Patient patient,my patience is dwindling.

[Stitcher48]

Hi everyone,haven't been on site for what seems an age,when I'm not sleeping(which isn't very often) I've been mother of the bride dress hunting on the Internet,much too tired to actually go shopping as iron meds were a total failure for me and I wasn't able to tolerate them,I persevered but lost so much weight from upset tummy and the last few days I was so dehydrated I stopped urinating....it was such a disappointment as for two short days I felt like Wonder Woman ,I felt so alive and alert that it felt like a miracle.

Now I'm waiting again for a referral to aconsultant who will prescribe iron infusions..it feels like I'm just spending what little life I have waiting to get the help I need. Still waiting for my liquid oxygen to be sorted out, I now have to keep a diary of how often I use it so they can decide whether or not I need more but there is such a great big gaping hole in that arrangement as I can't go out as often as I want to because I don't have enough oxygen!!! I reall am losing patience and my sense of humour, I don't know if it's because the thirty years since I beach E I'll with this awful autoimmune disease that's attacked every organ in my body' or I've just become a grumpy old woman,though I'm not fifty until next year.

I've been really stressing about my daughters wedding and having the stamina and getting all my medical equipment to the hotel ,oh,I'm just being typical mum of bride just wanting her day to be perfect and for me to get through it with no drama,no passing out on the dance floor lol ,which I've been doing since my early twenties,but I have oxygen now ,well I hope I will have oxygen....well that's the latest ,I'm still on antibiotics ,now on 1000 mg of Amoxycillin three times daily ,the co-amoxiclav just has no effect anymore,which is worrying me as I'm allergic to cyproxin ,(tendonitis).

Bedtime now,overnight oximetry test tonight,yeah!!

Night, night everyone,keep well,keep breathing x.

[Stitcher48]

Sorry about spelling mistakes,double vision is terrible and I need new glasses,oh the joys of middle age.....😃

[Stitcher48]

And I'm sleeping all the time,managed seven hours on the loo one night,is that Guinness world record! Lol😁😂💤💤💤

[sassy59]

Sorry to hear things are not good for you. I just want to send good wishes in the hope that doctors and consultants will do more for you.

Thinking of you xxxx

[Ergendl]

Hugs for you, Stitcher48 . More liver, red meat and spinach in the diet, perhaps?

[carotopgal]

I hope all goes well with you...your health and the wedding. Having gone through 3 weddings for my kids in the stretch of 1year, I was a wreck! Hang in there. The infusions aren't bad at all. My iron is ok, but my ferritin goes to nothing so I have to have infusions every 3 years or so. Mine only takes about 30 minutes and I'm done. I hope you can get everything sorted out! Hugs!