Just when you think things are getting better, they start rolling downhill again…
Lynn’s dietician put him on a special MS diet to improve the absorption of nutrients and, more importantly, iron since he struggles with iron deficiency. He has to eat three cups of green leafy vegetables per day, three cups of vegetables high in sulfur (broccoli, Brussel sprouts, asparagus, etc), three cups of bright-colored vegetables or fruit, and the meats each meal must be grass-fed meats or seafood. Seems like I’m feeding him all the time! And talk about hard to find…grass-fed meats are not at most grocery stores so the saint who makes Lynn’s meals for him had to shop around to find them.
Anyway, it doesn’t seem to be working. Instead of feeling better, he’s much worse over the past week. His hemoglobin, iron, and ferritin levels must be dropping. He has absolutely no energy, he’s cold all the time again, and just miserable. I look into his eyes, and he looks sick and weak. So, I’ve put in a call to get an appointment with a hematologist to find out if something is wrong with his blood. Meanwhile, the dietician is working on getting tests to see if the issue is the permeability of his intestines, causing him not to absorb what iron he’s taking in. Unfortunately, most of those tests are not covered by insurance, so we’re waiting to see how much they will cost. Of course, we must do the testing because we have to find out what’s wrong. He’s miserable, and when he’s miserable, so am I…Not because I’m such a sympathetic person…no I’m no saint…I’m miserable because he needs constant attention, and my patience in doing the same thing over and over is limited. Like now. I have to go cath him and I just did that less than an hour ago, and the hour before that…! Ugh…
I was hoping now that I need to try to go to work one day a week that, he would be well enough to make this process easy, but when he feels bad and needs so much attention, it’s more difficult. It went well this week, but I was only gone from 7:30 until 11:30. His mom stayed with him. Next week my friend will stay with him, and I’ll probably be gone a little longer. He’s been a bit depressed about me going back. He feels that I’ll be so glad to be away that I’ll want to go in more and more, and to be honest, I expect he’s right. It was very nice to be among the working again and not constantly be interrupted to do something non-related to what I was trying to accomplish.
As tired as I expect I’ll be on those days, I’m looking forward to it, although I admit I feel guilty. I know how much he wants me to be here, and I know I can probably give him better care than anyone else, but I need a break and some time to myself. He reminds me of my children and how they would cling when I left them at daycare when they were young. I always felt guilty about walking away when they were clinging or crying until I got to my car. When I drove away, it was a relief not to have the pressure of crying and clinging, and I admit, that’s how I feel now–relieved to be away.
I hope this works out. I’m returning to work, but I see trouble on the horizon. If he’s got a blood disorder, then it may be a long-term problem that makes it more difficult to leave. If it’s malabsorption, hopefully, medication will fix that. I don’t know what it is, but it’s something, and I sure hope they figure it out soon. It’s time to move on to some healthy days…
