long enough to make it to the bathroom or keep food in my stomach. Don't get me wrong, I am SO SO thankful to be getting the injections and to have Xolair as a treatment option. But that doesn't mean I don't get frustrated when something like this happens and not only do I have to deal with the initial reaction that happened on Monday, but I also deal with the fallout of being a week late for my Xolair...

But I made it! However rough this past week may have been, it's over. Now I just have to pray that my body cooperates so I'm able to get my injection this week. T-3 hours...

Anyway, on to other news. Tomorrow I have an appointment with a new neurologist. I'm nervous, no two ways about it. I always get nervous before seeing new doctors. Whether it's because I've been told way too many times it's all in my head or there's nothing wrong or I'm just tired of spending half my life in hospitals, I don't know. Whatever the reason, I always get a bit anxious leading up to new appointments...especially when we really need some answers out of them.

I'm being referred to this new doctor by my current neurologist, so the fact that my doctor knows me and my weird symptoms hopefully means that the new doctor will be able to read her notes and maybe have some ideas just going in before I've even seen her. I've had some on going coordination issues that aren't resolving like the balance and strength issues have, some new numbness and tingling, vision changes, and odd headache patterns...nothing at all serious, right??

Anyway, we are always praying that I will see the doctors I need to see and the appointments that I don't need won't get scheduled, so since I was able to get in with this doctor within 2 weeks of when they first called...I think that's a God thing. We are continuing to pray that we will get answers that we need and be able to rule things out that we do not need to consider. Stay tuned for an update after the appointment =)

The last thing going on this week is that MY DAD IS COMING TO VISIT!!!!! Can you tell I'm excited?!?! It's been a while since he has been able to come to Ohio (I think maybe since before we moved??) so I'm looking forward to being able to spend some time with him. Thankfully the weather has even cooled down a bit some maybe we'll get to enjoy some of the nice parks in the area, too =)

So that's my week, plus or minus a few cranky mast cells here and there, but what can you do?? In the words of Dory, "Just keep swimming, just keep swimming, just keep swimming swimming swimming!" And that's what we do, almost literally with the way the humidity has been the past week or so...Smile, find something to be thankful for, and praise God for who He is...Every. Day. None of those things are dependent on circumstances, so no matter how rough the day or dark your season of life, God is good. He loves you beyond anything you can imagine and wants you to know that, believe it, and walk in that truth.

Plus smiling is just pretty much amazing. How can you be upset when you're smiling? Try it...you'll start laughing, I promise =P "Smiling's my favorite!" (Name that movie!)


Thursday, August 11, 2016

Reasons Why Having a Feeding Tube is Good

My last post was about why it is important to me to raise awareness for Digestive Tract Paralysis (DTP). Sometimes awareness posts can be sobering or have a certain tone to them because we are trying to communicate the importance of getting the word out about chronic, life changing conditions. Not always a fun things to write about or read about.

So that's what this post is about! Fun, that is =)

If you didn't read the last post, you can read it here. This post is going off a bit of what I wrote there. I talked about why I'm thankful for my feeding tube (Herman) even though it was not anything I ever wanted. This post, though, is going to go one step further...get ready!

The title kinda gives it away, but believe it or not, there are actually things I like about Herman. Not just that I'm thankful for him, but actual things that are perks of having a feeding tube. I know, crazy right? Keep reading to find out why it can be cool to have a feeding tube =P
  • I get more to accessorize!
So I'm sure anyone with daughters knows how important accessories are. Glasses (even if their eyesight is perfect), hair ties/barrettes/bows, bracelets, necklaces, etc. Now I was never super girly, so other than my glasses (that I had for actual vision issues) accessories were not a priority. Until about a year and a half ago...One thing that happens when a feeding tube is placed, is that you get a hole poked somewhere in your abdomen. For me, mine leads into my stomach. I have bumpers on the inside and outside holding my tube in place. The external bumper is rubber and if you imagine what it feels like to have rubber rubbing on your skin 24/7, you get an idea of what having Herman can feel like. To prevent irritation of the skin around the stoma (hole that the tube goes in), something has to be put in between the bumper and the skin. Thankfully, someone with crafting ability (i.e. NOT me =P) came up with the idea that fabric pads are WAY cuter than plain split gauze. That means that every day, I get the choice of almost 20 tube pads, each with a different design. Olympic soccer team playing New Zealand...soccer tube pad! Indians going for their 14th straight win...baseball tube pad! Seeing a new doctor...zebra tube pad! Holiday...there's a tube pad for that! See how this can be fun?? I get to choose a new pad every day that fits in with what is going on in my life that day. How is that not a perk?

