$@?! 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. 

Good things

I cannot sleep.  I had a weird experience yesterday.  I had to get it out.  Bear with me. 

My dad found out he had cancer almost 2 years ago.  My mom and dad had just been out in Kansas City because I had my gallbladder out and they were helping with the kids.  It was summer.  It seems like that is when things started to fall apart.  My gallbladder was the glue that held us all together.   Losing it made some sort of hole in the universe.  

I was in Colorado after my dads exploratory surgery.  I went with them to see the doctor for the follow up.  It was hot out.  It was a big hospital.  My mom had done the research.  She already knew.  My dad did not talk about it.  I am not sure if he knew what the doctor was going to say.  When the doctor came in and told him I was sitting across from my dad.  His face dropped.  The doctor told him the plan for the surgery.  I told the doctor that the plan sounded shitty.  My dad did not have a lot of options.  Do a giant surgery where the open him up, remove the cancer coating most of the organs in his belly, fill him up with chemo, shake it around, and wait to see when the cancer comes back.  Not if, when.  Or do nothing.  Just wait. Wait until he starts to get sick,  and then manage what ever comes. 

I am not sure it hit home with my dad until the doctor said to him that he had stage 4 cancer.  I will never forget the look on his face.  He was so healthy.  He did not drink or smoke.  He watched what he ate.  He went to the doctor.  He had a risk of colon cancer. He did his colposcopys.   He ate shitty bran ceral every morning. 

There was a fellow and a medical student there.  My dad trusted the fellow for some reason.  He asked him what he would do.  He said that he would let the doctor do the surgery.  He said I would not say that about every doctor he had worked with, but he would say that about this particular doctor.  After my dad's surgery, I saw that fellow in the cafeteria having dinner with his wife and 2 young kids.  I told him thank you for getting my dad through the surgery. I think I would like to take that back.  I wish he would have died during that surgery.  It would have made more sense.  I feel like it would have been easier.  Like my dad said to me many times, well you can wish in one hand and shit in the other and see which one fills up mor quickly.  

My dad had some blood work to do.  They both had their brave faces on.  I went to the bathroom to cry and call my sibilings.  We left the cold hospital.  We went to Wendy's.  My dad had a choice to make about the timing of the surgery.  He could have done it the next week while I was still in Colorado, or he could have waited until September.  I asked him to do it while I was there.  So selfish.  I wonder if things would have been different if he would have waited.  We will never know.  We talked at Wendy's.  My mom and I both were crying.  And that is the first time I saw my dad cry.  Just a few tears.  

A week later, we were at the hospital, waiting.  It was hot.  The hospital was cold.  And all medical buildings and hospitals smell the same.  

Yesterday, I went to meet a new primary care doctor.  I hate going to the doctor.  So much that my blood pressure goes crazy high.  So does my pulse.  I went into the parking garage at the doctors office.  There was nothing so I parked outside in the handicapped place.  I got out of the car, it was hot.  I went back to the hospital in Denver.  To that horrible day, and the many worse days to follow.  The heat of the parking lot.  I had to force my self to walk into the medical building.    It smelled like the hospital where my dad had his surgery.  It was cold.   I went to the bathroom.  And I cried.  It was such a powerful flash back. Like nothing I have ever experienced.  I sat in the stall and lost it.  I did not want to go to see the doctor.  Nothing good happens at the doctor.

 I made it in there.  I met the doctor, and she was wonderful.  She gave me the nurses desk phone number.  I have to meet with a surgeon about placing a port for the IVIG and having an inscional hernia repair (again, from the magical glabladder that held us all together).  I go back to see the doctor in August.  I think I have found a doctor.  She asked me how I was doing mentally with all of this.  She told me that her best advice is to not feel like a sick person.  She said not to get frustrated.  Even though dealing with chronic illness at a young age is frustrating, to try and not feel sick.  I think that is wonderful advice. 

My dad was so brave to face that horrible surgery.  I am lucky to have options with my illness. I am trying to face this illness and be as brave as my dad was.  I never talked to him about it, but I want to believe he did that for my mom and for us.  I am not sure he would have chosen that if it was just him. 

And today, I have to be brave.  I have to go back to the hospital.  I have to have more IVIG.  I have to face the heat of the parking lot and the cold and the smell of the hospital.  I have to believe that good things will happen there.  I am healing, slowly.  I will not be this sick forever.  The primary care doctor was taking my history and she looked at me and said "You are going to get better, I can tell, you are going to get better".  Maybe good things do happen there.  

Who we used to be...

I used to be a woman who took my husband for granted. I expected him to do a lot and to be just like me.  Now things are different. He has a lot on his plate.  He is doing what he used to do and some of what I did.  We are getting in a new groove. He has a strength I only hope to possess.  I know he will never give up on me and he will never let me give up on myself.   He knows me better than I know myself.  Our marriage has been tested a lot in the last 2 years.  We are a work in progress.  I could not imagine watching this happen to him.  This disease is happening to us.  Not just me.

