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

Jun 17, 2010

Brain Surgery, Part II

We arrived home from the hospital that Sunday night well after midnight. I didn’t remember much of the ride home and was very grateful to be sleeping in my own bed. Monday morning around 9:15am my surgeon’s assistant, Peggy, called me to check how the trip to the ER had gone. I told her how disappointed I was with the care I received and that I was still leaking fluid, though not very much. Peggy was going to make a few phone calls but was pretty sure the doctor would want to see me that day, so I put a wad of tissue in my belly to catch the fluid and sat down on the couch.

Within fifteen minutes that tissue was soaked through and this time the fluid was a pinkish tint, so I was officially panicked. Immediately I called Peggy back and told her what was happening. It went from a dribble to a river within minutes. As we figured, Peggy told me to come immediately to the hospital and I was to be admitted to Physician’s Referral – which helped me bypass the incompetent ER. Brent had gone back to work for the first day since my surgery and had only been there since 9:30am so I felt bad about having to call him to come get me, but I still couldn’t drive at this point. While I waited on him I repacked all my bags for the hospital because my gut instinct told me I would be there for a couple days.

As soon as we arrived at Baylor I was sent off to Roberts Imaging to have a CT done of my belly. Dr. Taylor, my general surgeon, was in surgery at the time so we waited for a couple of hours to see him. When he finally came in, he honestly looked a little defeated – but he confirmed what I’d thought all along. My shunt catheter had moved, working its way up to the incision in my navel and was pouring spinal fluid out at an alarming rate. I had been headache-free since the day after my surgery and was only beginning to get a minor one back, but at least we knew the shunt was working! That evening I was readmitted to Baylor and a revision surgery was scheduled for the following day, Tuesday, at 11:00am.

First, and most important, was to ensure that I hadn’t gotten an infection from the negligence of the ER sending me home. The incision had now been open for almost 48 hours and if there was infection the entire shunt had to come out – even the head portion. This terrified me; I’d had absolutely no problems with the incision in my head and it was healing wonderfully. When discussing my options for the revision, I was initially given two scenarios as to what would happen. So long as no infection was present, they would replace the tubing as it was; if there was an infection, they would let the shunt drain externally for up to two weeks while I took a high dosage of antibiotics. After that time frame they’d go back in and replace it. Either of these worked for me so long as I didn’t have to have my head operated on it again. I was wheeled into holding and met my new anesthesiologist, who immediately rubbed me the wrong way, but he gave me good drugs and I don’t really remember much after I got into the OR.

When I first woke up in recovery, my immediate thought was, “What the fuck, I can’t breathe!!” I began gasping for air and crying, I could NOT figure out what was wrong. Finally the nurse came over and gave me some pain meds that didn’t do a thing for the crushing sensation in my chest. It was as if I’d gotten breast implants again, the exact same feeling. I begged for all sorts of things: a drink, better pain meds, my glasses, and to have my bed raised. The only thing I was granted was my last wish, and raising the bed some seemed to take the pressure off my chest. When I was finally able to see Dr. Taylor he explained that they had moved my shunt catheter behind my right lung – and in order to do this it had to be collapsed. Bingo! There was the source of my pain. They informed me that so long as the catheter was there my lung would remain about 5% collapsed, so even as I type that is where it stands.

Just as before, I was unable to see Brent after my surgery, only this time I spent close to eight hours in recovery. EIGHT HOURS!! No one could figure out where I belonged. Repeatedly I told the nurse that I was in Truitt 309, I had been admitted the night before and that was my room, but my anesthesiologist thought I shouldn’t be in that room. See, the hallway I was in was the ICU hallway and he didn’t think I needed to be in ICU; however, the particular room I was in was a neurology room specifically for patients at risk of seizure – NOT ICU. This conversation went on for a good hour between the staff at the foot of my bed, all the while I was crying both out of frustration and pain. The fact that they couldn’t get my pain level under control was also concerning because no matter how much they gave me nothing helped. Finally around 9:00pm I was given a PCA pump, where I would be administered Morphine every ten minutes at my choosing, as well as a breathing treatment to try and help my lungs. Once I had my pain pump in place I was sent back to my room – and I was highly pissed at the anesthesiologist.

At some point while I was in recovery I had complained about the rude doctor to Brent. Little did I know he had immediately gotten on the phone with the hospital ethics team and filed a complaint. (Let me just say that I don’t remember fully what happened that day, but I do remember him accusing me of abusing pain killers and that was why I wasn’t getting any relief from the meds I was being given – among other things.) Sleeping became next to impossible the next few days and I was having some sort of allergic reaction to the Morphine to the point I was clawing myself in my sleep. Poor Brent went and rounded up all sorts of Benedryl and Gold Bond to help me out but nothing worked so they switched me to Dilaudid, or hydro-morphone. For the next three days I sat in that bed trying to breathe and waiting on the results of the cultures from my surgery to ensure I hadn’t gotten an infection. I was taking numerous antibiotics and probiotics and by Thursday night I was on my 4th IV since I’d been admitted. Put a fork in me, I was D-O-N-E.
Friday morning rolled around and my cultures were clear – no infection! There were two new incisions, one along my collarbone and one just above my navel that cut out my former belly button ring. We were given the option to stay until I felt my pain was well controlled but when that 4th IV blew later that morning, I opted to leave. I was sick and tired of the hospital and just wanted to be home in my own bed. Four days in was way too long for me and I wanted nothing more to do with the place. Brent ran a couple of errands that morning while I packed up my room to the best of my abilities. There were clothes strewn about and toiletries all over the bathroom, it was like we’d been living in a hotel for the last few days. When the orderly came to get me I loaded up a rolling cart with all my belongings (and my four pillows I’d brought) and finally got to go home.

When I walked in my door at home I cried. The dogs had been left out of their crates while we were away and not been let out regularly so they had messed all over my carpets (we had someone watching the house . . .) To top it off, Stormy, our German Shepherd had taken it upon herself to piss on our bed, in my spot. I just couldn’t take it; I thought I was going to lose my mind. Brent took all of the bedding off and moved our extremely heavy memory foam mattress off the bed and pulled in the mattress from our extra room, made the bed and put me in it. Sleeping was ridiculous as I couldn’t get comfortable on this soft mattress and I really wanted our memory foam back. Thankfully Brent was able to stay home with me for another week and make sure I was okay – plus, we’d gotten LB that Sunday after I came home and I was in no shape to care for him by myself.

