This’ll Cure Ya!

This morning, while scrolling through my Facebook feed, I kept coming across a story titled, “Study Accidentally Finds Chemo Makes Cancer Worse.”  Hmmm…sounded interesting, so I decided to give it a read.  A rather disappointing read, I must say.  There really aren’t enough facts to back up this claim for my liking.  I’m an obsessive researcher, so when I am reading an article that is supposed to have concrete evidence of scientific findings, I expect a lot of info.  This article (and its links–the ones that will open, that is) lists a bunch of vague findings, without much info on the study groups, percentages, or other things that I would consider to be instrumental to this type of claim.  (To its credit though, the article does have some percentages and good info on all-natural remedies for cancer.)

But this post isn’t really about the article.

One of the people who shared this article decided to give his own little speech about cancer, the dangers of chemo, and how we should NEVER go to the doctor, but instead use all-natural remedies to cure our ailments.  He went on to degrade those who use medicinal treatments, alluding that those people are ignorant and uneducated.

Ummm…excuse me?  Oh, I didn’t realize that you were an expert in the field!  When did you get your medical license?  Oh, don’t have one?  Well, what type of nutritionist certification do you have?  Oh.  Well, what about holistic certification of some sort?  <crickets>

Look!  It's an expert!

Look! It’s an expert!

This has become a huge pet peeve of mine.  Not that he shared the article.  Not that his personal opinion is that drugs are bad and all-natural remedies are good.  Not that he would choose for himself that he would “never” go to a doctor.  No, what irritates me is that he had the audacity to tell others how to make their personal medical decisions, and then to insult them for choosing a path different from the one he would take.

From the moment that Multiple Sclerosis has become a part of my life, I’ve been sent a barrage of articles, all telling me how I can cure my MS.  Now, let me start off by saying something really important: I actually enjoy reading articles about alternative treatments, breakthroughs in the medical field regarding MS, and personal stories of others who are dealing with this disease with some level of success.

I also appreciate the people who send me articles out of care, concern, and love.  But, some people just aren’t like that.  I have gotten some very condescending, judgmental, know-it-all remarks from people, and to be honest with you, I’m fed up.  This has become a huge problem for me, as I’m sure it is for many who are severely ill or diagnosed with a chronic illness.

Since 1995, there has been a claim that aspartame can cause MS, and within the last 6 months, this claim has again become popular.  I have been sent many articles regarding this, some saying that aspartame can cause MS and others stating that aspartame use can mimic MS symptoms.  (Okay, I’m open to those theories, even though there are countless other articles proving these claims false, some from the most respected MS sources out there.  But, who knows?)  Now, most people who sent me some form of these articles did so with a generic caption, such as “Read this and thought of you”…”Don’t know if this info is true but thought you’d like it”… or even a simple “FYI.”  I appreciate those people!  They saw something that could be helpful, and I appreciate that they thought of me and took the time to send me these articles.

However, one person sent the article to me, with a very lengthy commentary about how I should stop drinking diet drinks and how I should drink just water.  It went on and on and on and–you get it.  But, here’s the kicker: this is a childhood friend who I haven’t seen in about 20 years.  So, what makes her the expert on my drinking habits?  If she knew me at all, she would know that I despise diet drinks, I don’t buy soft drinks for my house, I only occasionally drink soft drinks when we go out to eat (maybe once a week), and I do only drink water on a daily basis.

I once received a message telling me that if I’d lose weight, my MS would simply “go away.”  Nice.  Isn’t that sweet?  No, it’s ignorant.  I’ve always struggled with my weight, I don’t make excuses for it, I take responsibility for it.  With that being said, I’ve personally researched if there was a link to being overweight and having MS…there isn’t.  Plus, I had lost 40 pounds before getting sick at all, so why would a disease that is caused by weight gain show up after weight loss?

