Blog ‘Food’: What does GF mean to me?

January 31, 2010

I’m a Gluten Free Girlie….

In my particular form of GFness, I cannot eat anything that contains the type of Gluten found in wheat, cous cous or barley, but I am ok with porridge oats and a very small amount of rye. The exact protein I am severely allergic to is Omega 5 or Gliadin. I have been semi wheat free since the age of 16 when it was suggested that giving up wheat would help improve the awful eczema that I was covered in at that age. I have gone back to wheat eating on an on/off basis a few times here and there, but in 2005 I was tested for pure wheat allergy (not intolerance, but real allergy) seeing as I had so many coeliac symptoms, weight loss, digestive problems, low electrolytes, dry skin, and of course, my severe and difficult to control asthma. The result of these tests, was that I am very allergic to wheat (my actual IgE level was one of the highest the dietician had seen) and also to ragwort and  specific wheat grasses. I was then put on a wheat free regimen. Not hard in the ‘impossible’ sense of the word, but I knew it would be awkward  as we’d always enjoyed meals at friends and eating out. This would now require some planning.

I cannot therefore walk into a shop and buy a bread roll, or a cake or a donut or eat a hamburger from one of the well known chains, or indeed, a pizza (Although, many people here will know of my extreme weakness when it comes to pizza, my forbidden food)  I will suffer for my sins, because I just love it too much. My dietician has decreed that I am allowed to get away with it once a month, but J literally sets his stopwatch for when the symptoms and my writhing in agony begin, severe stomach ache, rushing to the toilet, shivers, shakes, and hot, red flushed skin. 24 hrs or more of feeling bleurgh just because I can’t resist a Fiorentina with a soft egg on the top!

However, it just isn’t the same eating home made pizza or making it with my dough, it has to be a proper Pizza Express or Prezzo pizza or for a special occasion, a real treat at Harrods Pizzeria pizza.

I have learned to adapt recipes and use GF flour-rice flour-potato flour and soya  flour mixes. Seeing as I am such a keen cook this has not been much more of a problem then just trial and error and  a bit of ‘road testing’ of my recipes!

Here are a few I baked earlier….

Gluten Free white bread

Gluten Free corn bread

Selection of Gluten Free coconut cakes and chocolate chip cookies

So that is what I home bake. But I am also prescribed Dietary Specials bread and rolls (you can click their logo in my sidebar and check out their website) and my wonderful and generous Parents keep me stocked up with all sorts of GF goodies from their local Tesco hypermarket. It is a standing Family joke in that I email or text them an order and they drive over and stock my cupboards with their own ‘.com’ delivery service!

My favourite GF products of the moment are cheese crackers, blueberry cereal bars and ginger biscuits, all from Tesco! And thanks to Mum and Dad I have a good cupboard full at all times!

So next time you see me Tweet that we’re going out for a pizza, you know what that means for me…..

….I’m eating my forbidden food (but the agony is worth it!)


A Swim and a Sauna

January 30, 2010

Well, I’ve reached a state of equilibrium.

Today my Pred dose and my kms swum are saying the same number-15mg and 15 kms! This may not happen again for some time, seeing as I am not planning on having to increase to 30 or 40mg if my lungs behave and I can sure help it in the near future, and it will take me at least a few weeks to reach those totals in km’s. I’m pretty chuffed though as I haven’t been feeling too great recently and I am today extremely fatigued after my 3 days at school.

This is the pool I swim in at the club we belong to.

The water is a saline/chlorine mix and does not set my lungs off with nasty fumes. It is also a lovely temperature, never too hot or cold. I chug up and down, a huffin’ and a puffin’ for 40 laps, as it is a 25m pool. This takes me upwards of 30 mins depending on how I am breathing. And after this little lung work-out, I reward myself with a Sauna.

The jacuzzi is at the back of the pool (you can just see the area in the photo). There is a mixed steam room to the left. The saunas however, are single-sex ones in the Mens and Ladies locker rooms.

