What a roller coaster!

Just when you think things are getting better, they start rolling down hill again…

Lynn’s dietician put him on a special MS diet with the purpose of improving 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 really 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.  I’m sure 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 just 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 that will be.  Of course, we will have to 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 over 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 actually very nice to be among the working again and to not constantly be interrupted to do something totally 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 about that.  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 really 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 to walk away when they were clinging or crying–that is until I got to my car.  When I drove away, it was a relief not to have the pressure of the crying and clinging and I admit, that’s how I feel now–relieved to be away.

I hope this works out–my going back 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 him 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…