Wednesday, October 28, 2009

Thank You, Body

Dear Body,

Thank you. The conference is over and the exam is completed. And, thanks to the snow, class this afternoon is canceled. You may crash now.


Dear Body

Dear Body,

I know I have more than just a little unfair to you over the past few days. I know you are extremely close to reaching your breaking point. But if you could just hold out another couple of hours through my oil and gas law exam I would truly appreciate it. Because it really would not do to have my hands stop working halfway through.

Thank you.


Sunday, October 25, 2009

2009 Energy Justice Conference

I haven't posted on this blog in a while because I have been a COMPLETE CRAZY PERSON over the last few weeks getting ready for the CEES Energy Justice Conference this weekend. The conference was Friday and Saturday and luckily all the hard work paid off and it went extremely well.

There were 40+ speakers from all over the world, 200+ attendees, a musical prelude, a keynote address, 11 sessions, 2 interactive theatrical sessions, two breakfasts, two lunches, four coffee breaks, two receptions, and a speaker's dinner!!! I was the "conference coordinator" so I was in charge of making sure the ENTIRE THING went well.

Honestly it was WAY more work than I should have taken on, considering I am also a full time student and this was my first semester back to school and I still don't have the RA completely under control. But the conference was like another Great Wall for me - I didn't think I had any realistic chance of actually doing it, but somehow I did. Despite the limitations of my body, I can still do a lot. But, to be fair, I also had a lot of help from a fantastic group of my classmates! And I couldn't have done it without them!

I think I may still be running on adrenaline at this point - because I still feel pretty good and the crash I was expecting has yet to occur. This is a very good thing because I also have a final exam on Wednesday morning!! I will most likely crash hard after that, but if I make it through the exam that will be good enough for me.

Take that, RA!!

Saturday, October 10, 2009

I Am Not Typing This Blog Post

I am not typing this blog post. Instead, I'm using a program called MacSpeech Dictate. I'm wearing a microphone headset, like Madonna or something, and I'm speaking into it what I wanted to type.

I just started using this program last night, and so far it's going pretty well. APL decided it would be a good idea to try out one of these dictation program so that I could use my hands a little bit less. I'm not certain that this program is going to work for formal things, as you have to say the punctuation marks that you want to use out loud. It's a little bit awkward and I think it will take some getting used to. It also wasn't exactly cheap, I think it cost about $200. But if I can take my law school reading notes this way, it'll save me hours of typing which will hopefully help my hands hurt a little bit less.

The program isn't perfect. Sometimes it misunderstands what you want to say. For example, last night when I said APL's name out loud, it typed "awesomely cheap." Also, since you have to say the punctuation marks you want to use out loud, I have no idea how you actually get it to type those words...

As you can see by those three periods above, every time I said the word. It used a punctuation mark but I couldn't get it to write the word. It this making no sense? I can get it to type the word by saying something like "there was a period in my life when" but otherwise if I say the word. It puts a. I know this paragraph made no sense whatsoever. I'm still learning how to use all of this.

But, for the most part I'm really happy with the software so far. I think all work especially well for taking notes when I'm reading as that essentially consists of copying things out of the book anyways. Although, I have to admit I feel a little bit strange sitting alone in my room talking to my computer. Especially since I have to say all the punctuation marks I want to use out loud. But, I think once I get used to it, the hours of typing that I save using this software will probably have my hands hurting a lot less.

And that's a very good thing.

Friday, October 9, 2009

Today's Lesson

Laying on your back + 46 needles stuck in various parts of your body + hacking cough = a very bad plan

Thursday, October 8, 2009

Does Not Compute

RA = massive amounts of joint pain

Sucks a lot, but at least makes sense

Massive amounts of joint pain = complicated treatment

Fair enough.

Complicated treatment = Methotrexate (six or eight pills a week for over a year) + Remicade (infusions tried for six months) + ENBREL (currently once a week injection) + Prednisone (to help with pain while we figure out the rest of it)

Wow. That's a lot of drugs. Not to mention the ones I am on to help with the emotional aspects of all this. Oy.

Prednisone = Inflammation reduction + fat face + 30 pound weight gain


Prednisone + Reduced ability to exercise + 30 pound weight gain = High blood pressure at age 26


High blood pressure at age 26 = Need to take meds to control blood pressure

Like I needed some more meds to add to my crazy cocktail!! But I understand the need.

Meds to control blood pressure = hacking cough

Wait....what? My blood pressure meds are giving me a....hacking cough??


Wednesday, October 7, 2009

Thank You to an Optimistic Stranger

Upon the conclusion that my support system in Boulder could be improved, I've started trying to brainstorm how I might be able meet some new people. My sister suggested joining a book club, but I think that extra reading probably isn't a good option simultaneously with law school, because I'm not even getting my assigned reading done. I really don't need help procrastinating. So I'm still having trouble coming up with ways to make new friends when I feel so icky.

Then I started looking into RA support groups, thinking it might be good to meet some people who would be more understanding about what I've been going through. I found a support group on facebook, which doesn't exactly serve my needs to meet people in Boulder. But I thought that at least I might be able to find someone to talk to a little bit.

There was a post on the group's wall from a member who had just gotten some bad news related to her RA, so I sent her a message telling her that I understood how she felt and I hoped things would look up for her soon. Considering that I was a complete and total stranger emailing her totally out of the blue, I was delighted when she wrote me back the same night!

She thanked me for my note and told me that she had also been diagnosed at age 25 - which was 12 years ago. While she admitted to feeling a little bit hopeless sometimes when new flares developed, she went on to say that she just didn't let the RA rule her life. Instead, she said she runs her own life and thinks of RA as a tag-a-long. While RA wasn't the life she would have chosen, she said she has had a blessed life for the past 12 years.