  • No more tasting nasty medications!
Ever have to take a medication and the very taste of it is almost worse than the reason your taking it? Nyquil, I'm talking about you...Have no fear, Herman is here! Thanks to having tube access to both my stomach and intestines, I no longer have to taste my medications but can just put them down my tube. When I first was prescribed my nausea med in liquid form, my pharmacist was warning me about how bad it tastes and that most people have to chase it with gatorade or something just to tolerate it (which seems counter-productive if you're nauseas...). I was happy to inform him that wouldn't be a problem for me since I had Herman. #feedingtubeforthewin And just in case you were wondering, I have since confirmed that yes, my nausea medication is that bad...
  • Never not having enough space to carry what you need!
How many times have you gotten ready to go somewhere and realized you were bringing just enough that it wouldn't fit in your pockets? Not quite enough to warrant an actual bag, but too much to just slip in a couple pockets. Not the case with Herman! Thanks to continuous feeds, I'm never without my backpack containing my formula and pump (and emergency medications, medical information, glucose meter, emergency sugar, EpiPens, you get the picture...). Get a bunch of papers at the doctor and don't know what to do with them? No problem! Don't know what to do with your wallet and phone when you have no pockets? I've got you covered! Yes, it does get old sometimes to always have a bag with me, but just think of all the things I can bring =)

  • No more throwing up!
Okay, full disclosure, I do still throw up, but it's WAY less than it used to be. Having access to my stomach means that when I'm super nauseas, sometimes I can vent out whatever is in my stomach. Basically that means that I open the port the leads my stomach and either let it drain out on its own or use a syringe to help suction out the contents. Why is this a good thing? When you throw up a lot, there is a risk of damage to the esophagus and mouth/teeth/etc. from the stomach acid that is repeatedly being forced out. Just think back to high school chemistry and learning about acids and their corrosive ability...yep, same stuff in our bodies. Now, this won't cause major damage with the occasional flu or every now and again vomiting episodes, but when it becomes a regularly scheduled event on your weekly agenda...that's when damage can occur. Thanks to Herman, though, I can often avoid actually throwing up by "throwing up" out my feeding tube. No, this is not one of the more glamorous parts of having a feeding tube...sometimes the contents of my stomach are so rancid that just the smell of draining it out makes me even more nauseas (sorry if that's TMI, but this is real life people =P). BUT, it still helps keep me from actually vomiting it back up by relieving some of the pressure through allowing it to come out of my tube. Fun? Not particularly...but a perk of having a feeding tube for sure.
  • When I do ab work, I feel hard core!
Seriously, if you've ever had abdominal surgery, you know that there are seriously A LOT of muscles in your stomach region...and you use them FOR EVERYTHING. Driving, every time you have to switch from the gas to the break. Laughing, major ab workout. Turning to see who walked up behind you, getting out of bed, going to the bathroom, you get the picture...For weeks after having Herman placed, any tensing of my stomach muscles caused pain at first, then tapered to discomfort. Eventually, it got to the point where I don't even feel it. And then I started doing ab work again...Oh man...Basically when you get a feeding tube, YOU GET A HOLE IN YOUR STOMACH....literally. Some of the muscles now have a tube in the middle...so they are not connected to their other half. That means the muscles above and below the tube have to work harder to maintain the integrity of the abdominal muscles. Just imagine you're on a suspension bridge and there is a hole...you better hope the ropes on the sides are strong enough to compensate for the missing pieces. Okay, maybe not the best example, but hopefully you get the picture. I was so proud of my core strength before getting my feeding tube, and I felt that it was gone after surgery. But after it healed completely, I was able to get back to ab work. Now I feel hard core because I can still do planks and core work even with a hole in my stomach!

I hope you enjoyed reading a bit about what I consider #feedingtubeperks. Don't get me wrong, I am by no means promoting feeding tubes...TRUST ME! No feeding tube will forever trump having Herman, even with all these so-called "perks." I wrote this post as a joke =P I mean, seriously, good things about living with a feeding tube?? So yes, I'm joking when I say #feedingtubeperks...being tube free will ALWAYS be better. But my reality is that Herman is a fixture in my life right now. And I have many friends who are also living, surviving, and thriving with feeding tubes.

