Too many thoughts, too little time.

Archive for November, 2014

Do You Even Listen to the Words Coming out of your Mouth?

We got our dog, Trixie. She is a great fit for our family. Laid back enough not to ransack the house. Sturdy enough not to mind playing with the boys. A daily walk or two and she’s happy, but she’ll run with me if I want. She is not aggressive at all, she likes to sleep and be pet. And, when the house gets too busy, which is often with as many preteen boys run in and out, she puts herself in her crate and rests. She is definitely my dog though. If they guys give her a command, she looks at me to make sure it’s ok to listen.

Saturday, I believe, I was sitting at the table. I had some treats for Trixie, I snapped my fingers, and she came running. I held my hand up, she sat and stayed, until I tossed the treat. I patted my shoulders so she knew it was ok to jump up, and she did and gave kisses. Mike laughed at us. He said “You really did get the perfect dog. But, why wouldn’t you. Everything about your life is perfect. It always is. ”

I just stared at him…I finally said “Did you seriously just say that to me? Really? This week?”

He acknowledged that he had put his foot in his mouth, but explained why my life was still so much better than his. Luckily I wasn’t trying to win the victim contest, so, I resigned and let him have the title.

Brad and I found a church we wanted to try. We’d been once before, while not impressed, we weren’t against returning. And, since I was using a cane, and we were running late, we decided to go to a church we had already been to. Mike wanted to go with us, because his soon-to-be-ex wife is still sleeping with a married guy and still going to their old church, so he’s looking. I explained the church was pretty liberal, which according to some things he had expressed, I didn’t think he’d like. But obviously, he was still welcome to come with us.

So, we went. And, we parked next to the car with the Coexist bumper sticker. We were a couple minutes late, and I sat in the back, they followed me. We sat next to two women who were holding hands. At the welcome, we shook hands with the guy in a pink ruffled shirt, orange plaid pants, and more metal in his face that I have in my computer.  People hugged me, and introduced themselves, noticed we were new. We listened to the sermon, about how people pray. That too many people raise their hands to the sky, and pray “Here I am God, bless me!”, when we should be saying “Here I am God, use me. Send me!”. They gave the call to communion, and to my shock, my husband left me on the pew (not out of jerkiness, but out of my wishes, I was feeling wobbly), and he went up. When he came back, he seemed a bit choked up. I felt a bit choked up. I asked what was up, he said he thought he found where we might belong. The closing song is always a hymn, in two different languages. This week it was English and Swahili. Mike, spilled his coffee in the sanctuary. Even though signs said no drinks. He played Star Wars games on his phone during the sermon. He texted his friends. When it was time to leave, we walked out of the sanctuary, through a side door. We got almost to the main doors, when the associate pastor came running to us. She said she was us, noticed we were new, wanted to make sure she had said hello and introduced herself. She asked about us, talked about why we were there.

We walked out, and I asked Mike, “So, what’d you think?” and he said “Well, I don’t know. I mean, I need to do a lot of research about their beliefs and everything, to make sure this is a doctrinally sound church. I don’t know. ” Which was really kind of what we thought he’d say.

Brad and I both bristled, privately, at this statement. Doctrinally sound. Mike and I are gonna have a talk. According to the Bible, my sister is supposed to be stoned for what she’s doing. Oh…but the Bible didn’t really mean that. We have been to any churches that made us feel so crappy, we almost gave up.  You know something really perverse? You go to a lot of churches, you read their websites…and they say “You are welcome, as long as you aren’t you. As long as you’ve never done XYZ. As long as you completely stop, immediately, any sin we don’t think you should struggle with, then we love you. If you don’t meet these criteria, well, sorry.” I went to this church, I felt amazingly welcome. I read up on their beliefs, and it all came down to “Come, worship, improve day by day, we love you.” and I honestly though for a second “Wait, you want me? This must not be a real church. You guys must not be real Christians if you’ll let me into the club” And, apparently, Mike agrees. How sad is that?

Just for fun, once I got home, I looked up what I think is our church. Mike’s church. my parents church.

Missions/volunteer

UCH (Ours)-serve meals at the food bank, so the staff can have time off. Has a 20 acre field that is sold off every year, the profit goes to the food bank. Works with several long term places to assist mentally ill individuals stay off the streets. Volunteers with the AIDS task force. Part of the interfaith hospitality movement.

NH (Mike)- same tab at the top. Right beside their “donate online when you can’t make it in” tab. They have a preschool, and they pick up people for church who can’t make it in on their own.

CLC (My parents)- this one, I love. Help/volunteer. Click for more info. Do you want to help out in the church? We need ushers and volunteers for parking lot duty. In a disaster, they help the red cross pack a bus of emergency supplies. and, you can donate money to Uganda. Once a year, the high school class flies to the Dominican Republic (or insert someplace else) to teach vacation bible school to poor kids.

