Friday, February 27, 2015

Rare Disease Day 2015

It's almost Rare Disease Day!!!

The last day in February each year is dedicated to raising awareness of rare diseases and their diagnosis and treatment. A disease is considered rare if it is believed that fewer than 200,000 people have been diagnosed with the condition. There are approximately 6800 rare diseases identified in the United States. Altogether, there are about 30 million people in the USA dealing with a rare disease which comes to about 1 in 10. Rare Disease Day began in Europe in 2008 and the USA joined in 2009. It has grown every year and in 2014, 84 countries held events to raise awareness for rare diseases.

Mast cell disease is considered a rare disease. It includes multiple conditions that are all mast cell related, such as mastocytosis, mast cell leukemia, and MCAS, among others. While MCAS does fall under the mast cell disease header, it is actually believed to affect more people than are currently diagnosed. However, until awareness progresses to where it is not as difficult to diagnosis due to the lack of understanding, it will fall under the rare disease category.

And that's why I'm blogging and posting on facebook about rare diseases today. It has been about 8 years of symptoms significant enough that I've been seeing many doctors and gone through countless tests to figure out what was going on in my body. I've had doctors tell me there was nothing wrong, had doctors tell me it was all in my head, and even had doctors tell me I wasn't sick enough to see them yet. I've lost friends, had to change how I go about my day-to-day life, had to delay my graduation, and endured many unpleasant medical procedures.

No one should have to go through that just because no one knows about a disease. It's one thing to deal with the effects of having a chronic illness, but when you deal with these issues just because no one knows what's wrong...that's hard to handle. It was in January 2014 when we first started looking into mast cell disease as a possible diagnosis for me. My first doctor was incredibly helpful and one of my favorite doctors ever (and that's saying something!), but she just wasn't familiar with these mast cell conditions. I saw 2 doctors that told me MCAS didn't exist and since I didn't have elevated tryptase, there was not really anything wrong. It wasn't until I saw Dr. Afrin, who is one of the experts in this area, that we finally received the diagnosis this past January, almost exactly a year later.

If my blogging and posting can help just one person avoid 8 years of searching and reach a diagnosis that much sooner...that's why I'm here, on social media. Even in the weeks since diagnosis, I've already connected with 2 other people who have suspected mast cell disease. I hope that my story and experiences can help them ask the right questions and get answers faster than I did. And that's why I blog...to help raise awareness and share my story so that others can benefit from my experiences. So please, share this post, and help raise awareness for Rare Disease Day 2015!!

Tuesday, February 24, 2015

Q and A

So after reading my previous post (if you missed it, you can read it here: http://maintenancerequiredblog.blogspot.com/2015/02/tough-decisions.html) and possibly seeing me around the past few days, you know I have a tube in my nose.

I was really nervous about having to walk around with a tube in my nose, but it hasn't been as bad as I expected. I definitely get that second glance that people make when they see it, but I'm okay with that. It's weird, I get that. I've never seen anyone with a feeding tube, so I don't expect that many people I see on a regular basis have either. I don't mind questions about it at all, either. Actually, I even appreciate questions, because that give me the opportunity to spread some awareness about MCAS and gastroparesis. Plus it takes away the awkward "elephant in the room" feeling that comes when people try to ignore it. So please, don't be afraid to ask questions!!

ANYWAY, the real purpose of this post was to answer some questions about the tube that I've been asked and share a little bit what it's like living with it. Spoiler Alert: probably not a good birthday present option for your kids...just saying =P

Here are some common questions I've been asked since getting it last Thursday. If you have any I don't cover here, comment on facebook or here on the blog and I'll do my best to answer them!

What is it?

I think I've covered this more or less at this point =) It's a feeding tube that goes through my nose, down my esophagus, through my stomach, into the middle part of my intestines. It is providing me with supplemental nutrition directly to my intestines so I don't have to eat all my calories.

Why do you have it?

This one is not as easy to answer. The short answer is my stomach and top part of my intestines are partially paralyzed and do not work properly, so I cannot eat normally without severe pain and nausea. The tube allows me to get the nutrition I need to keep my weight up without having to force myself to eat knowing it's going to cause major problems.