It has now been six weeks since that revision and I am still having severe pain in my lung that radiates to my shoulder. After much discussion it was decided that I would have another revision to move the catheter back to my belly, only this time a little lower near my pelvis. My last MRI showed that my ventricles had disappeared and were being drained too well, given me low pressure headaches and causing the intense pain. Every time I took a breath the fluid would be pulled out due to suction instead of draining on its own. So as of right now I go back in first thing Tuesday morning to have the revision. It has been a long journey but I think I see the end. Hopefully this one will go much smoother and I should only be there a day – no collapsing of the lungs this time! Never have I been so anxious to return to normal, and I cannot wait to get back to work.

On a separate note, I will say that I have got to spend this last six weeks home with LB (he’s been here the entire time) and he’s progressed quite nicely. He is now fully potty trained with the exception of nights and he has just grown so much. I’ll be sad to see him go this Sunday but grateful for being able to recuperate alone.

Until next time, KC

Jun 15, 2010

Brain Surgery, Part I

I realize I am looooooooooong overdue for this post, but I tend to think for good reason. It’s not for lack of wanting to write it, I just know that it is going to be a long post that will take a lot of energy – something that I am trying to gain back piece by piece. So let’s start at the beginning.

On Tuesday, April 27th at 5:00am I arrived at Baylor Dallas. We had to go early so I could do a blood pregnancy test to *ensure* I wasn’t knocked up (could’ve told you THAT without the needle!) Most of my family came – my husband, my mother and her boyfriend, my mom (grandmother), my dad and stepmom, and my best friend Carly. Surgery was scheduled for 7:15am sharp so I got to spend time with and see everyone beforehand. They all did an excellent job at keeping my spirits up, because although I wasn’t scared it’s still never fun to be under the knife, especially when you’re getting part of your head shaved. We laughed and joked about all sorts of nonsense, talked to the surgeons, got the most horrific IV ever placed in my wrist, and said our good-byes. It was supposed to take about 4-5 hours from start to finish. The anesthetist was amazing; he promised great drugs with no sickness afterwards (and he delivered!). I remember the whole ride to the operating room, talking to the nurses and moving over onto a steel table with an egg-crate cushion for my head. As soon as I lay down, I was out.

When I woke up in recovery, I was cold and thirsty as I usually am, and a kind nurse was putting hospital-grade Blistex on my lips (I should mention that I now have four tubes of the stuff and it is awesome). There was goop all in my eyes much like what they put in newborns eyes and I was not pleased. I really tried to be nice but was mostly pissy because a) they wouldn’t give me anything to drink, b) I couldn’t see and wanted my glasses and c) I wasn’t allowed to see my family. Little did I know at this point that they didn’t even KNOW I was in recovery. The pain wasn’t too bad but they kept it manageable, telling me the entire time that I could only get the good drugs in recovery so they were keeping me until I was comfortable. Come to find out, the nurses couldn’t figure out where I was supposed to go – ICU or a regular room. I’d been told I was to go straight to ICU for 24 hours and then transfer to a regular room for 24 hours before I could go home, but apparently I’d done so well during the surgery that I could skip ICU altogether, YAY! Finally they let Brent come see me, bring me my glasses and give me lovin’s. After that my mom and everyone else got to come say hi before they were rushed away. All total I was in recovery for 5 ½ hours before I was finally moved to HOB 305 at almost 7:00pm.

Never had I been so grateful to be in a room. Brent and Carly were waiting for me, with a huge sweet tea. I was starving because I hadn’t eaten in the last 24 hours so the nurse promised to get me something to eat, but it took her forever so I wound up eating some leftover baked potato that Brent had brought. Finally around 9:00pm the nurse brought me some chicken noodle soup and I thought maybe I’d died and gone to Heaven! LOL After I’d eaten the nurse came by and gave me some Percocet and Morphine and I could finally sleep, which I did in about two hour intervals. I was unable to get out of bed on my own so I’d have to wake Brent to help me to the bathroom but I slowly started gaining strength. Turns out I had 17 staples in my head, about three stitches behind my ear, three stitches in my neck and some Dermabond in my navel. There were NO incisions in my belly and I was thrilled! They had been able to do that part laproscopically so I felt very relieved, not to mention lucky just based on the horror stories I’d heard. Unfortunately when the nurse brought me my pain meds at 4:00am she put them in a little too fast and I became violently ill. The poor tech had to come in and change my entire bedding and my gown at 4:30am and I was miserable.

After what I’d consider a decent night’s rest, we woke up early the next morning when my mother and Christine arrived. They visited for a while until my neurosurgeon came in and gave me the greatest news ever – I could go HOME! All I had to do was have an x-ray to ensure placement of the shunt catheter in my belly and I was a free woman. So about 24 hours after having major brain surgery, I went home! I made a whole bunch of phone calls and wrote a few emails on the way and was ever so glad to be in my very own bed. Getting comfortable was definitely a challenge but with enough pillows I was able to prop myself up and rest. That was on Wednesday, and by Friday I was ready to get out of the house. Somehow I convinced Brent to take me to Target, where I snagged a new comfy robe and some ice cream. Come Sunday I was feeling really great, still hadn’t had a headache and I was recovering very nicely, so we decided to make a short trip over to Home Depot. I picked out some new planters and we got some granules for the yard and came home.