I also received many emails from people telling me of the evil pharmaceutical companies, who are just out to make a buck.  These few individuals tell me that I need to try this or that or whatever the hell they read about on the internet that day to really cure me.  Again, I’m chastised for seeing medical doctors, for hoping to start medicinal treatment soon, for not living the way they would–or say they would.

todd-goldman-miss-know-it-all_i-G-69-6931-LYWX100Z

Now, I’m about to be really honest with you guys, and it’s not pretty.  One of the people who have given me the most trouble with this issue, who has always said that doctors are evil (seriously), who said that she would never, ever go to a medical doctor for any ailment or bring her kids to one either, has developed a medical problem.  Apparently she pulled a muscle and was in an extreme amount of pain.

And you know what?  She went to a doctor!!!

Not only did she go to a doctor, but she complained about how long it was taking them to give her pain meds!  And, I got really ugly inside.  Before I could filter myself, I immediately thought, “Um-hmm.  It’s not so easy when you are the one suffering, is it?  Where are your all-natural treatments now?”

I know.  It was a completely un-Christian moment.  I wasn’t happy that she was sick, but I did feel some sort of vindication that she was seeking help in a way that she said she never would.  It’s easy to judge situations when you are not in them.  I’m not proud of myself and that moment, but it happened nonetheless.  So, I might as well share my faultiness with you.  I’m a work in progress…

And, maybe I encourage the comments.  People probably have no idea how sick I’ve truly been.  I feel like I’m to suffer in silence, so I don’t complain very much.  I also believe in the power of positive, holy thoughts, so I try to steer clear of negativity, whether that’s to hear it or spread it.  Medically speaking, I have not started pharmaceutical treatments, but the minute the doctors give the “official” diagnosis, I plan on it.  I’m sure I’ll be judged for this decision, and I plan on just ignoring those judgments (although that’s easier said than done).

But, let me offer a different approach for those who feel condescending attitudes and words are necessary…  Instead of passing judgment on someone who chooses to deal with their health in a way different from you, why don’t you try being compassionate instead?  I would not judge you for going an all-natural route, I simply ask the same respect from you.

Maybe take a moment to put yourself in my shoes.  Try to think what it must be like for those dealing with medical atrocities.  Because, unless you have been there yourself, you have no idea.

You have no idea what it feels like:

  • to hear the doctor say that your tests show that you have a chronic disease–to look at my husband, who was fighting tears, trying to keep himself together, knowing that I’m going to have to be strong for him
  • to worry about your children, to worry about how are you going to explain something so serious to an 8-year-old and an 11-year-old (who actually has the mentality of a 6-year-old)
  • the guilt I feel that I am not being the mother I want to be, the guilt I feel when I can’t take my kids to the library like we usually do, the guilt I felt when we had to cancel our first ever family vacation because of my health, the guilt I feel when my youngest says, “I hate it when Mommy is sick.  I miss healthy Mom.”
  • to spend weeks in bed at a time, with no one to help you during the day with the most basic of needs, such as water and food
  • to need someone to help you make it to the bathroom, just 5 feet away from the bed, to need someone to help you get in and out of the shower, to need someone to help you get dressed
  • to be so independent your whole life, now to find yourself completely dependent on others at times
  • to feel so isolated, so lonely, so forgotten by others, with only the internet as a link to the outside world
  • to struggle in your faith and spirituality, wondering where is God?
  • to fear the brain damage that is developing, to fear what function you could lose at any moment, quite literally
  • to have to give yourself IV treatments for a week, just to be able to function again
  • to wonder upon waking, are my legs going to work right today?  Will I be able to see out of both eyes?
  • to rack up $15,000 in medical bills, and to feel so helpless about paying off that debt–because you are so undependable right now, how on Earth could you work?

You have no idea…and I sincerely hope that you never do.  I hope that you never have to make hard decisions for yourself or a loved one.  Nothing can really prepare you…

This is just a snapshot of what my life has been like for the last year.  I feel so sorry for the people who are terminally ill, or those fighting for their lives.  Can you imagine what cancer patients go through?  (I actually watched someone very close to me die from breast cancer.  Even seeing her pain, I know that I cannot imagine what she was truly going through.)  What about their caretakers?  What about parents of seriously ill children?  I cannot imagine.  And I don’t pretend to.

