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January 2007 Archives

Week One

| 7 Comments

First, the good news. I managed to get last week’s CD4 results, instead of having to wait until late February. I worried they’d followed the same downward trajectory – they didn’t. My percent stayed the same at 26%, but my absolute was at 567, up from 447. I was worried they’d be in the lower 300’s this time (I’d lost app. 100 per quarter last year) and all this palaver over being evicted would push them even lower. As you may imagine, it was a relief to find out I still have plenty to spare. Those numbers were a very bright and welcome spark in an otherwise murky week.


Thursday morning I arranged for additional letters from my consultant in Liverpool and my GP on the Rock, so hopefully I’ll not end up in another damp house and/or too far from the shops. (I don’t have a car) Next, I took advice from a duty social worker – the closest thing to a case worker available to me. Manx law is a bit different from English law and while I do have some rights in the situation, I don’t have many, so I have to tread carefully or I could end up on the streets.


Thursday afternoon brought a meeting at the Town Hall with the town clerk (like a mayor, but not quite), a commissioner and the head of the works department. I’ve never met this particular commissioner before and I thought I was in for a bull-dozing, but she turned out to be quite fair and open minded. The head of the works department really fought my corner, which surprised me no end. I take back everything I ever said about him when I was an apprentice under him years ago. (hehehe….. )


The outcome of the meeting wasn’t much – I still have no idea where I’m going, aside from the Bed and Breakfast I checked into a few hours ago. On the up-side, I know I have at least one person looking out for my best interests and I think possibly two, counting the commissioner. They were both against the town clerk’s idea of moving me into a house I couldn’t actually have, temporarily and with little more than a mattress, toothbrush and kettle. They’re both insisting I stay in the B&B until suitable housing is found.


Today I spent chasing down the correspondence and cheque I should have received – but didn’t – from the DHSS. Still none the wiser on that score but hopefully all will be revealed – and paid – on Monday when my adjudication officer is back from personal leave. I also spent time chasing down the letter from my GP that wasn’t ready – but that’s a whole story in itself, involving small-town medical practices and the locals who staff their offices. ‘nuff said.


This evening, I checked into the B&B. It’s owned by a lovely couple and the room is beautiful. I admit I was more worried about the people than the accommodation – I was afraid they’d be taciturn and fussy and I’d dread having to go there every night. After chatting with the woman, I know it’s going to be ok, even if I end up there for some time. To be honest, I think she was as relieved as I was when we met. I’m not sure what the blow-hard in the town hall said to her, but I had the impression she was expecting me to turn up on the doorstep semi-inebriated, with two garbage bags of possessions and a bottle of Jack Daniels under my arm.


After checking in, I came back down to my flat to watch telly, catch up with some emails and write this update. I spent some time reading Jonathan’s and Regan’s blogs and got a healthy dose of perspective. The knot in my stomach is finally starting to unwind. This is starting to feel do-able, something that seemed near to impossible a week ago when this whole thing started. Some of the thoughts and feelings I’ve had this past week reminded me of being newly diagnosed - the word ‘vulnerable’ pops into my head. I don't like that it’s gotten to me so much – there was a time when I’d have taken it all in my stride. Knowing there are people on my side, both here on the Rock as well as in cyberspace, has made a huge difference though and I think I would have been even more of a basket case without the support I’ve had. Thank you - all of you.

Frustration

| 3 Comments

It’s official – I’m a nervous wreck. Come Friday night, I’ll be sleeping in a Bed & Breakfast and I still don’t know where I’ll be after the B&B. The confusion and resulting stress is beginning to send me ‘round the twist.


Monday morning I was told I had a certain house, but then informed in the afternoon I didn’t. Tuesday morning I was told I had a different house, invited for a look around, and assured and re-assured it was going to be mine in about two weeks’ time.


This morning I was told, well, maybe that house, or maybe the first house. This afternoon I was told they had no idea where I’m going. I may even have to live somewhere temporarily - after no less than a two week stint at the B&B – before eventually moving into a permanent location.


Now, please don’t get me wrong, I’m not ungrateful in the least. I think it’s safe to say I have a deeper than average appreciation for the social housing system in the British Isles. But is it necessary to make me feel like I’m trying to grab hold of my school bag while bullies play catch?


It’s not like they didn’t know my flat wasn’t up to regulation. We’re not talking about an ordinary slum-lord; we’re talking about the local housing authority. I’ve been living in the flat for eight years – beginning two years after the current fire regulations were in place. I didn’t let the damn cat out of the bag either – they did.


I know what’s happening. Whenever commissioners’ houses become available, it creates a chain of moves involving people who are in the system already, up or down-sizing, and people who have been on the waiting list. Because my situation is an emergency (eviction by the fire dept.), they’re trying to wedge me into an already existing, complete chain. I’m getting messed around because nobody in the chain wants to be the one inconvenienced.


What gets me is they could have admitted I needed re-housing as a priority years ago and I could have been in a housing chain naturally, instead of forced into one. It’s not just the fire regulations either. I’ve had yearly medical certification to say my current damp and cold accommodation wasn’t appropriate, for several reasons. (The waiting list is governed by a point system. You get a point for every six months and extra points for things like un-heated, damp or unsafe housing, as well as medical certificates. They weren’t taking fire regs into consideration in my case, although I was getting near to the top of the list. I’ve been on it for eight years.)


Am I being churlish? On one hand, I’m grateful for the social housing system - I can’t afford private sector housing. I understand that a housing chain is being disrupted because of me. Other people are being inconvenienced too.