While Brent was fixing dinner Sunday night I was laying on the couch with the computer in my lap playing on Facebook. When I moved the computer from my lap I noticed that my shirt was wet and couldn’t figure out why – I hadn’t been drinking anything super cold that could’ve dripped. From the placement of the wet area of my shirt over my navel it almost appeared the fluid was leaking from the incision in my navel, but I couldn’t be entirely sure because the shirt was dark purple and I couldn’t make anything come out. This was the first time I became nervous since the surgery. Something in my gut told me that it wasn’t right and so I called the neurosurgeon, who suggested I call the general surgeon who’d placed the catheter in my belly. I knew he was Dr. Taylor but for the life of me couldn’t figure out his first name so we just made the decision to travel back to Dallas and visit the emergency room, just to be on the safe side. We arrived sometime after 8:00pm and proceeded to wait for over 3 ½ hours to be seen. In the meantime the nurses on staff were trying to determine what was going on, and I told them that I thought there was spinal fluid leaking out of my belly from the catheter. They were absolutely clueless about the disease I had as well as the shunt, and even though they could see that when I leaned back fluid poured out of the incision, they deemed my case non-emergent and put me at the bottom of the list. This made me incredibly upset and I had a falling-out with the nurse at the front desk, as I couldn’t understand how I was non-emergent when I’d just had major brain surgery five days prior and was leaking a clear fluid out of one of the incisions. I begged them to look at my file and find my surgeon’s name, which they refused to do. Finally I called my neurosurgeon back and his amazing nurse Peggy got in touch with me (keep in mind this is after 11:00pm on a Sunday) and told me to have the nurse contact Dr. Coimbra immediately. Do you think his happened? Nope! I was finally put in a room for about ten minutes, given pain medicine and sent back home to call my doctor in the morning. This would prove to be a big mistake on the part of the emergency room staff.

More to come, KC

Apr 19, 2010

A Date with a Shunt

When my neurosurgeon’s nurse, Peggy, called me this morning it really hit me: I’m having brain surgery, and I’m having it soon. Something about that call really sort of freaked me out.

Next Tuesday, April 27th at 7:15am I’ll be going under the knife. While this isn’t my first time to have surgery, this is the first time I’ll ever have to stay overnight and to top it off I’ll spend a day in the ICU. This may be the biggest freak out for me – that, and the fact that I’ll be in ICU is because they’re drilling into my brain! Are my headaches really that bad?? I think I have one just thinking about this! But alas, I know that they really are bad and getting worse and this truly is my only option at this point.

The procedure itself will take about 3 – 4 hours from start to finish. Dr. Coimbra will make an incision above and slightly behind my right ear, where he’ll drill a hole in my skull and insert a shunt catheter into my ventricles. From there a distal catheter will be run under my skin down my neck, through my chest and into my abdominal cavity. This will allow the excess spinal fluid that I produce to drain into my tummy and hopefully help reduce or even eliminate my headaches. At the very least it will restore the vision that I have lost. After all is said and done I’ll spend Tuesday in the ICU and then on Wednesday I’ll be moved to a regular room and hopefully be sent home by the evening.

Another freak out for me is my hair. I love my hair, and the thought of them shaving it off is frightening. Today when I asked Peggy about it, she said to not be shy about telling the nurses not to get razor-happy, and that they should only shave off a patch about the size of my palm that can be covered up with my remaining hair. I guess I’ll know the real damage when I wake up.

So that’s it! I have a lot to do between now and then and making sure that my house and my husband are prepared are number one. Brent will be taking off with me next week and I’m very grateful for that because I will need him. It’s going to be difficult for me to stay still and inactive but I will just have to tell myself I have no choice. Maybe, if I’m lucky, I’ll catch up on all that sleep I’ve been missing lately.

Love, KC

Apr 16, 2010

A Means to an End

Today I met for the first time with my neurosurgeon, Dr. Coimbra. I will admit that Brent was unimpressed, but we’ll get to that later. As soon as I knew who I was seeing a couple of weeks ago I began Googling everything I could on him – and to be honest, what I found was 50/50. For everything I read he is incredibly skilled in his profession but his bedside manner is, well, lacking. Despite this fact I made my appointment and decided to give him a go.

Beside manner is definitely an issue – but I can attribute it to two things I noticed about him: he appears to be very shy, but he also is damn good at what he does and he is very upfront and honest. This was Brent’s problem with him, he didn’t think that he was very approachable and he was very cut and dry. For me though, I thought it just fine. Here’s why: I’m not interviewing candidates for best friend here. This is a man who is going to cut into my brain and hopefully eradicate my headaches for good. Who cares if he’s shy, he’s a stud in the operating room and that’s all that matters to me. The man taught at UT Southwestern for almost two decades and has written and/or supervised so many studies on shunts it’s amazing – not to mention the number he puts in on a regular basis. This is the guy I want in my corner, and the rest will work itself out.

So that’s the verdict of today: both Dr. Coimbra and Dr. Herzog believe I’m an excellent candidate for a shunt procedure given my history of unsuccessful lumbar punctures and drug intolerance. More specifically, I’ll be having a VP (ventriculoperitoneal) shunt placed, which will go in just above my right ear with a catheter leading from it down behind my ear and down my right side into my stomach. It sounds scary and it is, a little, but I’ve researched my little heart out and I know the risks involved – but more importantly I KNOW that this is what must be done in order for me to have the chance at a “normal” existence with no more headaches.

Brent hasn’t come to terms with this yet and I don’t blame him, but I know it will come with time and right now he’s just worried sick. Next week I should hear from the surgeon’s office regarding scheduling but I have no clue how soon this will take place – my guess is by the end of April. I do appreciate every single one of you who have said an extra prayer for me and my family, we are truly blessed.

Stay tuned for updates, and in the meantime enjoy this little bit I found on the procedure. Oh, and please, if you or someone you know suffers from this dreadful disease or you'd just like to learn more, check out the IHRFoundation, the only organization in the world dedicated to finding a cure for this disease.

Love, KC

Apr 15, 2010

The Eyes Have It

Yesterday I meet with my neuro-ophthalmologist, Dr. Harrington, to follow up from my recent OCT & VER tests. I was very anxious leading up to the visit because I knew that I had problems with my eyesight and I was in fear of needing the optic nerve sheath fenestration – where they cut a slit in your optic nerve to allow the pressure to drain out behind your eye. However when I got there he actually had good news!

He confirmed that I have bilateral papilledema – which is swelling of the optic nerves in both eyes. That being said, he said that he didn’t want to go forth with the ONSF surgery unless my neurosurgeon thought it necessary. You see, the ONSF has a 50/50 success rate and for some people it helps – but for some it does nothing. In Dr. Harrington’s opinion, if Dr. Coimbra deems it necessary for a shunt (which he believes he will) then the shunt will fix the papilledema and there’s no need for two procedures. Can you say YAY!?