Please, before you judge someone in this way, just take a moment to really think about their journey.  Before you send an article with your personal ugly commentary, why don’t you try calling that person?  They’d probably eagerly welcome the distraction.  And, if it’s uncomfortable to call, text them.  Send them an email, Facebook message, anything.  We live in the age of communications, after all.  Communicate!  Let them know that you are thinking of them with love and compassion, not judgment.

And, if you do decide to share articles, scientific findings, etc, here are some basic tips from me (a complete non-professional):

  • Be wary of any article that claims to cure an incurable disease.  I receive many articles claiming to reverse MS, but upon review, there is never any evidence of a cure.  There is evidence of a reversal of symptoms, but not a reversal of the disease (i.e. reversal of brain/spinal cord damage or a reparation of nerves).  When an article makes such obvious false claims, I tend to disregard the entire article.
  • Be wary of any article that tries to sell you something at the end.  Those aspartame articles?  Many of them are from companies selling aspartame detox kits.  I’ve gotten many articles on various diets, most from sources selling the diet books.  I question the true motives of these companies, especially if you have to buy a book just to get the information.
  • Use your common sense.  Really.  If an article is saying that the cure to cancer is some ginger root, grown in the Fiji mountains during the third month of the year, fertilized by the excrements of an ape, but only on Tuesdays, and said root must be plucked from the ground during the light of a full moon, maybe skip on sharing that one.  (I’m only partially joking on this one.  There really is some crazy stuff out there!)
the official "fertilizer"

the official “fertilizer”

  • Look for articles that actually offer something useful, not just negativity about the pharmaceutical companies.  Share articles that show scientific evidence or personal stories of people who have benefited from all-natural remedies.
  • Don’t make assumptions about a specific disease.  If you’re going to make a claim, research it first.  Or just keep your opinions to yourself.
  • Last, but most importantly, evaluate your reasoning for sharing the article in the first place.  Is it coming from a place of love?  Then, by all means, share it!  And, maybe let the recipient know what your intentions are.  A simple “I hope you find this helpful” can go a long way.

As for me, since I have not been able to start medical treatments, I have tried almost every alternative that was reasonable.  I have tried holistic treatments, special diets, different medicines for the symptoms, and even some all-natural pills and drinks.  Currently, my family practices clean eating (as much as our budget allows), I take B-12 shots, B-6, C, and D vitamins, slow iron supplements, and I’ve been trying an iodine treatment for 3 months now.  I am actually very conservative about medications (believe it or not), so all of this has me in a completely uncomfortable place.  I also have prescriptions for pain meds, which I hardly ever take.

I sincerely hope that this very long (sorry!) blog post has been informative in some way.  If you are ill and get frustrated by all of the “experts” in your life, I hope you find comfort in the fact that you are not alone.  If you are someone who is a sharer, I hope that some of my personal tips can be helpful when you are choosing what to share with your loved one.  And, if you are someone who is looking down on those who live differently than you, I sincerely hope that this can help you see another point of view.

Let’s respect each other.  Let’s love each other.

Do unto others as you’d have them do unto you.

its-what-you-learn-after-you-know-it-all-that-counts

I’ve Been Labeled…

Today I had to have blood work done…again.  No biggie, my veins are used to it.  However, today I noticed something quite disturbing on my orders.  On the top of the page, in bold lettering, marked with asterisks, was the following:

***High risk of falling***

Great, my secret is out.

I blame the hospital for this.  See, I had to be hospitalized for a few days back in September, and while I was being admitted into a room, the nurse was asking a ridiculous amount of questions, one of which was “Have you felt dizzy?”

Well, of course I had.  My vision was blurry and my left leg just wasn’t cooperating with the rest of my body.  You try walking normal feeling like Mr. Magoo in a leg sling, without being dizzy.

After admitting that yes, I do feel dizzy, the nurse says,”Well, my friend, that makes you a fall risk.”  He then proceeds to give me 2 things:

1.  This lovely bright yellow hospital bracelet, complete with the words “Fall Risk” boldly printed on it.

IMG_6100

As he fashions this new accessory to my wrist, a sudden thought hit me.

Oh, dear God…  It’s official.

I have a Spaz Tag.

That’s right, people.  Read ’em and weep.  I have a SPAZ TAG!!!  You think you’re clumsy?  Got proof of that?  I do!

