Our Most Delightful Journey

Almost a year later...

2010-11-12T07:58:00.000-08:00

Pictures of the kids - at long last!

2010-01-14T15:06:00.001-08:00

Bye bye motorcycle. See you soon!

2009-09-10T17:56:00.000-07:00

Definitely a baby word I wish would last - Motorcycle = geeda-geeda. We have no idea how it came to be, but it's never changed. In this clip, Ava's bidding farewell to the motorcycle parked outside the Flipside.

Talking about our Labor Day BBQ playdate

2009-09-10T17:47:00.000-07:00

Saying hi to the animals

2009-08-04T07:15:00.000-07:00

During the past few trips to Babies-R-Us, Ava has pointed out the rhinoceros, tiger and elephant cardboard animals hanging from the ceiling. As we drove back to the store yesterday, I told her that we could see the rhinoceros etc. When we got to the store, however, they were gone. I spotted them sitting against a wall - destined for either the trash can or return mail to BRU Headquarters. After being asked by what looked like a manager-type if I needed help, I asked the fate of the cut-outs. "Why? You want them?" he replied. SURE! He moved them to the front of the store for us and we loaded the van.

Ava loves her animals and this morning bounced up and down at the gate in the kitchen to go upstairs to see the "nocenus, tigUR and edalant." Enjoy!

Spittle

2009-08-01T13:20:00.000-07:00

(see previous post to observe the evolution of the spitting)

Library books

2009-07-29T17:54:00.000-07:00

Freaking cutest kid ever! I could eat her up!

Now I know my ABCs

2009-07-29T17:47:00.000-07:00

Counting to 10

2009-07-29T17:40:00.000-07:00

Trash truck!

2009-07-29T13:31:00.001-07:00

Eden Tickle Monster

2009-07-10T11:32:00.000-07:00

Watch as Eden tries to tickle Ava's feet (and Ava tries to not lose her jean shorts)!

Helicopter!

2009-07-10T11:20:00.000-07:00

During the summer, the library offers a "meet-n-greet" series where kids can go and see ambulances, firetrucks, police officers, etc. Today was the helicopter! We picked up our neighbor Melissa around 9:20 and went to the field at the high school where the helicopter was scheduled to land at 9:30.

Two hours later, we got to see the helicopter land.

Ava did really well considering she walked about for a little while at first and then was confined to her stroller. Melissa, Ava and I sat in the shade of a big truck for a while as Joe went to get gas and fetch some water. Then Joe took Ava to the van for a while, where she played in the back with all of her toys. Just when we were about to call it quits, the helicopter appeared! Ava loved seeing - and hearing - the helicopter and also the ambulances and fire trucks in the parking lot. After it landed, we made a quick getaway to lunch at the Flipside.

June part 4: Baows! (balls)

2009-07-01T11:37:00.000-07:00

The new ball pit and 150 balls arrived! Ava had such a great time playing with Devin in his similar structure that I decided it would be fun to change out some of the larger toys in the playroom with something she could crawl around and hide in. And of course, who needs a reason for 150 balls!?

The playhut came with three structures - this one sits off by itself, housing a blanket and a teddy bear. No need to build any tents anytime soon.

People in glass houses... Should also read: grownups should crawl through ball pits as they might get stuck and need assistance being removed. Just a cautionary tale.

June part 3: Not thrilled

2009-07-01T11:34:00.001-07:00

It was an early morning for all of us. Ava woke up at 5:30am and decided no more sleeping for her - or us. She was crabby around 8:30 and she and I left the house around 9 to make a quick stop to exchange some toys at the resource center before heading to the Little Gym. In memory of Michael Jackson, I played a little Thriller. As you can tell, she was not too thrilled.

I'm sure this early morning nap had more to do with the early wake-up than Michael's talent. One day she'll learn to appreciate the entertainment value of zombies - and she too, will thank MJ for that!

June part 2: Love me, love my crocs

2009-07-01T11:33:00.001-07:00

June part 1

2009-07-01T11:26:00.000-07:00

A girl and her lion.

The kid loves her books.

Reading a story to baby and teddybear before she tells them, "Naptime."

These shoes were made for walkin'

About the house

2009-06-11T18:31:00.001-07:00

Loads of fun have been had at the new water table in the backyard. The main goal is to empty the water table of water.

Intrepid backyard explorer

"Bees!"

Ava has discovered her baby doll and makes sure baby makes it downstairs each morning.

Playing with dried beans - we're practicing scooping from one bowl to the other, but Ava prefers to move the beans by taking heaping handfuls.

What happens when you turn your back for a moment!

Afternoon at the park

2009-06-07T18:00:00.000-07:00

With a ham and cheese sandwich, peach smoothie, raisins & cheerios and juice packed, a quick stop at Quizno's for a tuna sub and Jersey Mike's for a meat sub of some kind, we headed to Lake Benson Park to check out their sheltered playground. Since our little walker is still learning how to use her legs, we had to keep a hand on her most of the time but that didn't stop her from climbing on the playground equipment and sliding down the slide.

Before we had our picnic dinner, Ava enjoyed watching the model airplane fly around a nearby field while chugging her juice from her new grown-up beverage holder (no more sippy cups!).

A quick drive from the park to a nearby office building with a small pond, a fountain and a gaggle of geese (two of Ava's favorite things) followed by a short walk through the woods on one of Joe's favorite bike trails.

A great Sunday that followed a great Saturday. No pictures from yesterday as I was flying solo for the main event (Ava and I went to see the fire trucks, ambulances, police cars and the tractor that were on exhibit as part of a 5K race held at the nearby firehouse). When asked what we saw yesterday, Ava will tell you, "firetruck.... ambulance.... peace car.... tractor" (with a little prompting: "Yes, a firetruck. Then what did you see?") And then she'll tell you that the tractor said, "Beep beep" (as the farmer climbed in, started driving, waved to her and hit the horn a few times). A visit to our coffee shop and then lunch with Joe. A great Saturday.

Here's to a quieter week than last week. Only two appointments - a nice change from the four I had last week. Quiet is good.

On the swing - not the biggest fan.
Climbing up the equipment: "Up, up, up."
"Ohh, that spins!"
Dale: "What happens when you go up, up, up?" Ava: "Down, down, down!" [going down backwards, the preferred method of escape]
Enjoying some juice and the airplane.

Feeding Teddy Bear

2009-05-20T05:51:00.000-07:00

"Num num" - that's what Teddy Bear says when Ava feeds
him one of her breakfast flakes. She loves Teddy Bear.

Ava doing her crazy thing

2009-05-17T15:37:00.000-07:00

Funny face with chocolate ice-cream.

Hanging with Daddy in the yard.

Shortly after learning to stand up by herself, Ava thought it would be fun to scale the kitchen chair.

The creature from the black lagoon.

Someone loves tubby time!

Blooming yard

2009-05-17T15:33:00.000-07:00

Baby part 2

2009-05-08T10:24:00.001-07:00

Looks like we're going to be doing it all over again! Baby #2 is due December 14th, mere days after Ava's second birthday. Maybe we're nuts but at least December won't be dull! And at least we'll have a toddler who'll be interested in the Christmas tree and lights and won't bother with a new baby so much. I may just leave up the decorations long term if they do the trick!

We're excited for Ava to have a little sibling to play with - she loves pointing out babies in books and magazines and greeting cards at the store. Guess she's just practicing!

So far the pregnancy is much the same as the first time around. Just some mild yuckness for a week or so, not enough to stop me from eating, just left me feeling blah for a few days. If I can have half the pregnancy I had last time, I'll have the perfect pregnancy (this means no PUPPS, no lyme disease scare, no exposure to miscarriage-causing viruses). Not too much to ask for!

Should be an interesting baby end of year - my sister is due the end of October, a good friend in VA is due the end of November and our behind-us neighbors are having a baby mid-November. At least I won't be alone this time around. Lots of pregnancy buddies!

Caught wet-handed!

2009-05-07T10:52:00.000-07:00

Ava was pretending to scoop Indi's food into the bowl (by picking up the food bin and placing it into the bowl). So, I opened it up and let her practice scooping while I made dinner. Luckily she's past the age of putting everything into her mouth. After a while, I looked down to see she was sorting the kibble: some in the food bowl, others in the water bowl.

Sesame Street Zombie

2009-05-07T10:50:00.000-07:00

We have a monster. One who is addicted to Sesame Street (or rather Abby, the little fairy, and Elmo [or "Eddie" as Ava calls him].) She wants to watch "Abby!" all day long. This morning she zoned out for a few minutes after breakfast. The camera's flash didn't even bother her! At least we saw signs of life after a while!

Loving Teddy Bear

2009-05-07T10:48:00.000-07:00

It seems lion has been replaced. Teddy Bear goes to bed with Ava and travels down with her in the morning. She loves Teddy Bear.

Peek-a-book!

2009-05-04T10:48:00.001-07:00

New yogurt face

2009-05-04T05:18:00.000-07:00

We decided it was time to make the plunge to self-feeding during yogurt time. The result was so funny we had to skype in the grandparents so they could enjoy it also. Ava decided the best way to eat yogurt is with her fingers - and despite the mess, she actually got most of the food in her mouth.

A little over-exposed

2009-05-04T05:15:00.000-07:00

A slight mishap with the camera captured these over-exposed but beautiful shots.

Sunday

2009-05-04T05:12:00.000-07:00

Have purse, will travel in style.
Out on our morning walk to see the geese.

The ever-present funny face.
Budding artist.
More artist.

At Little Gym

2009-05-04T05:09:00.000-07:00

This past weekend, we went to a birthday party at the Little Gym. We've been going to LG for a while now and Ava loves to explore and climb on all the equipment. Her favorite parts, though, are the balls and the bubbles ("bubbi"). I was glad to get some pictures of her here.

Playtime

2009-05-04T05:03:00.001-07:00

Ava loves doing puzzles and for her young age, is actually really good at putting the pieces where they fit.
Taking the puzzle pieces for a walk in her walker.
Taking puppy for a walk.

Out and about after a while

2009-04-30T04:43:00.001-07:00

Enjoying the fountain at North Hills. We stopped by the fountain with the creepy white statues when we got home but it was a little boring compared to the first one.
Funny face in the car. Ava loves looking at her book while we drive. Of course, it gets tricky when she wants to know what a certain picture is when we have to look at the road.

Afternoon out

2009-04-06T03:31:00.001-07:00

Loving the lion

2009-04-05T06:22:00.001-07:00

Up close

2009-04-03T18:13:00.000-07:00

The past few days

2009-04-03T18:12:00.001-07:00

Show me your funny face!

2009-03-16T17:58:00.001-07:00

Our beautiful baby. She truly lights our lives.

Where's your funny face?

Ava's weekends

2009-03-16T17:52:00.000-07:00

Visit with Grandma two weeks ago.

The following were taken during Ava's first overnight without either Joe or I at home. She stayed at home with my parents and had a great time!
Stacking is serious business!
"Schlay!" Ava loves looking at books and pointing to the pictures. At least now she's able to tell you what some of them are!
Having a great time!
Ready for lunch

Retreating

2009-03-16T11:37:00.000-07:00

Since returning from the MS retreat on Saturday, I've been mulling over the thoughts that have appeared in my head. Many of these thoughts have visited before and have been dealt with - at least as well as can be expected when dealing with a disease whose presence threatens to take over your life. Some of the thoughts are new and I'm figuring out how to deal with them.

I've been trying very hard over the past few weeks to quiet my thoughts. It wasn't until I stopped to think about it - seems silly to me to stop to think about thinking - that I realized that I think a lot, and most of the time, what I think about it nonsensical and unimportant. All this junk takes up a lot of space in my head, thus leaving little room for the more important issues that crop up from time to time. I needed to learn to be more quiet, push away these extraneous pieces of randomness and leave room for more important things.

