The rest of July

I have not really felt like blogging.  I've been struggling.  Struggling to keep up a level of activity so that I don't lose it and resting in between.  But none of it has been very satisfying.

Taken from the Currimundi Life Saving Tower.  Lost a lot of beach!

There was the post-endoscopy elation and adrenaline that kept me wired for a couple of days, the inevitable crash and it has been a repeat of that up-down cycle ever since.  I even thought that I was going to be able to build up the distance I could walk but I was ignoring warning signs in order to last those three days.  I had huge problems trying to warm up my legs.  The cold was so painful and only artificial heat would do the job and I could sit on an electric blanket for hours before my knee and thigh skin would be warm to touch.  That symptom has passed the extreme phase now.  I am not complaining about the cold any more than S who is here once again.  Third day so far.  Uninvited.

I've also been very teary at times.  The very next day after the anesthetic was the worst.  I have been in a lot of bad moods but I have also taken another cut in dose of Lovan.  I am now only taking just over 1mg.  Yesterday I read some recent research suggesting that this very drug is also acting as an anti-retroviral which could suggest that I have been more unwell over the last two years because I have not been on a therapeutic dose of Lovan.  Yet I also read about how anything that interferes with seratonin is bad news.  It is so hard to know what to do about anything and that I find very disheartening.  It seems like no-one knows anything about anything and that the whole of life is guesswork.

Entrance to Currimundi Lake and Drop Zone

I was very pleased to have the energy to deal with my car.  It started with a flat battery while S was still here last time.  A night on the charger did nothing to help but then I found out that the charger was not putting out enough volts.  RACQ sent me down to the Kings Beach Service Centre to get it tested after me getting jump started and driving around a bit to charge it up but it failed the test.  It was six years old.  They charged $185 for a no maintenance battery with a three year warranty.  Well bugger me!  I was not expecting that much.  They reminded me about the tyres that were illegal and I decided to do them the same day.  Bob Jane All-rounders on the front with wheel balance and alignments paid for for the next 6 months cost $265.  That went on my credit card.  Broke fortnight and little chance of me getting up to see B for his birthday on Friday now if I was well enough to go.  He actually was doing a job at Roger's when S was here to babysit me through the colonoscopy.  He was there for over a week so the boys actually saw each other.  I so miss not seeing Cohen.  I caught up with Connor again on the Friday after hospital.  He went back to Kin Kin with S for the weekend and Roger returned him on the Sunday. 

Currimundi Lake at 8:30am

I have been able to get out with my camera several times and to the shops once (apart from groceries).  I went for breakfast at Currimundi Lake with Jan, took myself off to Happy Valley for bacon and eggs on the BBQ one cold morning and went for a bit of a stroll at Diamond Head so all in all July has been a relatively active month for me but it is not enough to give my life a sense of purpose - whatever that feels like.  I've forgotten.  In between the days that I have been able to get out for a while I have had days in bed watching movies.  At the moment I am also crocheting in bed - spurred on by my friends on the Internet.

At Diamond Head

I am finishing off July with a really annoying symptom.  I have had 6 days of a nerve twitching on and off in my left eye lid.  It is not bad enough for anyone to notice.  I still have not got any results from the biopsies.  I phoned last week so I had better phone again.

Happy Valley Breakfast at 7am

I feel a different kind of unwell today.  It started yesterday.  It is not just post-exertion.  It feels even more fluey with the heart-racing stuff.  I can't help wondering if S has brought a germ into the house.  He has been here since Saturday and may not be leaving until tomorrow.  He went to Brisbane on Saturday straight from Gympie via the train looking at a rental place he thought he was interested in until he went there.  He wanted to borrow my car and had Roger phone to ask me because now both of their cars are unregistered.  I said "no".  I let him use it yesterday to go to the doctor locally.  He wanted something for anxiety and came home with samples of Effexor XR.  It's an anti-depressant that I have been on in the past.  I don't know if he is going to stick with them but he is already so calm this visit.  He is not in any distress about anything.  A nice surprise.

