Saturday, May 22, 2010

This and That

Well it's been a while since my last post and lots has happened, not much exciting nothing further as far as the RNY, basically I have been too sick to really get any further on the process, IH has overtaken a period of my life and I have been busy trying to make sure it is not winning the war.

I have not made it to church nearly as much as I would have liked to over the last two months. I barely passed my last class, and with that, I got through Business Law with just a C+, my brain never picked up pace during this quarter at all. In the last 10 weeks I have not had more than a few good hours put together in a row, so not what I am used to.

In just a few more days I get to celebrate my anniversary On May 25, 2010, I have been married to the most wonderful Man on earth for 9 years, that's longer than most marriages last anymore, especially for people my age.

On May 27, 2010, I see my Neurologist, he and I are going to have a LONG talk, My body and I are not getting along again, I have been having lots of falling episodes again, so not cool, usually right back on the couch or chair, but still not cool, I went to walk to the shed and Chris had to walk with me holding me steady the whole way back.

Headaches, we won't put a number on them, it's too high to identify way past ten most days, and those are my better days.

So, my and that has been a rough road. There has been a lot going on and I am tired of it. I am ready for a break and I am ready to see my friends have one too.

Thursday, May 6, 2010

I walked out of my Doctors appointment without feeling defeated

I saw Dr. Z this morning, she is my wonderful endocrinologist. She has been helping me stay away from becoming a diabetic as well as working towards correcting some vitamin deficiencies and PCOS as well as getting me ready for bariatric surgery which we are aiming for in the fall.

I am down 8lbs in 2 months, Not a lot but it means we are finally FINALLY making progress. We are not sure if it's the meds, the dietary changes from the constant nausea, or what, but I have not lost 8lbs EVER.

She would like to see another 30lbs down before I have the surgery, but now I have more incentive than ever to get it gone, that means I would be that much closer to hitting a better goal. She likes the surgeon I picked, and is writing a really GOOD report for the insurance for progress notes, yay.

I see her again in August. Hopefully surgery will be scheduled for September or October.

Monday, May 3, 2010

If you don’t want to listen to your Doctors then STOP complaining about them and find New ones

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 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.