Tag Archives: Copaxone

My Future’s In My Hands

Posted in Just Life., Multiple Sclerosis, Paleo Diet, Recipes by

Can you feel me?

This has been one heck of a week. It started on Monday morning when I woke up with absolutely *no* feeling in my hands. That was scary as hell. I could still move them… I just couldn’t feel them. Surprisingly, I could mostly type. Maybe it’s because I have it so hardwired into my muscle memory. I type most of the day 5 days a week.

I repeatedly asked Adam to take me to the emergency room, but he thought we should call the neurologist again (I had called prior to 9 am and again at 10:30 am) and wait to see what he wanted me to do. The answer came around 4 in the afternoon –come in on Tuesday to see him. So, that’s what we did.

Fortunately, when I woke up on Tuesday, I could feel my hands again. They were burning and stinging terribly, but at least they felt like they were *there.* Dr. J took out a safety pin and told me to close my eyes and let him know when I felt something. I didn’t really feel the pin until he was at the upper part of my arm. I felt a little pressure, but certainly no sharpness. I thought he was playing a trick on me or something. I really didn’t feel the pin at all on my hands. Adam, however, has assured me that I got poked repeatedly. This did not sit well with me.

Dr. J asked what I wanted to do. I told him that I’ve always had solu-medrol when I had an acute MS exacerbation, and was immediately told that there’s a national shortage of solu-medrol right now and that he couldn’t give me any without MRI proof that I have new, active lesions. (Maybe I’m being simple, but isn’t suddenly and completely losing feeling in your hands prima facie evidence that you do have new, active lesions in your spine?)

So, instead of putting me on an IV of corticosteroids, he prescribed a second medrol dose pack (I took 1 two weeks ago and it only got rid of the numbness on my left side.) and scheduled MRIs of my brain and spine for 3/21. I then see him on 3/25 to discuss what the MRI showed.

For anyone playing the, “How long has this shit been going on?” game, that means that it will have been 15 days between losing all feeling in my hands and a discussion about what my MRIs show. To me, that seems like a really long time for something as important as use of your hands. Moreover, I will have finished the medrol dose pack on 3/16, which, if it works, would make the new lesions inactive, right? I wish I understood his methods, but I have to trust that an MS Specialist knows more about this disease than I do.

He also was not pleased that this happened only 4 weeks after quitting Gilenya so that we can try to start a family. He said that depending on what we see on the MRI, we’d have to have “a very serious discussion.”

I said, “We haven’t even had the chance to start trying.” I’m not going to choose to not have a family because I had one ill-timed exacerbation. That’s just crazy. I’m guessing he might try to get me to go back on Copaxone, since you can be on it even during pregnancy. I only stopped using Copaxone because he said it wasn’t doing anything for me, but I felt so much better when I was on it, regardless of how much I loathed giving myself a nightly injection.

I have no idea what the right thing is to do, to be quite honest. The only thing I do know is that if he suggests that I should not get pregnant, after all the work I’ve done to prepare my body, I’ll be getting a second opinion.

Clean Bill Of Mental Health

During the time that I lost feeling in my hands, I also had a huge up-tick in seizure activity. I was so scared about how many seizures I was having that I actually contacted my therapist so that if any of them were pseudoseizures (like many were back when I was working with EMDR), I could do the work to stop them.

Well, it was good seeing Karolina for the first time in over 6 months if for no other reason than I enjoy talking with her. I was very pleased when she let me know that I am not experiencing pseudoseizures and that I am in such good mental health that she doesn’t want to hear from me again unless I am going through some difficulties and really need her or have some happy news to share with her.

I talked to her about all my worries (none of which were irrational automatic negative thoughts!) – about what could happen if I lose all feeling in my hands and I’m holding my baby, and she said that it’s a legitimate fear, so my best course of action is to be extra careful to pay attention to my body and be safe with the baby. You know. The baby I don’t actually have yet.

My current challenge is to only worry about handling things when there is actually something to deal with! No fighting ghosts. My real job in all of this is to be fully present in the now and to continue to practice good self-care. So far, so good.

Cheesy, gooey goodness…

On a completely different note: I’ve been thinking more and more about how I really miss cheese when we’re being strict with the paleo diet.

Don’t get me wrong — I know the plan was to be strict during lent, but when you’re dealing with an MS exacerbation, you don’t always have the time or energy to cook and clean the way you need to in order to be eating clean. I have to confess, I’ve had pizza this week… more than once. And I don’t regret it even a little.

I did, however, decide, on a whim to google “paleo cheese” and was surprised to see information pop up! Apparently, there are a kajillion different kinds of vegan cheese that also fall under our paleo guidelines. (Ok, so apparently a kajillion is a term in my mind that means “more than 20.”)

To celebrate this, I created another board on the Paleo Compendium just for paleo cheeses.

The one I’m looking the most forward to trying is this Velveeta-wannabe.
vegveeta

I’m hoping it’ll actually be melty and good to use when making enchiladas or jalapeno poppers.

I’ve also been thinking that I should create a graphic for the Paleo Compendium that folks can use to link to it.

