Yvonne deSousa's Blog, page 9
June 25, 2019
Chicken Scratching Away
Funny how I can’t seem to get chickens off my mind. As I continue my quest for a healthier diet, healthier as in baked potato chips as opposed to the regular kind, I appreciate that chicken is a good source of protein.
(Only for us meat eaters though; you vegetarians are stuck with tofu and quinoa.)
The problem is, I can’t cook chicken. No matter how I do it, it turns out tough and dry and yuck. But I’m working on it.
The real reason I’m thinking about chickens though is that the medical universe messed up somehow. Physicians are supposed to be the ones with illegible handwriting, not the patients. It’s actually a requirement in med school that you must have atrocious handwriting in order to graduate.
It’s true. You can even specialize in this. It’s called Medical Transcription.
Bad handwriting in the medical field is often referred to as chicken scratch. I think that’s because in the old days, when doctors came to your house, people would sometimes think they were the chickens circling the yard; they kind of looked alike so it could be confusing.
I’m not a doctor but lately, on my most fatigued days, I find that my handwriting is so bad, I can’t even read it.
Is this an MS thing?
Is this just me being lazy, which is due to fatigue, which is back to this being an MS thing?
However MS is involved, this is quite disturbing.
One of my life’s proudest moments was when I received a perfect penmanship award in the fourth grade. My friend Glen also won the award and that miffed me a bit but still.
We got called up to the stage during an assembly and were given fancy certificates and nice pens. I might have been shy, and clumsy, and couldn’t understand math AT ALL, but who cared, I had perfect penmanship!
It’s an honor I cherish to this day.
Or at least I did.
Now all I can think of is how disappointed Mrs. Eastman, my fourth grade schoolteacher, and all my classmates would be.
I was a handwriting fraud. I’d let my once perfect cursive (for you young uns, cursive is a handwriting style before computers gave us the word font,) fall down the bad writing, chicken scratch tubes.
Some days, I’m impressed with my lovely signature.
Other times it’s so bad I don’t even know who I am.
Just this morning I was at my local bank and filled out a withdrawal slip.
(For you young uns, filling out a withdrawal slip means you walk into a building called a bank, write stuff out on a piece of paper and talk to somebody who hands you money. This is how a few people still get cash from their accounts. Also for you young uns, cash is paper money that you can hold in your hand. Some people use cash instead a chip on a card or a QR code that magically lets you buy things.)
Anyway, my writing was so awful the teller (person who works at a bank,) had to ask me to state my account number as she had no idea what it was.
I looked at the paper I filled out and understood her confusion. The numbers looked like lines all squiggled together. Except for three of the numbers where, in the number boxes where 8’s should be, I had drawn little ants!
I hate ants. Why on earth would I draw them on a bank slip? Is it because I had just found one despite having three visits from an exterminator?
Then the teller asked for my ID as she couldn’t make out my signature either.
“But Patty, “ I exclaimed, “you’ve known me since fourth grade! Remember when I won the perfect penmanship award?”
Her dirty look told me she did remember and that she was disappointed in how I’d let myself go. I showed her my license and got the money I was requesting but not before I bemoaned that my handwriting was now not handwriting at all but plain old chicken scratch- Bock! Bock! Bock, bock bock!
As if that wasn’t bad enough, not only was my writing the stuff of chickens, it had now become the stuff of bugs too. Ants for 8’s. What’s next? Beetles for O’s? Spider’s for 5’s?
It was all so depressing.
Or it would have been if I wasn’t so busy scratching away. You see, for days I’d been itchy everywhere. Somehow I’d developed a huge rash that resembled chicken pox.
I wasn’t supposed to scratch. Just like when I actually had the chicken pox, likely around fourth grade. Ahh… now I see a connection.
But fourth grade was fourth grade and I’m an adult now. It’s my body and I’ll scratch if I want to.
The doctors weren’t sure what this rash was but thought it might be stress induced. What could be more stressful than chickens and bugs? And the medicine they gave me wasn’t working.
A thoroughly reliable two minute Google search said that hives can be a symptom of MS and they can cause extreme itching. It also said that MS hives don’t come with a rash, which I had, but you can get a rash from scratching.
So what came first, the hives or the rash? The chicken or the egg?
Either way, it just seems to me that both my newly acquired horrible handwriting and my newly acquired horrible hives both must have something to do with multiple sclerosis.
Until my doctors and I figure this out there doesn’t seem to be much I can do. Guess I’ll just keep on scratching and keep on writing out bugs to pay my doctor bills.
I’m sure this too will pass. But for now it’s dinner time.
And if you don’t mind me, I’ll take the fish, NOT the chicken.
May 9, 2019
Professional Patient
No chemo!
Those two words are blessed music to my ears. As I go about this “living with MS” journey, and this “dealing with breast cancer” journey, the words “no chemo” are helping me through.
Though very fortunate, this latest diagnosis has brought new weirdness into my life and it hasn’t gone unnoticed.
First, the oncologist who told me that she was not recommending chemotherapy was beautiful, and friendly, and awesome (did you hear the “no chemo” part?) but looked to be about 16 years old.
As did the doctor who performed the second biopsy as well as the breast surgeon AND my new ophthalmologist. It was like they came from their own high school medical cheering squad and I was the awkward, acne covered 13 year old in awe of them. 
When did I get old enough to have doctor’s years younger than me????
This oncologist who told me “no chemo” didn’t let me off the hook completely; she said I needed a, GASP, colonoscopy.
Now, I know in the medical world one colonoscopy is nothing compared to the hell that I’ve been told is chemotherapy. Even if a colonoscopy is for old men and gross, I’m lucky that’s her recommendation.
(And don’t worry, I CANNOT imagine any scenario where I would blog about that test!)
My curiosity here is how did we go from breast cancer to colonoscopy? They are two very different parts of the body. I know she explained it, but it was all too much to take in, especially since the words “no chemo” were pleasantly reverberating in my brain.
Her explanation looked, to me, something like this-
Speaking of body parts, I know that I’m an open book but when did it become ok for people to publicly ask me about my body parts?
