Wednesday, September 21, 2011
This is a true story. This is my true story.
One, that is private and not often spoken of. This is the true story of how I get through my days, one at a time.
I will begin this tale seventeen years ago when I was wed, a time which should of been exciting and full of hopes and dreams. Rather, for me it was a time of survival. I was angry with my body and how it was failing me, I was angry with doctors who couldn't give me answers, and I was angry that I was robbed of what should of been an exciting time during my life. I should of been reveling in newlywed bliss, but instead I found myself searching for answers as to why I seemed to be wasting away to nothing.
After months of misdiagnosis and symptoms worsening I was finally given an answer of Crohn's Disease.
Crohn's Disease is a chronic condition which I found could be controlled with medications, most of which have severe side-effects. Crohn's Disease will go in and out of remission for my entire life. One thing I've learned is to never take a good day for granted, because tomorrow could be one of those days where I can't get out of the washroom.
Four years after being diagnosed, I was blessed with my first child. Pregnancy didn't come easy, nor did it go well. I had to be treated for Crohn's throughout my pregnancy, in fact all three pregnancies I was treated for Crohn's symptoms.
Then my third child was born in 2006. Of course Crohn's had made itself known during the pregnancy and I dealt with it once again. But, this time I wasn't recovering from what I thought was an attempted epidural. I was experiencing a lot of back pain and found myself limping and in the need of assistance as I walked. Bringing this to the attention of my doctor at my six week check up, we decided that I must have some nerve damage from the attempted epidural. Thus, began several months of doctor visits, and tests to find an answer for my back issues.
Early 2008, I finally saw an orthopedic specialist who confirmed that I had a break in my spine which was in need of a fusion. Scary! But, I was more than willing to take the risks. I wanted to be able to do things again like I used to, simple things like taking my kids for a walk. Then, I heard that he suspected my bone quality was deteriorated due to all the steroids I had taken over the years for the treatment of Crohn's. A bone density scan confirmed his suspicions and I was told he would not be operating for fear that my whole spine would crumble when he began to repair the damage and I would end up in a wheelchair with no hope of walking. At that point we made the decision that I would try to remain at the point I was at - remain at my level of function.
Children do not understand, nor do most other people. Looking at me I don't look disabled, but, I am. I need to spend a lot of time resting and simple things exhaust me. I can't sleep well at night because my back will spasm and if I am not careful in changing positions frequently I won't even be able to get out of bed in the morning. I can't walk more than the length of my street without debilitating pain. I can't go on field trips with my kids and volunteering at their activities is usually impossible. Even my extended family tends to forget that I have these limitations, because you can't see it nor do I speak of it.
Living with chronic disease and what I call a silent disability has changed the course of my life. It has impacted my family's financial situation, since now I am unable to work at all. I have a disability lawyer who fights my battles with my employer and the government. It makes me sad when my youngest daughter holds her back and says things like she can't do (something) because her back hurts.
Proudly, I have often been told that I have a great outlook and attitude about life, even though I've been dealt a hand which isn't too favourable or one which anyone would choose. I know that others have it much worse than me and I try my hardest to remember that. I am very lucky to have a husband which has stood by me - many would not. Not knowing what is around the next corner is terrifying, yet, I can't sit here waiting for the next shoe to drop. All, I can do is live each day to the best of my ability.
I believe there is a reason for everything. I don't know right now why I have a chronic disease, or why I have to live with the pain of a disability, but I do. When life gets the best of me, I remember to just breathe.
Disclaimer: I wrote this a post as a result of being awarded a Blogger Grant from Mom Central Canada (Summer). Thank you to Mom Central for supporting bloggers though their blogger grant program. I wrote this personal post in the hopes of encouraging others who experience difficulties and hardships, and wish to inspire others to make the most of every day.