It Finally Happened #gilenya #multiplesclerosis

Yes, I know I said the party was over, and truth be told there's nothing left here on this blog but the confetti on the floor and a bunch of empty solo cups to pick up.

But for the entire duration of this blog, which has been about my experience in the TRANSFORMS clinical trial for the MS drug Gilenya (fingolimod, FTY720), I never had a relapse.

I guess this blog was my lucky rabbit's foot. I should have kept it going. The minute I called it quits (and yes, I realize it's coincidental, but the irony amuses me) I have a bona fide relapse.

For the past week or two I have been suffering crushing fatigue. No all-nighter in my 20's could ever have topped this. A feeling like Horton is sitting square on the center of my chest.

Then, when I'm able to shove him off my chest and become vertical, I realize karma thinks I'd look faaaaaabbulous in a lead suit.

Alanis Morissette left a verse out... "like gaining weight, when your legs don't want to move". I'm serious. I was stuck in bed part of that time taking comfort in snacks because they made me feel better. Thank God the worst of it was over after only a couple weeks or they'd be cutting a hole in the wall to get me out of this joint.

I called my neuro when I finally decided it wasn't just hypochondria getting the better of me (is there an opposite of hypochondria because I think I have that now. Whoops, no, there I go begin a hypochondriac so I guess I'm good).

I went to have a checkup at the clinical trial center and they did the EDSS on me. I had increased weakness in arms and legs, numbness in parts of my forearms and calves, and for the first time EVER I couldn't complete the 500 meter walk.

They always made me do 24 laps of the study center hallway which measures out to be a total distance of 500 meters. I have always completed it (one time in just under 10 minutes), and always unaided.

Yesterday I asked for my cane after 2 laps and had to cry "UNCLE!" after 18 total laps. The study coordinator said "wow! something really is going on, isn't it!"

Duh!

So I will re-end this here now that there is an ending and "Girl Has Relapse".

I'm not gone, however. My new obsession, besides writing for www.healthline.com, is my site, www.partnersinresearch.org, where I'm hoping to educated people who are curious about clinical trials for MS what it's like from a patient point of view.

Also, stay tuned for an update on where I'll be blogging just any old stuff. I need a place to vent and this blog is too confining. There's more to me than my MS, after all. :)

Peace out.

Summertime - Too Hot To Handle

I'm talking about heat sensitivity and how it affects MS, not me in a bikini–I'm about 30 years past that expiration date.

Read my latest article on the subject over at www.Healthline.com. To get my own personal view on the matter, keep reading here first...

It was early on in my MS career (because that's how I think of it now, due to the opportunities which have come my way since diagnosis) that I had my battle with summer.

Summer won. That was the year the family drove from Florida to Georgia to see relatives who lived in the middle of Death Valley. Yeah, I know my geography is all wrong, but you could never have convinced me of that.

We were outside in the middle of July with not a single tree in sight. Sitting by a pool and broiling in sunshine. The mercury was pegging 100 degrees. Not knowing there would be swimming involved, I wasn't dressed for the occasion. I was wearing jeans and a T-shirt and sitting at the little round glass table with everyone else. I don't even recall an umbrella. I just remember the unbearable heat.

It grew hotter and hotter, but I never broke a sweat. That reminds me of the back-handed compliment/joke my dad used to tell, "You don't sweat much for a fat girl." Had I been able to sweat, I may have cooled off, but instead the heat just drove my core temperature through the roof.

I got up and staggered to the car, parked about twenty feet away and crawled inside to start up the A/C. Even with it blasting in my face, it seemed I couldn't cool down. By this time both legs were numb and weak. I was experiencing a fatigue like none before. I felt like I weighed a thousand pounds and it took everything I had to even lift my head off the back of the seat to turn and call out the window for someone to help.

That was my first–and most dramatic–encounter with heat sensitivity. After that weekend, when we returned to Florida, I ended up being admitted to the hospital for three days of IV Solumedrol to halt a new MS attack. My neuro at the time claimed it was only coincidental that I had such an intense reaction to the heat and then had a relapse. I've always wondered if maybe it wasn't the reason.

So this week's article about heat sensitivity is something I know most of us with MS are familiar with. If you have MS and don't have an issue with the heat, I'm assuming you are reading this at either the north or south pole, in which case cold is probably more of an issue.

