Dear Chiari: An Open Letter to My Illness

Dear Chiari: An Open Letter to My Illness

Dear Chiari,

Can I be honest & speak my mind here… I keep fairly quiet about you. I try to raise awareness, help others dealing with you, and I try my best to let people know they are not alone in this battle. I try to keep the complaining down to a minimum, when sometimes I just want to shout how miserable you are. I want to know that someone else gets it… You aren’t just a “normal” headache that everyone experiences; while at the same time I also want to know that people get you are so much more than just a headache/head pain. People rarely realize that you can cause over 200 symptoms just to 1 persons body. Some experience minimal symptoms, while there are those of us who like myself have symptoms that are in those triple digit numbers. I want to know that people are educated about chiari & know that it isn’t just a headache, but it is an actual issue with our brain. The brain is very complex & when dealing with the brain it can affect any & every part of our body. Who would have thought having chiari would cause nerve damage leaving my stomach paralyzed keeping me deathly sick for years. I never dreamed I would have most of my stomach removed because of chiari. You can’t make this stuff up, it is so ridiculous to think of all it affects, but even more ridiculous to see & know first hand that doctors and individuals aren’t being properly educated in this area. Yes, there is research being done, but truth be told, how many of us had ever heard of Chiari before being diagnosed or having someone we love being diagnosed? I know I hadn’t and 99.9% of the people I talk to through my Facebook page: Chiari Malformation Support & Encouragement had never heard of it prior to diagnosis either.

Chiari, if you were a person here are some things I want to tell you about yourself:

You’re expensive… you are constantly racking up medical bills… emergency room/hospital visits/stays, brain surgery, and other surgeries related to the problems you cause, medicines, treatments, doctors… Oh the joy of constantly having to go to the doctor… and not just one doctor. You are so complicated you require multiple doctors for all of your multiple symptoms; you’re very complicated. Who needs 12 plus doctors? Apparently someone with chiari, it’s associated disorders, & numerous symptoms. I fork out money I don’t always have to get no answers and no relief. There are times I debate going to a follow up appointment (with chiari it is constantly a follow up appointment) or rescheduling it to another month so I can have some extra money to go to the movies, grab a bite to eat, or simply just to sit at home and know I didn’t waste forty or more dollars for a doctor to look at me for 5-15 minutes to tell me nothing new & to come back in a few weeks. And need I bring up the insurance costs? And if I need or want to change some insurance companies won’t take me on, simply because of you. You are a pain…

(found on pinterest) 

You’re a pain in every part of my being. I hurt from head to toe, you cause so many symptoms that I can’t even begin to cover them all. What can cause you to have 0 to over 200 symptoms? Chiari, that’s what… It’s ridiculous! Sometimes I don’t know whether to be frustrated beyond belief or laugh. Mostly I choose to shake me head, put on a smile, & keep putting one foot in front of the other & go about my day.

You’re a thief… You are robbing me of precious time, health, friends/family, finances, opportunities, and more than anything you are robbing me of life. There was so much I aspired to do and be, but I feel trapped in my ever aching disabled body. I strive to be independent, but you have sure knocked my pride down several notches… It’s hard to ask for help. I am 30 years old; I should be out conquering the world and achieving my goals and dreams, yet here I am… I am exhausted before my feet ever hit the ground in the morning. I have to have time to recoup after taking a shower. I get so dizzy trying to dress myself, I sometimes end up in the floor and have to take a break there until I am able to stand again, & the day follows suit of do this, take a break, do this, cause more pain, it is a never ending cycle of pain and difficulty. I feel like I am never winning in all of this, but deep down I know I am fighting a good fight. And as long as I am not giving up, I choose to see myself as winning for now.

You're a bully... plan & simple.

You make me vulnerable in more ways than just one… Sure you affect my immune system leaving me susceptible to catching just about anything and everything. Walking into an emergency room I already know I am going to leave with some added illnesses on top of whatever I came in for. You also leave me vulnerable in my emotions; but have my eyes ever been opened to those out there dealing with health issues (not just with chiari) and how my heart breaks for them, but also I want to help. I want to pray for them & be there however I can be. Making me more vulnerable has been a mix of things. It is definitely a mix of the good, the bad, & the ugly… The ugliest form of you leaving me vulnerable is the harm some are willing to inflict on us. We all deal with bullying, harassment of what others think we should be able to do, how they think we should feel. But, I often wonder how many people have been taken advantage of, abused, & sexually assaulted because having chiari & being put on certain medications can often times leave us in a zombie like condition. When first diagnosed doctors had me on so many medications, many of which threw me for a loop. I was constantly in a dream like state trying to function the day after, but at night when I took them I was almost in a comma. Unable to function, barely able to wake, & fighting off unwanted advances from someone that saw an opportunity (when I should have been in a safe place) to take advantage left me a loser in a fight I could not physically fight because of the medications I was on at the time.

