There one minute - gone the next

It's taken me a while to write this post. I wanted to make sure my thoughts were in order before I typed a whole page of crazy meandering sentences. Here goes nothing.

It started with the flu. Nothing too crazy - just the stomach flu. F was the first victim, I followed pretty quickly and J was the last to get it. It was the classic 24 hour bug. A totally awful 24 hours to be sure - but in the long run, pretty fleeting.

I was relieved when J felt good enough to go to the annual Santa party at my Uncle's house on Saturday the 17th. During the party, J complained of having a headache. He took some advil and I promptly forgot about it. Later that evening J told me that his vision was starting to get "fuzzy" in his right eye. I was a tad bit concerned at this point, but not totally worried about it. J suffers from the occasional migraine so I just kind of wrote it off as the beginnings of a helluva headache.

Sunday morning J told me that his headache/vision was bad enough that he wanted to stay home from church. I took the kids and instructed him to sleep. His vision continued to get worse. By Monday morning, he was barely able to see out of his right eye at all.

I got him an immediate appt. with our family optometrist. Thankfully, J was able to get in right at 8:30am, Monday (12/19) morning. After an extensive exam, our eye dr told John to get up to the Moran Eye Center at the U right away. He had his assistant fax J's chart to Moran and instructed J to go home and wait for Moran to call us. The eye dr told J that his eye appeared fine from the front, which led him to believe that something was wrong behind his eye, indicating more of a neurological problem.

Moran called with bad news - they don't take our insurance. However, they referred us to an opthamalogist in Bountiful - Dr. A________. J called Dr. A's office and after hearing that J was referred by Moran, they wanted him to come in immediately. At this point we both felt like it was unsafe for him to be driving, so I dropped him off around 11:00am.

Those of you that know me, know that I need information. I do not like to be uneducated about whatever it is I'm faced with. While I waited for any word from J, I started researching eye disorders. Dr. Google is very very knowledgeable but very very scary. Every condition I read about that matched the symptoms J had was terrifying to think about.

A few hours into his appt J texted me this little phrase: "optic neuritis."

You better believe that my 110 words-a-minute typing speed plugged that phrase into google so fast my hands were basically on fire. Again, some not-s0-great search results. I read about the chance of never regaining vision in the affected eye. About serious heavy-duty steroid therapy. About really crummy side-effects. But the one thing that I read that scared me the most: MS. Almost every website I looked at listed optic neuritis as one of the first symptoms of MS. I got as educated as I could about the different types of optic neuritis, the succession rate of steroid use as well as the chances of developing MS.

Right then and there I made the decision to NOT tell J about the MS stuff. I didn't want to freak him out. I figured that he had enough to worry about - GOING BLIND - that he didn't need the MS thing to worry him even more.

J called around 2:00pm and asked me to come get him. When I got in the car, his face spoke volumes. We were both quiet for a few minutes. Finally, J asked me if I had researched "optic neuritis." I told him I had. Again, both of us were quiet for a few minutes. J asked me if I had read anything about MS. I looked at him and said "yes, but I wasn't going to tell you." He started to laugh and told me that when his Dr. told him about the possible MS diagnosis, he wasn't going to tell me!

I don't know if that means we love each other so completely or that we both think the other is too much of a wimp to handle the hard truth. Whatever the case - we both laughed, which at that time, was a good thing. A spoonful of sugar helps the medicine go down, right?

When the Dr. explained the diagnosis of optic neuritis as well as the possible connection to MS - he told J that getting an MRI would confirm optic neuritis as well as show any "white spots" on his brain, indicative of MS. However, if we found the "white spots," getting health insurance in the future might be difficult. Together, we decided to wait a few days to see what J's eye did.

Tuesday was bad. Wednesday was worse. By Wednesday morning, J was completely and totally blind in his right eye. It was completely black. J called the Dr. and he sent J over to the hospital to get an MRI.

Thursday morning J's Dr. called him and told him he wanted to meet with both of us, that afternoon, in his SLC office, across from LDS Hospital. It was a stressful morning. I drove J to work around 8:00am. I think it was good for both of us for him to go to work. It gave J a chance to focus on something else and it gave me a chance to freak out without him seeing. I believe everybody needs to freak out from time to time. My freak out consisted of walking through target muttering to myself and occasionally putting random stocking stuffers in my cart. I'm sure I was quite a sight. The 30-something lady with her curly fro-hair pulled back into a pony tail, talking to herself, and buying like $40 worth of nonsense. Tinkerbell roll-on perfume? Sure!

We were both afraid of what was found on the MRI. a white spot? A lot of white spots? A tumor? Something other than optic neuritis? A neurological problem that couldn't be fixed?

3:00pm couldn't have come any slower. We were both somewhat tense during the drive. Dr. A met with us and told us that the MRI confirmed optic neuritis without a doubt. It also showed 2 white spots. Also, it showed that J was suffering from a case of sinusitis. Leave it up to J to bring a little something extra to the table every time.