So tomorrow I meet with my neurosurgeon, Dr. Coimbra at 10am. Hopefully this will be one of the last appointments I have to endure for a good while. I’m still having daily headaches and my vision seems to be getting worse, if that’s possible.

On a better note, this past Monday was my husband’s 26th birthday and we celebrated by spending the day at the Fort Worth Zoo. Last year we took LB for his 2nd birthday and it was amazing to us to see how much he’s changed in that time period. You notice it, subtly, but when you look at pictures it’s night and day. My little man is growing up too fast!

Until next time, KC

Apr 8, 2010

Playing Catch-Up

I’ve been a bad blogger this week. There has been so much going on and I just haven’t had the time or the energy to get it out, so here goes.

Last Thursday, on the wonderful April Fool’s day, I had my second lumbar puncture done. Going in I didn’t have too bad of a headache but I was very anxious to get it done and have three glorious days like I did the first time. However my body had other plans, apparently. Waking up from the anesthesia was a lot more difficult and I really felt drugged, not to mention that my headache was WORSE! My opening pressure was also higher this time at 390mm/H20 and so my best guess is that my body was adjusting to having so much spinal fluid taken out. When we got home I actually took a really great nap, about four hours and I think it was because I got to sleep on my side this time. The nurse said that as long as I kept my legs straight and put a pillow between them I’d be fine so I did and it made a tremendous difference.

When I woke up Friday morning I was fully anticipating no headache but I was sadly mistaken as it was worse than Thursday. Hoping that it was a spinal headache I spent most of the day in the bed but laying down didn’t seem to help; I was also suffering from what I assumed to be sinus/allergies and though that could be the cause of the headache so I took Sudafed all day. Nothing helped! When the doctor called to check on me she suggested I drink all the caffeine that I could but since we don’t keep it in the house I was screwed and had to wait on Brent to get home to bring me some. My mother kindly reminded me that I could drink coffee so I made a whole pot, added sugar and cream and put it in the fridge – managing to consume two quarts of coffee in 24 hours.

Saturday morning was still worse and to top it off the mild fever I’d run all Friday night was creeping up which made me pretty nervous. Tired of being cooped up in the house I ventured out to Wal-Mart in the morning and got stuff for Easter but it really wore me out. After I got home I sat on the couch and colored three dozen eggs and watched Discovery Health all day, feeling worse by the minute. After Brent got home we decided to go back to Wal-Mart for some Tylenol as my fever was up to 100.9 at this point and if it hit 101 I was to call the doctor – and I didn’t want that. I was really hopeful that I would feel better Sunday morning because I wanted so badly to go to the Easter service at church, and I had a ton of cooking and places to visit. Brent put his foot down though, and said he wouldn’t wake me up to go and if I woke up on my own we’d do our thing.

I woke up at 10:00am – church started at 9:30am. So much for that. I still felt like crap and was trying Sudafed Sinus/Allergy as well as prescription decongestants because I could NOT breathe out the right side of my nose if I sat down; I was fine standing but as soon as I sat all bets were off. Brent had put a lovely brisket on the smoker the night before and so I got up, showered and started cooking for his parent’s house. We left for my Dad’s house about 1:15pm and had a great time with family and enjoyed awesome food. My new baby cousin Landon stole my heart with his Eskimo hair and I just wanted to gobble him up! We both realized how much we still want a baby and thoroughly enjoyed playing with little Landon. After that we went to Brent’s parent’s house and ate even more food and watched The Blind Side – what an amazing movie! We didn’t get home until after 10:30pm Sunday and I was exhausted.

I didn’t have a headache Monday or Tuesday, just pains, but it was back on Wednesday. We broke down and bought a ceiling fan on Monday and Brent and I installed it – twice – and have been so happy to have it as we like our bedroom cold. Tuesday I called Dr. Herzog’s office asking for the name of the neurosurgeon I was to be referred to and found it would be Dr. Caetano Coimbra. Can’t find much information on him but they should be calling by Friday to schedule my appointment with him and I am very excited.

So that’s pretty much it. My headache is back in full swing, Wednesday sucked royally and Thursday is headed that way too. I am so tired of waking up feeling like I got hit by a truck, I just don’t know how to fix it. Sleeping has been a real challenge since this LP because my back is still numb; it doesn’t hurt exactly, but it feels like someone is pushing really hard against that expanse of my back and it’s very uncomfortable.

For the good news: LB will be here Sunday! This week will start our two weeks on / two weeks off routine. We will exchange him every other Sunday so that our time will be shared equally and we can see him as much as possible until he starts school. I can’t even begin to explain how excited we are about this. Monday is my husband’s birthday and so we are taking the day off and spending it at the zoo – weather permitting, since now it’s supposed to rain. Plus, it’ll be a treat for LB since he’s having to have another CBC done that morning and will most likely hate me for a while.

It occurred to me that I have failed miserably on the promise of posting pictures so I need to get on that. Maybe I’ll figure out how to post an extra tab with just pictures.

Until next time, KC

Mar 30, 2010

It's Not What I Can See, It's WHERE

So a quick update about my visit to the neuro-ophthalmologist yesterday, because my eyes are still killing me tonight and I really just want to sleep it off.

I met with Dr. Harrington at TOPROSA and the first order of business was a field vision test, which is standard procedure. Basically you stare at a tiny dot and click a button every time you see a flash of light. When I realized I wasn't clicking very often I figured that I was in trouble, especially when I seemed to be clicking a lot more for the left eye. Back in February when I visited my optometrist for new glasses I had expressed concern about my field of vision going black in the left eye while staring and was told this was normal. Turns out, I was correct in thinking that it wasn't. By the time I had finished the test, almost 30 minutes later, my eyes ached and I knew I had failed that particular test.

Now let me say that I have worn glasses since I was seven and contacts since I was eleven so in all honesty I don't really know what it's like to have clear vision. Every time I started to get fuzzy I just saw the regular eye doctor and got new contacts/glasses. About 2 years ago or so I noticed that my contacts always seemed dirty, no matter if they were a new pair and I even had that sensation when I had my glasses on. This was due to my astigmatism, I was told. Wrong. I discussed this with Dr. Harrington and he said that was classic for papilledema, which is a swelling of the optic nerve caused by the excess spinal fluid built up in my brain - which is also causing my headaches.

