What will we call it this time?

I’m sledding again.

That is what we will call it this time. Sledding down an icy slope. It seems appropriate as the weather, although beautiful and sunny, has not been above freezing for the past few days.
I was hoping that it was just that wonderful thing where my lady time and my need for chemo lined up making me a hormonal mess. Sadly, I am afraid it is worse than that. My body is sore all over. I feel like I am one giant walking ball of pain. I am feeling on guard all the time. Even in places where I normally feel safe I feel like I don’t belong. I don’t feel like I belong in my own skin. I will have a breif moment of light that will quickly be snuffed out by my anxiety of how stupid my smile is, or how dumb my voice sounds, or how little I really matter. I retreat back to my own dark world.
Lately, my anxiety and my feeling of inadequacy has lead to many sleepless nights. I am not restless. I just lay there and think about all the things that you aren’t supposed to think about. I dwell on the things that I have done wrong. I create scenarios in my head of how people must talk about me when I am not around. I can hear them laugh. It is quite egotistical when you think about it. To think that I matter enough to be talked about. Then I think about that.
What if I don’t matter enough? How simple would life be if I was not a part of it. Once again, this is not a suicidal thought, this is just a thought. I have no intentions of ending my life. When I start to think about Eli growing up with out a mommy it hurts me. All I can think about is how I almost lost my life and how scared I was. It still haunts me. I think about what my life would have been if I had never held that precious boy. And it hurts. I worry that one day I will be a burden to Eli. That he will never understand his mommy like I never understood my father. That he will never forgive me. I know I am my own bag of mixed nuts and I KNOW I am not my father but I never want Eli to have memories of me that are full of fear.
And then the sun comes up. If I am lucky, Noah will lovingly take my hand and tell me to do what I need to do to make everything okay for me. Worst case, he says it through the baby monitor as he is changing Eli’s diaper. I will eventually emerge and Eli will be so happy to see me that it will set off a small spark in my heart. Sometimes it is enough for a few hours, sometimes only minutes. Either way, it is not his responsibility and it never will be. I just need him to love me. Just like I need Noah to love me. Knowing their love will be there at the end of this battle makes it simpler at times.
For now, I will go in to battle with my book on tape or binge watch some TV as my weapons because I still have not unpacked my coloring books. Noah will lay with me and stroke my hand as a tear or two roll down my face randomly and without permission. I will get through this. Just like I have gotten through every other trial of my health in my life. This is no different. I will win. It will just take time.


Champagne Bottle

This Christmas they made these champagne bottles that are filled with chocolates. One of the chocolates that they have in them are Bounty bars that they really don’t have in the states. At least not in the South. So being the loving mother that I am, I got one for Eli for Christmas. And Eli, being the loving son that he is, has shared with everyone in the house. Now they are 50% off because they are out of season. Which begs the question, when do champagne bottle full of chocolate go out of season and why? I cannot think of a time when it would be inappropriate to bring someone a champagne bottle full of chocolate. If it is appropriate to bring champagne, then it is appropriate to bring a bottle full of chocolate.  There is really no point to this post other than I am now going to go buy every champagne bottle of chocolate to either eat or give as gifts. Either way, this cannot go wrong.

Merry Christmas

Merry Christmas!

It was an amazing day! Despite how exhausted I am because I should have gotten Chemo today but had to put it off until tomorrow, I was still a very fun and productive day. Eli really seemed to enjoy opening all of his gifts. I’m not sure if he understood they were all for him and that they were new but he said thank you each time like a good boy. Noah gave me a guitar which is beyond amazing. Firstly, because it is A GUITAR and secondly, I have always wanted to learn how to play. Everyone tells me how simple it is. I know that is just everyone being supportive but for whatever reason it has put a TON of pressure on me to learn. So now, I get to learn on my own terms. I practice when I want and learn what I want. I don’t have someone rushing to teach me a few cords on their instrument in 15 minute intervals before we have to go do something else.
Overall, today was a win. I am learning a new definition of win. Trying to learn. Like I said, some stories cannot be told right now. I am working on focusing even more on the positive by putting even more positive things in my life. I think I will find the balance.
Now, to bed!

Looking for light

Maybe it’s the early nights or the cold. Either way, I cannot shake the feeling that something is not right.

Normally it is moments of sadness surrounded by happiness and light. The past couple of days have had a lot of darkness. It is not a darkness I can really explain. I feel like I am about to cry but I don’t know why. I feel like someone has told me something bad but no one has. Life is going fine, but I feel like there is a shoe about to drop that is going to feel more like a cinder block than a shoe. It’s a feeling of helplessness and uncertainty that comes with life. Selfishly, I feel like it comes even more with mine.

I find myself second guessing every decision I have made recently. I wonder if it was a good idea to move. I try to remind myself that it is easy to second guess change and that no change is easy, no matter how ready you are.

The more questions I ask, the darker it gets. I have to trust the light will come.

Stuffed stuffed animals?

I was at target tonight and evidently there is this new trend that I am not sure I am OK with.
I am not strongly against taxidermy, but I am strongly against killing animals to hang them on your wall. I do realize this is a large part of taxidermy, however there are a few WWF (World Wildlife Fund)  fans who also happen to be taxidermy fans. These people have taxidermied animals who have died of natural causes. This still sounds silly to me, but one of my favorite authors, Jenny Lawson, falls under this category.
All of this to say that tonight at Target I noticed the trend of fake taxidermied animals. Yes friends, stuffed animal taxidermy(?) animal heads. They had them for children’s room. For example, they had a swan head with a tutu around it. They even had Christmas ones that were reindeer with wreaths around their necks. I am truly befuddled by this trend. Who thought this up? Who pitched the idea for a stuffed stuffed animal head to hang on a child’s wall? Who OKed this project? I would truly be interested to see how the sales of the fake taxidermied heads are doing at Target.

Health News

This is not really new news but I feel like I am finally able to talk about it.

We all know I have quite a few health issues. PNH, Budd Chiari, Hemolytic Anemia,  Thrombosis, Anemia, Depression, Anxiety, Dermatillomania, just to name a few. (By the way, spell check says that Hemolytic is not a word. Um…yes…yes it is. I could understand if it was a name or something but it’s not!) Now I get to add Psoriasis to the list. I am lucky, in a way. My psoriasis is not overly visible. I realize that is a minor thing but for those who suffer from low self-esteem, visible scaring or deformations can be hard. I know that sounds a bit melodramatic but in a society that is constantly pushing for a standard of beauty that is almost unlivable, any difference can be crippling.
Like I said, mine is not overly apparent. This is because it is located on my hands. The down side is, it hurts. They have told me not to wash my hands as much which seems SO contradictory. I am not allowed to use sanitizer because it dries out my hands more than they already are. On days like today, when I have been using my hands all day, they sometimes will start to bleed. It makes me sad when they get this bad. It makes it hard to do things like give Eli a bath and once I have put on the steroid cream, I can’t even help him. I also cannot change his dippers which sounds like it would be a good thing but it’s one thing to not want to it’s another to not be able to. It also makes it super hard to write and type. Like most everything, you don’t realize how much you rely on something until said thing is no longer as readily available.
So, that’s where I am today. Sitting here with bloody cracked hands. I am going to go smother my hands in lotion, wrap them in socks, and hope for a better day tomorrow as we continue the packing.