It's been a while...

It has been over two weeks since I last posted. I haven't really been up to anything because I am on break. I talked to my doctor last week and updated her. I am doing very well. If anything, I am struggling to get in extra salt. She was super excited that I am doing so well. When we were in Minnesota we talked about getting rid of one of my medications. I am currently in the process of reducing it. I haven't really had any withdrawals symptoms which is AH-mazing! Hopefully by the time I go back to school, I will be completely off of it. Earlier last week I got a letter in the mail from the Mayo Clinic asking for my permission to use my records and charts for research. This means that Case Study #1 is under way! This is very exciting because a connection could be found between gastroparesis and POTS/dysautonomia. A cure could come from this connection, but that is hoping for a lot. Right now, I am just happy that there is progress being made between the two diseases.
Since we just celebrated Christmas and are about to start a new year, I wanted to say how thankful I am for each and every one of you. I am so thankful for my family and friends who helped me get through this year. I am thankful for the health that I do have. For as many things that I have been through with my health in the last year, there are numerous people who have so many more medical issues than I have. God has blessed me with an abundant amount things that there is no way I could not be happy with my life and current outcome. 2014 has been a struggle some days but joyous and fun other days. I cannot wait to see what God has in store for me in 2015. Here's to the best year of our lives!
Until next time,
A :)

POTSies: They're Everywhere!

POTSies are people who have POTS. Since I have received my diagnosis (and even before), I have met so many POTSies! Today, I had the pleasure of meeting a POTsie who I went to high school with for 3 years. Jess is a year younger than me and graduated from SJA in 2013. It was so nice to talk to someone who is in the same situation as me. She is in a sorority, does amazing things for her university, and works multiple jobs. She has a list of diagnoses as long as mine, or even longer. Although, my brother is a POTsie and is literally in the room next to mine, talking to Jess was amazing and something that I definitely needed. We didn't stop talking for 3 hours straight! We compared diseases and medications like nobody's business. People sitting next to us were looking at us like we were crazy. We also chatted about school, our blessings, our futures (and the multitude of things they could contain), and our pill boxes. I know that I am never alone in my battle with my chronic illnesses but to be able to talk to somebody about all of the these things and someone who is so similar to me was a great release!
In other news, I GOT A 4.0!! This is my first 4.0 in college and I could not be more overjoyed! For everything that I went through this semester, I was happy and thankful with the 3.75 I thought I was going to get.
Today was an overall amazing day! I hope everyone has a wonderful break (whether it has already started or you still a little while left)!
Until next time,
A :)

5th Semester: Complete

Well, I made it through my 5th semester at LSU! Starting this semester I never imagined the struggles and challenges I would face. I had more complications internally than I have had in long time. I struggled in my classes, even having to drop one. One hell of a semester would definitely be an understatement. For as many issues that have come my way, so many great experiences came as well. I have met so many amazing people this semester. I have been to a couple phenomenal concerts with even better people. I have been more active in both LSU Ambassadors and Theta than I have ever been. I know that I will definitely have a 3.75 for the semester and depending on how one class falls, I may end up with my first 4.0 in college. I feel so lucky to be able to continue to go to school and do the things I love even though I have medical conditions that half of you can't pronounce (it's okay, medical terminology is hard). From recruitment at the beginning of August to finals this week, I just want to say thank you to everyone who has been with me through all of this. Thank you to everyone who has continued to pray for me over these past few months. You have no idea how much it means to me. God has been so good to me in my twenty years on this wonderful earth. I can't wait to see what He has in store for me in the next twenty years and beyond.
Until next time,
A :)

Living for the Ups

I had my last class of the semester today. I can't believe that it's already December 5th and I only have a year and a half left of college! Well, I have to get through my finals next week but those should be nothing compared to the semester I have had so far.

Last night was one of the best nights of my life! I went to a Hunter Hayes' concert in New Orleans with some friends (shoutout to Jade and Kim)! I got to do a meet and greet, which I have been waiting to do for over three years now! To be able to talk to him and get a little bit of an insight into his life was something spectacular. He was so thankful for everyone coming out and for all of the returners to his concert (myself a 4th timer). To be able to meet him and have conversations with him were phenomenal. Some people probably think I am just some crazed fan, but if you knew this guy, you would understand. When I bought my ticket in September, I couldn't even fathom making it to December 4th and this was before everything got really crazy. I am so thankful to be able to have these adventures in life. And on top of it all, to have this experience with the girls I did was unbelievable. Last night, I had more fun that I could have ever thought possible. I laughed until I cried (something I haven't done in a very very long time). The memories I made will not soon, if ever, be forgotten. 

