Posts Tagged With: Gilenya


Yes I’m here!

Dang DSL is back up and running and apparently so am I!

There’s a lot of life going on here.  There’s the holidays, doctor appointments, taking care of me (full time job), more disability issues that seem never ending and insecurity there because one entity terminated my coverage which then cut off my healthcare coverage, but then I happened to go on Medicare (having pride issues about going on that at age 35 but at the same time so GRATEFUL to have the coverage) LITERALLY the next day after being cut off, yet at the same time there’s a whole Prescription Part D of the Medicare coverage that I had not enrolled in because I was told by my healthcare people not to worry about that since they would cover the Prescription part of my healthcare, but then that couldn’t happen because they had to cut me off due to the disability entity being connected to my work and they gave me no time to sign up for that part which I believe is illegal, so now I’m trying to find the time, energy and patience to sign up for a Prescription Plan and have to pay out of pocket for my medications until I do so and I HAVE NO IDEA HOW I’M GOING TO GET MY GILENYA MEDICATION FOR MS BECAUSE IT’S SO EXPENSIVE (that’s tomorrow’s priority call), I’m also trying to appeal all of this but before I do that I need to be able to even get through reading the horrible termination letter from this disability entity that is so upsetting for so many reasons, so I’ve been dealing with feelings and emotions, picking myself back up, getting a new hairdo that I plan on showing pictures of very soon, dealing with an undiagnosis of cancer for our dearest Cleo Kitty yet she still has a very sensitive immune system and we are trying to balance all those issues, along with my newly diagnosed IBS acting up because the treatment just isn’t cutting it, along with having multiple sclerosis and lupus, having a really neato husband who’s always there and supportive and trying to spend time with him while he’s making changes, trying to have a social life, doing my best to stay sane, be in touch with lots of people, trying to rest and recover and it goes on and on.

I made that a MEGA RUN-ON sentence because I think it helps to see just how OVERWHELMED I am and how big my life is.  Sure there are a lot of really great things going on but they are intense and I truly believe I’ve been on a spiritual journey for quite awhile that is really helping but a lot of work.  HOWEVER, there are some really seriously scary things going on with this current healthcare insecurity and financial insecurity and a lot of feelings of anger yet at the same time it’s the IBS that’s acting up and my MS and lupus have calmed down.  BUT I have to be careful of that because that could change at any time especially if I don’t do all the self-care I need to do and get enough rest.  And hence things get done when they get done and that’s how it is.  As a person who is a Type A personality at the core and has had to really unwind that over the years, it still hits me every time and I struggle with it trying to get myself to just calm down.

It’s hard to PRIORITIZE right now but I’m taking it moment by moment and breath by breath.  Day by day is the best I can do.  By the way, did you know that BREATHING and taking extra BREATHS helps???  I mean who knew?  I’m really finding out that I hold my breath way too much so I’m trying to work on that.

WOW!  I’m tired just from writing this.  My Cleo Kitty is calling me.  She beckons quite often these days.  Gotta love her.  She is quite a spirit.

I hope you are all well and that I can write more soon.  Take care and I hope you can remember to breathe during this time of the year too.  Turns out it’s quite important to do…





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Reflection: It Started With An Emergency Room Sign

The sign with an arrow supposedly pointing where the Emergency Room was, still sat on the construction wall at the hospital. I balked at how there was still a missing building after all these years and just piles and piles of dirt being moved around.

WAIT. How long had it been, I thought? How long had I seen bulldozers at this site? I could feel my mind’s wheels turning. It had to have been before I became severely ill over 2 years ago and could barely hold myself up on the seat as Corey “rush drove” the car down Santa Monica Blvd. I remembered that same Emergency Room sign that faked us out. It wasn’t a sign pointing into the entrance, it was a sign telling us what street to turn on next–vaguely explaining the location of the actual ER. Talk about a let down. I have never wanted to find an ER so badly in my life. I felt as if my head and body were hardly together and I was so incredibly out of it and nauseous. I really didn’t know if I could make it any longer in a moving vehicle without vomiting. Little did I know, 2 months later I’d be diagnosed with lupus. CRAZY.–And after that I’d know the location of way too many doctor’s offices, where to get bloodwork, the best places to eat, the best places to walk, where to park, which building had which doctor, etc.


THAT was 2 years ago.

Today, as I walked with a bit of a spring in my step down the street even after seeing that Emergency Room sign (I used to cringe and get a twinge inside), I thought about what my Pulmonologist had just said to me a few minutes before that at my appointment. After chatting for a bit, he started reminiscing about how I was 2 years ago. How I had such a hoarse voice, my sinuses were out of control with a major chronic sinus infection, I still had a deep cough that indicated I had a pretty chronic upper respiratory infection that just wouldn’t go away, I had horrible post nasal drip, my throat almost almost always hurt, I felt awful and was very low on fatigue and I could hardly hold my head up to look at him. Now after 2 years of a very strict, proactive and aggressive medical treatment plan (medications including antibiotics over and over again for months, ointments, sprays, taking all asthmatic medication away because it was irritating more than helping, sinus rinses every day, numerous breathing tests, rest, lupus treatment, and all of my other medical care enhancements, him always taking my calls within the SAME DAY, etc.), my voice is much better. I told him today that I thought my voice was still hoarse and he said it was nice to be able to hear me. He used to have no idea how I was able to even talk let alone breathe at all. And to think, I only saw him at first so I could make my Neurologist happy and he’d say my breathing was OK and I would be cleared to start taking the new oral multiple sclerosis medication, Gilenya.

