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.  

F&$! Flip flops

I love flip flops.  I wore them all the time from mid March thru October.  And now I can't wear them. And I probably never will wear them again.  When you are fat, you tend to shy away from clothing stores.  Especially when you are with non fat friends.  So I loved shoes.  With a passion.  Nothing expensive.  Nothing flashy.   But I loved shoes.  Especially flip flops.

So, I was driving home, all alone, from a shoe store the other day.  I had been there with a wonderful woman who was trying so hard to help me find a pair of shoes to fit my new legs. I call them my new legs, they are AFO's (ankle foot orthotics).  They correct the foot and toe drop I have.  I have to wear men's size 10 wide shoes to make the AFO fit correctly in my shoes.  And on my drive home, without any shoes, because the only ones that fit looked like Frankenstein shoes, I kept saying out loud "F&$! flip flops, I don't need them!"

My brother in law is getting married in August.  The kids and Brett are in the wedding.  I need a pair of shoes.  I cannot wear these bright Hulk green shoes.  I need a long dress to cover up my AFO's.  I will find a pair of shoes that will work.  

A year ago today, I woke up from a nap and both of my arms were numb.  That sent me to the Doctor and down a path we never bargained for.  I was diagnosed on December 11 with an autoimmune disease called Chronic Inflammatory Demylenating Polyneuropathy (CIDP).  I have read it described as rarer cousin to Multiple Sclerosis that causes damage to the peripheral nervous system as opposed to the central nervous system.   

CIDP has taken a lot away from me and my family.  I cannot walk without the aid of a cane.  I cannot go up the stairs easily.  I am tired a lot.  Our 4 year old is living with my sister.  But it will not take away my sense of humor.  It will not take away my love for my family.  And so what if I can't wear flip flops.  FUCK FLIP FLOPS!