A new book on chronic illness

Sick and Tired of Feeling Sick and Tired by Dr. Paul J. Donoghue and Dr. Mary E. Siegel

They can be so fragile...

I deal with a huge amount of frustration on a daily basis as a caregiver. Part of that involves the extra work I have to do, which keeps me from doing a lot of things that need doing around the house. For example, making dinner takes a huge chunk out of my day, and as I ponder that loss of time my frustration mounts because I can't get to fixing the lawnmower (and thus, mowing the lawn), or even getting the bathroom cleaned. I voiced my frustrations yesterday in front of Ann and she got very upset. She blames herself for my extra load, and my complaining about not being able to get it done did nothing to assuage that guilt. I've got to not get so frustrated with myself for not getting it all done, or at least, if I am frustrated, I've got to calm down and not voice it. A person with RA doesn't need the extra stress on her body of guilt, which is undeserved. She was down on herself once, calling herself  terms like "useless" and "helpless". She said things like "I shouldn't even be here any more because I'm of no help to anyone." I asked her, "So do you feel the same way about the children with cancer in Primary Children's Hospital? If you don't then stop feeling that way about yourself." She helped others a lot before she got sick, and just because her ability to do so now has dwindled in some ways, doesn't mean she's of no worth.

I've got to remember to calm down my frustrations so she doesn't get that impression ever again. I think I need to follow some kind of a plan like this. And I really like this post on How to Keep Important Stuff from Slipping Through the Cracks. At any rate, getting frustrated accomplishes nothing, and in fact makes things worse. I've really got to remember that.

About time I updated this thing

I haven't written anything, because I don't want to come off as a complainer. Ann has the real troubles in life, not me.
 So today, Ann had her doc's appointment and when the doc found out how many nodules she had, she said, "Oh my gosh, this disease is progressing too fast." Ann is going to be put on an additional drug, called Enbrel, and is going to have to be very restricted on sick people coming in contact with her. This makes it very hard, not only on her, but on her family members who so dearly like to come and visit, but whose children pass around colds, etc., frequently. We dearly love to see those little ones.

Venus Williams has Sjogrens Syndrome

Sjogrens is quite commonly found in those with RA, and it's one of the related diseases that my wife has. It's sad that she's had to withdraw from tennis tournaments, including the U.S. Open because of it. Here's a link at the great grantland.com to the story: Venus Withdraws

Are we selfish?

Last night, I suggested to Ann that I might want to go on "one more hike" before October. I'd say the look on her face was one of being crestfallen. It's not like I've spent the entire summer gone. I haven't. I went on a hike in May, nothing in June, I was gone for a three night trip in July, and an overnighter in August. The hike I'd like to do is just a day trip up to our local mountains, and I probably won't have another chance to get out until next year because I will be getting on the overtime list at work to try and pay off debt. I have a high chance of getting called in on my days off. I think that's something she's not looking forward to. The thing is, I'm not either. I'm looking towards it with dread actually, because I really need the days off.
I don't know whether I'm being selfish or not. I don't want to hurt her who so badly wanted me home that she circled my remaining days off on the calendar before I would go on the O.T. list. I guess I need to ask whether or not any particular hike is more important to me than spending time with my best friend Ann.

Found some great tips for caregivers

I found a great link today. There are many articles on RA within this site, so click around to find the various articles. The one I particularly liked was the one called Rheumatorid Arthritis: A Caregiver's Guide. And once again, I'm going to suggest to you that you read through the Rheumatoid Arthritis 101 Course. It gives a lot of info on what exactly rheumatoid arthritis is, who gets it, and what to expect.

Good to see her laugh

Laughter comes all too rarely these days. It was nice to see it as she talked with some of the women in our church meeting on Sunday. Sometimes, nothing makes me feel better than to see her being able to laugh or smile. It's not as frequent as it once was and the rarity makes it needed and special.