The concert itself was spectacular! We had early entrance so we (thanks to Jade and Kim patiently waiting) were able to be dead center up against the stage. The Railers were the first opener and they had a ton of energy. Next, were Dan + Shay. I fell in love with these guys when I saw Hunter in April and they were his first openers. I knew all of their songs and they even sang right to me on multiple occasions. Dan threw me the pick he used to play with after they were done with their set. I have tickets to see them at The Varsity, here in Baton Rouge in March and I couldn't be more excited. Hunter came on and played the longest set he said that he has ever played. He is one hell of a musician. He played multiple guitars (electric and acoustic), the piano, the drums, all while singing and running around on stage. He even played a song from his album "Songs about Nothing" that was released years ago before he had a record deal. Me, being the crazed fan that I am, know every song on that album. He introduced the song by saying this song is so old and none of you are going to know it but I have always wanted to play it in this venue. Only one other fan and myself (that I could see) knew the song and we were belting our lungs out. I was on the the large video screens twice! I was singing straight to the camera and even blew a kiss during the song Love Makes Me which was also when I was on the big screens at one of his other concerts. After it was all over, I got a pick from Matt (the bassist in Hunter band). And yes, I do know all of the names of the guys in Hunter's band. Overall, I could not have been more pleased with my experience from last night. At the bottom of this post are some of my favorite pictures of the night! 

Until next time, 

A

Thanksgiving Break Update

It's been a few days (or more) since I posted on my blog so I have a few things to talk about. I will number them because I like to organize my thoughts.
1. Happy (late) Thanksgiving!! I hope everyone had a wonderful day and break. My dad's side of the family came over to our house for Thanksgiving lunch. My mom's parents also came. We had a good time catching up and eating lots of food. On my dad's side, we have 5 cousins. I am the only one of the 5 that does not have a significant other. I was definitely worried about when the "boyfriend" conversion was going to take place because both of my grandmas seem to bring it up every time I talk to them. We made it all the way through lunch and dessert, even a little break before my Mawmaw asked me about getting a boyfriend. My response was "I'm glad it took you 'til 4 o'clock to ask me about this!" Much laughter ensued and then my dad said something along the lines of she doesn't have time for a boyfriend and the subject was dropped. That was the fastest I ever escaped the subject and for that I was very thankful (pun intended)!
2. Things that I am thankful for: everything. That may seem like a cop out answer but I am thankful for everything God has put in my life whether it is awful or awesome. I'm thankful for the struggles because they only make me stronger. I'm thankful for the bad days because they make the good days that much better. I'm thankful for all of the people who have come into my life over the past 20 years. I'm thankful for my family and friends. I am thankful for everything (although I don't say it as often as I should).
3. I have been back from Minnesota for 2 weeks now and I have encountered a few people who tell me that I am an inspiration to them. I am sorry if I ever seem awkward in that situation. I just don't know how to respond because I am not looking to be an inspiration, I am just trying to live the best life possible. I am happy that I can inspire people in any way, shape, or form but I am still getting used to that thought.
4. Yesterday I went fishing with my dad, my uncle, and my cousin in Pointe La Hache. I had a blast with them! Here is your shoutout, Uncle Carey!! We caught 99 speckled trout, 5 red fish, 1 bass, and Uncle Carey caught a perch! We probably caught another 50 redfish that were too small so we had to throw them back. All in all, I had a great time and caught a ton of fish! Hopefully we will go back sometime over the Christmas holidays.
5. I am starting to feel a little bit better. All of the things that I have to do make a difference. I can especially see it when I don't do something, such as not getting enough sleep or not drinking enough water. I think I will really start to see a difference over Christmas Break because I will have had about a month to adjust by then as well as I will have less on my plate. I will keep y'all updated on my progress!
6. I still have a bunch of homework and assignments to do before the end of the semester in less than 2 weeks so I should probably get on that!
Until next time,
A :)

