Monday, April 11, 2016

Seasonal Identity Crisis

The weather in Ohio right now is acting a lot like a rare disease...or chronic illness in general. Sunny and 70 degrees on Easter, two weeks later and we're get 6 inches of snow...sounds a lot like my life right now...

After the first Xolair injections, I felt better than I had in a long time. I was able to start eating again, Nick and I went hiking, I had more energy and started being more active. It was great! Second round of Xolair hasn't been quite as good...3 ER trips in less than 2 weeks, probably should have had 2 more but I was just OVER date nights...feeling pretty worn out and sick...just not what we hoped would be after getting the next round of Xolair.

Was it just a fluke that Xolair had such an incredible effect the first time? Maybe this month is a fluke? Did we have a "honeymoon" period after the first injections so we had higher expectations this time? WHO KNOWS? Life with mast cell disease is about as predictable as the weather in Ohio...

As I'm writing this, it is just starting to snow for the predicted 4-7 inches tonight into tomorrow morning. It's April so you'd think it's starting to warm up, but apparently Ohio missing the memo that it's now spring...just like my body missed the memo that Xolair is supposed to be making me feel better...

BUT, just like I know that despite how long it may take for spring to come to Ohio, I know it is coming, I have to believe that feeling better is right around the corner, too.

In the meantime, life goes on! I had a great GI appointment last week and have scheduled an endoscopy and tube change (good-bye Herman 2, welcome Herman 3!) in about 2 weeks. We are also in the process of scheduling some motility testing to see how my GI tract is actually functioning. I did much of this testing about 6 years ago, so being able to compare will be good to see if things are progressing and if we need to approach treatments from a different angle. (Plus half our appointment was spent talking about poodles since he has 2 and he just had to show me photos of his dogs and ask all about Leni =P)

I've started a new medication that should help my body regulate my blood sugars a bit better so I'm not dropping super low as often. It hasn't really don't much yet, but can take up to a month to actually work, so we're still waiting. I have officially been cleared by my cardiologist (PRAISE GOD!) after my 2 week heart monitor came back normal, so I can cross one specialist off my list for now. I'm seeing my allergist again this week just for a quick check-in and recap of what other appointments have been going on since he is kind of my primary doctor in this area. Always lots going on...professional patient status = achieved...

In non-doctor news, I'm heading to VA later this week to help my mom out with a conference with her travel business (check her out! Trippin' with Jamie) and spend time visiting with my family! Maybe VA remembers what spring is supposed to look like...Nick and his parents will come later to spend the weekend to celebrate Passover (a month late, yes, we know) with our family and friends. This is one of our favorite times of the year so we are all super excited! My brother is even flying back from CA to join us!

As always, thank you for your prayers and encouragement. Recently I have been feeling very encouraged in Christ and at peace despite all the craziness going on, but that doesn't mean that I don't have times when the doubts creep in and start to permeate through everything. During those times, sometimes all I can hold onto is the truth of who God is and what He has promised. I truly believe that all your prayers are what is carrying Nick and me during this season of life. As we are beginning to see the sun on the horizon, we hope and pray that soon we will be sharing more and more the victory that God is bringing about in our life.

So thank you, and I mean that. Sometimes I wish there were better words to express the gratitude I have for everyone reading this blog, praying for us, just coming alongside us, whatever your role may be, know that it is being used to encourage us. If any of you reading this blog in VA want to meet up sometime while I'm in town, send me a facebook message or email or text! I'd love to catch up and thank you in person for all your prayers.

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