He did a few more exams, once numbing my eye with these yellow drops that stung like crazy and then dilating my eyes twice to get a good look at my retina and such. He never told me what he saw, only that he wanted me to have an MRI done of my eyes and I have to take two more field vision tests down at Baylor University Hospital in Dallas. So tomorrow I have the MRI and then Monday I have the other tests. He basically explained everything I already knew about the swelling and we discussed an optic nerve fenestration shunt, which essentially drains the excess pressure from your eye into the fatty tissue behind the eye. From everything I've read it's a very common procedure for pseudotumor patients and pretty easy. If that's the route I take, I'll be anxious to see how much better I can see.

Today my eyes have ached because they strained so much yesterday but I did manage to get my contacts in. Between that and all of the staring at the computer I did today it's no wonder they hurt; imagine the worse sinus headache you've ever had and multiply it by 10 - that's how it feels.

At any rate, that's what's going on now. Thursday morning I have my repeat lumbar puncture and I can't wait. Sweet relief!

Love, KC

Mar 26, 2010

A Not-So-Good Day

Not-so-good is an understatement I suppose. More like IT SUCKED. I was rudely awoken from my sleep at 1:15am with a throbbing headache very similar to the one I had on Sunday. Only this time it was accompanied with horrendous nausea and for the life of me I couldn't fall back asleep. After tossing and turning for two hours I finally got up to use the restroom and that only seemed to intensify the throb. So two more hours in and I was still awake so I begged Brent to get me an icepack from the freezer. Normally that would help at least a little bit but no such luck. Finally just before 6:30am I woke him up and told him that I thought I needed to go to the emergency room - I was beyond desperate at this point. We got ready and I sat in my closet on the floor crying trying to put on my boots because I felt so ridiculous.

It was decided that we'd go to Baylor Dallas instead of a hospital in Fort Worth because I knew that my neurologist was on the board of directors there and I really hoped that would get me the help I needed. I didn't think I was going to make it there, I was soooo nauseated. When we finally arrived about 8am they checked me right in and as I'd been warned I got a "you have what?" when they asked why I was there. After explaining it to no less than six people they sent in a nursing student to give me my IV.

Now I know they have to learn somehow but let me tell you this poor girl was all nerves, couldn't find a vein in my right arm (even I can do that) and when she got to my left arm she butchered me. Poor Brent, he couldn't even watch. At any rate they gave me 2mg of Dilaudid and that really seemed to help - I'd never had it before but heard a lot about it on the DailyStrength board I've come to love. Only downside was that it seemed to make my nausea worse so they brought me something for it and couldn't get it in fast enough, I'd had nothing to eat so dry-heaving into the little blue bag was almost worse than actually throwing up. Whatever they gave me didn't work and so I really got sick, all over my bed. This frustrated me because we had to call three times to get a clean sheet but it turned out no one was ever contacting my nurse.

As soon as I got sick the Dilaudid wore off and so they gave me 2mg more and the cycle repeated itself, this time with Zofran for the nausea which still didn't work. My pain level was down to about a 7 so I felt okay to go home if they'd just keep me from throwing up a fifth time, so they said it was okay to take more Zofran and Darovcet and I got to leave about 3pm. Riding home was horrible but we made it and of course, when I got home I couldn't sleep so here I am. :-)

In the midst of all this I did manage to call both my neurologist and my LP doctor. Thankfully I'll be getting another lumbar puncture at 8am on Thursday and I am so ready, even if it only helps for a few days. The hope is that this one will reboot my system into recognizing what a normal CSF pressure is, otherwise I'll meet with a neurosurgeon to discuss the shunt surgery option. I have to say that the pain that I had Sunday and today seemed to be the worst yet so I hope it wasn't caused by the LP.

Sorry if this rambled but I am drugged and tired and hungry at this point. Let's just pray that tomorrow is a better day.

Love, KC

Mar 24, 2010

A Definitive Diagnosis

Yesterday morning I had my follow-up with Dr. Herzog, my new neurologist. Actually we met with Josie, one of his assistants, and she was equally great. We were a little late because of traffic so it took us almost two hours to get there. I have been incredibly nauseated since Sunday and so riding in a car is not fun for me at all.

Speaking of Sunday, it was horrible. We had to take LB home which is bad enough but I woke up with a headache. Well Saturday I woke up with a headache and severe nausea so I took a Zofran and went in to work at the store. The headache never got any better or worse but the nausea let up just a smidge so I could go to my baby cousin Jack’s first birthday party. We got to bed early Saturday night after a rough evening with LB and I didn’t sleep very well, hence the Sunday morning headache. Like an idiot I chose to drive the entire way to Perry, all 4.75 hours of traffic when I knew I needed to pull off but couldn’t find a good on/off exit. Brent wasn’t happy with me.

When we finally got to Perry and when I got out of the car I was swimming. I took LB to use the potty and as soon as I squatted down to help him it felt like I was hit with a hammer. It’s bad when a three year old asks if you’re okay. When we finished I ordered some sweet tea and sat down at the table so we could discuss visitation with LB’s mom. We didn’t wind up leaving until 5:30pm and I could’ve sworn I was dying. I know I can’t die from this but I wasn’t sure that I couldn’t have a seizure – that’s how bad I was hurting. No clue what a seizure is like but that had to be the next step, and I refused to take pain medicine for fear of a rebound headache and besides that shit doesn’t work anyhow. I strongly considered having Brent drive me straight to the ER at Baylor Dallas and begging for a lumbar puncture but felt bad about leaving the dogs longer than necessary (my priorities are too motherly). After some meditated breathing I finally dozed off.

Monday morning was the same scenario, extreme nausea but a slightly less painful headache. I made the drive into work and after walking into the office I became extremely dizzy. This continued on all day until I really got scared at lunchtime, too scared to drive and feeling too weak to even make it to the deli downstairs. So I called Brent and begged him to come get me, and my wonderful husband did just that. Driving would not have been safe for me or anyone at that point. We drove home and I rested on the couch for a bit while he ran an errand and then we took Stormy to the vet for her shots. It was miserable. We went back home and I tried to sleep, incredibly anxious for my appointment the next morning.

