Diagnosis...

As a blogger, I really am terrible. Trying to get a handle on expressing myself, it's difficult to find the time in the day for this. However, it has been pointed out to me that to take proper care of oneself, you must do it every day. For example, walking is great exercise, but not if you do 20 miles one day and then don't do it any more for three months. Half an hour a day will do ya! But you really do have to make the time each day. So here I am again, planning a specific half-hour period to force myself to participate in thinking about my day.

I suppose most bloggers have a much better plan in mind, but I'm really here to maybe touch the lives of others or be touched back. Specifically, I started out thinking that I could just talk about everything, but really, I need to talk about two things: Alzheimer's (my mom) and RSD or CRPS (my husband).

My mom made the move back up to where we'd grown up, and where I still live, just a little over two months ago. I'd made the arrangements for her to live in an independent facility; a place that offers the ability to move to assisted and further for her care as we move forward. She is now fully installed, new doctors have been found, and we're beginning to settle into a routine. I see her two to four times a week, but mostly on Sundays when I take her to church, then to brunch, and after that we do something of her choosing. Life with mom right now isn't bad: she's bright and intelligent, though having trouble with her memory, but the biggest problem appears to be paranoia. It's not terrible, but I can see that it is the one thing that causes her the most grief - and those around her.

I've begun reading books on Alzheimer's and hope to better educated about what to expect as we move through this process. I had a close friend at work whose father lived for nearly ten years with his diagnosis, and towards the end it was very difficult for all concerned, but it helps me to have some perspective.

My husband was diagnosed with RSD (reflux sympathetic dystrophy, now more commonly known as CRPS-chronic regional pain syndrome) five years ago. Unfortunately, the diagnosis came late for us, as if it's caught early there's more help for the patient. Most likely his disease process came about as a result of one of the many surgeries which followed an initial injury more than ten years ago when he was attacked by two dogs, Rottweilers. He had actually recovered fairly well, though with significant pain and problems in one forearm, but was back to work and a contributing member of society. He began having more serious swelling in his lower left leg, one of the other serious dog attack sites, which progressed rather rapidly and later moved to the other leg. As anyone with CRPS knows, there are other symptoms, but it's not really my intention to educate people here about the disease, there are much better sites for that information!

So here we are today: my husband spends more than 23 hours a day in his bed to keep his legs elevated and help alleviate both the swelling and the pain. He's on significant medications, which have really changed him as a person. I don't think even he realizes how much. Though he has a reasonable disability package through his last job, he has become addicted to online purchasing. He's run through quite a number of items of choice but nothing which I'll be able to make much money off of in return.

Though I have tried not to go there, I am now taking over everything - though with much struggle. He doesn't feel like he's contributing and so doesn't want to give anything up: paying the bills, etc. Our relationship has deteriorated to the point that I don't even know whether we can save it, or if he really wants to. I don't plan to leave him, but I do have a young daughter for whom I'm responsible and I will do whatever I have to in order to make certain she has what she needs to thrive - and that includes a good atmosphere in the house.

Recently having hit a real wall in the relationship, we came to agreement on four specific items, one of which was me taking over responsibility for most things. Assuming he follows through, then I will stay, but I have nearly reached the point of no return. I have to be able to know that the bills are being paid and that we are at least solvent, or I will go and find a place where I can be solvent on my own.

That seems like enough for today! I've danced around these two topics for a while now, and now they're really out there. Maybe tonight I'll be able to sleep - something that's eluded me for a long time. From here on out I hope that I'll be able to just talk about our daily activities and how we're dealing with the two significant health issues in our lives - and looking for any insight as to good ways to deal with them!

Taking care...

Over the course of the last 10 years or so -- is it really that long? -- since my husband's first injury and now, just two years or so since his actual diagnosis with RSD, I've done a really good job of keeping it all together. Or at least that's what I've thought.

Friends will say things like: I can't believe how well you cope, or, He's so lucky to have you. While really I can't get past the part where it's his life that's hard. My life is great, I have my health, I can go to work every day, I can get out of bed, I can go to the store and drive my car. I've really gotten almost tired of the feeling that people are worried about me when, let's be serious, if there's anything at all wrong with me it would probably just be the guilt. You know, the part of you that feels bad when you leave the house, the part that hurts when you are able to hike the hill and he's at home just waiting for you to come back.

Is it really possible to guilt yourself into physical illness? Sometimes I do think so. If for no other reason than the horrible sleeplessness that's really taken over my night-time. I'm not sure why I can't sleep, I just know that it's difficult. Oh, sure, as soon as I lay down I fall quickly, but that's a result of sleep deprivation. I am so exhausted, it's not unusual for me to fall asleep before even the 8 o'clock shows are over. Then I'll wake up somewhere before midnight and, boom, that was it. Now I'm awake. I'll play around on the computer, maybe sew, lay down off and on, but really no success. By about 5 in the morning I'm starting to get really tired, and then I may be able to get in an hour of sleep, but when I get in the shower I just know that I'm going to be struggling through my day at work.

History tells me that this sleeplessness is a symptom, and yes, I know that it is. I probably even know what it's a symptom of. And for this reason I have finally sought some help. So today was my second session with a counselor, someone my general practitioner recommended. It is amazing how hard it is for me to talk about myself and even how guilty I feel going to this person. I haven't confessed this act to my husband yet, and I don't know that I will. He feels bad enough as it is, he shouldn't have to worry about me. I'm not clear how long I will see this person, how long it might take for me to wake up and figure out how to get back on an even slope (though isn't the definition of a slope a slant?). How am I supposed to help him when I'm sliding downward myself? And his energies really would be best spent taking care of himself and certainly not worrying about me.

So I've begun to make sure I'm "taking care" of myself and today the assignment given to me was to think a few times during each day about what it is that I'm feeling. Really, truly ask myself: How am I feeling right now? And then I'm supposed to write down my responses and keep track until my next visit. Well, this is enlightening. I didn't even get halfway down the road when I realized that most times my answer will probably be "mournful." Even the word saddens me, more than I already am.

I guess I'm mourning the loss of so many things that it's been hiding from me that this is what I'm feeling. The loss of our bright future together, the loss of a love life, the loss of having someone take care of me occasionally, the loss of innocence at the world (there are bad things that happen and it's been proven now), the loss of who I was before. And those are just the first ones that come to mind when I think of me. I certainly have a whole other couple of lists related to my husband and my children.

Oh, woe is me, I can't believe I went from the perkiest girl in class to this! But this is why I've started seeing this person. I believe I can get back to that perky girl (oh, yeah, I guess I'm no longer a "girl" -- age has a tendency to take away that moniker!).

So it only took me to my third blog post to get to the real truth of why I've started blogging. I need to journal, but I hate to write by hand. Putting my thoughts out in a blog is a bit risky, as who knows what others will think, if anyone will really read this, but it is an opportunity to get down somewhere -- really, of course, out of me -- what's going on and how it makes me feel. Cleansing really.

I promise to not dwell forever on the sad. Please check back as things get better, as I know they will. Then I will spend more time talking about my husband's illness, how it came about, what the diagnosis is, and what it means for him. Because, after all, I do believe that this is the best use of my space. I have been so enriched reading the blogs of other RSD sufferers and their spouses, I can only hope to achieve maybe half of what they have for me. It's just great to know we're not alone.