MS Walk 2014 – Chicago Lakefront

It’s been a few years since I participated in the yearly fundraising efforts of the National MS Society because of seizures. For almost 5 years, seizures stopped me from feeling comfortable with exercising. Heck, I didn’t feel comfortable even walking anywhere alone. I didn’t feel safe. Fortunately, this year, I’ve overcome that fear.

Nowadays, I regularly hit the gym 4 days a week at least. Some days, I’m even so awesome that I can bike 12 miles in 45 minutes! 🙂 But I’ve also had a few days here and there where I’ve ended up seizing while on an elliptical strider or during weightlifting, and have had to go home. 😦 At least I tried! No matter what I’m doing when I’m at the gym, the goal is to honor my body, so I work out with Adam and am very careful not to over-do it.

Yesterday, I created a team for MS Walk 2014! It’s Team MS EL Redux, named after the support group that I participate in on Facebook. You don’t have to be in the group to join us or even in Chicago! You can be a virtual participant and help us raise funds if you’d like to.

I also personally registered both Adam and me for the walk. Here’s a link to my personal fundraising page. I’d really appreciate it if you would donate! And if you don’t have the funds to donate, don’t sweat it. I’ve been there. Please share the link! Every little bit of promotion helps!

Here’s a shorter link: http://main.nationalmssociety.org/goto/rachaelshapiromajka

Hope you’re having a great day! Thanks for stopping by. ❤

Despite Multiple Sclerosis…

Posted in Multiple Sclerosis by

Yesterday, a good friend whom I admire and respect left a link for me on my Facebook timeline. The text that he wrote to accompany the link was “Inspiration of the day.” What followed was a link to an article about a woman who, 3 years after her MS diagnosis, has chosen not to take any MS medication and instead to run a marathon every day for an entire year, finishing the year with a double marathon.

Now, I know this friend pretty well, so I am entirely certain that he had good intentions and was looking to lift me up when he sent me this article. I am not upset with him, and I deeply appreciate that he holds me in his heart and wants to remind me that I am capable of more than I think I am.

That being said, something that people who don’t have a chronic disease often don’t understand is that when you send links about people who have your disease doing incredible (sometimes ridiculous) things, it is not inspirational. It is a form of shaming.  It suggests that the disease you deal with on a daily basis really isn’t that bad, and that anyone with that disease ought to be able to do the crazy-ass thing that this person, who has your disease, has chosen to do.

Diagnosed with MS? Climb Mt. Everest!

I remember when I was initially diagnosed with MS, Teva Pharmaceuticals sent me an information packet, asking me to be a part of Team Copaxone – a bunch of folks with RRMS who do things like climb Mt. Everest, lead a team to the South Pole, participate in the Para-Olympics, and so on… (from the Teva Pharmaceuticals website) “Team COPAXONE® is a group of individuals with RRMS who have different talents and aspirations, yet one common objective: to live the lives they have imagined despite their disease.”

I remember thinking, “I’m finishing law school and am going to take the bar exam despite the fatigue and cognitive problems caused by RRMS. I’m kind of like the folks in Team Copaxone! I won’t let anything stand in my way!”

And I did complete law school.  I even took the 3-day CA bar exam twice.  I didn’t pass either time, though I was close — and I blame the fact that I didn’t pass on the constant seizures I was experiencing at the time. (It’s hard to pass a test when you have seizures that cause you to fall out of the chair you’re in and bang your head on the desk while you’re taking it.) These seizures were caused by MS.  So no matter how much I wanted “to live the life I imagined despite my disease,” I couldn’t.  That doesn’t mean that I didn’t give it everything I had.

It’s not that you’re inferior. They’re just so superior.

When folks with MS get media attention for do amazing things, like training for the Kona Ironman competition, modifying bicycles so they can pedal with their hands and participate in 2-day long bicycle races, continuing to pursue a lifelong dream of being a basketball player with the NBA, have a booming career as the mascot for an NFL team despite heat intolerance, or be a Major League Baseball player, people who are not knowledgeable about the disease think that the rest of us ought to be able to do these things.

To make it worse, you’ve even got fictional characters, like President Josiah Bartlet of the West Wing, messing with the understanding of the disease for your average person.

The bad logic isn’t hard to follow: If there are people who have MS that can succeed as professional athletes or political figures, people with MS really aren’t that disabled. They’re just holding themselves back.

While I wish that were the case, it simply isn’t.

This is what MS does to you.

Multiple sclerosis is different for every person that has it, for many of us, the symptoms are severely disabling.

The most common symptoms of MS (courtesy of WebMD):

“Abnormal sensations: People with MS often say they feel a “pins and needles” sensation. They may also have numbness, itching, burning, stabbing, or tearing pains. About half of people with MS have these uncomfortable symptoms. Fortunately, they can be managed or treated.

Bladder problems: About 8 in 10 people have bladder problems, which can be treated. You may need to pee often, urgently, need to go at night, or have trouble emptying your bladder fully. Bowel problems, especially constipation, are also common.

Difficulty walking: MS can cause muscle weakness or spasms, which make it harder to walk. Balance problems, numb feet, and fatigue can also make walking difficult.