Sadly, the junk doesn't know it's not wanted and so returned quite heavily this weekend. I've spent the past couple of days trying to sweep them back out and have managed to do so - although I may have missed a speck or two. No one's perfect!

The retreat. Nothing says fun like an overnight stay at the beach, in the middle of a cold and wintry March, surrounded by a group of 23 strangers, half of whom suffer from the same disease you're getting to know. This weekend was the first weekend retreat offered by the Eastern NC chapter of the MS Society for newly diagnosed people. That's us, and 21 of our newest friends. A brief rundown of the retreat goes like this: we met, mingled and sat through two powerpoint presentations given by a nurse at my neurology office and then we broke into two groups (those with MS and the caregivers) where we (those with MS) listened to a therapist talk though her powerpoint presentation and Joe's group (the caregivers) talked with a therapist who runs support groups for people with cancer. From all accounts, that was the best part of the weekend (sadly, our small group did not have the same experience with our therapist - moving onto the next slide when there's a lull in the conversation does not facilitate much heartfelt sharing). And the one thing missing from the experience was the super-engaging, motivational MS-person - someone who has had the disease for longer than 1 month to 1 year, who could share his/her story with a group of us who don't know what the future holds and aren't sure how to get there. I wrote that in my evaluation at the end of it all.

For both Joe and myself, the conversations we had with a small group we met up with made the trip worthwhile. But as Joe's group's therapist said: Raise your hand if you've met some incredible people here. {all hands rise}. Now, put your hands down if you wish you'd never met these people.

Guess how many hands were still up at the end of that.

We met some incredible people this weekend, people we both hope to stay in touch with, but we both agree: we wish we'd never met them.

I've often wanted to be a part of a group of people who are similar to me. I didn't expect to meet these people at a "Welcome to your disease" conference. "To your left you'll see a list of ailments you might encounter: incontinence, blurry vision, spasticity. To your right, the list of medications we use to treat such ailments." We all either have MS or share or lives with someone who has. But such as the disease goes, no two cases in the room were the same. I was one of two 34-year-olds, but the other girl had blurry vision; the other girl who had weird leg sensations also had face pain and a whole slew of other MS-related problems. I had gone hoping to find another young couple facing the same issues we're dealing with on a daily basis - should we have another child? how to deal with the risks to that child and how to know that having another child is alright, even though those bad thoughts creep into your head almost every time you think about it. There was no such couple. As we felt when we arrived, I feel still: alone. Alone (together with Joe) in experience that we're facing. I know of no one who has grappled with the same feelings. I know of people who have gone through a journey of infertility but this experience for me brings heartache and bitterness and sadness all its own. When people say, "Just do it" it's not that easy - at least not for me. Two months of trying, two months ending with nothing, and the thoughts creep back. I hear the doctor's words: Give it six months, and if you're not pregnant, come back and we'll talk about medication. Six months. Two down. That leaves me with four. I try really hard not to be obsessive but sometimes I'm not bigger than it. Sometimes I'm defeated. But the next day it all seems doable.

I'm tired of the rollercoaster.

This weekend was a replay of the emotions we experienced - and to a large part - worked through over the past two months. While it was good to talk with other people about their experiences, it was also quite negative. There's a lot of anger, bitterness and sadness and we were surrounded by it all weekend. If you've ever experience loss or hardship that looks anything like what we're going through, you'll understand. You can feel great for two weeks and then someone says something or you see something that sends you spiraling back to the beginning. For me, it can be something as simple as someone asking me how I'm feeling. If I hadn't thought that day about the MS, this question brings it straight to the front. Talking with our new friends about their and our experiences with MRIs, doctors, specialists, scheduling appointments, how we were told, our symptoms - it was like living it all over again, but this time with the anger and bitterness of 21 more people. That's some pretty powerful energy - but not the kind of energy we need to have around us.

I left the weekend wanting to keep in touch with a few of the people we met and also wanting to run and hide from the MS Society so that I'd never receive another mailing about a fun group event. No thanks, I politely decline to be a part of that group. But I'm already a part of that group - and that is still a difficult thing to accept. I am not in denial about having MS. Never went to an appointment hoping and believing that I had something that was misdiagnosed; ok, so a little part of me thought, "Yeah, it would be nice if they found Lyme disease, but I doubt that's going to happen." - so yes, I tossed the idea around but ended up catching the big, giant, ugly MS ball instead. So much for denial.

But for acceptance... Some days I'm still not sure what that means or how I'm supposed to do that. For me, acceptance is almost like settling. I'm sure you know someone who settled for this girl or that guy because someone better didn't come along and because that other person was good enough. It's really hard for me to suddenly settle for having something so unwanted and so threatening and so ugly when I'm not a settler. How do you do that? I know when I fully accept that fact that I have MS, I won't take it as an invitation to sit on my rump and just do nothing. There have been some woe-is-me, but that's natural and healthy, I think, as long as it doesn't overwhelm. I have already made more changes to my life than I had even thought about 3 months ago. I eat less gluten, I eat less dairy, I exercise everyday - I'm probably healthier now than I was the day before the first doctor's appointment - yet, I still have MS. What does acceptance look like? I know I'm not there yet - or maybe I am? I find there are times when I'm sitting quietly and I am very aware of the fact that there are 5 lesions on my brain and 1 on my neck. Those things are not supposed to be there and I have them. This saddens me greatly and I have to fight the urge to cry whenever these thoughts creep into my head. Some days the tears win.

So I try to look at all of this as a learning experience. I'm learning there are better ways to eat (and better ways to bake brownies - I've learned that a lot lately!). I'm learning that I'm stronger - and actually have arm muscles - when I lift weights. I'm learning that concentrating on what I think about so that I think about what's important makes me a calmer person. I've known all along - but am learning so even more - that I have the most supportive person in the world with me at every step, with tears of his own, embracing my disease as part of his journey. I know that I have an amazing little girl who is super smart - even her doctor said so! - and I'm learning more and more each day that there is no lovelier word than "Mama."

As I'm learning, I'm thinking more and more about things. I don't understand things of the world and this has always frustrated me. In response to so many words of encouragement from people who tell me that God is with me and will take care of me, I have wished so many times that I had a way to just give all of this to someone else to take care of. I wish I could say with all certainty that I know God has a plan for me and that I'll be alright. One of the most frustrating things with MS is that there are no set pathways for the disease. I could fine this week and in a wheelchair next year. Does that mean God's taking care of me? I don't know what it all means, but I'm still trying to find a place where I can feel comfortable with what I "know." Right now I'm not sure what I know or how I'll know what I'll know. I just know I'm confused and scared and trying to reach a place of calm and comfort.

In the meantime, I'm doing a lot of reading. This comes from the author's note from The Devil and Miss Prym by Paulo Coelho.

"...Each of the three books is concerned with a week in the life of ordinary people, all of whom find themselves suddenly confronted by love, death and power. I have always believed that in the lives of individuals, just as in society at large, the profoundest changes take place within a very reduced time frame. When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying we are not yet ready. The challenge will not wait. Life does not look back. A week is more than enough time for us to decide whether or not to accept our destiny."

I experienced that week. Seven days from the first appointment with my general practitioner who drew bloodwork to check for vitamin deficiencies to the day the neurologist handed me a diagnosis. Seven days. How quickly one little week can change the course of a life forever. One little week has changed our family in ways that are too difficult to even comprehend at times. One little week has not gotten the better of us, though. But that doesn't mean it won't try to drag us down from time to time. We're learning - and with learning comes growth. One day we'll be bigger than that one little week.

One day.

Weekend at the beach

2009-03-13T13:24:00.000-07:00

We're sitting here waiting for the 5:30pm registration to begin. Our very first overnight without Ava and we're at a hotel for a newly-diagnosed MS retreat offered by the MS Society. We're hoping to meet other young couples with children who might be in a boat similar to ours. So far, though, we've only seen one person: an older man (in his 60s) walking with a poor left leg and a cane.

I'm optimistic that this weekend won't be all misery. At least we have a sort-of beach view (if you can handle the cold wind as you lean over the balcony) - pictures to follow as soon as Joe's iPhone's email function is back to working.

If nothing else, $15 got us an evening away with food and entertainment!

Let the peeping begin

2009-03-09T06:41:00.000-07:00

The peepers (and other assorted amphibians) were out in full force last night on our evening walk. I helped Ava hear them a little better, using a trick learned while on a frog walk with fellow coworkers at NWF.

This morning she enjoyed watching the geese honking at each other and flapping around in the water (just like tubby time, I told her).

Goes to show, it's never too early to expose little minds to the wonders of nature (and as I type this, I hear "quack quack... quack quack... quack quack..." - my little duck).

Out and about

2009-03-06T17:31:00.001-08:00

Monday antics

2009-03-03T06:34:00.000-08:00

We were snowed in (well, technically, not really, but when the temp hovers at 30, do you really want to get all bundled up and drag a 15 month old outside?). Had some fun and some mischief!

Loving on her monkey balloon.

Taking her puppy for a walk.

Mischief. (Should note that said mischief occurred *not* on my watch, but rather with Daddy while I was at acupuncture.)

A true Southern lady

2009-03-01T18:08:00.000-08:00

She likes her some ribs!

Lunchtime

2009-02-26T18:15:00.000-08:00

1. Smiling for the camera
2. Eating some lunch
3. All done!
4. Cleaning up - note the direction of the clean-up: the floor!

From the past week

2009-02-26T18:13:00.000-08:00

Fun with Daddy

2009-02-26T18:11:00.000-08:00

With Mama

2009-02-26T18:07:00.000-08:00

After my birthday lunch and a trip to Barnes and Noble.

Swimming in the big tub at the hotel - the bathtub had a shutter door that opened to the bedroom. Ava had fun swimming around in the deep water, her first time in water deeper than the usual 2 inches.

Sleepy baby

2009-02-19T07:18:00.000-08:00

First bike ride with Daddy

2009-02-09T11:32:00.001-08:00

Joe was so excited! He found a great bike trailer on CraigsList for cheap, found a baby helmet for more than the bike trailer and had a nice afternoon for baby's first bike ride.

Here are the before, during and after shots.

I think we'll try again when she's 5.

Up, up and away!

2009-02-09T11:31:00.000-08:00

And she's off! Walking... no. Climbing the stairs... YES!

Mmm... toothpaste!

2009-02-09T11:30:00.001-08:00

From the iPhone: out and about

2009-02-09T11:24:00.000-08:00

What a difference a (good doctor) a day makes

2009-02-08T03:38:00.000-08:00

I've been a little quiet here lately as I fell into a lull. I had no major appointments the week of January 26th so it was nice to just relax a bit. Joe went out of town and his parents came in for a few days to keep me and Ava company. Joe came home, his parents left, my mom arrived - just in time for hell week!

Hell week - February 2nd to the 5th. Five appointments with members of the medical community. We dived in on Monday morning by revisiting the neurology practice where I was first seen back in December. This time, though, we were scheduled to see their MS specialist. I'm still not sure why we weren't referred to him immediately following my diagnosis, rather than having me waste my time with doctor #1 and having him waste his time with me. Doctor #2 was like day to Doctor #1's night. He didn't wear a white lab coat, he didn't sit far away from me. He walked in and was cheery, sat down on the swivel chair and wheeled it closer to us. He was relaxed and friendly and funny. We laughed about the book on outhouses he had on his shelf. Yes, outhouses. Something about another patient giving it to him. He made me feel very much at ease, even though I wasn't sure what to expect from this appointment.