Happy Valley

Relatively speaking, apart from the paralyzing anxiety leading up to the endoscopies, July has probably been the most active month that I have had this year.  Small improvements do not seem enough at the time and I am not getting very far from home before having to return and I have had to abandon plans many times by leaving the supermarket early etc and I am sick of taking photos of the same places over and over but I think I am supposed to be grateful.  I know many others would kill to have the July that I have had while they remain house bound but I want more - much more out of my life than payback for getting out.  I also have to admit that when I do get out, the housework gets neglected because it is always a trade-off.  I have not needed to use the scooter.

Zooming through Bribie Island across to Golden Beach and the Glasshouse Mountains

Lots of Lavage

This is getting really bad.  I only had 1 litre of Colonlytely last night from 6pm and I did not start moving my bowel until 7.30pm but it has not stopped since and the instructions say it lasts 4 hours.  At 4am I got up to have a cup of coffee so I put the kettle on before I headed to the toilet but I did not make it out of the kitchen.  It came uncontrollably in pulses while I just stood there.  I was wearing leggings (the only loose pair I have).  I couldn't believe it...after all this time, the diarrhea should have stopped.  I had to have a shower.

So now I am more worried than ever about getting up to the hospital without having an "accident".  I think I will be wearing a pair of 'Depend' incontinence pants.  I now have to drink 2-3 litres of lavage solution and have the diarrhea stop before 12 midday.  Do the maths.  10 hours from 6pm to first 'accident'.  It is 5.30am.   Add 10 hours and at least double the quantity of Colonlytely.  Now you can see why I worry.

You had better tell Mum that those pains I had last night on the phone only lasted half an hour.  She just rang at the wrong time and I had to hang up fast and run in the end.  I knew being 'backed up' was not going to go well once I started drinking the goop even though the 3pm laxatives did nothing, but I survived and could stop worrying about bowel obstruction half an hour later.

Fishing with my Dad on Port Phillip Bay

For the record:

• Do not necessarily expect a bowel motion (bm) after the tablets and magnesium citrate.
• bm started properly about an hour and a half after drinking first litre of Colonlytely.
• Avado (or Avano?) organics Nipple Care Balm (60ml) tube has worked well with no extra irritation.  It is all natural and contains certified organic sunflower oil, certified organic beeswax, certified organic avocado oil, certified organic Calendula-infused sunflower oil, and natural vitamin E.  It smells like honey. Very difficult to get out of the tube in Winter.  Leave some out on a dish.
• Other essentials include hypoallergenic baby wipes between each bm
• Do not bother setting up entertainment in the toilet apart from a radio because there is no time to use an ipad etc.  You no sooner finish and you are off to the bathroom to dab, clean, smear and wash hands.  You no sooner finish that and you are back on the toilet.
• Have lots of hand towels because you will be washing your hands a lot and wet towels are not nice.  A hand barrier cream is a good idea too.
• Leg warmers for Winter (not leggings).
• I am not an apple juice fan but a shot of apple or apple-pear juice used as a chaser after each glass of Lavage solution (Colonlytely) was welcome.  Have it poured ready so a quick exit can be made if needed.
• Drink hot water after magnesium citrate solution because it takes all your body heat and cold water only makes it worse.  You are instructed to drink a litre of water at that time.
• Hot drinks, black coffee, tea, Bonox, water are preferable to cold drinks in between Lavage solution too (if you can fit it in - all the liquid is very bloating ) which also lowers your body temp due to loss of electrolytes.
• I was not hungry when drinking all the liquid at night and in the morning but I am now (9am)

Endoscopy Eve

Talk about anxiety - no let's not talk about it but this heart racing is more nerves than POTS which has been behaving itself relatively speaking if I do not trigger another relapse from all the pacing I have done.  My mind cannot function like this when I have more than one thing to think about at a time so all the phone arrangements are over now and I get back to doing one thing at a time.  I am mixing up Colonlytely to drink. Only 1 litre of it today for the "afternoon" protocol.

