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

Bruised Insight

Our family attended Good Friday services for the first time this year, and I thought the entire service was absolutely beautiful.  I loved every minute of it, from the time the priests lay at the foot of the altar in prayer to the veneration of the Cross.  Unfortunately, I could not be 100% involved because “my friend” decided to make an appearance…stupid MS.

While standing for the very long gospel, I started to get dizzy.  I tried to ignore it for a little while, but it just grew in intensity.  My legs began to get weak, I got extremely hot, my vision got blurry, and I just knew I was going to pass out.  Fanning myself with a bulletin, I desperately looked around for The Husband.  He and The Younger Boy left our pew to go to the cry room so as not to disturb everyone around us.  The Younger Boy had a cough all last week, and although he wasn’t sick (according to our pediatrician) his cough sounded horrible.  We were about five minutes away from being knocked out by old ladies throwing cough drops at us when The Husband and The Younger Boy left.

So, now I’m worried that I’m going to pass out, and it’s just me and The Older Boy in the pew.  I’m not worried about my health; I’m not worried about hurting myself if I fall.  No, I’m worried about the embarrassment of passing out in church.  I’d be that lady.  As in, Did you see that lady who passed out in church?  No thank you.  I’m a big enough embarrassment to myself when I’m feeling fine; we don’t need to add anything new.

Pride will be the downfall of me.  No doubt.

I end up sitting halfway through the gospel, desperately hanging on to what little dignity I have left.  I know I look like a mess; I feel like a mess.  Please God, don’t let me pass out in church.  Please God, don’t let me throw up.  The sitting helps, and after a short while, I was feeling a little better.

By the time we go to venerate the Cross, I’m feeling a little more normal, so I decide to participate.  However, once we were back in the pew, I felt horrible again.  The room was spinning, my stomach was churning, and I felt extremely weak.  Thanks MS for the vertigo…you big jerk.

photo courtesy of WebMD

photo courtesy of WebMD

I’m starting to get discouraged, when I remember the Ninja-Priest-Friend talking to me about carrying my cross.  He’s constantly telling me that, and honestly, sometimes I just don’t want to hear it.  I understand that this is a trial I’ve been given.  I understand that it’s an opportunity to grow closer to Christ.  I understand these things on an intellectual level.  But, on an emotional level, it’s sometimes hard to deal with.  I look at the beautiful crucifix behind the altar, and I remember the homily from Holy Thursday Mass.  Fr. Mario (a different priest) had compared Jesus to the Passover lambs of the Old Testament.  He was completely unblemished, and even after His crucifixion, he had no broken bones.  I looked down at my arms, still bruised from IV treatments weeks ago, and I have an extreme moment of clarity. Continue reading

Sincere Thanksgiving

Life is great.  Really.

I haven’t been able to write in about 10 days because my current multiple sclerosis relapse took a serious turn for the worse.  I woke up one morning a few weeks ago, with a loss of vision in one eye, blurred and double vision in both eyes, and I was having serious balance problems–that’s code for “falling on my butt with every other step.”

After waiting it out for a few days (I was told I had to just be patient through this relapse, which actually started on January 13), we called my neurologist.  He is sending me to a specialist, which we have anxiously been awaiting–just 2 more weeks now!–and has been hesitant to treat me until I’m seen by said specialist.

Well, because my symptoms escalated so quickly, the neurologist decided to treat the relapse.  Unbeknownst to me, treatment included 5 days of high-powered IV corticosteroid infusions.  Whatever.  I need to see.  This disease can affect so many different parts of the body, all at once, that it is hard to diagnose.  For me personally, I can handle pain much better than what I call “head stuff.”  I can ignore physical pain.  I can’t ignore mental confusion, loss of vision, light sensitivity.  Those things impair my quality of life.  The things I love need some sort of mental capability (however little I may have), such as reading, writing, movies, theatre, etc.  So, even though I wasn’t sure what IV treatment would be like, I was up for it.

The next day (last Thursday to be exact), I began IV treatment.  (I’ll share more on this experience later, when I was blessed with the gift of perspective.)  Almost immediately, I saw results.  Friday morning, just after one treatment, my vision cleared up.  I still could not read well, but I no longer had blurry or double vision.  And the blind spot was gone!  Saturday morning, vision was completely clear, I no longer had balance problems, physical pain, and no fatigue or fever.  This morning, just after 3 treatments, I felt no sting of the MS symptoms that have plagued me for 2 months.

Nothing.

No pain.  No vision problems.  No fatigue.  No balance issues.  No numbness.  No confusion.  Absolutely nothing.  All MS symptoms are gone.

I don’t know if I’ve ever woken up so happy before in my entire life.  How could I not be elated?  I could actually walk to the bathroom without holding on to the wall.  I wasn’t exhausted after getting dressed.  Even better, I could get dressed by myself!

According to The Husband, this image best fits me this morning.  Seriously couldn't stop smiling.  :)

According to The Husband, this image best fits me this morning. Seriously couldn’t stop smiling.   :)

Like I said, Life is great!

Even though I went to Mass yesterday afternoon with my mom, I decided to join The Husband and my boys again this morning.  I felt such an immense amount of peace and calm, that I just knew I had to give credit where it is due.  What better way is there to pay homage to our Lord than adoring Him in the most Holy Mass?

We usually arrive at church pretty early to have personal prayer time in the quiet.  Today was no different.  Now, I’m usually extremely private when it comes to my personal prayer, but I feel called to share this with you.  So, rather than paraphrasing how I’m feeling today, I’ll just share my personal conversation with God.  Here goes: Continue reading

Mystery Solved

“I know God won’t give me anything I can’t handle.  I just wish He didn’t trust me so much.”  –Blessed Mother Teresa

It’s been a rough two years for me.  I’ve had some health problems, and no one has really been able to help.  My doctors have all shuffled me from one to the other, all claiming that my problems were not their problems (professionally speaking).  I went from never feeling bad, to feeling bad every couple of months.  I’ve been diagnosed with PCOS (polycystic ovarian syndrome), Epstein Barr Virus, severe vitamin deficiency, and–my personal favorite–depression.  All were treated (I even had a surgical procedure for the PCOS), yet I never felt better.  I would be healthy and energetic for a few months, then I would get sick for a few months.

Then, shortly after my grandfather’s death, I woke up one morning extremely dizzy, with blurred vision, a pounding in my head, muffled hearing, and left-sided numbness.  I got out of bed, then fell against a wall.  As scary as that episode was, it was the best thing that could have happened.  It sent me to the ER–which found nothing.  I was told that I had an anxiety attack.  (I don’t know how one wakes up with anxiety–apparently that was one hell of a nightmare.)  But, the ER doctor had me follow-up with a neurologist a few days later, who ran a battery of testing, including MRIs, CT scans, a VEP, and a lumbar puncture.

After one month of testing and waiting, I finally got an answer last week.  The neurologist came into the examination room, looked at my husband and myself, and proceeded to show us numbers and test results that I didn’t understand.  But, even though I didn’t understand his medical terminology, I did understand his facial expressions.  His face betrayed his professionalism; he had bad news.  What was his “bad news?” Continue reading