Tuesday, February 21, 2017

Four Weeks in Coming

If you live with a chronic illness, than my guess is that you've had AT LEAST one incident of insurance company frustration or pharmacy confusion or inconvenient doctor absences. If you're me, then you've likely experienced all 3...at once...right when we had major stuff to resolve...seriously, if dealing with being sick every day wasn't a full time job itself, then spending hours on the phone certainly is.

Since my recent flare started back in November, we've been desperately trying to get things back under control and me back to where I was in September and October when I went to Disney and Yosemite. Despite having no idea what sent me into this downward spiral, we still had to try SOMETHING as I was rapidly losing all the progress I made from Feb-Oct of last year.

First up was seeing what we could do about my GI tract. Since initially, the first symptoms to reappear were GI issues, that was where we went. After my admission just before Thanksgiving, we knew something had to give and fast. In December we changed out Herman III to Herman IV to see if that was the answer (spoiler alert: it wasn't). During another admission in January, the GI there said that he felt I needed access to IV medication since it was clear that my gut was just not absorbing my oral meds at that point. A week later, I spoke with my allergist and he agreed. And so began a month long process of trying to get said medications approved...more on this later...

In addition to needing IV meds, we also realized that my time with the GJ tubes was rapidly coming to an end. For multiple reasons, it was time to separate my G and J tubes, and at the end of January, I had surgery to change Herman to a G button and to create a new stoma for Sherman, my new J tube. I am happy to report that this surgery DID resolve all the tube issues I had previously been having. It did nothing to improve my absorption, but I do now have a referral to a pancreas specialist who I will see in April. Hopefully we'll be able to get to the bottom of some of these issues, but in the mean time, the IV meds because even more important to just get me to that appointment.

Before I get back to the long, drawn out, complicated, frustrating, confusing, month-long process of figuring out how to actually get the IV meds that my doctor had prescribed, here's a little background ...since this flare started, I had not gone more than 5 days without being in the ER or hospital (until this past week!!! Read on to find out the length of my current streak!). When I was having all the tube issues, if I started to have a bad mast cell reaction I would go to take my emergency medications. Half the time my tube would be kinked, clogged, or for all intents and purposes just not working. This meant I had no way to stop the snowballing reaction and ended up needing my epipens way to frequently.

After just 6 weeks of relentless mast cells, on going reactions, and way too many ambulance rides, my peripheral veins were shot. One particularly bad reaction I ended up needing 3 doses of epi simply because they couldn't get IV access in time to prevent the rebounding reactions. Five days before Christmas I had surgery for Mort the port to give us central access for the majority of the ER trips and hospital stays so we could salvage what was left of my peripheral veins for these actual anaphylaxis emergencies and the EMTs. Having Mort meant that the option of IV meds that the GI doctor had recommended while inpatient was an actual possibility. The only challenge was just figuring out how it would actually work...

And so began the fore-mentioned month of frustration, confusion, and me realizing that I appeared to know more about the inner workings of my health insurance company than the actual employees did. At my appointment in January I got a prescription for not just IV meds, but also at home IV fluids and electrolytes. Since he was in the same hospital system as the infusion pharmacy we were going to use, it *should* have been a simple matter of putting the orders in their online system. And for the fluids and electrolytes it more or less was. We had a minor hold up with them not wanting to approve home infusions but wanting to have me come into an infusion center. The other issue was them not wanting to teach Nick and me how to access Mort ourselves which we felt was important for my overall care and independence. We got that straightened out *relatively* easily. The main hold up was the IV meds...

First time accessing my own port!
Now, let me explain that the IV meds my doctor has prescribed are NOT protected substances. One can be bought by 10 year olds OTC (benadryl) and the other is given like candy to patients going through chemo and other conditions likely to cause nausea (zofran). They are not narcotics, they are not controlled, and even my doctor commented that he watched someone try to OD on one of them and only ended up sleeping for hours and a serious cotton mouth. Yet when we tried to get these things approved, it was way more complicated than we would have imagined. The infusion company providing the fluids and electrolytes said they only provide benadryl as a pre-treatment option before antibiotics or other infusions known to cause potential reactions. They could not provide it as a stand alone order...even with my doctor's prescription...