The more complicated answer is related to the MCAS diagnosis I received about a month ago. Mast Cell Activation Syndrome is a systemic condition, meaning it involves multiple organ systems in the body. For me, I have significant GI involvement. Not only do I have extra mast cells in my gut that are hypersensitive, but I also have mast cells also the nerves that trigger the stomach to contract and digest that are hypersensitive. The result is that the mast cells are triggering a reaction in the stomach itself AND causing motility issues by involving the nerves that control motility and digestion. The combination of these two factors causes my nausea, pain, bloating, distention, etc.

How long will you have it?

We are looking at 4-6 weeks. The reason it is in my nose is because it is a temporary feeding tube. There are more permanent options that are surgically placed directly into the stomach or intestines. However, since the purpose of mine is for a temporary "re-set" I did not want surgery. Because we believe that a major portion of the underlying cause are my mast cells, the idea is to give my stomach a reprieve. While I have the tube, I do not have to stress about consuming enough calories to sustain life because they are pumped directly into my intestines via Herman (my tube). This allows my stomach to rest. We are still in the process of finding an effective MCAS treatment. Hopefully, during the time I have the tube we will find a medication combo that works well. Once the mast cells are more stabilized, the idea is for me to transition back to a more normal diet. At this point we have no reason to believe that this is a permanent solution. We are using this a tool to allow my body to rest and recover while we find a long term treatment.

Can you eat with it?

Technically, yes. While right now, I'm not eating a whole lot because my stomach can't handle it, there is nothing about the tube itself that prevents eating. Eating is actually encouraged by the stomach and GI tract follow the same "use it or lose it" concept that applies to other muscles. Just like when you don't work out, you lose muscle, if the stomach is not stimulated at all, it can stop completely. When that happens, it can be very difficult to get it going again. I do eat popsicles (feel AMAZING on a sore throat =P) and drink broth and smoothies right now. As things settle down, I will start adding in soft foods like mashed potatoes and scrambled eggs and progress from there as I can tolerate it.

*Side note* It does feel really kinda weird to swallow with the tube =) I can feel it tug on my nose when I am swallowing a piece of popsicle or smoothie. Just a fun fact for your enjoyment =)

Does it hurt/is it uncomfortable?

Kind of...the first few days were really rough. I had a very sore throat and nasal cavity. At this point it is more uncomfortable. The tube has more or less formed to my nose and throat so it doesn't feel like I'm being stabbed every time I swallow and it hits the lining of my throat. There is still some irritation in my nose because it does shift a bit as I swallow or talk. There is also a big feeling of pressure in my sinuses which is probably the most uncomfortable part right now. So if I sound a little nasally when I talk, that's why =) I'm also having some issues tolerating the formula so far. We are still not sure if it's the formula itself or just my body getting used to tube feeding in general. So things are not 100% yet, but definitely an improvement.

How does it work?

The tube is placed so one end is taped to my face and the other end is in the middle of my small intestine. The part that extends out of my nose is attached to what looks like an IV bag filled with my formula. The formula bag is then connected to my pump. The pump delivers the formula into my tube at whatever rate it is set to. Because my tube goes to my intestine and not my stomach, I have to be on slow, continuous feeds. The intestines do not have the same capacity as the stomach to hold food so not as much can go in at one time. That is why you may have seen me walking around with a backpack that has a tube coming out of it. I have the pump and formula bag in the backpack so I can "eat" on the go. At night, I have an IV pole next to the bed that I am hooked up to. I've only forgotten twice so far when I've gotten up to go to the bathroom in the middle of the night...

Is it working/Do you feel better?

Another kinda complicated question...is it working, yes, the formula is going into my intestine like it should. Do I feel better, yes and no. Like I mentioned, I'm still having issues tolerating the formula. That is not uncommon in starting tube feeds. Our body is not used to having food delivered directly to the intestines, so there is an adjustment period. In addition, the formula I am on may contain some things I am sensitive to, so we are still in the troubleshooting phase for that. so I am still having some digestive issues and feeling unwell. HOWEVER, the severe pain and nausea that I was having on an almost daily basis is gone. Because I don't have to stress about eating and make sure I'm getting enough calories, my stomach is getting a much needed break. That is fantastic! I am so thankful to have this reprieve. So is it doing what we hoped, yes, but the potential for even greater improvement is there and hopefully we will get there soon.

