52 Weeks of Gratitude - Something I Love To Wear

I hadn't been diagnosed a full year when I accepted the challenge of taking over the creation of a local Walk MS Team.  Our team "No MS'ing 'Round" was a success!  We received a very generous amount of donations from coworkers and family.  We also had a large turn out for our team on what was a very chilly Western PA day (snowflakes joined in the day's festivities).

For those who wanted to share in the Team Spirit, I had tshirts made.  They were simple grey tshirts with "No MS'ing 'Round" on the front and that year's Walk MS design on the back. 

I LOVE these tshirts!  Yes, I say tshirts!  The printer somehow duplicated the order and even after selling additional tshirts and donating all of the money from them, I still ended up with 10 tshirts in my drawer.

These tshirts are comfy.  COMFY.  I would live in them if I could.  Sadly, my girls are starting to notice clothing choices and I've heard "MOOOOM, you wore that shirt YESTERDAY!" 
"No, I wore the one that is in the dirty laundry.  This one is clean!" I will reply.  But, that argument doesn't satisfy them and I am made to change shirts prior to going out in public.  But really, the love of the tshirts and the love of the girls are so close that it's a very hard decision.  Heck, there are days the tshirts will win - this Momma can be just as difficult and ornery as her kids.   

Beyond the pure comfyness of the shirt, I think it is also a symbol of how I have been able to fight the MonSter.  I am taking my MS and letting people know about it.  I am starting teams for the Walk MS events.  I am building a team - not only to support me on my Walk MS events, but to support me in my everyday life when I get a smidge down or simply want to vent.

When I'm feeling down, the comfort of the shirt is there . . .  the feeling of it, but also for the memories.  What a great group of friends and family I have that have stuck with me after my MS diagnosis!  This group of friends and family keeps me determined that the MonSter is not going to win!

The Dropsies

Just a few months after the official MS diagnosis, I made a lasagna.  The glass 9x13 pan was loaded with noodles, sauce, veggies, cheeses and meat.  I was so hungry for this comfort food, I didn't know how I would be able to wait until it finished baking.

Finishing up the top layer, I opened the pre-heated oven and lifted the heavy pan.

And dropped it.

Lasagna guts splattered all over the kitchen.

I stood there in shock.  The pan had landed right side up, and about half of the lasagna reained in the pan.  But the rest!  Oh my goodness!  The rest decorated the kitchen cupboards, the oven, the dishwasher, stove front and stove top.  A sea of red sauce covered the floor from the sink to the refridgeraor.

Slowly, I picked up the pan and tossed it in the oven.  I wasn't going to waste what still remained!  I wanted that lasagna, gosh darn it!

Shuttng the oven door, I looked at my hands.  WHAT had just happened?  Why had they acted like they were no longer in my control for those few seconds?  I was used to the tingling in m hands, and the weird numbness at th same time.  Still, I had never expeierenced this!  This wonky nothingness.  It was all I could think of to describe the feeling.  The feeling of my hands disappearing and coming back. 

Thankfully, I had a large dog who LOVED people food.  Hans came racing in and looked at the mess and his tail wiggling, he started in on the clean up. 

I grabbed a rag and wiped down the counters, cupboards and appliances.  By the time I finished, My Hansy had the floor clean.  I walked from the kitchen into the living room.  That is when I lost it.  I began sobbing and couldn't seem to stop.  I was SCARED!  I'd joined support groups and was so afraid of what this might mean.  Maybe it was the start of a flair?  Was this something that wold happen all of the the time?  Would I no longer be able to carry anything for fear of dropping things again?

I texted my husband and told him I'd ruined lunch and that we would need to scrub down the kitchen, even though I'd tried to clean it the best I could.

He wrote back and said that it was okay and he would make us dinner when he got home.  He let me know it would all be good.

I cried some more - out of fer and frustration.  Nothing I hate worse than not being able to control something . . . and the MonSter loves being the one in control

The lasagna ended up being a perfect, comforting meal.  The Husband finished the clean up of the lasagna guts and I was able to calm down. 

Fortunately, nothing further came from the incident.  Well, no physical issues anyway.  I do continue to have a fear of holding anything heavier or breakable. 

I still have times when I have the dropsies.  My cell phone - I seriously don't know how it has survived but it has.  I am also glad I drink mainly water as there have been incidents with that as well. 

But, all in all, I will take these little tricks the MonSter throws at me with the Dropsies game as it could be so much worse!

I just can't BE . . . .

