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. 

Qualifications

Well, my JC virus antibodies came back positive, which means I can't be put on Tysabri.

Oy, one big, fat, OY!!!

I am going to see my neurologist tomorrow and discuss some other options, though I don't know what will be suggested if Gilenya wasn't 'aggressive enough.'

Any thoughts?  Sorry for the short post, I will have more details tomorrow.
Love 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. 

Short Circuit

The unknown is the scariest part of this process.  When things start feeling better, sometimes they are not, as I learned recently; I thought my flare up was over, and I was finally healing and at a reasonable baseline, only to find out my lesions were continuing to spread.  Yeah, there's the big one, but there's another one as well, and now one in my cervical spine that gives me bad tingles when my neck is arched forward.

Today the sensation is just... well, numbing.  An absolutely constant tingle in the legs that is distracting.  It feels like they are being rushed of blood, which makes you not want to stand or walk - psychologically, it can make you feel disabled even though your motor skills are exactly the same.  Like a short circuit in someone electronic, there's power going to the components, but they just aren't working properly.

It doesn't help that the oral steroid I'm taking absolutely tanks my blood pressure.  I have to maneuver a fair amount at my job, and after standing up after looking in someone's ears this morning, all I could see was stars. Now, since I've been dealing with trouble symptoms like dizziness, nausea, seeing stars, lightheadedness, and general malaise for the last four years, I have become a master of feigning being okay while chatting up a person - and then suddenly coming up with a legitimate excuse to leave the room for a moment.  But nevertheless, it is embarrassing, and it didn't put my day off at a good start.  Yesterday I had pretty hard chest pain in the middle of an appointment and had to just keep talking through it, and then later today someone wanted essentially the entire mechanism of hearing explained before their test - usually I absolutely LOVE that part, but today I was worried about passing out.  Just a bummer in general.

With the new issue of leaning my head forward causing more tinglies, it makes me apprehensive to say I'm doing better.  I have to put faith in these steroids, but at the same time, I am not so sure.  If I feel better without the drugs even if my MRI shows I'm 'getting worse,' which is the lesser of two evils?

I wish I got the medical bill in the mail already.  All this waiting is driving me nuts.  I know I can't afford it, but I would rather know just how much I can't afford, know what I mean?

Lhermitte's Sign

Cool!  Being a scientist can make some of the more interesting parts of MS exciting, despite how disconcerting it can feel.

Today, I had my first experience with Lhermitte's sign, a shock-like sensation from the back of the neck through the extremities, brought on by a particular flex of the neck.  I had honestly been keeping my eyes out, or senses out rather, since I first read about it after my diagnosis.  I wasn't sure I would ever feel it, as many MS patients never do.  So it was surprising today to say the least!

I was at the infusion center for my last dose of Solumedrol.  The tapering drugs they gave me for this upcoming week are like a bad math problem, but at least they are packaged in such a way that is easy to understand for the most part.  But that's irrelevant to this post, back to the sign!

I was leaning forward to grab something on my iPad while at the infusion center, when I noticed that my legs became much more numb when I leaned my neck in.  Just bending forward didn't do it, it had to be both the back and the neck, like tucking my chin to my chest.  It isn't painful, at least not what I've got not, just strange to manipulate the dizziness I was feeling by moving my neck.  When I stand, if I tuck my neck downward, I feel nothing - I can only make it happen while I'm already sitting down.  I don't know what my last MRI report said, but this is usually indicative of a lesion in the cervical spinal region.  SO I must have one of those too, seeing as the nerves freak out when I move my neck - but still interesting nonetheless.

Have you ever had an interesting experience with a 'typical' ms symptom?  Did you know what it was the first time you felt it? 
- Margo

Infusions: Fun for the Whole Family!

Today I started the second round of Solumedrol, an intravenous steroid that I will have again tomorrow and Sunday.

Unfamiliar with Solumedrol, or infusions, or the process?  Well, let me educate you on some of the things I wish I knew.

An infusion center is a place, usually a little room in the basement of a hospital or clinic, that's express purpose is to deliver intravenous drugs to patients.  They have to be open 7 days a week, because some drugs are time sensitive, and you can't just hope that the half-life of your drug will last through your weekend and workday.  However, as nice as this sounds, an infusion center may be very far away from somewhere that is convenient.  And don't forget that infusions often make you feel like hell afterwards, so organize transportation if you need it.  They look like they do in medical tv shows - lots of chairs, relatively comfortable chairs even, in a little room surrounded with IV stands.  It's meant to look more cozy than menacing, which makes sense when you consider that people who come in for chronic infusions (even you as an MS patient, or your friend the cancer patient, or your grandfather receiving blood transfusions for his low red blood cell count) need the place to look like a second home to keep from hating their circumstance.

The people who work in infusion centers are some of the nicest people in medicine you will meet.  Now, I'm an audiologist, and I think we're high on that list as well, so it's saying something if I mention that the infusion nurses are very conversational and sympathetic.  They need a pick me up, so the better your attitude, the better your experience.  They people see dying patients every day, and often have to put people in pain to get central line (chest/abdominal IVs) medications directly to the system.  The more patient and forgiving you are, the nicer they will be.

