Monday, January 26, 2015

What is MCAS?

So what is Mast Cell Activation Syndrome and what does it mean for me? Hopefully this post will be a good overview and explain what we are dealing with.

What are mast cells? Mast cells are a part of the immune system. They are made in the bone marrow and are located pretty much everywhere in the body. Each mast cell contains "mediators" which are chemicals that are released when the mast cells are triggered by something the body is allergic to or identifies as foreign. They are an essential part of the immune system and help defend the body against disease, aid in wound healing, repair blood vessels, and have many other protective roles within the body.

Sounds good so far, right? Everyone has and needs mast cells, including me. The problem I have (MCAS) is that my mast cells are not behaving properly. Like I said before, mast cells are located pretty much everywhere in the body. They are in especially high concentrations in areas where the body and the environment meet, such as the lungs (breathing air), the skin (touching things), the GI tract (eating food), etc. Normally, mast cells would sense something bad, react by attacking it with an immune response, and once the threat was neutralized, return to baseline. In my case, my mast cells are hyperactive. Think little boys at the start of a race and they are so eagerly waiting for the "GO" that they keep false starting. That's why my mast cells are doing. They keep jumping the gun and initiating a mast cell response at times when they shouldn't.

When a mast cell is triggered, it releases mediators into the blood. Some of the major mediators released are histamine, tryptase, prostaglandins, and leukotrienes. When they are released, these mediators attack the foreign invader to keep it from damaging the body. Once it is neutralized, the mast cells stop producing these mediators until the next trigger. However, in the case of MCAS, because the mast cells are triggering in response to things that are not legit invaders, there is nothing to stop the release of the mediators, meaning it continues until it turns into a full blown allergic reaction (potentially all the way to anaphylaxis) or is treated with mast cell stabilizing medications and allergy medication. Depending on the person, the triggers can be anything from typical food or environmental allergens (milk, wheat, smoke, etc.) to completely random things such as cold/heat, pressure, or vibration.

MCAS is not an auto-immune disease. Auto-immune diseases mean the body is attacking itself. My body is not attacking itself, it's just attacking everything I come in contact with...it's trying to be helpful! Yeah, no...

Anyway, because mast cells are located throughout the body, symptoms are multi-system and can be very different between patients. Often, MCAS patients are diagnosed with multiple conditions that seem slightly but not really related in the diagnostic process. Because symptoms can be so varied, patients may see multiple specialists that focus on their area of expertise. In my case, I was diagnosed with POTS and Reflex Syncope (RS) by a neurologist, Gastroparesis (GP) by a gastroenterologist, asthma by a pulmonologist/allergist, you get the picture. It wasn't until I saw a doctor who was familiar with more systemic conditions that we were able to pull all the pieces together.

I still have POTS and RS and GP, but they have become SYMPTOMS and not diagnoses in and of themselves. They describe the mast cell reactions that I may be having in different organ systems. Ideally as we find an effective treatment for MCAS, the issues I'm having in regard to these other issues will resolve as it is likely that MCAS is the cause of the POTS/RS/GP/etc.

So the big question...what does this mean long term? It means hopefully when we get to what would be considered "long term" I'll be doing way better than I am now because we will have figured out an effective treatment by then! =) But all kidding aside, it doesn't change much. There is no cure right now. However, there are numerous effective treatment options that I will be trying to find what combination works best for me. This will be something I will have to manage for the rest of my life, but it is not progressive or degenerative. It is likely that I will have periods of time where I am completely "normal" and have minimal symptoms (hopefully sooner rather than later!) and other times where my symptoms are a bit more severe and less controlled. The key will be identifying my triggers and managing my symptoms as best as possible. It will be a bit of trial and error until we find what medications are going to be the best for me, so it's still of a bit of a long road, but at least we know we are actually addressing the CAUSE and not just symptoms now.

I hope that answers a bunch of questions about what MCAS is and what that means for me and my family. Like I've mentioned many times, I'm not all of a sudden magically better. I'm still dealing with symptoms on a daily basis right now, but we are FINALLY moving forward however slowly that may be. If anything is unclear or you have more question, PLEASE ASK! I have no problem answering questions!


