Wednesday, January 27, 2016

Not Medically Necessary??

Ready for a rant?

The most frustrating part of dealing with a rare disease...insurance companies.

Don't get me wrong, I am SO thankful to have insurance. Things would be much different if I didn't. But seriously, it does NOT need to be this hard.

We got a letter yesterday from my insurance company saying they will not be covering my recent hospital admission because they deemed it not medically necessary. They decided that because the diagnosis code that was used was "vomiting without nausea" and in their mind, that can be dealt with as an outpatient.

Fine. Except that WASN'T why I was admitted...

I was in the hospital for almost an entire week. During that time, I did not throw up a single time. No vomiting... However, I WAS on nausea medication the whole time because...you guessed it, I was nauseas!

I had gone to the ER the day before I was admitted on orders from my doctor and went back the day I was admitted because, again, he told me to go. The ER doctors felt that things were unstable enough that I needed to be admitted. So now apparently I'm supposed to go against the recommendations of my doctor who knows me and my symptoms and the ER doctors.

My potassium was so low I ended up needing almost 3 days of IV potassium because I cannot take it orally and it can't be put down my tube. It was also low enough that they were worried about heart issues and had me on a heart monitor the whole time I was admitted. That certainly sounds like nothing important that could be dealt with outpatient...

The doctor I was admitted under spent all of 20 minutes with me the entire week I was there and spent most of his time telling me that he was just not familiar with my mast cell disease and didn't really know what he should be doing to treat it. He contacted my allergist (not GI) to get treatment recommendations and followed what he said. They even wanted to transfer me to a different hospital since there was no ALLERGIST on staff where I was to consult with.

Because I was having such a severe mast cell reaction, I had bad abdominal swelling. So yes, I did have some vomiting, just not while I was admitted. But the real issue with the swelling was that meant I couldn't run my tube feeds because it was too painful. So for a week, I had ZERO nutrition. They had to keep me on IV fluids and IV dextrose 24/7 to keep my hydrated and stabilize my blood sugar since I couldn't eat. Apparently being able to take in nutrition is not medical necessary for survival...

We were going to leave earlier than we did, but since we were treating my mast cell reaction (not a GI issue) I needed to be on IV steroids to help reduce some of the inflammation. I cannot take oral steroids and since they cannot be stopped suddenly but need to be tapered, the doctor said I had to stay longer so I could do the taper in the hospital. Again, not like I had a choice at this point but to stay under the orders of the admitting doctor.

Seriously?!?! What part of that hospital admission was NOT medically necessary?? It's like they think I enjoy spending a week in the hospital and having to basically tell the doctors and nurses what to do since they have no idea how to treat me. Or maybe they just enjoy talking to me on the phone and since we finally got all my other insurance issues (from September...) straightened out, they needed to find another reason for me to spend hours of my time on the phone with them trying to fix this mess.

I don't typically cry easily. When I opened this letter last night, I started crying. I know life isn't fair and I don't expect it to be, but sometimes I just want to shout "IT'S JUST NOT FAIR!" and throw things at the wall (or the insurance company). It's not enough that I have to deal with living with mast cell disease on a daily basis. I also have to deal with all this mess that the doctors and insurance companies and hospitals who have no idea what I go through create.

Not medically necessary...I wish the people who made that decision could spend just one day in my shoes and then say that admission was not medically necessary. These insurance companies are making life-impacting decisions from the comfort of their offices and may have never even set foot in a hospital or seen what patients dealing with chronic issues deal with on a regular basis. They make decisions that can have serious implications for our health, yet they do it from a distance and never get close enough to see the effects their decisions have on our lives.

We already pay for my tube feeding formula completely out of pocket because it is not considered a covered expense under my policy. They covered the surgery to place my tube and cover all equipment needed to run my feeds, but won't pay for the actual nutrition...What part of that makes sense?? Probably the same part that decided the hospital stay was not medically necessary either...We're in the process of trying to get authorization for an immunotherapy injection that has shown good results in the mast cell community. The problem is since mast cell diseases are so new, there are no approved treatments, so our first attempt at getting this approved was denied. Here's a thought, maybe if they approve this treatment, it would work and keep me from ending up in the hospital and this whole mess could have been avoided...just a thought...

Okay, rant over.

Friday, January 22, 2016

Update One Year Later

Today is January 22, 2016.

One year ago today we received the official diagnosis of Mast Cell Activation Syndrome (MCAS).

I went from being told there is nothing wrong and everything is in my head to having test results showing proof of a rare disease.

In some ways, so much has changed. In other ways, it feels like we've gotten nowhere.

