My favorite tales

I sometimes forget that multiple sclerosis is a serious disease. And that things like the daily wearing of disposable underwear and typing with my left (non-dominant) hand were hard and demoralizing at first. They only became standard for me after I learned the new way I could do them. 
 
Once when I was feeling really sorry for myself I watched the movie The Bone Collector. I became enamored with the lead character who was completely paralyzed and bed-ridden, but discovered the he could still work as a detective. 
 
He found he needed a team to do his legwork, but that his brain was as sharp or maybe even sharper than ever (and did I mention that he’s played by Denzel Washington? Yummy!).
 
Additionally, every day he has to convince himself not to kill himself. Well really, that would’ve entailed convincing someone else to kill him or help him kill himself, which is probably illegal in his state.
 
Read the book
 
I bought the book and re-read the story. I wondered about the author and how he came to the story. What made him think of it? I don’t want to kill myself but it does make me think of the emotional battles I do often fight. 
 
It doesn’t comfort me to know that doctors now consider chronic depression, which is exponentially more common in MSers than in the general population, to actually be a symptom of our disease, a bug in our brain chemistry.
 
As an aside, one of my friends recently “exercised her right to die” in Oregon. She basically just stopped eating and drinking, and passed away peacefully several days later. So really if he wanted to really do it without help, he could have. But I digress…
 
Watched TV show
 
It has now been made into a weekly TV show. It shows on Friday nights which is, I think, a pretty dead time slot for television. It reflects the wishy-washy confidence of the network I guess.
 
I became fascinated with the workarounds that he found for himself. And in the end I thought if he can do it I can do it.
 
It was the first in my fascination with people who overcome or persist in spite of their disability. I collect the stories now, and revisit them when I’m blue. It reminds me that I have successfully persisted quite a bit!
 
What I’ve learned this week

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MSer: Plan snacks

Waiting for my neighbor to deliver a plate of Thanksgiving day food, I pictured myself as a hungry baby bird, waiting with my mouth open and crying piteously.
 
Unfortunately, she was, at the same time, experiencing utter oven failure. With a house full of guests, doing their annual Thanksgiving day potluck, her oven had crapped out, and calling to tell me she would be late was, understandably, the last thing on her mind.
 
As I waited for her, I spiraled emotionally down, finally landing at full-on self-pity. I felt helpless, useless, needy, and ashamed.
 
When she finally arrived, flustered and apologetic, I muttered my abbreviated sob-story, burst into tears, and greedily ate the food she brought.
 
The moral of this story is that letting hunger overcome you is one recipe for the blues: you get weak, which leads to frustration, anger, and tears.
 
De-brief
 
What I should’ve done, for her and for me, is have a regular eating schedule, which includes well-planned snacks! 
 
I don’t know if this is relevant to all MSers, but I tend to not think about food until I am hangry. Those around me can tell when I’m overdue for food.
 
The National Center on Health, Physical Activity and Disability (NCHPAD) has some great articles on eating (as well as on wheelchair exercise, and mental health, among others).
 
Helpful tips
 
This is what I gleaned this time:
 
  1. Eat every four hours, even at this holiday season, and snacks should always include one protein and one carbohydrate to keep up your energy.
  2. Watch portions. Snacks are smaller than meal portions. They shouldn’t “fill you up” but rather help you to be “not hungry.”
  3. Choose your snacks to contribute to your calorie and nutrient needs, rather than considering them as “extras.
  4. Limit yourself to a 100 calorie snack if your meal is in one hour or so (one hour = one hundred calories); two hours, have a 200-calorie snack.
  5. Don’t mix snacking with other activities. Snacking absentmindedly while multi-tasking can lead to overeating.
  6. Keep snacks on-hand at all times. Carry two tasty, nutritious, ready-to-eat snacks in your bag so you don’t run out. Always be prepared!
I could’ve just had some Cheerios with Almond milk in a bowl and sated myself. Sigh.
 
Some other quick, two-food snacks include peanut butter or cheese with apple slices, raw veggies and cottage cheese, or 10-12 baked tortilla chips and salsa.
 
I know this already, but still I hadn’t planned ahead. Once I hit famished, I could think of nothing helpful.
 
