Weekly roundup

I did a big Ooops this week.  I’ve been working on a new section, called Cooking Tips, to add to the Recipe page.  I have no idea how it happened but somehow this was published as a blog post, when it wasn’t meant to be any such thing.  So just ignore it, cos it wasn’t finished.  To be fair I’m amazed a cock-up like this hasn’t happened sooner being as though I spend my whole life in a mental twilight zone 😉 .

My attempt at having a holiday has only been partially successful.   I’ve found I’m quite bored just blobbing about doing not much of anything and more aware of all my symptoms as I have no distractions.  However, I did have a day out yesterday at an international ceramics/pottery fair with a friend.  We took a little picnic which we ate sat on the grass under a shady tree, before having a wander round all the stalls.  I couldn’t afford to buy anything of course, and I’m not into buying ‘stuff’ for the sake of it anyway, but it was something different to do and I enjoyed the gossip with my mate.  My legs are sodding killing me today but :-/

It’s the school summer holidays for the next six weeks here in the UK and my dog walker has two children so she’s only walking Bertie 3 days a week instead of the usual 5.  You wouldn’t think taking the dog out for 2 extra days a week would affect me, but as I was already shattered I’m really feeling the extra activity.

Speaking of the Bertster he inadvertently caused me injury again this week.  I looked over my shoulder in the driveway to see where he was and felt something ‘go’ in my neck which immediately went into a huge spasm.  I imagined I’ve strained it and for the last 3 days haven’t been able to turn my head to the left.  Good job when I’m driving up to roundabouts I only have to look to my right, but I’m struggling with junctions 😉

My sprained finger, and the lump which has developed which I think is probably bursitis, aren’t getting any better and after 3 months I finally decided I should probably see my doctor just to see if all is OK.  I rang for an appointment on Friday.
“Is it an emergency?” asks the receptionist.
“No” I reply.
“In that case the earliest general appointment I can book for you is 26th August”.
“OK, I’ll just leave it then.  Thanks.” what the hell I’m thanking her for I don’t know!
In another month my finger will either be better or have dropped off.  This is why I rarely visit my GP.  You have to decide a month in advance that you’re going to be ill or injured, and then all she offers is drugs which I can never take, so really what’s the point?!

I’m still having awful 24/7 nausea, griping stomach pains, muscle spasms and loose stools which I’ve never had before in my life.  My nervous system is also in absolute hyper-drive, my all-over constant pins & needles are driving me insane, and I feel like my entire body is plugged into an electric socket.   I’m so fed up of yet something else playing up I can’t even discuss it 😦

I was hoping to do a poll on the effects of Sodium Chromoglycate for those who have tried it but something is blocking the pop-up window needed to do this.  I’ve tried disabling my antivirus.  I’ve tried disabling my ad blocker.  I’ve checked that pop-ups aren’t blocked in my Firefox browser.  I’ve tried using Internet Explorer instead.  And it still won’t bloody work.  I hate technology and seriously don’t know if I can be arsed contacting the help forum for advice.

Having read this back I sound like a right grumpy old cow.  That’s probably because I am a right grumpy old cow and I really should just come to terms with the fact 😉

 

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6 thoughts on “Weekly roundup

  1. Ashley

    Hello. I came across your blog by accident and was fascinated with your story. I wanted to ask if you have been tested for Hepatitis C? Literally all of your symptoms are a part of the virus and with the new medications approved this year with a 90+% clearing rate it may be worth getting tested.

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  2. Kathy

    Are you a member of the Mastocytosis group on Facebook? They have been a tremendous help for me. I am still a bit fearful of travel, since I am less able to control my environment…but they gave me the courage to use my epi-pen when I needed it. I was surprised it didn’t hurt! I don’t have Mastocytosis, but rather something that causes me to have random attacks of anaphylaxis, usually in the middle of the night. Right now, it is being labeled as MCAD, and I eat a low histamine diet, in addition to avoiding foods that are known to cause me problems. I also have Celiac. I call my diet the “flavor-free” diet. Oh, well. Hang in there!

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    1. bertieandme Post author

      Hi Kathy

      Sorry to hear of your anaphylaxis – that must be really scary 😦

      I really struggled with my low histamine diet at first, but it’s been a year now and I’m used to it. I can’t bear bland food or dry food, so do try to make things as flavour-some as possible though it’s not easy!

      I was a member of the Mastocytosis UK last year, but when the lady who runs it saw I’d started a support group via my blog for people with both mast cell disease and Ehlers-Danlos she really wasn’t very nice to me so I left 😦 I couldn’t understand her issue with my little group at all, as the focus is on EDS and the fact we have MCAD as a result of having EDS, and I made no secret of my blog (my blog url address was under my signature on every post I made to the group) but such is life!

      I don’t know who runs the facebook group but don’t want to run into the same people that were in UK Mastocytosis as I felt I wasn’t treated very nicely by some of them.

      I’m glad they’ve helped you though 🙂

      Jak x

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      1. Kathy

        Dang it. I am so sorry to hear about the petty attitudes of some people. My daughter has a very rare birth defect called “Giant Congenital Nevus”. We helped start a support group 17 years ago, and have watched it grow. We have also met many other people from around the world who are grappling with the same confounding condition, and many of those folks have started support groups in their own countries. What we have found is that even though we try to steer new members to organizations in their own country, they often feel more comfortable, more welcome, in ours. I am not certain why. Like any “family” (and we ARE one, in a strange way), we have our share of, uhm, interesting individuals. And flame wars do occur. I try to shut ’em down as fast as I can, but am not always quick enough to stop some from stomping off in a huff. For the most part, though, the people are gracious, welcoming, and quick to share their own experiences, and yes, blogs. Blogs are incredibly helpful, and I think it rather short-sighted of the woman running the UK group to think otherwise. At any rate, I understand your reluctance to join another group. It IS possible some of the UK members are also members there – but I think you might find your experience with the US group perhaps more positive. You might ask the admin if they allow links to blogs? At nevus.org, we most certainly do. In fact, we encourage it.

        One more mast cell gripe: I hate the fact I am gaining weight. I assume it is due to the steroids. Grrrr.

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