Independence

~

 Whenever I go somewhere, my first thought is "Can I do it on the bike?"

I have been volunteering for PAWS - Pets Are Wonderful Support, by walking an HIV positive, elderly man's dog on Monday, Wednesday and Fridays.  I use the trike because the dog pulls on the leash and is too strong for me to walk.  I get to "give back" and feel useful to an organization that helps me with keeping my dog and cats fed and healthy.  I wouldn't be able to do this without the bike. 

I brought home 6 bags of groceries on the trike the other day, $104.00 worth of food, bags stacked 3 high, and bungie corded to the basket.  It was a record.  People didn't think I could do it.  I wouldn't be able to do this without the bike.

I ride to the beach, and downtown, and to the Golden Gate Bridge.  To Fisherman's Wharf, and up the highest hill in the city.  To the post office, the pharmacy, the ATM machine, the doctor's office, the hospital.  On Wednesday's, I ride to the Farmer's Market with my friend Jill, from the dog park, even tho I rarely buy anything, because it's more expensive.  I do solely to have a bit of social life with a friend.  I couldn't do it if I had to walk.  She won't do the bus.  Well, she would if I had to, but the point is... I don't have to walk, or take the bus cause of the bike.

Granny Cart

I ride to the PAWS office to pick up my pet food and cat litter, because bags of food and cat litter is too heavy to manage on the bus.  I could use the granny cart, but it's, again, too hard to manage on the bus, and too far to walk.  

I have been using it almost every day for the last couple of months.  Well, cept for when I was in Daytona.  

I cuss and curse how much space the bike takes in the apartment, but at the resident's meeting, I brought up the fact that city owned buildings (such as my apartment building) are required by law to provide bike racks, and a motion was made for me to research that law, and to scout out potential SECURE spots on the property for a bike rack.  I need the space because I found a couch (on the street and perfect!).  I need a couch if I'm to have a "dating" life.  I really don't think it's proper to entertain on my bed - I'm just not that kind of girl anymore! 

When I'm having pain days, the space issue starts to get to me so that I don't have to deal with the pain so I think about selling the bike. 

But the fact is this.  It always boils down to staying out of the wheelchair.  It's the only thing that keeps me physically moving.  I can ride the 10 mile round trip to the beach, but I can't walk more than 3 blocks.  I might get off the bike after 10 miles and not having any legs, but at least I've moved, gotten somewhere, done something, exercised. 

Plus I just plain love it. 

But maybe more importantly... I don't feel disabled because of the trike.  

~

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Sleep, sleep, how I love thee...

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A couple of days ago, I went to a volunteer orientation for a place called "Muttville".  It's a rescue center for senior dogs.  I ended up staying for about 5 hours, cause it was so fun.

But I had to leave Annie home, because no "stranger" dogs allowed in case the senior dogs are carrying disease.  Last week, I took Annie to the vet, to update her shots.  I'd forgotten that the rabies shot and whatever the other one/s are... are now done every 3 years, so she was fine as far as shots were concerned.  Except the bordedella one, commonly called the "kennel cough", so she did get that shot.  I don't want to bring any doggy diseases home.

So I was Annie-less for a good part of the day.  There's a bus stop on the same block where Muttville is located, so it was a very short walk - that wasn't a big deal.

There were 2 others being trained - a guy with no experience with dogs, having never been near them even, and another lady with an Akita at home, so she has experience with large dogs.  

We walked approximately 15 dogs, taking them out in two trips.  I wobbled some, but it was fine.

However, later on, on my way home, it was not so good.  I fell between 5 to 7 times.  Twice were flat out, straight down on my face.

So today?  And the day before?  Absolute flat out on my back in bed all the damn day long.  I feel like I was beat up by 3 pit bull dogs, and left for dead in the street where a tank then rolled over me.  Even my stomach muscles hurt.  And this unfamiliar muscle between my shoulder and shoulder blade.

It made me realize how very much Annie does for me.  It seems so simple - to walk.  All I need is the touch of either the wall, the handrail, the leash with someone at the end of it, the the elbow on a human walking with me.  Somehow, it's a peripheral thing - touching something grounds me, however light it is. That's why she doesn't have to be perfectly trained - all I need is for her to walk like a lady, and I'm good.

I guess I just have to realize that any assault to my body is a trauma.  A fall is not just maybe a skinned up knee and a bruise here or there.  For me, it's a full-on flare-up of stupid symptoms.  And... it's 2 days where I can't do anything with HeWhoLikesMe, and it makes me wonder how anyone can like someone who disappears from life on a regular basis.  He's leaving town in a couple of days, so I may have to pull myself up by my boots sort of thing in order to spend time with him before he leaves. 

I don't understand how I can sleep so much.  I really don't.  How can a person sleep 20 hours a day and still feel sleepy-eyed tired?  I get the physical thing with my body, but you'd think my MIND, my BRAIN, would feel like ... watching TV, at least?  

MS, how much do I hate thee, let me count the ways...

Some other day.

~

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MS attacked me in a different way today

Yesterday was not a good day.  Even tho it looked like it for the most part, cause I'm good at hiding what's bothering me if you don't know me very well, which is kind of handy in a place you're fairly new to.  Unless you live with me.  As Michael can attest to.  He received a good blast of my anger, which I later apologized for - one thing about him... he doesn't ever seem to hold a grudge.

What's wrong?

Someone likes me.

We've gone on 2 or 3 "dates".  The quotation marks are because it makes me uncomfortable to use the word "date".  So much easier to say "Going for coffee" or "Going for a walk" or "Want to run an errand with me?"  It sounds so much better.


He does a lot of things right.  Number one is treating Annie right, as in not ordering her around or not petting her when she's working.  At heart, she would prefer to belong to a man, and so the male voice is something she responds to, when it should be MY voice she needs to be paying attention to.  Also, when she's working, she can't seek attention from another, such as petting, and most people (those who like dogs) will automatically start petting a dog who walks up to them.

He seems to be a gentleman, helping me on/off the bus, letting me go first, opening doors, etc.  Pays for things.  Tells me he enjoyed our date the next day and asks how I am.  Makes it clear that he likes me.  Because I am "emotionally strong" and "a lady"... (even tho I swear like a sailor).

But he's moving too fast, or he would be if I let him, and I am out of practice on ... everything.  Plus... to be blunt - my pain meds have taken away all that he would like me to be interested in, if you know what I'm saying.  I guess that's not exactly blunt, huh.

The question arose... how do two fat people do it?  Which one is going to sacrifice their computer and Google "How do 2 fat people make love?".  Not me.  

All that is manageable.

What I'm REALLY struggling with is Dating with Multiple Sclerosis.  Imagine that. 

My routine is messed up when he calls and says let's go to the beach, and who can say no to that?  I don't WANT to say no.  But I literally HATE leaving the apartment.  Except for the dog park.  I've got the dog park down pat.  Leash, poop baggies, Chuck-it, ball, and Annie.  But God forbid if it rains, because the decision between a raincoat or an umbrella tears the whole thing apart, and the ball is forgotten, or the poop baggies or the Chuck-it. 

I've noticed an increase in my memory problems, and pain levels, and energy levels.  Especially my memory.  Routine is everything.  Don't hang your coat and cover up my purse hanging there too, cause it will make me forget my purse.  Don't say a word to me when I'm getting ready to go somewhere, cause it makes me read the clock wrong.  Don't hand me something to put away if I'm talking, cause I'll put it down somewhere and then won't be able to find it when it's needed.  Like the appointment card for the eye doctor sometime this week.  Don't look at me wrong, cause it'll make me forget what I'm doing next.  Don't look at me right, for that matter, cause it will make me nervous, and wonder what the hell I'm doing.  Things that happen when you live with someone.  I knew it would be a problem when Michael moved in, but I figured I'd adjust and build a new routine, but it hasn't happened. 