Dizziness: It’s common to feel dizzy or lightheaded. You usually won’t have vertigo, or the feeling that the room is spinning.

Fatigue: About 8 in 10 people feel very tired. It often comes on in the afternoon and causes weak muscles, slowed thinking, or sleepiness. It’s usually not related to the amount of work you do. Some people with MS say they can feel tired even after a good night’s sleep.

Muscle spasms: They usually affect the leg muscles. For about 40% of people they are an early symptom of MS. In progressive MS, muscle spasms affect about 6 in 10 people. You might feel mild stiffness or strong, painful muscle spasms.

Sexual difficulties: These include vaginal dryness in women and erection problems in men. Both men and women may be less responsive to touch, have a lower sex drive, or have trouble reaching orgasm.

Speech problems: Sometimes MS can cause people to pause a long time in between words and have slurred or nasal speech. Some people also develop swallowing problems in more advanced stages of MS.

Thinking problems: About half of people with MS have trouble concentrating that comes and goes. For most, this means slowed thinking, poor attention, or fuzzy memory. Rarely, people can have severe problems that make it hard to do daily tasks. MS usually does not change your intellect and ability to read and understand conversation.

Tremors: About half of people with MS have tremors. They can be minor shakes or make it hard to manage everyday activities.

Vision problems: Problems with your eyes tend to be one of the first symptoms. They usually affect only one eye and go away on their own. Your sight may be blurry, gray, or have a dark spot in the center. You may suddenly have eye pain and temporary vision loss.

Very rarely, people with MS may have breathing problems or seizures.”

There is no cure yet for Multiple Sclerosis.

The only thing that upsets me more than being presented with evidence that MS doesn’t stop you from doing amazing physical things (for many of us, it does!), is when people send me links talking about people who have “cured” their MS.

None of them have.

Dr. Wahls, for example, has done an amazing job of regaining ability in her body that she had previously lost due to MS, by eating a modified paleo diet. News sources around the world touted her discoveries as a “cure” for MS — but Dr. Wahls will tell you herself that she still has the disease, and that she is managing the symptoms through diet. She still deals with some symptoms from MS, but she’s much better than she was prior to starting her diet regime.

Then there’s CCSVI (which was proven ineffective), stem-cell recipients, bone marrow transplants, and recently, T-cell reprogramming.

Not one of these “cures” is a real cure, but, they are steps towards one.

Why do I get upset when people excitedly tell me about “cures?”  Because every one of those articles about potential medical therapies carries with it a  mixture of false hope and more shaming. These articles contain the implied suggestion, “If the news says this is a cure, you should try it – and if you don’t, then you’re not doing everything you can to fight the disease.”

I’m proud of how I’m doing.

I have gotten accustomed to a life with seizures, thinking problems, sexual difficulties, muscle spasms, fatigue, dizziness, bladder problems, and abnormal sensations — all occurring during the last 6 years while I’ve been taking medicine to slow progression of the disease.

So, no – I don’t think I’m going to be running 366 marathons anytime soon. I sure as shit am not climbing Mt. Everest, and I have no designs on trying to become a professional athlete or political figurehead.  I’m facing the challenges presented to me by my body and am not looking to increase the difficulty of my life.

The fact that, since the constant seizures abated in January, I have consistently gotten myself to the gym 3-4 days a week proves to me that I am not a quitter.

The fact that, for 6 years, despite being initially needle-phobic, I gave myself nightly injections to fight the disease, lets me know that I’m willing to face my fears and do whatever is necessary to maintain as good a level of health as I can.

The fact that I am, once again, following a modified paleo diet because science confirms that it makes a positive difference in the health of people with MS, shows me that I am not lazy or letting the disease “win.”

The fact that I’m willing to try new drugs when they come out on the market, like Tecfidera, despite the chance of horrible side effects, lets me know that I have not lost hope.

Despite multiple sclerosis, I do my best to live a full life.  And to me, that’s all any of us can ask of ourselves.

Bad Medicine

Posted in Multiple Sclerosis by

Shame on you, Biogen Idec, for marketing Tecfidera as a safe product.

Shame on you, FDA, for approving it despite it’s horrific side effects.

Medicine is supposed to treat or prevent disease, not cause such painful and severe side effects that enduring the course of medication is worse than dealing with the disease itself.

For the past 5 days, I have been made intolerably miserable by Tecfidera. I have dealt with stomach pain so prolonged and severe that I doubled over in bed and wept like a baby. I have endured muscle and joint pain that I thought was reserved for old people with arthritis who refused to take any kind of medication.  I have had the Hershey squirts so bad that I thought that drinking water was a dangerous proposition.

Throughout the 5 days, I repeatedly considered going to the hospital, but was reminded that there was nothing that could be done for me there. Then, last night, despite taking the medication at the appropriate time, with a full dinner that met the specifications for “what to eat” that a Biogen Idec nurse gave me, I vomited so violently that I lost bladder control and peed all over myself.

For me, that was the final straw.

WTF is wrong with MS drug manufacturers?