I cannot tolerate the humidity of steam rooms. To vacation in a place like Florida would mean an instant lung death for me as I am a preferred warm dry air asthmatic. I really need the dry sauna and that wonderful healing heat to dry out the wetness I have in my lungs. It does not cause me to suffer bronchospasm or constriction, like the steam room when I have tried it. I sit on the bottom shelf and close my eyes and imagine I am in the heat of the Palm Springs desert, on vacation. This being said, I have never managed to even stay 10 whole minutes in the sauna, usually managing only around 5!

But I emerge all warm and relaxed with pink cheeks and smiling, having gone in, flaked out and usually still out of breath. I have a routine that seems to work for me in that I breathe in through my nose and out through my mouth in the heat. Weirdly though, my skin seems to remain as dry as a bone, I never sweat or perspire one bit. I don’t seem to have spare water in my body even though I drink like a fish, quite telling as I do seem to suffer from a wet lung asthma not a dry hacking type. I will also have  pre-medicated before my sauna, with about 5 puffs of ventolin straight after my swim, and then I do a proper neb straight after my sauna when I am changing. This is because I tend to get a bit of an instant flare when I stop swimming, and then a more majory flare about 20 mins after swimming. The effort of changing is also pretty routine at setting me off too!

So that’s my daily exercise bread. As long as I am able to, and we continue to be members of this club, this is my preferred PT routine. I have been swimming like this since Jan 1st 2008 and I know it has helped my lung and leg strength, and my confidence.

But seeing as my Hospital Docs do not allow me to put my face in the water, I only swim ‘ladies style’ breast stoke.

So I never get my hair wet!

Making a Difference

January 29, 2010

I taught two sessions today with this as the theme.

The first was a rehearsal with a Yr12 student, working on the phrasings and dynamics in her Mozart piece. The second was the weekly Pastoral lesson with my 7th Grade form class. Of course they swung the ball into their court, and we discussed the issues of school uniform and litter. Hugely important in the lives of 11 year olds. But not, I would imagine, as important as the performance markings in that earlier Mozart session with my sixth former.

Today though, what has made a difference to me has been the huge psychological impact of my getting by, pretty well, on just 3 tiny little red pills.

Yes, after two really erratic breathing nights and a rather larger degree of Air Trapping than I am used to, I decided I’d get on and bite the bullet, or rather swallow 15mg, thus continuing with my taper at a time when many would have had me increasing my dose back up to 40 mg. I see this as a huge positive actually, something truly making an emotional difference.

So what is it with these pills?

They’re only tiny red dots, chalk, flour, a bit of colouring: and the prednisolone! How do they make such a difference?

I have never been of the frame of mind that they change anything but the level of inflammation in my lungs, but apparently I am a monster on them. Apparently I grow horns or antlers. Apparently I snort fire and scrape my right front ‘hoof’ on the floor…(Toréador, en garde!) I suppose on a larger dose, maybe, but as I taper the milligrams, I also return to normalcy, those antlers shrink, and I regain a less befuzzled head, and become little, sweet me again.

We all battle with this drug, some more than others. I am very lucky that I do manage to get off of it for whatever periods of time between big flares and the inevitable 40mg courses of it. I had been surviving for a period of time on a maintenance dose of 10mg but the melting snow got to my lungs, two weeks ago and the breath of life needed the scaffolding, encore.

Incredibly I must be on a high. It is Friday, my working ‘week’ is done, and went so very well, and, I have again, incredibly managed a swim, breathing pretty securely and rhythmically. On just 15mg?! It is bizarre.

I plan to mind over matter the rest of this taper. I have 4 days now to rest and recoup some degree of lung strength. I should also be using my oxygen more in the evenings-I’ve been very SOB recently even before these last two evenings of out of control hyperinflation. We’ll see…..I can but plan. Protocol can take a hike, if I feel I can cope, I will do anything to make a difference in this lung journey of mine.