And lastly...

Can you shower with it?

Okay, I haven't actually been asked this one, but I know there are always unspoken questions, so just to clear up any confusion, the answer is YES! I can swim with it, too, if I wanted. There are very few limitations that I have other than no contact sports and that's just because of the risk of it getting pulled out, not because there is anything about the tube itself.

And that's all I've got!

I hope that answers some questions you may have about the tube! Again, like I said at the beginning of this post, if you have anything else you wanted to ask, please do!

Sunday, February 22, 2015

Tough Decisions

So on the tail end of good news in the diagnosis and finally having a plan, unfortunately, this post is not as positive...at least it seems that way at first glance. But if you read all the way through, hopefully you'll catch a glimpse of why this is still a step in the right direction even if it feels like we are taking two steps back.

So I know I've mentioned that I'm still having a lot of symptoms and likely will until we figure out what treatment is going to be best for me. Right now, the most troublesome issues are GI related. I've been dealing with a lot of stomach pain, nausea, vomiting, etc. for months now. Right about the same time as our wedding in September, I was starting on a mostly liquid diet due to severe problems tolerating solid food. Over the past few months, things have continued to progress and the past few weeks I've been unable to tolerate anything beyond clear liquids and popsicles. Just in the 4 months we have been married, Nick and I have made 7 ER trips and had a 4 day hospital stay due to my GI issues...3 of those have been in 2015 and we're barely six weeks into the year...and that doesn't include the many nights spent in serious pain but not wanting to make another trip to the hospital...

We are hopeful that with the new diagnosis, once we find the medication combination that works best for me, these issues will calm down and become much less troublesome. My doctor in MN who diagnosed me is also confident that as we find my treatment for MCAS, I will see considerable improvement in my symptoms. HOWEVER, in the mean time, I still need some relief...

All this has led up to the tough decision that we have made for me to get a temporary feeding tube. I will have an nasojejunal tube (NJ tube) which bypasses the stomach and extends into my small intestine. It will allow my stomach and top portion of my intestine which are the most effected by the gastroparesis to rest, but will still provide a way for me to get the nutrition that I need. It does not require surgery since it will only be temporary and is placed during an endoscopy by my GI doctor.

So the downfalls...for me the big one is...the N part of NJ tube. For those of you up to date on your medical terminology, yes it is referring to the nose (naso). That means the tube will go through my nose and follow the normal food pathway, down the esophagus, through the stomach, into the small intestine. To answer the obvious question, yes, I will have a tube coming out of my nose...

Not exactly what I had hoped for to start off 2015...BUT, we are still hopeful =) We are choosing to go this route because we (my family and doctors) believe this is the best treatment option for me right now. It does feel like two steps back...we FINALLY got the diagnosis and instead of feeling and looking better, I need a feeding tube...in some ways it could be discouraging, but we are focusing on the positives, seriously, I mean that =P

It's positive because it will allow my GI tract to rest while I can still receive the nutrition that I need. As we work toward finding an MCAS treatment that is effective, I can avoid the stress related to having to eat and knowing it will cause severe pain and nausea. Ideally, once we do find the most effective treatment for me and get my mast cells calmed down, I will be able to transition back to a normal diet and not have my body rebel as we will have addressed the cause of my issues. In addition, hopefully this will keep us out of the ER for a while! In case you hadn't noticed after reading some of my blog posts, the ER is definitely NOT one of my favorite places...despite how frequently I seem to end up there...haha =)

And on that note, I'm going to end with some humor (at least I think it's funny =P). When I was in college and some of my symptoms started becoming worse, one of my good friends was convinced I had picked up some sort of parasite or worm when I had gone on a mission trip to Brazil. She was so convinced she even decided to name it Herman. As Nick and I have been preparing for me needing a feeding tube, Nick has been helping me come up with ways to make it less awkward for people to see me with a tube coming out of my nose. One of his ideas (specifically for the kids at church, although I suppose it could work for anyone) was to tell the kids I had a pet worm that I kept in my nose and was now letting it out. Yeah, I know, a bit gross, but at least it takes the focus off the feeding tube, right?? Not sure I want people thinking I have a worm in my nose though...

