Monday, April 3, 2017

Big Appointment This Week

I've been home from VA a full week, and I think it has rained every day...at least that's a decent representation of how my body's been feeling, too...

Other than my Xolair last Monday, I have not left the house. It's been a rough week... I knew it would be. I pushed myself to be able to do things with family and friends when I was in VA. Sometimes I'll make a decision to do that extra activity or eat some food knowing I'll pay for it later. I made a few more of those choices that week than maybe I "should" have... I'm not sorry I made any of those decisions, but that doesn't make the symptoms I have been dealing with now any less severe...

Leni working hard at a Trippin' with Jamie conference in VA
Anyway, for the past few months (pretty much all 2017), we've been waiting for an appointment that is now this week! Since this recent flare started, I've been having major issues with absorption. Meaning my medications are not being absorbed, any food I do eat is coming out undigested, and my tube feeds have been running through me. That is the main reason I now have IV meds to use when my intestines are just not playing nice. At least those IV meds have gotten the constant anaphylaxis under control, but it hasn't solved the problem, just slapped on a temporary band-aid.

And that's what we are hoping and praying this appointment will be able to help with. I'm seeing a pancreas specialist in the GI department at the Cleveland Clinic on Tuesday. I currently have a GI and GI surgeon at the Clinic and both have referred me to this new GI to hopefully get some insight on all these absorption issues. My allergist and neurologist are also both waiting to hear what this doctor has to say too, because we can't try any new medications until we get my absorption sorted out.

Lazy day snuggles on my parent's couch
So you could say there's a lot riding on this appointment...I hope this doctor is ready! But seriously, there is A LOT riding on this appointment...and I'm nervous. I've had more than my share of doctors who can't or won't do anything to help. And I don't know what we'll do if that happens with this one, too... All my current doctors have deferred to this appointment. We can't try any new oral meds until we get the absorption figured out, so we've been waiting months for this appointment to get here. When I saw my allergist and neurologist earlier this year, they both were just asking what I needed from them to GET to this appointment because there's nothing more for us to do until we get some answers about my pancreas.

It's great to have doctors so willing to help, but also frustrating (and the unfortunate reality of rare disease patients) when there's nothing they can do. As my allergist said, until we can get my body absorbing my meds, we can't even try any new meds for my mast cell disease because we won't know if they just don't work for me or if they're not working because I'm not absorbing them. Even though I do have IV access, we really don't want me getting dependent on IV meds long term. If we were to start any IV treatments, then I'd be stuck relying on those, so we're holding off on that unless absolutely necessary and we have no other options. So that means these past few weeks/months have been a matter of just getting through the days as best as possible and keeping me as stable as possible so I can get to this appointment...

And now that the appointment is here, we have to pray and hope that he's willing to listen and can do something to at least get us moving in the right direction...NO PRESSURE, right??

Let's do this!
So that's what's up this week! Big appointment that will either give us a new direction to go in and potentially new angle for treatment options OR will be a complete waste of time and I'll leave wondering "now what?"...Please be praying that second possibility is NOT the case.

In other news, I am now 26 WHOLE DAYS EPI FREE!!!! That, my friends, is big news on it's own! Since October, I've been going into anaphylaxis every 4-5 days and needing at least one (often more) dose of epi multiple times a week. When we finally got the IV medication situation sorted out, I made it 15 days before the unfortunate run-in with the essential oils fair. After we reset the counter yet again, I am now SO CLOSE to a full month without epi!! That's a reason to celebrate! Although we'll be keeping it super low-key because we know strong emotions can be a mast cell trigger and we don't want to rock the boat when I'm so close to A MONTH!!!

I know my posts have been less frequent lately, and that's mostly because there hasn't been a lot going on (at least that is worth sharing online =P). Like I mentioned above, the past few months have been a holding period waiting for this appointment this week. Now that it's here, hopefully (prayerfully) we will be able to start moving in the right direction to get things under better control and get me back to where I was last summer.

As always, THANK YOU for your prayers. In my absence from this blog, please know that I am very much aware of many of you who have been faithfully lifting up me and my family in your prayers. We are so very grateful and thankful for that! Please be praying that this appointment with the pancreas specialist is productive and that he will have the insight that we need to move in a good direction. Please be praying for strength and encouragement for me as I am struggling with some increasing symptoms and feeling more isolated and unable to manage simple daily tasks some days. Please pray for strength and joy for Nick as he is working full-time, serving me so selflessly, and acting as the main point person for our house hunt. Please pray that even in the midst of this season of life, our lives would be a light to the doctors and others that we meet and that our struggle is being used in a way to bring encouragement and Christ to others who are also hurting.

No comments:

Post a Comment