Wednesday, June 29, 2005

Stuck Indoors?

So it's 85 degrees in the shade, and I'm stuck indoors. I literally cannot go for even a short walk.

Increased MS symptoms cling like a hangover. My ankles feel squishy and "wet," and I have a constant "headache" starting at the back of my neck and shoulders that tingles and feels tight. My hands also tingle and feel swollen although they simply are not, and my clumsiness now borders on the dangerous. I begin to avoid stairs. I am paying for my little trip to the river with Ellie on Monday. And I still must work each night. Every now and then I whine "I'm tired" to no one at all.

I can even feel the muscle around my left eye, tracing a circle, one that I didn't even know existed before the first MS exacerbation, some ten or so years ago. I resist the urge to ask Husband RJ to check the date of the first attack. He's the keeper of the dates and the facts surrounding all major events. I'm terrible about such stuff.

The first year, especially the first summer after the first attack, I was trapped inside. But by then I was already learning to fight the blues, because I'd had a serious bout of clinical depression as a young wife. It was important then not to succumb to inactivity. Seemed to me it was more important once I learned about MS.

Early on I would sit at home feeling sorry for myself. Now I just start with the basics.

First, let in the light. Open the shades! If the heat will creep in, then shut the shades on the sunlit side and open the ones on the northward. Make yourself at home in the brighter rooms. Move your activities there.

Keep clean! Shower and dress and tidy the house. Prepare for activity. If the place is a pigsty from inactivity, then you have a job now: clean the house. Set a schedule, say, of no more than two hours of work, then reward yourself accordingly. A nice nap is even nicer when the house is clean on awakening. And the cleanliness is for someone important. You.

Eat for the summer! I met a friend at Montana Mills this morning, who told me she ate cheese and cherries last night. And we both purchased bread that would keep us all week, especially if we freeze some of it. Before the heat wave, I had boiled some eggs and macaroni. Now there's salad fixings for the hot days. And cold fruit in the fridge and canned fruit in the pantry. I've learned to buy small zucchinis and baby carrots for snacks and cold lunches. Tuna, cottage cheese and yoghurt have taken over my diet. My family shreds lettuce by the head to store in containers in the fridge. A couple types of bread, say pita and high fiber Lite from Weis Market, are waiting year round.

Keep a cool car. Shortly after the first exacerbation, we purchased a used Geo Tracker. I need the height, because while I could fall into a lower car, someone would have to haul me out of it. No independence in that. Getting in and out of a small SUV is a breeze, and it's good on gas, and it was inexpensive enough that we could afford to install air conditioning. On top of that, we use sunshades to keep out the sun. MammaDog M got me Marvin the Martian sunshades to pop onto the side windows, too. They are narrower, perfect for the door windows. She found them on the Internet.

Finally, know your limit. Absolutely do not overplan. People ask me where I find time for blogging and video games. I simply do not overplan. For example, I never, ever shop for more than two hours. Ever. Even a three hour shopping excursion is interrupted with a lovely sit-down lunch or snack for an hour. Off my feet, resting. If I don't have what I planned to buy after two full hours, tough. I'm done and I go home to rest. Every now and then I have time left over. It's rare, but I do sometimes. That time is for me, me, me!

More on daily routines soon. Work in an hour.

Little Pond

Monday, June 27, 2005

Heat Wave!! Dirt, dust and pollen alert!!

Oh boy. It's suffocatingly hot and humid. No walks this afternoon. All this weekend I wore my Cooldana, the one that the Copaxone people sent me. Because I filled out a questionnaire, I think.

And I wore hats. And avoided the sun. And gave up and came into the air-conditioned house. It makes me shudder to imagine the energy bill that will come from NYSEG shortly.

Very little cleaning in this weather. First off, I still have to work tonight. Then an excruciating walk very early this morning left me soaked in sweat. So Blogging it is. With some Dasani bottled water at my elbow. And Ellie flattened out on the sofa. Ignoring even little snacks. So I vaccuumed the living room, fwoomphed the comforters upstairs, and wiped down the bathtub and sink. The kitchen was too warm, so I left it for tomorrow.