I went from having just my specialist in MN and my GI doctor in PA to now having a neurologist and allergist locally who are working to help us figure things out. I went from anaphylaxis almost every time I tried to eat to not needing my epi pen for going on 6 weeks now. We identified the source of my muscle weakness and balance issues as uncontrolled low blood sugar. We brought Leni home as my service dog to help me regain some control over the unpredictability of my symptoms and reactions. We are in the process of getting insurance approval for some new treatments that may be the key in alleviating my symptoms.

At the same time, I'm still dealing with daily, persistent symptoms. The severity ranges from mild to debilitating, and I have no idea what each day will bring until it comes. I can do everything right (take my meds, avoid my known triggers, give my body time to adjust/recover, etc.) and still deal with severe symptoms. I've had a feeding tube for almost a year now and still cannot tolerate solid food and sometimes not any food at all. While I do have doctors who are willing to help, many times they just don't know what to do. While we know my blood sugar is out of control at times, we still don't know how to manage it. Leni is making progress with her alerts, but when I am so continuously reactive, there is only so much she can do. My insurance has already denied some treatment options once, so we are in the appeal process and hoping to get it approved this time.

This time last year I was working as a graduate assistant at school teaching undergraduate exercise courses and doing research in the labs. In August I had to give up my assistantship because I was unable to keep up with my responsibilities. I am slowly creeping toward finishing my degree around doctor appointments, medication induced brain fog, and symptoms that make me too exhausted to think straight. I made it almost a year without being admitted to the hospital, only to start 2016 with my longest admission to date.

One step forward, two steps back. For every bit of progress we make, we get knocked back again, sometimes seemingly farther back than where we started.

A year ago when I wrote the post about the diagnosis, I had no idea what the year would bring. All I knew was that we finally had an answer. I felt relieved, validated, and thankful, but also scared, uncertain, and nervous. I had just been inducted into a club no one wants to be a part of with no clear cut answers or understanding, even by the best in the field.

Even my specialist, one of the top doctors in the country for mast cell diseases, readily admits how little is actually understood about the underlying mechanisms. Every case is different and symptoms can vary widely from patient to patient. Treatment is trial and error and what works in one case may not work for the next. It is frustrating not only for us as patients as we struggle to manage our symptoms, but also for the doctors who truly want to help us but sometimes have no more answers to give.

We may not have answers yet, but research is promising. Just this past December I had the opportunity to be a participant in a research study being done looking at the genetics and mechanisms in MCAS patients. While the results are still months away, knowing that research is being done is encouraging. One day it won't be trial and error anymore. One day treatment will be tailored to each patient based on genetics and/or symptom patterns. One day, someday, there will be a cure.

Until then, we treat the symptoms and manage things as best we can. It's been one year and even though things are not good, we are moving in the right direction. We hope and pray this year is better than last year. Maybe by this time next year I'll be able to share how much more progress has been made and the results of the research being done.

One thing is for sure, A LOT can happen in a year. Maybe this will be the year my symptoms will randomly start improving...who knows, it's possible =P

Monday, January 18, 2016

Service Dog in the Hospital

As a newer service dog handler, I still have a lot to learn when it comes to navigating all sorts of different situations with a service dog. Being in the hospital last week was one of these new experiences, so I thought I would share how it went!

Since Leni is a service dog, according to the ADA, she is treated like medical equipment similar to a wheelchair. That means she is allowed to be with me wherever I am, including the hospital!

Last week was my first time being admitted since having her, so it was a bit of a new experience. Not only did Nick and I need to make sure I had everything I needed, but that Leni was cared for, too.

Since I wasn't able to take her out for walks or exercise, it was up to whoever was staying with me to make sure Leni was cared for. Due to the fact that mast cell disease is a rare disease, and I am not always able to advocate for myself when I am in the hospital, we always make sure someone is with me anyway. This works well when we add Leni to the mix because that means there is always someone to help care for her, too!

On Wednesday night when I was getting admitted, Nick ran home to pack up stuff for me and Leni. I actually have a printed off "hospital packing list" for myself that I keep for easy access so Nick can just grab what's on the list and not have to worry about forgetting something if I get admitted unexpectedly. I hadn't had the chance to make something like that for Leni yet, so we were scrambling a bit, but we figured it out!