Chiari, you cause more problems than most people could even imagine. I can say without a doubt I have a love - hate relationship with you… If you were a person, although I am not a violent person I think I would smack you about as hard as I possibly could. You make me angry, I am angry… no one should have to endure the things I have with you. Yet, part of me would shake your hand and say, “Thank you.” Thank you…for opening my eyes to see people who are hurting all around me. For not only opening my eyes to see, but my heart to love those who are suffering and to have compassion for them. Thank you for pushing me to be a better person & for pushing me to always do my best to help others. This journey is not an easy one, but I will do my best to make the most of it while helping others along the way.

Yours Truly,
April

Out of Control - Betrayed by Your Own Body

There are many things we tend to take for granted, because we have never really had to live without them. Such as breathing; it is a normal, everyday occurrence that many of us do not even think twice about. But take away our ability to breathe freely and we quickly learn to appreciate that what we once took for granted.

Feeling like you have control over your body is something I’m sure most people do not even think about. When you want your hand to reach out & grab hold of something, you usually have control over your body to make it do just that. When you have to go to the bathroom, but one isn’t available most can usually control their body to wait until one becomes available. It is something that seems so simple, but yet it is something we just don’t truly appreciate even in the small or larger scheme of things.

My journey with chiari has been one of heartache, confusion, victories, defeats, and survival. One of the things I find most challenging about it all is control… I am a person who likes order and control. I want my body to do what it is supposed to do and I want to be able to rely on it to get me through the ordinary everyday tasks that have to be done. The pain manages to knock me off my feet & often, but through most of it I still manage to function at some level and accomplish the things I need to do, while wearing a smile on my face. Sometimes the smile is for myself, but mostly it is for appearance sake so no one sees the amount of pain I am in. I love people & I love being open and honest about a lot of things. But when it comes to chiari & my pain, I tend to keep that a little closer to myself. I don’t want anyone to see the daily struggle, because at the end of the day I am simply April… I am just me…no more, no less. I don’t want anyone to look at me with pitty or feel sorry for me, I am just me…I am dealing with all of this the best way I know how. I do what I can & usually more than what I should, because I refuse to let pain and other symptoms keep me down.
But there are times that these symptoms from chiari aren’t just about pain, discomfort, or being limited in doing things. Some strike pure panic & fear in you to your very core. There is nothing to compare what it feels like to not be in control of your body. The not knowing if I can brace myself against a wall & walk myself out of passing out. The fear of how people are going to react if I do hit the ground. The helplessness of not knowing what your body is going to do & knowing it can betray you at any given second.

Today I went to the store with mom. I get so tired of being cooped up in the house & it’s nice to get out even if it is only to a store to walk around for a few moments. I was simply looking at candles and mom nor I  thinking twice about it she walked on doing her own thing. As I decided on the scent of candle I wanted I grabbed two in my hands & turned to go put them in the cart mom was pushing. As I turned I felt light headed, the room was getting darker and closing in on me. As I reached out to grab hold of mom to brace myself she wasn’t there so I grabbed hold of the shelf after putting both candles in one arm. It was pure panic… I was afraid of blacking out in public, I was afraid of the candles hitting the floor & shattering, what it would all look like, any commotion it may cause, and the list goes on. So I stood there; eyes closed bracing myself up hoping it would pass, but it didn’t. Taking a deep breath easing away from the shelf I began to take small steps toward going & finding mom to help get me through the store. I managed to find her after taking several breaks a long the way & used her cart to brace myself up to get through to the check out. And wouldn’t you know we ran into a wonderful friend I hadn’t seen in years. Of course nothing but smiles & a hug followed by “how are you doing?” In response I smiled and said, “I’m okay. Coping.”
But once I got home behind closed doors, away from everyone I just broke down and cried. I can say it is not fair to be young and have to deal with this, but it’s not fair no matter what age you are. No one should feel like they are not in control of their body. It is one of the most miserable feelings. A feeling that would make it so easy to lock yourself up at home to avoid making a scene in public, because your body just won’t cooperate like it is supposed to. It’s embarrassing to say the least. But you take a deep breath and you keep putting one foot in front of the other day after day. You manage somehow…you cope… you make it…against all odds you somehow make it.

