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.