So that meant we had to figure out another way to get the IV meds. I already get my Xolair from a specialty pharmacy through my insurance company, so we thought that might be our next option. Depending on who I spoke to, I was told that we could get the meds there and that I couldn't. Talk about confusing...it got even more confusing when my case manager with my insurance company was told different information than I was...

It took two weeks, but we finally figured out that yes, the specialty pharmacy was in fact the place to send the scripts. The next hurdle was figuring out whether or not the meds would be covered by my policy. Again, mixed messages...first I was told it would be covered as a Tier 2 medication, then my case manager was told that they wouldn't be covered at all. The next morning I called the pharmacy to start the appeal process and instead of being told how to go about filing the appeal, I was told that the meds had not only been approved, but were covered at 100% and had already shipped!

Unfortunately, because they are IV medications, they had to be shipped to my doctor's office unless there was additional authorization from my doctor to ship directly to my house. We figured this was just something minor to resolve until I called the office to pick up the meds...only 1 vial had shipped...and that vial was only a single dose...of course this happened on a Friday, too...


Monday morning, I thankfully had an appointment scheduled with my doctor in addition to my standing Xolair injection. By the time I left, we *hoped* we had finally gotten everything resolved. I gave the specialty pharmacy until Wednesday to process the new scripts. When I called they said that yes, they saw the new scripts, but it was still showing that they had to ship to my doctor. Another call made to my doctor's office...side note, the nurses can now recognize my voice before I even say my name...

They called me Thursday morning saying they spoke to the pharmacy again and confirmed that there was authorization on file for it to ship to my house. Back to the pharmacy...I was told, yet again, that I needed additional authorization to ship to my house...we went back and forth a couple of times before they finally found it buried in my file. Then I was told it would be 3-5 business days of processing. I very nicely pleaded with them to expedite things. I explained how long this process had been and how badly I needed these meds. The lady I was speaking was very helpful, and 30 minutes later the 3-5 days worth of processing was done. She told me they would ship out that afternoon and I would have them the next day!

When nothing had arrived by 4 pm the following day, I figured that yet again, they had shipped to my doctor's office and I'd have to wait until Tuesday (why does this ALWAYS happen on the weekends???). At 5:30 pm I got a call from the pharmacy...the meds had not shipped out on Thursday like they had originally told me because they discovered they were out of one of the meds. They DID ship out on Friday and would arrive before noon on Saturday. At this point I wasn't believing anything until I actually had the meds in my hands...


Thankfully, I am very happy to be able to report that the meds did, in fact, arrive Saturday morning around 9 am. Since then, I have already had the opportunity to use both the benadryl and zofran in situations that otherwise might have escalated to anaphylaxis and uncontrolled vomiting. I wish I was not in a place where I need IV medications at home, but right now, I'm so very thankful to have this option.

A MONTH after this process started, it has finally been resolved...I understand there have to be policies and procedures in place, but I'm not so sure they are working in the best interests of the patients...it should NOT have been this difficult! How many epipens could have been avoided in that time? How many ambulance rides would not have been needed? I could write another whole post on the insurance issues that arose just with this issue (and every issue I've had could be its own blog altogether...), but I'll spare you the gory details. =P

Instead I'll end with sharing that I now have a new record!! I'm going on 9 days without an ER trip or ambulance ride. That is largely due to having these IV meds, and we are hopeful that in having benadryl and zofran as options, this streak will continue to increase!

Friday, February 17, 2017

Mast Cell Humor for Valentine's Day

In case you missed it, Valentine's Day was this past week. I am so thankful to have married a husband who is equally as uninterested in this holiday as I am. We did absolutely nothing to celebrate. And it was wonderful!