Back to yesterday – Josie confirmed what I’d been suspecting since early February. I have pseudotumor cerebri or more correctly known as idiopathic intracranial hypertension. In laymen’s terms my body is fighting a brain tumor that doesn’t actually exist. I have an abundance of spinal fluid that is creating undue pressure on my brain and causing immense pain that medication won’t touch. We were really hoping the relief from the lumbar puncture would’ve lasted longer than it did.

So what’s next for me? Unfortunately I am unable to take the commonly prescribed medication, Diamox, because of the adverse reaction I had to its sister medication, Topamax. Diamox is much stronger than Topamax and it’s just not considered safe for me. That leads me to have another lumbar puncture, a fact which I am very excited about. I can smell the relief already, even if it’s only for a couple of days again. Also, I’ll meet with a neuro-ophthalmologist on March 29th to have my vision tested and make sure my eyes aren’t in trouble. After that I’ll meet back with Dr. Herzog on April 22nd and he will refer me to a neurosurgeon to discuss possible surgery.
Throughout all of this I have been optimistic. I knew what was wrong before the doctor confirmed it so I’ve had time to do a lot of research and come to terms with it. Honestly I feel pretty at peace with the entire thing – I know my options and what the limitations are. It can be a lifelong battle but I will prevail. At this point I will do just about anything for relief. There is an awesome support group on DailyStrength that I have found that have been wonderful, particularly one girl who lives close to me and is about the same age and has been through hell. Her story is very inspiring and she is so strong. While I certainly hope that surgery can be avoided it’s almost a certainty and I’ll just deal with it when it comes.

Love to all,

Mar 16, 2010

And They're Back . . .

. . . with a vengeance I might add. After my lumbar puncture on Thursday morning I did not have a headache at all, until Sunday. Even then they were just little fingers of pain that came and went, never a full blown headache but just letting me know it was still around. So when I woke up yesterday morning I was not expecting to have another headache. It wasn't as severe as they tend to be but just aggravating enough and by the end of the day I was pretty miserable.

When I woke up this morning, it was like I'd never been away from the pain. Nausea had returned, I could barely stand, so I ran through a quick shower and hopped back in bed for 20 minutes willing it away. Even that didn't help, so here I sit at the office frustrated and squinting at my screen and staying as still as possible.

Might I add that the fact that I am trying to get my profit sharing finished ASAP probably isn't helping?

Tonight I go for my sleep study and I'm not looking forward to it. For one I can't sleep without my husband, and secondly I'm very used to hearing the baby monitor at night so I never sleep deeply. Maybe I can talk him into calling me, putting it on speaker and just letting it run all night. Desperate times call for desperate measures, after all.

Love, KC

Mar 11, 2010

Testing, 123

Today I finally had my lumbar puncture done. The one that my old neurologist said was not necessary and my new one wanted done first thing (I knew I liked him!)

We arrived at the Swiss Avenue SurgiCenter at around 9:10am and were both a little skeptical at first - the building looked old and run down and like no one had been there in years, but as we rounded the corner it was a new modern building that was much more comforting. They whisked me right in and checked my blood pressure and oxygen, which was a little lower than normal so they immediately made me put those stupid things in my nose. Ugh. I got changed into a gown and little puppy feet socks and settled back, answering the same questions three times for three different nurses.

When the time came for my IV, I was really hoping for it to be in my arm and not my hand, but no such luck. I didn't even get numbing medicine, and then she didn't think she got the needle in the vein that was so large even I could have gotten it and proceeded to wiggle it around!! Agh!! Finally she got it in and taped down, in the process causing me severe discomfort. The anesthesiologist came by and I told her how I always got sick after going under so they gave me some Zofran and wheeled me to the OR. They had me scoot over to a different table and lay on my left side, and that's the last thing I remember!

I woke up about a half hour later and felt wonderful, the best I've ever felt after going under. I sat up and talked to the nurses and drank my tea, waiting for them to let me see Brent. Instead, after about a half hour, I was allowed to get dressed and leave. It was so cool. We drove home and here I sit, feeling great and just a little stiff from being on my back all day - and extremely bored!! Oh, and I have a tiny cute little bandaid, right in the middle of my tattoo.
So, the good news - my opening intracranial pressure was 360mm/H20. The normal acceptable rate is 200mm/H20, and anything over 250mm/H20 is considered high. They drained out 160mm to make my levels normal. My levels were well over what is considered high and just confirms what I've thought all along - Idopathic Intracranial Hypertension. Doesn't sound like good news? Well I think it is, because it means I have a diagnosis. To me, that is a blessing.

We'll see Dr. Herzog on Tuesday, March 23rd at 8:30am. I am so excited to hear what my next step is.

Until then, KC

Mar 5, 2010

The Migraine Saga, from the Beginning

I’ve had headaches for as long as I can remember. My mom thought it was probably just my vision, because I’d been wearing glasses since the first grade with my eyesight constantly declining. And honestly, that probably was part of the problem. I can first remember them being particularly bad in the fourth grade, when I’d ride the school bus home in the afternoon. It was hot in Texas up until November sometimes and I was the last kid off the bus, so an hour of riding with the windows down on dirt roads did not help me. I’d come home nearly every afternoon with a headache, and my mom would explain it away as growing pains or my eyes. I think that maybe she thought I was becoming a hypochondriac because of how often I complained, but it hurt. One particular incident, when I was maybe 13, we’d been at the pool in Gainesville swimming during the summer and for some reason as we were driving home that afternoon I was hit with one of the worst headaches I remember of my teens. We were driving southbound on I-35 and the sun was directly above me, and the pain was unimaginable. I thought I was dying. Looking back now that was probably the first migraine I ever remember having, though I didn’t know it at the time.

When you have headaches, at first you don’t think to document any sort of pattern. I was a kid and headaches were my “normal”. As I got older they continued and doctors thought that maybe my sinuses were to blame, along with my eyes still. It wasn’t until 2004 that I was first diagnosed with migraines. My doctor at the time thought they were probably stress related, as I’d been recently divorced, working full-time an hour from home and I was barely 19. She gave me a prescription for Relpax and told me to relax. Taking that medication was an experience that I will never forget. I’d gotten home early and was going to cook pork chops for my mom and stepdad for dinner. It probably wasn’t 30 minutes after I’d taken it, as I was putting the pan on the stove, I felt like someone had dropped a 100lb weight on my head. My head was crushing my neck into my body and I couldn’t even stand up. Somehow I managed to make it to my bedroom where I lay crying for the next two hours. When my mom came home finally, I don’t think she fully understood the extent of the pain I was in, more from the medicine than the migraine itself. She’s always been the tough love type and as a parent now I understand that, but it’s frustrating when they don’t believe you. Just ask her about the time I broke my fingers in 2nd grade.