The month of January was a very, very stressful time for all of us as we didn't know the first thing about my case. We explained this to doctor #2 and he immediately said, "So, you'd like some information!" and promptly opened his laptop and went to work pulling up my MRI images. He showed us the lesions, explained that the brain lesions were most likely silent as all my symptoms were indicative of a spinal cord lesion (the one on my cervical spine) and that the lesions on my brain were very small, the one on my spine was larger. I pointed out something below the spinal lesion and he wondered about it, so called the radiologist at WakeMed and they talked about it right then and there. Turns out it was nothing to be concerned about, but at least I didn't have to wait another week to find that out.

I told him our desire to have another baby and before I could finish my sentence, he said, "Have children. Have as many as you want." What a difference from Doctor #1 who said, "Let's discuss children if it comes to that," and then promptly forgot to mention it in the following appointment.

He did discuss medications, giving me his choice for the one I should be on (which was different from the first doctor and which would differ from the third doctor we would see). He said all neurologists will have their preferences for medication. There's no "one is better than the other" - they're all very similar and do similar things, so it comes down to a personal preference: a shot a day, every other or once a week; some side effects or none. The choice, ultimately, is ours.

I am increasingly frustrated, however, with doctors in the Western field who very quickly dismiss other ideas that have been floating around in the world. This was evident when I mentioned diet. There are several MS diets out in the world, two books (three if you count Montel Williams' book which is more a diet for overall health, even though he's had MS since 1999). One book talks about a very low-fat diet, the others are more about food intolerances and locating what foods your body can't handle (the culprits being gluten, dairy, eggs, legumes, sugar and saturated fats). I'm not totally convinced that there's not some validity in these diets and am willing to try some, but it's frustrating when the doctors dismiss ideas other than the ones put forth by drug companies. I understand that there is science behind prescription drugs, but there's a lot more than that too. Doctor #2 summed it up nicely when he said, "There's a little bit of science, a whole lot of marketing, some voodoo and some bullshit." Finally, a doctor who does buy into all the marketing of a drug. But wait. He does, in a way, I suppose. He dismissed the diets by saying to "eat a healthy diet." The diets I've been talking about are healthy but they're limiting. Doesn't mean they're bad for you or have bad side effects. It would be nice to be told sometime that while there isn't much science for these diets to be considered cures or even just considered in the mainstream, they won't hurt, so go ahead and try them. I'm looking for acceptance and I'm looking for something to do, something I can in control of. I feel completely helpless most of the time. There are no numbers to check with blood draws that will show me if my MS is getting better or worse; they only do MRIs once a year and that's a long time to wait to see if the lesions are shrinking, getting worse or finding new friends. I want some control other than giving myself a shot once a day.

We left this doctor feeling refreshed and energized, like we'd been given our lives back. There were still doubts and questions and a little uncertainty as we moved forward, but the big cloud that had been hovering above us had started to move away.

Tuesday I went to the acupuncturist. More on that next week after I actually have the treatment. The first appointment was a consultations to meet with the doctor and decide if he could help me or not. I have three appointments scheduled over the next two weeks. I'm excited to actually be able to do something to myself that will help my body.

On Wednesday, armed with what would turn out to be faulty Google directions, we left for UNC-Chapel Hill to meet with MS specialist #2, otherwise known as doctor #3. This doctor was female and as we found out when we met her, from Croatia. That has nothing to do with anything; I just found it interesting as I had never met anyone from Croatia before. She was nice but not overly; very smart but not so in touch with the human side of things. She did a quick exam, read my MRIs and confirmed the MS diagnosis. We mentioned children and she immediately said to go on medications (she could write me a prescription right then if I wanted) and said to stop medication when I got pregnant. This differed greatly from what we'd heard before (medication takes 6 months to be effective and to be off medication for 1-3 months prior to conception). What to believe!? By this point, I was about done and knew I would not be returning to see her as my regular doctor. She didn't ask us about our plans (children could something we were considering in the next month but also something we didn't want to try for until next year); in my non-medical mind, such things should be taken into consideration when discussing long-term medication, but doctor #3 didn't take any interest in our plans. I asked her about diet and a pregnancy-related study I had read about and both were quickly dismissed: "Yes, I've heard of that before" as she waved her hand. Definitely not the attitude I want from a doctor I'm to see for the rest of my life. She was very interested, though, in my blood. As a newly diagnosed person with no medication use, she wanted my blood for research she was involved in. No problem - until I saw the TEN vials they were to fill! I did my part for research and then we were on our way home.

We still liked doctor #2 but I was a little upset by doctor #3's attitude about things. I find myself quickly jumping on the path of self-doubt and questioning. #2 said to have children, #3 said to be on medication right now. What to do? My comfort in all of this is Joe. He's able to read past emotion and extract information. He also seems to hear things in appointments that I don't. I become upset (if not visibly so) when I hear something I perceive as bad. Doctor #3 said she was concerned about the lesion in my neck. Rather than think logically about this, in that the lesion on my neck is bigger than the ones on my brain, I immediately jump to the word "concern" and become nervous and scared. Sure, all the lesions are worthy of concern - they're not supposed to be there. If not for the first appointment of the week, I would have come out of the second full of dread and uncertainty about the future if I didn't go on medication right away. The truth is everyone newly diagnosed should be on medication but taking 9 months to have a baby is not going to do me serious harm - at least we can hope I'll be ok. Pregnancy tends to treat all MS patients very well and because of this, researchers are studying the effects of hormones in treating MS. I need to focus on the positive aspects of pregnancy on the MS body and not be so hung up on single words and their wide spectrum of interpretations.

Thursday brought us to the high-risk obstetrician at WakeMed for what they call a preconception consultation. I was a little worried that we'd be wasting his time but it turned out to be a very valuable appointment. The staff was so friendly and had us wait for less than 10 minutes. The doctor was very nice and listened to me babble on for what seemed like a long time. I think something I'm most glad about right now is that I don't have any other appointments to attend where someone will ask me to "describe my symptoms." This was the first doctor who didn't dismiss when when I asked about some non-routine, not widely accepted practice. My sister forwarded me some information about women with MS doing better post-pregnancy and post-surgery if they are giving units of blood or plasma after the event. This doctor said he had never heard of that but was interested. He said it wouldn't hurt me to donate blood to myself (1 unit for natural delivery, 2 units if I require a c-section), told me when to donate blood to myself (later in the pregnancy) and said he would inform my regular doctor about this also. I explained my feeling of wanting to try things that might help me. I don't expect a unit of blood to cure me, but if it might help, and won't hurt me, what's the harm in trying.

We finished hell week exhausted, having spent the better part of the week (or so it felt) sitting the car, sitting in waiting rooms, sitting in exam rooms, rehashing my symptoms and asking the same questions over and over. But we survived, and with it the hope that we can bring another baby into our family. We came out armed with more knowledge than we had a week ago and a new doctor who we both enjoyed talking with. That's not to say there haven't been tears this week. While we know more, I'm still full of uncertainty. On one hand are the platform drugs that all neurologists will recommend. One the other are many books and articles describing how MS patients seemingly stopped or significantly slowed the disease by changing their diet. I tend to be a little obsessive with some things and this is one of them. Should I cut out eggs from my diet? I've already cut back drastically on the amount of dairy and gluten in my diet, but what about eggs? What about sugar? Should I not eat that slice of cake because it has sugar? I want something to believe in and something to do - I want to be in control but I know that being in control obsessively is not healthy.

I'm not in denial, but perhaps I'm in a space between denial and acceptance. I know I have MS but perhaps I haven't fully accepted that.

But how do you accept something? How is acceptance not like settling for something less-than-idea because something better didn't come along? I feel as though I'm at a crossroads right now. Life as I knew it is behind me. To my left is a road of compulsion and wanting to be in control; to my right is life that needs living and acceptance. I know I need to turn right but I don't know how to. How do I do that?

Defective

2009-01-26T07:27:00.000-08:00

We buy things. They have warranties. If they break in a given time, we return them and get new ones (or wait a little while for the one we purchased to be fixed). We expect so much from our appliances, our cars, our cameras, our kids toys, our computers. When they break, we're angry and immediately work to fix the problem. Heaven forbid we have to wait a few weeks for the repairs to be complete. How inconvenient.

How I wish I could check myself into the repair shop to fix my problem. I'm defective, broken, but unlike a car or computer, I can't be fixed or replaced. That doesn't mean I can't try.

There is so much in my head right now. So many questions, so many unknowns. That doesn't stop me from asking and asking and asking, hoping one day there'll be some light shed on something, some A-ha moment. I know the likelihood of that is pretty slim, but until I'm told otherwise, that's the thin light at the end of the tunnel that I'm reaching for. While I don't seem to be getting any closer, with each question and each unknown, the sliver of light doesn't get much brighter, but it stays constant.

I've questioned a lot before my diagnosis; I fumbled around the unknown, looking for a place where I could feel comfortable. Was it church, some kind of spiritual movement? I was always too afraid to try. Afraid of what, I'm not entirely sure. I fear failure. I fear ridicule. I fear offending.

Fear is a big hurdle, but I'm slowly making my way to the starting line. I'm warming up, getting ready to make the big run and - hopefully - the big jump over. I hope I fly gracefully over the bar. I hope my foot doesn't catch and trip me up. So far, my feet are doing what they're supposed to do; no disease-related trip-ups. I figure now the time to make sure I can fly gracefully on my own. Time to try new things.

I had my energy healed the other day. A good friend of mine has trained in Eastern philosophy and healing. She and her husband run and operate an alternative healing wellness center out of their home in Maryland. We had a phone consultation on Saturday night. I don't quite know or understand how it works, but I know I went to bed feeling lighter than I have in a long time. Libby found lots of "sticky stuff" in my energy levels. She helped clear some of that sticky stuff. I know there's more work to be done and I know now's the time. So I tried something else new.

A friend's mother-in-law is a trained iridologist. She stopped by yesterday and read my eyes. Why not? What I find so frustrating about MS is the lack of knowledge. Doctors don't know what causes it. They don't know how to cure it. All the can tell you is to eat a healthy diet, exercise and stay stress-free. Sounds like a prescription for everyone. Unfortunately, I'm not happy with that blanket "cure." There has to be something more I can do. Perhaps I'll never find that one special thing that I'll dive into with my whole being and be happy and content to truly believe, but for now, I'm finding little pieces of lots of things to give me something to hold onto while I swim around in the unknown. I think of them as little flotation devices. They may not keep me above water all the time, but while I have them, I can catch my breath and swim a little.

So, I had my eyes read and after the session, learned a couple of things I didn't already know and a few things I did. Do I put a lot of faith into what I learned? Perhaps not, but the suggestions made can't hurt me and may just help a little. So, I ask again, why not?

I'm having acupuncture next week. Need I ask the question again? If bunches of little needles will help me feel better than I do right now, I'm willing to give it a try. I know several people who have tried acupuncture with great results, so I'm eager to try it out for myself. I'm keeping an open mind but not expecting any miraculous MS healing to happen as a result of anything. Unless I'm the medical equivalent of the immaculate conception, I doubt I'll be magically cured of MS by tiny needles, a few more vitamins, and having my energy healed. I do, however, believe that the human body is amazing but so unknown.

So, while I float around in my known of the unknown, diving deeper into the unknown unknown might just be good for my unknown known. If that means believing a little that the eye can tell us things about our bodies that we don't know yet, so be it. If that means believing that tiny needles can help with blood flow throughout our body, so be it. If that means believing that my energy has sticky stuff that needs removing, let me get my scrubbing brush and get to work. If my body is cluttered with sticky stuff, how am I going to be able to get to the foundation and make sure its strong to hold me up over time? I'm checking myself in for a little repair. Lots of little repairs can add up over time to a pretty big overhaul.

