I have another blog?

I didn't, and still don't, remember this blog. I blame fibro-fog, not age, it's fibro-fog. Yup that's it.

I don't remember this blog at all, it shows how my health and life has changed so much and what gets lost in the tussle.

I have a few blogger or rather blogspot - same thing really - blogs. One on writing and two on disabilities. These are the three sides of my life blogs. My love of writing, and my life as a disabled person.

The baby boy mentioned in posts on this blog is now an almost 4 year old disgustingly healthy and active little boy. At the summer holidays he will just be finishing his first year at nursery school. My eldest nephew moves up to secondary school after the summer holidays.

I am now walking - or rather crawling - around on two crutches. My specialist at the RA clinic has changed, the one I didn't like and wasn't the least interested in my records or what I said has retired I reckon. I have been seeing a lovely doctor for the past three years. I am currently undergoing physio. Yes again! As my RA has moved into my shoulders as well. My physio is hoping to discharge me soon with my new shoulder exercises and the shoulder pulley he gave me a month back.

I am also attending an Occupational Therapist who to be quite frank isn't all there, she seems to base her vision of my future in rose colour glasses terms. A good example? My lower limbs have degenerated so badly, as well as my hips/back and my shoulders that both her and OT at the OT Department (council) say I need a walk in shower as I can't manage into/over the bath even with another person lifting me.

But the OT says that because my semi house has an upstairs bath they don't install them. The OT's from the council's only idea was to have my parents ask to be rehoused in a flat where they would then put in the shower I need. Not likely as my parents had to move here in 2001/2 because of both my disability and my father's.

The OT at the hospital says this is because I might - and I stress might - someday degenerate so badly that I can no longer manage the internal stairs and if that happens and I have to move then it's a waste of money for them to put in the shower. So they don't.

At least that's how she explained it to me. Her bright idea? Was for me to move into a flat by myself and get the walk in shower.

So it would cheaper for the council to rehouse alone and have to give me at least housing benefit and council tax benefit as my only income is disability benefits and I can't afford to rent a council house let alone pay expenses and buy those things. What do you call them? Oh yeah, food!!

Also I would probably need to have a carer come in and help me as my Mother acts as my carer, without any financial help i.e. carer's allowance, and if they move me to this mythical flat she doesn't drive so she couldn't be expected to run across to my flat to help me several times a day. Or is she?

Anyway I might not be an accountant or similar but wouldn't it cost the council more money to rehouse me independently and make me eligible for more benefits than to install the shower? Especially as I would be getting the shower anyway!!

That and given her attitude towards my increased pain and majorly decreased sleep I have lost all confidence in her ability to help me as she promised she would. One of her biggest worries when she first assessed me is that I had to rely on my elderly mother to help me with the basic daily tasks including hygiene. She wanted to help me become functionally independent so I wouldn't need to rely on her to physically help me esp. in regards to person hygiene.

When I said I didn't think 'it was a good idea' to me to ask for my own flat from the council as she phrased it she wanted me to get instead a plastic swivel seat to swing me into/out of the bath to use the current elderly and less than reliable shower we are using.

When I said this wouldn't do me any good because I can't physically lift my degenerated lower limbs into the bath and forget me using my arms to swing me as 'hello' I have very bad RA in both shoulders now. But her answer, 'Oh but your mother can lift your limbs into the bath and swing the seat around for you'.

My thought, 'so much for making me functionally independent if I have to rely on my 70 year old mother to physically lift me up into the seat (it's high, it's a blank over the bath with the swivel attached and the seat on top) as I couldn't physically lift myself up into it as it's a big heavy and high thing. Then she would have to physically lift each of my legs - either together or individually - into the bath and then rotate the seat to get me under the shower head.

As due to safety you can't wait till I'm under the shower to switch it on due to surges in both hot and cold water until it hits the right temp that it's set at, she would have to lift me into the flowing water what she couldn't do without soaking herself. She would then have to wait for me to finish before reversing this all. Only not only is she is soaking wet clothes, why get two sets of clothes soaked?, but I will be slippery with the water now and common sense says it will be harder for me to get down out of this high chair for want of a better word.

That said the only thing I said to her is even if my mother is willing to do this, and she is, what happens when she's not able to help due to illness. Or if she hurts herself lifting me? Or heaven forbid she isn't around?

The expense of installing this seat could be around £300 if the prices in the brochure she showed me the seat in is anything to go on, and as my mother is turning 70 this year, how long would this seat be usable for me?

It would be a complete waste if it only did me for a few months or a couple of years before I'm back where I am now. Washing myself with a bowl of water and a cloth by hand while sitting on the toilet.

