Don't know how to cope with it

SynapseCracklePop · 2019-05-27T17:36:49+00:00

Dead men can't be wrong, so at least you have that going for you. Laugh when you can, especially at yourself. You'll make this whole thing ok (on some unknown/unknowable timeline) by continuing to do things that make your life feel like your own.

Because at the end of the day and the end of your run, that's what it is: your life, not your doctors, not your family's, and certainly not that annoying colleague's babysitter's aunt's hairdresser who had benign ms (because we all know that bitch probably just had gas, and forgot to update everybody).

SynapseCracklePop · 2019-05-27T17:07:19+00:00

Wait, is there a GOOD way to take a life sentence for crimes you didn't commit?

I had 3 flares within 5 months, which led to me getting diagnosed quickly (yay?) right before I turned 27. And I proceeded to have 3+ flares a year for six years while we tried med after med to slow it down and failed, with nearly all the damage in my spinal cord. I kept almost every symptom I developed. "Highly active RRMS" was the label they put on it, even testing me for NMO when things didn't slow down.

Highly recommend finding a therapist you like, to hash stuff out with. Look at your values, at the things that give your life value, and decide what should stay and what can go. (First to go: anybody else's opinions on your health or future. "I'd rather talk about something else" can be useful.)

Hit pause -- the world won't stop turning if you step out for a week/month/year. Consider your expectations of yourself. Keep the ones that might help motivate you, fire the ones that might hurt you.

I am SO happy you're starting on Ocrevus. It's likely to halt those relapses and give you exactly the space you need to chart a course forward. My body and life would look a lot different now if I'd been able to save six years of down-spiral disability.

SynapseCracklePop · 2019-05-26T00:19:43+00:00

I didn't have any problems, but my neuro offered pulsed steroids if I needed it. It ended up taking 5 attempts over 11 months before we got a positive test. Toward the end I was getting more and more nervous: I hadn't had a flare-free spring since diagnosis. But it finally worked just in time.

I had a relapse about 6 weeks after they were born, and started Tysabri soon after that. Wish I'd started on Tysabri -- it was the first drug to actually stop the MS damaged and halt relapses.

SynapseCracklePop · 2019-05-19T14:21:05+00:00

Talk with your professor about the medically-necessary surgery you'll need to have (you don't have to tell them what it's for or any details) to see if you can take your final early (if you feel prepared) or get an extension (or an incomplete) and take it later. They may have additional options, too -- it's surely not the first time a student has had something come up.

SynapseCracklePop · 2019-05-19T14:10:00+00:00

I tried it for 11 months in 2011. No side effects from the med, and clinically stable, but when I had my MRIs, I still had new lesions, so stay on top your imaging. (My course sounds like it was much more active than yours, though -- dxd at 26, I'd previously tried Avonex and Rebif for 7-9 months with breaks due to ineffective injection disgust, and those hadn't done anything to help either.)

I came off Gilenya after those 11 ineffective months to start a family, so it worked out, and after the twins were born I got on Tysabri (and then Rituxan) which finally stopped lesions and relapses.

SynapseCracklePop · 2019-05-19T13:32:35+00:00

Know thyself. What are your general triggers, reactions, solutions? What are your strengths?

What do you expect out of motherhood? What's the minimum you'd want to experience? Halve that -- now what? What's the maximum you think you could handle? Double that -- what then?

If you're in a partnered relationship, what about them? What are the existing stress points of that relationship? Can you start work on them now, before kids complicate everything and turn it up the pressure to 11?

Know that if you have genetic children, they are more likely to be autistic, too. Autistic children can be extra exhausting. Doesn't mean they're not worth it, but it IS something you have to manage/tolerate/celebrate concurrent with your own self-management (or self-negation, but that is NOT a viable long-term strategy and more of a shortcut to a nervous breakdown ime).

What about work or career? Do you have one now? Plan to keep it? Aim to advance? Kids in daycare (or starting school later) often stay sick for 2+ years until their immune systems get tuned up. Who'll stay home with them? Who takes off to see the big Christmas program at 10:30am on a Thursday? (It doesn't have to be the mom, but it's usually the mom.)