What to do about the heat, humidity and allergies this summer? Take care of the allergies first. That means vaccuuming often. We have an Oreck XL with special filter bags and I do this without glasses. In other words, don't make it a big song and dance production. No glasses means I don't see all the dirt, but I see enough to make the place look clean. Glasses are fine if guests are coming, and the place needs to be spotless. Without them, I clean what would bother just Husband RJ and me. I see and clean the cat and human hair and the cigarette ash and any leftover spills. Things get picked up and put away. For me, confusion leads to accidents, and is not given full sway.

So a schedule is necessary, too. Drugs taken on time despite all my whining. Meals on time and in the proper proportions. Every serving of fruits and vegetables is counted and heavy proteins kept to a minimum. Lots of grains and very little that actually needs cooking.

Meds, visit with Husband RJ, breakfast, walk, cleaning, computer then nap. Then visit with Husband RJ (who's home for lunch), cool shower, walk, computer, cleaning and rest before work, usually a video game or blogging or both. After work, a sip of wine spritzer, visit with Husband RJ, then bed. Workdays we are two ships that pass each other three times.

OTC allergy meds are minimal. Antihistamine, pain killer, antacid when needed. Gotta rotate the pain killers. This week it's acetaminophen, last week it was aspirin. Only when needed, not regularly, but that still means every day. Today I'm trying to wear bifocal contact lenses to work. It's not always good for me, especially if there is cut-and-paste, or strip-in work. Otherwise, they are wonderful: such a relief to get the glasses off my face. Still, they are expensive, more so than bifocal glasses. And high maintainance because I need eye drops to keep them wet in climate-controlled spaces.

So, allergies kept under control, homespace (fairly) clean, discomfort kept minimal. This means watching all chemicals that contact my skin, eyes and lungs. Sensitive-skin versions of hair and skin care, and anything hypoallergenic in cosmetics. Not much for makeup and jewelry. Naturally, I am sensitive to gold and silver jewelry. Household cleaners are mostly disposable wipes, and floors and carpets are cleaned with oil soaps.

Basically I live in a little purgatory of hypoallergenic, sensitive-skin versions of just about anything I can get. Goes for food, too. But that's a whole other post. At least.

What I really want to know: Does everyone with an Immunological Disorder have to live like this? Is it common to be so full of allergies that I'm practically living like the Boy in the Bubble? Can't take more allergy meds, because they send my blood pressure soaring. The allergy shots only work while I taking them. As soon as I stop, I suffer. It's easier to just take antihistamines. Besides, I got tired of having a hugely swollen arm all the time.

Ideas, anyone?

Little Pond

Sunday, June 26, 2005

Dog Day in Golden Glow

Tricks times three. Went to the Golden Glow to visit with my other dogs. Go to Pat's Pond to see the rest of the visit.

Little PondPosted by Hello

Friday, June 24, 2005

The GoogleAds are coming

That is to say, we will experiment with advertising on our secondary sites, of which MS Companion is one. Because Pats Pond is essentially no more than a personal blog, all the advertising has been for blogging. Which is okay by me, I guess.

The MS Companion however should attract more specialized advertising. I would even point up the ads, except they apparently cycle around. Hey, if they don't work, I will remove them. It's not like they will make me rich, anyway. I want them to offer stuff that's useful to MS patients and those with related disabilities.

Note especially the Google bar. Your portal to the wonderful world of, well, just about everything. Husband RJ and I used to marvel at how our outlook on the world changed as soon as we visited the Net. It's more than the difference between a house with Television and one without. No question goes unanswered now. No topic remains dark to us. We know all and see all, practically. Can't live without it.

So go ahead, Google something. But no visiting questionable sites, you hear? The Net is a vice in and of itself, without piling more on top of it. Goes for gambling, too. (Didn't know all that was available to you? You have no idea! Can't think of anything not available on the Net.) Enjoy.

Little Pond

Wednesday, June 22, 2005


Cooling scarves lead to Chillows lead to Fwoomph? So what is Fwoomph?