Multiple Sclerosis is a very scary disease to have. Just thinking about the fact that your immune system is constantly attacking your nervous system is terrible. Dealing with all of the actual fall-out from the disease, like losing the ability to do activities that you enjoyed in the past or hold down a job, is more difficult. You become accustomed to parts of your body going numb, becoming tingly, feeling like they are on fire…  You get used to wondering what parts of your body (or your mind) are not going to work properly on any given day.

But despite living with the inability to plan and the constant “new normals” (read: increased disability) of our lives, we are so desirous to slow down progression of the disease that we continue taking medicines that have such severe side effects that it makes you wonder, “Is MS, left unchecked, really as bad as these side effects?”

Medicine should not make you worse off than if you didn’t take it.

In every instance of disease modifying medication on the market today, we MS sufferers are told to suck it up and endure more terrible things (like painful injection site reactions, flu-like symptoms (all CRAB drugs), medicine-caused depression and anxiety (interferon-beta),  flushing, redness, rashes, severe abdominal pain, vomiting, and diarrhea (Tecfidera) to name a few side effects from disease modifying drugs) because it is suggested that if we do not, surely the progression of our MS will increase, and we will become more disabled.

MS patients are forced to make the choice between suffering because of the medicine or suffering more from our disease. It’s an unfair choice to have to make, at best. The truth is, it’s an impossible choice to make because no one knows what causes MS, and no one knows what actually slows it.

Are there drugs that make it seem like you are getting fewer lesions in your brain and spinal cord than you would have if you did nothing? Sure. But every study done on every MS drug out there compares MS patients who don’t take the drug (the control group) to those that do.  You have to ask yourself, after you’ve become knowledgeable about this disease, is that even good science?

Every neurologist will tell you that MS is different in every patient.  These medicines affect different patients in different ways. Some DMDs work for some people and not for others. Comparing the progression in MRIs of people who take a medication vs. those who do not only shows how effective the drug was on those particular people. And aside from showing speed of formation of lesions in the brain, the drugs don’t compare level of disability on and off the drug. So how can we even trust the science behind these medications?

Studies haven’t shown on one person specifically that any of the drugs stops, slows, or improves MS as opposed to how they would be with no medication. They always compare 2 people – 2 different cases of MS. You’re forced, as a patient, into this specious reasoning: “Oh, so the people who took this drug overall had fewer lesions and relapses over a period of time than the people who didn’t take it. That must mean if I take the drug, I’ll have fewer new lesions and relapses.”  It doesn’t take into account that every case of MS is different, and that some of the folks with more lesions without the medicine may have had that number even if they took the medication.

The truth is that NO ONE KNOWS HOW QUICKLY YOUR MS WILL PROGRESS BECAUSE THEY DON’T KNOW WHY IT’S HAPPENING IN THE FIRST PLACE. Taking any of the drugs may or may not help and there’s no way to know for sure.

What you can be sure of is that you will suffer at least some of the negative side effects of whatever DMD you’re on. You can be sure that when you get your MRIs every year, there will be new activity, regardless of whether or not you’re on a DMD, because NONE OF THE DRUGS STOP MS. The best that any of them do is slow it down, while fucking you up in other ways.

There is no 1-to-1 connection between number of lesions and amount of disability. No one knows what slows MS disability progression. Interferon-beta (used in Avonex, Etaxia, Rebif, and Betaseron) can prove that in many patients, it slows down the rate at which they end up with lesions in their brain, but interferon-beta has also been proven to not slow disability! So what’s the point in taking any of those drugs? THERE IS NONE. But people still people take them! Neurologists still suggest them! Of all the drugs out there, only Copaxone has shown that it both slows progression of the disease and onset of disability.

And my doctor said Copaxone wasn’t working for me because there were new and active lesions in my MRIs last year. That’s what prompted my move to Tecfidera.  I was feeling well on Copaxone, regardless of the injection site reactions and the craters of desiccated fat on several parts of my body.  I have been on antidepressants to deal with the increased anxiety from it for years. The medicine didn’t make me feel so bad that I couldn’t function like Tecfidera has.

I actually would rather return to giving myself nightly injections, like I did for the last 6 years, than deal with the side effects of this pill.

It sounds nuts, because the doc says it’s not working… but I wonder, since it’s supposed to slow progression and slow disability, if I wouldn’t have ended up with those lesions anyway if I weren’t taking it. It *is* possible (even likely) that disease progression will continue while on the medication.  How do we know it’s not working?

Making informed medical decisions about course of treatment for MS is the worst.

Nothing Can Be Done

Posted in Multiple Sclerosis by

Well, the past few days have been interesting. And very painful.

On Sunday (Day 11 of Tecfidera), at around 3:30 p.m., after having indulged in a delicious family meal, celebrating my father-in-law’s birthday, my upper abdomen started hurting. I had read all the prescribing information on Tecfidera and figured that the pain would subside shortly. I was wrong. Very wrong.

Fast forward to that night, at around 11 p.m., after hurting for about 8 hours when I was calling the 24-hour Active Nurses line to find any form of relief. The words, “I’m sorry, ma’am, but it’s a known side effect and nothing can be done,” broke my heart.

I read on one of the Tecfidera message boards that someone had been in so much pain that they called an ambulance, and the EMT just gave them 50 mg of Benedryl and took them to the hospital, where they were told that nothing could be done.

