Friday, 17 February 2012

Back in the saddle?

So, I haven't posted for ages.  I'm not sure what happened.  I think I just couldn't look at being "addicted" to being ill while I was struggling through illnesses.  The surgery took a long time to heal from, as expected, but my sinuses are doing great, says my sinus guy!  He does want me to start shooting some steroids up my nose again, as there is some swelling.  They make me more tired and fatigued, but I guess I have to work them in some how.

I had to go on a course of prednizone for my asthma over the last two weeks.  I was so proud of myself.  I didn't go into a pity spiral.  I didn't turn all princessy and demand help.  I pushed on.  I got some help, but I just pushed on.  Even through my daughter's postponed-from-my-surgery birthday party.  Yeah.  Pulling off an "at home" birthday party while you're sick, probably not the best plan.  How could I postpone it again!  It was already a month after her birthday!!  Last Friday night I ended up doing a bunch of driving around to get filler fro her pinata.  The place that you can buy a bag of filler had closed!!  After I found myself driving to the wrong location by accident for the second time, I decided I was too exhausted to continue.  So I went home and basically passed out.  Actually, that is a lie.  I was in the miserable place where you are too exhausted to even watch TV, but your brain won't stop thinking about what needs to be done - ala "How Does She Do It?" a Sarah Jessica Parker movie I watched recently.  I decided to use the opportunity to practise "relaxing and letting it go".  Every time I would think of another party thing (or anything else) I would just say "relax, and let go" and take a few deep breaths.  I got LOTS of practise.

After the party, which required two Tylenol "ones" and an iced tea to get through.  I could barely move.  I didn't feel too bad about it, as my ex was sitting on my sofa too tired to go home yet.  So I barely moved that night.  Then I barely moved the next day.  You MS-ers out there will relate.  I got too tired watching a movie "War Horse" (3 1/2 hours) at my neighbours and had to go home after 2 1/2.  Too tired to sit on a sofa and stare.  I put kiddies to bed with the least amount of energy required on Sunday night, and retired early, expecting to feel better the next day.  Wrong.  I worked about 4 hours, and then was absolutely done.  MS symptoms popping up like mad.  I was so grateful that I wasn't driving a standard, as my left foot was SO pins and needles, that it would have been painful.  So I rest, and rest and rest.  Here it is Friday, and I can hardly wait for ex to pick up kiddies for the night.  Even though I am at home right now, and only need to work about 2-3 hours today, I keep thinking about how awesome it is going to be tomorrow.  I am going to sleeeeep.  I am going to go to bed, and no one, no alarm, no thing (well ok, dog, but he'll go right back to sleep) will wake me.  I am going to wake up, look at the clock and roll over in my bed, pull the covers up around my chin and go back to sleeeeeeeep.  I can hardly wait.  Then I am going to magically not be tired at all any more and will be able to magically catch up on all that I have NOT done this week in order to be able to rest.

Yeah, well, that's the plan anyway.

Sunday, 15 January 2012

If my MS and sinuses could work together, I wouldn't need T3's!

My Mom has always said that day three after surgery is the worst.  She's right.  If you count surgery day as day 1, which wasn't exactly fun, but I don't recall any pain, and then yesterday would be day 2.  Still buzzing with anaesthetic, carefully timing pain killers, not yet tired of sleeping.  Day three sucks.  I am in pain, but trying to not take so many pain killers.  I over did it yesterday, so this morning I felt quite ill.  I am bored, but I am in too much pain to do much of anything.  The best part, is the pain in my head worsens from the computer screen's lights.  Yep.  I have done about 12 logic puzzles.

Whine, whine, whine.  My MS came back today.  Numbness on the left side.  Hey!  If my MS and sinuses could work together, I wouldn't need pain killers!

OK.  I need a plan.  Get out of bed long enough for the sheets to get cool.  Get a snack.  Take more drugs.  Yes, more drugs, less bravery, helps the day/night go more quickly.