Behind bars

2009-01-22T15:57:00.000-08:00

Concerned doctor

2009-01-22T06:47:00.000-08:00

While in the middle of preparing dinner last night, I received a phone call from my neurologist (he'll remain "my" neurologist until such time as we find who better suits our needs). He had some concerns. Here's the abbreviated phone call:

Doctor: [He explained that there was some confusion on some paperwork that he received that made it sound as though I was still on solu-medrol. How many days was I on it for?]

Me: [I explained that I was only on it for 5 days, 1 at the hospital and 4 at home. I thought to myself if he looked at my file, he may have answered that question for himself. But ok.]

Doctor: [Talked a bit more about the confusion.]

Me: [Tried to clear up the confusion.]

Doctor: "How are you feeling? How are your symptoms?" ["indicates exact words]

Me: [I explained that I was feeling much better, that the right side was normal, left side was returning to normal.]

Doctor: "That's great news. Ok. Well, good luck."

Um... good luck? Seriously? There was no question as to whether we'd decided on a treatment plan, whether we'd looked into getting a second opinion. Just luck. Well, had I known that was all I needed...

Good luck.

Out after the big snow

2009-01-21T10:51:00.000-08:00

We decided it was a good day to get out of the house (after being trapped yesterday due to the BIG SNOW STORM - not sure which made more news here: the inauguration or the severe winter weather - Ha!). Roads were driveable and mostly clear. Lunch was tasty and mostly finger foods (for Ava, anyway). She's done with purees (which actually makes life more complicated as packing food for her now involves many different things cut into little pieces, rather than 3 cubes of food thawed and stirred). She's doing really with it, mostly, and today was one of the first outings with food that we didn't have to take turns feeding her something. I think she was just as happy to get out of the house and see other people as we were!

"I like seafood. Get it? See food!"
"Where's more food?"
"Where's Daddy's nose?"

Yogurt-face (works for cheese also)

2009-01-20T12:03:00.001-08:00

First snow

2009-01-20T12:01:00.000-08:00

*Not* digging her snowsuit.

Goofing off

2009-01-20T12:00:00.000-08:00

1.20.2009

2009-01-20T11:57:00.000-08:00

Silencing the mentals

2009-01-19T11:18:00.001-08:00

Things have been pretty good here for the past few days, at least since the last time I posted. Despite the pretty good, I still feel a little bit lost. I feel like I'm stuck in a pinball machine, waiting to bounce off of something that'll shoot me in a different direction. We still don't know anything with any degree of certainty, except that uncertain is the way MS works.

I'm hoping after the specialist appointments next month, we'll know a little more about my case. I'm also hoping that the doctor will go over my lesions with me; show me where they are, how me how big they are. I have the images from the MRI and would post one here, but they were depressing. I made a trip to the hospital last week to get the films from radiology. I was a little scared walking through the crowded hallways of the same place that just two weeks before had taken up so much space in my life and brought me face-to-face with so much uncertainty and fear. I held it together while I waited on the elevator for the happy family to pile in - a mom, a dad, a little girl and a new baby. They all looked so happy and I couldn't help but wonder if Joe, Ava and I would be lucky enough to experience that feeling again.

People ask me if I'm doing ok, if I feel alright. I feel fine - physically. I'm back at the gym five mornings a week (well, I say back like I went with any regularity, when the truth is I hadn't set foot into the gym in over a year and a half - I walk outside, not on a treadmill, weather-permitting). My right leg/foot is 100% normal; my left side, while not 100%, still registers cold with a small degree of pain (no more feeling warm instead of cold) but does not make me feel worse. It's what I call the "mentals" that make me feel bad.

Wondering, when I see a young family with a new baby, whether or not I'll be allowed to have another baby. Right now, that falls into the "who knows" category. The doctors we're scheduled to meet with might tell us that my condition is such that I need to be on medications right now and not off of them for any reason (pregnancy and nursing would be two such reasons to be off medications for any length of time).

Wondering, when I get hot at the gym, if I'm over-exerting myself and sweating more than I should be and whether that will cause a flare-up. When I asked the doctor about exercise, he said "that should be fine" but not to get too hot. Well, what's too hot? I don't know how to judge that, especially now if I get too hot, bad things can happen.

Wondering, when I'm falling asleep on the couch at 8pm, if I'm over-tired and pushing myself too hard (or whether I'm still adjusting to waking up at 5:45 to go to the gym). I like to nap - I could nap every day if I had opportunity to do so. But now when I'm tired in the evening, I wonder if I should have napped earlier. What is too tired? Sure, I've been a little busier than usual, driving to and from doctor appointments, waiting in exam rooms, attending meetings. But I've also been doing normal life stuff: having lunch with friends, going to birthday parties, grocery shopping, running errands, going to playdates. How much is too much?

How many children will I have? How hot is too hot? How much is too much? (I sound a little like Carrie Bradshaw - forgive me; I just finished watching the Sex in the City movie.) And when the mentals start chattering at 11pm, not knowing the answers to these questions with any certainty is very frightening.

I had my first real case of not knowing whether or not I could handle all of this the other night when Ava woke up crying at 9pm and would not fall back asleep until 11:30. By 11, I was done. I was tired (over-tired?) and feeling helpless (as nothing either of us did to soothe her worked). Then I started feeling as though my left leg was getting worse. How do you gauge partial numbness? Did my leg feel more or less numb than the day before? Was the sheet warmer on the left side than the right? At 11 o clock, the mentals are like little gremlins, pushing doubt into your head, pushing out any sense of rational, logical, sanity. All I heard was chatter; all I felt was doubt.

I ended up sitting on the side of the bathtub, sobbing. I called on my "inner Joe" to help calm my nerves, but that didn't work. Luckily the real Joe came in and helped silence the chatter long enough for me to stop crying, take a Lorazepam and drift off to sleep. I hate that I need an anti-anxiety drug to help me sleep some nights. Surely I'm stronger than that - but some nights the mentals are stronger than me. Luckily after a good night of sleep, they're silenced to a whisper. Most days I can keep them at a whisper, but some days, they all whisper together and demand some attention.

One way to ignore the whispers is to think of all the things accomplished during the day, the week, the month (we'll get to the month mark soon, so for now I'm focusing on the day and the week). Some positive things accomplished include finding a counselor who I think I can work with (I see her again tonight, so I'll know more after tonight's session whether there will be a third); finding a great massage therapist; knowing that for now I can still nurse my baby and don't have to wean her if I don't want to; learning that I'm not allergic to anything (at least to nothing that was tested) so my immune system can remain happy (at least as far as what I'm eating is concerned!); and coming closer to perfecting the brownie recipe (next time, a little more rice flour will be added to the mixture).

Playdates and phone calls, visits with friends and working with fondant, care packages and time with a sketch book all keep me grounded. I never thought much about what kept me grounded until I started feeling like I was floating away. There are still times when I feel like I'll come crashing down, but for now, I know that if I keep myself planted a little on the ground, the crash won't hurt so badly.

I'm a dork. I pulled out the Sound of Music soundtrack the other day and sang my way through several trips to and from some place and home. How can you not feel better with Julie Andrews in the car with you? I simply remember my favorite things, and then I don't feeeeeeeeel so bad!

A walking doctor's appointment

2009-01-14T11:19:00.000-08:00

So far, the next two months are filling up quickly, so if you need me to step in for you at the doctor, I suggest you schedule something soon.

Here are the list of appointments:

Today: Meeting with my new counselor
Friday: Meeting with an allergist (I figure I may as well find out if there are any underlying allergies I have that I can control now to keep my immune system happy)
Next Wednesday: Acupuncturist in the AM; MS group meeting in the PM
The following Monday: Regular "female" doctor visit. Fun.
The following Monday: MS Specialist in Raleigh
Two days later: MS Specialist at UNC-Chapel Hill
A month later: MS Specialist at Duke

Whew. I definitely need an assistant. Good thing I'm not over the 40/50 mark or I'd had to squeeze in a mammogram and a colonoscopy!

As heard in a recent conversation:

2009-01-14T07:05:00.000-08:00

Me (calling the acupuncturist): Hi, I was recently diagnosed with MS and was given M.C's name as someone to talk with...

Receptionist: Perfect. Can I call you back?

Um... Not sure what part of that was perfect, but I suppose I'll find out when she calls me back in "literally less than five minutes."

Update: Apparently the acupuncturist recently attended an MS event in Raleigh so is aware of the disease and has several patients who have MS. That's good for me, anyway!

Quick update: Progress

2009-01-13T12:12:00.000-08:00

The search for a new neurologist continues, but we're making progress and actually have appointments scheduled. Joe has taken a part-time job as my appointment coordinator (I never imagined I'd have an assistant! Go me!) and has been in touch with three of the recommended MS specialists in the area.

Apart from having to procure MRI records from the hospital to take with us to the appointments, we're well on our way to meeting with new doctors to discuss my future health plans.

We meet with the MS specialist in my current practice on February 2nd; we meet with the MS specialist at Duke University on March 16th. We're still waiting to hear from and schedule and appointment with the MS specialist at UNC-Chapel Hill. We figure April. A specialist a month. Sounds like one of those mail-order offers, only not as intoxicating as beer, yummy as dessert or beautiful as flowers.

I'm also making some strides on my own, starting with an appointment with a counselor tomorrow. On her list of specialties were Trauma, Loss or Grief, Life Coaching, Illness and Anxiety and Fears. Sounds like she'll be a good fit for all that's mulling around in my head at the moment. If I find I'm making gluten-free brownies a little more than is considered healthy, she also specializes in Eating Disorders. I've got it all covered! Her short bio reads that she will help me on my "journey of self-awareness and exploration" and improve my life and inner-self. I especially like the part that states: Life will become less stressful, more manageable, healthier. You will have a better understanding of your thought processes, feelings, and behaviors. She called me right back after I left her a message explaining my situation: I'm 33, a mother to a one-year old and was just diagnosed with MS. One of the first things she offered was that she, too, was a mother. I'm looking forward to meeting with her, knowing at least she understands the stresses involved in parenting (unless she has the only stress-free child/ren in the world, in which case, perhaps she'll offer some pointers).

In addition to taking care of my mental well-being, I'm hoping to find an allergist to make sure that there are no underlying allergies that need attention. Remember, it's all about keeping the immune system happy, so if I'm allergic to gluten-free brownies... well, then I'll have some tough choices ahead of me. Hopefully my immune system will come back with a clean bill of health and I can continue to eat healthy and focus on keeping myself stress-free, not worrying about pollen levels or whether the dish I order at dinner has butter in it.

I do need to schedule an appointment with the acupuncturist referred to me by my massage therapist. No one can accuse me of not taking ownership of my health and body. My massage therapist, my counselor, my neurologist, [my] acupuncturist, [my] allergist. What's next? Any suggestions? Email them to joe[at]daleshealthcare.com. I'm sure he can find just a few more minutes in his day for a few more phone calls!

And what are you doing when you're not making appointments? Oh, just a little light reading. The following can be found scattered around my house, on the bookshelf in the living room, next to my bed or on the table in the living room. Some for inspiration, and knowledge, others for contemplation and fun.

A little poetry to get me thinking; I've seen some of his verse in other books and it seems like the kind of visual poetry that would do me good, especially on a rainy day.

I haven't read much Poe, but I'm a sucker for the B&N collections.

I don't think this needs an explanation, although I question a book that reminds people recently diagnosed with a disease to "continue to take good care of yourself by paying attention to what you wear, maintaining good hygiene, and sticking to your grooming rituals." I haven't picked this one up in a few days.

