It has been a long week. I mean, really, really long.
As you might remember, Matthew's MS doctor put him on oral steroids a few weeks ago to try to control his current MS flare-up. He hasn't noticed any difference thus far. Monday the 9th he spoke on the phone with his doctor, who said she'd try to get him scheduled for I.V. steroids. Appointments usually take a while to make at the VA Hospital, so we were surprised when he got a call the very next day to schedule. And they were able to get him in right away! It's a 3-day treatment, so he made appointments for Wednesday, Thursday, and Friday.
Well, since Matthew's eyesight is still not reliable, I have to drive him. Not counting any time actually spent at the hospital (check-in, waiting, appointment, getting travel pay), it's a 3-hour trip. This meant getting last-minute babysitting three days in a row for long periods of time. It can be tough to get childcare just for a quick trip to the grocery store.
My heroes for those three days are my sister-by-birth Dorcas and my sister-by-choice Savanna. Dorcas took my kidlings for Wednesday and half of Thursday; Savanna picked them up from Dorcas on Thursday and brought them home, and watched them again on Friday. Savanna said Fletcher also helped her out a good bit on Friday before he had to leave for work, for which I am very thankful.
So--we drove up to Portland and back Wednesday, Thursday, and Friday. By the end of that time we were burnt out and frazzled, and so were the kids. They missed us, and their crazy behavior told us so. Oh my, their behavior has been enough to make me want to rip my hair out! And Saturday I had more things going on, because my Uncle Jerry was in town visiting, and I hadn't seen him for probably close to ten years. I didn't want to pass up the opportunity! So Uncle Jerry and my sister Annetta drove out to my house to hang out for a while. I was very, very glad not to be driving anywhere!
Today we were supposed to go have dinner with the family in Salem, but my children were acting out in the most dreadful ways. I'm afraid I lost it and started yelling. It takes so long to develop patience! In any case, I decided it would be better to stay home. Poor Rowan sobbed for twenty minutes after I told him, although he had been warned many times about having to stay home if he did not obey. Sometimes it seems like potential consequences just don't click in his mind. Sigh..
Now I'm counting down the minutes to bedtime while Rowan and Henry watch Go, Diego, Go! Actually I've been anticipating bedtime since at least 4:30. I am so ready to stop being an adult today!
There's one more thing I should mention. When Matthew spoke to his doctor on Monday, they discussed the fact that Tecfidera has not been controlling his multiple sclerosis like it should be. So--in all probability, he's going to go back on Tysabri, at least for a while.
Yes, that Tysabri.
Yes, the medicine that could potentially give him a fatal brain disease.
Yes, the medicine he stopped taking because antibodies for that fatal brain disease were found in his blood.
This is an extremely scary thing for us. We don't know what will happen if/when he starts up Tysabri again. He's stopped taking the Tecfidera so it can be completely out of his system before he starts the other. Who knows? It might make everything better, give him feeling in his feet again, bring his pain levels down from the permanent-minimum of 5. It might do nothing.
It might kill him. We simply don't know. That is a risk that Matthew is prepared to take, because the way things are going now is simply not sustainable. He is exhausted simply by existing. Breathing. Opening his eyes. Making a cup of tea. Standing. Sitting. Any one of those drains his energy far past what you or I would call extreme fatigue. Resting for a while sometimes helps, but not always. Sleep sometimes helps, but not always. The fatigue just goes on and on and endlessly on.
So pray for us, please, as we approach the medicine transition time. Pray that we make the right decisions for Matthew's health. Pray that we keep enough strength to get through each day. Pray that we don't lose our focus on what is important. Pray that we show kindness and love to our children even when we're grumpy and tired and just want to crash.
And if you feel like taking the children off our hands for an hour or two--we would sure appreciate it.
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