Reflecting on 2015

It's that time of year when we're supposed to reflect on the previous 364 days. Here's a look back at my year.

Health
It's been a fairly eventful year as far as my MS and general health go, though you wouldn't know it to look back through this sad and empty blog. (One resolution is to show up here more frequently in the new year.) The highlights:

• After 7+ years on Tysabri (a beautiful lifesaver of a drug that changed everything when my MS was wildly active and on a destructive path) and 6+ months on no drugs, I tried Gilenya.
• Around a month into Gilenya, I got a wicked case of Shingles. SHINGLES ARE THE WORST. More than 6 months after the Shingles, I still have scars, but luckily it's not an area of my body I display publicly! For me getting Shingles meant I was DONE with Gilenya.
• Then 3 months of nothing to wash the Gilenya out of my system. Had to decide between Aubagio, back on Tysabri, and Lemtrada. All options suck in their own ways.
• Started Aubagio. Currently on month 4. Had some pretty serious nausea for a few months and some definite changes to the whole bowel system. Nausea is gone. Now that the nausea is gone, I'm happy with taking a pill, but I'm not confident that the drug is working, because...
• Had an MRI a few weeks ago. More than 20 new lesions and at least 5 of the old lesions had grown. So that's not cool. AT ALL.
• Also, some new little symptoms, like serious tingling in one of the limbs that had never experienced that before (lasted a solid 24 hours, and then has continued to come and go ever since.) And some serious tingling in my face, another totally new thing. Also has continued to come and go.
• Bell's Palsy! Left-side facial paralysis that lasted around a month. Since I make part of my living as a professional brass musician, this is a huge deal. Couldn't play for a month, and it all happened right before the busy holiday musician schedule. Took 10 days of steroids and an antiviral, and luckily by the time rehearsals and gigs started, I could play again. I thought this was an MS thing, but it was probably a Shingles-related thing, but after seeing my MRI, doc said maybe it was an MS thing after all. Either way it sucked and I really hope to never experience it again. (I kind of loved it in a weird way though, like a party trick. I took more selfies than I ever have in my life.) 

My Lopsided Face

• Current plan is to continue Aubagio for at least a few more months, at which point I'll have a repeat MRI. If activity has to continued to increase, bye bye Aubagio. If I have a full-blown flare-up before that point, though, I will probably kick the blue pill to the curb then. After that? Probably back to Tysabri.
• Feel mighty ambivalent about my new MS doc, having also felt extremes of really liking her and really not. Still desperately miss my retired Neuro who I loved. 
• In non-MS health news, I finally acquired a PCP and had a physical for the first time in my adult life. Ha. And finally conquered my anemia issue. Also, got the stomach "flu" for the first time in over a decade and had a truly horrifying and awful 24 hours. 

Adventures

• Feburary 2015: Chicago + Michigan for time with family and BFF
• August 2015: Michigan with BFF, tried stand up paddleboarding. The standing up part didn't go so well, but I loved sit-down paddleboarding!
• September 2015: Arizona for a cousin's wedding
• October 2015: reuniting with friends at my 10-year (not sure how that number is real) college Homecoming festivities
• October 2015: Washington, DC for my sistar's super awesome wedding and to meet the coolest dog around, Nala the yellow lab!
• Fun with my fabulous niece a handful of times throughout the year.

my pretty sistar,
photo by my friend Holly

Nala!

SDPing

crafting with my niece

       

Professional

• Still teaching online University classes.
• Still playing my horn.
• Still rocking The Daily Quipple with an amazing team (mom + sistar, the artist)
• Still doing some web design and marketing work.
• Somewhat halfheartedly writing a novel or two.
• Started an Etsy shop (Elegami Papercrafts), and have made over 20 sales. Planning to actually try to market it and take it to the next level this next year.

