Finally.... A Plan!

I finally got through to my neurologist!

We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options.  He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time.  I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.

Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no.  It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further.  While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:

His name is Dufresne, and I painted him on Sunday.  So I haven't completely lost my ability to make good art, and that's comforting.  It definitely wasn't the same, and painting on the black background certainly made it easier.  I'll have to re-teach myself to paint on light.  Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it.  I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours.  I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!

Well, here's hoping that I won't have any active lesions when we take a look in April/May.  Fingers crossed!
Love, 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

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

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!

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

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

Baby Blanket

I started a baby blanket last night!  Well, I attempted to, until I was hit with a wave of fatigue so hard I thought I was going to pass out, while sitting down!  I had just enough energy to take my prenatal and crawl into bed.

Where I proceeded to lie awake for several hours.  AUGH!  I can't be alone in this.  I feel like a Nirvana lyric.

I did, however, 'wake up' this morning and went for a walk to the local donut shop.  Cake donut with sprinkles - mm!  I am still not gaining anywhere near enough weight for my pregnancy, in fact I am losing weight, so I'm trying to remember to eat during the day.  I have never been successful at putting on weight when I want to.  Stop bitching - I'm tall and have skinny genes, so this has always been more of a 'bean pole' struggle than you might think.

My baby blanket is a light teal, gray, and yellow, as we don't know the sex of the baby yet and I like the colors - it will go well with our Pooh themed nursery!  I like my glider, I especially like that while I'm crocheting I am not able to focus on the numbness in my feet.  It seems to be the worst at night, gets better at about 11 AM, and then fluctuates for the rest of the day until about 9 PM when it gets really bad again.  Thus far, it has not creeped up my legs much, and I'm taking that as a good sign!

Neurologist decided not to do an MRI due to 'unknown risk to the fetus,' I was under the impression that an MRI was safe during pregnancy but I will defer to his judgment unless something really gets worse.

Enough for now, back to crocheting and watching "Moonrise Kingdom."  I love Wes Anderson movies, don't you?  Over and out -

MSloan

New Hope

No, not Star Wars.  MY new hope!

I mistook my MRI date for the 24th, today, when it was the 29th.  I don't know how I messed that up (pregnancy or MS brain, probably) and so I didn't have that done this morning.  I rescheduled it for later this week at the butt crack of dawn; at least by doing that I will get it done.

My doppler finally arrived, so I was able to bug my baby and hear the heartbeat!  So exciting.  The great little 'whoosh whoosh' sound is so uplifting and makes me feel much better.  Puts everything into perspective.

Went out with the hubby and got some baby stuff today; we officially have a crib, a baby swing, and tomorrow I will be going back to get the matching stroller - it wouldn't all fit in my car, but now I have a coupon if I get it tomorrow anyway.  So, all good things.

On that note - I have to make a special shout-out to pregnancy pants.  They are the most comfortable things ever, and I will most likely never go back to regular pants again.  Why would I now that I KNOW the secret? :)

Love to all today, I am making chili for a cookoff this evening.  Hopefully I won't burn anyone out; these Californian's don't know spice...
MSloan

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 :)

#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

A Changing World

Hello again, all.  I hope this finds you all well!

In a blog like this, one that follows my medical progress, I don't find it necessary to continuously post when nothing exciting is happening.  But, since I do have so much experience with the medical aspect of the disease, I should contribute when I can.

I recently had a string of blood tests done to check in on my overall health.  Knock on wood, unlike a few months ago, I do not have constant stomach pain which might just mean the "MS hug hell" that I was experiencing daily might be finally subsiding.  I know a surgeon just couldn't WAIT to rip out my gall bladder for being a few points below par, but as there were no gallstones, I didn't understand why he would want to remove it.  He said there is no cure or treatment for the problem that he found - but if that really were true, why did a small diet change make such a big difference?

Hmm, my brain tells me, hmm indeed!

The blood tests showed that my cholesterol was absolutely through the ROOF and my iron was through the FLOOR.  Aye-yay-yay.  Tons of fun.  I believe that my cholesterol shot up with my anti-depressant; my doctor told me that hyperlipidemia only occurs in about 1% of people - I wanted to tell her, "Come on, lady, I have a disease only 2.5 million people worldwide have, and you think I'm concerned about your measly statistical 1%?  Clearly with my activity level, body type, genetics and diet I should not have a cholesterol reading of 244!"