If you're lucky, you'll get a nurse that will put a warm, damp rag on your arm to get your veins to stick out.  I'm a very skinny person, so my veins are just as small, and the poking process for the IV is less than pleasant.  But communicate with your nurse - they'll understand if you tell them that spot hurts a little, or doesn't feel right.

Solumedrol comes in a little baggie, usually a full gram of the medicine (which is apparently a lot, I don't know enough now to disagree).  It is given through the IV over the period of an hour to an hour and a half; the time given depends on your nurse and what you tell them.  The drug can give you a headache, especially those first few times you get it, so the longer the infusion is the less likely you'll suffer from the foggy pain of the "Solly Headache," as I have so coined.

The drug has some interesting immediate side effects.  Solumedrol makes your mouth taste like metal, almost immediately once it gets high into the bloodstream.  Bring hard candy with you to make it less weird; it's odd because unlike actually tasting something that is metallic, when you swallow, nothing changes - it doesn't run down your throat, it just tastes funny, gross, icky.  Cinnamon candies are my favorite.  Drink water.  Lots of water, and eat beforehand, because everything will have that weird tinge afterwards.

And afterwards, you may become ravenously hungry.  Absolutely crazy hungry.  And everything will still taste funny, but you'll be hungry.  But, surprise, this drug can and likely will upset your stomach - heartburn central!  I already have GERD and suffered from bad heartburn for days last week, so right now, everything hurts to eat regardless of the antacids - but maybe you'll be lucky!

Solumedrol makes falling asleep really difficult.  So be prepared to buy a sleep aid.  And for me, this drug makes me feel more fatigued than anything in my life.  It puts me in a fog of sorts, a delayed reaction, one that makes me a little bit dizzy and a little bit disoriented.

Well, that's my run down.  Have you had Solumedrol and want to add your experience?  Leave a comment, the new patient readers appreciate it.
- Margo

Just Keep Swimming

Okay, today I am trying to have a better attitude.

Let's face it, the last few weeks have been one big, bad, crapfest.  We're trying to see the light at the end of the tunnel, but right now we wouldn't be surprised if that light ended up being a train headed straight in our direction.  I keep having to move things around for work to get these treatments in, and we're just beginning this second round of steroids.

So, where do we go from here?

Well, you have choices.  You can choose to let your MS take over, and resign yourself to your symptoms and experience.  But I feel like I can't do that right now, because as interesting as it is to have a huge white spot show up on my MRI (see picture on blog web page at right), I am not having 'worsened symptoms' right now.  So I don't have that option.  I could also choose to let this scare me into not taking my California job, letting it interfere with my future, and let the fear disable me.

But I refuse to be disabled by my MS.  Until it takes my legs, I will NOT be disabled!  I choose to not let this take over me just yet.  I choose to have control.  I choose to move forward!

So, this means, I choose to make a list of things to do while at my infusion appointments.  I choose to keep looking for an apartment in California, and I choose to make plans to go out and make a decision.  I choose to not be afraid of the next two months, and I choose to have faith that I will be able to get financial help for all of the floodgates that are about to open on my little family.

Today I forced myself to make a choice to think positively.  I may feel differently on Monday after three days of Solumedrol.  But today, I will conquer!
- Margo

Merit Badge for Demyelination

Oy.  Okay, so today has been one of those really rough days.

I got my contrast/non-contrast MRI update on Friday, and of course had to spend the 90 minutes stock still in the machine.  Which, if you've never had to do that, feels like torture after about 80 minutes.  It's not so difficult to fall asleep about 10-15 minutes in, but it's the last 10 minutes that you're screaming in your head, "Get me out of here!"

So I was hoping that the MRI experience would be over for this year.  WRONG.

Today, I was supposed to go in to start Gilenya.  I had a difficult time reaching my neurologist over the last few days because there must be a problem with their phone system; I didn't even get a reminder call about when I needed to show up and start the process.  So I decided to go in way early just in case.  I was, to be fair, fuming a bit because the only thing I had heard from them this week was an ominous phone call on Monday night: "Please give me a call back as soon as possible, thank you," nothing else.  So who else wouldn't be freaked out?

When I went in, I basically got my hand slapped for not signing a piece of paper I didn't know I needed.  But then the MA started telling me that my doctor was concerned with my latest MRI, and didn't think I should do Gilenya, and that I needed to do something 'more aggressive.'  I didn't know what this meant - but then she continued, saying that my lesions have gotten significantly bigger since the previous MRI, meaning that I failed the first round of Solumedrol after my ER visit.

WHOA, hold the phone, I failed?  Let's recap.  I went to the ER, feeling ok but numb from the waist down on the left side and foot on the right.  After a battery, got diagnosed, then treated with a 5 day course of Solumedrol.  It did nothing for my numbness, just made me feel like crap - and it turns out it did virtually nothing anyway.  The 9mm lesion in my left temporal lobe is now 3.3cm.  Centimeters!!  Tripled in size.  Whoa.

