The MS Money Suck

Multiple Sclerosis gets spending

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Everyone knows that MS sucks.  You don’t need a degree to be able to figure that one out.  But, if you’re one of those science type people who need an official hypotheses I can back up this statement.

Hypothesis-MS sucks

Examination-MS patients complaining about sucky MS symptoms

Research-observation of MS patients dealing with sucky MS symptoms

Proof-MS sucks

Still not convinced?

Then there’s this; immediately after my MS diagnosis my then neurologist told me that, MS sucks. She had all kinds of fancy titles, degrees and med school debt to back her up.ID-100249751

And we don’t have to be an Ivy League grad to realize that living with MS is expensive.

Hell, living with any type of chronic illness is expensive.  Just thinking about words like insurance, pharmaceuticals, medical tests, therapy, copays, and sick time and even the cognitively slowest person (ie, dumb) starts to appreciate how costly it can all be.

Therefore we all know that MS and money clash in the poorest of poor ways.

I expected this upon my diagnosis and tried to start preparing and saving.  What did me in were the ways in which MS would leave me financially strapped that I couldn’t even anticipate.

For example, due to multiple sclerosis I am extremely temperature sensitive.  Extreme cold can be painful and extreme heat can make it hard for me to breathe.

If given a choice I prefer the extreme cold as rumor has it that breathing is pretty important.

My ideal living and sleeping temperature is 73 degrees.  And lucky for me, I live in New England and so there are several days in the year when my environment naturally drifts to 73 degrees.

Five of them, to be exact.

Yes, for 5 days a year I don’t have to worry about air conditioning or heat.

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Every other day I’m using some nasty utility company to heat things up or cool things down and as such, I’m watching good green cash blow out the a/c filled window or burn up in the fiery furnace.  Actually, to make the money suck even worse, I don’t have a furnace.  My heat is electric.  And yes, the electric company loves me, the stingy money grabbers.

Here are some other unexpected ways that multiple sclerosis is super expensive.

I have the most basic of basic cell phones- an actual flip phone.  Yes, they really do exist even if they are impossible to find.  They are officially the dinosaurs of technology and I have long been convinced that they are called flip phones because people like me are constantly flipping them somewhere.

I have accidentally flipped my phone across the room several times.

And dropped it on the ground.

And banged it against a wall, car or furniture.

One would think that replacing a boring, basic phone would be cheaper than replacing a fancy/schmancy updated one.

One would be wrong.

Very, very wrong..ID-10034354

Moving on-cognitive difficulties are also super expensive.

Here are two pricey examples.

Because I’m constantly flipping my flip phone I worry about replacing other pricey electronics as well. It’s not unlikely that I will drop my laptop and so I always get the insurance protection on it.

This past January I called my geeky friends at Geek Squad and wrote down all they told me about renewing this policy.  The first thing I had to do was respond to an email they would send me on a particular day.

On that day I received the email and looked at my notes to see what I needed to do at that point.  What I needed to do was renew the policy as my notes clearly stated.  What I did was delete the email, thinking it wasn’t important.  Later I realized that the policy was canceled and now my little old computer, also ancient at 6 years old, is alone in the world with no protection and clumsy me acting all dangerous around it. ID-10075806

We are just one unexpected trip away from complete financial, technical destruction.

While trying to build up a writing career I applied for a grant that would help me out financially while I wrote the next great American novel masterpiece, you know, like 50 Shades of Grey.  I read the rules for applying for the grant several times.  Then I read them several times again.  I updated my grant submission and just before hitting send, I checked the rules yet again.

And several days later I realized I had messed the whole thing up and my submission would likely not count as I hadn’t followed the rules.  And the deadline had passed.  That little bit of cognitive difficulty cost me $5000.

(Well, $5000 assuming I would have been awarded the grant as opposed to other ambitious writers but I choose to assume I would have won if not for that damn costly MS!)

Many people with MS also live with another serious illness.  Mine is germ-a-phobia.  Yet, MS makes me constantly exhausted so I need a lot of help with cleaning. Most of this help comes in the form of disinfecting wipes.  And these wipes don’t come cheap.

Luckily I can sometimes find coupons to use for purchasing these amazing energy saving, germ killing power house cloths.  And the coupons do help, if I remember to use them.  Which, of course, I never, ever do.

While talking about shopping let’s take our meager pennies to the grocery store, shall we? ID-10043818

I try and try to be a saver and the grocery store is no exception.  But disinfecting wipe coupons are not the only coupons I forget.  I forget all the coupons.  I could deal with that, really, how much do coupons really save?

The problem is that I have picked up this bad habit of buying the wrong thing.

Even as I’m looking at an item and putting it in my cart.

Even as I bring it home and put it away.