I was mesmerized by this young author when I first saw her on Oprah a while back. (Yes, I love Oprah.) She's battling an incurable form of cancer, yet you wouldn't know it to look and listen to her. She is so full of life and has such an amazing spirit, one can only be inspired to be happier, healthier and more alive.

Another Oprah book. I happened to tune into her Spirituality episode the other day and this book spoke to me. I want to break open and grow; I figure since this is all so new to me, a manual wouldn't be a bad thing.

I loved the cover of this book (yes, I am a judger) and while I was buying the plethora of MS and gluten-free books the other day, Joe reminded me to buy something fun. I always scan telephone poles and tall trees for hawks, love watching the gold finches swoop around the yard, and always smile when I see the bluebirds, woodpeckers and the grumpy kingfisher at the lake. Perhaps this book will give me new insights as I eagerly await the return of all my feathered friends in the spring.

Bundled up for a walk

2009-01-12T17:18:00.000-08:00

Out and about

2009-01-12T08:18:00.001-08:00

Taken by a friend at the coffee shop before Christmas, I think.

Baby Zzzzs

2009-01-12T05:56:00.000-08:00

Connections

2009-01-11T16:20:00.000-08:00

Since being diagnosed with MS, what I'm most shocked at (aside from the fact that I actually have it!) is how many people I know either have MS or know someone who does. Until recently, only my brother-in-law had MS in my immediate circle of people, but thanks to Facebook, that circle now includes many more people.

Connections. It has been so helpful to me to know that so many people out in the world - whether in my neighborhood or as far away as Australia - care about me and my well-being. I'm not sure I'd have such a wide-spread support group were it not for Facebook. Perhaps I should title this entry "Ode to Facebook," but in all seriousness, I've reconnected with so many people who just fell away as we moved to the US, after I graduated from high school, left that one job, left that other job, or moved to North Carolina. I'm so grateful for all of these connections - yet, I'm struck by the irony of it all. At the same time that the connections between my brain and my body are breaking down, the connections I'm making outside my body are making me stronger.

I spoke on the phone this afternoon to a girl I knew for a little while in high school. We weren't close friends (although we tried out for cheerleading together - neither of us made it) and lost touch after high school (as I did with many friends despite all the "Keep in touch" sentiments written in our high school yearbooks). We reconnected recently on Facebook and comment on each others status every now and then. (Besides commenting on photos, what else is there to do on Facebook?) She reached out to me after I posted my diagnosis, informing me that her fiance has had MS for a year. How strange and oddly comforting to pick up the phone, call a person you haven't spoken to in almost 20 years and just talk about something that connects you once again.

Thank you, Heather, for offering to share your experience with me. It was so helpful to hear how this disease has affected you and learn what a positive impact it has had on your life.

I know I am changed, but haven't quite figure out who I am now. I look at pictures of myself and don't recognize the girl looking back. Until this afternoon, I looked at her and felt sad, knowing that she had no idea what was in store for her. I will look at her now and be happy that she was able to experience so much in her life. I will look at her now and know that she will experience as much and more in her new life. I know it's possible and with each new connection, I feel rejuvenated.

Thank you to all confirmed connections. I didn't realize just how important they were until they were needed most.

Rock bottom and being open

2009-01-11T04:53:00.000-08:00

So, I hit rock bottom this weekend. I'm not sure if I hit *the* rock bottom or one of the many levels of rock bottom, but I hit hard regardless of what I hit. There have been many tears since we first drove to the Emergency Room two weeks ago, but these tears were very different.

These tears were unstoppable. They left me breathless, drained - and very puffy-faced in the morning. They started on the drive to dinner on Friday after the Neurology appointment that me feeling as though I'd been punched in the stomach, again. And I cried, and cried, and sobbed. Lucky for me, it's been an emotional two weeks so I was able to salvage some used tissues in my bag for a repeat performance. I calmed down a bit while Joe ran into Panera to grab us some dinner. I'm not sure why, but paging through the drug information books we were given had a way of soothing me. Perhaps because the drugs will be what ultimately helps me fight MS; perhaps because I could look at them as just paper and words and ignore the emotion bouncing around my head. For a few minutes, I was calmer.

Rock bottom crept up again on the drive home and subsided a bit while we told my Mom of the doctor's visit, where the prevailing emotion was anger and frustration and not fear or hurt. And after we sat still for a while, I hit a low once more and the flood gates opened. During these moments I questioned what I'm sure everyone questions at some point in their life: Why me? I didn't make a wrong choice. I take care of myself (most days; I won't lie and say I'm a fitness or health fanatic, but I know how to eat and exercise to stay fit and healthy). I'm young. I have a baby to raise. Why me? I know the doctors can't answer that, but that doesn't stop me from asking every now and then.

I know a lot of things that don't make these questions suddenly clearly answered or go away. I know I am not dying. I know I don't have cancer. I know the likelihood is high that I'll live a normal, healthy life. I know there were worse things the doctor could have diagnosed. I know there are people worse off than me in their current health conditions. I know all of these things. I know them ten times over. Unfortunately, as many who have walked in shoes similar to these, knowing all of these things and more does not make your feelings magically silent. I wish they would. I am grateful for the fact that I am walking normally now with little to show for the fact that I couldn't walk properly last week. I'm grateful that I don't have to have surgery to remove a tumor on my neck (one of the diagnoses we faced for a while) and I'm grateful that I don't have to undergo chemotherapy or radiation. I'm grateful for all of these things. I truly am. But being grateful for something doesn't mean I have to like a lesser sentence.

I became more hateful towards MS this weekend. I hate that I have MS. I hate that my husband now has to think about MS everyday. I hate that my daughter will grow up and have to say, "My mom has MS." I hate that MS took away hot tubs. I hate MS took away soaking in a hot bath. I hate that MS could strike me at any moment without warning. I hate that I have to think about every.single.action I take so that I don't get stressed. I hate that a part of my living has been taken away. I hate that I can't just wake up, make breakfast, get dressed and head out for the day. I have to remember to give myself an injection before I leave and while I'm out and about, I need to not get pissed off at a bad driver or a slow line at a store run by an incompetent clerk. I know that doesn't sound so bad, but it's something that so many people can just DO and not think twice about. Sure, we should all live a more calmer, less angry life, but I've been put on the fast track to that life and if I don't obey the rules (I didn't sign up for, mind you), my health could be in jeopardy. I could end up with more lesions on my brain.

I have five lesions on my brain. Five fucking lesions. I'm scared. Ok. I said it with foul language - I don't have much of a sailor's tongue, but it's coming out now. Did I mention that the brilliant doctor we saw the other day (and I'm not being sarcastic: I'm sure he is a wonderful doctor, who is very knowledgeable and understands the human nervous system more than many) still has not shown me my scans. I had 3 MRIs from which they determined that I have MS. I haven't seen a single one. I don't know what the five lesions look like. I don't know where they are. I don't know if they're big or small. That scares the shit out of me and makes me so mad. I have things on my brain that don't belong there and I don't even know what they look like. I asked the doctor if we could see the images and he said we would have to call the hospital to request a CD. That made me mad too. The least I should have gotten for sitting in the MRI chamber for an hour and a half was a complimentary CD.

I hit the hard place again when my Mom left on Saturday morning. Joe and I sat and cried (I sobbed, actually) while Ava was napping. I know I've been in a state of shock the past few weeks, not quite denial, but disbelief that it's all happening. Visiting the doctor's office brought it all to the front - this is real, this is my life with a disease.

I did alright until later that evening when I was nursing Ava at 10pm. I realized that in trying to wean her a little, I'd gone a little too far and would be quite sore in the morning. So, I slowly pulled the sleeping baby from bed and offered her more milk, which she gobbled up quickly. MS brings having children to a whole new level. And that pisses me off more than anything at the moment.

Joe and I had decided we might start trying for #2 later in 2009. Then 2008 ended and all those plans went up in flames. Now, instead of having another baby being dependent on whether we wanted one, could afford one and whether the sperm met the egg, we have so much more to think about.

* will the drugs I ultimately choose cause harm to a fetus?
* what will happen to me if I go off the drugs for the 10 months while carrying a baby?
* will I be able to nurse while on the drugs or will my baby have to be formula-fed?
* one of the drugs says it's ok to be on while pregnant; how do they know damage won't rear its ugly head until the baby is an adult? How do they know??
* will having a baby cause me to have a relapse 6 months later (as our doctor mentioned at the first appointment: MS often shows up 3-6 months post-childbirth and after busy holiday seasons)
* I've likely had MS for years and didn't know, so have already had a baby while I had MS. Can I make the choice to bring a baby into our lives knowing that I have this disease?

Joe and I moved to North Carolina so that the decision to stay home and raise a family wasn't dictated by our mortgage. I hate, hate, hate that this disease now dictates - to a large part - how big or how small our family becomes; it dictates whether or not Ava has a little sibling; it dictates whether or not I am ever able to be pregnant again or nurse a baby again; it dictates whether or not Joe could ever have a son (we all know that's a 50/50 chance and we already decided we wouldn't try for #3 boy if #2 were a girl, but still...). I know Joe and I are ultimately in charge of the decision we make, but for right now, the decision is infinitely more difficult than the first time around. Are we ready? Yes. Sperm, meet Egg. Hello baby. Three weeks ago I didn't even know what Rebif or Copaxone were; now they're joining us at the table and they come with their own opinions and attitudes. And I'm so mad about that. What was such a natural thing with Ava has become so artificial, so chemical, so out of our control. I feel a little like a sperm - floating around and around, hoping like hell that I bump into something soon. Something that I can cling to or crawl onto and walk again.

God grant me the serenity... Yes, I know the prayer. I have it on my bedside table. And I know in time I'll accept all of this as just how life will be from now on. For right now, though, I'm mad and angry and want to smash things. Yesterday I wanted to smash my hand through the window. I wanted to scratch my face until it bled. I wasn't going to do any of those things, but I was experiencing emotions unlike any I'd experienced before. They make you think crazy things, and I'm sure make people do crazy things. I know my limits - at least for the time being. All windows are in tact and the skin on my face is as dry as it was the day before (side-effect of steroids, I believe). But feeling these thoughts is part of whatever journey I've been thrown on. This trip didn't come with an itinerary or even a list of scheduled bathroom breaks. I'm on a ride I didn't sign up for and there's no jumping off. All I know is that it's throwing some pretty harsh things my way - and while others may be experiencing more serious health issues or life issues at the same time, they're not on my train. This is my journey, with my feeling and emotions, my anger, my hate. And that's ok. I know I'll see a light at the end of the tunnel sometime in the future, but I don't believe it walks towards me. I have to move towards it, and while I'm on this train, that means walking through some pretty horrible stuff along the way. I can't just change cars; I have to sit awhile in each until space in the next car opens up. Then I can move forward.

Neurology appointments do not make good date nights

2009-01-10T06:43:00.000-08:00

After two weeks of riding the almost non-reality that MS has taken up residence in our home (and my brain), Joe and I were excited to meet with the neurologist. Perhaps anxious is a better descriptor. On the way to the appointment, we picked up the drug information and how it relates to breastfeeding mothers from the lactation consultant. We had a long list of questions ready to ask and have answered. And my mom stayed at home with Ava to babysit and put her to bed so that Joe and I could enjoy a nice dinner together after the appointment.

What we learned after all of this: neurology appointments do not make good date nights.

The doctor we were meeting with was the first neurologist I had met with 2 weeks ago. He was thorough, calm, soft-spoken, attentive and well-informed. We both liked him a lot when we first met with him. The doctor who took over my care at the hospital was, I'm sure smart and very good at being a neurologist, but lacked any comforting bedside manner and wore *really* bad golf pants the second day we met with him. He would come into the room, tell us briefly what was going on, what he found on the scan, and why he was ordering more tests. Then he'd stand up and linger at the door - half in, half out, almost hoping that we wouldn't ask anymore questions so he could bolt down the hall and not see us again. We were glad to know that he would not be *my* neurologist when all this was over.

