in which even I am surprised by how much I had to say


My first dose! It really happened!

Let’s talk about drugs, therapies, and approaches. I’m overdue!

I’ve put up a new page to hold a running list of medications, supplements, etc. I’ll update it as necessary, but folks have asked, so there it is. There are a few disclaimers up there that I really want people to pay attention to and I’m going to mention them again here (that’s how important I think they are).

I’m not a medical professional nor do I play one on the Internet; your body and disease/s are specific to you and you should talk to your doctor about your own medical plans.  Please remember that what works for me- or what doesn’t- might be a completely different story for you!

This page also doesn’t exist as a starting place for debate: my treatment plan is between me and my medical team. I appreciate that there are people out there who care, but please refrain from sending me articles, medical suggestions, etc, unless we have spoken directly and you know for a fact that the material is welcomed. I spend a lot of time and energy on my health and wellbeing, but chasing down every lead that comes along can get really weird- and if we are being frank, pretty much every one of those leads takes me to a weird rabbit hole.

Okay, all that done, if you’re looking for info on the various medications, supplements, salves, unctions, etc, that I’m using for multiple sclerosis at any given moment, you’ll find them on the Meds page. I’ll link in some earlier pages on treatments over time, and I’m working on an overall site overhaul (that’s a mouthful) that will help highlight items like those so that they’ll be a little easier to locate in the future.

Pills are important- you do need to be on the right meds, or at least not on the wrong ones. I prefer to be on less than I am now, and one of my goals once I’m settled in with the new neurologist is to reduce, if I can, the amount of medications I’m currently taking. 2014- 15 were rough, though, so I’m not racing to make any huge changes in my chemistry. Everything needs to be gradual and well- considered- moderation is a big part of keeping well.

More important than the medications is lifestyle. My biggest lesson through the last few years has been to watch my lifestyle; stress is not a joke, and can work a number on your body. I have a tendency to use work, particularly physical work, as a place to put all of my feelings; it feels good, in that solid, athletic way, to work through any stress in my life. Sweat- actual sweat- feels productive, and if I’m actually being productive as I’m sweating, even better. Except, in my case, it isn’t better— it’s much, much worse.

Since taking some pretty drastic measures to cut stress in multiple spaces in my life, things are better all around. You can’t just do the work and let it ride, though- the world has a way of creeping back in. I do a lot to maintain a sense of calm. A few universal suggestions:

  • sleep hygiene: Get 6-8 hours on a set schedule.
  • hydrate: Always have a water bottle with you (thank you US military).
  • breathe, damnit: Feel like hell? Probably not breathing deeply/ taking chest breaths.
  • eat: Food is my friend, even if fatigue interferes I find a way to get my meals.
  • cut the bullshit: I’ve learned how to create boundaries, say no with a  genuine smile, and I’m beginning to understand my own limitations (that last one is epic and pretty awesome).
  • schedule: I have my book and I don’t break it unless it’s FORSPECIAL.

Some non- universal things which I really like and recommend:

  • 10 quiet minutes: My bare minimum of meditation. This is how I began a daily practice. You can almost always grab 10 minutes, right? After a while, the time began to stretch. Meditation is an very large part of my life and I think it has a lot to do with my overall health.
  • stretch: Any part of you that feels like it needs it. I like using a yoga strap to help.
  • massage/ bodywork: This was one of the benefits of working at the wellness center, and I need to find someone new- it really does make a huge difference if you have spasms/ spasticity. Look for neuro- muscular integration specialists; I’ve also found myofascial work and Thai yoga massage helpful. Contrary to popular belief even a deep tissue massage shouldn’t hurt, so if you’re seeing someone and they’re brutalizing you, they’re damaging tissue. A skilled therapist can work out knots without leaving you limping the next day. If cost is an issue- bodywork can be expensive- ask your health insurance if they cover services, look for wellness centers with subscriptions, or enquire if it can be a piece of your physical therapy. Patients frequently avoid asking their insurers for this therapy because it is seen as a luxury; while there there are only a handful of studies, there is evidence that massage benefits patients with MS, and my doctors repeatedly recommend it. There are some really good methods for self- massage, too, using tennis balls and rollers; we can talk about that later.
  • quit smoking/ chewing/ using nicotine: Americans finally got around to duplicating the Dutch studies and the results were the same- nicotine is terrible for auto- immunes, and there’s strong evidence tying exposure to disease. Use nicotine? Stop. If you can’t quit altogether, vape a nicotine free e- juice.
  • hobbies: Have them- a couple of them, actually. Find your flow. Replace as much screen time as you can with hobbies. It’s good for the mind, frequently great for your motor skills, and broadens your social set.
  • eliminate known causes of stress/ anxiety: There are things I’ve enjoyed that also cause me to feel stress. Now I either avoid them, or engage in them in extreme moderation. Were they fun? Yep. Are they worth it? Nothing is worth my health. I’ve got things to do.
  • cut out alcohol/ processed foods: Processed food was already out because of Sam’s dietary restrictions— unless I’m on the road, I eat pretty well out of necessity, but that’s good, because while there’s no proven MS diet, a healthy diet and a good prognosis are pretty closely tied. Alcohol is limited to a drink a night on occasion; two, if we’re doing something special.

