Monday, December 11, 2017

When What You Think is Normal Isn't

Growing up in northern Virginia I thought it was normal for school to be cancelled when there were was a forecast of a "big" snow storm even if no flakes had actually fallen yet. I still get a laugh about remembering sitting at home with school cancelled, waiting for it to start snowing and nothing ever happening. Yes, kids in VA occasionally get snow days without snow actually having to fall. You can imagine how I was in for a bit of a shock when I moved to Ohio and 2 feet of snow actually on the ground didn't even mean a delay for the schools.

It's amazing what we assume is normal when we have nothing to compare it to.

For years I lived with what I call blacking out without ever realizing (1) not all doctors knew what I meant when I said that, because (2) it's not exactly normal. I call it blacking out when I completely lose my vision (i.e. everything goes black) but am fully conscious and often am able to continue doing whatever I happen to be doing, just without being able to see. It can take between 30 seconds to 2-3 minutes for my vision to come back after one of my blacking out episodes. At this point, I'm pretty good at working through them and most of the time people probably can't even tell I can't see unless I say something. It often comes when going from lying down to standing or sitting to standing, but it will also happen if I've been standing too long or sometimes what feels like completely randomly. I've been dealing with this for as long as I can remember. Even as a kid. I never said anything because I thought it was normal.

When I first started having symptoms we couldn't explain, it took years and dozen of doctors before we were finally moving in the right direction. I remember the day we first felt like we were being pointed toward what might actually be going on. My mom and I had gone to see my PCP for a follow-up after some sort of testing, that I can't remember. We were still trying to piece things together, and my PCP was great at never discounting my symptoms or assuming I was making things up. He would help us troubleshoot and give us referrals he hoped would help. That appointment I happened to mention that I was blacking out "more than usual" but wasn't sure if that was even worth bringing up. He looked at my mom, then looked back at me and asked how much was more than usual. I told him it used to be 6-8 times a day, but was now over a dozen times a day. Then he asked me what I meant by blacking out. That is when I discovered that what I was experiencing was not actually normal.

But how are we supposed to know what is normal if we've never known what that is?

Recently I had to switch infusion companies because my insurance changed. As is common with these type of transitions, some of my supplies came from different suppliers. I didn't think anything of it until I realized I had done a full shipment's worth of infusions and NOT had any of my "normal" infusion side effects. I was used to experiencing swelling, headaches, itching, muscle aches, and overall malaise during and after running my IV fluids. Even when I've been in the hospital or in the ER, the symptoms were there, so I assumed it was normal and thought nothing of it. I'm living with a rare disease and have 2 feeding tubes and an implanted port, pain and discomfort is a reality when there are foreign objects in my body and I'm alive because of countless medications, an unfortunate reality, but one nonetheless. That means that I'm used to just "sucking it up" and dealing with a certain level of discomfort because that's just life. Except when it's not...

After doing some research and talking with some other people with mast cell disease, it appears that what I was feeling from the IV fluids was not simply side effects but actually a reaction to the brand of plastic used in the bags. My new infusion company uses a different brand which, come to find out, is free of a few specific chemicals that often cause reactions in people with mast cell disease very similar to what I was experiencing. Most of the hospitals use the same brand I had with my previous company, so it didn't matter where I was getting them, I was always reacting. Just the fact that I have discovered that running my infusions does not actually have to mean side effects is amazing! But how was I supposed to know that what I assumed were "normal" side effects were not actually normal at all?

It's tough because I try hard not to complain. I truly believe that everyone is always dealing with something, and right now, my mast cell disease and medical issues are my something. So I do my best to keep a positive attitude and not complain, because if this is what I have to live with, I'm not going to let it drag down my attitude along with my body. But in cases like this it can be frustrating. Maybe if I *had* complained about the "side effects" I always got with IV fluids I might not have had to deal with them for as long.

I didn't speak up about my feeding tube buttons causing bleeding, irritation, and discomfort for months because I assumed I just had to accept it as part of having surgically placed tubes in my stomach and intestines. Come to find out, a simple switch to a different brand of feeding tube meant a slightly different shaped balloon which completely solved the problem. What else do I just deal with because I don't want to complain that might be able to be solved with a simple fix?

Don't worry, I'm not going to all of a sudden start complaining about everything. Even if it did uncover other simple fixes, I don't think living with an attitude focused on what isn't working is how I want to live. I'd rather choose to smile every day even if it has to be through some pain or discomfort.

Although I will say this was an interesting revelation. How often do we blow people off when they appear to be complaining? What if they're not complaining because they want to but because they are trying to calibrate their normal? If we can't ever figure out what is "normal" we could unknowingly suffer silently through things that could have an easy fix.

But like I said earlier, even just knowing that things aren't normal can be hard if we've never known any different. I mean, how was I supposed to know that other families didn't stop everything to shout, "SING ME THE SONG OF YOUR PEOPLE" when the washing machine or dryer plays the tune that indicates the end of a cycle...

What is your normal that really isn't???

Thursday, December 7, 2017

Testing, Appointments, and Colds - Oh, My!

I'm still trying to figure out exactly when December happened...I knew November was going to be a whirlwind with appointments, testing, Thanksgiving, family visiting, and just regular life, but somehow December still snuck up on me this year.

But our Christmas tree is up, the outdoor lights are hung, and the inside of our house is about as winter wonderland-y as it gets in Bokatopia. I love the holiday season, and having our own home to decorate this year has been so much fun!

Anyway, while I'm sure you're all thrilled to know the state of our Christmas decorations, the point of this post was to give an update from the last round of testing and my recent appointments before the full force of Christmas is upon us.

