Vintage woodies and my go-bag

A few weekends ago we drove down the coast for the day to visit my brother and his girlfriend.  My parents met us there and we had a little belated Father's Day celebration.

The day was lovely, being out in the sun felt lovely, the food was fabulous: we had chips and salsa, crackers with artichoke dip as appetizers, then my brother grilled fish and shrimp for make-your-own fish tacos served with beer and lemonade shandys. Yum!

After that, with my OH pushing me in the wheelchair, we went to the pier to see the annual car show of vintage Woodies, the wood-sided vehicles that are often associated with the surfing community.

I took a "go bag" with extra underwear and a change of clothing, so when I needed it, it was not the distressing event it could have been.  I felt relaxed and prepared.  And here, I thought my bladder would be my biggest worry of the day.

We got back to their house and had coffee and cake in the backyard under the patio umbrella.  We talked and laughed and I felt so pleased that I could accompany OH on an outing that he was so excited about.

Unfortunately, when we got ready to leave, were actually in the car at the curb even, I suddenly had another episode of explosive vomiting.  In fact, I threw up in the gutter on the shoes that "Mother Hen" had bought me after the last episode.  I scared everyone there. 

OH wiped me off, while my mother washed out the gutter and my brother brought me a to-go cup of water.   Then OH drove me home, promising everyone he'd call once we got there with status.

Feeling miserable for having scared everyone and spoiling the ending to a lovely day, I nevertheless had to have OH pull over so I could throw up once more on our way home.  By the time we got home, I was dizzy and tired.

I was too weak to climb the stairs in our house, so OH had to carry me up to the second floor and get me into the shower to wash the rest of the vomit off and then steered me into bed, where I promptly fell asleep.  The next morning, I woke up refreshed and chipper: my strength had returned and I was able to navigate the stairs in my usual, lurching way. 

In the days since then, I've tried to figure out what caused this and how to prevent it in the future.. 

It obviously wasn't the food since no one else got sick.  And although my vision became wobbly (I really don't know how else to describe the phenomenon), the fact that it did not occur until late in the day, and then I returned to my normal the next day, suggests that vertigo wasn't the primary factor [although, now that I think about it, I was highly susceptible to car-sickness as a child!].

I have experienced wobbly vision after I get over-heated and OH adds that nausea and vomiting is one of the first signs of heat exhaustion.  And while I was not sweating profusely, I deduced that even though I was not aware of the increase in heat burden on my body, the episode was most likely due to the cumulative effect of the heat of the day. 

N.B.  Add water and a hat to future "go bags."

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Advice to the newly reclassified


I personally think the only reason the doctors differentiate between
“types” of M.S. is to give the patient an idea of what is appropriate
to expect. But because of that, there are drugs that are only approved
for one “type” of M.S. so if a doctor wants you to try one you must
be classified as that type. And it really is such an individual, unique
disease: tell J. not to let the label dictate what she is or isn’t
experiencing.


This is a description from an MS Society booklet called “Managing
Progressive MS” that you can download for free at http://www.nationalmssociety.org/download.aspx?id=314


“Progressive MS manifests itself differently in everyone. Whether
your MS is “secondary-progressive” which followed a period of
“relapsing-remitting” MS or “primary-progressive” meaning it has been slowly
progressive from the beginning, it is important to realize that “progressive”
does not necessarily mean severe disability. But it does mean that there are
few or no relapses, and few or no recovery or remission periods when major
symptoms abate.”


Also see http://www.nationalmssociety.org/living-with-multiple-sclerosis/living-with-advanced-ms/index.aspx


With Tysabri (what you called “the chemo”), tell J. not to worry
about the “multifocal leukoencephalopathy” (PML) at this point.
It has been reported in only a few cases and always with people who were
currently taking other immunosuppressants as well. The National Library
of Medicine reports that “there is not enough information to tell whether
using it alone also increases this risk” and that is because it hasn’t
happened.

The Multiple Sclerosis Quarterly Review, published by the United
Spinal Association and the Consortium of Multiple Sclerosis Centers, reports
that there have recently been reports of liver dysfunction and two cases of
malignant melanoma associated with its use. But it also reminds us that although there continue
to be safety concerns, it is still “the most effective FDA-approved drug
for treating” M.S. Tell her to have
her liver enzymes checked with regular blood tests.


I got Tysabri once when it was first approved and was tired but fine (I always
think that except for this “pesky M.S.” our immune systems are
superstars). But the following Monday it had been pulled from the market
because of the initial PML discoveries. In the meantime I had an MRI and
there was little change so my doctor decided not to resume it for me when it
came back on the market. The bottom line is that there are both risks and
benefits to all drugs and also that chemotherapies tend to have less side
effects in recent times.It has really
helped some people.


Also, I can totally relate to being too proud to ask for help. When OH
was in the hospital and I was spiraling downhill, I was finally able to ask my
mom for help. She was so pleased to be able to do something,
so I think it might help J. to ask if she knows how helpless you feel and don’t
know unless she tells you what you can do that she would really
appreciate. My mom washed, folded and put away laundry, washed dishes,
scrubbed the shower and cooked meals for my freezer for months.


Learning to ask for help is one of the lessons this disease is trying to teach
me.

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How I managed

Christmas has passed with not too much drama.  It was nice, low-key and relaxing.  I still have gifts to wrap and give to friends, but am able to do that leisurely (as is always my goal to do way ahead of the holiday.  Ah, well: maybe next year). 

Surprisingly, I managed to stay mostly on the diet this holiday.  Our neighbors had us over for dinner Christmas Eve and we went to my parents' house for brunch Christmas Day.  The biggest temptations were all the assorted cheese-engulfed hors d'oeuvres at dinner and the quiche and bacon at brunch.

Things I did succumb to:

    • Salt (in prime rib, yummy stir-fry vegetables, and half a slice of bacon)
    • 1 piece smoked salmon (salt again, too)
    • crumbled bleu cheese and raspberries on the salad
    • 1 bite of dark chocolate
    • Coffee  (but black and only in half-cups)

How I managed:

I avoided the hors d'oeuvres, drank red wine instead, and ate everything at dinner.  At brunch I had spelt toast with fruit spread, mixed fresh fruit, and a mimosa.

It's been about a month, I do eat regularly so am not going hungry and still have lost some weight, but have not seen a big change in my health yet.  I have, however, seen small changes and that's keeping me focused on the goal of this experiment.  

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