I used to be a mom who put my kids clothes away and made their beds and picked up their rooms.  I don't do that any more.  They have to do it. Naomi has to hold the boys hands in parking lots.  I worry about her and how much she tries to make everyone happy all the time.  Gabe carries lots of stuff for me. He is angry and frustrated.  I am too.  And Isaac, well, he is only 4. We are still working on things.  

I used to use real plates and make muffins from scratch.  We did not eat out very much.  I used to have a clean bathroom and clean sheets.  And a clean kitchen floor.  There were less cobwebs.  We used to have friends over without a second thought.  Not so much now.  

Here is the secret I have been let in on, and I am going to share with you, NONE OF IT MATTERS!   My kids are clean and happy (well, we are working on it) even though my house may not be!   My sweet husband is doing his best he can.  Things have not fallen apart as I feared they would.   The kids are learning to help out.  Gabe and Naomi like to be helpful.  Isaac, again, we are still working on it.  

Brett said the other day that there are days he feels like we are going to be okay, and there are days when he feels like it is all going to fall apart.  We are on the brink.  But it was like that before I got sick. We were busy.  We are raising kids and trying to get somewhere.  Where, I don't quite remember anymore.  That seems less important now. 

I want to live differently now.  I will live differently now.  I am going to choose to live differently now. It is all a choice. 

(Here is a health update:  I am headed to see my neurologist tomorrow.  I think I am going to be headed back in for IVig next week.  More pinky numbness.  It is okay.  I got so much better in May, I at peace with it.)

All my love! 

F@£! sleep

I like to get up before the kids do.  It gives me a moment to think before the day gets hectic.  I have been having trouble sleeping lately.  Lots on my mind.  Why is it when you are super tired you cannot sleep.  The harder you try, the harder it is.  

I went and had a margarita last night with my BFF.  My goodness, it was yummy.  And in that short hour and a half I felt re-energized to face the rest of the week.  At least with the kids, not so much physically.   

I go to see my neurologist on Monday.  It has been 6 weeks since IVIG.  I think I need it again. As much as I hate to admit that.  I can feel it coming on.  It is hard to explain.  But I will be happy with getting 6 good weeks.  

There is that moment when you wake up in the morning where everything thing is ok.  I love that moment.  There is nothing wrong.  Then I move my legs. 

All my love.  

The robber

Isaac dresses like Mario or Luigi almost everyday.  Vickie (my mother in law) found a pair of overalls at the thrift store and magically turned them into a Halloween costume as Luigi for Gabe.  Isaac has taken the overalls and now wears them all the time.  Probably every other day.   He has dressed like Luigi or Mario or Fire Luigi or Fire Mario pretty much everyday since Halloween.  They are big and baggy and have huge pockets. 

I am trying to understand the psychology behind his clothing choices.  I think it has to do with control.  Of everyone, his little life has changed the most.  I was so looking forward to getting to know him this last year. He really got to know his Grandma Sharon very well.  I think she is in love with him and his pretty blue eyes.  And he spent a month with Aunt Person (Mandy) and her family.

But he and I are still working on our relationship.  He does not really understand about my legs.   He thinks they are broken.  Everyone we meet who is new to us he tells the same thing "I'm Isaac.  This is my mom.  Her name is Sarah.  Her legs are broken."  EVERYONE NEW!  Poor boy.  I am sad that he will probably not remember a time when I was not sick. 

We were at The Dollar Tree (best store ever)  looking for some "summer is fun" items.  And both of the boys needed to poop.  Why is it that every time we go to a store (or the Hauser's house)  my children need to poop?  There is not a public restroom at The Dollar Tree.  As we were leaving in a rush, Isaac asked me for a Scooby Doo towel.  I told him no, and to put it back.

We headed over to Hyvee to use the facilities, grab a few things, and then to the car wash to vacuum out the van.   I cannot climb in the back of the van so Gabe was in the back vacuuming and Isaac looked me square in the eye and as he pulled the Scooby Doo towel out of the pocket of his very baggy Luigi overalls and he said "Mom, look what I took!"  Uh no sir.  I told him we were going back to the Dollar Tree and he was going to tell them that he stole the towel.  Of course, he started crying.  Gabe played right into my plan and started telling Isaac that he was a robber and that they were going to call the police.  

By the time we finished the errands and the van , I was beat.  I was not too excited about heading back into the store, tracking down the worker, and explaining things.  However, I knew I had to do it.  If Isaac turned into a real robber, I would forever regret that I did not do what I made Naomi do when she was 3 and stole a duck from Bath and Body Works.  She still tells people that story. 

We trekked back into the store.  Isaac with his little lip quivering found the worker, told her what he did, and she has wonderful!  She told him that if he were older that she would have to call the police and asked him if he understood that taking things from a store without paying was wrong.  He said yes. Then she asked him if he was ever going to steal again, and he said no.  I smiled and told her thank you and we left. 

