Mon 30 Jan 2012
Thinking today how much I miss my mum. The house feels really empty. I find myself wanting to call her as if she was still around. I got so used to having her with us, it will take me a while to adjust.
I’m holding onto the plan we have for me to fly to CT in April - godswilling. My brother will be there from Australia and my cousin is getting married- it will be fantastic to see them and all my family again.
Physically I’m steadily improving thank heavens. What exactly is helping I cannot say as I still don’t know what the cause is - but I was very frightened there for a while. Feeling throttled is not a good space to be in.
Aside from the antibiotics I immediately increased my iron intake plus added a B complex and several other vitamin/minerals plus nutrition measures. Low iron/zinc or thiamine can cause difficulty swallowing.
Big effort. I never realised the GP would prescribe me 8 - yes 8 antibiotics a day!!!! This after I showed her my stonking big bottle of vits I take daily! Anyway - I realised too late so I just have to go with it.
I don’t know if I should have just waited for the labs but tbh I felt if my dysphagia (difficulty swallowing) was due to a deficiency I was not going to hang about twiddling my thumbs until I had a mega emergency on my head. Also - these decisions seem to be up to me. As kind as the GP was - she seemed disinterested in my DS. Feels to me like the GP’s I have seen since my DS don’t really care much to discuss how it factors into every moment of my life and subsequently cannot understand it’s potential impact on any issues I might be having.
Mostly I take a base of pills daily that is habitual for me and I don’t mind doing it. I always say for me it is a small price to pay for my DS. However at times like this the posts move. It can be difficult factoring in the extra’s never even mind an extra 8 pills that need an hour on an empty stomach. While I am having a wee pity party, I’ll add that this morning I had terrible constipation - probably due to the increase in iron. To cope I have had to keep notes of all my intakes the past few days.
I just keep telling myself it will pass and the more I stay on top of things the quicker it will pass!
A long time ago I remember a member of my surgeons team telling me there would be times I had to take more than a fistful of meds. To be prepared for this. I shook my head as if I totally got what he was saying. HA! How little did I know.
So - I will pass on that wee gem of wisdom to other pre-DSers…it is true. It may not be all the time, most of the time one gets on with it with no ado. However, there are going to be these times when one is just a giant pill factory. Maybe you can be smarter than me and ask your GP to prescribe an antibiotic that does not require taking 8!
Here is today’s little list plus my attempt at boosting my nutrition:
(I had to rewrite taking 2 V4L every few hours - was struggling with that so moved to a different plan. )
8am - 2 antibiotics
9am - 2 yogurts, mashed banana, 3 Vita4Life, 1 iron, 1Vit C, 1 Biomend (a food supplement with berries it might be dubious but it can’t hurt…
)
11am - Huge glass of fortified milk, 1 Multi-B vit, 1 Copper (Just realised I need to get a copper lab sometime soon too!)
12 am- 2 Antibiotics
1pm -chicken salad with almonds & dressing, yogurt (yogurt is my friend *thumbs up!*), 3 Vita4life
2.30pm - Fortified Milk, CalmagD, Vit K2 x2
4pm -2 antibiotics
6pm - half an apple, 1 solvazinc
7.30pm - 1 large pork chop with dukkah topping, stir fried corn, beans, carrots, spinach, 1 large tablespoon of marshmallow fluff
which kind of boogered up my healthy meal ideal, but I’m going to be kind to myself right now! 3Vita4life.
10.30pm - 2 antibiotics
1.am - another yogurt. Prune. Desperately hoping in the am my bowels will move freely. I have to chuckle - the thoughts we have eh! I have just taken a lansoprazole and will finish off with an ibuprofen and after toothbrushing will use 1 acidophilus for the mouth/throat area.
TOTAL = 29 various pills and capsules. Happy days!