I realize what a bear I am with Michael, and I think about being in an actual, real live relationship.  The truth of the matter is... I feel safer living by myself cause there's no one there to mess me up.  I feel less disabled when there is no one there to see how bad it really gets.  I feel glad there's no one there to hear the constant verbal diarrhea of pain utterances that flow from my mouth.   I feel calmer living by myself cause there's no one there to do something horrible like de-rail my entire day simply by being in the bathroom when I NEED TO PEE GET OUT GET OUT GET OUT.  I feel better living by myself cause I can control my environment and there's no one to blame when the environment doesn't work right.  I actually PREFER not being a bitch, as it turns out. 

Yesterday, the self-hatred of the MS almost sunk me to the level of depression I was in when in Idaho.  Only because of the happiness I feel in San Francisco, do I realize how terribly black it was back there.  And for several instances yesterday, I felt it again. But I actively fought it by getting out of the house instead of going back to bed.  As always, the city always charms me. 

The pain doesn't help.  It confuses the issue.  Is it the pain that's running the show, that makes me so short-tempered and quick to jump down someone's throat?  That makes me so damn forgetful?  That wears me out so fast during the walks with a man who clearly wants to hold my hand ... but doesn't cause I'm putting out the vibe "don't touch me"?  

Or is it the fear for anyone living with me?  Which is really different than the fear of living with someone.

If no one is there... I can't jump down their throat.  

~

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There's no Need to Fear... Underdog is Here

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Today was a bit sobering.  I had a billion things to do, and a schedule to keep.

Annie and I walked the 6 blocks to Walgreen's, to put some money on my Clipper card.  When you hear the double beep on the bus, it means there's no more money on your card and you're very regretful about being so judgmental about people who get on and don't pay.  I soothe my conscious by asking the driver if there's a Walgreen's on his route.  I used a gift card that a friend of Michael's sent me.  Thanks, Joanne!  He needs to make more friends like that...  :-)

I also needed a printout of how much I'm paying for my meds, which is not very much at all.  Five dollars is the most I pay in co-pays.  Yesterday, I had a neurology appointment, and am going to start Copaxone again... and paying 5 bucks for a medicine that costs between 4 and 5 thousand bucks a month is a miraculous thing.  Not gonna complain.

Speaking of the neurology appointment, we picked up where we left off last March, when I had a spinal tap.  Somehow, I fell thru the cracks and haven't seen a doctor for MS issues since last March - mostly my fault because I didn't follow-up, but they didn't call me with what they were spose to do either.  We left off with needing a follow-up on the results of the spinal tap, needing a spinal MRI, and seeing a specialist.  I was sick to death of appointments at that point, and then Michael moved in, and my mind was elsewhere.  Like how to make more space in the apartment.

So, now I know that the spinal tap shows that yes, I have MS.  I'm re-starting Copaxone, IF Medicare/Medi-Cal will cover it - she wasn't sure if it would.  The specialist is scheduled for February.  Someone will call me to schedule the MRI on my spine.  I'm re-starting Occupational Therapy for helping me with walking and not falling.  I fell 3 times yesterday when getting ready to go to the doctor.  She gave me her email address, and told me to be VERY pro-active by emailing her to remind her and to make sure I don't fall down the crack again.  There's a whole lotta falling going on around here...

Back to today.  I forgot to get quarters for the laundry at the bank right next to Walgreen's.  So much for being organized.  We walked back home, and collected the free food box for my neighbor down the hall, cause I am his "proxy", which is a fancy word for someone who does something for someone else because they can't for whatever reason.  Then I cancelled my appointment at 11:30am, cause I was over-whelmed with too much to do.  It's for volunteering at a rescue for senior dogs.  I decided to wait till I get Annie's shots up to date, so that I don't bring home any diseases to her.  That's scheduled for next Thursday, and it's FREEFREEFREE cause of P.A.W.S.  !!!  Tomorrow, I have a training for volunteering at P.A.W.S. at 10:30am. 

Back to the REAL reason for today's post, for heaven's sake.  I finally went to the Apple store to test drive an iPhone because I'm losing my eyesight, and need a phone that talks to me, and does texts to voice and voice to text, etc.  Before I left tho, I got on the computer to find which bus route to take, and I couldn't see the text on the screen.  I couldn't see the text on my phone.  I couldn't see the text on my transit map.  So I had to call Michael, hoping he'd know which bus to take.  The J to downtown.  Okay, I can do that.  As I waited for the bus, I was freaking out about my eyesight.  Not being able to see the computer was new.  I also can't see the menu on the TV, which is about 8 feet away from me.  I could see it a week ago.  I can SEE, but everything is blurry to extinction.

So today was the first day I really realized that there's a problem.  Knowing it and accepting it is a whole can of worms I don't want to deal with, but it's kinda in my FACE and won't go away.

Next thing I know, Annie is staring intently down the sidewalk... her MICHAELMICHAELMICHAEL LOOKLOVEYIPPEE HE'S HERE and she forgets she's MY service dog.  He had come from the library, and knew where'd I'd be cause he's the one who told me which bus to take... He said he'd go with me, which is unusual for him.  I normally am fine with doing stuff on my own, and don't need help, but today, I felt so relieved to not be alone while I was going blind right before my very eyes...  since he came out of nowhere, that's where I got "There's no Need to Fear... Underdog is Here".  That's what it felt like.  He's got my back and I sooo appreciated it.


So we test drove the iPhone 4, the 4s, and iPhone 5.  We have a winner with either the 4s, or the 5, which means it's not a free update.  The iPhone 4 would be free, but I need Siri and after talking to her for awhile, it because clear that she is going to be my best friend.  I could also magnify the text, keyboard, and icons large enough so that I could see them.

We also test drove the Samsung Galaxy Note 2, which I LOVED the size of, but it didn't have Siri, and the keyboard was too small, the text didn't grow big and I couldn't see the icons well enough to know what they were.

So... the iPhone it is.  But it's not free.  My upgrade applies to it, so it's not full price, but still pricey for me.  We shall see.

~

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Farmers Markets. Who knew?

I had the best time this past Sunday!

One of my dog park friends, Zill, and I went to the Heart of the City Farmer's Market. And I was FLOORED at all the great looking produce for GREAT prices!  I've been to a couple of other farmer's markets where the prices were more expensive than the grocery store.  Plus they didn't take food stamps or debit cards.  I pretty much never carry cash.  So my belief that I would be able to eat cheaper in San Francisco because of the corner markets (where the produce spoils very quickly), and the many farmer's markets were expensive didn't pan out.

I told Zill that I couldn't give a definite answer until the night before, and even then I might need to cancel Sunday morning, depending on this shit disease I may have mentioned once or twice.  I wanted to walk in order to give Annie practice with her new harness, but remembered that I never want to go thru that horrible fatigue phase ever again, so I rode my bike.

Have I mentioned that the bike (trike) is making a HUGE difference in my life?  Today I made it up the slight hill on my block, all the way, without having to get off and walk!  It's easy to gauge one's progress around here... just pick a damn hill!

Anyways, Zill walked, and I rode my bike next to her, and I had so much fun.  I was overwhelmed with the amount of selections - even the fish was priced well within my price range.  And walnuts?  One pound for $2.50!  It's over 8 dollars at Safeway!

I found out that this particular farmer's market DOES take debit cards and food stamps.  By the way, whenever I say food stamps here, cashiers look at me confused.  It's called and EBT card, and works like a debit card, only for food.  Food only, too.  No toothpaste or cat litter.  

It's a good ride on the bike - mostly no hills at all, and if I went by myself, it'd take about 15 minutes to get there.  So it's not like it's an all day ordeal.  I'm just so excited. 