If you missed my update after the autonomic testing, you can read that here. After Thanksgiving I had another round of testing, this time with cardiology, an appointment with cardiac rehab, and a genetics appointment. This week I saw my allergist, (almost) did PFTs, and got Xolair on Tuesday. I am still waiting to hear back from the geneticist and my neurologist, but other than that, I am doctor-free (prayerfully!!) until after Christmas! (Other than one more Xolair before the end of the year, that is...)

Last week was a whirlwind on its own (let alone combined with the rest of November), so I'll start there. On Tuesday we spent the better part of the day at the Clinic for a stress test and consult with cardiac rehab. The stress test was to make sure my heart was working well (it is), and the consult with cardiac rehab was to maximize the benefit of my exercise. Since I have not yet had success with any medications to manage my POTS, we have had to look to other forms of management in the meantime which include exercise, lots of salt, electrolyte drinks, and compression. Even with that, I've been struggling lately, which is where cardiac rehab comes in. My neurologist was hoping that some tweaking of what I currently do for exercise may help my symptoms if I'm more purposeful with heart rate training and intensity.

Overall, the cardiac rehab appointment was frustrating. Even though I can't really run right now, I've always been more of a runner than a power/strength athlete. That means that in any sort of exercise testing, my legs/muscles typically give out well before I reach my aerobic capacity. The stress test was done on a bike which meant that even when I was maxed out in terms of my ability to keep pedaling against the resistance, I was still able to have a full conversation with the techs doing the test.

Based on the results of the stress test, the exercise prescription the doctor gave me was a few very large steps back from what I've been doing. Because I haven't always had doctors who have cared or been able to do anything to help, I've had to be fairly independent in figuring out what works for me. I felt very frustrated because one of the few things that has helped my POTS symptoms was being taken away.

Now, that said, I did actually like the doctor. Despite not really agreeing with the program, I did appreciate him being willing to listen to my concerns and explain why he was making the recommendations he was. After I shared why I felt like I was losing everything that I knew was making a difference, he was willing to make some adjustments so it didn't feel like he was taking away everything that was helping. He also explained why he was not willing to negotiate on other aspects of the program. I still left feeling pretty frustrated (and kind of ranted to my mom in the car on the way home), but I did agree to give it a solid try. It's been just over a week, and I can't say I'm convinced, but I'm also that much closer to being back to my normal exercise routine...silver lining... =)

Leni was a rockstar during our long days at the Clinic.
The day after the stress test and cardiac rehab, we were BACK up at the Clinic to see a geneticist. This appointment was fantastic! My appointment was over 3 hours long, and we still didn't finish everything the doctor wanted to cover. At the very start of the appointment, he told me that we were going to figure this out together. He was the medical expert, but I was the expert on me. As we went through each point he wanted to cover, he would take notes while we were talking. Before we moved on to the next point, he would ask me to read over his notes and asked if he missed anything or wrote anything down wrong or if there was I wanted to add.

The geneticist is the kind of doctor that you just know you can trust regardless of the outcome. I'm seeing him because there are still some pieces that don't quite seem to fit with my mast cell diagnosis. We don't know at this point if there is something else going on, but a few different things have been mentioned over the course of a few years, so we figured it was time to get some definitive answers. With some doctors, you can tell they either really don't know or simply don't care when they tell you it's impossible for you to have some unusual diagnosis. (ex. I had an allergist tell me there was absolutely no possible way I could have any sort of mast cell disease with a normal tryptase.) That is not at all the case with this doctor. If he comes back and finds something we hadn't considered, it will be great to have that final piece of the puzzle. If we get to the end of various testing and evaluations and he determines there is nothing genetic going on, then we will be confident that we have ruled any of this stuff out for good. It is a good feeling to know that regardless of the outcome, we will eventually have a definite answer.

So that was last week. Unfortunately, after spending the better part of Tuesday and Wednesday at the Clinic, I managed to pick something up during the hours we spent there...From Thursday through Tuesday/Wednesday, I was fighting off pretty rough cold symptoms which was not at all fun. The worst of it for me was difficulty breathing, especially overnight. Thankfully with aggressive breathing treatments and extra benadryl, I managed to not only get over the cold without ending up in the ER, but also keep the nasty masties at bay. I'm counting this as a win.

My allergy appointment on Tuesday was a packed day. I was *supposed* to do my PFTs, which turned out to be my saving grace, but still got Xolair like normal. PFT stands for pulmonary function tests. The point of these tests are to give quantitative data on how well my lungs doing. Because I had been sick, I was worried that my PFTs would be unusually low for me which would mean no Xolair. Since I can only get Xolair on Monday or Tuesday, that meant I'd have to wait a week. Going 3 weeks in between injections is rough any time, but with Christmas coming, I had no wiggle room. If Xolair got postponed a week, I'd be due on Christmas day...not only are the offices closed but I'd be in VA...thankfully, the PFT machine was not working on Tuesday! So I squeaked by =) (Full disclosure, I did talk with my doctor about how I had been feeling and my concern with missing a week, so it was a joint decision to go forward with the injection this time. I was not intentionally misleading my doctor and the nurses.)

After the Xolair debate, I had an actual appointment with my allergist. We had a lot to go over. Since my last appointment I had seen Dr. Afrin, seen the new neurologist that my allergist had referred me to, had autonomic testing and a stress test, seen cardiac rehab, and started with the geneticist. Plus i had tried 2 different POTS medications and switched everything over to a new supply company and specialty pharmacy. Along with all the updates to cover, we also discussed any other options for my mast cell disease and whether my current regimen needs adjusting.

