Saturday, May 31, 2014

Gratitudes from an MSer: Top Ten GOOD THINGS in my life right now

I have had a rough couple of weeks, but at the same time, I have not been without some wonderful experiences as well. Time to look away from the train wreck that symbolizes what's been going on in my personal life since mid-May and focus on the great gifts crossing my path.

1. Great children who I don't need to babysit. I know, they are teenagers, but let's face it: most parents of teens are scared shitless every time their kids leave the house. On the other hand, I am perhaps the only parent who slept well last night while my senior was off to the prom in the Big City. You know, I must have raised her right because I did not feel the need to babysit her or make her accountable for her night or shadow her. I know lots of parents who did these things last night: chauffeuring, hanging out at the actual dance, as if by doing so that would mean a better prom for their kids? I don't know... maybe it's because they can't cut those apron ties, or maybe they can't trust their kids to "make good choices," or maybe they are fearful of that business of after parties... who knows? All I know is that I trust my kids and give them a long leash and they have yet to let me down. That's no small thing when you have a condition which generally worsens under the weight of stress.

2. Despite the aforementioned train wreck, I continue to be pleased with the results of my latest MRIs and the way Tecfidera is helping me out as a DMT. Unfortunately, the train wreck began the afternoon following the good news about my MS (non)progression, but I never had a chance to celebrate. Why turn that into a negative? I am planning a celebration of my first year anniversary of taking Tecfidera in June, because I know I have friends who will celebrate with me. Plan it and they will come.

3. Obviously, I have endless gratitude for my friends. My husband is hot/cold when it comes to being supportive, and my children have their own challenges; I can't ask them to do the emotional work of adults. My extended family is going through all kinds of turmoil (re: previously alluded to train wreck) so they can't be expected to hunker down with me. But my friends are always there for me. Always.

4. My job continues to give me a reason to get up in the morning. I just took a credentialing exam and think I might have passed. If so, I can broaden my sphere of influence in ways beyond my work in the lab and even get paid for it. Woohoo!

5. Great weather! I use sunshine as fuel. Warmth improves my mileage. What's not to be grateful about?

6. My meds. All of my meds. I'm grateful to take them, grateful to be able to afford them and to be able to tolerate them.

7. I am grateful that my back deck is all cleaned up and functional again. I have an instant retreat space back there and I have already put it to use and love how calming it can be sitting out there, taking in some sun, tending to my herb garden, having a fire in the chiminea or chatting on the phone.

8. A freezer full of wild-caught salmon. I'm having some of it tonight. On the grill. AWESOME.

9. DVRs and Roku. There are times when I just need to ESCAPE!

10. Solo road trips. I've had to make two round trips since mid-May (one to the Tri-Cities, one to B'ham), and I love the silence and solitude of those drives, especially since the weather was beautiful 3/4 of the days/nights. I listened to podcasts, stopped to take pictures, ate yummy food and just let my brain unwind.

Friday, May 16, 2014

Step right up, get your tickets to some GOOD NEWS...

Today, my MRIs (all 1.5 hours of them, complete with an IV full of gadolinium dye) showed the following:

  • All previously active lesions are now officially inactive (yay)
  • All previously "questionable" lesions are no longer present (yay)
  • I have no new active lesions (yay)

Blood tests will confirm that my body has adjusted well to the Tecfidera; I will have those results by the weekend. Previous tests when I wasn't feeling as good as I am now showed my liver was metabolizing the medication just fine, so it's a safe assumption that my liver is still functioning well and I will be able to continue to use this new oral med, as it seems to be working for me. The manufacturer has proven to the FDA that it is safe to use 4 years out, so I'm feeling great that I might NEVER have to go the route of injectible medications with side effects. 

I will get a neuropsychological screening done this summer to establish a cognitive deficit baseline, and I will review my arthritis and carpal tunnel issues in both wrists also this summer to see if I still need surgery. I will also have my left big toe checked for arthritis or gout and move forward accordingly. 

I also have permission to double my wakefulness medication (modafinil) if I should get hit by a period of super fatigue (like I had last April, which caused me to miss both MS walks I had signed up for, in fact). 

I'm psyched to hear this news, of course, and it means I can let my energy levels shift away from concerns about disease progression so that I may invest more of my focus/attention on my work in the sleep medicine field. I've discovered that the more I work and the more I involve myself in other intellectual pursuits like writing, which don't shine a glaring light on my MS, the less I am stressed by it and if I'm having symptoms, they are barely noticeable if they are present at all. 

And that's what I'm going to leave you with, dear reader, as a closing bit: the less you examine your illness, the less it seems to bite back. I know I am lucky in that I have a mild form of MS which is not physically apparent to people around me, and I know that others with major mobility issues will be challenged to NOT always be thinking about their illness, because being out of balance or lacking movement in an arm or the sight in one eye can be terribly present... but in the end, we still can choose where to focus our attention, and if it's toward things that are life-affirming, positive, and helpful in some way to the community, then how can that NOT be a better approach? 