A couple of days ago I wrote about Digestive Tract Paralysis. To put it bluntly, living with any form of GI motility issues STINKS! Both literally and figuratively...Just like the rest of my life with mast cell disease wasn't a choice, neither is this...But just like I get to choose how I react to my mast cell disease, I get to choose how I'm going to live with Herman. No, I never would have chosen this road for myself, but I'm here now. So instead of hiding my tube and being ashamed that my body doesn't work "normally," I'm going to find the good...whatever that may look like.

Herman wasn't my choice. BUT, Joy is a choice. Smiling every day is a choice. Finding good in everything is a choice. And I'm choosing to embrace whatever #feedingtubeperks I can while Herman and I continue our relationship for the foreseeable future.

So yes, I may eat differently than you do...but do you have cool accessories on your stomach coordinated to every holiday, event, favorite color, animal, etc.??? Didn't think so =P

Tuesday, August 9, 2016

DTP Awareness Month!

Sometimes it's hard for me to come up with blog topics when they aren't spontaneous. Throughout the year, there are specific months or weeks or days dedicated to raising awareness for specific conditions that I may be living with, and I want to do my part to help raise awareness. But when it feels forced, it is harder for me to come up with a blog post that feels like something I want to write.

August is Digestive Tract Paralysis (DTP) Month. I know, it's a mouthful (no pun intended =P). I was trying to figure out what I wanted to write knowing I had a month to come up with a topic when it kind of fell in my lap.

As most of you know, I live with gastrointestinal motility issues (say that 5 times fast) from my mast cell disease. The main issue that I have is called gastroparesis which literally translates to stomach paralysis. That means that my stomach does not empty what I eat in a timely manner. Instead, the food sits in my stomach for hours (or longer...) beyond what it is supposed to. If you are interested in why that is a problem, keep reading...

In northeast Ohio, it's a hot day when the outdoor temperature reaches over 90F (it'd be a REALLY rough day if the indoor temperature was that hot too =P). If you're doing anything outside in that kind of weather, you're for sure making sure your food is not left sitting out in the hot sun. Food + 90F = rotting nastiness...following so far? Now imagine that this same food is mashed together and left to sit in even hotter weather, how about around 98.6F? See where I'm going with this?

I know it's not a great thing to think about, but for the purposes of raising awareness, unfortunately, that's reality for thousands of us living with some form of DTP. There are days that I'll wake up in the morning with what we call "rancid burps" because I literally have food from the previous day rotting in my stomach. Remember that food and body temperature isn't such a nice combination? Now add stomach acid to the mix...I'll leave that up to your imagination =P

Why am I painting this picture?

Before I answer that, let me tell you about an encounter I had with a woman in the grocery store a week or so ago.

I had gone into the store to pick up some miscellaneous groceries, mostly for Nick but a few things for me, too. I was in the check out lane with my basket when a woman got in line behind me. As I was putting my stuff on the belt, I snagged Herman (my feeding tube) on the basket. It took me a minute to untangle myself. The woman behind me was watching, and I could feel her staring at me as I finished putting my groceries on the belt.

Here's what Herman (III) looks like!
She asked me what the tube was and I told her that it was my feeding tube. She asked what that meant and I briefly explained that I had a condition called mast cell disease that at times causes me to go into anaphylaxis from digestion plus caused my stomach not to work properly and the feeding tube allowed me to get nutrition without causing major reactions. She looked at the food on the belt and asked if that was mine. I replied that most of it was for my husband but that I could eat some things on good days.

There was a pause in the conversation, and I thought we were done talking so I turned back toward the cashier. Then she stated that she didn't know how I could not eat and if that was her she would just die and there was no way she could ever live with a feeding tube. I just smiled and shrugged (not so good at witty comments in person), but here is what I wanted to say:

You're right. You would die if you couldn't eat. That's the point.

Why did I spend the first part of this blog explaining what gastroparesis is like? Because I want people reading this blog to understand what it looks like when our bodies decide that something so essential to survival (eating) is not going to work. The reality is that yes, you would die if you could not eat.