I will still see the item I needed.

Then I open said item only to discover that it is the wrong thing and thus, unusable. I would return it for the right thing but the product is now opened and the receipt was trashed a long, long time ago.

It’s enough to make a person crazy.ID-100178602

Or, it would be if we MS’ers didn’t already feel crazy.

Thankfully, there is a remedy.

It’s called wine.

I try to save there too.

I bought a bottle recently and saw a promotion where if I save my receipts and bought more bottles I could get a rebate- $3 off two bottles, $6 off four etc.

I was so pleased by this that the next time I was at the liquor store I bought that specific bottle.  I can fight the MS money suck after all.  Wine is crucial and why not get some money back when I drink it?

I was so pleased with myself and my savings effort that I was home and had the bottle open before I realized that I had forgotten the damn receipt!

Good thing the rebate called for big bottles of wine.  I’m going to need them……ID-10012629

Hi friends,

                I would love to hear of some of the unusual ways MS is robbing your piggy bank.  Feel free to share your thoughts in the comments section below.

                Also, my friends over at the Accelerated Cure Project asked me to remind my readers of the fabulous research they are doing with the I Conquer MS project.

                iConquerms.org is a patient centered, patient powered research initiative that needs the help of all of you!  And unlike most things MS related, it won’t cost you a penny!

Please check them out  iconquerms.org

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16 thoughts on “The MS Money Suck

  1. im so happy to hear someone else complain aabout how ms is expensive. all the things you listed are correct. the state wont help with giving you assistance to help with prescription cost or food. the cost of everything is going up here in michigan. now i here the medicare premiums are going up in 2016. HOW ARE WE SUPPOSE TO STAY HEALTHY, EXERCISE, THERAPY, DR APPTS WHEN WE HAVE TO WORRY ABOUT MONEY? MS TRULY SUCKKS.

  2. IM SO HAPPY TO READ YOUR BLOGS. YOU FIND HUMOR LIKE IVE BEEN DOING. ALOT OF YOUR THOUGHTS AND FEELINGS ARE THE SAME WAY I FEEL ABOUT THINGS. GLAD TO SEE SOMEWHERE IS FEELING THE SAMEWAY I AM ABOUT MS.

    KEEP UP THE GOOD WORK!!!!!!

    THIS IS MY 5TH YEAR HAVING IT AND IM STILL LEARNING

    • Hi Quintessa-beautiful name by the way! Thank you for checking out my blogs and for your awesome comments. It’s true about using humor, I swear I would have gone insane along time ago if I didn’t learn to laugh at the crazy. We are more alike than you know. I have been living with MS for 5.5 years so I’m in the same learning space that you are. One thing I have learned is that just when I think MS can’t possibly surprise me, it surprises me! My very best to you friend. Hang in there on this tough journey and please keep smiling…

  3. Yes, you get MS, you get the bills that go with it. Bummah! The one that bugs me is, because of leg problems, I had to give up driving a standard transmission. They’re cheaper to buy, cheaper to own, and cheaper to maintain. (They’re also more fun to drive!) Now I’m stuck with automatics.

    There’s good news, though: MS comes with mucho freebies: free meals and tchotchkes at MS seminars, free t-shirts at fundraisers. (It won’t surprise you that I’ve waxed eloquent on this topic in my blog.) And I’ve heard of some people who get to travel to exotic locations such as Chicago on big pharma’s tab. Whatta racket! 🙂

    So we can mourn the losses or celebrate the (admittedly lesser) gains. I choose the latter.

    • All great points my friend! That’s why I make fun of the bad so I can smile instead of just going crazy. I’m actually already pretty crazy so going there would just be a waste of valuable energy-haha! The standard transmission is a great one. But it’s true about the freebies- I’ll take all I can get! The mini chocolates at the MS fairs are my favorites. They must have some MS fighting benefits! Chicago was also an awesome perk by far.

  4. Very well said Yvonne. I finally broke down an purchased a cooling vest with my Amazon points. It is not the cadillac of vests like my wealthy friend in CA treats herself to nor did I have the money to buy the very pricey cooling mattress pad but this will do and after many years of not sweating and now many more years of crappy yard work to do I truly need that vest. Set me back but I had Amazon points as I buy everything for the house with my Amazon card. My husband thinks it is a stupid idea but he is finally starting to “get” it as now he has an autoimmune disease which leaves his skin falling from his body and bodily systems in need of constant surveillance and protein, protein and more protein (expensive) and he only sweats from the head – I can’t even do that! Suddenly his disease (and maybe mine) means something. Ah Karma. I wish the money fairy would visit me at least once as now my renter has left and I have 2 mortgages because Mr. skin falling off bought another house before selling the other house as he was flush with cash or so he thought and now he is having trouble working and he can no longer do anything around the house and who does he look to to pick up the slack – ME. Nope, I told him, like Flip Wilson (the devil made me do it) my MS does not allow me to do it so suck it up and live with and YES God bless Chlorox wipes!!

