Sequestration

This heat is really messing with me.  I'm confined to the only two room of the house with AC.  The poor little portable unit can't keep up and I'm still sweating.  Today it hit 100F and with the 70% humidity the heat index was between 105-110F.  Ick.

My only computer is the iPad so I keep darning the battery dry.  For some reason it is much more tiring to use than my big setup in the family room.  I think it is because I don't have to scroll so much.  Scrolling really wigs my poor brain out.

Generally not a good week.  The day after my last post my skating coach's dad died.  I knew him.  Another sad day.  Pics have been posted of my friend who is dying and she looks awful!  I cry every day for her.  She is so sweet.

Some good news, my son is on the mend.  He is doing fine and got a couple of days of work in.  The heat is bothering him which is very unusual.  Normally he loves the hot weather.  But he is out of pain thank goodness.  I think he'll be fine so I can relax some on that front.

Until the heat wave ends tomorrow night I remain sequestered in my two room.  I hate it when my world gets this small.

The Straw

This last piece of news was just too much.  I'm descending into a huge huge sad.  I won't know if it is going to hang around and officially become depression.  I'll have to wait and see on that front but right now I just keep breaking out into tears.

I watched the Texas senate live the other night.  I witnessed senators quoting the bible as THE argument for why this bill should be made into law in the United States of America: a country that was founded squarely on the separation of church and state in order to avoid things like this; one religion becoming the law of the land resulting in one person's beliefs being forced upon another of a different faith.  I witnessed the senators shut down the session and open it up again (before midnight) claiming that it was the next day so that they could legally vote to pass the bill to severely restrict women's access to a safe medical procedure.  Before the vote they prayed for God's guidance.  Afterwards, I witnessed one of the sit down protesters get picked up and body slammed into the marble floor so hard that it knocked him out cold.  He came too not being able to feel his hands and feet with his head in a pool of his own blood.  He was released from the hospital with a concussion the following day.  I shake my head and wonder what this world is coming too.

The following day I hear that Zimmerman was acquitted of all charges.  I wasn't at the trial.  I didn't see the evidence.  I don't understand the law involved.  However, this still doesn't seem right.  To me this seems like an uneven handed metering of a law that shouldn't be on the books anyway.  Stand Your Ground was written up and pushed by ALEC and spread via the republican party with the full backing of the NRA.  How could this not result in violence?  How could this not result in racial tension?  What can we possibly do to change this?

Then shit got personal.
My son had a headache and neckache since Wednesday.  He thought his neck was out of alignment so came with me to my awesome chiropractor for an adjustment on Thursday.  Friday he woke up with a splitting headache and thought it was from the adjustment but now a fever had kicked in.   I let him sleep in Saturday thinking that he just needed some rest and he would be fine.  After he did get up he offered to take me to the farmers market per usual but he was still having headache neckache problems but now he was having dizzy spells as well.  Thing is he isn't a complainer so he behaves normally.  When we finally got home we both took naps.  Neither of us felt like cooking so we went out.  He was constantly playing with his neck trying to stretch it.  His fever was back.

About an hour after hubs went to bed my son came down from his room and told me that he needed to go to the hospital.  When he says this. it is SERIOUS.  He never ever ever complains.  He has been like this since he was a baby.  So he calls his doc to get permission to head into the ER, while I get hubs up to drive him over.   Meanwhile I had no idea that kid had begun to feel woozy.  Like he had had several drinks when he hadn't had any alcohol in days. Inn the meantime hubs starts throwing a grand mal hissy fit in the middle of the living room.  Why is it HE has to deal with this?  Why is it always HIS responsibility to pick up the pieces?  It got the point where kid just yelled "FINE.  I'll f^ing drive myself to the hospital!!" Then went back to trying to talk to the doc on the phone.  Hubs quiets down and drives kid over there and they start testing him for meningitis.  This involved blood draw, CT scan and a lumbar puncture.  In the middle of this, he starts texting me so that I know what is going on.  After four hours there, the doc decide that he has erlichiosis from a Lone Star tick bite he got three weeks ago during an airsoft game in a farmer's field.  The doc said it was very good that he got into the ER when he did or his kidneys would have shut down from the infection.  They pumped him full of antibiotics, saline and pain meds and sent him home with a scrip for doxycycline.

Now I'm on my freak bus.  Every time he comes down with a virus I get scared he will get CFS like me. It hit me out of the blue.  It tends to run in families.  Erlichiosis can linger in the body.  This tick can also transmit Rocky Mountain Spotted Fever which is a known CFS trigger.  So I'm worried.  I'll continue to worry until his is well and back to his old self.