I phoned the day surgery for my arrival time as instructed this morning and it seems I am first off the ranks tomorrow afternoon with Professor Sorrentino as my surgeon who is the guy Dr Peter Nash (rheumatologist) referred me to.  He sure looks nice and seems to be into Crohn's research going by that link.  

I'll be eating my last meal soon but I am not very hungry right now - I bet I am by tonight though.  I drink some magnesium citrate and take 3 biscodyl at 3 o'clock so from then on I cannot really count on getting a free (from the toilet) stretch of time so I had better start setting up the things I need down that end of the house.  I had given up trying to find something that did not irritate down there for the most part and was going to settle on paw paw ointment or vaseline until I found an expensive tube of nipple cream - all natural oils and beeswax.  You know how sore I get.

Drinking the goop starts at 6pm but because I am considered "afternoon"  I get to drink the bulk of it tomorrow which could mean that I will get to sleep tonight for a few hours before starting again at 6am.  I think I will aim for 5am but my morning gag reflex is going to be hindrance so maybe I will let my body wake up for an hour and get up at 4am.  I am worried that I will still be "going" by the time I have to leave for hospital.  At least it is only up the road and Jan will be taking me there and dropping me off.  But starting an hour early may give me some more peace of mind.  I have to fit in a shower and clean clothes before I go up to the hospital too which means I am going to need some "off the toilet" time.

I guess once I am there things will happen fairly quickly if I am first but I am more worried about the bowel effects at home here more than anything and whether I will remember to say what I want to say when I speak to the surgeon.

Kisses

My Mum and Dad

 That's a nice photo to remember.  I don't know where it is.

I am still stuck in the house with gut pain etc wearing loose clothes.  S came down last night to go Late Night Shopping and he is going back tonight.  Connor should be here any minute after school to visit me actually not his Dad, who was actually thinking of doing a runner back to Kin Kin before Connor even got here.  Instead he has gone shopping but will take him back to his mother on his way home.  That is the latest arrangement but it could change.  

Also I found a couple of stray old black and white negatives and i wonder if you (Mum?) know who these people are?

 Back to 1979 when I fell pregnant in that Hot Rod visiting you guys.

Waiting to feel better

Hot Chocolate worth L$25,000

Spotify

I've been having a couple of days off

Yesterday's Crash

Yesterday, I was going to post how well I was feeling considering it was 48 hours post hospital clinic day.  I had no sign of difficulty just doing my slow morning routine of coffee, computer and breakfast and a shower.  So I decided that although I was feeling tired I would go to Aldi and then drop off a little package for Connor and who knows what else?

By the time I got upstairs to Aldi (via a lift) carrying my handbag, my camping stool and 2 empty recycle bags I knew I was mistaken about being well enough for this.  I reminded myself that I could sit down on my stool if only I would. I meandered up the central aisle where the everything but food items were.  I was looking for the leggings.  Something I could or would have to hack at its waistband because I cannot wear any sort of pressure on my stomach.  That always means something cheap.  I am still convinced that nothing can I wear!!! Clothes Hurt

Today, after coming home and crashing in bed after yesterday, I was brave enough to go out with Jan for lunch only because the opportunity was there.  We were both starving and I had been helping her with her new laptop this morning.  I was offering Easy Mac but we ended up dining on Barramundi and prawns with garlic cream sauce.  We splurged a little for us at our socioeconomic level and I think that is what we wanted to do today.  More so Jan, but I did not want to let her down.  She was driving and we just went as we were.  All very impromptu.  I tried to back out of it at one stage but I went.  I was wearing a nice skirt and ugg boots but the skirt was already becoming uncomfortably tight and I had already hitched it up over my boobs until that became uncomfortable and sore and had also tried rolling the waste band down so the looser part of the skirt was giving me more freedom to breath without skin and tight fabric making contact.  but you know how it is when you are engaged in conversation.  You put up with things.  So I went out with an uncomfortable skirt and came home with uncomfortable wind soon to be followed by cramps and diarrhea.  Was it the eating with a skirt on or the garlic cream sauce that caused that sudden episode?  That is the question.