That evening, after a very, non-romantic, but no less love-filled dinner (aka, Nick ate and I had some broth), we were catching up on the new season of 24. I started texting a mast cell friend who had posted a funny "mast cell valentine" on Instagram with some of my own mast cell humor. That snowballed into some very bad (or amazing!!) mast cell jokes that are only appropriate to share with loved ones who understand the unique life that is lived with mast cell disease.

Our brilliance in coming up with these "pick-up lines" or endearing poetry or rewritten Taylor Swift and Carrie Underwood songs, was too incredible to keep to ourselves. We *might* have just discovered our new career path...So consider yourselves warned! Haylee and I hope you enjoy some of our mast cell humor courtesy of Valentine's Day:

My love for you flows as freely as my GI tract during a reaction.

Flushing is red,
My lips are turning blue.
Please stab me with my epi,
So I don't leave you!

I decided to save money on buying a card, so instead I wrote a message on my skin. #dermatographia

Only you know the way to my heart...through my port and catheter.

You're more attractive than a lifetime supply of Benadryl!

All I need is you! Or at least your steady hand to stab me with epi and give me IV meds.

*Goes out to dinner* This food is to die for! No literally, my throat is swelling and I can't swallow...

The memories of you are stronger than my brain fog.

I'm crazier for you than I get during mast cell reactions!

When I think of you, my heart races like I just stood up.

Being in the same room as you takes my breath away...seriously, you must be wearing some perfume...

You make my adrenaline pump for than epinephrine.

I fall for you more than I fall from reactions.

Losing you would hurt more than losing my bowels.

Missing you like I miss my life before mast cell disease.

Your love makes me weak at the knees...or maybe that's just my neurological issues...

Life with you is as perfect as finding a temperature that is neither too hot nor too cold.

My love for you swells more than my body in anaphylaxis.

Your love is electrifying...oh wait, that's just my neuropathy.

I'd give up all my medications for one more day with you. Although without my meds I wouldn't have one more day to spend...

You make me loopier than a double dose of IV Benadryl.

You're so hot you give me a heat rash.

I love you so much I'd stay up thinking about you even if I didn't have painsomnia.

Sung to the tune of You Belong with Me by Taylor Swift:
Mast cells try to kill us, we fight back with epipens.
Flushing, rashes, hives, and more; so much for a good weekend...
Dreaming 'bout the day when we wake up and find
That mast cell disease was just a nightmare this whole time!

Sung to the tune of Before He Cheats by Carrie Underwood:
I stabbed my epi into the side of my quadriceps muscle in my outer thigh.
Kept myself from needing a code blue.
You injected my meds into my central line,
I'm conscious again and we bought more time.
Maybe next time I'll think twice before I eat...

Hope your day (and love life =P) has been enriched by our incredible brilliance and potential new careers in mast cell humor greeting cards! We certainly got some good laughs out of all our texting. Yes, life with mast cell disease is often very tough and difficult. But it has also brought me friends I wouldn't have met otherwise and moments of laughing so hard I wake up the next day sore at my less than 3 week old incisions from abdominal surgery. Don't forget to find reasons to smile and laugh in every day!

Friday, February 10, 2017

Plot Twist!?!?!

Living with a chronic illness is a constant roller coaster of ups and downs. And I don't mean just physically. There is so much else that goes on behind the scenes spiritually and emotionally that we have to process and deal with on a daily basis along with managing our physical symptoms.

Spiritually we deal with doubt, fear, worry, friends dying, holding on to hope when things feel hopeless, clinging to joy when things are crumbling around us, prayers with tears streaming down our face...doesn't mean we're not trusting that God is in control or questioning His love for us, just means that we are living in a broken world, and in dealing with broken bodies as well, sometimes feel the weight of that a bit more than we might without being sick.

There's an emotional aspect of being chronically ill, too. We deal with isolation from being unable to get out and spend time with family and friends. We have to grieve who we used to be when we lose the ability to do things we used to love. We struggle with the guilt of seeing the people we love most having to watch us suffer through sometimes relentless symptoms and be unable to do anything to help. We deal with the up and down emotions of hope and discouragement every time we want to try something new only to have yet another failed treatment option.