Anyway, in honor of Liz and to fuel Nick's enjoyment, I will be naming my tube Herman. So the next time you see me, don't forget to say hi to Herman, too. =P

So that's the latest update.

Please pray for quick healing from the procedure that was on Thursday. I am really struggling to recover and very uncomfortable.

Please pray for this to be effective and that I will benefit from this with no negative side effects or reactions. Right now I am struggling to tolerate the feeds in the tube.

Pray for me and Nick as we continue walking down this tough road, and that during the time I have the NJ tube, we will find an effective MCAS treatment.

PRAISE for doctors we feel we can trust and truly care about helping me. This was more than I could have hoped for, and we are so grateful.

PRAISE for all of your walking this road with us and lifting us up in prayer. We are so thankful!

Tuesday, February 17, 2015

Date Night

Nope, not what you're thinking =P At least if you're imagining a nice dinner at a restaurant and a movie...apparently Nick and I enjoy spending our time together at the ER when we aren't at home...maybe we should re-think our version of date night...I don't think that was covered in our marriage mentoring...

Anyway, yes, unfortunately we spent another night in the ER yesterday. Thankfully it was just in and out and I was not admitted so that was good. And when I say in and out, I mean sitting there about 4 hours just waiting for most of it. What happened this time you might ask?

Let's just say we found out that Epipens really do work...and they work FAST!

Monday nights are the women's Bible study at our church that I'm signed up for. Notice that I said signed up for, not go to each week...I wish I went each week, but some weeks I end up being too sick to go. We just covered week 6 last night and I think that was only my second time going. Anyway, I felt off all day yesterday, but not to the point where I felt like I was in danger or out of it. My symptoms started to get a bit worse in the evening, but I still felt okay. I deal with various symptoms on a daily basis, so just sucking it up and dealing with them is what I'm used to doing, even when they're a bit different from what's "normal" for me.

Nick offered to drop me off at Bible study (what an amazing husband I have =P) since he was going to go to a co-workers house to help him with some remodeling work. I started feeling a bit worse on the way to Bible study, but took some meds and hoped things would pass. Nick and I agreed that if things got worse I'd call him and he would pick me up early.

The first half hour or forty-five minutes were okay. Things were getting a bit worse, the meds didn't seem to be working, but I still felt okay enough to participate in our table discussion. Toward the end of table time, I started to really have trouble breathing and was getting bad stomach cramping and feeling dizzy and lightheaded. At that point, I started to get a bit scared because all the symptoms progressed pretty quickly all of a sudden and I wasn't sure what was going on. I texted Nick, but we found out later the message didn't actually send...

A friend of ours who sits at the next table is an ER nurse so she sat with me for a bit and helped keep me calm so I wouldn't make things worse just by being anxious. She called Nick and explained the situation. As we were waiting for Nick, things were okay, but I could feel my chest and throat getting tighter and I felt more nauseas and dizzy, even though I was sitting on the ground.

When Nick got there, he made the decision to call the ambulance to take me to the ER instead of driving me himself. It was at that point that he pulled out the Epipens just in case we decided to use them. Up until last night, I've been scared to use the Epipen...almost more than I've been scared of the allergic reaction. I really didn't want him to have to use it on me if we could avoid it. While we were waiting for the ambulance, though, my throat started feeling even tighter and I started having trouble swallowing. That was our cut off. Trouble swallowing or serious breathing issues other than just coughing or wheezing means Epi, no questions asked. Plus, at that point, I was getting really scared and anxious because I couldn't really swallow which was making things worse.

