Monthly Archives: June 2013

*waves* Hello there.

Posted in Just Life., Multiple Sclerosis by

If I didn’t know any better, I’d think I stopped caring about this blog at all. The truth of the matter is that I’ve just fallen out of the habit of journaling… and that’s not a good thing. So, today, I’ve decided to write, even if it’s a little disjointed.

What’s Going On With Me

Today marks the 20th day that I’ve been off any kind of disease-modifying drug for MS.  I have to say, I physically felt better when I was on Copaxone than I do now. Over the last 3 weeks, the numbness/tingling in my back has become more prominent; I’ve had a lot more fatigue; and cognitive fog has been almost constant.

Why am I not on Tecfidera yet?  Because you can’t do anything with MS medication without jumping through hoops of fire.

Last week, I found out that Humana/Medicare had denied my request to have Tecfidera as my DMD (disease modifying drug) because I had not already used every other available DMD on the market.

Why have I not been willing to take Avonex, Betaseron, Rebif, or Extavia? Because they’re all injectable interferon medications – and all of them cause depression. As someone who’s been treated for major depression for going on a decade now, my neurologist and I agreed that they would be bad for me.

I did some homework on the whole process of getting medication approved after a denial, and called Humana Greivances & Appeals. I asked for an expedited appeals process (which means they have 72 hours to make a decision because the medication is necessary for a life-threatening illness), and contacted my neurologist to get them supporting information as quickly as possible.  On Saturday, I found out that I have been approved!

So, now I’m just waiting for the mail-order specialty pharmacy to call me to schedule delivery. It occurs to me, as I write this, that I can and should expedite that process by being proactive and calling them instead.

Puff, Puff, Pass?

Speaking of medicine and expediting things… Medical marijuana has been passed in the IL house and senate. We’re just waiting for Governor Quinn to do the right thing and sign it into law. I’m trying not to think things like, “It’s been 20 days since you got it, Gov! Get on with it!” and instead am being patient.

I haven’t been using cannabis much at all over the last several months. There was a time when I lived in CA, was doing a lot of psychological work on my PTSD, and didn’t understand dosing (and thought I could make all my emotional and MS pain disappear with weed), when I smoked nearly all day, every day. I was, very simply, losing my mind then. I am very glad those days are behind me.  Now, I only use it when I have a bad PTSD flashback  (which, thankfully is very rare nowadays) or my other medications just can’t get the pain-management job done, and I’m pretty much desperate for relief.  I think the last time I had a friend source some for me was in December, and I only bought an eighth then. I’ve still got about half of it. This is a huge difference from the end of 2008-early 2009 when I was living in Glendale, CA, and went through about 3 eighths a month.

I still miss CA’s set-up though, and it’s what I’m really hoping for here in IL. I want my “license to use” and to be able to walk into a secure dispensary, see what’s available, and choose the medication that is right for my needs. I miss the opportunity to decide what kind of weed I’m getting!  There are more than a hundred strains of marijuana, and each one affects you differently.

When you’re in prohibition-land, you can’t be choosy. You take what you can find, and what you find is not always helpful. Sometimes, it’s even harmful. You could end up with a strong sativa that wakes up your body and leaves you mentally foggy when you actually need an indica that helps calm anxiety and ease pain that lets you continue functioning normally within your day. Getting the wrong kind of weed has happened to me more times than I’d like to admit since moving here.  This post by Berkeley Patients Care Collective goes into much more detail about this, and gives recommendations of types of strains for the medical needs you might have.

I’m also hopeful that the bill passes so that I can buy concentrates and use something like the CANNAcig. It would be very beneficial to be able to use what is essentially an e-cigarrete that’s been modified to work with cannabis. It is less smelly and has all the benefits of vaporizing versus smoking.

I also miss edibles, which are even better for helping with body issues and aren’t bad for your lungs at all. I remember when we were in CA, Adam and I talked about the possibility of me creating edibles for the dispensary that I used to go to. I really like cooking/baking.  Now that I’m not having seizures all day, I might be able to actually do something like that.

So What Am I Doing?

Right now, I’m still “just” a housewife. I do laundry and dishes. I go to the grocery store and I cook. Life’s simple, and that’s not bad. I really appreciate that I can take naps when I need to and that I’m able to give Adam freedom from some chores that he doesn’t particularly enjoy which I don’t find offensive.