The Dr. was extremely factual about the MS. Almost to a fault, but we both appreciated the straight-from-the-hip talk. Neither one of us deals well with sugar coating. You get what you get and you don't throw a fit. The Dr. said that he could be diagnosed with MS in 10 years, or maybe 10 days. You just never know. 50% of all optic neuritis patients develop MS. The Dr. recommended a neurologist at LDS Hospital, if we wanted to go that route. However, J's Dr. was concerned with the here and now - namely his complete loss of vision and how we were going to fix it.

Dr. A told us about a steroid therapy he wanted to start with J. Typically, they send people over the hospital for a vein "infusion" - meaning they mix the steroids with a bag of saline (i think?) and inject it over a period of 45 minutes or so. However, J's Dr had the ability to do it right from his office. He could bypass the saline/hospital and inject the steroids straight into J's vein over a period of about 10 minutes, saving everyone time and {a lot} of money. We were game. Dr. A explained the not-so-great side effects of such a heavy dose of steroids. Headaches, joint pain, anxiety, moodiness, insomnia, etc, etc, etc. Not a fantastic list, but a small price to pay if it helped get his vision back.

We did the first injection right then and made plans to meet the next day, friday the 23rd. Dr. A's assistant, Richard met us and did the injection and told us to come back on Christmas Eve Morning around 9:00am. We went on Christmas Eve, Christmas Day and everyday during the following week.

A week after we started the injections, Richard did another eye test. His vision was measured at 20/800. Not awesome, but at least it wasn't totally blind. He had this weird tunnel thing going on. The center of his vision was totally black, but the very outside edges were just very, very blurry. Richard had hoped to see more of a difference, but felt like J's case was rather severe - which might mean it was going to take longer to see a VAST improvement.

At this point Dr. A was of the opinion that the steroid injections had done all that they could have done. Apparently long term steroid therapy is not good thing. He prescribed John an oral steroid which would maintain a certain level in his bloodstream, but would also help wean him off the big ones. Again - not great side effects.

To say the week before and the week after Christmas was a challenging time for our family would be a huge understatement. The stress of John's vision disappearing, the possibility of MS, the terrible side effects of the steroids, the family 0bligations that needed attending - just the craziness of the holidays was a heavy burden to bear. I needed to pick up a few last minute gifts, but just getting to the grocery store was almost impossible. I had some very, very late nights and some very, very early mornings. Richard, Dr. A's assistant, preferred to meet us around 6:00am for the injections. I had a lot of help from parents, family members and good friends, who watched my kids, did my dishes and brought me pepsi's - which they were truly inspired to bring. I met a good friend for lunch the week after Christmas and getting out of the house did more for my spirits than almost anything else.

J did experience a lot of the crappy side effects. His body hurt. He was anxious and irritable. He couldn't sleep, but was tired. At any other time of year - it would have been okay - but during Christmas - it was hard. HOWEVER, having this happen right now couldn't have been better timing for a lot of reasons. John had previously requested the entire week between Christmas and New Year's off. Our friends and family members were around to help. The kids didn't have to be taken to school, to dance, to blah blah blah. We could just be at home, together, relaxing and recovering.

J ended up talking to a Dr. about the white spots. The Dr. said that at this point, without any other symptom to go off of, an official MS diagnosis would be hard to come by. However, he relayed the importance of not ignoring any additional signs/symptoms that something was going on. Numbness is a huge sign. He urged John to seek immediate attention if he ever felt like something was "off."

J has been slowly decreasing his steroid consumption. He had a follow-up eye appt last Thursday, 1/5. His vision was tested again and he measured 20/25. When the Dr saw his exam results, he told John that his recovery was "nothing short of miraculous" and that he didn't expect to see these results for another few months at the earliest. While I agree with the "miraculous" part - I did, in fact, expect it. We have had so many people praying and fasting for us. And I know that the Lord truly hears those prayers. I have absolute faith in the Lord's ability to heal and I know that John hasn't accomplished even a tenth of what the Lord needs him to do.

John is driving just fine and working just fine. He continues to get a little more acuity back each day. The best way he can describe his vision is that that everything looks "over exposed." The colors are all wrong. Everything is electric and vibrant looking. However, the blurring is getting better. The Dr. expects John's vision to get back to "normal" within the next 6 months.

So now we wait. Maybe MS will show up in 3 years, maybe in 30 years. We don't know, and we don't really care. We'll cross that bridge when we come to it. The important thing is RIGHT NOW. And we will spend RIGHT NOW with our family and serving others. Pay it forward, people.

Through it all, J did not lose his sense of humor. Yes, there were times when I wanted to tackle him, but we made it through it pretty much unscathed. And we DID enjoy the Christmas holiday. We had a good New Year's Eve, even though I was asleep by 10:00pm. Sorry John - you'll have get your kiss next year.

Anyway, that is our optic neuritis story. I'm sure there are parts that I've unintentionally left out. If I think of any, I will update. Oh and next time you see John - don't hesitate to give him a hard time about going blind and ruining Christmas. :)

John, I love you and no matter what happens I will always be here.