Here is what we brought for Leni in the hospital to make sure she was cared for and to keep her comfortable:

  • Leash/Vest - obviously =P
  • Boots - It got pretty cold while I was in the hospital and snowed a couple inches. To protect her feet from the salt and cold, and to make it more comfortable for her to go for walks, we brought her boots to put on when she went outside.
  • Coat - See above, getting cold + needing extra walks = need to make sure Leni is warm!
  • Bed - I have a camping style dog bed that rolls up nice and tight that is great for traveling. We brought that for her, but also ended up getting some extra blankets from the nurses to make her bed even softer.
  • Food - Since we didn't know how long I would be admitted, we kinda just guessed how much food we would need. We ended up running out and Nick had to grab more, but we couldn't really have planned for that.
  • Bowls - I was given some fantastic travel bowls by a friend who also has a poodle service dog, and I love them! They pack so easily and hold up well. We have one that we keep filled with water and use the other for her meals.
  • Towel - We actually didn't have one initially, but quickly realized it would be a good idea. Since she did wear her boots, it wasn't as big a deal, but I HIGHLY recommend having a towel for your service dog. If she was going to be up on the bed with me or just coming in from outside, we really didn't want soggy paws tracking mud around the room.
  • Toys!! - VERY IMPORTANT!! Haha, at least for Leni it was =) She is a very playful dog, so having some things to keep her occupied when we are stuck in one room for almost a week a time is important. We brought a squeaky toy (her favorite) and a bone for her to chew on. 
  • Treats - I brought some treats so I could do some training exercises with her and challenge her mind for a bit each day. Being stuck in one room is tough, so in addition to having my mom, Nick's mom, and Nick take her out for walks, I also taught her some tricks, worked on her service tasks, and just played with her.
  • Poop bags - Enough said. =P
It seems like a super long list, but it really isn't that bad. I have a backpack that I pack for trips and all this stuff fits in there just fine. I've also added a section to my "hospital packing list" for Leni supplies so in the future we'll be all set.

Like I said, I was admitted from Wednesday night to Tuesday afternoon, so almost a whole week. That's a long time for a 1.5 year old poodle to be stuck in one room. Leni was fantastic for the most part, but we had to be aware of her needs to keep her that way =) 

Whoever was staying with me would take her out a few times a day for a walk. I was on the 6th floor, so even just something as small as taking the stairs instead of the elevator gives her a chance to get some energy out. I also made sure to do a bit of training with her every day that I was able. Some days it was just reviewing some of her tasks that she already knows in a new place and other days we did some useless but fun tricks. Either way, it was a chance to give her something to focus on and use some of the pent up mental energy.

I was so proud of Leni, and so grateful to Buckeye Service Dogs for the incredible training they have done with her. She was a model service dog, and never once did she act in a way that would make someone question her training. While I do wish my health was in a place where I did not have a need for a service dog, I will say that Leni makes having a service dog pretty sweet. Having her with me in the hospital made it just that much more bearable and less frustrating.

I hope this is useful/helpful for someone else starting off with a service dog and facing a hospital admission. It can be a challenge, but it is doable, and we made it work! Leni was great, and now that we have established that, we can stay out of the hospital indefinitely! At least that is the plan...




Wednesday, January 13, 2016

Rough Start to 2016

Well, 2016, you've certainly given me a nice warm welcome so far...and no, I'm not just being sarcastic about the weather...

It has been a rough few weeks...or month...I think I've lost track...

For a while now, I've been dealing with more frequent and severe symptoms, even more so than "normal" for me. It has been draining physically, emotionally, spiritually, mentally, you get the idea.

It's not for a lack of trying that my symptoms are out of control. If anything, I would say we are so so so close to actually getting somewhere...we're just not there yet...

In some ways, I think it's even harder to be in this position than when we still didn't have a diagnosis. When we didn't know what we were up against, it kinda made sense when we were still scrambling for effective treatment. Now, we know what we're fighting, but treatment is still just far enough out of our reach that we're left scrambling.

It's like that feeling you get when you KNOW the answer, it's on the tip of your tongue, but you just can't get it out. Or when you're reaching as far as you can into a narrow space and your fingers brush again whatever you are trying to grab, but you just can't seem to get a hold on it.

We'll get there eventually, I have to believe that, but in these moments of complete weakness, frustration, and discouragement, it can still seem so far off.

I just got discharged yesterday after what ended up being almost a full week in the hospital. Less than one week into the new year and we had 2 ER trips on back to back days, and then ended up being admitted.

What was my OneWord for this year again?? Oh yeah...VICTORY...

Yes, I am a bit discouraged. Starting 2016 with a hospital stay was NOT really what I had in mind when I was choosing victory as my OneWord. But I'm also hopeful. Where can I go now but up, right??

Don't answer that...haha =P

Victory can't come if there isn't a chance for defeat. You can't win a game if there is no chance you can lose. Nothing can be overcome if there is no challenge to begin with. God can't shine if there is no darkness. If I want my life to be a testimony of who God is and what He can do (and I do), then I HAVE to expect tough times and challenges.

