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Wednesday, September 21, 2011

Just Breathe!

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.

I found myself with the family I wanted, and one I knew I was destined to have.  My children have watched me get sick and go to the hospital, not to come home because I'm spending the night getting meds, or being admitted for an extended stay.    But, I survived and I was thriving in the life I was given.  I understood my limitations and when symptoms began I knew to start medication and get to my specialist.  My children began to understand that sometimes mommy couldn't leave the house.  I had to take sick time from my work, yet I kept a part time (which became full time) job.

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.


mr cc mouse said...

We have had bigger portions of; in sickness, for poorer, than most. Don't worry, you are stuck with me forever, and ever.

Teri said...

Aw, your husband is so sweet! I had no idea of your struggles with this Pam - my aunt has it and it has been just as difficult for her. I totally understand. Thank you SO much for sharing!!

Robin Quick said...

Your story made me cry hun! Here I was feeling sorry for myself this morning because Im overweight and am just generally not in a good place in life. Then I read your story & realize I should be thankful that I can get out of the bed every day and not be in pain all day. Due to physical limitations & medication side effects I cant do a lot of what I want to do & it has really taken a toll on my body & life. It seems that you have a loving, caring, patient & understanding man there girl, be very thankful. Pray for me sweetie & and I surely will be praying for you.

3Lilacs said...

Dearest Pam
I found your story so heart felt and touching. Sometimes I think my life could be better and then I read stories like yours, where you must take life day by day not knowing what's ahead. To be afflicted at such a young age and yet cope so courageously and continually is very inspirational. You are a perfect example of what a positive attitude can accomplish. I hope that with medical advancement that something can be done to alleviate some or all of your discomfort. Thank you for sharing.
I love you Pam

Randi Troxell said...

oh your hubby is SO SWEET!
and bless you.. i had no idea of this going on.. you DO keep a wonderful attitude and brave face.. bless you.. you blessed me and i'm sure many many others by this post!

ginette4 said...

Tears are running down my face as I'm reading this I was also mis-diagnosed for years. In 1990 I was throwing up black and rushed to the hospital emergency, after 3 days of every test imaginable I was diagnosed with Crohn's.. Within 8 months I had 12" of my small intestines removed..I was doing well till all the stress from my husbands car accident and our business just took it's toll, I have been home since Jan 2009! The worse is family and friends not understanding how crippling this disease is and being home day in and day out..I'm now going to see a mental health specilist..always crying. Take care you aren't alone, one day at a time!

YogaMama said...

Have you ever looked into/heard about the Gut and Psychology or GAPS diet? It's a grain free diet that is used to heal damaged guts and has many, many success stories for many different diseases such as autism and crohns. Good luck!

Lee-Ann said...

I'm sorry to hear this. I hope you continue to keep a positive outlook and I hope that one day they will find a cure to help you. Many thoughts.

CanadianMama said...

Oh wow, I had no idea! You seem so positive and happy all the time - you are in inspiration for sure. I have a friend who was recently diagnosed with crohns and I've seen her in and out of the hospital this last year. It's heartbreaking! And you are right about it being a silent disease because she looks totally healthy. Really wishing there was a cure!

Diana - Teacher Mom said...

Pam, I would never have known. Thanks so much for sharing your story. The caretaker at our school has a son in his 20's just recently diagnosed with Crohn's. He has been severely ill since the summer and will be undergoing surgery Friday morning. What an awful disease.

PS. Your DH is so sweet for leaving that comment.