Diversities

Today, I volunteered to talk to the new class of LSU Ambassadors about my diversity, my medical conditions, along with other seasoned (older) Ambassadors on a diversity panel. We introduced ourselves, our diversities, and how our diversity has affected either our life in general, LSU, or LSU Ambassadors then the new Ambassadors were able to ask us questions. I learned a lot about other Ambassadors that I didn't know before. One of the older Ambassadors said that whatever your diversity is, you can't compare it to someone else's diversity. I think this is something that everyone has to keep in mind, no matter how big or small your diversity may be. A lot of times, I am guilty of comparing my medical case to someone who may have cancer or a fatal illness. It helps me realize that what I am going through could be a lot worse. I also realized that this is only hurting myself because what I am going through is tough and just because I am not fighting off death right now, I am still fighting to live a life that I am proud of. Some people talked about broken and abusive households growing up and I would never change what I am going through for their situations. My family and homelife have gotten me through so many situations and for that I am eternally grateful. I guess that I just want y'all to know that if you are going through something tough or challenging, it doesn't matter how big or small it is. Do what you need to do to work your way through it.
Until next time,
A :)

I'm Still Having Fun

In the last couple of days, I have watched The Hunger Games marathon at the movie theater and went to Theta Semi. The Hunger Games marathon was spent with my Theta family (my little sisters and their little sisters and so on) and we had a ton of fun! Eight of the eleven members of my Theta family were able to make it out to the movies. I did not get my 8 and a half hours of sleep that night but I made it to Friday and that was my goal all week! I turned in my papers and projects. I got my hair done (because a girl likes to get pampered every now and then) yesterday afternoon in preparation for Semi last night. Semi was a blast! There was a band (which I am not a big fan of in general) but they were really good! This morning I was able to sleep in because I did not have any plans for once and it was amazing. I wound up waking up around 10:30 and just hung out in bed for a few hours. It was so nice not having anything to do today and just relaxing. I have already done some homework and exercised so I am declaring today as productive!
The whole point of this post is that I am not letting a new diagnosis stop me from living my life and doing what I love and having a good time. I am lessening my load and not committing to as much (which is hard for me) so that I can adjust to all of the new things that I have had to take on because of the POTS diagnosis.
Until next time,
A :)

P.S. Here are some pics from the last few days!

Back to "Normal"

I have made it through 2.5 days of school since I have been back and I am getting back to "normal." I am not as stressed as I was on Sunday and that is great! I have been doing my exercise and everything else that I need to do so hopefully things will start turning around for me soon enough. It's only been four days but I am already getting used to my new normal and it doesn't seem as bad as I thought it was going to be.
I want to thank everyone for welcoming me back home. The outpouring of love and hugs I have received in the last 3 days is more than I could have ever expected. I wish I could tell all of y'all thank you over and over because it means so much to me.
Until next time,
A

Home Sweet Home

The whole family has arrived safe and sound back in Louisiana. The appointment with my doctor on Friday went as expected. She went over everything again (we basically just chit-chatted about random things that don't really concern my health haha). My dad thinks that the dysautonomia/POTS may have caused my gastroparesis so I am now Case Study #1 at the Mayo Clinic to see if there is some link between the two. My doctor did say that most people grow out of POTS between 20-23 so we will see how long it takes me. I am going to start doing everything tomorrow. The five things that I need to do are: 1) sleep 8.5-9.5 hours a night, 2) eat as much salt as I can stand without changing the flavor of foods, 3) drink 2-4 quarts of fluid a day, 4) exercise 30 minutes a day (she said it should be breathy-sweaty), and 5) I have to take the medicine she prescribed me twice a day. I thought this was going to be easy compared to other things that I have gone through but I think I am going to have a hard time. I am already stressing out about it with all of the makeup work and normal work that I have to do, especially in the next week. I am praying about it and as I like to say, "I'll survive. I always do." I think this is going to be hard just because of how involved I am and the fact that I don't have a whole lot of time to spare as it is. But I am willing to make it work because this can make me feel better. One thing I told my doctor during my first appointment was that I think I am working at about 70-80% (health wise) and I want to be at 100% or as close as I can be. Before we left my appointment on Friday, she told me this should get me working at 100% and that made me smile from ear to ear. She also gave me hug (and y'all know I'm a hugger!).
My dad came up with the idea that I should start an organization that spreads POTS/dysautonomia awareness to doctors and pediatricians in particular. If anyone has any information on how I can do this, please talk to me! I think this could be the start of something amazing, if I can just get it going.
I want to thank everyone for all of their prayers and support! It really means the world to me. Some days are really hard (like today) and to know that I have people that care for me and love me, really makes me feel...I can't even put it into words how happy and grateful it makes me feel.
I want to give a shoutout to the Mayo Brothers and Father Mayo (somewhere up in heaven) for starting one of the most phenomenal medical institutions in the world. If y'all ever get a chance to learn about the history of the Mayo Clinic, it is some pretty awesome stuff! I am going to leave y'all with a quote today from Dr. William J. Mayo (one of the founders of the Mayo Clinic), "We must not forget that happiness is a state of mind, not necessarily of body, and that life is what each person believes it to be. The sick man needs faith, faith in his physician, but there comes a time when faith in a higher power may be necessary to sustain his morale."
Until next time,
A :)
P.S. I'll be posting all of our pictures from the trip on Facebook either tonight or tomorrow!
P.P.S. My creatinine levels are down to 0.9 (which is great!) but even the Mayo kidney doctors couldn't figure out why I went into acute renal failure or what caused it.