The point I'm making is: I wish my doctors were worried about my symptoms like I was.  When Kaiser kicks back a test result to my email address and I check it, and it clearly is shown as an abnormal finding, why don't you address that with me?  Why not tell me why you are NOT concerned about it, for the love of Pete?  I don't know if my doctor knows that I can see all those results before she does, but it makes me crazy.

As a medical provider, I do whatever I can to relieve my patient's concerns by expressing to them everything I am looking at and why, so if I find something abnormal, I can tell them why it might be worth looking out for or worth ignoring.  I am a firm believer that people are in charge of their OWN health care - and therefore have to be informed enough to know what's going on where.  I met someone recently who has had symptoms of chronic Lyme Disease for almost 20 years (and yes, it does exist, morons out there who think it doesn't) and never understood why everything sounded crazy loud all of a sudden.  No one even bothered trying to explain what the disease might do to her over time and why.

I mean, I know I can call my neurologist for answers if I really get scared, but doctors are not omnipotent.  Really, they aren't.  Every doctor is different.  You know what they call the last guy in the class in graduate school?  Doctor.  Idiots can get through credentialing, too.  I feel like I shouldn't have to pull teeth to get answers and comfort.  My PA at the neurologist's office as well as the head nurse gave me so much more than the doctor ever did - it's ludicrous how hard it can be to understand our own conditions.

The truth is, the future of MS scares the pants off me.  I don't know what to expect when I wake up in the morning.  Am I going to be dizzy today?  Am I going to be able to taste?  Will I be able to feel all my appendages, or will the third toe on my left foot be numb again today?  Hard to say, because it changes all the time.

I know that it is as likely as not that I will never have a major flare again.  It's a great dream.  But I also know that my luck is just not that good when it comes to my health (bummer!) and I often learn things through my own health experiences that allow me to understand and be a more empathetic person in general.  It is my own form of service.

With that in mind, I am going to post a great video about service - and a woman who has had MS for some time and how she relies on those around her to do the simple task of getting her in bed every night.

https://www.lds.org/media-library/video/2015-05-003-lift?lang=eng

Love to all -

Hits the Fan

Congrats, you are 1 year without another major flare!

You win:  One Institutionalized Mother!

361 Days of MS

Hello all!  It's been a while!

I apologize for not giving frequent updates - but that is a GOOD thing.  It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?

Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure.  Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains.  I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting.  Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please!  As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?

It has been almost a year since my MS really 'began.'  I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb.  It no longer was an ignorable problem.  After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.

I no longer have constant numbness in my left leg.  I can work out now without any tinglies as well.  For the most part, I feel back to 'normal'!  It's a great improvement.  But I am aware that things aren't perfect.  My left toes occasionally go numb and tingle.  My forearms have the most numbness, though it never lasts an entire day.  Sometimes it is there, sometimes it is not.  The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.

My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time.  My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy.  To go off the medication at this point puts me at a number of risks that we have to weigh.  I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever.  Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.

In the meantime, since about September of this past year, my family has gone through a huge change.  My father was accused of murder early in 2014.  My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her.  I consistently tell the joke that everyone loves my father but my mother - but that really is true.  Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed.  I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood.  I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.

So how is everyone else doing?  Have any of you had any new symptoms, treatments, or issues you need to get off your chest?  I'm all ears (or eyes, as it were).  Love to all!

Relocated

Hello all!  I know it has been a while since I posted, but that is a good thing for sure.

The last time I wrote, I was doing some art therapy.  I completed some more of the commissions my friend wanted from the Marvel character series - I will post those eventually.  But right now, I'm just excited to feel well enough to create again.

I made the big move, and am now in California, very far away from the place I called 'home' my whole life.  I spent many hours in the DMV getting my license and car registered in this state; next is my professional licensure, but they want to make absolutely sure that the process takes as long as possible, so I am not holding my breath.

