Wednesday, April 29, 2015

T-4 Days!!

It's coming...it's almost here...only 4 days until the Providence Marathon!!

As I've mentioned before, I'm the patient partner to Fran Crofts as a part of the Running for Rare Diseases 2015 Team. A group of R4RD runners and patient partners attended the Boston Marathon just about 2 weeks ago. They had a fantastic showing in Boston, and are looking forward to the Providence Marathon where another group of R4RD runners will race in the marathon or half marathon.

Fran will be running the full marathon on Sunday, and has spent the past few months training for this weekend. This was a particularly difficult winter for running, so help me encourage her and wish her good luck for the race!

Not only has Fran spent the past few months braving the rough northeast winter and tallying up the miles, but she has also committed to raising funding for the Undiagnosed Diseases Program at NIH. The entire R4RD team is not only running races, but also raising awareness and funding for patients struggling with rare conditions that doctors have not yet been able to diagnose.

It was not that long ago that I was in that place, knowing there was something wrong, but yet not having a diagnosis. While I'm the poster child to say that having a diagnosis does not necessarily mean a cure or immediate improvement, it still can be a HUGE step in a positive direction for patients dealing with rare diseases.

Before being diagnosed, I dealt with doctors telling me there was nothing wrong, prescribing medications to treat conditions I didn't have, and the uncertainty of knowing my body was failing me and being unable to do anything about it. Pain, nausea, dizziness, passing out, shakiness, vomiting, hives, rashes, headaches, brain fog, shortness of breath, and more were all a part of my daily life and there was nothing I could do but play Russian Roulette every morning to try to manage my symptoms and function "normally."

Obviously I'm not "healthy" yet, but we are definitely moving in the right direction. My symptoms are usually able to be managed much better now that we know what is causing my issues. Just having the diagnosis of MCAS means we know what we are treating and while every treatment may not be perfect, we are moving in a positive direction. I can confidently say that today I am significantly improved compared to where I was in January when we were still grasping at straws.

Being a part of the R4RD team has given me the opportunity to raise awareness for a cause that is incredibly personal for me and my family. Please help me, Fran, and the entire R4RD team spread the word about how desperate a need there is for funding for the Undiagnosed Diseases Program for those patients that are still searching for answers by sharing this post with your friends and family!

Also, please considering donating to Fran's fundraising page (http://www.firstgiving.com/fundraiser/FrancesCrofts/2015-running-for-rare-diseases-team) and helping her raise funds for the UDP and other patients like me!

Monday, April 27, 2015

Birthday Date Night

If you're on facebook, you probably saw that it was Nick's 27th birthday last week!!! I really wanted to make it special for him since it was our first birthday celebration since being married. I was super sneaky and actually prepped dinner and baked a cherry pie the day before and cleverly hid them in our kitchen. Then I spent Monday evening doing everything I could to keep him distracted so he wouldn't accidentally stumble onto them...mission=success!

Dinner went well too! I was afraid I was going to have more than my fair share of "Pinterest fails" between making the pie and trying to have everything together for sushi, but it all turned out good! At least for Nick...

About halfway through dinner, my stomach decided the mashed potatoes I was eating were NOT an acceptable foreign object and I ended up in severe pain and extremely nauseas. My PEG-J tube is great for running feeds and really is more comfortable than the NJ tube was. HOWEVER, now when I'm in a lot of pain and nauseas and having bloating problems, it pushes painfully against the bumper of the tube that is holding it in place on my stomach, which added a new level of pain...I tried to ignore it for a while, and we finished dinner and Nick opened his presents. Then we decided that it was only appropriate to go out for a date on his birthday, so we headed to our favorite local establishment...the Twinsburg ER.

It's bad when the doctor not only recognizes me but also knows that I'm working on my PhD at Kent. We are practically on a first name basis with the doctors, and at this point I almost always get a nurse that I've had before because they "claim" me. But seriously, even the nurses joke that we should get a frequent flyer punch card.

We were in and out fairly quickly. They were full when we arrived, but I was able to get a bed in the hallway and at least got fluids going while we waited on some other patients to be discharged. Since we do tend to frequent the ER, they know my protocol and we just confirm whether there is anything else we are concerned about. Small blessings =)

Anyway, despite having an impromptu date night on Nick's birthday, he said it was still a good day, and we were able to finish celebrating his birthday on Wednesday by watching Big Hero 6! Overall, I'm still way better than I was before getting the feeding tubes. In the first 6 weeks of the year, I was in the ER 6-7 times. Since mid-February when Herman I was placed, I've been in the ER only twice! I still have good days and bad days, and things aren't "good" yet, but definitely improved.

