Medical update

I posted recently about some doctor drama I was having, so here's your update: After leaving one doctor due to some very sketchy behavior, and finding another I really liked that abruptly moved to New Jersey, I was set up with a local neurosurgeon that works with Chiari patients.
My appointment was good - he was nice, and very knowledgeable. He looked at my most recent scans, did a neurological exam, and talked to me for over twenty minutes. I'm still not sure I would classify it as 'good' news... he said he didn't see any reason for another surgery any time soon, but he also doesn't see me getting any better- ever. He also informed me that the fluid filled area at the base of my head between my brain and skull will never go away or dissipate. Which means, this is my life, forever. I have some control with physical therapy, TENS unit, meditation, and a few other things I have found that take the edge off, but nothing that is going to make me feel truly good. So, as happy as I am to hear that I am stable, and don't need any major treatments, it is hard to hear there is nothing else they can do to lessen my symptoms. I have always held out hope that something will become available that would erase all the pain and symptoms I deal with every second of everyday, but the consensus is I shouldn't hold my breathe... this is it for me.
I know, I know, my life is pretty good. I appreciate my son, my husband, friends and family, but this is the thorn in the side of my optimism - I want to get better! I want to function somewhat normally, I want to work, I want to feel good, I want to have one more baby. These thoughts keep running through my head, I really can't help it sometimes, even though I know I have so much to be thankful for. So, I'm going to give myself a few minutes each day to mourn the life I really want, to get mad that I will never know a "normal" life, and allow myself to be angry that I will be in pain for the next fifty plus years. Then, its time to let go of those feelings and remember how great my life can be when I try to be happy. Being happy really is a decision, a choice you have to make everyday. Life will always hand you reasons to be stressed, but it rarely shows you the way to happiness.
I still have to find the neurologist and rheumatologist I want to work with, but I'll get there when I'm ready. After being with the same neuro/pain specialist for seven years and having it end the way it did just made me a little leery of new doctors. I promise I'll get there, but I'm in no hurry.
So, I'm in pain, nauseous, exhausted, and my joints are swollen (among many other symptoms). Each day is hard. Every morning I wake up, before I even open my eyes the very first thing I feel is pain, and I wonder how I'm ever going to make it through the day. Logan is a great motivator, but its still hard to force myself to move. . . every time I move it takes effort, it hurts, its exhausting. I've learned how to hide it most of the time, mostly when I'm around anyone outside of my husband, son, mom, and dad. Its hard for them, its hard for me, its just too damn hard to imagine this is how it will be for the rest of my days. By the way, I'm thirty two years old, and I've had this pain in my head every second since I was twelve. When I think about it now I wonder how I did it - growing up with constant pain and suffering. Somehow I still found a way to play hard! I grew up riding wave runners, swimming on competitive teams, boating, hanging out with my friends, traveling with my family, and having an all around great life. I've always been able to move through the pain, but as I get older it just gets harder. I wish I still had that never ending energy of childhood, it certainly made getting through the day with pain easier.
I know its hard for most of you to imagine feeling pain of any kind constantly, but sometimes my head hurts so bad I can't even think or talk normally. I don't want you to feel sorry for me, I don't want your pity... I do want you to think of me when someone at work irritates you, think of me when you are on your last nerve with children thinking "there is nothing more stressful than this", or when your cleaning your house dreaming of all the other things you'd rather be doing. Someone out there is praying to be able to do all those things, someone out there is wishing they could just function enough to do the basics of life. Someone out there is missing their child, someone out there is unable to find a job, and God willing that someone will never be you.
As usual the moral of the story is: we all have plenty of reasons to feel stuck, we all have some form of stress, but can you find a way to focus on the best parts of yourself and the world around you?
"The secret of health for both mind and body is not to mourn for the past, nor to worry about the future, but to live the present moment wisely and earnestly." Buddha