Happiness is Acceptance, Acceptance is Peace

It's been a few months, and I've realized something.

My medical history is a full one, for sure.  This year alone, I will have trumped what most people experience in their medical lives until they reach their mid to late 60's.  In the last four years, I have learned more about myself and my disease(s) than my medical professionals typically know off the bat.  It has made me a better clinician to my patients, and it has made me more empathetic as a human.

But most importantly, I feel it is vital to stress one fact: my life is not hard.

I say this now, having lived a hard life.  Sure, I can sew sonnets of woe for my past, I'm even writing a book, and I could elicit an "awww" response with a genuine story every day if I wanted to.  But I don't.  Because as hard as my life has been, I owe it to the world not to complain about it - and because I know that, right now, it is not hard.

I have a husband who loves me, and who is so patient with me and my many idiosyncracies.  I find joy in the stupidest things - from finding a clutch of snail eggs on my aquarium wall, to watching my bunnies leap over each other in the yard.  I pulled the weeds in the front of my home today, feeling pride that I have a place to keep nice.  I admired my daughter for minutes on end this evening, watching her jump around in her pajamas and yell out colors.  I love watching her grow.  I am at peace.  And, most of all, I am happy.

I know a large part of my happiness is due to my medication - when I was stricken with anxiety 24/7, I could count the days that I felt well because they were so few that I had to take stock of them.  Just before I was diagnosed with MS was one of these times - and it came crashing to a halt because of a public panic attack.  I don't have those any more.  Things have somewhat swung the other way now, to tell you the truth - I watch emotional films and listen to sad songs and do not shed a tear.  I haven't really cried in months.  I welled up at the end of "13 Going On 30" the other day for about a minute - then it dried up.  I don't expose myself to feelings of anxiety or sadness on purpose any more, and I think this is a big reason why my brain doesn't process those emotions as readily as it used to.

I am very pleased that, at 30 years old, I am content with where I am in life.  I love my job.  I love my family.  I love my home, my pets, my plants.  I even like myself most days, a huge change from where I have been.

No - I am not healthy.  But my life isn't hard. 
I know plenty of healthy folks who are beautiful, put-together, and miserable.

There is a balance of life - what we are given, and what we do with it.  I choose to make the most of what I have been given - even if that set of cards seems like a shit hand at first.  You never know what will be wild!

Love all, MSloan

ChatMS 3/28/2016

ChatMS this week was all about cognitive issues.  I'm a few days late, but I'm still trying to get the word out there!
Love to all!  Feel free to copy/paste the questions to your own blog to spread the word!

....

Q1.) Have you ever experienced cognitive issues (long/short term memory, infor processing, word finding, etc) because of your MS?

I have - and it's one of the most devastating symptoms, and one of the hardest to prove to others.  This is an easily invalidated symptom for people to say "oh, that happens to me sometimes, too," and they just don't "get" it.

Q2.) What kinds of cognitive issues have you experienced?

I have struggled with word finding, concentration while reading and listening, and most persistently - names.  My cognitive issue of word finding was thankfully short-lived, and only stuck around for about six months.  I was doing a lot of writing at the time, so it was obvious what problems I was having while going back through and editing.  For example, I was writing part 3 of my 'novel' in the midst of the worst parts of treatment, but had consistently described one particular character's outfit as being made of leather.  Well, apparently one of my word drop-outs was leather, because I inexplicably started describing part of his outfit as including "boots made of hide."  Yeah, you can say what you want about fluffy descriptions, but this wording made no sense in the context of the story.  I couldn't even think of "suede," so I picked "boots made of hide," when I couldn't recall "leather."  That's the one I noticed the most, but it wasn't the only example.  Thank goodness that didn't last long!

I also cannot remember names to save my life.  I can tell you what movie an actor was in based on a voiceover for ten seconds, but I can't tell you their name.
Except Tom Hiddleston.  I can't forget that name, haha!  But it's very embarrassing with patients I see constantly to still grasp for their name every time.  It took me weeks to learn all my coworkers' names - and there's only about 8 people in my office.  When it was really bad just before my official Dx, I couldn't remember four women's names.  Four!!

Early in my pregnancy (long before 'pregnancy brain' can be blamed) I had an early flare and dealt with a terrible MS fog.  One day I stood in the kitchen, about to put the liquid cheese in my velveeta bowl for lunch, but something just.... didn't look right.  I couldn't put my finger on it.  It took me a solid five minutes of looking at the bowl before I realized: I didn't cook the noodles yet.  I'm very glad that the fog didn't last long!

Q3.) How long had you had MS before you started to experience cognitive issues?

I've had symptoms since 2010, that's about when I started to get name drop-out.  But the really bad word finding was all at my big flare in early 2014.  Concentration may not be related to my MS so much as my hearing loss, I have always struggled to pay attention while reading and I have to work that much harder while listening.  I would like to blame that on my MS but I don't think so!

Q4.) How have cognitive issues due to your MS impacted your daily life? 

See the answer above re: name recall - that's the biggest thing for me, consistently.

Q5.) Did your doctor talk to you about the potential of having cognitive issues do to your MS?

Psh.  No way!!  I think so many MS symptoms are shirked as something else because the disease process is different for everyone.  I think of this when I consider all the digestive issues, including MS Hug, that I've suffered from, only to be told that it wasn't my MS.  I don't want to blame everything that I deal with on the MS, but I know what is because of the MS and what isn't.  It would have been nice to be warned about cognition early on.

Q6.) Have you ever been tested for cognitive issues? If so, how?

Not by my neurologist, but I participated in a study at the local university just after diagnosis.  One of the tasks was on word finding - remember, this was at a time when word finding really was one of my struggles.  I'll never forget looking at a card with the word, 'panacea' on it, and being asked to describe it.  I know that work, I know what it means, I know that it can be synonymous with "solution" and "safeguard," but I couldn't think of it.  I told the kid doing the research, "I know what that word means, but I can't tell you what it means."  About a week later, I had Steve ask me to do a similar task (my husband Steve is a psychologist) and I was able to complete them all.  Again, very grateful that this issue didn't last forever. 

Q7.) Is there anything (stress, temperature, time of day, etc) you think increases your cognitive problems?

Stress - and current flares.  When I'm flaring, it's much worse.  And pregnancy, haha, because now I have that to contend with!!  I have started slurring my words and mixing up my consonants.  I'm going to blame this on pregnancy until the baby comes before I panic.

Q8.) What measures do you take to improve your cognitive problems? 

I kept writing.  I do the blog and am always learning.  I tell myself not to give up, and practice my music.  All these things should improve my overall cognition.

Q9) Cognitive issues are invisible & can be hard to explain to others. Have you had any difficulty explaining/getting people to believe you?

Absolutely!  I have heard so many times, "Oh well I have dealt with that," but many of these folks forget that they are over twice my age.  At 25, I should have been able to remember all the names of the 10 women in my class without struggling.  At 27, I should have been able to remember the four names of the women I worked with daily - who had nametags on their desks!!  I should have known that putting the cheese in my macaroni before cooking it was not correct.  This is not 'normal' for anyone, cognitive dropout is not a myth - it may not affect me daily (thank God because I would probably lose my job if I had too much trouble beyond remembering names) but I'm not making it up!

I'm glad we got to talk about cognition with MS this week - please remember to spread the word!
Love to all, MSloan

ChatMS 3/21/2016

Hey all!

I have less than a month until this baby's due - whew!!  I finally heard from my neurologist, and we're going to do another baseline MRI when she is born, with contrast.  I'm going to keep my fingers crossed that I don't have active lesions, and I can be put back on a DMD rather quickly.  I had hoped that I would breastfeed for much longer than I'll be able to, but hey - not all children are breastfed, she won't die poor and lonely because of it, and there are millions of formula babies that do just fine. 

We'll be okay.

This is tonight's ChatMS - it is all about "D-Day," or the day we were diagnosed!  My blog has chronicled this well, but I'm happy to answer these questions.  I didn't get a chance to participate live, but feel free to copy/paste the questions on your own blog to keep the conversation going!


Q1 – When did you get the Multiple Sclerosis diagnosis? At what age? 

