Sunday, January 23, 2011

It's too cold :(

I think I am getting annoyed with the length of winter.

I remember being little and spending time with my great-grandma. She had MS and always had cold hands. I feel like her so much this morning. To add to it, I wish I had a great sweater like her with wild cherry cough drops that're more like candy than medicine, curled up in a huge fluffy blanket. She really knew how to live with her chronic pain, and I wish she was here to show me how she did it so well.

Also, I'm kind of getting annoyed with people where I work not doing their job right. I'm starting to feel like this is too much stress for me, because I'm having to clean up after everyone *sigh*

I'm ready for my teaching job now, kthanks.

Saturday, January 22, 2011

Hospital Beds

I love this song by Cold War Kids, and it kind of describes, to me, the relationship between those of us afflicted.



There's nothing to do here
Some just whine and complain
In bed at the hospital
Coming and going 
Asleep and awake
In bed at the hospital

Tell me the story
Of how you ended up here
I've heard it all in the hospital
Nurses are fussing
Doctors on tour
Somewhere in India

I've got one friend
Laying across form me
I did not choose him
He did not choose me
We've got no chance of recovery 
Sharing hospital
Joy and misery
Joy and misery
Joy and misery

Put out the fire, boys
Don't stop, don't stop
Put out the fire on us
Put out the fire, boys
Don't stop, don't stop
Put out the fire on us

Bring the buckets by the dozens
Bring your nieces and your cousins
Come put out the fire on us

Vietnam fishing trips
Italian opera
Vietnam fishing trips
Italian opera

I've got one friend
Laying across from me
I did not choose him
He did not choose me
We've got no chance of recovery
Joy and hospital
Joy and misery
The joy and misery
The joy and misery
The joy
The joy
The joy 
Misery

Put out the fire, boys
Don't stop, don't stop
Put out the fire on us
Put out the fire, boys
Don't stop, don't stop
Put out the fire on us

Bring the buckets by the dozens
Bring your nieces and your cousins 
Put out the fire on us 

Wednesday, January 19, 2011

Too, too fast

I can't get this vision of me this time next year, in a wheelchair and not being able to do anything that I like to do, out of my head. It's like all my worries about my health and my biggest fears are being mixed in a nickelodeon spinning around in my head. And it won't slow down, it won't stop.

I think all the plaquenil is doing right now is making me sick to my stomach. And the next step is either to play with dosages or pair it with methotrexate. And I really hope it doesn't come to that. That's the one thing I've told myself I will not take. The small possibility that I might get pregnant while on that is too much to risk to me to feel better.

I guess this is just kind of a ranting post. I'm scared and there's really nothing that's going to comfort me. I wish my rheumy appt was sooner. I wish I felt better. I wish that I could shake this feeling that things are going to get worse soon, that I'm going to get sicker as soon as my moving plans in summer happen, that people are going to resent having to help me more, that I'm going to become a burden.

I think I'm just tired and ready for some relief, sleep, wine, a massage, or a nice crying session... which I seem to want to do at work today. And kind of have. *sigh*

I just wish I was normal, more than just about anything right now.

Monday, January 17, 2011

Break is over already???!?!?

I'm not ready to go back to school. Well, kinda though.

I always struggle with the idea of school. Having been homeschooled for so long when I was little, part of me loves being in a school and being around professors and other like-minded people. Learning is something I love so much, and I wouldn't have it any other way.

But I also know that this means I'll have less time to rest and more time spent working and studying hard. I like being busy, but I've also learned lately that me being busy isn't always the best thing because I don't take enough time to rest and take care of myself usually... Sometimes I just can't.

I have a rheumy appt on the 31st and I'm going to see if he'll fill out paperwork to get me into the disability services at UW. It shouldn't be a problem, I don't think. I also need to see if he knows a good opthamalogist because I don't want to have to go to Milwaukee for my appt in March if I don't have to. I also want to play with dosages a little bit here - I don't think the Plaquenil is doing as much now. Hopefully that works and I don't have to switch meds... though if I do I'd rather it be now. My left knee is so swollen that it's making my pants fit ridiculously.

Tomorrow we have our follow-up fitness thing, and I'm honestly worried about being able to do anything. Hopefully it's more him showing us workouts and assessing our body fat and such. I'm not sure I want to know what any of that is :-p

Oh well, going through crazy things like that not alone for a change is really nice.

Here's to a fun day of syllabi and assessments!

Saturday, January 15, 2011

Oh holy crap

I haven't been able to work out again since the fitness assessment. And I think my body is rebelling.

Also, I found a massage therapist close to work that has a lot of training in how to deal with fibromyalgia, which her mom has. Even though it's not quite the same, I think it'll really help my Still's if I can get in to see her at least once here in the next little while.


I am so ready for school to start again. I ordered the textbooks that were listed for now. I hate how long it takes for profs to put those up.
And I finally get to go get new tires soon, which is so wonderful. I'll be glad to not be slipping and sliding around as much in the snow.

If I don't get to go see the massage lady today, my plan is yoga (as much as I can do right now), shower, and probably bowling. Oh, and I might go see if I can get a netbook tonight because my laptop keeps acting up and it's pretty bulky to take to classes all the time.