I have a follow-up with my GI doctor in Pittsburgh on Thursday and go back to my primary next Monday. We are hoping to get some medication changes to better control my symptoms at home and trialing another MCAS medication. In the mean time, hopefully no ER visits!


Monday, April 20, 2015

BOSTON!!

If you're a runner, then you might, just might have some knowledge of a little race held in Massachusetts every year called the Boston Marathon. =) Even if you're not a runner, after the bombings in 2013, I'm guessing you have at least heard the name.

Boston is pretty much the top of the top marathon in this country (and attracts elites from other countries, hello Kenya and Ethiopia) just below the Olympic Trials. You cannot just register, you have to qualify, and then hope you make it past the lottery. It is probably one of the toughest races to get into in this country. Even for the Olympic Trials, if you qualify, you're in..not so much for Boston. It has become the pinnacle of racing for marathoners.

However, there is a group of runners that can race the Boston Marathon without meeting the qualifying standards. These are the charity runners. Or what I prefer to call them, the awareness raisers. 

I've run my fair share of races. I love running and keep threatening to go for a run despite having had surgery less than a week ago (don't worry, I'm only joking =P mostly...). When I first started running, I didn't understand why someone would sign up to run a race, AND commit to having to raise some amount of money. Why not just pay the registration fee? But as I look back on my own race experiences, now I can see why. Where else do you have the opportunity to share with literally THOUSANDS of people a cause that is incredibly important to you? Racers wear gear that show off the name of the organization that they are representing and race 26.2 miles through a city where spectators, racers, officials, and innocent bystanders are doing nothing but watching. The organization gets more "views" during a race than it may get in a few months of the year combined! And when it comes to raising awareness, getting the name out there is the first step.

As I've mentioned in a couple previous posts, I am part of the Running for Rare Diseases 2015 Team as the patient partner to Fran Crofts. There are over 100 patient partners and runners on the team this year. Many are running Boston today, and another group (including Fran) is running the Providence Marathon on May 3. Still others are running races in other parts of the country and even in Europe! Some of the runners are fast and may have qualified for Boston in their own right, but others do not quite meet the qualifying standards. Yet they are still running the race on behalf of this team, committed to raising awareness for rare diseases.

The awareness opportunity is incredible! This is the biggest marathon in the country in terms of media presences, especially after the events of 2013. There are approximately 30,000 runners registered for 2015. In 2014, there were an estimated 1 million spectators along the race course. That does not include race officials, media personnel, security, and people that just happen to live in Boston and stumble across the race on race day. Where else does Running for Rare Diseases have the opportunity to get their name out there and make people aware of the need for research for the 6800+ rare diseases in this country?

So I'm excited! Not just for the runners who have spent months and years working to meet the tough qualifying standards, although I am happy for them as well. But for the opportunity to spread awareness about rare diseases that many people have no idea exist. The first step in gaining research funding for the Undiagnosed Diseases Program is making people aware of the desperate need that many families have for answers. So I'm excited to see runners and spectators representing the Running for Rare Diseases Team this year!

The Boston Marathon is being live streamed on BAA.org today from 7am-3pm, so check it out and watch for the Running for Rare Diseases Runners!

Please consider helping us raise awareness and funding by supporting my runner, Fran, in the Providence Marathon in less than a month as she represents not only my story of being diagnosed with a rare disease but all those searching for answers! 

http://www.firstgiving.com/fundraiser/FrancesCrofts/2015-running-for-rare-diseases-team



Saturday, April 18, 2015

Post-surgery Update #2

No news is good news, I promise!

Sorry for not updating sooner. I know many of you have been praying for me this week. I am pleased to share that I really am doing well!

I had the surgery on Monday morning and was discharged late Tuesday afternoon (was SUPPOSED to be Tuesday morning, thank you insurance...). My mom had been with me in the hospital so Nick did not have to take off from work, and she stayed with me until Thursday. She is now back in VA representing Trippin with Jamie at the Accessibility Summit at Mclean Bible Church today, so go visit her!

