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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“I’m melting! melting!”

The first time I experienced M.S. fatigue, I was living on the Peninsula in the S.F. Bay Area.  It was exhaustion like I'd never known.  I remember trying to fold my clean laundry in a laundromat and having to stop and rest after one or two pieces at a time.  

My arms felt like lead, my legs felt like they were shuffling through quicksand and my brain was so, so foggy.  And sleeping didn't help although getting out of bed each morning was a battle.  The exacerbation lasted a few weeks.

As with all my symptoms, it seems that once I've had it for the first time, the subsequent times I get it don't seem as severe.  In reality, I suspect that they are as severe but that I become desensitized to them.  Or maybe it's just never as scary ever after.

In any case, I think I am in the throes of an exacerbation, and the current heat wave isn't helping.

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Chemo and hot flashes

Starting in February 2006, I did a 6-month chemotherapy regimen to attempt to weaken my immune system.  I went once a month and sat for a 4-hour IV infusion of the drug cyclophosphamide (brand name Cytoxan®).

I was warned that the treatment might cause hair loss, nausea, and push me into early menopause.  I was told not to have children (as if!) from then on.

Sadly I didn’t feel much different in the end.  My energy was probably better; I can’t remember now.  I appreciated the attempt and would’ve been overjoyed if my disease was significantly lessened. 

My morning routine now is to get up and work on my computer upstairs until my husband gets up and makes his way downstairs for his morning ablutions including making coffee. 

I lurch downstairs and settle into a chair facing the T.V. and turn on the news.  OH heats the “corn bag” for me in the microwave, fixes me a cuppa joe and then gives me the warm bag and my loaded auto-injector.

[Digression: when I started doing daily injections of this M.S. therapy, I was advised to ice the area before the injection.  But Owwwwwwwwwwwwwww!!!  I have since found that heating the area before and after makes it much less painful. I was careful to ask around to various healthcare professionals before changing from cold to hot but no one had heard of any reasons not to.]

Despite shots of this med, my disease is still progressing.  Oh, and now I’m starting to have hot flashes.  Sigh.

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Overcast is good

It’s been almost a week since my last post, so I feel like I should write something. The truth is that I’ve been feeling a little under the weather. Literally. Because even as California has had record-breaking heat and some out of control brush fires, where I live has been overcast and socked in by heavy fog, which is good for me physically but not emotionally.
As with a lot of MSers, heat quickly “melts” me: it strips me of my strength, my energy, my vision, my balance. It makes me dizzy and nauseous. And I even suffer when I’m on the second floor of my house (heat rises) cleaning my bathroom or rearranging my closet. I can only work about ten minutes and then have to sit or lay down about twenty minutes to let my “core” temperature cool down. Not very efficient.
So overcast is good, but add it to a bit of a lingering headache and some mild tummy upset and I just want to curl up in a blanket with a cat and a mystery novel and a cup of hot tea. Ah, work: as my friend D. says, it’s so inconvenient!
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