12 of 12: August 2010

….So here follows my 12 photos taken during today, the 12th day of the month of August. Not quite a usual day as we are on vacation in the Californian Desert….

I’ll also do my best to not include too many swimming pool, food and margarita shots-yes-I’ll try-but I can’t guarantee it!

1) I woke up early, around 6am, but only because my Sister texted me from the UK! My morning ritual here in our hotel suite is to walk into the bathroom and switch off/disconnect E.T. my POC. As I sleep with oxygen we always put him in another room so we don’t hear the hum and click he makes. The bathroom is large, cool and a perfect distance for my 25ft long cannula!

2) I then switched the kettle on and started another morning ritual here. That of emailing the Family our daily photos and expedition jaunts. Yesterday we went to Idyllwild. You might like to read about it here on my blog and here on my 365.

Then I went out and about with my iPhone and took the following photos of local things of interest down the Palm Springs Strip.

3) This is the fountain and bronze statue of Sonny Bono, the one time Mayor of this city.

4) Another Fountain: This/these are outside the little museum downtown. We have always loved this spot. It is right opposite our favorite Mexican restaurant.

5) Whoever Miss Cornelia was, she apparently lived here in this house-now a local landmark and a living museum. Kind of ‘Little House on the Prairie’ meets Palm Springs.

6) LG’s Prime Steakhouse. My adopted big brother and our best friend, Chip, works here. Really good juicy fat American steaks! Am I sounding like an advert for the joint?!

7) Looking down the bottom end of the Strip (Palm Canyon Drive)

8 ) Elvis’s Star. It is on the pavement outside the old Palm Springs library. Did you know Elvis and Priscilla had their honeymoon in Palm Springs? You can still take a tour round the old house, in fact I think it has an open house this weekend.

9) This is the water wall in the newly renovated Hyatt Regency Suites hotel where we stay. It is behind the jacuzzi and makes a lovely backdrop especially when lit up at night.

10) Thursday night is Street Fayre night. Palm Canyon is closed off and becomes a myriad of stalls, farmers goods, musicians and food tastings. We love it and go every Thursday when we’re here. I particularly enjoy the free jerky tasters.

11) We thought this was hilarious-the temperature was still over 100F at 7.50pm and this poor stall owner was roasting his kettle corn in an enormous scalding cauldron, complete with a full face visor and leather gauntlets!

12) Dinner at the Chop House, at the end of the Strip and the  end of the Street Fayre. These were our pre-dinner drinks! Sorry-I couldn’t refuse one margarita (and beer) picture!

….Of course the noticeable difference for me this month is that my location is Palm Springs, California!

If you’d like to read other bloggers’ 12 of 12′s, go to Chad Darnell’s Blog….

Sunny, Stingy!

….This is what I looked at whilst lounging on a raft in the pool, yesterday!….

Unfortunately, just as I was nodding off for a nap, one of the many desert critters decided to nibble my foot. It got thwhacked by J and promptly died-a wretched wasp!

Luckily for me, it did not sting me in a particuarly thin skinned place, and the bite only swelled up a tiny bit, whilst stinging to high heaven. Also luckily for me I am not at all alergic to wasp or bee stings, unlike my Mother! Plus, with a decent amount of Pred permanently in my system, it didn’t get a chance to cause any sort of a reaction!

Best treatment for wasp stings has been found to be a big frozen strawberry margarita-certainly numbed the pain!

But we had great fun with our friends who we will see more of today-going up to the spa at Desert Hot Springs. J and I are still very much in necessary relaxation mode and apart from a trip to Cabazon (the factory stores), on Wednesday, are still acclimatizing.

My lungs are working hard to degunk. I have a filthy cough at the moment. This always happens for a few days then things settle down. I have used my oxygen more in the evenings and overnight of course, although I managed to really drop my SATS swimming yesterday (86%) so I’m going to need to monitor that more-but I generally don’t take my monitor with me when swimming at home, so it might be my norm. My PFs are up-I have managed another 312 just now. I have also found my need to neb is already less. But again, I can never get lazy there, must always be prepared and have Baby Omron with me!

….So far, so good. The weather is ‘cooling’ for the weekend, it’ll be mild at about 108F, they’re saying!….

Desert Sun Time!

….All is well, we are here and settled….

This was the plane we flew out on yesterday, from Heathrow to Los Angeles.

Security at LHR was a breeze-didn’t even have to show my paperwork this time-they just swabbed my POC and the wheelchair, and we were through.

It was a good flight-a little bumpy at times with the jet stream, but United looked after us, well me, brilliantly. I felt  pretty bleugh towards the end of the flight but I had manage to doze/semi sleep for most of it to conserve energy and make the best use of the howling gale in my nose from the airline oxygen set up!

