I am Loved

I had a birthday this month. I’m twenty four now.

I decided I wanted to go out to eat for my birthday this year. I haven’t really done anything the past couple years. I casually mentioned it to a few people. 16 people showed up to my favorite Thai place. I felt very loved.

I just found out my dog needs double hemorrhoid surgery. Almost everyone I know has pitched in a few dollars. They know I would be a complete wreck if anything happened to her. My dog is like my child. She’s been the one constant in my life for years. She makes me smile everyday. Every morning I wake up to her little wet nose burrowing into my neck and her tail wagging. Everyone has really come through for me. My cousin has been on a crusade to find donors. And she has! And I feel very loved.

I live with my older brother. He has a form of autism. He is high functioning, but needs someone around as a caregiver. But he is the most wonderful person I know. He cares for me more than I could ever care for him. Everyday he asks me if I need anything. If he can get me a drink, or if I’m hungry. He is everything that is good in this world. Of course he is not perfect( none of us are), but he always makes me feel loved.

My best friend has been staying with me for the last month. She is trying to save up just enough to get into her own apartment. Every Thursday I have to go to aquatic therapy. I find it humiliating, and difficult. Every Thursday(even if she has to leave work) she makes sure she is there with me. She gets in the pool with me and keeps me company. She does the exercises with me and keeps my mind off of the pain. I know it isn’t always convenient for her, and that she’s busy. But no matter how much I tell her she doesn’t have to come, she knows I like it so much better when she is there. So she makes sure she is. She makes me feel loved.

I have some very precious people in my life. I wasn’t as close to anyone before I got sick. I was very much a loner. A very independent person with a one track mind set on accomplishing all my goals. In a way, being sick, and learning to accept help has allowed the people in my life the opportunity to show me how much they care. I never allowed it before. I never gave them the opportunity. I had to reach my lowest point to let people in. It seems so silly looking back now. 

As long as I can remember, I have always thought that the best thing I could ever do was rely on myself. If I was completely self reliant, then I could never be disappointed in people, because I would never need them.

I didn’t even give them a chance…… They haven’t all disappointed. Some of them have made me feel very lucky to have them in my life. So I know at least some good has come out of all of this.


A Light in a Dark Place

I started my physical therapy again this week.

I found myself less than enthusiastic. I’m usually in a private room, but because of overbooking I was out in the bullpen with several patients. There was a little old man on the table next to mine. He looked over at me on two separate occasions and said ” Smile! You’re on candid camera” I was beginning to think he was senile, but indulged him with a large smile. But I found out he was far from it.

At one point I was on the exercise bike and he was next to me. The nurse had given him instructions on a new exercise. He was supposed to hold the pose for five seconds at a time. So he started counting very loudly and enthusiastically. 1!  2!  3!  4!  5!

He just kept grinning at me and would let loose a small laugh occassionally. Like he was laughing at the ridiculousness of the situation. I found it hard to keep a smile off my face and whenever I looked over we would have a giggle together. The only time he stopped counting so enthusiastically was when he stopped to tell me that I was far too pretty of a girl to not be smiling. And later on he told me I had a lovely smile and I bet all the boys loved it.

The doctor was so busy with other patients that they forgot to tell him how many reps to do. After what seemed like a million, I said, “I think you’ve done forty or fifty of those!” He then laughed out loud as the nurse ran over and told him to rest and that he had only needed to do twenty.

They took me back to my private room but left the door open. They strapped me down to the table and he did some new stretches that were so excruciated, I actually left a puddle of tears on the table.

But every once in a while I heard Mr. Jasp on the bike counting for no apparent reason loudly and firmly to a hundred. Then he would start over.  I couldn’t help but laugh out loud in between the stretches. And I would hear him chuckle in response.

He made me happy today. And smile more than I ever had in there. We left at the same time and he walked past my car and gave me a wave and a big smile. He lifted me right out of that dark and mopey place I had been in when I entered the building that morning.

What a wonderful person. I hope he’s there from now on……

Reflections III

I’ve managed to make it through my entire twenty four year life span without watching What’s Eating Gilbert Grape.  Which is odd. What with my obsession with all things Johnny Depp related. I finally watched it a few days ago

Of course I loved  it.

Do you remember the scene where Gilbert wants to introduce his girlfriend to his mom. Her immediate reaction was a slightly panicked no.

She finally agrees. They are introduced and the first thing she muttered was a pitiful ” I haven’t always been like this”

It immediately brought me to tears. Because I think the same exact thing every time I meet someone new.  The first thing I always want to say is,

“It’s not my fault I’m like this”  or

“I’m only overweight because of the steroids.” or

“This isn’t me. I’m not the person I look like. I’m a different person behind the weight and the twisted and deformed joints. ”

I don’t know why but the thought of people seeing me like this is terrifying. 

It used to be easier before the R.A. made such an obvious outwardly physical appearance.

When I first got sick, I hated telling anyone. I just stopped returning the phone calls from a guy I was dating at the time. I never told any of my professors. I let my Algebra professor think I was lazy and unprepared instead of explaining that I missed class because I was in so much pain that I couldn’t drive to class.

At work when I started having to wear braces on my wrists, I told everyone it was because I was so clumsy. I was limping because I twisted my ankle.

What is it that makes it so difficult to show weakness?

And how come after everything I’ve been through I still give a crap what complete strangers think about me? I never did before.

I’ve always been very independent. I’ve always been different from people I knew. I definitely marched to my own drums. If everyone was doing one thing , I immediately felt the need to do something else. I never felt the desire to get drunk or high or sleep around when I was in school like most people. I worked in a bar, but hated the feeling of being drunk.

I always made friends with the quiet, shy, people who didn’t have anyone. I was always walking around with a novel stuck in my face even though it was “lame”

I hated people who thought they were better. I abhor social hierarchy. I abhor unnecessary and extravagant material possessions. Instead of spending three hundred dollars on a class ring I donated the money to the ASPCA. I couldn’t make myself care less if someone snubbed their nose at me.

What is it about my own physical weaknesses that is so humiliating to me? I feel like it turned me into something I hate to be. Not the sickness. But my reaction to it.

Sometimes I feel so ashamed about how I’ve gone against all my beliefs.

I’ve always considered myself a strong person.  I have been through alot worse in my life than physical weakness. But I’ve always handled it well. I’ve always been able to be proud of myself. But the longer I’ve dealt with this illness, the harder it is to stay positive.

As much as I hate to admit it, one of the hardest parts of this entire journey with R.A. is how people perceive me now.  I hate that that is how I feel. But it is.  It’s something I struggle with but no matter what I tell myself, or what other people tell me, it’s something I cant get past.

But I really really want to.

Whole new level of frustration.

Well I’ve finished my latest rounds of physical therapy.

Six weeks of pain and my knees are still not a single degree straighter.

My rheumatologist just ordered more regular therapy and more water therapy. I dont see the point though. Its miserable painful, and didnt do a bit of good.

Its just so frustrating. Puttting so much effort and hope into something and have it be a complete failure.

I cant live my whole life like this.