Let me just say, I have gotten over my fear of the Epipen. It made a HUGE difference. Within 2-3 minutes after being stabbed in the leg with a giant needle (which I felt, but it didn't really hurt), I could breathe almost normally and swallow much better. My nausea calmed down and I could sit up without feeling like the world was spinning. The paramedics arrived about 5 minutes later, and at that point, I was doing much better. The got me loaded up, started an IV, and got me some more medication and took me to the ER. In the ambulance I started having some throat tightening again and nausea and itching, but it never progressed past that. In the ER they followed the emergency protocol that Dr. Afrin had given me to stabilize my mast cells after an anaphylactic reaction, and I started feeling better, just sleepy due to all the meds in my system. Because anaphylaxis can sometimes return a few hours after the initial reaction, they kept me in the ER for about 3 hours just to monitor me and make sure everything was okay before sending me home.

So that was our exciting "date night!" In case you were wondering, I don't recommend it...

Something I do want to mention for any other MCAS or rare disease patients that may read this. I have created a set of "flip card" or index cards with all my relevant medical information on it that paramedics or nurses and doctors can use to get up to date on my issues when I'm not able to speak for myself. I have multiple cards all with different information on them. Here's what I've put on each on so if anyone is interested in making their own, this could be a template for you to use:

1) The first card has a short paragraph explaining that I have an unusual medical condition and often present with atypical symptoms. It also says that everything on the other cards was written based on my doctor's recommendations and that I appreciate them following his recommendations.
2) The second card has my personal information (name, birthday, address, emergency contacts) and my medical conditions (MCAS, GP, POTS, RS)
3) Next is my medication list. On this I specify what each medication I'm taking is for, the dose, and how often I take it each day. I also list any supplements that I am taking.
4) Physician information. I have 5 doctors listed, my primary care doctor, GI, MCAS, neurologist, and asthma. I have where they practice and their phone number.
5) Allergies - this is a big one. If you have any allergies that won't fit on a bracelet, absolutely carry this with you. I have my food allergies listed and medication allergies. I also put on this card other medications to avoid due to having MCAS. At the bottom I put a short sentence saying that I am EXTREMELY sensitive to medications and that they need to start with low doses and increase as needed.
6) The next card has my "ER Protocol" on it. Because MCAS is a systemic issue, one of Dr. Afrin's recommendations was to receive certain medications ANY time I end up in the ER regardless of the reason to keep a MCAS reaction from exacerbating whatever issue I was dealing with. So I have at the top my standard treatment for any ER visit. Then for me I also have instructions for anaphylaxis or a GI issue.
7) The last card has other medical information on it that may be relevant but doesn't fit anywhere else. I have my height, weight, normal resting HR, normal resting BP, and normal temperature since I typically run low on everything, so a "normal" value would be high for me. I also have a pre-medication procedure on there for any medical procedures or radiological scans with dye.This is another MCAS protocol to stabilize my mast cells and prevent reactions.

So those are my medical info cards. I keep them in my backpack in a red neoprene bag that has a medical symbol on it and says mast cell disease on the front. I also carry a USB drive that has relevant imaging and doctor's notes on it in case that is useful. Since I've made these cards, every paramedic and doctor I've seen has said they are a really good idea for anyone with an unusual medical condition. The EMT in the ambulance couldn't even pronounce gastroparesis so I know he had no idea what that was, and the doctor in the ER had never heard of MCAS. But because I had these cards, I was able to get the treatment I needed and avoided an admission to the hospital. Today I'm feeling pretty good, other than my leg being sore where I got stabbed =P

Saturday, February 14, 2015

GP Awareness Day!!!

For all of you that thought today was Valentine's Day, you'd be mistaken. I know that's what Hallmark wants you to think,but in reality it's Gastroparesis Awareness Day!

So instead of wearing red and pink and eating heart shaped food, wear green and don't eat anything! Okay, just kidding about the not eating part =) But seriously, GP needs awareness. I hadn't heard of it until I started dealing with these medical issues, and I've met multiple doctors and who knows how many people who don't know what it is. It's hard to effectively treat something who no one knows what it is.

So here are some facts about GP to spread some awareness and share information about dealing with this condition.

Gastroparesis is caused by damage to or the miscommunication of the vagus nerve. The vagus nerve is the main nerve in the body responsible for the parasympathetic nervous system (PNS) response. The PNS is responsible for the "rest and digest" functions in the body, including digestion in the stomach and intestines. When this nerve and the smaller nerves that branch off from it are damaged or not working properly these processes don't work well or at all.

