Chronically Awesome!

I know this is usually all about the Finnja and her recent escapades, but this is going to take a little bit of a different feel than normal. It will still have to do with kiddo, but also how it is to be a parent with a chronic medical condition and how it sometimes affects our daily lives and interacting with her.
I was recently asked about my health and how everything has been going. I am sure most of you, if not everyone by now, knows that on April 1, 2009, I was FINALLY diagnosed with Fibromyalgia Syndrome (FM), after being in pain, being exhausted, just generally not feeling well at all for about 15 years. It was a very long process to get that diagnosis. I was treated for so many different ailments, taking me through many surgeries I didn't need, some I did, medications that wreaked havoc on my system, sent me into side effects that were extremely dangerous and frightening, emergency room visits, hospital stays, etc.
I went through over fifteen years of this stuff. That was half of my life at that point. It is a pretty significant amount of time to put into something that you have been told by medical professionals that is "all in your head" even though your body is telling you something else. I felt like I was at a doctors office every week. I would go to specialist after specialist and no one could help or figure it out. They would perform a surgery or give me a new medication or tell me to go stretch or get injections or try acupuncture. None of it was at all helpful. Until I went to a neurologist on April 1, 2009. The day he saw me, he asked for my symptoms, he pressed 18 different points of my body, and diagnosed me right then and there. He told me he could see me, but wasn't totally equipped to handle my case. I am thankful he was honest about that.
I took that information back to my doctors and my Physical Therapists. My Physical Therapist gave me a name for someone in Portland who not only specializes in FM, but she also has it. The light at the end of my tunnel had been found. I got a referral and up to Portland I went, to the Frida Center for Fibromyalgia. Working with my doctor there has been enlightening and amazing. I have found a new hope, a new direction, and most importantly, a doctor who cares and understands, and wants to find answers to help me.
My final appointment was last week. Sadly, with insurance companies the way they are, and funding such as it is, the doors to the Frida Center are closing. It makes my heart so heavy to know that they have done such great things, not only with me, but with so many other people. I would not be any where near where I am today with out Dr. Genevra Liptan and her fellow doctors and nurses at the Frida Center. Hopefully we can keep in contact and I can see her when she finds another place to practice.
So a little on Fibromyalgia...if you have never heard of it, it isn't that surprising, even though it is one of the most prevalent illnesses in the world.  It is fairly "new" in terms of research and understanding. To date, there is no known cause, or cure.  There isn't a genetic link. Symptoms are variable from person to person. Most fibromites are female, but a number of males suffer from the condition as well. Your body is in constant Fight-or-Flight mode. You don't sleep, pain is a daily occurrence, thoughts are jumbled and thinking is difficult at times. You lose words that were right there and struggle through sentences. Arms and legs tingle with sharp pains like they were "asleep", vision issues start to happen, eating becomes an issue, daily tasks become terribly difficult. And that is all on a good day.
If you would like to know what it feels like on a "flare" day, think back to the last time you were really sick, either with food poisoning or the flu. After you were done puking, you feel the soreness all over, the exhaustion both mentally and physically, the fighting to get out of bed, deciding if you would rather sleep or eat, deciding if you were going to go out or stay home, if you would try to get up off of the couch, even deciding if you can  hold your bladder just a little longer so you wouldn't have to get up--that is a flare day. Flares are when all of the symptoms are activated and your body can't relax or let go. Your mind is all over the place and pain takes over your entire system. There isn't much to do except wait it out. You have to be stronger than the pain and the uncomfortable feelings that come with it. You do anything possible to take your mind off it. If you don't, you lose.
I am still trying to get a hold on my symptoms of FM. I am doing a lot better than I was when I first started this journey, but every day is a new step, a new challenge, a new beginning. For me, each day is different. Will I wake up in pain today? Will I have feeling in my hands? Will I have a migraine? Is my back going to hurt? Will stress get to me? All these questions come in. The thing that helps me the most is seeing my amazing wife and my beautiful little girl when I wake up every day. To see them, and get that morning kiss from Shannon, and having Finny run at me with her arms open, her huge smile and giggling until she runs into me, even when it hurts, getting that hug is the best feeling in the world.
There are days when I can't hold Finn as much as I want to. She can't climb on me when she wants to. I can't chase her or get on the floor with her and play with her like I want to. On those days, she and I figure it out. She is learning to be "gentle with Dada" and is learning that I am not pushing her away because I don't want her to be with me, but because it hurts. I have to move her hand off of my chest because she pushed on a trigger point, and sometimes that is the worst thing ever for her, but I tell her to be gentle and give her a hug and redirect her and everything is good in our world again. For being so small and young, she is a very smart kiddo.
She seems to sense when I am having a flare day or just need some time. She gets quiet and will bring a book to me and climb up next to me in the chair or she will bring toys to me instead of me going to where she is to play. She is very cooperative when I need to change her diaper or feed her. When I am feeling good, this sometimes isn't always easy, so it is really nice when I am feeling unwell that she does help out.
It also helps that she is usually more than willing to sit or lay with me in the chair and watch cartoons and take a nap in the afternoon. Afternoons are pretty much when I hit a wall, and to have a little one who seems to need a nap around the same time as I do, works perfectly for both of us. When she doesn't need a nap, however, it makes for a very tired and grumpy day at our house. It is a good thing she is cute, because that is what keeps me from grounding her for  her entire life or sticking her in her crib until mommy gets home. Well, that and she can now climb out of her crib, but that is beside the point.
We get through each day together. With Shannon and Finn. With family who is right next door or right there for us on the phone if we ever need them. With our dear friend Amanda who helps us almost every day. With our amazing friends we see every Tuesday-Ashley, Megan, Erin, Eric, Tracey, Kevin, all of our soccer people. With our friends who watch Finn while we are at work--Korey, Hannah, and Ashley (again ;) ). I wouldn't be able to get through this without you.
Being a parent is hard, but I wouldn't give it up for anything, ever. The love I have for that kiddo of mine will never be replaced or changed or taken away from me. Having a chronic, painful illness while parenting sucks. Would I trade that? Yes, of course I would. But if it meant that I wouldn't be a parent anymore? No, not a chance. I will continue to figure it out and get by. It also helps that I have a high pain tolerance. And a pretty awesome kiddo.