My son strongly believes that diet has something to do with my MS flare-ups, and after the fatigue one, for the first time, I want to track my diet and symptoms to see if is a factor.  But of course - just eating better will improve my health overall, duh.


I got up at 8:30 this morning and rode the bike around and threw the ball for Annie, before the heat comes.  There was a "heat wave" of 2 days.  Still makes me laugh.  But for me, anything over 70 degrees is too hot for me, so the earlier I can get out, the better.

I feel like I'm actively take charge of this shit disease I may have mentioned before.
~
Hanging in there,

FatGirlonaTrike@gmail.com

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Of Course. I Spoke Too Soon.

MS is always one step behind me, breathing down my neck, waiting to grab hold at the slightest mis-step.

I feel like shit again.  Day two.

The mis-step?  Sleeping with a blanket cause it's cold.  Even so, knowing that I over-heat at the mere thought of sunshine, the blanket covers only my upper body.  As long as my arms are covered, I feel warm enough.  I use only one corner of the blanket.

Evidently, in my sleep, I covered up my whole body, even my feet.  Covering my feet is a big no-no.  Might as well just send me to Over Heat City as a permanent residence.

I woke up warm and cozy.  But I had to use the bars on my hospital bed in order to get up and out of the bed.  It's about 10 steps to the bathroom, and I fell.  Sleeping warm made my legs into wet noodles.

I spent the day in bed, worn out from sleeping too warm because it was cold.

There's no winning.

It's always there.

Behind my back.

Waiting.

~

Hanging in there,

FatGirlonaTrike@gmail.com

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This and That

If I were someone who cared about me, like family and friends, I would be VERY irritated with me right now.  It seems there is no happy medium when it comes to my communications with ya'll.  If I'm not blogging, Facebooking, emailing - then you probably deduce that I'm either doing really badly or really good.  Cause when I'm doing really good, I'm all out and about and too happy.  I've never written during happy times.  Plus, you can't trust me - I lie about how I'm doing when it's really bad.  I promised my kid that I would stop doing that.

I've been doing really, really, really well for the last .... 4 days.  See, now I'm freaking out - I probably just jinxed myself!

I've quit sleeping on park benches, under the bed, all day and all night.  But on the days I have medical appointments (2), I didn't sleep the night before.  I've realized I'm a bit obsessive about GETTING to the appointments.  Not because of the bus, or where to go type of stuff - it's the worry about whether I'm understanding the Time.  Time as in the clock.  Am I reading the clock right, and am I understanding the appointment reminder sheet correctly?  Has Annie peed and poo'd appropriate amounts that I don't have to worry about her needing to go during the outing?  How many extra minutes should I plan for that?  The clock and I have issues - the same issues I have with money.  I just don't "get" numbers - they don't process well in my head.  My sister had to take over my money for me cause of it.  It carries over to conversations too.

Me:  Has anyone seen CrazyZert today?  Cause he destroyed the shrubbery of someone up the block and they called the cops on him.
B.Martha:  His case worker was here and made him take a shower this morning.

A few minutes pass and we discuss him more and other things.

Me:  So, really, I'm serious.  I'm worried that they may have taken CrazyBert to jail, so has anyone seen him?
B.Martha:  ummm, duh.  What part of "his caseworker made him take a shower this morning did you not understand?"
Me:  Oh.

I just don't put 2 and 2 together.  It's not about not listening, because we talked about how much he needed a shower, but he wouldn't allow getting his hair shampooed, and we needed to be careful cause he might have lice at this point, blah blah blah.

I just don't process things if it requires putting 2 and 2 together.

ANYWAYS, I digress.

I am doing TERRIFIC.  I've been riding the trike everywhere, and it's an answer to a prayer all of a sudden. I finally figured out that I could raise the seat - and it's soooo much easier!  I've got some power in these legs after all!  I've been riding it with the pedals way too short.  I couldn't believe the difference.

My dog park friend, Zill, told me yesterday that I was doing as good as she's ever seen me before.  Today, I walked down the rail-less stairs in the park like a normal person would - left right left right one step per foot, instead of left right each foot each step.  Hmmm.  I wonder if that made any sense?  I did hang on to Annie, cause hey, I'm not stupid.  I did a dance of victory when I reached the bottom of the steps - inside my brain.  I haven't been able to jump or do anything that requires two feet off the ground at the same time in a very long while.

                                


Yesterday, the news anchor asked the weatherman if we were going to get a break from "these extreme temperatures".  Extreme meaning 2 days of almost 75 degrees.  !!!  ???  I laughed out loud.

I feel physically strong.  Which is very, very rare for me.  I've done the trike for the last 3 days, but today I decided to walk cause I felt so good.  But I stayed in the shade, and I only did half of the park - cause I don't want to OVER DO IT.  Dumb f*cking words.  Yesterday, I biked (triked?) 6 blocks to the post office to mail off baby gift to Zusti.  (I've decided to disquise my real life friends with the letter Z cause I can never remember the fake names I used to use).  Little baby Zate is 4lbs as of a couple days ago!

I'm so excited.  Annie's mobility harness is spose to come today.  I left the FedEx man a love note downstairs on the gate to call me cause I am home.  Last time I made a point to be home for delivery, they didn't call.  Just left a note on the gate that they would try to deliver again the next day, so I spent 2 days waiting for the dang thing.

It's here!  And omg, is it wonderful.  Sooo much easier.

Annie's first day with the mobility harness

~

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Dover, an Announcement, and a Random MS Factoid

One of the frustrating things often said to me is "Yea, but that's just getting older, too", if I'm commenting on some such symptom or other.  It feels like my very real frustrations are being negated, and that I have no right to be complaining because, after all, we're all getting older, right?

New research suggests that MS'ers lose functions (nerve loss) (affecting what I take to mean all sorts of "age" related factors) (like getting weaker, pee problems, chewing, walking, hearing, seeing) at a rate of 1% a year, compared to a "normal" 0.1% a year.

I've felt like an old lady since the young age of about 35 - not all in my head!

Rot ro... it happened again.

However, he's having a decent day on the track at Dover.

Starting July 1st, in celebrating what I've come to think of as my freedom to be me, I will be starting a new DAILY feature on my blog conducting something very personal, requiring some pre-work, such as redecorating the blog, building some sort of advertisement thingy to put on the trike, joining a ... group of people sanctioning their actions and even business cards.

No... it's not that I've decided to go gay.  I'd be announcing that this month.  Which reminds me, should anyone want to come visit me, the weekend of the 23rd would be the most... educational about what this city is about.  It's Gay Pride Week, and the costumes alone are worth the trip.

I shouldn't say being gay is what this city is all about.  What this city is about is that you're allowed to be Anyone or Anything you want to be and no one will stare at you.  Unless you're an Idahoan who can't believe half the things she's seen here...

Good God, I'm TIRED of all these animals at my feet!

Hank is figuring out a way to keep my coke on ice closer to my bed, since me and the bed are such best friends lately.  He must be independently wealthy, since he doesn't seem too worried about getting a job.  I can't believe I haven't grilled him about it, but I honestly don't care.  He spends alot of time away from me during the weekdays, treating looking for a job LIKE a job.  I also see him just gazing out at the city tho, the same way I did, when I first moved here.  

~

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Fatigue - MS Style

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I've read and heard other MS'ers, and their experiences of fatigue.  Statements like feeling like they're wearing a coat of armor, or that they could sink to the sidewalk and happily take a nap are refrains I've heard several times.  I've used feeling like I'm operating under water to describe mine.

I've also said that the worst symptom I've ever experienced MS-wise is Vertigo - a feeling of constant dizziness and nausea.

Well, I'm here to tell you - this level of fatigue is now the worst symptom I've ever experienced.  If it was always like this, I would not want to live with it.

