Uncertainty

Well, not much to report.  No change.

I am fairly certain that I have an enterovesical fistula - which means there is a passageway between my bowel and my bladder.  This could explain all the weird urinary symptoms, with the absence of actual UTI.  I think it's a little bit odd that they did not find air during CT (which is the telltale sign of EVF) - but all my other symptoms seem to fit.

I'm doing an at-home experiment as a result, called the poppyseed test.  It's exactly what you think.  I eat a shit ton of poppyseeds (luckily I have a total addiction to almond poppyseed muffins) and watch to see if I pass any poppyseeds from my urethra over the next couple of days.

I am fortunate that actually passing small things from my urethra no longer causes me unbelievable pain - it's now only slightly uncomfortable for the most part.  I do occasionally have more pain, but it's few and far between.  Wish I could say that things were healing, but my urine keeps changing and getting darker.  I'm peeing blood again.  So today it's not really getting better, but how I feel is getting more tolerable.

Wish I could report that my MS was totally chill right now - I'm hating the fact that my leg spasticity seems to be on the rise.  Every morning when I stretch my right leg, it cramps up.  It's likely just a side effect of everything from the steroids (which keep me awake, give me heartburn, make my voice scratchy, yadda yadda).  Prednisone is seriously no fun.  Can't wait to be finally tapered off - only about seven more days!!

My life feels like I am at another set of crossroads.  It hasn't even been a year since I totally bailed from my first real job.  I loved that job, but there were so many things wrong with that location.  I just could not stay there any more, waiting for the ship to sink.  I felt guilty and terrible.  But it wasn't right.

Well, I feel like this just isn't right.  It can't be right.  I don't belong here!

There's gotta be something better than this
There's gotta be something better to do
And when I find me something better to do..
I'm gonna get up, I'm gonna get out, I'm gonna get up, get out, and do it!!

Love, MSloan 

ChatMS, 3/14/2016

Alright, peeps!  Time for another installment of post-hours ChatMS!

I missed the chat again - had to do laundry and my poor kitty is sick, not to mention dinner.  Spending a lot of "spoons" tonight.  Looks like this was a good one!  Don't forget to copy/paste the questions to your own blog!

Q1: Has your social life changed since being diagnosed? If so, in what ways?

Yes and no - there are some things that have been altered simply because I can't be as active as I would like to be.  However, I wouldn't say this has been true since I've 'been diagnosed,' so much as since I became symptomatic.  I have been reducing my overall activity and watching what I put into my body since early 2010, always wary of nausea and getting 'the shakes.'

Q2: Who do you tell you have MS? Close friends/family? Anyone and everyone?  

I didn't tell many people for two years.  I have recently 'come out' on my facebook page, but to be honest with you I don't think most of my friends really understand why I have been very vocal about MS awareness this month.  They don't understand it and they never will.  The first person I told I was concerned I had MS was my husband, about four months before I was diagnosed, and then I shared my concerns with one of my oldest friends two days before diagnosis.  Mixed reactions from everyone I told.  I now only share it with patients when they really need to not feel alone in their own invisible struggles - we're kind of a 'special club' that, from the outside, seems very exclusive.

Q3: How long after meeting someone do you tell them you have MS?

As a general rule, I don't tell people right away.  This is because of the negative stuff associated with telling anyone that you are chronically ill - they assume you're telling them to get attention, not to get them to better understand why you do things a certain way.  It's just not worth the hassle.  I suffered from "pregnancy brain" very early on in my pregnancy....but it wasn't pregnancy brain at all.  It was MS brain.  And it's not worth the fight to get people to actually care why you might be struggling.
I waited at least three months to tell my current coworkers.  I don't wait at church.  To me, church is off the table.  If you are going to judge me at church, you shouldn't be at church!

Q4: How do you tell people? When the time is right? Or it just comes out in conversation?