Thursday, January 22, 2015

Rejoice!

How many doctors does it take to screw in a light bulb? Or just diagnosis a patient with unusual medical conditions...In my case it happens to be:

2 primary care doctors
3 pulmonologists
2 cardiologists
5 gastroenterologists
2 neurologists
1 nephrologist
2 endocrinologists
1 hematologist
3 chiropractors
1 acupuncturist
4 dieticians

22 doctors spread over 5 states...and that doesn't include the numerous doctors, residents, and nurses I've seen in various ER visits and hospital stays or the ones I've forgotten about...so 22+ doctors...in 7-8 years...and the number of appointments I've been to is probably somewhere in the 6000 range...okay, maybe not that high...but maybe it is...I stopped keeping track after 1457...haha, just kidding!

But all joking aside, WE HAVE A DIAGNOSIS!!!!! Oops, sorry for yelling...just kidding, SORRY NOT SORRY!!!!! I am sooooo thankful to be able to write this post!!! =) =) =) =)

I'm sure you're all waiting just as eagerly as I was and about to fall out of your seats in anticipation...so here's what's going on...I have Mast Cell Activation Syndrome (aka MCAS). I will dedicate a specific post later about the details of this condition, but I have been waiting to write this blog FOREVER (okay not really but you get the idea), so I didn't want to wait.

What could be a SUPER long post made VERY short...I am so thankful! We finally have some answers and a diagnosis that will hopefully make managing my health much easier now that we know what I am up against. Thank you so much for your continued prayers on this journey, but please don't stop now! While this does feel a bit like turning the page on one chapter of my life, we are also beginning a new and very long season. There is no cure for MCAS, so I will be beginning/continuing on treatments designed to control my mast cells and hopefully reduce my reactions. Initially it will be a bit of trial and error as we attempt to figure out what the best course of treatment will be for me. So the waiting is not yet finished...but I am so thankful to be moving into a new season that will hopefully be much brighter than the last one.

"Weeping may stay for the night, but rejoicing comes in the morning!" Psalm 30:5

Thank you for rejoicing with us!

Wednesday, January 14, 2015

It's not ALL bad

Nothing new on the health front unfortunately. Still waiting to hear back from doctors...should be by the end of this week, so only a couple more days...what's another two days after 6+ months, right??

I got a call last week about the biopsy results we have been waiting on. When we were in MN in December, the biopsies had been reported in a different manner than Dr. Afrin was used to/expecting to see so he wasn't sure what to make of the percentages the lab had reported. When Dr. Afrin's nurse contacted the lab to get actual count numbers instead of percentages, the lab said that the quality of the stains might not be good enough to be able to give count numbers...figures...so that is what I'm waiting on. We are waiting to hear back from the lab whether the biopsies give us what we need or if I will need another endoscopy. Please be praying the lab is able to give Dr. Afrin the cell counts he needs for a diagnosis and that I will not need another endoscopy. I do NOT handle anesthesia well, so any time I have to be knocked out, it is NOT good.

Still trying to sort out my GI issues. Started a new medication this week...nothing to report as of yet...I go back to Pittsburgh in 2 weeks and will be able to sit down with my GI doctor again and make some decisions regarding treatment going forward.

Health aside, or even in spite of it, the past couple weeks have been good (well, except for the 2 ER visits last week...I forgot about those =P). Classes started back up on Monday. Or at least they were supposed to...but we got a SNOW DAY!! Okay, so it was really only a half day, but I took a whole day and didn't feel as bad since everyone was off for the morning. I wasn't feeling great on Monday and we only had one car since mine was in the shop, so it worked out well! It was kinda nice to sit at home and watch it snow through the windows and work on some grant proposals I have due at the end of the week. In the evening I had my first Bible study for the new year, then watching the first half of the National Championship game that Ohio State won! Go Buckeyes!