Her email was scary and uplifting at the same time. Scary because she is still dealing with new trials and tribulations from her RA diagnosis 12 years later. And I have to admit that it is a little bit overwhelming to think about being in a position similar to where I am right now for the rest of my life. But, on the other hand, her message was also really uplifting. Even after dealing with RA for 12 years she was still able to be really optimistic and supportive to a complete stranger who emailed her totally out of the blue. And that is inspirational to me.

That's something I am going to try to remember next time I feel like giving up. If she can love her life after 12 years with RA, I can find a way to love my life today.

Thank you for your help.

Tuesday, October 6, 2009

The Spoon Theory

I found a story called "The Spoon Theory" that does a really good job of explaining what it's like to live with chronic illness. Technically, the story is about Lupus, which is a different autoimmune disease than RA. But the analogy is still quite good. If you ever wonder what it's like to fight through pain and fatigue every single day, I recommend reading this story.

Needed: Bachelorette Party, Stat

When I have a bad day, it really gets me thinking about my support system. Unfortunately, the conclusion that I have come to is that my support system here in Boulder just isn't enough. Poor APL and River have done everything they can think of cheer me up and get me feeling better, but sometimes I think they both need a break from me. Or at least some help.

I honestly wish I had some more friends - particularly girlfriends - here in Boulder. But what they don't tell you about being a grown-up is that making friends is actually really hard. Especially when you can't quite do things people your age consider fun - concerts, bars, parties - without feeling like a grandma who is too tired and achy and wants to go to bed at 8:15pm. To make friends you have to be a fun person that people want to be around. No one wants to hang out with 26-year-old grandma on the weekends.

Don't get me wrong - I have girlfriends who I know love and support me. The problem is that they are scattered all over the country and I hardly ever get to see them. Or even talk to them, for that matter. I wish I could just have one weekend with them to recharge my spirits - some ice cream, girly movies, pedicures, time to talk...

This leads me to the conclusion that it's pretty stupid that you only get to have all your girlfriends together for a big fun weekend after you get engaged. I mean, to be fair, I am a bachelorette RIGHT NOW! So why can't I have a girls' weekend now?

I could really use it.

Bad Days

I never give up.

But some days I wish I could.

Monday, October 5, 2009

Probably Not a Sustainable Treatment Method

Last night I discovered that vodka is just as effective for pain management as most of my RA drugs. Maybe more effective. And certainly much cheaper.

Friday, October 2, 2009

46 Needles & Me

Much to my displeasure, I spend a fair amount of time getting friendly with needles. I stab myself once a week with ENBREL and I am considering the option of taking my methotrexate by injection too. I also have to get blood drawn for my rheumatologist once a month to make sure the methotrexate isn’t destroying my liver.

Those monthly blood tests, in addition to other tests occasionally ordered by my primary care doctor, have had me in and out of the University Lab at least once a month for more than a year now. Since it is usually the same guy drawing my blood, as I’ve mentioned before we’ve gotten to know each other and become pretty good friends (which is a big improvement from how I used to treat lab techs in my childhood!) Favorite Lab Man always does a pain-free job of drawing my blood, hardly ever leaves a bruise, and is super-sweet to me.

When I went to visit Favorite Lab Man for blood tests last week he asked me how I was doing and I told him honestly about the trouble I have been having with my hands. He asked me if I had ever considered acupuncture. I told him I had thought about it, but never really done it. Then he recommended an acupuncturist to me that had treated him and also used to be a nurse at Student Health. He swore by her treatment and said she really knew what she was doing. He said didn’t know if acupuncture could help me, but if it could she would be the one to see.

So I took Favorite Lab Man’s advice and I had my first acupuncture appointment this morning. The acupuncturist was a super-nice lady and seemed very knowledgeable. She told me that she actually treats another patient, an elderly woman, who has RA and that the acupuncture really seems to help the patient. Apparently this patient used to take ENBREL every 10 days but now she only needs it every 15. She said she has also treated other patients with autoimmune issues, so she said it was worth a try to see if it would help me.

And was it ever weird!!! It was a really strange combination of modern and ancient medicines. In total she stuck about 46 tiny, single-use needles into my body. The needles themselves didn’t really hurt, but sometimes they caused this weird, zinging sensation. She stuck most of the needles in the backs of my hands and my fingers to help with my hand pain. Then she hooked a couple of the needles in my hands to this little machine that sent a small electric current between the needles, which felt really weird. (Not going to lie, it reminded me of the theaton thingy in the Scientology episode of South Park) But, on other needles on my hands, she stuck little balls of herbs at the top and lit them on fire like incense. So there I was, with 20 needles in my hands, some hooked up to electricity and some smoking some ancient herbs.

She also stuck some needles in my knees, shins, and into my feet. She told me that while Western medicine sees RA as an autoimmune disease, Chinese medicine views it as a “dampness” in my body that needs to be pushed out. So the needles in my legs and feet were supposed to work on that. She also asked me how I slept and I told her honestly never very well. So then she even stuck a few needles in my scalp and in my ears that she said would help me sleep.

I can’t honestly say whether or not the acupuncture treatment worked. For one thing, she told me that sometimes you don’t see results until after two or three treatments. And I still have some pain in my hands – but obviously I am typing this post and I am not crying so maybe that is some sort of improvement. Who knows. For now I am keeping an open mind about acupuncture and going to see her again next Friday. We’ll see what happens.

Thursday, October 1, 2009

Dear Hands

Dear Hands,

Please stop hurting.

It hurts me to do everything.

It hurts me to do anything.

You almost made me cry in class this morning while trying to type notes.

I don't think I can take much more.