On the MS front, I have been on Gilenya for over a month now.  So far I have not noticed many nasty side effects, except that boo-boos do not heal like they used to.  If I get a scratch, a zit, or heaven forbid a gross sore anywhere else, it doesn't go away quietly.  I also think my anti-depressant is working; last week I would have normally been biting my husband's head off with PMS, but I didn't have any real mood swings at all.  Which is AWESOME.

I started work this week, and I am so happy that I ended up where I did.  Of course, the process is just starting, so most of my current schedule involves training and very, very boring reading - but I know that it is good for me in the long run, and I am so excited to just be working again.  I am beyond lucky to have chosen a career that allows me to do things that I love, both at work and at home.

So, there you go, world.  Right now, that's where the MS train lies.  I have not yet found a new neurologist out here, I have not yet figured out how my body reacts to the Gilenya, and I have the trouble of feeling like I'm keeping a secret from my coworkers because all of this is so recent.  But I will prevail - and so will you!  :)

Results of Art Therapy, 5/18/14

This is the effort I put forth this evening since my last post.  Nothing compared to my lion, but he'll have to do.  Meet my "Shere."

Love all,
Sloan

Star Wars

Today, I got a call from my neurologist.  Turns out, they were able to get my brain MRI results despite my insurance not covering the cost - I suppose I will get a big bill for that later, but I'm glad that they saw them, as it turns out my last round of steroids was, yet again, unsuccessful.

My MRI shows that my lesions are not necessarily getting bigger, but now there are new ones.  This is not a good sign.  Though it is somewhat amusing to consider that my body's inflammation 'laughs in the face of steroids,' muahaha!

I have done a little research on the drug they are going to put me on next.  Let's learn about it together!

1) What is it?

The name of this drug is 'Acthar,' which reminded me an awful lot of Star Wars, hence the comic at the end of this post.  I hope you find it mildly amusing :)

Acthar is called an Adrenocorticotropic hormone, or ACTH.  It is meant specifically for acute exacerbations of MS (though I don't know if I could call this an acute exacerbation if I've had this for three months and it just isn't getting better.  I don't feel good about that, but let's move on!)

2) What makes Acthar different from the steroid injection treatment?

Acthar is not a steriod, but it acts something like one.  It forces the body's adrenal gland to go on hyperdrive and produce a hormone called 'Cortisol.'  You might recognize that as a word you hear in diet pill commercials as the 'stress hormone,' which increases body fat in certain places and in general just causes all sorts of problems.  Well, Acthar wants to use those crappy side effects of Cortisol to treat your MS!  It basically tells your immune system and inflammatory response to STFU.  It is essentially a natural steroid.  It can increase body fat, increase fluid retention, decrease your body's ability to process glucose, increase your likelihood of stomach ulcer - lots of problems.

Acthar is also not an intravenous drug, meaning it is actually given in the muscle, like you would a flu shot.  It shouldn't be taken intravenously because it can spread through your system at too fast a rate; this is why heroine addicts prefer a direct vein to shooting themselves in the leg.  You have to give this drug to yourself in a syringe for a number of days when you receive it.  I will not be doing that, I will be checking into my neurology office every day for 5 days until this is over.  I have put on a brave face this whole time, but I really do not like needles, and I don't know if Steve has the strength to do this for me right now.  I haven't told him yet.

It will be a fun ride for sure.

3) Why do you need this drug?

You need this drug if you have 'failed' steroids, which means you are still having an exacerbation and inflammation after being treated.  I have failed steroids twice now, and have new lesions, which means somebody, somewhere, needs to tell my inflammatory system to STFU.  That is where Acthar comes in.

My insurance company should cover this now that it is a justified use of the drug, you have to fail it twice for the company to give it to you as these little vials cost about $50,000 (that is straight out of the horse's mouth, the neurologist, when telling me about this a few weeks ago as the next option). 

4) Okay, so it should halt the progression.  What are the downsides?

It can cause wicked bad mood swings.  There's a huge paragraph warning about this; I already suffer from mood swings with my depression, so I'm sure I'll be way pleasant in the next couple of weeks.  General body swelling is another side effect.  This is the sort of drug that you absolutely cannot accidentally become pregnant while on, too.