Since Monday was a snow day, my first day back for classes was yesterday. I am teaching statistics labs this semester, so I had my first lab yesterday afternoon. So far so good =) I spent a lot more time yesterday working on the grant proposals...I think I bit off more than I can chew with that...way more overwhelming than I expected, but I'm this far in, I'm determined to finish this grant on time! It's due Friday, so I'm going to make it!

Today I had my IRB meeting for my dissertation. I know, lots of PhD talk. Basically my dissertation is a big research project. The IRB is the Institutional Review Board that makes sure any testing that is going on is safe for the participants in the study. Some projects are easier than others to get approved...but mine seemed to go well and hopefully will be officially approved within the next week or so! Very exciting news! After having such a rough semester health-wise last fall, I made very little progress on my own research because any energy I had went toward the classes I was teaching. It feels good to be starting off this semester moving forward with my dissertation. Hopefully that continues throughout this semester, but at least it's starting well!

Tomorrow is another day of teaching labs and working on my grants. One is due Friday, that's the big overwhelming one that is way bigger than I expected. The other is due on Monday, but after finishing the first one will feel like a piece of cake (or in my case, a sip of a smoothie =P)! It's been a busy and draining week so far. I'm still struggling with not having a lot of energy and not sleeping well because of stomach issues, so I'm tired A LOT. But I try not to show it and push through as best as I can until I get home to crash on the couch. It feels good to be accomplishing things even though it's taxing and wears me out.

So that's what's up! Nothing much to report other than every day life...what a concept!?!? I've been feeling much more encouraged this week and more positive in general which I think has helped this week go better overall. I'm trying to find little things to be thankful for throughout the day even when I feel sick and worn out. Today I was thankful that my car got a new radiator because now I have HEAT again!!! With the subzero temperatures, this is definitely something to be thankful for! I was thankful for a good IRB meeting, making progress on my grants, and different flavored popsicles. Little things sometimes =)

As always, thank you for praying! Hopefully we will be hearing back soon from the doctors and have news either way.

What have you been thankful for this week?

Tuesday, January 6, 2015

OneWord 2015

I first heard about the OneWord challenge when I was very involved with Fellowship of Christian Athletes (FCA) a few years ago. The idea of this challenge is to choose "one word" as a theme for the upcoming year. Instead of making a list of resolutions, it's choosing one word to focus on. Instead of making a list of things to accomplish or fail at, it's a chance to choose something to focus on over the course of the year and see the growth that comes in that area. This will be my third year choosing my OneWord.

In 2013 I chose FOCUS as my word. The reason I chose this word was because I can be very stubborn and sometimes lose focus. I can lose sight of what is important and fixate too much on temporary things. By choosing focus as my word I wanted to keep my focus on God as my priority and keeping everything I did in perspective of what will matter in eternity. I definitely had a lot of ups and downs, but I did notice that I became more aware of where my focus was throughout the year. This was my first year doing the OneWord Challenge, so I wasn't sure what to expect, but it was cool to see growth in this area of my life even in just choosing this word as my theme for the year.

For 2014, I chose AUTHENTICITY. To be honest, when I chose this as my word last year, I wasn't entirely sure why. I was praying about what word to choose and I couldn't come up with anything. I finally started thinking "authenticity" and that was it. I had no idea how it would play out throughout the year. And it wasn't until just a few weeks ago, actually, that I realized how authenticity fit into my 2014. There were multiple times throughout the year I'd look over at the poster I made and wonder how I was going to explain why I chose this word. But as last year came to a close, I realized a way that I HAD become more authentic over the course of the year. Instead of hiding my chronic illness, I'm open about what is going on (at least more than I was). Instead of pretending to be someone I'm not, I'm honest about how things are going and how people can pray for me. It has been a challenge to get to that point, but looking back, I can say that becoming more authentic about my struggles has been good!