We Have a Diagnosis

Hey y'all! I'm sorry I didn't post yesterday. I wasn't feeling up for it. We have good news though! I was diagnosed with POTS/dysautonomia. This is a syndrome of the autonomic nervous system. It is what Lance has so my family is pretty well versed on it already. Today, we were supposed to meet with my doctor but she was sick so we had to push back my appointment until tomorrow at 2:45. Lance and my mom are flying home tomorrow (so Lance can go to homecoming on Saturday night) from an airport that is 1.5 hours away from here. We are bringing them to the airport and then me and my dad are driving back to Mayo for my appointment tomorrow afternoon. I had an education session with a nurse practitioner yesterday and she went over all of the things that we already know because of Lance. POTS is something that a person is supposed to grow out of when it is found in teenagers and young adults. We think that I have had POTS since I was a sophomore in high school when all of my symptoms first started to present themselves. POTS has only been diagnosed in teenagers since 1999; it is very new disease and very little is known about it. There is not very much research on it either. This is similar to my gastric stimulator in the fact that we are kind of rolling with what the doctors can do for us and seeing what happens. Things that I have to do to feel better: eat lots of salt, drink 2 to 4 quarts of fluids (mostly water) a day, exercise 30 minutes a day (I will work my way to that), sleep 8.5-9.5 hours each night, and take the medication my doctor prescribes for me. Also, no more caffeine for me. I will know more things specific to myself and my case tomorrow when we meet with my doctor.
Until next time,
A

Test Day 1 - Done

Today I was running tests from 8am until about 11am. I did blood work, a urine sample, EKG, chest x-ray, breathing test, and an exercise test. I was blown away by how efficient the Mayo Clinic was. An itinerary was sent to us a few months ago when we first booked the appointment. When we met with our doctor yesterday a new one was printed for each Lance and I. Each patient here gets their own barcode that is printed out on their itinerary. My itinerary is 13 pages long (and we are only scheduled to be here for 4 days!). At each different desk that you check in to, the receptionist scans your barcode and all of your information pulls up. I don't have any of the results of the tests I did today. We will probably find everything out on Thursday when we meet with our doctor again. Tomorrow, I have to do a tilt table test at 8:45am and then I will meet with one of my doctor's nurse practitioners in the afternoon.
It snowed last night and during the day. Although it was below freezing outside, I woke up sweating and was just super hot this morning. I knew I would have to do lots of walking around and exercise today, so I decided to just wear nike shorts and a short sleeved t-shirt. The looks I got were hysterical! We decided to take a walk around downtown this afternoon when it was 26 degrees with a wind chill of 12 degrees, just to say that we did it. We found a few cool shops on our walk and were able to warm up for a little while. We went into a Barnes and Noble that used to be a theater and it still had the original front/outside as well as the inside walls and ceiling. It is on the National Registry of Historic Places. Although, we are sick "kids," we still like to have some fun when we have to go to the doctor.
Both of my parents just told me that I had typo in my blog post yesterday. I apologize for any past mistakes and any future mistakes because I am no J.K. Rowling.
Until next time,
A

1 Day Down, 3 To Go

Day 1 at the Mayo Clinic is over. Both Lance (my little brother) and I each had an appointment with our doctor. Mine was at 12:30 and his was at 2:45. We were in the appointments from 12:30-5:30 straight but they were very productive. The doctor did an exam and looked at all my symptoms and she is pretty sure that I have POTS/dysautonomia. But multiple tests have to be run to confirm the diagnosis and to decide which medications I should be put on. I have a good bit of tests to do tomorrow starting at 8am and going until about 12pm. I have to get blood work done, a urine sample, an EKG, an exercise test (I have to ride a bike for 10 ten minutes), and something else that I can't think of right now.
This morning we had about 4 inches of snow and it was 29 degrees in Minneapolis. We left Minneapolis and drove to Rochester. Rochester doesn't have any snow yet but it is supposed to snow overnight and tomorrow. We are staying at a hotel that has this "SkyWalk" thing which are just tunnels above ground that connect a bunch of buildings. So we can walk to the Mayo Clinic without ever having to walk outside, which is really nice when the high for the week doesn't get above 30.
I wanted to keep y'all informed although we don't really know anything or have any results yet!
Until next time,
A