Unfortunately, I walked out of the appointment wanting to find a new neurologist.

Although the doctor is still awaiting one more test result to rule out some optic nerve disease, he is fairly certain I have MS. As of today, I don't have an actual diagnosis. I have probablies, most likelies and fairly certains. I'm not expecting to go back on the 22nd and come out with an entirely new or different disease, but it would be nice to actually have a diagnosis and a discussion about what that means. Yesterday's appointment was the drug appointment where we'd meet with the doctor and talk about the drugs on the table and then his nurse would go into more detail for us as we made our decision. Luckily I brought the information from the lactation consultant as he did not know how these drugs would interact with human milk. He did remember that I was nursing, but how it felt to me was that it was more a hinderance than something positive that maybe just needed a little more consideration. The fact is I need to wean - I just wanted to do so on my terms. I've learned that life holds no regard for my terms.

Joe and I went into the appointment knowing a little more about MS than perhaps the average patient who is just diagnosed. We've witnessed it in our family for the past few years since my brother-in-law was diagnosed. We're also internet savvy and can read, so we went in understanding a little of how the disease works. Good thing, because we came out of the appointment not knowing a whole lot more than we did at the start. I know we have a lot of reading and learning to do on our own, but I do expect some amount of knowledge to come from the doctor. Afterall, they're the ones who studied and have practiced for many years and (should) know enough to answer all a patient's questions within reason. I didn't expect him to answer everything with a solid answer; I know that MS is a largely unknown illness, but I expected some anectodal information from all his years as a doctor.

When asked would I likely have vision problems since I showed delay on the vision test, he replied, "Well, you already have vision problems because you have a delay." I'm not sure it's asking too much to expect a little more in an answer. There was no, "In my experience, people who show a visual delay often [fill in the blank]" or "There have been some studies that show . . . " or even something as vague as, "I know the idea of losing your sight can be a very scary one and I wish I had more to offer, but we just don't know." I need a little warm and fuzzy. Just a little bit.

There is no warm. No fuzzy. And no positive. I wanted him to walk in and say, "Hello Dale. I'm so sorry all the tests point to MS. I know this was something you were scared of last week when I met with you. I know it's a scary disease but I want you to know that the medications we're going to discuss today have shown tremendous results on many people just like you. Oh, and how's your cute little baby?"

"I'd rather have MS than diabetes."

This positive gem was handed to us at the first appointment and to date, remains the only positive thing I've heard from either of the doctors we've met with. Thanks, but I'd rather give myself insulin each day, exercise and and follow a low-fat, low-sugar diet and not worry about the five lesions on my brain and the potential for more. Is there a form I fill out to return the MS and exchange it for something less scary? I'd even be willing to stand in a very long line if need be.

We left the appointment feeling less positive than we did going in and about 3 pounds heavier, armed with two giant packages of drug information to mull over. Enter drug marketing. Each package contained photos of healthy, young people (some holding babies), smiling, fishing, hiking. It made me sick to look at. I've always despised the drug commercials on TV. I'm not a doctor, nor am I anywhere near qualified to know which drug I should be taking - but that's where I am now. I need a coin. The two choices are Copaxone (with the tag line, "ThinkThin" - referring to the really thin needles I'll be injecting everyday) and Rebif. I think I'll go with Rebif. Their packaging materials included a free notepad, a fridge magnet and a pen! Who can pass up free stuff!? I think the next time I go to the doctor with a cold, I'll ask him to give me three antibiotics to choose from (of course, I'd need to see their marketing materials and see which uses an image of a woman who most closely resembles me before I can make an informed decision).

But free stuff *is* cool!

Something else that's nice is a parting salutation. "Goodbye and have a great weekend" would have been nice to hear, but by the time we turned around to say goodbye to the doctor, after he led us from his room to the checkout area, he was already gone.

The long drive home to follow.

Loaded questions

2009-01-09T08:02:00.001-08:00

UPDATED with answers (well, if you can call them "answers"):

As we prepare to meet with my neurologist this afternoon, we've drafted a list of questions so that we don't go through the appointment, get in the car to drive home and halfway home say, "Doh! I meant to ask about..."

Questions for the neurologist:

1. Brain lesions vs. spinal lesions - Is there a different potential prognosis? What does this mean for me in the long term? Will lesions continue to appear in the brain? Will they spread down the spinal cord? Will they shrink with medications? Will new lesions grow if i have flair ups?

A: It's better to have them on the brain because the brain is bigger. (? exactly!) Unclear on the rest of the questions.

2. How much do you know about gluten / casein free diets in helping with MS?

A: Didn't mention this after the look on his face when we mentioned acupuncture and other complimentary care.

3. Would it be wise to speak with an immunologist to learn how to help strengthen my immune system?

A: Didn't ask this one.

4. How old are the lesions? if the one is typical of MS, what are the other 4? Is having 5 on the brain bad?

A: See #1

5. What about complimentary care: gluten-free diet? acupuncture? massage? physical therapy?

A: Got a look and then "well, you seem fine now so I don't think you need physical therapy."

6. Will the transverse myelitis on the neck go away or will it always be there?

A. Don't know.

7. Was there something alarming about my case or did it present as "typical MS"? What prompted all the tests so early?

A. I believe I said MS was at the top of the list when I saw you, if I'm not mistaken.

8. Does having the visual (and auditory?) delay mean that I'll likely have vision (hearing?) problems as I get older?

A. You already have vision problems.

9. Do we need to do a dye MRI to further confirm anything or get more information that would be helpful?

A. Yes, we'll do a dye MRI in a month or two to get a baseline image of my brain.

10. Does your practice work with trained counselors who help patients with MS?

A. Didn't ask.

11. What about having more children? We know there is little, if any, likelihood that our children will inherit the disease, but are there any concerns with MS and pregnancy or nursing?

A. Didn't ask.

12. Do I need to have a repeat MRI in a few months to determine if drugs are working?

A. Will likely have one every 6-12 months from here on out.

13. Is there a database for patients to enter their medical information? Since researchers don't quite know what causes MS but have seen trends in the disease, is there an ongoing collection of such personal information?

A. Didn't ask.

Whew . . . and big sigh.

Peeling back

2009-01-08T14:59:00.001-08:00

No one ever expects anything bad to happen to them. I'm sure we've all had a friend or family member go through something that makes us wonder how we might handle their situation. Unfortunately, no amount of wondering actually prepares you for how you'll actually cope. It makes me think of sleep.

When a woman is pregnant, everyone says, "Enjoy your sleep while you can. Take lots of naps." Perhaps they've found a way to harness the power of sleep to be used at appropriate sleep-deprived moments. I know I wasn't given that special gift at any baby shower I went to. Ava was born and I stopped sleeping. I went from a nice 8-hour night to sporadic shut-eye in no time flat. I didn't know much about being a new mom but what I did know was this: No amount of napping that occurred during the pregnancy (and there was a great deal of napping) helped me adjust to the immediate lack of zzzs.

The same holds true for my current situation. No amount of wondering how I would react if a parent died or how I would handle breast cancer (both experiences friends have gone through; I don't tend to sit around wondering the worse-case on a daily basis) has prepared me for the (sur)reality in which I find myself. Two weeks ago I was healthy; today I live with a disease that will be with me every single day. This was certainly not something I could have studied for, prepared for, practiced or even really imagined.

What has surprised me a little is how I have handled it all so far. I'll admit I'm not the world's most optimistic or positive person. I try to be a "glass half full" kind of gal, but more often than not, my glass is just slightly less than half full (but see, I use the word full as I try to be optimistic rather than just saying the glass is half empty!). I try, but not always with success. When I've wondered how I would handle bad news, I figured I'd *try* to be positive but would likely find myself sinking quickly into the depths of woe-is-me. Everyone likes a little melodrama, right, and woe-is-me definitely fits the bill.

The past two weeks have shown me that you can't count on anything you ever thought. We're made up of so much more than any preconceived notion. Maybe I'm still in shock, but I haven't found myself scrambling up the hill as I try to avoid the depths of woe-is-me. Don't get me wrong - I've had some bad moments and there have been lots of tears, but I've also managed to talk about what I'm going through (sometimes with tears, other times without). Maybe I'm in denial? Nope. I don't have any crazy thoughts that perhaps the doctor will tell me tomorrow that they made a huge mistake and that I actually have Lyme disease (although wouldn't that be awesome!?). This diagnosis, this disease, this reality is what is is. What *is* a little surprising is how demanding it is, calling on all parts of me, parts I didn't even know I had.

Of course, some of the new parts I have - the five lesions on my brain (I hope to learn more about them tomorrow - do they have names? what do they like, dislike? how can I keep them *silent*?) - I'd rather not have. But no amount of wishing them away will do anything but fuel them. Remember: we want to silence them.

The other new parts are a little less definable. All I can say is "they're there." I won't say that I'm stronger or more positive or suddenly peaceful. I can say that I feel a gentle strength holding me up; a smile and a giggle where I didn't expect one; and a newfound appreciation for calm.

I'm sure as the reality sets in more concretely (let's face it, it's only been a week), I'll have to expose more of myself that I didn't know was there. I'm not sure what I'll find underneath all the layers. I'm sure some of it won't be pretty, but so far I've been very pleasantly surprised by what I'm seeing under it all.

Some green from the yard

2009-01-08T14:43:00.001-08:00

While some of our gold mops did not survive the brutal summer sun, several in more shady areas are thriving.

Strength

2009-01-06T17:43:00.001-08:00

The most important reason.

Numb

2009-01-06T17:17:00.001-08:00

Nights are the hardest. Although I'm awake longer during the day, I'm busier. I have nothing to do at night but think, starting when I nurse Ava before bedtime. It doesn't help that one of my favorite songs on her bedtime CD was playing in the earphones during the brain MRI, the one that revealed the five lesions. The loud jackhammer noise of the MRI machine is slowly lessening, but it's still there. I feel as though this disease has already taken so much from me (at least mentally) so I'm not willing to give it Clair de Lune. One day I'll hear that song and think fondly of the year that I nursed my baby and not of the MRI. But for now, the jackhammer creeps in.

Nights are the hardest. I am hateful, but even that is difficult for me right now. I feel emotionally numb. My right leg has improved greatly since starting the steroids and my left leg is starting to recognize cold as cold and not hot or pain. That's positive. But at night I hate it all. I hate not knowing why. I hate that I have a disease. I hate that I have a neurologist. I hate that come Friday we'll be discussing lifelong drug options. I hate that I don't have the feeling right now to yell out loud. I know steroids can do weird things to your body and perhaps this is part of that. I hate that while just sitting isn't what I want to do, it's all I can do at night. Part of me is afraid to just sit as this will allow the thoughts to creep in, but tonight I just feel empty. Drained.

It's such a weird feeling. I had a difficult morning as my mom isn't feeling well so I was back to being mom full-time while Joe was working. I had a good afternoon with a visit from a dear friend who traveled hours in the rain with her little girl. Ava had a short playdate before a good nap. I had some wonderful heartfelt conversation. We had delicious dinner brought to our house, complete with some yummy gluten-free mocha mousse and appple crisp. Along with that came some homemade bath salts that smell wonderful. I hate that I wasn't able to embrace all of this as enough to carry me through to tomorrow. It's not that I need more. I am learning to walk through this with baby steps. I might be fine right now and a little down in an hour - and that's ok.