Lesson re-learned. 🙂
Like you need to be urged to eat snacks!
 
Other things I’ve learned this week
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My MS in September

I used to love buying new school supplies even after I graduated. Like paper for the printer and pens and notebooks for a new journal. And colorful folders and sharpies and glue and glitter. Ah school supplies! 
 
Anyway, enough of my reverie. Back to the post at hand. I usually have a set routine in the morning that goes kinda by the wayside during the summer, and especially now because I’m between jobs; I’ve kind of let it lapse.
 
But now it’s September and back to routine so I thought I would share my morning routine with you:
  1. I wake up in the morning, wiggle my toes and put my knees to my chest and rock side-to-side a little bit.
  2. I sit up and hang my legs over the side. I bend over, touch my toes, then back up a few times just to get the blood kind of going.
  3. I turn off the white noise machine next to my bed and turn on the light there which I leave on for the rest of the day
  4. From the drawer next to me I retrieve the pill container where I keep a weekly supply of pill doses (I take stuff twice a day). I swallow my Gilenya and a few other meds and supplements in the morning using the waterbottle that I keep on my nightstand and refill as needed.
  5. Then I scoot the wheelchair over to the side of the bed and maneuver myself into it 
If the bed is dry I will just pull the covers up and smooth the duvet cover over everything. This is how I make my bed now. Otherwise I will remove the “chux” (see below!) to handwash in the sink, then make up the bed.
 
I now sleep with chux which are (these https://www.parentgiving.com/shop/reusable-underpads-30/c/ ) reusable bed pads for when I leak during the night. 
 
This is the sexy reality of my life: I have a leaky bladder (this is what we are currently calling incontinence? Uh, OK…) It is the bane of my existence and the most embarrassing symptom I have right now.
 
I roll myself to the bathroom and do my morning ablutions. If I have items to handwash, I start a sink full of warm water and good smelling, no-rinse Soak then throw them in.
 
Finally I eat something green before even having coffee (i’m keeping a bowl of frozen peas mixed with nuts, dried cranberries, and a few chocolate chips, moistened with salad dressing and eat a few spoonfuls while the water is heating), then have oatmeal with walnuts before anything else.
 
I only have 1 cup of coffee (have I mentioned my leaky bladder?), then have tea, cocoa, bouillon, cider or just plain water the rest of the day. 
 
Eating something green first thing in the morning is the most recent habit I have added to my routine. It’s my concession to The Wahl’s Protocol. Next I want to add some regular daily meditating somewhere in there!
 
Things I’ve learned this week
  • Reusable bed pads are called chux.
  • It’s okay, may be preferable, to eat apple seeds, so core and all.
  • The Bletchley Circle (BBC TV series) only ran for two seasons from 2012-2014 but the concept was apparently tried in the US with The Bletchley Circle: San Francisco in 2018.
  • Waterpik Water Flosser replacement tips should be replaced every six months, and if you buy one at a garage sale you should replace the existing one immediately! (Also you can download a user manual at the company’s website.)
  • Most peppers are not overly spicy but the ones with the black seeds are hot! Use gloves when removing the seeds and don’t rub your eyes!

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Isn’t investing gambling?

It is understandable that we MSers, facing exceptional circumstances, want to protect any money we make from being squandered.
 
Our medications and healthcare costs are astronomical. Also, as a population, we physically may be forced to retire prematurely.
 
Like the U.S. Securities and Exchange Commission (SEC) says “Knowing how to secure your financial well-being is one of the most important things you’ll ever need in life.” 
 
This is especially true for us.
 
The MSer’s finances
 
Traditionally banks paid enough interest to make just saving what we could until retirement prudent. Unfortunately, not anymore.
 
How “safe” is a savings account if you leave all your money there for your working life, but the interest it earns doesn’t keep up with inflation when you are no longer working and need it?
 
This is why many people keep some of their money in savings, but look to investing to amplify their other money. For most people, the only way to attain financial security is both to save and invest over a long period of time. 
 
Generating vs. earning
 
I suggest we think about our finances as needing to generate income rather then simply earning it. Viewing it in terms of generating an income “takes the power out of (the provider’s) hands and places it into your own.”
 