We Made it to Minnesota

My family arrived in Minnesota yesterday afternoon. Both of our flights went smoothly. We were able to watch the LSU Bama game. We watched the first quarter at a restaurant named Dick's Last Resort and their slogan is "Service with Sarcasm." I was very skeptical at first but had a great time. I was/still am so sad that we lost the game last night but I am always proud to be a Tiger and I know our boys went out there and gave it their all.
Today, we went to the Basilica of St. Mary for church in Minneapolis. It was the first basilica in the United States and it was beautiful. After, we went to the University of Minnesota's Theta house. This was so much fun. I got to go inside and talk to the girls. I also got a the tour of the house. It was awesome getting to meet and connect with new sisters (I think this word is super cliche and I don't typically use it but it fits in this situation). We spent the afternoon at the Mall of America, which was a blast!
The weather here has been ridiculous compared to what we are used to in South Louisiana. The high for the whole week is 39 degrees. Tomorrow it is supposed to snow (yayy). We are headed to Rochester tomorrow to go to the Mayo Clinic. We have about an hour and half drive to get there. My first appointment is at 12:30. I will hopefully update y'all tomorrow night!
Until next time,
A

I'm Back...But Only for a Little While

I am back in school but only until Friday hahah. I went to class yesterday, too. My teacher decided that I would take my make-up exam from last week this morning, which I wasn't too happy about because I hadn't looked at any material. But, I just took it and got a 90, so I am happy!!
I had my blood tested on Monday morning and my creatinine level is down to 1.4. This is good news but it stills needs to go down a significant amount. I am not having my blood tested anymore because we will leave for Mayo this weekend and I will have a full blood work up done when I get there next week. I am continuing to down water and Sprite (because it has no caffeine) like it's my job. I am feeling better. My back pain and nausea/stomach yucky-ness has gone down incredibly. Although, I am pretty sure I have a sinus infection now (if it's not one thing, it's another).
My parents and I decided that it is best if I fly out with them on Saturday rather than Sunday after the Bama game. This is mainly because they don't want me flying alone because all this kidney drama that has happened in the last week. With tears in my eyes and a crack in my heart, I sold my Bama ticket yesterday. But believe me when I say I will be wearing purple and gold on Saturday and yelling "Tiger Bait" in every airport I set foot in. We will be in Minnesota in time for the game, so we will be able to watch it live...just a few states away.
Hopefully my next update will come from Minnesota!
Until next time,
A

Forward Progress

First off, thank you to everyone who has reached out to me in the last few days. I appreciate it more than you know!
I am doing better. I am feeling slightly better and my creatinine levels are improving. I am still not nearly where I need to be but forward progress is forward progress and for that I am thankful. I think it is best if I do this in a time line so that y'all can keep up with me.
I'll start off with some basic information you should know. Creatinine is a waste product in the blood that should be filtered out by the kidneys. The average creatinine level is 0.7 for a woman.
Wednesday at 12:00pm - I went to the family doctor. I had my blood drawn and my creatinine level was 2.56
Wednesday at 5:00pm - My mom and I went back to the doctor. I did an ultrasound of both of my kidneys but everything came out fine. My blood was drawn again and the creatinine level was 2.47. This confirmed that something was definitely wrong. At this point, I got fluids via IV at the after hours clinic next door to my doctor's office.
Thursday at 8:00am - I got my blood drawn for a third time in less than 24 hours. My creatinine level was 2.36.
Thursday at 2:30pm - My mom, my dad, and I went to a renal specialist. He has no idea what is causing this because all of my urine samples came back fine and so did my ultrasound but my creatinine level was still very high. He said at this point we will just wait it out and see if the levels continue to come down. I need to continue to drink fluids (currently I am drinking water and Sprite) and rest. On the way home from the renal specialist, I threw up (on the side of the road and not the car, thank goodness!). We texted the renal doctor (yes, we have my doctors' cell phone numbers) this information and he said that nausea is a symptom of renal failure. This was a little scary because it could mean that I was moving backwards. I continued to drink my fluids when I got home. As it turns out, all of the symptoms I was having this past week can be attributed to my acute kidney failure. My back pain (and its position) is a little bizarre but has lessened so could be somewhat related to my kidneys.
Friday at 8:00am - I had my blood drawn for the fourth time in 2 days. My creatinine level came back and it was 1.9. This is a large jump down, which is great! It is still high but we are making forward progress.
I will be going back to the renal specialist on Monday morning to have my blood drawn and my creatinine level tested again to see where I'm at. Thank you again for all the prayers and for checking in on me. Please keep the prayers coming!
Until next time,
A :)

