Rare Disease Day 2012

I'm a day early posting this, but there is a reason. I want everyone to get a chance to take part in the activities and posting early will remind everyone of the things they can do to spread awareness.

The Rare Disease Day web page is asking people to upload their photos and share their story. You can do this by following this link: Tell Your Story . People from around the world are sharing their stories and spreading awareness!

Are you on Facebook? Good! G-PACT is asking everyone to change their profile picture to spread awareness of the rare diseases that can cause DTP. Here are a few pictures you can use. Just right click on them, select "save picture," and then upload it as your profile picture on Facebook!  If you are creative, make your own. I bet one of your friends wouldn't mind borrowing it.



Have you written your congressmen yet? G-PACT has written a letter you can download and send as is, or add your story to it before sticking it in the mail. The document can be found by following this link: Write Your Reps! The document includes the names and addresses of the representatives to make the process just a little bit more convenient.

And last, but not least,  if you blog we'd love it if you would write a post for Rare Disease Day. Share your story, make a collage of pictures that show what your life is like, whip up a video (OneTrueMedia is a good website to make one!), write a poem, or post a Wordless Wednesday photo that says it all. Then share the link on G-PACT's Facebook Fan Page.

Have any other suggestions of things to do? Leave a comment and we'll share them!

What does Penicillin have to do with Lemons?

I don’t know when it happened, when I lost it, but I did. I used to take two steps at a time, now I only take one and feel like I am going to fall when my legs are fatigued.

I don’t know when it happened, when I lost it, but I did. I used to plan things so I knew what I was going to be doing each day for several weeks at a time, now I only plan a couple days because nothing stays the same for long.

I could go on and on, but it would be pointless. I’ve lost a lot the past several years, and I’m learning that I lost more than I thought.  It slipped right out from under me when I wasn’t looking. I held on to a lot important things, but lost the little things I wouldn’t miss.  Not at first. The realization something is missing hits me at random times, like yesterday when I was going up a flight of stairs and remembered I used to skip steps. Or, this morning when I realized five years ago I would have planned my entire week by now, especially since I am flying to Washington D.C., on Friday. But, if I look at things another way, I’ve gained a lot.  And that is actually one of the things I gained. I gained a way of looking at things, a “when life hands you mold, make penicillin” kind of way.  What? Lemons don’t fit my personality.

I made penicillin out of being diagnosed with GP. At first I raised funds for G-PACT, and then I signed up to be an official volunteer. I was still being me, just in a different way. Prior to being diagnosed with GP (and for awhile after) I volunteered as a running coach for Girls on the Run, taught Taekwondo at my dojang, and worked for a no kill feline rescue. Since I wasn’t feeling well enough to go out and do those things, G-PACT was an outlet for my desire to volunteer.  And by doing what I usually do, working hard, I gradually fell into the role of public relations director.  

The point of the post, if you haven’t figured it out, is not to tell you to look on the bright side. You’ve probably heard it a billion times by now and I can guarantee a few of you groaned when you were reading this. No, the point of this post is actually to tell you that you need to find a way to feel normal. To do the things you used to do, even if it is in a different way. Do you like to volunteer? Then find a volunteer position you can do from your home. There are tons of them out there.  You just have to think outside the box, come up with something. I don’t like lemons, but I still found away to tell you to look on the bright side, didn't I? *groan*

A Letter to My Cells

I thought I'd post something I had published on my personal blog a couple years ago when I was frustrated with how things were going. I felt writing a letter to my body was the best way of expressing my feelings. I still do.

Originally published Tuesday, July 7, 2009 on "The Road I'm On"

Dear Body, Lets Be Nice to Each Other

Dear Body,

For the last 27.27 years we've been living together. From the first cell division until now we have never been separated. You were there when Cassie tried to end our relationship by feeding us French toast that fateful day oh so long ago. You where there when I was catching toads in the yard in Friend, and that day I tried to rescue a bee out of the kiddy pool in Crete. Sorry about that, by the way, I didn't realize it would sting you.

Remember our first baseball game? I bet you were thankful I had that helmet on when it started to hail. Who knew my first time at bat would cause the sky to fall?

Now that we are older I think it is time to talk about our relationship. You seem to take joy in finding ways to make life complicated. First it was my immune system. You had to teach it that pollen was a bad thing. Didn't you know that pollen was just the plant version of sperm, like the little guy who donated half our DNA? Its a good thing. All those plants you see out there were created, in part, by pollen. How can that be a bad thing? They are so beautiful. Then you had to go teach my lungs that trying to strangle me was fun. I really could have done without that. Now you've taught my stomach and intestines that it is okay to take the day off. Don't you realize that this creates a fundamental problem for you? That little hexose, you know, the one the glucose transporters use to give energy to all your cells comes from the digestive tract. It is derived from food.

I know that I can be rough on you, asking you to do things like get up at 5am when you are still trying to create dreams. I push you to run 4 miles on tired legs, go on bike rides when you rather be sitting on the couch relaxing after a long day, and force you to flop around in a pool of cold water. I know deep down you know that you were made for these types of things. Why else would you be so good at it?