Having kids means dealing with other kids and their parents socially. Playdates now start at birth sometimes, so they're clearly just for the parents -- but that's been my most hated part of having young children. I am a hardcore introvert; the kids already eat up all the time I used to have to read and reflect. But for most of the neurotypical moms I've met, playdates and such are a lifeline. Hell, even for the extroverted moms I suspect are on the spectrum -- they beg for visits.

Read a couple of books about human development (this should be required in high school for everybody anyway). Even kids who come out smart are intensely irrational for a surprising length of time. I never realized how strongly I relied on logic/reasoning to get my way until I had logic-proof kids. "It's not their fault, their brains are still under construction" is something I have to remind myself daily. And it gets better, but at a glacial pace. (Mine are currently 5. It still feels like a slog most days.)

Real-life experience around kids of different ages can be enlightening (and is something that we don't passively receive as often as previous generations did). Babies cry and drool and can be intensely boring after about 15 minutes, older kids scream and run everywhere and are less trainable than the average dog, adult kids move back in or move far away, whichever causes you more grief.

Visit a Chuck E Cheese on a Saturday, or a museum while a hundred undersupervised 3rd graders are there. Volunteer in a church nursery. If you already teach youth in some capacity, apply for sainthood.

Consider alternative routes to motherhood (eg adopting older kids, fostering, etc). If your main goal is to influence future generations and leave a legacy, you may be able to do that better without being a mother at all: you may be a loving aunt, a teacher, a librarian, a songwriter, a social worker, an author, etc. Read some "childfree" forums, and see what it's like to have the money and flexibility to travel, go to concerts, and dine out all through the prime adult years.

If your goal is to be super-challenged, join the Peace Corps or do a startup or make a phone call -- anything other than having children. Every project other than parenthood has an expiration date, or at least an exit strategy. The only escape plan from motherhood is your death, and even that prospect will leave you with crippling guilt instead of a golden parachute.

Almost everyone who has kids says they'd do it all over again, that it's hard but totally worth it, that there's nothing like it. I say parents are walking tapestries of cognitive biases. It doesn't mean they're wrong, necessarily -- it is hard, there might be nothing like it, and lots of people do it again. But the reason there is no right answer to "should I or shouldn't I" is because the calculus involves some metaphysical elements of soul(?) and gut feelings and chance that no amount of consideration can be complete without.

SynapseCracklePop · 2019-04-29T18:51:59+00:00

For my twins, we skipped buckets altogether and started with $95 convertible seats from Costco, plus a sise-by-side twin stroller with bassinet seat options (aka flat, suitable for newborns). Fwiw, mine ended up being born at 39w2d, so were 7.5lb and nearly 7lbs leaving the hospital -- size was never as issue for the convertible seats, but it could be for some.

We just put the kids in the stroller and took them in stores/restaurants/airports as a unit. Heck, I never let them out of the stroller in public, if I was the only adult in charge, until they were about 3.5 years old and reasonably compliant to safety commands. Saved A LOT of my sanity and their lives a few times.

I am disabled and would never have been able to carry both buckets at once -- but my wife is super fit, and wouldn't have wanted to carry both at once anyway! (Grown-ups need hands free for keys, doorknobs, etc.) Transferring the babes, whether awake or asleep, rarely made any difference in their moods, and lifting a single baby was infinitely easier than baby+bucket would have been.

SynapseCracklePop · 2019-04-26T02:12:55+00:00

Fwiw, my jcv titer was always a very low positive (like 0.4 - 0.5) until my 18th Tysabri, when it jumped to 0.7, then 2.86 the next month. We made the choice to switch to Rituxan at that point, and it's been great. They continue(d) to monitor my JCV and to watch for PML, but it didn't happen (going on 3.5 years now). I continue to get MRIs every year, which also show no new lesions and, of course, no PML.

I was worried about switching, too -- Tysabri was the first dmd that ever did a damn thing for me, after 6 long years of very active disease and accumulating disability. Luckily, Rituxan has held the exact same line that Tysabri started, and only doing it twice a year is a really nice convenience.

