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.