It reminds us that we still have a lot of control over our future, maybe even more than this disease does.
 
I work hard for my money. It makes sense that my money should be working for me, too.  Why should investing be only considered the playground for the wealthy?
 
I resolve that it shouldn’t be. And for those of us in the U.S. with chronic disease, who live in this capitalist society, it is even more imperative.
 
Isn’t it gambling?
 
Well OK, yes and no.
 
For example, my clutter is gambling: 
“I purchased bargains with potential usefulness. I bought things as a gamble. I gambled on the chance that one day, my dreams would come true. I would turn into the kind of person who mended expensive but damaged clothing. I would be the tinkerer who repaired a lamp that made guests gasp in delight…(But) an amazing bargain that ultimately makes my life more difficult isn’t an amazing bargain at all.”
from Dana White’s book Decluttering at the Speed of Life
 
So is playing baseball:  “You can’t steal second base and keep your foot on first.” (Frederick B. Wilcox)
 
Thus I guess that investing is gambling too, but it’s risk that can and should be mitigated.  (You should never risk more than you can lose and still be okay.)
 
So “learn to earn”
 
While we probably aren’t born knowing how to invest, I think everyone should learn at least the basics.
 
Visit the SEC website. If you are still working, take advantage of webinars, podcasts and classes offered by your 401k provider. Be careful about the sources of your info, but you can teach yourself.
 
And ask for help if you’re scared. The MS Society offers free or low-cost consultations with experts
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Ideas from the mini-kitchen

It’s almost summer! Here’s what I’m eating.
 
Frozen Green Peas
 
I try to eat fresh produce first thing in the morning for no other reason than I felt better doing it as I tried (and failed) the Wahl’s Protocol Diet.
 
This has you start the day with a fresh kale smoothie (after the overnight “fast” you get from sleeping) to “feed your mitochondria.”  This is my compromise.
 
Right now on Mondays I make a big bowl with a bag of frozen peas, a cup of nuts or mom’s “trail mix” (has nuts, raisins and chocolate!), and whatever leftover salad dressing (I’m using honey-mustard at the moment).
 
I keep it in the fridge with a spoon and just eat a few spoonfuls first thing in the morning while I’m heating up water for tea or oatmeal. It usually lasts me the week.
 
Whole Wheat Tortillas
 
I find tortillas are an easy carb to keep instead of bread for sandwiches. They seem to  last longer in the fridge, I get some whole grains in my diet, and they are easy to handle while working at the computer.
 
I really became a fan when I started eating salad greens wrapped in them. I justify it as an alternative to croutons. See my post about it here:  My salad wraps.
 
Recently I’ve had them with a filling of plain cream cheese, a pinch of crystallized lemon (which i already have) and raisins.
 
Another time I had some leftover bacon that I stirred into peanut butter and spread into a warm tortilla. Yum!
 
Ramen Noodles
 
Finally, this week I had an a-ha moment. It never occurred to me to buy the cheap packages of Top Ramen I so relied upon in college and NOT use the flavor pack! Or to just mix them up into soup. They are so flavorful and salty I viewed them as a bit of a guilty pleasure.
 
Then I was reading this old blog entry when I got to the part about making stir fry and using ramen noodles. I realized this would solve a problem for me: a shelf stable way to have a quick rice alternative! (Exploding head emoji)
 
I always think of rice as a quick and easy base for a meal. But it is messy to fix in a microwave and I don’t have space for yet another electric device like a rice cooker. So I asked a caregiver to pick me up some ramen packages this week.
 
My first meal with them was noodles, frozen broccoli, frozen meatballs, and just a pinch of flavor pack. Genius!
 
Others
 
I’m still enjoying microwaved frozen spinach with peanut sauce (but I haven’t yet found a bottled favorite; suggestions welcome!) and microwaved sweet potatoes, skin and all, with peanut butter and cinnamon-sugar.
 
And my current refreshing favorite is yogurt with added-right-before-eating frozen blueberries. Stay cool, MSers!
 
