My Awesome Lumbar Puncture & A Medical Update

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Time for a medical update. I know it has been a good few months, but until recently there was nothing really to report. I’ve had good days, bad days and worse days but nothing noteworthy. However, since I met with a brand new neurologist things have gotten a little more interesting.

I used a little different philosophy this time around, when finding a neurologist. As you may recall I had my old neuro, Dr. Jerry leave, and have been looking for someone since. I had that horrible episode with Dr. A as I wrote about in My Blind Date, and I even went back to Dr. Jerry’s partner which was almost as bad. I needed to change my entire way of going about this. That is when I remembered something another Chiari patient said on Facebook. She said that she went out and found someone just out of medical school, and trained them herself on our illness. So that is exactly what I set out to do. I found a Neurologist that was only out of school for 4 years and made an appointment. Of course I had to wait a long 3 months before I could see her, but some things are worth the wait.

I’m not saying Dr. Z is perfect but she definitely has potential. She listened, she knew what Chiari was and had some great ideas. First thing she decided to do, was order a Lumbar Puncture to test my CSF pressure. Dr. Oro wanted this done but I couldn’t get anyone to actually order this. Dr. Z also said there were a few medications I had not yet tried, that she thought might help. She also wanted to get me sleeping again. Then we would meet in 2 months. Perfect first visit, in my opinion.

The Lumbar Puncture was scheduled 4 days later and was one of the most amazing experiences of my life. I’ve had  one done before to test for MS, and ended up getting  a spinal headache, and needing a blood patch. It was horrible. To say the least, I was not looking forward to this. That all changed when my nurse came out to get me. While going through the questions, and explanation of the procedure she told me that she also has Chiari. What? Another person in UTAH that has Chiari?! I was ecstatic. Okay not that I was happy this beautiful young lady had to have this crap of a condition but, I instantly felt not so alone. We went on to talk another 10 min about our respective lives, then she got me ready for the doctor to come in. His name was Dr. Jackson and he was super nice, and very competent. He also had a connection to me that was almost as cool. He used to play basketball for Stanford and he ended up losing to Utah in the Sweet 16. He talked to me about sports the entire procedure. It was all around pretty damn cool. My Chiari friend/nurse took care of me during the 45 min observation time after and we continued talking. It was astonishing. We had so much in common. I know that shouldn’t come as a surprise but, I have never ever met anyone in Utah that has Chiari. I know they exist, but they all must be hiding. I plan on writing soon about how it feels to be isolated, so I wont get into that now. However, she was wonderful, and I feel stupid I didn’t even catch her name, or even ask her for her number so we could go out to lunch or something. Who knows maybe she will see this blog and contact me. Hey we all gotta dream right? 😉

After I recovered from my Lumbar Puncture, not getting more than a moderate spinal headache, I started my medication. I guess I should say I started my second medication. Since the day of the appointment with Dr. Z, I was taking Trazadone for sleep. It is technically an anti-depressant, but Dr. Z likes to prescribe it for sleep. She says it is much more effective and safe than Ambien which I was taking before. The Trazadone works great and I have even been feeling refreshed in the mornings. I haven’t felt that for years. It didn’t take long for my body to get used to the Trazadone so, following the LP, I started the migraine preventative she wanted me to try. It is called Depokote, and like the Topamax I was on for years, it is an anti-seizure. Dr. Z says that it is very effective, but there are some risk it may damage your liver. Because of this I needed to take a blood test to ensure my liver could take it and then be tested again after a month. I didn’t make it that far. Heck, I barely lasted a week on it. I felt severely ill from the very first dose. Initially I figured I just needed some time to adjust and the side effects would go away but 5 days later they were even worse. I was dizzy, nauseous, exhausted, feeling faint, my headaches were more frequent and when I went to see Dr. Ken for a routine visit my blood pressure had plummeted. I felt worse than any flu. I ended up calling Dr. Z and telling her what was going on, and she immediately took me off of it. The next day I felt great. It was remarkable the difference. We meet in June, and I expect she will know what went wrong then, and most likely have a different medication to try.

I love the feeling of knowing I have someone working on making me feel the best I can. I have been without a  good neurologist for so long, I forgot how much just having someone put your well-being first, feels like. I’m not delusional, I know the day may come where Dr. Z doesn’t meet my expectations, or she may give up like so many before her, but I am gonna take what I can get for now.

Anything You Can Do, I Can Do Better

 
*For some reason this post, published in italics. Was not intentional.* 
 
My husband is a topper. He insists that he isn’t but, trust me on this one, he is. He is always 1 upping me on everything.  When we first started dating I took him to Lagoon. (This is a small amusement park that we have here.) Nearly every ride I heard the same thing. “Oh I’ve ridden on this at such and such place but the one I rode was better” If I hadn’t have liked him so much I would have been annoyed. Still til this day he does this, except for he will now at times put a little twist to it. I will tell him something, maybe an idea, and he takes what I say and presents it as his own idea right back to me. All that is different is he will change the wording.  This shouldn’t be confused with active listening, he is literally pitching what I said, as if he came up with it. Sure it bothers me every-time he does this to me but I adore him too much to get mad. I just call him on his topping, make fun of him a little and move on. But truth be told, and husband excluded, I can not stand toppers. 
 
Nothing is more irritating then telling someone you are going on a trip that you are really excited about, just to have that person tell you “Oh yeah well I am going somewhere better and for longer.” For me it isn’t even about them getting to do something that very well may be better. It is the fact that they had to top me. What is wrong with just wanting someone to say “Oh that is so awesome! I bet you just cant wait!”  It bothers me when a friend or family member can’t just be genuinely happy for me. I am happy for them. *Obviously in cases of topping I really don’t give a crap* As bad as this type of topping is, there is one that is worse. Negative Topping. The ‘Oh poor me, I have it worse’ Topping. I’ve found that having Chiari brings out these Negative Toppers like crazy.
 
 Everyday I am reminded of how great I have it. I do not have some terminal cancer, I am not a quadriplegic, I can see, hear and take care of myself. There are millions of people who have it worse off. However, Chiari sucks. It is a hard illness to live with. Chiari in itself is not terminal, but people die from Chiari related complications all the time. There is an exuberant amount of negatives facing me and other Chiarians every day, but we know it could be worse. So when I am asked how I’m feeling or I mention something that is going on in my life to one of my friends, and they respond that their headache is worse, or they have something wrong with them that is more awful that what I have, I feel like strangling them. This may sound horrible but, it is how I feel.  It is entirely possible that what they are saying is correct, however it wasn’t about them in the first place. I say “Yuck, I am so nauseous”, there is no reason you need to say “Well I threw up today.”  Besides the more they do it the less I believe they are actually experiencing any ailment at all. That is the problem with toppers, they are rarely honest about what they are topping, they are just focused on topping. 
 
