Ramblings

My brain is blank. I am not sure if it is the new medication or what but I am truly just blank.

I saw an amazing production tonight and that was wonderful. I love watching beautiful theatre. I love watching friends at their finest. It gives me a undeserved since of pride, but I can’t help it. I am proud. I would hope that when my friends watch me in a production that they would have the same sense of pride. Nothing is harder than watching a friend who is mediocre or “giving it their best” and is just falling short. It’s not that I am not proud of them, it’s just a different kind of pride. It’s more like I am proud of their effort. I realize that all of this sounds like I only want to be friends with talented people. This is not the case. I just believe that everyone has different strengths. One thing I can say for sure is that I am only friends with kind people. If they happen to be talented as well, awesome. There are plenty of people who are talented but unkind and pompous and I would never consider them friends.

So that’s all I got tonight. Ramblings about friends, pride, and kindness.

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Missing

I want to like myself again.
Right now I feel like I am failing at almost everything I do. I don’t feel like I am caring for my mom the way I should. I find myself getting frustrated and I wonder how Noah does this when I am stuck in the hospital. I am mad at the medical field and everyone in it. I get bitter towards half ass nurses who have the worst job ever but should know that they have the worst job ever and either figure out how to do it and not take it out on their patients or get the hell out of the medical field. I can barely look the social worker in the eyes because I have asked him for a set of papers a few times and he still has not given them to me. I am afraid that the next time I speak I may explode.
I feel everyday like I should be somewhere and that I am forgetting something. I can’t decide if we are packed for real or if we are missing stuff. Let me rephrase, we are missing stuff but I feel like I am broken. Like i just don’t know how to pack some of this stuff. If I am sitting still I feel like I should be doing something and then I get so flustered that I lose control and do something pointless like eat, or look up things I want in my new house but can never afford.
But worst of all, my weight is at an all time high which has sent my self esteem to an all time low. Between not feeling like I am a capable adult and my uncontrollable desire to eat everything in front of me my life is spiraling out of control. I have been lying in bed for the past 4 hours thinking about everything from my students to where to put stuff in my new house.
Like always, I know this will pass but it always seems to be the darkness that brings the emotional darkness. Light will come. I just have to hope sooner than later.

Facebook Meltdown

I broke my #1 rule and posted a crazy Facebook post. I HATE when people post about how crazy their lives are like they are trying to get someone to say “No! Your wonderful and perfect!” I became the person I hate today. But I broke. I didn’t do it get attention but because, well, I broke. And when things break they go everywhere. Normally here is where most of me ends up but today part of me just landed on Facebook.
Here is said post:
Okay, so right now I have limited internet (aka when it wants to it will let me do something), no TV, my house is in boxes meaning I am limited to 2 pans, 3 plates, a couple of utensils, a couple of outfits, and a 1/2 empty refrigerator because we are moving we just don’t know when even though we thought we did but now we are having to jump through hoops. Also, some rehabilitation facility said ‘they cannot meet my mothers needs’, but won’t tell me what those needs are, I had chemo yesterday and should be feeling better but I am not. And I could not make it to my last therapy session (the reason for this post) There is not enough Xanax in the world to make this better.
BAAAAAAAAAAAH!
I was lucky. For the most part I think it went undetected. My Facebook tends to go that way unless I post a picture of Eli which spikes everything! But the people that did respond were genuine in their responses which was nice. I did not feel like I was being placated.
Despite all the crazy that exist I also got to have my own little level of fun today. Part of my volunteer work at the theatre is that I host the opening night parties for each production. This, for whatever reason, means so much to me. It all goes back to the feeding people and making them happy. All of the people that participate in these productions are volunteers and it feels so nice to be able to celebrate their hard work. Yes, we all do it because we love it but that does not mean that it isn’t work.
Tonight’s party was a success and that is an amazing positive in the crazy amount of negative that seems to be surrounding craziness that is my life. Being around happy people helps life not seem quite so unbearable.

2 spoons 2day

My computer is on the fritz which seems fitting because so is my body. Today I woke up with 2 spoons and had about 15 things to do. The first was go to a party of my friends 3 year old. Noah came into wake me and I was just super honest and said that I was limited on energy and that I had to work today so needed to rest. He was so understanding and was super supportive of me going back to sleep.
I felt like i slept forever and the next thing I knew I felt like i had slept the day away. Then, me being me, I felt the need to make up for it. I went to visit mom and took her and her roommate warm beverages in the cold nasty weather and then went to the grocery. This proved to be a big mistake because before i could finish dinner I felt so sick I could hardly move. After much medication I have managed to pull myself together enough to write this blog but my body knows Chemo is coming and THANK GOD because i don’t know how much more of this i can handle.
So night night for now. Tomorrow has got to be better.

How Do I Help

I need help.

What do you do when you want to help and you can’t? I honestly cannot think of anything to make things any better. I know that timelines often get screwed up. I know that life never goes the way you plan. I plan my life around chaos. I am used to it. But how do you help someone who isn’t used to the chaos. That has been lucky enough to never been thrown into the center of a shit storm but only had to watch from the outside. I feel so helpless. All I have to offer is that in my experience, you have to wait out the storm. It sucks, but you will come out the other side so much stronger. And, if you are anything like me, you will come out a little calloused but a lot stronger.