The Straw
While all of the above has affected my mood greatly, I didn't start my decent into the deep deep black well of sadness until today.  Today I found out that a friend of mine from college is dying from cancer.  She lives in Puerto Rico so I haven't seen her since the year that I got sick with CFS.  I attended my class reunion during the infancy of my illness.  We marched in the alum parade together.  She invited me to visit her in PR when I got well enough to travel.  She hosted a reunion earlier this year for my class to celebrate all of us turning 50.  I heard it was a blast.  Now her family is traveling down there to be with her for what is probably her last days.

This is just too much.  I am so sad.  She is a wonderful wonderful woman.  I was so looking forward to traveling there to visit with her.  I miss her posting pictures of her painted toe nails in various settings.  It became a running gag.  She would paint them a wild color and then when she posted about a trip somewhere she would post a pic of her brilliantly painted toes enjoying the trip.  She is just a lovely person.  And I am very very sad.

Sick Humor

Mr. Sun

Okay I'm not nuts.  Well maybe a little but that is another story...

I've talked before about sunlight exposure helping me feel better.  Prior to this evening I had no idea why this happened.  I didn't know if it was a placebo effect but that didn't make sense since I didn't expect to feel better after being out in the sun.  I just noticed that I did feel better after being out in the sun.  I did several online searches and only came up with the idea that it might be related to the boost in vitamin D levels.  However, taking supplements didn't have the same effect that going out in the sun did.  So it was a mystery.  Well not anymore.  Here is a great TED talk that explains it a little bit.  There is still more research to be done (when isn't there???).

http://on.ted.com/Weller

This has two links to CFS patients.  Several studies have shown that we have reduced blood flow and this man has seen increased blood flow after exposure to UVA.  Also, UVA exposure seems to affect the NO cycle in the skin cells.  Well, there is also evidence that our NO/ONOO- cycle is on the fritz.  So these are two possible explanations for why I feel better after sun exposure and they have NOTHING to do with vitamin D.  So I feel a little less crazy-patient this evening.  There is a legitimate explanation for why I feel better after doing some sun bathing.  Now I just need a UVA lamp for winter so I can get my NO on.

Gut Cam

This reminds me of that old science fiction movie, Fantastic Voyage.  I saw it as a kid and thought it was wonderful.  I was riveted by it.  Anyway, here is a real camera that has been swallowed by a gastroenterologist to give you a second hand tour of his guts.

Ooohh I found the trailer to Fantastic Voyage

Waiting for Poo

No, that isn't a typo.  I'm not waiting for Pooh bear.  I sent in my poo to a lab two weeks ago and I still don't have the results back.  My health is in decline again and I've had two weekends in a row where I've spent almost an entire day in bed feeling like absolute crap.  You know, those days where I look like I'm asleep but I'm really awake but just can't move.  Hubs keeps thinking I'll snap out of it if I just get some shuteye.  HAH!  Not a chance.

Anyway, back to the poo.  My doc wants the poo test results before he'll give me more antibiotics.  He wants to target the drug to what might be actually lurking in my guts.  Good idea and I approve of the plan but I wish the lab would hurry up.  I'm still doing better than December but the number of bad days are increasing.  I'm doing less around the house but I'm still managing to walk short distances unaided first thing in the morning.  The evenings are another story and my walker gets used way more often than I would like.

Of course my sleep is getting seriously wonky again and I'm not going to bed until 4, 5 or even 6am.  That puts a serious dent in the activities for the day.

During my better moments this year I have managed to get a bit of cleaning done.  I dusted down the walls in the kitchen.  Cleaned out the pan cupboard.  Moved the frozen meat to the new freezer in the garage.  Dusted off the plastic plant in the bathroom.  Gone through the kitchen cabinets and thrown out old food.  Gone through the fridge and gotten rid of whatever the heck was growing in there.  Some of it was beyond recognition.  I live with two other people but they are guys and just don't get the idea that the fridge needs to be cleaned out regularly.  Gross.  So I'm pretty happy.  I've gotten rid of the worst housekeeping catastrophes that were driving me batty.  I would love to be well enough to tackle the dust bunnies in the bedroom but that will have to wait for another day.  I never thought I would miss housecleaning or look forward to doing it.  

Bathing Suits

Oh how I wish I were a guy.  Bathing suits would be so easy.  Just answer a short list of questions and poof you go home with a new suit:

1. Does it fit?
2. Do I like the color and pattern?
3. Does it suit my needs?  Lap swimming?  Surfing?  Hanging with my buds?
4. Do I want to show off my junk or hide it?

D.O.N.E.

But noooooo....

I'm a girl and bathing suits and I have a long and sordid history together.  

One of my earliest memories is paddling in the kiddie pool with my sister and mother in one of the many public swimming pools in England.  Back then things were simple.  Did I like the color and pattern of the suit?  Yes.  Poof new bathing suit.  