I have a friend that does this to me constantly. Every week they have some new malady. It has gotten so bad that I rarely post any Chiari related complaints on Facebook anymore. I won’t even answer this person’s texts about anything health related. It is ridiculous. There have been more than a few times where I would mention one of my many symptoms and lo and behold a couple of days later they had the exact same complaint. Surely I do not hold a patent on headaches, nausea or even one-sided numbness however, it happens too much to be just a coincidence. Also like I said before, the more this person ‘tops’ my illness, or even copies mine, they lose credibility, not to mention my respect. The part that gets me the most is, why on earth would anyone want to top someone’s sickness? Attention? What is there to gain by being sicker than someone else? I can honestly say I do not ever want to have it worse off than someone else. My headaches are bad enough, if you have one more awful you can keep it! 
 
The reality is having Chiari means that I get the pleasure of dealing with difficult people on a day-to-day basis. Those negative toppers I talked about, people who are completely ignorant to the fact that I am actually sick, and plain ole’ jerks. Not that I didn’t have issues with people before, it just seems like my Chiari magnifies this matter of contention. The best solution I have found, is to remove these people from my lives. Or at least the situations. Certain people I do not discuss my Chiari at all with. I’ve learned that they will never try to understand, or in other cases never stop trying to be worse off. Other than that I have found that a little patience goes a long way. Nothing they say or do matters in the long run, but how I react does. 
 
 

The Everlasting Struggle

For a woman in her late 20’s, one of the most horrifying things to do is go bathing suit shopping. We already hate the fact that our bodies don’t look like we are still 17, yet every year we stand in front of those 3 way mirrors in countless department stores and torture ourselves, trying to find a bathing suit that we can feel good in. Last year I remember going to at least 10 different stores looking for something that I could put on in front of my husbands family and not feel like a whale. My search was hindered by the fact that I can not wear a suit that ties around the neck. My neck is forever screwed (even after physical therapy) and all that weight of my chest or whatever, gives me an immediate migraine. This really is too bad because most of the suits that fit my body type, do in fact tie behind the neck. I even have an adorable red, black and white two piece that fits great but have not been able to wear it for years because the dang thing ties behind the neck! So day after day, store after store I went on my search for something that drew attention to my assets and away from my faults. Every trip ended the same way. Me feeling like I was worthless and the grossest thing that had ever tried to fit into a swim suit.

Obviously I know that there are much heavier women that struggle with this and I probably sound like some kind of spoiled brat but I think the reason I have a such a hard time with anything weight related is I know what I have lost. I dont mean to be insensitive or rude, but we all know not everyone is created with the same body type. There are so many people look nothing like what society says a woman should look like yet are perfectly healthy. People are “big boned”, or it is just in their genes. It isn’t in mine. Or I guess I should say it wasn’t. I was always tiny. My parents even got DCFS called on them when I was a toddler because neighbors thought they were starving me. Sure when I was a teenager I sprouted these massive hips (for my body) and very big thighs but I still was barely a size 1-2. When I got married they had to alter my size 2 dress down to my size. You get the point. I could go down this in the glory days road forever.  I know our bodies change with age and becoming a mother, but they don’t change that much. I’ve mentioned before that now I am around a size 10. Again I understand that, a size 10 isn’t that far from average but on my small frame it looks like I’m much larger. I’m only 4’11 so any extra pound on me is like 5 on a taller girl. This is another reason I hate how much I weigh. I can see a much heavier woman and think “Wow! She looks really good, why can’t I look that great being my size?” .

Perhaps though it is all about control. I don’t get the option to control how much I weigh. It is largely out of my hands. My Chiari has taken that control away from me.   No having Chiari does not make you gain weight on its own, but depending on your symptoms it just might. I cant exercise. This is not breaking news to any of you, my physical limitations have drasticly changed since I was diagnoesed/had surgery. I’m not the only Chiarian that deals with this problem. However some of us have no issues walking on a treadmill, going for a bike ride….whatever. And just in case you were wondering, yes, I am insanely jealous of you. 😉 Being forced to have a sedentary lifestyle takes away that control most people have over the way they look. Please don’t take me wrong, I do not think that any person that is overweight chooses to be, this is not what I am saying at all. What I am saying is based on my metabolisim, my age, my genetic make up, and everything I know about how MY body is, the reason I weigh what I do is because of my inactivity.

So what can I do since I can’t burn calories the way the rest of you do? The answer is obvious right? I have to focus on the things I can control, focus on what I choose to put into my body. Although I have only been struggling with my weight for a few years, I know diets dont work. What does work is eating healthy. There is a huge difference. Things like eating often, drinking water, and adding more fruits and veggies to your diet are the types of things I am talking about. While I have already been little by little doing these things, I jumped at the chance to push it one step further. My cousin in law posted on Facebook about an 8 week challenge she was doing and I joined.

I love competition, come on what girl doesn’t? And it is definitely a competition. We are all putting money towards the prize for the competitor whom has the most points after the 8 weeks. You earn points by doing simple things like I already mentioned. Drinking 64 oz of water, having 2 servings of fruits, 3 servings of veggies, exercising 30-45 min and a few others. Going into the challenge I am way confident that I have a lot of those things already down. It is still going to be a lot of work but there is only one of those challenges that scare me. Exercising. That is a lot of points I am going to lose, or so I thought. The moderator of the group (the cousin) has let me tweak that requirement to whatever level of activity I would consider exercising.  I can tell you right now it will change from day to day. On bad days I wont even attempt and just lose those points. Good days I might try some yoga or even take stairs when an elevator is present. Other days the in-between days (the majority of them) I will just have to count housework, waking into a store, anytime I could have used my wheelchair but felt alright enough to do without. It might sound like cheating to my fellow challenge mates but I assure you I wont be counting those points unless I feel like I’ve given it my all.

I do not have any false illusions that after the 8 weeks I will be back down to my desired size and everything will be perfect. 8 weeks is just long enough to create a good habit or two. I’m excited to challenge myself along with the other people in this group. To the other members I wish you luck, cause you are gonna need it, I intend on winning this thing! 😉

 *Throughout the course of this 8 weeks I do plan on journaling my highs and lows and sharing with you when it is over. 

Go Crazy? Don’t Mind If I Do!

I’ve met someone. It has finally happened for me. I’ve found someone who is so right for me, and I’ve been keeping them to myself for the past few months. This person listens intently to every word I say. Never interrupts me, and wouldn’t even think about judging me. They are completely empathetic to my chronic illness, and disability. They even share my love of sports…… at least to some degree. This special someone always knows just how to make me feel validated and better about any situation I may have at anytime. I’ve gotta say it is a great relationship. The only thing keeping it from perfect is I pay them. I’d like to take this opportunity to introduce you to Jennifer, my mental health specialist.