Hospital Holidays

This time of year is always rough for me. Many holiday seasons in a row were spent in the hospital for one reason or another. Once, it was Christmas Eve and I was rushed to an ER in a small town in NC and then transferred via ambulance to Wake Forest, where I normally go for treatments, to be under special care. I guess I lived to tell the tale and that in itself should be enough of a Christmas present, but call me selfish, I would have liked to try to survive the holidays with family and awkward conversation like the rest of the world instead of just trying to survive.
This year it is not me who is in the Hospital. (At least not yet.) My mother fell and broke her knee the other night. She is out of the hospital but is in a rehabilitation facility but it is horrible. It truly reminds me of a nursing home where people who cannot afford to send their parents to better care or just don’t care go. I am trying to not feel guilty because I feel like that is partly selfish. I can’t help but feel like if I had done better research/ any research then she would not be in this situation. I know I could not prevent the fall but I feel like I can do something about the care.
This is one of those situations where I can truly understand how much the situation sucks. It’s hard to be away from family around the holidays. If she is not going to be able to be at home, she should AT LEAST be in a place that feels more like a home than a low end insane asylum. I have found a place near the new house that, to be super honest, if I had to pick a place to recover, this is where I would want to be! The rooms are nice single rooms. The walls are painted warm colors. There is a bathroom, pictures on the walls, a TV, a recliner, a wardrobe and a nightstand. I know all of those things sound like silly petty details but right now, she has a nightstand, a place to hang clothes, and a roommate. The walls are white concrete and the entire building smells of urine. My first dorm was a better than this.
Like I said before, I have been in the hospital over the holidays over a few years and it is not where anyone goes for a good time. But right now, I would rather her be in the hospital than this place. It is why I am working so hard to get her into this new place as soon as possible. It’s important that she does not feel like I did over all those years. I feel like if you value spending the holidays with your family then you should be able to spend as much time with them as possible.

So, fingers crossed, I will have mom in her new temp home before we move into our new real home.

Moving Demons

I am officially convinced that moving was created by some demon in hell that likes to watch us all fall apart under the weight our own shit that we have accumulated over many years. They wait for your life to be perfect and then they whisper in your ear “You know you need a bigger house. More room would be great. Isn’t it time you bought your own place?” And you listen. Because you think there is nothing you can’t handle. Your life is amazing so why not upgrade right? But what they don’t tell you is that first you have to pack your life up in boxes so that you can’t actually use any of the things you have worked so hard for so that you feel like you have nothing at all. Then they move all of your stuff to a new place and you have to frantically unpack everything like Christmas on crack because work doesn’t give you two weeks off to open these presents. Not to mention that you have worn the same pair of jeans, 3 shirts, and 2 dresses for the past 2 weeks and people are starting to wonder if you have just forgotten how to dress yourself or if you are like that kid in kindergarten who loves her princess dress and wears it to school every day.

No but it’s good. I’m good. How are you?

scrabble

How many versions of Scrabble does one household need?

3. Evidently the answer is 3. This seems slightly ironic/sadistic/”It didn’t work if you were trying to teach me how to spell mom” for a woman who is dyslexic.

#Lessons learned while packing your house.

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.

messy move

This move may be the death of me. I am trying not to go crazy.
I am trying to remember that soon I will be in a beautiful new house. I am trying to tell myself that everything I could ever want is going to be in this big beautiful house and I am going to love it because I am. This house is amazing and I cannot wait to be in. I just can’t help what was feeling like a simple move (or as simple as moves can be), is now turning into solo adventure that I am truly not equipped for it. I just don’t have the knowledge or the energy to do what I keep feeling like I should be able to do.
First we had people lined up to come pack us and move all of our furniture. Now, the person who was going to come do it has hurt their back and is not going to be able to do it. We also have a TON of paperwork to turn in. This would all be easy if it were things that I needed to sign and turn in, but because I do not have the credit to get the mortgage, we are having to do all of this through my mother who is currently in rehab for her broken knee. So now I have to get the list from the bank guy, print the paperwork, take it to her, get her to sign it and then take it back to the bank guys office.
Not to mention all the things that come with buying a new house. We are doing a walk through with our builder and I have had to do research on what to even look for in the walk through. This list is HUGE! I am not complaining as the house we currently live in we have more outlets that don’t work than do work and when we contacted our land lord she was like “there’s a breaker flipped” and we were like “no theirs not” and then she never did anything about it.  So yeah. I’m all about the walk through, it’s just all so quickly approaching and I feel like we are SO not ready.
The biggest thing is I was really looking forward to having people to pack us and now we are having to pack ourselves. I SUCK AT PACKING. I mean like REALLY SUCK! And with the weather being what it is, I am scared to even start packing clothes. I don’t have enough boxes and liquir store only tend to have boxes that don’t have lids which, if I remember last time, really freaking sucks. Stuff falls out as you try to move and then everything slides everywhere and it’s just a hot mess.
Much like me when it comes to this move. I am just one big hot mess.