I've read up on it, and it's said that there is no "avoiding" it by not over-doing it, or getting more sleep, or not exercising at all, etc., it's just ... it is what it is.  Once it hits, it's advised not to over-do it, and to get some gentle exercise, and to try some new meds that have come out.  Also to take some sleep meds if you have trouble sleeping!  That's for people who wake up alot with peeing needs, apnea, etc.  That was not my problem.

I woke up to pee, feed the cats, potty the dog in one manner or another (am gonna teach her to potty in the tub for next time, using the newspaper she was so clever to use last weekend) and I fell right back in bed, nearly asleep the same instant.  One time, I fell on the bed with my arm underneath me, and I remember thinking I needed to move so my arm wouldn't "go to sleep" and get numb, but I was asleep before I could move over.  Or I'd wake up with one leg still hanging off the bed - it hadn't made it up onto the bed before I fell asleep.  Every part of my body was dead weight to myself.  To reach for covers was too much, so my feet would be freezing when I woke up.  But I'd go right back to sleep before I could cover up.  To put on a pair of socks?  Impossible.  Only animals that needed feeding were able to overcome the suit of armor I was wearing - socks or feet didn't count.

If I had been out on the sidewalk?  I like to think I would have found a bench to happily take a nap.  I have an appointment this coming Tuesday with the nuerologist to go over the EMG that was normal, and will bring  this up with her.  It's better, and I spent most of yesterday at the park with poor, pent up Annie, and was fine, but I'd still much rather be sleeping.

~

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Ocean Beach and MS

Remember all my bravado about not being ready for a wheelchair?  Well, my brain may not have a say about it.

Ouch.  A random post I came across.  Weird huh?

Anyways, my physical downfall has caught me completely off guard.  I went to the beach last week on the bike, over 10 miles and felt GREAT.  Then we walked the beach on Friday, being careful not to over-do it, or so I thought.

Annie is holding her own against her boyfriend Oloney.  She's been afraid of the waves, but not any more.  Hank refuses to be pictured on the blog so this will have to do

My hands are confused putting the key in my door.  Lifting the second leg onto the bed requires using my hands to get it up.  The need for sleep is ... the weirdest sensation I've ever felt - it is not possible to deny.

The one night that Annie kept asking to go outside, I simply could not go out my door, without bouncing from wall to wall.  So I set out newspaper on the carpet, and told her to go potty there, hoping she'd understand.  I couldn't even stay awake long enough to see - I fell into bed, arms pinned underneath me, too exhausted to get into a more comfortable position.  When I woke up in the morning, I saw that she had peed on the papers!  I was so proud of her.  And then so sad for her.  I picked up the peed upon papers and hung them over the bathtub, hoping to train her to go in the tub, both pee and poo for my bad days.  My neighbor down the hall has offered to take her outside when I can't take her outside, but I was not able to remember that in the condition I was in.  Everything shut down.  I didn't pee, or poo, or eat, or drink.  I slept like a rock, completely asleep before I turned onto my side.  I texted with my son here and there, about me traveling to Denver maybe but it would not have happened if I got honest with myself.  He called me on Mother's Day, and I lied about having to go play cards cause I couldn't maintain the cheerful I am fine tone, and I wanted to go back to sleep.  I'd wake up to listen to Barf and Annie fighting with each other and go right back to sleep, glad they were occupying themselves.

Hank tried to help, but all he could do was just stand by, and he finally realized there was nothing he could do to help, so he spent most of his time looking for a job.

Why do I lie?  Because I'm trying to convince myself I can do it.  I'm sorry, my son.  When it comes to MS and you, I can't seem to tell the truth.  I don't want you to know how horrible it is.  I don't want to scare you.  I want you to keep climbing rock walls.

I do not think over-doing it was the thing.  I think it was time for a flare-up.  Cause it's over just as quick as it came on.  I walked Delores Park twice today and didn't feel a bit of physical exhaustion.

I've never felt such an over-powering need for sleep.  It may well have been my first true fatigue flare-up.
~

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Highs & Lows of Being Me Part Two

Something has shifted within me during the last week of highs and extreme lows.

 For me to be "showing this"... this shit thing on my body not doing what it's supposed to do to someone close to me (Hank) is ... something.  I don't know why I try to hide it from people - mostly Jeremy, and whomever I was in a relationship but I do.  Part of it is the Single Mother Syndrome, I Did It All For Years and Years, and part of it is not wanting to be a burden, specially to my kid.  For me to be having "old person" issues at the age of 40 was far too soon for me to be taken care of by my kid.  He was just starting his life, and being tied down to a mother who can't walk sometimes was unacceptable to me.  On several occasions, he would tell me about their plans to build or buy a house that had room for me, and I would tell him no - no daughter-in-law wants to share her home with her mother-in-law starting out from the get-go, as much as I loved her. 

As far as relationships, one man left shortly after I was diagnosed.  For other reasons, but my psyche took it personally, unbeknownst to me.  I didn't take it personally - the MS did.  (Snort)  There was someone who seemed to "get it", and he did at first, but it was all an act to cover an incredibly narcissistic ego.  That burned me, but I didn't learn from it for years.  The thought of being with someone simply would not compute after that man.  To be alone was a relief.  I have not been lonely, or sad, or depressed without a man.  Altho... I'm making myself sad right now, at the thought of it being a "relief".  As in, relief from the exhaustion of being sucked dry by someone very, very lovable... yet, basically a con man.  A victimized con man to boot.  Oh, but he could make me laugh. 

There was someone after him, and thank God/Dog? for him, because he restored my faith in men, again without me realizing it till much later.  I learned I was still lovable even tho I had MS.   He was/is a very good man, and because of him, I know what it's like to be truly, truly cared for ... even spiritually, and he was enough.  For a lifetime.  If that makes any sense. 

Part of "getting it", for me, is being able to be helped without it being obvious, being tuned in enough to notice I need help without me having to ask.  That's a lot to ask for, but some people are a natural at it.  Another very, very important part of it is being able/allowed to help BACK.  I can do so little - so it's important to me to be able to do what I can do.  If you don't let me help you back in some way, then we have an unequal relationship, where I am beholden to you.  Some people like that or seem to need that.  Those are the people I don't get close to.

All this to say... Hank is seeing some of this MS shit.  Not the active inabilities cause he just happens to miss those occasions being busy with finding a place to live ... but the aftermath.  The exhaustion and inability to recover quickly.  He's one of those who have an innate sense of how to help someone without being a dick about it.  Or expect anything back for it.  I don't have to explain, and more importantly, don't neeeed to explain.  I just feel accepted. 

Which reminds me, someone once implied that he thought I was a "loosie goosie", to put it politely.  He said it in a cruel way tho.  I used to feel very guilty for that, but I don't now.  You try losing the sensation in your hands and feet, and having it move up and down your body.  It makes you might want to experience "life" a little more in case you lose it altogether forever ... if you know what I mean.  

I'm a firm believer in "You Pick Out What You Need to Work Out" as far as partners.  With my first husband, it was about emotional distance = father issues.  My second husband was alcoholism and sexual abuse = my father again.  Tucker did not sexually abuse me - he made me feel safe enough for the memories to surface and he loved me anyways.  The alcoholism was who he was tho, and I couldn't do it anymore after finally getting healthy about it.  The third long-term relationship taught me about physical, emotional, and verbal abuse, which taught me the rest of the things I needed to know in order to get even more healthy.

Then I got sick.  With the MS.

With Hank... it's the first time in a very long time that ... oh, this is going to sound so awful.  It's the first time I don't care.  Maybe I should rephrase that.  I had learned that it's not my job to "fix" or to do all the work in keeping a relationship going.  But now I know that whether he stays or goes, it doesn't matter cause I'm okay on my own.  I had learned that right before the MS struck, but I didn't have the track record to prove it.  It was all theory.  Now I have the proof, and I know it for sure.  It has made a hell of a difference.  I don't have to use ummm feminine wiles to attract or keep him.  I don't have to work at this.  It's just so damn easy this time.  And I think he's in the same space too, so it's double the easy.