So, I asked Adam to pick me up some Benedryl and I took 50 mg.  25 mg usually knocks me unconscious, so I figured 50 would do the trick. It didn’t. I didn’t sleep at all Sunday night/Monday morning.  I couldn’t! I was in too much pain, and I told Adam when he woke up at 5 a.m. for work, “I think I need to go to the hospital.”  He chose to stay home with me rather than go to work, and I am more thankful for that than I can possibly express.

At 9 a.m., I looked at my morning dose of Tecfidera and said that I wasn’t sure that I could take it.  I was ready to quit the drug entirely and go back to nightly injections of Copaxone, even though the MRIs were showing that Copaxone wasn’t helping me. Though I’d suffered with injection site reactions that burned and stung like a bee sting, every night for 6 years, I had never been in so much pain that it made me double over in bed, crying, and clutching my stomach. It seemed like the only reasonable option.

I did as the nurse advised and called my neurologist first thing in the morning.  He too echoed the sentiment, “Nothing can be done.” He had me skip the Monday evening dose to let my stomach heal. He said if this continues, I’ll have to go to a lower, less effective dose.  My thought was, “If it’s not effective, what’s the point in taking it?”

It wasn’t until Tuesday morning that I started to feel a like a human being again. Tuesday, I made sure to eat a large breakfast and a large dinner with my medication, and I woke up today feeling okay.

However, now it’s 3 p.m. and my stomach is hurting just as badly as it was at the same time on Sunday. I want to crawl into a ball and die.

All I can think is that I’m going to be in pain like this until I stop taking the medication, despite knowing that the prescribing information and the nurse both said that abdominal pain tends to stop after the first month… but who can endure a month of this?

My irrational brain says that all MS drugs are bad for you: they all have side effects that are equal to or worse than enduring the indignities caused by MS, and the only knowledge you have of whether or not they slow down progression is based on other people’s MRIs, not your own. Sure, you get an MRI every year or so, but every time you get one, there are more lesions, so you just hope that the drug is making it a smaller number than it would have been.

People with MS continue to develop lesions with ALL of the MS drugs on the market. We still have relapses (though the number of them is supposed to be less) on ALL of the MS drugs on the market.  People on every kind of MS medication continue to become more and more disabled. Hell, the interferon-beta drugs (Avonex, Etaxia, Rebif, and Betaseron) have been proven not to slow the onset of disability, despite causing a plethora of awful side effects and costing around $50,000 a year. NOT ONE MS MEDICATION ACTUALLY STOPS MS.

As I sit here with an upper abdomen that is very sore and painful, all I can think about is how today is yet another day that I can’t go work out. Another day that I am losing to MS because of the medicine I’m choosing to poison myself with.

But what’s the alternative?  Not taking a disease modifying drug and leaving multiple sclerosis the ability to attack your body faster and in more places?  This is the dilemma that all patients with MS suffer with: Is it better to cause myself known physical harm in hopes that it will be less painful/harmful than what MS would do to me if I weren’t taking medicine?

Right now, my medication is causing me more disability than multiple sclerosis. I am sore all over. My stomach feels like The Incredible Hulk punched me directly in the stomach, right below my rib cage. I am flooded with irrational suicidal thoughts that I  have to fight because I just want to make the pain end. And writing this is taking a monumental amount of effort.

But what can be done? I’m seriously asking.

Rae vs. the Relapse: Round 1! FIGHT!

Posted in Just Life., Multiple Sclerosis by

Wow, I can’t believe it’s been so long since my last post.  Life has been happening… in that sort of busy everything-comes-at-once sort of way.

Relapse-a-rama

Right now, and for the last week or so, I’ve been dealing with an exacerbation (or “relapse”) of multiple sclerosis.  My back on the left side has been shifting between numb, tingly, and burning – and for the first part of the relapse, the same was true of the left side of my chest.  (Nothing is as strange feeling to me as a completely numb boob that I can feel with my hand but not feel on my chest.) Add to the mix a few seizures (which were totally unexpected since I’ve been mostly seizure free this year) and some crushing fatigue and you’ve got a recipe for “Me on a Medrol dose pack.”

One thing that is different about having a relapse here in Chicago from when I had them in Los Angeles, is that my current MS neurologist (Dr. J) has never ordered Solumedrol-IV drips. (I’m using the term “MS Neurologist” to differentiate him from the neurologist that I see for my seizures, who works at the same hospital.) In LA, I was getting Solumedrol drips fairly regularly – probably once every 6 months or so.  In fact, this is only the second relapse that I’ve had since moving to the Windy City 2 years ago, and both times, they were handled with oral meds.  This is not a complaint. I’m not a huge fan of the 3-5 days of drips, but they do get the job done thoroughly.

Dance of the Meds

When I spoke with Dr. J on Friday, he let me in on some news about the progression of my MS that I really didn’t like.  He was comparing the MRIs from beginning of March last year to ones taken at the end of July of last year… only a 5 month window for change… but he said that there were significant changes.  Apparently, many of my lesions were/are growing in size and number, suggesting that the Copaxone that I inject nightly either isn’t doing its job to slow progression, or isn’t doing it well enough for him to want me to stay on it. He suggested that we talk about my getting on Tecfidera (BG-12) at our next appointment (which is June 3.).

