Multiple Sclerosis (MS) Changed Our Lives. . .For the Better – Part 1

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“We think you have Multiple Sclerosis” were some of the scariest words I ever heard being said to someone I loved.  Yet, there I was hearing them firsthand from a doctor.  Little did I know, those words would be the beginning to a journey that has gotten us to where we are now.

This is probably the hardest post I’ve written to date and will undoubtedly be one of the more personal ones. But, to truly understand the Frugal Virginia Farmhouse and the people within it, it’s important that I share this piece of our story.

4 years ago today, my husband was diagnosed with Multiple Sclerosis, otherwise known as MS.  I’m not exaggerating when I say that in one split second I experienced my world fall out from beneath me, the wind being sucked from my lungs, and my heart ripped out of my chest all at the same time.  Six words.  That’s all it took.

I realize that I may be painting a heinous picture while just a few short sentences ago, I said that it had changed our lives for the better.   Stick with me here.  At the time, I thought my world was coming to an end when that doctor uttered those words.  I mean, my husband was only 36.  “How does he have Multiple Sclerosis?  Aren’t people with MS . . .older?”  That is a question that immediately came to my mind.  Right after “Does this mean he’s going to be in a wheelchair for the rest of his life?” 

In case you are wondering, the answers are: Because he does (MS is “luck of the draw” to use the doctor’s wording), No, and We don’t think so (luckily) . . . in that order.

Let me backtrack for a second.  For a couple of weeks prior to the diagnosis, he had been feeling kind of “off”.  Just kind of dizzy, tired, and he had complained about his vision being a little “weird”. Not necessarily blurred and not necessarily double vision but almost a blurred double vision at certain times.  Mainly when he first got up in the morning or was really tired.  I don’t know about you all, but my vision is blurred and double when I first get up, when I’m tired, or when I’ve had too many (not root) beers.  Therefore, I told him that he was probably just suffering from seasonal allergies or he was pushing himself too hard and needed to rest a bit more.  The man sleeps basically never.  So, for roughly 2 weeks I was telling him that he needed to rest and take his allergy medicine consistently.  And telling him to stop being such a sissy baby.  Okay, maybe I didn’t actually say that out loud to him but I may or may not have wanted to.  

After a somewhat scary incident at work one day where he kept accidentally bumping into a client as they were walking and had experiences of knowing what words he wanted to say, but couldn’t physically make them come out of his mouth, he knew something else was wrong.  Admittedly, I did too at that point but I really did still think it was unrecognized stress.   I told him to go ahead and make an appt. to talk to his doctor if that would make him feel better.  I thought for sure the doctor would tell him that he needed to relax more.  Sleep more.  Take it easy a bit more often.  You know. . .allow himself to. . . ahem. . .start getting “older”.  ‘Cuz 36 was ancient and all.

He called his doctor that day to make an appointment and the doctor said that he was concerned with the symptoms that were being presented.  He encouraged him to instead be seen in the emergency room.  Doc said that the symptoms that my husband was experiencing could be the signs of a stroke and indicated that if it was a stroke, the ER would be better equipped to help him quickly.  While I’m about the furthest thing from a medical professional, I was pretty sure it wasn’t a stroke and was quite annoyed at the doctor.  I figured he probably just didn’t want to take another patient that day and really wanted to call him and give him a piece of my not-so-clean mind (at the time) and tell him how he should be ashamed of himself for doling out such ridiculous potential diagnosis’ just to save himself the burden of another patient.  Yeah, I was making some pretty extreme assumptions there.

Fast forward to us begrudgingly sauntering into the emergency room at our local hospital that evening (yes, it took us hours to get him to the ER.  We really weren’t taking this seriously, at the time.  We even stopped for dinner on our way.) and casually filling the front desk nurse in on hubby’s symptoms.  She just kind of stopped doing what she was doing, stared straight at him and you could tell she was waiting for him to say “Nah, I’m just kidding!”.  She just kept staring at him.  I now know that she was looking for certain signs & symptoms but at the time it was a really weird experience.  All of a sudden, you would have thought we yelled “FIRE!”

There was no “take this clipboard, have a seat, fill it out and then we’ll call you in an hour”.  They immediately brought a wheelchair out and he was whisked to the back where a team of nurses were waiting to take his vitals and get him signed in.  All logistics of insurance information and his medical history were taken care of in small doses either as they needed the information (medical history that was necessary for making immediate diagnosis of presenting issue) or while I was waiting for him to get back from the series of testing they were putting him through. After a couple of hours and consults with a few different doctors, it was determined that they still didn’t know what the issue was. The decision was made to keep him overnight until more definitive testing could be done the next day.  Only afterward did I find out that the reason they weren’t able to give us any information that night was because the neurologist that was consulted with, which was done virtually with us in Virginia and the Neurologist in California, was pretty sure he knew what it was but said there was no way that my husband should have walked into that emergency room under his own power if the test results were accurate.  I’ll tell you more about that shortly.  Anyway, with the decision being that he was staying put for the night, that meant I had to return home to take care of our son.  I left the hospital that night without my husband or knowing what was really going on with him and that was terrifying.