Our second flight from LA to Palm Springs was a turbulent 35 minutes of being buffeted as the cooler coastal air hit the high hot desert thermals. Mum and Dad call this plane “Lawn Mower Airlines” We think it was more “Pneumatic Drill meets Kamikaze Pilot Airlines” Much more up and down then Space Mountain. Sick bags at the ready!

We stepped off the rickety prop plane onto baking tar mac with an air temp of 112F.

Grabbed our luggage, leapt in our hire car (large microwave, having been sitting in the sun all day at the airport) and drove the 5 minutes to our hotel.

We feel we are home now. This is our spiritual home. We hope our friends staying in our house in London will be enjoying our home there whilst their decorating is done, as much as we are loving our time here.

So after a meal and meeting up with our friends last night, then a good but shortish night’s sleep due to the jet lag, we have woken up ready for the day and our adventures in God’s own Californian Desert Sauna!

And I will leave you with this video of why we love this place so much. Just look at that view!

….Going to give my lungs and my cough a bit of a workout now in the pool-need a swim and a good stretch out….

Hand Luggage!

….Well, mine isn’t so much as hand luggage, as a wheelie suitcase!….

((@__Kerri: I’ve tried Ziplocs, even multiples of them! but they simply weren’t big enough! So….))

This trip I have progressed to a shoe box full of my packaged drugs. The complete list of what I have to take, and enough of them to last a week longer than our actual trip (just incase another Volcano blows it’s gasket on us!), can be found here.

But I have devised some methods to save on space in this already large hand luggage case:

• I choose to count out dossette boxes of all my everyday routine pill meds-4 weeks worth of them-and I keep a copy of my prescription with me as that means I am without the original packaging for many of my meds. It would simply be too much to cart around. If they’re unhappy about my being without packaging, at least I have my prescriptions and a hospital letter to show them.
• I also find that by emptying out the inside packaging from the boxes of nebs, I can break them into singles and get 40 nebules in one box, minus the extra and excess packging-that saves on space.

Just look at what I chucked out by doing that:

It is always a bit like packing a quart into a pint a pot, as we say here in En-ger-land, but I am pretty well practised at it!

This trip is requiring a myriad of extra wires and chargers though! I need 25′ of oxygen tubing for hotel rooms-plus my standard long one for the plane-which has a special airline oxygen tank connector on it, which United kindly let me keep (need one, ask me, I’ve got about 5 of them now!)

I have the charger for the battery belt for my POC, and the charger for the mains unit-both with their US leads attached (luckily, they’re lighter than the UK plug leads). Plus I have the charger that runs off the car lighter socket. Then I have the charger and lead for my Pari neb, plus my Yellow Submarine Pari neb unit (currently behaving himself again!). And, as I still have cylinders to use up in Palm Springs, I have the conserver unit and lead from my cylinder set up here to take.

Julian has already reminded me that if we happen to have a dust storm or a thunder shower in the deepest Arizona desert, it would be better for me to use my cylinders up, so we will be carting those from California to Arizona in the car too.

And apart from all that medical stuff, and my Medical Forms, Fit to Fly Letters, Prescriptions, etc etc, I have two Jumbo Crosswords, sellotaped onto a large sheet of cardboard-because I am a crossword fiend-and it helps me to drop off to sleep on the plane when I sit back and stare at them!

….This bag may be full, but it is within the size limit and incredibly, doesn’t require a Russian Weightlifter to carry it!….

POSTSCRIPT EDIT:

….And you know what I totally forget to say was also missing from the above hand luggage case…

• The MacBook I am currently typing this on! Plus it’s charger!
• And the iPhone charger my iPhone 4 is currently plugged into!

….Phew!….

My School Year in Stats!

….I cannot quite contain my happiness and relief this morning!….

It seems this Academic year has flown by-and interestingly enough, when talking to colleagues yesterday, many of them agreed!

I also seem to have performed better than ever this year as far as my long term illness and frequent absence goes. There may be several reasons contributing to my now good attendance record, but none as important as the fact that this year, more than ever, I have loved my job. I’ve had a new Head of Department-the most amazing lady who has been a rock of support for me in every second of my days. I have also had a GTP (Trainee Teacher) working alongside me and teaching several of my classes from early on in the year, which has meant that my time table has been less than it would or should have been. She has not just been a superb young teacher in the making (she was passed with an ‘Outstanding’) but she has been the most immensely wonderful company and a true friend.

So to Sue, and Lyndsay, if either of you read this, may you both blush and burst with pride!

