Wednesday, January 18, 2017

Keep On Keeping On

January is not slowing down one bit. I clearly was mistaken when I thought that whirlwind of a week in December was going to be an isolated week of craziness and that things would slow down once it was over. You'd think by now I'd know better...

I've been out of the hospital a week now and only wished I was back in 2 or 3 times. Yeah, you read that right. My dislike for being in the hospital is often only outranked by my hatred for my mast cells...and while I did have fantastic nurses and good doctors this go round, the fact that I actually wished I was back in gives you a glimpse of how rough things have been.

To put things a bit more in context, let me explain a bit.

As I'm sure you've picked up on over the past few weeks/months as things have been falling apart again, my GI tract is one of the biggest offenders at the moment. This takes many different angles, but the important one here is my lack of absorption. When my GI tract gets as inflamed and irritated as it is right now, my oral meds come out undigested, my liquid meds likely run straight through me, and my tube feeds are barely able to get me any nutrition as they rush out faster than they went in. This means that not only am I dealing with GI pain, nausea, vomiting, and the like, but I'm also dealing with the fall out of not absorbing any of my mast cell medications. Not a good combination...

That is part of the reason I ended up in the hospital last week. (The other part being severely low potassium and severe dehydration.) While I was admitted, I got IV medications around the clock to keep my mast cells under control with other IV meds available as needed for breakthrough symptoms (nausea, pain, etc.). The second night I was home, I was having some of the worst GI pain I've had in a long time. I was curled up on the floor outside the bathroom asking Nick through tears if it was "bad that I wish I was still in the hospital?"

And unfortunately, that's still where we're sitting. We did end up having to go back in to the ER once since I've been discharged (for GI issues), so that can give you an indication of how much better things are right now. (Please note the sarcasm that sentence should have been read with.) The next 2 weeks I have a few appointments coming up that we are praying will give us some answers. I see my allergist and get my first official Xolair of 2017 this week. I have some big follow-up questions to discuss with him at that appointment, so please be praying that he will listen and be willing to consider options that are not what he may be familiar with.

Because of how rare mast cell diseases are and the fact that I have gotten significantly worse in a very short amount of time, we are in a bit of uncharted territory for both me and my doctors. My allergist is typically very willing to listen and recommend different options, but like most doctors, prefers to stay in his comfort zone. I am already out of his comfort zone. Now some of the treatment options that I very desperately need are also outside that comfort zone of what he is used to and familiar with prescribing. Please pray that he will be receptive to my needs and consider the recommendations of both Dr. Afrin and the doctors from when I was in the hospital last week.

Tomorrow I have an emergency consult with one of the GI surgeons at the Cleveland Clinic to resolve the Herman issue. The appointment was scheduled such that we will either leave with Herman fixed and working or I will leave with Herman V. I am very nervous. As I have said many times on here, anesthesia and I do NOT get along. I am mentally preparing myself for the possibility that I will have to be put under on Thursday, but the not knowing is difficult. Please be praying for wisdom for us as we will have to make some big decisions very quickly. Pray that the doctor will be confident in what we need to do and willing to listen to the issues I have been having. Pray for safety during any procedures that may need to be done.

Next week I will be seeing my functional medicine doctor and neurologist, and a few weeks after that, I am scheduled to see another GI doctor at main campus. I am hopeful that with all these appointments, some progress will be made toward getting me back to my baseline. At the same time, I often feel like I am just shuffled between doctors because no one seems to know what to do and we get even fewer answers despite having more specialists. I feel like I'm starting a collection...I used to collect key chains, now I collect doctors! Haha, so fun...

But what can you do, right? We keep on keeping on. ALL of us. We all have stuff going on in our lives. I'm not the only person struggling right now. Your struggle may not be with your mast cells, but that doesn't make it any less difficult or exhausting. I think we get caught up in the trap of our culture where if our perceived challenges aren't as great as someone else's appear to be then ours are invalid...so not true. Even an 8 oz. glass of water will eventually be too heavy for the strongest man in the world if he holds it out long enough. We are all subject to the brokenness of this world and our lives here on earth will forever be a mess because of that.

If right now, you're going through a tough time, too, then take a moment and smile. Because I'm cheering for you. God is cheering for you. He wants to walk with you through whatever it is you're going through. He knows. He gets it. He stepped out of heaven and came here just so when He whispers, "I know. I understand." He could mean it. Smile because your hope is not in this world. It's in the hope of heaven that we have because of Jesus. Maybe you're smiling through tears...I know I have plenty of times, especially in these past few weeks...but there is beauty in trials, because we know that ultimately, we're going to make it out okay.

Life is tough right now. But I'm doing all I can do...and that's hold onto God and keep on keeping on.


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