February 28, 2014.  I was 24 years old, but had been symptomatic since late 2009, early 2010.  Two days earlier (that Wednesday) I woke up with numbness down my entire left leg, and my right foot.  It took me three days to get to the hospital; I had tried calling a few neurologists, but none of them called me back.

Q2 – Were you aware of what MS was at that time?

I knew more than most.  I see MS frequently at my job, and just before this happened, I saw an influx of MS patients.  I was diagnosed during what I later learned was called "MS Season" in the neurology office I went to.  It frequently flared at that time of year, which is odd.  The first time I began learning about MS was in early 2010, when I first started experiencing symptoms - I was told explicitly during that class, "Don't go home and think you have this, because you'll think you have this!"  And so I ignored what I was going through until I couldn't anymore.

A couple months before my D-Day, we got a new front office person at my work.  She was hired, and then told us that she had MS, and had to miss a few hours at the end of every month to get her infusion (I later learned she was on Tysabri).  My heart skipped a beat when she told us she had MS - I felt like it was yet another sign.  She was the first person to "figure out" what was going on with me, and was the first one I confided in that I thought I had MS, besides my husband.

Q3 – Where were you when you got diagnosed? Was anyone with you?

It was a trip to the ER that did it.  On the off-chance that it wasn't MS, I didn't know how serious the issue could be - thrombosis, tumor, nerve pinch.  I called the two most important people in my life: my husband and my sister.  I later got a lot of flack from my mother for not inviting her - yet more support for why I didn't do so!  They sat with me for the entire almost 8 hours of waiting through tests, MRIs, no food, stress... I will forever be grateful.

Q4 – What were your initial thoughts after hearing “You have Multiple Sclerosis”?

"Great, I knew that, what do we do about it?"

Q5 – What were the reactions of your family members and/or friends?

A lot of silence.  The few friends I told that day (because I asked about neurologists and what they thought I should do when no one called me back) were somewhat surprised, but then clammed up.  A couple well-meaning friends started offering advice about my diet, exercise routine, medications.  My husband was so thankful it wasn't a brain tumor that I don't think it sunk in.  My sister, who was so helpful to be there but doesn't handle things like this very well, simply said nothing.  I know she was very uncomfortable about it and didn't really know what to do or say.  It wasn't long before she started in with the diet thing, too.  I'm glad that phase is pretty much over!

Q6 – What did you do to learn more about MS after you were diagnosed?

You know, as I had seen so many people with MS, the physical disability part was something I was somewhat spared from.  Which is odd.  I didn't really understand the reality of what COULD happen until a fellow student said, "I don't know a whole lot about MS, but I know that people with MS eventually can't walk."  That terrified me, I had never heard that - I refuse to believe that, because it simply isn't reality.  Yes, it's a possibility.  But it's also possible that I will be hit by a car tomorrow.  Time will tell, I guess.

I also had to learn a lot about the realities of feeling bad because of the treatment instead of the disease.  I absolutely would choose numbness and tingling over a "Solly Headache" any day, especially with how the steroids affect my tastebuds and sleep patterns.

Q7 - If you could go back and tell yourself one thing on your D-day what would that be?

"Reduce your stress, keep this to yourself, and know that things can always get worse.  This isn't the end of the world, just the beginning of a new understanding of yourself.  You are validated, don't tell others and make a big deal of it - because they won't comfort you.  Comfort yourself."

Q8 – What tips or advice do you have for those newly diagnosed or going through the testing process?

See above.  This truly is the best advice I can give.  You may be more disappointed with the lack of reaction from your friends and loved ones than you ever would from comforting words or actions - they don't understand what you're going through, and they may not be able to support you in the way you think you need.  So find support with other MSers, not your friends; and do NOT tell prospective employers.  A week after my Dx, I lost a job interview because I was honest about why I couldn't fly out right away (I had been advised not to fly that first week).  So sad.

Love all!  MSloan

The Power of ... Empowerment

My boss frequently gives me books to read on leadership and working with customers - which is typical when you do anything even remotely sales-related.  While I normally scoff at such things, as I feel many of them teach you to be manipulative instead of genuine, this latest one is much different.

This book is called, "The Power of TED," and it reads like a novel instead of a self-help.  It's a physically small book, but one that has already hit me deeply.

I have mentioned before how I feel about fellow MSers who "gripe" about their disease, for lack of a better word.  I'm not talking about those who genuinely struggle with new things, have physical disabilities, or even those who are having a bad day.  Not that.  I mean those who are in full remission and still have the nerve to say that their MS disables them every day, or speak as if there isn't such a thing as  "good day" in the mix.

I know this makes me sound like a bad guy, but let me explain further.

I am fully aware, absolutely, that MS is a constant companion of those who struggle with it.  You can't make the scars in your brain go away any more than you can make stretch marks disappear.  They're always there, even if they are less visible.  They're always going to affect you somehow, either in how you budget your time and your energy, or in how you physically feel.  But my comment is less about the realities of living with this disease, and more about how our attitudes effect its manifestation.

This book has reminded me of a principle that I used to recall daily.  Making oneself a victim every day is not a desirable trait, neither in said victim nor their loved ones.  It is an ugly place to put oneself.  And while some victimization is genuine (i.e., physical and emotional abuse), presumed victimization is the prevalent sort that people "get tired of," including ourselves.  And it can make us feel ugly to admit that we do it to ourselves, and not the other way around.

For example, in the case of my own MS.  I currently, right now, still have active optic neuritis in my right eye that makes it difficult to see.  I learned today that I get carsick more than I used to because of it.  It affects my ability to balance myself at night in the dark, which is important at 8 months pregnant with near hourly bathroom breaks!  It affects my ability to see details and color accurately.  I cannot read well on a screen, troublesome for a person with two novels in the works.  It would be easy to pull out this "trump card" of sorts when listening to someone complain about something innocuous, like traffic or the weather.  It would be easy for me to stop creating altogether.  It would be easy to say "I can't do it," blame my MS, and not have anything positive to say.

Yet, I choose daily not to be a victim of my circumstance.

Circumstances don't have personalities.  They cannot victimize you personally.  I saw a twitter poster a few weeks ago that essentially mocked my constant motto of MS - "I have my disease, it does not have me."  These folks were sending messages back and forth, "Gee it must be nice to not be owned by your MS, because it kicks my ass daily."  I get that, I truly do.  I could go off on a laundry list of all the things that my MS has done to piss me off just today.  But I won't, because I would be giving it permission to take over my day if I did that.  I would be giving it the power.  Surrendering our psyche to the "inevitable circumstances" around us just because we "lack control of it," doesn't mean we can't control how we react or view the problem.

I have a friend who lost her husband last year.  Even before this happened, she was somewhat of a classic "Debbie Downer."  What would normally be considered a tiny inconvenience turned into a huge disappointment; heaven forbid she have a long commute, or it rain too much.  She had no tolerance for disagreement or the unexpected.  I will never forget the first time she truly got under my skin with this routine; it was a great day, and I came into our office declaring how amazing it was that we had the privilege to help people at our job all day long.  She responded, "Yeah, until someone throws their hearing aid at you."

That very response was a choice that she made - a choice to focus on the negative instead of seeing the great things that could be done daily.  When her husband did pass away, these same traits got all the more worse.  I exercised patience with her as much as I could.  We had to choose a depression screening tool for our patients, and she lamented over how she would quickly fail the screen: "Not getting sleep?  Easy, I don't sleep anymore.  Losing interest in things you once loved?  Of course, I'm alone, what's there to look forward to."  This was over a year after he passed - I am NOT suggesting that mourning has a time frame, quite the contrary - but how much misery was she causing herself by telling herself every day that nothing could get better?  Every encouraging word I offered was countered by a dramatic declaration.

I recently began a "Positivity Blog," where I describe four things about my day and myself that help me grow my self esteem.  It's a form of cognitive behavioral therapy, as my psychologist husband has pointed out that I have a self-destructive inner monologue.  This isn't something I express in how I act around others, but only in how I critique myself and my projects.  When I mentioned it to this coworker, she said, "Mine would be blank."  This is another choice.  She looked at the schedule of patients for this week, and had something negative to say about every single one of those patients.

People have a tendency to perform how you expect them to perform.  Instead of choosing to view those patients as opportunities to prove herself and her skills to make them happy and meet their needs, she is stunting her abilities by setting herself up for failure.