I know some people put such a negative association with Psychiatry/Psychology, but that is just plain ignorant. Everyone at some time could benefit from someone to talk to. I can assure you I am benefiting every time I see Jennifer.  There are so many issues that come with my Chiari the average person won’t and can’t appreciate what it is like unless they have experienced it themselves. I felt that being able to talk to someone who could understand me would not only help me but my family as well. Like everything I do, I did my research. I was picky, I didn’t just want anyone, I didn’t think that just anyone would be empathetic to my special circumstance. Enter Jennifer. Her bio on the internet told me she specialized in people who have become disabled, and that she is very much interested in working with such patients. It was a match made in heaven. I instantly got along with her (even if she is a byu fan), and I knew I was talking to someone who could really GET what I was going through. Just having someone there to make you feel like your feelings are important and real, no matter how foreign they seem to other people, is a huge help to my sanity.

I’ve written about  a good deal of the struggles I face each day, but for the purposes of this post I would like to shed a little light on two more. One being a physical problem, the other an emotional one.

Having a chronic illness such as Chiari can be so hard on not just your body but your mind and heart as well. My Chiari has left me with an overwhelming feeling of failure. I’ve failed to find a decent neurologist for my care. I’ve failed at being the wife I want to be. I’ve failed at being the Mother I imagined I would be. I’ve even failed at being the Utah fan I want to be. Now I know, no one else probably thinks that I have failed,but who doesn’t hold themselves up to a higher standard? Trust me, I don’t expect to be perfect, my expectations were never that high. However, I still think I have failed. Over and over. In my mind I know that I am doing the best that I can, each day but in my heart I always come up short. These and all my other inner feelings at times can be crushing.

If I were to be completely honest, Id tell you that I’m in constant pain. It never leaves. Yes there are times where it kind of fades into the background, and I don’t notice it quite so much. Some of my pain I’ve been experiencing for years and I’ve built up quite a tolerance to it, so although it hurts it doesn’t slow me down. However the  majority of time I am in a great deal of pain. All kinds of pain, joint pain, head pain, nerve pain, muscle pain, and pain in the back of my head I couldn’t even begin to describe. The severity of my agony is as diverse as the origins themselves. I can get a migraine with all the bells and whistles, (blurry vision, nausea, dizziness, etc.) that ranks a 7 on a 1-10 pain scale and the next day I might have one that feels like an 11. I do take pain medication on a daily basis, but it is only meant to take the edge off, so even then, I’m still in pain. Mark will be the first to tell you I don’t always deal with my pain well. I get really irritable and sometimes down right mean. I never intend to take out my pain on anyone else but it happens all the same.

The pain and my feelings of failure are just two examples of why I choose to get outside help dealing with my illness. It is difficult to handle everything that comes with my Chiari on my own and the assistance I get from Jennifer is just one tool I use. Before I decided to start seeing Jennifer there were things I have come to learn that help me that are just as important. Things that keep me from breaking down, or as like to put it “Freak Out”.

Reading books is one of them. As of today I have read 25 books so far this year, by the time I publish this, that number is sure to be higher. I already mentioned once that one of my goals for this year was to read 100 books. Why 100? Well why not? Reading is good for the soul.  Reading is good for the mind. Reading is just good. Reading is the most preached about skill by our educators today. For as long as I can remember, I’ve always loved to read. I’ll read pretty much anything, fiction and non fiction. (I do however discriminate against Romance novels. I don’t like them. Nothing against those of you that do, it is just not my thing.) But just exactly why do I read so much? The answer is simple, reading a good (or bad) book lets me experience things I can’t do anymore. Losing myself in a book is a great escape from all the daily stresses I have.  I also find it extremely cathartic. The reason I cry when I read an emotionally packed story is the same reason I cry at the same type of movies. I get to let all those emotions out. Sometimes a good cry is exactly what I need. I may not even realize I have emotions bottled up inside me until one of those moments.

If you know me or have read this blog before you know sports is a huge part of me and that it plays a vital part in my mental health. I wont go into all of that now because it seems like I mention it all the time.  At any rate, if you are new to this site or would like to know more about what I mean please go read my post My Addiction. It was one of my first posts and I know not everyone has gotten a chance to read that one yet, so please do. You will probably be able to see where I’m coming from sometimes when I go off on some sports topic.

So many of my other coping techniques are not original by any means but, there may be one you might not have thought about before so I will quickly highlight them anyways:

  • I like to do things with my hands. I’m not all that talented but making something always helps me feel as if I am worth something. I make baby blankets, I try to sew, and I love to cook and bake. Even cooking a meal for my family is so gratifying. Doing so gives me a sense of accomplishment that always diminishes (to some extent) those feelings of failure.
  • Never underestimate the value of a hot bath. Like I mentioned before I get a lot of aches and pains and heat feels so good on them. Also I’ve perpetually thought that soaking in a hot tub was relaxing. Fill it with bubbles and maybe light some candles, close your eyes and just let the stress melt away.
  • I adore my kids. At times those loud critters can be the cause or at least huge contributors to my migraines being as bad as they are, but they bring me so much joy. I like to just watch them sometimes, admire everything about them. Sometimes they will ask me to color or play something they know I can do, and I just cant help myself I am instantly blissful. They enjoy life to the fullest and they are my inspiration when things are bleak.
  • Taking a night off and going out is easier said then done. It has gotten so hard to plan anything these days. How do I know what I’m going to be feeling like days in advance? I make plans anyways, hoping my friends or husband will understand if I have to cancel, or change the plans. Being a stay at home Mom AND disabled have me feeling so isolated at times that going out is more important than what kind of pain I might be in the following day. When I get the chance to go out with ‘The Girls’ it bolsters my spirit automatically. That feeling of being part of a group or even society is intoxicating. It doesn’t even have to be anything special either. Going over to hang out with my sister Kami, eating a meal with my nearly sister Ashley, going to a gym meet with my friends from SLC, or even going on a date with Mark. All of those are perfect. I’m not picky I just want some adult conversation.
  • On the other hand I love having time for me. Just me. I have to be able to claim that sense of independence as much as I can. Furthermore, it is nice to have alone time, to contemplate life, meditate or even have a good cry. So whether it is attending a game by myself, going to the library to browse, or just being alone to take a breather, I enjoy these times.
  • Obviously I love to write. Putting your feelings down in writing, in a blog or in my journal, gives them significance. It also helps putting those feeling to rest sometimes. If I’m really angry at something that happened, and I write about it, the feelings subside a little. I’m probably still angry about it but I’ve gotten the majority of it out of my system and I feel better. Writing is the ultimate outlet for any type of emotion, or experience. You can keep it as private or as public as you want but you still feel lighter, and you no longer have those feeling bottled up inside.

