Life is a balancing act.  Everyone has to balance their time, money, energy, relationships, and goals.  Everyone's balance looks different depending on what is important to them.   But inherent in the definition of balance is the idea of having a choice of how to balance those resources, meaning that at the end of each day, no matter how one has chosen to spend their resources, there are some left over.

My life with a chronic illness is not a balancing act, it is a puzzle.  It is a puzzle, because I have very limited resources and have to figure out how they fit together each day, in order to get to the end of the day.  There are often very few combination of pieces to get me to the end of the day.  But to make things a little bit harder, the pieces are often damaged.   

My energy pieces are all worn and bent from not being able to eat, chronic fatigue and frequent migraines.  I hoard these pieces, knowing that there is no way to get more of them.   Each day when I look at everything I have to get done, I know that there is absolutely no way that my energy pieces are going to make it to the end of the day.  But somehow I make it through each day.

On the weekends, I will sometimes choose to re-arrange my puzzle pieces to try to be normal and have fun with friends.   What people don't often see, is that I come back, hook up my TPN, and sleep 12 hours and then spend the next day in bed doing homework.  People see a very limited portion of my puzzle and make assumptions about how my pieces fit together.  

To be honest, this is both hurtful and highly frustrating for those of us living with chronic illnesses, because we do our very best to live lives that appear normal, but people sometimes treat us like if we do no spend all day in bed crying and thinking "woa of me" then we aren't actually that sick.

I don't always make my pieces fit, but each and every day, is a struggle to make life work.   I know that most people, see very little of my puzzle on a daily basis and that is on purpose, so I appear "normal" but if you were to take the time to look deeper, you would realize the struggle of living a not so normal life.

Do you ever just feel like you can't catch a break with your health?  That one thing after another goes wrong with your body and there is nothing you can do to stop it?  Well that is how I feel right now, and I don't like it one bit.  To be truthful, its depressing and it feels a little hopeless.
Today I found out that I once again have mononucleosis or mono for short.  I say I have it once again, because this is the third time I have had to experience an active form of this virus.   So on top of feeling crappy with my Crohns, I have mono.   The neurologist now hypothesizes that the mono is what is causing my headaches and vision changes, and it is possible that it is also causing some of my fatigue and my fevers.   Maybe it is a good thing that we have possible answers to my symptoms, but right now, to me, it feels like I just can't catch a break.
In order to stop myself from throwing a pity party, I am trying to look at things in a positive light.  I am trying to be thankful for the positive things in my life.  Like the fact that there is nothing seriously wrong with my brain, that is a major one...I am grateful, I am not currently on a biological medicine that I would have to stop because of the mono.    I am agrateful that we caught the mono and now know the causes on my headaches.   Finally, I am grateful for great doctors who took the time to figure out what is causing my headaches.
So even though these things really don't make being sick, again, any better, they do help me put things into perspective a little.   Yes this situation sucks, but it could be worse.   Today I try to be grateful for the things I do have in my life, while trying to conquer the mono that is sapping my energy in my not so normal life.

So as some of you know, for the past 4 weeks or so I have been experiences headaches and vision problems.  I went to the ER two weeks ago to have an MRV, which is different from an MRI, done of my brain and we didn't find anything.  So the next week I saw an ophthalmologist who checked out my eyes, and everything was an least anatomically good with my eyes.  This past week I saw a neurologist.  Well actually I saw two neurologists, not sure why, but I saw one and then the other. They have a few ideas of what may be causing my headaches, but are not sure yet.   
In the mean time, they put me on two medications.  One I am supposed to take two times a day, and the other I am supposed to take if the headaches get too bad.  So I am going to start off by saying, I do not like my new medications.  I struggle on a regular basis of being super duper tired, this medication is ridiculous!  I can barely keep my eyes open.  I mean come on now, I am getting like 11 hours of sleep a night, I should at least me able to make it through the day without falling asleep....
On top of that, this medicine gives you a wicked appetite, which makes not being able to eat like 4 billion times more difficult.  I was already struggling with not eating, and now it's like impossible, It's worse that prednisone, which is saying A lot!   
So now I am sitting here wondering, Is it worse to have headaches and vision problems, or is to worse to be ridiculously tired and hungry all the time.  I really think the side effects are worse than the headaches, because I don't think I can make it through class tomorrow if I am still this tired, which defeats the purpose of trying to fix the headaches.  Why do medicines have to have so many side effects, it makes me feel I have to pick the lesser of two evils.  So if you see me tomorrow, I will probably look like a zombie as I try to figure out my new medication in my not so normal life.