It's a bit tricky right now, because we are also working on finding a medication that might help my POTS. My mast cells are relatively stable at the moment, but only because I have IV meds available which is not considered "real" stability or where we want me to be. Which means trying various mast cell medications as well...trialing multiple meds at once is not good for anyone let alone when nasty masties are involved. So it's a slow process, but at least we're moving in the right direction.

Yes, those are llamas in our nativity. Do I have the best best
friend or what???
And that's a wrap! On November at least =) December is in full swing! Please be praying I can stay away from doctors until January 2 when I have my next scheduled appointments. We are so very thankful that I am in a better place than I was this time last year, and we are hoping to make it to our church's Christmas Eve service for the first time! Last year we were planning on going, but then I ended up in the hospital until 9 pm Christmas Eve night. Not looking to repeat that this year! I'm hoping to post again before the end of December, but in case I don't, Merry Christmas and Happy Chanukah from the Bokas to you and your family, wherever in the world you are! We are thankful for your prayers!

Sunday, November 19, 2017

Autonomic Testing and Thanksgiving

First round of testing, done! Thankfully, this was likely the worst of the testing that has been scheduled so far, so at least I got it out of the way. On Monday I had some autonomic testing done that included a Tilt Table Test (TTT), Valsalva Breathing Test, and Deep Breathing Test. Don't let "breathing tests" fool you, these have the power to confuse your autonomic nervous system and cause fainting...even from a seated position or lying down...yeah, barrel of monkeys (FYI, I *hate* monkeys)...

The breathing tests were first. Basically, these tests stress each division of the autonomic nervous system separately (the parasympathetic and sympathetic sides of the ANS), while the TTT stresses the autonomic system as a whole. They sound simple enough, but actually doing them is a different story. I've said it before, but I'd *love* to see someone whose nervous system works properly do these tests to see whether they really are as draining and exhausting and miserable as they feel to me.

The Deep Breathing Test involves inhaling and exhaling to a rhythm that eventually equates to 6 breaths per minute. The idea is to have a smooth in and out pattern while staying on beat with heart rate and blood pressure being monitored the whole time. After the first of two tries, the nurse said, "You must be having a lot of breathing issues going on, too, huh?" I told I hadn't thought I was, but apparently I was mistaken...she kinda laughed at that =) This test was a challenge, but do-able. My heart rate and blood pressure responses were relatively normal, which is what I expected. Other than during anaphylaxis or after being exposed to a trigger, I don't typically have issues with shortness of breath or air hunger or any other symptoms that typically go along with autonomic breathing issues.

Next up was the Valsalva Breathing Test. Now, I have had all of these tests before. I couldn't remember the Deep Breathing Test, but I remembered the next two. The TTT is probably on my top 5 least favorite tests I've had to do. The Valsalva, while not as bad overall, still caused me to pass out during the previous round of testing. Thankfully I did not pass out this time! But it was likely only because I wasn't able to complete this test. This one is done by breathing against resistance to reach a threshold of 40 mmHg, then continue to breathe against the resistance to hold at that threshold for 15 seconds. I was quite surprised that I was unable to even get to the 40 mmHg...I could barely get halfway there. We tried a few times, but I was unable to get more than 20 mmHg consistently and was beginning to black out toward the end, so we had to stop. My blood pressure and heart rate were within the normal range that would be expected for the amount of resistance I was able to breathe against, so the issue with this was more my ability to exhale against the resistance vs autonomic issues.

Last up was the TTT. My favorite...Like I said earlier, this test is designed to stress the autonomic nervous system as a whole and see how the body reacts. A normal response would be to see a slight increase in heart rate (10-30 bpm, maximal heart rate below 120 bpm) and a slight decrease in blood pressure (<30 mmHg systolic or <20 mmHg mean BP) that normalizes after a few minutes. Far from what it is shown on House (the episode about a man with spinal muscular atrophy and his service dog), this is not a matter of raising and lowering a table repeatedly to try to get someone to pass out. It sounds much more exciting that way which is probably why they showed it that way on House. In reality, it is done by taking resting vitals (heart rate, blood pressure, oxygen saturation, etc.) for about 10 minutes while lying flat. You get strapped onto the table (so if you pass out you'd don't fall off!) with your feet on a platform. After collecting baseline vitals, the table is tilted up to 60-80 degrees over 5-10 second. That's it. You just "stand" there while they take continuous blood pressure and heart rate and all sorts of other data.

The duration varies depending on where the test is done. Some places will go up to 45 minutes if needed to induce symptoms. Other places end after 10 minutes. Some will use various medications to induce symptoms if things appear normal over the first part of the test. Regardless of where the test is done, the point is basically to get you as close to passing out as possible without actually passing out. They always say the aim is to lie you down before you actually pass out. I know plenty of people who can attest that this does not always happen. Because the test is very much dependent on each person's symptoms and response to the test, duration will be very different even within the same facility. My previous tilt was only 5 minutes because that was all the time we had. I was so thankful. I was ready to be done after 5 minutes. This time I made it almost to 7 minutes before it was over. Thankfully, the nurse and doctor doing my test were on top of things and I did not have to actually pass out. They could see my heart rate and blood pressure starting to freak out so we stopped.