I was in my hometown and took my sister to do her laundry. While at the laundromat we met up with a guy we had known forever. His girlfriend is a breast cancer survivor, he had heard about my diagnosis and had been on this unfortunate cancer path before. He began to ask me about the treatment of boobs right there, in the laundromat! He was respectful and I do believe in sharing medical information, so I wasn’t offended. I just found it very, very odd…
Until I decided to go to Mass at my hometown church later that day. Walking into the vestibule I saw my favorite priest. He, too, had heard of my medical news and he too began to ask me about the treatment of my boobs, right there by the holy water font!! 
Ok, neither used the word “boobs” and their questions were intelligent and concerning, but how did my life turn in a way that lead me to talk about things like my boobs in public places?
It takes a professional patient to find herself in that position and I realized that’s what I had become.
When MS forced me to stop working, I struggled with what to say when someone asks me what I did for a living. I now had my answer; I was a professional patient.
I felt beyond qualified for this title. Perhaps, with the over 25 appointments thus far in 2019 alone, six just last week, I might promote myself to Executive Professional Patient.
Yes, I like that. It has a nice ring to it.
(Will my insurance pay for my new business cards?)
Observing medical weirdness is chief in my new job description so please allow me to share some more with you.
Next up, per order of the oncologist is genetic testing. This is not the genetic testing of TV commercials where you spit in a tube and suddenly you have millions of people around the globe claiming to be your long lost cousin.
I have enough trouble keeping up with the cousins I have now, why add more?
No, this is medical genetic testing and the first step was paperwork which involved filling in an online family tree. My family tree is less a gorgeous, well-shaped elm but rather a bunch of straggly bushes all clumped together. I would love to see the medical geneticist’s face when he received my form. 
I didn’t have any trouble sorting through my immediate family members but when I got to 2nd, 3rd, 4th cousins it became a struggle. Then the computer gave me an option of adding/deleting family members!
How cool is that??
I tried adding Ryan Gosling, Emma Stone and Ellen to the tree, but they didn’t RSVP to our next family reunion.
A couple of those fourth cousins did and though I tried deleting them several times, they still showed up.
For you readers who are most interested in my “living with MS” journey, this one is for you.
Due to MS, the left side of my body has always been weaker than the right. Because of this, my balance is off and high vehicles are harder to get into. I have a friend with a jeep and trust me, the sight of me getting in and out of it is not a pretty one.
But since the surgery my left side has gotten even more numb.
When my neurologist tries to stab me with his safety pin at my next appointment I probably won’t even notice until he draws blood. And if a friend drives me to that appointment, I may just need a forklift to get into their vehicle.
(Personal question- can you purchase a forklift on lay-a-way?)
My mom and our friend Annmarie came with me to meet the oncologist. She told us about her not recommending chemo and then said she wanted to examine me. My mom and Annmarie couldn’t get out of the room fast enough which I thought was a little rude, especially of my mom who claimed to have changed my diapers back in the day.
(I don’t think she actually did. I think I was such a good baby that I changed myself.)
Anyway, after the exam I went out into the waiting room where my mom had a huge pair of scissors in her hand and was chopping away at the doctor’s plants!
This seemed strange. Annmarie said she had asked for the scissors so she could take a clipping of the beautiful spider plant home, but I think it was really that she was trying to lower some of my copays with her horticulture skills.
Finally, I would be remiss in my duties as professional patient if I didn’t share this bit of medical oddity, courtesy of Annmarie.
For over a week she claimed she smelled cigarette smoke everywhere she went; to her job, to her gym, to the oncologist’s office with me, everywhere. Annmarie is not a smoker and the smell was so intense she often thought she would pass out from it.
Or at least throw up.
“Are you sure it’s not a doggy smell? You do have four dogs.”
“No, I know it’s not a dog smell. I know dog smells. It’s cigarette smoke.”
I wasn’t so sure.
Two of her dogs were new, perhaps they came to her with a nasty habit? If so, where were they getting the money for cigarettes? Rumor has it that they are $10 a pack now.
This bothered Annmarie so much she did the wise thing and searched for this symptom on the internet.
Turns out it’s a thing.
Who knew?
It even has a name, phantosmia, and its causes can range from an allergy to a brain tumor. That news had my friend running to her doctor and after he stuck a scope up her nose, eeiiiwww, they diagnosed her with a sinus infection.
I’m not so sure.
I think her male dog might be a Marlboro man.
Well, friends, one of the perks of being a professional patient is that you’re allowed regular rests. Don’t worry, I’m sure I’ll have more medical observations in the future.
In the meantime, I know many of you are professional patients too. What medical oddities have you witnessed? Please share in the comments below or post your own story on the Giggles page.
April 10, 2019
Multiple Sclerosis and Lent Collide, Again
Hi Friends!
Excuse my slight laziness this month as I repost an old blog. This is ironic as this blog is a little bit about not being lazy.
My life has changed a bit in the years since I first wrote this, but the sentiment remains the same.
Due to Holy Week, this blog has a spiritual tint to it. I hope though, that even my non-believing friends will enjoy it from the aspect of how it incorporates another one of the elements of living with multiple sclerosis.
And really, how can you not believe in a higher power? I mean, God is freaking awesome! The sun, the moon, the Earth, the oceans and on the eighth day he created the Rolling Stones! How can you not love the creator of all that!! Only someone that cool would be capable of creating Keith Richards and keeping him around past his over ten lives thus far.
But no matter what you believe dear readers, I wish you great health and many, many laughs always….
I think I messed up the Lent thing. As a Christian, I was excited about the approach of this time of year. We use this time to grow closer to God with prayer, almsgiving (does trying to make people laugh count as almsgiving?) and fasting.
My goal was to take advantage of this opportunity. I saved change to put into the little cardboard box that was our church’s mission project to support Catholic Relief Services. I even put in quarters. When it was time to turn the box in on Palm Sunday and it seemed a little light, I even took some change out of another jar where I had been saving for my Lions Club.
Speaking of my Lions Club, I also fed the crew of a local Habitat for Humanity project in our club’s name. I didn’t have time to get fellow Lion’s to help me but that was ok as it was supposed to be a small crew.
The numbers increased however and thus it was that my fatigued MS self was slapping together ham and cheese on a windy morning for hungry construction workers. And, unfortunately, as far as I could tell, not a one of them was single!
(Not that that had anything to do with why I was there of course, it was about almsgiving.)
When two fellow Lions asked me to help them clean the God given beach, I did put a stop to that. Really, how much almsgiving can you do???