I understand when people are caught off guard when they realize that I don't eat normally. Food is such a central part of our social culture that when you take that away, it's weird. I know that. But for someone to tell me to my face that there was no way she could live with a feeding tube, as if Herman is somehow worse than the alternative...

Don't get me wrong, I wish I didn't need Herman. I would LOVE to be able to eat normally and not have to worry about anaphylaxis or severe pain or throwing up. But hear me when I say that I am thankful for Herman. Without my feeding tube, I would not be where I am today.

I hear that I don't look sick a lot and even told that I look too healthy to need a feeding tube. Tell me how that makes sense?? I look healthy BECAUSE of my feeding tube. Before Herman it was always a battle to keep my weight from bottoming out, I was malnourished, my body was not able to function properly because I was unable to get the nutrition I needed, plus add in the potential for anaphylaxis with eating...I was NOT in a good place.

Herman has been one of the best decisions we have made for my health. He has helped stabilize my weight so one day of puking my guts out doesn't immediately drop my weight to dangerous levels. I can still get nutrition even on bad days because I run my feeds into my intestines and skip my stomach altogether. He has given me a way to take my medications even when I'm puking my guts out and saved us numerous ER trips. When I'm super nauseas, sometimes I can vent or "throw up out my tube" which has likely saved my esophagus and teeth from damage. I have been able to build up my strength so my body is able to fight off reactions and infections better than when it was just fighting to survive.

I never wanted a feeding tube, but know I'm being completely honest when I say that I am glad to have Herman. That doesn't mean that I don't have nights I want to rip him out and throw him across the room. It doesn't mean I don't miss the days of being able to lie on my stomach and not have 12" of tubing hanging off my body. And it definitely doesn't mean that I don't miss being able to go out for a "normal" date night with Nick to dinner and a movie or celebrate birthdays and holidays "normally."

But it does mean that I am thankful for the life I have because of Herman. I can be active because of him. I am running again because of him. I have avoided countless ER trips because of him. I am making progress against mast cell disease because of him. I am alive because of him.

Raising awareness is important to me because of situations just like the one I had at the grocery store with the woman who didn't understand. Yes, it was awkward to hear she wouldn't want to live with the very thing keeping me alive, but I'm not upset with her. The first time I looked in the mirror after having my NJ tube placed was the first time I had seen a feeding tube on anyone other than a tiny baby.


That is why raising awareness is so important. So that we don't have to feel awkward and uncomfortable about the very things that are keeping us alive. Plus, her reaction, unfortunately, wasn't that far off from reactions I've had from medical professionals...yeah, you wouldn't believe how many doctors and nurses have never seen a "healthy looking" adult with a feeding tube...

Awareness is so important because there I times I am desperate for treatment I can't get at home, but a doctor who doesn't know what to do is hesitant to treat me for fear of messing something up (as if I don't already have enough mess inside me...come on, people, just try something...I promise I won't break...and even if I do, I'm falling apart anyway...).

Sometimes it can be hard to come up with topics for these scheduled awareness months or weeks or days...but the reason I keep writing even when it's tough is because this example I just wrote about is not an isolated incident. It's the most recent (and the only one to be told to my face someone would rather be dead than have a tube), but these sort of misunderstandings are all too common for those of us living our lives in the alternate reality known as mast cell disease or rare disease or chronic illness.

So thank you for reading! Thank you for being a part of helping me raise awareness about some of these tough-to-talk-about topics like paralyzed organs and rotting food. And most of all, THANK YOU, for never making me feel uncomfortable for my feeding tubes. I have the greatest family and friends ever. Herman and I (and Nick) are so grateful that you all are a part of this crazy life we're living =)

Sunday, August 7, 2016

Flying with a Service Dog

I realized when I wrote my post about traveling with special needs from our trip to Texas that while I did mention a few things about traveling with Leni, I didn't really go into detail about what traveling is like with a service dog. I was going to add more to the last post, but then I realized it was already bordering on being longer than any book I ever read for college and decided a separate post might be better.

Plus, since today is the first day of International Assistance Dog Week, consider this my attempt at yet another planned post =) First off, packing!

As I mentioned in the previous post, I pack Leni's supplies in my medical bag. These supplies include food (individually portioned into ziplock bags for easy use), collapsible bowls, boots, cooling vest (or coat depending on the season), treats, toys (bone and squeaky toy), travel bed, and for our Texas trip, a bow for the wedding. I like to individually portion out her food because it is super easy to just grab a bag and pour it into a bowl at meal times. Plus, it takes up less space than a larger bin.