Bow down to the Queen of Spaz!

2.  Along with my lovely bracelet, I was also given these nice, warm socks.

IMG_6101

Aren’t they cute?  See the pretty yellow?  Doesn’t that just make you think of sunshine?  No, I instantly thought of Big Bird.  And caution signs.

Just take a minute to look at these things.  Know what I first noticed?  That they have rubber nubs (can I say ‘nubs’?) on both sides of the socks.  Both sides!  Why would you possibly need traction on the top of your feet?  If you are falling because of the top of your feet, I think you need more than just a Spaz Tag.

How does one do that, anyway?

This all struck me as quite funny, and I couldn’t help but laugh.  The nurse probably thought I was crazy.  He would soon get used to my sense of humor.

One night, while taking vitals at 3am, he tells me, “Your temp is 94.5, and your blood pressure is 75 over 41.”  Even half asleep, I realized that these numbers seemed a tad low.  So, I asked the obvious question…”Seriously?  Am I dead?”

He laughed, I laughed.  Was the situation funny?  Absolutely not!  I hated being in the hospital, having people come in at all hours of the night and day, just to violate me.  I hated that my sweet little boys were scared and wanted their mommy.  I hated that my husband was camped out at the hospital, sleeping on a fold out couch.

But I laughed regardless.  Because sometimes, you have to choose to laugh or cry.  I choose to laugh.  Life is too short; my time is too precious.  God gave me a sense of humor, and no matter how corny it may be, I choose to use it to make serious situations less serious.

So, even if you’re labeled as a “Spaz,” just laugh it off.  Find the positive of your situation, because regardless of how dim it may be, there is some light somewhere.  And, if you’re having a hard time finding the positives, turn to someone who can be a little more objective–a friend, a family member, a pastor.  (Just make sure you’re turning to a positive person; no one needs negativity in their life.)

And, if you see me, steer clear.  Because if I fall, I may take you down with me.

skill

Not So Ordinary

It’s November, which means one thing: my Facebook feed is riddled with “today I am thankful for… posts.”  And, although I think these are great for the most part, for some people, I’m like,

november 2

I know.  I’m horrible.  Pray for me.

I very passionately think that we should be thankful every day for the blessings in our lives, regardless of how big or small, and I try to instill this belief into my children.  However, since being thankful is the theme of November, we do have a similar tradition in our household that we started last year.

Behold our family Thankful Tree of 2012:

Our tree from 2012

Basically, every night at dinner, each family member writes what they are thankful for that particular day on a leaf which is taped to the tree.  Here’s a close up:

2012 tree top

My favorite from last year was The Younger Boy’s leaf that read ‘Ninja Turtles.’  Because who doesn’t love the Ninja Turtles?!?  He also had a leaf for ‘good things that God made,’ showing us that once again how exceptional our then 7-year-old is.

This year, the kids were so eager to start the Thankful Tree again, that at the end of October, they were pestering me to cut out a million construction paper leaves.  We had to be ready for November 1!  And, we were.  Here’s our tree so far for 2013:

IMG_6073

And, as usual, my boys don’t disappoint.  On day 1, The Older Boy was thankful for cats.  Not us, not other family members, not his friends.  No.  His cats.  Which reminds me of this post.  Geez…that kid is so obsessive.  Is there such a thing as ‘cat detox?’  But, don’t fear, ‘cuz he’s also thankful for popcorn.  Hallelujah!!!

The Younger Boy is thankful for pilgrims and indians, as well as dolphins and sharks.  Apparently, he is in a contrasting mood lately.  Also, the leaf that reads ‘Jeremy,’ which is his father/The Husband, has devil horns and a tail.  I’m not sure yet if I should laugh at that one  or schedule therapy.

Kids are wonderful creatures.  They love everyone and everything, and sometimes they love these things equally.  My mom?  Awesome.  My cat?  Awesome.  Popcorn?  Aaaaa-mazing!!!

So, taking a cue from my kids, I’ve decided to list some of the not-so-obvious things that I’m thankful for.  God, my husband, my boys, my Church are a given, but there are many things that I am truly thankful for that may not seem so obvious to some.   Plus, after being so sick this year, you do gain a new perspective on things.  Things that I count as blessings today are things I took for granted yesterday.