I'm going to go grab my laundry now, as my life cannot stop though my brain clearly wants me to take a break!  I hope this helps someone out there get a better idea of what is up ahead.  I will continue to update as a know more.  Thanks for listening.

Let's hope Admiral Ackbar isn't right this time...

Muted

Depression is not a presence of sadness.  Rather, it is more an absence of joy.

I am steeped in quite a pit of depression right now.  It is somewhat seasonal, and I can't say I'm surprised, but it is coming at a very bad time.

I had another MRI about a week ago, and the insurance didn't cover the brain, only the cervical/thoracic spine.  Those are apparently clear, but then it doesn't explain why I get the shocks when I move my neck forward.  And does this mean that my neurologist can't get a report on the brain, even though they took the images?  How does that make sense?  If I had to sit in the MRI machine for 2 hours and have a bruise on my arm as a result of a botched infusion of the gadolinium, don't I deserve to know what the heck is going on in my brain?

I'm supposed to start Gilenya next week.  I was supposed to start it today, but didn't find out until the end of last week that I needed to have a lot of pre-tests done before.  Called by the neurology MA - 'You will be hearing from this nurse to get them scheduled.'  'Okay, thanks, I will get them set up.'  Wait a few days, hear nothing.  Call back about the eye test - still no word.  EKG and blood test?  Still nothing.  Call the neurology MA again, feel like I get in trouble for not having it done.  But you told me they would call me?  Okay, I'll find a place to do it.  Okay, we'll move the start date a week out.  You know I'm supposed to move here right?  Okay, I'll wait to hear from them.  What's that?  That eye place doesn't want to do that test, they need to refer me out again?  Okay, I'll wait.  Oh, now you say I have to set up the other tests.  Fantastic.  I'll do that - oh, wait, no, on the day those are set up the nurse finally calls to get them scheduled at a different place so I don't have to pay for it.  Well, seeing as I'm broke and now have bills to pay, sure I'll take you up on that.  Haven't you done this before?  How am I supposed to know how this works?  Okay, I'll do that then.  Eye test today.

Did I mention I'm graduating tomorrow?

I am so unbelievably stressed out.  I feel like I'm having another exacerbation in the middle of all this.  I am having the MS hugs so frequently that I don't want to eat, which makes it worse.  I'm not feeling as tingly, which is good, but that changes by the hour.  I feel like crying all the time, and finally started now that I'm not at work.  I finished my internship yesterday, and now I have to jump right in to finding a place to live on the other end for my new job.  The new job!  It starts in a month.  I am not ready.  I need a break.  I have no time for a break, now I have to pack to move.  I have no energy.

This feels like a spiral.  I can't get a hold of anything.  There are so many things I want to get done, I need to get done, in the time before we move - and I just can't find the time to do it.  Now my husband keeps asking if I'll fly out to California to find a place to live soon - when am I going to do that?  Why do I have to do that by myself?  Oh yeah, because I'm broke.  Because there's no good way to end up in this situation, but this particularly sucks.  I have no one, I feel so alone, I feel like there are so many people in my husband's life who are not uncomfortable asking him how he's feeling but no one wants to find out how I'm handling it.  So, as a result, the few times I do get asked I end up lying - "I'm doing okay, it's stressful but I'll get through it."  "I think if God wants me to learn something, I better learn it fast, haha!"  "It won't help me get better to sit and feel sorry for myself about it.  Yeah, good for me.  I'm doing well."

Well, here's a confession for you, bloggies.  I'm not handling this very well.  I am depressed beyond belief and cannot bear to think about another poke and prod in the next few days.  I put on a brave face for all these medical tests, but I HATE needles.  I have been doing really well with all of it, gritting my teeth.  But I don't want to be put on a drug that will force me to inject myself every day.  I can't fathom having to do that, but that's where I'll be, since Gilenya is basically just a band-aid until my next neurologist puts me on something stronger.  This is terrifying, I feel weak and unprepared for life.  I spent so much money and time being told that I was destined for great things, and now I feel like giving it all up.  I feel like running away.  HA - running.  I made a running joke.  Get it?  Because now that I have had this last exacerbation, I can't feel my feet anymore at baseline.  Makes running really difficult.  HA HA HA HA HA.

