Not Letting MS Win.

Adam and I have been very committed to fitness over the last year. We’ve changed many of our eating habits for the better, learning how to live without wheat and adding many more veggies to our diet. We also managed, most weeks, to get to the gym 3 times. This year, we’re going for 4 times a week. While I haven’t seen much in the way of weight loss, my body has reshaped, so that’s a step in the right direction. I know I’m building muscle. I tell you all this not to brag, but because it’s relevant.

So Ridiculously Counterintuitive…

Monday and Tuesday of this week, I was dealing with some pretty intense MS fatigue. The idea of going to the gym was ludicrous to me. (Hey, I’m having a hard time walking to the bathroom fast enough. I know! Let’s lift weights!)

Now, you have to understand, MS fatigue is utterly and completely different from being tired. You can be in a great mood, be motivated to do things, and quite literally not be able to make your body move without extreme effort.  You can be extremely sleepy and not able to actually sleep. Sometimes, it’s like wearing a lead apron over your whole body. At other times, it feels an awful lot like turning into a weak puddle of goo.

This graphic perfectly represents what MS fatigue does to you.

This is what MS fatigue does to you.

“The exact mechanism of MS fatigue is not known, but studies suggest that changes in the brain caused by MS may require MS patients to use five times more effort to complete a simple task than a person without MS,” says Julie Stachowiak, PhD, author of The Multiple Sclerosis Manifesto: Action To Take, Principles To Live By.

Never being one to take things lying down (literally!), I had to research ways to combat fatigue.

The most consistent suggestions on the internet were pharmaceuticals (like ProVigil) that I can’t take thanks to hypertension, simplifying your life (which doesn’t help when you’re already in the throes of the beast), treating depression if you have it (check!), and exercise.

That’s right — exercise.  When it’s hard to move… move more. It sounded bassackwards to me. I was actually angry thinking about it.

But it works!

According to the National Center on Physical Activity and Disability (NCPAD), “A study conducted by researchers at the University of Utah demonstrated the benefits of exercise for people with MS. Those patients who participated in an aerobic exercise program had better cardiovascular fitness, better bladder and bowel function, less fatigue and depression, a more positive attitude and increased participation in social activities.”

More recently, a 2013 study conducted by scientists at the Division of Physiotherapy and Rehabilitation at Istanbul University demonstrated that supervised group exercise training is effective in improving balance, functional status, spasticity, fatigue and quality of life in moderately affected people with multiple sclerosis, with no worsening of their clinical status.

So, despite my goo-like status late Tuesday, I cowgirled up and went to the gym. Mind over grey matter. I was honestly shocked by the immediate results.

Sure, I went slower on the stationary bike than I usually do (It was so tough!), but after about 20 minutes of entirely willpower-driven strenuous activity, I was no longer desperately wishing for sleep or even wanting to quit. I felt the heavy, pressing feeling lift. I suddenly had energy like it was a normal day. I was even able to finish up my 30 minutes on the bike and do a 15 minute cool-down on the treadmill. Like a boss.

Exercising = Having Energy

I have a theory about MS fatigue and when it hits me hard.

Last week, we went to the gym 4 times (M,T,Th, &F), and then we took the weekend off. After 2 full days without any exercise, I had some of the heaviest fatigue I’ve experienced… so I took Monday off too, thinking that my body needed the rest. (Wrong.)  Tuesday morning, I was certain I’d been run over by a steam roller in my sleep… but Tuesday night, I hit the gym. Today, after working out regardless of fatigue, I feel significantly better than I did the last 2 days.  If not for the tingling paresthesia in my back, I’d actually feel normal. Then again, I’m so used to the tinglies on my back that maybe this is “normal” for me.

Anyway, my theory is that my body now requires that I work out almost every day for it to function properly. When I take more than 1 day off from exercise, I experience fatigue. And fatigue sucks so much. It’s like gravity is trying to crush both your body and your spirit. Last night, I actually had the thought that cycling was like mining for energy… that cardio, for me, is like plugging myself into a charger. I honestly think that daily cardio exercise is going to be the only way to keep fatigue at bay.

If it really is this simple, maybe this crazy broad wasn’t as insane as I thought she was.