I have to still follow my mothering gut.  There are so many times that I feel too tired to do it.  I hope that my kids will someday see that I am trying my best.  When they are frustrated with me or I need their help, I tell them "I am doing the best I can right now." That seems to help them understand.  I hope they know that I am doing the best I can right now.  And in that moment, it meant going back and making it right. 

All my love, even to the robbers.  

A long ride home

We went to Iowa for the weekend.  It was rainy and cold.   Everyone had a good time seeing family and relaxing.  Brett got to go fishing.  We ate mushrooms.   It was nice to not have to worry about keeping up with things at home.  We all needed the break.

About an hour into our 5 hour ride home, Brett and I had a very deep conversation.  It is hard to sum it up.  It was about deserving what you get.  About God and how if we believe that we are covered by God's protection, we also have to believe that the bad stuff that happens is also sent from God.  It is funny to talk to people now, I feel more attuned to what people are saying about their lives in relation to what I am going through.  Lots of people say things like "Thank God it (whatever they have faced) was not that bad.". "God has spared me from such and such.". Things like that.  Everybody has a story about how they were protected.  If you believe that you are protected by God, then you have to believe the opposite right?  You have to believe that God does not protect you.  And He did not protect me. 

Brett has a different philosophy.  He thinks that God has nothing to do with any of it. Good or bad. Everything is random.  He said something very profound to me that I spent a lot of time thinking about, he said "I think we just have to hope we are not it the way when the shit hits the fan.". I think that he is right.  

I don't believe that my dad deserved his end.  The verdict is still out on me.  My sister reminded me today about something that the priest said at my dads funeral about sacrifical suffering.  Suffering for the sake of others.  If I have to go through this to spare others, so be it.  If it spares mine, I will take it for the greater good.  

Maybe I had a simplistic view of God and His protection.  I liked that view.  Now things are much more complicated.  And so is my relationship with God.  

Needless to say, it was a long trip home.  I cannot stop to long to think about any of this because if I do, I feel like I will just stop.  Stopping is not an option.  

Does any of this make sense?  Probably not.  

Here is some good news, I feel really good!  I am 4 weeks post IVIG, and I am still on a uphill swing!  I can really wiggle my right foot.  By really, I mean more than in the video. Maybe I will post another one.  Maybe Brett and I will do a volg.   Maybe I should ask him first!   

All my love!  

Blessing

The other day I was at the grocery store.  The meat manager worked my inlaws and he and I have become friendly.  He shares the good deals with me and we exchange plesentaries.  He is a nice guy.    A few months ago, when I started going to the store again, I ran  into him and he mentioned that he had not seen me for a while.  I explaned our situation, he listened and shared a health scare he recently had.  

I went to the store on Monday.  I ran into him, and he asked me how I was feeling.  I said fine, and changed the subject.  He then said "It sure does look like you have been getting some sun." No, I haven't.  It is the medicine or the illness.  My face is always beat red.  And I am sweaty. Really sweaty. All the time.  And when you talk about it, it gets redder. I know he was just making conversation, but I hate explaining myself and having to talk about my sickness.  I guess maybe I will just say yes from now on.  

I know it is the 'roid rage, but I feel the urge to punch people a lot when they stare. 

So with out further hesitation, here is a list of people who I want to punch:  

1.  Anyone who comments on the redness of my face.

2.  The woman who stared at my legs for so long she ran into an end cap at Target.  I guess the universe sorta punched.  

3.  People who text and drive.

4.  People who give their 5 year old red bull.  

5.  People who litter.

6.  People who do not put their cart back in the cart holder in the parking lot. If I can do it, so can you!  

7.  People who use handicapped parking and don't have a tag.  I want to punch these people in the face.

8.  People who text during church.  

9.  The neighbor who lets his dog shit in my yard.  If I wanted dog shit in my yard, I would have a dog and let it shit in my yard.  

10.  Pretty much all teenagers.  

11.  People who do not feel the rules do not apply to them.  Like people who do use their turn signals, people who do not renew their car tags and people who do not stop at stop signs.  

My mom says bless you to people a lot.  At my college graduation, the first time they met Brett, there was a woman who was saving a bunch of seats, my mom kindly asked her to move over a little for my grandma.  The woman said no, and my mom looked at her and said "Well bless you!". I heard this story recounted from both Brett and my BFF.  I think she may have it right.  There is no amount of anger or punching that is going to change them.  And why waste what little energy I have on being angry at them.  Instead, I will start blessing.  

Although, there was a man ahead of me in a car yesterday that did 4 on the list.  I really wanted to punch him.  

All my love! 

Another update

Here is another list, cause I am feeling lazy and  beat up by the month of May.

1.  We survived Brett being gone. No ninjas attacked us in the night.  This week was hectic, we ate out a lot, I will not win any mom of the year award, but everyone is alive.  

2.  I had Ivig on May 1 and 2.  I feel so much better this time around.  I feel like I have turned a corner.  I am not sure how to explain it.  I just feel it.  