Without further adieu, here are just a few of the things that I’m thankful for:

  • Every day that I feel well.  People always say that they are thankful for their health, but lose it, and you will really gain a new perspective.  I got dressed by myself today! Like a big girl!  Woo Hoo!
  • Razors.  No, I’m not joking.  The Husband is participating in ‘No Shave November’  and has had a full beard since November 3.  I’m currently resisting the temptation to shave him in his sleep.  So, yes, I’m thankful for razors.
  • December 1.  I know it’s not here yet, but this will be when The Husband, willing or not, will shave his face.  Come on, December!
  • I’m thankful that The Older Boy is oblivious when other kids are making fun of him.  I’ve personally witnessed other kids picking on him for being a special needs’ child.  It breaks my heart; I become enraged; he doesn’t even notice.  He is confident in who he is.  I’m thankful that these little jerks aren’t changing who he is, aren’t making him question his own greatness.
  • Soap.  I’m a germophobe.  ‘Nuff said.
  • Incredible people, who for a lack of a better word, I guess I will just refer to as friends.  These people seem like so much more, I even consider many of them family at this point.  Topping the list would be the Ninja-Priest-Friend, who has been ever-present, bringing Communion when I couldn’t make it to Mass, hearing confessions in my home, and giving spiritual advice when I felt like I was on the brink of a spiritual meltdown.  In addition to him, we have many friends who have surprised us by cutting our grass when we just got out of the hospital, brought us meals, babysat my kids, and called or texted me just to check in.  They have made this whole ordeal a little more bearable.
  • A twisted sense of humor.  I have laughed at myself more this year than I should probably admit.  It should be sad…but it’s not.  Life’s too serious.  Lighten up.
    • For weeks, I couldn’t feel my fingertips, so I went around saying, “Who’s got 2 thumbs that she can’t feel?  This girl!!!”  
    • My left leg was dragging for a little while in October, so I was trying to figure out how to fit it into a gimp costume of some sort.  
    • I had to sort all of my meds into a million-compartment color coded pill-box to keep them all straight, and I laughed about how I could hang with the geriatric ward.  (A week ago, I kid you not, I was visiting with The Husband’s grandmother, and she asked me how many medications I was on.  We had a whole conversation about meds.  Kindred spirits!)
  • I’m thankful that The Younger Boy is a little freak.  I’ve always been a little weird, and apparently the freak apple doesn’t fall far from the weirdo tree.  For example, the kid went to the library a few weeks ago and looked for a biography on Alfred Hitchcock.  You should have seen the look on the librarian’s face; I’m sure he doesn’t get many requests from 8 year olds for that sort of thing.  Philip is so different and unique, and I pray that he remains that way, regardless of how his peers may view him.  He’ll be one cool adult.
  • Indoor Plumbing.  Because, eww.
  • Headphones.  As much as I love my children, and as much as I like spending time with them, sometimes I just need to drown them out.  Enter the headphones.  God bless whoever created them.
  • I’m thankful that I’m thankful.  No, I haven’t lost my mind.  Just stick with me for a moment here.  Gratitude is a virtue, and I believe that true gratitude is a very important part of being a true Christian.  To be grateful calls us to be aware of the gifts that God has bestowed upon us, whether they be big (like family and wonderful friends) or small (like soap and razors).  It calls us to see the things around us not as entitlements, but gifts.  It is quite humbling to realize that we are so fortunate to live in an area that has indoor plumbing and running water when there are areas of the world that do not even have clean drinking water.  So yes, I’m thankful for being thankful.  I’m grateful that God has opened my eyes and shown me how fortunate I am.

There really are many more things that I’m thankful for, and I could go on and on, but I won’t.  Not because I’m worried about boring you–see how considerate I am–but more so because my little blessings are about to get off of the bus and utter chaos is sure to abound the minute they enter the house.  In a few minutes, there will be screaming and crying.  Tantrums will be thrown about homework and chores.  Fights will ensue.

And that’s just me.