On the other hand, my landlord allowed a crisis situation to develop unnecessarily. I’m being far more inconvenienced than anyone. I can’t stay in the B&B during the day as it is off-season and the proprietors both work, so I have to traipse back and forth between the flat I’ve been evicted from and the B&B, for an unspecified amount of weeks. I have no idea where I’ll end up. They’ve dangled places in front of me and snatched them away again. All this could have, should have, been avoided.


I’ve been fairly calm up to now. I’ve been cooperative and upbeat. Yesterday, when I thought I knew where I was going, I was relieved. Today I’ve been – I don’t even know what word to use, there’s so many to choose from – there’s frustrated, pissed-off, dejected, depressed, and anxious. I’m scared too. There is a chance I end up somewhere worse than where I am now. I’ve also had veiled threats of ending up on the street if I make too much of a fuss.


Tomorrow I’m going to attempt some advocacy on my own behalf. I am done with giving them the benefit of the doubt that they’ll do right by me. I wish I had a case worker, but they seem to be non-existent for someone in my position. I’ve been in contact with my ASO in Liverpool but they can only advise me so much because of the slightly different systems. I’ll be in contact with my doctor tomorrow.


I hate to think what all this is doing to my CD4s. A year ago I wouldn’t have worried – but a year ago I had plenty to spare.


Thanks for listening - I’ll keep you posted.


Buckle Up Tight and Strap on the Helmet!

| 8 Comments

2007 looks set to be an action packed year, full of changes and - no doubt - a few plot twists along the way. I think it’s going to be one of those years where I need to buckle up tight and strap on the helmet.


*~*~*


On the HIV front, my virus and I will be commemorating ten years together and we just might toast it with a cocktail. Last year saw my CD4s show a definite trend – my first ever. (Jan, 787, 32%; April, 628, 29%; July, 550, 26%; Oct, 447, 26% - VL at or below 18,400 through the year)


Many of you probably see where this is headed… to the corner of Time2Start Boulevard and WhatCombo Drive. I’ve been cruising down NoMeds Parkway for quite a while now and knew my exit would come up sooner or later. I’m waiting for the next bit of map – the labs I had done the other day. It’s a Magical Mystery Tour and each bit of lab work is a clue to the journey’s next leg.


The Wizard and I haven’t talked first line combos since 2001, so I figured it was time to ask for an update. These days he’s using Kivexa or Truvada with Sustiva. Atripla isn’t approved here yet. We agree that only my labs will tell, but I probably have a 50/50 chance of my numbers bouncing up again. And yes, it also means I may be on meds before the year is out. The doc ordered an HLA (abacavir sensitivity test) and my yearly HCV viral load along with all the standards - I’ll have my results on February 27th.


I feel very calm and accepting about this. I first noticed the trend with July’s results and I, well, I didn’t exactly panic, but I did become anxious for about a week before I got it back into perspective. When the trend continued in October I was disappointed but not dispirited. It wasn’t resignation, it was acceptance. I’ve always dreaded the meds, not because of the side-effects, but because I don’t have a good track record for remembering meds. I’m frightened of ending up resistant. I’m lucky - I’ve lasted med-free into the era of once-a-day dosing and for that reason I know I can do this now, if need be. I can manage to remember once a day.


Either way, I know I’ve got at least six more med free months, very possibly more. If my CD4 is above 300, I’ll wait the standard three months to check again. If it’s below 300, I’ll ask to be checked again that day (Feb 27) as it will be six weeks from my last draw - and we’ll take it from there. I want at least two results well under 300 before I start. In the meantime, I can learn more about the drugs. I know the basics, but haven’t really put any of them under the microscope – yet. Yeah, bring it on!


*~*~*


On the home front, I was evicted from my flat today. So far it’s informal, on orders of the Fire Department, but it will be formal as soon as the fire regs violations paperwork hits a desk or two on Monday. I’ve been on the local housing authority’s waiting list for eight years and this eviction – by the same local housing authority – means I will be moving, next week, to a house. I finally have enough points with the immediate threat of eviction to get a house. The fire officer initially wanted me out tonight and I’m only permitted to stay in my flat for the next few days on the promise I sleep in my daughter’s room. (Girl Scout’s promise!)


I found out at five this evening, with two fire officers, four local authority employees, my partner (not live-in) and I all squeezed into my tiny living room. What a few years of doctor’s letters supporting my housing application couldn’t do, a fire officer and his clip-board did in minutes. For the record, I didn’t have anything to do with getting the fire officers involved - but I won’t tell you that particular gem of a story as I do not wish to embarrass the hand that holds the house keys.


I’m not sure what house they’ll allocate to me – the local authority guys were frantically trying to figure out where from the available stock they could re-house me at such short notice. Ah well, no matter where I end up, I will have central heating! For the first time in sixteen years! Crank up the heat and par-tay! No more washing mould and mildew off the bedroom walls! No more freezing in the bathroom! I’m going to have a real kitchen instead of a closet! I’ll be able to cook!


Yahoo! Whippee! Yay!


OMG I’ve got 1000 or so books to move. Oh. Dear. Hmmm…


I hate moving at the best of times and doing it at a few day’s notice is going to be… ~sigh~ It’s going to be interesting. Challenging. An interesting challenge… It’s gonna be one tough week. I’ll feel a lot better when I know where I’m going, but I probably won’t know until Monday at the earliest. In the mean time I’ll get packing and start reminding myself to keep an eye on the big picture. The upheaval will be worth it in the end.


*~*~*


On the personal front, I have another big change coming my way later on this year when my daughter goes abroad to study at the University of California, Long Beach. I’m really going to miss her. I think I’ll stay buckled in for that adventure too.




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This page is an archive of entries from January 2007 listed from newest to oldest.

November 2006 is the previous archive.

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