So why is that problematic?  Because you can’t get pregnant on Tecfidera. Copaxone is the only disease modifying drug for MS that is tested safe for becoming pregnant… and I have been working to get off all drugs that would negatively affect a pregnancy for over a year now.  I am, for the first time in 6 years, not on anything that could badly affect a baby.  No Cymbalta, no Abilify, no Topamax.  The only drug that I take now that could have any affect on the pregnancy is Nortriptyline (which I take both to deal with MS pain and depression), and it’s been considered one of the safer antidepressants to use during pregnancy for years.  I am, however, considering dropping it too if we make the choice to go ahead and start our family.

It’s All About Timing

I am strongly considering getting on Tecfidera right now anyway, and just stopping taking it when we’re ready to conceive. Adam and I have so many mutual goals right now that are at odds with having a baby right now: (1) achieving optimal body weight, (We’ve been hitting the gym 4-5 times a week for months now.) (2) buying a house, and (3) finally going on a vacation somewhere together.

I know that it would be better for the pregnancy if I were not overweight. Right now, I’m 70 pounds heavier than I want to be, but I’m on course to be my optimal weight in about a year.  A year is also about how much time we need to save up the downpayment for a house. Right now, we live in a 2 bedroom apartment. Could we make room for a baby? Sure… but it’s not ideal. And then there’s the very real fact that kids are like money vacuums. The likelihood of Adam and I ever getting to go to a resort together when we have an infant is ridiculously low.

So, it seems, from my perspective at least, like the smart move would be to switch to Tecfidera for at least a year, and put off becoming a mother until our situation is more ideal. At least I’m not baby-crazy like I was this time last year.

I’m also hoping that The Assistance Fund will work with me to pay for Tecfidera if I switch from Copaxone. Both drugs cost more than $50,000 a year, so the change shouldn’t affect how much they’re paying, if they’re willing to continue to help me out.

Right Now

As for how I am today: I can feel my chest, my back is sort of “buzzing” or fuzzy feeling, and I’m not crazy fatigued. I haven’t had a seizure in the last 3 days. This is good for not being done with the dose pack yet. I’m on my second to last day.

If I’m lucky, I’ll get most of the laundry and dishes done today before therapy.  Hope you’re all doing well.

Good Things All Around!

Posted in Just Life., Multiple Sclerosis by

The Assistance Fund Came Through For Me! 🙂

I’m so super happy!  I got a call this morning, and the Assistance Fund got more money as of this morning. So, I’m going to be able to order myself some Copaxone this afternoon and will be back on medication very soon!  This is a huge weight off my (and my family’s) shoulders, and I have to say, I have never been so excited about being able to give myself nightly injections. 🙂

I had a very happy Valentine’s Day!

Yesterday was a lot of fun. Adam and I tried a new-to-us restaurant that’s near where we live, called Ruk Sushi and Thai.  Neither of us was particularly pleased with our meal, but I’m always happy when we try a new place. I got sushi, which I tend to save for special occasions, since it’s so pricey — and their maki rolls were surprisingly tiny! I ordered 2 different types of rolls, thinking that would be plenty, but I was still really hungry afterward. Adam’s red chicken curry was almost nothing but bamboo shoots… to the point that he started picking them out because he couldn’t handle eating them anymore… so that left us in a situation that demanded that we continue to eat. We made the best of it by having ice cream! And that’s a treat that is rare for this household. 🙂 Chocolate chip cookie dough, oh, how I love thee… ❤

Adam also got me some beautiful flowers: stargazer lillies and some purple mums. It’s funny to me to see them being their gorgeous selves inside a Folgers coffee can.  One of these days, I’ll go to Goodwill, spend a whole dollar, and get a proper vase. 🙂

Tonight, we get back to the gym!

Yes, I am actually excited about this. For several months, Adam and I were going to the gym at least 3 times a week, regularly, but for the last 2-3 weeks, we haven’t gone, because we’ve been alternating on who’s sick.  And you can’t go to the gym when you’re coughing up a lung. Well, you can. It’s just really not polite to spread your germs that way.  Adam and I have both been missing the stress-relief and mood lift that comes with working out, not to mention, our bodies need it.

It’s sunny outside AND it’s a 3-day weekend, people!

As if things needed to be better, the weather is fantastic today, and it’s a Friday before a 3-day weekend.  I mean, you really can’t ask for better than that.  You just can’t.

This weekend, Adam and I are gonna work on that sewing project that we started about 3 weeks ago (and by “that sewing project,” I mean learning how to use the sewing machine and then making pillows using it) — and we have a 60% off fabric coupon from JoAnn Fabrics because it’s President’s Day weekend.

Add to that the fact that yesterday, I totally cleaned the house from top to bottom, so there’s not much for me to do today, and you’ve got a recipe for a completely happy Rae.

Life is good today, folks. Life is damn good.

Life: It has it’s ups and downs.

Posted in Just Life., Multiple Sclerosis, Uncategorized by

DOWN: I still have no MS medicine.

