Todays Rant, tomorrows will be different

[Kev]

just a rant, no medical breakthroughs, no flares to report, so if you wanna pass on it, go right ahead...

anyway, my diet is pretty restrictive, but i've managed. Recently, I've noticed that a lot of the 'staples' in my diet are dissappearing. I spent a lot of time & effort finding a margarine that is lactose free, low fat, and tastes pretty good. I found one, it was a generic brand, so it had all of the above benefits plus it didn't cost an arm n a leg.
Guess what? They stopped making it. guess there wasn't enuff people in just my sort of predicament to buy it. and I found a digestive cookie that was really nice, it became more of a 'treat' than a staple.. a baby cookie designed to introduce fibre in a mild eniff format that babies (or an ol fart with IBD) could tolerate & aclimate to. Its been disappearing off the store shelves too... thought it was popular. Guess what? Another of my 'staples' have been dropped from production.. Then I had a generic low fat, lactose free milk substitute... tasty, easy to digest, and 1/2 the price of other brand names... and lower in fat too.. And they stopped making it too.. What is this? A freakin conspiracy??? Even finding bread that isn't laced with extra fibre is taking on the status of 'Mission Impossible'. I spent the afternoon yesterday trying to stock up on several of the aforementioned items. It was pretty disheartening. I found one package (after trips to numerous stores) of my digestive cookies... apparently old stock, as they are staler than last months newspaper... I struck out on the milk substitute, and as for margarine, I settled on a small container (all they had) of a costly brand name.. it's 3 times the price of my no name, it makes toast soggy, and it tastes like crap. Boy, am I pissed off!!! I did find a loaf of bread, again the generic wasn't to be had, the name brand is 2 times the cost, but at least it tastes OK (altho the generic tasted better & lasted a little longer- why? I dunno) Just know that yesterday, even before my shopping trip, I was feeling crabby, cranky, totally without energy, and my grocery list is a case of more items couldn't be had/found, or those I did cost a lot more than I'd budgeted for... and in the end, don't taste as nice as those I could get just a few weeks ago. Talk about adding insult to injury. Oh, well, tomorrows another day.

 

[D Bergy]

Out of respect for you I will not even mention my diet lately. I will just say I am surprised I did not give myself some big flare problems.

My daughter, who has Celiac disease has the same problem you do. She ate one thing that apparently had Gluton in it at my sons wedding and puked shortly after.
We were so careful to make sure she had food available that was safe, but either their was cross contamination in the kitchen or some ingredient had been contaminated. We were rather upset, but that is the way life is if you have Celiac.

The good news is she has been doing really well overall since going on the impossible diet.

I would buy a bread machine and make your own bread. My wife bought one and you can make bread any way you like it. I had forgotten how good hot, fresh bread is.

If you have a Celiacs group in your area give them a call. They know where all the hard to get food items are. Some have bulk buying clubs so you do not pay so much for hard to get items.

I hope tomorrow is a better day for you.

Dan Bergman

 

[Sojourn]

This brings back bad memories of before I was on Prednisone last Summer and flaring. Liquid drinks, crackers, one meal a day, etc. it was for me. Currently I'm indulging while on Pred though still low-residue. Tonight I had a cheeseburger, doritos, and two beers.

I am dreading the day I will have to begin tapering off the Pred. It will probably be within a month or two. Don't know if I will be able to keep up the pace on my job. I've been doing a 6 days on, 3 days off, but the 6 days on are almost 16 hour days. I don't know if I'll be able to handle it without the Pred. I've had family visiting from out of the country and just moved into a new apartment also.

 

[Kev]

Well, I'm now down to 5 mg of pred, yet feeling much better than I was last month on 15 - 20 mg. Go figure. either I'd something else going on, or its pred withdrawal.
My energy levels aren't what they were on full strength pred, but I worked 3 15+ hr days last week, and I seemed able to cope. Not sure of my long term capabilities...
If I can keep working 2 - 3 days a week, I can keep the wolf away from the door. It doesn't factor in the possible cost of methotrexate or infusion therapies.. or my IBD getting worse. I'll cross those bridges when I have to. As for tomorrows rant today, I saw my GI yesterday. She hasn't made a decision yet on LDN treatment. I think she's (as to be expected) afraid to go that far out on a limb for a patient OR she has made a 'negative' decision, but is hoping that I'll taper off of the pred and maintain my present status THUS avoiding a conflict and a potential disagreement.
I mean, as a reasonable person, I can see her side of it. An as yet "unapproved" use of a drug outside it's fully tested, stated purposes exposes me to a health risk and her to potential lawsuit AND potential professional disciplinary action by peers.
For what? One patient out of a thousand. She'd be putting a lot at stake to agree
However, having IBD firsthand can make being reasonable just go out the window

On top of that, driving back yesterday, thru rush hour traffic no less, my car went on the fritz. Thought I'd lost the belt off of my water pump, or was low on coolant or oil. no such luck. today it's at the garage, but its just before our long weekend (THanksgiving Day in Canada), and they don't expect to get around to it till Tuesday. I am (eeer, I guess 'was') on call for work this weekend. If it comes in, I have no choice but to decline, AND I'm supposed to start a new case on Tuesday.
Bad enuff to have an unknown repair bill hanging over me, but the thought of losin that work too? hmm, wonder if my rant title set me up for this latest little setback?