Over the next two years the migraines came and went, not very frequently but I seemed to always have a headache of some sort. After a really bad bout of sinus infections my primary care doctor sent me to see a neurologist. As the headaches had worsened I’d been having a lot of difficulty sleeping, so he thought maybe that was the issue. A sleep study was scheduled in June 2006 and it was found I woke up around 24 times every hour. No wonder I was exhausted! Turns out that I had sleep apnea as a result of my tonsils crowding my throat, a problem which I’d had since I was very young and my mother lobbied to have them taken out as a kid but no doctor would. So I had them out at 22, in a children’s hospital, complete with puppy feet socks and an orange Popsicle. To be truthful that was probably the best and worst experience of my life. Being the optimist I am I wrongly assumed I’d be back at work in a week; in fact, it was 22 days of sheer hell. Sleeping was impossible because my throat would dry out, and I had nothing but liquid hydrocodone and water for about 17 days, as well as excruciating headaches. And somehow I only lost 15lbs . . .

Having my tonsillectomy seemed to help for a while, probably six months. Then at the end of 2006, things went from bad to worse. For some reason the migraines came back with a vengeance, worse than ever before. My neurologist decided that it was time for a preventative medicine and started me on Topamax. Now, I’d heard horror stories of this stuff but given the small dosage I was on really didn’t think it would bother me. WRONG. Within a week, I was stuttering and forgetful; by the end of a month, I was illiterate. Seriously, my 141 IQ dropped about 40 points. Terrified I was going to lose my job I quit taking the medicine and asked for something else. That’s when I got to try Atenolol, a beta blocker that is commonly used for patients with high blood pressure. Since my pressure was already low by nature they were careful of how much I took, and at my highest took about 150mg a day until my blood pressure was dropping to around 90/60 and I was feeling woozy all the time. All in all the Atenolol worked for well over a year and then quit suddenly when my blood pressure got so low.

It is important to note that I was living the typical lifestyle of a 22 year old kid in Dallas at that time. I had started working for a band called Exit 380, I was out late and partying and drinking on the weekends and paying for it later. There is no doubt that this attributed to my headaches at the time, but I was either ignorant of the fact or just ignored it entirely. My guess is the latter.

Just before the summer of 2008 the neurologist decided to try me on a drug called Zonegran, which is in the same family as Topamax but with less side effects. Gradually my dosage increased over the months until the point I was taking 200mg a day because the headaches had returned, presumably because I’d started taking birth control again. During this time I met my husband and in August 2009 I quit taking the medication and the birth control so that we could clear my system entirely and try to have a baby. Making sure I avoided all possible triggers, I took vitamins daily and only had a few migraines through the end of the year. I had quit drinking almost entirely after a really bad case of pneumonia in January 2009 and had a glass of wine maybe every three months. Our wedding was planned for January 18, 2010 and I really had no stress in my life at all; I was blessed and blissful.

Whatever it is about the first of the year I couldn’t tell you, but it hates me. On January 3rd I’d planned a really nice meal for my husband of grilled lamb shoulder, steamed carrots and homemade sparkling juice. Within 15 minutes of eating this meal I had a severe migraine and I knew exactly why – carrots. One of my favorite vegetables and every time I eat them I pay for it, especially if they’re cooked. I grabbed my handy icepack from the freezer and retreated to the bedroom as my husband put our son to bed. Icepacks always seem to numb the pain, or just replace the pain with a different pain, but either way we proceeded to do what married people do . . . and that’s when I had the strangest headache onset I’d had for the second time in a week. It was like I’d been hit in the head with a hammer, instantly debilitating and collapsing me to the ground.

The first time this happened, my husband tried to rush me to the emergency room but I refused. After lying on my back for about 15 minutes and drinking some tea the pain seemed to subside in intensity some, but lasted for three full days. This second time set off the pattern I’m currently in. That was January 3rd, today is March 5th – and I’ve had a headache of migraine intensity every single day for these past eight weeks. Pain has become my new “normal”. I don’t know a day without a searing headache. Of course after that second incident I called up my neurologist immediately and he scheduled me for an MRA, a type of MRI that looks at the veins in your brain and specifically aneurysms. I was experiencing what was called a coital headache but they usually went away in a couple of hours, not a couple of days, and he understood that I didn’t want to be in this pain during my honeymoon. He had me taking Darvocet, Naproxen and Zofran since I’d quit taking the Zonegran to manage the pain and nausea and none of that was helping, so he gave me a drug called Maxalt that dissolved under your tongue. I affectionately called it my “I Don’t Give a Damn” drug because that’s how I felt, I could care less about anything at that point, but I still had the headache. To be truthful I was a little scared, not because I ever thought I had anything wrong with my brain but because I might be stuck with this pain.

See, that’s the thing – never once since this started did I think I had something wrong with my head. There were no symptoms of a tumor/aneurysm/clot ever, just severe pressure that resulting in stabbing, aching pain. And I was right all along. My biggest frustration with this neurologist is that all he wanted to do was medicate me and not address the underlying problems. It got so bad at one point that my husband really did have to take me to the emergency room on the night of February 9th. Light was bothering me, which was a new thing, and they gave me morphine and phenergan which did nothing. NOTHING. That stuff knocked me OUT after my knee surgery – and coincidently that’s when they decided I was allergic to the hydrocodone after it gave me a migraine that left me useless for two days. I managed to get in with the neurologist two days later and I left there in hysterics, during the biggest snowstorm Dallas has ever seen. He was two hours late seeing me, and told me I needed to try this nasal spray called Migranal three times a day for the next three days, as well as a steroid pack. This cost $100 and I was at my wit’s end. On my way home I called Texas Neurology and they got me in with Dr. Herzog, the headache specialist, for Tuesday February 23rd. I was elated.

