$@?! terms

Here is a list of things I am coming to terms with this morning:

1.  I am somehow the mother of a 10 year old.  I remember vividly the drive home from the hospital.  Brett was so nervous.  It was snowing.  Naomi was asleep.  I was in pain from the csection.  We were so happy.   

2.  I will never be back to my old self again.  I was so worn out on thanksgiving I had to lay down and take a nap.  I did not help much.  Then we all got sick and it got worse.  There were moments during the vomiting extravaganza that my body ached so bad I thought I was not going to make it.  Everyone is pretty much back to normal, but I am still aching.  I could not sleep because my hips hurt so bad.  

3.  I need to make the most of the time I am able to be present.   My nephews and my sister and brother in law were here, and I slept a lot.  I hate that. 

4.  IVIG every three weeks is working very well for my body.  I just have to figure out a way to make it ok in my head.  

That's all folks.  

All my love......

Look forward to something

When ever I got in a funk, my mom would tell me to find some thing to look forward to.  It always worked.  Now I feel like I am looking forward to my next infusion.  Every 3 weeks.  I am looking forward to it.  That is good. 

There are people with CIDP who experience a time when Ivig stops working.  There are people who experience horrible side effects after years of being on Ivig.  When I see these stories, I get scared.  I just push it out of my mind when it happens.  Then I have dreams about my kids drowning or dreams that all of my teeth fall out.  That is when I know I need to make a plan or have an idea about what we would do then.  There are also people with CIDP who have stem cell transplant.  Most of them are doing well.  It wipes out their immune system and sort of resets it. It is still experimental.  I am not there yet. 

There are things I am looking forward to.  This time last year the only thing I was looking forward to was an appointment with a neurologist.  I guess I am getting somewhere.

I have been working with a new physical therapist who was doing a rotation with my beloved PT.  She presented my case at her final meeting with the people who are overseeing her rotation.  Most had not heard of CIDP.  I am glad to have met her and I am glad that they know about this illness. 

I am looking forward to my mom visiting.  I am looking forward to the holidays.  I am looking forward to another infusion.  I am looking forward to getting my infusions moved to home.  I am looking forward...

Dead fish

I took the kids to a friends house this summer.  She has an amazing pool.  The kids got in, Gabe and Isaac had their floaties on.  Everyone was safe.   I was pretty sure I could have gotten into the pool with the kids, the problem was making it back out.  I got down to the edge of the pool, took off my AFO's and put my feet in the pool.  While my friend was inside, I was looking at my feet.  My left foot was strong enough to resist the water.  My right foot, however, was not.  It was floating like a dead fish, with the tide.  I could not stop it.  It was such a weird feeling.  It is moments like these that remind me that I am "sick".  Most days, I just go with it.   

I remember one time reading that Michael J. Fox just goes with the ticks that come with his Parkinson's.  He does not spend time fighting to hold them back because it wears him out.  Most days, I just go with the flow.  I don't try to fight it.  If I fight it, it wears me out.  Physically and emotionally. 

I dropped a watermelon.  Out of the fridge.  On to the drawer in our fridge that was already broken.  And on to the floor.  A WHOLE WATERMELON.  15 minutes before I had to go and get the kids from school.  It was a mess.  First, I said SHIT.  Then Isaac promptly said shit as well.  I told Isaac not to say shit.  Isaac and I spent 15 minutes cleaning up watermelon. 

I guess that I forgot that I was too weak to hold a watermelon with one hand.  I spend a lot of time just trying to forget what has happened.  Maybe not forget it, but just go with it.

School has started.  We are just like every other family this time of year.  Nuts. Getting back in the routine of life.  I have been trying to get my insurance to pay for the new IVig schedule. Brett is going out of town again.  I have IvVg next week.  Our schedule next week is nuts. 

I am just trying to go with.

For my mom, just go with it.  Enjoy it.  Live in the moment.  

All my love. 

  

An update

I got a second opinion.  It took 3 hours.  The doctor walked into the room and told me he was not sure I had CIDP.  And we just went downhill from there.  3 hours later he decided I do have CIDP.  He sent me to a hematologist/oncologist.  He called my neurologist about changing my treatment. 

We went to Colorado.  I am not sure what happened there.  I did not feel any better.  I was really hoping that our trip would make me feel better, but there was a lot hanging over my head during that trip. 

We came home. My mom came with us.  I had an appointment with a hematologist/oncologist. I had 5 vials of blood taken.  I had an appointment with my neurologist.  I had port surgery. I went back to work.  I had IVIg.  Kids started school.  We decided to have Gabe repeat Kindergarten.  I started PT again.  I went back to the hematologist/oncologist (this time with Brett by my side) and we were  given the all clear.  We went to Iowa for my brother-in-laws wedding.  Back at work. 