So, share with me.  What are the not-so-ordinary things that you are thankful for?

“All that is good, all that is perfect is given us from above; it comes down from the Father of all light; with Him there is no such thing as alteration, no shadow caused by change.”  James 1:17

A Flag, My Sister, and A Pig…Oh My!

It was Saturday afternoon, the weather was beautiful, and I wanted to spend some much-needed time with my 3 favorite guys.  The Husband and I decided we would surprise the boys with a Family Fun Night, but what to do?

I knew I wanted to be outside, and our activity had to be something relatively inexpensive. We are a family on a budget, after all.  I have absolutely no idea where this inspiration came from, but in moments, I knew what we would do.  I explained the concept to The Husband, and he was in immediate agreement.  I set it up, and in a short while, the family was on a city-wide scavenger hunt.

It was easy.  I thought of a few things that the kids could “find” around our hometown.  I wrote these things on slivers of folded papers, and placed them in a basket.  Each child took a turn picking a piece of paper and would then direct us to where that item was in town.  The night went something like this:

First up, Philip chose “A Flag”…and then could not think of where a flag was.  Eventually, he remembered that the library has 3!

IMG_6056

Next, John Edward chose “a place with a letter ‘d’ in it,” and to my utter dismay, we ended up at McDonald’s.  Oh, how I absolutely hate that place!

IMG_6058

The kids were already having fun with this, and I was tickled pink!  They couldn’t wait to see what was on the slips of paper, and they really enjoyed telling me which way to drive.  For the first time in about 5 weeks, we had a stress free evening.  The night continued…

Clue #3…Philip chose “a fountain,” and of course, we ended up at Our Lady of Lourdes Hospital because my kids know that place inside and out.

They act so cool, like they weren't running to take the picture...geez...

They act so cool, like they weren’t running to take the picture…geez…

Clue #4…John Edward had to find “a family member,” so we were off to track down my sister, Caitlin!

Caitlin, an amazing aunt and sister!

Caitlin, an amazing aunt and sister!

After this, we decided to stop hunting to take a dinner break, and we ended up at a local restaurant.  I looked at the boys, cheeks rosy from the wind, with smiles over their little faces, and I felt the most serene contentment ever.

That is, until we were introduced to Philip’s newest villains.  Behold his menu creations:

The evils of tomorrow: a stapler with fangs, an alien, and...broccoli?

The evils of tomorrow: a stapler with fangs, an alien, and…broccoli?

Apparently, the broccoli has come to Earth to destroy it.  This is Philip’s very serious belief.  He believes that broccoli was never meant to be eaten, and that it was a huge mistake by mankind.  Can’t say I disagree with him.  Quiver with fear people, quiver with fear.

Back to our Scavenger Hunt!  Clue #5…Philip had to find “a piece of art.”  Now, we live in a city that has a fair amount of art to choose from.  He could have chosen from quite a few paintings, sculptures, statues, etc.

What did he pick?

A painting on the side of a comic book store.  Behold!  Captain America!  Thought provoking, no?  Hmmm…what is your interpretation of this piece?

Well, it IS very good, at least...

Well, it IS pretty good, at least…

Clue #6…John Edward had to find “a church (that wasn’t ours).”

St. Jules Catholic Church

St. Jules Catholic Church

Clue #7…Philip had to find “a park.”

IMG_6066

Clue #8…Last, but not least, John Edward had to find “a statue.”  Again, we are surrounded by beautiful statues in this area, especially spiritual imagery.  So, what was the beautiful statue that my oldest son chose?

Was it something spiritual that will move the soul?

Was it something historical that will rouse the troops?

Was it something beautiful that will stir emotions?

No.  It was this:

IMG_6069

A pig.  With a bow.  A freaking pig with a bow.  And look at my children, grinning from ear to ear, so happy to be with that pig!

Oh well, I’ll teach them culture another day.  For today, we had fun.

Our final stop was at a local candy store to get the boys a treat, and they wanted to turn the camera on us.  After about 6 tries, all of the pictures came out like this:

IMG_0344

I pointed out to the kids that they were all blurry, especially Jeremy, to which Philip said, “I don’t think it’s the camera.  I think it’s Dad.  Dad’s personality is just blurry.”