The monthly copayment for my Copaxone is $1,790.53. Needless to say, I cannot afford that, so I’m looking for help.

Copayment Assistance Programs for Copaxone

The Assistance Fund – They’re out of funds, but say to check back online daily.

Patient Access Network – They’re also out of funds, but say to check back online daily.

Chronic Disease Fund – must call daily to check if they have funds. I’ve already been approved. They just have no money…today, anyway.

It has been tough asking for help repeatedly and being turned down, but I’m not giving up. My neurological safety is at stake!

UP: I had a great second audition tonight.

The second audition with the band went really well tonight. I had a fun time making music with them and am looking forward to making more music in the future — especially since they are interested in hearing some of my songwriting.

I am looking forward to making music a bigger part of my everyday life. It is clearly key to my happiness.

I am also stoked that the members of the band and I have more in common than just music.  I found out tonight that most of them are attorneys, which tickles me, since I was so close to becoming one myself.

Overall, things are hopeful and good.

Oh, hello.

Posted in Just Life., Multiple Sclerosis by

It’s been a few days since I’ve last updated my blog, so I figure I ought to do that.

I am sick.

I have a virus of some type. I’m sneezing a lot, having to blow my nose, have aches all over, and want to sleep constantly. Yesterday, I woke up at 10:30 a.m., was up til noon, then slept til 2:30 p.m.. Today, I slept til 11:30 am. If Adam hadn’t started pinging me with Words With Friends moves, I probably would have kept sleeping. To give you some perspective, bedtime is 11. That’s a lot of zzz’s.

The thing is this: I have my second audition with the band tomorrow night.  I don’t know, at this point, if I should email them and see about rescheduling. I don’t know if I should hold out hope that I’ll be better by then, or if it’s a pipe dream.  I’m better today than I was yesterday, and I’m sleeping loads, so I think it’s conceivable that I could be better…  I feel like I’m gambling right now.

Whenever I get sick, my MS symptoms kick up… so I’m dealing with a lot of fatigue, cognitive fog, pins and needles in my feet, and neuropathic pain in my legs and back. It doesn’t make for the best mood.

No therapy for me this week.

So my awesome therapist, K, is sick this week too. She woke me up at 8 a.m. to cancel tonight’s appointment. I think we have the same thing, only she has a high fever. That means that it’s up to me to celebrate the accomplishments that I’ve made this week on my own. I get to pat myself on the back for basically silencing the voice that’s been telling me to kill myself.

I’m hesitant to be too proud of myself.  The voice has only been gone for a few days, but it’s been good to not have to fight it. I like not thinking awful things about myself.  I like not giving my self-doubt the power to run amok. I like remembering that aside from being in control of my actions, I can be in control of what I do with my thoughts.  I may not be able to be in control of what thoughts occur, but I can be in control of what I do with them.

Sitting in the Dark is a Bad Idea.

I know better than to be doing what I’m doing right now. I’m sitting in a completely dark room, with only the light from a single window to illuminate the room. It’s depressing as hell, since, like most days in winter, it’s gloomy and grey outside.

I’m upset as I can be right now, after finding out that the Chronic Disease Fund accepted my application but is out of funds, and that the Assistance Fund never even received my application but still is out of funds – meaning that I have no copay assistance and still cannot afford the nearly $600 copay for 1 month’s worth of my multiple sclerosis medication. Copaxone is too damned expensive.  So, I have to reapply with the Assistance Fund, and then begin the fun-fest that is calling both the Chronic Disease fund and the Assistance Fund on a daily basis to check for funding.  There’s nothing quite like a daily dose of begging and rejection to remind you of your worthlessness – financially speaking, of course.

Fuck this noise, I’m going back to bed.

Seriously. Today can eat a big old bag of dicks. I don’t feel like learning the songs I need to learn for the audition. I don’t care about anything. I don’t want to do the laundry or the dishes or take out the trash. I kind of hate everything because I’m hurting all over. I can’t even be bothered to make myself food. I had a protein shake for breakfast and called it art.  I think the fact that I’m able to say, “Fuck it, I’m going back to bed.” as opposed to, “I want to die.” is progress. At least right now, I don’t think any of this shit is my fault.

What To Eat and Not To Eat If You Have MS

Posted in Multiple Sclerosis, Science by

Okay, so I’ve quit the paleo diet for the time being because it’s a hairy pain in the butt from time to time to constantly be cooking all of your own food, and because part of me worries that it’s a fad.

That doesn’t mean that it’s a wrong diet to be on. It just means that for right now, I’m on hiatus from it.

I spent more than an hour on the phone this morning with a nurse from Shared Solutions, the care team from Copaxone, discussing multiple sclerosis, and how to treat it.

MS is a disease of inflammation, and so, if we’re going to do our part to eat well, we should eat foods that are anti-inflammatory.

You can best help your body eliminate inflammation by reducing stress, removing sugar and processed foods from your diet, and by getting more sunshine! Even if you’re not going for a walk, and you’re sitting on a computer, try to get it outside!