We make choices daily, to be victims of our circumstance or creators of the positive.  I am choosing to be a creator of the positive.  I am choosing to have more control over how I feel about my MS than to let it take control of me.  I cannot choose the course that it will take, I cannot choose how my baby will act when she's born, I cannot control my mother's words to me.  But I can control what I do about it, how I prepare myself for these problems, and how I handle negative experiences.

I hope my rambling made sense, and that I don't seem like too much of a devil's advocate.  But the path to healing isn't easy, it isn't pleasant.  We have to admit that we are at fault for some things, because we can't blame everyone else and be innocent all the time.  May you all choose the path of creation, not victimization.

Love, MSloan

MSminds Chat - 3/16/2016

I found another chat on Twitter today - this one is called MSminds! 
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)

Q1) Has MS had an affect on your mental health?

Yes and no.  I have always suffered from depression and anxiety, but it definitely has spikes.  It hit a huge peak right before my big flare that got me diagnosed.  However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation.  Saved me a lot of pain.

Q2) What has your experience of mental health support from healthcare professionals been like?

Surprisingly good, at least as far as my MS is concerned.  My first neurologist asked me if I wanted to be put on an anti-depressant.  It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety.  I initially said no - but knew that I needed to do something.  I told her, "Actually... actually yeah, yeah I do need an anti-depressant.  Thank you."  Best decision I ever made.

Q3) What do you do to boost your mood?

 I have started writing a "Positivity Blog," every single day.  I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow.  Really is starting to help.

I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."

Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?

My blog!  http://itoocanlovemyself.blogspot.com/

Q5) What more could be done to educate MSers about looking after their mental wellbeing?

Let them know that there is nothing scary about medicating for depression/anxiety/etc.  I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).


Thank you all, this is a really important topic!  I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
MSloan 

Optic Neuritis - The Saga Continues

Anyone who has ever had to deal with Optic Neuritis will tell you that it isn't clean-cut.  I have good days and bad days with it, and now that it's been 15 weeks since it began, I'm starting to come to grips with the very real possibility that I may never really get my eye back the way it was.

As an artist, this is somewhat mournful, since I don't see detail the way I used to.  Even with both of my eyes together, there is a constant sense that something just isn't right.  Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well.   I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.

How I'm seeing, Good Eye Vs. Bad Eye:

When you have something like ON, once you mention it, that's all anyone wants to hear about it.  When it first occurred, my coworkers would ask how my eye was, for about the first two weeks.  When it didn't improve, they stopped asking.  I haven't been asked about it in over 10 weeks.  Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition.  I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.

That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others.  It's awkward.  No one wants to talk about it, and it isn't real to them.  It can't "be that bad."  But of course they feel that way, they don't have to live with it!  It just isn't real.  And honestly, it wasn't real to me in regards to my patients until it reached a certain point.  Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!

My positivity blog is helping with how I deal with the day to day.  I wish I wasn't facing drama at my workplace, but I am trying to rise above it.  It is so petty to fight with one another as adults, isn't it?  There are so many much more important things.

I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea.  I know everyone's ON is different - this is very close to what mine actually looks like.

About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan

ChatMS - 3/7/2016

Good evening, all!
I am finally getting around to typing up yesterday's ChatMS - it's been a busy day!

I've been supporting MS Awareness Month on my facebook page, posting a fact every day.  Don't know if that will continue as regularly, but I want to educate the people around me.  Not just to benefit their perception of my experience, but so they understand that not enough awareness = not enough progress.  We make such a big deal over things like breast cancer (which is absolutely worth the fuss, I'm not saying it's not!) but MS is so invisible, it doesn't get the funding it requires to make real progress in treatment and cure.

It was the celebration of ChatMS' 1st year in existence!  Please feel free to copy/paste the questions into your own blog and remember to keep the conversation going!

Q1: It’s been one entire year since #ChatMS has launched. Can you believe it or what?

Woo, go #ChatMS!

Q2: How long have you been participating in #ChatMS?

I've been participating for about six months!  I came across it one day when I just happened to get home from work early.  In California, the chat starts at 4 PM.

Q3: How did you hear about #ChatMS and what made you join?

Like I said before ... I just kinda stumbled across it on twitter on a day that I was home early.  I had recently deactivated my FB account and the people I followed were big #ChatMS participants! 

Q4: Do you remember what our first (or your first) #ChatMS was about?

You know, I really don't.... I know one of the first ones was "for the ladies," and the very first one I participated in was run by a member and not the usual leaders.  I remember answering all questions fervently; I think part of it might have been about reactions from others about potential disability.

Q5: What does our weekly chat about #MultipleSclerosis mean to you?

I love #ChatMS and how it allows me to connect with others who have this disease.  We have it, it does not have us.  But it's comforting to not feel alone - which is common when none of your friends have any clue what this is really like.

Q6: We brought wine to the anniversary party. If comfortable, share a selfie showing how you’re celebrating!

(Not applicable for post-chat commentary)

Q7 - What can we do to improve #ChatMS

I love seeing how every week is different - I'd like to find out more about people who have had unsuccessful treatments and especially "failed" steroids.

Q8 - have you been able to make connections and build a stronger support system thanks to #ChatMS?

Absolutely - and it gives me great blogging material!!  :) 

Q9 - What can we do to get others to join future #ChatMS sessions so you can gain more insights?

Maybe have more than one per week, in different time zones.  Those of us out here on the west coast can't participate if we're working!

That's all, folks!  Keep the conversation going!  :)
MSloan

Coming Out of the MS Closet

Tonight, I finally did it.  I finally just bit the bullet and stopped beating around the bush.  I let it be known that I had Multiple Sclerosis to my friends on Facebook - which is scarier than it seems.

This is what I said, and I hope that I can encourage my friends to keep spreading the word and the awareness of MS.  No offense, cancer peeps, but breast cancer doesn't need awareness, it needs a cure - MS truly needs awareness, or we'll NEVER find a cure!

Love all, MSloan
..
In late 2009, I started to notice something. I started to feel sick, all the time. I started to struggle to see the tv screen, and I had nearly constant headaches. In January 2010, I started to have daily nausea, a symptom that debilitated me and made me constantly paranoid that I would get sick in class. I got glasses and changed my birth control. I changed my diet and carried pepto bismol tablets with me everywhere I went. Nothing changed the nausea. It got so bad, I saw a movie with my friend and I made her sit in the theatre with me for about fifteen minutes before I felt well enough to stand up to leave. I once had to call Steve to come rescue me from the Safeway five blocks from our apartment because I literally could not stand up any longer, and I abandoned my cart in the pharmacy and hustled to my car.

It was a scary six months. But at the end of the semester, I felt better. I had cycles like this one intermittently for the next few years, rearing their ugly head again most noticeably in November of 2013. I had avoided the problem, and avoided telling anyone I knew what I was feeling, for fear that i would be told it was "all in my head," or that I was "just stressed."

Two years ago, on February 26th of 2014, I woke up and could not feel the left side of my body, nor could I feel my right foot. I tried to ignore it. Later that night, I called an old friend and texted my sister, and was told it was probably nothing, which was the response I got from the few people I told that day. But I knew what was wrong. I had known since that time that I call, "when I got sick," those early months of 2010 when I couldn't ignore my symptoms any more, and went from doctor to doctor, learning nothing, until my symptoms went away on their own.

I knew then, and it was finally confirmed in an Emergency Room visit on February 28th, 2014. I had Multiple Sclerosis.

Since that time, I have had symptoms that have come and gone, some that have stayed, and some that only arise when I get stressed. I have lost vision, I have lost words, I have had dizziness and now have constant tinnitus. I have had days when I could not get out of bed. I have had weeks where whenever I leaned over, I had an electric shock go down my spine, every single time. I was told my illness would subside while I was pregnant - it has not. You can't see my illness, but it is very, very real to me.

People always share "Save the Ta-Tas," and say that Cancer awareness is an important cause. While I absolutely support awareness of various cancers and illnesses, from autism to seizures to ataxia, Multiple Sclerosis is a largely ignored disease because of its invisible nature. You can't always tell when someone has MS. Did you know that many of the people that you scoff at for parking in the Handicap spaces struggle with MS, and it takes their every breath to walk just to the door? That they might not be able to feel their feet, or their legs, or their hips? That they might have a suffocating squeeze around their abdomen, a symptom inappropriately called the "MS Hug," which could bring them to their knees at any minute?

