Monday, April 19, 2010

Breaking my silence...

Where to start.


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....


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