You Can't Make This Sh*t Up

I hadn't planned on really updating too much before I actually went to Mayo but my medical issues decided otherwise. I have continued to have awful back pain since my last post on Friday. On Saturday, I woke up nauseous and my stomach was churning. This has persisted until today as well. Today I decided that I would finally go to my family doctor instead of sticking it out until we fly to Minnesota next Sunday. Thank goodness I went to the doctor! We ordered a CAT scan with contrast (but that has to be approved by insurance), blood work-up, and a urine sample. This took place at 12:30. I did the urine sample and blood work-up. I left the doctor and went pick up prescriptions for nausea, pain, and a muscle relaxer. I got back to the Theta house then decided I was going to take a nap around 3:15. Around 4, my little (sis) came in my room and I still have no idea what she was telling me. But I had about 20 missed calls from my mom, brother, and doctor. Finally, I woke up and called my brother and he said something was wrong with my kidneys and my mom was coming to pick me up to bring me back to the doctor. We got back to the doctor, I had an ultrasound and blood work done. The ultrasound was fine but the blood work was not. I am in acute renal failure. I had a liter of fluid given to me via IV. I am currently at home with my family and cats watching out for me. I will go back tomorrow morning to have my blood tested again. I will most likely wind up seeing a kidney specialist tomorrow whether the results come back improved or not. People have asked if the fluids have helped, but I don't feel any different than I did at 12 when I arrived at the doctor's office earlier today. So the answer to that question is no.
Shout out to my friends who got me flowers and a card tonight! I love y'all! I am keeping a positive attitude through all of this. My mom I laughed more tonight because you really can't make this sh*t up. Please keep me in your prayers over the next few days. I will keep y'all updated.
Until next time,
A :)

Volleyball, Pain, and Flights

So I was hoping to post about how one of my volleyball teams had won the championship, but neither did. :( No offense to my Wednesday night team but we were seeded 7th of 8 teams and had no chance. We lost the first game (21-18, which was much better than I expected). On the other hand, my Thursday night team was seeded 3rd of 8 teams and I thought we had a championship in the bag. We played well in our first two games but in the finals fell apart (25-12) against a team who was scrappy and could roll instead of just smashing the ball. If you win the championship, you get a tshirt and that is always my goal. I have played out at Mango's Volleyball (off Sherwood Forest) since the summer after 8th grade. That comes out to about 7.5 years (wow, I feel old). In my time out there, I have only won a championship twice. Although neither of my teams won a tshirt (yes, that is all I really care about), I am glad that I was able to play two nights a week this season. I am hoping to play two man in February next year, something that I have yet to really explore.
In my last post I talked about how my back was hurting and we didn't really know what was going on. Well last night my back was killing me while I was playing volleyball. It has hurt the last few weeks when I play but I haven't been in that much pain in a while. I may or may not (definitely did) have a sobbing meltdown in the car yesterday on my way home from volleyball. I am still in a good bit of pain today, but nothing I can't handle. I only have two more weeks until we fly out to Minnesota. I am holding out until then in hopes that the doctors there can tell me what's actually going on. I am not asking for pity or trying to complain (because honestly I hate when people complain); I am just posting to update everybody on what is going on. Also, it is very nice to get these things off my chest even if I am not telling it to someone face to face.
I do have a funny story to tell y'all about how my family is flying to Minnesota. We were supposed to leave Saturday, November 8th but guess who LSU plays in football that day? Alabama. At home. And anyone who knows me knows that I would never miss that game in Death Valley. So my parents and Lance are flying out on Saturday while I go to the game. I will drive to New Orleans Saturday night and stay at one of my best friend's house. Then we will wake up at 4:30/5:00am to get to the airport because my flight leaves at 7:30 in the morning on Sunday. Shout out to Sarah for being the best roomie eva!!
I want to send a huge thank you to everyone who is reading this blog. It has over 800 views in less than 3 days! I didn't realize that many people cared to read about how my life was going. Even if you don't talk to me or check in with me, know that I appreciate you just reading and keeping up with me. Also, if you ever have any questions/comments/concerns for me, please feel free to comment on here. I am always up for explaining or talking about things! That's all I've got for now!
Until next time,
A