Foods That Help Eliminate Inflammation

  1. Vegetables in the Broccoli Family: Broccoli, Cauliflower, & Broccolini
  2. Oils high in Omega 3, such as flaxseed oil, canola oil, or hemp. Olive oil is ok too.
  3. Fish high in Omega 3s – Salmon, Sardines, Herring, and Black Cod
  4. Spinach has carotenoids, one kind of inflammation-reducing antioxidant and it also contains vitamin E.
  5. Onions contain quercetin, a potent antioxidant that can help your body fight inflammation.
  6. Garlic contains sulfur compounds that stimulate your immune system to fight disease.
  7. Tart cherries! They’ve got better anti-inflammatory powers than aspirin, believe it or not!
  8. Pineapple contains bromelain, an antioxidant that boosts your immunity.
  9. Soaked Walnuts. It’s important to soak them to remove the enzyme inhibitor.
  10. Ginger, Tumeric, Curry, Oregano, Rosemary, and Green Tea contain bioflavonoids and polyphenols that reduce inflammation and limit free radical production.”

Foods to Avoid

  1. Sugar – It causes inflammation. Nuff said.
  2. Corn, Safflower, Sunflower, Peanut and Soybean Oils that are high in Omega 6
  3. Trans Fats
  4. Dairy Products: Why? Because it has cassien, which is a common allergen that causes inflammation.
  5. Feedlot-Raised Meat: because the meat was fed inflammatory food, like soybeans and corn, which means when we eat the meat, we’re also eating the inflammatory agents of the legumes and grains that are in the meat.
  6. Red Meat & Processed Meat: Why? Researchers at the University of California San Diego School of Medicine found that red meat contains a molecule that humans don’t naturally produce called Neu5Gc. After ingesting this compound, the body develops anti-Neu5Gc antibodies – an immune response that may trigger chronic inflammatory response. And low-grade simmering inflammation that won’t go away has been linked to cancer and heart disease. And multiple sclerosis. Much as my husband will hate this, it means no beef, lamb or pork, including hams, sausages and salami.
  7. Booze. I don’t think I need to qualify this one.
  8. Refined Grains. They are devoid of fiber and vitamin B compared to unpolished and unrefined grains that still have the bran, germ and the aleurone layer intact. This makes refined grains as good as refined sugars, which are practically empty calories. UNREFINED GRAINS ARE OKAY! As long as you are not allergic or intolerant to gluten, go for minimally processed grains. Check labels and go for things made with 100% whole grains.
  9. Artificial food additives/Exitotoxins: NO MSG, aspartame, or the like.
  10. Nightshade vegetables like tomatoes and potatoes, if you’re having real problems.

As I put this together, I can’t help but notice that there are many similarities to the Paleo Diet, but there are a few differences that are obvious, like the inclusion of whole grains if you do not have gluten intolerance, the complete exclusion of all red meat, and the exclusion of tomatoes and potatoes.

Since I quit the paleo diet, I have broken out (yay acne!) and gained weight. So it’s obvious to me that I have unnecessary inflammation going on. I think if I tried to follow these rules, I would probably feel better, lose weight, and be happier.

Sources
http://bodyecology.com/articles/top_ten_foods_that_prevent_inflammation.php
http://nutrition.about.com/od/dietsformedicaldisorders/a/antiinflamfood.htm
http://www.webmd.com/diet/guide/anti-inflammatory-diet-road-to-good-health?page=3
http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet
http://www.sheknows.com/health-and-wellness/articles/803649/the-anti-inflammatory-diet-eating-foods-to-heal-your-body
http://theconsciouslife.com/top-10-inflammatory-foods-to-avoid.htm

Threatening to switch meds just to get help.

Posted in Just Life., Multiple Sclerosis by

4 days and no posts.

It’s shameful, really. I could at least translate a chapter of the Tao, one might think… but life hasn’t given itself to that, or the posts would be there.

For those of you who are clucking your teeth, know that I have self-berated.
For those of you who are giggling, know that I am smirking as I write this.

It’s hard to believe that I just got off the phone with Shared Solutions, letting them know that it’s been more than a month that I have been without Copaxone on their account and that I am suffering through a relapse – and that if they’re not gonna help me, I’m gonna have to switch meds. Rebif is givin a year free right now, though I don’t know how wise it is to go that route. I am done with my Medrol dose pack, but I am still dealing with numb tinglys off and on throughout my side and top of my chest and my left pinky and ring fingers. It’s weird typing with them, but it can be done — mostly because I know to will my way through it. I’m sleepy all the time. Even with ZipFizz. I don’t care that it’s not Paleo. I’m tired. Very tired.

Right now, I’m just trying to keep going. I don’t think sleeping all day is the answer, much as I wish it was. Instead, I think it involves a smoothie, picking out some recipes to try this week, and convincing Adam to make a trip with me to Trader Joe’s to pick up some bananas and salsa (not to be used together!) and Whole Foods for whatever other ingredients we need.

In the battle of Rae vs. the totally lame, I cannot let lame and boring win!!! Mostly because that means I’m bored. And I can’t have that, now, can I?

Hope all you readers are rockin it out in the free world… or some other awesomely awkward quote that would befit a reading by Paul Rudd. Peace.