I also have been working pretty hardcore on physical fitness, tracking my calories and nutrients on MyFitnessPal and working out 4-5 days a week at the YMCA up the street, doing weightlifting and cardio with ActivTrax. I wish this Y had late afternoon/early evening yoga classes like the YMCA in Collierville, TN did — but if I want to do yoga here, I’ve gotta get there at 8:45 a.m. Frankly, I couldn’t get myself to 9 a.m. classes in college and I barely made my 10 a.m. classes in law school. My sleep schedule has basically nixed group yoga for me for the time being.

Since the seizures have more-or-less disappeared (aside from when I have pseudoexacerbations, relapses, or am trying technology that doesn’t jive with seizures), I’ve done a lot of thinking about whether or not I want to take the IL bar exam and become an attorney, and when it comes right down to it, I do!  But the test costs $850 and the prep course costs $2050. This means that before I can even attempt the test, I have to find a way to earn $2900.

I’ve been applying for jobs for months now with no response. The economy is fucked, and no one wants to hire someone whose last real job was 8 years ago. I can’t say that I blame them. Who wants to hire an administrative assistant with a law degree when you can get one without a J.D. for cheaper and she won’t want to move forward with her life in a year?

This has lead to me realizing that I should just market my services as a web & graphic designer again.  I used to make about $450 -$500 per project when I was freelancing. 6 or 7 websites could mean that I get to take the exam. I’m even thinking about hitting up a good friend who has a successful web design firm to see if he would want to outsource any of his front-end design work to me.

I was concerned with the idea of freelancing somehow messing up my SSDI (I need to keep Medicare), but you’re allowed to earn up to $14,000 a year without it affecting your status. You just have to declare it.

This means that I need to create a site for myself as a designer, first and foremost. Next, I need to build my portfolio and see just what work I have on the web that’s still up there.  I am, of course, procrastinating on this, because, well, it’s what you do when you’re unsure of your plans.

What I am sure of, however, is that my life has at least a bit of forward trajectory at the moment, which is nice. There was a while where I was concerned that I’d become that girl who sits around at home and “does nothing” all day long because the work she actually accomplishes is mostly invisible. (There will always be dishes. There will always be laundry. The house will always need straightening.)  I’m not so concerned about that now.

I am, however, concerned that if I don’t stop writing and get off the computer, none of my invisible work will be done today — so I’ll wrap it up here and say thanks for reading. ❤

Ch-ch-ch-ch-Changes!

Posted in Just Life., Multiple Sclerosis by

Hey there, party people. It’s been a long time since I last updated, and for that, I apologize. There’s been a lot going on over on this side of the screen. Some good, some bad, but that’s how life goes.

The Medical Mambo

I think that the biggest item of news that I have to share is that I am no longer on Copaxone!

After 6 full years of nightly injections, my last shot was June 2, 2013. On the 3rd, I had an appointment with my MS neurologist, and he told me to stop. Because my MRIs from last year show significant growth on the existing lesions in my brain, and because Copaxone has only been studied as safe for use for up to 3 years (I’d been using it for double that!), together we made the decision to change therapies over to the newest MS drug to hit markets — Tecfidera.

Tecfidera is a twice-daily oral medication, so I don’t have to give myself any more injections.  I love that.  People have written plenty about fighting needle fatigue, but until you’ve got craters of missing fat on your body and don’t actually remember what it feels like to go to sleep without feeling like you’ve just gotten a bee sting somewhere on your body, you don’t really get just how much energy giving yourself repeated injections can take out of you.

Right now, I’m at an in-between period. I’m not on any disease modifying drug at all, while I wait for Humana, Medicare, my doctor, and the pharmacy to get everything sorted.  According to Dr. J, Copaxone stays protective in your system for a full month, so as long as I start Tecfidera by Independence Day, I should be good to go.

It’s been nice to not have to take as much medication as usual. I would have thought that being without Copaxone in my body, I might feel better… but since quitting Copaxone, I have had a lot more fatigue and have been emotionally unstable.

Don’t get me wrong — I don’t think that Copaxone was stabilizing my moods. In fact, I remember having to start anti-anxiety drugs after I started Copaxone because of how the medication affected me.  But right now, my body is now like, “What is this? I don’t have this thing that I’m used to.  I should probably freak out.”  And it’s so good at freaking out and messing with my plans. (For example, I was supposed to go visit my parents this weekend, but on Monday, I literally couldn’t get out of bed and ended up sleeping 17 hours out of 24. I cancelled the trip that day because I didn’t think I’d be up for travel by Friday, and I was right.)