Personal

• Only read 31 books, which for me is a sad number. 50/year should be the minimum I think. I'll do better next year! My favorite was probably On the Move by Oliver Sacks, but there were several winners.
• Had almost no social life which is mostly/usually exactly how I like it. But I do need to make a little more of an effort on occasion to interact with other human beings.

Goals/Plans/Resolutions for 2016

• 2 big MS-related projects are in the works. Stay tuned!
• Be slightly more physically active. Trying not to set a huge ambitious goal as it will almost certainly lead to failure.
• Read more books.
• Take both TDQ and Elegami Papercrafts to the next level.
• Post here more often! Should I set a specific goal in terms of frequency? I don't know. Often goals and I don't get along, but a general good intention kind of feeling also often leads nowhere. I set a new low this year with only 3 posts. I stop reading blogs that post so rarely, so I need to shape up!

Happy New Year! May it be healthy and happy and fulfilling. 

Magazine Monday: On Diet

a past CSA share from my awesome CSA farm

Diet and its potential role in causing/treating MS is a controversial topic, and one that tends to make me somewhat angry. Why? The various diets are generally presented as amazing miracle cures, yet there are always plenty of people who try the diet and it does nothing for them. Also, the core aspects of many of the popular diets are EXACTLY HOW I'VE ALWAYS EATEN! Yet, along came MS anyway. Perhaps if I ate a typical American crappy diet full of processed foods and lots of meat my MS would be much worse? Or maybe diet doesn't have the HUGE role in MS that some of the devotees of various diets would have us believe. Don't get me wrong - I certainly believe diet plays a significant role in our overall health and well being, I just question how much of an impact it can have on MS in particular.

The Fall 2014 issue of MS Focus featured interviews with 2 of the popular MS diet leaders. The Wahls Protocol, led by Dr. Terry Wahls comes with a pretty remarkable story. Dr. Wahls gave a TEDs talk about how her extensive research and then overhaul of her diet took her from having to use a zero-gravity chair and dealing with severe fatigue and brain fog and being considered secondary-progressive to pretty much regaining all of her abilities. Her diet is based on the Paleo diet, but goes beyond it by adding and carefully tracking 36 vitamins, minerals, fats, and antioxidants. The diet consists largely of leafy greens, sulfurous veggies, deeply pigmented foods, grass-fed meat, wild fish, and seaweed. The fact that she is a doctor and did so much extensive research and continues to test her diet extensively gives this diet more credence. However, I'm skeptical about its powers. That she could go from point A to point B just from eating this way (though she also did other things, like neuromuscular electrical stimulation) seems pretty unbelievable. Not that it happened for her, exactly, but just the idea that the diet would produce this same kind of effect in others. I'll continue to follow this, and I am curious to read her book, but I need some convincing to jump on this bandwagon. I've got the veggie side more than covered, but I eat almost no meat and I'm also not a fan of most fish and seaweed. I also eat whole grains, which aren't a part of her plan. I'd be willing to give this diet a try, if I am convinced by the book and/or further research.

The second diet discussed is Dr. John McDougall's diet. I'm pretty sure that he is not an MS patient himself. This diet is in many ways the opposite of the Wahls Protocol, in that starches (beans, corn, sweet potatoes, rice) are hugely important. The diet is generally vegetarian, and also involves eating plenty of veggies and some fruits. He's also done plenty of research and has led over 10,000 patients in it. His studies show significant positive impact on reduction of fatigue, in particular. There is no evidence to support the idea that this diet reduces disability or shows changes on MRI. This is the interview that really pissed me off, because this diet is pretty much exactly how I eat and have eaten since before I got MS. McDougall goes so far as to basically suggest that eating poorly causes MS, calling it a disease of food poisoning! I can't even begin to tell you how upset this statement makes me!! This diet is great, and good for your overall health, yes. That this diet causes and can treat and "reverse" MS is total BS.

P.S. Posts 2 days in a row? Woah, will this trend continue?! Time will tell.