Throw away those text books!

Bellows at Bursting Point

January 28, 2010

I had such an uncomfortable night…

I was honestly feeling like an over winded set of Organ bellows. With about a Coke can of expiration going on. Ridiculously, in the past week, several of us had been discussing the phenomenon of Air Trapping over on Steve’s SARP (Severe Asthma Research Program) Group on Facebook. Plus I had also received confirmation that my Sprirometry from 3 weeks ago showed moderate Air Trapping. And then my silly bellows joined in their own Air Trapping party. Leaving me at virtual bursting point, in a semi state of panic, barely able to move because I simply couldn’t breathe and almost, very nearly, almost giving in to J’s wanting to call me an ambulance. I did put out a few Tweets to Kerri and that seemed to make me stay put. Such is the power of concern from afar! And too, the power of the human mind when the body is simply not playing the same piece is quite incredible. I also stubbornly did not want to be banged up on BiPap, plus J (and I) was (were) enjoying watching the Golden Globes off the Sky+ system!

I found this picture online earlier. To me it is so wonderfully apt, and descriptive too. There seems to be an Orchestra inside my lungs at the best of times, but last night, the bellows had been over-pumped, and were unrhythmically wheezing out a completely different tune.

I also loved this description of the mechanics of The Wind Supply of the Organ:In order for the sound not to waver, the air must be at constant pressure in the bellows under the chests” Ha!

How completely and utterly apt.

I’m including this beautiful clip of a Vox Humana. My favourite organ stop. So expressive, and so named because of it’s resemblance to the human voice.

Vox Humana Tremulant

It just remains for me to say how grateful I am to all those who sent me kind messages, both when I said I was poorly last night and today when I charted I’d recovered enough to have a really great day at school. The Pred is still at 20mg. It took a huge amount of reserve not to just give in and whack it up again, although I don’t really know if that would have been beneficial?

I am feeling much better today, tired after school, and with physically sore, stretched muscles.

Sadly I haven’t been up to swimming today.

PostScript: Thursday, am, 25th February

This feeling of airtrapping has continued to happen on practically every Wednesday I have been at school. The only week I have not felt so hyper-inflated by Wednesday evening was last week, half term, when I was not at school.

Yesterday I had a nasty afternoon of really feeling twitchy in my classroom and not being able to do anything major in the neb line to help it as I had back to back lessons. Followed by a staff meeting, moving from a very hot class room into a cool hall whereby I had a full blown coughing paroxysm followed by an asthma attack, which after about 6 puffs I though I’d better leave the room. (Best not to let people see me OD-ing!)

So meeting over, I ‘rushed’ (sorry had to write that!) home, via another physio appointment… Interesting having acupuncture in my neck whilst sitting up as I couldn’t have layed down with my crappy full of air lungs. So my neck may be improving but the hyper-inflating isn’t.

Went to bed to sleep (!) pretty upright at 9.30pm. At 3am I was awake and having a full blown nasty asthma attack.

I feel less barrel like now, but still over full, over stretched and uncomfortable.

…What is it about Wednedays that does this to me?

Tabla, Tala and a Taper!

January 27, 2010

Today I’ve reached 20mg…..

This is my most critical stage in a Pred taper. I always hit that iffy lung time when I get down to 20mg and then try to force the drop to 15mg. I am also weaning more quickly than my lung Docs suggested, just because I’m me, blonde, stubborn and impetuous. And the quicker off the stuff, the less painful the wean providing my asthma plays the same game.

So where do the Tabla come in?Well today I was teaching about Indian music with my 8th graders. A taxing enough topic when I’m running on full puff, but to try and be heard above the noise of their tabla bashing, with a chronic cough and little steam, was really quite a challenge!