I might even use the walker tonite when we go out...

Oh yes, the walker is also why I am happy and content again.  Isn't that odd?  After the HORRIBLE day where I could not walk, I bought a cheapie walker from the thrift shop a couple of days later.  I've had them before but I gave them away when I moved here.  (Cause moving to SF was spose to cure me, don'tcha know)

I am still able to take the trike bike for grocery shopping and do use it for close-by errands.  But as far as exploring the city?  Impossible.  There's hills here. And wind.  I thought Idaho had the wind, but it shares the wind with San Francisco. 

Altho I did say, I give in, I give up, I've made a decision to keep walking as long as I can.  I'm not ready for a wheelchair.  That physical therapist who seemed to contradict herself by writing out the report that I needed a wheelchair, but that the goal of PT was to keep their patients mobile kept ringing in my head.   And it kept irritating me.  So I did what everyone does when one is irritated by something they cannot solve.

I Googled "walkers".

I have a prescription for this one, and I have to go back to my primary doctor's office to see the social worker in order to start the process of getting it.

It's okay.  Good enough for now.












But then I saw this... and it would solve a few problems the one above has, mostly the tendency to lean over, which KILLS my back.  Also, it goes over bumps and cracks (and MUNI tracks?) with a lot more stability. 

The point is... there's more options that will keep me on my feet for a longer time.  I'm not ready for a wheelchair.  I WILL continue the process of getting one, just in case the funding stops for wheelchairs in the future. 

Walkers are cheaper than a chair.  I'm thinking I might as well try for the Cadillac version.  

So between the trike and the walkers... I've got more time.


~

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My Service Dog is a Thief

~

A couple of visits ago to Idaho, my mom, Annie and I were shopping at Wal-mart.  As we walked towards the registers, I happened to look down at Annie, and she had an Angry Bird stuffed toy in her mouth.  I had no idea where she picked it up.  We could have walked out of the store and triggered the shoplifting alarm that beams a spotlight on you with the siren sounds and blue cop lights spinning around!

As my mom and I laughed over it, this lady came over and handed me a 5 dollar bill so we could buy it.  Of course, I tried to give it back to her, but she insisted, because Annie was so damn cute about it.  So I asked if I could take her picture and Annie acted like a damn fool, refusing to sit up.

Later, over lunch, I got to thinking.  I knew Angry Birds were really popular, and just my luck, the stuffy probably cost 15 dollars!  I looked at the receipt - well, okay, it was 8 dollars.

A month ago, when I had to go back to the hardware store several times before my keys were made correctly, Annie had shop-lifted a Reese's Piece of candy that they had in a bowl on the counter.  Someone was pointing and laughing at her, and I looked down at her - she had a piece in her mouth.  Grrrrr.  There she is, needing discipline/training to not do that, but she's getting attention from others for being so cute and personable.   And she damn well knows it!

This dog.  She always makes me laugh.

~

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Highs and Lows of being Me

This last week has brought on extreme lows and, right now, and for the last 2 days, a deep contentment and outright happiness.

Jeremy had need of his birth certificate.  Years ago, I had got him a certified copy and given it to him.  When he married Dusti, I had given her a notebook with household organizing pages, and put his hospital birth certificate in it under B.  Or maybe C.  Anyways, after they divorced, I saw the notebook and looked thru it.  There was the certificate still.  So I took it back.  Of course - I did not remember this. 

Jeremy text-ed me a picture of his copy the other day with "Notice something?"  They had his birthday wrong - transposed the numbers 30 to 03. 

I had recently gone round and round with the Social Security office about my birthday - they had it in their system as the 31st rather than the 30th, and I was unable to do anything online with my magic disability money because of it.  I found it ridiculous that the Social Security had messed up on both of us - 2 of us in the same family!  And it's not like MS had a role - doing his certified copy was years and years ago, and I had to show them the hospital one in order to get it.  And despite the MS, I have not forgotten my OWN BIRTHDAY.  I'm sure it was just a matter of typing it in wrong in both cases. 

Taking a wild guess, I looked under B in my file cabinet, and discovered Jeremy's original birth certificate!  So I text-ed him a picture of it, hoping that would be proof enough, should he need it.  And off I went to the Social Security office with both copies of our birth certificates - glad to help him solve his problem (I get to HELP! him, for a change), and solve mine too, which I had forgotten about.  Course, once I was there, they told me I had solved mine a few weeks ago... I'd just forgotten.

The security guard at the Social Security office saw me coming and met me at the door with my ticket number (order in which to be helped) so I wouldn't have to walk to the middle of the room to get it myself.  

I was hoping for a good, long wait in line there at the SS office, so I could rest, but noooo.  I was in and out of there within 20 minutes.  Unheard of, according to local lore. 

It took 4 hours to walk .81 miles home.  As in less than a mile.  About 12 blocks.  Something I could usually do in a half hour or so. 

On the way home, shopkeepers came out of their shops with a chair or a milk crate for me to sit on to rest.  They could see me coming thru their windows.  One lady looked in her pickup and then went inside her shop and brought out her dad, who gave me his cane from the pickup.   It was a really cool cane too. 

At one point, while sitting alone on a milk crate, watching people walk and walk and walk by me, I was in tears, overwhelmed with how much this still hurts (emotionally), how much I still cannot seem to get used to it, how much I hate it, how much it's taken from me.  How much it still shocks me when it hits.  How much worse it's getting.  And how it never gives me notice. 

I was glad Hank was not with me.  He was busy finding a hostel closer to me.  He is loving San Francisco as much as I do.

Annie cannot help me with the weakness, and it broke my heart to see how upset she was - she was WORRIED, and it was obvious.  She actually licked my face when I cried - something she does not do to me, and has never done before.

When I reached the lobby to my home, I sat down and burst into tears, out of relief and exhaustion.  There were 2 ladies there, who have never seen me weak.  One was shocked, and the other, whom I've butt heads with before, was the sweetest and nicest I've ever seen her.

I said it out loud.  "I give up.  I give in."   She said, "It's about time".

The next day, I took the "handicap van", a service I qualified for months ago and have never taken.  They take me door to door, and the driver is allowed to help me off and on, and they're allowed to carry up to 4 bags for you. 

He took me to the restaurant where the lady gave me the cane.  I returned the cane and had lunch there.  A delicious Reuben Sandwich.  After dropping  a piece of spinach lettuce and watching Annie eat it, I then gave her some more, curious out of my normal ban of never giving her people food, much less directly from the table!  She. LOVED. it.  She ate it all.  I asked what kind of dressing they put on the salad - some sort of fig stuff. 

I then walked a block down to the bookstore where I had picked up a bag of free books the day before, not realizing that I wouldn't be able to carry it home.  (Sometimes, carrying something actually helps ground me).  They held them for me.  I bought 4 or 5 cheap books and then sat outside their shop, in the shade, to wait for the van to pick me up.  It was another wonder of San Francisco.  Late, but nevertheless - a wonder.  I'll have to use them more often.

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Reflecting on My Trip to Idaho

At my sister's place.  Make yourself at home, Annie

Physically, I was done Johnson by the time the Certain Airlines supervisor gave me a boarding pass.  I needed a wheelchair to get to the gate.  I was afraid to ask him for a wheelchair, pushing my luck about getting Annie on the plane, but I knew I couldn't get there on my own at that point, specially with the long security line, and only a half hour before the flight.  I don't look disabled when just standing there, or for the first few steps, (sometimes it's obvious right away) so while waiting for him to help me after he helped paying passengers, I looked "normal".  I didn't have a problem with waiting - I know paying passengers come first.  I assumed he knew all along that I was non-rev, but when he saw on the computer that I was non-rev, he ordered me to step back so he could help the paying passengers.  I stood down and shut-upped.  (I swear and promise, Jeremy!)

