Life

29 01 2012

Life gets busy.

I’m the type of person that isn’t happy if I sit around all day. So I often find myself with more to do than I have time for, but that’s how I’m happiest. It leaves me little time for updates and blogging though.

I’ve been going to a new church and working on getting connected in a ministry for people in their 20’s. We have been focusing on telling our stories lately, the why we are who we are stories that explain so much. It is incredible how willing people are to share and how honest they are.

I started to think about what makes my story and so much of who I am comes from what I’ve been through and experienced. That means so much of who I am comes from my disease. I have been made stronger through my weakness and I have been taught to have faith through those moments as well.

I wish I had been able to think about and verbalize my story today, but I’ve been having an emotional day and all I could think about is my grandma. That hit me hard and I got all teary and so I needed to cut it short and move on.

I’m really thankful for the opportunity to meet people who legitimately care. As I was sitting in a circle of girls I didn’t know, crying my eyes out and being all awkward, someone passed me a Kleenex. People have a way of being supportive without even saying a word, and I am blessed continually with people in my life who help me experience that. I am blessed with people who care from the bottom of their hearts and are willing to take on my pain as well as their own. That is amazing to me.

So as busy as I am, I am also being filled up with love by people that I have known forever and by people I have just met. I hope that today you have someone in your life that you can build that kind of relationship with and that you can love them as they love you.





Tysabri

24 01 2012

Today was my first day of Tysabri.

First of all, it was the best IV I’ve ever received. This nurse was amazing. And two hours later, I was out the door. Simple.

If this is what my future looks like, hanging out for a couple of hours once a month, well heck, I’m for it.

It’ll take quite a while to feel the effects, but I’m on my way! It’s fascinating. Such a little bag of meds can last for a month and cause so many changes in your body. This stuff must be pretty powerful.





Avoidance

15 01 2012

I haven’t posted in quite a while. Since my fantastic news about my last doctor appointment.

I’ve been struggling with what to write and what to share. The day that I had that great news I learned that my grandma was diagnosed with cancer, and that the cancer she has is really intense and fast moving. This has been tough for us all. Our family is small but we love each other fiercely. It’s hard because we don’t live in the same state, but I want to be able to see her as much as I can right now.

My grandma is an incredible woman. She taught me that dessert should always be high calorie and that friends should be treasured. She is dedicated to her church and her family and knows more people than I can dream of. She knits and crochets and cross stitches like nobody’s business and the things she creates are incredible.

What I’m trying to say is that I’ve been avoiding sharing this. I’ve been avoiding updates because this is what I’ve been thinking about lately. But our family is strong and we love each other the way we are meant to love and so I’m sharing this with you to ask for prayers yet again. These things are hard. These things will always be hard, and even though our faith is strong, we are still sad.

Today, remember the people in your life that you love and that love you. I am so glad to have the time right now to call my grandma as often as I can and just have conversations about snow and pajamas and my friends and hers. I’m glad to be able to visit and bake her a cake. I’m glad that I have the kind of relationship with her that has no regrets, just love.





Tysabri

21 12 2011

I just had one of the best doctor appointments. Seriously.

I’ve been freaked out about Tysabri for a long time and every doctor I’ve talked to hadn’t helped the situation. That drug seems incredibly scary and they had no real data to offer me suggesting that it would be a magical thing. Until today.

Today I met with my new doctor. He is one of the best doctors in the country and he’s absolutely amazing. At the University of Chicago they have more patients on Tysabri than any other institution in the country so they know what they’re doing, and my doctor is an expert on this medication. He is the first person that I’ve talked to that has been able to answer all of my questions satisfactorily and give me the information I need to feel comfortable with the drug.

So here’s the dealio.

Tysabri is a slow-acting drug and will take 3-6 months to really kick in. It works by blocking new white blood cells from attaching to the intestines and causing more inflammation, but it allows for normal immune activity in the rest of the body, which means I will be able to fight off kid sicknesses that I’m constantly exposed to. It also is one of the most stable drugs on the market and research shows that if it’s effective, it has at least an 80% chance of staying effective for over three years. Three years! That’s incredibly long for a medicine. I’ve been on Cimzia for less than two years and I really felt like that had a good life time as far as medications go.

They ran a test to see if I had the virus that causes the scary brain disease and I’m negative for it which means I have a super tiny chance of that side effect. They also said that what people don’t talk about is that PML, the scary brain disease, happens in immunosuppressed patients, i.e. patients who are on meds that I’M ALREADY ON. As in Prenisone and Cimzia. Yeah, nobody said I’m already at risk so I might as well take a  medication that works!

Once they confirm that I’m all good to go they will get me set up for a once a month infusion and I get to go off my Cimzia and azathioprine and will only be on Prednisone as long as it takes for the Tysabri to kick in. I’ll be able to slowly taper over the next few months and then that’s it. All I’ll have is an IV once a month for an hour.  Which is crazy incredible.