Links used above
  • True Lemon – “True Citrus products are the easiest way to add real, fresh squeezed taste to your water and recipes without piling on the sugar and salt.”
  • A Slob Comes Clean – “Realistic home management strategies and a message of hope for the hopelessly messy.”
  • The Wahl’s Protocol – “A guide about how to treat autoimmune conditions using functional medicine and nutrient-rich foods, from a doctor, researcher, and sufferer of progressive multiple sclerosis.”
  • My salad wraps – My post about eating salad greens in a tortilla.
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Stress and my “clutter threshold”

“Accept the limitations of the space you have, and declutter enough that your stuff fits comfortably in that space.”
–Dana White, Decluttering At The Speed Of Life
 
I imagine most people have already figured this out by adulthood. And I wouldn’t consider myself slow. But as a kid, I never paid attention to how things stayed clean.
 
I adjust too easily to an imperfect situation: “…grabbing a coffee cup from the top rack of the dishwasher or a pair of socks from the pile on the couch doesn’t feel the least bit awkward, so the visible pile doesn’t register as a problem.”
 
Where did all this stuff come from
 
I figured out laundry in college as I needed clean clothes and bedding, for example. And I learned to keep the floor clean because, like Dana White points out, “if your floors are clean, everyone thinks your house is clean.
 
I pretty much always lived alone and kept my home clean enough for visitors. But when I got married suddenly we had two households of stuff in one house. And I never realized how to be disciplined about decluttering. Everything seemed useful!
 
Now that we both have mobility issues, it’s become obvious that we can’t move freely around this much stuff anymore. The aforementioned Dana White has written extensively about this. Luckily, she speaks to me.
 
Clutter threshold<
 
Dana talks about how we all have our own “clutter threshold,” the point at which all the stuff we own has become overwhelming. That if we live above it, our space is out of control and hard to keep clean, but if we can declutter down below it, our space at least stays manageable.
 
That’s where I’m aiming now. Decluttering is getting rid of things we don’t need. But the point of decluttering is to keep stuff. It isn’t to get rid of things we want to keep; it’s to identify those things and then to make space to enjoy those things.
 
Clutter is one of my triggers 
 
It’s also about the stress I feel living in an out-of-control environment.
 
A 2013 study showed that while both positive (like a wedding or the birth of a new child) and negative (like living over my clutter threshold) stress can impact the course of our MS, the negative stress can actually trigger disease activity.
 
 
So I’m working on changing my mind-set, my ultimate goal for my home. I aim to have less stress by having less stuff.
 
Other stuff
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Lightbulb. Skin is an organ

 
I have never really taken care of my skin. I never got acne, just the occasional pimple. I washed my face at least once a day with Phisoderm or Cetaphil, gentle cleansers.
 
I didn’t moisturize regularly, and applied sunscreen only when I planned to spend the day out doing some activity, like skiing or going to the beach. 
 
But this article made me think about my skin as an organ. According to researchers, it is our largest organ, roughly 8 pounds (3.6 kilograms) and 22 square feet (2 square meters).
 
Could it be affecting or partially responsible for my MS? How could it not?
 
Medline
 
I poked around in the National Library of Medicine’s  PubMed* search: [(skin[Text Word]) AND multiple sclerosis[MeSH Terms]], but didn’t see anything relevant. Mind you, I’m not a scientist or expert in medicine. Caveat Emptor! 
 
*PubMed comprises more than 29 million citations for biomedical literature from MEDLINE, life science journals, and online books.
 
 
I did see at lot of discussion about MS and sympathetic skin response (SSR) as diagnostic test. The SSR test measures whether the sympathetic nerves of the skin are working.
 
Apparently in a lot of MSers, the response is absent in one or both limbs, for example. In healthy subjects the response is always there. This is interesting, but not something I think I could fix!
 
Google search
 
Next I tried an internet search. Again I found nothing MS specific, although there are some warnings on various drugs about possible skin cancer. Meaning that some subjects began showing skin cancer during or after the trial.
 
There is no way to tell if the skin cancer was already “on board” before the trial started. Or if the drug made them more sensitive to the sun.
 
 
So there is some involvement there!
 
Ergo
 
Yet again I find interesting (to me) information, but nothing conclusive. Just a vague hypothesis: I think I should be taking care of my skin better.  But who knows what that means?
 
