Off to see the Wizard...

Psssstttt.....

Hey...it's me. I know, I know...I haven't had anything to say for quite a while. To be honest, Dave does a really good job of speaking for both of us. Plus, he's far more entertaining than I am! ;P

Today, I was off to see the Wizard, aka, Dr. K, my neurologist. It was time for another check-up. I told him that I was experiencing more numbness back in April, and that it felt as though things were getting worse again. Now, these sensations have seemed to have levelled out, and have backed off a bit. He said that he would still considered this "setback" to have occurred within the postpartum period, but basically, anything that happens now re:numbness, weakness, etc., counts. SO, I still don't know if it was "simple" Guillain-Barre Syndrome (although my case was never simple), or if I'm headed down a chronic path of CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). I am scheduled for another nerve conduction study next Monday (the electric shock therapy test), and that will be the true definer as to how I'm really coming along.

I have to give Dr. K kudos...I almost NEVER have to wait on him. I was about 20 minutes early for my appointment and got in immediately. He's always very personable, to the point, and never pulls any punches, and if I needed to get in to see him, I would never have a long wait - 2 days at the most!

I'm not sure how I feel about the possibility of this being a chronic condition, but the one thing (of many!) that I've learned is to not put the cart before the horse.

After this, I headed to Shopper's Drug Mart to mail off my first two tu-tu creations! I am so excited about this and am really enjoying making these foofy creations for lucky little girls. I can't believe how expensive it is to ship something. The tutu and packaging weighed .090 kg. It cost me approximately $11 to ship this to Golden Prairie. Say What?!?? But get this! It cost me approximately $9 to ship it to Edmonton, which is further away and in a different province! I asked the post-mistress why the cost was different and she said that it costs more to send things to a rural community. Huh. Who knew?

Next stop was to pick up a triple barrel curling iron that I purchased for super cheap off of Kijiji. I love Kijiji.

Then, home, to rescue Dave from the monsters. We ate lunch, and then, as Dave mentioned, it was off to the Market Mall for some fun and adventure. I needed to stop at Fabricland, so there was lots of warnings and reminders about good behaviour and such. Of course, that lasts for all of 3 minutes, and then the naughtiness and misbehaving starts to kick in. At one point, while we were standing in line, an elderly lady came to stand in line behind us. She asked me how I had time to sew when I had three little ones. I replied that I did this while they were in bed! To be honest, I find making these tutus rather relaxing. Freakshow!

We then headed to "PlayLand". The girls had so much fun, so it was worth it. I was sitting near the back of the play area, and I can hear Jorja bossing Ginny around from where I was sitting. "Ginn....Ginn....no, no..don't go up there, you have to go up the red stairs first....Ginn....Ginn..." What a bossy little thing, not to mention a loud talker! Ginny still does Jorja's bidding, but it will be interesting when she starts to exert her personality more. It won't be long before Ginny's wearing the pants in this sisterhood. It will be interesting to see what CeCe's personality brings to the mix. CeCe had a nice snooze in the car seat, and then woke up and was content to sit and stand.

Then, it was homeward bound. I must admit, I was feeling thoroughly thrashed after surviving this little outing. I still notice that my stamina isn't what it used to be before this "issue" struck, but hopefully it will continue to return. Screw you, Guillain-Barre! I WILL win! Hah.

Anyhow, I hope that you're all having a great evening. Don't be shy...feel free to post a comment and say hello! We are always curious to see who is reading this thing!

TTYL

~Jewels

Breaking my silence...

Where to start.

WASSUPPPPPPPPP!!

This is Julie. Dave has posted on the side profile that I will be contributing to this blog on occasion. So, I suppose it's time to break my silence, pony up, and "speak". Dave has a real gift when it comes to re-telling the stories and antics of the kids - much better than I. I think that I'll leave that portion up to him.

How did we end up in this situation of both being off during a maternity leave? Well, it goes a little something like this.

When I was 23 1/2 weeks pregnant, I found myself with some bizarre symptoms. I was having numbness and tingling in my hands and feet, and also some numbness on both sides of my tongue. I saw my Doctor and she thought that the hands and feet thing could be attributed to pregnancy, but the tongue thing was weird, so she was going to refer me to an OB/GYN. If I got worse, I was to come back to see her. The next day, I noticed that I was having trouble chewing on my left side, my left eye was blinking slower, and I had a small "dead" spot on my left cheek. Needless to say, I had an appointment the next morning to see a neurologist.

