They don't call it relapsing remitting for nothing

So the inevitable happened, I had a relapse.  I've been bragging about how my last relapse was in 2011 and that it wasn't anything super crazy. I also joked and said that with 6 more relapse free years the bank would offer me insurance! I could almost blame myself for this one.

But mostly I blame the last MS medication that didn't work for me. When I went in to the MS clinic a couple months ago, they pointed out new active lesions on my brain. Because of this I had to "wash out" the medication from my body before switching to something new. That meant that for about a month I wasn't injecting or ingesting any disease modifying medication which is when my body decided it was going to war.

One day I noticed that my walking was off - I was limping - and I had a horrible pain down my left leg. This led me to think it was likely just sciatica so I went to a walk-in clinic where they also thought that was the problem, cleared me of a uti and sent me on my way. The walking didn't get any better, and the sensation in my left leg definitely wasn't right...time to call my neuro.

After about half an hour of safety pin scratching, knee knocking, finger to nose touching and hopping on one foot, the nurse practitioner decided it definitely was a relapse I was having. With that, it was recommended that I went on a very high dosage of steroids for a few days to bring inflammation down quicker and then to taper off of them for a couple of weeks.

I swear things with my relapse got worse over the next few days. My right leg was week, left hand and left foot went numb, my sides were super tight and I was still in so much pain plus I was still limping. I felt like I had 2 pairs of socks bunched up on one foot, 5 gloves on one hand, a corset tied tight and that I was laying on a bed of needles.

Plus with the steroids came a whole new slew of side effects.  One minute I was super energized and wanted to do a billion things (unfortunately my body reminded me that I couldn't really move so I just ended up watching a lot of TV).  My senses were overloaded, loud sounds gave me migraines and I just wanted to lay in a dark and quiet room because I was angry with everyone and everything. Next came fatigue, followed by insomnia and then more pain. Legit the most stressful week of my life.

I'm happy to say that after 2 weeks of steroids I am finally starting to feel like things are getting better. I still have one more week to go and as much as I hated the steroids, I am grateful that I took them.

Next week will mark the next chapter of my MS book: Tecfidera.
Please be kind to me and work!!!!

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.