Well, there are fwoomphs and there are fwaps:

If you own pillows you already know how to fwap. Fwapping is the sound a pillow makes when I fluff it. Got it? So what's a fwoomph? This one you may not recognize. A fwoomph is the sound a comforter makes inside its cover when I shake it back into shape.

A house full of pets needs comforter covers, pillow shams and afghans to drape over the sofa and chairs. Or else it needs highly disciplined pets that aren't allowed on the furniture. That last sound like your house? Doesn't sound like ours either.

The extra bonus in our house is the ease of tidying, not just the ease of cleaning and laundering. To make the bed, I simply fwoomph the comforter and fwap the pillows. I usually keep two cheap pillows in shams to finish the job. Downstairs I launder the afghans. No clever noises to that.

We use hugely stuffed, feather comforters in the winter and feather blankets (also inside a cover) in the summer. and when we didn't have air conditioning, we used Vellux blankets that are oh, so easily laundered. Unfortunately, we lent the Vellux blanket to MammaDog, who learned that Granddog Ellie gently chews it during the night. Rather like thumb-sucking. She didn't have the heart to discipline Ellie, so we no longer have the blanket. But the Vellux blanket was perfect for the hot nights, as I remember.

Some may not make the connection between all this and Multiple Sclerosis.

Many of us with immunological disorders also experience more than our share of allergies. I do, and I compensate by keeping our place tidy and vacuumed (filtered air conditioning helps), more, I guess, than the average person. Or maybe not. My mother kept our house spotless when I was a child. I think she was an A-Type personality, though. My housekeeping does not begin to measure up to my memory of hers.

Still, I do what I can. I scrub floors and carpets with machines, vacuum frequently and dust whenever shame overtakes me. When I can no longer stand the cats, I take an antihistamine and brush out the extra fur (with a cat-brush, not an antihistamine). Granddog is shorthaired, thank the Lord. I use premoistened wipes to clean the puppy-nose marks off the windows and to polish the furniture. And I wear gloves. NOT white gloves. Place isn't that clean. Disposable plastic gloves to keep the fluids off me. More on allergies later.

So fwoomphs and fwaps are the order each morning. Laundering and vacuuming a few times a week. And deep cleaning when I can no longer stand the ground-in dirt or stains. No more. No real schedule, except that dictated by my relapsing-remitting MS. Although I am inclined to wait until Granddog goes back to Golden Glow with Mamma before I bring out the heavy equipment. It makes my heart ache to see her cower.

If this sounds easier than what you do, go for the covers. If you have a better way, clue me in. I am always open to good suggestions.

Little Pond

Tuesday, June 21, 2005

Forgot my Shot, Again!

My blogging has become all consuming. I spend hours at the keyboard now. When I am away, I find things that should be linked to one blog or another. My purse is full of little slips of paper covered with links and notes.

But lately the worst of if is that I am forgetting my Copaxone. Yeah, I understand that it's nasty to shoot myself every day, so it's like hysterical amnesia. But this is Copaxone. It may be the only reason I am well enough to even blog!

Fortunately I have the MSCompanion. When I get blogging for MS readers, I remember my drugs, and what I need to remember, to say, to ask.

So let's ask: What do you tend to forget to take or do (or not do)? And what reminds you?

Maybe we can start to share some of our experiences.

Little Pond

Saturday, June 18, 2005

When the going get tough, the tough do dishes!

Bits of wisdom from Winds of Change, where every Saturday is Good News Saturday. This reflects my attitude towards "making progress" in just about anything. Wouldn't hurt to scroll up to the Sufi wisdom about the Fox and the Tiger, either. We know a few like the foolish man in the story, and not enough Tigers and Foxes...

Little Pond

Friday, June 17, 2005

Chill Out in Bed

While I was composing the last post, I knew we would need an immediate followup with The Chillow. This is aimed at anyone who loses sleep due to the heat. I don't mean uncomfortable, I mean fearful, drenching night sweats. This includes menopausal and hormone-treated women.