March is Multiple Sclerosis Awareness and Education Month. I ask that you do one thing - if you have a question about my MS, ask me. Don't make assumptions, and don't google it. Just ask me. Because the more people who are touched personally by this disease, the better the world will be - because awareness brings research, it brings discussion, it WILL bring a cure.

Wear ORANGE!

ChatMS: 2/29/2016

Happy Leap Day!

Q1 – March is MS Awareness month. What will you be doing to spread Multiple Sclerosis awareness?

I have signed up for Walk MS this coming April (though my due date is just three days later, yikes!) and I intend to 'come out' to some more friends who don't know about my diagnosis.  Like my depression, I gather many will be surprised, as this is just as invisible.  If we don't let the people we love know our struggles, how can we hope to gain widespread acceptance and understanding?

Q2 - What have you done in the past to raise Multiple Sclerosis awareness?

This blog is my best way to raise MS Awareness - and I have volunteered in the past for the local Walk MS event!

Q3 – Do any landmarks or cities near you “Go Orange” (or red) for MS Awareness Month?

Rats - no.  But I certainly will be going orange this month with my brand-new, sparkly orange nail polish!!  :)

Q4 – What do you think is the best media to spread MS awareness?

Face-to-face, absolutely.  I have spoken with many patients about my MS and been thanked for opening up about my struggles with them.  Mind you, I don't ever discuss it with them as "poor me, look what I'm going through," but I do bring it up if they say they are alone with their invisible illness.  When we battle our illnesses together, we become a team, and they trust me more as a provider.  I wish I could connect with my own doctors the way I connect with my patients, because then I would really feel like I am being listened to.

On the other hand - digital medial makes widespread effect possible, so I can't complain about good 'ol FB, twitter, and blogging, of course! 

Q5 – When asked, how do you describe Multiple Sclerosis?

I say that my brain likes to eat itself!  I talk a little bit about the myelin sheath around neurons, and how MS is a condition that breaks down that myelin.  When scar tissue forms, or sclerotic tissue, it creates a short circuit in the nerve fiber.  So, literally, multiple areas of sclerotic tissue, or Multiple Sclerosis.  I say that it affects me in many ways, from debilitating fatigue to numbness and tingling, and that at 20 weeks pregnant, my MS half-blinding my right eye and it is still recovering.  I mention that everyone's MS is different, however, and that while there are some who are not as effected as I am, there are just as many who are much worse off.

Q6 – What items can be frustrating when raising awareness?

"But you look fine, so it can't be that bad."
You have no idea what this actually feels like.  I don't want to be one of those people who says, "I carry my MS with me every single day like a burden on my back," because honestly, some days are simply not like that at all.  On my great days, of which I usually have many in a row, I forget about the MS and just live.  It's an excellent feeling.  But when I am feeling shitty, I feel REALLY shitty, and I have to keep face about it because I can't be 'sick' all the time, even when I feel like it.  I've felt intermittently sick since late 2009.  Before that, I was a generally sick kid, always getting sinus infections and having ear problems.  I'm really ready to not be sick anymore.

The other thing is the unspoken truth of why issues like MS stay stagnant - if it doesn't apply to you, you're less likely to give a damn about it.  When I start telling people I know about my disease, I'm sure they'll start to care.  But you have to have a reason to get behind something.  People usually have a reason to get really 'into' wearing pink for breast cancer.  I want more people to find reasons to wear orange!

Q7 – What would you consider a successful MS Awareness effort?

Getting anyone that I actually know, in my real life, to participate in MS events or look at MS research.  And not compare the different people they know to me; have a healthy respect that everyone's case is different.  I can't tell you how sickening it is to be told, "Well, my friend so-and-so has had MS for forty years and she is just fine," I could just as easily retort that another friend of mine who is my age has been in a wheelchair for five years because of her MS.  Everyone's case is different.  I know you think you're helping when you only want to focus on the possibility that my pregnancy could make my MS disappear, but as that has been the opposite case, I'd prefer if you just shut up and listened to my struggle instead of trying to fix it to make yourself feel better.

Q8 – Where do you direct people if they ask for more information on Multiple Sclerosis?

I'll admit, I wish I did more to spread awareness in this respect.  But I have so rarely been asked for 'more information,' this feels like an empty question.

That's all, folks!! Have a great week -
MSloan 

Two Years Is Not Very Long

Good morning readers,

Today marks 2 years to the day that I woke up and could not feel my left leg.  Technically, yesterday was, but this marks the day that I really 'knew' what was going on.  I had an inkling the day before, but when I woke up for the second morning and still could not feel my left leg and my right foot, it was confirmed.

Something was wrong ... and I knew instantly that it was MS.  I had known deep down since January of 2010, but two years ago today I had no more room for uncertainty.  I had mentioned it to my coworker, who had MS, and she nodded at me in a knowing fashion.  I had hoped to keep it under wraps, but my boss walked in on us talking about it and she also knew what was going on.  It was a sad and oddly supportive time.  I called a neurological group close to where I was working, and got no answer - I was not sure what to do, or if it was safe to wait. 

Two years ago tomorrow, I received the official diagnosis from the emergency room (though they would say they gave me a 'tentative diagnosis,' we all know what really happened).  I had Multiple Sclerosis.  I read the report describing several 'foci of restricted diffusion,' the title of this blog.

Today, in juxtaposition to this memory and scary time, I am having a baby shower for my impending child.  I am 32 weeks along and she is kicking away today.  I am just as scared as I was two years ago, but for entirely different reasons.  I have a new reason to be excited for the month of March, and it isn't job interviews and trips.  It's getting ready for my Tesla.

I wish I could say that in these last two years that I have really learned a lot.  I have, but so much of it has been negative that I choose to try and focus on other things.  My mother has declined into a complete state of paranoia, frequently.  I am now reading a book on healing from a narcissistic parent, and I'm finding that helps a lot.  Makes me feel less alone, though I know I have a long way to go before I will be really mentally and emotionally capable of caring for my daughter the way I should.

Wow, February seems to be a big month for me - two years ago tomorrow I was diagnosed, today is my baby shower, Monday is my 8 year anniversary of being with my husband.  It's a lot of things to take in!

Love to all, MSloan

ChatMS - 2/22/2016

Tonight's ChatMS on Twitter was in a different format - forgive me if I forgot some questions or missed some, it was not very clear what questions there were!  (note to the moderators: keep this in mind for those of us who participate after hours and want to follow the conversations :) )

Enjoy away, and feel free to copy/paste to your own blog!  Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!

Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?

I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time.  On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!

Q2) How does everyone handle fatigue?

I have to learn to say 'no.'  I'm not very good at this, haha!  But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go.  If I overdo it one day, I won't be able to function the next! 

Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?

HA!  This is one of those things I should be doing, but am not.  I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits.  But as for real MS symptoms, not really.

Q4) What type of exercise is easiest and benefits your MS the most?

 Yoga, yoga, yoga, yoga.  Yoga all the way.  Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.

Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?

Dear Lord, no, but I certainly hope I never have this one.

Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?

Just try to sleep whenever.  Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!!  Oy vey.

Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?

You mean I'm not the only one??!  I have struggled with constipation for so long I can't even tell you.  Pregnancy again makes this one all the more enjoyable.  Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in.  What was already bad was made monumentally worse.  Let's just say I should invest in Preparation H and leave it at that.  #TMI #Sorry

Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?

I used to get headaches daily.  They usually hit around 3 PM or later, and were tension related.  I felt them on both sides of my head, a dull ache.  When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them.  After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides.  I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork.  Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy.  I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.

I do get migraines, once in a blue moon.  They give me auras and tend to hurt on one side of the face.  Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups.  Just wait it out and pray you can see afterwards.  This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt.  I think I prefer the blindness to the pain, honestly.

Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?

My MS is not my whole world.  I talk about it because it makes me feel less alone.  I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.

I'm not faking, and I don't want your pity, or even your attention.  But acknowledgment that this is hard would be very validating.

Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?

I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it.  I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response.  I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.