It's tough. No way to sugarcoat it. But we learn to live with it. Just like everyone has to figure out how to deal with whatever is going on in life, we cry, process, cry some more, then pick ourselves up and keep going. I have met many people through shared chronic illnesses and similar symptoms, and they are some of the strongest people I know. But no matter how strong we can be in the face of our diseases, there is one things that never seems to fail to do its best to defeat us...

Insurance companies.

Talk to any chronic illness patient and you are almost guaranteed to hear at least one (often many more) stories of insurance battles, denials, appeals, and living in limbo waiting for people sitting safely behind desks to make decisions that impact our lives.

I have fought multiple battles with my insurance company. Most of those have ended in us losing and being forced to pay for necessary treatment out of pocket. It's a catch-22 for me. My insurance coverage for *almost* everything is fantastic. I have a low deductible and out of pocket maximum (especially compared to ACA plans), don't need referrals to see specialists, can travel out of state for care with no pre-authorization...I know I am so blessed with the coverage I have. Yet even with the coverage I have, I have still fought for treatments I desperately have needed.

The first major battle was for my feeding tube formula 2 years ago. I had my NJ tube placed and was sent home to have a nurse teach me how to run my feeds and care for the tube. Prior to the tube being placed, I had asked for (and received in writing) my coverage for feeding tubes. We thought we knew going in what my responsibility would be and what my insurance would cover. The first issue was when my insurance company said I HAD to try one of the lowest cost formulas before they would even consider paying for a second tier option...despite that fact that NONE of those formulas were free of my allergens. I had to choose between certain anaphylaxis (milk based formulas) and GI pain with swelling and joint inflammation (soy based formulas) for a week so my nurse could document an adverse reaction and we could get a second tier option approved.

After a week of feeling awful, my nurse agreed that it was time to try a different formula. We decided to try an elemental formula that my specialist said worked well for the majority of his mast cell patients. My home care company didn't carry it, so we decided to just buy a case ourselves to try until we could find a company that we could get it from. Little did we know that would be the first of hundreds of cases that we would pay for out of pocket over the next 2 years...

In processing our request for a second tier formula, my insurance came back and said that formula was actually not covered at all under my policy...despite the confirmation I had been given only weeks before (in writing I might add) that it was covered. We showed them the documents THEIR REPRESENTATIVES sent me stating it was covered. Turns out the confirmation they sent was not for my policy but a similar plan with a different group ID. They denied payment again. We appealed and so began a year long battle that ended with an external appeal and lawyers that were unable to do anything to reverse the decision. Since my first tube was placed, we have paid for over 125 cases of formula out of pocket...and will have to buy who knows how many more as I continue to need Herman and Sherman for nutrition.

A success story of one appeal we had to go through happened just last year. Dr. Afrin and my local allergist had recommended Xolair as a potential treatment option that they felt could really be beneficial for me. My allergist filled out all the paperwork for the authorization process and a few weeks later, it was denied. Round 1 of the appeal was also denied. On our last chance for internal appeal before we would have to take it to a lawyer for an external appeal, we were able to provide enough physiological data regarding my symptoms and the benefit seen in clinical trials that we finally won the appeal and Xolair was approved! Six months after we first requested authorization, I got my first injection and had a significant improvement in mast cell disease management for the better part of 2016. In those 6 months of appeals, I had 2 hospitalizations and countless ER trips...who knows how many of those could have been avoided if they had just approved the injections the first time???

These insurance battles are draining and exhausting and an emotional (not to mention physical) roller coaster. As a chronic illness patient, it can be so frustrating to know that my healthcare is not really in the hands of my doctors, but in the control my insurance company. They are the ones making the call of what treatment options we have, what meds get approved, and if we really get down to it, how much my life is worth to them. People in business suits who have degrees in public health and healthcare administration are making decisions that impact OUR LIVES, yet they have no idea what we face on a daily basis. A simple click of the mouse and life saving medication is denied. One word typed on a keyboard and a patient is forced to choose between quality of life and astronomical out of pocket expenses. It can be tough sometimes to remember that our insurance companies are not in control of our lives...