Normal digestion begins in the stomach and once the food has begun to break down, it is moved into the intestines to continue digestion. With GP, the vagus nerve may not stimulate the stomach to begin digestion, might not trigger peristalsis (contraction and relaxation of the gut muscles to move food along), and might not stimulate the pancreas and/or gall bladder to secrete the digestive enzymes and bile needed to help digestion. Every case of GP can presently slightly differently.

It can cause pain, nausea, vomiting, diarrhea, constipation, bloating, distension, and more. Again, every person is different and the symptoms can vary. One day can have more pain than nausea another day can be non-stop vomiting...there is no way to predict what each day will bring. I deal with all of these symptoms at one time or another. The biggest ones for me are pain and nausea. I take multiple medications every day right now to help keep them at manageable levels so I can function. On days when things are really bad, I have emergency medications to take that make me really sleepy or shakey. I can't drive or focus well when I take those so they are a last resort. Some days, my symptoms get so bad I cannot keep down any of my medications at home...that's when we end up in the ER so I can get IV medications. It's day-to-day how I am able to manage my symptoms.

There are two main diagnostic tests for GP. One is the Gastric Emptying Study. In this test, a small amount of radioactive material is injected into either eggs or oatmeal and the patient has to eat a certain amount of the food. The test is approximately 4 hours and every half hour the patient stands in front of a machine similar to a Geiger counter to measure how much of the radioactive material is still in the stomach. The other test is a SmartPill study which is what I had. This test can measure motility all the way through the digestive tract, not just the stomach. For this I had to swallow a pill that measures pH, temperature, and where it is in the GI system. The patient wears a wireless (obviously =P) recorder that collects the data as the pill moves through.

Unfortunately, just receiving a diagnosis of GP is not necessarily the end of digestive issues. There is no cure for GP. However, sometimes GP can be a symptom of an underlying condition. It is common in diabetes and dysautonomia, both of which effect the vagus nerve. When it is caused by an underlying condition, treating that condition typically results in improvement in GP symptoms. We are hoping this is the case for me.

MCAS is a systemic disorder meaning it can have effects throughout the body. Mast cells are located along the nerves so they can have effects on the nervous system and how the vagus nerve and enteric nervous system in the gut function. In addition, mast cells are located throughout the GI tract and can cause inflammation. The combination of these two effects can result in motility issues. By stabilizing the mast cells, both the inflammation and nerve responses can be calmed down which *hopefully* will resolve GP issues.

So that's a quick overview of GP and how it effects me and is related to MCAS. I hope that this is informative and hopefully can help someone else as they are dealing with GP and related issues.

Happy Valentine's Day! Happy Gastroparesis Awareness Day!



Thursday, February 5, 2015

The Dark Side

Has anyone heard the song by Sidewalk Prophets called "The Words I Would Say"? If not, go listen to it, I like it. But there's a line in it that says "It's 3 in the morning, and I'm still awake..." Not to get deep or anything, but sometimes they just speak the truth!

Okay, it's not quite 3 in the morning...it's only about 1:30, but for some reason I couldn't get those lyrics out of my head. Although, the rest of the song goes on to be encouraging and uplifting...and this post will be anything but...the reality is that living with a chronic illness has a dark side (no pun intended due to the current state of the sun outside =P). There's a side that no one sees because facebook and texts and even this blog (while I try to be honest), hide what goes on when no one is watching.

The restless nights spent wide awake from nausea and pain and restlessness due to symptoms not letting me sleep.

The LONG days at work/school that are really only 4 hours long because I'm not sleeping, can't eat, and am exhausted.

The hours spent learning every last crack in the bathroom tile because I haven't left all day due to nausea or vomiting.

The questions that arise every time a new symptom appears and not knowing what is going on or how to treat it and flying blindly and hoping for the best.

The reality that I carry more medications than a pharmacy with me just so I have what I need to treat whatever symptoms may pop up during the short time I'm away from home.

The fear that comes with having to educate doctors and nurses when the real reason I'm in the ER is because we think I'm in anaphylaxis.

The inability to do my work for school because I'm in a drowsy brain fog from a medication change.