Dear People Outside of My House,

I am sorry I have Checked Out of "being" for awhile.  Like those memes about not being able to human, I just can't BE.  No need to include anything after BE.  I can't be fun.  I can't be social.  I can't be energetic.  Getting up and doing even the littlest activity is beyond my capabilities right now.  And so, I just can't BE.

BEing a MOM.  Sigh.  It's hard.  I'm trying, but good golly.  There are nights I just want to shout "I DON'T CARE."  Seriously, 800 pages of school work a day times two kiddos, reminders about parties and field trips and spelling tests and the worry that my child is being bullied or other such issues which I make up in my mind because I enjoy worrying and fretting over stuff that hasn't happened, sigh.  Don't they know I'm having a hard time just BEing and the avalanche of papers each evening isn't helping me???

Yes.  I am overwhelmed.  Finances.  Insurances.  Bills.  Tuitions. 

I just can't BE.

So, if you don't hear from me for awhile, it's not that I don't love you or care about you.  I do.  I do care about you and love everything you do for me, but I.just.can't.BE right now.

Please understand and continue to BE (there for me) for when I'm ready again.  If it is too much for you, I will understand.  Not BEing someone who can be counted on the BE there for others isn't really that great of a trait.

Thank you,
someone who just cannot BE.

If you would only explain things better . . .

You may have read, from prior posts, that there are a few persons in my life (not really my choice, believe me) that seem to have an issue with exactly how I've dealt with the MonSter to this point.

These same persons seem to resent that I'm not bedridden and miserable.  They see to believe that, with the MS diagnosis comes abject misery.  I was actually shocked with how offended some persons were that I wasn't one step out of an assisted living facility due to having MS!  I don't know if they're just very uneducated in regard to the MonSter and unwilling to conduct even a smidge of research or if this was a great way to weed out the fake "friends" who didn't need to be a part of my life.

Yes, the following comments have all be said to me . . .



"If you would only explain things better, I could understand your illness . . ."



I'm sorry.  I don't necessarily understand my illness either.  This illness doesn't follow rules.  Just know I can be tired and not want to deal with anything, or I could appear totally normal.  Go to the MS Society website and do some research on your own.  I am not going to spoon feed an adult who should take the initiative to do something on their own.

"I just don't understand . . . you're fine one day and then act tired the next . . . if you were really sick, you would be sick all of the time . . . ."

Well, you see, MS is this weird little problem that doesn't make me get progressively worse (I guess here, I should state that I have RRMS, so it's not one that makes me decline with each incident I have).  Not only does MS not treat everyone the same . . . the little MonSter also says 'Howdy' in different ways to THE SAME PERSON! 

I would LOVE for MS to follow rules.  Seriously.  "You will get tingly hands and feet.  You will then get dizzy spells and have headaches.  You will have fatigue every Monday after pushing yourself to be "normal" on weekends  You will then start to have trouble walking . . . "

But NOOOOOO!  MS, that silly little trickster, comes and goes.  I never know what to expect.  So, if I don't know what to expect how can I share with you?

To add to that above comment, maybe you could read a little bit first instead of posting multiple pics of you and your "besties" out drinking.  I know education wasn't a priority for you, but I still think you were taught how to read. I know, from the excessive amount of time you spend on Facebook, that you know how to play on the internet and should be able to Google "What is MS?".  Heck, I've shared multiple links about MS on my page.  My friends have all read the articles and we've had discussions.  None of those friends have said I should be sick all of the time . . . Should I have put pictures of alcohol and various mixed drinks above the article to make you read them?

"You've really hurt us by not posting about how miserable you're feeling . . ."

Umm . . . . I really don't feel the need to give the MonSter more attention than it deserves.  1.  I don't have the energy.  2  I've always been a pretty private person.  3.  I know you enjoy whining, but I don't.  I enjoy finding the positives in everything when I can.  4.  I'm sorry that misery loves company, but you'll have to look elsewhere, because (though MS can get me down) I'm not miserable.  5.  If you really want to know how I'm doing FOR REAL, call me.  Maybe I really am having a bad day but don't want to bring others in my life down.  My friends reach out to me with phone calls, emails, texts and cards.  They know how I'm doing and their attention has been a great comfort when I am having a bad day.

"By not telling us how really sick you are you're actually lying to us all . . . ."

So, you see, I am one of the very fortunate persons who has been diagnosed with MS.  My getting an MRI was a fluke since we thought I just had an eye infection from a scratch.  From that happening to the spinal tap and MS diagnosis all in 2 months, it's unheard of!  I've never had an ER visit, I have never had emergency calls to my neuro.  I may walk a little slower and have battles with fatigue, but again, I am so, so very lucky and in no way "really sick". 