But of course, I have had my moments this year, too. I’ve been suffering from an increased amount of air trapping-weirdly and particularly on Wednesdays!. I managed to sprain my ankle way back in October, and hobbled around on crutches for 2 weeks. But the most marked improvement in my treatment has come this term since early June, when I was put on overnight and now all day oxygen. There is much truth in saying that at the time in the school year when I was most likely to be flagging at my worst, I was beginning to feel more rested after better nights’ sleep, and more energy and less SOB during the day. what an ingenious turn of events that turned out to be. (And I continue to be much more stable with my new oxygen regime)

Now for some stats!

I work 3 days a week: If I have 2 trips to the restroom and ride around on break duty etc, I probably scootie a km a day.

Therefore I have scootied approximately 123 kms around school this academic year!

In the 3 terms I have had a total of 3 days off sick. I have been given leave 3 times to attend hospital appointments. I have missed 3 days due to sources out of my control (that volcano!) and this term I have also missed two early morning meetings, and two 1st periods due to my asthma.

Not a bad record for someone who has a rather difficult to control asthma condition.

(But I don’t think I can attempt to count up how many migraines I’ve had-that is too depressing!)

People have noticed how happy I seem. Well, how could I not be-I have the most marvellous colleagues as mentioned above, and I love my job. I’m really proud of what I’ve achieved though, living with chronic illness isn’t easy and I’ve managed to clock up a better track record for illness than quite a number of my general colleagues!

….It’s been a great year, but Oh Boy! I am so glad I now have 5.5 weeks to recover!….

Not those Forms Again?!

….Do you remember all the fun and games I wrote about here?….

Well, it’s getting towards that time again, and yesterday I started the ball rolling by filling in these forms and taking them to my GP to sign.

It should be fairly routine by now for her as well as for me, and I have recently redone all the tests too! But last trip, in April, when I supplied her with the form (only one then) in March, she  accidentally lost it! And a week before we were due to fly, we had to hurriedly redo it and drop her in another one. I remember my series of Tweets regarding J saying he was not going to leave the surgery until he had the afore said signed and completed form in his hand, and was willing to stage a sit in!

So yesterday he dropped them in again, and the receptionist recognised him! And there were various amusing remarks between the two of them about not losing it this time, and ‘do you think we could have these back sooner rather than later, this time!?’ To which she replied ‘Don’t worry, I’ll put them in the proper place this time, and I’ll enter it on the Dr’s spreadsheet so she knows to hurry up and sign them!’ We wait patiently!

And if you think I am being cheeky and asking my GP a favour, I will enlighten you that her signature in two places on two forms is about to cost me £40, I could even work it out how much a letter if you like, as although she is Polish her name is no more long than complex!

This trip and from now on, there will be two forms, enough to confuse my single blonde brain cell, but I am sure she’ll cope. I now how to have documentation to cover my carriage and use of a POC. Two of our flights are so short they don’t supply airline O2, so it’s a good job I now have my little E.T.

I just hope I get my completed forms back sooner rather than later, it’s always a huge weight off my mind, that and getting all the drugs ordered and packed, and I did that this week too-well, phoned my pharmacist, not sorted or packed….yet! I still have over 2 weeks of school to get through anyway, this trip is not entirely imminent!

….The summer is a busy enough time to fly, even without all these added complications to pre-arrange!….

A Big Thank You to O2!

….You can interperet this any way you like, but….

I’d like to say a mighty big ‘Thank You’ to the O2 Store in Brent Cross shopping centre.They treated me with utmost respect and care when I turned up to queue for my new iPhone 4G yesterday afternoon.

When I explained I had 2.5hrs of O2 in my concentrator, and after being told the queuing time could be 3 hrs, they took me under their wing. Not by queue jumping, how frightfully unBritish and unsporting that would have been!

But they brought me a chair and kept checking me in the queue every 10 minutes or so. Asking how my oxygen was going and bringing me cups of water. I was soon so waterlogged I began to think I would have to leave the queue to waddle off in search of a restroom! They even asked me if I’d need an ambulance if my oxygen ran out.

But I got to the front after 1hr 20 mins, and was served on a soft sofa by the Manager who understood it would be difficult to ask me to stand at a pod,  and I was presented with my prize for queuing (after presenting my credit card!).

So here is iLudwig 4G as he is affectionally and musically known, and hopefully the last grainy picture on this blog, taken with my old iPhone 3G:

And I am eternally grateful for the kind and considerate way in which all the Staff at Brent Cross treated me, yesterday.

But especially to Danesh, the queue supervisor and Gary the Manager who served me.

It was an impromptu shopping trip, with a superb finale.

But seeing as I am such a great advocate for the little Airsep Freestyle O2 concentrator,

….I do wish the company would hurry up and reply to my email letter….

….You can also read about yesterday’s purchase experience on my Project365 blog, day 29, here!….

The Cavalry

….Ever piled all your nebuliser type equipment in to one place?….

