Mixed Feelings

Yesterday I was pretty down about being here and it made me introspective. Today I'm quite elated (bluey is already on the road and my stats are good to go) but I'm still introspective.

I was walking another 5 laps to get my sugars good for the before lunch test and I stopped to chat to a fellow in a bed in a quad ward. He's there by himself and that's like me except the large room makes it so obvious that he's alone. Anyway I teased him that with a room so big they could at least give him a lounge suite, big screen TV and a pool table.

We talked and Noel told me a bit about himself. 4th round of cancer, got home last time for only three days of remission before he was back in here. He's doing radiation and chemo but "nothings working this time" He was pretty matter of fact about his prospects and had a very calm demeanour.  I shook his hand and told him I may see him when I'm next in on November 10th. Maybe not.

I'm put in mind to tell you my patented method to getting through a hospital visit. I did this years ago and I won't look up the list but you can, its somewhere in the back chronicles Feb,Mar,April 2007 maybe. I'll do it fresh.
1. Get off your ass. even if it's only a walk to the door of your room. Do it once a day at least.
2. Wear your own jammies. Its depressing being in those hospital gowns. If they say it has to be the weird   gowns....buy your own in bright colors.
3. Even if you have to wear jammies all day change in the morning have a set for night time and set for daytime. Serves several purposes. You feel cleaner even if they are just last nights ones, its moving from day to night. You are marking progress! People notice that you are making an effort and they are encouraged and then they encourage you. "Get up out of the bed your lazy slob and get dressed!" My mother voice in my head.... but she never said it like that, more like "Don't you think you would feel better if you got up and changed". Thanks Mom.
4.Wear a loud shirt if you can I recommend Mambo you can still get them online. The louder the better. It absolutely works. Bright on the outside bright on the inside. The benefits are many fold:
-you make people smile that makes you smile.
- you feel as if everyone (they are) is looking at you and that means that you are being monitored and kept safe.
-Little kids visiting are made to laugh and smile and it makes their scary trip to the hospital better and that makes you feel better.
-It opens up a conversation with nearly everybody and that's one more moment that you are thinking about something else.
5. Be especially nice to the staff . Smile and chat to the cleaners, the catering staff and especially the nurses. They don't always have time to chat but when they do they can be most unexpected in their amusement  value. Besides they have the keys to Kingdom. Cinnamon on your porridge, making sure your favourite herbal tea is on the trolly, extra towels  and mostly just smiles.
6. Always and I mean ALWAYS order the soup! It can be a sauce for the main dish. It may be the only thing you want to eat. it may be that its just the extra nourishment your need to get strong and get out.You don't have to eat it but it there is you need it.

more later
Chris

Don't get around much anymore

I'm feeling the weight of time passing slowly today. ...

First the good news:
I did get out yesterday and I atempted what few men have EVER achieved but I can't tell you yet be cause its a secret from Bluey.  I also got me some great shoes from Gilmours Comfort shoes. Another pair of SAS shoes they are super durable and they look good and above all are so comfortable and I have been trying to get them for a few months but could not get them online in Australia. I also got some hair product for Joyce and got her a new iPad cover. Walked the length of Garden City mall and  cabbed back in time for arvo rounds, so all good.

This morning has gone slowly with several walks around the halls.
 Its two long cooridors with rooms on the outside and utility rooms in the center with several cross halls and if I figure 8 back and forth and do five laps it adds up to 1 kilometer.
No not about one kilometer but exactly one kilometer. the carpet tiles are excatly .5 of a meter and I have counted the lap several times and done the math. 1000 meters. I do it at least twice a day and I've done it three times already today and its only 2.

The good news is my sugars are down! between the cessation of the mega Prednisone, massive walks and bombing with insulin I've got two good readings in a row but today's smaller dose of Prednisone is kicking into my sugars as we speak so we will see in a couple of hours if the massive  (neuclear deterent size ) dose of insulin I got at lunch takes care of the anticipated rush.

In fact lets check my sugars now for fun.

Heres the video and the BSL has dropped even more so that great.

I will continue this as I upload the video.