To which we replied:

IMG_0348

Dang, I wish these were clear!  Oh well, the memories are there, right?  And I hope they stay.  But more importantly, I hope we have more opportunities to make memories.

So, go make memories with your loved ones.  You don’t need money.  You don’t need a fancy plan.  You just need each other.

Stupid Pumpkin Pie

As a child, I thought that only kids daydreamed.  I assumed that once I was an adult, I would no longer get lost in imaginary worlds.  What a crock!  I still get lost in my imagination.  I still daydream.  Sometimes reality is so intense that I need to escape to a place more heavenly, where there is no loss, no pain, no disease, no hurting children.

I tend to get lost in my own little world.  Often.

My mind also races from one subject to another.  I can start off thinking about what I need to get from the grocery store and end up thinking about muppets.  My husband finds this sometimes fascinating, sometimes frustrating.  I find it exhausting.

Apparently, I have a very distinct look when I’m in La-La Land, because The Husband will ask, “Whatcha thinking about?” with the curiosity of a child who finds a new toy.  And, although I know his question is genuine, I never know how to answer that.  Does he really want to know that I’m wondering why did we have to take trigonometry in high school?  Who uses that?  Or what is the big deal about bacon anyway?  Do I need to water the flowers at the church today?  I wonder if John Edward will be able to live independently when he grows up?  Who will take care of him when I can’t?  I love “The Labyrinth”…I really want to watch that movie when I get home.

So, while driving yesterday, he asks me his usual, “What’s on your mind?”

My response?  “Pumpkin pie.”

pumpkin pie

Since my thoughts are always all over the place, he was content with this answer, but it wasn’t really an accurate truth.  It wasn’t a lie, but it wasn’t a full truth.  The truth was that I was thinking about a meltdown that I had just a few days earlier.  I was making a list of the things that I needed to get together for Thanksgiving.  (Oh, Thanksgiving!  My favorite holiday of the year!  Such a day of simplicity, just a day with loved ones, celebrating the things that we are thankful for.)  I was making a list of the ingredients needed to prepare the dishes that I always bring for Thanksgiving when I got to the pumpkin pie: 2 pumpkin pies.  One for the family.  One for my grandfather to bring home.  Then the realization sunk in.  No, just one pumpkin pie this year.  This is the first Thanksgiving without my grandfather.

The last picture I ever took of my grandfather, exactly one year ago today at Philip's Veteran's Day program.

The last picture I ever took of my grandfather, exactly one year ago today at Philip’s Veteran’s Day program.

I lost it.  Thank God I was at home.  I know that we should be prepared to lose older family members; I know it’s all a part of the circle of life, but it amazes me how it’s the smallest things that make me miss my loved ones.  Like stupid pumpkin pie.

Overall, it’s just been a crappy year.  This will be a Thanksgiving of many firsts.  Not only did I lose my paternal grandfather, but I lost both maternal grandparents.  So, I only have one living grandparent left.  I love her dearly, and I am petrified of the day that will inevitably come when she too will be called Home.

Also, my parents got divorced.  Old friends will be surprised to hear this.  My parents will probably not be happy to read this.  (Sorry Mom and Dad.  I respect your privacy, but this is my story too; I have a right to tell it.)  So, things are different.  I’m getting to know my parents as individuals and not as a couple.  Sometimes it’s great; sometimes it’s saddening.

Health wise, it’s been a really hard year.  My doctors (of whom there are many) pretty much all agree that I have Multiple Sclerosis, but there is not enough clinical evidence of it yet, so no one has given the definitive diagnosis, which means I am on no treatment as of this writing.  (For any medical buffs out there, I don’t have enough lesions on my brain/spinal cord–I only have 2 lesions on the brain. I’ve had signs of MS show up in my spinal fluid and had an abnormal VEP.  Apparently, this isn’t enough for them.)  Of 2013, I have only enjoyed a few weeks of the spring, August and September, and I have been feeling very well the past 2 weeks.  That’s it.  I’ve spent weeks in bed at a time and have had moments of honest hopelessness.

