long overdue update!

So I guess the last time I blogged was when I had my MRI last year and so much has happened since then!

A few months before that last MRI I went to the MS clinic to talk about my DMT (disease modifying therapy). As I've written before, I was on Rebif, a medication that I would give myself by needle 3 times a week. After a couple years, though, I just couldn't do the needles, bruises, chills, hangover feelings and anxiety anymore. Halfway through my conversation I was in tears and the nurse practitioner decided that I should look into a new treatment.

Not even a week later and I started my adventures with Aubagio! A tiny little blue pill that I would take every morning when I woke up. Along with the pill came a few gastrointestinal side effects but nothing that I couldn't manage and that only lasted a couple of months.

Fast forward through a vacation to Arizona and another to Mexico. Not too long after that I bought, renovated and moved into my first place! Work was work, a few friends came and went, I continued dating the sweetest and most understanding man and I gained a sister-in-law! Definitely a good year for me!  2016 is looking pretty promising already with a couple of my best friends getting married and my MS seeming to stay under the radar.

A month and a half ago I had my follow up MRI and a week later my neurologist wanted to see me. Apparently when the neuro wants to see you a week after a test, it's usually not because they wanted to say "good job".  She broke the news that since my last MRI I've gained 5 new lesions. Now that might not sound like a lot but over the course of my Rebif days, I gained 0.  This means that the Aubagio has not been working for me :(

Since Aubagio stays in your system for quite a while I have to work on flushing it out quicker by drinking this horrible murky orange water drink 6 times a day for 11 days. And if that doesn't work...which of course it didn't...I have to do it again.

Once I finish this flush and I do another blood test to (hopefully) confirm that the Aubagio is no longer in my system and the neuro gives the green light, I get to start the next chapter in my DMT book...Tecfidera! Here's hoping that this is the one for me.

Dating and MS

Oh hey there, it's been a while...

I thought I'd post some of the blogs I wrote for a website a couple of years ago. Unfortunately that website isn't around anymore and that makes me sad since I really used their resources. Anyways, here's a post I wrote about dating & MS!

As a single young lady in a new city, I find myself spending a lot of time meeting new people whether that’s out at the bar, my local bookstore or through my circle of friends. Often times, these new friends can lead to dates.  Since my diagnosis I have been on quite a few dates and to this day I still don’t know whether or not to disclose my disease or even when I should tell someone.  Dating is hard enough as it is so when you throw in a curve ball like Multiple Sclerosis, it can make it even more challenging. I’ve basically tried most scenarios from telling my date right away, to waiting and even not telling at all.

Disclosing on the first meeting can sometimes be a turn-off.  Some people might find this is too much information for the first time you’re meeting them.  They might be uninformed or have little knowledge of Multiple Sclerosis so they may think the worst.  On the other hand, they might be accepting right away and recognize that this disease doesn’t change the fact that you both like the same TV shows or love to travel

To be honest, waiting is usually the route I take.  I wait and see if this new relationship is going to go anywhere and if this person is important enough to me to let them know about my MS.  If I feel that things aren’t going to turn into anything serious, then I won’t bother saying anything.  But if there seems to be potential, then I usually muster up some courage and go along with my well-rehearsed speech explaining the disease that I was diagnosed with a few years ago.  I don’t usually get into too much detail unless they start asking more questions.

I’ve had a few people just ask me what is wrong with me.  I’m used to talking about my blogs, medication and symptoms with friends so when it comes up with people that don’t specifically know about these things, they often catch on and eventually ask what is up with me.  Often I’m not prepared to give them the speech and I just say that “it doesn’t matter,” “it’s a long story” or “I’ll tell you some other time.”  This almost always gets them to dig some more until I finally open up.

Then there are the few people that I don’ tell at all – even some that I’ve grown close with – but that I felt didn’t need to know about my MS.  I liked where our relationship was at and didn’t think it was important enough to bring up.

None of these circumstances concluded the same way.  Most people were completely accepting no matter when I told them; a few were confused or even deterred by the information.  Unfortunately MS is a part of me and always will be.  If someone can’t welcome me for who I am, they aren’t worth my time.

Thoughts from the MRI tube

Oh hello there strangers. I promised I'd update my blog and as I was laying perfectly still in the MRI tube tonight I figured I should right about the random thoughts that went through my mind during that 45 minute test.