If you are anywhere in between, be sure to read along for some great pointers and links to tools that could make summertime more bearable for you.

Because they don't have room for all the wonderful content I would love to share with you over at Healthline.com, I am going to continue blogging my "leftovers" so you can get a veritable  smorgasbord of useful info.

This Week's Leftovers (in no particular order)...
In an interview with Anne P., who is from Georgia and has had MS for 14 years now, we learn about her own experience with the heat. She also has quite a few good tips on how to deal with it.

"[I use a] cooling towel. I love the Frogg Toggs towels and neck wraps - they are amazing. Other than that I always have ice water at the ready and do my level best not to be farther than a comfortable walk to an air conditioned space - even if it's my car!," Anne advises, "Don't push it. Stop, rest and cool down a lot, even if you think you don't need to. It is better to be safe than sorry!"


When asked how heat sensitivity has made a difference in her life, Anne says "My days of pool parties and outdoor festivals are over. Really, what I miss the absolute most is being able to volunteer at booths for a local charity that I love."

Thanks, Anne!

Corrina Steiger, President of the North Florida Chapter of the NMSS provided a lot of valuable tips on dealing with the heat. She also mentioned that the NMSS has resources to help people in need of assistance obtaining cooling vests or paying high cooling bills. "For more information on how we can help, contact the Society in your area by calling 800-344-4867.”

Thanks, Corrina!

The interview I had with Dr. Scott Silliman was conducted over the phone and I did my best to type and listen and comprehend all at once, but I probably failed him miserably. He had so much great info to share.

"I usually see [heat sensitivity] most in people with spinal cord MS and in those with optic neuritis. I see it less in patients with a cerebral form of MS." Silliman said, "This is because there is less redundancy of nerve pathways in the spinal cord and also in the optic nerve, so there is less ability to compensate for nerves that aren’t working.”


It was an honor to have the pleasure of interviewing Dr. Silliman, as he is my own personal neurologist and was the lead investigator of the TRANSFORMS trial in which I participated.


Thanks, Dr. Silliman!

Kim Gillespie, creator of the TaTa Coolerz, has a different approach with how to combat the heat, for women anyway. She was away on a camping trip over Memorial Day Weekend (happy anniversary, Kim) when she got the idea for a cooling device that could be discreetly worn to cool you off without everyone aware you are suffering. The TaTa Coolerz are worn tucked inside a woman's bra, providing cool comfort to a sensitive area while bringing down your core temperature.

"They go right in the freezer, then you take them out and squish them up to get them malleable. Then, when you tuck them in your bra, they conform to your shape. We've had them last as long as two hours, fifteen minutes in the Florida sun."

"They are designed after high-end fashion push-up bras, and they are durable and reusable," said Gillespie. From her facebook page, "For the entire month of May TaTa Coolerz is honoring Mom. Please use code: Mom2013 to receive a 20% discount on your purchase."

Thanks Kim, for giving us another alternative to fighting this intolerable heat!

Summer doesn't have to be dreaded and unbearable. We can once again venture back out into nature to take part in fun activities like pool parties or picnics as long as we approach it with common sense and a few tools.

That's it for this week.


If I don't see you before, I'll see you next week. Until then, try to stay cool.

Deciphering the Smoke Signals: New Study Reveals Cigarette Smoking May Speed MS Progression

My second article is hot off the virtual press!

http://www.healthline.com/health-news/ms-cigarette-smoking-may-speed-progression-of-multiple-sclerosis-051513

 In it I tackle smoking and recent study results regarding its effect on a person with multiple sclerosis. We've all known for a very long time that smoking is bad for us. I know first hand. I was a pack-a-day smoker for over 30 years. I only quit because I was terrified it would complicate things when I joined the TRANSFORMS trial back in 2007. The idea of "what if" plagued me and I figured I had the best shot at minimizing a negative outcome if I quit doing the one thing that was within my own control.

So on July 4th, 2007, I awoke for the first day in as long as I could remember and didn't start the day with the familiar comfort of a lung full of smoke. Instead, I pushed my way past the haze and the hurdles, the brain fog and the biting cravings, and made it through one day without succumbing to temptation.

It was no coincidence that I quit on the 4th of July. No, I wanted the country to celebrate my anniversary of quitting each year with a sky full of fireworks. No matter that they don't know me, nor would they even care. In my own mind, it's enough to believe it's a celebration of a turning point in my life.

