Medical Marijuana Is Coming To IL.

So, a friend of mine has started to blog her journey through the wonderful world of medical marijuana, and I have to say, quite honestly, that I am more than a little jealous of her ability to access premade edibles, whatever strain of cannabis she is interested in, and the safety of doing all of that in CA, where you can just walk into a respectable dispensary instead of finding out if a friend of a friend of a friend has a hookup.

Here in IL, the House and the Senate already passed “The Compassionate Use of Medical Cannabis Pilot Program Act” months ago… (like mid-May!) and we’ve all been impatiently awaiting Governor Quinn’s signature.  Our wait is about to be over.

Under Illinois law (Article IV of the Illinois Constitution, Section 9), if the Governor fails to sign or veto a bill within 60 days of receiving it from the legislature, the bill automatically becomes law.  Governor Quinn received the bill on June 5, and August 4th is only 5 days away.

CA is still way better than IL… at least when it comes to weed law.

Now, there are some serious differences between the laws in CA and the laws that will exist in IL if this bill goes into effect next week… differences that I think make CA’s program far better for patients.

1.) In CA, patients are allowed to grow their own plants, the limit being 6 mature or 12 immature plants.  HB1 would not permit patients or caregivers in IL to cultivate cannabis.  In fact, cultivation would only be allowed at 22 specific, strictly regulated cultivation centers (1 per state police district).   While I can appreciate that our IL lawmakers want to make sure that labeling, safety, security, and record keeping are good, it seems very “pro-business” to only allow patients to acquire their medical marijuana from state-regulated dispensing organizations, which would purchase cannabis from state-regulated cultivation centers.

2.) In CA, there is no waiting period between receiving a recommendation for cannabis and your ability to go to a dispensary to purchase some. In fact, there are “weed doctors” all over the place. You go to a doctor whose whole business is giving referrals, pay your $60-80 for your referral (assuming you have a legitimate condition), and can go straight to a licensed dispensary afterward.

According to HB1, patients in IL will need to get a recommendation from the doctor who handles the condition that necessitates the use of cannabis (meaning that I’m going to have to get my recommendation from my MS neurologist), then send a copy of the written certification to the Illinois Department of Public Health (DPH), and DPH would issue an ID card after verifying the information. (No idea how long it’ll take to get that bad boy in the mail.)

3.) In CA, no state-issued ID card is necessary. All that is needed is a physician’s statement saying that marijuana is “approved” or “recommended.”  In IL, patients must have a state-issued ID, or they will not be able to avail themselves of the protections of HB1 or able to purchase marijuana from a dispensary.

4.) In CA, epilepsy and seizure disorder patients are allowed access to medical cannabis. Cannabis is sometimes very helpful for folks with epilepsy and seizure disorder, but in IL, you must have one of the following conditions, or you’re not considered eligible for patient access: cancer, glaucoma, HIV/AIDS, hepatitis C, amyotrophic lateral sclerosis (ALS), Crohn’s disease, agitation of Alzheimer’s disease, cachexia/wasting syndrome, muscular dystrophy, severe fibromyalgia, spinal cord disease, Tarlov cysts, hydromyelia, syringomyelia, spinal cord injury, traumatic brain injury and post-concussion syndrome, multiple sclerosis, Arnold Chiari malformation, Spinocerebellar Ataxia (SCA), Parkinson’s disease, Tourette’s syndrome, Myoclonus, Dystonia, Reflex Sympathetic Dystrophy (RSD), Causalgia, CRPS, Neurofibromatosis, Chronic Inflammatory Demyelinating Polyneuropathy, Sjogren’s syndrome, Lupus, Interstitial Cystitis, Myasthenia Gravis, Hydrocephalus, nail patella syndrome, or residual limb pain.

5.) In CA, minor patients are treated just like adults if they have parental consent.  In IL, even if your child has terminal cancer, they’re not allowed to be a part of the medical cannabis program.  There is absolutely no reason, when the program is this stringently regulated by the state, that the arbitrary age of 18 should have anything to do with the use of medication to ease suffering.

6.) In CA, you can go to different dispensaries to decide which one you want to give your business to. In IL, a patient must designate only one dispensing organization where he or she would be able to receive medical cannabis.

