Living in the Now

Living in the Now

It’s been far too long since I posted an update on Josh’s condition, so here we go, finally.

Specialty Clinic Re-Cap

As many of you know, at the end of July we made a spur-of-the-moment trip to Michigan. Josh had experienced a serious negative reaction to the medication he was on (Syprine), which caused his symptoms to worsen significantly.  In the days leading up to our trip, Josh’s entire body was shaking constantly, even while lying down. This was a scary time for us. Josh finally decided to contact a Wilson Disease specialist at the University of Michigan. The following day the specialist urged us to bring Josh to the clinic as soon as possible. We bought tickets that morning and flew out the next day.

Josh was able to see two different Wilson Disease specialists. Both specialists agreed that Josh’s best option was to go back to solely taking Galzin (zinc). They told us that although it was possible that Josh would continue to get worse during the next few months, the Galzin was the safest bet for an eventual full recovery. Josh actually seems to have the best possible symptoms, as they explained that most Wilson Disease patients with tremors fully recover. However, they pointed out that a full recovery could take up to eighteen months.

The specialists at U of M have been coordinating with Josh’s neurologist here to monitor and treat Josh. Josh has a follow-up appointment at the clinic scheduled for mid-December. It has been a huge comfort to have a treatment plan prescribed by experts in this disease. Since our visit, we’ve been able to move forward with confidence that we are pursuing the best possible treatment plan for Josh.

We’re incredibly grateful to have had access to these specialists. It is also a crazy blessing that Josh’s parents live just twenty minutes away from the Wilson Disease clinic!

Current Status

As I mentioned above, by the end of July, Josh’s entire body was shaking. Some of the worst tremors were in his legs, making it impossible for him to sit still. After starting back on the Galzin, Josh’s symptoms remained stable. However, over the past month, Josh’s legs have gotten significantly better. Although they still shake when he stands, they no longer shake at all while he is sitting or lying down. Any improvement is a good sign, and lately we’ve felt extremely hopeful about Josh’s recovery. Also, at Josh’s latest appointment with his neurologist just a week ago, she noticed some subtle improvement in the dystonia in his hands, which was also encouraging.

The tremors in Josh’s wrists, fingers, and shoulders are still quite bad. These tremors are the most frustrating for him as without the use of his hands, he is unable to do many basic things. However, the tremors in Josh’s legs became very serious right before they began getting better, so we’re hopeful that his hands are just following this same pattern and will soon begin to improve as well.

Right now we’re basically just playing the waiting game as we wait for Josh’s recovery to continue. At the beginning of August, Josh was forced to take some extended medical leave from work. Josh is a web developer and with the tremors in his hands, typing has become nearly impossible for him. However, this week Josh has been experimenting with a speech-to-text program on his computer. He’s hoping that with the use of this program, he’ll be able to return to work at least part-time.

Please be assured that due to a good store of savings (as well as my own part-time work), we are financially secure despite Josh’s break from work. It amazes me how even though the Lord does not stop our trials from coming, He will bless and prepare us in other ways so that we can better endure those trials.

The Lessons Keep Coming

One big thing we’ve both learned, is that even when you’re going through a trial, you shouldn’t put your whole life on hold. When all of this first started, we pretty much stopped socializing or going anywhere other than doctor’s appointments. We rationalized that going out would be too hard for Josh, that we were too tired and stressed, etc.

This was not a wise, or a healthy thing to do. Sure, depending on your personal trial, you may out of necessity need to take a break from some things you would normally do. (For example, we’ve had to put unnecessary travel on hold for a while because it’s simply too difficult right now). However, sometimes a difficult experience will continue for months, years, and perhaps a lifetime. You can’t just not live your life. Never having any fun, never relaxing, will just make any trial harder.

Luckily, we finally realized that we couldn’t keep delaying everything until Josh recovers. We realized that we simply need to make the most of what we can do now. If we go out and Josh gets too tired, we simply come home. When we want to play a board game, I just move Josh’s pieces around the board and draw his cards for him. If we want to eat in public, I help Josh just like I do at home and we choose not care about what anyone thinks. We’ve simply learned to adapt.

How Do you Learn Best?

At Josh’s first physical therapy appointment they had us fill out a survey. One of the questions was, “How do you learn best?” The three options for a response were: by seeing, by hearing, and by doing. We both immediately said, “by doing, obviously!” Our Heavenly Father also knows that we will learn best by doing, which is why we must go through trials ourselves. We might learn something by seeing someone else’s experience or by hearing about someone else’s experience, but we will always learn the best and the most through our own experiences.

I don’t think that I can even begin to tell all that Josh and I have learned from this experience. It’s been a trial with many different stages and lessons. First, we experienced the anxiety of waiting for a diagnosis. Then, we faced a myriad of difficulties with getting access to medication. Next, we dealt with Josh’s adverse reaction to that medication. Now, our patience and faith are continuing to be tested as we wait for Josh to recover. However, we both feel that the worst is over. As I said before, we’re feeling positive and hopeful as we look to our future.

Living in the Now

Josh and I frequently joke about how difficult we thought our life was back when only his head was shaking. He often remarks that he would do anything to be able to go back to dealing with just that one tremor. That thought has served as a good reminder to appreciate the blessings of today.

In the past, I have had a bad habit of obsessing over the future. I have too often been focused on looking forward to the next stage of life, rather than enjoying where I’m at right now. I would think, “It’ll be so great when we…” or “If only we had…” This experience (and the way it progressed so rapidly) has made me stop and think about how much I love about our life. I want to be more grateful for our life as it is right now and not take our blessings for granted. Each stage of life can be wonderful, even while waiting on future blessings.

2 thoughts on “Living in the Now

  1. You two are utterly amazing! I’m so inspired by your insight and positive attitude. I’m so glad YOU moved into the 12th ward! You have blessed MY life

  2. I love your blog Shaylee. What a great way to share things you are going through with others. Also when we write down our thoughts I believe it helps us get through life. When we are down we can look back on our writing and see how far we have come and the miracles and blessings in our path. I am a great collector of thoughts. Here are some I found on living in the now.
    Emily Dickinson “Forever is composed of nows”
    Eleanor Roosevelt ” The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences. ”
    A.A. Milne “What day is it?” It’s today,” squeaked Piglet. My favorite day,” said Pooh.
    Rainer Maria Rilke “Let everything happen to you. Beauty and terror. Just keep going. No feeling is final.

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