Thursday, January 16, 2014

Nurses and Doctors and IVs, Oh My!

Sometimes I know what I'm talking about...not always...but sometimes. I'll admit I'm not a medical doctor and I don't know everything there is to know about POTS/NCS or gastroparesis or MCAS, but I do know myself...too bad actual doctor's don't really seem to care about that part of medical treatment. (and if we really want to get specific, I probably DO know more than most doctors...)

Anyway, I was FINALLY able to get some IV fluids yesterday!!!!! It's been a very rough past few months, and the last couple of weeks especially I was fighting a losing battle with my gastroparesis. It's a vicious cycle - something will cause some of my symptoms to flare up which then results in a ripple effect and causes other symptoms. Sometimes it's not too bad and I'm able to keep myself from starting that downward spiral of doom by slowing down and taking a few days really easy. Every now and again, though (it seems like 1-2 times a year) I have massive flare-ups where I can't seem to get control of my symptoms.

That is what I hopefully am leaving behind as of yesterday morning/afternoon! I had gotten some lab work done on Tuesday, and my doctor called me Wednesday morning concerned about my hydration status and some of the results of the urine tests. I had already gotten to the point where I was deciding that I was going to need to get some IV fluids even if it meant going to the ER...then when I got her call, it kind of sealed the deal. I still have a 24-hr urine test to complete (yay for carrying around a jug of pee!) but my doctor thought it was more important to get me out of crisis mode rather than wait for anther 24 hours.

I figured I would try just going to the health center on campus to get an IV before heading to the ER. It's WAY cheaper than a hospital, (read free because they completely bill insurance!!) and I had gotten some fluids there in the fall after I passed out at school, so I was at least on file. It turned out to be frustratingly more difficult than it needed to be...long story SUPER short:
-front desk said no
-I said let me talk to the doctor
-nurses said we don't usually do that so let's wait and see
-doctor comes in and looks at my chart and says it's already on file that I can receive fluids on an as needed basis if I come in...

Why could they ALL have looked at my chart and seen that???? It could have saved all of us about an hour of our time going in circles. Isn't that the point of having charts? So multiple people in a practice can communicate? Apparently not...must just be to give the staff another task to do...

The doctor that I finally saw was actually pretty good as doctors go. He listened to me, asked questions about GP and POTS/NCS, didn't act like he knew what was best for me but offered suggestions and asked what I thought would work and that I needed. He even asked if I wanted chilled fluids or room temperature and how quickly I wanted them!

So I finally got my IV! It only took about 2 hours of going in circles, but I got a liter of saline over the course of about an hour. I was exhausted the rest of the day, (no idea why getting an IV is so draining, but it is) but felt pretty good. Last night was the first time in I don't even know how long I was able to eat a "normal" sized meal without major issues. Still had some minor complaints, but such a HUGE improvement. Praise God!!

On top of getting the fluids which jumps starts my system, I'm also starting a new medication today - Gastrocrom. It's a mast cell stabilizer specific to the GI tract. I'm excited to see how it works and hope that it can help to calm things down even more!!

Monday, January 6, 2014

2013 Recap

I've been postponing write this post because I really wasn't sure what to write. It's definitely time to update the blog, but at the same time I wasn't really sure what I wanted to say. A lot of people on facebook and other blogs that I follow have been posting a 2013 recap of sorts, so that got me thinking.

Here is a recap of my year in highs and lows...but that seems kinda boring, so since I LOVE bright colors (especially orange and green) and am NOT a fan of pink and pastel colors, my highs are in bright colors and my lows are boring, bland, tasteless, etc. You get the picture...ENJOY!

snowboarding at Wisp with the family, my brother's friend came for a few days and one of my friends came for a few days
beginning the year with stomach issues and really being in a lot of pain most of the time... starting to pass out more and getting more dysautonomia symptoms flaring up

NOT freezing my butt off commuting to school on my bike (it was another "mild" winter so I was very thankful for that!)...having my parents visit (although that transitions to the low...)
parents came out to visit because I was getting so sick...having multiple doctor appointments where I was more or less told "you're not sick enough, go home until you're bed bound, THEN come see me." (Isn't the point of being a doctor to keep patients healthy, not just treat them when they're sick??)

finally finding a GI doctor who was familiar with dysautonomia and getting some testing done that gave us some answers (!!!)...being home (kinda) for spring break and seeing family
spending my spring break driving 3 hrs round trip to said doctor...having to significantly reduce my fruit intake after being diagnosed with fructose malabsorption =(

placing first overall for females in a 5k and winning a $60 gift card for running shoes and $100 to Maggiano's (my mom's favorite restaurant...guess who was the favorite daughter on Mother's Day this year)
PAYING TAXES, let's be real...who likes Tax Day??

