browser life

FINALLY finished with the taxes and assembling scrapbook pix for 2006/2007 (the wascally wabbit shown at left was in my front yard last summer). Got other projects competing for my attention, and I am months overdue for a But You Don't Look Sick article, but thought I'd better pop in here with something besides jokes. Just to prove that I am alive if unwell.

I don't even remember what I've even mentioned here since the Mayo visit in January except for financial stuff and that rant about finding out I owe the IRS money. So some of the following may be a repeat. Such is the peril of those with cognitive dysfunction, heh heh.

In January, one of my credit card accounts was compromised. I was in possession of the card at all times except for when I used it at the hotel in Rochester, but the attempt to use my account number wasn't until three weeks later, so I doubt that anyone in Rochester used it. I'm pretty sure what happened was that someone bought my number from a list, which is one of the most common methods of ID theft.

I wasn't the only one with this credit card company whose number had been stolen, and the company caught the problem before too much activity occurred, so I didn't get fraudulently charged or anything. But I still felt robbed all the same. And it was a major pain in the ass proving to the credit card company my identity.

The biggest obstacle to getting a new account set up was that I everyone I spoke to on the phone had a heavy accent (as in their first language wasn't English), and there was a lot of background noise because I don't think the account reps were in the United States. Not cool for someone hard of hearing like me. I kept thinking I was being asked what COUNTRY I lived in when the rep was asking what COUNTY.

Also, some of the identifying questions were ones I didn't know the answers to, such as geographical ones. I've only lived in Sioux Falls a year and hardly ever leave the house except to go to aquacise, so how the hell would I know the name of the park nearest my house? And I get the numbers of the interstates confused, so I don't know whether I live near 29 or 229.

The other thing that pissed me off about having to change accounts is that I'd had the same one for 10 years, and it was the one I used for automated charges. The credit card company had actually closed my account before they notified me of it, and Netflix had tried to make my February payment, and it didn't go through. So now I get to go back through my automated online accounts and change all the info, grumble.

Have been on the immuno-suppressant Imuran since January. I've had some hair loss and some stomach pain, but the main side effect has been HEADACHES, often daily ones. They are unpredictable and don't seem to respond to anything, but being on the computer seems to exacerbate them, which is another reason I haven't been posting much.

I would consider going off the stuff except that it does seem to be helping with the Sjogren's, at least with some things it helps. All the swelling in my glands and lymph nodes is gone, the rashes on my arms are gone, and the sores in my mouth are less frequent and less severe. Most importantly, my neuropathy symptoms, while not gone, are less constant and have stopped getting worse.

The trade-off, though, is that my fibromyalgia is bothering me more now than it has in years! I know that doesn't make sense, but it's true. I think it's not an actual increase in severity, it's just that I was on sensory overload trying to deal with two painful ailments at once, and now that one has improved I am able to comprehend just how bad the other was all this time.

So even though the medication is doing what it's supposed to, I am not nearly as functional as I had hoped. I had unfortunately underestimated just how severe my fibromyalgia is. It doesn't look like I'm going to be returning to the wonderful world of the employed anytime soon, if ever.

It's kinda embarrassing that as much as I have tried to be an advocate for getting others to understand that fibromyalgia can be disabling, I had pooh-poohed its true impact on my own life. So whether it's the Sjogren's or the fibromyalgia, I am still stuck requiring up to 12 hours of rest per day, still stuck with the sledgehammer of fatigue and dozing off on the couch, still stuck with significant cognitive dysfunction, still stuck with muscles that spasm and twitch like a marionette without strings, still stuck with pain that averages 8 out of 10 most days. The bitch is that there is pretty much no treatment for fibromyalgia that I haven't already tried.

The only thing I can think of to work on is exercise, which is tricky because I tolerate most activity so poorly. I have been on asthma medication for two months, so it is time to see if I can manage some mild exertion without shortness of breath. What I've got in mind is my Gazelle machine, which I haven't been able to use for the past year.