For the prayer portion of Lent, I obtained many books about Jesus and set to grow in my relationship with Him. It worked; I have enjoyed a lot of what I read.
But here is where MS screwed me up. My brain takes much longer to process information. So, while I was reading all of these great spiritual works, I was taking up a ton of time in my already pretty crowded with exhaustion, day. That left no time for the things I should be doing for my general health.
Suffice to say, what I wound up unintentionally giving up for Lent, was working out with my Wii Fit. Officially, I gave up casual reading for Lent in favor of more involved spiritual material and was planning on curbing my sweet tooth. But before I realized it, I was fasting on getting exercise and I am not sure that counts.
With MS there is so much you should do and so little energy to do it in. With Lent, there was so much I wanted to do and only forty days to do it in.
(Ok, technically, you don’t have to stop the prayer, almsgiving, fasting routine just because Easter arrives, but having a time table sure helps to keep you focused.)
That is when I figured out where I went wrong. Focus is the key word.
There are always going to be more things I want to do and more things I have to do, and I will always have to walk this MS balance beam of energy supply. Some days I may do it well, other days not so much.
But if I put God first, maybe I won’t have to balance Him with other things. Not even with MS. Maybe Jesus IS the balance beam of energy. With Him first in my world, everything else will fall into place, even my Wii Fit, after it gets over being mad at me. Perhaps I will bring it an Easter basket….
Here’s the other thing I learned, as it says in scripture, “it’s never too late to start all over again.”
Wait, maybe that isn’t scripture, maybe that’s Steppenwolf. I will have to check my notes. I have also really been into 70’s music lately.
The point is, every day you just have to give life your best shot. Wait, shot is not the right word. Jesus is all about peace and love, not violence-no shooting…
Ok, let me try a third way. We are humans and as humans we are total screw ups. But screwing up isn’t always bad if we can learn from our mistakes and keep our focus on what is right and what is good for us.
And, no matter how hard you try, you can’t use Lent as an excuse for not exercising!
Thank you to Healthline for naming my blog as one of the 20 Best MS blogs for 2019! I’ve had the opportunity to work with many of these fellow bloggers and I must, I’m humbled and honored to be among them. Check out the full list here Healthline top 20 MS Blogs of 2019
Happy whatever you are celebrating today!
March 22, 2019
Cancer Trumps MS
Or, how I’m spending MS Awareness Month
See what I did there, my political friends???
Cancer and Multiple Sclerosis are both terrifying illnesses with mixed prognoses depending on many factors and each individual patient. Still, I don’t think too many people would disagree if I were to say that cancer, posing the most immediate risks and trauma, does indeed trump MS, especially if surgery is required.
My surgery was on 2/28/19. Being aware of the impending surgery meant that I was less aware that the day following my surgery was the beginning of a very important month for MS. I don’t think I can be blamed for this too much as, with the support of my neurologist, I had temporarily stopped my MS meds, leaving fewer pin pricks to remind me, (‘pricks’ being a good word for them,) from my injections.
And though I tell you I was more aware of the bilateral mastectomy surgery, I really wasn’t. People said I was taking it all so well but in retrospect, I think I was just in denial.
After I had been stripped and dressed in operation appropriate garb, it was when I was being wheeled into surgery that I suddenly understood what was about to happen.
Holy Crap, we’re really doing this.
I planned to back out once in the operating room, which looked freakishly like the inside of a space ship. I attempted to butter up the surgeon by telling her what I thought was a funny story. She didn’t laugh and before I could say, STOP- THIS IS TOO INTENSE. LET ME OUT, somebody put an oxygen mask over me and that’s all I remember.
Many hours later, an obnoxious nurse was yelling at me.
“Yvonne, wake up. You’ve had surgery and you’re coming out of anesthesia.”
Thing is, I don’t think I was coming out of anesthesia. I think I was properly in a comatose, comfy, pain free, anesthesia zone until the woman in scrubs started yelling at me.
Anyway, they wheeled me to a room, and I spent the night and most of the next day in appropriate, “post surgically having major parts of your body removed” pain. All was as expected.
Until late on the second day, which happened to be March 1st.
(Was I asleep through all of February 29-30th?)
Not getting the attention it demanded, and not to be out done by something as trivial as a bilateral mastectomy to remove cancer, MS was all in. Not only did my back, chest, and arms roar with agony, so did the rest of my body. And it was that horrific, flu like needles and pins pain that MS is famous for, combined with those sudden “sharp like being stabbed” pain. And for good measure let’s ramp up your bladder issues while we’re attacking your WHOLE body.
It was like MS was saying, “cancer, puleeeze- I got this body and I got this month. Stop being a whiner, I’m in control here.”
I accepted the surgery pain. And after 9 years, knew I had to accept that MS was going to show up as it refuses to be left out of anything medical. 
What I barely survived was the disdain I received from the residents, as if I was just a wimp or was out drug shopping for a future side deal.
“It’s a tough surgery.”
“We can add a little more to your IV but sometimes you have to ride things out.”
“I know, I know it hurts a bit, doesn’t it?
For the record, this was a small group of doctors who had never met me before and just happened to have the misfortune of being on my floor at the start of MS Awareness Month. It was one of my actual doctors who figured out the problem when he asked, where exactly does it hurt? I said everywhere and then began to list where, exactly, was everywhere.
I think it was when I got to my eyelashes, my teeth, the new strand of gray hair hanging down over my left eye that he got the gist and got me some different meds and the beginning of relief.
Not complete relief of course, there was still that cancer surgery I had to recover from, but it got better.
I’d like to think I spread some MS awareness by helping hospital residents realize that MS is insidious, stress can lead to flares, six hours of surgery is very stressful to your body, and, most importantly, of course MS is going to show up at the start of MS Awareness Month, it’s what the month’s about!
All told, the recovery is going well. My plastic surgeon is pleased with his work and said he thinks when all is done, I’ll have a nice shape.
I think he’s a boob man.
Not really meI was made aware of some other things within the month. Like, if at a post op appointment your doctor tells you to keep your scar covered and hands you surgical tape, you should use that surgical tape for that purpose.
How was I supposed to know it wasn’t for keeping track of which casserole dish came from which friend? I didn’t have masking tape- what else was I supposed to do?