For now, I will just accept prevailing theory until proven otherwise. So I resolve to craft a regular, daily, non-negotiable skin care routine, something like this:
  1. Wash my face once a day, every night. Don’t over wash and risk drying out the skin, causing it to produce more oil.
  2. Shower, wash hair at least once a week. Gross I know, I used to shower daily but it’s hard now. Plus I read this and this
  3. Wash my feet every night before bed, slather with lotion
  4. Slather body lotion daily – moisturize, moisturize, moisturize
  5. Use sunscreen daily or at least before venturing outside anywhere
  6. Ask your GP to include a regular skin cancer check in your annual, or see a dermatologist. Some doctors recommend every year!
  7. Drink lots of water
All this is based on my gut feeling about the right thing to do for me. Your results may vary! 🙂
 
Other stuff
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How to thank a caregiver

Family caregivers give a lot and don’t always get much in return. As much as they love the people they care for, the work involved in family caregiving can be exhausting. 
 
It is estimated that over 40 million people in the United States are unpaid caregivers to an adult family member or friend. That’s like 21% of the population! 
 
According to the National Alliance For Caregiving, “care delivered by informal and family caregivers add up to $257 billion each year.”
 
Since the count of MSers is now recognized as close to 1M, it would be interesting to see what the numbers are for those caring for someone with MS or another chronic illness.
 
And although the majority of family caregivers are women, more and more men are becoming caregivers too.
 
Imagine How They Feel
 
If you live in the same house as your caregiver, be aware that they may often feel invisible. Everyone’s attention can seem to always go to the MSer, causing them to feel that no one cares about them. Many say, “no one even asks.”
 
Also research shows that the “emotional stress of caring has little to do with the physical condition of the person with MS or the length of time the person has been ill. Emotional stress seems more related to how “trapped” caregivers feel in their situation.”
 
Just know that caregivers give a lot and don’t always get much in return. As much as they love the people they care for, the work involved in family caregiving can be exhausting. 
 
“The most successful carepartners welcome and appreciate the practical and emotional support of other people,” says the NMSS. Also, they “don’t give up the activities or hobbies they enjoy.”
 
What can I give
 
How can you show appreciation to your caregiver? Simply asking them is a great place to start.
 
Other ideas
  • Express your gratitude out loud and often. Brag to others about your caretaker.
  • Write out a note or card. Taking time to hand-write why you appreciate your caregiver can be very meaningful plus it gives them something with kind words they can reread in the future.
  • Suggest a coffee-break or cup of tea. In fact, encourage your caregiver to take breaks. Make sure they are taking time to fill their own tanks so they have the energy to take care of you.
  • Celebrate National Caregiver’s Month (November in the U.S.). It’s an opportunity to draw attention to the needs of all caregivers.
  • Show interest in the things that your caregiver is interested in. It shouldn’t only be about you.
  • Share jokes with each other. There is power in a good laugh. Try to do it at least once a day.
  • Find support services or even classes that might be right for them, or figure out a service they can use to outsource one of their regular chores.
  • Offer to help them with a task you know you can take on. Or, when visitors come, make the most of your time: be prepared with a short list of to-do items you need help with.
  • Try to temper your emotions, maybe make a conscious effort to be cheerful.  Facing perpetual crankiness can be draining.  Remember that your caregiver is not your therapist.
  • For paid help, you can give a bonus, a day off, or a quick call to their supervisor to report what a good job they do.
Look for ways to make your caregiver’s life easier. Even small gestures can make a big difference to someone worn out.
 
Other stuff

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More feed yourself

I feel like I just got comfortable with having salad for lunch every day in a wrap. But it’s so cold now! (Ha, OK: February in San Francisco!)
 
Because I still don’t think of vegetables first when hungry, stuff like this is pleasantly surprising. Like I’ve said (and I shouldn’t be so surprised) I have found eating vegetables every day makes a big difference in my energy.
 
So I decided to switch for awhile from lettuce to spinach that I can eat warm. Thus I can still cross ‘eat leafy greens daily’ off my to-do list.
 
Leafy Greens
 
Now in my mini kitchen (think small fridge with smaller freezer compartment, electric kettle, and a microwave), I keep a bag of frozen spinach.  In the simplest feat, I heat it up and pour bottled peanut sauce on it. Delicious, quick and easy. 
 
