Can you tell by the title where this is going? Can you tell by the title what kind of mood I am in? It’s almost 3am, I just checked in on my support boards because my head is not being nice, I figured I could use some encouraging, one of my closest friends is in ICU and I went on to pray for her and felt a little better, then I saw all the whining on the other board…
So, I decided I would let people know that the doctors are not ALWAYS wrong. There is a very VALID reason that they often tell us with IH to get OFF of our Pain Meds, See www.rxlist.com and type in your pain med, look at the Warning label and see what it does to us…then come see me if you think that the doctor was still crazy for telling you to wean OFF of it, yes, most of our lovely pain meds that make us FEEL BETTER increase our CSF (for the normal person who may read my blog, that’s spinal fluid that protects our brain and spinal cord and causes the Intracranial Hypertension that the majority of my friends have but it also affects many of my fellow chiarians as well)
So Those idiot docs we see, they are not being Mean by telling us to wean off the drugs, they really are helping us, yes, sometimes we need something to control the pain, but more often we are making ourselves worse. Yes, we know our bodies, but they know how the meds work, they are trained to handle the interactions. Sometimes our bodies do not work right and their hands are tied. Do not get angry, that raises your pressures and makes you feel worse. Do not make yourself out to be better than they are, you have not studied and gone to school to not be able to figure your issue out. This is rare, while they are finding more people it affects, it’s still rare and that means that they do not have answers or a protocol outside of their normal routine ways of handling things…if you happen to NOT FIT the mold, Please be patient and think that all you are harming is yourself by getting angry and frustrated. By lashing out at others, you are not making them want to help you. By lashing out at the doctors you are not making them want to rush to find answers for you. If you push your family to either lash out or you push them away, you are not helping them in any way.
If you are not spending your good days with your family (and yes, even those who have Extreme cases of IH and I can name a few really bad cases that are very inspirational off the top of my head, but even they have good days sometimes) But until you have walked in THEIR shoes, count yourself blessed, some have had this more than 10 years and endured hundreds of taps and dozens of surgeries and countless other complications. I have been through less than they have and look up to them, yes, I have had the diagnosis a long time, and I have had some complications, but when I see the people I have met, I look up to certain people.
They are Hero’s they have endured so much with very little complaint, they make me very frustrated when I see people who are newly diagnosed acting like they have a death sentence. Kayla, Lynne, Susan, Brooke, a small number of people who quietly fight and share their experiences, but they help others because they are an inspiration to all who watch them. They do not murmur or complain. Sometimes they ask for strength, or courage, but never sympathy. There is strength. Then I see a little tiny boy, only 5 years old. What will he go through? I don’t know? But one thing I do know, Elijah is strong, and his family is too, and he has role models, while we don’t think it’s fair that he has to endure this, I am sure as I can be, that that little boy will come through a fighter because he is growing up with this not a whiney adult like I see elsewhere. Yes, right now he may see fear when he goes and has a spinal tap or test done but as he grows up, maybe he can be one of the first generations to be spinal tap free, maybe they will learn how to reduce the pressure without it, they are testing it now. Better yet, maybe in his lifetime they will find a cure and he will not have to take meds that make him sick his whole life. Whatever God’s plan, I can bet, we won’t hear Elijah complaining about it, or any of the others, because We are strong, We Will Beat this together.
We may have IH, but as Kayla says, IH will NEVER have Us.
Such an Inspiration for someone who has had this since she was so young I believe if my semi non functioning memory serves me right, Kayla got sick around the same time I did, but that young woman has been put through the wringer more than I have times ten. I admire her courage and strength so much. She is just 16.