Despite both my heart rate and blood pressure being not quite at my baseline thanks to the breathing tests before the tilt, I still had a significant increase in my heart rate during the tilt. I was very surprised to see the increase was even greater than it had been on my previous tilt since I had told my neurologist less than 2 weeks earlier I thought my POTS was better managed now than it had been before the original diagnosis. That said, right now, there is still some friendly disagreement in the autonomic neurologist community as to whether symptom severity parallels TTT results so these results do not necessarily indicate that my POTS is worse. But as my neurologist pointed out, regardless of whether or not it is worse than it was 3 years ago, it is still bad enough that what I'm doing right now is not enough.

What was more surprising was what my blood pressure did during the TTT. I've had a number of documented episodes of blood pressure in the 90/50 range causing fainting and other neurological symptoms. So we had assumed that was contributing to my passing out, but since I don't typically measure my BP at home, it wasn't really confirmed. During the tilt, my BP initially dropped (which is normal), steadily climbed back to normal (also good), started crashing (right when they decided to lie me down), then spiked higher than I think I've ever seen it and stayed there for a few minutes. My doctor said I got the award for highest blood pressure this year on a tilt. Not exactly an award I was going for. We were all kind of surprised to see how high my BP spiked, although, I was starting to have a mast cell reaction which often does drive an increase in BP, so that may have been a factor. I ended up needing benadryl immediately after the test as my throat started swelling...the doctor doing to the test (not my normal neurologist) was talking about epi and the ER, so thankfully everything calmed down without needing those!

Overall, the testing confirmed my previous diagnosis of POTS and gave my doctor some more info that will hopefully help us figure out how we want to go about managing it. Up until seeing the results of the testing, I would have said my POTS was relatively well controlled and that I even though the TTT might have been close to normal. I mean, I do still pass out multiple times a week and black out multiple times a day and have other associated neurological symptoms, but I still thought I was doing "well" in managing these symptoms. Maybe compared to other things...but apparently it still may be a part of the problem. We are discussing trials of some medications I had tried in the past but not done well with as well as some that I have not yet tried. I have a couple more appointments and some more testing coming up before November is over, so we are hoping that will give us some more insight.

I get a bit of breather until Thanksgiving is over, then that week I have another round of testing, this time with cardiology, and will be seeing a geneticist. After that I see my allergist to go over all the testing and appointments and see what our next steps are in terms of trying to get my mast cells more stable. After *that* I have a follow-up with my neurologist and an appointment with my GI doctor to sort out some issues with my new insurance and feeding tube formula.

It is a weird twilight zone feeling of seeing how closely these few weeks have paralleled these same few weeks back in 2014. Testing, hope, new doctors, and prayers for answers that will help us better manage my health. I was talking with a friend this week which was a great reminder of how, in the midst of the craziness it can be so easy to forget that my hope is not in the results of the, tests or the new doctors I am seeing or even in the potential answers that may come. My hope is in God. He alone is the One who has the answers we need. Regardless of the outcome of the tests or how well the appointments go, my life is not in the hands of my doctors. It's in the hands of my Healer.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.
2 Corinthians 4:16

So we are hopeful and expectant but also at peace knowing that ultimately God is sovereign. And in the mean time, please join me in a huge PRAISE that this year may be the first time in 3 years that I'm actually able to eat something on Thanksgiving! Such a simple thing, enjoying a holiday with family, that I think we all take for granted (I know I did!). I am so thankful and excited to be able to sit down with my family for dinner! At the same time, please also join me in PRAYER for the families who will be celebrating this holiday without a loved one for the first time. One of my closest friends and her family as well as the family of a friend of mine who had mast cell disease are entering the first holiday season without their mother/daughter/sister. Please keep those who are hurting this holiday season in your prayers and consider reaching out if you know anyone personally.

I'm thankful for all of you reading this blog, everyone praying for me and my family, and my friends who are living this crazy life with mast cell disease (or another rare disease) alongside me. I am so blessed, and I have so much to be thankful for. Yes, things are tough at times and I'm not going to pretend I'm always smiling or happy and never cry or feel overwhelmed or get frustrated. But I'm also truly thankful. Just like 2 Corinthians says, I *am* being renewed every day. My life is not my own, and I would not want it any other way. This year I have seen the depths of God's grace in new ways. My hope is secure. My healing is promised. My life is redeemed. What more could I ask for? Yet God continues extending His grace to me through friends who understand what life is like with mast cell disease and other rare diseases, through doctors who can help and have answers to questions we didn't even know were there, through His Word that is truly living and active and changing lives, and through His love that I am far from deserving yet would be lost without it.

I am so blessed.

I am so thankful.

Happy Thanksgiving!!!

Thursday, November 9, 2017

Switching to New Insurance

I've been dealing with medical stuff for about 10 years now. Almost that entire time has been with the same insurance company. When I realized I was going to be relying on them for a lot of my medical appointments, I made it a point to learn as much as I could about my coverage and what my benefits included. This evolved over the years as some of my care became more complex, but I was still building on a foundation of YEARS with the same plan and policies and coverage.

Then this summer I got notified that I was a year off in when I thought my coverage with my current insurance was ending. I thought I was good until 2018...obviously that was really 2017 or I wouldn't be writing this post now. To say I was caught off guard would be less of an understatement than saying I wasn't thrilled with my specialty pharmacy. While I usually think I'm pretty level headed, I'd be lying if I said I didn't have a few (okay, more than a few) moments of panic. Politics aside, I know far too well how important insurance is. My life depends on it. I am alive because it. 

After a few more panicked moments than I'd like to admit, I got to work trying to figure out what my options were. And for the first time in a LONG time, I found myself very much overwhelmed in the insurance world. This was not just a matter of reading what the benefits and coverage were for each policy and choosing which made the most sense. It was weeks of research, moments of panic, pages and pages of notes, hours on the phones, and I still felt almost more confused than when I started.

