Friday, April 28, 2006

My Soma is Okay, I Guess

What I mean to say (correct me if my word usage is wrong) is that non-medically speaking, I am quite well. I've knocked out nearly all the unnecessary drugs again, so my side effects are minimal. Because I am actively monitoring myself, it is easier to remember to take the rest on schedule. It's nearly time to reset the others; that is, to try to drop the menopause herb, Black Cohosh. There are those who insist that herbs don't have any real effect.

Poppycock. (I don't take that one!) Anyone in the middle of menopause can tell if a drug is helping or not. Since my BabySister is in town tomorrow, I daren't stop the Cohosh. Don't need night sweats just yet. It would put a crimp in visits with BabySister, MammaDog and VeggieGirl, and GolferGirl.

Yes, we have quite a schedule lined up. The Glass Works and Market Street will be a must. Not to mention the local shops and art fairs, since BabySister is from the Boston area. We offer a unique angle on Americana, not to mention lower prices. Wine Country beckons us, too, although to be honest, we mature ladies drink less than we used to. And just visits, visits, visits.

All kept in discrete, small doses, with plenty of rest at the Holiday Inn between. Not so fancy we have to totally behave ourselves, and luxurious enough that it will become our Weekend headquarters. We like to give Husband RJ the run of the Friendly House in the Little Pond while we kick up our collective heels, coming and going at all hours, and giggling and goofing like a bunch of high schoolers.

I'll keep you posted.

Little Pond

Tuesday, April 18, 2006

Two strokes of Luck!

I did it! Made it through the entire Easter service, incense and all. The first time in years. A decision I made last week may have helped.

Friday I stopped using the Advair Discus. It may have actually been Thursday night when I finally got fed up with coughing and started to eliminate the possibilities.

It was easy to choose Advair as the first to go: every time I used it, it seemed to cause me to cough. Inhaling a fine dust should make me cough, I think. Or, it should be soothing, like the mist from the Albuterol.

It it now Monday, and the coughing has indeed subsided. On the Advair, even the slightest touch near my throat would make me cough. A dry, tickling cough that was never productive.

Tonight will tell the tale. A full night's work usually includes sneezing and coughing, especially once the presses start. Everyone erupts when the presses have been running a while, but I usually am the first to react. This is an old building with very poor ventilation. Our workspace is covered in the fine black dust attributable to printers' ink.

I've already made it through Monday night, but there was no preprint to cloud the air by 9PM. Also, I may need some time to heal. And what am I going to do with 2 months' worth of Advair? The copay alone is $50.00!

Little Pond

Saturday, April 15, 2006

For the Pet Lover in Us

Thanks to new friend Shelly, who visited us at the previous link below: Posted in its entirety.

Letter to My Pets:

When I say to move, it means to go someplace else, not to switch positions with each other so there are still two of you in my way.

The dishes with the paw print are yours and contain your food. All other dishes are mine and contain my food.

Please note that placing your paw print in the middle of MY plate and food does not stake a claim making it YOUR plate and food.

The stairway was not designed by NASCAR and is not a racetrack. Beating me to the bottom is not the object. Tripping me doesn't help in your quest to reach the bottom first, because I fall faster than you can run.

I cannot buy anything bigger than a king sized bed. I am very sorry about this. Do not think that I will continue sleeping on the couch to ensure your comfort. Dogs and cats actually curl up in a ball then they sleep. It is not necessary to sleep perpendicular to one another, stretched out to the fullest extent possible. I also know that sticking tails straight out and having tongues hanging out the other end to maximize space is nothing but sarcasm.

For the last time, there is not a secret exit from the bathroom. If by some miracle I beat you there and manage to Get the door shut, it is not necessary to claw, whine, meow, try to turn the knob, or get your paw under the edge of the door and try to pull it open. I must exit through the same door I entered. Honest. Also, I have been using the bathroom by myself for quite some time --canine or feline attendance is not mandatory.

I can't stress this one enough -- kiss me, THEN go smell the other dog's/cat's behind.

To pacify you, my dear companions, I have posted theFollowing notice on our front door:

Rules for Non-Pet Owners Who Visit and then Complain About Our Pets:

1. The pets live here. You don't.
2. If you don't want their hair on your clothes, stay off the furniture. (That's why it's call "fur"niture.)
3. To you, our pets are just animals. To us, they are an adopted son/daughter who happens to be hairy, walks on all fours and doesn't speak clearly.
4. Dogs and cats are better than kids because:---- they don't ask for money all the time---- they are easier to train---- they usually come when called---- they don't hang out with drug-using friends---- they don't need a gazillion dollars for a college education.