I'm going to start with just five minutes on Saturday and see how that goes. I'll probably use my albuterol prior. If it causes more fatigue than usual, I'll stick with the five minutes once a week until it stops making me feel worse.

Then I'll try five minutes two days the next week, five minutes three days the next week, go up to seven minutes for a few weeks, then 10 minutes, and then add five minutes every three weeks or so until I reach 30 minutes three days a week. This is of course barring any setbacks that could sideline me. I figure the quickest I'm gonna reach 30 minutes on the Gazelle is six months from now, but anything is better than nothing.

This is of course in addition to the aquacise I'm already doing, which is 40 minutes three days a week. I need the warm water therapy too much to ever give it up. But I suppose if by some miracle I could improve enough, I'd like to try underwater cycling someday.

I'm not an idiot. I'm not buying the assertion the Sioux Falls rheumatologists have made that exercise is gonna cure me. If that were even remotely true, I would experienced complete remission back in 2001 when I was going on four mile hikes in the mountains.

But I would be doing myself a disservice to not even test out whether I have actually remedied my exercise-induced asthma. If I still can't tolerate the Gazelle machine, fine, but at least I won't be lying when I tell my docs that I am doing everything I can to get better. And if I can somehow get some quality of life back in the process, that would be way cool.

So what have I been doing with myself when I've been in too much pain to use the computer? Watching stuff on the DVR, mostly. At first, I recorded reruns of "House", reruns of "Monk", Def Comedy Jam, specials from Comedy Central's standup marathon in January, and "Lost" of course.

Then in February, Turner Classic Movies had their "31 Days of Oscar", where they air Academy Award-winning films back to back, over 350 of them total. I managed to record at least 40 of them, which, by the way is the surest way to use up all the space on the DVR, heh heh. I generally have been watching one movie a day and have 15 left to view.

I have been keeping a list of the films I've seen so far, both on TCM and via Netflix, and I intend to do mini-reviews of them at some point. Just keep in mind that because of the sheer volume of stuff I've watched, my memory of details such as actors' names might be poor. But I will try to at least post whether something is interesting or worth viewing.

I am not quite caught up on medical matters. I still need to input the data from the Mayo Clinic tests on my lab summaries and look up a few neurological terms that were in the exam notes because I don't know what they mean. I am having some new vision trouble, so I have an appointment with an opthalmologist the week after next.

Also, I discovered while filing taxes that the medical expense sheets I created need to be tweaked a bit so that I can categorize them as prescription, hospital, doctor or lab costs. What I will do is use the document I used for 2007/2008 as a template. Then I will enter expenses throughout the year as they are incurred so I won't forget anything or have to spend weeks next February trying to do it all at once.

Between my Florida trip, Christmas, a baptism and all kinds of e-mail pix of my niece and two nephews, I ended up with 187 images I want to scrapbook. I have ordered prints, which will be ready Sunday. I managed to get a 12x12 album at Hobby Lobby for only $10, which is a good thing because these pix will fill the entire book.

As for But You Don't Look Sick articles, I think the first one should be about how to prepare for a visit to a research hospital like the Mayo Clinic. No, seriously, I feel like an expert on the subject now. When I get done with that, I have book reviews and some ideas for quick product reviews that should keep me out of trouble for awhile.

One of my resolutions this year was to cook more, and I've not followed through with that in the way I would like. I have made a few dishes for myself during the week instead of pre-made stuff, but I haven't tried any new recipes or used the rotisserie yet. And I haven't haven't had anyone over to the house for a meal yet.

Part of the reason I haven't invited anyone over yet is that the house needs cleaning! I'm sorry to say that I haven't been able to dust since Christmas. And the command center, while not as cluttered as it was while I was filing taxes, is still in need of tidying.

There's more, but holy cow, I've written a novel already. That's what I get for going so long between real posts.

Yep, I'm alive, just unwell.