I do both - when the time is 'right,' and when it makes sense in the context of the conversation.  I don't just blab about it.  Again, seems like an attention getting thing - and you get negative attention for something like this, no positive.  People pity you, they don't want to understand you.  As I have said time and time again, it makes them uncomfortable, so it's not worth the hassle.  I have told patients who also have MS, patients who have Fibro, Lyme, or Lupus, and anyone who has 'invisible symptoms' and are struggling - I have another patient who I really have gotten close with, he has muscular dystrophy. 

Q5: Are there times you're ever hesitant to tell people you have MS?

Abso-freaking-lutely.  In a professional context, this is a HUGE no-no.  I don't want my colleagues in audiology to know about my MS because it can seriously impact my employability.  I'm an ADA risk.  Is it incredibly illegal, unfair, and terrible that I would worry about such a thing?  Yes.  But I still have seen discrimination - when I was first diagnosed, I was honest with a potential employer about my very real, very current struggle, because I had been advised not to fly.  They took my interview and I heard not another word.  It was very painful, but I learned a very hard and valuable lesson.  Hence why I waited 3 months to tell current coworkers - and I still don't think I'm safe here, because I know someone was let go for having Parkinson's just before I was hired.

It's shitty, and I hope this changes.

Q6: Did you meet your significant other before or after being diagnosed?

Long before.  We had just gotten married when I started having symptoms - it was the hardest year of our relationship, for a number of reasons.  My emotional state really set things off, I think; I was struggling with losing a very important friendship, with applying to graduate school, with my family being disappointed in my life choices.  It was a hard year.  And then... I got sick.

He's been fantastic, though when I first told him what I thought was going on, a few months prior to Dx, he was skeptical.  When it really got serious, he was convinced I had a brain tumor - MS was the milder of the two!

Q7: Do you think having MS decreases your chance of finding a life partner?

I can't comment on this because of my answer to Q6, but why the hell should it?!

Q8: Do people treat you differently after hearing about your disease?

Yup.
Negatively.  Awkwardly.  Skeptically.  And it really is painful and lonely to know that the people that you thought cared couldn't give half a shit to try and understand what you're experiencing.

Q9: Do you find that most people are understanding when you need to reschedule plans?

Eh.  I kinda have a reputation as a flake.

Q10: Does MS hold you back from living a full life?

Hell no!!  As I always say, "I have my MS, it does not have ME," and if I want to have a full life, that's my choice and it can't stop me!
I mean, it can really, really try, but I won't let that happen!

Love to all, I really liked this one!!  I look forward to seeing other responses :)
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 - 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

I just participated in my first Twitter #ChatMS - it was excellent!  I feel so much more connected to the blogosphere/intersphere of people who have MS across the country and around the world.  It's so great getting to know all of you as we share in this journey together.

I haven't had much reason to post lately because my MS is essentially on hiatus while I go through pregnancy - - SO why not post things about pregnancy?  WHY NOT, I SAY!

So the next post will be the progress on Squishy thus far.  Love to all! And thank you for participating, you make me brave!
Miss Sloan :)

twitter.com/revelwoman

Updating on the Times -

Funny how when things are going well, you are less likely to update on things like that.  But I think it is even more important than when reporting poor condition!

I have made a huge change in my life in the midst of being diagnosed with MS.  I have moved cross-county with my husband and three kitties.  I have started an anti-depressant and the MS medication, Gilenya.  My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now.  I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit.  We shall see how that pans out.

I'm giving an update on what it's like to get your scripts!  When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you.  If you're like me, you'll be lucky and have no copay.  This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it.  So heaven forbid you are ever not covered!  But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks.  Come on, people.

Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order.  This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things!  So there's that.  But it's doing it's job (I think) so I can't really complain!

I'm so happy I took the leap to an anti-depressant.  We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug.  I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with.  So if you're suffering, speak out!  And do something, even if you think your problem is mild.  If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!

Love to all!  And a good song I posted, hope you go listen.

https://soundcloud.com/margo_aries/trouble-cat-stevens-cover

The "Pull-Away" Game

Remember how I was struggling with whether or not I should tell people about my diagnosis?  I'm glad I didn't spread the word like wildfire or make a big deal about it publicly.  The reason?  The one place I really had no choice to, my job, has been a great little petri dish for how people actually respond in this situation.