Back to crashing at Aldi yesterday.  I felt "horrible" - racing heart, light-headed with a compelling desire to drop down to a squat whenever I stopped to look at something.  I wanted to try a pair of those ski pants on with braces which were reduced half price or more because I really need something thermal to wear on the scooter in Winter if I am every going to go out in a Southerly wind or more precisely South Easter.  The one the fishermen dread.  We get a lot of them so it made sense to at least try the XL but there was no way I could push myself to.  I moved and felt a little better but I was desperate to sit down.  I find a corner and plonked on the stool for a few minutes and then decided that I would have to head straight for the checkouts with what I had grabbed already.  The queue was long so I had to keep shuffling along on my camping stool.  I got some looks.  It should have been a scooter day but it was too cold to use the scooter to make a half hour trip into an hour and a half trip.  Once I had got back to the car and sat I wasn't light-headed but all this over-exertion had now become ammunition for another crash in another 48 hours time.   I was not really suffering while I was sitting in the car so I drove off to deliver my little package to Connor.  It was nothing but it now included a microwave popcorn just bought from Aldi as I headed to the checkouts.  NO-one answered the door in Edmund Street so I hoped that they were not going to be away for long and allow the package to remain in the letter box all night or even longer.  It rained last night and it will rain again tomorrow.  I sent an SMS to the phone number that I had for Ange to let her know that there was a parcel in the letter "any".  Yes, letter any.  Stupid predictive text on the mobile phone would not let me type "box".

After delivering Connor's parcel I came straight home.  There was no way I was going to be able to get to Dick Smith without being stupid.  If I came home and rested in bed for the rest of the day I had half a chance at an OK tomorrow.  So that's what I did and I finally saw the benefit of having a TV in my bedroom.  I needed that electric blanket.  I was cold to the bone and it took two hours sitting on it at it's highest setting before I began to become conscious of beginning to overheat.  One less stress to cope with now that the body temperature had sorted itself out. I had a pretty restless night because I had to keep getting up to go to the toilet.

I have been having the symptoms of a urinary tract infection but my urine sample showed no sign of bacteria which means I did not have to get a prescription for antibiotics filled yesterday.  Dr Craig asked me to phone yesterday for the results.  The problem is that this pain has been going on for a couple of weeks along with the other urinary tract symptoms except for burning pain and having a fever.  I have pain down my tubes - I don't know what it is but it can be very sharp.  I have pain under my ribcage still and all that is connected with the heart day in the ambulance.  It seems I am accumulating more and more pain and each pain syndrome is just as inexplicable as the next.  It seems interstitial cystitis is part of fibromyalgia and chronic fatigue syndromes. The only way to be diagnosed with it is by exclusion which means lots of bladder tests and biopsies and scopes just to find out you have got something that used to be classified as hysteria (again). Maybe symptomatic relief via a GP is still better than going through the process of getting diagnosed since they will culminate in the same treatment.  There's never any cure for "syndromes" coming out of medical circles so symptomatic relief is all you can get.

Irritable bowel syndrome has a similar diagnostic path.  You get barium enemas, scopes, swallow pill cameras, and send off stool samples before you are diagnosed with irritable bowel syndrome.  If you never had the investigations that proved there was nothing wrong, you would never be able to say you had irritable bowel syndrome?  The system seems corrupt.

To me it just proves that the autonomic nervous system or vascular system must be involved because nothing else is finding answers. Speaking of vascular.  This year I have a lot of angiomas in my skin.  I keep forgetting to mention that to anyone.  Back in the past in the Private Health Insurance Days, George Tucker would have noted that sign as predictive of liver problems.  I don't think they ever found any problems with liver function blood tests then but angioectasias of the stomach is also vascular without there being any implication of liver involvement. I wonder if I have any new angioectasias in my duodenum since the last lot were laser sealed via argon plasma.  I guess they will get looked at on 18th too.  And then there is that gastric lump they found.  It has been a few years and I hope that it has not grown.  They ended up calling it a pancreatic rest do you remember after the GIST scare?