My Mom went home after she cleaned our whole house. 

I am ready for things to slow down. 

All my love. 

For Brett on the eve of his birthday...

(This post will contain some gushing about my sweet husband.  LEAVE NOW if you don't care!)

Husband,

As I told you this morning, you amaze me.  Your strength.  Your ability not to give up when giving up would be so much easier.  Your maturity in difficult situation.  Your love for your family.  Your sense of humor.  Lesser men would have left during the last two and a half years.  But not you.  You are committed to us.

I love weddings.  I cry at them.  I cried though Maggie and JR's.  And Blake and Priscilla's.  They remind me of why I married you.  It is hard to put this in words, but I know you love me more than anything in this world.  I can feel it.

In sickness and in health.  Better or worse.  Richer or poorer.  Who knew sickness, worse and poorer would all happen at the same damn time?  But you will not give up.  And you will not allow me give up either. 

This year, our 37th on the planet and our 12th year of marriage is going to be good.  We are together.  We made it through the last two and a half years of hell.  And even if things don't get better, we are together.  Together we can make it.  I could not do this alone.  I don't want to face this wicked world without you.  Holding your hand, like I have been doing so much of lately, makes me stronger. You are giving me strength when I don't have any. 

You are amazing.  And there is no one's hand I would rather be holding.

All my love,

Wife

It's been a while...

I have been busy finishing  up work for the summer.  The kids have a lot going on.  We are trying to keep up the normal summer pace.  Probably not the best idea, but it is what it is.   Brett told me to slow down.  It is hard to do with 3 kids who want to go.  

I went to see a surgeon.  Good news, I do not have a hernia.  My 3 giant babies have caused damage to my belly.  Only thing that will fix it is a tummy tuck.  Guess what, my insurance won't pay for that!  I am having the port placed in August.  It is time.  So one more round of IVIg in the veins.  

Some people we love have been going through some stuff.  Some icky, horrible, and stressful stuff.  Stuff I am not going to talk about.  Stuff that is not mine to share.  I went to Mass when we got home from Iowa.  I was looking for some peace.  Maybe a few answers.  I got nothing.  

As for me, I am in need of IVig.  I can feel it.  I go in on Tuesday and Wednesday.  Brett is going to be out of town but my mom will be here.  

Oh, I go to learn more about the study on Monday.  More after that.....

All my love. 

4 sticks

It took them 4 tries to get my iv Tuesday.  I had 3 on Wednesday.  I had an allergic reaction at about 2 pm on Wednesday afternoon.  We are not sure what happened.  It can happen, hives and itching.  I was itching so badly that I wanted to take a knife to my scalp.  At the same time this happened, I lost my IV access.  I was red from head to chest, no IV access for Benadryl, and itching like my head had been dipped in poison ivy.

They got the IV in and got me some Benadryl.  Have you ever had IV Benadryl?  It is good shit.  Knocked me out for about an hour and that was the half dose.  I have had a headache off and on since Tuesday night and I am whipped from this round.  This is the worse I have felt since I started this process.  Not my legs and hands, they feel great, it is the rest of it.  My arms are bruised.  Headache and neck ache.  I am super tired.  Usually I feel better by now.  The kids are home and it is warm out.  Maybe those are adding to the exhaustion. 

I think it is time to get a port placed in my chest.  I am not an easy stick to say the least. The port may change my life a little.  I will be able to do my infusions at home.  That will help.  The port is a symbol for me.  I feel like I am admitting I am going to be doing this a while.  There is hope for remission.  The neurologist said "You respond very well to IVIG, that is hopeful.". I still think it is time for a port. I have an consult with a surgeon. 

Naomi heard Brett and I talking about the possible surgery.  She started crying while we were waiting at Gabe's tutoring on Friday.  She said she does not understand why all of this bad stuff is happening.  Why did Pops have to die?  Why did you have to get sick?  Why mom?  I told her we cannot ask why, we just have to figure out how to handle it the best we can.  And by getting this port, I am trying to make things easier on us.  I just have to remember this pep talk I gave her and give it to myself! 

The kids were with our neighbor Tuesday.  She took them to tutoring and swimming.  She fed them. She got Isaac to take a nap.  My sweet friend Cathy had them on Wednesday (along with her 3 kids!). I think my kids love Cathy more than they love me some days! Whitney made us dinner.  We are lucky to be so loved.

I have gained 18lbs.  These damn steroids.

I am trying to get into a clinical trial at KU.  I have always wanted to be in a trial.  Is that weird?

I was brave.  I think my dad would have been proud.  I will be brave again when I have the port placed. 

All my love.