I know I’m probably missing some here but these are the ones that I know I use. I’m not perfect by any means. I still have my moments where I lose my patience with life or I take my pain out on everyone. What I am going through is down right hard. I don’t always know what it is I am feeling, not to mention how to deal with those feelings. My whole life has turned upside down and I am just doing the best I can to keep myself from drowning in it all. Every day brings a new challenge and a new opportunity to improve.

No, YOU are a Dumpster Fire

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One of my Dad’s most famous lines is “I’m always going to be your Dad”. It is true, no matter how old I get in life I can never escape his relentless wisdom-isms.  Although annoying at times I always appreciate it. Sure there are plenty of times he is totally off base, or other times when I am too stubborn for anyone’s advise and I completely ignore him. Nevertheless what he says perpetually sticks.  “Never go on a date with a boy that honks” “Be nice to your sister” “Don’t harden your heart” “Be the first to apologize” The best peice of advise he has ever bestowed upon me and the one that always is going through my head is, “Dont sweat the small stuff” You can get so caught up in all the little things that go wrong, or all the things you have no control over. I would be remiss if I didn’t mention that I didn’t always(still don’t at times) take this advise. I am a worrier. I always have to know all the outcomes just incase. But in some instances I think it is good, not for my sleep by any means but, when the unexpected happens I am ready. Other times sweating the small stuff can keep you from enjoying life.

Have you ever had a paradigm shift? The first time I heard of paradigm shifts it came from no one other than my Dad. He made us all sit down and watch Stephen Covey and one of his 7 Habits seminars. At 14ish I rolled my eyes during the whole thing. Sure a few of his points made sense to me but the Paradigm Shift was silly. No way am I ever going to think differently than I do, especially in the kind of way Mr. Covey insisted. Well little did I know I was going to have a huge Paradigm Shift, it just wouldn’t come for a good 12 years or so. Not to say that I haven’t had one before that, for instance I went from not wanting any kids to wanting a house full. There have been many, many paradigm shifts since I was 14 but none of them compare to the one I have had recently, and it was due in part to my Dad’s famous advise…..  Don’t Sweat the Small Stuff. 

For those of you readers that don’t already know, this past basketball season at the University of Utah wasn’t one of our best. Whoops, I apologize, for breaking my own-No Sugar Coating- rule. In all honesty it was one of our worst. We didn’t win a single away game and we suffered our worst loss in the history of Ute Basketball, losing by 46 points. It was bad. We have struggled in the past few years, but this season was worse. It also was the best basketball season I have ever had. I have season tickets and I made it to every game I could. (2 games I was sick and 1 was my son’s birthday.)  This season I put nearly 1,500 miles on my vehicle, spent at least 40 hours in traffic commuting to the Huntsman Center and back, and took around 24 pain pills just to watch us most likely lose. I loved every second of it. Every loss, was a great time, our few wins were like winning the lottery. People thought I was crazy. My Dad, still cant grasp it. What is the point? How can you possibly have fun watching your team lose week after week? How can you leave your family all those times, spend forever in traffic, kill  yourself in the process without anything to show for it? Well I will answer that for y’all, I will share my secret with all you grumbling Ute fans and the rest of you. Here it is: I don’t Sweat the Small Stuff. 

As a sports fanatic I can tell you sometimes nothing hurts worse than a loss by your favorite team, and nothing feels better than a win. I’ve witnessed plenty of both, and that statement is so true. But I can honestly say winning and losing is definately Small Stuff .  I give you the Sugar Bowl for an example. In 2009 when the Utes went to the Sugar Bowl I went too. I went all the way to New Orleans alone, no family, no best friend, just me and a bunch of Ute fans I sorta knew. It was an experience I will cherish forever and I even made some life time friends on that trip. However, when Utah smacked Alabama in the mouth and won the game handily I was in tears. Here was the greatest victory I had every witnessed in person and my Dad wasn’t with me. Mark wasn’t with me. I was alone. I will never forget the conflict of emotions I felt that night. I was euphoric passing all those bama fans on the way out. My team  just showed the world what we are made of and I couldn’t have been prouder. But just as happy as I was, I was just as disappointed. The entire undefeated season I was with my Dad, or at least near him up until that night and without him it just wasn’t complete. I could tell you countless stories about wins and loses to prove my point but trust me whether we win or lose is Small Stuff. 

I am somewhat opposite of most women at sporting events. I do not go to socialize. Sure I love having people to celebrate with and I dont necessarily want to sit with the enemy but I’m there to watch the game and that is it. No other sport shows this better than Basketball. Now I may sound like I am contradicting myself here but Basketball is night and day different than football to me. I go to basketball games almost always by myself, and that is the way I like it. Some of my friends don’t see how I can do it, drive all that way, and sit all by myself and be completely content. I don’t want you to get the wrong idea here, I am not exactly by myself, there are friends of mine that attend these games as well that sit near me but I am  in no way WITH them. Although, I am very much comfortable doing things by myself, and I hate even the idea of socializing at a sporting event, this is not why I attend Basketball games by myself. I do it because I can.

Along with a great deal of Chiarians, I am very limited in what I can do, and it seems like that list gets smaller and smaller on a daily basis. Feels like even little things like showering, or taking a trip to the library are huge tasks. And every time I complete a task like that, no matter how it makes me feel later, I get such a enormous sense of accomplishment. I’m so proud of myself, I did it. It seems silly sometimes especially when it is for showering but my life has shifted. Going to a Basketball game takes a lot. (If I was talking spoons, I would say it would take my entire days worth of spoons and most likely half of the next days as well.) First you have showering and getting ready, and remembering to grab my Section F wrist band and ID (I’m in a special section where you need these) Then comes the drive. It is around 60 miles with 40 of those being in construction. Instead of parking at the actual parking lot they have for Basketball games, I park at the football stadium and ride TRAX (Light rail system) up to the Huntsman Center because it is a shorter distance for me to walk. That walk isn’t easy either, Trax drops me off right there at the arena but it is set up on top of a hill that I have to walk up. The stairs are probably the worst part of my game day experience. I sit right behind the basket down pretty low but that means I have to go up and down a bunch of stairs. The actual game I am standing, clapping and yelling. Obviously if I didn’t want to I wouldn’t have to stand but as some of my friends know, you cant make me sit down during a game. After I’m all spent from cheering my team on I still have to make the long drive home, Which is double the ride up due to construction crews shutting down parts of the freeway. Ive already talked about why I put my body through this for a game in previous posts, so I wont go into that again. But here is something I havent said before, every game, when I go through all this, all by myself without anyone else s help it makes me feel like I can do anything. It makes me feel like I’m not worthless, I can be independent and just not so broken.