Killing Time

If you want to make your own animated gif then go here - http://www.gifpal.com/

The cleaner is gone now.  Only Jodi came today.  I am getting a few photos from the camera memory card and I really wanted to show you this.  S gets around with this suitcase full of food as he tries to find his home.  He asked me if he could have it and I wonder if it looks familiar to you?

It sure has been around.  Look closely on the next photo and you will see who once used to own it.

It was probably yours Mum before it was Aunty Betty's.  I must have left Melbourne with it.  I guess it ended up in Jandowae if not Perth, then Toowoomba, over to the Coast here and now it is in Kin Kin waiting to go to Brisbane.

While I am at the photo folder, here's some more:

Gone back to "bright" for my Winter bedroom.  I used to hate this set.  I like it again now.

New Bitumen finally on the road

This one is a surprise I found while sorting and cleaning up.  It was inside one of the kids' books about motorbikes.  I suspect B actually.  It must have been there for years!!!  I might go and smoke it!

Cleaner Day

I started prepping the house for the cleaners yesterday but undid most of it over the next 24 hours so I have to do it again this morning.    That is the worst thing about HACC services.  They are not allowed to lift, bend or work.  That last one was a joke but it seems partially true to me.  But it does not make sense to me that I have to lift the vacuum cleaner up a step (and it's a heavy Kirby) from the garage or else leave it propped up against a wall all fortnight because I cannot manage it.  When I am well enough, I have to move furniture often just off to one side, so that they can get the vacuum cleaner in a spot that they didn't get to last time that they were here.  They don't move furniture so you can imagine the build-up of dust and spiderswebs and worse over time in places where the occupant does not have bursts of energy like I do.  No-one gets into corners so once in a blue moon I have to use the edge attachments regardless of the cleaners' efforts.

I have to move my Cosy Toes heater with it's trailing cord and many other cords in various rooms of the house have to be unplugged and rolled up out of the way.  The ipad and phone on charge, the massager, the bedside table which they will not move is better just dumped up on the bed temporarily etc etc.  Brian next door puts the chairs up on the table for them so they can get under easily.  I don't.  But you cannot help fearing that they will damage the wood work  because nobody cares for your own stuff like you do.  There are marks on things.

I'm just having a sit down before the next spurt when I will collect up things in my tiny bathroom so they can get to the basin and floor.  I wonder what they will do the big fluffy mat (of Auntie Betty's) which I have left in what is now the TV room.  I'd love to see it get vacuumed but they might lift it up to get at the lino underneath and wash that instead.  I wonder if they will do both.  It is not easy to vacuum getting sucked up all the time.

Speak of the devils, Kabbarli just phoned to see if I wanted cleaning done today because one of them saw trucks here yesterday. I guess Anita and Jodi were hoping for another day off.   It was just Unity Water putting in a driveway to the pumping station.  Last fortnight I cancelled because S was here and I could not deal with it all.  Actually I don't like cleaning days.  They are worse than wheelie bin days.  It's the deadlines and the uncertainty of when or even whether they are going to come.  They are just as likely to cancel because they have a function of their own.  And when I am really sick I hate them coming, the last thing I want to do is smell smells, hear noises and be embarrassed by my lack of being able to pick up the cords and the foot stools etc but it is a catch 22 when you need things cleaned.

Today turns out to be fine with no sign of the rain I heard about so if it wasn't for the cleaners coming, I could well be out of here doing something but on second thoughts, I really do need to take it easy today and stop myself from ducking out before they come.  I can hear my body complaining but I could ignore it.  I know I feel both tired and roaring to go at the same time but each time I get up and do a few things, it becomes more obvious that my heart is straining.  Today I will be able to sit in the garage while the cleaners do their whirlwind half hour splash around. What they can gain in speed means they get to knock off early and they will be thinking "Thank God it's Friday". I don't think I need will need to sprawl in the car again but I know my body is going to be demanding intermittent horizontal times today.  Will get one horizontal in before they come. My back is sore just sitting up straight to type this at the desktop.  My gut is sore from doing too much yesterday and because I am wearing PJ's.  It's warming up though and soon I will be sitting in front of the sun streaming in the front door.  My glands are up a little more today too but all in all, so far,  I will survive! 