How come they don’t list masking tape as an item you should have on hand after surgery- bandages, healthy foods, basin and sponge for sponge bath, grabber, masking tape. How else are you supposed to remember that the burnt tuna casserole dish that was a little too fishy came from your friend Elaine and not your friend Eileen? The surgical tape helped with that.
I learned that when you break down and buy a grabber you should buy 2 grabbers. You’ll need a grabber to grab your grabber when you drop your grabber on the floor.
Though the blood pressure cuff always makes me want to pass out and I absolutely hate it, I didn’t mind these leg cuffs they hooked you up to in the hospital. They didn’t get that tight and they’re supposed to keep you from getting blood clots. Or so the nurse said. I think they were little leg massagers. At least if your legs felt good, maybe you could ignore the fact that your torso felt permanently stuck under a cement truck.
I loved the leg no clot things so much I thought I would buy them for home. I went to Amazon and typed “personal massagers” in the search bar. That didn’t work out quite like I expected as the link directed me to massagers for other parts of the body.
Next I typed “hospital leg cuff thing-a-ma-jig” into the search bar and nothing came up.
Then I took a nap and forgot all about it until now, where I’m too lazy to care anymore.
In an “only in a small town” type of way, I discovered through Facebook, where all things are accurate and true, that a friend of mine was not only in the same hospital but was in the room above me! Had I known right before being discharged we could have had a blast-perhaps by banging our IV poles against the ceiling for me, the floor for her.
Maybe we could have learned how to beat our IV’s in time with Doctor My Eyes or something.
Oh, wait, she’s a metal fan, we couldn’t do that.
It would have to be a Motley Crew’s Dr. Feelgood.
Anyway, I know there are privacy and HIPPA laws, but we spent our entire time in the hospital in misery and didn’t even know we were in misery together. My suggestion is this, forget privacy, let’s make hospital stays social with a revolving list of who’s where and what type of hospital party we should hold.
March is almost over and each day I’m feeling a bit better. So, though you still have a few days to make your mark MS, I won’t have it. Health problems aren’t just about you, whether you like it or not, or whether it’s your special month or not.
This month, March 2019, though you tried, cancer trumped you for sure.
Thank you all for your support! I’m very grateful for each of you!!!
February 15, 2019
Hugs from the Doomed Jugs
Warning- if you are struggling with cancer, know someone who is struggling with cancer or have lost someone to cancer, you may not find this blog amusing. Please know that I’m not minimizing cancer at all. It’s just how I deal.
BUT, if you have kicked cancer’s ass, you may find this hysterical.
This cancer thing has gotten real. At first it was one little, new spot with a great prognosis. A little day surgery, a little radiation, no big deal.
That’s what I heard anyway. And what my multiple sclerosis brain heard. Cancer, no biggie. What’s there to freak out about??
Everyone said I was brave- how could I not be worried? I appreciated their compliments. I like being brave. I feel like I’m kicking MS ass, so why not kick cancer ass too??
But it turns out, I wasn’t brave- I was MS cognitively defunct. Cancer is scary you big MS dummy and this could really suck. 
Upon closer inspection one spot turned to two, day surgery turned to 1-3 days hospitalization and radiation is off the table and the dreaded C word is uttered. No not cancer, chemo!!
(How much cognitive damage does MS have to give you for you to be more afraid of the chemo word than the cancer word.)
But the chemo is not definite, both spots are still small, and the prognosis is still excellent. Things are just going to suck for a while.
Ultimately, I made the decision to remove both breasts and begin the work to get new ones. I dealt with this by thinking hey, free boob job! I never really liked my boobs too much anyway.
But when the brain fog cleared, I had to face the reality of how much poking and prodding and medical stuff was going to transpire.
(I may not be able to take a real shower for weeks! I don’t even know how to take a sponge bath.)
I think I liked the brain fog better.
Suddenly my jugs are in the forefront of my mind.
Last week at church I was leaving the ladies room and entering the tiny hallway outside of it. The elderly man in the hall didn’t see me and, in his eagerness to get of the way of the lady entering the hall across from me, he moved, swinging his arms and punching me right in the left breast. The one that is still somewhat ok.
Several days later I was trying to chop something and the knife in my hand flew up and came crashing down on the counter, just missing my right breast. If it hadn’t missed I probably would have saved my insurance company some money- do it yourself home mastectomy.
I swear I’m not making up either of these stories.
Still, I’m determined to face this challenge with humor and by doing all that I’m supposed to. I learned on my MS journey that it’s important to follow doctor’s orders but sometimes the orders are confusing. You have to decipher the meanings of what they tell you in a way conducive to your own treatment plan.
Here are some things I’ve discovered. For this list the doctor’s recovery instruction is in italics and my translation is in bold lettering.
No driving for 3 weeks
Limo service is a must!
This is when you need to rely on your friends
Party time!!
Ask them to bring you food so you don’t have to cook
Guys, pick up a pizza on your way
They’ll be happy to help
Hey Ben and Jerry, I’ll be here all week- whichever times work best for you.
And keep hydrated
Stock up on Pino Grigio beforehand.
A recliner can help with the healing as it will keep your chest elevated.
Time to buy new furniture per doctor’s orders! Will insurance cover a sectional with a recliner built in?
You need to rest and relax as much as possible, no strenuous housework.
Hey friend, would you clean my bathroom for me?
But Yvonne your surgery was six months ago.
Didn’t you see the note where I’m not supposed to do strenuous housework after surgery?????
(True story- I actually got of gym for 6 weeks in the 8th grade with one doctor’s note saying I had swollen glands. If you remember the horror of gym in the 8th grade you know what a feat that was. If I can manage that at age 13 who knows what I can get out of now!!!!)
All of this is to tell you that while I will kick cancer’s butt, I may be out of the blogging loop for a bit. I’ll try to post repeats here and there but don’t worry if you don’t hear from me for a while. I will likely be resting, reclining, and conjuring up all kinds of new MS weirdness with perhaps some cancer weirdness thrown in!
And don’t worry about me losing my sense of humor. True to the spirit of using humor to heal, some friends threw me a “goodbye to your boobs” party. One friend baked me this delicious boob cake, Hershey’s kiss nipple idea courtesy of her 16 year old daughter, and another wrote me a boob poem. So, for your amusement, here is a boob poem written just for me, and now for all of you.
Two Boobie or Not To Boobie, that is the Question
By Kristin Perry
A Boob by any other name is what?
Tits?
Maminhas?