So all season when all of the fans complained about everything, and could not be pleased even when we did win, I was the opposite. Yes I was disapointed that we were not playing well but it wasn’t the end of the world like it was for some. For weeks I was genuianlly confused on why people couldn’t see things like I did. I wanted to scream at them, “WHAT IS WRONG WITH ALL OF YOU!”  I even got some critizisim on twitter because I was not effected by the bad season. I was having a great time and I didn’t try to hide it. I couln’t stand these so called fans turning on thier own team. I had had a paradigm shift so big I cant even remember thinking the way I used to. Here I was enjoying the simple act of going to the games. How I feel watching a sporting event. I soaked it up. I even got to the games extra early to watch warm ups. I was so grateful that I could even do this by myself still, that I had the money to have season tickets. I was thinking I am so fortunate to have a partner in life that puts up with me being gone all those nights. I was thinking how lucky I am to be able to sit exactly where I like to watch basketball. How we hosted some great teams and I got to watch them play. How we had some extraordinary men on our team. I was thinking how I am the luckiest girl in the world. At the same time I kept thinking why is every one  else Sweating the Small Stuff? No one could get over these little things. Our best scorer gets kicked off the team for violating team rules. Everyone was concerned about what it was going to do for the rest of the season even though it was far from being salvaged. No one wanted to think that this was done for the good of the program, and even for the kid himself. Some wouldn’t go to the games because they didn’t want to watch us play that poorly. They never thought that these kids have been working their asses off everyday and they deserve our support no matter what. Every day I heard “Utah Basketball is a Dumpster Fire” well, you are entitled to your opinion but so am I.

Refresher Course

I sort of got out of the habit of writing regularly, and I hate it. Fortunately, I was invited to take part in a Carnival blog monthly therefore, I am forced to get back to writing.  For those of you that have visited my blog before this blog post is definitely a refresher, but for those that are new I would like to say Welcome! & here is a bit about me and why I write this blog:

I found out I had  Arnold Chiari 1 Malformation in October of 2008 when I was 25 years old. This was after an entire year of having a daily, that is right I said daily, migraine. It just started one day, and never left. It took a year to diagnose me because the thing about Chiari is no one knows about it. After my then neurologist diagnosed me she wasn’t all that concerned, nor convinced I needed surgery. Me being the stubborn, assertive person that I am, I went and saw a surgeon anyways. He agreed that I didn’t need immediate surgery however, it was my body and my head so it was my choice. I underwent  my decompression surgery in March of 2009. During the surgery my surgeon quickly discovered that my Chiari was a lot worse than the MRI’s showed. He was very glad I opted for the decompression when I did. I felt great for the first 3 months then all my symptoms returned. These symptoms include the migraines, full left sided numbness and a list that is a mile long. Id have to say other than my left side shutting down anytime I do anything physical, my most bizarre symptom is that I cant lay flat. I’m not talking flat on my back I can not lay down without my head being propped up at an incline. I get way too much pressure in my head, and it is hard to breathe if not propped up. The main reason I started this blog was to let my loved ones and friends know what it is like for me on a daily basis. They have a hard time grasping it sometimes, and hear “You just don’t understand” all the time.  I’m permanently disabled from my Chiari and I want people to know that every case is different. Just because you hear about someone who had the surgery and is now able to do things like everyone else does not mean that is how it is for me. I also want people to know that my symptoms may change from day to day. I want people to know that it is hard feeling left out, and not being able to be the person you used to be. I want people to know that I am self conscious about the new me, now that I have been diagnosed. It seems like every Chiari patient responds to different medications. It has taken me and my doctors years to figure out what just wont work for my pain ect. . I’ve been on so many different drugs I cant even compile a list. I’ve also tried many things on my own to alleviate my symptoms. Heat and Ice are like my best friends. When I get a really bad migraine I always put ice on my head 1st then take my pain meds. I find myself taking hot baths at least 3 times a week to just relax my muscles. Just recently my Dad has given me some essential oils to try, I haven’t been doing this long so I will have to let you know how it works when I form an opinion.   Chiari Sucks! That is just the way it is. Dealing with having it can be down right depressing, but there are things I do to help me keep my spirits up. I attend as many University of Utah events as I possibly can because, they make me feel alive and complete. There are at times that going to a game is the only time I’m happy.

I know that is just a very short introduction to my blog, and who I am. Please feel free to go and read the rest of my posts for a more in depth view of what it is like being a Chiarian. And as always thanks for reading, and I promise I will be back really soon.

New Year! New You?

Lets face it 2011 wasn’t the best year. My family had to overcome some serious hurdles this past year. Looking back, I still don’t know how we made it. Okay so that isn’t entirely true, we had more than a few people looking out for us, helping us get through. But still…… I mean come on how much can 1 little family go through in one year? We had TWO cars break down, countless health issues (and not only with me), and even our Utes seemed to take a hit this year. Enough looking back….. Sunday marks a new year, fresh start, and everything will be different. Right? I mean that is the whole concept of celebrating New Years, lets say good-bye to last year and welcome in the next with the highest of hopes. I wish it was that simple but it really isn’t.  The truth of the matter is when I wake up on Sunday morning nothing will have changed except my calendar. The medical concerns we were facing will still be waiting for us. Maybe that is why Mark thinks New Years Resolutions are silly. He has not once in the time we have been together made a resolution.  He says “I work on what I want to everyday, I don’t need a new year to do it.” Okay so he has a point but does anyone that has that attitude actually do anything throughout the year to better themselves?

I’m the opposite of Mark. I love New Years Resolutions. I like the idea of being able to always start over no matter what you have done, or been through. Yup you are still gonna have some of the same things following you, but to quote Taylor Swift’s Innocent -“Today is never too late to be brand new.” So sure it doesn’t have to be at the beginning of the year, you never do have to wait to better yourself, Mark is right.   However, I think that the goals part of the New Years Resolutions is only half of it. The other half, may just be why I love New Years so much. It is a time to look back one more time, and reflect. What went right this year? What could have I done better? Then, What can I do this year to try to have the very best year? We all run into things we cant control, but there is so much we can. How we respond, what steps do we take to protect ourselves from the unknown, and how we are going to treat each other and ourselves? So for the past week I have been doing this and I have come up with a few of my resolutions I would like to share. Keep in mind I have more than these, that quite frankly aren’t anyone’s business.