Quitting smoking and joining the trial were the two best–and most health-transforming–things I have done in my life. Of course I tell my children that an even greater feat than quitting smoking would be to never have taken up the habit in the first place. But I'll take what I can get and hope the youngest keeps a level head and avoids curiosity, peer pressure, and the idiotic notion that "I can try it and not get hooked."

I noticed that I felt better. It wasn't right away, but over time. The hacking morning cough stopped. I could take a deep breath. I could smell even the most delicate of scents again. My taste buds exploded with excitement. It was especially nice to have my hair and clothing stay clean smelling.

During the TRANSFORMS study we had pulmonary function tests (PFT) to test our lung function since earlier studies of Fingolimod demonstrated a possibility of developing a slight asthma-like condition. I was both happy and relieved when I learned my lung function was normal. I felt like I had dodged a bullet. I was so glad I quit when I did.

I didn't use any smoking cessation techniques or tools unless you count those individually wrapped Dove Promises dark chocolate bars. I worked my way up to a pack a day of those bad boys. Between that and the sheer terror I felt going into the trial, they were enough to remind me of my goal of controlling my MS. To me, that was worth pushing through the cravings as they came at me. Taking them on one at a time and dealing with only the moment I was immediately facing.

It was the hardest thing I have ever done. I am proud to say I have never put even one single cigarette to my lips again (my secret tip for remaining a non-smoker).

I'm not writing this to be preachy. I'm not better than you because I don't smoke. I used to be a smoker and when you smoke, the most annoying person in the room is the recovered smoker. They want to foist their opinions and best intentions on you, figuring you never got the memo that it's bad for you, regardless of the Surgeon General's love note on the side of every pack. You'll quit when/if you are damn good and ready. I know that because I thought that.

All I am doing here is presenting some really interesting info in this article (which I'm sure you're going to rush right over and read, am I right?) about how MS is affected when you smoke.

Knowledge is power. I'm hoping anyone who has MS, smokes, and is miserable with lots of disease activity might consider the facts and conduct their own experiment. If you quit and start feeling better, let me know. I'd love to do a follow-up post.

Thanks for reading. By the way, my great readers boosted the Facebook "recommends" of my first article to nearly 400. I'm just fascinated by that and deeply appreciative.

So let's do it again! :)

http://www.healthline.com/health-news/ms-cigarette-smoking-may-speed-progression-of-multiple-sclerosis-051513

Weight Loss and My MS

Ever since I quit smoking in 2007 right before entering the TRANSFORMS clinical trial for Gilenya (Fingolimod), I have been (at least in my eyes) overweight. I gained probably 15 lbs. after quitting cigarettes. For the sake of full disclosure and honesty, I'll say I started out at 115 lb. and ended up at around 129-130 lb. Over the last few months of trying first one thing then another I had gotten down to 124 lb.

Now I know a lot of people who struggle with their weight will look at that and scoff, telling me I should be happy when I weighed 130 and that it's still "thin" compared to their own weight. While this may be true, one's own body image is a matter of perspective with one's own perception often distorted. I have always been thin all my life, so having any "muffin top" or extra padding in places not formerly occupied by fat is unnerving -- and uncomfortable -- to me.

I have noticed that just the addition of 15 lbs. has made a real difference in how my body responds to the residual MS symptoms I have always had since my very first, and most acute, MS attack way back in 1999. My left leg has always been weaker than my right, and my legs seem to tire faster when transporting the 3 seemingly permanent 5-pound-sacks-of-potatoes I've acquired since giving up the butts. Just getting myself up from a sitting position takes more effort.

Bending over to tie my shoes can leave me struggling and out of breath. I feel greater fatigue. And refusing to give up the "skinny" jeans, shoe-horning myself into pants meant for a younger, trimmer me, adds nothing to my comfort.

I can't afford new clothes and I'm tired of seeing myself staring back from what obviously must be a fun house mirror because NO WAY can that be my stomach, hips or thighs. So I'm doing something about it.

I am all about taking control of your health. I have spoken on that very topic many, many times. I think a person should be their own advocate, make changes for the better wherever they can, and enlist the help of others when they need to. So it's only natural that, while I'm preaching self-advocacy, I need to DO something about this body that's making me unhappy.