7.) In CA, you can always use medical cannabis in the privacy of your home. In IL, it’s specifically stated that landlords can prohibit smoking on the premises of leased property… so even though you can’t use cannabis at a dispensing organization, in any public place, or in the view of minors, you also might not be able to use it at home either.

If you can’t use it in public or in private, where is it safe?

I guess there are always edibles.

Baby-steps Forward

The Compassionate Use of Medical Cannabis Pilot Program Act only sets up a 4-year pilot program here in IL.  This means that unpalatable features of the law (like “no use for epilepsy or for minors with terminal diseases” – or the inability to shop for a dispensary) may be changed in a relatively short amount of time.

As someone with multiple sclerosis who was able to treat her muscle spasticity and pain using specific strains of cannabis in CA (prior to moving to IL), this is a huge leap forward.  I am looking very forward to being able to procure this medication in a lawful way and to get exactly the kind of cannabis that I need. I can honestly say that the ability to make knowledgeable decisions about what “flavor” of cannabis I’m using makes a huge difference in the effectiveness of use.

I am also looking forward to once again have the ability to purchase edibles and to look into new vaporizer technology (like marijuana e-cigs).

But what if Quinn vetoes at the last minute?

If Governor Quinn decides to veto the bill right at the last minute (which I seriously doubt will happen), it might end up being law anyway.

IL Constitution, Article IV, Section 9(c) provides: If within 15 calendar days after such entry that house by a record vote of three-fifths of the members elected passes the bill, it shall be delivered immediately to the second house. If within 15 calendar days after such delivery the second house by a record vote of three-fifths of the members elected passes the bill, it shall become law.

In English (for those who don’t speak legalese): If Governor Quinn vetoes, the bill gets sent back to the House (who originally voted 61-57) for a second vote which must occur within 15 days. If, in this second vote, at least 71 representatives (only 10 more!) support the bill, it will move to the Senate (which originally voted 35-21). If, in the second Senate vote (which must occur within 15 days of the House vote), at least 33 representatives (2 fewer!) support the bill, it will be signed into law, regardless of the governor’s objections.

It doesn’t appear, however, that Governor Quinn actually has any objections. From everything I’ve read, he supports the measure.  The last thing he said on record was, “It’s an important bill. I’m going to look at the bill from top to bottom, as we do every bill.  But I’m very open minded on this.”

By choosing to let the bill become a law without his signature, Governor Quinn is making an astute political move — basically giving support to the measure while also taking the position that if things fuck up, it wasn’t his fault, since he had no opinion on the matter.

Smoke ’em if you got ’em!

Regardless of the many differences in law between IL and many of the other states that have compassionate use in place, having a program at all is a huge win for patients in the state.  It will help ease the suffering of thousands of IL residents.  (And probably create some really interesting food and art too.)

I am confident that IL will see a lot of benefit from having this program in place, both financially (from the 7% tax they are levying on cannabis) and criminally, as it will take business away from the black market.

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In Another Life…

There are times when I reminisce about my life and feel like it barely belongs to me. Like “Past Rachael” and “Present Rachael” come from 2 completely different places, are 2 completely different people, and the resemblance to one another is so faint that people wouldn’t even realize we were related to one another, let alone the same person.

This morning is one of those times.

Today, I logged on to Facebook and saw photos of the wedding of someone who I used to call my best friend. She was the best roommate I’ve had in my life (next to Adam, of course), a bridesmaid in my first wedding, and someone whom I deeply respect and admire. And I found out that she got married, not by an announcement in the mail or an email from her, but by seeing pictures of her wedding posted on Facebook by mutual friends.

It hit me at that moment that she probably doesn’t even consider me a friend anymore. We barely know each other now.

“Rachael From Way Back When” rocked. Literally.

When I think about who I was when I was close to this person, I get almost mournful… not just because I miss the friendship (I do), but because I miss who I was and how I thought about myself back then.

I was at Berklee College of Music, had just switched my principal instrument from percussion to voice, and had declared a major in music business. I was songwriting with a very talented partner (whose friendship I kind of fucked up while going through therapy to treat PTSD), and still believed that I could change the world through music. I was going to be a rockstar — I just knew it.  I went to live music shows, worked my ass off in performance labs, and didn’t believe I could make bad choices.

But I could. And I did.