Q11) Fill in the blank... I have MS, but MS will never stop me from __________!

Creating, in one medium or another! 

Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?

I loved my Gilenya.  As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days.  It did the trick for me, as long as I could keep my stress level low.  I would like to go back on it after my baby is born, if my neurologist is willing to work with me.

Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?

I only got this a few times with my previous numbness, and it was very disorienting.  Like your foot "waking up," the worst part of it.  But all the time.  I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step.  So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.

That's it for this week, folks!!  Tune in next time!
Love, MSloan

Keeping A Record

I have been on a path of healing.

My MS symptoms have somewhat come and gone for the last week because I got a cold, but I am fortunate that the signs haven't been worse than some general annoyances with numbness.  It's been well over 10 weeks now with distorted vision in my right eye, and some days are better than others, but because I haven't been able to treat the inflammation I am trying to come to grips with the likely fact that my vision will never be the same again.  As an artist, that's very painful.  But I'm trying to move forward, and not stay stagnant with my feelings.

Facebook can be an excellent record keeper, did you know that?  As I have been getting older, I have become less whiny in general over my circumstances.  But six years ago, I wasn't as disciplined, and I wore my hearing on my social media sleeve, as it were.  Today I went through late 2009 and early 2010, and found a lot of my 'initial symptom' complaints that I keep speaking of - struggles with near constant headaches that felt like migraines, getting glasses, feeling moody and irritable, and as the semester began in early 2010, the nausea.  I used to go through my facebook to find the last time I had complained about my period, only to find I hadn't had one in five months!  As annoying as you might find your 'friends' complaining, keep in mind that it's a way to keep a record.  And it can end up becoming very important if your persistent symptoms lead to a diagnosis down the road.

I started reading a book yesterday called "Will I Ever Be Good Enough?" about daughters with narcissistic mothers and learning to heal.  This book describes me and my experience to a T.  I  feel that much more blessed to have found it, and to be able to acknowledge my issues head on before my own daughter makes an appearance.

I hope you find your healing as well.  Love to all,
MSloan

ChatMS 2/8/2016

This week's ChatMS was all about relapse triggers - something I have learned a lot about.  Remember to cut/paste the questions to put on your own outreach, and spread the word!


Q1 – The cause for MS is unknown, but there are theories. What do you think is the biggest “trigger” of MS? (Genetics, diets, etc.)

This is an excellent question.   Some people believe it is all about the environment you grow up in, but MS is really an overactive immune system, not one that is under-functioning.  It would make the most sense that it is somehow brought on by a virus caught at a young age that matures in young adulthood - in fact, there may be several different subtypes (more than the differences between primary progressive or relapsing/remitting) as we currently know them.  I grew up in a very sunny state and spent plenty of time outside so I don't believe the Vitamin D deficiency piece, more that the environment is home to many different insects and viruses that we have yet to identify.



Q2 – What have you found that supports your theory?

See above - where I grew up debunks some of the theories about Vitamin D.  But with the similarities between Lyme Disease, Fibromyalgia, Multiple Sclerosis and Lupus, the most obvious connection is a bacterial or viral cause that is spread early.  I was a very sick kid, an underactive immune system is unlikely to turn on you suddenly without cause, and it makes more physiologic sense that a virus would reactivate in times of stress or heat, which promotes multiplication.

Q3 – When it comes to relapses we know several things can be triggers. What seems to trigger relapses you have had?

Stress is the number 1, number 2, and number 3.  Absolutely.
We have a tendency to forget that our brains interpret stress differently than our hearts do, if that makes sense.  The things that make us feel 'stressed out' can be negative, but our bodies respond to positive stress the same way.  My biggest relapse happened right before the most important month of my graduate career - I was performing and speaking at a conference, I had several job interviews lines up, I was presenting a poster at another conference, and had 4 plane trips planned.  Right before this, my left side failed.  I had to cancel the first trip and, therefore, the first job interview.  I lied about the rest.  In retrospect, I should not have gone to the first conference, either, but I couldn't jeopardize my future by passing up those opportunities.  None of these things made me feel 'stressed out,' but it still hit me harder than anything I could have imagined.

Q4 – What have you done to avoid these triggers?

Honestly?  In my case, it was moving away from my mother.  She is still the most major stressor in my life and it is not coincidental that when she upsets me, I have flares.  When I was first diagnosed, I 'failed' steroids twice, which is to say I had 2 rounds of Solu-Medrol and my lesions tripled in size or grew new ones.  I have yet to meet many people who have failed the treatment like I did.  Not a coincidence that my mother was more present in my life that month because of my diagnosis.  It is very important that I am aware of her effect on me.

Q5 – Some mentioned this already, but stress can affect MS symptoms and relapses. How stressed are you, currently? (Scale of 1-5)  

I am about a 4.  I'm pregnant, what can I say?  :)


Q6 – Over-heating your body can also be a trigger of MS symptoms/relapses. On a scale of 1-5, how cool would you say you are? 

I'm about a 2.  Heat absolutely effects me.  I can take a bath or a hot shower and be okay because it isn't a really long time, but a really hot day is like a nightmare to me.  I have always been heat sensitive, even as a kid.  When I am having an active flare and try to exercise, the rise in body temperature means I cannot feel my feet at all and I get 'springs' in my legs.  Very disconcerting and I worry about falling and hurting others.

Q7 – Has your neuro given you any tips/tricks to help you avoid triggers of MS symptoms/relapses?

 HA!  Does anyone's neurologist really care that much?  My neurologist basically said "I don't know what to do with you" when I had my 2nd flare while pregnant.

Q8 – What tips would you give to others to try and stay clear of possible triggers?

Become aware of what triggers you and avoid it, even if you think it would be worse to be without that trigger.  I didn't want to get away from my mother as badly as I really needed to.  She raises my blood pressure and gives me so much upset.  If it's really hot outside, I deliberately plan to do low-key things that don't involve going outside too much.  I haven't found any food triggers, but I do know that certain multi-vitamins give me MS Hugs.  It is hard at first to eliminate triggers, but is well worth it.  Good luck!


That's  a wrap, all!  Thanks for reading!  - MSloan 

ChatMS - 1/25/2016

This week's Chat MS was just about the new year.  I'm ready for a new start, aren't you?

Don't forget to copy/paste to your own blog, and keep the conversation going!


Q1 – How is life in 2016 treating you so far?

It's going ok.  I'm excited for my baby to come in April.  I'm struggling with my mother.  I'm struggling a little at my workplace.  But in general, things are overall good!

Q2 – Did you make any MS related New Year’s Resolutions? If so, care to share?

Yes and no.  I don't really have New Year's Resolutions - I have themes.  My theme for this year is Acceptance - because there are some things in my life that I truly cannot change, but I can accept that there will be challenges, and I will learn to overcome them.  I guess this does heavily tie into my MS as well as many other things.

Q3 – We are 4 weeks into 2016. Have you made good on your resolutions so far?

I think so!

Q5 – Do you think 2016 will bring more awareness for MS? If so, in what ways?

There is always hope for that - there are already stories of more celebrities with the condition, but I think that because it is still largely an invisible disease, we have a very long way to go for real 'awareness.'  People need to understand that no two cases are the same.  I hate being told "oh, so and so who I've known for many years has MS and is just fine..." I appreciate that you're trying to make me feel better, but really you're just trying to make YOU feel better because my predicament makes you uncomfortable.  It's ok to face the negative possibilities, too, and not view the disease under rose-colored glasses.  It doesn't make the problems go away.

Q6 – What are you looking forward to the most in 2016 when it comes to MS? (Specific research, treatment, etc.)  

My baby is the biggest thing on my mind.  After she arrives, I will be able to focus on what's new! 

Q7 – Don’t change your goals, change the way to achieve them. What is your biggest “Bucket list” item despite having MS?

Well my biggest goal in life is to be a rock star.  Always has been, always will be :)
 https://soundcloud.com/margo_sloan

Q8: Is there a particular symptom you'd like to discuss? What topics would you like to cover in the future?

I really would like to talk about MS Hugs, people who have failed steroid treatments, flares during pregnancy, other atypical experiences.  Lhermitte's sign, and dealing with people around them.

Love to you all! - MSloan

ChatMS 1/18/2016

Hello all!

