Monday, December 10, 2012

The New Normal

I have struggled with what to write on here since getting diagnosed with ulcerative colitis. It's not that I don't have anything to say, but more that I don't know how to focus my thoughts. I'm a bit all over the place these days, so the blog may a bit all over the place as well. I haven't been sure of how much I should share about my condition, but let's be real, I've never been one to hold much back on the blog, so I'll probably be chronicling a lot of this new normal that I am still adjusting to.

The good news is, I am feeling much better. Though all of my symptoms have not resolved (and by symptoms I basically mean diarrhea), I have a healthy appetite, and I have more energy. I also have been sleeping a lot better (except for last night) thanks to a new sleeping pill, which is a blessing (the steroid I am taking comes with some delightful side effects, one of which seems to be insomnia). I still feel physically weak and have occasional bouts of dizziness, but I have come a long way from the days where I felt as though I couldn't even get out of the bed. I am hoping to start getting in some light forms of exercise soon, maybe this week if I can find the time. I certainly don't think I'll be running any races any time soon, but I am longing to get back to running. I miss it so much.

Speaking of running, my GI doctor told me at my last appointment that he would advise against me running any more half marathons because it could aggravate my condition. I was very disappointed when he told me this because I had planned to try and run two half marathons, but I can still try and run shorter distances, so that is what I will do. After all, I still have to chase after my goal of getting a sub-30:00 5k time!

Thursday of this week is a big day for me. Since I have a fairly severe case of ulcerative colitis and have not responded to the steroids as well as the doctor would have liked (I should have been off them by now), I am going to be on some medication for the long term. There are two main drugs that my doctor recommended--Remicade and Humira. Remicade is administered through an IV once every 8 weeks, and Humira is a shot that I would give myself every 2 weeks. After researching and praying and talking with the doctor, I've decided to go with Humira. I don't love the idea of giving myself shots, but I do like that I can do it at home and not have to go anywhere. The side effects and risks of both drugs are very similar, and if I do not respond well to the Humira, I imagine the doctor will put me on Remicade next. On Thursday I will go to the doctor and be trained on how to give the injections. The first round is 4 shots, so I am glad that the nurse will be helping me with those because it's kind of daunting to think of doing so many at one time. After 15 days, I will give myself 2 injections, and then every 15 days after that I will only give myself 1 injection. After about a month of this, I should be a pro, right?! The goal of the medication is to put me in remission, and I pray that it happens sooner rather than later, but at this point I don't really know what to expect.


At times I have been overwhelmed when I think about the fact that I will have this condition for the rest of my life, but I have had to stop myself from thinking that way. The truth is, all I am given is today, and that is a gift. I don't have to worry about tomorrow or the next day, or the day after that. God has my life in His ever capable, trustworthy hands, and none of this has come as a surprise to Him. He is using this whole experience to draw me closer to Him, and I can honestly say that the past several weeks have left me feeling more in love with Jesus than ever before. I am so, so grateful for my life.

6 comments:

  1. I'm so glad you're feeling better, Erin - praying for continued healing! As to the shots, I can speak from experience that it gets easier. When I was diagnosed with diabetes at 17 I was SUCH a needle-phobe (I was that embarrassing child who takes 20 minutes to get a booster shot and sits there crying and trembling and cowering away from the needle...) I actually prefer to give myself shots rather than have someone else do it because I have so much more control over it! And it only took a couple days for it to become second nature. I hope it's as easy for you :)

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  2. Beautiful post. I can't imagine how bittersweet this season is - bitter because of the pain and hardship of being diagnosed with a chronic illness, but sweet due to the dependence you've so amazingly and faithfully put on Jesus. I have so much respect for how you've handled this journey. A lot of people crumble under hardship, but you are a testament to Christ - who praised God in the face of diversity - and you have already brought so much glory to His name through all of this!

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  3. I am so glad to know you are feeling better, Erin! It is encouraging to see the Lord equipping you to walk through this difficult situation and to see you praising Him in the midst of it.

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  4. You never cease to amaze me with the amount of strength, courage , and faith you show in the face of adversity. I truly am proud and honored to be your brother and hope that one day soon you will be cured and healthy. C-ya soon

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  5. You have remained so positive throughout this whole ordeal. It's amazing and encouraging! I'm so glad that you got answers about your illness and are feeling better. A positive attitude, especially in the face of adversity, will get you far.

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  6. It's got to be overwhelming, and you sound like you're handling it beautifully. Hoping you can find something else that you enjoy just as much as running while you're figuring all of this out. I'm encouraged to see your faith and perseverance.

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