I’m feeling really positive about this and so is my family. We are excited about the new doctor and excited about the possibilities that this gives me. He even said that next year a new version of this medicine should come out that should make it even less likely to cause PML, and if all these things stop working, even more new medicines look likely to be ready in the next few years. So if Tysabri works like it should and gives me a three year window, I’ll have even more options to look at from there.

Thank you all so much for the prayers. I firmly believe that they work. If I hadn’t gone to this specific doctor I never would have been comfortable making the decision to try out this medication and it would have made me constantly stressed out and anxious. This is the first doctor in a long time who has looked me in the eye and said, “You’re going to be just fine,” and meant it. How awesome is that?





MRI complete!

19 12 2011

Step one of my winter break doctor edition is complete! I had my MRI this morning and somehow got away with only drinking two containers of the barium instead of three and didn’t puke. This, my friends, is a Christmas miracle.

Now all I’ve got doctor wise to worry about is Wednesday when I meet up with the new guy. I’m not sure what will come of it, especially if he doesn’t have the MRI results in front of him, so I’m blogging in part to remind myself to call my other doctor tomorrow to fax the results to the new doctor… does that follow? Doctors are confusing.

It’s beginning to look a lot like Christmas here, as long as you imagine Christmas to be forty degrees with no snow, but I really have no complaints. It’s easier to drive in, at least. And I’ve got this sweet vacation time to enjoy which my poor father is jealous of. Sorry dad.





Body Image

14 12 2011

As you know, I’m on prednisone right now. And I’ll be really honest. It makes me feel really crappy about myself.

I’ve always been uncomfortable with how I look, and prednisone makes me gain weight and makes my face puffy plus gives me more insecurities by making my moods crazy bad.

I went to a CCFA meet and greet yesterday and a woman there said after I mentioned I’m on prednisone, “Oh, I can see you have the moon face.”

What? Really? That’s something that I can see in myself but was hoping other people didn’t see. And that comment cemented this impression in my mind of a giant face. And being on prednisone makes me fixate on it more. It’s this terrible cycle of badness.

Today in class we had this really neat activity where the kids did a scavenger hunt around the school to discover facts about different countries. They wrote their facts down in a passport. As the teacher was explaining how to fill out the first page of the passport, including height at weight to make it feel more real, a girl raised her hand and said, “I don’t want to include my weight. That’s really private and makes me uncomfortable.”

It was that moment where it hit me how ridiculous I am being, and how ridiculous we allow our culture and our media to make us feel. This little girl, this seven year old, is already so uncomfortable with herself and her weight. And what everyone else sees is a smart, funny, talented little girl, and she doesn’t see that.

It is so easy for us to get distracted from all that we can offer and be bogged down with our faults. I see all the side effects from my medications and my mood swings and weight fluctuations. I see sometimes this ostomy that I have and all the baggage that my disease brings and I have a hard time remembering that I bring a lot to the table as well. That I am a good friend and a good teacher and that I put all of myself into my relationships with the people that I love.

I challenge you to think about all the ways you sell yourself short. I challenge you to think about all the things you have to offer. Remember that to others you are smart and funny and talented. Let’s work on making a culture of love and self-acceptance so seven-year-olds can love themselves the way they are.





December

2 12 2011

I can’t believe this year has flown by so quickly.

Just yesterday I was complaining about how hot it was and going to Reno and getting this new job and being nervous about meeting the kids. And now half the school year is gone! Insanity!

Yesterday the kids wrote postcards. I have mentioned that I got really into writing postcards this summer (if you haven’t received one, give me an address and you will!) and I brought some in so the kids could get in on the fun.  They were so excited.

I can’t get over how excited they are about everything. Like, old marshmallows that we used for an experiment. They were gross and dried out and not interesting at all but the kids thought they were the most interesting things on the planet. And these postcards. They planned out what they wanted to write on and drafted it on a piece of paper before writing them out carefully on a postcard that they chose. They spread the postcards out over the table and pored over them, touching them and picking them up and holding them carefully in front of their eyes. They are so serious. They chose their postcards to reflect what they were saying in their notes or because they thought the person they were sending them to would like it. These kids are so sweet.

And it was just Thanksgiving, which is my second favorite holiday. I like being thankful. I like spending time with my family and friends. And I really like cranberries.

I’m looking forward to winter break even though I’m going to miss my kids. I do have doctor stuff coming up. I’ve got an MRI coming up in a couple of weeks to check things out (yay barium!) and then my appointment with my new doctor. And then I’ve got time filled with ugly sweater parties and family and spending time with friends. I get to bake and attempt to crochet and maybe go out to Michigan and visit more of the people that I love.

I’m rambling a little bit, but I’m just happy to have all of these things in my life. All of these people to love and this job and seeing things as if they were new every day through the eyes of my kids. I am incredibly blessed. A lot of people spend time feeling bad for what I go through with my health, but I wouldn’t trade any of that for a life without Crohn’s. And Crohn’s has taught me how to appreciate it.