We flew out on an early morning flight. That was Leni's first flight, so we had no idea how she would react to take off and landing. We figured she would be okay once we leveled off since that feels about the same as riding a bus or train and we've done those multiple times. In order to minimize the chance for an oopsie on the flight, we decided to wait to feed her until we landed in Austin. We also limited her water so she wouldn't need to go to the bathroom since we couldn't take her out until we got to Texas.

When we got to the airport, we first had to go through security. I wasn't sure how this would work since I cannot go through the scanners myself. It ended up that Nick took her through the scanners while I was screened separately. TSA had me remove her vest and leash and send those through the scanners with our bags. Nick put Leni in a sit-stay next to him, then TSA had him walk through the scanner first by himself. After he was cleared, TSA had him call Leni through. Once they were both good to go, Nick could put her vest and leash back on while I was getting screened. Service dog handlers, make sure your dogs have a good stay with lots of distractions around! Although I will say that TSA was super nice and loved Leni!

After going through security, we made our way to our gate. As I said in the previous post, I go to the person at the desk and request pre-boarding. This gives us extra time to get situated and lets us get on first so we are not caught up in the boarding craziness with a super cute, snuggley, everyone-wants-to-pet poodle. Since we were flying Southwest, this also allowed us to get the bulkhead seats because they have open seating based on boarding number. (Other airlines you will have to call after booking your tickets to request bulkhead if you want it.)

For all my worry and preparation to make sure the flight wasn't scary for her, take off was about as eventful as my bad days. Translation: She did nothing...She might have picked up her head at one point during take off, but that was the extent of it. Same reaction at landing. She picked up her head at touch down, but other than that, was about as stressed as a sloth (they never seem stressed, right?). I had lots of treats all ready, a bone to keep her occupied, snuggles if she needed them...and nothing...she was great! What a good service dog =)


Also, fun fact, dogs have different ear anatomy than we do. What that means, is they get to avoid the oh-so-fun ear popping that happens during changes in altitude. So really the only indication that anything was happening was the noise on the plane and maybe how it felt, but apparently that wasn't even anything to get excited about anyway.

Once we landed, we waited until the plane was mostly empty before we got off. It's just easier to let Leni get up and stretch and not feel like we have to rush. After we got off the plane, she got to eat and drink while we were waiting for our bags at baggage claim. And of course, bathroom time as soon as we got out of the airport.

Pretty much the same drill heading home except for one MAJOR mistake on my part. Our return flight wasn't until 11:20 am instead of zero dark thirty. We still decided that it would be better not to give her a normal meal, but just light snacks instead of breakfast and still limit her water. Even though she was so good on Thursday, we still wanted to make sure we had no oopsies. I had planned to wait to take her to the bathroom until just before we entered the airport, knowing she could hold it for our 5-6 hour travel time. Once we landed back in Ohio, she'd get her dinner with a bit extra and be good to go. Sounds like a good plan, right??

We thought so, too...until I forgot the most important part of our plan...the whole take-her-to-the-bathroom-BEFORE-entering-the-airport part...yeah, MAJOR oops on my part! Can I just say, I felt HORRIBLE when I realized what had happened about 15 minutes before we boarded our first flight! Unfortunately, in both the Austin and Atlanta airports, the service dog relief areas are outside the airports before you go through security. We didn't have enough time to go back out, and our layover was too short in Atlanta to try, too. Leni was such a trooper! She had to wait almost 20 hours before she had the chance to pee after my awful forgetfulness. Don't worry, she was just fine and had no lasting issues. She was back to her goofy self (not that she ever lost it) as soon as we got home and was happy to see her Bonky and hedgehogs (sadly not real, just squeaky or at least were at some point).


Flying with Leni wasn't nearly as challenging as I expected, and if anything, having a bit extra leg space in the bulkhead seats was a nice plus! Nick (at 6'4") was especially glad to have some extra foot space...even if he did have to share some of it with Leni!