But the deadline of when my insurance was going to change has now passed, and I'm still alive (and not in a blind panic) so clearly things did eventually get figured out. That said, the entire process was overwhelming, and I would not have made it without some help, so I hope that my experience can help others facing this feeling of falling off a cliff.

This is my binder of medical records just from the past 4 years.
It also contains some important diagnoses and testing from
more than 4 years ago. This is why the transition between
insurance companies felt a bit like falling off a cliff. Because
those of us with complex medical needs rely on it almost
daily to keep us alive and able to function.
First, FIND AN EXPERT. I did not do this initially, and I wish I had from the start. The reason I did not was because I didn't feel like I could trust anyone else to know the ins and outs of insurance policies and be able to give me educated answers about what coverage and benefits would be included with each policy we were considering. It felt like my life was on the line (it kinda was), and I really didn't think even an insurance expert could add to my "expertise" that I had learned over the years. Now, I'm not at all saying I did not become something of an expert along the way. But I was an expert with my current policy. I was very much a fish out of water when I was forced to venture into the world of "other insurance."

Find someone you know and trust. We had a friend who has helped Nick with his health insurance in years past, so I (finally) reached out to him. That was probably the best decision we made in this process. Not only was he a true expert on what our options were in our area, but he also had contacts within each company that he could reach out to if there were any questions that he could not answer. Come to find out the messy, confusing research I had already done ended up being more or less useless as I had missed some of the policy limitations and fine print details that I didn't even know to look for. Having someone actually trained in health insurance that does it for a career is probably the most important thing you can do when changing policies, especially with complex health needs. Even if you yourself have worked in the industry for years, get a second set of eyes. It never hurts to have another expert give things the once over before it's finalized and you're stuck. I can't say this enough. Do not do this alone!

Once you've chosen your policy, the next thing I would recommend is to START MAKING LISTS. Now, I am by nature fairly organized, so if you're not a list person, there may be another way that works better for you, but at least hear me out. As you transition to the new policy, you will have to switch all your care over. It will be exponentially easier if you are organized. Here are the lists I recommend making as you go through this process:
  • Every doctor you see with their specialty, major hospital system (if relevant), phone number, and address
  • All your medications with generic name (and whether you use the brand name or generic), dosage, frequency, time of day you take it, the reason you take it, how it is taken (orally, IV, through feeding tube, injection, etc.), and which doctor prescribes it
  • Pharmacies you use with any specific details (specialty pharmacy, mail order, etc.), the medications you get from each pharmacy, and how much you get with each order (1 month supply, 3 months, etc.)
  • Equipment - be thorough, you'd be surprised that little things fall through the cracks even though they seem like common sense
  • Think that because your medications come in
    vials that sending syringes would be common
    sense? Think again! Nothing is too small to list.
    • IV supplies: pump and charger or batteries, tubing, flushes, sterile access kits, huber needle (specify size and any other preferences), dressings (again, include any allergies and preferred brands), sharps container, medications, syringes to draw up medications, alcohol swabs, IV pole
    • Feeding tube supplies: pump and charger (specify which brand you use and why), bags (note the size you use if you have an infinity pump), extensions for buttons, formula (brand, amount per day, caloric goal) syringes
    • Nothing is too small to list! Err on the side of being too thorough rather than assuming things are just common sense and will be included. They won't be. Pharmacies, in general, do not have common sense (at least in my experience). 
  • Scheduled deliveries with the days they arrive, what supplies come in each shipment, and what company sends it
  • Upcoming appointments with the doctor you are seeing, any tests that have been scheduled, and what will need coverage at that appointment
Once you are listed out, set all the lists you've created aside for a week. Then recreate them from scratch without looking at the previous lists. THEN compare. That helps make sure you really do have comprehensive lists which will make the transition much easier.

Next up is to CANCEL YOU PREVIOUS POLICY. Now, technically this step is not necessary. When you stop paying the premiums, eventually that company will discontinue your coverage. However, when you have complex medical needs and have thousands of dollars billed each month, this simply 10 minute conversation can save you a lot of headaches. By calling to officially cancel, you policy will be deactivated on the day you specify. If you don't cancel, it will technically still be active until the end of the grace period for payment which is often an entire month. That means anything billed to them within that month, will still be covered as though you were still active with that insurance. Then when it finally terminates after you have not paid, they will backdate it and retract all the payment during that month. Guess who gets stuck with the mess of paid then unpaid bills and having to resubmit everything under your new insurance??? Save yourself the headache and make this super quick call to cancel.

TALK TO YOUR DOCTORS AHEAD OF TIME. You may have to do this a few times because unless you already have your new card, they can't technically update their system yet. However, by speaking with them ahead of time, you may be able to anticipate any problem areas that may occur. If you receive any injections or infusions or whatever in the office or outpatient setting, you may need a new supplier as your insurance changes. The nursing staff can be very helpful as they work with all sorts of insurances. They will likely be able to recommend which supplier other patients that have your same insurance use. This can speed up the authorization process and reduce potential gaps in treatment. Also, if you give them a heads up, then they aren't shocked when tons of new authorizations come in for medications and treatments you may have been on for a while. At least in my experience, the front desk staff and nurses appreciate when I give them a heads up that things are going to be a bit crazy for a few weeks as the new coverage is sorted out. They also may be able to give you samples for some of your medications if there will be a gap in coverage during the authorization process. Bringing a plate of cookies or some seasonal baked goods after the whirlwind of paperwork has ended can be a great way to thank them for their help.