The awkward moments that come up when you pass out or have a reaction in public and then you have to see those people again and feeling like you have "YES, THAT WAS ME" projected in neon letters over your head.

The many "date" nights spent in the ER or hospital to get some relief from unrelenting symptoms or treatment for new ones.

The endless doctor's appointments that become a permanent fixture in my calendar like a second job.

The isolation that comes from spending so much time alone at home feeling "grounded" and unable to drive anywhere because of my symptoms.

The many canceled dates with friends and missed events that happened because of a severe flare of symptoms and the far too routine text message to apologize yet again.

The constant fear of passing out or having a reaction that comes on too quickly for me to avoid when I'm out and about and not in the comfort of home.

The guilt that comes in knowing this is the reality that my family has to face every day and wishing I could take that weight away from them.

The inadequacy that comes from feeling like I am not measuring up to what I should be able to do at school as a PhD student working on my dissertation because of my illness.

The emotional and spiritual exhaustion and struggle that sometimes feel more overwhelming than the physical pain.

This. Is. My. Life. 

I'm not writing this blog to get sympathy. PLEASE do not feel sorry for me. But please do keep praying. I want this blog to be a place where I can keep family and friends updated on what is going on because I am grateful for all your prayers! At the same time, I also hope that this can be an encouragement and resource for other people walking this same road that I am. And the reality is that this is a tough road. Some days it's just too much. I know everyone has their own struggles, and I'll be the first to say that the things I struggle with are no more than anyone else. We all have our own trials, mine just happen to be medical issues right now. But I want to be honest. 

It's in my nature to be positive. I try to find *something* positive even if the only thing I can come up with is that I got to wear my favorite shirt today. (Hey, having laundry done is something to be thankful for!) Even for this post, I keep trying to find a positive angle that I can end with...but I'm not going to.

Because the reality with a chronic illness is that sometimes bad days lead to bad weeks which could lead to bad months. 

Sometimes there is no end in sight. 

Sometimes when people tell you that things will get better, they don't. 

Sometimes you just feel like you're getting hit while you are down.

It's just the dark side of being chronically ill becoming more real. So I'm going to end with this.

Sometimes life is just hard.

Sunday, February 1, 2015

Super Bowl Sunday and Snow!

Happy February 1st!!

January seemed to fly by, and I can hardly believe that we are already into the second month of 2015. Crazy!?!? It feels like so much has happened in the past 2 weeks that it should be at least March...but I'm sure that will come fast enough on it's own.

Happy Super Bowl Sunday!!

I'm excited to watch the game today because it's supposed to be one of the closest match ups in years. I like watching football, but especially when the score is close and it's exciting! I don't really care who wins, but I guess I'm slightly pulling for NE only because I'm not a Richard Sherman fan...sorry Seattle!

Come on snow!

In other news, we're expecting a big snow storm tonight! Not great timing with the super bowl on tonight and lots of people driving and on the roads, but I'm still hoping we get some good snow. I've been joking with Nick that I'm secretly (or not so secretly since I'm blogging about it now...) hoping we get so much snow that even his work closes and we can have an impromptu snow day at home! We will see if that happens...it is Ohio after all...

And lastly, a quick update for those of you that have kept reading!

Nothing much to report right now. I had an appointment in Pittsburgh with my GI doctor and dietician. While we are relieved to have a diagnosis, there could still be a bit before we see resolution of my major symptoms and in the mean time, we still need to keep me "healthy" or at least as close to that as possible. So we were talking with them about new treatment options for my GI issues and what we can do to minimize ER visits and the pain and nausea. We are hoping that as we get my mast cells under control, all my other issues will begin resolving as it is likely that the stomach issues are not really GI related but connected to the mast cells. So we are starting some increased doses of medications to see if that helps and touching base with my doctors in another week.

Tomorrow will mark 1 week since I was in the ER last, so please be praying I can break my previous record! (We are ignoring the minor detail that I was admitted overnight so technically it's Tuesday, but since Monday was when we went in, I'm going with that.) I have an appointment with my primary on Wednesday to talk more about treatment options and how to manage until we get things sorted out.

Hope everyone has a good first day of February and enjoys whatever weather is coming your way! Go Patriots!