What he didn't see was me getting my luggage from home to the ticket/check-in desk.  I was hunched over, limping and dragging my right foot.  After reaching the airport, I took it slowly, taking an hour to get the the check-in/ticket desk.  By the time he saw me, I was somewhat rested.  I had given myself 4 hours before the flight.  On the second day, I was able to WALK myself to the gate, slowly but surely, because I may have cognitive problems... but I'm not stupid.  I know I cannot hurry.  Jeremy finally understands that I can't make connections if they're too close together time-wise, and he lists me accordingly.  It's a good thing I love airports.  One the second day, I left home a full 6 hours before my flight, and it takes an hour to catch the bus to the train, and the train to the airport.  That meant 5 hours from check in to flight.  I was fine with that, cause I could do it.  And I was afraid of being harassed all over again. 

I hate to write about the symptoms I get and the trouble I have doing things, such as traveling, because I don't want anyone worrying.  I choose to make the effort to continue having a life.  I LOVE the fact that I can help by house-sitting, because it's something I can actually do.  It's a way of helping those who have helped me so much.  It's way important to me to be able to help back, because I get so much help.  I write about the bad things that happen - it's just that - shit happens. 

I worry that by writing this, my house-sitting friend will be afraid to ask me to house-sit again, knowing how much it affects me MS-wise.  But when it comes to MS, I promised that I would be honest. 

Before my trip, my mom asked me why I put myself thru it - getting to a baby shower on Saturday, house-sitting that Saturday and Sunday, staying with sister (which can be risky temper-wise for both of us) for the next 5 days before it was time for the other house-sitting "job" for another 6 days.  I told her I didn't know.  Because of the shower, definitely.  And that I didn't know all three things would be so close together.  And that Jeremy had gotten me a direct flight, which would help.  And I can add to that by saying planes and trains are the only time I feel pain-free. 

Actually, it's 4 things so close together, because after the 6 days of house-sitting, I come home for two days, and then take a train to Salinas, California, for the parole hearing of the man who murdered my brother. 

No stress there.  Just say'in. 

It's just kinda unfortunate that all these things happened so close together.  But then again... I would not want to travel back and forth in between everything. 

Can you tell that I'm hoping Certain Airlines Googles itself, and finds my blog? (I guess that's not gonna happen, after speaking to my son)(But he's right).

I will admit that after the parole hearing, I will not travel again until I get the wheelchair... 

My god that was hard to type. 

~

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The 2nd Day of Trying to Get to Idaho Falls

Taken from "Certain Airlines Official Website: 

"Certain Airlines (real name retracted by me) is committed to providing a safe and comfortable travel experience for all of our customers, including pets. Because we share our customers' concern that their pets' flights are stress-free, we have enhanced our animal acceptance policy to transport pets as both baggage (accompanying a passenger on the same plane) and cargo. Our program is called We Love Your Pets.  (Again, real name retracted by me)

The program offers the following options:

• Customers can track their animals traveling as cargo online throughout their journey.
• Certain will continue to accept small pets for travel in cabin in applicable markets.
• Certain's policy for service animals, such as seeing-eye dogs, has not changed and they will continue to be welcomed on board or as checked baggage.  (Bolding mine).
• Pets can travel Certain's cargo service offering same day, airport-to-airport delivery with features designed to ensure an animal's comfort and safety."

Tell me if I'm wrong... when one reads that, would one delve deeper into the website to see if there are further requirements for flying with service dogs?  Note where it says, "has not changed", so him telling me it changed a week ago wasn't... ummm, correct. 

I did delve deeper into the website, (yeah, sister's computer!) and nowhere on their official website does it say they require 48 hours notice, a doctor's note, proof that Annie is a service dog, or proof of disability. 

Added Note:  Three days past the event, I must admit to perhaps exaggerating on the proof of disability required part.  He wasn't that dumb.   But it was most CERTAINLY IMPLIED that I was faking needing a service dog, and at the time, I felt like I had to prove I was disabled.  The hour and half seems awfully long, but I KNOW I was at the ticket/check-in desk the recommended 2 hours before the flight, and I KNOW that the man who pushed my wheelchair said we had a half hour before the flight.  So that equals an hour and a half from ticket desk to wheelchair, and the half hour to the gate = 2 hours.  Luckily, people in wheelchairs get to zoom thru security - one of the few and rare benefits of being disabled. 

When I got home, prior to the flight on the second day, I found my paperwork for the service dog tags, my doctor's prescription for a service animal, my Social Security Disability proof of income, and the medical record of my diagnosis.  I included the actual prescription for a wheelchair, in case he would tell me those could be had on the Internet too.  And I gave Annie a bath. 

I also called Airline to find out where my luggage was.  If it was still in San Francisco, I didn't necessarily HAVE to go to Idaho Falls... my sister could find someone else to drop in on her cats.  The other house-sitting "job" didn't (doesn't) start till this coming Friday.  But then again, did I really want to deal with getting said luggage to the airport again?  That alone exhausted me.  No, I did not. I have over-packed on my last two trips so that I could just leave some clothes with my sister, and then I wouldn't have to pack hardly at all.  Same plan for Denver, where Jeremy lives.  When the Airline voice mail directions said "Waiting time is estimated to be  20 minutes" before I could talk to someone, two seconds later, a human responded!  He said my luggage was still in San Francisco and I could pick it up at the Lost Luggage place. 

So...on the second day at the airport, after packing a backpack with some clothes in case my luggage got lost again -

Genius.  It rolls, it's a back-pack, and I can sit down!

I approached the ticket desk with confidence, eager to give the paperwork (that I had marked in red marker "Against the Law" on each page) to the Certain Airlines Supervisor.  (Since my computer was dead, I wasn't able to get a copy of their service dog policy, but I trusted my son when he said there was nothing on their website.)  I had everything but the 48 hours notice, but I thought under the circumstances, it could be over-looked. 

Of course, I was no dummy.  I first went to the ticket desk and presented myself as a non-rev with a service animal with 2 bags to check.  The two agents were perfectly pleasant and cheerful and welcomed Annie, saying what a pretty dog she was.  They saw that I had missed the 12:30am flight the night before, and rather than telling them the whole sordid story, I just said I confused the am and the pm.  They sorted it all out in a heartbeat, and checked on my luggage.  It would be going on my flight.  (??? At some point, someone told me it had already gone to Idaho, so that was 3 different stories about my luggage).  They asked me what kind of service animal is my service animal, and I replied "Mobility".  To ask that question is legal.  Sometimes I get confused and say "Golden Retriever".  As they were printing out my boarding pass, telling me the seats were wide open (lots of seats and non-revs will most likely get on the plane), I asked...

Me:  "Don't you need my paperwork?"

Nice ticket agent ladies:  (looking confused) "What paperwork?"

Me:  "For my service dog to get on the plane".

Lovely ticket agent ladies:  "No, we just need to know what type of service animal she is", still looking confused. 

Me:  (imagine that)  "Hmmmm, the supervisor last night wasn't going to let her on, but he finally did"

Fabulous ticket agent ladies:  (looking confused)  Why are you here today then?

Me:  "Pilot No-Show." 

Perfect ticket agent ladies:  (handing me my ID and boarding pass)  "Have a good flight, and we're sorry you had a bad experience yesterday".

It looks like there's a "No" there, but it's security person's initials.  It definitely says "Service animal ok!" 

(Wow.  I just remembered... the Certain Airlines supervisor hadn't asked for my ID.  That's hilarious.  He's hassling me for paperwork that he has no right to ask for, but he doesn't ask for my ID...). 

