Hello, dear friends....
For those of you who have been wondering how I'm doing health-wise, things are still about the same. I'm still on meds including a daily antibiotic, to try to keep my symptoms from being horrible, but most days the truth is I don't feel great. I had one really great day a couple weeks ago, and I'm always SUPER grateful when a day like that happens, since they're pretty few and far between right now. At least the antibiotics are keeping the symptoms from being as awful as they were before I went to Mayo, so I'm grateful for any improvement at this point!
In the meantime, we decided to go ahead with the 12-week trial of IV immunoglobine treatments which are basically like blood transfusions, that Mayo Clinic has recommended. Mayo determined that there's a problem with my immune system, which is causing my other issues. They think that if they treat the immune system with these IVig treatments, it could IN THEORY, help eliminate these stomach issues, etc. that I'm having. Granted, they feel like it will be "somewhat experimental" for me, because my case is so unusual, however they have a few other patients with similar symptoms who've had these treatments and are now feeling great. SO, after much prayer, we decided to move forward with the treatments only to have the insurance company deny them. They're astronomically expensive, so paying out of pocket isn't an option and honestly, I wouldn't want to pay out of pocket for something that is "somewhat experimental" anyway. Know what I mean?
Anyway, the insurance company denied the treatments, so they had to have a "peer to peer" phone call between an insurance company doctor and my Mayo Clinic doctor. That call resulted in no change, so Mayo filed a formal appeal, which was also denied a couple days ago. (They're denying the treatments because you normally use these to treat people with specific things like autoimmune diseases and such....and I don't have that.)
I haven't talked about it much here, because honestly it's all been so frustrating and it's dragged on and on for what feels like ages now. We had hoped that the antibiotics would take care of the issues for me, but when those didn't work, we started trying to move forward with these treatments more than a month ago. Every step of the process takes another day or week or three. It's honestly kind of a drag and I know how "over it" I'm feeling, so I try to spare you from having to hear about it too often when you come to visit me. ;)
At this point, we are allowed one more appeal directly from me as the patient, and I am beyond grateful for a husband willing to take this bull by the horns for me. I can honestly say I don't think I'd hassle with it, if it were just up to me. But Bart is working on this last appeal, gathering paperwork and all that jazz, so we'll see what happens. Perhaps God is closing the door on these treatments for some reason. We're praying that He'd make our path clear, one way or another.
After this, if we're still denied these treatments, we're nearly out of options for things to try. They mentioned a drug I could take that *could* make my face start twitching and might continue to twitch for the rest of my life. Um, that didn't seem like a viable option.....but maybe that's just me! Haha. And another drug that we'd have to get from Canada, because it isn't available in the US yet. So....blurg.
I read something in the Jesus Calling book this week, that said that God never promised us a life free of troubles, but He's promised to walk through those times with us. It also talked about how easy it is for us to put our hope in whatever seems like it'll be the resolution to our problems, rather than to put our hope in Him. I know that's been easy for me to do lately. I was so hoping that we'd get approved in the first place, and then I was so hoping that the peer to peer call would work and then I was so hoping that the appeal would work and to find out, yet again, that it was denied was kind of heart-breaking. The thought of continuing to feel cruddy every day -- indefinitely -- was super disheartening. I had myself a little cry on my sweet hubby's shoulder and then he prayed for me and for this situation. I spent some time in the studio and eventually moved past the pity party portion of my afternoon -- *wink* -- and started to feel a little better about things. The next morning, a friend reminded me of the verse in Lamentations 3:23 that says that His mercies are new every morning. Great is His faithfulness! I am so grateful for His mercy and to know that even though that day was super hard, we get to start each new day "fresh, with no mistakes in it" (as they say in Anne of Green Gables) and that there are new mercies from God for each new day.
I know that in the whole big scheme of things, I might be sick, but I am not dying. There are a LOT of people struggling with way tougher stuff than this. Ultimately, I don't have any answers. Ultimately, I don't know what's going to happen or how much longer this may drag on. But I DO know that my God is good and my God is faithful and He is walking through this trial with us. And I know that He will do the same for you, if you ask Him to. I also firmly believe that it IS possible to enjoy life in the midst of our struggles. I'm living proof of that! :) We've been blessed with so much! Such wonderful family and friends, so many littles to love and enjoy in the form of nieces and nephews, beauty all around us in the sky and gorgeous flowers and even in the snow and ice! We have food on the table (and thankfully, no more food restrictions!!!) and a warm house to come home to (or rarely leave, as the case may be -- haha! -- I love staying home!). We have MUCH to be thankful for! To God be the glory!
Friends, thank you so much for checking on me and for praying for us and for sharing in this journey with us. I appreciate you more than you know. I'm sorry this post isn't super chirpy and happy, but this post is about real life and sometimes, life is hard. I know you know.....I'm sure you've all been through hard times at one point or another. You might be going through a really hard time right now. Please know that I'm praying for each one of you who is reading this, praying that you would be encouraged today and that you would come away from this post feeling blessed. And mostly, I'm praying that God would be glorified.
much love,
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