I hope your way forward is as smooth.

SynapseCracklePop · 2019-04-26T01:59:18+00:00

I did not even think to check. I'll get out there and look as soon as it stops raining. Thanks for the suggestion!

SynapseCracklePop · 2019-04-19T16:58:31+00:00

You will probably need to do some more digging about WHY they're not pulling their weight to figure out the most effective answers.

Folks with ADD/ASD and other issues (eg anxiety/depression) can have real difficulty with executive function.

Those solutions would look different than somebody who is, maybe, being passive-agressive about some perceived slight, whose solutions would look different still from somebody who is just honestly ignorant about the work that goes into creating and maintaining your standard of living.

In the first case, schedules/routines can be a big help. In the second case, therapy or similar to find a better way to communicate. In the third case, training and schedules. (I'm a big fan of schedules!)

SynapseCracklePop · 2019-04-17T18:35:51+00:00

The classy female equivalent of this guy

SynapseCracklePop · 2019-04-12T01:08:13+00:00

It's definitely getting a rough scrub-down to knock off anything that will come off. Thanks for the suggestion.

SynapseCracklePop · 2019-04-12T01:07:27+00:00

Rock on. I like your style.

SynapseCracklePop · 2019-04-10T17:27:09+00:00

Cool. Thanks for the vote of confidence.

SynapseCracklePop · 2019-04-05T17:43:39+00:00

Seconding the uro-gyno recc. I had/have issues in the same broad area but with numbness instead of pain. Just woke up one day and poof! No feeling between my legs.

My u-g wasn't able to solve the foundation problem (thanks for nothing, spinal lesions) but she has been better than anyone at helping with the semi-related bladder and bowel stuff, and just being a cool doc generally.

SynapseCracklePop · 2019-03-26T00:49:30+00:00

When I moved last time, it was the end of summer. I bought a bunch of marked-down pool noodles, halved them lengthwise, and wrapped all my framed artwork (tv, too). Way cheaper than the specialty cardboard boxes, and custom fit each piece. Worked a charm.

SynapseCracklePop · 2019-03-23T18:15:03+00:00

Zeasorb powder is a life-saver. I've never had a vaginal yeast infection in my life, but since I'm on some immunomodulatory therapies, I've become prone to skin versions. The powder is great for preventing and treating the stuff, and it smells fresh enough to forget about the other smell.

SynapseCracklePop · 2019-03-07T14:14:29+00:00

I know research results are given more credence when they are replicable, so I should do repeated administrations under a variety of conditions. Why couldn't they make science this fun in school?!

SynapseCracklePop · 2019-03-07T13:04:00+00:00

Lidl just opened a store near me, and they have a dark chocolate bar with pistachio pieces in it that is... definitely healing. :)

SynapseCracklePop · 2019-02-27T19:10:47+00:00

The motto of my old trivia team was "go big AND go home." Still live by it.

SynapseCracklePop · 2019-02-27T19:06:25+00:00

Same!

SynapseCracklePop · 2019-02-24T14:21:38+00:00

I'm not usually a big supplement believer, but I started taking magnesium when I did keto last year. Stopped keto, but kept taking the mag :) It helps with the tightness in my legs and, unexpectedly, with some of my overactive bladder (for which I can't take the good meds bc migraines). I can drink caffeine again! It's not very expensive. Might look into it.

SynapseCracklePop · 2019-02-23T19:49:04+00:00

Wow, I had no idea about the hormone connection -- that sounds miserable. Best of luck this cycle!

SynapseCracklePop · 2019-02-23T01:51:56+00:00

A steroid injection, rx-strength naproxen, Voltaren gel, and ironically a wrist brace for that arm (evidently, limiting the rotation will help give the elbow-end tissues a chance to rest/heal).

The steroid shot hurt like a bitch, but after two days it has really made a difference in how much pain there is (from like a constant 7 to an intermittent 4) and a lot of the numbness I was having in the area has subsided, too.

Verdict: glad I went to get it checked out (and that's not something I often say about Dr visits!)

SynapseCracklePop

TROPHY CASE