Hives, Hops & Hounds

Sooo, my butt is doing something different this week just in case I was getting bored.  I Photo of blisterswoke up to a blistery blob about the size of a 10p, which both stings and itches and looks a bit like nettle rash.  I’m now convinced more than ever that the blisters I’ve been getting on my torso definitely aren’t bug bites but are some kind of mast cell reaction.   I’ve tried steroid cream on it (not helping), anti-histamine cream on it (also not helping) and tea tree cream on it (not helping either!).  It just gets bigger and redder by the day.  Odd!  My hives are also still in full outbreak.  No sooner does one patch start to fade another one takes its place.  Apart from being itchy they don’t bother me though, so it’s not like I worry about them.  I’m just thankful all these things are on my backside and not somewhere visible like my face.

I now have a date to go back down to London for my MCAD test results: 19th November.  I’m both excited I will finally get diagnosed and terrified they’ll find nothing.  I couldn’t have been more symptomatic, with an outbreak of hives and sneezing my head off, so if the tests are negative I don’t know where I’ll go from there.  However, I was really concerned about the way the tests were carried out.  The man who did them barely spoke English, and I was under the impression that the chilled blood and urine in particular were supposed to be put straight in the fridge as histamine can start to de-grade after only 15 seconds at room temperature.  Not only was this not done, the samples that were supposed to be immediately frozen were still in a bag in his hand after I’d paid the bill and was leaving the building.  If the results are negative I’ll be querying this in a big way, considering the tests and train fare cost me nearly £500!

Photo of ankle supportI really should stop boasting when things are going well, because the Gods are always listening!   My ‘good’ EDS patch seems to be on the wane, as my left ankle is currently strapped up due to ligament pain.  I’ve no idea what I’ve done to cause the pain, could just be the change in weather, but I’m now doing my Hop-a-long-Cassidy routine and walking like a constipated duck.  My little Schnauzer, Bertie, is also limping and has had intermittent lameness since I first adopted him 2½ years ago.  The vet is unsure of the cause, so he’s currently being monitored and might have to go in for some x-rays.  Did you know that dogs can have EDS?  No, me neither!  Maybe we’re coming out in sympathy with each other 😉

As we’re nearly into November I’m reluctantly starting to think about Christmas (wash your mouth out with soapy water woman! 😉 ).  There’s nothing worse than sitting watching the rest of your family tucking into the Celebrations and mince pies, while you’re stuck with yet another piece of boring Shortbread.  So I decided to investigate making some fudge (see the recipe page and scroll down) to indulge in over the festive period.  I have to say it’s absolutely delicious and better than anything I’ve bought in a shop.  Bertie thought so too, as I discovered when he nicked the tub off the table while my back was turned and scoffed the lot.  He then spent 2 hours being sick, groaning, and going round in circles with his eyes on stalks from the sugar rush.  Serves him right!

Photo of fudge


2 thoughts on “Hives, Hops & Hounds

  1. Sherry

    Morning :). Well, it is morning here in Ontario, Canada anyhow! Of all of the important details of your post that I wish to respond to in this moment is the heavy, heavy burden of our shifting between building elation/hope and persistent sorrow/despair pertaining to our anticipation of the outcome of our tests. Although I have symptoms diagnosed here and there – a primary diagnosis (and all of the…stability, validation, support, understanding, and enhanced management that comes with it) remains elusive. Its like walking around with a broken arm that no one can see…well, sort of…in terms of how brutally obvious it is to the sufferer – yet unseen and unacknowledged scientifically by traditional western medicine. This has been one of my own personal battles for years. I am here yet again with an upcoming appointment to begin the discussion of Mast Cell or Histamine disease (in November)…and I am once more fighting that mental battle. The one that gives me hope and steals it away over and over again. This is one of my most difficult issues in my personal story. I don’t have any truly gratifying answers as to how to manage this stress other than to breathe and bring oneself back into the moment one is in…and out of the bondage of the mind. I wish you strength and courage…and love. We who understand this…have your back.


    1. bertieandme Post author

      Hi Sherry

      Thanks for your kind words, they’re appreciated. I’ve had nearly 20 years of illness now, and have lost count of the emotional ups and downs while I wait to hear my fate in the hands of doctors and lab technicians. I don’t think it ever gets any easier. The hardest part is always if tests come back negative (which 95% of mine always have) as that leaves you still sick and with no answers or help. I do wish testing for MCAD was as good in the UK as it is in the USA – we have none of the tests available in the States, and MCAD does seem to be easier to diagnose if you have access to heparin, 24 hr histamine and PD2 tests. I can only keep my fingers crossed the tests we do have show something is wrong!

      Take care and good luck for your appointment in November.
      Jak x



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