Meet this severe lunger’s cavalry. A kind of respiratory hoard, comprising a mish mash of various sizes of nebs and mouthpieces (and masks in various drawers!), and of course, the newest member of the anti-asthma cavalry of equipment, my Personal Oxygen Concentrator. (Please Mr Airsep, would you read and maybe reply to my email of last week!)

For info, I have the following:

Medix World Traveller Nebuliser

Pari Turbo Boy S Travel Nebuliser

Omron Micro Air pocket Nebuliser

Airsep Freestyle Portable Oxygen Concentrator

I am happy to give advice to anybody being prescribed a home nebuliser, as to which I feel is the best for certain aspects of treatment. My favourite neb is the Medix World Traveller, or as J affectionately calls it, my “big, blue toilet!” It is a very fast and powerful compressor neb and has proved great for the hypertonic saline, which takes about 15 mins to neb through.

I also use a P.E.P. device attached to the mouthpieces, and mentioned in my meds page above, but that’s another post. You can see this device on the mouthpiece above on the right of the P.O.C.-it looks taller than the rest.

Don’t worry, not all that lot comes on holiday with me. These days the neb of choice I take is the Pari (Yellow submarine) one. And Baby Omron goes in my purse. But of course the P.O.C. will be coming everywhere with me now. However, I can remember the times I have passed through LHR with the big blue toilet in my carry-on bag! Heavy!

….Look Out!, lungs, the medical mist, it’s a-coming to beat you!

Comments to Airsep

….So whilst I sit and wait for my blood results, I’ve knocked out a quick letter to Airsep….

As you will know, it narks me just more than slightly, that all the advertising for oxygen users and indeed, many other respiratory products, features old people. No offence to the worthy retired folk here who may be reading my blog but, hey! there are a whole bunch of severe lungers amongst us youngsters, and even though I may feel 101, I don’t look that wrinkled yet and have not got a grey hair on my head-yet!

I used the online ‘contact us’ part of the Airsep website

So here follows my little letter:

I am a young lady, aged early 40s and look much younger. I find that all the advertising from your company features older people, many being COPD patients or even actors, I suspect. I do not feel this gives a fair picture of the general oxygen user. All my clinic friends are young or younger than me and still using cylinder O2. I feel your company could open up it’s advertising to appeal to the younger respiratory patient too.

I would gladly offer myself to feature in your adverts. Perhaps it is important to step outside the norm here, I am a chronic asthmatic o2 user not an elderly COPDer. Some of my friends have PH or CF and they do not fit the norm for your advertising either.

I welcome your comments.

Many thanks,

Susannah Hunt, (London, UK)

(Chronic severe asthmatic: Oxygen user for 3 years)

….Any comments?….

Horoscopes and Harnesses!

….I don’t often read my horoscope, but….

Incredibly, when I do, it seems to make some degree of sense. Call that a calling or whatever, as a Christian, I shouldn’t exactly be believing in what is very often an amount of guesswork and claptrap,(please don’t now shout at me for that comment!) but why then did my June horoscope in The Sunday Paper say “You need to begin monitoring your health condition better” Nothing but co-incidence, IMAO, but to think, barely a week ago I hardly blew a PF let alone whacked the pulse oximeter on my finger, and now I’m a daily pro keeping records to email my Docs, and knowing exactly how I have to administer my O2 prescription. Funny, eh?

We arrived back from the South coast in time to pick up my package from J’s Mum’s-we’d had it delivered there as we were out of town.

I now have the US leads for E.T. and a smart new backpack style carrybag, which is more like a glorified harness.

See what you think:

Lots of comfort straps, a handle a carry handle and the inside is nicely padded too.

There are many reasons for my using a backpack style bag when out and about.

1. It will hang on the back of my Scootie at school easier
2. I have a bad back!
3. I already lean to one side-(mild scoliosis)
4. I have been warned by my physio not to carry an uneven amount of weight on one shoulder as I’m already crooked and it squashes one lung.
5. Carrying a weight on your back helps open up the lungs and pulls the shoulders back into alignment.
6. It encourages good posture in a lunger-especially as I already hunch and lean forward when I’m struggling to breathe.

I can only think the bag for the Airsep Freestyle unit was designed by an older person who likes to wear a heavy handbag/purse on one shoulder and thinks backpacks are for the younger generation.

And what’s with all these old people pictures of O2 users. There are plenty of us younger generation people who need to use O2.

(That sentence was not meant to offend anybody!)

….But I feel like writing to Airsep and saying, ”hey please use a couple of kids, teens, or 20 somethings in your ads” It’s just that I feel rather left out as I’m not 70+ and grey haired or a COPDer….

(What do you reckon, shall I do it?!)