The reason I was thinking of "ducking out" was to get to K-Mart with that darn top S bought me.  The stand of $8 clothes is probably gone by now anyway but I never did tell you that the next replacement ended up being back to a size 12 top again.  I did not get my size 14 but I bet there were none. I often wear size 16 tops nowadays.   I'll keep it for you Mum if you like black with white little polka dots.  I'd better wear it once or twice in front of him but it is not the weather for it yet.


Yep, definitely feeling it today.  Heart racing more just from eating breakfast.  That happens a lot.  Digestion must put quite a strain on our bodies when it is already straining.  This urinary tract thing going on is driving me a bit nuts too.  I am trying to avoid taking the antibiotics until I get the results tomorrow (hopefully) because I get so many gut problems from most antibiotics and then will be likely to end up with thrush as well, all getting sorted just in time for the colonoscopy diet but something which I hope is not going to have to happen.  I have noticed in the past that once I have antibiotics and then finish them, I am even more likely to catch something and more likely to need them again.  Generally I avoid them but Dr Craig yesterday was not so sure I should about this but agreed to me waiting till tomorrow.  Something sure is playing up but I have not got "burning"....just urgency and frequency and pains down both sides (tubes).  Sample looked clear not cloudy and I don't have a temp.

Adrenaline No No

Yesterday I remained in high stress mode, heart pumping, waiting for the Pre- admission clinic to be over, until I got so bored and uncomfortable having to sit and wait for 2 1/2 hours before I got called up to get the blood tests, see the nurse to get my history and get an EEG and finally finish with the anaethetist, that I had turned into an unfeeling zombie.  I wasn't the only one that was slouching towards the end.  The clinic was packed. Each with their own story.

I asked Karla to drop me off and pick me up after I phoned. She dropped me there at 1pm and I got home at half past four. She phoned the hospital twice wondering why I was taking so long. I didn't really want her to do that because each time staff would have to come and notify me. I found out she is hospital phobic so I will not ask her again, not that she stepped outside the car. I was trying to pace by not being forced to walk too far from the car had I driven myself.

I met a lady there who I thought I recognized and would you believe it was Jo-ann White from Edwin St where we walked on our way to school. She remembered the same teachers from Box Hill North Primary School and the horse in the paddock on the corner. It is strange but I do not remember the kind of friendship we had, if any. She has a new name now. She wants to keep in touch. I won't be putting in much effort because she lives in Nambour.

Today I got off to a slow start as usual but I could not stop the pace once I had started. I have done more today than I've done in one single day for so long and I guess I could be riding an adrenaline high triggered by all the nerves yesterday. I wonder how tomorrow will be?

I started tidying up, started cooking tea, went to get my hair cut and go to the doctor for a urine test, raced out to Pelican to get money out via a 5 minute race around Coles. It is so great not having problems from being upright for too long. But I am not up to standing still for long.

I was getting that telltale warning feeling but I kept going without feeling yuk for too long. I dyed my newly cut hair and it looks pretty orange to me. Especially on the central greys. Bright orange. I felt pushed into that by the weather forecast which was predicting rain for a week (again). What ever happened to dry Winters in Queensland?

I hope tomorrow is not a Pre payback day. I am in a lot of pain tonight but I'm handling it.  I've just got to do the darn wheelie bins because I did some pruning today too.

June 20th

For Mum who thinks I hurt more because  my weight is a huge burden on my body.  Note the Genie bra, however most days even it hurts so you will still catch me braless all too frequently.  Sorry Mum.  Blame fibromyalgia.

S has passed through here twice on his way to and from a night in Brisbane. He is hoping he is selected to share at one particular house. He wants to move in case you haven't guessed. Kin Kin doesn't do it for him but I won't let him move in here except as a visitor. It is the same next door. Flora's daughter comes every weekend because Flora cannot live with her for long but there must be a safety with mothers they feel. T is bipolar. S keeps asking if he can move in. And I'm too tired to finish.