At work, I felt like I had to share what was going on because of the nature of my job.  I work with an awful lot of people with varying neurological conditions, so it's hard to keep things secret when you know you've got a neuron problem.  My boss is incredibly sweet and caring, so there was no reason to keep things from her if I was concerned.  But also, because my coworker has MS and has been open about it, the topic is almost always 'on the table' in some way.  So when I came into work and mentioned offhand that I couldn't feel my leg, she immediately said, "I know what that's like, it sucks..." and I gave her a knowing look.  She could tell by looking at me that I suspected, but hadn't said anything.  But when my boss came in, she overheard what I had said, and of course pulled me aside with concern.  "You know what that could mean because it's affecting both your legs," I nodded, agreed, yes yes.  So when I went to the ER the next day, I didn't hesitate to tell her what they found.

As a result, everyone in my immediate office knew what was going on because they knew.  And not everyone in the office responded the same way.  There are only 5 people in my office besides me, one of them was out of town at the time of my first being sick, and the other two are very strong young women who have their own problems.  One of them in particular has never spoken to me about what I've been dealing with - which is fine, but a little odd to me.  You'd think you'd say something.  But it's obvious that the whole ordeal makes her uncomfortable.  I act fairly flippant, 'matter-of-fact' about it at work as a result, trying not to make anyone else uncomfortable because no one knows what to say.

I have found that some people respond well to the flippant attitude, because it makes for less awkward conversations when you're up front, 'no big deal,' 'it is what it is.'  Especially my doctors who say I'm handling things 'surprisingly well for my circumstance.'  But am I really?  Or am I just faking myself out of feeling really upset?

My coworker, one in particular, is pulling away.  I don't know if this is because I'm leaving or because of the illness, but it makes me feel like not going to work.

I think in this circumstance, I am happy to have depression.  Depression, in a word, tends to 'mute' things.  I don't describe my depression as a presence of sadness; it is more an absence of joy.  It's really an absence of all sorts of emotions.  When I was told I had MS, I didn't get upset - I asked what we did next.  Not what my ER doc had in mind (I know lots of people react this way, but it seems obvious not to him).  But I did the same thing recently when they told me things weren't looking better - and their response to mine was, 'wow, you look great for all that's going on.'  I have to thank my depression right now for keeping me grounded.  No, I'm not getting as fangirly as I used to over my major celebrity crush or a good day at work, but I am also not breaking down in tears every few minutes.  Thanks, depression!

I guess the point is, I understand why people pull away.  I know it makes people uncomfortable.  But seriously, really, it doesn't make anyone more uncomfortable more than me - I wish they could see past the flippant response and see that it's scary and not OK. 

An Open Letter to Unsolicited Advice

I know you're trying to make me feel better.  I think it's great if someone you know or someone you know knows someone else who tries XYZ to keep theirs at bay.  You're one of the few people IRL that knows about this problem, so of course you feel the need to downplay my 'type' and tell me that it 'isn't so bad.'

I finally feel validated that I'm not insane, and now you want to tell me it's 'not so bad'?

I'm not trying to be difficult, and I am not trying to feel special or more injured.  But I am not the people that you know, the people that you say cured their problem and you would never know it.  Of course you would never know it, this problem is invisible.  Have you asked them to tell you what they actually feel every day?  Did you not notice that I haven't volunteered information, or talked to you about it?

Did it occur to you that I'm not handling this very well?  Oy.  In my profession, we thrive on counseling and communication.  So I feel trapped in a box to have this sense that I can't talk about this problem because so many people think I'm bullshitting.  I'm not bullshitting.  Who the hell would make this up?  What kind of a sick person do you have to be to pretend to have a degenerative illness?

