August 29, 2014
While going through a lot of medical problems–while going through any problems–there are always people who want to help. (I assume that many people want to help. There are probably a few who merely want recognition. But I’m generally optimistic and will assume that most people mean well.)
I have been both on the receiving end (ugh, too many times) and on the giving end, wanting to help those in need. Thing is, I know when I’m on the giving end, it’s hard to figure out how to help the recipient. Do I make them food? Do I clean their house?
Having been on both sides of the equation, I will tell you this: if you’re trying to figure out what to do for someone, simply ask what they want or need. A few times after surgeries, I have had no appetite and been totally unable to eat, and friends have thought themselves “helpful” by making me a lot of food. I would’ve rather they spend their energy and time sitting and talking with me, rather than making food that I wouldn’t eat.
In the end, just ask for specifics–the recipient will feel like you really are offering your time and talents.
August 26, 2014
…or, eating healthfully at all while on the road.
So, so tempting on my recent road trip in the South to load up on everything around me: fried this, barbecue that, sweet tea until my eyeballs float… which is totally OK to do every now and then.
But after the first few days of our trip, my body was screaming, NOOOOO!!! I was sugared and greased to the gills. I’m not used to eating that way.
What to do?
- I attempted to portion-control by sharing with my husband. We’d often order one entree and split it.
- Sometimes, we were able to portion-control by just ordering appetizers. That way, we could also try multiple items. Unfortunately at some restaurants, the appetizers list was full of fried, cheesy, rich items (i.e. not dinner).
- In more touristy towns, I’ve often found that “all you can eat” and cheap prices tend to go along with lower quality food. Yes, you get more for your dollar, but do you, really? If you’re getting more additives and preservatives…
- I’ve also learned to listen to my cravings. (Hm… maybe not if they’re for ice cream…) I spent a lot of the trip craving tomatoes, of all things, so I figured that my body needed some component of the tomato. I didn’t eat them every day, but got them several days on the trip, figuring it was a sign.
- I think it also goes without saying that if you’re traveling someplace warm… stay ahead of hydration needs. Keep on drinking. We were traveling in warm areas, I get dehydrated easily, so (sadly) I had almost zero alcohol on the trip–only a sample or two from a distillery. (It was how I avoided headaches…)
Anyway, just a few thoughts regarding eating, traveling, avoiding dehydration and other MS symptoms. If anyone else has other thoughts and would like to chime in, write ‘em in the comments!
August 23, 2014
Just saw a trailer for a new movie about Stephen Hawking which will be coming out in a few months:
Now… I’ll admit to not buying into all of the hype about the guy, in general. I think a lot of the reason people think he’s so brilliant is his mere publicity due to his ALS. As a scientist myself (but in a totally different field of science), I don’t think he’s worlds more genius than Elon Musk or Craig Venter.
Having said that, Stephen Hawking has had to overcome a hell of a lot physically… and still contributes to society. I think this trailer captures this idea beautifully.
And as someone who also has a neurological disorder, I can appreciate that, and I live by that notion myself!
August 20, 2014
A few days ago, I was trying to decide between new MS drugs (or, disease-modifying therapies, as we call them, since they only slow progression…)
And I did 15 minutes of research to figure it out–or at least to figure out one to try. I think I’ll try Tecfidera (the newest one) first. It’s a little scary for me, as the side effects involve the stomach and GI tract, and I have chronic nausea problems.
But with Aubagio, several people have lost their hair (and I’d rather not go there if possible).
And Gilenya causes heart rate to slow down… mine is already on the slower side. I was given beta blockers for migraines years back, and the slow heart rate side effect made me feel so sluggish.
Tecfidera it is. No MS drug is ideal. I’ll give it a go and report back within a few months…
August 17, 2014
Hm. This is an odd one for even me, the nutrition geek.
For days now, the thought of anything sweet makes me nauseous. I want to overeat almost anything salty or savory.
Could it be lacking electrolytes? (despite taking my daily magnesium supplement) So bizarre. I’m still trying to figure it out… I’d go a million miles for something savory.
Anyone else with MS/migraines/chronic pain experience anything similar?
