Aug 30, 2010

Do Fun Stuff!

Today is the launch of Do Fun Stuff! on iTunes. If you have little ones I highly suggest you purchase it NOW for them, just to see the crazy dance party that will take place.

Let me back up: what is Do Fun Stuff! you ask? This little gem is a charity album that Ryan Marshall over at Pacing the Panic Room put together for his son The Littlest Buddy who suffers from Smith-Magenis Syndrome (SMS). All of the proceeds from the sale of this album – 100% y’all! – will go to PRISMS, a foundation for the families and researchers of SMS.

Ryan has been working on this album for close to a year now, I think, and today is a big day for the Marshall family. I first found his blog back when his beautiful wife, Cole, was pregnant with their daughter Tessa and he was doing her maternity series. Between the amazing photography and witty, in-your-face stories I was hooked. Reading PTPR was also the reason I became all-consumed with natural births, but that’s another story.

So please, take a few minutes of your time today and check out Pacing the Panic Room, read Ryan’s stories about The Littlest Buddy and SMS, watch an adorable video of LB’s birthday send-off (he is retiring from the blog now that he’s six years old) and keep a couple of tissues handy. Then go on over to iTunes and purchase Do Fun Stuff! for only $9.99. If you’re not into the iTunes scene, you can also click on the “Make a Donation” button below and do your thing.

Now go on, DO FUN STUFF!

Love, KC

Aug 26, 2010

The Bucket List

At some point everyone needs a bucket list. I’ve been thinking a lot about mine lately, about the things I’d like to accomplish before my time here is done. Frankly we never know when we’ll take our last breath and I’d like to think that I did something with my life. For my own list, I don’t think that any of my goals are unattainable; some may take years to make happen but the point is to try. Don’t let your dreams die.

My list is short compared to some I’ve seen, and I believe it can be ever-changing. There may be something I think of tomorrow that I really want to do, or maybe I’ll think of it ten years from now. Whatever the change may be I will keep this list with me so that when I do accomplish one of these goals I can cross it off my list, triumphantly.

- Live near the Olympic National Forest
- Attend a cooking school in Italy
- Scuba dive
- Adopt a child
- Own a home
- See the Great Barrier Reef
- Climb the Eiffel Tower
- Learn to speak Italian
- Teach my children sign language
- Learn to play the piano
- Learn to play the guitar
- Learn to play the drums
- Graduate from college
- Own a café
- See the mountains
- Get close to a tornado
- Stand in the eye of a hurricane
- Own a street bike
- Have a picture I’ve taken featured in a magazine
- Make money doing something I love

Some of my goals may seem commonplace to you (“You’ve never seen the mountains??” you gasp) but in the grand scheme of things they are important to me. Today is the day I work towards achieving my goals.

Love, KC

Aug 24, 2010

What if There Was More?

When you’re in tune with your body you tend to just “know” when something is amiss, even if you can’t get your doctors to believe you. Of all the years I suffered with migraines somehow I just knew it was more. As if the fact that no migraine medications that I was prescribed did anything for the pain was not enough proof, I had a gut instinct that there was more going on than anyone realized. At the same time I knew in my heart that it wasn’t life threatening – no tumors, cancer or aneurisms – I was just off.

When I finally found the Intracranial Hypertension Research Foundation it was as if my whole world had been changed. I cried for everything, out of happiness, relief, frustration and pure terror. Before I ever had an affirmative diagnosis I knew in my heart that IIH was the cause of my pain and that meant that I had a rare brain disease – but it wouldn’t kill me. Suddenly I was filled with hope like I’d never had before. Standard courses of treatment failed and so I was to have brain surgery. Brain surgery. It was the best thing I could have ever done for my health. Hope for brain surgery? Abso-freakin’-lutely. Never in my life have I felt more human or alive than I do now, and getting better every single day. That’s a blessing.

A woman who I have never actually met but have come to admire greatly recently mentioned on Facebook that she thought she had found a cause of IIH. While I skimmed the post I didn’t have time to pay much attention until Monday. What she had found was Hughes Syndrome and for the second time in a year I felt an A-HA! moment come on. While reading through the official site I started getting jittery, and well, excited. Excited for another problem? Yes!! Why? Because I didn’t ask for these issues. My only guess is that God felt I could make some good come of the situation, help champion a cause, something He thought I could make of this.

Hughes Syndrome is akin to having “sticky” blood. People with Hughes tend to form clots at a much higher rate than your average individual, resulting in an increased risk of stroke and heart attack, among other things. What’s more is that it can also cause headaches and/or migraines AND pregnancy problems. Understanding my A-HA! moment yet? Even with my shunt I am still having headaches but they’re not pressure headaches, occurring at least every other day. Obviously I’ve had fertility issues that we are still finding the cause of. But what stuck out to me was the presence of a skin condition called livedo reticularis. When I saw the picture, I laughed. Out loud. At my desk. I’m sure my coworkers thought I was crazy.