I don't want to talk about it like that, I don't want to doom my psyche with negative thinking.  But sometimes negative thinking is the reality, too, isn't it?  Sometimes we have to consider the worst to move on for the best.  And sometimes we have to face the facts that our baselines are not 'normal,' that sometimes exertion of any kind on the body is interpreted by the brain as 'stress,' and it makes things worse instead of better.  If I could run my tingling into the ground, I would.  But I'll be honest with you, physical exertion right now makes me feel funny.  It isn't enjoyable.  And I mean all kinds of physical exertion, which is terrifying, and upsetting.  How do you think my husband feels?

I don't want to hear any more about how someone you know keeps hers away by watching what she eats and exercising.  I don't know why this infuriates me so much, but it does.  It tells me that you think I'm not doing enough and if I change something, I'll feel better and everything will be okay.  But I'm up against the biggest change I have ever made in my entire life, and this is not counting this frick of an illness right now, and I'm scared.  I'm scared about all the regular things going on beyond if I'll feel well enough to get up and go in the morning.  Because it is THAT unpredictable.  I could wake up, go to work, and feel shaky and nauseated all day for no reason.  You think I didn't try going to the gym?  You think I didn't try eating differently?  You think I didn't do everything I possibly knew how to do to make that go away?  What an ignorant idea, that I'm as smart as I am, but too stupid to take care of myself.

Do you have any idea what it's like to feel like you can't sit through your workday, and be terrified?  Have you ever had to explain to a patient that your hand is shaking because the instrument you're holding is heavy, when you've never had that problem before?  I'm glad I'm not a damned surgeon, for crying out loud!  Stop making assumptions about my lifestyle and how this so-and-so is doing a better job!

Deep down, I know you say these things because you need to feel less worried on my behalf.  That's great, thank you, I appreciate that.  But understand that right now, I just need to feel cared about, not downplayed.  The light at the end of the tunnel for school looks bleak and hard to reach right now.  And telling me that I'm not doing a good enough job of keeping my body running - - it just makes me feel bad about myself.  I already feel bad enough about myself on a regular basis.  I do not need someone to remind me that if I took better care of myself (and, btw, I do the best I can for the circumstance) that this wouldn't be happening to me.

....
The truth of the matter is, I don't think about it all the time.  I write this blog in the weak spots.  I feel a need to get my thoughts out so they're not trapped in my head, so I don't rant on my FB page, so I don't scream it out loud.  I am frustrated and scared at what lies ahead - but I don't have time to be worried about the status of my neurons.  I have had this problem for several years now, kept it 'at bay' for some time, until a month ago when my whole body went on hiatus.  Living with the symptoms?  Eh - it is 'not so bad.'  It is scary and horrible and uncomfortable, but it's livable.  I often didn't tell anyone that I didn't feel good - after years of people telling you it was nothing, why bother with new people?  I am sure that when I start this drug, some things will change.  Maybe it will make me feel normal again.  Maybe I will be able to get back to the painting I worked so hard to cultivate this year.

My word for 2014 is 'joy.'  I am not going to let a self-destruct button take that away from me!
Rant over, thanks for listening.

Margo

Making Decisions

I decided to go with Gilenya.  I called my doctor to let them know so they might get the paperwork going; we set an appointment two weeks out - for this drug, I have to go in for an entire day to be monitored because of the potential heart issues.  It's the day after my birthday, FAN-TAS-TIC.

Right now, I'm struggling with the decision of telling people about my diagnosis.  You know how the internet is, well, a semblance of anonymity?  I have always been a very active person with social media, and I probably have way too many accounts to keep track of.  So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter.  I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.

In real life, however, having a chronic illness can be very different and difficult to share.  You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'.  What is NKOPA?  The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions.  As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use.  My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.

The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all.  If I could have kept my legs from going numb by eating more grapes, I would have.  I would have drowned myself in grapes (and I don't even drink, haha!)  But that is not reality.  Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.

By the way, do you want to know how to tell if someone is Vegan?  Don't worry.  They'll tell you.

So today I am asking for some responses.  Did you tell people in your immediate circles when you got your diagnosis?  Did you tell anyone at all?  How did the people in your life respond?  I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead).  I would love to hear some real-life experiences of what you went through when you were first diagnosed.

Thanks all,  Margo