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One week after I started my four-day run of IV Solu-Medrol and the results are not stellar. My balance is so-so, but I find it easier to get up from my glider chair. Around the house, my aid of choice is a single forearm crutch as it leaves me with one hand free to carry stuff, but it also doesn't give me much real support -- sure, I can catch myself if I start to tip, but it's, right now, not feeling like it's enough. My house is friggin' tiny - 960 sf - so a walker would work, but furniture might have to be rearranged in spots. A w/c is out of the question. That little voice in my head is telling me to prepare for changes. Changes that will probably come with the heat of summer. I need to get my proverbial ducks in a row so that I am ready. You know, the "plan for the worst, hope for the best" mantra I've been chanting for lo, these 27 years. That works like a charm - because once you have addressed all the contingencies, you don't have to give the...

Today, that is the question. I don't feel bad, per se, I just feel - off. It's probably due to the rapid withdrawal off the meds, combined with my so very odd sleep UNschedule. Remember, the night before last I slept very well, and felt good all day. Last night I slept almost too well, and, perhaps because it was Sunday and I was listening to KUOW (NPR), that I stayed in bed long after I should have arisen. Besides, it seemed cold, grey, and rainy. I could be wrong about that, I was after all, still in bed! But that's how I envisioned the outside. Once I got up I took a nice shower, and had a cup of coffee. A good way to start the day - along with the Sunday paper which is 85% ads. Over the weekend I have lost all the water weight I gained - which is a big plus, because the steroid bloat sucks. Besides which, I am always amused that I can lose seven pounds overnight -- whether it means anything or not! My brain feels foggy today, and that most assuredly is due to staying in...

Today I felt good. No muscle spasms (ah my favorite benefit from the 'roids). I got a good night's sleep without a pill. I missed a phone call from my friend who is going to buy me an emergency cell phone, and when I called her back it was all rainy and sleeting outside so we will get together later next week and get it. I have been able to get up from my glider chair with less trouble than I've had in weeks. I let the dog out, twice, and fed her. Yay, me. But other than that, I didn't do much at all, [please note that the following is my DH's one and only contribution to this Blog: "except that my husband and I went at it like crazed rabbits!!!"]. No explanation forthcoming, I'll leave it in for your reading pleasure. We participated in the hour of light's out America, or whatever it was called by setting out several ca ndles and turning out the lights, and I read your Blogs by the light of the laptop. I was actually quite pleasant, and quiete...

Today was the fourth and final infusion of SoluMedrol for me. The results, so far at least, have not been outstanding, but even my husband mentioned today he thought I was walking a little better. He doesn't talk about my MS very much. He's not big into allopathic medicine, and prefers natural remedies or ayurvedic medicine. Hey whatever rocks your boat. But his ways are not my way, and I after all have to be the one who is in charge of my body. So he went with me today, and didn't have to witness any pokes as my site remained viable. They were booked up, so it took about 45 minutes longer than I had anticipated, but no big deal. Just before I left, a good friend of mine called. She wants to buy me a cell phone with a prepaid card to have for emergencies. I saw an ad in a Radio Shack flyer and told her about it, and apparently she went over and checked them out and thought it was a good deal, so we may go over tomorrow (I think the last day of the sale - not sure) so I can...

This has been a busy week for me. As I said, I saw my neuro last Friday, and we decided to give 4 days of SoluMedrol a try, just for shits and grins. I went to a different infusion center which is actually just three floors above my urologist's office. It's kind of like a get well soon people assembly line They have eight recliners lined up with a small table and the med pole between them; their are three nurses there except at lunchtime (but other nurses are around to assist if needed). They have a coffeepot that is usually empty by 11:30, and envelopes of Swiss Miss, and some peanuts and Ritz crackers for a snack. It's sort of a no frill place, but seems to operate quite efficiently. Apparently, the reason I couldn't get into St. Joe's is because they are in the process of moving that wing over to the new outpatient building. One thing that was different is I was briefly screened by the Doctor who started up this whole department, and who is an internist who speci...

Tomorrow I have a cath. change at 11:45, followed by my first Solumedrol infusion at this new clinic, which I believe is in the same building at 1:40. I have a friend who is spending a few days with me who will go with me just so she has something to do. I'm sure it will make it go faster. So that's what's up with me, and now I am actually going to go to bed at 1:15 AM. I mean, I'll start to get ready as soon as I sign off here, but I should be in bed and, hopefully, asleep, by 2 AM. Good Night and all that.

I went to see my neuro yesterday for my quarterly appointment. I wasn't doing as well as I thought, I guess. On my way out to the garage, I could not lift my left leg up the second step! DH saw me through the kitchen window and came to my rescue. (Then decided to come along to take me to my appointment!) Could this be a result of the exhaustion I felt last weekend? I doubt it. History tells me that rest always saves me from exhaustion, and I got plenty of rest this week. But this might explain why I ended up missing my meeting Thursday night. I, and a few others, went to the wrong address for the meeting, and while I was at the wrong building I went to the bathroom which was down two short halls. The door must have weighed 40 pounds! and with a walker, it was very tough to get in. Then the toilet seat was on the low side, which made getting up very tough. To say I was wiped by the time I was done is not just a pun, it was a disappointing reality. I told one of my sisters, who wait...