Squish Squash!

You ever listen to some of those "side effects" of advertised medicines?  Some appear so much worse than what the medicine is for!  I especially like the ones that advertise the side effect of death.  To me, a side effect is something that can be stopped by no longer taking a medicine . . . death (to me) seems a smidge worse than a side effect.

I am currently taking a medication to help battle my MS.  The official side effects include:
* redness, minor pain, swelling, irritation, or a hard lump where the injection was given
* warmth, redness, or tingly feeling under the skin
* weakness, dizziness
* white patches or sores inside your mouth or on your lips
* joint pain
* nausea, diarrhea
* muscle tension or stiffness
* runny nose
* changes in your menstrual periods; or
* increased urge to urinate.

Weighing these against some of what MS could do to me, and wanting to prolong my "normalcy" for my girls had me signing up to put chemicals in my body.  I didn't care about the success rates and how medicine a had been on the market for this length and had such and such percentage of relapse.  I mainly wanted a medicine that didn't list "death" as a side effect.  So I chose the meds I chose - and I also chose it because it didn't seem to have negative results with my Hashimotos disease (oh, I didn't tell you I also had that?  I do.  It's a pain.  Period). 

Then, I had my first yearly appointment around a year after having been on the MS meds.  Long story short, I had to have a biopsy done and a few rounds of acid treatments in a very tender and private area.  Fortunately, the cells were not cancerous, but I was told that MS meds raise the chances of cancer.  WOOT!  HOW EXCITING!  Trade MS flares and progressive physical declines for chemo?  SIGN ME UP!

Sarcasm aside, I was a little upset to have not heard this before.  Doing research online also gives mixed results.  About half of the articles state my form of medication actually decreases rates of cancer whereas the other half state it increases e chance of cancer.

So, I just shrugged and said "hey, it's life" and moved on.

Then, this late summer and early fall, I started having "soreness" on the outside of my left breast.  It wasn't all of the time.  I put it down to PMS, working out, moving the wrong way, etc.  Then, it would go away and I would forget about it.

Then it would come back.

And go away.

Then, October arrived with its Pink Out.  The girls got to wear cute pink bows for cheerleading, and carried cute pink pom poms.  And the news had tons of breast cancer stories, including a story on a very rare but dangerous form of breast cancer that can't be detected by normal means. 

This article was aired during one of the evenings where the "ache" was making itself known big time.  But . . . . I really didn't think more of it.  I mean, we'd been doing our plank challenges each night, so who was to say it was breast cancer instead of just bad form while planking?

Then, I woke up in November and the ache was THERE.  It was not something I could forget . . . it made itself known from the time I woke up to the time I went to bed. 

My 91 year old gram was scheduled to have a mammogram, so I decided I needed to try to get in for one, just in case.

My self exams weren't finding anything other than WOW! TENDER!  So, I was eager to get in to the doctor so he could tell me it was all in my head . . . . or that I had mastitis or some other sort of infection.

But, no.  We needed to get me in for a diagnostic mammogram and ultrasound.

I only had to wait a week for that fun - a week without my normal cup of tea each morning.  A week without my daily chocolate fix.  And (it turns out) a week of full on PMS.  it's a wonder my family and my co-workers survived.

The mammogram was NOT painful.  Not in the least.  It might've been the two extra strength pain pills I had within an hour of the exam . . . . or maybe it was the fact I am so overweight that there was a lot of fat to squish?  Whatever the reason, the mammogram was almost anti-climatic in the painlessness of it. 

The mammogram was reviewed while I sat in my hospital gown knitting scarf (you can get a full scarf down between all of these fun tests - fyi).  The results determined I had dense breast tissue, but because it was my first mammogram, they decided to continue with the ultrasound and check out the lumps on the outside of my left breast.

The ultrasound hurt worse . . .  but it was only b/c of the continued tenderness of the breast and not the exam itself.

I got to take a short nap while that ultrasound was studied. 

The results - I have dense breast tissue.  But - because this was my first ultrasound and I have that denseness, I have to go back in 6 months to ensure nothing is growing or getting all bad in there.

I still don't know if the MS meds have a hand in these new problems, but the fear is in the back of my head as I make lifestyle decisions, including types of foods I consume.  They might not be related, but I really think it's a good idea to do everything I can to stack the chances in my favor  . .. .