When I was a small child my mother took me to the doctor and asked "how can I fatten her up?" I was painfully thin, twig-like and appearing so fragile a good wind might snap me in two. The doctor, a man from eastern Europe, told my mother quite matter-of-factly, "Fat is not healthy." And that was that.

I remained thin into my adult life when I only broke into the triple digits after becoming pregnant at 98 lbs. with my first son. I ballooned up to 160 lb. at the peak of my pregnancy and then by all rights I should have whizzed around the room like a unknotted balloon the way I reverted to my near starting weight, stopping at 105 lbs. after giving birth.

Even though I had quit before during both of my pregnancies, I had resumed smoking once I was done breastfeeding as if only another's health were worth quitting for and mine was either immune to the documented effects of smoking or not worthy of protecting.

But everything changed when I read the Informed Consent. This is the big, thick, War & Peace size document that outlines all the possible things that can go wrong in a particular clinical trial, informing you of every side effect or adverse event that *might* pertain to the study medication as revealed during earlier testing. No matter whether it was at a higher dose, or given to a different group of patients with other health issues or not, they have to fully disclose anything that remotely resembles a possible side effect or adverse event.

That is to what the "informed" part of the Informed Consent refers. You only sign on the dotted line and agree to become a test subject if you have read and understand all the things they tell you about what they know thus far about the medication.

When I read that there was a possibility of a mild "asthma" like condition that occurred at much higher doses with not MS patients but rather kidney transplant patients in an unrelated study, I still worried that twenty years of smoking might place me at greater risk. I'm a hypochondriac after all. Worrying is my job.

So I put down the cigarettes on the 4th of July, 2007 and never picked them back up again. Cold Turkey. Just like that. Knowing that every year, on my anniversary, the whole country would celebrate my milestone with fireworks, I found the willpower (buried in sheer fear, it turns out) to give them up.

That's the beauty of smoking cessation: to stay quit, you just simply never put another cigarette to your lips.

I have discovered, much to my horror, that losing weight is MUCH harder. The same philosophy does not apply. I have to make conscious food decisions every waking minute of my day now that I am facing these potato sacks and trying to rid myself of them. How does one find the courage on a daily basis to do that?

I read the South Beach Diet book the same way I read science fiction: I got to the end and thought "Well, THAT ain't gonna happen."

I tried Slim Fast for a week but decided that wasn't a long term solution either. I needed to learn better eating habits and replace the old ones. Meal replacement shakes weren't the answer.

Then I decided to sign up for Weight Watchers. I'm only on week two and I don't get the whole Points Plus way of assessing foods, but whatever it means, I'm starting to lose weight finally. Plus, without even trying, I'm being tricked into eating healthier. Fruits and veggies, being "free" as they are worth 0 points, are now a major part of my daily intake.

I can't quite put my finger on it, exactly, but I'm sensing that the point system satiates that part of my brain usually occupied by shopping. Getting a free snack of raw baby carrots almost leaves me happy in the same way a BOGO sale does. I got something for free. Yay me!

And so I can see this working. I have a daily budget of points which I can dole out to myself however I like, plus extra points I can dip into during the week if necessary. I have only used up my daily points one time so far, and that day ended with me feeling bloated and uncomfortable anyhow, so it's not likely to happen again.

The only thing is, I signed up for the whole she-bang -- meetings and online tools. So far I have only used the tools (there's an app for that) and have not attended a meeting. I fear going to a meeting and being "judged" by those who think I have no business being there. I know that lots of people need to lose more than I do, and these meetings are their place to commiserate in safety among others who also need to lose an obvious amount.

I am scared they will give me looks that say "how dare you call yourself overweight!" or "How dare you insert yourself into our sanctuary, you obvious outsider!"

Just as fear keeps some overweight folks from doing things where they feel their appearance might matter, I'm feeling that same thing myself. So I won't attend a live meeting because I'm too self conscious.

After a week I have lost 2.5 lbs. and just that half-a-sack-of-potatoes feels so good to set down! I definitely feel a difference in the impact the weight has on my MS symptoms. My legs feel less burdened and tire less easily. I'm not napping all the afternoon away. Maybe it's got something to do with snacking on those fruits and veggies that keeps my sugar level steady, but I feel evenly energetic all day.