3.  Today is my last day of physical therapy.  I have gone religiously since January 2.  I love my PT. I cannot express my gratitude to her.  She is now a friend.  I plan on going back in August when the kids are back in school.  

4.  Mom guilt is the worst guilt ever. EVER!  Gabe missed a field trip this week.  I could not go on Naomi's.  I so wish I could be the mom I used to be.  I know they won't remember these days.  

5.  I am completely off all pain medicine.  Whoohoo!  I would like a margarita please!

6.  Gabe's last day of kindergarten is tomorrow.  He has a program and a picnic.  Just thinking about it is making me tear up.  This boy has had a rough year.  The middle kid.  Hard time learning how to read.  He is behind in school. He has lots of anger.  We are going to see a psychologist.  I think my illness has been the hardest on him.  He and I are connected in a different way.  There have been many times in his life that I think if he could climb back inside of me, he would.  And I have wanted to put him back.  I love all of my kids, but I identify with Gabe.  Do other moms feel this way?  

7.  I took a video of my feet last week.  I am hesitant to post it.  Check back tonight.  I might feel brave enough. 

My grandma has always signed her cards with the words "All my love".   It always made me feel special.  Like I could feel her love in that closing.  So I am going to start signing my posts like that. Because I mean it.  

All my love.  

The choice

There is a woman I know who has a lot of health problems. Many caused by the fact that she is very overweight.  Some not.  She has recently been diagnosed with a new illness that she claims she will die from.  The way she put it to me was "It is what I thought, I have 5-10".  Is this a prison sentence?  Anyway, after telling me about her diagnosis, she asked me how I was doing,  I said ok.   She said "Well, you don't really seem like it.". I looked at her straight in the eye and said "We all have a choice.  We can choose to dwell on the negative, or we can live.  I am choosing to live."She just looked at me.  Then she left. 

She has always been like this. Wanting pity.  Wanting to be the sickest.  Go right ahead.  Be that.  I am busy living.  

The same, but not

I am going to make a list of 12 things to catch you all up on:

1. I FOUND SOME NEW SHOES!  They are Dansko.  I wore Dansko before and I loved them.  I am so glad they fit!
   
   
   
2. Isacc has been back for a month and we are getting used to being together again.  Our days have been filled with watching Mario cartoons, seeing friends, and physical therapy.  
3. It has been 4 weeks since the last IVig.  I think I need another one. I am seeing the Dr. today. 
4. Naomi is in a play.  It is May 9th at 7 pm.  If you are in the KC area and want to come, let me know and I will pass along the details! 
5. I am getting less worried about Brett being gone.  We have good friends that live close and a wonderful neighbor who would drop everything and be over in a second if I call.  
6. May is NUTS!  I looked at the calendar last night.  I would have been feeling overwhelmed by the next month if my legs worked.  Now, it is daunting.  One day at a time.
7. I got 2 phone calls this week from old friends who both are in Colorado.  It was so good to talk to them both.  My one friend, is going thought a lot right now.  I can so relate to her struggles.  I love her and she is always full of perspective and gives me something to think about. 
8. Sugar and I have been flirting.  We are breaking up again tomorrow.  As well as gluten and dairy.  Tomorrow will be hard.  And probably the next two weeks.  
9. I am loving this warmer weather.  Then I looked at next week. Mother nature can go fuck herself.  
10. I had a new friend reach out to me after my blog on Sunday.  Her wisdom and insight were wonderful.  Thanks Sherri! 
11. I love mail.  Especially when it is a homemade gift.  And from someone you have not seen from a very long time.  
12. Things have been the same, but not. 

F@&! Pity

Naomi changed from public school to catholic school in August of 2011. My dad was in the hospital at the time that school started, and he died right after school started. To say the least, since we joined the community there, my life has been in a bit of a downward spiral. I have not made a huge effort to try and meet people.  This community is very tight knit.  They take care of each other.  I have had people we hardly know offer to help us.  We have felt welcomed and loved.  More importantly, my kids have BEEN loved.  People take care of them and nurture them there.  And they pray for us. 

We also go to Mass there. I had to go to programs at Christmas time.  With a walker.  I have my braces now, but I get looks.  I get looks at Mass as well.  Smiles and looks.   I know I look weird.  How many people have you seen with bilateral AFO's walking around?  I worked with people who had a chronic illness, and I cannot remember seeing anyone.  I have taken an informal poll.  No one has seen anyone with these braces. 

I feel the looks of pity in the eyes of the other mothers when I pick up my kids from school.  I have to walk to get Gabe.  I could let Naomi pick him up and bring him to the car, but he is always so happy to see me.  I see looks of pity at Target from other mothers doing their shopping.  Looks of pity at the park. 

I understand.  I smile.  I know.  I would be looking you the same way. 

How I can relate to Oscar Pistorius

DISCLAMIER:  I am by no way saying that he is not guilty.  He may have done this horrendous killing.    The story is shocking and sad no matter how it happened.