This year was easy...my word for 2015 will be HOPE. Bet you didn't see that one coming =P Haha, yeah, I don't feel like I chose this word, but that it chose me. This my theme for this upcoming year that is starting with a lot of unknowns and outstanding questions. Recently I've been down, really down. I know that God always promises that in our weakness He is strong, but when I feel weaker than ever in so many ways (physically, spiritually, emotionally, mentally, how many other ways are there??), sometimes I just feel like I'm getting hit when I'm down.

I don't understand why things have to be so hard, or why I feel like I'm in a snow globe that's just been shaken and I don't know which way is up. I'm not mad at God for my circumstances, but that doesn't mean I don't ask Him why it has to be so hard sometimes...and in those moments all I can do is HOPE in God's promises.

Isaiah 40:31 - "But those who WAIT upon the Lord shall renew their strength; He will raise them on wings like eagles. They will RUN and not grow WEARY; they will WALK and NOT FAINT."

GOD HAS PROMISED HEALING. I know I mentioned that before in my blog, and I hold onto that promise. How much more can I relate to this verse recently than in years past...waiting...I know what that is like...running and not growing weary...how I look forward to that - having my illness take away the running I used to do has been HARD, but one day, I will run again and not grow weary...maybe I'll even run an ULTRA! (anything longer than a marathon for non-runners reading this =P)...walking and not fainting...doesn't seem like much until you can't walk down the hall without blacking out (or actually passing out like I did this morning, fun fact! haha)...how I look forward to (and wait eagerly for) the day of complete healing!

Hebrews 10:23 - "Let us hold fast the confession of our HOPE without wavering, for He who promised is FAITHFUL."

We are commanded to hold onto our hope of God's promises because He is and always has been faithful to fulfill what He said He would do. So I do that. I am reminded of healing when I don't see it or feel like things are getting worse and not better...and I try to remember that God is purposeful and present in my suffering. Just because I don't see how things are playing out, doesn't mean that my struggles don't somehow have a purpose or reason for why I'm dealing with them.

The last verse I chose is one of my favorite verses in the whole Bible. If you haven't read the story of Shadrach, Meshach, and Abednego (or Rack, Shack, and Benny for all you Veggie Tales folk =P) check out the book of Daniel. Quick summary, S, M, and A refused to bow down to the king of Babylon because they told him they only worship the one true God. He got mad and decided to have them thrown in a fiery furnace. These next verses are their response to king Nebuchadnezzar (Mr. Nezzer in the Veggie Tales movie).

Daniel 3:17-18 - "If we are thrown into the blazing furnace, the God whom we serve is able to save us. He will rescue us from your power, Your Majesty. But even if he doesn't we want to make it clear to you, Your Majesty, that we will never serve your gods or worship the gold statue you have set."

WOW. This verse gets me everytime I read it...maybe I should read it more often...haha...Anyway, what I love about these verses is that S, M, and A recognize that God CAN save them. At the same time, they recognize that just because God is ABLE doesn't necessarily mean that He WILL. Initially that can seem harsh...why would a loving God not use His power to save the people He supposedly loves? Why would God not heal me if He loves me like He says He does? Honestly, I don't have a perfect answer for that. All I can say is that I know that God sees what I don't see and knows things I don't know. I also know that this life is about more than just me, so somehow I fit into a bigger plan that I don't know about, but God does. So in essence, S, M, and A are saying that they believe God is powerful enough to save them and they believe that He can, but they also recognize that what we want is not always a part of God's plan, and if God chooses NOT to save them from the fire, they still trust Him and believe that He is God. Again, WOW.

So that's my OneWord for 2015! (I know, that's a LOT more than one word, but you get the picture =P) I'm choosing to believe in God's promise of healing because He always fulfills His promises, but even if I don't get the healing that I so desperately pray for, I still trust that He is God and I always have HOPE for what is to come in heaven!

Let's make this interactive! What's your OneWord or New Year's Resolutions?

Sunday, January 4, 2015

2014 Wrap-Up

So right now it's about 9 pm on New Year's Eve. To be perfectly honest, I'm starting this now as a way to attempt to stay up slightly later...no comments allowed =P Anyway, I've been thinking about this post for a while anyway, so now seemed like as good a time as any!