No marathon in my future, don't get me wrong. I feel as energetic as your average 50something woman, and that's fine with me.

I will continue to share what I think of Weight Watchers and how I feel my MS is impacted during this journey, but I really think weight loss, however minimal, can have a major impact on how your MS treats you, if you are starting out over weight. You don't realize how bad you feel until you start feeling better. Let's face it, if you have MS the last thing you want to do is lug around unnecessary extra bags of potatoes.

And that's just food for thought. Mmmmm foooooood....

The Halfway Mark

Last Thursday was the halfway mark in my clinical trial and for some reason I've been so melancholy about it that I didn't even want to blog it. I just don't want it to end and there's always the "what if" about whether it will get approval or not. I can't imagine that it won't but I fear if I don't hold my breath and cross my fingers, knock on wood and any other superstitious thing I can think of doing, I might jinx it or something.

Anyhow... the checkup went smoothly. My sister drove me again because of having to have my eyes dilated for the eye exam and OCT. My first appointment was at 9 am for the Pulmonary Function Test, and the last appointment of the day was going to be the OCT at 1 pm. I don't know why I expected it to all go smoothly and as scheduled. It never does.

I'm still getting over this head cold that decided to make a home in my chest. It only bothers me at night and first thing in the morning with a gagging cough that threatens to push my lungs out my mouth. I have started sleeping in my lazy boy all night just so I'm somewhat inclined. If I lay flat I cough nonstop. I was worried that my breathing test would be skewed because of this, so I made sure I told the guy doing the test.

He's the same guy who always does the test and after he did the first part of it (where I'm sitting in the plexiglas box) he said "you actually did better this time than last time since you had a cold last time."

Geeze! I'd forgotten that! Anyhow, he said that my lungs were normal just like they were last time.

Then it was off to go back across 4 lanes of traffic to get from the hospital to the Towers. For the last 7 visits I have walked there, risking life and limb. On this occasion however, the tester guy asks if we knew about the Orange Shuttle. Huh?? All this time there's been a shuttle I didn't know about?

He walks us out the back entrance to the hospital to an area with an orange sign that says "Orange Shuttle Stop". He leaves us there with the warning "Don't take the blue one because it goes all over town. The orange one goes from here to the Pavilion, to the towers."

A few minutes later, here comes a big white bus (he neglected to mention WHITE) and we just stood there as it stopped. No other people were at the stop but my sister and me. We tried to wave the lady driving the bus on, but she just pulled up farther and opened the door. "What are you waiting for?" she asks. "The Orange shuttle, we reply in unison."

"This IS the Orange Shuttle, get on."

We say "no it's not, it's white." (Like because she's inside, we are compelled to describe the outside to her so she has a clue). She rolls her eyes and tells us she keeps telling them she needs something orange to stick in the window so people aren't so confused. Turns out they have 4 orange shuttles and 3 of them are white. Go figure. We get on.

Next stop is the research department to see my trial nurse for the blood work, urine test, MSFC, EKG, and exam with Dr. Kantor.

The MSFC, I'd forgotten all about. It's the test with the dreaded Numbers Guy. See this post for the horrors of the first MSFC exam. The numbers guy stumped me again and I was left sitting and listening to him rattle off numbers for 3 in a row somewhere in the middle. It was those 7's and 9's again. You have to add 2 numbers and say the result and wait for him to say the next number. You add that to the last number he said while trying to forget the previous total which you just said out loud. Sound confusing? Try playing the game. Just as last time, the practice test went perfectly. I waited for the real thing to screw up.

Then, when that was over, I did the peg test and it seemed a little harder this time. My hands just don't want to behave themselves. Either that or the pegs shrunk since the first time. I actually had one peg stick to my sweaty fingers as I went to drop it in the bowl. It release when I had my hand, mid-swing, over the table. I lost precious seconds scrambling for it and nearly knocking it on the floor. If this is a test of how clumsy one can be, does that mean I passed?

Speed walking came next. I was so excited that, between last time I was tested and this time, I have actually retaught myself to run, I just had to ask...

"Is it okay if I run instead of walk?"

(laughter)

"no really."

(more laughter, then a pause)

"you're serious?"

"dead."

"No, honey, it's a walking test. Just walk as fast as you possibly can."

So I walked the way the kids at school walk when they know they aren't allowed to run but can't help pushing the rule a bit by speed gliding. I'm sure I did way better this time than last.