Stock up if possible! My new insurance only covers 2 epipens
per month through the end of 2017. While I hope not to need
more than that, I have gone through seasons where I've used
1-2 epipens every 4-5 days. To avoid having to fight for more
coverage while it was critical that I had them, I stocked up to
hopefully avoid that issues until 2018 when the quantity limit
disappears and there are no restrictions.
So, now you're about as prepared as you can be. But you're not home free yet. Even after all this careful preparation, be sure to also PREPARE FOR A MESS. This is not to say that things will not go smoothly. To be honest, my transition has been far smoother than I ever could have imagined, and I'm almost feeling like it's too good to be true! But I didn't know that going in, so I prepared for a mess. I think part of the reason it is going smoothly is BECAUSE I was prepared for the exact opposite. So what do I mean by prepare?

Try to refill all your medications as close to the end of your coverage as possible. That will give you time. I was able to adjust my refills with most of my meds so that I filled them one last time before the end of October. I had a full month of tube feed supplies delivered on the 27th, received a shipment of IV supplies on the 30th, and refilled all my mail order medications (that give a 3 month supply) in the middle of October. All this meant that when November 1 came and everything had to be re-approved and authorized, it was not a race against time to get it in, ordered, and shipped before I ended up in the ER because I ran out in the mean time. Instead, I was prepared for a long drawn out approval process and ready for the hold ups I knew would come. (But like I said, so far things have gone so smoothly!)

My last tip would be to BE PROACTIVE. The first day possible, request a case manager with your new insurance. I had a case manager with my previous company which was helpful, but as I had been with them for so long already, there wasn't much she could add. As I have been starting over with my new company, having a case manager has been invaluable. We spoke on November 2 to go over all the supplies I need and what company provides them, which meds I'm on and which doctor prescribes them, what my current stock of medications was and what was the biggest priority to get first, and just an overview of mast cell disease since she had not heard of it before (shocker, I know =P). 

Most companies have what is called Transition of Care which gives you a refill of everything you're currently on (meds, treatment, supplies, etc.) which they run the official authorizations. That is to prevent any lapses in treatment that could result in worsening symptoms (and them having to pay for an ER trip or hospital stay). My case manager was on it. Less than 24 hours after we spoke for the first time, I had a shipment of IV supplies with my Transition of Care meds and equipment. There was a hold up with my tube feeding supplies because of how it was covered under my previous insurance, but since I was PREPARED, it has not been a big deal. By Monday I had received the official approval of my Xolair through 2018. There is no way any of this would have happened this quickly without my case manager.

The other thing I did to be proactive was to do my own research into infusion supply companies, specialty pharmacies, and enteral feeding suppliers. This is something that my case manager could have handled, but I chose to research ahead of time for a couple of reasons. One of the companies I was using is covered under my new insurance. But they cannot provide some of the other supplies I need. Had I left it up to my case manager, she probably would have kept the one covered company and found others to fill in for the ones no longer in network. I was hoping to consolidate everything to a single company, so I did research ahead of time to find one in network that could do everything I needed. Then when I spoke with my case manager, I just told her that I would prefer to switch everything over so it was all together. Since we already had to switch 2 companies anyway, it was not a big deal to switch one more, but if I hadn't looked ahead of time, I don't know that would have happened.

Whew! Are you overwhelmed yet? I know I certainly was when I first started this process earlier this year. Changing insurance policies, especially when it comes to complex medical needs, will never be easy. But I hope that my experience can help make the process a bit easier for anyone else facing what felt like the edge of a cliff as my change-of-insurance date came up way faster than I expected. Just remember that there is no perfect coverage. Prioritize your needs and find a policy that is the best option. What you hated with your previous company may become so much easier to deal with under the new policy. And vice versa, things that were so simply before may be more complicated after the change.

Just like living with chronic health issues, take it one step at a time. Don't create problems before they appear, but do be ready for there to be hiccups along the way. It is possible to have a smooth transition and end up with coverage that is more than adequate for your needs. I may be only 9 days into my new policy, but so far, so good! Life with a rare disease is not easy, and I don't think changing insurance companies will ever be easy either. But hopefully my experience can help make that transition easier!

Wednesday, November 1, 2017

Whirlwind of Appointments

In between the craziness, we REST!
Three years ago, the end of October into the middle of December was a whirlwind of appointments and hospitals and testing. That was when we first started making progress in actually figuring out what was going on and finding doctors who actually seemed to want to help and actually could help. After that whirlwind of appointments, testing, and eventually diagnoses, I thought we were mostly done in the "let's figure this out" discussions and could move on to "let's find the best treatment" talks. While that did hold true for a while, the past few months we have reached a bit of a crossroads of feeling like there are some unanswered questions that are still outstanding (both in the
uncompleted sense of the word as well as the definition most commonly meaning above what is expected...sometimes I just want to have NORMAL symptoms...).

That means the end of October, November, and likely the beginning of December will be an almost twilight zone repeat of three years ago. My mom and I just got back from seeing Dr. Afrin (my mast cell specialist) in his new NY location (WAY closer than MN!!!). It was a good appointment that gave us a whole list of options to consider going forward with his recommendations of which to trial first and what to discuss with my local doctors. We got back to Ohio, and less than a week later, I had an appointment with a new neurologist at the Cleveland Clinic.