I saw the same Certain Airlines Employee who herds the humans thru the ticket line, and asked if the same supervisor was there, and he said that he had gone home already. 

Damn. 

At the gate, the pilots saw Annie and came over to introduce themselves, and would I like the bulk-head seats for Annie Darling?  I said Sure, but she's able to sit underneath the seats if need be, but they said that wasn't necessary, and Annie Darling could have more room in the bulkhead seats.  They brought me the new boarding pass with the new seat number on it, and asked if there was anything more they could do.

No thank-you, you've been lovely, I'll just sit here and wait for the plane.  Thanks so much!

~

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After Years of Mostly Problem Free Traveling, "Certain" Airline More Than Made Up For It With a Collossal F*ck-up

IMPORTANT AIRLINE TERMS & PHRASES FOR A CERTAIN AIRLINE

Planning:  something most people do when traveling to far-off places on the planet. 

Preparing:  what most people do when leaving there home for an extended time.  Such as making arrangements for their pets to be cared for in their absence, cleaning out the food that will spoil, and cleaning the house so the cat-sitters don't think you're a pig. 

Packing:  required for most people when traveling to far off places on the planet. 

On a personal note?  Planning, preparing, and packing are not my strong points.  My son, tells me over and over that I pack too much and I need to get it down to a backpack.  I totally agree.  So you can imagine the argument that ensues during the packing phase, while I'm alone in my apartment.  Evidently, Self doesn't agree with me.

Non-Rev:  a passenger who either works for the airlines, or immediate relative of the person working for the airlines.  Non-revenue passengers get to fly free or at very little cost. 

Purpose:  reason for traveling.  In this case, it was to attend a baby shower (triplets!) for someone I really care about.  The fact that 2 house-sitting "jobs" came up within a week of said shower is a major component of this document... such as packing for two weeks...

Responsibility:  having certain duties.  Again, in this case, I also needed to house-sit for both my sister and then a friend. 

List, Listing, Listed:  what the employee of the airlines has to do in order to get his immediate family onto the plane.  It's what paying passengers do when making a reservation.  Somewhat of a hassle when it comes to having a mother who's got planning, preparing, packing and cognitive problems.  I always feel sorry for Jeremy when we're going thru this process. 

Certain Airline Employee:  herds humans thru the ticket lines.  He asked if I had permission for Annie, and I said "huh?"  He said he'd have to get the supervisor to check on it and he'd be right back. 

Power-tripping Certain Airline Supervisor Employee:  One and a half  hours of not being allowed to take my Service Animal on the plane.  All of a sudden, Certain Airline requires you bring a doctor's note that you need a service dog, proof that your dog is a service dog, proof of disability (evidently he couldn't see) and 48 hours notice prior to the flight. 

Non-rev passenger:  Not allowed to complain, whine, weep, bitch or beg because, after all, you are flying free or at very little cost.  If you do, it reflects on your son's employee record and you might lose the right to fly free or at very little cost. 

City of San Francisco Service Dog Tag:  Not enough proof that she is a service dog, because "they can be ordered on the Internet". 

Furious:  What son was when I called him to tell  him what was happening.  He told me to go into bitch mode, I had his permission.  I didn't want to, because of his employee record, and it was obvious to me that doing so would make this particular Certain Airlines supervisor get his back up even more. 

Effort:  trying to be pleasant to the Certain Airlines supervisor, while son is yelling in your ear to go into bitch mode, or give the *&^%^&^%  phone to the Certain Airlines supervisor and he would (*&^%^*&^% take care of it. 

Relief:  when power-tripping supervisor finally decides to let Annie on the plane.

"Shut-up":  what your son says when you tell him the Certain Airlines supervisor is making out your boarding pass, and you're saying to this man that this hasn't ever happened to you before.  (Perhaps not an official "Certain Airlines Terms and Phrases" but now that I think about it, the Certain Airlines supervisor really, realllly wanted to tell me to shut up). 

Helpful:  After one and a half hours, what a Certain Airlines supervisor says to you, in anger, "Ma'am, I am trying to help you", after you told him that this has never happened to you before. 

Rush:  having a half hour to get thru security at the San Francisco airport (busy, long lines) and to the gate. 

Wait:  what one does when at the gate and they are waiting for the pilot.  For another hour. 

Cancel:  a word that you do not want to hear at an airport.  Not in any way, shape or form.

Pilot No-Show:  somebody's gonna get fired...

Customer Service Employees:  Saints.

Worry:  imagining your sister's elderly cats (15 & 16) are going to starve to death. 

To add insult to injury:  When standing in line for a new boarding pass for the next flight out (for the next day, thanks, Idaho Falls for being such a small airport), a man ahead of me was all happy cause he got a flight for that nite via Denver or Vegas or something, leaving at 12:30am, and the 3 Customer Service agents kind of hush hushed him, and said loudly there were no more flights to Idaho Falls that night, which implied to me that he got the last seat.  When it was my turn, I said "I want want he has", in a joking manner.  When I told her it was non-rev, the Customer Service agent said she wasn't spose to do this, but she re-listed me for the next flight.  As she handed me the boarding pass, (which means I got a seat), she said it was for 5:45pm the next day.  As I left the desk, she told me to be sure to check the flight times.  I thought, yea... okay... of course I will, nice advice.  I went home, which is no piece of cake, cause I had to get off the train at 16th and Mission, which is a major scary druggie hang-out, and it was 9ish o'clock.  Dark. 

Lost:  another word one does not want to hear at an airport. 

Luggage:  items of clothing, baby presents and medication packed tightly, usually in rectangular shapes and in various colors.  (Yes, I did have 3 days of pain meds in my purse, I'm not stupid).

Decision making process:  deciding there was no way in hell I was going to make the trek back home with 2 pieces of heavy luggage and back again to the airport the next day.  They could stay lost for all I cared at that point.  Dare I admit that sometimes, when travelling, Annie feels like another piece of luggage?  Having her means one hand is always occupied with dog matters.

Diligent:  At 10am the next morning, the first thing I did was check the flight times.  Maybe the 5:45pm flight was really at 7pm, because my son had told me that was the only direct flight to Idaho Falls on a weekend and maybe she realized at the last minute she made a mistake.  I had to look at the boarding pass several times and the calendar.  It said 12:30. ???  I looked at the clock.  It takes an hour to get to the airport.  I was suppose to be going thru Security by now...

Anger, Disappointment, Confusion:  what one feels when one realizes you're going to miss your flight, and you could have gone to the baby shower after all.  Late maybe, but there, if all went well. 

Lo and behold:  She should have given me a "wink wink" when she told me to re-check the flight time.  Because she had given me a boarding pass for the same flight the man several places ahead of me had got - the 12:30am one the night before.  While I was still at the airport.  I would have made it to the shower for sure. 

Alternate meanings for Anger, Disappointment and Confusion:  why in the world would those 3 Customer Service Agents make a big deal out of there not being any more flights to Idaho Falls, if it was not true? 

???:  Something that Certain Airlines needs to add to their website, because that's how they operate.

Certain Airlines Official Website:  a good informational resource for travelers.

To be continued...

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Busy busy busy

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Wow.  My life just got complicated.

The results of my brain, neck, and spine MRI did not show any plaques.  The last neurologist in Idaho Falls was not convinced it was MS.  My current one feels the same.  I'm atypical because I have the numbness on both sides of my body, and the pain is constant, on both sides.  We've decided no more of the big gun meds (shots) until more tests are done.   Another nerve conduction study will be done in June.  I gave blood yesterday for more extensive lab tests.  Do another one tomorrow after fasting.  Then no more doctors until June.  Except for trying to get the wheelchair, which is proving difficult.  No one seems to know HOW to get one!  I may resort to the Scooter Store after all.