Anyone who has ever been wakened by hot sweats (regardless of time of year or temperature) and can't get back to sleep. Anyone who responds to the sweats by removing bedclothes and even nightclothes. Anyone like me who must keep their spine cool, especially the back of the neck and head. Any of these people will find a Chillow to be an excellent investment. I've been all of these people myself and the Chillow has been a rest-saver.

I tried the cooling scarf (see below) in bed. It certainly served its purpose, but the dampness in bed was just plain nasty. I hoped the Chillow was drier, and I was desperate enough to try.

It worked!

It seems to work on the same principle as the personal cooling devices, such as scarves and vests, but there is almost no sensation of dampness. I usually keep it on the underside of the pillow, and flip it when I need it. I use two pillowcases over it, and it still works wonders. And I can cover myself with a blanket. Perfect for those awful nights when the hot sweats used to make me kick off the covers, only to wake later shivering with the chills.

Check it out at the Chillow Store. But they are becoming more and more available in the bed- and linen-type specialty stores and departments. They are everywhere in the catalogs and Internet shops, so just Google "Chillow" and go for your best price.

Follow their instructions to the letter. If you've ever used a personal cooling device, you are already aware of the possible wet mess. I assure you that mine has never leaked (gotta keep it from the cats and Granddog Ellie!) once the stopper has been sealed. I can tell some silly stories about flattening out the wrinkles, though. Go for it.

Little Pond

Thursday, June 16, 2005

Summer's Coming

With these two words I'll bet I am conjuring up so many conflicting emotions in so many. Husband RJ often talks about how he dreaded summer as a overweight teen. He covered up and was miserable in the heat. I loved the summers in Central Massachusetts, as winters often left me miserable and unable to ever get warm.

While winter is now my ally, I must carefully prepare for summer. Every summer brings an exacerbation, a relapse into a Multiple Sclerosis attack. I hide in my air-conditioned home, and venture out less and less.

But this year I have cooling scarves! Also called Cooldanas. A simple strip of cotton, stitched into a tube and filled with watering crystals. The same sort of crystals used to gradually water plants over, say, a long vacation. It works by slowly sweating onto my skin. The artificial perspiration evaporates, creating a cooling effect. It actually cuts down on my real sweating. I need them especially indoors, wherever there is no airconditioning. Because MS centers on the spine, the scarf on my neck acts to calm my fear, of heat on my backbone.

I am told that WalMart now carries cooling scarves. This weekend I will investigate.

Meantime, you can go to Safety Central or Cooldana or Google cooling scarf or personal cooling system.

Little Pond

Wednesday, June 15, 2005

Pearls of Wisdom

Let the Blogrolling begin! Our first commenter is also our first contributor, in a way. A little back and forth, and we may have made a new friend in PK.

Pearls and Dreams is our first link outside my other blogs. MG is also neuromuscular, and the very first link I clicked is relevant to those of us who must use cortisones for flareups.

BTW, this site is arranged by links. I opened to what is essentially a table of contents, a very easy to use site. And the animal pics are icing on the cake.

Thanks PK. I expect you'll hear more from us soon.

Little Pond

Tuesday, June 14, 2005

First Things First

Let me be clear on this. Nothing in this blog will ever publish contrary to a doctor's recommendation. If the medical community doesn't know the answer, the rest of us can't gripe. Everything medicine has to offer is at our service. Use it. Discuss it, with your medical caregiver if need be, but use it. If you can't discuss it with him or her, get a second opinion!

That said, keep in mind that the MSer is the one who deals with disability day after day. A person in charge of his or her body and future is actually the neurologist's best weapon against the disease. I can assure you that your doctor is learning from each and every one of your visits. That's why they call it a "practice."

An interesting thing happened to me last month. I've been on Detrol for a few years. It helps, but the constipation is debilitating, causing constant bleeding. I follow my doctor's recommendation, taking fiber and using stool softeners, but with little effect. During a gynecological visit, my nurse practitioner prescribed Sanctura. It seems to fight incontinence in a different way. It was instant relief from constipation, but was a lot less effective at first.