I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California.  I don't have any issues with that, so I couldn't relate to any of the questions.

If you are affected by cold weather, please tell me your story!  In my case, I only notice issues when it gets above 95.

This week's ChatMS is another one on symptomology.  Please feel free to cut/paste the questions to put on your own blog.  Keep the conversation going!

Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?

Abso-freaking-lutely.  I can't even count on both hands the number of great nights of sleep I have had in the last few years.  Being pregnant compounds this, for sure!

Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?

Insomnia is the big one.  Mostly, when I wake during the night, I can't fall back asleep.  I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.

Q3: What symptoms do you experience that disrupt your sleeping habits?

See above - but I also have frequent urination, heartburn, nausea, dizziness.  Leg cramps!!!!  Not all the time, and thank goodness not all at once.  But these issues rear their ugly head on occasion and good luck sleeping through that.

Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?

Absolutely.  I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes.  I do not believe it contributes to my MS fatigue, which is a beast in and of itself.

Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?

Oh, the fatigue.  The fatigue, fatigue, fatigue.  Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.

I have had depression and anxiety for many years - since I was a pre-teen.  Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed.  It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up.  MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up."  It is a can NOT.  I can NOT get out of bed.  I can NOT get off the couch.  I am stuck right where I am.

I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed.  The next day I could not get out of bed.  I nearly wet the bed because of this fatigue.  I was sitting on my couch and felt what can only be described as a heaviness.  I couldn't get up to eat.  I couldn't pick up my computer or my phone.  I just sat there, at the mercy of my cats.  Exhausted, but not tired - I didn't sleep all day.  And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.

Q6: Have you talked to your neuro about your sleeping habits?

Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.

Q7: Are you on any meds to help you have a good nights rest? Which ones?

Nope.

Q8: If you have extreme insomnia what do you do to help you fall asleep?

Flip my pillow over.  Get up and go to the bathroom, roll my husband over so he'll stop snoring.  Read something very boring.  Climax.  Deep breathing, in through the nose and out through the mouth.  Clench all my muscles in systematic patterns and release.  I have yet to find the perfect cure to insomnia but I keep trying!

Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?

Keep a log of when you get up; maybe there is a cycle to it.  I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM.  If I get up at 3 AM, it's usually because of my cat because that's HIS cycle.  It might not help you fall back asleep right away but it's relatively amusing!  And know you aren't alone.  Keep a bottle of water by the bed and practice good breathing techniques. 

ChatMS - 1/4/2016

First ChatMS of the year!  Please feel free to copy/paste the questions to your own blog, and remember to keep things moving and the conversation going!  Happy New Year, everyone!

1) There is a phrase that says “MS stops connections, but connections stop MS”. What are your thoughts on this statement?

This is absolutely true!  There is no hope for the progression of treatment if we don't talk about it and stand together as a population worth fighting for.  We are a minority.  And science will ignore us if we don't make a stand.  I think that hearing loss destroys more connections, what makes MS destroy connections is the lack of tolerance or understanding.

2) Where have you made the most MS connections? Are they other MSers, MS Society contacts, etc.? 

Definitely online doing these twitter chats.  I like to think there are folks that read my blog... or am I writing to no one??  oOo....

3) Having connections means you have a support system. We know support is a huge asset. Are you happy with your support system?

Hahahaha, what support system?  I am sorry and don't want to pull the pity card, but my MS makes everyone I know uncomfortable.  Instead of asking me genuinely how I'm doing, they give me a pitiful look and change the subject.  I always end up making THEM feel better when I talk about the everyday struggle.  So I don't really talk about it.  When I have a flare it makes me feel very lonely.  The only reason anyone in my real everyday life knows about my right side blindness (it is improving, albeit very slowly!!) is because I had to cut out of work early to see the opthalmologist.  I didn't want to tell anyone and the manager spilled the beans.  Would have lied and said it was a baby thing but I don't want to curse her along the way.  Can you tell this is a sore spot for me?

4) There may be MSers close by that we don’t know about. Let’s make connections. Where is everyone from?

North Bay of California, represent!!

5) Some may do this already, but what would you think about doing a Pen-Pal type program with other MSers?

I would love to have an MS penpal - - but I have to be honest.  I see an awful lot of MS folks who complain on a daily basis.  Do I have daily struggles?  Yeah, but if I focus on it as being an everyday struggle, it will be.  When I have a good day, it is a great day!  So focusing on the not-so-good days as if it's something to wear like a badge of honor, feels backwards to me.  I would want to pen-pal with someone who appreciates what's positive instead of always focusing on the negative, and posting about how they 'wish they could shed the skin of ms every day.'  When it affects you every day, that's one thing - if you haven't gotten to that point yet, this is why some of us have the issue in question 3.  We are not pitiful, don't make us out to be! 

6) Would you be willing to travel if an event was put together for an MSer get together? If so, how far?

I would be ... as long as it wasn't too disruptive to work!  This will be more difficult with a baby this year though.

7) How important is making MS connections to you? Do you think it’s beneficial? Or would you rather lay low?

I think MS connections are crucial to discussing depression and other struggles.  It is also beneficial for all people with MS to stand together as a community - if we all lay low, we might not be viewed as weaklings, but we won't accomplish anything! 

8) What could be done to further help MSers make more connections, and grow their support system?

The biggest thing that would help MSers make connections would be to END THE ADA STIGMA.  I would love to shout from the rooftops that I advocate for this disease and live with it daily - - but doing so might mean affecting job opportunities in the future, or even affecting my current professional relationships because of ADA.  It's viewed as a progressive and debilitating disease, and while those things are both true it is also one of the most progressively researched diseases as well.  It is no longer a death sentence and there are so many treatments to help give sufferers a normal life.  I want to talk about it, we all should talk about it, stop the stigma!!

Love to all!
MSloan

Twlight of Diagnosis

Today I watched a documentary about environmental toxins.  Because, as a self-proclaimed and certified nerd, I watch NOVA on my days off, pretty much all day.

One of the interviews I watched was a woman who was talking about diagnosis of cancer, and how the patients who are diagnosed with cancer experience this with a sense of overwhelming detail combined with amnesia.  Some may remember every last detail that the doctor said, but can't remember how they got home.  Some could describe their surroundings, the feel of the hospital, the bus ride back to reality, but not the actual conversation itself.

Not to be overreaching, but I believe all life-changing or otherwise major diagnoses are received like this.  I certainly have more memories of my 'diagnosis' day than I would like, but like to think I handled things better than I could have.

In 2010, when things started falling apart, I felt like a walking disaster.  I specifically remember getting glasses for the first time at the end of 2009 and talking with my Planned Parenthood nurse about birth control changes as my moods were erratic.  I had only been on the pill for about five or six months, but thought it was my PMS that was causing me to feel 'strange,' for lack of better adjectives.  I remember sitting in my office and snacking on saltine crackers because I was certain I couldn't keep anything down.

Most horrifyingly, I remember sitting in the very first day of my adult speech disorder diagnosis class and praying with all my heart that we would get out early as it was the first day, because I was so nauseated I was certain I wouldn't make it to the end.  We sat in class for the ENTIRE grueling 2.5 hours.  And when I got home, I was in tears.  What the hell was wrong with me?
I guess now is the time to mention the irony that this was the very class that taught me everything I knew about MS until my diagnosis, and while I sat at my desk every Tuesday and Thursday convinced that this problem sounded an awful lot like what I was experiencing, my teacher repeated over and over to not go home and think we had it.  Huh.

Over the next six months, I learned to deal with my nausea by popping Pepto Bismol tablets every hour or two.  I learned that if I took more than 200 mg of Tylenol at a time, I ended up having an 'out of body' experience.  I had a raging headache that floored me one day, so I took an Excedrin before going grocery shopping - I remember being so disoriented in the grocery store that I left my cart in the pharmacy section, literally ran to my car, and called my husband crying to come rescue me.  I had to be rescued at the grocery store less than a mile away from my home.

I was embarrassed, scared for my heath, but mostly scared that my new marriage would fall apart in the wake of all these new 'issues' that neither of us knew how to deal with.  My sex drive absolutely disappeared.  I was already stressed out from having the relationship with my best friend dissolve shortly before we were married, and I attributed all such issues with that event.  I even thought about writing her to tell her I was sick, but didn't know why.