August 14, 2014
I think I’m about done with injections… unfortunately.
Rebif has been working out for me. It has kept me relapse-free. My symptoms have been minimal. So why change?
I feel like such a wimp when I say this, but… too many injection site reactions. A few days before leaving on our trip (end of July) I saw someone at my MS clinic and had a chat about what I thought were lumps from injections. Unfortunately I have a limited number of areas where I can inject myself, since we need a certain amount of subcutaneous fat for injecting–and I don’t seem to have that in the usual areas (hips, upper thigh). The only place I’ve been able to “pinch an inch” for injection is my abdominal area.
That’s gotten a lot of abuse recently, as I’ve also had to work around surgical scars–so I’ve had even more limitation in my injection areas. My specialist understood my dilemma, but told me that this was unhealthy for the skin. She was the one who suggested I switch to one of the oral meds.
I had been reluctant to switch when Tecfidera came out, since Rebif was doing its job. But the side effects are driving me nuts. Also, an oral drug would make travel less inconvenient.
She was also mentioning Aubagio or Gilenya, but I recall side effects being worse for those two?
I need to research all three and make the decision for me (she said that Tecfidera was her top choice)–any thoughts from anyone taking them?
August 11, 2014
Some days, it feels like I’m always waiting…
Waiting for the migraine drug to work.
Waiting for the anti-nausea drug to chase the migraine to work.
Waiting…. to live.
Can you relate?
Do you know what it’s like?
Some times, you wait… and nothing comes of your waiting.
Aside from disappointment.
Disappointment in yourself, that you’ve let others down, and that you’re missing out on life.
Some times, it’s OK to push through the waiting.
But there are some days that it’s not.
August 8, 2014
See the world! Go out and DO stuff! That’s my mantra, what I’m always preaching, right?
In my world right now, traveling is hard work. Because I’m trying to see everything! And I’m trying to do everything! Aaaahhhh!
And since we stay in airbnb facilities so often, with the point of getting to know the innkeepers, we come back from a day of sightseeing… and then, it’s tempting to chat! And being social, that’s hard.
First-world problems. Yeah. I know. Wouldn’t it be great to always have these sorts of problems?
The reality is, these days, I have to know when to hold ‘em and know when to fold ‘em. I think I’m handling MS symptoms well, but that on top of heat/humidity and my body’s dealing with three abdominal surgeries this year, plus putting in some hours to my online teaching job while on the road as well… let’s just say it’s a learning experience.
And isn’t that what life is all about, anyway… learning? :)
August 5, 2014
Happy birthday… to ME!
It’s a big one, too, as I start my 5th (!!) decade of life. While many people run the other direction from 40, I see it as an opportunity to start bigger and better projects than ever before!
Over the past few weeks, I’ve been contemplating the things I’ve learned in my first four decades… and what I consider important. I’ll share them with you.
- It’s important to have good friends. It doesn’t matter how many. Really, as long as you have one good friend, you’re good to go. I have one best friend who I can always count on.
- It’s astounding the number of people I talk to who tell me “I’ll do that one of these days” when I talk about my travels. One of these days should be now. You won’t see everything in the world. but prioritize a few things and start working through your list.
- I found a quote recently (I’m paraphrasing, terrible memory for these things) that said something like there are some people who are so poor, that all they have is money. The past few years, I’ve discovered how “wealthy” I am. Thank you to the riches in my life.
- As is often mentioned, we create our own happiness. We are individually responsible for our own success, and the choices that we make. “Success” can sometimes be a big, amorphous, scary thing, but it can also be broken down into smaller steps. Take a little time each day.
- And speaking of taking a little time each day, even a small amount of exercise each day works miracles. When I’ve mentioned to acquaintances about a “big birthday” coming up, the number who’ve thought it’s 35… and it’s not just genetics. Put a little into the exercise bank, as well as the happiness bank, and your body will repay you a million-fold.
I could keep going and going… but I should save some of the pithy statements for my 50th birthday! :)
Anyway, keep living (and I mean TRULY living, not just existing), laughing, loving… and being unabashedly YOU.
Here’s to another great decade!