You know part of why we looked into this denomination? Because I wanted to go to a church that DID something. That helped. That was Jesus’ hands and feet. That knew they were an answer to a prayer. I want to love you so well that you, on your own, ask me why.

 

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hourglass

My friend found the perfect word. Surreal. This is all just that.

I think I’m doing ok, though people keep asking if it is just an act. No, it isn’t.

I’m not that upset. I am almost glad to have a name for this. So, I can explain sooooo many things.

My frustration and fear comes from the uncertainty. Like, before there was a chance I this was a fluke and I could brush it off. now, I know it is here to stay.

I’ve been reading. I’ve found a few places where people are talking. Things that made me happy to read. The woman who ran the marathon yesterday, the other woman trying to get an adaption for her crossbow so she can hunt deer this year. People just being them, with a little bit of help. But, that doesn’t change the, what seem to be common, stories of people that woke up one morning paralyzed. No warning. And, a month later woke up another morning and were fine. Or who woke up blind one morning. And, days or weeks later opened their eyes again and could see.

That part is the scary part.

I’ve been weak and feeling vertigo for over a week, that is part of why I went to the hospital. So, I thought I had this figured out. Then last night, I was in the middle of a sentence, and all of a sudden it felt like I was talking around a mouthful of those giant-s’more marshmallows. I said that, and Brad said I sounded fine. But it was incredibly weird. That lasted a couple hours. Then I had to explain to the kids. That my charging cables (nervous system) was busy being chewed on by little mice (immune system). And, just like with worn cables they owned, a lot of time I won’t even notice there is some damage, everything will work fine, just a bit chewed up. But, sometimes when you put your iPod on one of those crappy cords, you have to wiggle it around, or drop the cord over the lamp first, and even then it will only work sometimes. So, if I had a moment like that, just know i wiggled the cord a bit too much after plugging it in, and I lost charge. The meds are the guys trying to splice the wires together again, and wrap them in tape, but it takes time. They seemed to understand and be happy with that explanation.

Another unexpected thing…I got in the shower the other morning, and forgot how to do it. Yup, almost 30 yrs old and I forgot how to get the soap out. So, I cried. I even recognized, in my head, “Stop, take a deep breath. A shower is NOT actually detrimental. Even if you do it wrong it’s ok. nobody will know.” According to the MRI, I am having a really bad flare up, with a LOT of active infection, so, that is why everything is so weird right now. Soon, I will be fine.

Today I slept in, which was nice, ever since the 9th, I’ve been falling asleep at 1am and waking up at 4am. Last night I slept from midnight to 5, then off and on until 8.

Everyone keeps telling me the meds will make me ravenously hungry. That hasn’t started yet. And, I’ve been craving healthy food. I’ve never craved a nice, leafy, green salad more than when the hospital somehow messed up the cottage cheese.

I’ve walked the dog. Not far, on .25-.50 miles, and it’s really slow, but I did it.

I cooked yesterday, lunch and dinner. Real food, not box meals. I love cooking, so it was nice that I got to. Though, Brad and Mike watched me like hawks, and hovered behind me, in case I lost my balance.

Today I got out of bed, and for the first time Brad didn’t jump up to help me. So, I got dressed and came to the kitchen, had breakfast. Even been walking normally a bit, without the cane.

And last night I came to the realization, that if this had to happen, I’m so glad everything has played out like it has. now, instead of ten years ago. Now, when I have a supportive and loving husband. Now, when the boys are big enough they can’t be carried around anymore. I can’t even imagine how scary it would be to hold a new baby, and not be sure if your arm would keep working. Even 4 or 5 years ago, I think this would have been so much worse. I would not have had as good an attitude, at all. I had no hobbies, nothing to look forward to getting back to.

And, I’m going to just state, my husband works for the best company. He is ON this week’s schedule, that way nobody looks at it and says “Oh, Brad isn’t working, he can go fix this”. But, anything he does is optional. They moved around these multi-million dollar accounts for him, in case he had to take me to the doctor.

Honestly, I feel like a 90 yr old woman. Curled up, napping on the sofa, in my cardigans and house shoes, my cane by my side. Sometime’s I have no idea what is going on. Sometimes the weight of Brad’s arm is too heavy on my shoulders. Hopefully, by December, I’ll be back to normal.

Well, That was a Shock

I came to the ER on Sunday morning. I just wanted to make sure this numbness on the right side of my face wasn’t a stroke. I wasn’t terribly worked up about the stumbling, the dizziness. There is a reason my husband called me Grace for a long time. Because I was a klutz. I’m always bruised or falling down. Tripping over my own feet, or worse yet, tripping over nothing.

