Friday, September 16, 2011

Embracing Technology and a Small Update

Yay! College is just around the bend. Nervous for sure but also excited to finally start exercising my mind. Before I left for my vacation I met with student disability services. The person who I talked with seemed to know exactly what I was talking about when I said “fatigue, flare, fog, pain, unpredictable…” and had excellent options for me. Some higher power must have helped match my disability advisor and I because the only other people who have ever completely understood my limitations would be other people who have lupus. Needless to say I thought I was going to have to fight tooth and nail to have the allowances I need to be successful at college. It was exactly the opposite. My disability advisor had options I didn’t even know existed. So in a way I am greatly put at ease about going to college with a disability.

For those of you who do not know, I recently purchased an Ipad. One of my options is to record lectures with an Ipad or other device. I am going to take full advantage of this. After a certain span of time my mind turns into marshmallow fuzz and I can no longer comprehend what I am hearing. Quite literally it is like listening to the teacher on Charlie Brown. Wha wha whaaa wha. In many ways I surprised the disability advisor. She had never heard of using skype before for online office hours or using webcams for lectures. At internet high school I pioneered the use of skype and webcams so I wasn’t too surprised when she looked at me like: that’s an amazing idea, why didn’t I think of this? We both learned something from our hour and a half meeting.

My English class this year is online. Just another way I am embracing technology. The less I have to travel and spend my spoons in a classroom, the better off I am. I do not know exactly what college 101 english is like online but it can’t be rocket science. Besides, English is my strong suit so I am not horribly concerned about things. Technology will be used to the max in my college career.

Now otherwise how am I doing? I am actually doing okay right now. With the weather shifting and temperatures dropping Mr. Raynaud is starting to make his appearances again. Oh goodie gum drops. In terms of pain management… things are also going okay. I always wish for better but things are tolerable as they are right now. Fatigue has been underlying and at times intense. Really nothing new but living with this is getting horribly old.

During this summer I participated in a pain management study through UW and Children’s. I really did not benefit from it but others in the future might benefit from the information researchers gathered from me. I always say I hate being a lab rat but at the same time if me being a lab rat will help another person like me… I will do it. Life is just too short to do otherwise.

I invite everyone who follows/reads this blog to come and join me on the 15th of October for the “Mad Hatter Lupus Walk.” It is located at Warren G. Magnuson park in Seattle. If you cannot make it, sad day! There is always an option to just donate if you like. I will be there with a fabulous hat I created this week.

Wishing everyone many grand spoons!


  1. Very cool. It sounds like things are on the right track to get you started on a positive note. Hope you like up your iPad. I just LOVE mine. I think you should go to Staples or Office Depot and get yourself a digital recorder they're small, easy to use and can hold a lot of data. That will be the best way to capture lectures. I've used the free dragon speech recognition app but it's so-so and I don't think it will be real good for class lectures.

  2. Awesome! I am so happy to hear you have an outstanding adviser to work with in college. I am so proud of you and excited for you as you venture into the land of college. :) You will be a gift to the school, profs and other students.

  3. Liz- Yes I do love my iPad and I bought a lecture recording app for college. I am going to give it a whirl here soon.
    Kimberly- Thank you :). I hope I am:).