Anyway, compared to getting the NJ tube, this was so much better! Everyone told me I would be happier with the PEG-J, but I was skeptical. Somehow having a tube surgically placed in my stomach didn't sound like an improvement. I was wrong. Despite having just had surgery, I really do feel way better than I did after getting the NJ tube. Herman II is already one up on Herman I =)

Being stabbed in the stomach >>> having a worm come out my nose =P

That being said, I am still sore. If you see me walking hunched over at any point in the next few days, it's because I was basically stabbed in my stomach (even my doctor said so!). My stomach is also still very swollen which pushes against the external bumper on the tube and is very uncomfortable. But I'm improving every day. I was able to go in to school for a few hours on Friday and ran 12 miles this morning, so I'm almost back to normal.

Just kidding on the 12 miles =P I have gone for a few walks and was able to get on my bike trainer in my apartment for a short ride, but no running yet. Hopefully I'll be running soon, though!

But seriously, I am doing well, and excited to see how I will be doing once I am fully recovered from surgery. It is very nice not to have a tube coming out of my nose and not to stick out so obviously when I'm walking around. I do still have my backpack with my feeds but I can tuck my tube under my clothes and if you're not looking for it, you can't really tell.

I hope I don't sound like a broken record, here, but please know that every time I say this, I am thinking about you all and so grateful.

THANK YOU FOR YOUR PRAYERS!!

Knowing there are so many people praying for me and my family is humbling. I don't think many people go through life hoping for a time where they are continually asking family and friends to pray because life is just that tough. I certainly didn't. But I am here now, and I've come to realize that those prayers are not just idle words muttered during a 30 second stop light. They are heart-felt communication from children of God to their father on my behalf. Wow! Like I said humbling...

THANK YOU

I wish I could better express how much your prayers mean to my and my family. This season of life has been so hard, but we are not walking it alone. Thank you for living out Galatians 6:2. "Bear one another's burdens, and so fulfill the law of Christ."



Monday, April 13, 2015

Quick Update

I am out of surgery and have been in my room for a few hours. I am awake and able to communicate (obviously =P) and feeling okay. I do have a bit of pain and discomfort where my new tube is (Herman II, or Namreh as my growth group girls decided to name it) but that is to be expected.

The procedure was much better this time than last time, so THANK YOU for all the prayers! I was very nervous going in, but my doctors and nurses were great. We used a different medication than last time, and while I did have some moments of hypoxia (low O2) and hypotension (low BP) that made my doctor nervous, everything went alright. 

I am still trying to wake up since the medications they gave were much more potent than before, so I apologize if this seems scattered or disjointed.

Please continue praying! I will be in the hospital until tomorrow at least. I am hoping to be able to go home on time! Also pray for easy pain management and quick recovery!

Friday, April 10, 2015

Saying Good-bye to Herman...Kind of...

It has been just over 6 weeks since I had my NJ tube (aka Herman) placed. When my doctor put it in, he said that I could keep it for AT MOST 6 weeks since studies have shown the risk for permanent sinus damage significantly increases when nasal tubes are kept longer than about 6-8 weeks. So we are at the end of my time with Herman...it's been a good run!

Am I excited not to have a tube in my nose anymore? YES! I am so looking forward to being able to sleep on my left side again and to not stick out so obviously when I'm walking around anywhere.

On the flip side, am I ready to be eating normally again? Unfortunately, no...

The plan had been for me to have the NJ tube for 4-6 weeks and hopefully during that time we would find a medication to stabilize my mast cells so I could begin transitioning back to solid food while still on the tube. Then, once it was pulled, I would be back to eating more or less "normally." Unfortunately that has not happened...we are still trying different medications, and in the mean time, my mast cells are still running the show.

Mast cells are involved in digestion. When we eat, mast cells release mediators to aid in the digestive process. Because I have such a high concentration of mast cells in my stomach and intestines, whenever I eat anything that actually needs to be broken down for digestion, the amount of the chemical mediators that are released by the mast cells overwhelm my body. Mast cells are also involved with allergic reactions, so when these chemical mediators accumulate I start having allergic reactions just to eating...not necessarily to the food. I've gone into anaphyhlaxis twice in the past month due to eating and the progression of my mast cell reactions...obviously NOT GOOD!