    • Hi my friend It’s all so crazy, ain’t it??? I feel bad that you bought a cooling vest though as my friend Rick commented below, MS does get us some freebies once in a while. The MSAA will give patients free vests. The vests are not that fashionable but they do the trick. I hope you look better in yours than I do in mine. Not that it matters- my vanity got thrown out the window a long time ago! Thinking of you and your husband and all that you guys are going through. Glad to see someone else is addicted to the wipes. Chlorox or Lysol- I literally have both on hand ALL THE TIME!!!

  5. Hi, Yvonne~
    Great post! May I make a suggestion? I keep a notepad clipped to the fridge & whoever uses the last item is to write it on the notepad for the next shopping trip. When I find coupons for items that we use, I clip them with that notepad on the fridge & take it all to the store. The items I am using a coupon for I give to the checker first with the coupons I have…as I have a tendency to forget if I save them for last. The best money saver I have found as far as buying groceries is, 1.) Buy according to sales, AFTER, 2.) you’ve planned your menu around what you have in the house. Scan your food you have in the house & make a written menu using those items & only put on the list what you need to complete those meals. AND re-purpose food- for instance, if you cook hamburger meat today for tacos & you have meat leftover, tomorrow use it for spaghetti or throw some BBQ sauce on it for a BBQ sandwich. Having a written out budget is crucial also. These take discipline & cognitive skills, so it can be a challenge to get in the habit. But I feel if I can do it, most others can do it, too. I learned most of this from Dave Ramsey & it does work.
    As far as money busters in our home…it seems to be spontaneous purchases. They are never big purchases individually, but they add up, as you know. Another reason for a budget. If, for instance, you have $50.00 earmarked for entertainment for a particular month, once that $50.00 is gone, that’s it! Having a written out budget makes one a much more intentional spender, rather than an impulse buyer.
    It has taken me years to learn & implement these things. I started disciplining myself in 1999 & it has been a work in progress. It didn’t all happen at once.

    • Thank you so much Susan-it gets so crazy doesn’t it? I do attempt to do most of these things but I still screw up left and right. But we just keep plugging along….. Hope you are doing great my friend!

  6. Years ago I read something that said MS is one of the most expensive diseases to have (lucky us). The article was only pertaining to cost of treatment, meds, & therapy.
    The source probably didn’t have the idea to include all the expenses you mention.
    Thinking about selling my body parts online to make some cash!
    Great piece!

  7. I just surfing the Net and stumbled across this site.(no pun intended) I to have MS. I was Diagnosed with MS in 1996. I was 28. I had just gotten married and was expected my first child. I was a brand new Paramedic at the time, so I had somewhat of a clue as to what MS was. As you know and can image… I FREAKED OUT. I began to think, what’s going to happen to me, will I still be able to work, Will I be completely incapacitated? As yo all know the “money thing” was a HUGE concern. Knock on wood, I have been one of the “lucky ones”. I have had very few relapses and I am still working. I am thou always thinking of the future. I got a job as a firefighter…yes firefighter about 16 years ago. Again it hasn’t been an issue yet. I know I am playing Russian Roulette but I have to keep going. I am taking classes to help me “get off the line”(get out of doing the everyday firefighter duties) and take care of myself better. So with my search for something that I will be able to do IF something happens to me health wise, I will still be able to have an income. That’s when one of my coworkers, a fellow fighter, took me to a meeting that changed my life. This meeting showed me I can make as much money as I wanted to and still at home doing it. I sound like commercial. I hate that, but it’s true. There are already a group of people with disabilities doing this. That’s when I really knew I could sustain my financial future with out being worried if I was going to have enough money to eat. No to mention the medical bills. I am still working as a Paramedic/Firefighter but subsidizing my income with my new business. I will definitely say, IT’S NOT a get rich quick scheme. You put into it as much as you want out of it. Since 1996, I got married, had 2 wonderful children, got divorced and lost my home. Since then I have found the love of my life(who by the way knew I had MS but stayed with me) bought another home, got a new car and a renewed lease on life. So you can say I have been to the bottom and clawed my way back up. I’m not at the top yet but much happier and better off. Go to my web site and see if it’s right for you. I was definitely for me.

    • Thank you so much for reaching out and commenting Drew- I really appreciate it! I will definitely check out your website. Good for you for attacking this issue and coming up with a solution that works for you. And thank you for your honesty too. I’m inspired by your comment and hope you will come back to my website again. My very best to you!

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