Wednesday, October 26, 2011

Emily Update

Dear Friends,
This picture was taken 6 weeks ago.  Emily was so happy to be selected for the high school dance team.  The tryouts were back last May.  In this picture she was in pain.  Over the last two weeks she has spent much time in bed and there are few days she can make it to school.  She has constant pain throughout her body and sleeps most of the day.  For those of you new to my blog Emily, our 16 year old daughter, has been suffering from Lyme's disease. 

It has been over 27 months since we have been dealing with this and things just seem to continue to get slowly worse.  (Maybe things are actually getting better, but it sure feels worse right now.)  It was last May when she started getting treatment for her Lymes.  For such a long time we didn't even know what it her mysterious illness was.  We've had good days and bad days throughout, but the bad days have become really bad days and are the norm.  I was hesitant about her trying out for the dance team, but I said nothing as I wanted her to be like the other kids and have the opportunity to do the fun things that girls her age get to do.  The doctors all say that it is important for her to keep exercising as well.

We were back to see her Lyme disease doctor a few weeks ago.  We see a specialist out of state for this and it was our second visit to him.  Lyme just seems to be like a game, some sort of a sick game where the bugs play hide and seek in a person's body trying to do their best to evade antibiotics.  Emily's medication changes monthly and I know it's hard on her body.  They, the doctors, say that because she is feeling so poorly that is actually a good sign as it means the Lyme bugs are dying off.  As those bugs dye they release a toxin in her body that causes the increased pain and fatigue.  Still, it has me second guessing myself every move I make with her.  She's got a box of prescriptions for this or that regarding her Lyme and pain pills don't seem to touch it.  Emily is so over all this pain, we all are.  It has been extremely discouraging lately.  Even though the increase in pain is supposedly a good sign, to be in such all over constant pain has led to some incredible depression and frustration.  There are many days Emily doesn't want to continue this life.  Still, as hard as this is, I give God thanks as I have to put my total faith that He is working behind the scenes and we will see evidence of this soon.  What else can I do?

We've gotten Emily on a plan at school that allows kids to miss days due to medical conditions.  In the past two weeks she has only been in school two days each week and since school started this fall she has never made it all five days each week.  I don't know how she can keep up.  That gives me stress, but I guess I just need to forget about that right now.  Education can always come later or with summer school, or whatever if needed.

So please, I sound like a broken record here, but continued prayers for Emily.  Pray that the pain leaves her body.  Pray for ultimate and complete healing.  Pray that she can fight the depression she is feeling and not take matters into her own hands and do something stupid.  Pray that each medication choice is the right one for her and pray for her doctor and his staff.  Also, pray for our other kids, Katie 18 and Timothy 14.  We do our best to spend quality time with them but they often get the shaft because of Emily's needs.  They understand, but it's hard on them too.  I think that's all.  Thanks friends.  I love you.

Nancy

ps.  Sometimes in the back of my mind I think that God is preparing Emily for something really great.  I picture her at an older age speaking to other children in pain with empathy in that she knows what they are going through.  I even picture Emily finally understanding why she had to go through what she is dealing with now and thanking God for it so that she was able to gain the knowledge and understanding to help others.  I guess this image helps me deal with it all.  I can't wait for the day that I can write you all a praise report.

2 comments:

Angie said...

My thoughts and prayers are with you and your family and Emily.

When I was her age I went through a series of unsuccessful operations that left me blind in my left eye. I don't know how my mother was able to do it but she was my rock during the entire time. Now, as a parent I look back and realize just how hard it must be to watch a child go through something like this. And like I said, prayers will be sent your way.

Jess said...

My prayers are with you, what an optimistic outlook you have, very inspiring :)

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