Friday, November 20, 2015

Three Down, One to Go!

So, three appointments down for November! And I am very happy and relieved to share that all three have been really good.

My first appointment was with a geneticist at Akron Children's. It was good. We spoke to a genetic counselor first, then the doctor came in. We were able to rule out a few conditions that have been mentioned on and off as my symptoms have continued progressing, so that was good. We also decided on a "plan of action" for some potential genetic testing to have done before the end of the year so we can take advantage of my current insurance. The doctor we saw was also going to speak to the head of the department who I was told is no longer accepting patients. He is their specialist in the conditions we are now investigating, so getting his input will be fantastic!

The next appointment was a follow-up appointment with my neurologist. All of the initial blood work had come back normal, so she had asked me to schedule another appointment to re-do some testing and discuss what we need to do next. This was a great appointment, too. I have actually seen some improvement in my walking and balance since my initial appointment with her. She was pleasantly surprised to see the improvement, however, we both agreed that I am not back to baseline. In the time since my initial appointment and this follow-up, we had discovered that I've been having consistently low blood sugars (hence the reason for the endocrinology appointment at the end of the month). She felt that the sugars may be a large component of the neurological symptoms I've been having, so we decided to hold off on any invasive testing for the time being. After my endocrinology appointment we will touch base again and figure out what makes the most sense to schedule next.

In the mean time, I'm going to be starting physical therapy (perks of working in a PT clinic right now!) to address the muscle weakness I've developed and keep that from progressing. We are hoping that may be due to my decreased walking as a result of my balance issues and unsteadiness, so working on strengthening those muscles will alleviate that as well as hopefully help reduce my muscle pain.

The last appointment I've been to in these past couple weeks was to a new allergist. I was very hopeful for this appointment since this doctor was recommended by a friend who also has mast cell disease. While it definitely started off a bit rough (I was given the wrong address for the office...TWICE...ended up 30 minutes late), it ended up being good. He is familiar with mast cell diseases and also had some new insight into some of my symptoms that we had not considered before. We're doing some more testing, and I have a follow-up in 3 weeks to discuss the results. In the meantime, we are adjusting some of my medications to see if I get any benefit from that. I also got a referral to an endocrinologist that he said is used to seeing unusual cases, so hopefully that will be more beneficial than a generic endocrinologist. Even with me being about 30 minutes late, he still spent almost an hour with me going over my symptoms and history and what I felt like were the most pressing issues.

It's nice to have a run of 3 solid appointment in the midst of continuous symptoms and making little progress. The saying is "two steps forward, one step back" but in practice I'm not so sure that's true. It definitely feels like I'm getting constantly getting pushed backwards and manage to take back an inch every so often. Even as I write this, excited for what these appointments may bring, I'm feeling my last round of meds wearing off and have a trash can nearby "just in case" what happens on an almost daily basis is going to happen again today...but that's life...

It's easy for me to get caught up in a pity party and just feeling like the world is against me...and the reality is that the world is against me since I'm not a citizen of this world, but of heaven. But at the same time, God gives us emotions and feelings and a choice. And we get to choose how we react. Yes, I have my pity parties where I cry and complain that it's not fair and feel discouraged and frustrated. But at the same time, I smile when my dogs snuggle with me when I'm not able to get out of bed. I laugh when we watch ridiculous youtube videos of goats wearing pajamas or penguins falling off diving boards even as I'm curled up in pain. I choose to enjoy the moments I can because I am all too aware of how fleeting those times can be.

Sometimes during the hardest times, the only thing that gets me through is knowing that I am held by God and that even when I don't have the words to say, my needs are still being lifted up. It is humbling to continually be reminded of how many people spread over multiple states (and countries!) are praying for me and my family.

For we know that as you share in our sufferings, you will also share in our comfort...You also help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.
2 Corinthians 1:7, 11

I so look forward to the day when this season of suffering has passed and you can share in our comfort instead of our pain. BUT, even in the midst of this season of suffering, God is using this as a testimony of who He is and what it means to be a follower of Christ. While I would not have chosen this road, I am humbled to know that despite my brokenness, God is working and using what little I have to offer so others can give thanks to Him for the blessings He gives. Thank you for walking through this season of life with us!

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