For as long as I can remember I have been pale as a ghost. My skin tans in the summer only to the color of a normal person’s “white”. As pale as I am though I am also very pink. Around the age of ten – about the same time I started really noticing my headaches – I developed what my mom thought was a rash on the inside of my legs and forearms. We had recently gotten a kitten and the doctor told my mom that I had ringworm, and to put an anti-fungal cream on me when it flared up. That was over 15 years ago and I gave up on the cream almost immediately because it did nothing.

During the winter the “rash” always got worse, making me look like my capillaries had all come to the top of the skin in a webbed pattern, especially if I’d spent a lot of time outside. As an adult I still have the issue and I know that it wasn’t caused by any pets. My laughter outburst? Caused by this photograph.

Why laughter? Because that is EXACTLY what my skin looks like. To a tee. Epiphany? I think so. So what’s the good news? It’s that the condition can be diagnosed with a simple blood test, and depending on the severity it can be treated with as little as one baby aspirin daily. That’s it. So for the last 15 years or so one little, bitty baby aspirin could have kept me headache-free. While not proven, it is a likely theory. I am giddy with excitement of having the test done to see if it’s true.

To top it off? While researching Hughes there was a possibly related article titled, “Can a baby aspirin help you conceive?” Again, not a proven theory but a possibility and at this point, we will try anything.

Fifteen years. The thought upsets me, the things I may have missed and the years I spent needlessly suffering – a fact for which I am eternally grateful because without the hardships I wouldn’t be nearly as strong as I am today.

Love, KC

Aug 20, 2010

It's Been a Year . . .

It is coming up on the one year anniversary of this little blog, and it’s been neglected I’m afraid.

When I first set it up the intent was to document our journey to babies and we certainly never thought that a year later we’d still be trying. Somehow I imagined that it would happen immediately and I guess you could say that it was that idea that terrified me the most. You decide to have children and expect it to happen right away and when it doesn’t you suffer from a various mix of emotions. For us now it has only further confirmed how ready we are to have more children and make LB a big brother.

Looking back on the situation I can only surmise that God had a plan and as always, knew much better than the two of us did! Who would have thought that I would get so sick with my headaches, find out I had a rare brain disease and have three major brain surgeries – all in a matter of six months? There is absolutely no way my body could have handled a pregnancy before.

We first started trying to conceive at the end of August, and I quit taking not only my birth control pills but also all of my migraine medications and anti-convulsants. It was the first time in over three years that I had been un-medicated for my headaches and at the time I thought I was doing really well. The headaches didn’t seem to be too severe in nature and were only coming a couple times a week at first, and not so badly that a Darvocet couldn’t rid me of the pain. However, the closer we got to year-end the worse things got. Then, on January 3rd I had the worst attack yet that sent the diagnosis-ball rolling.

My original neurologist had me checked for aneurisms and the like only to find nothing. All he wanted to do was continue to medicate me even though the migraines were getting worse and none of the other dozen or so medications he’d tried had worked. In the meantime I did my own research and came across a site for pseudotumor cerebri, or idiopathic intracranial hypertension. When I presented my findings to the neurologist he basically told me I was crazy and threatened me so I found another doctor – my champion, Dr. Herzog. Within five minutes he was in 100% agreement that I needed to be tested for PTC; within a month I was diagnosed and having brain surgery a little more than a month later.

Today I am about four months post-op from the original surgery, and almost two months from my last revision. I haven’t felt this great in many, many years. When I have headaches they are minor and mostly weather related I think. No pressure headaches! However from the final surgery I had been having a lot of abdominal pain as a result of the placement of my shunt catheter so as a precaution I visited a new high-risk OB/GYN to ensure there were no issues. While there I mentioned to her that I had been trying to conceive for about a year with no success and she suggested that I have my progesterone levels checked. As it turns out, they are rather low and most likely the cause of my infertility. For the next couple of months I will have to have it checked to see if it is constant and if it is, what steps we will take.

Going into the diagnosis of PTC I knew that infertility could be an issue. Several of the women who are diagnosed also have PCOS or other symptoms of infertility. It’s wonderful to know that you are not alone in this journey and also to see that there is hope – a lady in our group recently had her first child despite it all. While I know there could be potential complications I am willing to learn as much as I can to avoid them. The only bummer I have experienced is that my doctor all but dashed my hopes of a natural homebirth, saying it is just too risky. I do tend to agree with her, so I think I will focus my sights on a birthing center where I can still be free to roam. One step at a time though.

As much as I promise, I really do need to keep this blog updated. There are so many things I want to share and just don’t make the time. LB is growing so fast and becoming a little man, there are a ton of recipes I’ve been dying to share, and we have expanded our four-legged brood with a kitten. All in due time . . .

Until then,
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