Thanks, Shelly, especially for the link to MSMuSings. It's the clearinghouse I wish I could have found in the early days after my diagnosis. My father offered me money for a decent computer back then, but I didn't know much about the Internet, and was not very intrepid or adventurous. Like a dummy, I passed, thinking I would have to work from home to make it worth his while. And what would I do? Took ten years to come up with a good answer.


Little Pond

Saturday, April 01, 2006

A Very Looong Update

Snowdrops on the southern face of the levee facing the Chemung River, March 2006.

When I was first diagnosed, I was advised to consider masking the disease behind (vaguely) acute conditions. After a very stressful period of public denial, I chose to make the diagnosis public.

The turning point came when an acquaintance blurted out that she was afraid I had HIV. We had been exposed to a few coworkers who died of AIDS, so it was a reasonable fear. There weren’t enough prayers in the word to protect them; all shared the same lying philanderer.

I went very, very public. Not exactly "MS Woman!"--but identifiable, nonetheless.

So how does the reader benefit? After all, somebody better benefit from this site. It’s not making me any richer, younger or brighter. Here are things I experience and share, in hopes of assisting others:

Medical information and products catch my interest more than they might for a healthy person. For instance, I introduced many to the
Chillow. It works wonders for night sweats experienced during menopause and by people with AIDS, as well as for MSers who need to cool the back of the neck. I use mine year round.

Again heat is my enemy. This past year I’ve gotten less use from personal cooling items like the
Cooldana. However, a whole new summer is on the way. Another thing: I avoid trauma like the devil. I even drive much more defensibly than most people. And how many MSers know they should not use Echinacea or other herbs that enhance the immunological system?

I live with chronic fatigue. I sleep six hours at night and catch another one to two at midday: more on the weekend, when I don’t have to go to work. What else could I do to conserve my mental and physical energy? I was initially advised to try to sleep up to 10 hours per day in the beginning. What a waste! It sounded lovely, but proved totally impractical. Sleep ten hours and work eight? That leaves six for cleaning the house and groceries and… Not enough--never enough.

Depression is ever present and often requires medical control. This is cyclical, and I’ve learned to treat it on a day-to-day basis. My daily walks are in response to the need for sunlight and exercise. I also admit as much light as possible through the windows of my home. On top of that, we replaced all our light bulbs with fuller-spectrum ones. And I expanded my personal circle through the Internet: an absolutely necessity for my cognition and emotion. My blogs are full of references and links to these Cyber-relatives.

My body is not worthy of my trust in public. Incontinent supplies and antispasmodic drugs are a must most of the time. Lately, though, I’ve given up on the
Detrol; there are too many side effects and too little benefit. If anyone is interested, I have been testing incontinent supplies by the boxful through HDIS. It’s costly, but such a comfort to experience for myself the wide variety of pads and guards that are out there. (If it’s too embarrassing to comment on this, readers can email me through my profile on the sidebar. I will be happy to reply to any email with HDIS in the subject line.)

MSers experience mood swings and weight gain/loss somewhat beyond our control. So maybe I’ll settle for a perfect 14, rather than a 10. Or maybe not so perfect either. I’m practically a hobbyist in regards to healthful eating. This is because
Hypoglycemia is another of my constant companions. And some wicked food allergies, to boot.

We have drug or chemical therapy that may be painful and/or debilitating. How do I motivate myself for the needle, and to remember all the pills? The inhalers? I don’t always.
I’m not Superwoman.

Families and friends misinterpret our good days, as well as our bad days. It seems no one I know has any patience for me when I’m moody or sad. That’s both good and bad. Sometimes I wish I could afford regular counseling. When I was acutely ill with clinical depression in my thirties, I was suicidal and it showed. No one begrudged me the time or money (almost!) for counseling then. When I could no longer afford it, my psychiatrist recommended
“Recovery” as a proactive way to work out problems.

Relapsing-remitting MSers are always on the lookout for returning symptoms. However, even our spouses want us “to give it a rest.” But the same people scold when we don’t notice our own relapses. Daily exercise is a must for pointing up relapses. And I start everyday with a crossword, and try to fit in a few Sudokus each week. And to hell with everyone’s impression of my progress, or lack thereof, including families and friends.

So in the end, the Internet benefits from my “digital diarrhea.” The Internet is my family and my friends. And you are real, not just virtual.
Karen and Jen and Darlene and Peggy and Sissy and Norma and Pam are with me constantly, through email and snail-mail, and through blog-visits. My life has expanded exponentially in this last year. Thank you and God bless you all.


Little PondPosted by Picasa