Migranal was not my friend. Initially it made the pain double every time I took it, and after day two just quit working entirely. I was working at the store that day and happened to read an article about a young girl who’d just won Grand Champion at the stock show in Fort Worth, and about how she almost didn’t get to compete because of debilitating headaches. Immediately I grabbed up the paper and read the article, feeling a strange connection to this girl I didn’t know but related to on so many levels. Never did the article reveal what she suffered from but we had identical symptoms so to Google I went. After about four hours of exhaustive searching, I found what I was looking for, a possible diagnosis. I sat in tears in the store office, reading through this website dedicated to the disorder and frantically calling my husband to tell him. This could be it, and I educated myself as much as possible before my appointment with Dr. Herzog.

Dr. Herzog reminded me a lot of my husband, fast talker, thorough and to the point. I had gone in there armed with my MRA, MRI, CT and medical records, a list of symptoms over the years and questions to ask. He literally read through my chart and asked me two questions, the latter being about my pain level. Explaining to him that it seemed like the pain was a result of the pressure, and that it was always the worst during the morning and right before I went to sleep, and that no drugs were helping, the doctor apparently read my mind.

“Have you ever heard of pseudotumor cerebri?”

I was so relieved I thought I might cry. That was exactly what I was going to ask him about. He scheduled me for an MRV, another type of MRI, as well as a lumbar puncture and put me on a Frova bridge – I take the medicine twice a day for 10 days. When I’d asked my prior neurologist about this test, he’d outright refused, saying that it was a last ditch effort that would require me to be in the hospital for three days and on intravenous pain meds. Not so, actually. Since my MRV was clear, as I knew it would be, I’ll have a lumbar puncture, aka spinal tap, on Thursday March 11th. Yes, I will have to be in the hospital for three hours, and lie flat for 24 hours after that, but the procedure will only take 15 minutes. Even better, they’ll tell me my pressure reading before I leave and as long as it’s less than 200mm/H20 then it’s likely I don’t have the disorder. Even if I do, it’s a diagnosis and I’m happy to have one that can lead to a proper treatment plan.

So today is my last day on the Frova. I’ve seen no change except that I can’t put sentences together properly or call things by their proper names, basically I’m really confused. It’s been a constant battle that’s just been getting worse over the last couple of months but I’m sticking it out, hoping for answers. I have found such great comfort and knowledge with the Intracranial Hypertension Research Foundation and am just looking forward to the end of this saga. I know my family, and my work, are as well. Hopefully I’ll be back with news next week, but I don’t see any of it being bad news; any diagnosis to me at this point is good news.

Thank you to everyone who has said an extra prayer for me, and to the former coworker who has been a great source of hope without realizing it, my friend in the headache gallery.

Love, KC

Feb 24, 2010

Happy Birthday Buddy!

Yesterday was Lil B's 3rd birthday. We honestly didn't do a whole lot of celebrating since we had his party on Saturday where about 30 people came and played and partied it up at Bonkers. LB got tons of cool new toys and got sugared up for a good while. It was my first foray into party planning and I'd like to think I did okay, despite the fact that Brent and I were both sick. There are tons of pictures but of course they're on my other computer, as usual. If I remember I'll post some here.

Work has kept me so busy I have no time to post, so I thought I'd sneak in a little piece for now. I have to promise myself I'll keep this up.

Love, KC

Feb 9, 2010

Have You Seen It?

My inspiration, that is. I seem to have lost it somewhere. Every time I think to myself, "Ooh! I need to write!" I'm busy doing something else and by the time I sit down I have no idea what I was going to write about. My husband says that he does this to me, letting his ADD rub off on me and distracting me at the most inopportune times. With this, I have to agree. :-)

The kiddo will be back on Sunday, Valentine's Day, and we can't wait. It seems like forever since we've seen or talked to him. Trying to plan a date with your husband and then another with your son can be a lot of fun, so let's hope I come up with something good. LB is turning three in just a couple of weeks now and we're celebrating with a big party next weekend.

Which reminds me, I must get to planning.

Love, KC

Feb 1, 2010

Intro to 2010

It's February 1st and unfortunately this is my first post of 2010. Eeek! So much for my NY resolution of blogging more frequently. Let's just chalk it up to -

a) LB's extended visit
b) our wedding and
c) enjoying extended bliss minus working too much.

I'll start with a. We could not have been more thrilled to have LB for the length of time that we did. Even amidst the chaos there was such unmatched joy. I really enjoy being a parent and the time I do get to spend home with him makes me want to stay home more, so it's a constant struggle of balance. Sunday's have always been my favorite day of the week, mostly because it's the only day I don't work and I just stay home and clean and enjoy my house. But when LB was here it was so different, we'd spend our mornings in the kitchen cooking together and just enjoying our one-on-one time. I have some great pictures I'll post later.

As for b, well we are finally married and as anticipated, things haven't really changed - other than my last name. Oh and we make more money thanks to the wonderful tax brackets. Our wedding day was bittersweet, because as soon as we were finished we had to make the 4 hour drive to meet LB's mom in Oklahoma. He was excited to see her and we were just anxious to get on the road and not think about him not being with us. It's very hard and getting harder to exchange him after only a week. We feel as if we're missing so many important milestones in his life and there's just no cure for that. We've openly discussed moving to Kansas City so that we could be with him more often, but his mother tends to be on the unpredictable side so we can't follow her around the country.

And finally, c - extended wedded bliss. In lieu of spending money on traveling someplace far and away, we opted to stay in. Neither of us have spent any decent time home doing nothing and with three dogs it just seemed right. The honeymoon mostly took away the pain of LB being gone, except for when Stormy would look for him around the house and cry. That breaks us both. She still looks for him and doesn't want to leave his room if she gets in there.

So yeah, that's the extent of our month in a nutshell. We have a lot of things coming up in February - Valentine's Day, LB coming and having his 3rd birthday party and so much more. Can't believe my little buddy is going to be three. Last night we watched some home videos of last Valentine's Day, and he's grown so much. Makes me miss the little one who couldn't talk back so much. :-)

I'm going to try my best to write more often. Tell life to give me a 15 minute break every few days.

Looking forward to the future ahead,
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