Next, the blood draw. Two little vials rested next to the rubber tourniquet, alcohol wipe and pokey stick. I tried to go to my Zen place and not think about it. I have small veins that wiggle and roll and hide when someone tries to prick them. Last time it took the one lady six tries before she went and got Geri (a name I can remember, yes!) who is the Master Sticker. She got in right on the first try and told me which vein and the angle it lies at in the left elbow area for future reference.

This time I say "well, if all else fails, you can go get Geri."

"Um, Geri got another job."

"Crap! But no, that's fine, you'll do just fine, I'm sure! No offense or anything. By the way, the vein's right here, running at this angle."

Thank God she left me with that tidbit of info before moving on to bigger and better opportunities. My nurse stuck me good the first time. But, right before she did, she said "Oh, I forgot to get the Kit out." She brings out this box and opens it to expose another several dozen vials (actually only 4 more, but once you've reached 6 vials they might as well get the last couple of drops you have left in you while they're at it). I nearly fainted, but I stayed strong.

I still needed to get my EKG, see the doctor, and fill out the PRIMUS paperwork. (That's a questionnaire about how MS affects your life). But there was no time. I was running late for my eye exam. She said "go to your appointment then come back for the rest of this stuff." So I did.

The eye exam went great. No changes to my vision and I left there all blurry eyed, gripping my sister's arm and feeling like Mr. Magoo. We went to the truck and had the lunch we packed while waiting for time to go have the OCT.

I love going for the OCT after seeing the eye doc because my eyes are already dilated and they bump me to the head of the line while the other poor saps are waiting for their drops to start working.

The OCT went well. I kind of enjoy watching the spirograph-like designs and the challenge of not blinking. I never have the urge to blink until someone tells me not to. Kind of like "Don't swallow." when you are having a C-spine MRI. All you can think about is to wonder if anyone every drowned in their own saliva.

We ended up the visit back at Research where I got the EKG and they scheduled a future appointment with the doc because he wasn't going to be able to squeeze me in that day.

The EKG went well. I heard the nurse and one of the doctors looking over my printout.

"Look at this."

"Wow!"

(my ears perk up and my heart starts pounding and palms sweating in anticipation of bad news.)

"Have you ever seen such a perfect EKG?!"

"Can't say as I have. That's a beauty. Just look at that spike."

(huh?)

That was my excitement for the day and lucky I wasn't still strapped to the machine or they might have changed their tune.

I was loaded down with my 3 boxes of new shots and my 3 bottles of pills and sent on my merry way.

Everything's looking good so far. Keeping my fingers crossed that the second half of this study is as successful as the first. I'd love to say I could barely remember my last MS attack -- and not have it be from cognitive dysfunction. :-)

Technorati Tags: ms, multiple sclerosis, fingolimod, fty720, clinical trial

Wasting Spoons

Hi. My name is Jeri and I'm a pack rat. I have been all my life and I'm not sure there's any hope for me. I'd really like to change but every time I make an effort to clean a spot in any given area of my home, it ends up becoming a prime location for everyone in the house to set stuff down. This could be solved simply by removing or inclining every flat surface in the house but then it would be hard to eat dinner with everything sliding on the floor.

Even though I have had a predilection for hording stuff and not putting things in their place all my life, (read: pre-MS) I like to use the good old Fatigue Excuse for not dealing with doing something about it now. I can't waste my spoons! I read the story (in which, for people with chronic illness -- lupus in the story, your energy allotment for the day equals so many spoons) and I decided that my spoons are more important than any amount of housework. Finally! I've been given a legitimate excuse not to force myself to deal with the clutter! The only thing better would be a prescription from the doc stating "under no circumstances should this woman clean anything." That would be SWEET.

So now, as I sit surrounded by stacks of papers that should be filed, projects that have been started and abandoned mid-inspiration, and baskets of clothes that have been searching for their long lost birth dresser, I wonder how others with MS are managing. I mean, even though I do have some fatigue and need to take afternoon naps, it's not like I'm on Provigil or something. I don't have it so bad that it has affected my daily routine other than to give me a get out of housecleaning free ticket.

I told myself that I can be happy living like this because it's a waste of spoons to spend all day cleaning. But deep down, I feel like if I really applied myself (and rented a backhoe and a dumpster) that I could have a house that had that minimalist, zen-like appearance that is so calming.