The BEST part of the appointment came at the end. I am still BLOWN AWAY. Call me STUNNED. He said, “Call me if you need me. No need to schedule an appointment. I think we know by now that we communicate when needed right?” and I stumbled all over myself, even stepping back to regain my composure, and said, “Um, yeah. Yeah we do. REALLY? I don’t have to schedule an appointment at all?”. And he shook his head a bit and said, “Nope.”.

My mouth dropped and I felt like at least a layer of weight had been lifted from my shoulders. AMAZING! I wanted to run down the bleak and clinical hallway outside his office and yell to everyone (not that anyone was there) that I didn’t have to schedule an appointment. I had graduated–at least from one doctor anyway! In the past, he had always wanted to see me in a few weeks, a month, then 3 months, then maybe sooner depending on what was going on, then in 6 months (THAT WAS HUGE) and now this! An OPEN ENDED commitment! NO WAY!

I’m still baffled.


So there I was taking my walk down the street after passing that Emergency Room sign and thinking about just how long they’d been doing construction on this building and WONDERING if they’d EVER get it finished and it all started coming back to me. Waves of awareness were flowing in. Flashes of the entire 2 years of good and bad and the journey I’ve taken. This isn’t necessarily unusual for me to reflect but the context was completely different.


It’s slow. Holy moly is it slow–in my mind. BUT part of my journey was finding out that I was a major physical and mental mess and it was going to take a lot of patience (and still does) and one foot in front of the other to get to get healthy. I still have quite a ways to go but I NEED to have hope. Today gave me some more of that.


With the sun (lupus) and the summer (MS) messing with my mind, it is hard to have perspective. Everything acts up in my body and I feel trapped more than during other seasons. I can’t really ever stop being hot. I can’t even really get away from the UV rays (fluorescent lights bother me too) so I’m always just trying to TRUDGE my way through it all and it is HARD.

–By the way, at this point I could point out to the hospital authorities that their Emergency Room sign isn’t that accurate about the actual location and they need to fix it. Do you think they’d want to hear from me about that after all these years? Yeah, I don’t think so either.

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Guess what??

I saw my cute Neurologist today annnnddddd:

My multiple sclerosis is STABLE!

Great news!!! Turns out the lesions I have are the lesions I’ve had FOR-LIKE-EVER and they’re not active! No new ones to speak of. Just the ones that seem to have taken permanent residence on my brain–you know–for kicks and memories I guess. I won’t lie. I sure would like those old lesions to get the heck on out of my brain, BUT I’ll take what I can get.

As my doctor says, “Guess what? You have a beautiful brain!”. Hmm. Thanks…I think?

He’s also pretty darn thrilled with my physical improvement since I first met him almost 2 years ago and he gives me and the oral MS medication, Gilenya, A LOT of credit for that. As for Gilenya, there was a time earlier this year that he was worried about the reports of deaths while on it. Turns out, none of those deaths look like they are connected to Gilenya AT ALL (so sorry these people died BUT so relieved to hear it wasn’t Gilenya) and if there’s even a hint of a connection, they have nothing to do with my clinical make up and he is VERY HAPPY to keep me on it! Well OK then!!!

This Neurologist continues to be my favorite Neurologist so far which is saying A LOT since I have had crappy luck with these specialists in the past and I think he’s my 9th Neurologist in 10 years. It’s not just because he’s cute either. REALLY. No really. He’s knowledgeable, patient, compassionate, takes the time to talk to me, answers ANY and ALL of my questions, asks me about ALL of my health issues because he believes his MS patients can’t be truly healthy without taking care of the WHOLE body, his Assistant rocks it in the Assistant Department (and could give classes about how to handle Patient and Doctor demands), he responds very quickly to phone calls, he’s personable and quite humorous, pays attention to detail, he was very understanding when I had to cancel an appointment due to being sick, he’s proactive, and apparently he’s one of the top MS Specialist Experts in the country. You’d never know that from him. He doesn’t talk about that at all. I hear it from his colleagues (all the other doctors I see who work with him). Oh and did I mention he used to be a JAZZ MUSICIAN in a past life??? How crazy is that? How does that happen?–First a Jazz Musician, then a Doctor, then a Neurologist, then an MS Specialist??? When I asked him about the connection, he said, “I’m a Nerd.”

My clinical neurological tests during the exam went okay. I think I had some issues. He knows I’ve done those tests a bazillion times so he tries to trick me and ask me what I ate a week ago (not last night or this morning but a week ago). He tries to pull questions out of thin air and ask me what I don’t expect. When I answered the spelling of “orange” correctly (kinda hard to spell with your eyes closed–you should try it), he said, “OK Smartypants. Let’s see what else you can do”–and after he had me do a few more tests he told me to spell “orange” backwards…and then giggled about it. Yeah ha ha. Thank goodness I’ve always been a good speller and visualizer. Now you try spelling orange backwards with your eyes closed. HARD RIGHT????

So that’s that. My MS is probably just acting up because it wants to and because it’s been hotter. AND it takes nothing for me to get hotter when it’s extra sunny. And wouldn’t you know, he says I have a case of the “Double Whammy”…hmm…sensing a theme here. Isn’t that what my Rheumatologist said about lupus and MS last week???

So to end the appointment, he told me to “stop being so hard on myself.” He pointed out that I have multiple sclerosis AND lupus. Enough said I guess. I don’t know why that can’t stick with me more and I can’t accept that as ENOUGH.

Guess I just want to live a “normal” life WITHOUT multiple sclerosis and lupus.

BUT since that doesn’t seem to be in my near future (an obliteration of any disease at this point), I’ll continue to practice this “RESTING” thing that is all the Rage with doctors these days and TRY to be gentler with myself.


Categories: Appointments | Tags: , , , , , , , , | 4 Comments

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