It has been a while since my last post. I needed a break from dwelling on my health, or rather my ill-health. As mentioned in two of my previous posts I am trying to find new doctors and that has opened a few cans of worms. In the time that has passed since my last post I’ve seen three doctors but, more on that later. I’ve also had my blood drawn more times than I can count but, more on that later. I’ve been experiencing some disturbing neurological symptoms and so they scheduled an MRI, but again, more on that later. The Humira isn’t working so they’ve stopped that drug and have decided on a drug that requires I go into the office for in-patient therapy twice a month however, more on that later. They are trying to taper me off of the prednisone again; it isn’t pretty, more on that later. They have added a new diagnosis (*sigh*), more on that later. They want to increase the dose on my pain killers, not my favorite idea but, more on that later. One of my sons has been given a diagnosis that I wasn’t really surprised at nevertheless it certainly adds to my stress but alas, more on that later. Finally, the coup de gras… I swallowed a camera. More on that later…
As you can see I am still not in the mood to really delve into what is currently happening. I have avoided processing it mostly because it is, quite frankly, too much to process. I will now owe everyone a myriad of blog posts and updates but not right now. Sometimes it feels good to put ME on the back burner and ignore everything that I’m going through. I hate that whenever I see someone I know and they ask how I’m doing it feels like it is me, me, me… I’ve even been given several blogging awards which I will write about later. I apologize to my wonderful blogging friends who’ve presented me with these honors, I know I should be responding right away but I just don’t have it in me at the moment. I really do want to hear about you, your life, and, most especially, what may be troubling you and how I might help if I can! Don’t get me wrong I really appreciate the opportunity to share any updates I have if you’re willing to listen but then let’s move on. I need a break from me. I’m still sick. I’m still tired. I still hurt all over all of the time but it is time for me to shift my focus. This is what happens to me during the summer when I take a break from schooling. I feel like my brain goes to mush and all I do is dwell on the fact that I’m sick and I’m not getting better, nor will I be in this lifetime. School, while very difficult with chronic illness, provides the much-needed opportunity to focus on something else.
Originally I was going to attempt to provide some quick updates tonight; however, this post is called the “More on that Later” post for a reason. Greg and I have been saving up for a vacation to the Pacific Northwest where we were living when we first met. While working over the budget for this trip I was dreaming of how much fun we all had in Disneyland last fall. I couldn’t get it off my mind. In an attempt to show myself just how impossible it would be to get there again so soon I started pricing out a trip to Southern California. Much to my surprise a trip to Disney would only cost us a few hundred more than our original destination. So… We are going to Disneyland again, this Friday!
It seems so extravagant and yet we had such a good experience as a family it almost felt therapeutic. While there I was so very sick, I had one of the worst Crohn’s flare ups I’ve ever experienced, I ended up spending about 80% of the time in a wheelchair, and both of our kids caught the stomach flu. Despite all of that I decided that it was much more fun to be sick at Disney than at home and I can still see the magical twinkle lingering in the eyes of my children. To be quite honest we do not how much longer I will have the mobility that I have due to the types of arthritis I’m battling. My health continues to suffer no matter how much I attempt to fix it. And so we decided that, extravagant or not, we would go. We sat our boys down and talked with them about how special this trip was, how most families never make it there more than once or twice let alone twice in such a short time. We talked of how we would all need to work together to save money and prepare and that this might not happen again for quite some time. They have been so great. Our family mantra has become, “Well… do you want to spend money on this or would you rather go to Disneyland?” The answer is Disney every time, of course!
Here is a great opportunity for me to let go of the “woe is me’s” for a while. I have been focused on keeping my stress levels under control as I prepare the family to leave so that I don’t make myself any sicker than I already feel. At the same time I’ve been looking forward to the opportunity to change my focus from me to my family and what I can accomplish and do for them. We are all looking forward to leaving our cares and worries behind. I’m in the last-minute, strategic, laundry and packing phase. You know the one, where you have to plan what you’re wearing for the few days prior to when you leave so that you can pack and do laundry accordingly. So this post will be brief. We are in desperate need of this getaway and, even if I have to spend 100% of it in a wheelchair this time, it is going to be just what the doctor ordered… but more on that later!