Symptoms
Numbness/tingling left leg, left hand, some left arm

Saturday, 14 January 2012

Warning: Potty humour (Mom don't read this)

Here it is, 3 o'clock in the morning, one day post op, and I can't sleep.  I spent the last half hour or so sitting on the toilet, in my daughter's snuggie, drinking ginger ale, and praying to fart.  Oh why gods of flatulence have you denied me?  What form of penance must I perform??  I drank lots of fluids, took my colase, walked around a lot, what more must I do??  I know it must be possible.  There is no way I have gone over 24 hours without you, oh mighty gas, but the build up might cause one to wonder?  Why am I so bloated that I resemble a pregnant women?  I pace from window to window in the upstairs hallway forcing myself to keep moving, hoping that something else will move.  I stare at the snow (yes snow!!) building up outside, and grow ever more anxious about my son's Scout troupe who picked tonight of all nights to camp outside!  But alas, the snow is merely a passing distraction.  The taunt skin stretched across my belly, is not from months of diet and exercise, but another reminder of my pain.  Oh that I might have started my MS injectionable meds this week instead of next, that I might have a ready supply of needles to shove in my belly and release the trapped air, like a balloon, flying across the room, in gas releasing ecstasy.  Oh gas ex, oh rolaids, oh mylanta.  You are but a street away, locked behind chains and glass.  When will my suffering end?  When will this night...OH!  Nevermind.

Thursday, 12 January 2012

It's Alllliiive!

Hi all.  Pretty stoned from the multitude of drug they've got me on.  Can't even type!  I went well.  I'm home.

Symptoms:
Very sore head,
Very sore neck,
Very sore throat,
Very sore face.

MS?  What MS?

Wednesday, 11 January 2012

If I get sent to the Pearly Gates tomorrow, I'll tell them I have to go back and finish my daughter's quilt.

Wow.  The last couple of days have been crazy.  Son's birthday party (postponed from November) on Sat.  Daughter's birthday and party on Monday and Tuesday.  My son is going on a winter camp with Scouts on Friday and needed to have his pack ready for tonight! Surgery tomorrow. Yikes!  I just keep plugging along, knowing I'm going to have to pay for it later.  I'm just hoping that later will be when I'm on T3's and won't have to worry about resting!!

I finished packing the Christmas stuff.  Tonight.  About an hour ago.  Without having my Dad here to pack the stuff down stairs, I don't know what I would have done.  Whatever else is left out, I swear I am throwing away.

I didn't get my daughter's quilt finished though.  Sigh.  So close!

Call me morbid, but I just send my ex an email stating "my wishes" if anything should go seriously wrong tomorrow.  Or any time soon for that case.  I wish I could say it was my first time doing so, but I actually did it once before when I was in my early 20's.  Am I morbid?  Am I just prepared?  Both?  I really just wanted to make sure that my kids all got the jewelry that I wanted them to have.  Wow.  Hard to write though.  I couldn't really write goodbyes though.  I just had to leave it at that.

The weird thing is I think this is the 11th surgery I've had.  Until I had kids, I never even considered that I might die during surgery.  It was just another way to be taken care of and gotten attention for.  I loved going to the hospital when I was a kid.  It was boring, but fun.  The nurses were so sweet.  One used to bring in her cordless Braun curling iron and curl my pony tails until I looked like Cindy Brady.  One used to let me race the rocking horse down the hallway.  The worst part of the whole ordeal was that the Monkeys was on at the same time as dinner came, and they would always make me go back to my room to eat. SHEESH!

Anyway.  I wish I had another week before the surgery, but then again, I probably would have procrastinated a lot more. (*SIGH*)

Wish me luck!

Symptoms
Saturday:  Rough. Left leg numb all day, and most of left arm and face.  Trembling, fatigue.
Sunday: Slept most of the day.  Same as above.
Monday:  Basically no symptoms (because of Sunday?) until four o'clock, then see above
Tuesday: Same, plus tingling in right foot.  Been wearing glasses since Saturday.  Seemed to help. Stuttering worse

Today:
Tingling left leg upon waking.  Some in right foot.  and left face beside eye
Trembling, particularly hands.
Really tired today.