I remember seeing the movie "Inception" with my good friend Tracey.  I was convinced that what was causing my overall strangeness was because of my diet, so I stopped drinking caffeine and ate hardly anything.  I tried to drink only water.  But I tried to detract attention from my change in diet preferences and didn't complain much to anyone other than my immediate coworker and my husband.  At the end of the movie, I couldn't get up.  I had to ask Tracey to sit with me until I could get up without falling over.  I was mortified.  And I remember being just as freaked out at the movie theatre as I was at the grocery store.

But I was convinced things were better when at the end of May, I felt better in general.  In fact, I felt better until two years later when my GERD became so bad I couldn't eat without pain.  I don't think that was necessarily related to the MS - but it was notable just the same.  Occasional nausea would hit but nothing nearly as bad as before, and I no longer felt like I couldn't do things because of the risk of feeling helpless.  I still didn't take certain types of medications, certain that the Excedrin caused the episode in the grocery store, and I viewed the first half of 2010 as a terrible memory.

Until I went to work one day in November of 2013.  I had been on a road for about twenty minutes when I felt the all too familiar pangs of nausea hitting hard.  I remember calling my husband and saying, "not again, I can't do this again."  It seemed to quell after a few days but never really went away.  My depression spiked for a few weeks, and then subsided.  I felt better than I had in a long time.  I could actually count the number of days I felt good, until I took a trip to Mexico with my coworkers for a conference.  At the conference, I was hit with an anxiety attack so bad that I cried for two straight days.  When I came home, I experienced daily stomach cramps, but distracted myself with painting and writing.

Now I know those cramps were MS hugs, and my flare up began in November.

Before I went to the hospital to get diagnosed, I had lost most of the feeling in my left leg from my hip downward, and in the lower part of my right leg and foot.  This bilateral numbness was what tipped me off to it being an upper motor neuron problem.  I casually mentioned it to a couple of coworkers, with absolutely no response.  I mentioned it to my friend, the same friend who I had lost in 2009, knowing that she was familiar with possible MS patients as the only ones I saw had dizziness.  She didn't think it was MS.  My sister thought I was kidding.  I think my husband was hoping it was temporary and would go away in a day or two.  But I knew better.  It wasn't until the Thursday of that week, the 27th of February 2014, that I said something to the coworker that had MS.

She looked at me with an expression of pity and knowing.  And that's when my boss walked in.  I wish she hadn't, but I guess I wouldn't have had such an easy time afterward if she hadn't.  She pulled me into the kitchen of the office and said, "You can't feel both your legs?  You know what this means, right?  Where the problem is?"  I nodded.  And I said a silent prayer.  I told her I was going to go to the hospital when I heard back from the neurologist I called.

The next morning in the shower, I nearly passed out, and called in to work.  My boss knew why, so I tried not to be too anxious.  I was facing the busiest month, and most important, of my graduate career.  I had job interviews and/or conferences every week in March, all of them out of state.  I had a lot on the line.  So I texted my sister that I was going to the ER (it was a shock, remember how I said she thought I was joking?) and told my husband I was going in.  From there, all I was hoping was that I wouldn't leave without an answer.

When you go to the ER, you always hope it will go quickly.  I was in a brand-new hospital that had just opened just across the street from where I lived (convenient, eh?) and it was a Friday morning at 7:30 AM.  It was virtually empty, and I was seen immediately.  I was on my period and super embarrassed to take off my clothes.  The (very cute, young) ER doctor came in and asked me some questions, most of which I do not remember, and poked at me with a broken long q-tip.  I reported that I could feel it, but was puzzled when he asked, "Is this sharp?" No, it wasn't, until... ouch!  The bottom of my foot felt that sharp point, and I realized just how bad it was.  Not all of my leg was numb, but the neurons were processing sharp and dull inputs differently.  It was such a blur.  Sometime after that, my sister arrived.  I gave a urine sample.  I was ordered to have an MRI, which took an hour and a half to do my brain, cervical spine, and thoracic spine.  I had a very cold and uncomfortable ultrasound to check for DVT.

I returned to the room, and my husband had arrived.  My sister was back, with a box of Good N' Plenty, my only food of the day.  She knows me well :).  And we waited.  We waited for an unknown number of hours, before the cute doctor came back.  I knew when they spent a long time after the MRI that they had found something - whenever a doctor tells you "I have to analyze this," unless it's a blood test, they know the results.  I have to say it with every vestibular test and I always know the outcome at the end.  Your radiologist knows the results of a slow test like an MRI, they just don't have the authority to tell you the results.  He sat down on the end of the gurney, and mentioned that there were a few different causes of my numbers.  One was Guillane Barre.  My ultrasound was normal.  Something about my blood tests being relatively normal, but indicating some kind of inflammation.  The MRI came last.  He mentioned that there were lesions on my MRI that could indicate vasculitis, but most likely they were consistent with multiple sclerosis.

I nodded, knowingly.  My husband apparently thought I had a brain tumor, but this was good news in comparison.  I don't think my sister quite understood this.  I couldn't look at either of them and just looked at the doctor.  "So, what's next?"  He said I needed a spinal tap to help confirm.  I asked if I could fly in a week, he said no, so I had to move my job interview.  He said they were going to come in and give me some steroids.  That's what I remember of the actual conversation.  I remember sending my sister out while I had the spinal tap, which didn't really hurt but was scary.  I remember wanting to sit up in the hospital bed because I was hungry, and couldn't eat my grilled cheese while laying down.  They wanted me flat to keep me from getting a spinal headache.  Then they came in with the Solu-Medrol.  They didn't tell me one side effect.  It was awful.  I remember going home after and driving my car home.  I remember getting ice cream with my sister, who was clearly distraught.  I don't know why it took so long for my husband to get home, but it did.  Maybe he went to the grocery store.  Maybe he picked up dessert, but I don't think so.  I remember giving my sister the lion painting and trying not to cry.  In fact, I didn't.  I don't think I cried about my diagnosis until weeks later, during my second round of steroids.

I wrote this account to verify that my hypothesis was correct - there are some things I remember in alarming detail from five, almost six years ago, and there are some things I barely recall.  I hope that this encourages you to remember your own diagnosis stories.  It may not be you, it may be your kids, your parents, or your friends who want to know the legacy of your story to know that you persevered.

It is now 2016.  I have persevered thus far, and have a long way to go, and intend to love every minute that I can.  May you all do the same!
MSloan

Bye bye, right eye

I am... more than a little bit disappointed.  Well, I guess disappointed isn't the right word.

I feel mislead.

I feel like I have been told from the get-go that pregnancy increases remission of multiple sclerosis, especially as the pregnancy progresses.  Every resource I've looked at talks about the wonders of pregnancy during MS, even if there is an increased likelihood of relapse shortly after birth.

As if that prospect isn't terrifying enough, and has implications about breastfeeding that not a single person talked with me about it, I am having serious relapses while pregnant.

The first I wrote about a few weeks ago; my feet went numb again.  This is very clearly an MS symptom and not due to pregnancy, because I am not heavy set in the slightest, and otherwise have not gained enough weight to cause that sort of symptom.  Usually, that is brought on by water retention and compressed nerves due to weight gain.  I did feel carpal tunnel pain and tingling in my hands, but that was long before I had the feet numbness.  Even when I first found out I was pregnant, I had a symptom that I call 'short circuit,' where I would touch a certain part of my arm and I would feel it somewhere else.  VERY weird.  Like, touch your arm just below your wrist and imagine you are feeling it at your elbow.  Makes you constantly slap your arms thinking you have a bug on you when you're just eating or writing.

Well, now I have had another serious symptom.  I can't see out of my right eye.

Now, it's not like I haven't had this type of thing before; I had optic neuritis shortly after my big relapse in February of 2014 and it was incredibly painful.  Shortly thereafter, I went to Las Vegas for a medical conference, and all lights had halos - it was certainly strange, and I did have double vision intermittently.  But by the time I got home, it seemed to be relatively normal.  I had an optic/cluster headache earlier this year, but thankfully didn't have any visual disturbances.