Neither of us is going to let MS win.

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.

Tecfidera & MS Diets

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.

Day 4 of 5: Current IV-SM Treatment – Important Side Effect Notes

Usually, this is the kind of thing I save for Patients Like Me, but after reading today’s Trauma Tuesday on PTSD and learning of the concept of “passive suicide” – something which, I’ve apparently been engaging in most of my life… (a lifestyle of recklessness and hanging around those who are reckless, not really caring if you get hurt; cept I’ve spent more of my life toeing the line on both sides… sometimes earned me the nickname “Goody toe shoes,” sometimes, “Mom,” and all too often, “Bitch.”) I feel it is somewhat necessary to say this:

Weed is a necessary drug.

I did not inhale cannabis this morning, as I usually do. When I did not do this, and I had my IV-SM infusion, I ended up a having horrible time with suicidal ideation today. I also experienced PTSD flashback memories. I just remembered them: no hallucinations or anything. It was just very vivid. I am referring to some of the repressed memories that I recovered during EMDR treatments.

It was not until I was willing to smoke out that I was able to calm down enough to be okay tonight. I needed Adam to tell me to use it before I realized I needed it because physically, the IV-SM was masking the pain entirely. I just kept suddenly crying and not knowing why.

I need to treat the medical marijuana exactly the same as I do my pills. I need to be better about measuring the stuff and when I take it.

Bright side: No seizures.

Oddly, I feel this is winning. Or at least in the right direction.

Boobs and small animals

Yes, that’s right, boys and girls – this is, in fact, a post both about boobs and small animals. No, this is not a cheap ploy to get readers.

Ok. It’s a cheap ploy to get readers… but it’s also true!!!

First thing’s first: BOOOOOBS!!!!

Alright, you granola mommas out there – if you needed one more reason to pimp the benefits of breastfeeding, here it is. Exclusively breastfeeding your babies for at least 2 months after pregnancy lowers the risk of MS relapse/exacerbation after pregnancy by more than 50%. (Story here)

Random internet propaganda booby baby says,
“Join the fight against MS! I’m doing my part!” 🙂

Today, I’m doing really great. Day 2 of no steroids, and some of Adam’s good friends are in town from Chicago. We went out for dim sum, and I even had enough energy to go walking around Chinatown. I can’t say I’m that surprised, though – last night I walked for a half hour around the neighborhood. I’m really feeling great! And I feel even better about feeling great. 🙂

And now, cute animals! (And your picture of the day!)

That’s Brody (upside down) and Piglet, two of our first fosters, adopted out in January. I love renting cute and then giving it to other people to enjoy. I wish we had some babies right now! Soon, though – it *is* kitten season in March, afterall. If anyone’s interested in learning more about kitten fostering, please let me know!

Happy Caturday, everyone!

ProVigil ain’t no lie.

It’s seven minutes to 1 am, and I am *wired* still. Obviously, this means that it is tea time! (What? Don’t give me that look! Tea fixes everything!)

In all seriousness, I’ve tried tons of sleep-aids in my ripe old 28 years, and I have to say that Celestial Seasonings Sleepytime Plus Wellness tea is by *far* the best for me. No awful next-day fog, no need for a prescription, no nothin – just 2 cups of tea and 30-45 minutes. I love that stuff.

Other things I really love: 3 days of no seizures at all!

I’m also stoked because it’s exactly 2 months until the 2009 MS Walk. I’m still looking for people to join my team, and I am totally pimping this site out to get members. I don’t care if you walk. I don’t care if you are in the same country! I just want all of us — all of my friends — to join together in this year’s fundraising effort.

I’m going to be headed to some local stores to see if they’ll do a “Give a dollar to MS” for a sticky note that goes somewhere, or for a small raffle or something.

Did I mention that I’m feeling better? Because I’m feeling *better* – and I mean it in that kind of “I actually feel like myself” kind of way. It’s been *so* long since I felt like this that I don’t trust it.

Of course, yesterday I also managed to fall in my neurologist’s parking lot. I didn’t even get all the way out of the car before my foot went out from under me. Wanna see my strawberry? Cut for the squeemish