And in the midst of those bad choices, I did some pretty amazing stuff. I started Greek life on campus, bringing a professional co-educational fraternity for people in the creative and performing arts to Berklee and the Pro-Arts Consortium.  I constructed and shopped a $5 million dollar business plan that I thought was going to revolutionize the music industry. (Some of the things in my plan were actually implemented by CDBaby after our 2 year non-disclosure agreement was complete.) And I did a lot of unpaid work in internet radio.

I didn’t believe in failure. Or rather, I wouldn’t accept failure, in any circumstance of my life – even when there were times where I should have walked away from situations that were terribly negative for me.

If that version of “Past Rachael” were to hear about the life I’m currently living, she would have freaked the fuck out. And not in a positive way.

I remember, when I was first diagnosed with seizure disorder and was having time-travel with my cognition, waking up, thinking I was 18 again and being in complete disbelief that (1) I had graduated from law school  (I always thought that it was too much hard work) and (2) that I was in the process of studying for the bar exam.  My thought was always, “But I was going to be a musician. I sold out.”

That Time When I Sold Out…

I don’t remember exactly when I decided that making money was more important than making music… but I know I was still in college. I think it was during a film scoring class, when the professor said that a film scoring graduate would be lucky to make $25,000 a year. I declared my major in music business the next day. And the longer I took music business classes, the harder I worked at web and graphic design, on that business plan I talked about, and less on practicing any kind of music.

The future well-being of “my family” (and children I didn’t have) meant more to me than music.

Fast forward to 2005: I was living in Memphis and had just gotten divorced.  Life was beginning to teach me that it is very possible to fail at things that are important to you, despite how much you try to succeed.

At that time, I had a wonderful job with a fantastic, friendly boss and coworkers who I genuinely enjoyed and respected.  I could even afford the mortgage on my own house. But something about getting divorced threw me into a headspace that said, “You’ve got to do better than what you’re doing now. You never want to be dependent on anyone else ever again. Become a professional.”

So, I studied like a madwoman for the LSAT and I went to law school in Los Angeles, thinking I could return to the music industry as an advocate, even though I had said at least a million times before in my life, “I don’t ever want to be a lawyer.” I watched how life as an attorney had drained the happiness from my father during his years as a prosecutor.

But, it became more important to me to be independent and be able to support “my family” (that I didn’t have) than it was to stay at a good job, in a city filled with friends.

“Past Rachael” was tough as nails.

Law school was stressful. That, of course, is a magnificent understatement. I took at least 15 credits per semester, had a workstudy job, and tried to be as active in the student bar association as I could. I took on “extracurricular activities” that made life much more colorful.  I lost 70 pounds. But it never was enough. I was always pushing myself to do more, and was looking, constantly, for “Mr. Right.”

Adam (yes, THE “Mr. Right”) found me, however… 2 weeks after a breakup with Mr. Amazing-but-not-for-me… and for that I am profoundly grateful. It was the first time when Life tried to teach me that things can go very right when you’re not even trying.

I was 2 years into law school when I was diagnosed with multiple sclerosis, and Adam and my mom held my hands as the doctor told me.  Crazy thing: I wasn’t upset by the news or afraid for my future. I just wanted to treat the disease and get on with my life like nothing had changed. I honestly didn’t think anything had changed.  It really hadn’t, yet.

I was absolutely determined to finish law school, despite the symptoms of MS and the seizures that we thought, at the time, were narcolepsy. Again, I had decided that failure was absolutely not an option.  That stubbornness suited me well. I proudly graduated in May of 2008, and started preparing for the bar exam, studying 8-12 hours a day.

On Thursday, July 10, 2008, the question of whether or not I would succeed at becoming an attorney in CA was completely removed from my hands. I had my first grand mal seizure, in the the kitchen of our apartment, while I was doing dishes.  The next day, my mom came in town from Las Vegas and took me to my primary care physician.  I had another seizure in the office, and the next thing I knew I was at a hospital, handwriting my last will and testament as fast as I could before I had another seizure.

I regained consciousness/memory 8 days later. (Though I have heard stories about that first week in the hospital and how I was just constantly spewing legal knowledge the whole time… which is kind of embarrassing.)  The bar exam was 2 weeks away, and I was actually trying to bribe orderlies to give me my notes. The words out of my new epileptologist’s mouth were simple, “Relax, you can take it next time. For now, rest.”