I hope this helps anyone else preparing to travel with a service dog or encourage anyone who felt that traveling with a service dog is just too overwhelming. Like I've said before, no, it's not as easy as just packing and going. But let's be real, if we have service dogs, what part of our lives is ever that simple? Having a service dog doesn't mean that traveling is off the table, just that is takes a bit more planning and preparation ahead of time.

Thursday, August 4, 2016

We Need #CuresNow and the #OPENAct

I usually do my best to stay out of politics, but every so often something comes up that I can't let go by. And right now, one of those somethings is makings its ways through Congress. The 21st Century Cures Act has been passed by the House and will up for consideration in the Senate in September. This has the potential to be a game-changer when it comes to health legislation.

The 21st Century Cures Act will put into practice new legislation and infrastructure to continue funding medical research focused on discovering treatments and cures. Institutes, such as the National Institutes of Health, that are dedicated to being on the forefront of research and medical advancement cannot function without funding. This act will help guarantee funding for these research facilities that place a huge role in why the USA is where the world comes for treatment. This act does not specifically fund rare disease research, but provides general funding for healthcare and biomedical science to guarantee the resources needed for researchers to continue making advances in this field and discovering new breakthroughs.

Is there anyone who hasn't known someone with cancer? What about Alzheimer's or Parkinson's or diabetes? The 21st Century Cures Act even addresses new issues, such as the Zika virus, to provide funding that allows researchers to stay at the forefront of what is happening in the medical field and to keep working to find better treatments, and eventually cures. Health can change so quickly...this might not seem like it is relevant for you today, but I can tell you that I never expected it to matter to me either. In 2, 5, 10 years when someone you know is facing a tough diagnosis, you will want to know that you have hope for treatment and maybe even a cure thanks to the 21st Century Cures Act.

So I hope you see why this is important. But for me, it goes one step further.

The OPEN Act is also up for consideration. This specifically targets rare diseases and the ways they are treated and managed. This act provides incentives to large pharmaceutical companies to allow for off-label use of currently on-label medications to treat rare diseases with no currently approved treatment options. 

In English, that means that patients living with a rare disease that has no FDA approved treatments, may get approval to use medications already on the market for other conditions. Many times medications that are FDA approved for certain issues can also work for other conditions even if they are not specifically approved for them. 

It may seem complicated, and again, not relevant, but remember that 1 in 10 Americans are living with a rare disease. You probably know more people than you think who are living with one of 7000 identified rare diseases. Out of these, 95% have ZERO FDA approved treatment options. Mast cell disease is a part of that 95%.


Yes, there are medications that we can take to manage symptoms. HOWEVER, because nothing is specifically FDA approved for mast cell disease it can either be incredibly expensive because it is denied by insurance (which usually means it isn't really an option because what rare disease patient has thousands of dollars just lying around) or if it does happen to get approved, it takes months/years to get that approval. In the mean time, we're left trying to figure things out for ourselves and wondering how much long until we're out of options. 

The OPEN Act would give rare disease patients another lifeline when nothing is working. Instead of being told that the only available options have been exhausted and there is nothing left, there is at least the hope that maybe there is still something that could help. It might not provide cures, but it at least gives the potential of treatment to give more time until cures are found. 

I am thankful that right now in the treatment of my mast cell disease, we still have things to try. We are making progress with the Xolair (which took 5 months to get approval) and getting better at tweaking my medications to continue improving my symptoms. But it's not perfect, and there are days when I feel like nothing is working...and I wonder what could happen if I were to get to the end of what is currently available. I have friends who are there now. 


Friends who are faced with the choice of anaphylaxis from IV nutrition or anaphylaxis from tube feeds...Friends who react to the only medications available to manage their symptoms because they have been stuck waiting for insurance approvals for 7 months...Friends unable to get any treatments beyond over the counter medications because insurance won't approve anything for a condition they don't have codes for...and billing codes for mast cell diseases won't be available until October 2016...

It's crunch time. Not just for those of us with rare diseases waiting for access to treatments and insurance approvals. It's crunch time for the 21st Century Cures Act and the OPEN Act. Please help raise awareness for the need for medical research to benefit all healthcare as well as provisions to allow additional options for rare disease patients. We have the month of August to get the word out. 

We need #CuresNow! The #OPENAct matters because we understand that medical advances don't happen overnight and finding a cure doesn't mean anything if the patients who need it can't get treatment now.


Monday, August 1, 2016

Leni Caused a Horrible, Rotten, No Good, Very Bad Day

Not quite what you would expect from a service dog is it?