How does an overweight, 36 year old, mother of 3 relate to an Olympic Athlete?  This summer, we watched the Olympics.  It was so good to watch Oscar Pistorius.  We talked to the kids about him.  If this guy can qualify for the Olympics, you can do anything!  He is inspiring. Look what he has overcome.

When I got fitted for my braces (before his arrest) and I was feeling so bad about my life.  Brett reminded me about what we had said to the kids.  I know the situation is different.  But I did think about it.  I can do this.  I can do anything. 

Then after his arrest, I was watching some news program laying out the events of the story.  In some interview, they said that he did not have his blades on at the time of the shooting.  And that he felt vulnerable.  That has stuck with me.  I know how he feels.  

Brett starts his travel season soon.  I have never liked it when he is gone.  I feel alone.  And  vulnerable.  And now more than ever.  I was trying to figure out a way to sleep with my legs on. I can barely walk without them.   I cannot get up quickly if something were to happen.  Sick kid.  Fire. Tornado.  Someone breaking into the house.  Maybe I should time myself and see how quickly I can put them on.  Maybe that would make me feel better.

 Maybe…..

F@&! cancer

I miss my Dad.  So much some days it hurts.  I had a dream about him the other night. My therapist (who I have recently broken up with when she told me that possibly I got this disease because my body was trying to tell me to slow down.  WHAT THE FUCK?!?!?  There are lots of people who are way busier then me that do not have this crazy rare disease.  She pissed me off, and made me feel like this was my fault.  Maybe this was some projection because I DO feel like this might be my fault.  Way too much psychology for me.  Maybe this is a separate blog post.)  and I were talking about how to get through the process of getting stuck with the IV.  My blood pressure goes really high when they do this  I can feel myself getting anxious as I get out of the car.

She was wanting me to go to the place I love best.  I went to backyard of my parents house in Estes.  I can feel the summer breeze, smell the air, and I see my dad on the back porch waving at me. I practice visualization before I go to sleep at night so that it easy to achieve while under stress (it really works by the way.  My BP was super high the first time around, the second time after the visualization, so much better.)   In the dream, I could see him, telling us to come up for dinner.  He was grilling hot dogs and chicken.  I was sick in this dream, and I was trying to get to him.  I was struggling to get to him.  I was using my cane and having trouble in the backyard going over the rocks.  I was yelling at him to come and help me and his back was to me and he would not come.  I know, more psychology.  I get it.  But I still hate it.

I just want to call him and get his advice.  Advice on how to deal with our new life and how to pay for all of this.  Advice about work and where to live.  He was so good at listing and helping send us down the right path.  He would never really tell you what to do. He would just nudge.  Like when I wanted put off going back to college for a  year after my freshman year.  He said that I should go back, if I did not, he was worried that I would not go back.  That is what he did.  He said he would always go back and he never did.

He spent 31 days in the ICU. I was only there for 12 of them.  They were hard days, and I was not there for the hardest.  The last day I was there, my dad was having a hard time getting comfortable, and I was trying to help put a pillow under his hip.  I asked him what hip he wanted the pillow under, he said he did not care.  And I yelled at him.  I told him to start caring.  He was sort of out it that day and he never acknowledged my outburst.  Nick walked in moments later, I kissed my dad goodbye, told him I would be back over Labor Day and I would make him some chocolate chip cookies.  And that was it, the last time I saw him alive.  I was back over Labor Day weekend, but it was for his funeral.  No cookies. 

It is hard to do, but I choosing to not to remember those days when he was sick.  I remember my dad holding my babies.  I remember working with him at Big A.  I remember one day I hit the building with the old white beat up truck we had.  He ran out, and just started laughing at me.  I can still see his face in the rear view mirror laughing.  I can see him when Nick is sitting on my couch, crossing his legs.  I can see him in Gabe.  Gabe shares his way of wanting to figure out how things work and how to make things work better. 

So fuck cancer.  Fuck it.  I want my dad back.  My healthy dad. 

3 women

I spent time with three of my friend this week. On Monday, I spent time with the newest friend. Although I feel like I have known here forever. I met her and things in my life sorta started to fall apart (I promise I don't blame her for any of it!). She stuck by me. She has called, sent flowers, and watched my kids. She has made us meals and offered to clean our house. She is wonderful and kind and makes me want to be a better person.

Wednesday was my middle friend's birthday. She and I met at work. She was newly engaged and I had just moved in with Brett. We got married a year apart and started our families around the same time. Our kids have grown up together. We have been through a lot together. Deaths of parents, births of babies, and the cleaning up of middle school showers after a MS 150. You never know how close you are to someone until you have picked up pubic hair covered soap with them. She is sarcastic and funny and shares my passion for baking.

And Thursday was spent with the one I have know the longest. College was a wild time, and that is where we met. She knows more about me than Brett does. The 3 times I have been to see male strippers have been with her. She has a new marriage and a new baby and she is full of life. She has a passion for children and she loves kettle chips and she is so thoughtful.