Thanks to everyone in my life--family, friends, doctors, nurses, technicians, pharmacists, insurance payors, MS cohorts--for buoying me up through this challenging year. And thanks, to, to Biogen Idec, which manufactures Tecfidera. I have been hearing all kinds of good news from my peers who started "Tec" before I did; I am so pleased to be part of the good news community now! 

Thursday, May 15, 2014

One year MRIs TOMORROW...

About an hour and a half in the White Tube of Death (WTD) means I'll be taking a lil' somethin' something'...

We will be looking for the following in my films:
  • Lesions that used to be active but are now smaller and/or inactive (yay)
  • Previous "questionable" lesions which are now smaller and/or inactive (yay)
  • New active lesions (boo)
  • Old lesions that are STILL active and the same size or possibly larger (boo)
  • Previous "questionable" lesions which are larger and/or active (boo)

This will require contrast dye which explains the long time spent in the WTD and which feels, as my friend ES accurately described to me last night, as if you are a carry-on suitcase jammed into the luggage compartment of an airplane.

If I get more yays than boos, then I'll chalk it up to my disease modifying therapy (Tecfidera) working for me (hey, I've adjusted to it--the least it can do is work for me, right?) and overall good management of my disease course through healthy lifestyle (stress management, good sleep habits, nutrition supplements, primarily).

If I get more boos than yays, we might have to go back to the drawing board on the DMD to see what else might work.

But I feel pretty good these days and expect the former, not the latter, to occur. I reallyreallyreally hope I don't have to change pharmaceutical course because that will probably mean going from oral meds to injectables and that's not really in my plans...

Wish me luck!

Tuesday, May 13, 2014

CHAOS MONTH: a 4-week contest to see who is stronger... Me or the MS

Let me give you a bulleted snapshot of the next four weeks in our household. The articles marked with a triple asterisk*** indicate areas where help would be nice to receive, but the odds are only 50-50 that we will get any, even if we ask for it. Red text indicates high stress events; green text indicates... oh heck, who am I kidding... it's all red text!

I will:

  • get my annual MRI (spinal and brain, so about 1.5 hours in the White Tube of Death) to see if my MS meds are working or whether my MS has progressed despite all these meds. Your guess is as good as mine.
  • participate in a grueling day-long neurocognitive test to establish a diagnostic baseline so, in the future, if I lose my mind, at least I can prove it clinically (not really kidding, this is all about qualifying for disability down the pike)
  • find out if I need to get wrist surgery for my arthritis/carpal tunnel issues
  • provide some of the only reliable transportation that my daughter's water polo team ever gets to their far and away games (50-75 miles one way) over multiple days*** (at least I enjoy doing this when I don't have a migraine... but what in tarnation will they do next year without me? Seriously? and I'm not even a captain's mom!)
  • study for and take my sleep health educator credentialing exam*** (I am getting some help but it's really that I don't have any quiet time to even study)
  • prepare to learn an entire new electronic medical records system - which has the added reputation of being WONKY - but must pass proficiency to keep my job
  • continue to work as many hours as I can (schedule has been highly unpredictable since February); listen, not knowing for sure when you are working (until 4pm that day) is stressful, peeps
  • start pulling together all the communications for the sleep society fall conference, including blogging and website relaunch and maintenance (oh sure, Murphy's Law doesn't apply at all here, right?)
  • plan a graduation party as well as get announcements and invites out and create a Brag Board and slide show for my daughter
  • finish two essays related to sleep medicine
  • try to keep up with several blogs
  • complete my sleep health clearinghouse website, which is woefully behind in production

My husband will:

  • perform in several private band gigs as well as our hometown parade
  • travel to Dallas for the annual business conference
  • power wash, restain/repaint the deck and complete other major home maintenance repairs
  • set up for the graduation party
  • continue to address mother's transportation and medical issues*** (we just had her SNF up her services so she will stop calling us for things they can do easily without her needs completely blindsiding us on a daily basis)

My oldest daughter will:

  • complete her last season of high school water polo, which includes wild card and state tournament games covering 6 full days
  • attend the dreaded senior salute/end of season banquet. This should be a positive experience, right? Don't get me started on the debacle that overlooked her as team captain just a year ago, and the heartbreak and ego-swallowing and self-restraint all of us here at home have had to endure over the last 12 months as a result.... Once bitten, twice shy, as they say. I'm afraid that all the work she's done for this team will just result in her getting ignored and unacknowledged like she's been ALL FRICKIN' SEASON by at least one coach. This includes her serving as an excellent leader despite not being picked as captain; being perhaps the finest team player they have (and not the hot shot who is in it for the personal glory); sharing what she learns in separate clinics with her teammates--and it shows, in the games; and recruiting nearly 90% of the current team, quite a legacy. I'm just asking the Universe... just this one night, can she be gifted an opportunity to shine that's all hers to enjoy and deserve? Can it be a chance for her to cry tears of joy, for a change? Everyday has become a bittersweet teachable moment this year... it wears on her, on us. No wonder she wants to get as far away from our small town as possible... her experiences beyond the home team have been positive and encouraging and have made her feel like she matters. Here at the home pool? Not so much. And yes, it makes me angry to see someone get overlooked who deserves better.
  • attend prom (thank goodness she already has a dress!)
  • interview for a scholarship
  • attend the senior awards banquet (at least they will celebrate her accolades there)
  • graduate!
  • start Junior Olympics water polo training in earnest (4 days a week at a pool 50 miles away)
  • pick up her lifeguarding job when polo season is over
  • start physical training to be ready for Div I level water polo in September
  • practice driving and get her driver's license