• She said this will take 45 minutes, can I sit still that long?
• Here we go, stay really still.
• My eye is itchy. 
• K don’t move.
• Breathe in and out…but don’t move.
• Why is it so cold in here?
• This is almost like being locked up in a casket!
• That was a horrible comparison. Change the subject.
• K I can do this.
• Oh she just talked to me, the next one is 2 minutes.
• K so that means it’s been like 3 minutes so far, almost done.
• I can’t wait to send a picture of the hospital clothes to my friends.
• Was I supposed to tie the gown in the front?
• No, that would make no sense.
• Next round is 3 minutes and she said the machine might move…what does that mean?
• Oh. Kinda like a massage chair!
• Ughgh maybe not.
• So I’m like 8 minutes in by now??
• Oooh this one sounds like a song I’ve heard at the club!
• Dun dun dush dun dun dush dun dun dush.
• Dun dun dush dush dun dush…wait no, that’s not how it goes?
• Are we done yet?
• My eye is itchy. 
• I want to move my legs, maybe I’ll try when she talks next.
• My head…I need to scratch it. Maybe I caught lice from the blanket she put on me.
• Don’t move.
• I wonder if when I swallow it messes anything up.
• I wonder if they can see what I'm thinking of.
• My eye is itchy.
• Oh she’s taking me out! Time for the dye!
• I can move a little!
• Nope, she told me to stay extremely still.
• I hate needles.
• Needle in left arm didn’t hit the vein properly - fuck.
• Now she’s in my right arm.
• Fuck needles.
• Staying still. 
• Why does my arm feel cold?
• Back in the tube. I can do this! She said two more scans!
• Maybe I can fall asleep.
• Nope.
• What if I have to go pee?
• What if I accidentally squeeze the alarm button?
• Omg I should get ice cream after this, I deserve it!
• It’s like -20C out and there’s a foot of snow, ice cream is a bad idea.
• Where did I park again?
• I hope I don't get lost getting out of here.
• How much longer?
• I think I have to pee soon.
• My arm hurts.
• Oh I think it's done!
• Don’t move just in case.
• Smile at the nurse, pretend like you’re fine.
• Whoa this is a completely different nurse.
• I'm so confused.
• Crap, my arm is bleeding.
• I wanna pass out. 
• I should ask for bandaids…for BOTH of my arms.
• Ugh I can’t believe I have holes in both arms.
• Don't fall down.
• Yay I’m free!!
• These pants are kinda comfy, I wonder if I can keep them….

I'm thinking I'll give the MS clinic a call next week to find out if they'll book an appointment to go over my results. And hopefully by the weekend I'll write a real post on an update! So much has happened since my last post!!

What do you usually think of while getting an MRI? Do you fall asleep? Do you hate them the entire time?

happy anniversary!

Over the past two years I've been faithful.  I've never cheated, I've never lied, and the times that I've wanted to give up I worked through it! I've argued and cried and have been hurt a lot.  People say you shouldn't be in an abusive relationship, but all of the ups outweigh any of the downs.

I'm talking about my disease modifying therapy.  It's been 2 years, 312 needles, countless ibuprofen and 0 new lesions on my brain.  As much as I hate having to give myself an injection three times a week, knowing that my disease has slowed down makes it a little bit more reassuring.

Happy anniversary rebif!! It's been a blast! 

#yolo

The phrase 'you only live once' isn't a phrase I like to use often.  It's thrown around and it's a horrible excuse to justify doing stupid things.  But after today, I see a different definition in this overused phrase.

Today I met an older man who was talking about his "sick son" and telling me how he's in wheel chair and has limited mobility, explained how he can't walk and needs to be bathed and fed.  Eventually he told me that his son has Multiple Sclerosis.  When people say something like this, I think they expect you to feel bad for them and start apologizing.  Not me! Every person that sadly says they have MS or their family members do, I speak up and say "so do I!!" with a heartfelt smile on my face.  This threw the man off a bit but his attitude changed and in the friendliest way he told me "it's not that bad."  So we started talking some more, he let me know his son was diagnosed in his early 20s and he's now in his 40s.  

I know this disease affects everyone differently - no one knows when or how it will attack you next - something could happen tomorrow, next week, next year, next decade or not for a really really long time! But you will never know.

On my way home today, the song Live Like You Were Dying by Tim McGraw came on the radio. 

I've always loved this song but today it sunk in a little deeper.  Lately I've been contemplating a lot of things before I do them.  Little things like shopping and cooking to bigger things like friends, work and travel.  I need to stop doing that and I need to live like I'm dying, make decisions based on the fact that there might be a day where I won't be able to do it.  

With that being said, you only live once.  Vegas 2014??

lovelovelove

I tend to go back and read some of my old posts and I often think “wow, that’s good - who wrote that?”. I think I get in a sort of zone when I start writing.  I almost always have a topic in mind, write an entire page and then go back and completely tare it apart and change it all. 

The last post I published ended up being removed.  I felt that I wrote it while I was in a bad mood.  I can almost describe that feeling as if when you go to the grocery store hungry and you buy everything in sight. I was feeling upset so I let it out on this blog.  I did repost it though so I can go back and read it again.  It can remind me of a place I want to stay away from.

I think tonight I just wanted to thank everyone for all of their support.  Each and every one of you that read my tweets or blogs, I am so appreciative!

xxo

confession

I have needle fatigue.

I'm coming up to my 2 year anniversary with my disease modifying therapy and it's getting harder and harder to do my injections.

Each shot only takes a total of 5-10 minutes of my time, and it only hurts for about 30 seconds...but each shot can also keep me up at night or make me feel like I was hit by a truck the next morning or sometimes both.  I get hot flashes during the night, muscle aches and even chills. I take a minimum of a tylenol the night of and an advil the morning after, my poor liver probably doesn't even know what to do with them anymore.

My anxiety has gone through the roof and I'm almost ready to recognize that I might even be borderline pessimistic. I have dry skin, my hair is thinning and I have beautiful red marks on my thighs, stomach and backside.

Over the past 2 years, I've stuck it out and haven't skipped a shot...not even one!!

These shots are getting to me and I'm ready to quit.