The best part about these three is that they remind me that I am still the same inside. It is easy with all of them. And I love them all. During this time, it has been very easy to hide. I can say I need to stay home because I am too tired. It is hard to take my kids (especially Isaac) places by myself. These women won't let me hide. I am so lucky to have them by my side. This week, I did not feel alone.

Mothering

For the first time since November 1, I am mothering my children alone.  Back to the way things used to be before.  Except not.

My mom was here a very long time this winter.  I spent a lot of the time she was here sitting.  Checked out in the chair in my living room.  I got out of bed every day (except the day I had the lumbar puncture, and maybe the day I was diagnosed).  But she mothered my children.  She loved them, read to them, went to school functions, did it all.  When Brett got home, she stepped in there as well.  She helped with dinner and homework.  All the while, she watched me go through the pain and the lack of a diagnosis.  I cannot imagine watching my child suffer.  But she did.  My mom has been through hell, to say the least.  I know she will come out on the other side.  To say I love you and thank you seems far too simple.  

My brother was here.  My inlaws. My sister.  They were all here for a short time.  Now it is all up to me.  And, I do not want to count my chickens before they have hatched, but we all made it through alive.

It was not the week I was worried about, it the long haul.  We are looking at moving closer to family. Brett is tired.  I am tired.  We will need help getting through the treatments.  I have always been a planner.  This disease is making it very difficult to plan our life.

But today, and tomorrow, and forever, I am being a mother.

F@&! my legs

It is time for shorts and skirts and dresses and capri pants.  And I have these ugly leg braces.  I have a choice to make.  Do I want to be hot all summer and wear jeans?  Or do I not care?  My legs sweat with the braces on.  I was wearing long socks to help the rubbing on my shins, but I was way too sweaty now that it is warm.

We put away the jeans and got out the above mentioned clothes. I got ready for work and put on a knee length jeans skirt.  I look so silly.  These braces look like soccer shin guards.

Yesterday morning, we were headed to softball practice.  I put on capris and was looking in the mirror.  Naomi came in and asked me what I was doing and I told her that I was looking at myself.  She said that she thought that I looked good.  And I said that I did not think I looked good.  She said that the leg braces mean no walker, right!?!  So who cares Mom!  She gave me a big hug and left, unfased by whole conversation.  She is wise beyond her years. 

I have to be ok with walking around like this.  I need to find some new shoes.  I need to get some clothes that fit.  But for now, for today, I am going to be ok with this.  I am going to show my kids that being sick is nothing to be ashamed of.  I went to practice, and I got stared at, and I just smiled.

So here I go, I am coming out, legs blazing....

(notice my husband has GIANT pruning shears on the step? I think he may be trying to kill me.) 

And here is a picutre of me and Brett and Isaac just because they are just too cute....

Update

It has been a long week.  My treatment went well Monday and Tuesday.  I overdid it on Wednesday.  I am tired.  I have to work this weekend. I had a mental breakdown yesterday at physical therapy.  Heidi, my PT, was wonderful.  She let me cry and got me some tissues and some water.  I stretched through the breakdown.  She made me laugh by saying that she was impressed that I was stretching though the tears. 

I sorta thought about running away.  I know it would not help, but there is something about driving that helps sometimes.  I did not have a great plan.  I did not run away.

My sister and nieces have been here.  She cleaned our house.  She helped me put away our winter clothes and put our flannel sheets away. 

Isaac is back with us.  He promptly made himself at home and ate the heads off all of everyone's Easter peeps.

Kids start back to school on Monday, Isaac and I are on our own. 

Life carries on... 

Pushing

I can feel the hand of my dad pushing me some days.  On my shoulder pushing me in the right direction.  Patting me some days.  Pushing me towards physical therapy when I don't want to go.  Towards IVig.  When I am doing my taxes.  It does not happen everyday or in every situation when I need a push, but in some.  I never hear him.  But I can feel him.

 

I can feel the hands of my kids on my hips pushing me too.  Even when they are not there.  Making me get out of bed.  Pushing me think about the future.  Sign them up for ball, swimming, and preschool.  They are not there, and I feel them.

 

I feel my brother and sisters. My mom.  Helping me move though my day.  I don't hear them. 

 I feel them with me.  My friends.  All of you.  I feel you all pushing me. 

 

The times that I don't feel like I can do it anymore, I feel my husband lifting me up and walking a while for me.  He is telling me he cannot do this alone.  He has no idea how strong he is.  He feels my pain.  Even when he is not here, I feel him. 

 

And sometimes I feel very alone. 

Back to "the chair"

I went to see the neurologist yesterday. I will be headed back to "the chair" next week for another 2 day infusion. My sister will be here with so the kids will be taken care of. That makes is easier.

