February 21, 2011

Well, life has changed significantly.

I’m probably going to jump all over the place so please forgive me.

I started Copaxone on January 8th. The nurse was wonderful and the first shot hurt like heck all the way down to my fingers. Once I got used to it, it got a lot easier. In fact, the first day was the day that hurt the most.

Don’t get me wrong – EVERY shot hurt, but the first was the worst. I had a large, hollow circle around the injection site of my right arm for a few days. The other shots weren’t at all like that.

Shared Solutions gave me a calendar in which I kept track of my shots. The shots are daily and they’d rotate. The sites were the back of both arms, the tops of both thighs, both hips and the stomach, so if done properly (which I did), I did a shot once a week in each injection site.

Shared Solutions also gave me two auto-injectors. You put the shot in the injector and press a button. It will inject the medicine for you. It’s very easy. The medicine going in was always painful, but I always did it right before bedtime. Within 15 minutes the pain would lesson and I’d be okay again.

So I’d try to do my “health hour” every evening between 7:30 and 8:30pm. Soon it became 7:30-10:30pm or even 11:00. NOT GOOD. But, I was consistently taking the shots, so I guess it’s better than nothing. I would also take 1 tsp of cod liver oil with a swirl (fish oil that tastes good) chaser.

I’m sure you’re wondering why I’m talking in the past tense.

January 26th I had an MRI of my brain to see if there were any lesions there. It would only make sense that if I had lesions on my spine (one) that I would have some in my brain as well. I assumed (as a joke) that I had 52 lesions, so when the scan came back with 30, I’d be happy!

Well, the scan came back with zero. Nada. Null.

Now, you’d think this would be a good thing, but it’s not necessarily so. My neuro wanted to run one more test on me for Devic’s Disease – Neuromyelitis Optica. It’s a blood test that checks for certain antibodies.

It was sent to Mayo Clinic and two weeks later, on February 7th, it came back positive. I don’t have Multiple Sclerosis. I have Devic’s Disease. This is NOT a good thing. After a brief phone call with my neurologist I stopped my shots of Copaxone. Copaxone, from the little we know, doesn’t really help Devic’s Disease (NMO).

On Tuesday, February 8th I went to see my neurologist and he did the regular neuro tests on me. My legs are weakening. He also referred me to the Mayo Clinic to see Dr. Brian Weinshanker. He’s an expert on NMO and has seen approximately 600 cases. This is a VERY rare disease and there is no cure. It attacks the patient violently without remorse. I am now begging for MS and I’m in tears almost constantly.

I was told that Dr. Weinshanker reviews new cases once a week. Basically, I’m applying to see him. If he accepts me, it will be 4-6 weeks until the appointment at Mayo.

On Thursday, February 10th, Mayo called me! My appointment which will last from 5-7 days will begin on Monday, March 14th. I’m hoping that the reason he wants to see me is because he thinks he can do something for me. Please God – I want to live.

I’ve been cleared to take a drug called Imuran. It’s an immune suppressant drug. When I’m in a better mood, I’ll explain how it works. I’m also continuing the Swank diet. I’ve cheated a little bit, but only a little. I know I feel much better when I follow it closely.

Boris had never heard of this disease until me. My neurologist has never diagnosed it until me. I’m a wreck! A basketcase – you name it. Everyone is saying that I am so strong, but I’m anything but strong.

I’m trying to say the Rosary daily and I’m asking Fr. Solanus Casey to pray for me. I’m scare and I know that worry is from the devil, so I’m trying to stay positive.

But I also need to be realistic. I’m getting a video camera and I’m going to start videotaping me giving advice to the kids. I’m also going to get all of our paperwork in order. I’ve done some of it, but not all of it and there’s a ton to do.

I need to get a will written out and also do the hospital paperwork that of course, I can’t think of the name of, but I’ll call it the “pull the plug paperwork.” I need to buy burial plots and plan the funeral. I want all of this taken care of now just in case. Then 30 years from now we can all look back at my paranoia and laugh! GOD WILLING!

Today’s been a hard day for me. My legs are tingling very badly. I’m wobbly. The skin on my stomach hurts like it’s been burned. I’m tired but I can’t sleep. I’m emotional and crying at the drop of a hat. I’m scared.

What I need to do is get a good night’s rest and start fresh tomorrow. I need to focus on Christ and all of the blessings that were given to me. Even though my life may end up short, I need to live it through the Grace of God.

I’m very fortunate. Most people who have Devic’s Disease are misdiagnosed for several years. I was misdiagnosed for a month. I’m sure God’s hand was in that. So, I need to concentrate on His blessings, not what this disease could do to me.

It’s hard, but I can do it.

This entry was posted in Devic's Disease, Multiple Sclerosis, Neuromyelitis Optica, NMO. Bookmark the permalink.

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