This time, there is no pain.  I have a headache daily because of my pregnancy and it feels different from my typical tension headache.  This one is more likely hormonal or dehydration, which I try to battle as much as I can.  Optic Neuritis pain is specifically over the affected eye and not a single drug will touch it.  So, for the most part, I am thankful that this one has no pain.

Thursday evening, I was at the grocery store after work when I noticed that something just didn't look right.  I think I took my glasses off at least five times to clean them, to no avail.  I got home and sat at my computer uploading to my Society 6 account and still felt like something didn't look right.  I went to my pregnancy class and thought, "well, maybe it's the lighting in here."  I came home and things still didn't look right, but the best way to describe it was an afterimage of a bright light - like when someone takes a lot of pictures all at once.

Friday morning I woke up and while I was in the bathroom, I noticed that I couldn't see to my right.  I turn to my right to get tissue and my earplug.  Nope... all fuzzy.  I didn't even wash my hair - I was afraid that my retina was detaching because I felt no pain and I also had been seeing intermittent bright lights when I raised my hands over my head.  If I had any other job, I would have stayed home.  Fast forward a few more hours, the dark area got bigger and bigger, and now at least a quarter of my vision on the right is totally shot and distorted, while the rest just feels 'off.'  After a visit to the opthalmologist (who I couldn't get to understand the nature of my problem), we finally agreed that it was retrobulbar optic neuritis, related to my multiple sclerosis, and not my pregnancy.

This sucks.  This SUCKS.  If you were to draw a square, the entire left/bottom quarter is essentially missing.  In one eye alone, this isn't the worst thing in the world.  But when I look with both eyes together, this region is in the middle of my vision, and it's very distracting.  When things move in this area of my vision, it looks like static.  My eye is working okay, it's my brain that's all screwed up!

I can't do the usual steroid treatment because I am pregnant.  I feel so helpless.  Like, what should I do?  What will happen?  It seems to be getting darker.  I don't know if it's getting bigger.  I don't know how long it will take to get better.  Thank God I am left-eye dominant and look into people's ears on the opposite side.  This is just ... unfair and ridiculous.  I feel lied to, mislead, and angry.  I'm 20 weeks pregnant with a little girl, I have bigger fish to fry, immune system!  Why have you not calmed down yet??!!

Oy.
MSloan

Chat MS - 11/30/2015

This last Chat MS was all about MS research, a topic dear to my little science heart!  Please don't hesitate to copy/paste to your own blog to keep the conversation going!

Q1 – Do you keep up to date with latest #MultipleSclerosis news and research articles?

I do a bit - since I am in the loop for new hearing science developments, I occasionally come across good Multiple Sclerosis treatments.  I do of course read the ones that get distributed by the National MS Society.

Q2 – What is your “go to” place for the latest in #MultipleSclerosis information?

National MS Society and, believe it or not, Twitter.  Unlike Facebook, I have found the Twitter is a really great way to stay up to date on the latest research and developments with MS because I follow a fair amount of heavy hitters.  I recommend it to anyone looking for regular answers and a real community.

Q3 – It seems each week there may be a breakthrough or “game changer” when it comes to treatment. What has you excited the most?

Ah man, I see this all the time, but honestly I haven't seen a lot of stuff that excites me.  However, my dad hears things all the time and is really excited about them for me.  He learned about the bee sting study and got really hyped up and told me about it every time we talked on the phone for a month.  My dad doesn't talk to me on the phone.  So yeah, he thought it was a pretty big deal!

Q4 – Have you or would you ever enroll in a clinical trial to see how something new may affect your MS?

ABSO-FREAKING-LUTELY.  I have been a part of a research study on physical ability and MRI correlates at the University of Colorado at Boulder.  I enrolled just after my diagnosis.  It is SO important to participate in research, even if it isn't a clinical trial.

Q5 – In many cases we see articles claiming breakthroughs but never seem to hear anything else. Why do you think this is?

This is the sad reality of science.  Single studies are not enough to effect real change.  Some studies look great on the surface, but repeat studies do not find the same thing.  There has to be a repeatable response for it to be transferred into a real FDA-approved treatment.

Q6 – There are trials on-going for treatments that repair myelin. Would you be interested in this? Or is it “just another drug”?

I think this is excellent!  But right now - - I am a bit skeptical.  I fear that medication that can increase myelin would be hard pressed to be controlled enough not to over produce and cause an adverse effect, specifically causing other diseases like neurofibromatosis, which is essentially the evil opposition to MS.

Q7 - What is a cure to you? Stopped progression forever? or complete reversal of symptoms? 

Both of course!  Stopped progression is incredibly important to me.  More research on medications and the JC virus.  More research on effective medications that don't cause OTHER problems.

Q8 – Do you think we will see a #MultipleSclerosis cure in the next 10 years?

.... realistically?
No.  I am not trying to be a bad news bear, but even if there was a major breakthrough in the progressing of MS and how to halt it in its tracks, it would most likely be over 20 years before we see that get distributed out to the masses.  Because of the nature of MS, the relapsing part of the disease makes it all the more difficult to understand the effectiveness of things such as 'cures.'  There's very much a difficulty here in how to determine what is really causing the relapses to halt - is it because that person's disease is just relaxing?  Or is it because of the medication?  This is why MS is so hard to pinpoint.

Thanks for reading, all!  MSloan

Chat MS - 11/23/2015

This week's Chat MS was about social anxiety with MS - please feel free to copy/paste the questions to your own blog.

Remember to keep the conversation going and have a great Thanksgiving -

Q1 – MS can cause or add to social anxiety. Do you experience Social Anxiety since being diagnosed with MS?

 Absolutely.  I already have general anxiety disorder, and when I'm having a flare or especially after I was initially diagnosed, I had even more bouts of it.

Q2 – What contributes most to your social anxiety? (A certain symptom, using an assisting device, someone’s actions, etc.)

This biggest thing is that I have MS at all.  People don't understand it and I want to educate them, but at the same time I 'don't want to talk about it.'  This goes especially with my coworkers and bosses, because having MS makes me an ADA risk.  I have lost job opportunities after one of the potential employers found out I had MS and clearly didn't really understand what that meant.  I have not missed a day of work because of my MS in over 18 months.

I also struggle with telling people that I'm with about the possibility of my fatiguing quickly.  I have a relatively svelte figure, am tall and thin, and otherwise look healthy.  When I mention that I'm too tired to do something, I get a lot of eye rolls.  I look good on the outside, but on the inside, I'm struggling to stay alert.  This is really a hard thing to feel good about.

Q3 – On a scale of 1-10 (10 being the worst), how severe would you say your average anxiety bout is?

7 or 8.  I tip to 10 when I have to drive somewhere - but driving is my general anxiety trigger anyway.

Q4 – Are there situations or places you purposely avoid because of your anxiety?

Not necessarily, but I am known to be flaky because I'll feel good about doing something the day before, but when I wake up, I'm just not up for it.  This happens a lot.  It's the most common issue I struggle with when I'm not having an active flare up.  I remember being able to go all day on my feet, working full time in a job where I couldn't sit down, and get up and go the next day with no issue.  Pain free.  I miss those times.

Q5 – Have you discussed social anxiety with your neuro? What did they say?

Nah - it never really came up and I doubt he can do anything about it.  Unfortunately social anxiety is not like GAD and isn't really affected by medication.

Q6 – Do you ever worry or get anxious about things that have not happened and may never happen?  

Abso-freaking-lutely.  All the time.  I am afraid I'll wake up and not be able to move, my baby will be crying, and I won't be able to help.  I have this dream a lot, and it makes me think about it all day long.  I worry about my ability to get around.  I worry I will have a flare that affects my hands and I won't be able to work.  I worry I will be out with friends and will have to stop before they're ready to.

Q7 - What do you feel when you experience social anxiety?

I get quiet and I don't want to talk to anyone at all.  I'm not an easy crier but it makes me feel like I am about to flood the room.  My heart beats quickly and I feel like I might pass out - it's very close to a panic attack.

Q8 – What helps you overcome bouts of social anxiety and what tips would you have for others?

The best thing is to spend time with people who are willing to ask questions.  Tell people you don't feel well.  But I still really struggle with this because I don't like getting eyes rolled at me - because frankly, people don't believe me.

Love to all - MSloan