My youngest daughter will:

  • attend the band end-of-year-banquet (which she also organized)
  • vie for color guard captain title for next year
  • complete another 4-day drum corps camp
  • play in the band for graduation
  • perform the winning show with Winter Guard one more time for the public
  • prepare for a 2-month, cross-country drum corps tour
  • attend a field trip to Wild Waves with Winter Guard

Somewhere in there is the whole emotional underlayer of:

  • dealing with an ailing elderly relative who can't live independently but who won't pay for immediately available services when she can call my husband and ask him to do EVERYTHING*** (by the way, we are not the only relatives that could be caring for her, there are others who just blow off their obligations so they can take their usual 2-3 vacations a year. Yes, I'm bitter.)
  • dealing with the emotions fraught in witnessing my oldest daughter's graduation*** (I can barely even think about this for all the other stuff going on. Yes, I feel robbed.)
  • dealing with the fact that my youngest daughter is going to be gone ALL summer*** (I'm not ready for the empty nest yet and she and I are close as two peas in a pod; what will I do without her?)
  • dealing with the unknowns of having MS*** (I live with this daily, but that doesn't mean it ever gets easier)

As well as the usual and sundry activities of daily living:

  • yardwork*** (getting some help now and the worst should be over soon)
  • laundry (it will lighten just by having one kid away from home)
  • housekeeping*** (gonna start paying for this again)
  • paperwork
  • eating right
  • exercising*** (literally NO TIME)
  • sleeping
  • medicine maintenance

After which I will probably collapse. If I don't before then...

I include all four of us in this overview because, if you are a parent, you know that all that happens to your children eventually happens through you, including the emotional ups and downs, the physical logistics and the problem solving that comes along with it all. Nothing happens in a vacuum, but more importantly, all of our kids' "gigs" are our "gigs" as well, and despite all the things slated to happen over the next four weeks, we will be there for every last event.

Sigh. Still, it's exhausting to even imagine. We have no vacation planned afterward. I am attending a writing conference for 11 days in July which will be like a working vacation, and my hubs will follow suit the next week at a jazz workshop. I will take my oldest to NYC for 3 days as a graduation gift before setting her up in the dorms in upstate NY in late August. If we are lucky, my husband and I might be able to take a night off here or there to go camping. In the absence of that, I hope to resurrect the chiminea and spend as many summer nights as possible staring into campfire.

Please cross your fingers for me that I don't have an MS relapse during the next four weeks. Because there aren't any plan Bs for this kind of stuff.

Friday, May 2, 2014

[Media Resources] Greater Delaware Valley MS podcasts

"Why Everyone Needs a Power of Attorney"
is the most recent program to be
broadcast and archived by the
Greater Delaware Valley Chapter
of the National Multiple Sclerosis Society.
I love to listen to podcasts, especially when they relate to some of my favorite themes or topics, like cooking or creative writing. The podcast/talk radio community was actually the first arena of media I pursued when I was given my MS diagnosis, and it has not been a disappointing journey.

One of the best podcast series I have found for learning more about MS comes from the Greater Delaware Valley chapter of the National Multiple Sclerosis Society. 

These are regular teleconferences recorded live, then archived to be enjoyed by anyone after the event is over. They usually feature one or more specialists in MS or other related fields and they cover, in depth, a particular category, such as "Clinical Trials and Progressive MS" or "Social Security Disability Application Secrets" or "Maintaining Cognitive and Emotional Health While Unemployed."

While their programs serve populations in Pennsylvania and New Jersey, their podcasts can be accessed by anyone, anytime, and for the most part, the content is up to date and relevant.

I have found some really good discussion here that's accessible to anybody who has MS or who wants to learn more about it, and the programs themselves are geared toward a general audience, so there isn't a lot of medical-ese to be confused by. Generally I have found the speakers they use are lively and interesting and personally motivated to do the work they do, so that's a plus.

You can download these episodes for free through iTunes or other podcast hosting services. They usually include a section at the end which is for the live participants to grade the quality of the presentation, so since I am always listening NOT live, three thousand miles away, I know to skip this portion of the end of the presentation.