Anyway I got a real nice letter for the wifes's ex boss. Saying that she and her charming sailor husband missed me today at the Tour De Bay. It was nice but it landed right at the time I was walking the halls and thinking about people that won't be getting out of the hospital Tuesday morning like I will be. It made me think about Mazlow's heiarchcy of needs. My base needs are pretty looked after here.  I don't have to cook  for me or Bluey, it just arrives and pretty much on exactly the right time, (remember that us Diabetics need a routine) its nutritions but not veryadventurous   its perfect for this story . I get a good room with my own toilet shower etc. They check on me every two hours and take my vitals and record it so that any patterns can be observed, again perfect for this story. The staff are very caring and like to chat a bit and to see how I am but they all have a wonderful life outside of this place of work so aren't likely to get very deep into my issues, again perfect for this story.

This story being that: my needs, as defined by this guy in the past, are being toatally met! But the higher needs are not. There are no good stories with my dinner, nice wine to lend a warmth, no good talks with friends and above all that ....companionship from my best friend. I can hold out another 24 hours till she gets here but its just a bit slow right now.

I feel a bit bad that I'm complaining about this because its for my own good in the long run. It won't be for much longer and after one more round this should be over for good if it works. Its just that this is the third time I've been in this hospital this year and I know for sure I'm coming back on November 10th so I'm looking at all the other poeple that will remain and wonder if this is my fate for more than a wee visit from time to time. Makes me think.

A glass of crisp wooded (yes I'm oldfashioned) Chardy on the deck in the afternoon light with Bluey and Floyddie would be most welcome.

more later
Chris

Got a hall pass

Convinced my two doc teams AND the nursing staff to get my Intragamm into me this morning and let me go out of the hospital for the arvo.

The Boffin was reluctant when I said I wanted to go out to go shopping. I heard two stories...
Another bloke on Prednisone went out shopping for a car and bought two because it was a better deal! And another bought 800.00 in tools from bunnings that he didn't really need.

This last one is more me but I assured him that the things I want have been on my list for a while. New shoes from the Children of the Revolution, SAS brand and I can't seem to get them online and I'm getting exactly the same shoes as I have now they lasted years, are still comfortable but have worn down soles. An ipad cover for Bluey and a hair product she needs and can't get in HB. and the real reason I'm making this escape to get a pressie for bluey.

News flash the IGG wan't booked and the blood bank will have to get the Dr. order then get it typed and then get it over here. So this trip may be off. Maybe I'll do it tomorrow. Sigh

I can shop just as well on Saturday but ...I Had A Plan! oh well. this is my life now.  Now where's that lemon juicer, I've got lemonade to make.

more later
Chris

Less Medical More Philosophical

First off can I say that I love a word that has not one, but two f sounds from the ph spelling!

First off although the dessert pocket is dead.  and I quote myself to my Nephew Little Bro who had a moment of silence for my dessert pocket and this is also for Regs who said "Noooooooooooooooooo, I grew up with dessert pocket stories"


Wait a minute I already did this quote in the last blog entry. Predno Brain I guess. Anyway in answer to all that I present arvo tea today a special treat.

It looks huge but in reality its just bite size and exact one serve of carb which is what I'm allowed for a snack.

I'm down in the coffee shop blogging and chilling and thinking that I'm going to be here one more time in two months to start this melthyl Prednisone one last time, for this Ponticelli Protocol. Hopefully this fixes up my kidneys and they pass more creatin and stop leaking protein.  I already understand that my treatments for the Myleo Fibrosis  are at slight odds with keeping my Kidneys healthy so I may be doing this back and forth for a long time. the docs are vague on the future. " Lets just finish this protocol and we'll see..." " If this doesn't achieve the improvement in the kidney function there are other treatments" " But we know that one we tried already caused un wanted side effects"

So even if the prednisone makes me a bit agitated, (Watch the retaining wall get fixed up tout suite) its better than dialysis, or worse. I'm pretty lucky I'm not tied to a bed, I don't feel sick just a bit spacey. And the biggest side effect is that I'm a little chatter box and talk to every one and am bright (mambo shirted) and happy and they respond with nice support here. The nice lady in charge of the catering up here on the floors brought me my own vial of cinnamon for my porridge.

-------Remember these five dashes, they might even be called em s my scrabble friends will no doubt correct me on that. Anyway they mean a separate discussion from the main body of the thesis.

