Things I’ve Learned.

18 03 2012

There are a few things I’ve figured out recently.

1. I need a lot of sleep. I’ve been telling people that for years, but I think deep down I always wished I could be one of those people that sleep for two hours and wake up ready to go. I’m not. Turns out, when I get eight or more hours a night, I’m a much happier person.

2. People don’t understand that as a 24 year old I go to sleep earlier than my second graders. But that’s ok.

3. Sometimes it feels just as good to say no and step back from commitments as it does to get involved. Taking that extra hour a week to do something for me, like walk the dogs or read a book over lunch or bake cookies makes me feel much more centered and whole.

4. Sometimes my mother is right. Scratch that, she’s right most of the time. The entirety of this post up to this point consists of things she’s told me for years. Right now I’m sure she’s somewhere shaking her head and rubbing in the fact that she is wise and she told me so.

5. Tysabri has got to start working soon, right? In that vein, I’ve taken down my Prednisone a notch. I’m hoping that’ll make me more mellow and easier to be around. It’s sort of a Dr Jekyll/Mr. Hyde scenario.

6. I am reminded again and again that the experiences I have had can be used to help people around me and advocate for others. Today at church a girl told me a family member of hers is going through a similar surgery to mine tomorrow and her family is having a hard time processing it. She didn’t even know that I had that experience, and I was able to just sing the praises of an ostomy and how it has changed my life. The funny thing is, before my surgery, I didn’t hear people having these conversations anywhere. Now I feel like God puts those people in my life so I can offer a little bit of light. Not all challenges are bad. Not all scary experiences need to feel torturous. There is nearly always a light at the end of the tunnel and all of these obstacles make us who we are. They build character and add layers and nuances to you as a person. They make you more interesting and more empathetic and more beautiful and I am thankful every day for the ability to appreciate that.

What’s up with this weather guys? March and 82 degrees? Not ok! I miss cool, rainy days. Sweatshirt weather. But I’m doing everything I can to embrace the sun and count the joyful moments in my life.





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?





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.

 





Epic Baking Day

22 11 2011

Yesterday I was good and started off with a workout. But then I had severe belly pains for a few hours and ended up in the ER for tests, which all came out fine. The pains stopped on their own and they sent me home, after blood work and X-rays and mangling a couple of veins trying to give me an IV.

But today. Today is going to be good. I went grocery shopping first thing and have already made Bailey’s marshmallows to go with homemade hot chocolate tonight. I’m currently working on a majestic and moist honey cake and later friends are coming over to finish up the night with cupcakes (number 24)  and honey cranberry cornmeal quick bread.

Today is a day of good smells and good company and good food. We’ll laugh and dance around the kitchen a little and play music too loud and eat too much. And today I am thankful for that.





Mission Accomplished!

18 11 2011

We had pretty good news today!

My scope went really well and everything looked good. While that doesn’t show what’s going on with the whole middle part of my intestines, it bodes pretty well. The steroids are working. While they aren’t supposed to be a long term drug, at this point they are recommending that I stick with them for a while.

I still need a CT scan but I’ll get that at home. Hopefully I’ll get it before my appointment with my new doctor, Dr. Rubin, at University of Chicago. Mayo was pretty excited that I was going to be seeing him which makes me happy. He specializes in hard to treat cases, which I am.

At this point, unless I go off the steroids and cause a flare, I don’t really qualify for a lot of things. You need to prove a flare before you are allowed to take Tysabri or be a part of clinical trials. The steroids always work well for me so my inflammation is down. As long as the CT scan looks good, I’ll be ok for a while.

The prednisone is killing me though, so they are letting me taper my dose. I’ll go down five mgs a week until I get to twenty, which is far better than forty. The thought is that if I get a maintenance dose working for me the Cimzia might stretch out for a while longer, which would be fantastic.

Overall, this was a pretty good appointment. It sucks to have to be on steroids, but the side effects of those are far less than that of Tysabri or some other scary meds. This will buy us some time until new drugs can be approved and put on the market.

Before my appointment today I tried to walk around and take pictures of Mayo to give you guys some idea of the scope of this place. It’s incredible. It’s huge and there is art and everything is shiny and new and the people are just so nice.

Walking up to one of the hospital buildings

It was super windy and we literally almost blew through these doors.

Chihuly glass hanging from the ceilings

Andy Warhol has quite a bit of art hanging around here...

Anyway, I know I’m blasting you with pictures but this place is hard to comprehend. That’s just a little taste. Now we’re relaxing before our drive home tomorrow morning. I’m looking forward to being home, seeing the dogs, and taking less steroids tonight. Success.

 





First doctor appointment accomplished

17 11 2011

and not much else.

They want to do a special CT scan and an endoscopy and ileoscopy. They couldn’t get the CT scheduled until next week so we’ll just do that at home. I have the scopes tomorrow afternoon and then our final doctor meeting at 4.30.

So far everything is as expected. The only big negative so far is that with an ostomy I don’t qualify for any of the clinical trials that they have at Mayo, or likely Chicago. That puts my choices at this point with Tysabri or potentially medication that they prescribe to organ recipients to prevent them from rejecting the donor organ. They don’t want to talk until the tests are done because if the disease is active only in a small portion then surgery is also a potential option.

So right now everything is just up in the air. Mayo is incredible and intimidating as always, but at least I was allowed to eat after a while today. I’ll enjoy my dinner and tomorrow pretty much clear liquids.

What’s weird is that the partial sedation scopes were all booked so I have to go through an anesthesiologist which means I’ll be fully sedated and druggy when I’m finally out. Good thing my dad is here- no promises that I’ll be able to comprehend that last doctor’s appointment at all.

But this should put us on track to come home Saturday morning. So yay! More updates tomorrow I hope, unless I’m too out of it.





Emotions.

14 11 2011

Today was the first day that I got really emotional about this whole experience.

This will come and go. Most of the time I just take it and roll with the punches, but out of nowhere it will hit me and I get really down.

I felt off at school today and didn’t think I was at my best. So I was surprised as I was leaving when a bunch of kids rushed to make me stay a few more minutes so they could give me this note that they wrote together and signed.

It almost made me cry. The way kids love with their whole hearts is awe inspiring.

At lunch today one girl looked at another and said, “What do you do when you get cranky? I like to eat.”

Not only is that pretty introspective for a seven-year-old, but that’s exactly what I like to do.

So when I got home I looked up some recipes and my mom and I went to the grocery store and I’m updating as I’m waiting for things to cook. I’m making a salad with arugula and roasted sweet potatoes and butternut squash and apples and pomegranate seeds and turkey burgers and homemade brownies for dessert.

My family is so understanding. My mom let me cry for a while in the car and then we just moved on. Cooking and turning the music loud always makes me feel better and now I have these delicious smells wafting through the house. Tasty. I’m excited.

Thank you all for continuing to read updates. I love each of you. Thank you Kelsey, for a card that made me cry and miss you even more today than usual. Thank you family for getting me chocolate and hugs. Thank you students for writing me notes.