How about we call it a truce? I stop pushing you so hard, and you start teaching your components that they can stop being so fickle? Now, I'm not saying I won't push you, but maybe I'll be a little less intense? I'll take an extra day off here and there, and give you a little more TLC now and then? I know you enjoy a good long hot shower, that is when we have hot water.

Sincerely,
Brittney

p.s This doesn't mean we won't be sitting in the ice bath tomorrow night after speed training. You know your quads and hamstrings really need it.

Lessons Learned: Choosing Doctors, PAs and other Members of your "Medical Team"

This week's post is a tad late, but I think fate dictated I am sitting down this morning to write it instead of Sunday. Why? Because I spent the last couple of days visiting with different types of health care professionals. Each play a role in my care, and each of them left me with a different opinion of their usefulness in my care.

My first stop was my primary care physician. I've seen her for a little over a year and a half.  She's seen me in numerous different stages of being sick and has helped me get through most of it unscathed. She acknowledges my educational background by saying things like "as a clinician you know" when discussing her thought process with me and also acknowledges that I know my body best by asking me what I think needs to be done. I appreciate that, and it makes my life simpler because I can be open with her.

• Lesson: Find a primary care physician who listens to you, respects you as a person, and lets you play an active role in your health care.

My next stop was seeing a new registered dietitian (RD) at our local hospital. I've seen five RDs in my life and I have found that their usefulness is limited because they don't know a lot about chronic illnesses outside of diabetes, celiac, IBS and some of the inflammatory bowel disorders. What I had forgotten is that it is nice to discuss my diet with someone who knows nutrition inside and out. They may not know what I can tolerate, but they can give suggestions on balancing carbs, fat, protein and finding ways of sneaking in nutrients I may have overlooked. Given the fact I am having blood glucose issues her ideas on combining carbs and protein in each mini-meal was helpful.

• Lesson: Even if you have worked with an RD before, don't be afraid to see a new one (or go back to your old one) and bounce ideas off them. That is what they are there for, and you will both learn something.

What was next? Seeing the physician assistant at my neurologist's office. I have to admit I don't like the neurologist I've seen there very much. It isn't that he is a bad physician, it is more our communication skills together. Seeing the PA was refreshing. Why? She's female. I do much better with female health care providers. I ended up seeing one of the other neurologists since the PA wanted them to assess me too, and since I was relaxed instead of uptight it went okay.

• Lesson: Pay attention to what gender of doctor you work with better. Maybe it doesn't matter, but if it does you might be able to develop a better working relationship with your provider.

My last stop was at the pharmacy. Like a lot of you I visit the pharmacy often because it is nearly impossible to get my all my medications refilled at the same time. That means I know the pharmacy staff well and they care how I am doing. I was picking up a new med to prevent migraines and the pharmacist and I got into a good discussion about migraine control. It was a refreshing to be able to spend time discussing the medication as well as other techniques to reduce them.

• Lesson: Find a pharmacy that sees you as a person and not just another prescription. Pharmacists have a lot of information they can share with you, if they have time to do so.

Visible Invisible

Patients with chronic illnesses that aren’t outwardly apparent are caught between two worlds, the healthy and the sick. They look healthy the majority of the time, yet they live the life of a person with significant medical problems. From the surface they look like everyone else. For example, say they are a freshman in college. They go to class and blend in. No one sees them as different. They are just another teenager out on their own for the first time. Their professors think that too, so when they don’t come to class on Monday or Friday they think “they probably partied too hard.” Unless the student registered with the disability office or was proactive and told them differently, the professor doesn’t have any reason to think they have a chronic illness and were truly sick. They aren’t in a wheelchair, they aren’t on oxygen, they don’t look “sick.” This puts the student at a disadvantage because they have a real reason for missing class repeatedly, but the professor doesn’t know that. The professor is not likely to make an exception and give an extension for an assignment. The other side of it is that the student looks like the other students. They don’t have the stigma of being sick. They don’t have to worry about their classmates thinking they are going to catch something, or leaving them out of something because they are uncomfortable being around them.

I’ve lived life with an invisible illness for years. I have had some outward signs of being sick, being pale and underweight, having trouble breathing and coughing a lot, etc. But I also ran, taught martial arts, volunteered at an animal shelter, was a teaching assistant in college and worked at a veterinary clinic. Unless I was caught on a bad day I was just like my friends, my classmates, my colleagues. I liked that. Granted, a lot of people knew I had medical problems but only those who had to know. Now that I’m in my last year of veterinary school I’ve had to let more classmates know of my limitations so we are all safe, but out in the real world (if there is such a thing in vet school) I was normal. That is until now. That is why I’m writing this. I have a sign that I’m not like everyone else that you can see across the room, at least when I am walking. And that makes me uncomfortable.

I’ve been questioning myself if the reason why I am uncomfortable is truly that I think people will either baby me, avoid me, or try to be over protective or is it that I am not comfortable with myself. With the change that places another limitation. As a population I think patients with DTP, lupus, RA, diabetes, cystic fibrosis, chronic fatigue syndrome, depression, mitochondrial disease, asthma, MS, etc spend a lot of time worrying about what other people think and not enough looking inside at how they view themselves.

The problem is being visible and invisible in your mind at the same time.