Two ways to get black eyes if you run?
No.
They are a way to feed a child then and now.
And a way to entertain a grown up child.
But will losing them make a difference?
Hummm, think of the advantages…
No more “over the shoulder bolder holders” for a while.
You may get to decide what size you want.
No sagging boobies.
You don’t have to worry about rolling up and tucking in the boobs when you get to old.
And you can actually say you have balloons in your your body that you didn’t swallow.
But I digress…
You can do this.
You are strong, independent and a hell of a woman.
Boobs don’t make the woman,
They just give the guy a few more minutes to do his job.
One more thing friends-something I’m looking forward too as I recover is delving more into this anthology, When Bodies Break. I know it will offer a lot of inspiration and support as what I have read thus far has been fabulous!! It’s totally worth checking it out yourselves as it’s available on Amazon and all proceeds from the sales go to the Benaroya Research Institute. 
Thank you all for your support. You guys rock!!!!!!
January 11, 2019
About a Boob
With a title like that you probably thought this blog was about something juicy- perhaps even pornographic. Maybe R rated or at least PG-13.
Sorry to disappoint you my friends. I’m not ready for THAT kind of writing.
And while this post is about an actual boob, as in body part, as in, my right breast in particular, it may not be exciting as one would think a boob blog should be.
(But, come to think of it, another type of boob does come up later in the story if we use the other boob definition- a foolish or dumb person.)
On December 12th I was told that the very small, very new spot found on a mammogram was cancer. How ironic as this is the rough time frame of my multiple sclerosis diagnosis nine years ago. No more routine appointments in November!
Because it’s small and new the treatment options are positive and encouraging.
Warning friends, please, please, please don’t skip recommended cancer screenings-early detection makes a huge difference. I almost skipped the mammogram because I hate them. They are painful likely due to MS and I always worry that I will pass out with a boob still clamped in the machine.
The only reason why I scheduled this one was because the mammogram people kept calling me, as often and as intolerable as a time share telemarketer. When they finally caught me off guard, I figured I would just go to shut them up. And kudos to them for their obnoxious persistence.
Here’s the weird thing and the part about MS awareness. Once I heard the words small and new, I wasn’t as upset about this diagnosis as one might be. I didn’t even break down.
What did upset me was the thought of future frustrations and the overall overwhelmingness of treatment.
(Yes, I know overwhelmingness is not a real word. But I also know that MS has its own vocabulary.)
I did fine meeting the doctor who would do the proposed lumpectomy and went off skipping to the lab for my blood work with hardly a care in the world.
The problem came on the day of the MRI.
I didn’t sleep well the night before but not out of concern. I’m an MRI expert and was not worried at all. If you regularly survive two hours in the tube with your head locked in a cage, a little lower body MRI ain’t nothing to stress about.
But MS chose that night to have my bladder act up full throttle.
(First frustration-it’s been behaving itself of late so why that night?)
This meant I didn’t sleep which meant in order to drive to the MRI I needed to take some of my RX stimulant. But not take it with too much water because a full bladder making me all jiggly is not conducive to the body stillness required while in the machine.
On the highway and only 20 minutes before my appointment, I received a call from a boob (dumb person) in the MRI billing department informing me that my secondary insurance denied my claim and so I should be prepared to pay 20% of my visit; did I want to do that, or did I want to cancel the appointment.
Of course I wanted to cancel- who looks forward to an MRI? But canceling wasn’t a wise option.
She said all of this so casually, as if we were talking about a manicure or a spa treatment.
“Um, how much would the 20% of the visit cost?” I asked.
“I don’t know,” she responded.
“Why did my insurance deny it?”
“I don’t know.”
“Is it worth it to resubmit it?”
“I don’t know. Do you want me to cancel your MRI?”
Was this not a defective conversation? Did the fake tree lady from my last blog (see Defective Tree or Me?) leave her job at the fake tree factory and was now working in MRI billing?
I asked for more information. She said she would call me back.
She did, as I was walking into the building. I asked if I could come talk to her directly since I was already there, but alas, no, she was calling from a corporate office over sixty miles away.
She told me she talked to someone who talked to someone else who said they thought my part MIGHT be about $100. But they weren’t sure. They were surprised as this was usually covered but it wasn’t. Should we cancel or not? They needed to know.
I broke down then.
Big fat tears of frustration and indecisiveness and fatigue.
Big fat tears right in the lobby. Tears for the futility of preparing and saving my week’s physical and emotional MS energy to tackle this important cancer task.
I know in the normal world this is no big deal.
I know I’m lucky I even have insurance, especially as people aren’t getting their paychecks due to the government shut down.
I know I’m lucky that my cancer diagnosis comes with a lot of hope.
And I’m lucky that the nice MRI employee who witnessed my big fat tears, was able to reschedule me quickly and promised to follow up on the insurance herself. She also told me it was best to cancel that day as if they didn’t get to the bottom of the insurance problem it could continue and $100 could turn into thousands on this journey.
So, knowing all this, why the breakdown?
Because frustration is exhausting and when you live with constant exhaustion, more frustration handed down so casually from a voice on your cell phone can easily push you to the edge. Especially when that voice calls later that day to smugly say the problem was a wrong insurance code, “so it wasn’t our fault,” and the MRI next week SHOULD be covered.
(If I were to share my response to that call then this blog WOULD become R rated.)
Sometimes it’s the little things, not the big ones, that hit you the hardest, when you least expect it. And it can be the innocuous that actually pushes you over the edge, no matter how steep the cliff is.
In all of that “to have the MRI or re-schedule” commotion, I lost a glove. I didn’t love the glove, but a glove is a glove. And the tears fell again.
But it’s all ok.
My single glove and I can take it and we’ll keep kicking MS butt and now we’ll kick cancer’s butt.
But it sure does help finding the nice people thrown in among all the boobs.
FYI
Need a little chronic illness inspiration for 2019?
Check out When Bodies Break: How we survive and thrive with illness and disability, an anthology of 32 writers and their amazing stories. Hot off the presses and edited by the fabulous Cameron Auxer it is available on Amazon in paperback form for only $8.99! All proceeds from the sale of the book go the Benaroya Research Institute. And you might just recognize one or two of the many contributors!
December 16, 2018
Defective Tree or MS Me?
The Date- 12/8/18
The Mission- Get my damn apartment decorated for Christmas so that I can get into the damn holiday spirit!