Yes, it's true. Thanks to Leni, I had a horrible, rotten, no good, very bad day...and ended up in the ER...no, just because I went to the ER doesn't necessarily make it a horrible, rotten, you get the picture day...

So what happened to cause such an adorable, snuggly, well-behaved poodle to result in an afternoon/evening spent in our favorite local establishment??

Don't let the cuteness fool you...
Let me first set the stage.

The day in question was a Friday, but it really started the day before. I had been really sick that Thursday. Sick to the point where I barely made it out of bed, couldn't walk to the bathroom without blacking out, couldn't focus my eyes or feel my limbs for part of the day, emptied pretty much everything from my insides...you get the picture =P We know it's a rough day when Nick has to call the couple we live with to have them check on me because I missed a call from him (I was asleep) and he was worried. Let's just say that we narrowly escaped a date night...at least we did that day...

Fast forward to the next morning. I woke up actually feeling pretty decent. I made it out of bed, got a bike ride in, and even made it downstairs! And that's where the excitement began...

As usual, I let the dogs out when I came downstairs. All 3 dogs were (note the past tense here...) on electric collars, so we would just opened the door and let them run out. I went into the kitchen, but all of the sudden, the dogs were gone. Apparently, they took off after what was likely a bunny. Since we live in front of a ravine, as soon as the dogs get below the level of the electric fence, it won't zap them...want to guess what happened here???

Now, before I continue, let me explain something about Leni (and probably poodles in general). She has incredible tunnel vision. This quality is part of what makes her a fantastic service dog. When she knows she is working, she is in work mode and knows how to behave. HOWEVER, as you may have figured out by now, this quality can also be her Achilles' heel...when she sets her mind on something, whatever it may be, it can be VERY difficult to distract her.

Back to the story...my guess is you know where this is going...

At this point, I'll let you know that out of the 3 dogs, Bonk is the one who came out as the favorite. He came right back in when we called. Stewie (beagle who belongs to the couple we live with) and Leni on the other hand, did nothing to stay in our good graces...or in sight for that matter...

Both dogs apparently picked up a scent and took off. Like I said, we live in front of a ravine, so they were down in the creek and out of sight before I got back from grabbing a pair of shoes. Side note: crocs do not make ideal wilderness trekking shoes.

Thankfully, they did eventually make their way back into sight. Unfortunately, while Stewie slowly returned to the house, Leni did not. Whether it was because she couldn't figure out how to get back across the creek or because she was still focused on chasing whatever scent they had gone after, I don't know. Regardless of WHY, it meant that I had to chase her down into the ravine, across the creek, and back up the other side to finally catch her.

Now, there are a few things I should mention. First, this happened during the wonderful heat wave that we had a week or so ago. It was hot and humid for anyone, let alone someone with mast cell disease who has a body that doesn't understand how to regulate temperature. Plus heat + humidity + running up and down a ravine + mast cells = asthma-like breathing issues. At this point I'm overheating and having trouble breathing...now factor in panicking that Leni is gone and running through thick brush and blazing my own trail...add in the adrenaline this sort of situation triggers and bleeding from numerous cuts all over my legs...sounds like prime breeding grounds for a mast cell party!

If it's any consolation, as soon as I caught Leni, she started alerting...yeah, I didn't think so either...

I ended up catching her on the other side of the ravine behind houses opposite where we live. I knew that in the midst of my reaction, there was no way I was going to make it back down and up the ravine with Leni. Thankfully, we were picked up by a friend who happened to be over during all the excitement and got in her car to see if she could find us. Once we got back to the house, I spent the next few hours drugging myself with my emergency medications, including multiple breathing treatments, in an effort to avoid the ER (spoiler alert: it was all to no avail) and picking hundreds of burrs off of Leni.

Unfortunately, sometimes my at home meds just aren't quite enough. A few hours later when my breathing wasn't improving, I was driven to ER for some IV medications and additional breathing treatments. Don't worry, Nick met us there a bit later to make it a true date night (afternoon).

So, thanks to Leni's escapades through the ravine, I got to spend the afternoon of what started as and could have been a good day in the ER instead....Thanks a lot, Bean...

But there's good in everything, right? At least we reaffirmed that I'm not allergic to poison ivy...go figure =P