The Tala rhythms are so complex, a bit like trying to wean off the Pred really. They are learned to a system of chanted syllables in a cyclic fashion, again, a bit like my on off, on off, Pred dosing! Who would have thought my lung health would turn out to be so like my teaching topics.

I came across a doctor’s report yesterday, which said some thing like ‘by the time I had tapered and weaned from one course of pred, I was about ready to go straight back on another’. For the majority of the previous year I had not managed to stay off of it entirely for longer than a 3 week cycle. There-that word again, cycle!

So my lung journey and need for Pred is really exactly like learning rhythmic patterns in Indian Music. Cyclic.

Biorhythms? I think these Indian Gurus may have hit on something (excuse the pun).

The Anti-Cramp Arsenal

January 26, 2010

Does this look appetising?

I would think that any moderate to severe lunger, and indeed, any athlete is familiar with the contents of the above tray.

These are the most commonly sourced, readily available in my house, potassium rich food items. My arsenal in the attack against cramp. You don’t need to be an athlete to suffer from muscle cramps. And indeed in my case, my extremely painful crampiness is not caused by any form of athleticism, least of all my snail paced swimming. However, it remains all too common that the potassium in my body is being stripped by the constant ingesting of high doses of oral Prednisolone and inhalations of large  amounts of bronchodilators.

So after yesterday’s appointment with the vampires I thought I would share my cramp info, and mention that other than just taking large, prescribed quantities of Sando and Slow-k I do try to eat potassium rich food, rehydration drinks, salty potato chips, green leafy vegetables, bananas, tonic water and …….prunes!

I always find my cramps are at their worst in the evenings when I am tired, and of course, on a day when my lungs have been grumbly enough to warrant my chucking even more breathing treatments than usual at them. My groin, inner thigh muscles, calves and fingers seem to lock up and suffer the most. J tries to get me to stand up and shake/squeeze the blood back into my muscles. Invariably I fall in a heap on the floor, half giggling, half screaming in agony. It is a horrid, horrid silly side effect that I’m afraid is par for the course because I need to take a huge daily dose of these medications.

And of course, wonderfully, since I have been taking the Slow-K, I have not had one episode of cramp!

I await my blood test results from yesterday with utmost eagerness, I am half hoping I’ll get to stay on this med for a while longer as it is sure less distressing that suffering in such agony when I’ve been doing nothing more active than sitting on the sofa!

And we all know what prunes do, don’t we!

Another (wet) Medical Monday!

January 25, 2010

Why does it always rain on a Monday?

Not that I really have much to moan about as I do not have to be at my wet cold soggy school until Wednesday and hopefully by then it will be dry!

So the purpose of this entry is, I have to go get my bloods done this morning. Wonderful. A soggy wet Monday and a run in with the vampires! I’ve been counting down until today actually as I’ve now been on my serum potassium supplement (slow-k 600mg) for 2 weeks. I can feel how much better I am in myself, not so deathly fatigued like I was over Christmas, and something of a decent appetite too which is beneficial in all respects. But we need to check this drug is doing what it should  and that I am approaching something of the normal serum K range. I don’t want to stay on these for ever. I have my own personal pharmacy at home here and am on 1st name terms with my Pharmacist as it is. Surely I could just consume truck loads of bananas, green leafy vegetables and quinoa! But until I have a level over 4 (mine is currently 2.8) on the slow-k I will remain!

Of course, as all of us know, cold day, buried veins, although my veins are still pretty prominent and holding their own, so we’ll see…….wish me well, I’ll probably wait weeks for the result anyways!

Needle anyone!

…..Edited on Tuesday……

I simply had to add this sign……

The woman sitting next to me in the Waiting Room was yacking incredibly loudly in a foreign language on her phone….maybe she simply didn’t understand the English? So there was I, minding my own business, tweeting silently to Kerri & co, and like the quieter everybody else was, the louder she yacked, for the whole 30 mins I had to wait.

But I did cough loudly though!