Sep 20, 2010

Takin’ it to a “Whole Notha Level”

Every time I hear that phrase I smile. It is a recurrent theme with our pastor, Ed Young at Fellowship Church, and can be applied to nearly all aspects of life. He even has a dog that he rescued named Level, because he brought him to a WNL. And there starts the grinning . . . :-)

After my last surgery I was still having quite a bit of abdominal pain that my general surgeon was blaming on my ovaries. To be honest I didn’t agree with him but decided to get checked out anyway just in case. As I suspected my ovaries were fine and the new OB/GYN I was seeing didn’t seem to believe that the pain was in any way related to my girlie parts. While I was there we discussed how Brent and I have been trying to conceive for well over a year with no success and I was attributing that to my IH. She suggested that we go ahead and do a blood test to check my hormone levels, just to make sure everything was normal.

As with most things in my life these days, of course my hormones were NOT normal. Go figure. She decided to wait a month and re-test to see if it was just an off day or a real problem, so a few weeks ago I went back and submitted some more blood – and then I waited, for an agonizing ten days. Friday afternoon the doctor’s nurse called me and told me that my progesterone levels were better, but still too low, and that the doctor had offered to let me try Clomid to see if we could get the ball rolling. After giving her my pharmacy information I couldn’t contain my excitement so I called to tell Brent the good, albeit bad, news.

Today I am on day three of the treatment and I feel no different – except that I have significantly increased energy. I suppose that’s a great thing though! There are two more days to go this month, and then we cross all of our fingers and toes and pray that it worked. Part of me wants to be ecstatic and jump for joy, but my more reasonable side says to be patient and not get my hopes up. That’s not to say to lose hope entirely; it’s just that when this first started I spent months feeling like a failure because I couldn’t give my husband a child. By the time the new year rolled around I was consumed with my headaches and put baby-making on the back burner. Now it’s front and center again and I fear the letdown.

Infertility is such a taboo subject in our society but it should not be. There are more women suffering from infertility than women who are not, a growing issue in our society that could be blamed on a million things but mostly boils down to our lifestyle. Some women do everything right and their bodies just don’t cooperate despite their best efforts. There are still others who neglect their bodies entirely and “accidentally” get pregnant. Women find it hard to talk about and find someone who relates to their problems and feelings to people they know and I just think that’s sad.

Do I feel ashamed of my infertility? At times, I suppose. It’s never a nice thing to have to admit, “I can’t get pregnant on my own, no matter how hard I try I just can’t make it happen.” It really does make me feel like I’m failing my husband somehow, this is what we were as women were made to do and I can’t do it. But on the same token, I am willing to take the necessary steps to make it happen. I think that many women could benefit from having someone to talk to about it.

For the first time in my life, I’ve felt jealously towards the pregnant – but not all of them. Mostly just against the teens, the young women who’ve whored themselves around and gotten knocked up by practically sneezing and it’s acceptable. I do realize accidents happen, but sheesh. It’s a hard pill to swallow. Surely there is a lesson in there, somewhere.

Now that I’m off my tangent, I really am anxious to see how the Clomid works. So far I haven’t had any of the side effects that I’ve read about which is great – I just hope it doesn’t mean that it’s not working!

Love, KC

Sep 2, 2010

Twenty-Six Candles

Twenty-six years ago today, I was blessed with the most awesome parents and family a gal could ask for. In my unbiased opinion, I feel that I’ve lived a pretty amazing life thus far and there is not much more I could ask for. Being as I was the only child for my parents, it’s obvious that I was spoiled – not so much with “things” as with love, because that’s all they had. Times were tough when I was growing up but I was none the wiser, for I had two extremely dedicated parents along with two wonderful stepparents and a slew of grandparents that made sure I knew how great I was.

To this day, my family still makes me feel special on my birthday. It’s not as big a deal as it is when you turn, say, 13, but it’s still nice to know that your family and friends are thinking of you on your day. When I was younger, my mom used to come and wake me up at 2:51am (that’s what time I was born) and sometimes my grandmother and dad would even call me that early. I cherished it. This morning waking up was different, though, because I didn’t feel any older or that any miraculous changes had occurred overnight. My husband by my side and my son in his room, life is pretty grand. I can’t wait for the mornings when we have a slew of kiddos running around the house, jumping on the bed singing, “Happy birthday, Mama!” while my husband is making me breakfast in bed. (Okay, that last part is a stretch!)

Twenty-five was a really BIG year for me, in a lot of respects. Brent and I officially moved in together. Then we got engaged. Then we celebrated our first Christmas as a family, our first Christmas when LB will likely remember Santa. We got married. My headaches got worse. I was diagnosed with IH. I had major brain surgery, and then two more revisions. We realized we were struggling with infertility. LB had eye surgery again. But throughout all of it we made it, and that is what is most important. We have grown and learned so much during this past year that I can’t help but be anything but grateful for this blessed life I’m living.