This lasted for many years.  Paddling with my mom and sis when I was really little.  Swimming lessons with my dad in the hotel pool on Cape Cod just after we emigrated to the US.  Swimming lessons from the lifeguard in the tidal river down the street from my house.  All was well until one day, I was diving off the docks into the tidal river with my friends.  I was in a two piece suit and dove in headfirst.  The bottom half of my suit came off my bum.  Luckily it got stuck around my ankles and I was able to pull it back up before anyone could see me.  I was mortified.  That was the last time I ever wore a two piece suit.

My favorite suit back in those days was a fuzzy orange one.  I liked it because it was a one piece and because the fuzz kept me warm so I could stay in the water longer before needing to come out and sit in the sun to warm myself up.  I LOVED being in the water.  My sister and I spent every single summer day in and around the water.  If it wasn't at the local beach with family or friends, it was in the local motel pool where my mum worked as a chamber maid.  She said we swam like fish.  We spent as much time underwater as above.

Suits were fairly easy to shop for back then.  I was a standard size.  They didn't have all the fancy cuts and patterns yet.  You picked one piece or two piece and a color you liked.  There really wasn't much variety.  It became a ritual.  Each year sometime in the spring my sister, mother and I went bathing suit shopping.  We would each find a suit that would be worn that year.  It was a thing.

I went off to college and took real swimming lessons from a real swimming coach and I learned all the details of proper lap swimming.  All four years I swam laps in the pool at college and if I were home I swam laps in the ocean.  I don't remember much bathing suit angst back then.  I always got a once piece that was practical for lap swimming.  I usually went suit shopping with either my sister or mother or both.  I rarely went by myself.  It is a girl thing.  You have to have someone with you in the fitting room to let you know which suit looks best on you.

As I got older and fatter things started to get weird.  Each time I moved I sought out a gym that had a pool so I could continue swimming even if I didn't have access to the ocean.  I love being in the water and I found lap swimming to be very relaxing.  But now that I was older and out of school I was working in offices or labs at a desk all day.  I got bigger and bigger and eventually I got too big for the regular size suits.  I had to go to the plus size department.  The suits had gotten fancy by this point; wraps, plunging necklines, various cutouts.  To boot, plus size swim suits were really for sunbathing or paddling not hard core lap swimming.  Suit makers seemed to think that plus size gals didn't exercise hard.  Every year was a struggle to find a suit that fit, that I looked good in and that would work for lap swimming.  I would be standing in the fitting room flailing my arms around to see if my boobs would stay in the suit.  And I no longer shopped with my sister or mom since I had moved away in order to get work.  I was on my own in plus sized hell.

Slowly I went from colored, patterned suits to plain black.  As I got bigger I was trying to hide my body.  At some point I had become embarrassed by it.    By my size and my tubbiness.  I store my fat around my middle so I look very rotund.  I joined water aerobics and got very good at it.  I added in weight training and land aerobics and lost quite a bit of weight.  For one glorious year I got to wear a blue suit with a pattern on it.

During my pregnancy, I loved being in the pool.  In my last trimester it was a relief to get in the water.  I no longer felt pregnant as the water buoyed my very large tummy up and took the weight of the baby off my spine.  I could stand up straight.  Other people in the aerobics class would tell me that they didn't know I was pregnant until I got out of the water.  I also loved the maternity bathing suits.  I could wear colors and patterns again since I wasn't embarrassed about my chubby tummy anymore.  

After my son was born, I had to take a hiatus from the gym.  I didn't have time to work full time, take care of a newborn and also go to the gym.  I got very fat pretty quickly.  Eventually, several years later I found a gym with a pool and started swimming again but it was back to the plain black plus size swim wear.  I moved a lot back then.  When I had time and money I would join a gym and start either lap swimming or water aerobics or both.  However, it was sporadic.  I had to find a sitter since hubs didn't work regular hours.  My body was huge and my boobs were enormous.  Suit shopping had become almost impossible.  It also wasn't much fun doing it by myself.  I missed my mom and sister.  Then I found H2O Wear.  My water aerobics instructor wore their suits and highly recommended them.  I loved their suits.  Plain, practical and fit pretty well.  Now instead of the spring ritual of raiding the racks of swim suits at the local mall I mail ordered one from H2O.  While this didn't reduce body embarrassment, it greatly reduced suit shopping angst.  A small but appreciated improvement.