Let’s talk a little about physical therapy, too: I did PT with a regular physical therapist- exactly what you’re thinking- as well some work with a neuro PT, which was a different experience. The neuro PT focused on issues like refining my reflexes, balance, and sense of my body in space,  as well as taking a series of assessments. If you haven’t haven’t done this yet, I’d recommend it— PT is good just to have the tools on hand, and having that assessment as a baseline for reference in the future is nice, too. Physical therapy isn’t always pleasant- there’s no getting around that- but it should feel structured and coherent, there should be a plan which makes sense to the patient, and you should be working with the same therapists consistently. If anything other than that is happening in your physical therapy sessions/ location, ask for a referral to a different clinic.

I’m a registered yoga teacher and I use yoga as a part of my treatment plan. Some studios offer classes free of charge to individuals with disabilities- occasionally you can even find classes tailored for MS, fibromyalgia, cancer, etc. If you’re lucky enough to live near a teacher who specializes, or if you can find a certified Yoga Therapist, it’s a really wonderful addition. Many studios & teachers offer discounted rates or payment plans, and some will even consider partial payment in barter or workshare.

I haven’t tried stem cell therapy yet, although I do have some folks calling me weekly about it. I let them leave voicemail and send emails; I read their fliers and lately, I idly give it thought. Before anyone starts lighting up my inbox, the research is using adult mesenchymal stem cells taken from the host’s body- that would be my body- so if there are any objections, well, they aren’t scientific enough for me. My concerns are more along the “guinea pig” line. I don’t even like to upgrade my phone when a model is too new, know what I mean? But I’d consider it. Am considering it? I think I am considering it. I’ll pick up the next time they call, at least.

So there’s the list, as best I can figure. I try not to let myself get angry when I’m just walking around, living life, but there will always be politics, the news, and hey, Red Velvet Hostess Cupcakes just keep on existing, so I guess I’ll still have things to get pissed off about no matter what. If any patients or caretakers out there have any questions or comments about this epic list, you’re welcome to throw them out here- I’d love to know what’s working for other folks. I’ve only been doing this since 2009, so I’m still pretty much a rookie, just a rookie who keeps pretty decent notes.

Some knitting to share later this week, as well as thoughts on painting. That’s new, right? My poor house and furniture. Thank glob we aren’t terribly particular people. I mean, we’re clean and all, but if Sam had been awfully particular about things like random streaks of where did that chartreuse come from? color, or if he’d been in love with white furniture? Boof. I’m so glad he’s content with my stubby fingernails and a paint- stained kitchen table.

  One thought on “in which even I am surprised by how much I had to say

  1. February 24, 2016 at 7:49 pm

    Your lifestyle list reads just like my migraine-avoidance list. Need to get better at saying no and reducing stress in my life. Taking two classes this semester was unnecessary, but one of them is fun and the other one is my last required class for the master’s degree.

  2. February 24, 2016 at 8:22 pm

    I have what looked like MS but is not. No lesions. All the other stuff like oligoclonal bands, drop foot, muscle spasms, severe heat issues, which confused the hell out of everyone. Right now it’s inflammatory connective tissue disorder and there are no DMARDs for this. Which sucks, sort of, but then again I wouldn’t let anyone play me for a guinea pig and do those rounds of seeing which one “might” work because there is no evidence based research for that.

    I take a lot of similar medications as well as supplements. I recently added Red Korean Ginseng which is helping with hot flashes. I’m considering adding Rhodiola which is an adaptogen as well for more menopause support. I tried several different stimulants but it’s like watching a 2 year old with a 1 pound bag of skittles, no bueno.

    Every single medication or supplement is taken with the full support of a very involved physician. I don’t try anything on my own.

    Based on my research I could replace most of my medications or at least reduce them significantly with MMJ. Maybe some day I’ll be able to do that.

    Diet is crunchy organic all home made and probably a wee bit too much sugar but I’m working on that. No alcohol at all. Hobbies, oh yes, best way ever to disassociate from the pain. I do a lot of breathing exercises.

    Over the past 3 years I’ve learned to adapt and overcome. There’s no stable but I’ve managed to slow the rate of change. I’m getting a new hip in late May which means I’ll be able to move more. I suspect being able to move more and exercise will be freaking amazing and I am looking forward to that more than just about anything in the world.

  3. February 24, 2016 at 10:41 pm

    Thanks for sharing. It was helpful when I read your post previously over a year and a half ago when I first started taking Topamax for my migraines. I stuck it out, listened to my neuro who kept saying we needed to try upping the dosage. She was right. Your posts were encouraging to me. I know you have a lot more going on and it’s much more complex. I just want you to know that you encouraged me to keep trying. Thanks for being open. janet

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