Today, I turned twenty-six years old. My great-grandmother had my grandmother at 25; my grandmother had my mom at 25 and my mom had me at 25. For as long as I can remember, I was “supposed” to have my first child at 25, too. Obviously that didn’t happen, and before I met Brent I was okay with that – there was no rush! It’s not until you want to have that child that you feel the rush. I feel like I missed the mark. Like I let down the tradition. In a way, I did “have” LB when I was 25, so I guess that is the balance. There’s always got to be balance, right?

So maybe 26 will be my year. It can only get bigger and better from here. :-) A huge thank you to all of my sweet friends and family who have taken time out of their day today to wish me a happy birthday. I sincerely appreciate each and every one of you.

Love, KC

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,

Jul 1, 2010

Brain Surgery, Part III

It’s all over, finally. At least I hope it is. Two days ago I had my third and final surgery for the VP shunt, the second revision in 10 weeks. Of all three surgeries this was by far the easiest, but I just feel beat up and tired.

When I went in for my pre-admit Tuesday morning, my oxygen levels were at 94% just as Dr. Taylor said they would be; so long as I had that catheter behind my lung I would never get above 95%. Brent and I settled in and just relaxed while I waited for my turn in the operating room, it was just the two of us and I enjoyed it that way. He had to go to work while I was in surgery but I knew he’d be back when I got out and it relieved me of the obligations of having to entertain anyone but myself when it was over.

My favorite anesthesiologist Dr. Flewellen was back this time and he was just the sweetest thing. Once he got my IV going we headed back to the OR. That is probably one of the longest rides, from pre-op to the trauma hall. It was a dreary and rainy morning but that operating room was still bright and cheery with him there. I’ve become way too familiar with the surroundings of that room and I almost wish I could wear my glasses in so that I could see better, see all of the high-tech equipment they use and not just the shadows. Dr. Flewellen wasn’t pleased with how my IV was going so he promised that once I was out he would move it so that I wouldn’t be in any discomfort. He gave me oxygen and the nastiest laughing gas and it took me a while to finally fall asleep.

When I woke up from surgery I was sore but not in pain. I could breathe! My oxygen levels were back to 100% as soon as I woke up. All I wanted was water and my glasses but couldn’t have either. The entire surgery took just about an hour and I was up and alert within half an hour of arriving in recovery. They allowed me to call Brent and tell him I was fine, and that I wanted a large sweet tea and my glasses as soon as he could get there. Apparently I mis-communicated to the nurses and they never called him to come, so when I arrived in my room a little after noon I was all alone. Thankfully I knew his work number so I called him then and decided to take a nap with my friend Morphine until Brent arrived a couple hours later.

Every hour I was up. There was no rest for the weary! The new catheter is placed down low in my pelvis, behind my bladder – which means that all that excess spinal fluid is gathering and putting pressure down there. It felt like a strange combination of menstrual cramps and a bladder infection. I can only imagine what will happen when I get pregnant; I can see myself having to pee every five minutes at this rate! Time passed slowly while I read a book, watched some television and played on the computer. My dear friend Rosie came and saw me for a couple of hours which really just made my night. I miss her!

It wasn’t until 3:30am Wednesday morning that I finally fell asleep. I suppose all the painkillers had the opposite effect on me that I wanted them to. And of course, an hour later I need blood drawn and vitals taken so I was awake until 5:15am that time. All I really wanted was to come home and rest in my own bed. Dr. Taylor and Dr. Coimbra said I did amazing and agreed I could go home so I left there at noon. Brent and I came home and enjoyed a Pirates of the Caribbean marathon and I slept like a rock. However the longer the night progressed, the more discomfort I found myself in so ice packs became my new best friend.

It has now been just over 48 hours since my surgery and I feel a lot better. Something interesting I learned while there: I bring a new meaning to “sleeping like death”, because when I’m asleep my heart rate is around 28 beats per minute. It also makes my blood pressure extremely low to the point that I scare the techs and they feel the necessity to call in the nurse. This has happened all three times I’ve had surgery now and I keep telling them it’s normal. It also seems to explain my craving for salt; my blood pressure drops and the salt helps it rise, so despite the fact that I eat way too much salt for a normal person my blood pressure stays around 112/65 when I’m active. Also, I am borderline hypoglycemic so if I haven’t eaten and am active, I shake like a leaf until I get some food. All things I knew but I find it funny to freak out the nursing staff.

Over the next few days I plan on staying in bed, reading a few good books and wasting my time on the internet. I do have grand ambitions for next week though, including making an apron, pies and spending time with my main little man LB who will be back on Monday. I’ve fancied including spots in this blog for the things I love like cooking, so maybe I’ll work on that. Dr. Taylor warned me to take it easy, as he wouldn’t have the time to see me this weekend as he was going to the fixing the idiots who mishandled fireworks (sounds just like a trauma surgeon, huh?)

To my dear friends who offered their prayers for my niece: she was buried today at 10am surrounded by hundreds of family and friends. I wish I could have attended but it would have been too stressful on my body. My memories with her will always be cherished even though they are few. My family and I appreciate all of your kind words.

Sorry for the ramblings; you can blame the Darvocet.

Love, KC
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