I was lucky enough that when I bought my house it happened to have a pool in the backyard.  Hubs didn't want anything to do with it, so all pool maintenance fell to me.  I learned how to take care of the water chemistry, how to vacuum the pool, how to backflush the pump.  I was so  happy we had the pool.  I took very good care of it and swam in it almost daily during the summer months for ten years.  I even did water aerobics in it.  One of the great joys about having a pool in your own backyard is that you can go skinny dipping at night.  I LOVE swimming nude.  I would turn out all the lights in the house so no one could see me in the pool.  Hubs would hold the towel for me when I climbed out so the neighbors couldn't see a thing.  During the day I was in a  plain practical black suit.  Plus sized of course.  No more angst since no one could see me just the little old lady in the upstairs apartment next door.  She used to trot out onto her deck and watch us swim.  Sigh.  I couldn't grow a hedge tall enough to block her view but swimming at night was my absolute favorite.

Then I came down with CFS.  The first summer I managed to take care of the pool chemistry but couldn't always vacuum it.  I would get in and putter around.  I couldn't really swim because I would crash for the next several days.  I remember one day specifically.  I did the stretches I was taught in water physical therapy I had a few years before.  I felt fine so I vacuumed the whole pool afterwards.  The next day I came down with the "flu": shakes, fever, hit by a bus, etc.  I didn't know about PEM yet and didn't realize that I couldn't do a lot of exercise.  I told my doc and he thought I was nuts.  The following year I could no longer control my body temp and if I could manage to get into the pool I would be frozen within minutes and be forced out of the water shivering.  I had gained weight so I was swimming in a very stretchy swim skirt that I had been using for figure skating and an old oversized tshirt.  The following year we didn't even bother opening the pool.  I packed away my bathing suits with the clothes that no longer fit me.  I didn't bother even looking at new ones.

This will be my fourth summer with CFS.  I keep looking at bathing suits in the catalogs that come in the mail.  I want to buy one.  I really REALLY want to buy one.  But what is the use?  We won't be opening the pool.  I can't take care of it and my kid doesn't want to.  I'm a 3x/4x depending upon the brand name.  I'm HUGE.  I'm not sure if I'll be even bigger next year.  Each season I have to buy bigger clothes.  Who knows what size I'll be next year.

My mom came to visit me this past week.  We went clothes shopping as usual.  I bought some nice new tops for summer.  As she wheeled me into the plus size department in Sears, we passed by the bathing suits.  And I had a sad.  I was shopping with my mom and I wanted a bathing suit really badly.  I wanted to pick out a couple of pretty suits and go in the dressing room with her so she could help me decide which one looked best on me.  It would be like old times.  Spring bathing suit shopping like when I was a kid.

But I stopped myself.  When would I use it?  When would I get to the beach?  Would I be able to even walk across a beach to go sit in the water?  If I'm just sitting in the sand why would I need a new bathing suit?  Wouldn't I outgrow it by next year anyway?  So, with my sad, I bypassed the bathing suits.  Mum flew back home the next day and I showed hubs my pretty new shirts.

The following day hubs burst into the house, "do you want to go swim in Rich's pool with me?"  (Rich is our neighbor across the street)  "He has asked me over and you can come too."  All the angst came pouring back through me.  I should have bought a suit when I was out with my mom.  I'm way too fat to be seen in public in a bathing suit.  I only have tee shirts and shorts to swim in.  I probably can't even walk across the street never mind actually swim in the pool.  What if the water is cold?  What if I get stuck in the pool and not be able to climb out (this happened to me a few times the last summer I was in my own pool)?  I would be embarrassed.  I would be mortified.  Fat, huge chick gets stuck in neighbor's pool unable to climb out.  I was embarrassed about my body.  I was embarrassed about my clothes.  I was embarrassed about my lack of athleticism.  I'm a huge, fat, lump.  I decided to stay home and with a simple "no thanks".  I let hubs go by himself.

As soon as he was gone, I broke down in tears.  CFS sucks.  Swimming is yet another thing that I love that has been ripped from me.  I was so happy last year that I got to sit in the sand and get my butt wet by the waves one of the few times I had enough energy to tolerate a ride to the beach.  I haven't done any lap swimming in over six years.  I haven't done water exercise in over three years.  I miss the water.  I miss floating.  I miss the quiet of it.  I miss the gentleness of it.  I miss the freedom of it.  Being able to flip, turn, float, push, kick, roll.  I miss having handstand contests with my kid or diving for quarters tossed on the pool bottom.  I miss suit shopping in the spring with my mom and sister.  I even miss vacuuming the pool.  So I cried and cried.  

I'll get back in the water someday.  Water yoga is going to be my first exercise class followed by water PT or vice versa.  But for now I have a huge sad.  I'm grieving for yet another loss caused by CFS.  This SUCKS!  Maybe I'll buy a new suit just to tell CFS to suck it.  That way I'll look pretty while sitting in the surf the one day I manage to get to the beach.