A Summary of My Life...in Medical Conditions

First off, I want to thank everyone who has reached out to me in the last few hours. The outpouring of kind words and prayers affect me in so many ways. I can't even believe the amount of people who have talked to me and checked in on me; I am just so thankful to all of you!
On to a summary of my life in medical conditions. This is gonna be long so just bear with me please. Back in 2003, I had a scope done because my stomach was hurting. I was pretty much self diagnosed with being fructose and lactose intolerant. I cut out milk and sugar and things improved. Something that the doctors found in the scope was that I had corn still undigested in my stomach that I had eaten the night before (just keep this in mind for later on). In sixth grade (2005-2006), there was a scoliosis examination at school in PE. A family friend did mine and said that she would have to call my mom just to get it checked out. Turns out that I had scoliosis and it was quite bad! I wore a brace at night for about 2.5 years. My back is still very curved but I never had to have surgery!
The summer before 9th grade (2008) my back was killing me and my family and volleyball coach thought I had a herniated disk. I went to my scoliosis doctor in New Orleans and had a MRI done. After that was done, we found out that I had an ovarian cyst that was 8.5 cm in diameter. We let it drain itself and things were fine. Then I had another one and I was put on pain killers. It went away but then I had a third one in February 2009. That's when I wanted something besides pain killers. At this point, I was a 14 year old who had been to the gynecologist more times than I wanted to admit. I was put on birth control and the cyst have yet to return. About a month later, I torn a ligament in my wrist playing volleyball and was in a long arm splint for 3 months. Did I mention it was my right arm which is my dominant arm? Well, it was! I got through that and moved on with my life. Sophomore year of high school I seemed to be sick every other week. My pediatrician diagnosed me with a range of things: sinus infection, bronchitis, a yeast infection, etc. Come the spring of that year, I was having serious heartburn. I was diagnosed with acid reflux and put on antacids. The heartburn continued so my pediatrician sent my to a gastroenterologist in Baton Rouge to help me. Well that summer my stomach started to hurt and it was quickly getting worse than the heartburn so I told my gastroenterologist to find out what was wrong with my stomach before we tried to fix the heartburn. My junior year of high school I seemed to be at a doctor's office at least once a week running some type of test. In November 2010, I was diagnosed with gastroparesis. This simply means that my stomach does not digest food in a timely manner. Normal people digest a meal in 1.5-2 hours where I take 8-10 hours to digest a meal. I had ridiculous stomach pains as well as headaches, leg pain, and lightheadedness on top of the heartburn.
This is where most of you know my story from. I went to two gastroenterologists in Baton Rouge who tried different regimes of medications that didn't work. Then I went on to another gastro doctor in New Orleans and he told me it was all in my head. I said and I quote, "That is a load of crap!" That was a very short visit. Next we went on to see a gastro at Texas Children's Hospital in Houston. It is now the summer of 2011. I went to Houston for a couple days a month for about 6 months. He tried a few more medications that didn't seem to work either. He said we could try injecting botox into the sphincter muscle at the bottom of my stomach to see if it would relieve some of my pain. He did tell us that it may or may not work. We tried it and it worked but only for a week. So the next month, we tried it again and it didn't work at all. After that we contacted my current doctor in Gainesville, FL at Shands at UF. It is now early December 2011. We had a few connections to the doctor and were able to get an appointment for the first week of January (it was a miracle to say the least). My mom, my nanny, and I went to Gainesville the first week of January to find out if I was a candidate for a temporary gastric stimulator. I call it a pacemaker because it is much easier for people to understand. When we got to Gainesville, the doctor said I was a great candidate for the temporary pacemaker which would then in turn let us know if I was a good candidate for the actual gastric stimulator. We went back the first week of February and put in the temporary pacemaker. It was a huge success! We stayed in Gainesville for about 5 days to make sure that everything worked the way it was supposed to. Now we only had to wait on insurance to approve the actual gastric stimulator that the doctor would have to implant. On February 21, 2012 (Mardi Gras day that year), I had a gastric stimulator implanted in my stomach. I woke up from surgery without the pain I once had. It was instantaneous. Although I had a boat load of pain from the where the doctors cut my skin and muscle, I no longer had the pain that I did before surgery. It took me probably 3 months until I was walking at a normal pace and almost a year until I was "back to normal." Over the course of my junior and senior years of high school I missed well over 50 days of school but graduated with a 4.26, something that I am very proud of.