On Shingles

I don't think I've written all that much about my course of DMD treatments. Here's a quick run down. I was on Copaxone for about 6 months, then Tysabri for about 6 years, and I've just recently tried Gilenya.

Gilenya was great for awhile. My heart rate took about a month to normalize, but otherwise things were good. Taking a pill once a day was easy and there weren't really any side effects.

But then, 2 months in, shingles happened. Shingles! SHINGLES! AKA, the worst thing ever. Two entirely miserable weeks. About 3 days of EXCRUCIATING pain, exacerbated by things like moving and breathing. The rest was just varying levels of bad pain and some pretty extreme itching towards the end. I say the end, but it's been about a month now and I still have a few scabs left and pink scars that will hopefully eventually go away. I also occasionally still feel little sharp jabs of pain in the rash area, but nothing like it was before.

I'd love to share some pictures of my awesome rash, but I don't want to scar you. From extensive googling of it myself, I know that looking at other people's rashes can be horrifying and disgusting. However, I really enjoyed examining my own collection of blisters. I took lots of pictures, and they are awesome. But probably only to me!  I mean, they're awful, and they remind me of how awful it was, but still they are somehow awesome to look at. Since I'm kind, I'll just use this picture instead. When my niece heard that I had shingles, she said "You mean like those things on the roof of the house?" Yup.

credit: Randen Pederson

Because the Gilenya caused the shingles and because I really really really don't want to get shingles again, I'm currently on the market for a new DMD. I'm considering returning to Tysabri (which was like a miracle for me taking me from like 10 relapses a year to zero and which I was very happy with but ultimately the PML risk - even though so far I've been JC negative - is mighty scary especially with having already done it for 6 years) but am leaning towards Aubagio. Doc wants decision by tomorrow. Concerned about GI side effects and hair loss, as well as possible risks, but we'll see how it goes!

One Year Ago: My Caribbean Cruise Adventure

According to my Timehop app, this week marks one year from my epic week cruising the Caribbean with my best friend, Heather. I've been meaning to write about this trip here ever since! So here is my long overdo cruise recap!

Some highlights:

• many a long talk with my wise friend about all of the things
• floating on a raft for hours in the Bahamas under a perfect sky!
• kayaking in the Bahamas!
• swimming with dolphins!!
• chilling at the most amazing beach ever in Anguila with the softest white sands and the clearest aquamarine and delightfully warm waters!!
• amazing food with amazing service on the boat
• reading a novel on deck in a lounge chair
• ping pong!
• hiking in the rainforest in Puerto Rico
• watching Heather surf on the boat (she was awesome!)
• ice skating on the boat
• towel animals in the room from housekeeping
• sunsets!

Picture time!

our boat: Royal Caribbean's Freedom of the Seas

sting ray!

view from hammock

after somehow conquering the rainforest hike that was almost too much for me

yes, please.

one day it was REALLY windy

another new life experience: playing the slots! wasted $5
and will probably never do again, but glad I did it.

loved this colorful lady and her big bum.

The trip left me incredibly exhausted and with a super painful sunburn, but oh man was it all worth it. Memories of this week has sustained through yet another long tundra winter. Overall, it was an incredible experience. I didn't expect to love cruising as much as I did, and now I can't wait to do it again. Something I found myself reflecting on during the trip is that a cruise could be a pretty perfect vacation even if I wasn't doing so well physically. The boat was very accommodating for disability, and there would still be plenty to see and do. A bonus is that more able-bodied loved ones could still do more adventurous and demanding activities, even if my body kept me more on the sidelines. This particular trip itinerary was also pretty great for me, because there was an alternation of days at sea and days in awesome places. The days we had excursions on shore were long and action-packed. There would be no way I could do all I wanted if these days were all back to back. On the days we were at sea, I was able to sleep in and generally have a much easier day to recover. And there is plenty to do on the boat, so Heather was able to keep occupied and still have a good time while I was resting.

