Tag Archives: Tecfidera

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.

Tecfidera & MS Diets

Posted in Multiple Sclerosis, Paleo Diet by
It begins.

It begins.

Tecfidera & Me – The Beginning

Wednesday of last week, I received my shipment of this month’s Tecfidera. I decided to start it that night.

So far, it hasn’t been bad.  I take my pills with food (breakfast and dinner), and I’m already on Prilosec, so I haven’t had any stomach issues.  I have, however, experienced flushing a few times, and it feels more funny/unusual than upsetting. It’s kind of weird to have really hot ears out of nowhere.

I’m still not used to going to sleep without giving myself an injection.  Every night, I climb into bed and feel like I’m forgetting something important. I’m sure I’d get more used to it if I would just throw away the 5 sharps containers I have sitting on the nightstand next to me.

One thing that has already changed in my life, thanks to this drug, is that I am consistently eating breakfast. It still feels weird every day to eat prior to getting on my computer. I don’t know when in my life I actually stopped eating breakfast, but I’m pretty sure it was somewhere around 1994, when I had study hall 1st period during my freshman year of high school, and breakfast was a pack of peanut M&Ms and a Dr. Pepper from the school’s vending machines. (Hey, I was in band, marching with a 30 pound bass drum 6 days a week. My metabolism could somehow handle it then.)

The Wonderful World of Weight-Loss

Unfortunately, my metabolism is nowhere near as good as it was when I was 14. I currently am tracking my calories on MyFitnessPal and am following their suggestion of keeping my caloric intake below 1600 a day. I’m also working out pretty hardcore: doing weightlifting & 20 minutes of cardio 3 times a week and doing 30 minutes of cardio or more on the off days. You would think, after a month of that sort of activity, that I would have seen some movement from the scale.  I mean, I have been working out at least 3 times a week for 3 months now.  But the scale sits at 214 and will not budge for anything.

That’s not to say that I haven’t seen improvement. When I started working out, I was doing most of my weight-lifting exercises on the very lowest weight setting (usually 15 pounds) – and I’m lifting much, much more weight than when I was starting. I also couldn’t do a full 10 minutes on the elliptical trainer on level 1 without having to stop because of fatigue, and now I can rock out 20 minutes on level 10 without thinking about it. As far as measurements go, I’ve lost an inch from my arms, an inch from my waist, 2 inches from my hips, and 2 from my thighs. So, I am seeing improvement… just not on the scale. My relationship with gravity has not changed. And for whatever ridiculous and infuriating reason, that number, staring me in the face, drives me mad. It feels like the scale itself is saying to me, “You’re not trying hard enough. Do something different.”

Diets and MS

Of course, the first thing that comes to mind when thinking about weight loss is changing your diet. I’m already limiting my caloric intake to the amount that science says ought to make a difference. I started thinking maybe I needed to change what foods I am eating. I already limit my sugar and fat intake to 30g and 50g respectively per day. I already cut out processed foods.

Then, I read this article that talks about yet another doctor (Dr. Jelinek)  who has come up with a diet that he proclaims “cures” MS.  It just makes me shake my head and realize that a big part of why I am so frustrated with this situation is that I have tried so many different diets all throughout my life, with none of them making a real, lasting difference in my life.

I started with Weight Watchers when I was 8. That went nowhere. As a teenager, I tried Atkins. I actually almost passed out on the first day because my diet at the time was comprised primarily of bread and I had “nothing to eat.” After the first week, I decided it wasn’t worth it.

Once I got diagnosed with MS, I tried the Swank diet for several months with zero results. I asked my neurologist at that time what she suggested, and she said to eat a low-fat, high-fiber diet as suggested by USDA. Time passed, and I ended up with a seizure disorder. My epileptologist suggested that I try the ketogenic diet to help stop the seizures. But, since my seizures were caused by MS, that didn’t help either, so I went back to a traditional western diet.

Then, in 2010, I tried the paleo diet, in earnest – for several months. I had more energy, less pain from inflammation, and I lost weight without exercising… but it was expensive, took forever to make meals, and family was not supportive of it at all. Every week, when we’d visit Adam’s parents, there was some other reason that one of his family members would say we should quit the diet. We were presented with homemade cookies, bread, or sugar-added fruits or veggies that had been lovingly prepared that we were faced with, and it gets really hard, emotionally, to continually be telling your in-laws, “I don’t want to eat what you’re offering me.”  So, I caved in and went back to eating “like a normal person.”

Dr. Wahls shortly thereafter came forward with science that says eating a paleo diet, including the following “recipe” for daily vegetable intake can vastly improve your MS:  3 cups of cruciferous and dark greens, 3 cups intensely coloured: 1 cup red vegetables / fruit, 1 cup blue black vegetables / fruits, 1 cup yellow/orange vegetable / fruits, and 3 cups others including: 1 cup mushrooms / onion family (for organic sulphur), and seaweed for iodine and trace minerals. (source)

Many of my Facebook friends gave her formula a try, and while it hasn’t hurt any of them, I have yet to hear about any significant improvements.

Now, Dr. Jelinek says that we should be eating only eating only vegetables, fruits, nuts, legumes, seeds, pulses and grains (so most pastas, rice, wheat, oats, corn, barley, etc), fish and all other seafood, & egg whites. This means those of us with MS should avoid:

  • Meat, including processed meat, salami, sausages, canned meat
  • Eggs except for egg whites
  • Dairy products; that is, avoid milk, cream, butter, ice cream and cheeses. Low fat milk or yogurt is not acceptable. Cow’s milk and dairy products are best avoided altogether as the protein is likely to be as much of a problem as the saturated fat, given recent evidence. Soy products or rice or oat milk are good substitutes.
  • Any biscuits, pastries, cakes, muffins, doughnuts or shortening, unless fat-free
  • Snacks like chips, corn chips, party foods
  • Margarine, shortening, lard, chocolate, coconut and palm oil.
  • Fried and deep fried foods except those fried without oil or with just a dash of olive oil. It is important not to heat oils if possible.
  • Most fast foods (burgers, fried chicken, etc.)
  • Other fats and oils

Then there’s the MS Recovery Diet. It’s based on the idea that there are five common trigger foods that can set off the symptoms of MS–dairy, grains containing gluten, legumes, eggs and yeast.  This would seem to be mostly in line with both Dr. Wahls’ advice and the paleo diet.

Lastly, there’s the MS Diet for Women which was designed by an MS sufferer who has, as I have, gone through all the science on diets and MS and decided to smash them all together for the best result.  This diet has you avoid dairy/cow’s milk products, gluten and wheat, saturated fats (meaning red meat), heated fats (in any form), caffeine, refined foods (with high sugar levels), legumes, chicken and eggs, and citrus fruit. What are you allowed to eat?  Fruit (but not citrus!), all vegetables, non-glutenous grains, oily fish, nuts and seeds. That’s it. It’s like the paleo diet on crack.

It’s no wonder, when confronted with this many contradictory diets, that I am stymied as to the correct plan of action. This, of course, keeps me from doing anything but limiting calorie, fat, and sugar intake, which is exactly what both of my current neurologists say is all I should be doing.

I’ll let you know if anything changes.

*waves* Hello there.

Posted in Just Life., Multiple Sclerosis by

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

What’s Going On With Me

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

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

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

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

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

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

Puff, Puff, Pass?

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

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

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

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

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

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

So What Am I Doing?

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

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

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

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

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

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

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

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

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