I started LSU in the fall of 2012 and most of you have met me since then. I was and still am very open about everything that has happened in my past. My freshman year I still struggled with pain and how to manage having a foreign object in my body. Playing sand volleyball was tough but not something that I was willing to give up on because I had a new disease on my resume. I continue to play volleyball and I am even playing twice a week these days (finals are this week!!). Anyways, back to medical stuff. College has been pretty easy as far as medical needs although every now and then my stomach will hurt or vibrate. Yes, I can feel my pacemaker vibrate sometimes. Contrary to what you would think, my pacemaker does not help me digest food any faster but it does help with subsiding the pain and symptoms I was having. Back to having the corn still in my stomach in 3rd grade. I think I have always had gastroparesis, the symptoms just did not present themselves until I was a sophomore in high school. 95% of people will never know what caused gastroparesis and I am in that 95%. I have come off a significant amount of medications but I still take 6 pills a day which is small compared to the 22 I was taking only a few years ago. Again, college has been pretty smooth for me. I went for my 3 month check up for my pacemaker the summer before I started college and they told me I didn't have to come back for a whole year, which was amazing news! I went back the next summer (2013) and they told me I didn't have to go back for another two years! So I will head back to Gainesville this coming summer (2015) to do another check up. As for right now, the pacemaker will stay in my stomach for the rest of my life. The battery will have to be changed out in about 7 years but that will be an outpatient surgery and shouldn't be a big deal. I'll cross that bridge when I get there.
Summer 2014: In June, my back started to hurt really bad and it felt like the pain I had with my ovarian cyst almost 5 years ago. I went to my family doctor and had an ultrasound done and they didn't find a cyst. I did a urine sample and had a UTI, gross I know. I was put on some antibiotics but the pain in my back persisted. In July, I went to my family doctor again and I told her I wanted an ultrasound done and x-rays. I know my body really well at this point and know what I need. Nothing came back from either of those tests. We did another urine sample, nothing. So she said it must be a muscle strain. I didn't think that was it at the time and I still don't. I went to PT for about a month and a half and the pain subsided for a little while. In the last week it has come back full force. I have also had headaches almost everyday for a few months now.
Now on to my current situation. My brother was diagnosed with a syndrome called POTS last November at the Mayo Clinic in Minnesota and my parents and I think I have it as well. POTS stands for postural orthostatic tachycardia syndrome. This means that he does not have enough blood volume and his heart has to work overtime to get blood circulated through his body. It actually has a pretty simple solution. Drink a gallon of water a day, eat lots of salt, exercise 30 minutes a day, and take a beta blocker a few times a day. This may not seem simple to most of you but for me and everything I have been through this seems like an easy fix. With all of these problems arising again, my family decided that it would be best if I went to the Mayo Clinic and had a full work up done just like Lance (my little brother who is 17) did last year. Right now I am just holding out until I can get on a plane and fly to Minnesota. I don't know that I have ever been 100% well/healthy in my life and I am hoping that the doctors at Mayo can help get me there. Obviously, I know that I will never be 100% healthy but maybe one day I can feel that way.
I created this blog, not to ask for your pity but to update everyone on how I am doing over the next few weeks and while I am at Mayo. I hope to continue with the blog long after Mayo to keep everyone updated on my life and how I am doing. I want people to know that although I have multiple diseases, I am not letting that stop me from living my life. I had a couple years where I barely made it to school and back. Now that I have the opportunity to do things, I am doing everything I can get my hands on. It is one of the reasons I stay so busy and I wouldn't have it any other way. If you made it this far, consider it an accomplishment :). Thank you for reading! I am sending my love!
Until next time, A
P.S. I'm sorry if there are any grammatical errors

My First Blog Post!!

Hey y'all! It's Adrienne here. This is my blog so that you can keep up with my medical life as well as my regular life too! I will be headed to the Mayo Clinic in Minnesota the week of November 10th to run lots of tests because I don't know that I have ever been 100% "well" in my life and we (my family) want to get me there. I will make a post in the next few days to give a summary of my medical history so y'all know where I'm coming from.
Until next time :)
-A