--------Hospital food the best thing that can be said is 'it keeps you alive' this food is better then some but its hard feeding all these patients with diet special needs and all at the required times because we all have medication that needs to be on time and that is related to getting the food on time. Some things are even good and I have discovered that you can right on the menu special requests and you may get them, My diabetes diet comes with ticks boxes for hot porridge or a range of cold cereals, toast in a range of breads, a range of yogurts, canned and fresh fruit but my choice of porridge gets boring so I wrote eggs sauages and toast one day and got it! Any way I wrote cinnamon last time I was here and got a note that it was not available so ask Simone if it was possible that this huge kitchen had no cinnamon an hour later she walks in with sugar cinnamon and plain cinnamon, Lengendary! 

But I miss my best friend and she misses me. Love you bluey!

and I my Floydd, my dog!

I just now got a text from bluey with ahd picture of Floydd after he played and went in the dam. Damn he looked cute and I know the photographer is cute.

This right here is a totes beautiful eg of My Cosmic Life. I say I miss them and there they are, on my phone! This is a wonderful moment and I don't care if its Predno fired.

I'm going to miss the Tour de bay

I hope I'm not going to miss the Mentor Program special event at the botanic gardens.

And I'm going to be able to get back to the Lesser Wall of Chris and the Stairway to ...the back door.

More Later 

Chris out.

Back on the Juice

I'm back in Hospital in Brisbane getting intravenous Prednisone at 20 times the amount I have done before and you all remember what it does to me. Hang on babies we are in for a ROUGH ride.

I got the first of three giant doses this morning at 8:00am and its 4:00pm and I haven't felt too bad at all but there may be a cumulative effect so we will see tomorrow but there may also be (I hope) a threshold for the crazy factor.

I'm already hungry as that is a side effect and my blood sugar has risen as expected but the Endo team have  me jacking more insulin then the usual so we may have a handle of that but they see me four times a day to check my blood test and make a decision about the next dose. I'm really lucky I have some great docs and while at hospital I have Registrars, Interns, Residents and Students as well. This time I'm getting them in small doses they haven't been traveling in packs but so far I've seen one renal and three endo docs.... today! I'm getting my moneys worth.!

I pay via my health fund that I got when we first moved here so I've been paying in for 17 years and now I'm getting the support. Anyway we get full cover for a private room and three months ago I got a bed in a quad room :(  and last time I got a single with a shared toilet :| and this time I'm in one of the carpeted, including toilet, single rooms  :). Next time I may actually get a room with a view ;) but I'm happy as a clam now cause I have great care.

Speaking of great care I just got a visit from The big Boffin AND his Registrar AND His resident!! They travel in packs again! Good review of all my levels and they are good or heading in a good direction. Except the blood sugars. The Endo team have that in hand I believe. We talked about the end of this little adventure and its up to the Endos to decide but they think Monday. The longer stay is because I'm going to be doing a month of my smaller dose of Prednisone and we have to get the dose for that right first. I'm to be released if we get the balance started on Saturday ( will still be messed up by the Friday IV Pred),  then the Sunday balance near perfect then home ward bound. Bluey was very disappointed as we had thoughI would get out on Saturday. but she has rebooked to come down on Monday.. Cross your fingers.

I'm a bit wired so I've been walking the ward in my fish pants and my best Mambo shirt, the one with the skeleton on it looks like i'm wide open,on show. Lots of comments and I'm having some chitchats as I walk so that's good.

My Nephew Little Bro has been in touch and says he had a moment of silence for my dessert pocket. People please don't despair the dessert pocket was there when I needed it . I told him...

In the past there was a time for titans....  a time for our heros to be larger than life but there comes a time when we have to put away the giant organs and face real life. .... the Dessert Pocket Had To Go.

 I'm working with my diet 2.0 and its going to be a great life and I will eat dessert again but just not as we have known it.

Have to go do my pre dinner blood test and get the dose sorted as I need to be ready for the dinner trolly cause....

Nothing  stands between me and my dinner when I'm in the 'Sone'

More later
Chris
p.s. Next post will be on the bigger picture as I had a long talk with the Boff about what may happen.