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.

More Scenes from Summer Walks

a tiny nest, perhaps from a hummingbird!

a tiny truck cruising the streets

love the reflection!

can you spot the deer?

On Spoons

On that both wonderful and terrible timesuck that is Facebook, I saw this image posted by WEGO Health:

The best part was reading and agreeing with several of the people who commented. This infographic does explain the spoon theory somewhat, but I and many others seem to question how accurate it is for those of us with chronic illness. After all, you could consider the spoon theory to apply to all humans. Some humans just have a lot more spoons! In my opinion, this infographic and the person's day it represents could very well be that of a normal, healthy person! All of the tasks of daily living take something out of a person, and most people can only do so much in a given day. This looks like a pretty full day to me! For myself and many others with chronic illness, this day would not be possible, at least not with "borrowing" several spoons from the next days. The challenge of doling out spoons is that there is NEVER enough to do everything you want to do, and often not even enough to do what you need to do! It is always a matter of deciding between different items. Go shopping and cook dinner? More like one or the other! And assuming work is a full day, only four spoons seems unlikely, even for a relatively "easy" job.

Another point several commenters brought up is showering. They laughed at the idea that taking a shower would only count for one spoon. I agree! Showering can be one of the more depleting, exhausting acts for me. Unfortunately for those around me, this sometimes means I don't do it as often as I probably should! I choose to allocate my spoons elsewhere.

Where my spoons go is always a choice, and often a painful one. I don't always make the right choice, and I often regret my choices. Such is life a spoonie! If only spoons grew on trees...

Scenes from Recent Walks

During the summer (when I have more time) I try to take walks as frequently as possible. There are plenty of days when the heat and humidity make it unbearable, but there have been several days lately that haven't been too bad. Here are some images from recent walks I've taken:

wild turkeys!

turkey feather

The last two are from my instagram. I'm pretty active on it, so follow me @nelsonkl23 if you want to see more glimpses of my life! 

Magazine Monday: Dangerous Language

from the June 2014 issue of Good Housekeeping

I have a pretty big issue with this story from Good Housekeeping. Language is important, and it can be dangerous. I get it, it's a great headline - "How I dropped 165 pounds, beat multiple sclerosis and found love" - but is it truly accurate? Beating something in this context generally means fixing it completely, curing the disease, getting over it, moving forward without it. Did Tabitha do this? No!!

The supposed miracle solution Tabitha used was adopting a healthy lifestyle, including improving her diet and adding an exercise regimen. Great! I'm happy for her, and I think this should be a part of absolutely everybody's life, whether they have MS or not. But the dramatic improvements to how she felt after losing 165 pounds - and the fact that she wasn't currently experiencing any flareups - did not at all mean that she had beat the disease! It did not mean she was cured! In fact, at the very end of the article, she admits to "experiencing occasional aches and tingles." She still has MS, and who knows how the disease will progress!

I could go into a secondary rant about Tabitha's decision to completely stop any kind of MS drugs, and her statements suggesting that a healthy lifestyle is slowing the progression of the disease, but I will refrain. I don't judge or begrudge her personal decisions, and I'm happy for her success and happiness. How to manage the disease is a personal decision and I don't think there is one right answer for everybody.

If I were to go into a secondary rant, it wouldn't be about Tabitha and her decisions - it would be about the danger of this kind of story in a major publication, without some well-rounded perspective. I think this kind of article, with it's sounds-too-good-to-be-true copy is dangerous both for people with MS but also for the general public who don't have any experience with the disease. There are enough well-meaning but clueless people out there who constantly suggest to people with MS that they should try a low-fat diet or an emotional cleanse or some other kind of maybe-helpful-in-some-general-way-but-NOT-A-CURE piece of crap. I'd just like to see an article in a magazine like this that tells a more helpful story about the disease. It's a subtle thing, but the language chosen to tell a story is SO IMPORTANT!!! Okay, end rant.

An Interview with MS-Fundraising Marathoner Olivia!