Yes, life is hard right now. But the less I can do in my own power, the more I HAVE to and the more I GET to rely on God. Even though I can't see the end of this season of life right now, I am so looking forward to the time when I will be able to look back and say with complete confidence that God was with us every step of the way. I truly believe that God is blessing Nick and me with an incredible testimony of His goodness and faithfulness that we would not feel if life were "easy" right now. Doesn't mean I don't cry for him to take the pain and struggles, but it does mean that I trust Him and look forward to seeing what God does through this.

So yes, 2016 is off to a rough start, but that's okay. I'm ready for some VICTORY this year, and while I don't know what that looks like or what that will bring, I do know that I'm on the winning team. This time next year, I look forward to being able to share the incredible things God will have done over the year as He brings about VICTORY in my life...whatever that may look like.


Saturday, January 2, 2016

OneWord 2016

I'm starting this post on January 1, in the midst of a bad flare of symptoms. I've been lying in bed hugging a trashcan or sitting on the floor of the bathroom for the past 2 hours trying to fight off yet another reaction. New year, same drill...going to sound super ironic when I share my OneWord 2016.

Ready??

VICTORY

I know...I'm not feeling very victorious right now...and it's only Day 1...

BUT there's a whole lot of year left, and despite how rough this year starts, I refuse to let that dictate the next 365 (leap year!) days.

Like I've said before, I truly believe that this is not MY OneWord, but a word God has placed on my heart. Leading up to the end of December, I begin praying and asking God what should be focus and theme for the upcoming year. Some years are more straightforward than others in choosing a word.

This year the word came to me almost immediately. After a year of HOPE, what else could I choose but VICTORY?? Plus, when talking with my mom on New Year's Eve, turns out she came up with the same word for me without any idea of what I had been thinking and praying about. That just confirmed it.

So, VICTORY, what does it look like??

Truthfully, I don't know. A close friend introduced me to the phrase "expect without expectations" when we were in college. The idea is to be ready for God to move, to believe that He can intervene in any circumstance, and to wait expectantly...BUT that waiting is to be done without preconceived ideas of WHAT God will do or HOW He will accomplish it.

So when I say my word is VICTORY, it means that I am ready for healing and victory over these challenges, I believe that God is able to bring about healing and move in a mighty way, and I'm waiting to see what He is going to do. Yet at the same time, I understand that healing in God's eyes may look different than how I think it should look. God's plan is bigger than me, and I want that victory to be a part of His plan, not just my life, whatever that may look like. So while I am choosing VICTORY as my theme for the year, it is in knowing that God's and my definitions may be different and the end result may not be at all what I expect. So I'm "expecting without expectations!"

Deuteronomy 20: 1, 4
When you go out to war against your enemies, and see horses and chariots and an army larger than your own, you shall not be afraid of them, for the Lord your God is with you, who brought you up out of the land of Egypt...for the Lord your God is He who goes with you to fight for you against your enemies, to give you the victory.

Moses was reminding the Israelites that not only would God be with them as they faced their enemies, but that He was the same God who had already given them victory in Egypt. God is always with us, and has already given us victory over many things in our lives. When things seem tough, that is what we have to hold onto.

2 Corinthians 12:9-10
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. for the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

If I have the weaknesses I do for the sake of being a testimony of God's strength in the midst of these challenges, then I truly do count it as a blessing. If I could be strong on my own, there would be nothing for God to add. Instead, I am helpless on my own, and I have nothing to add...God is the strength I need and gives me victory over challenges as a testimony of who He is.

2 Corinthians 10:4
For the weapons of our warfare are not of the flesh but have divine power to destroy strongholds.

Like I have said before, choosing VICTORY as my OneWord does not necessarily mean I will be physically healed by the end of the year. My struggles are not just physical but spiritual. While I truly am praying for physical healing, even more I am praying for spiritual healing and growth.

James 1: 2-4
Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and completely, lacking nothing.

Joy is smiling through the tears knowing I still have a promise of healing. Joy is laughter amidst the pain and nausea and ER trips and doctors appointments believing that despite my circumstances, I am loved beyond anything I could imagine. Joy is being reminded that I always have hope in God even during the hardest, darkest moments. My faith has truly been tested over the past few years. It has been stretched, and at times, felt torn to pieces. But at the same time, it has grown on a much stronger foundation, and I am learning what it means to be unshakable and lack nothing because God is everything.

So that's my OneWord for this year...VICTORY...let's go 2016!

What is your OneWord or New Year's Resultion?