I saw the neurologist at the hospital, and by the time that Dave and I left, I was unable to completely close both of my eyes. It was decided that I had bilateral Bell's Palsy. However, he said that there was a chance of Guillain-Barre Syndrome as the numbness in the hands and feet are not associated with Bell's Palsy. If I got worse, I was to come back to the hospital immediately. He said that with Bell's Palsy, my face would get worse before it got better.

Well, my face most definitely DID get worse. In fact, I would say that the worst day was on my birthday. My face was completely paralyzed. I was unable to smile, raise my eyebrows, show my teeth, pucker my lips...I had nothing. Because my eyes weren't closing all of the way, I had to put thick ointment in them at night and tape them shut, so that they wouldn't dry out or get debris inside of them. My speech was difficult, as I was unable to make certain sounds with my lips and cheek. Thankfully, I could still swallow, but chewing was interesting, as I had to push the food from my cheek to my teeth.

This is a picture of me on my 32nd birthday, and believe it or not, I'm smiling for all that I'm worth!!

I continued on with life and prednisone, which is the standard form of treatment for Bell's Palsy, and continued sending the kids to daycare, as I was unable to care for them at this point. I had no energy and I was moving so slowly, as though I was 40+ weeks pregnant. This made no sense to me, but I attributed it to the Bell's Palsy and fatigue.

At the beginning of November, I finished the prednisone, but still had lots of numbness in my feet and hands, and found that I was getting weaker. I was struggling to get up the stairs, and seeing as how we live in a 4 level split, this made life rather challenging. I knew that I needed to go back to the doctor when I fell twice in one day while attempting to go up the stairs - once while dropping the kids off at daycare, and once while trying to get back into the house. I was seen by the neurologist two days after these falls and my worst fears came true. I was being diagnosed with Guillain-Barre.

My reflexes had completely left me. How many of you have had the doctor tap your knee and your leg kicks out? When the neurologist did this to me, there was no response. I had nothing. I was quickly whisked down the hall for a "tasering" test, also known as Nerve Conduction Studies. After 1 1/2 hours of being shocked and zapped, it was proven that I had Gullain-Barre Syndrome (GBS). I was to be admitted to hospital for monitoring and treatment, as well as a lumbar puncture.

Standard treatment for this is IVIg, which is an immunoglobulin therapy. GBS is an autoimmune disease, where the body starts to attack itself and begins to eat the myelin coating (the insulation) off of the nerve fibers. By giving this therapy, the hope is to turn one's immune system on to attacking something else, rather than itself. I was hospitalized for 5 days, and was discharged on our 8th wedding anniversary.

Life goes on, as did the pregnancy. Thankfully, none of this mess had any ill effects on Cecilia. Recovery has been incredibly slow, with a relapse of GBS in January. I had 5 more rounds of IVIg on an outpatient basis. The IVIg DOES help, but my body is certainly stubborn. As I sit and type this, I fear that I am on the verge of yet another relapse, as I can feel the numbness creeping back into my feet. There are times that I wish I was just imagining it, but I know that it's real. How does this affect me? Well, it would no longer be called GBS, but rather CIDP. Chronic Inflammatory Demyelinating Polyneuropathy. Say WHAT?!?? Essentially, this is a "chronic", or long term form of this cannibal behaviour. I'm not going to put the cart before the horse, and I'll leave the official diagnosis up to the experts, but it won't surprise me.

Needless to say, I am on disability, as this condition makes a lot of walking difficult, and is very fatiguing. Being that I'm on disability and tired all of the time, Dave opted to take parental leave, which means that he gets 37 weeks to be home with all of us! With me staying on disability, I know that if I start to get better sooner rather than later, I go back to work, regardless of whether or not I've had a full year off with the baby. We decided that this was the best option for all of us, as I just don't have the stamina to take care of 3 kids by myself right now.

SO, thank the good Lord for Dave!! He has been the rock through all of this drama, and the superglue that keeps us all stuck together. He's the calm and the soft place to land. He's the super Dad, the super Chef, and, of course, my super Star!

Anyhow, I've broken my silence and filled up this space with a lot of words. Dave is much more succinct and to the point. I'm a blabberer and a talker.

Till next time....

~Julie~