This was a big appointment for a couple of reasons. The first being that I had actually seen a neurologist at the Clinic about 4 years ago. Long story short, the doctor I had seen then basically told my mom and me that I wasn't sick enough to see him and that I should come back when I couldn't walk. No, that is not a paraphrase. He used those words. Since then, I have avoided the neurology department at the Clinic like the plague. Recently symptom progression, however, meant that I got a referral from both my allergist and one of my GI doctors (also at the Clinic) to see a specific neurologist there. Since I trust those doctors, I agreed to give it another go, especially since it was to a different doctor. But I still had a bit of apprehension...

Leni was an Indians player for Halloween!!!
Thankfully, that appointment went better than I expected! The second reason it was a big appointment is because I saw Dr. Wilson, who is considered one of the top doctors for POTS and similar diagnoses in the dysautonomia community. He had spoken to both my allergist and GI prior to my appointment so he had a decent history on what was going on. I had brought records from the neurological testing I had done in 2014 in Milwaukee by Dr. Chelimsky who used to be at UH, so Dr. Wilson knew him (Dr. Chelimksy is also a big name in the dysautonomia community). He did an exam during the appointment which confirmed the prior diagnoses and added a few more tests to the list that he felt were important based on my symptoms. I can't say I'm thrilled to be repeating some of the testing, but I am thankful to have a doctor who seems invested in helping us figure out the unexplained symptoms.

Bonk was a spider!!!
So, what testing you might ask?? First up is a repeat Tilt Table Test in about 2 weeks. For anyone with POTS or probably any form of dysautonomia, this is a much dreaded nemesis of evil. Basically the point of the test is to get you as close to the point of passing out without actually passing out, then keep you there for as long as possible to measure heart rate, blood pressure, oxygenation levels, etc. I've had 2 already and could do without another, but there are some new variables Dr. Wilson wants to measure that have to be done during the tilt. Wonderful...Let the record reflect that I am, in fact, being a compliant patient. Just saying...

After Thanksgiving I have a consult with Cardiac Rehab to see if there are any changes that I can make in my exercise routine that can help maximize the benefit I get from biking and/or running. Medications are not a great option for me because of my mast cell disease (and also because I really don't want to be on any more meds than I absolutely have to...but I'm being compliant, remember??), so we are going to make sure we can squeeze every last bit of help from the therapies I am able to utilize (salt, exercise, salt, compression, salt, high fluids, salt...can you tell I love salt??).

I'll also be doing another Stress Echo since it's been over 8 years since my last one and Dr. Wilson felt that it was probably a good idea to make sure nothing has changed since my symptoms are worse than they were at the time of the first Stress Echo. (Side note: Being 20-something years old and going for a stress echo is slightly funny as I am usually the only person under 50 in the room and if I'm with my mom or dad, the nurse seems to think they are the ones there for the appointment!)

Lastly, just before the end of November, I'm seeing a geneticist at the Clinic. As I mentioned, I'm still having symptoms that just don't quite fit into my current diagnoses. We tried to fit these square pegs into round holes but finally had to take a step back and acknowledge that maybe we are still missing a piece of the puzzle. We have a few ideas that do seem to fit quite well with the unexplained symptoms I'm having, so we are hoping that this geneticist will be able to help sort through what possibilities are left!

All the craziness makes Leni a sleepy poodle =)
I see my allergist at the beginning of December, and will be following up with the neurologist at some point once all the testing is finished. He also did a ton of blood work after my appointment so we will see if those tests add anything to what has already been scheduled. Like I said, whirlwind...

To add even more fun and excitement to the mix, my insurance changes TODAY meaning Dr. Afrin and Dr. Wilson were billed under my previous insurance and everything going forward will be billed under my new policy. Plus I'm having to switch all my medications, IV fluids, infusion supplies, and tube feeding supplies to new supply companies which requires new orders from my doctors, new authorizations, and probably my third child at this point. I'd say my first born, but I'm pretty sure that already went to my specialty pharmacy that is apparently incapable of doing anything without some serious hand holding. Silver lining in all this is I can finally part ways with them for good!

As always, please know that I am so thankful for all of you who keep me and my family in your prayers. I know I can sometimes feel like my prayers are more of just something to check off a list, especially when I don't always seem the outcome of what is being prayed for. I hope that me sharing on this blog, you can get a glimpse of how God is blessing me so incredibly through your prayers. I'm not going to say that life is easy, because it's not. But it is full of hope and blessing and joy. And without so many of you supporting me and my family here in Ohio and all over this country (and world!), that hope and blessing and joy would fade.

Things are tough sometimes, but I have so much to be thankful for. I never in a million years would have imagined I would move 6 hours from home for grad school, let alone to Ohio where the winters are most definitely too cold and windy for someone who grew up in VA. Yet how incredible is it that I now have one of the top medical facilities in the WORLD in my backyard??? I get asked how I can live with a smile on my face and truly be joyful in the midst of dealing with the craziness of mast cell disease and other issues. It's because I know our God who is greater than it all and a family of believers who carry me through the hardest moments with their prayers. Sometimes the English language is so incapable of communicating something that has it roots in things not of this world. Until heaven, the best I can do is say is THANK YOU. Please know I truly mean that.

Wednesday, October 25, 2017

Miss Sassy Pants Poodle: Two Years Later

It has been 2 years since I brought Leni home as my service dog. Crazy, I know! In some ways I feel like I can't remember what life was like before I had my protective shadow following me everywhere. Leni has become such an incredible part of managing my mast cell disease, and I am so thankful to have her.