It was later in the season than I like to be decorated. I’m not a before or day after turkey day decorator, but don’t like too to wait too long either. I had just been busy. Really, is anyone ever not busy?
So I felt the pressure and this particular day I vowed all my decorations were going up. I would not go to bed that night unless I was completely surrounded by festive holiday décor.
It was already 2 PM and I hadn’t even showered yet. Don’t ask me where the morning went- it just disappeared somewhere between waking up, say around 10:30, and the time suck that mysteriously arrives when I turn on my computer.
I had changed from pjs into comfy clothes so there was that accomplishment at least.
Anyway, I started with the biggie- setting up the new artificial, pre-lit tree I had bought back in September. I was a little stressed about this because I’m not known for being handy, even before my brain was attacked by multiple sclerosis which has killed most of my problem solving skills.
So I was pleasantly surprised when I opened the box and discovered that this tree was the exact same model I’d had for years before. No problem.
Except it was.
Specifically, I couldn’t figure out how to attach the top part to the bottom part. Assuming it was me, as it usually is, I fought with it for over 30 mins. Twisting, forcing, throwing, cursing and yelling to make the tree come together.
It was then that I decided the directions might help. Another 20 mins ensued of twisting, forcing, throwing, cursing and yelling.
Finally, I called the toll free number on the instructional booklet and got a very nice representative on the phone. After I explained the problem, she informed that it wasn’t me, it was my tree. The company had put the wrong top in the box with the right bottom. In short, my tree was defective.
Defective- flawed, shoddy, imperfect, inoperative, unsound, damaged. All adjectives that defined my new tree.
Interestingly, adjectives that often define me as well. Still, what a relief to know that this time it wasn’t a defective me but a defective tree.
Then the representative, in a very pleasant voice filled with lots of holiday cheer, told me not to worry, their trees are all under warranty.
What a relief!
“We’ll send you another top and your problems will be solved. It takes a while and you won’t get it until January but that’s ok as you’ll have it for next year!!!”
Is it me again? Am I the defective one for thinking that was a really defective solution to my problem that I vowed would be addressed by bedtime, whenever that bedtime might be?
I decided to trust my gut and asked for my money back. But no, their warranty only covered replacement of defective tops when you don’t need them. I hung up. Then I threw the whole thing back in the box and decided to return it, top and bottom, to Walmart.
This is a bigger deal than you might think. The closest Walmart is 50 minutes away. No, I’m not lying about that. 50 minutes! I live in coastal boonies.
We Cape Codders sacrifice greatly for the privilege of living in a place that has ten times more sharks than department stores.
But this was going to be resolved today, dammit!!
I made the drive and though I didn’t still have the receipt, Walmart kindly refunded my money.
“I don’t really need the money,” I told them. “I need a tree. I could exchange it. I would just have to open the box to make sure the parts fit together.”
“Oh we can’t do that,“ the Walmart clerk explained. “If we did that there could be total Christmas chaos everywhere!”
Again- defective me? It didn’t make sense, but what did I know? It seems the only thing I could do was take my refund, buy a new tree, take it out to my car, open it there, and return it if it was the same problem. Then I could buy another one, take it out to my car and repeat until I had an adequate, perfect, sufficient, flawless, unbroken tree.
That seemed too much to ask.
I don’t think I’ll ever be a flawless or perfect, how could I expect my tree to be? But I didn’t think it was too much to ask that my tree at least be whole, top and bottom and standing as strong as possible.
I took my Walmart cash refund and ran. Or drove, I should say. I drove the 50 minutes home stopping only at a grocery store where I picked up a small, imperfect, live table top Charlie Brown tree.
Like me, it’s is a little bit defective. But it’s still standing. And breathing. And its parts are still together.
I brought it home and did complete my decorating mission. I think it was about 11 when it was finally done. BUT, the next morning, I was happy to wake up decorated. Defective maybe, but ready for Christmas.
Happy Holidays my friends!! Wishing you and your families a very happy and healthy New Year, whether you may be defective or not.
November 16, 2018
An Aging Rhapsody
Please indulge me with an MS blog that’s not exactly about MS at all.
My friend Kristin and I were going to dinner and a movie. We’d been eager to see Bohemian Rhapsody since the first trailer appeared for it, something like 5 years ago.
We decided to do the movie first because we’ve aged a bit since our teen years and God forbid, we stay out later than 8 PM on a week night.
The idea was just unfathomable.
This was a big deal for us and so after shelling out a couple of bucks for the tickets, we shelled out thousands of bucks on all the fixings- popcorn, soda and candy.
We took our loot into the darkened theater, me trailing Kristin while trying to balance my jacket, my purse, my drink, my snacks, and my overall clumsy body.
Balancing even myself these days ain’t easy so this was quite the feat.
(Hey, what do you know, I managed to throw a bit of MS into this post after all.)
But in the theater, I stopped, panicked and tried to whisper as Kristin headed towards seats.
“Psst”
“Pssst, Kristin”
“Kristin”
“KRISTIN!”
When I finally caught her attention, I told her I couldn’t go on.
“What? Why?” she asked.
“Because of them. Look at them. What are THEY doing here?”
I was referring to three very elderly looking women sitting right in the middle of the stadium style seating.
I don’t believe I usually discriminate based on age, but these folks looked really, really old to me.
What could my friend and I possibly have in common with these ladies?
What were they doing at the same movie as us?
How could they possibly be interested in a movie about a classic rock band that was popular back in the 70’s and 80’s?
Did they think the Queen the movie was based on was actually in England? Ok, technically this Queen was from England but perhaps there was a different Queen from England they had in mind?
But seriously, wasn’t there a Lawrence Welk or Frank Sinatra movie they could go see?
Kristin told me to get over myself and lead me to some seats, way too close to these seniors.
I was still concerned.
Perhaps Kristin and I had ventured into the wrong movie? Now, that’s something MS would do. MS would lead me into the wrong theater and I could watch Lady Gaga and Bradley Cooper sing away for 30 minutes and wonder when the hell the film was going to get into the Freddie Mercury part.
I’m not saying women of a certain age aren’t allowed to have fun; they just can’t have my type of fun.
The movie started, and it was quite good. And our slightly older neighbors stayed and watched it with us. But I remained suspicious. Especially when they refused to sing, chair dance or even lip sync when the title song played.