I haven't been writing much lately because I don't really have anything to write.   I've been on TPN for almost 3 weeks and haven't seen any significant improvements.  In fact in some ways I seem to be getting worse.  
I have to get at least 10 hours of sleep each night, or I feel absolutely awful.  Most nights I average 12 hours or more, which is not normal, especially every day.  
On top of needing obnoxious amounts of sleep, my stomach has not been feeling well either.  I still get nauseous and distended even though I'm not eating, and will get hard areas in my abdomen that are tender to the touch.  Overall my instincts are telling me that the inflammation in my small bowel is getting worse.
To top all of this off, I still have 8-10 urgent bowel movements a day, which is incredible considering I am not really eating.... It's not enough to make my bum hurt, but it is definitely enough to be irritating.  
So with all of these symptoms going on despite my general abstinence from food, It is getting harder and harder to not eat.   Everything is centered around food, and my resolve to not eat diminishes day by day as I don't get better.  Why would I keep not eating food, if it isn't helping?  But I am unwilling to give up on this treatment and genuinely feel that if I were to start eating again my symptoms would be almost unbearable, so I continue to not eat.   
But my lack of food and lack of improvement are leading to glum thoughts as we approach Christmas, and I am praying for a miracle in my not so normal life.

Real.  I am gong to be real with you, right now in this instance.  I am going to tell you what it is like to live with Crohns disease and it's not going to be pleasant, in fact it may even make you uncomfortable, but before you judge me for telling you these things, realize how many people live with these symptoms, and live with this type of life everyday.  
By sharing this, I want you to understand what is really truly going on in my life and the lives of others with IBD.  I want you to read about what goes on in my life so you can better understand.  So please make an effort to understand what I am trying to tell you and together we can break the stigmas associated with IBD, because according to these stigmas, I shouldn't share my day with you.
I wake up every morning and barely can get out of bed because even though I'm exhausted, I don't sleep well and the sleep I get isn't rejuvenating.  First stop is the bathroom where I sit on the toilet for around 10 minutes while my bowels empty the liquid stool stored there overnight.  But they only empty if I'm lucky.  Because sometimes I wake up and food has become stuck, so every time I move I am in pain.  I take a clear ensure and a water to my first class, hoping that the nutrition will be absorbed and not pass through my intestines too quickly.  My my second class I have to go to the bathroom again, but if I start going to the bathroom then I'll have to go again and again, so I hold it.   The longer I hold it the more pain I am in, and my butt begins to hurt and my abdomen begins to cramp, but I prefer cramps to judgmental looks I receive from others from my frequent trips to the bathroom.  After my second class I race back to my room so I can go to the bathroom and spend another 10 minutes on the toilet.  Its only the second time I've gone for the day, but my butt is already raw, "can the day just be over already?"  The homehealth nurse comes to draw blood during my lunch and I sip on water and have another ensure, "don't want to rock the boat before my last class."  After she leaves I rush to the bathroom again to empty my bowels, but on the way out of the room I grab my butt wipes I keep in my purse, "hopefully they will stop the burning."   During my last class my stomach lurches and I rush out of the class room, I pull a nausea pill from my purse as I pass stoole yet another time, "this is really getting old."
Back in class I pray I don't have to go again before class is over, and I barely make it out of class before I have to go again, my butt is completely raw and very painful at this point.   I curl up on my bed and grab my computer.  I have decide what medicine to try next: tacrolimus or TPN, so I begin searching on google.   I snack on yogurt and sip on water and soon have to rush to the bathroom again.  I can hear my intestines moving things alone and although my butt hurts immensely, I am just glad things are moving, because if they don't move through, I have to stop eating till they do.   Dinner rolls around and I order a cheese quesadilla, I am not sure the chicken will be digested enough to pass through, so I stick with a couple bites of cheese, but I feel my stomach moving so I wonder how much time I'll have before I have to go the bathroom again.  As I walk into my room, I have to go again, I've lost count at this point, but I know it's going to hurt.
I'm about to go to a meeting where I can't really leave to go to the bathroom and after that will be doing homework the rest of the night.   How many more times will I have to experience the excruciating pain of having to go the bathroom?  How bad will my nausea get if I try to eat again? Will my acid reflux bring acid into my mouth as I try to sleep?  Or will I not be able to sleep because of the prednisone?  When will I be able to do a bag of fluids? What is causing my critically low potassium?  These are all questions that plague me as I sit here trying to communicate with my readers.   But these aren't abnormal questions, they are questions I am pondering moment by moment day by day  but I have chosen to share with you so you can further understand my life and the lives of many others.  I have shared this informationin my not so normal life.

You want to know the truth?  I am tired of fighting a constant battle each and everyday.  I am tired of  constantly worrying about what my body is going to do next, and having to  miss out on the things I want to do.  I am accustom to having to miss things due to being sick, but that doesn't mean it gets any easier.  In fact at times it becomes harder, because the longer you fight, the more worn out you get, and truthfully I am worn out.  It is times like these that I wonder if I am fighting a losing hopeless battle and just making it harder on myself by trying to do school.   The truth is, I don't know if this is every going to get better.  I can pray and take medicine and eat well, but I may never  get better.   That's the trouble with a chronic disease, it never ever is healed.  It may go into remission, but it is always lurking around the corner, and that is scary.  So next time you judge someone who is dealing with an illness, try to see things from their point of view and realize that a chronic disease is stressful and tiring.   So take this blog and realize that the people around you and in your life have a lot going on and we should always be there for each other and help each other through, so those fighting aren't so tired, because sometimes I feel tired and like giving up in my not so normal life.