Another quick way to use frozen spinach is to toss it into canned soup. Again, no prep. 
 
I imagine you can buy other dark greens like Brussels sprouts, chard, or bok choy already prepped in the freezer section as well. In fact, I have a friend who gets her kale that way which avoids prep for those with limited hand dexterity or a limited kitchen!
 
Sweet Potatoes
 
My other healthy quick go-to lately is sweet potatoes. I wipe them clean with a wet paper towel, prick several times with a fork, then pop in the microwave for two minutes or more. When done I retrieve and just start eating, skin and all. 
 
“Sweet potatoes are one of the healthiest foods known,” according to some health and wellness gurus. “The skins of sweet potatoes contain a number of additional nutrients, so it is beneficial to eat your sweet potato with the skin.”
 
It’s a great hand warmer too.
 
Whole Grains 
 
I also have oatmeal every morning with walnuts and dried cranberries.
 
“Although oatmeal is nutritious, adding other toppings to your oatmeal will balance out your breakfast,” say gurus again. “Stirring dried cranberries and chopped walnuts into your daily oatmeal will add fruit and lean protein — the walnuts — to your breakfast.”
 
Instead of buying those little packets, I just get the regular canisters of oatmeal, then use an old plastic pudding cup container (light weight, plus portion control) to parcel out the morning’s amount, and add a handful each of walnuts and dried cranberries. 
 
I sprinkle on some coconut sugar (lower glycemic impact), heat water to boiling in my electric kettle, add it and cover the bowl and let it sit for a few minutes. Serving of nuts crossed off the list.
 
Eating like this crosses things off my daily to-do list: veggies, nuts and whole grains. Check!

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I’m an MSer and a debt-oholic

Not unlike so many Americans, we battle debt but having a chronic illness in a country that does not have universal healthcare means that we are responsible for the slack on our own.
 
And all those costs like co-pays and coinsurance and medical equipment and incontinence supplies fall largely to us. 
 
How I became a debt-oholic 
 
When I was in college the credit card companies were eager to get us to sign up for a card. In our own name. How could I not? Now I recognize that as the seduction of a drug dealer. Just a little taste and then they got you.
 
Ever after, for the most part, I carried a balance and paid the interest on my credit card. I figured it was a small price to pay for the privilege.
 
I was convinced that, within reason, I could charge what I wanted when I wanted it and pay it off in installments.
 
What I should have done
 
First, amass and save a cushion, a small emergency fund, maybe $1500 in current times. Then keep empty credit cards in case of emergency, like the water main breaks or the heater goes out. 
 
(I like this idea better than accruing a large emergency fund. But another good place to stash additional emergency funds might be in your Roth 401k: although it is a retirement account, you could take back out little chunks up to the total amount of your contributions only, not any earnings, at any time with no penalty! I guess it depends on how you define ’emergency’.)
 
If you do need to use the cards, you must pay them back down to 0 again as soon as you can. That needs to go on the top of your priority list.
 
The plan in a nutshell
 
  1. Have 1-2 cards in your own name with zero balances that you can use as security when renting a car or getting a hotel room, but don’t use them to pay with! You are just showing vendors that you are good for it, that they can trust you. 
  2. If you must use a card, pay off the entire balance at the end of the month, ideally before any interest has been applied, but definitely as invoiced. 
  3. If you must carry a balance on the card, strive to pay it down quickly. And keep your eyes out for transfer offers that make sense for you.
  4. If you owe multiple loans and/or credit cards, note the interest rates of each and pay as much over the minimum payment as you can on the highest. Also I think you should never pay just the minimum on anything you owe. (And make sure there is no prepayment penalty that a lender wants to charge you for paying off the loan early. Hello? It’s your money! Not sure when that idea started, but it is definitely not consumer-friendly!)
When you pay even $1 over the minimum, it goes entirely towards just the balance, so if the agreement of your loan is that you are being assessed interest on whatever your current balance is, you can reduce the underlying balance this way: by paying extra over the minimum on all debts, even if it is as little as pennies! And as you pay one card off, you can add that payment amount to the payment amounts of the next one, and so on.
 
Opinions expressed are my own
 
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