This picture was taken before typing this blog. Amazing how we never "look" sick. If only it looked like what we felt...that would be pretty scary. 

Chiari Symptoms & Some Associated Conditions

Chiari: Standard of Grace Not Perfection

There's a struggle in knowing what it is I should be able to do & what I can actually do.
At my age I should be out conquering the world, building a family, & having the best times of my life to date. Sadly the reality is I have a chronic illness; the monster by name is called Chiari.
What? Chiari? What is that? Did I say it right? I have never heard of that. Is it really a thing? What does it mean? You don't look sick. It must not be that bad, since you still look good.
The reality is chiari is real & even more so it is for lack of better words... COMPLICATED!!
Never heard of chiari? Join the crowd. We are told it is rare, but it seems to be becoming more common; which breaks my heart. So what exactly is chiari? In simple terms our brain is too big for our skulls to contain. The brain & tonsils of the brain tend to herniate down out of the skull & get pinched between the skull & spinal cord cutting off or restricting the CSF (cerebral spinal fluid) flow to our brains. It in turn causes numerous symptoms that vary from person to person. Remember when I said, "Chiari is COMPLICATED?" Well here's the thing, Chiari is not the same for everyone. One person may have over a hundred different symptoms that are severe & excruciating while another may have little to no noticeable symptoms at all.
Back in the day researchers & Drs measured the severity of chiari based off of the herniation size only. Now thanks to more research & CINE MRI's it has been shown that the size of the herniation has very little to do with the symptoms. It has more to do with the blockage of csf flow.
Symptoms can range from any variation; it's our brains we are talking about...that affects anything & everything!

Here is a list of the most common chiari symptoms: (photo source; www.conquerchiari.org)

Most days I wake up feeling defeated before my feet ever touch the ground. Insomnia is huge and on the rare occasions I sleep more than a few precious moments I am woke up from pain. My head hurts so bad that it demands to be felt, pulling me from my dreamy state to the harsh reality of what my life is with chiari.

I am fairly young and although my mind says I should be out conquering the world, working, building a family, & experiencing the best days of my life there are days that my greatest accomplishment is dragging myself from the bed to the recliner; sometimes there's the added bonus of having enough energy to shower. My head and body hurts in such a way that I can't begin to describe, much less make it to where anyone can understand it. The pain is so bad you want to cry, but you fight to avoid the tears. Why would you fight to avoid the tears? Simple... crying makes it hurt that much worse. Laughing hurts, singing hurts, everything hurts & makes it worse. So rather than shed those tears, you take deep breathes, close your eyes, & pray. Pray or help, relief, mercy, even just a moment free of pain.

But you don't look sick...
Me being who I am... I will scarcely let anyone see my pain. Even those rare few who are in my inner circle or family will see the pain I am in. I am a fighter. I am ashamed of my illness...and who it has left me as. I have always been the one to put on a smile regardless of what is going on around me. As Elsa (Frozen) sings,

" Don’t let them in, don’t let them see

Be the good girl you always had to be
Conceal, don’t feel, don’t let them know
Well now they know,' 

I conceal, I cover my pain with a smile, what I hope is a good attitude, & determination to do my best. One of the most valuable lessons I have learned on this journey is to hold myself to a standard of grace not perfection.

 

(image source: Pinterest)

As a perfectionist who loves to feel in control; this has been an interesting and challenging journey. I am still a work in progress. I hate the feeling & knowing that I am not always in control of my body & what it may do. I despise the fact that I have tried treatments of every kind, including brain surgery & nothing has helped. But, I keep trying. There are times I have to take a break... the poking, prodding, cutting, medications, treatments, tests, etc just get to be too much; and I need a break. But I always get back up & get back out there to try anything to feel better & find relief.

Some treatments & medications that Dr's think will help; makes me feel worse. This past week I was put on Alzheimer's medication as  an attempt to get relief. My dr's aren't shy about telling me how everything else has failed to help & it's a struggle trying to come up with new things to try when you've tried pretty much everything. So here I am trying this new medicine that makes my head hurt twice as bad, but for now I will keep taking it & toughing it out just to see if it gets better. 

Today is one of those days where I am having to remind myself that one way or another; no matter how bad it looks or feels I am going to make it. How am I going to make it? Honestly, I don't have a clue, but I refuse to give up. I will continue to pray & believe for miracles for the entire chiari community & all others who are suffering.