I did a similar post last year (check it out here: http://maintenancerequiredblog.blogspot.com/2014/01/2013-recap.html) so it seemed like a good idea to look back on 2014 a year later. Plus, I found that when I did the 2013 recap, it reminded me of the good times when sometimes the bad and hard times seem overwhelming. Was 2014 a rough year? ABSOLUTELY!! Yes, yes, yes, in every sense of the word! Was 2014 a fantastic year? ABSOLUTELY!!! To quote Charles Dickens, "It was the best of times; it was the worst of times," and I wouldn't trade it for anything!

So without further ado...here's what happened in 2014!!

JANUARY:
High - being in one of my best friend's wedding, starting a new medication that gave me a few months of feeling really good
Low - starting my last semester of classes (love my program, but so ready to be done with classes) still feeling sick,  having to wait 3+ weeks to GET the new medication because the pharmacy had to order it...story of my life

FEBRUARY:
High - snowboarding with my (then) boyfriend and parents, celebrating Valentine's Day/Gastroparesis Awareness Day with my (then) boyfriend by going rock climbing
Low - hospital stay #1 for the year due to what we think is a mast cell reaction to my neighbors cleaning chemicals

MARCH:
High - nothing much happened this month other than, oh you know, GETTING ENGAGED!!!! Also had Seder with both my parents and in-laws (yes, this was a high =P)
Low - is it a good thing that I can't really come up with a low for March??

APRIL:
High - running the Pro Football Hall of Fame Half Marathon with my (then) fiance and parents, starting wedding planning
Low - wedding planning...haha, starting to notice the bad days making a come back...nothing bad yet, but noticing a difference

MAY: 
High - roadtrip to FL with my mom for the annual ACSM conference with my program at school, visiting good friends in GA, PASSED MY COMPS (officially on dissertation phase of my PhD!!!)
Low- more stomach issues increasing, driving A LOT...10 hours back and forth to my parents, about 24 hours back and forth to FL

JUNE:
High - apartment hunting!! Finding a place for me and my husband =)
Low - apartment hunting...trying to find a place that was close to work and school, allowed dogs, had washer/dryer hook ups, and didn't cost us our firstborn child was a bit challenging at times...

JULY: 
High - Dysautonomia International conference, moving into the new apartment
Low - health getting worse again...new apartment (I hate moving...haha)

AUGUST:
High - having my mom come out to visit in the new apartment, finalizing wedding plans
Low - starting to feel really sick and having to switch to a mostly liquid diet

SEPTEMBER:
High - GETTING MARRIED!!! Enough said.
Low - Our first ER trip as a married couple...and so it begins

OCTOBER:
High - loving married life!! 
Low - hospital stay #2 (after 3 more ER visits)...this time for GP, one of the worst hospital experiences ever...

NOVEMBER:
High - really good doctors appointments in MN (Dr Afrin) and WI (Dr Chelimsky), feeling like we are finally making progress toward a diagnosis, Thanksgiving with my in-laws
Low - very sick, falling behind in school becuase I'm sick...delaying my graduation because of illness, LOTS of travel from OH to VA to MN to WI

DECEMBER:
High - Christmas Eve with my in laws, Christmas and New Years with my parents, ending the semester (finally...longest semester ever)
Low - still no test results...still waiting...hospital stay #3 from a seizure I had from a medication change...

Healthwise, 2014 was a crappy year (pun intended...) but also a year where I feel like we have moved in a much more positive direction in terms of treatment and diagnosis than in years past. Outside of health issues, 2014 was fantastic!! Obviously getting married was a big part of that =) =) and I wouldn't trade that for anything!!! Not even a year of perfect health...and I mean that. 

As hard as this year has been and as many tears that have been shed, I can still look back and see all the positive that also played a part of making 2014 a year to remember. That being said, my New Year's resolution is to stay out of the hospital and away from doctors in 2015!! Although considering I have an appointment on the 2nd...I think that resolution will fail faster than all the new gym committments...oh welll...there's always next year!!! Haha

Happy New Year!!!