Upon reflection, everything that happened over the weekend that was onerous could have been prevented , except for the LONG HALL FROM HELL. Instead of going out for dinner when I was admittedly exhausted , I could easily have eaten at the hotel. Hell, I could even have paid a little extra and called for room service and really rested - but I'm too cheap (broke) for that, so realistically that wasn't an option. But taking that little jaunt to Freighthouse Square was a mistake I shouldn't have made. Then, when I awoke and found that I was overheated, I could have , instead of getting up to turn down the thermostat, just flipped back all the covers and cool off enough that way. When I did get up, and turned down the heat and noticed I was having trouble walking, I thought about sitting on the foot of the bed - but I didn't. I tried to tough it out. And I fell. So, this was my first experience with a fire department rescue, and I have to say that though it should have ...

I'm back from my weekend away. It started Friday night with a shower at midnight and going to sleep around 2 AM, and getting up at 6:15 AM. Argh! I had already packed and had DH put my bag in the car. I remembered my props for the Desperate Housewives skit: a twisted halo made from wrapping wire with stars on it, and a real rope noose. I was the narrator - the dead Mary Alice who had hanged herself. I left the house early enough to stop at the McD's drive-through for a much needed Egg McMuffin for breakfast. I got to the hotel and parked in the garage, even though I wasn't checked-in yet. Made sure at the front desk that they were okay with that. Went to the complimentary breakfast and sat with some sisters who got me some coffee to go with my McM. Then I went back down the three stairs - yes the complimentary breakfast was located on a raised area! If there was a ramp it was all the way on the other side, and too much trouble to find. Oh well - I dealt with it with a litt...

This is a little snippet I wrote a long, long, long time ago (circa 1983) regarding support groups. Heidi, newly diagnosed with probable MS, had never met anyone else with MS before she came in to do a project for school which entailed volunteering at the MS office. We were preparing the monthly newsletter for a bulk mailing. It was manual work - labeling and sorting and bundling. There were several of us gathered at a large table chatting away as we worked. Once there she met the three of us -- all with different personalities and levels of disability. The scooter one of us used didn't seem so frightening with a real person in it -- someone who was married, happily, and who talked about her family as she worked. The crutches another used lay unnoticed on the floor. Heidi would see beyond the disease to the individuals, and the MS became, somehow, less powerful. Later, when previewing a video from the chapter's library, she was struck by the fact that everyone in it had M...

I'm just trying to help her demographics. It's a really quick survey. Go ahead, just do it. "Hey, guys! Help a student out? It’ll just take a few minutes of your time, and you could win an Amazon gift card! My name is Lanna Lee Maheux-Quinn, and I am a Sociology and Mathematics student from the University of Southern Maine. I am conducting an anonymous survey about happiness and subjective well-being with adults 18 years or older. Would you help me spread the word? The survey is located here: http://www.gotthink.com/survey/ This anonymous, online survey is voluntary and will take 5-10 minutes to complete. It will be open until Thursday, March 26th, 2009. There are no known benefits to participating in this survey; nor are there any known risks for participating in this survey. As a special incentive, those who complete this survey have an opportunity to participate in a sweepstakes for one of two $25 Amazon.com gift certificates. Those who wish to participate, ...

After staying up most, well truth be told, all night, watching a Netf!ix movie and then playing Mahjongg on my laptop until my eyes were crossing, I finally went to bed at 8 AM. I know! You don't have to say it. But the craziest thing was that I had a really hard time walking and doing the getting ready for bed things I had to do. One of the reasons I stayed up so late was because DH lit a big fire and then went off to bed himself without saying anything to me. If he had checked with me, I would have told him I was just about ready for bed myself and not to build it. The thing is, when a really hot fire is burning in the wood stove, the fan needs to be on -- I had to stay up until the fire had burned down by at least half before I could safely turn off the blower. So I ended up falling asleep in my chair. When I woke up, I was able to walk (very carefully) well enough to turn off the wood stove, and make my way into the bedroom. Then the extreme weakness hit me. I still had to empt...

That's my big news for y'all. We had a lovely smattering of snowfall, and it was lovely indeed, mostly because I wasn't going out in it, and because it wasn't sticking to the streets around here. So I just sat here in my swivel glider and watched the birds at the feeder outside the window, and we didn't just have sparrows and chickadees today, we had a lovely pair of Steller's Jays that seemed grateful for the free food. We can't use our kitchen sink, and DH is taking his sweet time fixing it. It got clogged Saturday, not with coffee grounds, but with a sludge of oils from the coffee grounds we've washed down the drain for the last 18 years. First he plunged it; then he took the pipe apart to check out the clog; then he went to L0we's to buy a drain auger (a snake) yesterday; this evening he finally starts working on it and discovers that the hot water hose is leaking, so he just got back from L0we's with a replacement and is mumbling in the kitc...