Let me explain the process. I get IVig at an outpatient infusion center at a local hospital. It is on the 5th floor right next to the cancer center. There are lots of sick people there. Thanks to Google and my ability to snoop, my guess is that most of them have cancer. There is a row of 8 chairs lined up with a table and curtain dividing them. Not much privacy. There are two nurses and a tech running the show.

I go in as early as I can because the infusion takes all day. I get premedication of Tylenol and Benadryl. I get my blood pressure, pulse and temperature taken. If I am lucky, they hit a vein on the first try. If not, I get a few more pokes from a nurse who has been around a long time. She is old school, she puts hot towels on my arms and slaps me around a bit. She usually gets the vein.

And then they hook me up. For 8 or 9 hours I sit there. I get the infusion of the "zombie blood" (Brett and I are watching The Walking Dead, so he starting calling it Zombie blood, nice huh?). IVIg is actually purified protein from thousands of plasma donations. It is in a small clear glass bottle. It is clear, and is the thickness of maple syrup.

I get very sleepy during the infusion. It is probably the Benadryl. By the end of the day I feel like I am moving in jello. It is a weird feeling. I can walk now, so last time, I walked around a little. I watched TV. I read a book. But it is hard to concentrate on anything.

I have a lot of feelings about IVig. Before the second round in January, I seriously considered not doing it. If I knew where this ended, I would not do it anymore. If I knew that this was as sick as I was going to get, I think I could deal with my lack of mobility and numb hands. But as we all know, there are no guarantees in life. When I ask the neurologist, he has no answers. He has said to me that he understands how frustrating it is. He says of course there is hope. He wants me to get better. Why else would he have become a doctor?

I came clean with Brett and told him I was not going to do the IVIg in January. He was not on board with my plan. Neither was Mandy. So I went, and I got really sick. A headache like no other. I was chilling and shaking. She nurse slowed the infusion down, and I felt better. By the time I got home that night, I could not move. I laid in bed in the same position for a few hours with the worst headache I have ever had. The next day, I felt like I did after a night of tequila shots in college. I had to go back for the next infusion and I told the nurse. She slowed the infusion rate down, and I did much better. And I did much better in March as well.

Since my last infusion, I have gotten a lot better. I feel more normal. Is it my super awesome physical therapist and all of our hard work? Is it the IVig? Who knows? We just keep on keeping on...

Jesus and coffee creamer

Our kids go to catholic school. At the beginning of Lent, we were eating breakfast one morning and talking about giving something up for Lent. I was trying to encourage them to make a positive change. The kids were talking about not fighting with each other or doing a good deed every day. My mom shared with them that she wrote a letter everyday during Lent.

I was trying to talk about the significance of sacrifice and Lent. How it was important to be mindful of making a change or choice everyday. Giving something up or changing a bad habit is about being mindful of making a sacrifice like Jesus did. I was not doing a very good job explaining it.

Naomi asked me what I was going to do for Lent. I told her that last year I gave up coffee creamer. The yummy good stuff that tasted like you melted a candy bar in your coffee. I would go through a bottle a week! See my problem with sugar!?!

Naomi looks at me, with the most plain and serious face and says "What does Jesus have to do with coffee creamer?". It seemed so silly to her. And it was a big deal to me. But guess what, I never went back to coffee creamer. Well, we had a brief affair during Christmas, but I was celebrating Jesus's birth. And nothing says Happy Birthday Jesus better than Peppermint Mocha.

Cold

The cold makes me hurt. If I get too cold, I cannot warm up. My feet, although numb, are also very sensitive to cold. When they touch the side of the tub, it is like they are on fire. When I go outside and it is cold, I have trouble walking. My legs will not move.

Right now, my doctor and I are waiting to see when I need another round of IVig. I woke up on Sunday and my pinky was numb. During my last round of IVig, on the first day about half way through, my pinky woke up. It has been so cold, that I am hoping that my numb pinky is because of that. Not because I am having a relapse.

There is hope for remission from this. I read 1/3 go into remission and never need treatment again, 1/3 go into remission and then relapse, and 1/3 never go into remission. I know I have only had 3 treatments, but I was hoping not to have to go back for another round of IVig so soon.

It is going to be 58 on Friday. We will see.

F@$! Stairs

I fell on Friday night. Brett had headed up to bed and I was right behind him. I was holding my book and was trying to walk like a normal person. You know, one step, one foot, next step, next foot. I forgot that I could not walk up the stairs like that. I have to take them one at a time. Right foot first, then left foot on the same step. I use my arms a lot to pull myself up the stairs. I made it to the last step, and I tried to step up with my left foot. And my knee gave out. And I fell forward, thank goodness.

Brett looked out of the bathroom and asked me if I was ok, and I was. He asked me I wanted help, and I said no. So he went back into the bathroom. I love that man. He knows me so well. Better than I know myself sometimes.

I tired to get up. I couldn't. I sat in the hallway a while. My only choice was to crawl into the bedroom and pull myself up on the bed. And I laughed the whole way there.