Am I excited about starting Tecfidera?  Honestly, no. I have many friends on it and even a family member who takes it.  And they all have had to deal with flushing and serious gastrointestinal issues because of it.

One of my recent medical changes is that I have been diagnosed with GERD (Gastro Esophageal Reflux Disease) and been put on generic Prilosec.  I am seriously hoping that taking the Prilosec will be helpful when it comes time for me to be on week 2 of Tecfidera, because that first day of the second week (when you go up to full dose), every single person I know has ended up either throwing up, having horrible diarrhea, or both.

I’m actually kind of scared of Tecfidera because it basically kills off 30% of your white blood cell count. 11% of patients on the drug end up with leukopenia (a potentially dangerous decline in white blood cell count).  But, when I looked at the side effects of all the other disease modifying drugs on the market, it actually had the smallest amount of potential side effects — and *all* of the other drugs affected white blood cell count as well. Tecfidera at least has really good numbers for stopping/significantly slowing progression of the disease — and that’s what matters most to me, so I’m willing to take the gamble.

My New Normal

One thing that totally blows about having MS is that you know that you’re going to start to rack up lots of little problems in your body.  I had been fortunate, prior to this past relapse, in that all of the really annoying, noticeable symptoms of my MS (besides seizures) had been quashed with Solumedrol or a medrol dose pack.

This past relapse, I was not treated with Solumedrol.  I was just given a medrol dose pack.  It helped significantly.  I regained feeling on the left side of my chest, the increase in seizures stopped (I’ve been seizure free for a week now), and the pain in my legs and back stopped.  But the electric tingling going on with the left side of my back: it’s still there.

Imagine, if you can, that fuzzy, painful, pins-and-needles feeling you get right when you wake up when your arm has gone numb from sleeping on it wrong. My back, on the upper left side, feels like that almost all the time now.  For a while there, it was terribly annoying, but it kind of feels like a humming thing now. I don’t  know if that makes sense. It’s like sometimes, I can sort of tune it out.

I asked Dr. J if I should have a Solumedrol treatment to take care of it, and he said he would be concerned if it was painful, but that this is just part of MS. He doesn’t like to administer IV steroids if he can avoid it because of their negative consequences to your body. I can respect that, so I am trying my best to tolerate the way things are, knowing that I’ve got it a lot better than many of the other folks out there with MS.

I am MIGHTY!

One of the things that is important, but often not focused on, for folks with MS is the absolute need to exercise. Without sufficient exercise, your muscles will atrophy, and fighting fatigue becomes harder and harder. In fact, the fatigue that makes you not want to exercise is self-perpetuating in that way.  Now, don’t get me wrong: everyone needs to exercise; those of us with MS just need an extra kick in the ass to do it because our bodies will tell us not to.

For the last 2 months, my husband and I have made it to the gym at least 4 days out of the week, if not 5. Usually, 3 of those days includes weightlifting.  I was pretty excited last week when the computer program that figures out our routine (ActivTrax) gave me the message, “Congratulations! You are no longer a novice! Welcome to intermediate training.”  I was stoked to see the progress I’ve made. For example, I started out on the leg press at 85 lbs. Wednesday, I did 2 sets of 20 at 160 lbs without batting an eyelash.  I also can run 20 minutes on the elliptical machine now without fear of having a seizure from overheating. That endurance was fought for.

Sure, there are days when I can’t work out – and on those days, I don’t. (You’ve got to be compassionate to your body, whether you have MS or not!) But the big change for me is that when I can work out, I do, without feeling that whiny “I don’t wanna” feeling. I actually have come to the point where I look forward to the activity and feel proud of myself every time that I make the positive effort to better myself through exercise.

Have I lost a lot of weight? No. I’ve actually gained some… and to be honest, that’s kinda disappointing to me. My measurements, however, have shrunk! I can see a difference in the mirror. So, I am gaining muscle and losing fat. I have to believe that eventually, my metabolism will pick up.  I’m food journaling on MyFitnessPal and am paying attention to calorie count and percentages of fat, carbs, and protein.  So, I know that I’m doing what I need to do in order to be healthy and lose weight. It’s only a matter of time (and patience) until I look like I want to.  But vanity isn’t the point of all this: improving my health is.

I hope that those of you reading this are doing well and are inspired to challenge yourself physically. It’s worth it. (And so is enduring the soreness afterward.) I also hope that you remember to be brave and try new things in life.  It’s only by being brave that things can improve!