Sunday, 8 January 2012

If you don't bleed a little, you're not doing it right.

I woke up this morning with another song in my head.  This time it was a song I have heard recently.  Airbourne Toxic Event's Changing.http://www.youtube.com/watch?v=59bLUwYONEI&feature=relmfu.  I say I woke up this morning, but that isn't true.  When my ex has the kids, I usually sleep until noon, or 1:30.  12 to 14 hours sleep.  Yep.  Most people say something like, "wow, guess you needed it", or "must be nice".  Yes, I needed it.  I often do.  No, it is not nice.  I don't want to spend the majority of my day asleep.  I would love to wake up bursting full of energy and ready to get things done.

Speaking of getting things done, I finished MOST of my daughter's quilt.  I still have probably an hour's worth left.  I managed to stab myself under the nail bed with a pin, which, according to my Mom, means you're doing it right, because I bled.  She makes everything she does look so easy.  I just assumed I could quilt.  And I can.  I have made several to go to Africa, but not patch work. I stink at patch work.  Now I understand why she wanted me to look at the fabulous fabric she found to tie it all together, or the layout for the quilt she was designing.  It's hard!!  It didn't turn out all that way either.  Oh well, I'm sure my daughter will cherish it???

My hands were trembling so badly that I was having trouble trimming the threads.  That's something I keep forgetting to record.  That and how when I get worn out I make really bad decisions.  It is like I am inebriated or something.  Once I am rested I end up cringing at some of the things that I've said or done.  I haven't read anything about that being an MS thing, but it seems to be for me.  I even kissed this guy from work once when he was visiting me in the hospital.  Sigh.  I normally would have thought that one through, but maybe it was all the drugs?  No.  Cognitive function is definitely down.

I wore my glasses today, which I normally only wear if I have to do hours of reading.  It seemed to help with the headache a bit.  Plus I looked smarter!

I just keep thinking about the sinus surgery this week.  What effect is it going to have?  I am supposed to have relapsed and remitting MS, but so far, there really haven't been any symptom free days. When is the remittance?  My first symptom was on August 1st.  A really strong metallic taste in my mouth. Some of the symptoms are gone, but not all. Will the surgery cause a relapse?  Is that possible, meaning can I have relapses, or is mine really progressive?  Will there be serious complications?  Will everything be fine, and I am worrying for nothing?  More likely, will I just be really tired for weeks or months?  I'm scared.  How will I manage?  My Dad is here visiting to help me, but for how long?  I have my next appointment at the MS Clinic on the 17th.  I'm hoping he will stay until then because it is about an hour drive away, and I am worried I won't be up to it so soon after surgery.

I can't miss the appointment though.  This is the appointment where I should be starting Interferon, and hopefully finding out how often I am going to have to inject myself, if at all.  And how will I pay for it?  And what will the side effects be?  And how quickly will the muscle deteriorate from the injections???

Ah, my son yelling unintelligibly in his sleep interrupted my spazz-ing out.  I have been trying to take the Scarlett O'Hara approach.  Say in a dramatic southern accent, "I can't worry about that today.  I'll worry about it tomorrow."

Symptoms:
Pins and Needles, 3
trouble seeing 4.5
trembling 5
fatigue 5
headache 4
mental fogginess (how would I know??)

I woke up with a song in my head today!

I've always had this strange thing about me.  Whenever I wake up naturally, you know, no alarm clock, no dog jumping on the bed, no kids arguing, or crying, I wake up with a song in my head.  That is how I know I am perfectly rested.  Usually it is a strange song, like "Puff the Magic Dragon" which I haven't heard since I was a kid, or "Blue's Clue's" which I haven't watched for years.  Not usually children's songs however.  This morning it was Arcade Fire's Crown of Love.  Thank you subconscious.  I knew it was going to be a good day.


