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: 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 

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

MS, Real Life, Real Support, Real Fear

Did I say I was done for the night?  I lied.  I have another thing on my mind that is really grinding me.

Today I had lunch with my coworkers.  We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things.  It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.

I feel like that's how my illness is treated.  It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away.  My illness doesn't have me, but I own it.  I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer.  I am proud to be a relatively healthy voice for MS.  I am not ashamed of it.  But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it.  Because at the end of the day, no one wants to talk about it.

I talk about my MS at church a lot, because I feel like it's a safe place.  I can't be denied a calling because of my MS.  Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?

In my job, however, that is not the case.  We know full well what might happen to someone with MS.  I am an "ADA Risk," and many people might consider me unemployable.  So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job.  I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis.  It is scary, unfair, and makes me worry for my future.

Today at lunch, I felt more lonely than I've felt in a long time.  I'm pregnant without a mother.  My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it.  My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about.  He can't say much about it anyway, so I guess it is almost preferable.

But at work, it's more of the same.  More questions that make me feel like they think I'm faking a mythical issue from long ago.  A quick inquiry here, another there, but silence the rest of the time.  They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that.  When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.

No questions.  No real emotion.  Just surface, because it makes everyone uncomfortable.  I didn't tell anyone that I was dying, that I had cancer, that I was incurable.  I told them I couldn't feel my feet and it had implications about my stress level.  Hiding how I'm feeling only increases that.  Makes me feel self-conscious.  It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.

What I'm trying to say is, more concisely - this is a condition of loneliness.  Outside of other people with MS, it's impossible to describe how you're feeling.  Impossible to get other people to understand.  I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.

I know no one gets it.  I just ... wish they would ask.
MSloan

Relapse?

Hey all.  Today has been an interesting day.

After making such a big, stinking deal of being happy that being pregnant reduces MS relapses, I seem to have forgotten the operative word:

REDUCES.

It doesn't eliminate relapses, and I woke up this morning with no feeling in my left toes, and none in my right big toe.  I don't know if this is my MS or if it's somehow related to my pregnancy, but I feel like an idiot!

More updates to come - Love all!

Chat MS: October 19th, 2015

Hello, readers!

I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST.  Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening.  So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments.  By talking about the issues, we can make progress!

Let's get started!  This week's theme was Women with MS.

Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?

I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease.  I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider.  Though despite the higher numbers of women with the disease, it seems to be much more severe in men.  No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.

Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?

I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well.  Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009.  I describe this time in my life as, 'when I got sick.'  I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.

Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?

I did not - and I was terrified that it might me I couldn't have children.  I am in a religious union with my husband, who comes from a large family and always wanted kids.  I was always on the fence.  But now, I had a choice to make.  I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course.  That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe.  We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug.  I am 13 weeks pregnant, and so far things are going well!

Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?

Can't take it back now :), but of course there are fears.  I am afraid I will not have the energy to keep up with my children.  I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness.  It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages.  I worry I could lose my sight.  I worry about my cognition.  But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass?  Shit happens.

Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?

Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues.  I can't sleep, and am very tired, but not "MS Tired."  I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous.  I have restless leg syndrome, but it doesn't feel like the weirdness of MS.  Time will tell, I guess.

Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?

Hell.  Yes.  I hate that some people really don't think there's a connection.  These are the same people who don't believe there is a connection between menstruation and migraines.  STUPID.  My first major flare happened in the middle of my period.  To this day, my biggest symptoms that hit around my period are severe fatigue and nausea.  Oh, the nausea.  No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010.  I was certain something was terribly wrong with me and no one listened.  Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs.  Which are poorly named.

Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?

Dude.  Chocolate.  And Excedrin.  I need the tylenol/aspirin/caffeine mix.  But other than that, it's a wait it out system, and I pray I don't have a flare.  I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.

Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?

Whoa there, nelly.  I'm only 27.  Let's take childbirth first, ok?

Alright, everyone!  Your turn!  Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)