Wednesday, March 23, 2011

…but how are you doing?

Leave it to adult children to always "tell you like it is"! And having seven daughter's....well, let's say that our household is never short on opinions or advice! And believe me, I would have it no other way.

My oldest daughter and her husband recently returned from a weeks vacation in the Dominican Republic. It was a much needed reprieve from work and winter weather. When she got home, she decided to check my blog to see how I have been doing. Always my biggest fan, and always supportive, she had some advice for me. It went something like this.."You know Mom, your articles are always so inspiring and there is always such a good message. But sometimes I just like to know how you are doing."  She makes a good point.

I think that when I made the transition from Friends of Theresa to writing a blog (which has been very healing and quite a good mental exercise for my cognitive issues) I somehow latched on to the assumption that people needed to hear a little more of the positive and not so much of the painful day to day illness. I actually think this has more to do with me than you. But in reality, Friends of Theresa was developed originally for one reason, and that was so that friends and family could keep in touch with my health without having to make a phone call or a visit - or to put the onus on my husband to keep everyone informed. So, that in mind, I hope to strike up some sort of balance. Thank you, lovely daughter, for more good advice!

I struggle with a lot of different issues these days. I'm actually working with my rheumatologist over the phone this week to try and get a flare under control. A flare, for me, is basically any increase in disease "activity". Sometimes it lands me in the hospital, like last month. And sometimes it just incapacitates me. Which does not take much since I'm generally "incapacitated" in some form or another. On a normal day, fatigue and pain are tolerable. Joints are sore, but I am able to use them.  Neuropathy, although very annoying, is not painful. I am able to eat without extreme pain or nausea, but my diet is limited. I may or may not be running a fever and glands are not swollen. Thinking comes easier and my eyesight allows me to read. Headache is lingering in the background of everything. Night time is better, yet still broken. I am usually awakened by extreme dry mouth and throat or joint and muscle pain. A drink and change of position and I am back to sleep.

When flaring, like this week, everything is exacerbated. Joints and muscles make movement very difficult. Fatigue is so extreme that being up longer than 15 minutes is very difficult. I spend most of my day up and down. Throw a load of clothes in the washer - lay down. Fix myself something to eat - lay down. Work on the computer for a few minutes - lay down. Let the dogs out - lay down. You get the picture. Headaches are intractable, neuropathy is painful  - and frightening - and nothing seems logical. Thinking is a real chore and remembering is even worse. Consistent sleep is next to impossible. Everything gets canceled when I have these weeks - which are more often than not. Just eating and going to the bathroom become all consuming and painful activities. I become completely housebound.  And if I can not get things under control, then I end up in the hospital.

I'm not quite sure what my issue is this week. It seems the past few months I have been taking a gradual turn in the downward direction and it scares me a bit. Three months ago I felt like maintaining was tolerable. I don't like the new baseline I seem to be establishing these days. Living one notch up from going into the ER is not "doable" for me. We have increased the chemotherapy to a maximum level, so the only other alternative is to start going back up on the prednisone. Not the plan for tapering we had hoped for, but I'm willing to do just about anything right now to feel a little better.

I also worry about the toll it takes on my family. It's not just the physical toll either. In fact, I now have a women coming in weekly to help me. But I am more worried about the emotional toll. It's tough watching your wife or your mom suffer. As much as I try to "look" well, they know the difference. And they worry. Walking on eggshells, looking for the littlest signs that mean Mom is heading to the ER. I hear it in their voices and see it in their eyes. I wonder about all the things they are not telling me in order to not add to my burden and it saddens me to think there may be times when they don't have "Mom" to turn to. And of course, all these things seem much larger the sicker I am!

In all honesty, the only thing that gets me through to the next day is making the most out of this one. Finding the good in even the worst situations. I read a quote the other day in Tolle's book,  A New Earth - "The primary cause of unhappiness is never the situation you are in, but your thoughts about it." When you think about it, that's really true. When I am stuck in bed and can't do anything else, if I lay there and tell myself how miserable I am, or think about how I am never going to get better, or obsess about how many times I have been in this situation, or worry about never getting out of this situation...well, I can send myself right down into a tailspin so fast that even one of Dave's BEST jokes can't get me out. But... if I look out my window and think about the beauty I see out there, or look into the eyes of one of my dogs, or think about how fortunate I am to have such a beautiful home to "be" in....well, I can find the blessing in the moment. Having the choice - I choose the blessing.

These weeks are tough, no doubt about it. And this past week has been a struggle. But like I always say, it makes a world of difference knowing my friends and family are out there keeping track of me. In the meantime, I'll do better at sharing the good AND the not so good times. I guess it's just part of the deal!


1 comment:

Anonymous said...

Thank you for being honest. I want to hit the "dislike" button for this disease of Lupus. I "dislike" that you need to suffer pretty much every aspect of the disease instead of being needled by some of the symptoms only occasionally. I think you are amazing as you DO live in the moment every day and that you DO find every possibility of happiness within it as you struggle through various heightened symptoms. Thank you so much for sharing! God bless you friend.