Friday, January 14, 2011

Sympathy

So it's really difficult to have a chronic condition. It makes it so tough to do normal everyday things, let alone workout. But the boyfriend and I joined a gym last week. Along with our memberships, we get free fitness assessments. We went through part one together last night, and it kicked both of our asses.

The thing was, I did everything that my boyfriend had to do - with the exception of like four more steps pushing this half balance ball across the floor. I totally could not finish that. It sucked. And then the trainer made Theron finish it for me. Poor guy.

We were both sore as hell afterwards last night. Theron's hip was killing him. But it was one of the best things I've ever done, and I'll tell you why.

As I was leaving the boyfriend's, he told me he admired me for doing everything he did despite hurting all the time. It was pretty much the nicest thing anyone's ever said to me.

:)

Sunday, January 9, 2011

Imma make make make make you sweat

I enjoy random song references.

The boyfriend and I went and got memberships to Anytime Fitness. We figured it would help us both if we went together and kept each other on track. It's kind of amazing. I have worked out everyday since we got the membership and I feel so good. I've been walking/running and biking mostly, to get in my cardio and work on my leg joints which tend to be my worst.

I also went and bought a yoga mat and have done that just about everyday too. And I finally got back to meditating after not being able to because of stress.

Needless to say, physically I feel better than I have in a long time. I know I shouldn't actually be running but I just love it so much. And since I'm still doing okay, I'm not worried about it :)

But I've had some really nice things going on at work lately too. And in my personal life. It finally feels like everything is on the same page. We'll see if that keeps up once school starts on the 18th. I really hope so. I kind of like this idea of things going right for me.

Thursday, January 6, 2011

Unacceptable

I'm kind of in love with the woman who wrote this. Here are just a few of my favorite spots, but please please please go read this for yourself:

Often, when going through the process of diagnosis for juvenile arthritis… one of the potential outcomes parents get to chew on for awhile is Cancer. Leukemia was one of the diagnoses we were testing for when Caitlin was hospitalized with high spiking fever, swollen joints, white blood cell counts off the charts etc. When cancer was ruled out – we were so very relieved. This is very common and I’ve spoken to so many parents who have been through the same thing. One mother, though, had remarkable courage when she told me that sometimes, she wonders if cancer would not have been better. Before you judge, you should know that her son has one of the worst cases I have ever seen, and as a young adult, has already lived over 15 years in excruciating pain with no sign of relief in the future. He struggles with depression and mustering the will to live…. So please understand where his mother is coming from when she wonders if cancer might not have been easier. Either he would have been cured… or he would no longer be in pain. That is a powerful and courageous admission….and reminds me all the time of how unacceptable arthritis is.


...


It is not acceptable for people to give up their dreams, and their mobility, and their health. We should not tolerate willingly this loss of quality of life… this financial burden, this tidal wave of malady.


...


But what it boils down to for me is something like the serenity prayer….God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

Sunday, January 2, 2011

Mmm Sleep

Well, the new year is here... and so is more swelling.

I rang in the new year playing Red Dead Redemption in my boyfriend's apartment. On a side note, that game is really fun, but I find that - like the GTA games - it gets to a point where I can't really do big missions anymore. Oh well, the boyfriend isn't too bad at those. Yay teamwork!

We did a really fun thing this year in our new abode of Madison - the US Bank Eve celebration. It's more geared towards kids, but shoot for $5 a person why would an adult pass? Probably because of the lack of alcohol, haha. But it was great. The bank had places set up all over Madison that the one $5 wristband would get you into. We enjoyed some nice ice skating (complete with a nice skate sore for me), petting zoo animals, and a trolley ride through downtown guided by the first mayor! And all in glorious 40 degree weather. It only lasted two days, but I miss it so badly.

Yesterday, we went bowling too. The boyfriend is pretty good at that, but I somehow have the gift of spinning balls without really knowing how. Go figure. I had a margarita, so I'm blaming my low score on that :)

Off and on last night, I slept for about 11 hours or so, ending up sleeping at the boyfriend's an unplanned second night. I kind of feel bad about it, only because I know it is difficult to sleep with me haha. But more seriously, I'm starting to feel more fatigue from my RA and the meds I'm on too. And I'm starting to feel the toll it's taking on me. I just always worry that I'll be too busy dealing with my own physical pain to notice how things are affecting the people closest to me. I'm stuck with pain because of what I have, but the people I care about the most shouldn't have to suffer for that. And that's why I act like I'm always okay. But I'm starting to learn that even my super-ability to do that is starting to have limits.

Sometimes it's hard to tell when how I'm acting is normal or not too. More and more lately I kind of feel zombie-esque. It doesn't seem to matter how much sleep I get or what else I have going on either. It just always feels like I'm waiting on something that's not there. It would be nice to know what it is, and when I'm gonna get it. Seriously.

And I'm still swelling, so I think I might need to up my steroids. I might play around with it myself before my doctor's appointment at the end of the month and see what helps. I should've known that 5mg/day wasn't going to be enough without me being all placebo-effected. Bah.