Busy, busy, busy.

Posted: October 28, 2011 in Uncategorized
Tags: , , , , , , , ,

I finally got round to seeing one of my numerous consultants Thursday of last week. Followed by another straight after, another the day after, and two more visits on Wednesday this week.

Last Thursdays Rheumatology visit was well prepared for. I went armed with my notepad of the last eight months worth of crap. From the mundane through to the surreal, everything gets written down on the pad. The idea being that it builds a picture in a better way than me sitting there and forgetting everything I wanted to discuss.

Out of this appointment were two significant outcomes, one was a (more or less) straightforward referral to Cardio. This was the following appointment on the same day (so no rush then!?!) which resulted in an ECG and having a monitor for the following week.

The other outcome was after I’d mentioned I’d had a short “burst” of Prednisolone and it made me feel, to all intents and purposes, “normal”. Apparantly somebody, somewhere neglected to tell me that my bones have “significantly deteriorated” due to Osteopenia and I should have been on high dose calcium and vitamin D since shortly after my DXA scan… A YEAR AGO!!!

Prednisolone is now off the table – so much for feeling normal. And needless to say the rest of the appointment became slightly cloudy after that. I wanted to hit, kick, bite, punch, scream…

Bloods required were fairly typical… difference being I usually don’t have the full lot at once. I asked them to hurry it up after I started running out of things to talk about and when my left leg went numb (not quite sure on why my leg but, whatever).

So after few trips backwards and forwards to Rheumatology, the pharmacy, cardiology, etc. this week saw me at Dermatology. Nothing new to report on that one and, to be honest, I felt like I was wasting time.

The last two weeks has also seen my step-mum’s birthday and one of my younger sister’s. Both of which I got completely sidetracked every time I went to the phone to ring them. That and with Christmas coming and trying to juggle money around as it is…

I need the timing belt and water pump changing on the car, James needs a new bed and has done for ages, we need a new mattress and have done for ages, I need to finish of some of the tiling in the kitchen, repaint/seal the back door, we need a new sofa, I need to frame a picture (got the frame and the picture, just need to get round to putting them together). A lot of decisions need making about “stuff” that seems straightforward but everytime I try to think about it my brain tries to leave out my ear and over my shoulder.

And on top of that, my brother-in-law who was engaged to one of my friends is no more. Everybody is entitled to there opinions about who did what and laying blame and fault, but I am somehow managing to support both and keep a cool head about it while others are losing theirs.

Erica’s job will be moving offices in the new year from 13.7 miles in one direction to 10.7 in the other. Rush hour is not friendly in either direction and to the new office there is no available public transport. Which means either we need another car or I let her have mine back. The problem with the first situation is an extra £300 a month to run another car (not including the initial purchase value) which we can’t afford, and for the second option I wouldn’t be able to get to work for 6am (unless I can find someone to car share with).

So yeah, stuff I should have done but didn’t, stuff that should’ve been done by someone else and hasn’t, stuff that needs doing but can’t afford, stuff that will need deciding on but I keep chasing my tail.

One thing that has been decided on… this Christmas, we’re locking the doors, taking the phone off the hook and pretending we’re not in!

  1. Iris Carden says:

    Losing Prednisolone would be like losing a friend! What a miserable couple of weeks you’ve had. Hope it gets better from here.

  2. Lupoid says:

    Losing the prednisolone has been like losing a friend. Admittedly one of those friends that gets you in trouble, but in the last couple of years, having a few days of feeling “normal” has been something that has kept me going. Now I’m not quite sure where to go or what to do…

  3. lupusadventurer says:

    I don’t have the option of losing my prednisone, I am adrenal suppressed and it won’t kick back in no matter what we do. I am stuck for life, and bursting is my only choice under stress or flares. Without enough I face adrenal insufficiency and feel like I have a locomotive sitting on my heart. Be glad you are able to get off the steroids before it is too late. My lupus was so unstable it gave them no choice for too long before they could control it with chemo, and the adrenal glad went to sleep for good. Hang in there…

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