1. Like with most people the top of my list is Lose weight. No I don’t plan on going on some fad diet nor am I going to start cutting out all the foods that I love. Yes I am going to work on eating more of the foods Dr. Oro wants me to but, I already give up so much in my life, if I want a doughnut I’m gonna have one! I think it is silly when people start out the new year going on some diet that there is no way they could stick to. My plan to attain this goal is to simply watch (a little closer) what I am eating and slim down my portion sizes. It is hard for someone like me, with so many restrictions to start an exercise program but I can look for somewhere that will teach me a very light yoga routine, I can look for a place and try some water aerobics. These are two exercises that my doctors have suggested as very good alternatives for me since there is no way I will be using my treadmill anytime soon.

2. In 2011 I read a total of 79 books, my goal was 100. So again this year my goal is to Read 100 Books. This includes fiction and non. If you have any recommends please pass them on, just keep in mind I don’t particularly like Romance or fantasy. Also I would love for you to join me on Good Reads and watch my progress.

3. This next one, as with my last one, is a continuation of the success I have had in 2011. Don’t let other people’s bad attitudes affect me. There are friends of mine that are continually “sweating the small stuff” as my Dad would say. I do plan on blogging about this one in detail soon so I wont spoil it, but lets just say for resolution purposes, that I am going to continue on enjoying my life regardless of your opinion.

4. One I know I need a lot of work on is Writing More. Wow, how long has it been since I have posted? I don’t even want to look at the date from my last entry, it has been that long. Now I’m not going to promise I will get immediately back to posting once a week, nor am  I saying I will always doing my ‘writing more’ here. My goal is to write more often, whether that be in my journal, here in my blog or somewhere else. I love the way writing makes me feel, and I miss it horribly when I am not doing it on a regular basis.

5. The last one I care to share with y’all is to Cherish Every Waking Moment. I know that is kind of lofty goal but, it is something that every day I can work on. There is so much I have, so many blessings, that far too often I take for granted. This doesn’t mean I plan on being one of those annoying “Only Positive thinking” type, you know the type I’m talking about…… That just will never be me. I would like to remember everyday the things I do have, along with the things I don’t, just so that I can get the most out of my life. Loved ones can be taken in an instant, our lives can turn completely upside down without warning so might as well enjoy what you have while you can.

Like I said I have more that I am keeping private, and I probably will add more as 2012 goes on, and if you would like to share yours please do so. The important thing to remember is Today is Never too Late to Be Brand New.

Warning May Cause Death

I never noticed it before I watched a commercial for some sort of bladder control medication with my younger brother Dillon, when he started making fun of the side effects. He pointed out that almost every single one of the complications of taking the said medication they noted on the commercial was worse than having the problem you were taking it for in the first place. From that day any time I see a pharmaceutical advertisement I wait for it, and every time they say it I smile and think  of Dillon. “Warning May Cause Death” Now I know they have to put those disclaimers on everything these days. I laughed when I saw a huge sign at the gas station the other day that says that chewing tobacco May cause mouth cancer and/or other types of cancer. Seriously?! I get that the drug companies have to cover themselves in case something goes wrong, in case you, the consumer, do not take it as directed, or who knows you may just be allergic and not know it. But what happens when drug companies rush a product out before its ready? Or they don’t know exactly what it is going to do to those that are taking it. There are so many drugs that we know of now that those are the case. That maybe in our parents generation they gave and there were horrible side effects that we don’t know about until now. How about the anti depressants that they used to give to adolescents by the bucketful, but as a side effect gave our teens suicidal thoughts. Even ones that weren’t suicidal in the first place. What I guess I’m saying, is that I am glad for the over the top warnings that the FDA requires these days. Also the funny thing or not so funny if your like me and take a bunch of prescriptions all the time, is that Dillon wasn’t that far off in his assessment.

For instance I used to take an anti depressant called Amitriptylin for a preventative migraine treatment. They call this an “Off Brand” use of the drug. I took a very small dose, I don’t think it’s even large enough to treat depression if that was what they were using if for. I have been on it twice. The first time was by its self. The most recent time I was adding it to my other medications. Sure it seemed to help the 2nd time around but it ended up not being worth taking. Here is why, the following is the known side effects for Amitriptylin:                                           Blurred vision; change in sexual desire or ability; constipation; diarrhea; dizziness; drowsiness; dry mouth; headache; loss of appetite; nausea; tiredness; trouble sleeping; weakness. Seek medical attention right away if any of these SEVERE side effects occur when using Amitriptyline: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); chest pain; confusion; dark urine; delusions; difficulty speaking or swallowing; fainting; fast or irregular heartbeat; fever, chills, or sore throat; hallucinations; new or worsening agitation, anxiety, panic attacks, aggressiveness, impulsiveness, irritability, hostility, exaggerated feeling of well-being, restlessness, or inability to sit still; numbness or tingling in an arm or leg; one-sided weakness; seizures; severe or persistent dizziness or headache; severe or persistent trouble sleeping; slurred speech; suicidal thoughts or actions; tremor; trouble urinating; uncontrolled muscle movements (eg, of face, tongue, arms, legs); unusual bleeding or bruising; unusual or severe mental or mood changes; vision problems; yellowing of the skin or eyes.

This is what they put on the little sheet that comes with my prescription each time. They want me to take this medication that might help me? That causes constipation and diarrhea at the same time?! Okay, I know I get it. Everyone reacts different. You might get diarrhea, the dude next to you would get constipated. I know what your thinking….”gross, no one wants to read about this, this is really TMI” But what did I tell you from the beginning, if nothing else I was going to be honest. We humans are adaptable and our bodies are resilient. After awhile we become accustom to the poisons we put into our selves and some of those not so pleasant things to talk about simply go away. Trust me its a great day when your body gets used to the medications that might do those kinds of things especially when you take a narcotic like Hydrocodone that is notorious for that. The problem is some side effects never go away, that is why they are called side effects I guess. You could be taking the drug for years and years and still get the same nagging symptom from popping your daily meds. For instance I still get itchy when I have to take a double dose of my pain pills. Oh and boy do they give me dry mouth, I don’t think I could add up the amount of water I drink daily just because my mouth is so dry. The thing about my pain medication is the benefits of taking the drug totally out weigh the cons or even the risks. I have to be careful, monitor myself when I’m taking them, make sure not to mix them with specific medications and know exactly when to take them and when not to. However, it is a cut and dry case of “it is worth it”, no question.