I ran through the samples. Now I needed to make a decision. Do I return to Detrol and constipation, or do I give Sactura more time? I submitted the refill to Geroulds Pharmacy. It is standard procedure at Geroulds to offer a printout on any new drugs, or whenever a patient has new questions. The first thing that caught my eye was "Take one hour before or two hours after a meal." Huh? Didn't catch that one before.

Instant relief and instant results. Now I am a happily unconstipated person. My eating schedule, however, is in tatters. Not a small problem for a person subject to hypoglycemia. But First Things First.

The point. Drugs must be properly handled and taken to be effective. This sounds simple, but it isn't easy. There are basic rules to follow to make the drugs work. Read the packet insert carefully, and ask questions. Pharmacists are much more readily available to us than neurologists, who we rarely see, at best.

Here is an excellent recap of the basic rules. Read them, set them aside, then read them again. We have a catastrophic illness. It will take a miracle to cure us. Before we have that miracle, we have our brains, our knowledge of our own bodies, our willpower and our common sense. Use them.

BTW, when it comes to incontinence, you'll want to add sanitary protection to that list. Oh, and a sense of humor. Cultivate a brooooaaad sense of humor. It helps the worse-case scenario when it happens. Do it for your own ego, and to put those around you at ease. We can laugh about it or we can cry about it. I'd much rather laugh, and so would my coworkers. Works for us, anyway.

More about that later. Meantime, visit with one of my favorite links.

Little Pond

Monday, June 13, 2005

You don't have to be polite!

At this point in my new blogging career, I am a little uncomfortable with my frequent mentions of needing rest, needing to escape the heat, needing to accommodate my disability.

Perhaps my readers don't even notice. Perhaps they are convinced I am a complaining crybaby. Yeah, it's hot. So what? Buck up!

Well, I may be a crybaby, and I am certainly a complainer, but I don't think many people could buck up the way I do. And I'll tell you why.

Multiple Sclerosis may be a killer, but it's a slow one. I'm more likely to die in local Elmira City traffic than I am through MS. I sure as heck will die faster through the help of Black Jack Kevorkian, who's killed many more MSers than would have died naturally, than I will through this disease. And simple depression must kill more MSer than the actual condition itself.

Point is, for many MSers the diagnosis is their signal to stop fighting. Oh well, is that what this is all about? Thank God there really is something wrong with me! Let's look into disability benefits and relax.

Now, now. Easy, there. I know not every MSer is a goldbrick. I hope not many are. But a person with MS hears about everyone's' relative who has it. I hear stories that make me physically ill about people who frankly stopped living after their diagnosis, even though their relapsing/remitting MS does go into remission.

If you have MS and are confined to a wheelchair, or God forbid, more serious life support, Lord bless you. This site is may not be for you. Or anyone with severe disability brought on by the condition has more to handle than I can help.

If you've just been diagnosed, you are sad, sick, furious, whatever. This site is not for you--yet. Give yourself time. Read the Kubler-Ross works on death and substitute MS everywhere you read Death. You've got some serious grieving to do over the healthy person you once were. When it starts to feel like you are losing valuable time, and you are tired of the whole disability thing, come back and tell us about.

If you are done grieving and have resumed living, we need to talk. You need to contribute. I want your help with this site.

Don't be polite. Dig in. Don't mind your manners or your writing. That's what editing is for. I am an editor, a writer who can't keep her opinion to herself. That's all an editor is. Willing to correct what I see as mistakes. It's my site, so it's my right. If you disagree, start your own site.

It starts with dialog. You comment, I comment back, and so on. That's called a thread in blogging. If you have good stuff, we start posting. If you have a lot of good stuff, we open a new site with links back and forth.

Everyone is invited. MSers, their family and friends. Coworkers. Fellow worshippers. Businesspersons. But the most important contributions will come from anyone who has conquered, even the least little bit, any aspect of living that is affected by Multiple Sclerosis.

Everyone is invited. If no one comes, then I will have my own party. No pity allowed, for me, anyway.

I can laugh about it, or I can cry about it. Believe me, I'd much rather laugh.

Little Pond