Dark Times

In the months that followed, I faced some of the worst emotional pain of my life, dealing with pseudoseizures caused by PTSD: I was unearthing and reprocessing repressed memories about terrible things that had happened in my life. EMDR let me “time travel” back and sort out some very bad lessons that I had learned about myself and life.

To be honest, the work I did with Ann (my therapist) was invaluable, but we only met once a week. Between sessions, I was an absolute trainwreck of a person. I shook half the day, smoked weed the rest of it, but I was still studying all day long for the bar exam… (and taking it, and failing it. Twice.)

It was during this time that I feel like I actually lost my mind. I was mean to people who didn’t deserve it. (Like the friend I songwrote with at Berklee, for example.) I was unable to control my emotions or my behavior.  I felt so deeply lost and so angry at the world for being unfair and so fucked up in so many ways, and so scared about my future (and what it could mean for my family) that I became suicidal — because I thought my life was over anyway.

In a manner of speaking, my life (at least as I knew it) was over. I couldn’t work because of the near-constant seizures. I couldn’t (and still can’t) drive, so I couldn’t get out of the house to do things.  I couldn’t even walk to the store by myself because of the seizures.  I was miserable, but eventually I got used to the idea that life for me meant sitting on the couch, typing on Facebook, watching TV, and eating.  I had a shower chair, because I couldn’t shower safely standing up, thanks to the seizures.  I couldn’t cook, because wielding sharp knives isn’t safe for someone who is constantly seizing. I felt pathetic and worthless.

As if trying to nail down the lesson that it is very possible to fail at things that are important to you, despite how much you try to succeed, life threw me a crushing blow in 2011. Because I couldn’t pass the bar exam and work and Adam couldn’t find work, our financial situation became so desperate that we had to leave Los Angeles and move in with his brother, Nick, in Romeoville, IL (otherwise known as the middle of nowhere). I had to organize a new care team of doctors, which was complicated and weird. Adam (who had finally gotten to work using the skills he studied in college) had to give up a potential job with the NFL (who waited over 5 months to decide that they wanted him) and return to working for the railroad.

Fortunately, the rail has been good to him. They took him back immediately, and we were able to move from Nick’s house get an apartment of our own in Chicago in 2012. He also got an even better job with the rail shortly after our move.

A fresh set of doctor’s eyes meant that in December of 2012, I had to do a second week-long video-monitored EEG session.  To make sure that everything they got on video EEG was accurate and not caused by the medications I was taking (and because I wanted to have a clean body so Adam and I could start our family), I stopped taking the Cymbalta and Abilify that had been prescribed to me after diagnosis with seizure disorder.

Suddenly, I wasn’t having seizures on and off through the day. And the ones that I did have were simple partial facial ticks and not grand mals. Life was again showing me that things can go very right when you’re not even trying. 

“Present Rachael”

I still am adapting to the idea that life is more than sitting on the couch, typing on FB, watching TV, or eating. I walk to and from the grocery store most days. I exercise at the gym whenever I am able. I apply for jobs that I think I am qualified for…

But I’m not a rockstar. And I’m not an attorney. I am a housewife who struggles with MS. I consider myself a success on the days when I go out to get groceries, do the laundry, and wash the dishes.

I have a hard time getting myself to practice guitar or piano because it’s emotionally difficult to hear yourself not playing as well as you know you used to…  I know that at 32, I am too old and not attractive enough to get signed to a record label – but moreover, I know that I don’t want the pressures of that life. I don’t want to go on the road anymore. I like being home and with my husband.  If I do anything musical anymore, it’s rare and occasional songwriting… and, as always, I never actually write out the notes. So, I guess if I’m being honest with myself, I’m really more of a poet.

When I judge myself based on the high standards I set for myself in the past, I come up exceedingly short.  I am not changing the world. I am not independent. I am not doing anything amazing or memorable or worthy of mention in history textbooks.  And that sometimes makes me sad.

But when I look at where I am today: Able to be physically independent enough to walk to and from the grocery store alone, able to shower without a chair, able to cook, able to workout, and able to say that despite failing the CA bar exam twice, I am not a failure as a person…  I am actually thrilled.

So, sure, I’m nothing like I used to be… but maybe that’s not such a bad thing.

