I love to write. It is something I am compelled to do. However, with the persistent headaches, I have found it challenging; so instead, as I rest in the dark, I have ample time to pray and, also, as I lie quietly, I have time to think of what I'd like to write should I get the chance.
Getting the chance now, I say: thank you. Thank you for your encouragement, support, understanding and prayers. Thank you for your kind birthday wishes and thoughtfulness. Your kindnesses have brought tears to my eyes a thousand times over. Thank you for your responses to this blog; they have given me the motivation to continue on writing in moments like this. Please know that I'd love to write each of you - or better yet sit down and catch up after giving you a huge hug - and I long for the day when that will be feasible. Thank you for loving me no matter what state I am in. I am reminded time and time again of my blessings from your kind words and gestures. Thank you.
***
Although my birthday was a marvellous celebration, it was unlike any other I have ever had. I will hopefully have the time someday to explain that further, but for now, the update of my journey is the following (and I'll start with the 'unfortunately' before the 'fortunately'):
The new medication isn't working.
Well, perhaps it is working in the way it is supposed to be: preventing new clots. But there's no tangible way to tell. The tangibles in my life have accumulated to a whole "side effect profile" where the outcomes from the drug make it challenging to function.
You see for the last week or so, I've been struggling with some pretty hefty side effects. I had called the clotting clinic (yes, as unusual as the name sounds, there is such a thing in Edmonton), and had received mixed messages (from their reaction of: "eek, that's not good!!! We must get you off of this!" to their callback much later of: "well, the hematologist says that you have a hypersensitivity to the medication"). I acknowledged said assessment and then asked about when I should be concerned (as I had already had a growing inclination that these were not good impacts from the drug); I was told that should it become "life threatening", I'd need to seek medical attention. I then asked for more information about the drug as it is so new that my information from the doctor & pharmacist had been, well, minimal; I was told to "Google" it. Oh.
There are times when I get emotional. [I'm writing this with a sort of "brouh ha ha!" laughter echoing in my head; for those of me who know my emotional nature, this is an understatement to say the least]. Nevertheless, last night felt like the impact of this condition was getting to be in the overwhelming box... the wide range of emotions flooded over me in a tidal wave. I felt like having a tantrum. I felt that "enough was enough!". I needed answers. I needed a solution. I needed to park myself outside of this hematologist's office and be seen!
Then I took a deep breath, started to pray, and began my research.
The research was not encouraging though I will spare you all the details. The end result was a disheartening reality: I found out more about PEs. I discovered more to rule out the possibilities that I had considered in the back of my mind about the source of my PEs (indeed, all of the scholarly research confirmed that none of the following applied to me: the birth of the twins, Mirena or DVT would have fit my circumstances for the source - incidentally, there's a whole site dedicated to thrombophilia - called, aptly, "stop the clot"). I also learned more about the problematic angles of anticoagulants - those serious possible side effects that make you question if anyone should be taking the drug.
Anyhow, to summarize: the realities all came into focus: of the serious nature of my condition of venous thromboembolism, of the unknown source (which occurs in 20% of cases), and of the serious impacts of the medicines I will be taking for my lifetime. I was overwhelmed by the cascade of information, that if written from a different angle, would've made for a great nightmare plot.
And then, I stopped myself - again. I know that there is nothing that I will face that is insurmountable. I recognize how I am in a place of strength even when I am feeling overwhelmed by the circumstances. My faith is foundational and my readings of Hebrews has made hope accessible in precisely these moments. I am learning the working definition of perseverance.
Ah, how there have been so many steps out in faith in this process. The short of the long of it is that I am going back to Coumadin. Otherwise known as Warfarin, it's the anticoagulant that fluctuates in INR numbers and that requires monitoring via blood testing. As much as that is challenging to choose this path, I am eager to get back to a place where the healing is focused on the original condition, without the additional barriers of the side effects. After all, I am aware now, more than ever before, how much my health impacts the lives of these amazing little boys I am called to care for.
It was interesting to me, that in the midst of all the research last night, I opened my inbox to find this little treasure; I hope you get a chance to read it - I felt it was such a beautiful summary of such a piece of wisdom. It's amazing how God gathers everything together in every way possible at exactly the precise moment.
And about that feeling of "enough was enough!"? I've been thinking about it. Admittedly, it's hard to sit peacefully back as the pain - a combination of residual pain and pain from the new medication - intrudes with a vengeance. However, in order to heal, it has been essential for me to work through my emotions in order to be able to say: No matter what [here's the link to the lyrics]. But that's what it comes down to for me: the lyrics of this song ring so true to my core.
There's so much else I'd love to share but, unfortunately, I'm starting to lose my energy. Nevertheless, I want to leave this entry on one last note: as these infuriatingly small, unseen entities of my lungs are under attack by my white blood cells, I am confident that healing is happening. I may not see it and, in my fragility, with what I do feel, it would be logical to fall into a place of hopelessness and fear given that the only evidence I have is the result of pain and the only information I have found is the medically based reports of statistics and symptoms. But instead, on this journey and more than ever, the verse from Hebrews 11:1 rings true for me:
Now faith is being sure of what we hope for and certain of what we do not see.
No comments:
Post a Comment