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.

It can get depressing

"I don't want to live any more." That's what she said yesterday. Maybe the day before that. Maybe both of them. I don't know, it's said so often, or variations on that theme. "I want to die," is also common.
I can understand it. Maybe even empathize with it a little. For the past week I've had awful lower-back pain. Nothing is worse than low-back pain. It immobilizes you to a great extent. Now, I say nothing is worse, but imagine if not only your back hurt in that way, but several other joints in your body were hurting that way. And imagine that pain never really going away, just moving around to different joints--sometimes lessening a bit or even going away--then coming back a few hours later somewhere else.  That's what RA is like. No wonder they say, "I don't want to live any more." It would depress even the strongest person at times.

And it sometimes depresses us who care for them and love them. Not because we're tired of hearing them say things like, "I wish I were dead", but because we are nearly helpless to help them. Not entirely though. We can be listening ears. We can be their legs when they need them, or their hands. We can try and make their lives a bit easier in those times when the disease flares up. Sometimes the tendency is to get annoyed with repeated requests to fetch this or that. Getting annoyed should be avoided. The truth is, that using the joint when it's in flare mode will damage the joint further. It's a big catch-22--they need to exercise, but when in flare, can't because of the damage it will cause. That's probably part of the reason that those with RA live an average of 10-15 years less than a normal life span. So do your best to make things as good as possible for them, and avoid being annoyed as much as possible.

Sjogrens and RA

Ann also has Sjogrens Disease, which is another auto-immune disorder, and is often found as a secondary disease with RA. So she has a double-whammy (a triple whammy if you count that she's been diagnosed with fibromyalgia  as well). For more info on Sjogrens, click here: Clickety-click

Why I started this blog

There are many blogs out there trying to help those with the disabling disease, rheumatoid arthritis, but I can't find any where spouses of people with RA can find kindred spirits--those who are in the position of having to care for someone with this insidious disease.

My wife Ann is in the moderate to severe category for this disease. For those who have no idea what RA is, or how it actually affects people, I suggest you visit Rheumatoid Arthritis Warrior. This blog is written by  someone who suffers from RA, and she gives a true picture about what many people, including Ann, go through every day. Needless to say, it's better to be the spouse of someone who has RA, than to have RA ourselves, but being the spouse has its own unique challenges.

One of those challenges is the increased workload. Ann is in so much pain for most of the time, that she can't carry on her normal tasks. I'd say in my case, that where she used to do the bulk of the housework, such as dishes, laundry, general cleaning--that is now my bailiwick. I find it extremely difficult to do that, plus the yard work that needs doing, the cooking, the shopping, in addition to my full-time job. I've found that I just have to prioritize and realize that I can't get it all done and just do what has to be done at any one moment.

Another challenge is the mental challenge of guilt. When my wife is in pain, and I'm perfectly healthy, I feel a certain amount of guilt  for being able to walk up a set of stairs with no problem while she struggles up them in severe pain. I feel guilty for being able to do my normal things I like to do, like hiking.

I guess for me the biggest challenge is having a spouse who feels terrible 90 percent of the time. I don't like my wife hurting. No one ever likes seeing their loved ones incapacitated. There's a feeling of helplessness. I want to try and massage her pains away, but she hurts too much to even be touched sometimes. There's an old Star Trek episode, the original series, in which a woman has the capacity to take on and absorb other people's pain and heal them, albeit at great danger to herself. I would gladly do that for my wife if it were possible. But it isn't, and that's what's most frustrating. I'm so helpless to make her feel better. And her depression deepens as the pain goes on.

So, that's why I started this blog. Hopefully, I can add things from time to time that will help others in coping with this situation.