One good thing - she upped my Lyrica, which was the main painkiller.  In Idaho, my dose had reached it's maximum, but down here, I'll allowed another 200mg's, so I am so happy not to have to add something new, when I know more Lyrica will help.

I've been reminded how much stress affects me, cause I've been going thru a friendship gone Mean Girl, and for a couple of days, I could barely make it halfway thru the dog park.  Who am I kidding - I only was able to do half of it.  Thank goodness Annie loves to chase the ball and that I have a Chuckit, otherwise she wouldn't get enough exercise.  

I've got a baby shower to go to in Idaho Falls on March 24th, and house-dog sitting to do in Idaho Falls on March 30th thru April 4th, so I'll just stay in IF that whole week and a half to avoid flying back and forth.

Then on April 10th, there is a parole hearing for the guy who murdered my brother, Dan, in Soledad, which in near Los Angelos, I think.  I've never gone to one before.  His daughter, Heather, has gone to two of them.  His sentence was 19 years to life, and this is the 19th year, so it's an important one to get him to have to stay longer.  I'll be taking the bus or the train, and will get to see my niece, whom I haven't seen since she was just a wee one. 

If you knew Dan/Danny, and would like to write something for the parole hearing, email it to me, and I'll make sure it gets there. 

It would be really nice to get the wheelchair in time for all this traveling.

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Healing

Healing.  'Tis momentous. 

I don't do MRI's very well.  During the beginning of the diagnosis process, I had 3 of them within days of each other, mostly because I didn't know being in an MRI machine would cause me to have flashbacks of childhood sexual abuse.  One technician had the comment of "she's like a cat on a hot tin roof, trying to get out".   So they started putting me down, knocking me out, letting me drug my way thru it.  But then, policy changed and they weren't allowed to give me anesthesia any more.  So it was Valium and Versed.  Because Versed is supposed to help you "forget" the procedure/s, sometimes I would think "oh, I'll be fine", only to discover I wasn't and it would have to be rescheduled again.  Since I have to have one every year to keep track of the progress of the MS, it's been an ordeal each and every time.

(Only it isn't open like this - it's a closed up tube)

I've skipped having one for the past two years in Idaho because I got sick of the doctor situation.

There was one scheduled last Friday.  I had asked Jeremy to come be with me, and he flew in from Denver.  He's never been with me thru an MRI, so I was a little embarrassed to need him, but I don't know anyone here in SF well enough to go thru it with me.  I don't like Jeremy seeing me at my "weak" moments, and having sexual abuse flashbacks is definitely not my favorite thing for any one to see.

As luck would have it, there was a foul-up with my medication that was supposed to "calm" me down.  As in... it wasn't ordered.  My love for the San Francisco medical system slid down several notches.  If Jeremy hadn't flown in from Denver to help me, I would have cancelled it.  I didn't want it to be a waste of time for him, so I put on my big girl panties and went thru with it.

In the past, one time a boyfriend had been allowed to hold my foot in order to "ground" me, so that is what I had Jeremy do.  First he put his hand on my ankle, over my pants, and I asked him to move to my foot - bare skin.  Having his hand on my pants leg just made the material too... heavy. 

There was a mold-like thing that contained my head, and the technician stuffed cotton wedge thingies down by my ears, so that my head couldn't move.  Same with my elbows.  When preparing for it, I had asked how long it would take and she said 2 hours.  I yelped quite loudly "2 hours!!!???", and was very upset at the thought.  Brain, neck and spine.  Having to hold still that long is torture.  She said we would take breaks so I settled down a bit.

 Having Jeremy there and having my head wedged in helped TREMENDOUSLY.  As it turned out, I couldn't "feel" Jeremy's hand on my foot cause of the numbness, but when he would pat or rub my foot to reassure me, I could feel it move my whole body, which didn't matter during the first part, cause they were doing the brain, but it wouldn't work for when doing the spine.

I was doing it!  Without freaking out!  I even imagined Annie, who was in the next room with the technician, having on a Superman's cape, and that if I called her, she would come to my rescue by knocking down the door to get to me.

 After the 30 minute brain scan, she slid me out of the machine, and I told Jeremy I was fine, and he could go take Annie for a walk instead, cause I was OKAY!  Off he went, and an hour and a half later, I was done.  I walked out of the little building, into the bright and beautiful and perfect weather, and saw Jeremy walking up the sidewalk with Annie.

I was disoriented as to what part of the hospital we were at, and didn't know which way the bus stop was.  He bought me lunch, and as I talked about how wonderful I felt, overcoming such a longtime issue, and also how confused I was as to my whereabouts.  Jeremy said it was because the MRI was really a time-machine.  It might as well have been true, because I felt like a brand new person.  The flashbacks during the MRI's were the last frontier as far as the abuse issues are concerned.

I am done done done with sexual abuse!  Thanks to my kid, my dog, and stupid little cotton wedgies that held my head still.  I think, in the past, I would have to concentrate so hard on holding still, that it gave the flashbacks and panic attacks a chance to get in.  Something so simple as those wedgies... welcome to San Francisco medical care!

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Something I hate to do

Today's prompt from Chantelle is "Something I hate to do".

Nuff said.

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Drink. And damn, I feel GREAT!

Today's prompt from Chantelle of Fat Mum Slim fame is "Drink".  Having just cleaned out the fridge, I figured I'd show it off.  There's 3 bottles of apple juice, 3 Gatorades, one box of milk, one pitcher of water for the dog and cats (cause they don't like the taste of San Francisco water unless it's cold).  Another water jug for Annie when we are out and about, and a couple of water bottles for me.  Oh, and a pickle container.  With pickle juice in it.  Yuck.  Just today, I told my son that I hadn't been drinking milk for a couple of months, and yet, there's a box of milking staring at us.  Only because it was in the donation box, and I was curios how it tastes.  It doesn't expire until late March, which seems so weird to me.  It's also organic.  I'll probably get addicted to milk again. 

Today was a VERY good day.  When I told my son that, he wanted to know why.

It was as if a very heavy and dark fog had lifted.  My brain was back.  I was besting my time on the Sudoku game each time I played it after months of staying at the 4 minute mark.  When down in the lobby helping with food donations, I finally learned and retained at least 12 of the resident's names.  Martha, Dee, Betty, Louise, Gerald, Burt, Willy, Debbie, Silgen, Linda, Kim, Michael and Gary.  These are all people I've been friendly with, even making friends with, but I just could never remember their names until today.  It was the strangest feeling - sudden clarity dawns and it's so easy again. 

Tomorrow, I'm going to remember the names of the people at the dog park.  I do know most of the dog names.

Phyically, I took Annie out at 7am, a full 2 hours earlier than usual, but that was because I fell asleep last night without taking her out for the last pee.  Then I did about 2 weeks worth of dishes.  After that, I went downstairs to help with the food donations till about noon.  Then I took Annie to the park for a couple of hours.  We watched a dance troupe learn and practice a new routine. 

When I came back, we visited the lobby rats for a little longer, and then we went home at about 4pm.  I rearranged and cleaned the kitchen some more.  Then I found space for some material and curtains that I've been storing in a large trash can, which was sitting in the bath tub.  I'd had to move it out every other day on shower days.  I gave the trash can away.

Jeremy wants me to figure out what is different - what did I do to feel better.  I just don't think it works that way.  My diet hasn't changed, and even if it had, I would think the changes would be gradual - not the night/day or black/white sudden-ness of symptoms coming down, or disappearing.  Last night I went to bed feeling like shit for the last few days, and this morning I practically leaped out of bed, and stayed strong all day long.  I didn't need a cane, or even Annie except for stairs. 

The only thing different is I had Gatorade yesterday for the first time since leaving Idaho.  With that thought, I believe I shall leap out of bed and got get some Gatorade!

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