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.