Tuesday, November 22, 2016

How Quickly Things Can Change

I've started this post probably half a dozen times before just giving up on writing it...It's definitely not for lack of trying that I haven't posted a blog recently. It's more that there are so many thoughts whirling around in my head and I just can't seem to put them onto paper (or screen =P).

I haven't just been struggling to write, I've been struggling to function.

I've started and stopped writing this post so many times. Even as I'm finally getting words down here, I still feel like I can't put into words how things have been going these past few weeks.

This year has been beyond a gift after the way it started. In case you don't remember, I started off 2016 with a week long hospital admission due to a mast cell reaction that we couldn't get under control at home. I had just chosen VICTORY as my OneWord for 2016, but found myself fighting a losing battle to my mast cells not even a full week into the year.

I remember wondering what this year was going to look at when we were faced with uncontrolled mast cells and few answers. I was physically and mentally exhausted and we didn't really have any direction to go. I was desperate to believe that things could improve, but really didn't have much indication that they would. And yet...a month later, we finally got insurance approval for my Xolair injections which have turned out to be one of the most effective treatments we have tried so far for my mast cell disease.

How quickly things can change...

I am so thankful for the blessing this year has been so far! After the rough start, I never expected to see things improve as much as they have this year. I've been able to eat solid food. I've been able to slowly work back to running again. I had my longest run without an EpiPen in almost 2 years. We traveled to Minnesota, Wisconsin, Texas, Florida, and California along with visits to my family in Virginia. And even beyond all the traveling, Nick and I were able to build some semblance of "normal" where our lives were not revolving around ER trips, doctors, and trying to manage uncontrolled symptoms. I was so excited going into this holiday season to be able to to actually EAT Thanksgiving dinner with my family for the first time in 3 years.

And yet we are again reminded how quickly things can change...

This blog post has been a long time in coming because these past few weeks I have been desperately holding on to the "health" that has grown over the course of the past 10 months. Instead of being able to function the way I have been since starting the Xolair, we're seeing symptoms reappear that have been gone for months and are struggling to manage my daily symptoms that used to be easily managed with my emergency medications.

How do I put into words the feeling of losing things I've already lost once, AGAIN?

It was one thing to lose the ability to eat solid food once. But to regain it this year only to lose it again a few months later...somehow it feels so much more difficult...And running...I fought so hard to be able to run again! To put one foot in front of the other without having to think about every individual movement. I worked. so. hard. And now I'm back to being almost unable to stand for any period of time without practically collapsing or passing out. How do I even begin to describe what it feels like as I look at how far I have come this year and to be watching, seemingly in slow motion, all the progress coming crashing down around me??

Don't get me wrong. I am SO THANKFUL for the health I have had this year. It has been an incredible gift that we had no idea was coming at the beginning of this year. And I mean it when I say that if this gift was for these past 10 months and that's it, then we are thankful to have had this time of blessing. But that doesn't mean that I don't sit and cry in pain and fear and exhaustion as I watch what I slowly regained over the course of the year slip away...again...

I just got home from being admitted for 4 days. We tried so hard to manage things at home, but with 4 ER trips in less than 2 weeks, we knew that we were fighting a losing battle. All of a sudden, this year feels like this year is ending almost how it began...Uncontrolled symptoms, few answers, no direction...

Managing mast cell disease is a game of chance when things are good. But when things go wrong, it feels like a ticking time bomb of trying to catch up to snowballing symptoms before things crash hard. The majority of this year was such a stark contrast from last year...I went from losing the ability to walk to running again, I began to tolerate solid food after almost 2 years of soft foods and liquids, I saw improvements in my health that I wasn't sure I could even hope for. Yet this holiday season feels so similar to where I was last year facing progressing symptoms, few answers, and desperate for relief...

I love Thanksgiving. I want to enjoy this holiday season with family and be thankful for the year I have had. But somehow it feels so much tougher when I'm dealing with symptoms that feel like all the progress I've made is crumbling around me. I was so looking forward to being able to actually eat Thanksgiving dinner for the first time in 3 years...Now I feel like I'm facing not only NOT being able to eat anything solid again this year, but also struggling to keep the worry of whether things are getting out of control AGAIN at bay...

This time last year, I was dealing with many of the same feelings of discouragement, frustration, helplessness, exhaustion, and more along with all these familiar physical symptoms...but I didn't have a whole year of "health" to be thankful for. A year ago, I had no idea how good a year was possible...now I do, and I think that is what makes this that much more difficult. I am so so thankful for the gift and blessing this year has been, but at the same time, it makes this recurrence of symptoms so. much. harder.


I've started and stopped this post so many times because every time I try to write, the "what ifs" and questions and fears begin to swirl around in my head again. I don't want to be back where I was a year ago. I still have so so much to be thankful for...I don't want to forget that now. But when the physical symptoms become so relentless I don't get a break, I'm stuck alone with my thoughts (again)...and it can be hard to forget how quickly things can change...

1 comment:

  1. Praying for peace in your thoughts and wisdom and guidance in your doctors. Hugs and love...

    ReplyDelete