There are stairs everywhere. They slow me down. They make me fall. They remind me of what I can't do. I have moments of feeling like I could become bitter about all of this. But for that moment, I decided to laugh.

Lucky

I have read different statistics about my disease. On the official website it says the incidence of CIDP is 1 to 3 in a million. I have had weird stuff happen to me. I had encephalitis when I was 8. I am dyslexic. I had mono when I was 22 and was in the hospital for 10 days. I had 3 giant babies.

Through all of these things, I have always felt lucky. Some people say blessed. I used to say that. Maybe I will get back to saying that. I am not ready yet.

My wise sister Mandy said that our family was very lucky. Sure, we had our shit. Everyone has their shit. We, as a family, always landed on our feet. And then my dad got a super rare form of cancer and died. And it was like a hole was ripped in our universe. And our luck changed.

But yesterday I felt lucky again. A NICE man at Costco, who grew up in Colorado, noticed I was struggling to unload my cart, and helped me put my groceries in my van. And I found $20 on the ground!

I am going to buy a Powerball ticket today. I think our luck is changing.

Do you feel lucky? Do you feel blessed? Or not? Please share!

Bed

I have done a lot the last two days. Not a lot for before, but a lot for who I am now. Field trip, a doctor visit with bad news for Gabe, and dinner with friends. And we got the BIG hospital bill in the mail yesterday. I went to physical therapy yesterday and talked to her about my pain. She reminded me that the field trip was like a 5K for me. My feet and legs are killing me. I am paying for the last two days.

I have hard phone calls to make, dishes to wash, and clothes to fold. I have kids to wake up and breakfast to make. And I just want to stay in bed.

There was a moment when Naomi was running around at Science City. She ran up to me and hugged me and told me she was so glad I was there. All kids want is for us to just show up. Be present. The rest will fall into place.

So I am going to get out of bed.

Field trips

I am going on a field trip today, and I am scared. Yet another thing I took for granted before. I am scared I am going to fall and embarrass my child. Are my legs going to cooperate today? Am I going to have enough energy to walk around all day?

I am not in charge of keeping track of any kids and I am not driving. If I poop out, I can rest. This is just another thing I will have to try.

In other news, I wiggled my toes on my right foot for the first time since November. My advice, wiggle your toes and go on all the field trips you can.

F@$! Sugar

I have a love/hate relationship with sugar. I really love chocolate. There is lots of research about sugar and inflammation. Gluten too (watch out gluten, you're next to go).

I am putting this out there into the world, Monday, I broke up with sugar. Now, I am not going crazy. I am still eating fruit. And I am drinking tea with a little honey. I am just giving up the junk. The refined stuff.

I needed to do it. IVig is not cheap. We have a HUGE out of pocket maximum. Which, thanks to two rounds of said treatment and leg braces, we have already hit. If I putting so much money into my body, why am I also eating so much junk? Someone on the CIDP Facebook page wrote something about with every bite we take we are either feeding our illness or healing ourselves. That has stuck with me. And as Brett put it to me last night "Why spend so much on IVig, just to get diabetes later?".

I brushed my teeth this morning, and the toothpaste tasted really good. This is not going to be easy.

PS - I SURVIVED THE FIELD TRIP! We are so lucky to be in a school where parents look out for one another! I had a good day. I am however paying for it today. Lots of pain, and I have 2 hours of physical therapy to look forward to this morning. I will make it!

F@$! that guy at Costco

After my first round of IVIg (this is the purified plasma protein that I get to help treat the CIDP, more on this later) I was feeling better one Friday night. So Brett and I decided to head out on a hot date to Costco. I was still using the walker at that point, so Brett had a plan to push me around in the wheelchair.

We pulled up to Costco and there sits a motorized cart. I hop in, and off we go. As you can imagine, I am hesitant to use one of these carts. I am young. I don't belong in this cart. But I felt so free. I could shop without getting tired. I could get my own groceries. In the past I have silently judged people riding in these carts. Lazy. Fat. Really, you can't walk around the store? I was quietly Mrs. Judgeyjudgerson.  Can you see where this story is going?

We were finished shopping, and we're headed to the check out and we passed this young couple. As we passed them, I heard the man say "There is another fat person using one of those carts." He was talking about me. Brett did not hear him. Brett said he had to go to the bathroom before we checked out, so I headed off to find this guy.

I had lots of plans for this asshole. I was going to yell. I was going to be nice. I was going to tell him what my family had been through the last 8 months. I was going to run over his foot with my fatness in the cart.

Brett came back from the bathroom, and asked what I was looking for. I told him what had happened. Brett said he would go find the guy and punch him in the face.  I told him I thought that was a bad idea.  We paid for our stuff and went to dinner at Panera.

I am getting a lot of perspective.  Too bad that with perspective, I lost my ablilty to run. Not that I ran before CIDP. But I had dreams of running.  Oh, and  I also learned that my sweet husband, with maybe a tad bit of misdirected anger, would punch someone in the face for me.  Learning that might be worth losing the ability to run.