I managed to get a lot of my daughter's quilt done today!  I got everything done for my son's birthday party, and I think ran the party pretty well.  Seven eleven year olds.  Yikes.  Good thing I had a headache.  I even had a shower and did my hair and make up!  I did it by taking one Tylenol 1 (which really doesn't count, right?) and half a coke.  I almost never drink coke, so when I do, energy!  I almost fainted in the kitchen on my ex, but I made it through!


My psychiatrist says that he can't tell when I am being sarcastic (see last paragraph).  Sometimes I over emphasize it to him so that he knows.  From now I'll italicize any sarcasm. K? I've trained my kids to say that they know I'm being sarcastic because my lips are moving.  Heh heh.  I'm a nerd.  


So today, I feel as if I am being a little overly brave.  My symptoms aren't too bad today, so I feel as if I have to REALLY enjoy it.  I feel fairly positive so I have to be REALLY positive.  Why?  I don't want to whine about my illness.  I used to always answer honestly whenever anyone asked me how I was doing.  I thought it was better to be straight forward.  Eventually I learned that most people don't really want to know.  They are just saying hi.  In previous times, it would be the equivalent of inquiring after one's family.  "Hi" and "how are you" have become interchangeable.  Example of how I used to respond: " Hi, how are you?"  My answer - "I'm okay, I have a sinus infection and I am so congested that I've been blowing green for three days.  (then I would add a positive spin) Only two more days until I have my sinus treatment though!"  The irony is, now people ask me how I am and I try and turn it around on them, "I'm ok (it's the truth!  If I wasn't ok, you would know).  How are YOU?"  Nope.  They don't buy it.  "No, how are you really?"  Ugh, ugh, ugh.  For the first time in my life I want to be invisible.


Growing up, my Mom would sometimes get into conversation with strangers, or acquaintences about my health.  I was a pretty sick little girl.  My asthma was life threatening.  My Mom had to call in the ambulance in the middle of the night many times, while holding my tongue down with her fingers to keep me from swallowing it.  This was before the days of 911.  My Mom hates hospitals.  She had three other kids.  I don't know how she did it.  When she would talk to others about my health, I believe it was in the way that moms tell stories to one another.  There is an element of competition, there is an element of comraderie, there is an element of compassion.  What I got out of it was that the best thing about me was that I was sick.  The most interesting part, the most attention deserving part, and the most lovable part.  Yep.  Kind of missed the boat on that one.


Now I think that I don't want to receive significance for being sick, but then what am I doing here?  Partly wanting to figure it out, partly wanting to write, and partly wanting to be interesting for being such a medical freak.  I'm working on it.


I didn't clean the kitchen tonight.  Well, I put away the dishes, but not all the party stuff.  Sigh.


Symptoms:
HEADACHE 7
Pins and needles, left side 4
Left side weakness 4
fatigue 6
trouble seeing -definitely something going on with vision 5
Mixing up words (nouns) 4

Friday, 6 January 2012

You may think you're tired, but your wrong.

Yes, I am trying to be a jerk in my title of this.  The thing about MS is you get something called lassitude.  It is a specific kind of fatigue that doesn't lessen from sleeping, doesn't lessen from resting, doesn't lessen from any other thing you will do.  You can make it worse by say, moving, or not eating, or not sleeping constantly, but you can only rest and wait it out.  I am a single Mom with two kids and a dog.  How am I supposed to rest that much??

My ex and I discussed how he can start taking the kids more, especially during my upcoming sinus surgery recovery.  Yes, Peter Pan, you are going to have to be Wendy for a while.  He even laughed at that.  But if he takes them, they may miss a lesson or Scouts or something.  I am very careful not to over schedule my kids, but they still have activities!  I don't know how to do this.  I have been sleeping from about midnight to 2 pm this week (except for getting the kids off to school and walking the dog), and I am still too tired to get through dinner and bed time without ending up directing events from the sofa with a dark cloth covering my eyes.  Sigh.  