I enjoyed some quiet time with Joe this evening. We left the house and went to the little cafe up the street. He had a beer. I had a decaf coffee that he said didn't deserve to be in a cup. I laughed at that. We talked a little about his work, a little about MS, but we mostly sat quietly holding hands.

I hate that Joe has to think about MS every day, but I couldn't ask for a more supportive, more nurturing, more loving person to think about this with - even if he does buy a lousy cup of coffee.

Because we need a little cuteness

2009-01-06T15:27:00.000-08:00

After a few days of a completely crazy schedule, Ava fell fast asleep while writing some important notes.
Discovery on a walk around the lake.
After a few days apart. I could cuddle with her like this forever.

Saturday in a quiet house

2009-01-03T11:37:00.001-08:00

For the first the first time in a week I can say I haven't been home much today - and not because I was in a hospital bed. This morning we started the steroid treatment early as I had to make a 10am massage appointment. The drip takes 2 hours, so I was hooked up by 7:40 and managed to finish watching The Dark Knight.

After that, Joe drove me up the street to my new massage therapist. I was referred to her by both my chiropractor and the teacher at the Little Gym. She lives in our neighborhood - couldn't be more perfect or convenient. Of course, we hoped she was good and I am so happy to report that she was amazing. She doesn't usually see clients on Saturdays but when Joe called her on Thursday and explained my situation, she gladly opened her home to me. She also gave me the name of a new doctor to try in Clayton (an actual practitioner, not a doctor in a mega-practice) and an acupuncturist, both of whom we're going to check out. All in all a great experience.

I just got home from a trip with my mom and Joe to the coffee shop for a little "normal" and then a stroll through a furniture store to look for a new sitting chair and ottoman for my new space. We're converting the "nursery room" area off our bedroom into Dale-space. A place where I can be quiet and think; a place away from baby and toys (hopefully to be used during nap time); a place to read; a place to write; a place to heal.

When I returned home and checked my email, I found a beautiful note from a new friend - my massage therapist. What a great day.

***
It was a pleasure meeting you. I hope that this process... journey... you find yourself embarking on, goes as smoothly as possible. You seem to have plenty of loving support around you - which is infinitely important. I would like you to add me to your support system. I meant it when I said to call me if/when you have the need to. Late evenings/emergency.... it's really okay. My children are in bed 8 - 8:30, and I can work after that without any trouble. Please don't hesitate.
***

Nice to know that people care - even when you don't know them. Thank you to all of you who I know care and who have showed me just how much you care. Your support and kind words and good thoughts have helped me move away from "woe is me" so much more quicker than I thought possible. I know there are still many more tears laying in wait, but more than not, I'm filled with a feeling of ease, knowing that I have so many people to lean on and call on and cry on if I need to. From the bottom of my heart, thank you.

Let the baking begin

2009-01-02T16:54:00.000-08:00

Life as I know is *not* over - I can bake, and thanks to a trip to the bookstore, I have myself several new books to add to my collection, or perhaps start a new collection.

Before you say, "Ewwww," some of these gluten-free recipes sound (and look!) sooo tasty!

IV Tree

2009-01-02T05:54:00.000-08:00

Figured we could all use some cheer as we celebrate MS-mas. Ok, so not nearly as funny as Festivus, but a little silliness can go a long way!

Who says you need style to fight MS?

2009-01-01T12:13:00.000-08:00

Solu-Medrol and shaved legs

2009-01-01T09:38:00.000-08:00

I shaved my legs for the first time in days. It was a little tricky to do considering my left leg and bum don't like cold things touching them (so leaning with my bum to the wall was out of the question) and my right foot is not very strong at the moment. But I did it. And I was in my well-lit bathroom. In my own bedroom. That made every moment of that shower feel like a little piece of heaven.

We got home last night around nine and decided on the way home to stop by at our friend's house to celebrate the New Year with them and all our other friends. We got home, spent a few minutes with my parents and then walked two houses down to the party. They weren't expecting us so it was a nice surprise. We stayed for about half an hour before I decided it was time to go home. I was standing in the kitchen and felt very hot. All that activity (read: standing) worn me out considering I'd only walked a little bit in the past few days.

I'm sitting here now with my home care nurse who hooked up the steroid IV. I've about half an hour until this does is all done. It takes about 2 hours for the fluid to work its way in. We have three more days of this until this course is finished and then no more drugs until we meet with my neurologist. I'm 33 years old and I have a neurologist. Definitely not something I *ever* thought I'd have to say. My neurologist.

It's scary. There have been tears. Breakdowns. Hugs. But on the whole we're doing ok. It's a day by day thing at the moment until we figure out how best to deal with the long term care. There will be dietary changes, lifestyle changes, attitude changes. I need to learn, first and foremost, how to deal with stress. Not better; just deal with it. I don't deal with stress very well at all and I believe that is a key trigger and reason as to why this happened to me. I don't know what it is about my body that made me susceptible to MS but I believe stress was the trigger. Perhaps if I lived a yoga-filled, deep-breathing, harmonious life in a peaceful ocean-side village this wouldn't have happened. Who knows. What I do know is that starting three days ago, we made a decision, regardless of the diagnosis, to be less stressed. We don't know how to relax very well. This week we had planned to stay home, relax, go out and do fun stuff. We ended up at the ER and in the hospital. Joe says, "We just don't know how to relax and take it easy."

No kidding.

Today has been pretty good. We had the home care nurse come by to show us how to administer the solu-medrol. That took about two hours. Then Rachel and Katie stopped by with muffins and sweet goodies from the New Year's Eve party. Then we had lunch. After lunch I decided that I was going to soak up some sun - the first sun I've seen all week. In fact, it was the first time I'd been outside during the day since Monday afternoon. Pulled up the pant legs, pulled up the sleeves and let the sun warm me up. If I had a hammock, I'd bundle up in a blanket and swing the day around. Amazing how some fresh, cold air clears the cobwebs and crazy thoughts. Clear mind. Calm thoughts. That's what I need.

Last pre-MS photo taken on Saturday
Sunshine after 3 days in a cave
Soaking up some much needed sunshine
IV line
Flowers from our friends Cate, Chris and Devin

Progress of the good kind

2008-12-31T13:31:00.000-08:00

I'm laying on my back after having had the spinal tap (having dental work was MUCH worse!) and have to lay on my back for the next 4 hours to avoid the horrible headache that can occur.

The good news is that I'm going home tonight! The case worker organized for us to have home care medication for the next five days, so tomorrow we'll have the equipment delivered and have a nurse come by to show us how it all works.

While we were dealt a pretty hefty blow today with the diagnosis, knowing I can go home in 5 hours makes even this uncomfy bed bearable!

One way to ring in the New Year...

2008-12-31T10:13:00.000-08:00

... with a diagnosis.

Spoke with the neurologist again this morning only to find that the brain MRI showed 5 lesions, one of which was pretty typical of MS. I'm awaiting a spinal tap which will be tested for specific protein bands that again would be indicative of MS. Downside to the spinal tap is that even if the test is negative, that doesn't meant I don't have MS. So, for now, we're moving forward knowing I have MS and will have to deal with this for the rest of my life.

I will be in the hospital for the next 5 days undergoing a steroid treatment unless they can arrange to have me undergo the treatment at home.

My dad is driving in, as are Joe's parents.

Now we move forward (at least forward as in out of the door and to the cafeteria. It's 1:15 and there are no signs of the lunch lady).

Wednesday update

2008-12-31T06:45:00.001-08:00

Woke up this morning to find that my right foot (the side that was fine until now) is showing symptoms of something. I can't flex my foot very fast and when I do flex it, it's weak.

I'm still waiting to hear from the doctor regarding the results of the bloodwork taken on Monday, the nerve tests done yesterday midday and the brain MRI done yesterday afternoon.

In good news, I managed to talk the nurses into skipping the 2am vital signs check. Yay. The bad news: the area where I am is soooo noisy there was not much sleep to be had.

More when we find out more!

End of day two

2008-12-30T16:46:00.000-08:00

Day two brought about new tests, repeat tests and a visit with an actual doctor!

At about 11 this morning, I started the vision and auditory evoke response test and nerve tests. First I was hotwired with lots of little electrodes all over my head and neck (and later on my hands and feet and legs).

The vision test had me looking at a little dot in the middle of a small tv/computer screen while the background (black and white checkerboard) moved back and forth. This went on for 15 minutes with the left eye covered and 15 minutes with the right eye covered. By the end of this half hour, I was so tired from having focused on the small sticker on the screen and sitting upright. Luckily the rest of the tests for this batch had me laying on a bed.

The auditory section of the tests had me listening to beeps. Simple, not too loud or invasive to the ear.

The nerve tests were a little more uncomfortable. The technician (although she was the Director of the program, so I knew I was in good hands for these tests) hooked up my hand to a conductor and then proceeded to make my fingers twitch. It felt like having electro-stimulation therapy for physical therapy... only bumped a few notches. It wasn't so much painful as just uncomfortable. The same thing was done to both feet, although for the right side, the conductor was not directly on the nerve, so it felt as though there were two sharp spikes digging into my flesh. I was glad when that test was over.

I returned to my room and had lunch with my mom who had spent the whole day with me at the hospital. Joe was home being Daddy. Shortly after we got back from eating, we saw the doctor. Yes, Virginia, they do indeed have doctors at hospitals, not just nurses and nurses' aides.

The doctor said that he'd seen something on one of my MRIs from the previous day. My spinal MRI was clean, but he'd found some transvere myelitis (TM)on the neck MRI. You can read for yourself what that means as I'm sure to botch any description. Basically there's something there but that's not the ultimate diagnosis. In order to rule out other things, like MS, he ordered a brain MRI (luckily just one - not two like I had done the previous day). If this MRI is weird or inconclusive, he'll order either a spinal tap or another MRI, this time using dye (I'm reluctant to do that one just now as I'm still nursing and the dye would require me to pump-n-dump for 48 hours. Having a baby who hates whole milk makes this is a little difficult.). So, for now I am hopeful that what I have is TM as it seems to be fairly straight-forward with no major lasting damage - as he said, it's a one-time deal. Could have even been brought about by the fever (virus?) I had a few weeks ago. A lot of the symptoms mentioned on the fact sheet I have, right down to the extreme hot/cold sensation in my leg and the discomfort on my arm when fabric touches my skin. He has not ruled out MS and says that is still a possibility, so while I'm optimistic that it's not MS, I'm not being overly naive in thinking that all is well.

I'm still stuck in this hospital bed waiting. Nothing more to do this evening but sleep (the nurse said if all my vitals were normal at 10, she would skip the 2am vital check - thank you!) and wait to speak with the doctor in the morning. Hopefully with a good night's sleep comes good news in the morning.

Indi made headlines!

2008-12-30T01:11:00.000-08:00

I saw a link on Gillian's blog when her dog made headlines for indecent shredding of toilet paper. I knew I had the perfect picture of Indi defiling AOL man, and was thrilled when she, too, made headlines!

Three thirty AM

2008-12-30T00:32:00.000-08:00

So, it's early here at the hospital and the same holds true as when I gave birth. Despite being in a hospital where there are people taking care of you, you get no rest. I didn't get to bed until about 11:30pm and then I realized that my condition had changed a bit. More on that in a moment. So, I called the nurse who talked with me a bit, with the doctor and then with me again. So, bedtime around midnight. That wouldn't be so bad, except that I knew to expect a visit from the nurse again at 2am to check my vital signs - yes, I'm still alive; no need to double check. The nurse aide came in and wasn't the slightest bit quiet about it - have you ever had someone rip open velcro while you're sleeping? That was the sound that mostly woke me up - the velcro from the blood pressure cuff. I think I fell asleep for 20 minutes after that when noise from the staff room door opening and closing woke me up. I've been laying in bed for the past 45 minutes and just decided to get up. No point trying to fall asleep on two uncomfortable pillows and a bed that adjusts to each little movement.