An Unwanted Christmas Gift from MS

My family tradition consists of a big meal and the opening of gifts on Christmas Eve and then an abundance of snacking and lounging and the playing of games on Christmas Day. This year, we spontaneously decided to mix it up a little and go bowling on the evening of Christmas Day, since we had wanted to go bowling over Thanksgiving but never got around to it.

Bowling was something I never did more than once or twice a year growing up through early adulthood, and it's something I haven't done at all in probably 8 or 9 years. I definitely haven't gone bowling since MS entered my life. I was never an amazing bowler, but I was always a pretty decent bowler. Various people in my life like to talk about how I am a natural athlete, and I guess I admit that this is true. Most athletic endeavors come fairly easily to me. I spent most of my childhood playing basketball, baseball, soccer and various made up sports in the backyard and with neighborhood kids.

I didn't really give it any conscious thought beforehand, but I really assumed I would bowl just as decently as I ever did. After all, I'm doing pretty okay physically these days. The MS symptoms that plague me on a daily basis are things like pain and fatigue and various tingles. I look pretty healthy and able-bodied, and sometimes I even convince myself that I am these things. Anyway, I did basically bowl pretty well, not great by any means, but not terrible either. One strike, a few spares, a handful of 9s. But very early into the game the MS made very clear to me that things are not as they were and I am not quite as able as I thought I was.

My second frame, I fell. I hit the ground hard and had a tough time getting back up. None of my people saw me fall, so it felt very lonely somehow, yet I felt the humiliating certainly that everyone else in the bowling alley saw me and was silently laughing (even though I know rationally this probably wasn't true). Yes, bowling shoes on the wood floors can be a little slippery, but this was more than that. It was about balance. It was about no longer being at home in my body the way my "athletic" former self was. It was about the MS wanting to forcefully remind me that it was in charge.

After that frame, I bowled cautiously and somewhat awkwardly. I was careful. I thought about balance, not about form and power and the desire for the perfect strike. I somehow managed to do okay despite this, but I didn't do nearly as well as I could have. And the joy of the physical action was gone. I've always found joy in athletic pursuit of all kinds. There was a joy in releasing the ball, in seeing it strike. MS robbed me of that joy. And then on the last frame, despite my caution, I fell again. Merry Christmas to you too, you stupid disease.

I still managed to mostly have a good time. I did my best to get out of the depressing spiral in my head and instead focused on enjoying being with my family, especially my sistar Traci and my special niece Kylie, neither of whom I get to spend nearly as much time with as I'd like. The best part of the evening was Kylie's last frame. After some frustration and experimentation with different methods from the "granny style" underhand roll to using the metal frame tool for kids, she tackled that last frame with determination and used the "adult" method. That ball rolled perfectly straight down the lane and knocked into those pins head on. It wasn't a strike, but it was pretty darn close, and it was beautiful.

On Lyrica Withdrawal

Since this past May, I have suffered through the most intense horrific experience of my life on three separate occasions. I take an extremely high dose (300 mg more than the maximum recommended dose) of Lyrica for my chronic nerve pain, and I've been on this dose for several years. It's been a miracle drug for me, and is worth every horrible side effect (weight gain and serious fogginess/fuzziness, mostly) because of how much it controls my pain. I've also been on Cymbalta and Tramadol during this same time period, so the three drugs work together to keep me functioning. On three different occasions, I've been suddenly completely without one or all of these drugs, for three different reasons:

• The first time was my fault. My pharmacy is not in the town I live in, but is in a town I am in regularly so it usually worked out pretty well. For whatever reason, during this stretch I was too busy and tired to get there and I ran out of pills. I knew I would be going through the Pharmacy town the next day, so I thought I would be okay, with one day without. I HAD NO FREAKING IDEA. Not even 24 hours of it and it was complete and utter hell.
• The second time was because of the fun and delightful surprise of losing my health insurance suddenly and not being able to afford the drugs without insurance. This time I knew what was coming, and it was every bit as bad, if not worse because this time it wasn't just Lyrica but all of my drugs at once. Luckily it was only a little over 36 hours until payday, when I could allocate money that should have gone to food and bills  afford to buy some pills. I decided I could only afford the Lyrica, though, so I stayed completely off the Cymbalta. I still had a little bit of a different dose of the Tramadol on hand, so I wasn't cold turkey on that one at least. I also decided I could only afford to take 2/3 of the normal amount. The relief wasn't total, because my body still wanted the full dose, but it was still light years better than total lack.
• The third and most recent time was due to the fact that my current neurologist (the replacement for my beloved previous guy) is a jerk. (He works at location 1 and location 2. I see him at location 1, but he is only at location 1 one day a week. He was at location 2 and refused to write the scrip until he was at location 1 a full five days later. I personally think this is a blatant violation of the Hippocratic oath, and I will not see him again after this ridiculous debacle.) I was in the worst of it for a little over 24 hours, but I absolutely knew I couldn't make it 5 days, so I went to the ER. For me to go to the ER for anything at all, as anyone who knows me will attest, it is an extremely serious situation. I was worried the ER doc wouldn't prescribe, but luckily he did, even though he expressed concern about the dosage. He also offered to print me off an article from the internet about MS (ha!) but I assured him I was pretty much an expert at this point. My new insurance then wouldn't cover the pills, but luckily once again it was shortly after a payday, so I could allocate money away from bills afford some pills until the prior authorization insurance crap goes through.

So what is Lyrica withdrawal like? At least for me, it included the following symptoms:

• EXTREME and CONSTANT nausea and diarrhea. 
• The complete impossibility of sleep. and the complete inability to concentrate on reading or watching something while awake so basically being awake all night with nothing but a constant stream of your internal voice loudly yelling MAKE IT STOP!
• Violent shivering chills AND hot flashes, either cycling very rapidly between the two states or sometimes happening simultaneously which was BIZARRE and extremely upsetting.
• Headache
• Impossible to be comfortable in any position or with any kind of fabric or surface touching my skin. I tired everything. Everything felt wrong and terrible. All night long while I wasn't sleeping, I was putting different items of clothing on or off and running around my place from bed to chair to floor to other chair to other bed to pressing my body against a cool glass door and so on.
• Hallucinations, mostly auditory.
• A DESPERATE desire for relief from all of it. I truly cannot imagine surviving even 48 hours of this. I know it makes a lot of people suicidal. I was not at that point exactly, but I was on the edge of going CRAZY, like not in control of myself and the MAKE-IT-STOP feeling overpowering absolutely everything else.
• Plus, you know, the PAIN that the drug was previously masking. SUPER INTENSE VERY BAD NO GOOD PAIN. If it was just the pain, I could deal (I went many months with the pain before finding drugs that helped at all), but the pain plus all of the above combine into THE WORST THING EVER.

Internet research has told me that even with long and very gradual tapering down from this drug, withdrawal is still terrible and lasts a crazy long time. Also of interest is that apparently, they give some people going through Heroin withdrawal Lyrica to deal with the withdrawal symptoms. That is disturbing as well.

Here is a perfect visual analogy. Lyrica withdrawal turns this:

into this:

So, there's my Lyrica withdrawal story. I hate that I have to rely on a drug that is so very powerful. I hate that my doctor is a jerk. I hate the entire insurance industry and the pharmaceutical industry, for that matter. But I love that I am now back on the drug and the world is okay again. My Central Nervous System is finally satisfied that we aren't actually facing Armageddon, and is keeping things running.

This whole experience has also given me WAY more compassion for people dealing with other kinds of drug addiction and withdrawal. I can see how even the strongest resolve and true desire not to be on drugs could be easily overpowered by the overwhelming NEED for the drugs or the need, at least, for the horrible feelings of withdrawal to stop.