Fingers poised over the keyboard not knowing what to type. Every thought that was in my head has decided it's time to play hide-and-go-seek. Funny, that. I am, for sure, going to sorority's Spring State Meeting, which is being held here in Tacoma (because my chapter is sponsoring it). At first I wasn't going to go because registration is $45, and as I've discussed before, money is tight. Then I was told that my registration is "being taken care of" so I have no choice but to go. It takes place the 13th - 15th of March, in less than two weeks. There's nothing planned for Friday, unless you're in the executive board or are a past president, and I am neither. It's Saturday that will be a full day, with registration starting at 7:30 AM, and the first meeting at 9:00. Our chapter is doing a pre-lunchtime "Desperate Housewives" stupid skit, and I have been recruited to be the Narrator, Mary Alice. My costume will be a noose (which DH will make ...

Well, I did it again. I finished another NaBloPoMo challenge, the first in November, and now February. I don't think I'll be doing this again for awhile. It's a pain in the ass trying to think of something to write about every day when you have no life. Okay, just kidding. I have a life; it's just a very quiet one. Not that there's anything wrong with that. I have tried several times to add a free hit counter to the blog. I have copied and pasted the html code to the bottom of my "edit html" page, and nothing ever shows up. If anyone knows what's going on, please leave a comment for the computer impaired. I'm going to read some blogs of my peeps, then read the paper. But first I have to convince DH that it's fucking freezing in here and time for him to build a roaring fire. Tout Suite! Good Night, TTYL (I'll be gone a couple days), and Be Well

I enjoyed these rules. I thought number six was especially good, but number ten explains it all. Ten Rules for Being a Human Being by Cherie Carter-Scott 1. You will receive a body. You may like it or hate it, but it's yours to keep for the entire period. 2. You will learn lessons. You are enrolled in a full-time informal school called, "life." 3. There are no mistakes, only lessons. Growth is a process of trial, error, and experimentation. The "failed" experiments are as much a part of the process as the experiments that ultimately "work." 4. Lessons are repeated until they are learned. A lesson will be presented to you in various forms until you have learned it. When you have learned it, you can go on to the next lesson. 5. Learning lessons does not end. There's no part of life that doesn't contain its lessons. If you're alive, that means there are still lessons to be learned. 6. "There" is no better a place than "h...

I look forward to Thursdays because of evening television. My guilty pleasures are Ugly Betty , and Grey's Anatomy , and Private Practice -- though to be completely honest with you I prefer E.R. to P.P., but since they changed the schedule this season to have the two compete, E.R. wins because this is the final season. I realize I can watch some of the shows on HULU, or ABC.com, and I have, once a month on Sorority night which always falls on a Thursday, but I prefer to see them on the television. ************************* Boy, was I surprised to see that the DVD I watched of This American Life was produced in 2006! I can't believe it's been that long since it went on TV! I thought it was just last year. Time flies when you have no life! Now I have to check to see if there are more seasons available through Netflix. I really like Ira Glass's view of the world. He has such compelling subject matter. The first episode was about a guy and his pet bull, Chance, who was ...

So it's the beginning of Lent. Ash Wednesday. Growing up Catholic, I always went to mass on this day, and after mass the priest would put a little cross of blessed ash on our forehead, and being the good catholic girl that I was, I would not wash it off and spend the day walking around with a smudge on my face. I was proud of that smudge. I wore it with devout pride. Those days are so long since gone. The more recent smudges I've had on my forehead, were also part of a religious ritual, having been placed there by Saints from India - Shree Maa and Swami Satyananda , Sri Karunamayi, and another whose name I always forget . The little red dot on the third eye that comes with their blessing. Different faiths, similar rituals. I didn't stick with that practise either, though it makes more sense to DH. I'm not going to write about my beliefs and dis-beliefs or lack of beliefs, I was just thinking that today is Ash Wednesday, the beginning of the season called Lent. Except th...

One of the things I like about sleeping in late is waking up Saturday mornings and listening to the radio. I listen to KUOW, the station that carries A Prairie Home Companion, Car Talk, Wait, Wait, Don't Tell Me , and my favorite, This American Life. Last year, Ira Glass started a television version of This American Life, and I was really disappointed that it was on a pay cable station that I don't receive. So you can imagine how pleased I was today when I opened my Netflix and found the DVD of the entire first season. Guess what I'll be watching tonight, and probably tomorrow night too?

The first of several magazines I ordered a couple of weeks ago arrived today, Women's Day , and the thought occurred to me "When am I going to have the time to read this and three more magazines? I have enough reading to do with the newspaper Friday-Monday, and the blogs I try to keep up with. What was I thinking? I was thinking that "Gee this is such a good price! At least 60% less than I've ever paid for a subscription before ... that I just can't pass this up!" I hope I enjoy them at least 40% of the time, because if not you can stamp STUPID on my forehead.