Because God is.

With the flare I've been in recently, things have been rough. My allergist prescribed home infusions with electrolytes and IV meds to hopefully give us better control of my symptoms at home and keep us from needing to rush to the ER as often. While we hoped this would help us manage my mast cells better, the orders also began what we thought would be yet another few rounds with my insurance company. And again, we faced the denials that seemed to come in so easily...so many times...yet every time, God intervened and things became smoother sailing than we could have imagined. It was like staring at a spiritual battle between Satan and Jesus, and every time it seemed that Satan got the upper hand, Jesus would come through for a huge victory.

We had an issue with my port access and the infusion company not allowing Nick and me to fully care for my port and infusions. We thought we were going to have to jump through a gazillion hoops just so I could be allowed to be in control of what was going in and on my body. I even started looking at other home infusion companies in the area to see if it might just be easier to switch everything over. We spend a LONG frustrating week trying to get answers and resolve the issue and with many people praying. When the nurse came out the following week, I again brought up the issue fully prepared with all of our reasoning and backing of my doctor and case manager. It was resolved within 30 minutes and 2 quick phone calls. What had been a huge road block only a week before was only a minor issue that was easily resolved. The nurse said the other nurse apparently just didn't know their policies well. That may have been the case, but either way, God still came through in a big way when we didn't see how this could possibly work out.

Another issue arose over the IV medications my doctor had prescribed for me. First, no one seemed to know where the prescription needed to be sent for it to be filled. My infusion company said they couldn't fill it. Local pharmacies said it was a specialty prescription so they couldn't fill it. My specialty pharmacy first said that they couldn't fill it either, but then said they needed the order directly from my doctor who was out of town. It was a mess. We finally got it straightened out and the order was faxed over. Then my case manager got a call Tuesday evening stating that based on my insurance plan, coverage for the meds was denied. Again, we prepared for a long drawn out appeal process. When we were dealing with the formula issue, it was months before everything was settled and we had officially lost with no other appeal options. I couldn't wait months or I'd continue spending every 4-5 days in the ER for anaphylaxis or other mast cell related issues. We started calculating how much we would have to pay out of pocket if we had to go that route. I added up the total costs of my ER trips just in 2017 to present to my insurance to see if we could persuade them that paying for a $3 dose of a medication throughout the week was so much cheaper than the $6k-$9k ER trips every 4-5 days they were currently paying for. We were prepared to get my doctor and case manage involved to advocate for me. I began collecting data to be ready to go to battle yet again with my insurance company. And we kept praying.

The next morning I called the specialty pharmacy to confirm what my case manager had been told the night before and to get the appeal process started. When I asked about the status of the IV medication, the representative informed me that it had shipped the day before and would arrive the next day. I thought I had misheard what she said. She repeated herself and said the meds would be delivered to my doctor the next day (apparently there was another round of authorization needed for them to be shipped directly to me, but that was such a minor issue at this point). I asked what my out of pocket cost and/or copay would be and she told me that it was covered at 100%! I didn't even know what to say. I had her repeat everything one more time, then thanked her and hung up. It seemed too good to be true, but yesterday I picked up the meds from my doctor (or at least a partial order...we still have stuff that needs sorted out...one step at a time...). God again intervened in such a huge way we never could have expected.

The past 2 weeks have been a crazy roller coaster of ER trips and good days at home as well as moments of discouragement being replaced with hope as these insurance issues were being resolved. One of the toughest things to deal with when my mast cells are raging like they have been these past few months is how God can possibly be using this for His glory. How can my life make a difference when I'm stuck at home most days and only see the people I live with? I'll be honest, I still don't have an answer for that. But when I get these moments that I like to call "plot twist" moments where God comes through in huge ways and takes a situation that seemed to have no good answer and flips it 180 degrees into something better than we could have hoped, I'm reminded that God has not forgotten me. My life still has purpose and that's the greatest plot twist of all. That God could take my life and do anything with it is even more amazing that Him resolving insurance issues.