I did manage to get 2/3rds of the Christmas stuff packed up, in great part due to my son's extremely hyper mood.  He was so hyper he didn't realize how many trips I had him running up and down the stairs.  The un-decorating of the tree went by with only one burst of tears from A, which is pretty good!  I really was starting to doubt whether I would get them down at all.  Yeah!  Can I do the last third?  That remains to be seen. How tired will I be tomorrow?

My Mom is planning on coming over to help my finish the quilt I am making (and have been making, sort of, for the last two years) for A's b'day on Monday.  I am worried I will be too tired to do anything and it will really end up being the quilt that Grama made.  K's birthday party (rescheduled from November) is 5 o'clock tomorrow.  How will I feel?  Spin the wheel of misery!  What symptoms will you come up with today!!  
Wish me luck.  I can hardly wait for surgery so I can get some rest!!  My perfect scenario?? I spend surgery day mildly sedated snoozing until they cancel it due to lack of time, and I will just have rested!!

Off to clean the kitchen!

Symptoms:
"asleep" left foot and lower leg.  8
sensitivity to light 9
Fatigue 9
headache 7
pins and needles 5
brain fog ++++++
Oh!  And two asthma attacks!



Thursday, 5 January 2012

I may never stop talking

I am sorry to start a blog with the reason I am blogging, but where else would I start?  My two kids are a'bed.  My Havanese, Charlie is busy making a bed/nest out of the dirty laundry on the floor at my feet, and here I sit, on my laptop.  The dishwasher is running though!  My New Year's Resolution for January (I tend to make one per month, usually until about June) is to not go to bed without cleaning the kitchen.  I have a aching headache (not a pounding headache, or a blinding headache), so I justified not getting it completely perfect by deciding that my daughter "A" age 7, will have to clean up her Easy Bake Oven dishes herself.

I have had a pretty miserable day.  I let my kids stay home until recess because I could barely get out of bed, and regardless of the two alarm clocks that were going off, neither child moved.  Then I went back to bed until 2pm, where I got up, found my legs, made a shake, and barely had enough time to get dressed in time for school pick up.  Sigh.  Then I finally started up the Easy Bake Oven I had been promising (of which Charlie had the first batch while we were out), despite the fact that most of my left side has either pins and needles, and/or numbness.  We had fast food for dinner, and I left my son "K", age 11 to babysit while I went out to pick up my pre-surgery antibiotics.  Then I struggled through homework and showers, and finally sat-no wait-you have to clean the kitchen-down.  Oops.  Haven't made the lunches.

I have MS, since August 2011 (at least diagnosed then).
I have Asthma, which I have been hospitalized for many, many times, and allergic to pretty much everything.
I have Scoliosis, which is fairly mild, but I have to keep on or I get headaches (see above)
I have Endometriosis that doesn't really bother me since I got my Mirena IUD and quit getting my period!
I have Lichens Sclerosis, a skin disease.
I have Nasal Polyps.  I have had 3 surgeries for this in the last 7 years, and number 4 next week.

My psychiatrist thinks I am addicted to being ill.  I think there may be some truth to that.  Did I learn that the only way to get love and significance was to be sick?  Maybe.  Can I somehow funnel all my mental powers, and through way too much therapy somehow stop being sick through mental health?  Doubtful.  Is there truth to both of these statements.  Yes.  I want to keep track of my thoughts and symptoms and see if there is some sort of pattern to it.  My Mom has been trying to get me to keep track of my symptoms in a journal forever.  Well.  Here goes.

I like this.  It is like I get to go on and on about myself, and I don't have to worry if I am boring anyone.  I don't plan on really announcing this blog to anyone.  Maybe a few close friends and family, but really it is for myself!

Today:
Fatigue 9
Pins and needles- left leg, left arm, left side of face (not forehead), and right foot
Dizzy, faint on standing, every time.
Headache (neck out?-Dr on vacation) center of forehead, then left side of forehead, and left ear.
Sensitivity to light, and sound.

Antibiotics, Ammoxicillan, day 1.
Plus I may give in and take some pain killers, Tylenol 1's