About time . . . =)

It’s been awhile since my last update and that’s because typing has just become too difficult. On a good day I am able to type with my left index finger, but on a typical day I have to use the knuckle on my left index finger. In addition, my arms can’t reach as far and I’m often unable to reach the top two rows of keys. I’ve had a lot of requests to keep the blog updated, so if anyone would like to volunteer, or rotate volunteers, to help me update the blog once a week or so, just let me know! =) (Thanks to Mom who’s typing this now.)

I’ll post updates about myself this time and updates on Joshua the next.

The last update was that my pain had gotten better from the feeding tube, but that only lasted a day. I was back in the doctor’s office later that week and apparently the tube had been placed too tightly. My doctor was able to loosen it in his office (ouch) and within a day or two I was feeling much better.

I can no longer roll over in bed at all, so Bob has to get up several times a night to roll me over and reposition me. He does this in addition to getting up and feeding the baby, so needless to say, Bob is often exhausted. If he’s lucky Joshua and I will time our awake periods together, so Bob only has to get up twice but on a typical night Bob’s not that lucky and gets up 3-4 times. Joshua usually spends the night at my Mom’s once a week and on those nights Tana has volunteered to help roll me over so Bob can get one night of uninterrupted sleep a week.

I’m not sure if I’ve posted this before but I’m 100% wheelchair bound. We have been able to transfer me between the chair and bed and between the chair and toilet by someone lifting me to a standing position and helping me take 1-2 steps while holding on to me. Just this week we’d had difficulty with this process because my legs aren’t bearing my weight as they had. This has resulted in my almost being dropped four times this week. Most of those times have been with Mandi, our caregiver, but she was able to lift me back on the chair by using her leg. Mandi has been great in so many ways, but it’s especially comforting to me that she’s trained in how to handle these situations and she remains calm (if she panicked I’d definitely freak out). We will probably be having to use a lift system to transfer me soon. We are going to avoid this as long as possible because the entire process is a pain for both myself and whomever is having to transfer me.

(Since Mom typed this update, we had an instance last week in which my legs wouldn't hold me and I ended up on the floor. Bob worked from home that day bcz he could tell I was having a bad muscle day, which ended up being a good thing bcz it took both him and Mandi to lift me back into my chair. Damn, trati0rous legs!! = )

Over the last few weeks I’ve also developed a type of “choking” even though I haven’t swallowed anything. It typically happens after I’ve been talking for awhile but is helped by drinking water. I have clinic at the end of the month and this will be one of the items we’ll be talking about.

I started the drug trial at the beginning of the month. I am taking Tretinoin and Actos, in addition to the Rilutek. The Tretinoin is an agent used in chemotherapy for Leukemia patients and Actos is used to treat diabetes. Although one of them is used in chemotherapy, I have been assured that I will not lose my hair. =) I haven't had any side effects so I was worried that I was in the placebo group, but my dr. has assured me that plenty of others haven't had side effects either.

Speaking of my hair, I had it cut short because it kept getting in my face and I am unable to move it. I’ll try to get some current pics and update the blog.

Last but not least, my last working day was Feb. 27^th and I’m now on leave of absence. I have started the process of applying for Social Security, which has been much more challenging than anticipated or than it should be. I thought I’d really miss work and go crazy without it, but I’ve had so much more energy that I wish I would have stopped earlier. Even without working, I still manage to keep busy and my mind active. For someone who has her degree in English, there are a surprising number of classics I have never read, so in addition to fun reading, I have Jane Austin on deck and Tana has recommended 1984 when she's finished w/ it. I spend time every day following up on medical appointments and bills (yes, there are enough for this to be a daily activity!) and the weather has been great so Mandi and I take Joshua for a daily "walk" (I roll, Joshua strolls and Mandi walks =) Although I can’t “parent” him as a typical parent would, I have loved being at home with Joshua.

Joshua had his four month check-up last week and has a follow-up w/ the cardiologist this week, so I 'll try to get those updates posted soon.