A few weeks ago, my mom shared this song with me and was successful in making me cry even before I got out of bed that day =P The truth in this song was exactly what I needed to hear then, and still now. God's plan is still to prosper us. He has not forgotten us, no matter how complicated life may seem or how hopeless a situation may feel. It might not always feel that way, but we have to remember that God loves us more than His own life. God meets us right where we are in our pain and suffering, and does not allow us to fight our battles alone. We learn to trust Him more when we see Him bring about these plot twists in our lives, however big or small they may be.


Life with mast cell disease (or any chronic illness) will always be a roller coaster...physically, emotionally, spiritually...that won't ever change. Unfortunately, it's not likely that our insurance battles will ever have an end in sight either... =P But God also won't ever change. And because of that truth, we can be strengthened to keep fighting and keep looking for those plot twists that remind us that not even our insurance companies can stand up to our God.

Monday, February 6, 2017

The Rise and Fall of Herman I, II, III, and IV

Today is Day 1 of Feeding Tube Awareness Week! Considering I now have 2 feeding tubes, I thought it was only fitting that I write a post to spread some awareness about mast cell related digestive issues and feeding tubes!

It has been almost exactly 2 years since I had my first feeding tube placed. For those of you who have been around this blog (or my life =P) for that long, you may remember Herman I, the NJ tube. NJ stands for nasojejunal and meant that this tube went down my nose (naso) into the middle portion of my intestines (jejunum).


After 2 months of being unable to blow my nose without making a huge mess and feeling like a fish in a fishbowl any time I was in public, Herman I became Herman II and I had my first surgical tube placed. For the past 2 years I have had what is known as a GJ tube. This was a 2-for-1 deal. I got 2 tubes but only needed 1 hole! The G portion of the GJ was the larger of the 2 tubes and entered my stomach through the hole my GI doctor poked in my abdomen. The J portion of the GJ was the smaller of the tubes and ran down the inside of the G. It passed through my stomach into my small intestines and ended right about the same place that Herman I did in my jejunum.


Herman II lasted me a year, and then it was time to change him out. The material the tubes are made out of are not indestructible, especially when combined with stomach acid and formula and whatever else it may come into contact with (food, drink, medications, etc.). Eventually, the tubes will break down and they will need to be changed out for bright and shiny new tubes. Herman III was identical to Herman II, and also served me well during his tenure.

However, due to a major increase in GI symptoms a few weeks before Thanksgiving, Herman III ended up on the chopping block sooner than we expected. With no real indication of what was causing the increase in symptoms, my doctors felt that there was a chance that the stitches that kept the J portion in place in my intestines had been dislodged which might have been irritating my already touchy GI tract. About 8 months after he was placed, Herman III was out of a job, and Herman IV made his very eventful and very short debut. 


And here is a photo of the black sheep of my feeding tubes...oh Herman IV...how I do NOT miss you. In his one month of glory, Herman IV did his best to align himself with my nasty masties, and unfortunately, was a bit too successful in his attempts. What went wrong? We're not sure. It's possible that when the J portion was stitched into my intestines, the opening of the J tube was right up against the wall of my jejunum which meant that it would periodically (and completely randomly) not work. It is also very possible and likely that the J portion was kinking somewhere along the almost 2 feet of tube that wound through my gut. Again, this meant that when I would try to run my feeds or push medications, it wouldn't work. A non-working feeding tube and cranky mast cells requiring a very precise medication schedule and emergency administration as needed did NOT mix well...It unfortunately lead to multiple bouts of anaphylaxis simply because I couldn't take my meds when I needed to...not cool Herman IV...not cool...

Like I said, our rocky relationship lasted but one short month before the decision was made to take away for good any potential for future kinking or dislodging. While on paper (or screen) that sounds like a great plan, in real life, that meant surgery for me. So a week and a half ago, the reign of Herman IV came to an end and I woke up from surgery to 2 tubes instead of the 2-for-1 deal I had gotten used to over the past 2 years.