In another life, financial success meant more to me than all the things that brought me happiness.  I’m glad that’s no longer the case. The future well-being of “my family” (and children I still don’t have) means more to me than money.

Despite Multiple Sclerosis…

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 tiredIt 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 recipientsbone 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

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

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.

Homemade Mayonnaise, Pimento Cheese, & Coleslaw

This 4th of July, I got an itch to make some down-home Southern food.  Adam and I don’t have any food-bringing parties today, but we have big plans for tomorrow and Saturday – putt-putt with our beautiful niece and a party with the Biels tomorrow and backyard shenanigans with my girl, Nina, on Saturday. Both the Biels and Nina are looking for folks to bring some good side dishes, and I thought that these two favorites fit the bill.

Being the perfectionist that I am when it comes to food, I researched a double butt-ton of recipes before deciding on how to put together our side dishes. My recipes are amalgams of some of the highest rated recipes on the internet.

Since both pimento cheese and coleslaw require mayonnaise, I figured I’d go for the gusto and create homemade mayo to make the recipes even better. Besides, it doesn’t take long to make homemade mayo, and it tastes so much better than the stuff you buy premade and is better for you, because you choose the oil you use – and I’m not a fan of soybean oil, which is what most commercial mayos are made with.

Rae’s Homemade Mayonnaise

Yields 3 Cups

Ingredients

  • 4 egg yolks
  • ½ c. rice wine vinegar
  • 2 tbsp. dijon mustard
  • 1 tsp. salt
  • 3 c. extra virgin olive oil

Preparation

  1. Get out your food processor and put in the sabatier blade. (That’s the “S” shaped one that spins towards the bottom.)
  2. In the processor bowl, place the egg yolks, rice vinegar, dijon mustard, and salt.
  3. Turn the machine on (not on pulse, but in the “on” position) and as slowly as you can, start to drizzle in the oil, drop by drop until the mixture starts to look like mayonnaise, then a slow steady stream of oil can be added.
  4. Turn off the food processor.
  5. Use a flexible spatula to scoop the mayonnaise out of the bowl and into a container that is suitable for the refrigerator. If properly refrigerated, homemade mayonnaise can be used for 2 weeks.

Rae’s Pimento Cheese pimento cheese

Yields 4 cups

Ingredients

  • 8 oz. Extra Sharp Cheddar Cheese (in block form)
  • 8 oz. 2% Sharp Cheddar Cheese (in block form)
  • 8 oz. Neufchatel cheese (⅓ Less Fat Cream Cheese)
  • ½ c. homemade mayonnaise
  • 8 oz. (2 small jars) of pimentos
  • ¼ tsp. onion powder
  • ¼ tsp. garlic powder
  • ¼ tsp. cayenne pepper
  • ¼ tsp. salt
  • ¼ tsp. pepper

Preparation

  1. Get out your food processor and put on the shredding disc.
  2. Cut your blocks of cheddar cheese in half length-wise.
  3. Turn the food processor to the “on” position and, using the feed-thru hole, put in the long, thick strips of cheddar cheese, in order to shred them.
  4. Turn off the food processor.
  5. Empty the food processor bowl into the large bowl of your stand mixer, making sure to get all the freshly shredded cheese.
  6. In the stand-mixer bowl, add all the remaining ingredients (neufchatel cheese, mayo, pimentos, and seasonings).
  7. Beat at medium speed using the paddle attachment until the contents have homogenized.
  8. Empty the stand-mixer bowl into a container that is appropriate for refrigeration.
  9. Refrigerate for at least 2 hours before serving.

Rae’s Coleslawcoleslaw

Yields 4 cups

Ingredients

  • 1 bag (16 oz.) of bagged coleslaw mix
  •  ⅔ c. homemade mayonnaise
  • 1 tbsp. extra virgin olive oil
  • ⅓ c. white sugar
  • 5 tbsp. rice wine vinegar
  • 4 tsp. onion powder
  • ½ tsp. salt
  • ½ tsp poppy seeds

Preparation

  1. Get out a big ole bowl.
  2. Put all the ingredients in it.
  3. Stir til it’s coleslaw.
  4. Put it in the refrigerator for at least 2 hours and stir before serving

Hope you all enjoy!  Happy Independence Day!