I mean, if you’re breathing, it’s literally impossible not to join the band in singing this song.
Let’s test this-
Scaramouche, Scaramouche
Will you do the Fandango
Thunderbolt and lightening very, very frightening me
Galileo (high)
Galileo (low)
Galileo (high)
Galileo (low)
Galileo figaro magnifico
See?
You sang that, didn’t you? You know you did. You have no idea what it means but you sang it with same intensity you use for the National Anthem at a football game.
After the movie we wanted to treat ourselves a bit more. We wanted to eat at a really nice, classy restaurant.
Walking into Olive Garden I saw some other older folks hanging out in the lobby.
That’s it, I said to myself, if these are the same women I’m not going to this restaurant! No way! I can’t possibly have that much in common with ladies that much older than me. We’ll have to find a Chuck E. Cheese or something.
But these folks weren’t the same ladies who had watched the movie with us and Kristin was a little over my self-imposed drama about my own aging concerns.
We ordered, and after sampling the free wine sample of the day, I ordered an $8 glass of what was probably a $4 bottle and pondered some more.
Quietly, so Kristin wouldn’t yell at me.
The thing is, I’m blessed to live in a really nice housing complex that is designated for people of a certain age. I got in as they have a few spots for the disabled. And when I join my neighbors for weekly trivia it shocks me when their brains kick my MS fogged brain and beat me. (Except for Classic Rock- that category I own. Too bad it’s one that almost never comes up.)
So perhaps I’m just super sensitive to my own aging. Especially when multiple sclerosis often feels like I’m aging way faster than I should be. I cling to my rock and roll memories as a way to feel young. So, who am I to judge if folks older than me have young spirits as well?
And who am I to begrudge them for having a good time, even if I think it’s a good time that should be reserved for my own age bracket, not for brackets way, technically older than me. Hopefully, when I reach their age, I’ll still want to be cool and will go out to cool movies, even if there are people in the theater who think the movie shouldn’t appeal to someone of my age.
I just have to stop being such a persnickety pain in the butt and maybe by then I will have stopped stressing over inane things.
BUT, and I say this with all sincerity, if I find myself at a movie that focuses on today’s music, say a biopic of the war between Nick Minaj and Cardi B, please, please kick me out of the theater!
Happy Thanksgiving my friends!!!
If you want to work off the turkey coma might I suggest going to see Bohemian Rhapsody and chair dancing the carbs away!!
October 29, 2018
Multiple Sclerosis is a F…king Thief
I bet you didn’t count the dots above and assume I mean that other word, F..king. But I’m talking about F…king as in freaking as in being freaky weird.
But multiple sclerosis is very sucky too so F..king does apply as well.
Those with chronic illness regularly talk about the things that said illness steals from them. With MS, those thefts vary greatly from patient to patient.
The ability to walk without assistive devices.
The ability to see clearly or speak easily.
The ability to live more than a few minutes without the utmost level of pain.
The ability to control your body as you should be able to control your body.
There are, of course, many, many more ways as well.
In this blog I would like to focus on a few less obvious examples.
The ability to do simple math is one. Since math was never my strong suit the few skills I have, I need. So when people don’t understand what I mean by cognitive difficulties and at the same time don’t understand why I may just as easily leave a 6% tip or a 60% tip on a lunch tab it’s because of the theft of my math skills.
I’m neither cheap nor generous- I’m just completely confused.
Recently MS has robbed me of my ability to spend quality time with children.
For a long time I had the pleasure of hanging out with the absolutely cutest neighbor ever! This adorable 9-month-old would spend every Monday morning with me and I looked forward to his visits. But about only a year later he was almost 2.
Who could have predicted that?
21 months old (and yes, I just used a calculator to look that up,) meant he was now a bundle of energy I couldn’t keep up with. Never mind the quickly getting up off the floor thing when he was headed towards something he shouldn’t be headed too.
(Why the hell do kids insist on playing on the floor? Why can’t toddlers sit calmly at a table and quietly do word search puzzles like the many little old ladies I know, aka me.)
It is f..king f…king sucky.
Never a mother but always the coolest of cool aunts, MS has affected that as well. On a recent visit with my 2 great nephews, fatigue had my patience at an all-time low. Always a master at diffusing child arguments I let the 2 little guys battle it out themselves over who got to carry the empty pizza box to the trash and who got to pour their cereal into their bowl first. I love, love my nephews and love, love spending time with them but when did I also start loving it when they went home? 
I know those who spend time with kids will say that happens to all of us, kids are tough, yada, yada. But I hit the limit 5 minutes in! That must be the fault of multiple sclerosis.
After experiencing flares and flu like symptoms that deeply hampered work trips and family vacations, MS has robbed me of the experience of flying stress free. It’s just not worth the trip if the airport and/or the plane make me feel miserable during and for days afterwards.
Another thing I know MS has stolen is the ability to know. I just bought new jeans. I bought them from the same company that sold the jeans I was currently comfortably wearing. I bought the exact same label and size. And when they arrived I tried them on and they fit perfectly.
Except they didn’t.
I tried to know if they fit and even though I tried I didn’t know that they didn’t. (If you have MS then you may understand what I mean.)
Turns out I wore them the next day and they were over 3 inches too long. How does that happen? And how did I not know it when I tried them on? Which leads to another chronic illness robbery, money.
Illness is f…king expensive.
And not just with expensive copays, expensive meds, expensive health products, and expensive adaptations. It becomes expensive when you have to correct your mistakes. Because I knew that the jeans were fine when they weren’t fine, and I threw the paper work away, I had to shell out $30 to get the sob’s hemmed or I wasted the $60 I spent on them in the first place. And money mistakes like that are not an isolated incident.
The missing ability to know is what so often frustrates and scares me. You may not be aware of this but here in Massachusetts there is a man with multiple sclerosis on trial for two counts of motor vehicle homicide. His defense is that while driving he had an MS flare that caused the crash that lead to these two deaths and to injuries to seven other people.
First and foremost, please allow me to offer my deepest sympathies to the families of those killed and to those who were injured. These people were simply having lunch one day when a car came slamming into a restaurant and their lives and the lives of their families and friends were horribly changed forever. It’s unfathomable, and I hope they get the appropriate justice they deserve.
But what makes me ponder is what is that justice? Did the defendant know that MS has affected his driving?