I still have a Herman, don't worry! Herman V is now what is called a button-style G tube and still goes directly into my stomach. Nothing really changed at this stoma (aka hole in my abdomen) other than the tube is no longer a GJ, but just a stand alone G. This is the original stoma that was created 2 years ago for Herman II. Thankfully I have had almost no issues with the stoma, so it was an easy change from the GJ to the G button. The tough part was having to have actual surgery to create a new stoma for the stand alone J tube. While many times this placement ends up close to the hip bone, my odd anatomy that made placing the GJ tubes a challenge, actually worked in my favor for the surgical tube. The surgeon was able to place the J tube high in my abdomen only about an inch from Herman V which has helped considerably with my recovery. There is much less muscle to have to cut through in the upper abdomen vs. the lower abdomen. And, after many suggestions were offered and much thought was put into it, I chose to name my new J tube Sherman.


And so begins a new era with Herman V and Sherman. In 6-8 weeks once the stoma for Sherman has healed completely, I will be able to exchange the long tube for a J button similar to Herman. 

It's been 2 years of living with a feeding tube and relying on formula for nutrition. I remember how overwhelming it felt when I woke up with Herman I taped to my face and being taught how to use the pump and care for the tube. What we thought (more hoped) would be a temporary solution has become a (for now) permanent fixture in my life. Do I wish I didn't need a feeding tube? EVERY. DAY. But don't mistake that for wanting to get rid of them. Having Herman and now Herman and Sherman has been one of the best decisions we made for my health. I hope and pray that one day I will be healthy enough to be able to live without feeding tubes, but I'm not waiting for that day to keep living my life.

Since having that first tube placed 2 years ago, I have learned that living with a feeding tube doesn't have to look any different than living without. If anything it makes me the ultimate multi-tasker! When was the last time you ate while paddling a kayak in Alaska? I've been rock climbing, biking, hiking, running, horseback riding, etc. all while running my feeds (plus swimming but can't run my feeds while in the water =P). I've gone on a cruise to Alaska and spent a week at Disney. I've flown to California, Texas, Washington, and Florida while bringing all my tube feeding supplies along for the trip. I've continued working toward my degree, volunteered at church, and helped my mom present at business conferences. And I wasn't able to do all this in spite of having a feeding tube, but because of Herman (and now Sherman, too). My tubes have allowed me to get the nutrition I need to be able to get out and LIVE even when my body won't allow me to eat normally. 


One of the oddest comments I've gotten since having Herman placed 2 years ago is that I look too healthy to need a feeding tube. (What made the comment even odder was that it was made by a dietitian...) I would hope I do...that's kinda the point! Take away Herman and Sherman and I'm left with no way to get any nutrition when my mast cells decide all food (and sometimes even liquids) are dangerous allergens. Before my feeding tubes I was barely able to maintain my weight that was already too low. One day of throwing up and I could drop 5 lbs and STRUGGLE to regain even just a single pound. Even with my feeding tubes, I still go through seasons where I will lose weight rapidly with no apparent reason. Maybe I look too healthy to have a feeding tube, but it's because of my tubes that I can look this way.



It seems fitting that I'm starting off Feeding Tube Awareness Week with a nutrition consult, although I'm not sure if this will end up like the 6 previous dietitians I've seen who either can't offer any help or make comments like I wrote above. Receiving the appointment confirmation that said to bring a 3 day food diary and list of favorite/frequent meals isn't giving me a lot of confidence, but I'm doing my best to keep an open mind...

In addition to this being Feeding Tube Awareness Week, February is also about rare disease awareness leading up to Rare Disease Day on the last day of the month. This year, the theme for Rare Disease Day is RESEARCH, which we so desperately need in the mast cell community. Please, take a moment and share this post! I don't blog just so people will read about what's going on in my life but to share my story of living with mast cell disease. Research can't happen without funding, funding doesn't come without awareness, and awareness comes from those of us living with these rare diseases speaking up and sharing our stories. I might not have thousands of dollars to contribute toward research, but I do have a voice and a story. Please help me share that story so that one day, maybe I can celebrate Feeding Tube Awareness as someone who USED TO need a feeding tube!