Whenever I go into another doctor appointment or another medical procedure I always think about the television show Grey's Anatomy. You know, the show where all the characters are Interns and Residents and always fighting over the patients with the abnormal medical conditions that require rare treatment. Every week they are fighting over patients. The question is always which one is going to have the coolest surgery or the patient with the most interesting history. While I love the show, I don't care for it so much when I am on my way to the doctors. I always begin wondering if they are talking about me and my medical condition or the history of doctor appointments and medical tests I have gone throughout my entire college career. It makes me wonder, are those interns and residents fighting over me and some other patient and who has the most interesting patient they are taking care of? Did they watch my surgery happen? See how closed up my artery was by one ligament or was I saved from that? Not that I was "exposed" but at the same time I was, and I hate even thinking about how many people saw me split open. And yes, I know they do not see it like that, but I do. haha
 It is crazy if you think of it like that. Granted, on Grey's Anatomy they are always one in a million cases that are featured, and MALS isn't that rare but it is crazy to think about it that way.
Two Thursdays ago, I went back to Dr. Thompson hoping something good would come of it. He wanted to perform an angioplasty immediately because of the fact my artery seems to be closing up again. So we scheduled an angioplasty for the very next day, Friday. Dr. Thompson had one of his partners perform the angioplasty because that doctor does angioplasties more often the Thompson. This doctor's name was Dr. Curcci. He seemed fine on Thursday but on Friday, I (of course) was crying and freaking out even though lots of people go through this procedure. Anyways, Dr. Curcci came in and explained what was going to happen and then started making jokes about how you "dont always get what you pay for" and whatever. I, personally, do not find those jokes funny....especially when I am the one going into the procedure room. In fact, I find it obnoxious that he would even make those jokes. When he came in, I was already in tears because of how scared I was and he did not make me feel any better. My mom immediately said something, and how it was not funny so he quickly shut up and left. The anesthesiologist then decided that he was going to actually put me completely to sleep because of how much I was already freaking out. Normally, the patient is just heavily sedated. But because I am allergic to the IV Contrast Dye the anesthesiologist was going to have to be in the room anyways in case there was an issue. Needless to say, I was terrified.
After the procedure I could not move my leg for hours and then I immediately got in the car and mom drove me back to the Lake for her to watch me. I was soo sore, it was crazy. I never imagined that tiny little prick could make you that sore.
The doctors never actually performed the angioplasty because when they got in there and saw my artery they decided the blood was still flowing sufficiently enough that they did not want to put something like that in me because it wasn't necessary just yet. Dr. Thompson wanted to perform the surgery because that way we wouldn't always wonder if the angioplasty would have solved the issue or not. So, it is good that we ruled out that I need the angioplasty...for now. ha.
The thing about going through something that feels like it is never ending....is that it feels like it is never ending. It seems like all my big medical procedures all seem to happen around the holidays. Which granted, there is always some holiday at some point or another throughout the year. But my body always seems to choose to need more attention on the holidays when we actually have things planned with other family members from out of town. This whole process is stressful on my whole family, more specifically my mom. She is constantly there at the doctors, my apartment, everywhere and anywhere I need her to be. The thing is, you don't realize how it affects other people, you are always focused on yourself, because you are the one going through it. I mean, after all, you ARE the one going through the needle pricks, medical procedures, and everything else. But you have to take into account, they are usually sitting right there with you too. That is one thing they do not always show on Grey's Anatomy or any of those doctor/medical tv shows. The emotional toll it takes on not only the patient but the family is hard. And it is one that you have to deal with together. And learn to appreciate everything they do help you through, no matter how much harder you feel it is for you, it is ten times harder for them to watch you go through it. That is something I have just now learned to take into consideration. And I will make sure to appreciate there actions more than I did in the beginning of this whole experience.

Test Results, Doctors, Worrying, Waiting...

Waiting...that seems to be a word that comes up a lot in my daily vocabulary, so does doctor, appointment, results, and worrying.

Sometimes I wonder what my recovery process would be like if I had developed more symptoms like some of the other girls I have met through the Facebook support group. Because I am still having severe pain and my most recent MRA scan shows my artery is occluded 50 percent, I wonder what I would be going through if I had developed neurological symptoms on top of everything else. Would the pain be worse? Would my artery be closed up even more? These are all just a few of the questions that have been going through my head since my most recent scans from a little over two weeks ago. Especially since Dr. Thompson says he will nto operate until I am 80 percent occluded. Which scares me...I do not want to even have a possibility of having to go through this process all over again.

So, as I stated earlier, my scans are not what I would like them to be. I was supposed to have a CT Scan but because I have been put through so much radiation in less than a year the techs, doctors, and nurses did not want to do anymore tests if they did not have to. Therefore, I had an MRA and MRI scan which was fine but just involved a lot of waiting around at the hospital.

As most of you probably know, I celebrated my 22 birthday on Friday, April 1. However, tonight was my family celebration...and of course after eating dinner I immediately was in the bathroom feeling like I was going to be sick and curled up because my stomach was hurting so bad. It is embarrassing to be in a restaurant and have to run to the bathroom or curl up and look uncomfortable in a nice restaurant.

On a different note, I am still working on trying to spread the word about MALS. I am determined to help other girls who might be suffering. My capstone is almost done and hopefully it will help me make some headway to spread the word!

Keep your fingers crossed!

Pain, Pain Go Away....

Hello,

As I write to you so early in the morning, I realize how much has happened in less than 6 months. It is absolutely unbelievable. When I started college in August 2007, I never expected that I would end my four years at Stephens being a post-surgical patient and still going through all the medical tests I went through at the beginning of my freshman year.