so many I can't decide...first triathlon in 3 years with Mom and friends...diagnosis of Gastroparesis (bummer but got me on track for a few really good months!)...first open water lake swim...going to my first ACSM conference with my department and presenting my research
final exams (okay, they really weren't all that bad)...more doctor visits...does it ever end??

sprint triathlon in a local park where I PR'd my 5k AFTER swimming and biking, PLUS I was able to get my wetsuit off without looking like a beached whale or taking 10+ minutes...Dad came to visit!
rashes/hives/itching getting worse...making more doctor's appointments...

first ever Dysautonomia International conference (had the opportunity to talk with multiple doctors and get pointed in a few possible directions that ended up being incredible useful)...launching an exercise program for Faculty and Staff at the university and helping coordinate the details for that...Mom came to visit!!
having to wake up at 5am MWF for the exercise program (I know I used to do that when I lived at home, but somehow I felt it more this time...)

triathlon with my Mom, didn't place but had a BLAST...white water rafting with the family and my brother's friend, my boyfriend was also able to come for a day (it was EPIC!!)...seeing a doctor who continued to point us in the direction of Mast Cell Activation Syndrome (but unfortunately wasn't all that nice to see/talk to...oh well guess you can't have everything)
classes starting back up (I've finally hit my limit...who knew that could ever happen, I'm ready to graduate!) deciding that the doctor was not covered under our policy (would have been nice to know that first...I even called to make sure it was covered!)

seeing Mom at the end of the month for the Akron Half...leading a high school small group at birthday!
said half marathon (note to self - while IV fluids help me feel so much better, 3L in an hour is TOO MUCH...)...still trying to figure out stomach/rashes and hives/etc...yet another doctor just doesn't "get" me...

mission trip to Oaxaca, Mexico for a week (INCREDIBLE experience, would go back in a heartbeat, God moved in so many ways!!)...going home with my boyfriend to pick up Bonk and visit with family and friends
not having Bonk for 2 weeks when he was at my parents...having a major reaction to a lady's perfume on the plane flight back from Mexico (typically not a good sign when the pilot starts talking about turning the flight around or diverting to Mexico City)

going to a really amazing state park with my boyfriend and visiting his sister...going home for Thanksgiving (my favorite holiday) and seeing family and to at least eat a bit for Thanksgiving dinner
stomach issues/gastroparesis starts getting bad again about a week before Thanksgiving...multiple doctor appointments while home trying to sort out all my stomach/skin/endocrine issues

snowboarding at Mount Snow with the family...seeing my grandma and cousins for the first time in a while...end of the boyfriend came to visit after Christmas...celebrating New Year's with his family
still battling stomach problems...LOTS of driving/sitting in the car...spending 10+ hours traveling to VT (when it should have only been about 7 hrs) with less space than a plane seat and Bonk on my lap

I actually enjoyed making this list more than I thought I would. It was a good way to look back at 2013 and kind of reflect on everything that went down. Despite the struggles and hard times, I actually had more trouble remembering the lows than the highs. I enjoyed remembering all the good moments and exciting times and that encourages me to look forward to 2014.

I did have some really down times in 2013, I'm not trying to hide that or pretend it was all rainbows and ponies and sunshine. But one thing I was reminded of as I was making this list is that I can choose what I focus on. For 2013 I chose to do the OneWord challenge with Fellowship of Christian Athletes. This was where instead of making lots of resolutions in January, I chose a word (ONE word =P) to be my theme for the year. Mine was FOCUS. There were many, many (many, many, etc.) times throughout 2013 where I lost focus. I started to get caught up with everything that was going on and getting discouraged. But as I look back on the year as a whole, not as individual events, I CAN say I had a great year...not just a good year, but a GREAT year.

It wasn't all good, but I'm not going to focus on that. I am choosing to remember the good and learn from the struggles. I am clinging to God's promise that "all things work together for good for those who love God." In that, I can take comfort knowing that even the hard times are blessings - they turn me to God, they remind me that my focus should not be on this world but on eternity, they give me the opportunity to be a part of a community that I could not I look back on 2013, I am reminded that I AM BLESSED.

Now looking forward to 2014, I'm excited! There are some major changes that will be happening in the next few months/couple of years. It's going to be up and down just like last year, but I'm still going to choose to focus on the positive. Yesterday I was actually really discouraged because I felt like I was in the same place I was this time last year and physically maybe even a bit worse. But making this list reminded me of the good that comes with the challenges...

I am thankful for 2013 and hopeful for 2014!