So since I can't eat normally, and eating is kind of necessary for survival (at least that's what I've been told, apparently my body is trying to defy the odds...), I will continue to need supplemental nutrition for the foreseeable future. We have made the decision for me to get a more permanent feeding tube called a PEG-J tube. This will go into my stomach and extend into my small intestines so I can continue running my formula into my intestines like I have been with the NJ tube. So while I will lose Herman coming out my nose, I'll still have him in my stomach...Herman II!

Please keep us in your prayers for the next few weeks. I am nervous. It is a big unknown. Even though it is called a "permanent" tube, it can be taken out. However, mentally, this has been a difficult step for me because it does feel much more permanent than the NJ tube.

I do not do well under sedation or anesthesia and am not looking forward to dealing with that again. When I had the endoscopy 6 weeks ago for Herman, I had a very difficult time recovering from the medications they used that time which are supposed to be the easiest on the body. I am nervous as to what medications will be used this time and how I will react.

I am nervous about how recovery will go after surgery. It is minimally invasive so hopefully recovery will be quick and easy, but I tend to take longer than normal for anything.

My mom will be coming out to be with me so Nick does not need to take time off work. Both of them will probably have their hands full taking care of me initially, so please pray for strength and energy for them as they are also dealing with work and other responsibilities.

Good-bye Herman I!!




Wednesday, April 1, 2015

What I (DIDN'T) Eat Wednesday

A friend of mine is a food blogger and post 3-5 times a week with recipes and other food related topics. One of the "theme" posts that she does each week is What I Ate Wednesday where she (and other bloggers in the food community) post what they ate that day with recipe links to the meals so their followers can attempt to try the recipes at home.

Lately I've been getting a lot of questions about whether or not I feel hungry and how I manage without eating, so I thought I would answer some of those questions in a What I DIDN'T Eat Wednesday post =)

I don't really get hungry. Because I have gastroparesis, my stomach does not process food normally. I can eat something on Monday morning, and it might not clear my stomach until late Monday night or even until Tuesday. Normal stomach transit time is <4 hours. There have been times where I will throw up food from 1-2 days earlier, and I can clearly tell what food it is because it is hardly digested. (Sorry if that's too much detail! =P) Anyway, because my stomach does not process food normally, I don't typically get hungry.

However, there ARE times when I will all of a sudden get really hungry. That typically happens after I've gone 3-4 days without eating (still on tube feeds, don't worry, I'm still getting my nutrition, just not by mouth). When that happens, I do try to eat something small because I am still supposed to eat so my stomach doesn't shut down completely. Unfortunately, right now, eating even small amounts is causing MCAS reactions and bad pain and nausea, so food and I are not really on speaking terms.

That being said, sometimes I do still get random food cravings...Nick likes to tease me that it's like a pregnancy craving...haha, yeah, NO, we will NOT be having any babies any time soon! So as a fun post, I thought I would share what I would have eaten based on my food cravings from the past few weeks.

What I DIDN'T Eat Wednesday:

Breakfast
Bowl of Cap'n Crunch or Frosted Flakes with almond or cashew milk (Side note: if you haven't tried cashew milk yet, DO IT!! It's really good!)

Snack
FRUIT! I miss this so much! Since fruit is high in fiber, it's been a while since I've had any fruit other than smashed bananas. I'd have green grapes, pineapple, oranges, grapefruit, etc. YUM!

Lunch
Turkey sandwich on homemade GF bread with carrots and hummus
Probably more fruit =)

Snack
FRUIT! Can you see a pattern here? I love fruit and miss it!
Tortilla chips or kettle corn (my kryptonite...just ask...anyone =P)

Dinner
Macaroni and cheese (no idea why I've been craving this since I don't know how long it's been since I've had this, but I guess that's why it's called a craving...haha, GF and DF of course =P)
Mixed veggies - corn, peas, green beans, carrots, broccoli, etc. Fresh vegetables!!!

Dessert
ICE CREAM!! Not usually much of a sweets person, I typically want the salty/savory foods, but last night I seriously wanted some ice cream...mint chocolate chip or plain vanilla would be good =)

So that's What I DIDN'T Eat Wednesday! I hope you enjoyed following along with my non-food blog post =) Hopefully once we find a medication that stabilizes my mast cells, I'll be able to look back on this post and have a day where I can change this to a What I DID Eat Wednesday! We are praying that day comes soon.

Until then, please enjoy your solid food for me =) And I'll stick with my popsicles and smoothies. At least the weather is warming up so I can enjoy cold drinks and not freeze constantly!