With that being said, this is not a “woe is me” post.  Things are hard; I’m not denying that.  There are definitely days where I have a hard time making it through without locking myself in the bathroom and crying like a baby.  My faith has wavered this year, especially through this last relapse–I’m working on that with the Ninja-Priest-Friend.  I’m angry that my children are suffering.  I’m angry that their childhood is rifled with such seriousness.  I’m saddened at my perceived abandonment of God.  (Note the word perceived…I know that He is with me.  It’s something I’m working on.)

No, I am not in a state of self-pity.  I do wish that things would be different.  But they are not.  I don’t know why this is the hand I’ve been dealt, but it is.  This is my life, and I’ll live it to the fullest.  I am truly thankful for every day that I have.  I am truly thankful that I am writing here today.  I am thankful that you are taking the time to read my ramblings.  I am thankful for you.

And I am thankful for pie.  Even stupid pumpkin pie.

Lost Treasure

I’ve been staring at an empty screen for about 30 minutes, not really knowing where or how to start.  I recently received a message from a reader, which says:

“Hello my sister,

How are you?  Almost 2 months and no new item on your blog.  Are you alright?  You used to share your wonderful emotions and God experiences.  Keep moving with your difficulties.  You are not alone.

May God bless you with good health!”

 

The problem is, I haven’t really had anything to share.  Nothing good, at least.  I try to be a positive person, not focusing on the negative, but life has been pretty hard lately.  So, I’ve kept the negativity to myself…no need to share that, right?

The short version is this: our long-awaited visit to the MS specialist ended up being a total letdown.  The doctor basically told me that it’s possible that I have Multiple Sclerosis, but he does not want to diagnose me unless I get much sicker.  We were expecting to start treatment, but instead, we took about 10 steps backward.

So, the next few weeks were filled with even more testing, some of it intrusive, some of it painful, all of it uncomfortable.

Still no definite answer.

Three specialists say it’s MS, but no one will formally diagnose me, so no treatment.  Don’t get me wrong, not having MS would be wonderful news!!!  But, then what is wrong with me?  (Besides the obvious sanity issues, of course.)  Medically, at this point, I’m just in limbo…a medical purgatory, shall we say?  (Oh Lord, help me.  I just laughed at my own corny joke.  I really need to get out more.)

Besides being utterly disappointed by my lack of progression towards health, I was still very ill.  Though I no longer had vision problems, I still suffered with quite a bit of pain, as well as fatigue and cognitive issues.

I was pushed to the brink emotionally, and my faith was wavering.  I flip-flopped between knowing that God was with me to feeling extremely alone.  One minute I had faith that my trials were to serve some greater good, then the next minute I was angry.  Not only was I suffering, but my husband was missing his wife, and my children were missing their mother.  I physically could not be as available to them as I normally am.

I felt like such a failure to my family, and the guilt was almost too much to bear.  I just could not find the purpose for this…I was not living but merely existing.  I was in an emotional and spiritual funk that I just could not shake.  Even the earnest attempts of the Ninja-Priest-Friend could not help my spiritual desolation.

Then, one day I woke up and felt a little better–emotionally and physically.  And the next day, I felt better still.  And each day progressed with a little more happiness and a little less pain.  For three weeks, I’ve felt decent.  I’m still not at my best and haven’t been since January, but each day is an improvement upon the previous.

So, I’m taking each day slowly, thankful for whatever progression emerges in that particular day.  It’s amazing what you can relish when you feel like you’ve been down to nothing.  Getting out of bed without pain in the morning makes me giddy, and being able to chase the kids around the house gives me the greatest feeling of contentment.

I’ve always been one to enjoy the simple things, but now I appreciate them with a fervor never felt before.  I hope to continue to improve, even if we don’t know why, even if I never know what was wrong with me for the past 5 months.  And, even if I never reach optimal health, I know this:  I will be thankful for whatever is given to me.  Because I know what it feels like to be down to nothing.

Life is such a treasure.  I forgot that for a while.  I lost my treasure and couldn’t find a map.  But life is a treasure that cannot be found in any location; it is found in time, in experiences, in days, in moments.

So, day by day.

Moment by moment.

I’ll cherish it all.