I have been experiencing a lot of pain lately. I have been taking more pain pills now than I ever have since my surgery. I went to my physician yesterday and he told me my pain pills and nausea pills are part of my problem and that I needed to start drinking metamucil to act as an anti-med to prevent the side-effects of my pain and nausea medicines. He also went ahead and scheduled me to have another 3D CT Scan because I am in so much pain. He wants to make sure I do not have more scar tissue forming near the celiac artery again. He said this would only happen if my surgeon did not get all the scar tissue in the first place. I do not really think he feels like this is totally possible, but he is just wanting to double check everything before it is dismissed like it had been for the past three years. . .

I have also been pretty depressed. I cry at the smallest things and go through mood swings like no one could imagine. I got prescribed anti-depression meds yesterday as well. I go from times when I am totally fine and within minutes I could be crying hysterically if something doesn't go as planned. Last weekend, I was told we would most likely not be going to the St. Patrick's Day parade and I cried for an hour. I was so upset. I think the majority of the reason is because I am still known around campus as the girl who had surgery. Stephens is NOT a big school. There are a little less than 700 students on campus, so word gets around pretty quickly. My sorority sisters still are wary of inviting me out on the weekends or to do anything else for that matter. So I am still thought of as being sick. Especially since I still miss some classes and go to the doctors more often than a normal 21 year old would. I mean even this week, I went to the doctor yesterday and immediately had x-rays and by the end of my appointment I was scheduled for a CT Scan. So tomorrow, I am getting up early to go get another CT Scan, since I am doing this I had to make my professors aware and some of my friends to remind them to get the class handouts or to ask them for the class notes. Like I have said in some of my other blog entries, the recovery process is hard and I knew it would be. I just considered the physical recovery process to be hard, I never realized how much of a toll it would take on me emotionally. I have trouble doing everyday tasks without crying. Which is why I was put on the meds yesterday. My doctor wanted his new nurses to hear my story so they would be aware of what I have been through and just hearing him talk about everything that has happened, made me cry for the next 10 minutes. He made jokes and said it is like every other visit I have had to his office (because I hate needles and usually I have had to get blood drawn.) haha.

Writing in this blog helps me express how I have been feeling for the past 6 months...or for that matter since all of this began. It is an intense process for anyone to have to go through and I am just glad that I have found an outlet for me to be able to express myself and get it all out in the open...no matter how embarassing it may be.


Thanks for following...

I will update more once my CT Scan results are back. Pray for good news!

Three Months Post Surgery

I went to the doctor yesterday for my three month check up. Things did not go quite as well as I had hoped.  I have been having  a little bit of pain on my right hand side that has progressively gotten worse. However, since my last post, I have ran my first 5K and performed with the dance team for the last 4 games (last night was our last game). Apparently I have pushed myself a little too hard with all the dancing and extra activity I have been doing. So, I was told to not dance for awhile and just stick with walking. My weight restriction has been lifted in terms of my incision, but because of the pain I am already having I have to watch the amount of weight I lift. So, I am not really off the restriction but atleast I can push a grocery cart. haha. Because of the pain I am still experiencing, they went ahead and drew my blood to make sure my liver is working properly, even though they feel it is just a pulled muscle from me pushing it just a little too much. My incision looks really good, it is completely closed up. So while my appointment did not go as well as I hoped, atleast there was some good news. I thought I would be released at yesterday's appointment but because of my pain, I wasn't. I have to go back in two months.

On a different note, I am currently trying to raise awareness about MALS so that other girls do not have to experience the pain I went through for years. I only hope that I can get people to listen and help me spread the word about this uncommon medical issue.

A Little Update

Sorry it has been so long since I have written. I am currently back at school. I have still had some days where I either do not make it to campus at all and other days where I make it to campus but end up going back home. I still do not eat that much. I weigh myself everyday and I fluctuate between 114 and 120. Today, I am 114.5. It is kind of scary how much weight I have lost since I actually had the surgery. But at the same time I eat one meal, maybe two. . .and that is on a good day. I can sometimes go a whole day before realizing that I have not eaten. I am just not hungry at all. End of story.

I have been allowed to go back to activity. I am walking up to six miles every day and running about 1.5. Running still gets to me, I am not exactly sure why. I am back to dancing on the Stephens Dance Team. Which is just the most fun I have had in quite a long time. In the dance we are practicing for the last basketball game, I grab my leg, pull it to my head and do a turn. It is an amazing feeling to be able to do that again. Granted, I get really unbelievably sore after every practice because I am using all these muscles that I have not been able to use since before surgery. But it is an amazing feeling to be able to do it again. My first performance was Saturday, February 12 and the night before I had this nightmare that had my incision ripping open when I was performing at the basketball game. It sounds gross, but the nightmare had me up the rest of the night wondering how everything was going to go. So when it actually came time to perform, I was really nervous but being able to do it again was a fantastic feeling.

 It is still depressing when it comes to dealing with activities that were planned last semester when I was missing so many classes, and I still get some sort of special treatment with all my classes and activities. While the "special treatment" helps me a little bit when it comes to classes, it isn't what I want. I just wish everything could go back to normal. I am still dealing with "depression" type issues. When I get dressed in the morning, I find myself crying just seeing the scar. Or when everyone starts looking for swimsuits and I still just have to look for one pieces so that my scar does not show in the sunlight. It is one of those things that I am glad everything has gotten figured out and hopefully fixed, but at the same time, it is sad when I am missing things that I would normally do. But you know, take what you can get and if I do not have to have pain for the rest of my life, then I just have to keep telling myself the scar is the little price I have to pay to live a pain free life.