One of the comments I get very often is how well behaved she is when we are out in public. Sometimes it's in response to us getting up to leave the coffee shop and people having no idea she was even under the table. Other times it's when we are just running some errands and people commenting on how there is no way their dog could walk calmly through the meat department in the grocery store without smelling and licking everything. Occasionally it happens when hospital staff mistake her for a blanket or coat on my bed until she moves and they realize there is actually a dog on my bed! What makes all these interactions even more fun is I have noticed that I get the most comments on her impeccable behavior on the days I feel she is behaving her worst. Go figure...

Isn't that how it always works, though? Small wiggles in Leni's down stay are noticeable to me because I know she can stay without them. Taking three times to pick up my keys gives other people a chance to wow at how cool that task is, but to me it means that she's a bit distracted. Coming the second time I call her away from another dog at the dog park is impressive to owners whose dogs never come when they are called, but tells me we need to review long distance recall with distractions. We're ALL most critical of the people or things we are closest to.

Leni is held to high standards. I will fully admit that. Bonk is allowed to jump in excitement, but Leni is expected to show some self control and not be out of control even when she's excited. Bonk gets free reign of the furniture in our house. Leni has to ask permission to come up on the couch or bed and wait for our okay. Bonk is allowed to go the bathroom at his leisure (when outside obviously =P). Leni goes on command and we are working on her going where she is told. Bonk is allowed some freedom to be our little "land shark" and clean up any food that is dropped in the kitchen or under the table. Leni is not allowed to eat any food off the ground.

Now, before you call PETA and start to think Leni is living under some dictatorial regime, let me also remind you that she gets to be with her person (aka me) 24/7. Isn't that practically Christmas and birthdays all rolled into one for dogs? She gets to ride in the car all the time. We are extra intentional about making sure she gets plenty of time to run around in the yard and play and just be a dog so she is mentally and physically ready for her service dog work. She gets to do things and go places most dogs never will. She gets to do what she loves (working) every day. Some dogs are food motivated (Bonk), some dogs are toy motivated, and some dogs truly are work motivated. Leni does not work because I give her treats all the time or reward her every time she does something right. She works because she needs a job. Any of you who have seen Leni working (and maybe seen an alert) can see how focused she usually is and how her personality changes when her gear comes out.

And let me tell you about that personality...if you've only seen Leni working, you have not seen the real Leni! To be honest, it took us a bit to figure each other out. I had never owned (or wanted) a poodle before Leni, and I also was a first time service dog handler. Leni was taken out of her comfort zone of the trainers she knew well and all of a sudden she was supposed to work for some random person she had only met twice before coming home with me. There was a honeymoon period where Leni was kind of on her best behavior like any of us are in a new environment. Her training really shined during that time because she knew her job and that was her fallback when she was unsure of where she was. We were still heavily training the mast cell alerts and refining the hypoglycemia alerts, so we were learning together.

After about 9-12 months together, we started to really get in tune with each other. I'd begun to pick up on her small cues that let me know she was thinking about alerting (double checking is what I call it now) and differences in HOW she alerts that seemed to indicate the severity of my reactions vs. hypoglycemia. She was getting more and more accurate with her alerts and really seeming to step up in how she responded to my reactions. But that's not all that changed.

You might think that as our bond grew, her behavior continued improving until we were like a well oiled machine...well, if you did think that, you'd be WRONG. Instead, as Leni got more comfortable in her role as my service dog, her personality started coming out her ears! Up until about a year, Leni was playful and fun and goofy when we were at home and she was "off duty." Then she realized how comfortable she was and that she was HOME. And that's when her sass showed up...I had been told about Leni's sass when I was first working with her before she became my dog, but it didn't seem that obvious at the time. I figured they just wanted me to be prepared for a worst case scenario, so they made it seem like she had more of an attitude than she was showing. HA! Joke was seriously on me when I looked back and realized about when Miss Sassy Pants really started to feel at home.

It was actually a very interesting revelation for me. Prior to Leni all our pet dogs had been chosen based on how they looked, personality, color, etc. When I picked Bonk, I knew I was looking for a non-white medium sized dog who could live comfortably in an apartment with me but also enjoy short runs. When my parents chose Maggie, they wanted a small dog, preferably a female, that could snuggle in their lap and be a companion for their other dog. Leni was chosen for me. Before I brought her home and we were officially a team, I did get some time to work with her and decide if I thought we could work together. But like I said before, I had never really met a poodle before and had never had a working dog. So I really relied on the expertise and recommendation of Leni's trainer in making the decision to move forward with Leni.

And I'm so glad I did! Nick likes to joke that my stubbornness is good at off-setting Leni's sass. He's probably right...haha, but it's also what makes us a good team. Leni needs someone to set the rules, enforce those rules, and not give an inch when she tries to take a mile. I need a dog who is independent enough to be confident in breaking her down stays (even when I order her back down) to alert. The same hyper-focus that can drive me nuts when Leni won't stop hunting chipmunks is the hyper-focus that meant Leni still alerted when we were in the middle of crazy crowds at Disney. The sass that frustrates me when I see her mind churning as she decides if she is actually going to come or keep running around the yard is also what keeps her alerting before my most severe reactions even after I have thanked her for the alert (her cue to lie back down).

Two years ago, I had no idea what I was getting myself into when I brought home this crazy poodle. Of all the breeds she could have been, she was the one breed I always made fun of for being froo-froo and the only breed I said I knew I would never want. It's two years later, and now I can't imagine not having goofy Miss Sassy Pants Leni as my poodle-shaped shadow.

*This post was made possible by Christy and Buckeye Service Dogs and all the incredible trainers who had a role in training Leni, especially Katie and Sara and Kelly. You guys are forever a part of our story!

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 
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 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 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 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 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!