Instead, I clean one section of a room and then put on mental blinders and look only at that clean spot, relishing the idea that if I could encourage clean spots to grow the way clutter seems to my whole house would erupt in plain white walls, polished floors and flat surfaces holding only those indoor sandboxes with the tiny rakes, or maybe groups of black shiny stones that look cool but have no purpose.

I have tried to tackle this problem in the past many times to no avail. I signed up for Fly Lady's email list only to discover my inbox looked like the rest of my house in a matter of minutes. I quickly unsubscribed. Being bombarded with emails telling me I had to get completely dressed every morning including the shoes goes against my philosophy that shoes are footwear for outside the house and my pink fuzzy slippers are acceptable daytime wear when indoors.

I've also bought books over the years to learn how to de-clutter. Last weekend I decided to tackle a closet whose door had not been opened in several years. I found tons of saved gift wrapping paper, empty containers that would be good for holding stuff some day, and paint cans with the remainder of whatever color the spare room had been painted 2 colors ago (in case of needing a touch up). I removed a Lawn and Leaf bag full of useless things I couldn't part with and underneath the stuff on the shelf, guess what I found!?? A book called 500 Terrific Ideas For Cleaning Everything. Honest to God.

All of this is amusing, no doubt, but it's left my mind just as cluttered as my living conditions and wondering if there's a health benefit that could be obtained by sacrificing my spoons for the betterment of my environment. After all, I don't work outside the home and can pretty much take a nap any time I want to. What's it going to hurt to really roll up my sleeves and make a dent in this stuff? Will applying myself bring on a much feared relapse? Does living in clutter cause a mental funk that is conducive to possible exacerbations?

All I know is that Better Homes and Gardens ("than Mine", the cover seems to scream) will never be beating a path to my door no matter how clean I get the joint. Knowing this, what is an acceptable level of clutter? I would really like to get to the bare walls and floor and start over and find out.

I was in a flood once as a kid and we lost a lot of earthly belongings. It makes you realize that "stuff" is NOT important. We had our family and everyone made it through the ordeal none the worse for wear. That was all that really mattered.... so why is it now so hard to part with "stuff"? Some phd guy could probably tell me, but I want a real answer that doesn't uproot my subconscious in the explanation process.

If I fear a relapse so badly that I can't lift a finger to file some papers because I might tax myself, then I'm wasting my good years doing nothing while I'm completely capable of doing lots of things. Sure, if I take the fatigue into account, life has become harder, but I have seen people in wheelchairs who have accomplished more in their lives that I am doing with my body whose legs still get me around. I'd at least like to die with a clean house one day and have my headstone read "She gave up her spoons for a zen-like existence". Better than going out in a blaze of clutter and having my headstone read "if we could have only gotten to her in that maze of stuff, she might have been saved."

It would help if 2 other people in the house weren't also pack rats. They don't even have the moral struggle with it that I do. They are oblivious to the CHAOS (Can't Have Anyone Over Syndrome -- see FlyLady.com). I'm sure the conversation that goes on in their minds as they lay down their tools from the day's remodeling project or their backpack from school goes something like this:

"Geeze, she hasn't even cleaned a spot for me to set this junk down! What am I supposed to do with it? Oh well, maybe it'll balance here. Man, she needs to do something about this." (big crash behind them as they walk away and don't look back to investigate).

I guess I just found the reason those clean spots don't grown. I'm going out to buy a new set of spoons and roll up my sleeves. The only way to test out the theory that a clean house is a health benefit for your mind, body and soul is to actually put it to the test.

I will watch a marathon of Clean Sweep shows where people whose homes are way worse than mine have a make over and get de-cluttered, then pump myself up saying "you can do this! You can throw out that pair of jeans you haven't worn in 10 years or that packing slip from something you got in the mail 2 years ago!" But then I get suspicious that Clean Sweep never does follow up stories 2 months later to see if the newly decorated space is chock full of clutter again. All they did was give the pack rats a whole new set of flat surfaces that invite the full arms to empty spontaneously.

Whew! Just writing about it has warn me out! Maybe I and my spoons will go curl up in the easy chair and gaze at that clean spot over in the corner and drift off into a blissfully uncluttered dream. I hear Fatigue calling. Gotta go.

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