Pictures

I take pictures. 

Lots of pictures. 

Pictures of everything and anything.

I take these pictures so I can remember.

I take these pictures so my girls remember activities they participated in with me, their Mom, should MS rob me of that ability as they grow older.

I take pictures to celebrate and rejoice in each moment I have on this planet, no matter how seemingly mundane!

Again, the MonSter has affected this part of my life. 

I fear there may come a day where the MonSter steals my memories.  I fear there many come a day when the MonSter takes my ability to be an active part of my daughters' lives.

So, to thwart him, I take pictures.

Just my little way of saying "Take that you mean jerk!  MS will NOT win this battle!"

Three Years

I've been living with the MonSter otherwise known as MS for a little over 3 years.

Three years of daily shots

Three years of trying to accept that there is something wrong with me, when many times, I feel "normal."

Three years of anger, resentment, frustration and denial.

Three years of going days without remembering there is something wrong with me and then pushing myself a little too hard and being stuck in bed for an entire day.

Three years.

I know the basis of MS.  I am in support groups.  I am a Team Captain for WalkMS activities.  I wear MS clothing to increase awareness.  At the same time, I still do not know the limits of what the MonSter will or will not permit me to do.  I was living in fear, at first, that I wouldn't be able to continue being a Mom.  But, I'm starting to realize I can do most everything, within reason.  Sometimes, I just have to be a little pickier as to how many activities I can do in one day or one weekend.  Sadly, I still stumble and have to have recovery days because I didn't realize combining two activities would totally wipe me out.

Three years.

I try to raise awareness of MS.  But, I don't make every Facebook post about my little MonSter.  I don't spend every minute thinking of MS and how it is affecting me each moment of every day.  So, guess what, that means I may have days where the MonSter doesn't factor into my daily existence.  I'm not trying to keep it a secret, I simply do not feel it is necessary to walk around with "I HAVE MS" tattooed on my forehead.  So, I may walk a little weird, have tingly hands, be afraid to carry something, walk into walls, have vision issues . .  . but that is part of me.  It is, again, not something I need to remind everyone of every two seconds.  Don't get upset with me.  I am still adjusting.  And I will NOT let MS become the focus of my life.  If you don't like that concept, please, click on the "next" button at the top of the page and enjoy the next blog that comes up.

Three years.

My gosh!  I have a "disability"!  I had to mark that on form the other day!  I don't think of myself as having a disability in any way!  Mind Blown! 

Three years.

Yes, I have been turned down for various types of supplemental insurances because of this condition.  Queue the anger and bitterness as well as the frustration when I FEEL NORMAL!

Three years.

I am a baby when it comes to fighting the MonSter.  I've only been officially diagnosed for three years.  I am one of the fortunate ones with MS.  Unless I let you know, you don't know there is something wrong with me.  I have spent MUCH of the last three years counting my blessings and finding the positives in each of the situations that have presented themselves to me.

Running at 2.0 - Life with MS

One day, my friend and I were chatting on Facebook.  It was just after I had received my official diagnosis of MS.  I still didn't know the boundaries nor was I really accepting that I might have to slow down. 

Oh heck, I'll admit it - I was in denial.  I thought I was still normal and just "tired" because I'd been working too hard (we were on mandatory 10 hours overtime at work and I had two children under age 5).

I was complaining about how I couldn't get in a good work out that am.  I had jumped on the treadmill and started my warm up.  but, I couldn't find the energy to even really do a warm up.

So, I walked.

Then, I started feeling guilty for walking as I was used to revving up to at least a walk at 4.0.  Because of the guilt, I increased the treadmill's speed, but I couldn't do it.  At 2.0, I felt like I was running.  You know that full out running where you legs no longer feel connected and you start to fear they're going to tie themselves in knots like they do in cartoons?  Yah.  2.0.  The speed where, if you're not careful, you're actually walking backwards because you're going so slow.

My friend finally stopped my rant with the simple "Well, you have MS."

That, my friends, is when I began to accept the MonSter.

There are days when I can jump on the treadmill and do a brisk walk of 4.0 to warm up.  Other days, the MonSter is active and I'm running at 2.0.  I've accepted that there is no rhyme nor reason to how my workouts go . . . I've come to use this label for my every day life as well.  When I tell my friends it's a 2.0 Kinda Day, they know I'm feeling a little "off" and they seem to have a little more patience with me than on my regular days.  Thankfully, I don't have to label too many of my days as being a 2.0 Kinda Day.

So, let's hope we're not always running at 2.0