Hallelujah

I can take showers now. Honest to God, standing up, fifteen minute long normal showers.

It’s been so long since I’ve been able to do that. I’m always on a shower seat or in a bath. I know its a very small thing, but it made me feel human again. It must be close to four years since it’s happened.

It really is the small things that mean the most.

I was so excited I texted everyone I knew. Im such a dork 🙂

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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……

Things I can do now that I couldnt six months ago

Stand up long enough to make a sandwich

Sleep on my side a few hours a night.

Lay on my stomach

Carry my 15 lb dog across the apartment

Blow dry my hair easily

Walk to my car without a break

These are HUGE things to me. Im excited about adding bigger things to this list.

On the road again

Well, now that I’m writing I want to finish updating!

First of all, my vacation……

I had a perfectly wonderful time. I loved Oregon. I want to move to Portland. It’s pure magic.  This is what I see outside in Texas. I took this picture about 5 miles from my house.

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And these are some pictures I took in Oregon.

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I was able to do most of the things I wanted to do.

FYI: The least handicap accessible place was Roloff Farms. Who would have thought?! Though they did make a good effort. But gravel covered hills do not equal good wheelchair accessibility. They were amazing otherwise 🙂

I went to southern California. I was able to see quite a bit of the Redwoods from my car.

The only downside to the whole trip was the unbelievably large amount of homeless people I saw 😦  In almost every town we stopped in. Some very old men in the cold and rain. I very rarely see anything like that here. I gave money a couple times when I could. I’m still thinking about them though.

Good times a comin’

I did want to at least let everyone know how much better I have been doing. In fact, I feel better than I have in years. And I’m on an almost non existent dose of Prednisone.

It’s all thanks to the Enbrel. In the last six weeks or so, it has finally started doing it’s job! Haha.

I received a comment from a woman who was warning people about the risk associated with the drugs. She developed cancer from it, so she is obviously very concerned about it.

In fact, it touched me so much, I debated about whether or not to even say how wonderful it has been to me.

I know the risks involved, and I’m not in any way downplaying what happened to her, because I know it was horrible, and I understand why she would be against it. But it’s still a risk I have to and am willing to take.

Because my quality of life is changing sooooo much for the better. I’ve gone from almost bed bound, to the point where I am now. I’m actually getting out occasionally and visiting friends and family. I went on vacation! ME!

Even a few months ago, it was torture, absolute torture to even get to the bathroom. I’m not saying this for pity. I’m saying it because its a fact. My larotab dosage has gone from  20mg a day(that didn’t even kill the pain. Just took the edge off) to almost nonexistent. I think I’ve taken a dozen 5mg tabs in the past six weeks.

I’m starting home physical therapy now. My knees are stuck at a 29 and 31 degree angle. 100 is completely straight. So my knees are stuck at about a third of the way bent.

I’ve been walking flat footed! For the past couple of years, I’ve had to walk on tip toes to keep my balance.

I don’t think I can possibly put into words how amazing these little things are.

I babysat today and I actually picked up a 3 year old and carried him kicking and screaming to his room. I DID!!!!!!!!!!!!!!

Two years ago I was babysitting and broke down crying when I couldn’t lift a 7 month old baby out of her crib.

I can get out of bed in the middle of the night. There is still pain. But bearable pain.

I’m very happy right now.

I’ve been looking into finishing school. I know I’m not ready yet. But maybe by Fall 2009?

In fact, I think if my knees were not so bad, I would find R.A. to be something I could live with. Of course, its not easy, but after the HELL!!!!!! of the past three years, I’m finally finally FINALLY feeling like I can do this!

So hell yea for HEALTH INSURANCE! I still know I would never had had to suffer like this if I had it. HELL yea for physical therapy. And HELL YEA for Enbrel!