Sometimes, like with an anti-seizure medication I take called Topamax, the jury is still deliberating on if it is worth it or not. I use Topamax for another preventative for my migraines. I’ve been on it for a good amount of time now and of all the preventives I have tried it’s the only one I know is working. The problem with Topamax is it makes you dumb, it is even nicknamed “stupimax” or “dopamax”. I can’t place words, add or even remember what happened 10 min ago. It is a proven side effect and honestly is getting more than I can take some days.  One of the dilemmas with taking a drug that does this to you is you never know what is a side effect and what is you. See, many people with Chiari experience those exact same set backs and it is just the illness. It can be quite frustrating when you can not tell if your symptoms are getting worse or if it’s perfectly normal because it is just the drug messing with you. Doctors dismiss my concentration problems all the time because they see I’m taking Topamax, it has to be the medication they say. Let me tell you, losing your brain so to speak can be/get very scary. Id like to share one of my most embarrassing examples of this.

It is a typical day, Mark is at work and I am getting out of the shower and grabbing some clothes. I open up my underwear drawer and right on top are these sexy, lacy, black panties laying on top…… I don’t recognise them. They are not mine but there they are, on the very top of all my other stuff. I pick them up to get a better look, check out the tag maybe get a clue on whom they belong to, perhaps they are my sisters and I accidentally took them home. They are not my sister’s size, and they are not a brand I have ever bought before. Now I have a sick feeling in the pit of my stomach. I had been out of the house the night before, did Mark have some girl over? Oh this can not be happening, my husband has cheated on me and left the evidence right in my face, rubbing my nose in it. There has to be some other explanation. I think and think, examining that little piece of lace for a good 20 min and nothing is coming, they are not my panties and I am at a loss to what to do.  I lay them out on my bed and decide I will figure out something to say by the time Mark calls me on his lunch. About an hour after mundane tasks I start getting the sense that I am missing something huge here. Could I have bought them? Have I even been shopping lately? I start retracing all my activity for the past week, then two weeks back. I start looking for clues in my purse. Sure enough I have found a receipt for a gift I purchased nearly 3 weeks prior that triggers something in my mind. It only takes the rest of the day for it to come back to me and I feel like a complete idiot. Those sexy panties are totally mine and I bought them with a few others but had thrown them in the laundry before I wore them. Mark had just put them, all clean and ready to wear, while I was out. I couldn’t believe the mistake I had made, and was so grateful I hadn’t accused my husband of the worst.

——–Okay you can all laugh at my expense now———                                       But honestly sometimes it gets worse than that. There are gaping holes in my thought process some days. I try to remember something and it’s just blank. I wonder how much is the medication and what is the Chiari. If I could get by without being on the Topamax, would it help my mind? It is something to consider, after-all if you don’t have your body or your mind what do you have?

Is Everyone Still Alive?

WOW. Okay so September was a hellatious month. It was crazy busy and filled with so many misfortunes and heartbreaks it is amazing I made it to October at all. So I sincerely apologize for being away for so long, I never have intended to go that long without posting and do not in the future. I promise I will catch you all up on the important stuff that has happened to me  over the past month but I know you are all dying to know about the big one. The Doctor appointment at The Chiari Care Center with Dr. Oro.

Now getting to this appointment in its self was extremely stressful. The Chiari Care Center is located just outside of Denver, CO. It’s not a long drive from where I live. It took us about 9 hours taking I-80 (I-70 is quicker but that is a story for another time) Totally worth the drive for a doctor that knows what he is doing. They had me scheduled for 3 days worth of appointments, a Wednesday thru Friday. This meant we needed to be there in Colorado by Tuesday night. Although we chose to go with a different hotel than what was offered I must mention that The Chiari Care Center partners with some local hotels to give discounted rates, some up to half off, to help their out of town patients. Just 2 days before we are to leave and we are scrambling to find a suitable dog sitter, we have not a single penny left to our name after you budget gas so we are looking at not eating besides our complimentary breakfast. Furthermore, we are down to just my jeep, with me terrified it wont make the trip (again story for another time).  Luckily we must have had someone watching over us because things ending up working out and we made it to Denver safe, sound, money to spare and my dog totally taken care of. Granted it was 2 am by the time we got to our hotel and I ended up not sleeping a wink but how could I? I was about to meet a REAL doctor.

WEDNESDAY:                                                                                                              My first appointment was with Dr. Oro himself. First thing I noticed though was when they gave me their paper work they wanted me to fill out. They had this little survey about symptoms and it was like a total surreal moment. Every single thing they had on there either pertained to me or I could understand why they would put it on there. It was like “Wow, they know what they are doing don’t they” from the very first second I walked in the office. I get in the room with one of the assistants to go over history and the like and same thing, every question she asks me is the right question. Some are ones I wouldn’t think to have asked but they all make sense. After reviewing the massive amounts of MRI films I had brought with me Dr. Oro finally came in, and here was this man, that was different from all the others, he is gonna fix me. Unfortunately he wasn’t much different during that first appointment than most neurologists. Other than the questions he asked were much more intelligent and he definitely knew what he was talking about he was still a neurologist. They are a bit off. Don’t get me wrong, he was super nice and never once did I get the impression he was not hearing me or anything but it was an everyday appointment. He did the normal neurological exam then told me it had been nearly a year since my last scans so we were going to set those up for the following day.

Thursday:                                                                                                                    I had a CT and an MRI set up at 6:30 am then my appointment back at the CCC with one of Dr. Oro’s nurses at 9. It was an early morning, and come to find out we could have slept in a little. We get to the place we needed to be for my scans a little early because it’s always good to be early to a medical appointment, the building is all dark but its one of those ones that house lots of different companies so we decide to go in. We find the suite we are looking for right away but the door is locked. On closer inspection they don’t even open til 7! So we get to wait around for a half hour til they get there. Why make an appointment if you aren’t even open?! We were a little mad until they explained it was just a miscommunication and they get me right in to do my scans so I can be on time to make my appointment. My appointment was with Kim and it was an overall health type appointment. It was to examine things from what I’m eating to how I am sleeping see if there is something I can do to improve any of it or all of it. Kim was wonderful, she was understanding, non judgmental about any habits or anything I may not do. She even talked tailgating with me. Her biggest concerns were that I wasn’t eating enough and my sleep. Now I assure you I look like I eat enough but I have thought that myself some days. But we are on it now at least I am improving. She gave me a list of vitamins she would like me to start to combat fatigue, neurological inflammation and just plain good for you. We talked for so long about everything I had questions about and she gave me so much literature on so many things that I didn’t even think about before. Was a great appointment. After that it was only like 10:30 so Mark and I went to the Denver Museum of Nature and Science. That place took my breath away at times. They didn’t charge hardly anything, they gave us a wheelchair for free (we forgot ours somehow), and everything is hands on. I will be taking my kids there I don’t care if it is 9 hours away, it is that nice.