I still drive but have some trouble driving in traffic congested areas, specifically cities. I refuse to drive there as my brain is slow to process all that is coming at me at high speeds and if I’m not familiar with the area the last minute decision of when to turn where and what lane to be in at the time, all while cars behind me are honking as they have lost patience with me, causes me to lose confidence behind the wheel.
I know this and so don’t drive there. But are there other driving issues that I have that I’m not aware of? If I’m driving and I have a flare it’s unlikely that I will know it’s coming; will it impact my driving?
I do make allowances to drive safely but to give up driving completely will so alter my life that basic necessities will be stolen as well. No longer will I be able to regularly care for myself. If I felt it was no longer safe for people on the road with me for me to be driving I would stop driving. Should I make such a drastic decision without knowing if I need to?
And I’m not saying this is the situation with this particular defendant. I don’t know the complexities of the criminal case. Nor do I know him or how his MS affects him. It’s just that this trial has made me think. I can only hope that the judge and jury know what justice should look like here.
Basically, I’m hoping that they haven’t been robbed of their ability to know.
Update The defendant in the case was found guilty of negligence. Not knowing the specifics, I can’t tell you what the exact negligence is. I worry this is a bigger issue than my MS brain can sort out. People without chronic illness say we shouldn’t just give in to our illness. Yet, does this verdict mean we should further restrict our daily life in case MS does something we can’t really know it will do a head of time?
I just don’t know…..
October 25, 2018
Scary Brain Scary Movie, Once Again
Call it tradition. Call it writer’s block. Call it laziness, boredom or the result of today’s brain fog. But here is one of my most popular blogs, just in time for Halloween!
Get ready for your own horror movie marathon and I would love it if you answer the question at the end.
Happy Halloween my friends!
It is the afternoon and I am shuffling around my house, trying to focus. I have my lists; all the MS helpful tip books suggest lists.
There’s the to-do-this-week list.
There’s the to-do-before-Christmas list and the things-I-should-try-to-do-in-general list.
There is, of course, the things-I-should-try-not-to-forget list.
But the lists and lists were not helping me focus. Oh, I know, the dishes need to be done. I will feel better when I have finished that.
So I start with the dishes and realize I might have more motivation if I had music going. I dry my hands and head to the stereo.
But then I see my computer and try to remember if I responded to that important email I received this morning. Yes, I see now that I did but there are some more emails to read. I get overwhelmed with the amount of junk emails and chain emails coursing through my web account and give up, deciding to play FreeCell instead.
What is up with us MS’er’s and FreeCell? Every MS’er I know is addicted to FreeCell.
My meds are giving me an awful taste in my mouth so I get up to brush my teeth and drink some water. I see that I barely started the dishes and dunk my hands in the soapy dishpan yet again. And three plates and five minutes later the 8ozs of H2O has gone right through me and I am off to the bathroom.
How on earth am I supposed to drink eight more glasses today? I might as well move into my bathroom.
The fog in my brain continues. The only thing I can focus on is my lack of ability to focus. I am forever existing in this fog-like state.
Perhaps because Halloween has just passed I think of the movie The Fog. Figures. Leave it to me to equate my multiple sclerosis to a horror movie.
But is The Fog the right horror movie? I am wandering around lost in my own little world and not feeling quite right- almost zombie like.
Yes, zombies, zombies are a good description. I am an MS zombie for sure. I will likely stay like this until I fall asleep where I will be alive but dead to the world for at least ten hours. Then it hits- it is not The Fog but Night of the Living Dead.
Somehow thinking of my MS in terms of horror movies brings me comfort as I try to remember what it is I was supposed to be doing. Night of the Living Dead, that is definitely the horror movie for sure.
Or is it? Sometimes I just want to scream. Actually, I just want to scream a lot. Maybe my MS really is Scream? I have always been a Neve Cambell fan. But does the movie Scream completely reflect all that my MS is to me?
It likely depends on what my MS is doing on any given day. Often, it makes me think I am going crazy. I think of the classic line in Psycho, “she just goes a little mad sometimes. We all go a little mad sometimes.”
I remember all the hysterical mood swings and weird symptoms I experienced before I knew I had the disease. I remember hundreds of times of being convinced I was getting the flu due to the insane body aches, only to have them disappear, believing myself to be a hypochondriac. I remember the all the people in the world around me being totally off kilter but acting as though I was the one who was screwed up. Like when I had to go to my drycleaner’s several times in one week insisting that they had given me the wrong pants.
“Yes, they fit. Yes, they are the same color. Yes, they have the same fashion label and size label. But these pants have cuffs at the bottom hems. My pants don’t have cuffs. Yes, of course I would know if they were my pants or not. I will keep them as I need black work pants but one day soon someone is going to come in and say they have the wrong pants and I am telling you, I have theirs and they have mine. Feel free to call me when that happens and I will exchange them.”
My drycleaner and I had this little diatribe over and over. Funny how the other customer never realized she had the wrong pants. Yes, Psycho is the movie. That is the one that most describes my MS.
And it is appropriate and personal as when I was a teenager I had actually waited on Anthony Perkins at a candy store only ten days after seeing Psycho for the first time. My friend Heather worked at the store too and she was too freaked out to wait on him so it was left up to me. I gave him a whole extra ½ lb of penuche fudge so he wouldn’t bring out his knife and start swinging.
Yes, Psycho feels right.
Bathroom again, but first I stop to remove the pebble in my sock. But there is no pebble. What is that annoying feeling?
And that one, the sudden sharp, jab in my left arm?
And that one, the squeezing and releasing of my abdomen as if my stomach were in a vise?
And here are those weird ear noises again- has my body been taken over by aliens? That’s it, Invasion of the Body Snatchers. That is definitely the horror movie that best describes my MS! It all makes sense now- aliens have taken over and turned me into a screaming, psychotic zombie living in a deep fog.
Finally, having this serious question answered and finishing up likely my tenth trip to the bathroom, I try again to remember what I was supposed to be doing. Oh right, the dishes.
I shuffle back and plunge my hands into the now cold water. As I do so I feel awkward and completely out of sorts. I am tired and clumsy and blinking from the glare of the setting sun.
Funny how images of The Creature from the Black Lagoon begin to cloud my foggy, psychotic brain.
If your MS was a horror movie which horror movie would it be???????