The next day, I returned to the hospital and a different staff of doctors and nurses than the people that were there when I had left him those few hours before.  Luckily, I returned to the same husband, though.  He was still there and still kicking!  It was almost immediately clear that neither of us had really slept the night before.  We were both too freaked out by how quickly we found ourselves going from “eh, it’s just your allergies” to “code red – get this man a wheelchair STAT!”.  Another thing that was freaking both of us out (you know, aside from the fact that we still had zero answers) was that overnight they had made the decision that D should be coded as a “Fall Risk” which meant that he was confined to his bed.  He was not allowed to get up and out of that bed without both permission and assistance.  There was a note on the door to his hospital room indicating this and he was made to wear a yellow bracelet which served as notice to all that he was not to be mobile under his own powers.  We know now that this was for his own protection but at the time, we still didn’t know what the hell was going on.

While he ended up being put through a couple more tests that day, including an extensive MRI, we still didn’t get much information from anyone.  Nurses came regularly to check his vitals and inform him of any new tests that the doctors were ordering but no one was giving us any insight into what was really going on.  Apparently, no one was able to divulge anything because there was some debate going on between doctors about whether or not it could really be what they thought it was.  After all, this man walked into the hospital under his own power and his symptoms, while weird and unusual, not incredibly alarming.

Finally, around 3:30 pm that day, the doctor on call came into Dan’s room and said “the final diagnosis is going to have to come from the neurologist (okay, freaky statement #1, dude) but he won’t be making rounds until after 11:30 tonight and I don’t want ya’ll to have to wait that long.”  {let’s not talk about the fact that any doctor who comes to visit me after 11:30 at night is not likely going to walk away from that conversation and ever be the same again!} This is when he proceeded to say those 6 words that stopped my world spinning on its axis.

“We think you have Multiple Sclerosis” 

I’m sorry. . .what?  I may have even asked him if he grabbed the wrong chart out in the hallway.  Clearly, he was in the wrong room.  Isn’t multiple sclerosis for old people?  Doesn’t that put people in wheelchairs?

Again. . .No (!) and not necessarily. 

If you don’t know anything about Multiple Sclerosis, well. . .1. you are in good company because I didn’t either (at first) and 2. here’s a brief lesson:

What is Multiple Sclerosis?

Multiple Sclerosis Signs & Symptoms

Why it took so long to get answers – Both MRI’s done showed D’s brain “lighting up like the 4th of July”.  Those were the neurologist’s words.  In fact, the lesions in his brain were lighting up so much and there were so many that they thought the first one was a false read.  When the second one showed the same result, they were really questioning how D was presenting the way that he was.  He walked into the hospital on his own, his sight was a bit blurry and double-y in the morning but otherwise okay, and his speech patterns weren’t what they normally were but he was talking.  He was expressing that he was slower to be able to get words out and sometimes he couldn’t get the word he wanted to say out but he was still holding conversations fine.  Based on the way his MRI’s were showing, they didn’t think he should be able to walk or talk normally.  And they were even questioning whether he shouldn’t be having optical challenges, as well.  That’s where the debate among the doctors came in and why it was taking so long. Because they were consulting with so many to get different opinions.

Needless to say, we were shocked.  And scared.  Very very scared.  At the time, I didn’t know much about MS and what I did know wasn’t at all how I could ever envision my strong husband becoming.  Luckily, the wonderful doctors and nurses picked up on this confusion and fear and quickly reassured us that MS isn’t exactly the diagnosis that it once was.  Instead of painting a picture of scary outcomes, the doctors and nurses were helping to encourage us that many people lead perfectly normal lives with MS.  Turns out, they were right!

In total, D ended up staying in the hospital for a total of 8 days.  The lesions on his brain were very inflamed so the doctors ordered a fairly intense steroid treatment which necessitated that he stay in-patient for it to be administered and monitored.  At the time, it was overwhelming that he was staying in the hospital for so long but looking back on it, I now recognize that time in the hospital allowed us to get acclimated to what MS really is in a safe and informed environment surrounded by encouragement.  Had he been diagnosed and sent right home, I likely would have set off getting my education from Dr. Google and I am so glad I didn’t do that!

I recognize that The Frugal Virginia Farmhouse is focused on frugality and homesteading and that this topic may seem like a wild tangent from that overall theme.  I get it!  In looking back over how we’ve gotten to this place, though, where we live a life of more simplicity, less commercialized stuff and find new ways of leading our lives in a frugal and simplistic manner, D’s MS plays a fairly large contributing factor to that.

Be sure to come back on Wednesday for Part 2 of the MS series and learn how we went from initial diagnosis to making a move toward more simplicity in our lives.

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