When they said they wanted to do an MRI, I still wasn’t real worried. Glad they took me seriously. I came out of the MRI, a Dr came into the room and said “You have MS, a neurologist will be in soon.” and she walked out. An hour later, another Dr came in. “Have they talked to you yet?” I said “Just to say I have MS” she said “That what I came to tell you, well, a neurologist should be here soon.” And she walked out. A nurse came, told me I was being admitted. I told the kids I’d be gone a couple hours. It’s now been a full day, and no one will tell me anything.

It took 36 hours to talk to a neurologist. I found out it would be a 5 day hospital stay. Another couple MRIs to confirm the diagnosis. A steroid IV drip that is making my body think it is diabetic, so, insulin shots 4 times a day, along with the finger pricking. Blood draws. The meds make all my food taste metallic, and I’m at a high fall risk, so they won’t let me move from the bed. They put an alarm on the bed, it took 3 days to convince them to turn it off so my husband could hug me. I walked today without a walker. A month ago I was climbing mountains…today I had to practice walking around a couple cones on the floor of the PT room. Today my IV messed up, as the kids came in. My arm was covered in blood, my oldest cried, I told Aussie to take them to Starbucks. They left, the nurses tried to give me a new IV. 7 tries. I look like I’ve had the crap beat out of me.

I have questions, but I ask them, and all anybody can say is “We have no idea”. 80 different symptoms that come and go as they please. Some people work for 30 more years with few problems, some people end up paralyzed in a wheelchair in 5 years.

I’m torn. I don’t even know how i feel. Part of me is relieved. Like, maybe now I can take some medicine, and I won’t fall all the time. My clumsiness and forgetfulness won’t be a joke. When I just want to go to bed at 9pm, I’m not old. I just need to. Now there is a name, and I know what I’m dealing with.

But, I’m also scared, and a bit mad. And, I keep breaking down and crying in the middle of sentences. This isn’t fair. I’ve been working so hard on getting healthy, on being more active, and now my immune system wants to destroy my nervous system? What the hell? I don’t want to pity, but that doesn’t mean I’m not mad.

I’m scared.I’m never scared, so for me to say it is a pretty big deal.

And, it doesn’t seem quite real…I’m reading about all these people. About how they are always so tired, how they are always in so much pain. I don’t have that, so I must not have real MS. I mean, I had symptoms Monday, and went to piloxing and was fine. Like, clumsiness isn’t a disease. Right? So, I’m fine.

Maybe I’m in denial.

Or, maybe I’ll do what I always do. Pout for awhile, and move on. The few people I have told all say “I love your attitude”. Which is nice, but what other attitude is there? I’m only 29. I’m not gonna park my ass in a wheelchair and let this define me.I’m not letting this undo all the work I’ve put into myself over the last couple years.

And to be honest, one of my first thoughts after this was “Well, hell…I finished college, with good grades, recently, while actively being brain damaged. That’s pretty amazing.”

I want to go home. I want to see my kids. I want to walk my new dog. I want to sleep in my own bed and stand up when I feel like it, and stop eating crappy hospital food.

Now it seems, if I want to keep this under control, I need to avoid stress. Which, I’d already been taking steps to refuse it anyway, so that’s good.

I told Aussie yesterday…”I haven’t spoken to my parents in 4 months. 120 days. That isn’t that long. In those 4 months, I’ve been to a half dozen states, 2 countries, hiked mountains, decided I wanted to change my name to Katie, got a tattoo, got a pit bull, and found out I have MS. Apparently 4 months is a very long time.

So yeah, in more interesting news, I have a tattoo

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It’s an airplane skywriting a heart.

And, 2 weeks ago we went to the animal shelter and came home with a new family member. This is Trixie.

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She is a 5 yr old pit bull/lab mix who is pretty much in love with me. If Aussie tells her what to do, she looks at me to make sure it’s ok. And, as odd as it sounds, I’m really glad we got her now. Someone to keep me moving on bad days. She has to be walked I can’t just ignore that. She’s sweet as can be. She likes walks and kisses. She is protective of me, and plays nice with my kids, and my little nephews. She has been fine with the boys friends. She doesn’t seem to be aggressive with other animals, but she is definitely on guard. The shelter was worried about giving her to me, because the shelter was in another county. The county I live in has a zero tolerance policy for pit bulls. If she gets away, if she bites, if she shows any aggression, if another dog attacks her and she fights back, she will be put down. So, I promised, she is an inside dog. She doesn’t get tied out,  she walks with a harness and a leash. They let me take her and I’m glad, she seems to be a good fit for us. She has enough energy to go on a run, she loves walks, two or three times a day. Then she comes home and wants to cuddle and chill.

So, yeah, that’s what is new with me.

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