This bloody sucks.  I graduate tomorrow and I don't even care.  I want my family to celebrate without me.  Why do I need to be there again?  My wedding was a cheap bust of a party, so I have been 'planning' a grand graduation celebration ever since.  The MS diagnosis really screwed that up, because now we don't have the money, the friends, the space, etc.  We are going to have a backyard barbecue at my mom's house, decided yesterday.  She is upset that my dad will be there.  It's a family event.  My husband is graduating too, so his giant clan of a family will be there.  They all have small children.  My mom has dogs.  It's turning into a mess really fast.  I don't want to go.  I want to run away, I want to see the new Hiddleston movie again, I want to pretend that someday a good looking British man will look at me and tell me that I'm pretty.  I don't want to feel like the ugly reflection I'm seeing lately, with dark blue-circle eyes from no sleep and poor diet.  I can't afford to eat better, I've had my last paycheck.  I feel like an observer in my own life right now, unable to tap in.  Why can't I tap in?

Thanks for listening, bloggies.  Until next time.

How I Feel Today.

Please give a listen, love and thank you.
I need to get back into the music...

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

Picking Poison Again

Well, saw the neurologist on Friday.  Or, the PA rather, who is very nice.  Though it seems to be a running theme that people either never meet their doctor, or their doctor doesn't care - this is very frustrating.

I felt like they forgot why I was there.  The whole point of the last three weeks was because I had failed the first round of Solu-medrol, and had to be put on another dosage of steroids for over a week.  Then, we were going to re-do the MRIs, and start Tysabri.  When my JC virus antibodies came back positive (which they were weird about telling me, like I had HIV, which it is my understanding that the JC virus is common) - they had to scrap Tysabri, which was saddening as there is nothing as 'aggressive' at preventing relapses as that drug.

So we are back to the drawing board.

The doc wants me to get on medication ASAP, because the type of symptoms and lesions I have show that my disease is progressing quickly.  Not enough to reclassify me as anything other than R/R, but enough of a concern that we can't just wait to get me treated.  This really upsets me that I feel like I don't understand enough about my own disease to figure it out, and they can't or won't communicate that with me.  It is disturbing to me that when I move my neck forward I have tingles, noticeably worse tingles, running down the back of my legs for as long as I hold the position.  I have a stiff neck, but never had that before the last round of steroids.

This tells me that the likelihood of my failing the second round of steroids?  Might be pretty high.  I feel like crap, my numbness keeps changing in my feet - yesterday I could have walked on hot coals (or worse, loose legos!) and wouldn't have known it.  I don't have any set lesions in my cervical region, at least not on the last MRI, so why I have this problem when my neck is moved is just scary.

They are going to start me on Gilenya for the time being because I'm about to move out of state.  I just love getting guilt tripped by my doctor about how much of a pain in the ass it is because they can't get me started on daily injections if I'm about to move.  Gee, I'm sorry that where I got a job is a pain in the ass FOR YOU.  Here, let's switch places, I'll be the doctor that never meets her patients, and you'll be the broke brand-new AuD with NO MONEY, gross medical bills, and a condition that causes you to not feel your feet and numbs your hands - and you're supposed to move.

Again, sorry that this sucks for you.  But I'm the one with no place to live when I move, no money until I get paid 2 months from now, and a disease that is heavily affected by stress.  ::sarcastic thumbs up::

I ran into a very old friend who I haven't seen since my wedding five years ago - and I am so happy that she is someone I can trust and talk to.  She is getting her PhD at UNC (Carolina) and works in an Immunology lab, after transferring out of an MS lab.  I told her what was going on - she treated it like I do, very scientifically, and went off about a study she once looked at for T-cell receptors and myelin.  I'm so happy that she didn't give me the ridiculous pity look.  If I had seen her more often, I might have broken down in tears over the day's events and being chastised by my doctor for moving - but it's enough to know she knows if I need someone.

That's it for now.  Have to be on the 'weak' drug because it's better than nothing - the PA looked almost panicked that I still wasn't being directly treated.  Will have to hope my insurance will accept another round of MRIs.  And I'm not bringing mom to another appointment - I just can't right now.  Love to all. 

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.