I'm very excited to share with you today an interview with a very special person, my sister's BFF and a good friend of mine, Olivia. This past fall Olivia ran the Chicago Marathon and raised loads of money and support for MS. I am honored to be a part of her inspiration for running under the MS cause. I think there is something especially poignant about the marathon+MS connection, since it is such an extraordinary physical feat that many or most MS-ers are simply not capable of. I also know that many people with MS (myself included) who didn't particularly enjoy running pre-MS become incredibly jealous and long to be able to run. My neurologist once told me that for the brain there is a huge difference between walking and running. I know this to be true, since I currently walk without problem but on the occasions when I run a little burst here or there (chasing after a ball or something similar when playing with my niece, for example) I often experience a scary lurch-catch phenomenon where my brain/body is a few steps behind my intention. So in addition to everything else, I thank Olivia and others like her for letting us live vicariously through her. Now on to the interview! Thanks, Olivia (or ia, as I sometimes call you!) for being so very awesome and for your caring and support.

Oliva post-race!

Why did you want to run a marathon?

I have been running for a long time. When I was little, I would watch my dad get ready to go on a run after work. One day, I decided to join him and fell in love with the feeling I got from running. Ever since, running has been very important to me. Eventually, I made running my hobby and started to run races. Many runners dream of conquering a marathon, and I was definitely one of those runners. I knew that running a marathon would take dedication, determination, and much focus. One day, I was watching the Chicago Marathon and decided that 2013 would be the year I would run it!

Why did you decide to go the extra mile (haha) and run for MS?

Charities are a very important part of running the marathon, and the Chicago Marathon is a great way to raise money for all kinds of causes. I had never run a marathon before, but I knew I didn’t just want to run for myself. I was inspired by my friend, Kayla (La), who is battling MS. La’s sister, Traci, is my best friend. Hearing from Traci how strong La has been throughout her illness made me want to run for her, along with all those who suffer from MS.

One short month after signing up for the Chicago Marathon and pledging to Run for MS, I started my job as a social worker at Northwestern Hospital on the neurology unit where each day I work with patients who suffer from MS. My new job gave me, and continues to give me, an insight into how much MS affects the person, their family, and their friends.

Tell us about the experience of running the marathon, of putting you body to the test like that.

The marathon was, in a word, AWESOME. When I started training, I injured myself in the 4^th week. I had Achilles tendonitis and was told not to run until my physical therapist said I could. This was TERRIBLE news. I was worried that I wouldn’t be able to run the marathon at all. After going to therapy for about 8 weeks, I resumed running and trained for the remaining 4-6 weeks. Since I had such little training, I feared that I would get injured again, or worse, not be able to finish. Despite my fears, I completed the marathon and was beyond happy as I crossed the finish line.

Throughout the marathon, I ran without music. I did this because I wanted to hear all the cheering from the spectators along the route. I’m so glad I did that. I would hear “GO MS!” and “RUN FOR MS”! It was so uplifting and gave me the boost I needed many, many times throughout the race. After the race, I was tired and sore. I didn’t want to do anything but sleep. I felt lucky that I could even run at all, when so many people who suffer from MS are unable to even walk at all.

I call my blog The MS Muse, because I find the disease makes me see the world in a different way and inspires me in unique and interesting ways. How have your experiences with MS (and the experience of raising money and support for MS with the marathon) influenced the way you see the world?

As I have mentioned before, I didn’t take finishing the marathon for granted. My experiences with MS have shown me that many suffer from terrible pain which often prevents people from walking or even moving at all. Raising money for MS was not difficult because I was able to really speak from the heart how the donations would benefit MS research and overall support. Some people who donated chose to tell me their experiences with MS as well, and it served as even more fuel for my training. In general, both running and fundraising for MS, taught me that as running was painful and fundraising was stressful, I could overcome it with perseverance. My motivation and inspiration was reading about and seeing others with MS who persevere over their own pain, sadness and fear.

What are your plans for the future - do you want to run more marathons and do you plan to stay involved with the MS cause?

I caught the bug. I will be running more marathons for as long as I can run! In 2014, I plan to run a few half marathons and will run the Chicago Marathon again. I will definitely plan to stay involved in the cause for MS in the future, whether it is for the Chicago Marathon or any of the half marathons I will be running. 

The quipple-ized Olivia, and a metaphorical
message true for both running and living with MS.
from thedailyquipple.com