Just, whoa.  How are you supposed to feel about that?

They're going to put me on another round of the steroid (that made me feel like hell) and then another week+ of the oral version to taper it, then start me on the Tysabri infusion ASAP.  I need to find a place to do bloodwork pretty much immediately to get on the Tysabri - and did I mention that I'm moving to another state in about a month and a half?  What a freaking nightmare!!!

Oh, and did I mention ... happy birthday to me?  OY!

Don't Move, Don't Breathe, Don't Do Anything Except... Pray

Today was a rough day.

You know what I mean, rough day?  Like, everything makes you want to cry kinda day?  It was definitely one of those days.

Yesterday, my husband got word from one of his dissertation committee members that he may not be able to present his defense at his proposed date - setting us back yet again.  We are on the threshold of moving out to California pretty much in the immediate future, and it looks like I will have to move out without him to start my job while he gets things finished.  Way stressful.  So let's start the day there.

I work in the medical field, and specifically, I see a lot of MS patients for a variety of complaints, mostly balance and dizziness.  As such, I see some of the 'worst case scenario' type of people - young women in their 20's and 30's who are dealing with debilitating imbalance, walk with canes, can't feel any of their extremities, have so much difficulty with cognition that they can't list names in alphabetical order - lots of scary things.  And of course, this morning, I had someone who was on the higher end of MS symptoms.

I truly love my job, because the people I see need me as much as I need to see and help them.  It is healing on both fronts.  But it is particularly difficult for me to see MS patients right now because I'm still trying to figure out my illness, and it isn't something you just casually share with others.  You want to tell your patient, 'I Understand,' because for some of these things, I do - but you keep your mouth shut, and you treat them the best you can, and you listen the best you can, without interruption.

It doesn't help the heartache when they leave that there's very little you can do.  And it doesn't help you feel hopeful that your own condition won't look like that in a few years.  How else are you supposed to feel about MS when that is what you see every week?

Later today, I had another appointment with the radiologist and hour from work.  I knew they wanted a contrast MRI of the brain, cervical and spine, but I didn't know they wanted both with and without contrast, which means I had to lay in the MRI machine for 90 minutes.  That is a VERY long time in a noisy little place where you can't move, have a headache, have claustrophobia, and then have gadolinium put in your arm while they tell you to try not to move while they give you the IV.

Really, like in the movie Atlantis, 'Don't think, don't breathe, don't do anything except... pray.'  It's really how you feel.  And about 80 minutes in, I started to lose it, and wanted to scream to get out.  Something about the sound of the machine when you have the contrast material is different, and it shakes the whole machine, making you feel like you're trapped in a bad car ride.  When I have nightmares, I hear sped up speech and repetitive sounds, just like the MRI.  I almost started to cry, waiting for it to end, counting up in multiples to try and distract myself.

Obviously I made it through okay, but what a nightmare.  I am usually very good with things like that, I hold stock still, but today was so hard to leave and not have someone in the waiting room for me.  Oy.

At least I grabbed a bagel on the way home.  It's Friday, right?  Until next time -

The Swing of Things

In July, my husband and I bought 20 passes to the local rec center to work out.  We are not big workout people, by any means.  I am a fairly skinny person, so cardio work just makes me feel even more small - I try some weight training, but let's face it, I'm much more of a yoga person anyway.  My husband, on the other hand, is a bit larger (no thanks to my cooking) and has things like diabetes running in his family, so the need is much greater for him to make the effort.  He is a naturally stocky person, so he bulks up like a Viking quite nicely when he puts in a little time - win/win, right?

Well, I've been to the gym maybe once since then, did some running on my own, but let's face it - I'm an artist, a musician, a writer, a scientist.  I am NOT a jock.  I was beat up by jocks.  So working out is pretty much the last thing on my list.  My husband didn't go all summer, and he was home every day (he works in the school systems).

Today was not a great day sensation-wise; I have been incredibly stressed out at the prospect of moving to another state for my new job in June, and finishing a doctoral program by no means indicates that I have money, in fact quite the contrary.  I am broke broke broke broke broke.  Not to mention the imminent medical bill from my ER visit to be diagnosed with MS - what a nightmare.  So yes, the stress is taking a toll, and my legs feel really 'springy.'  It was a bad day for the shakes, and my heartburn was acting up.  I don't necessarily think the GERD is part of it, but I do notice that when I get the shakes, I get heartburn.  So, BLEH.

But, nevertheless, my husband and I went to the gym tonight.  I ran.  I ran and ran.  My legs went totally numb and I still ran.  I stretched my very tight muscles, but kept going.  I did a full lap of lunges, some walking, some butt-squeeze walking, some march walking - couldn't run any more, I gave myself muscle failure, but that's kind of the point.  I haven't worked out in so long.  And I don't want to hurt myself and not know it - it would have been very easy to fall into someone else, lose my balance, or collapse, because I wasn't regulating my legs very well.

Tomorrow, I'll be in a lot of pain, and I'm guzzling water.  But tomorrow, I'll be in pain that I can control.  It's a good feeling.
:)