So, what better activity to keep me busy than blogging... I'd be on Facebook but WakeMed has blocked Facebook (probably because it's listed as a "personal and dating" site).

I know how I ended up here but it seems like a good place to document it all while it's still fresh in my mind.

On Christmas afternoon I noticed I was experiencing a strange skin sensation in my right arm. This wasn't highly unusual as I've experienced this before. I had mentioned it to a doctor who said "I'm sure it's nothing." Ok. So, it's happened a few times that I can remember (although specific times / years / place of such episodes are lost to me) but I've started to worry about it a bit. Figured I'd call the doctor and look into it after the holidays.

Later that afternoon, I was walking down the stairs and felt as though my feet were very cold. I bent down to feel and they were warm, so I didn't rush up to grab some socks. First left leg incident.

Later that night as I was brushing my teeth, I noticed as I leaned against the counter that the cabinet door felt warm along my left thigh. I thought it was odd and even went so far as to feel the door. Not sure what I was expecting to find, but at least I investigated - could have been some spontaneous combustion of the hair dryer or flat iron.

A few moments later, while sitting on the toilet (at least I didn't say "the throne"!), it felt as though someone had been sitting on it and warmed it up, on the left side.

Then I jumped into bed between the nice cool sheets, only the left side felt as though Joe had been in bed warming it up - but he hadn't.

All of those things prompted me to call my regular doctor in the morning. I ran out to the appointment early in the morning and had blood drawn. The doctor's initial "diagnosis" (if you could call it that) was consider Vitamin B12 deficiency. He ordered bloodwork to test for that, Vit D deficiency and a few other normal blood panels. He also said that if the bloodwork showed nothing, he would refer me to a neurologist for further testing.

Over the weekend things stayed the same until I returned from a walk with Joe and Ava on Sunday afternoon. For some reason, I felt as though I was walking less gracefully than I normally do. I'm not clumsy but caught myself scuffing my feet as I walked several times. I thought it could be attributed to the fact that I was wearing different socks that made my feet slide in my shoes more. When I got home, something wasn't right and for some reason I checked my leg and felt that it was partially numb - not fully as I was still experiencing the weird warm sensation (most notably while sitting on the toilet seat).

We called our practitioner who suggested a trip to the ER for a CAT scan or MRI to rule out stroke or MS.

Arrived at the ER at 3pm. Left at 9pm.

What happened in the middle was a lot of waiting, a CAT scan (which ruled out signs of a stroke), a brief consult with the ER doctor and orders to call the neurologist in the morning to schedule an MRI - again, to rule out MS or other neurological conditions.

We were lucky to get into the neurologist Monday morning (instead of having to wait until January 15th, the next available slot), so packed up the baby and hauled ass (to put it mildly - I was nursing Ava when Joe told me of the appointment time and we had about 20 minutes to get ourselves ready). Of course, he told me the appointment was at 10:15 and only when we pulled into the parking lot did he confess to bumping the time up 15 minutes to ensure that we'd be there on time! What followed next was some waiting and some more waiting.

I feel like I've spent the better part of the past two days sitting and waiting. And all this while, the brain has lots of time to go a little nutty with things.

The neurologist was very good. He was thorough and well-spoken, a little shy and understanding of how I must be feeling. He did a long exam and during that exam discovered something I had not been aware of. Although the weird skin sensation on my arm had remained the same (and continues to remain unchanged), the weird temperature sensation on my left leg had progressed halfway up my back on the left side. I only knew this as he went across my body with what I describe a medical hammer (that's what it looked like, although there was no hammering). He would place the metal hammer on one side of my right leg and then move it to the same spot the left leg and ask if they felt the same. I would reply that it felt cold on the right, warm on the left. This continued at all points up my leg until he reached the spot on my back where I flinched quite hard. Suddenly the warm sensation had turned to pain and discomfort. He was calm when he said, "That really bothers you, doesn't it?" I don't think he was expecting that reaction from me; I certainly wasn't. As I was dressing, I realized the left side of my stomach felt the same way, so I him test it the same way. Same painful flinch.

The doctor left the room for a few minutes to make some notes and make some calls. When he returned, he said he wanted to run some further tests, including two MRIs (one of my cervical spine [neck] and one of the lower spine) and some sensory tests. He also threw out the words MS and other things such as compressed discs and tumor.

His nurse called over to the hospital and found that there was a bed available for me. Rather than have to go back and forth for a few days to get all of the tests done, we decided for me to check into the hospital and get them all done in one shot. Easier said than done, though. I got to the hospital around 2pm and didn't get the MRIs until 6:30pm. They did draw blood earlier in the afternoon but neither the results of that or the MRIs will be known until the morning. I probably could have gone home had I insisted, but I'm glad I didn't. As I was trying to fall asleep, I realized that my cold right foot was causing the same painful flinch on my left leg (until then it had only happened on my stomach and back area). So, something was moving down my leg. I notified the nurse and she spoke with the doctor. I guess for whatever reason my case is not considered an emergency of any kind as he only ordered more observation (this was a different neurologist than the one I'd seen earlier in the day).

So, now I approach 2009 with

-- a few things to scratch off my list of things to do in my life: get a CAT scan or MRI - check!

-- a few hours wasted sitting in waiting rooms and hospitals

-- the feeling of what it would be like to be trapped in a confined space and not be sure you could get out (I did ok for the first MRI - 20-30 minutes of the loud noises - but there was no rest time between the two. I was laying on my back, still as could be, and the tech told me I'd be moved further back into the chamber for the second MRI. There was no time to move around a little, sit up and stretch. I went from sitting really still to sitting really still, only the second time around I started to feel really warm and towards the end, became a little panicked. I managed to snap myself back to my mantra ["I am healthy. I am brave. I am strong."] but towards the end I started to have crazy thoughts about being abandoned in the chamber due to a fire emergency or having been forgotten about by the technician. I was more than a little glad to be out of the chamber when it was all done and hope to not have to experience that again any time soon.)

-- less sleep on my own without the baby (who would have thought that possible!)

-- and much uncertainty.

I don't know what the doctor will be telling me today. I'm scared of what he has to tell me. I'm also healthy, brave and strong and need to keep reminding myself that although I've never been faced with anything like this before, I come equipped with the strength to pull through. A friend of mine who survived breast cancer told me that I have "the strength of a thousand men in my body" - I'm calling on all of them to fight with me.

Christmas 2008

2008-12-26T17:30:00.000-08:00

This year we had a full house! My parents and sister and brother-in-law drove in on Christmas Eve and Joe's parents joined us all on Christmas afternoon. Somehow, with 8 adults, a baby and a dog, we all managed to stay sane and happy! There was much food enjoyed by all - and more sweets that many of us are still enjoying! Lots of presents and (hopefully) a good time was had by all! Thanks to Karen for taking such great photos!

Christmas Baby

The happy family

With Grandad

Flying baby!

Talking with Great Granny on the phone

Who needs presents when there are bows?

With her new musical instrument and baby pram.

One of the many Etsy purchases

Name tag

Table greenery

Wine glass

From the iPhone: out and about and at home

2008-12-21T17:21:00.000-08:00

Had a busy weekend around the house and out and about. To prepare for a household of people this weekend, we spent some time cleaning the house and making room. The pantry is organized, the bonus room is ready for Karen and Pern (well, more ready than it was yesterday morning), the first floor is a little less cluttered.

After Ava refused to nap in the afternoon, we decided to all head to Michaels and Target for a few things. Had some hot apple cider at Starbucks (my only of the season - it's yummy but sooo sweet) and picked up things to make name cards for the table. Came home, ate dinner, put the babe to bed and then watched "Run Fat Boy, Run" - pretty funny!

Sunday was much the same but with a little less cleaning involved. We decided to go out to lunch today as it was the first day since all having the plague that we felt we wanted to pay to eat out and would actually enjoy it. Off to Mimi's Cafe and then to the grocery store and back to Michaels for a tin for cookies. They had none. Drove around for a while and were very quiet as Ava fell fast asleep in the car before we even got to the store. Guess that'll teach her to refuse a nap in the morning. Or maybe not!

We're only hoping for a full night's sleep tonight. We get most of that each night but for the past week or so, 5:30 has been deemed the new 7am... but is greeted with screaming. It's almost like a baby night terror (although those aren't supposed to start until around age 3), but whatever it is, listening to a grumbly baby at 5:30 - 7 is no fun. Unfortunately it's not a bad habit that we can stop. We just go to bed hoping...

Waiting for lunch at Mimi's

Sleeping baby

A very bad hair day

Ava on Facebook

2008-12-13T05:35:00.001-08:00

I think I need to get Ava her own Facebook page. Today's status would be:

Ava thinks oatmeal tastes like stinky feet!

Dale is sighing a big defeated-breakfast sigh.

Friday morning

2008-12-12T11:55:00.002-08:00

Handmade dress

2008-12-12T11:55:00.001-08:00

One year check up

2008-12-11T10:00:00.000-08:00

Seems I birthed a long skinny baby. 31" long (97th percentile!) and 20lbs 9oz (50th percentile).

Got the go ahead for all food groups except nuts; was told to introduce real milk in the sippy cup so that when I decide to wean from nursing, Ava will take the milk from the sippy cup and not refuse it because "sippy cups have only been for water and juice." Makes sense. Right now the milk sippy cup is sitting on the floor. Ava's not a focused drinker; she prefers to drink on the go and revisit any sippy cup she has laying around. Won't work so well with milk, I'm afraid.

She had two shots and so far has shown no ill effect. She ate lunch and is now playing with a baby bundt pan on the kitchen floor.

Ran into Wal-Mart on the way home (probably the 12th level of hell compared to Joe's 6th level of hell: Babies-R-Us). Got buttons and ribbon to finish the dress I was hoping to make Ava for her birthday. It's now a Christmas dress!

Best get cracking if I want the dress to fit her by the time she actually wears it!

With the Christmas Card of Joy

2008-12-09T09:53:00.000-08:00

Ava with her new found favorite toy - a Christmas card from our friends Carrie, Simeon and Ana out in Portland, OR. It's the only thing that keeps her entertained long enough to get her diaper changed.

A sweet keepsake

2008-12-08T15:39:00.000-08:00

While browsing on etsy.com last week, I found a vendor with goods for sale that were just beautiful. Simple, elegant and earthy. I knew I had to get something from her. I decided on a thin bracelet made from wood, personalized with text of my choosing. Her examples were inspirational (things like: "You are loved" and "Change the world") but I settled on something a little more personal for me - and hopefully one day for Ava as well.

"But how loud is a lion?"

Her first word, aside from Dada and Mama (and the other assorted sounds babies make first) was "lion" - ok, so she doesn't quite have the "l" or the "n" sound down but when we ask her to say lion, she says it. The quote comes from one of her favorite books: How Loud is a Lion by Clare Beaton. When we ask her to find the lion, she makes a beeline to her book bin and promptly pulls it out. We're still working on the "ROARRRRR!" sound but for now the "IO" sound she proudly makes will keep making us smile!

Happy 1st Birthday, my sweet girl!

See more from Paloma's Nest. The bracelet came nestled in a little nest, wrapped up in a little box with a fabric 'thank you' tag and a bow. Beautiful!

Read more How Loud is a Lion and the Books for Africa project.

Big smiles

2008-12-08T09:44:00.001-08:00

Video: Stinky feet!

2008-12-07T17:35:00.000-08:00

Birthday party!

2008-12-06T17:37:00.001-08:00