Friday:                                                                                                                         This was it. It was diagnosis time. Well I guess we already knew my diagnosis I had Chiari but to hear it from someone like Dr. Oro to validate my pain and struggles is all I really wanted and the time for that had come. He had us come into a meeting room instead of an exam room where he had my MRI and CT scans up on the computer. This is the first time I have ever seen the back of my head so clearly so I am a little freaked out, other Chiarians you probably have seen yours so you know what I am talking about. If I knew how to get the image of the disk and post it I would so my description will have to do (If you know how to do this please email me) My C1 is intact but after that there is just nothing there. Most of the back of my skull is missing. Gone. It’s a giant circle of black against the white of my skull on the film. As I am sitting here looking at this I am thinking “well no wonder I can’t go on a roller coaster or a speed boat or…….” But all this was normal, well normal for me anyways and normal for anyone that has had the surgery I have had. Everything looked great except one tiny thing that I will get to in a bit. Time for the great Doc’s recommendations. First thing he suggested was I probably have Occipital Neuralgia. This made total sense and I wonder why no one never brought it up before. There are some good options to treat it. The next thing he brought up was the Neurological inflammation. He said it can be triggered by foods and such. He suggested the Paleo diet that he is currently on. Another thing is that my spinal pressure is probably off. It could be causing my inability to lay flat. He ordered a special LP to check that. I will be getting that done here by doctors locally. The last thing was the little tiny thing that is wrong with my MRI its been wrong for a while. I don’t know what it is called but the surgery is way invasive and there is no guarantee it is even causing my problems. Although Dr. Oro isn’t just gonna write it off as a I’m not gonna touch it cause the surgery sucks case he wants to do more research and said there is a conference that he was going to that deals with my exact problem.

All in all I was very impressed with how the entire office worked and Dr. Oro obviously knew his Chiari. I felt well taken care of, listened to, validated and most importantly I didn’t feel like a pay check. He never promised any of his ideas were going to “fix” me nor did he claim to know that any of them were for sure what was causing the problems. He was up front and honest with me, a little quirky but head and shoulders over any other neurologist I’ve visited. He gave me options, I now have some hope, hope I didn’t have before this trip. And Hope is a Powerful Thing.

 

Can You Smell That?


Can you? The smell of grills being lit, hundreds of tailgate foods just waiting to be consumed. Can you feel that crispness in the air? It may still be officially summer but it’s there that crisp feeling if you just pay attention. It is here, that most wonderful time of the year. Football season has officially kicked off. I have waited months for this, and as always it was well worth the wait. I had jotted down some thoughts and feelings at different phases of the game this week that I plan on sharing with you but first I need to take care of something a little more serious. Ron Tongaonevai a Defensive Lineman for the University of Utah lost his beautiful wife to a car accident just after the Utes beat Montana State. I would like to express my deep condolences to Ron and his family, you are in my prayers Ron and may Janelle rest in peace.

Before the game: (From my personal journal Tuesday Aug. 30th)

Normally 2 days before the University of Utah kicks off their first game of the season I am bouncing off the walls excited. This year is no different, I am having trouble settling down and sleeping and when I do I dream about the game. I can’t concentrate on anything because there is a game this week. But for the first time in my life I feel apprehensive about a football game. Every time someone mentions Thursday’s game and I find myself getting all fired up and crazy excited, the other cleat drops. Up creeps the fear. You heard it here first, I Misty obsessed with all things Utes football am afraid of a lil football game.

Day of game:

Things have changed a little bit because of my rapid decline in mobility. We used to have a really cool parking spot that was a block away but that is now too far for me to walk. We are now planning on using ADA parking the entire season. The University of Utah’s parking services went over a bunch of options for me and the very best one was for me to park in the actual stadium lot but they warned me I do have to get there early because they only allow something like 50 ADA permits in and they are first come first serve. Fair enough. So we leave to the game way early. I even pulled Scott out of school 45 min early so we could beat traffic and get us a spot. About an hour before we leave, 4 hours before kick off I start feeling ill. Like I’m going to pass out, or throw up or both. I am getting that fear again. I tell Mark I am afraid we wont get a spot, that I wont make it through the game. I can’t begin to tell you how scared I was that I was going to fail at one more thing, my thing at that. Although I can give you some perspective, I let Mark drive up to the stadium and didn’t even complain about his driving once. I clearly wasn’t myself. We got up there in pretty good time considering I wasn’t driving, and there is tons of construction. When we pulled up to the stadium lot we were waved right in, no questions asked, and we got a very good spot. I didn’t bring my wheelchair, I’m not getting into that one right now. Same ol’ fight, different day. But this left me with no choice I had to head into the stadium nearly 2 hours prior to kick off because I couldn’t walk around to the tailgate lot or anywhere else, but I didn’t mind I was in my favorite place in the world. There was a little bit of a hiccup using the elevator for big donors and ADA fans. Although that was not on the University, more like one particular employee that is probably not used to seeing a 20 something couple needing to use that gate.

The Game:  

This was not an intense game. We had it won early and we stopped scoring early. So it is hard to tell exactly how bad I really was. I’ve already explained before that when I’m at a game adrenaline hits me and I’m able to stand, cheer, and do the normal game time activities. Thursday’s game was no different, except for one aspect. I was still in pain. Last season I normally didn’t feel much pain til the end of the game, Thursday I was in pain the whole time. Not a headache but nerve pain on my left side where I go numb. It wouldn’t go away. I’m pretty sure this was a good thing. It helped me remember that I needed to sit down more often than other people. Yes I stand at the football games, normally I can’t but if you can’t understand why I do it at the games you don’t have a passion in your life. Besides the constant pain I was feeling this week, the stairs are now almost impossible. I don’t have that many to go up and down and I am a woman who does not get up to ‘go’ unless it is half time but wow those stairs must have multiplied in the past summer. When I couldn’t lean on the rail to help hold me up I was near tears. I need something on my right side to help stabilize me because my left side is already shut down by half time. The walk back through hell was still the same, at least this time it was shortened. By the end of the game all adrenaline has left and my left side isn’t working at all. Try leaving a stadium of 45,000 + fans while you are literally dragging your left  side. I don’t even care if people stare at me at that point I just want to get to my jeep.


Post game:

As always its worth it. Every ache and pain, every minute that I have to sacrifice to get up there to get a close parking spot. It all doesn’t matter when I see those boys run out on the field. I didn’t get out of bed til 3pm Friday and my nerve pain hasn’t went away at all since it started Thursday, but I would do it all again. Well I mean I am doing it all again.  USC is on Saturday and my dad, my brother Dillon and I are making the trip to LA to cheer on our Utes as they play in their very first Pac 12 game, I wouldn’t miss it for the world. Win or lose. Pain or no pain. This is what I would rather die than give up. If you don’t have something that you feel that way about I suggest you go find it.