All right I'm getting depressed again so I'm off as my hands are really beginning to hurt me. Oh, didn't I mention before she also diagnosed me with Carpal Tunnel Syndrome in my wrists/hands as well as my RA.

Near Misses

Well I've just returned from picking my middle nephew up a nursery school. Reaching a mini roundabout that I use daily when doing the nursery runs and quite a lot other times as well I had a near miss. I looked right saw no one, I then moved directly onto the circle doing around 20mph and my Mum yelled 'watch out'. Automatically I break upon not only hearing her but seeing a car appear directly in front of me. I can't remember seeing a car come down the incline from the street on the right. I was about to apologise when the other driver toots her horn, gives me a rude finger gesture and mouths at me that I am a something b****rd. Needly to say I didn't feel inclined to apologise after that.

I can't say who was at fault, either I missed seeing her, or she came down the steep incline doing the 30mph speed and rolled straight onto the circle (which as I don't remember seeing her she could have done) or whether I missed her myself.

Either way I was willing to apologise. Neither car touched as we both breaked immediately but after the rude finger gestures and even ruder swear words she mouthed at me I didn't feel the least bit inclined to do so.

As my driving instructor told me, 'you will be involved with more near misses than you ever will accidents unless you really don't pay attention.' As I pay attention, generally more when I have one of my nephews in my car than I normally do, I tend not to have too many near misses. (Cross fingers, touch woods and cross myself speedily). Usually my heart is pounding when I do have one but this time I wasn't even startled in the least. Generally when I am in fault my heart pounds ten to the dozen and it takes me weeks of extra careful driving to calm down again to normal.

Anyhow that vented back to the subject at hand, I have been working on my pixelling. I am finally getting the hand of my new PSP X2 program. I've had it for a week now and am finally able to start working on colouring some lineart/dolls. I haven't went into the more complex aspects of the software but am getting ahold of the basics at least.

I am also going to be working on revamping my website, I have just renewed my domain for 2 more years, and my hosting for 12 months, and am now ready to do a much needed spring clean. I transferred a lot of files from my old laptop in the past week or so, including a lot of my membership content across to my external harddrive.

I desperately need to update my site. I can do with revamping my memberships site, as some members sites have to be switched from current/lifetime to closed.

Anyhow once I get a (free - I've spent enough money on software to last me the rest of this year) web editor to work on Vista I will be able to continue with my plans to refresh my pixel sites.

Well that's all for now. Check back later, I hope to have some progress to report then.

Internet Up and Running ... Now onto...

Well my internet access is up and running fine. All things great now. Even switched over files and passwords etc. about my various memberships.

Great, but good always tempers bad, I have had to order a new graphics software as Windows Vista isn't compatible with my previous version of Paint Shop Pro. After checking around purchasing a new version of PSP was the cheaper alternative to use with Vista. As I have several gigs worth of PSP graphics I needed a program which could use the .psp/.pspimage format as well as use it to continue creating my own graphics from my many memberships.

I found several sites (including at least one membership site) that have disappeared completely since I last dabbled in my pixelling.

I have puchased a new copy of the latest Paint Shop Pro program which should arrive tomorrow (fingers crossed) and I can return to doing some new pixelling without worrying about lack of harddrive space or slower running programs. A problem which has cursed me for the last year or so with my laptop.

Also apparantly the boxed version I ordered from Amazon also includes a 2GB usb flash drive with it. So it will be handy for saving all my current pixel graphics on and keeps them off my main hard drive.

I found I had 4 to 5 Gigs of graphics content to move from my old laptop to my external hard drive. Between my downloaded content from my current (and past) memberships and my own graphics. Some completed and a lot in progress.

So, that said I hope to get back to pixelling soon. It should be a nice change, I've been using a touchpad on my laptop for months so it will take time to get used to using a mouse again. I still find myself reaching for touchpad when surfing the web or going to access programs/files on my hard drive. It's an automatic thing, I didn't realise how used I was to using the touchpad until I found myself reaching out to do so when surfing the web this last week.

It's strange how used you get to somethings, I didn't realise it myself, until I reach out on auto pilot to move a page down or something and realise there is no touchpad and I have to reach over to my mouse instead. It does seem to take a concentrated effort.

Well that's all for now. I'll just sign off here.

Goods News and Bad News (Of course!!)

My new desktop has arrived and is working. Unfortunately I cannot access the internet at all from it as my USB modem from AOL isn't Windows Vista compatible.

I thought I would have to purchase an modem router to access my internet but my brother (also an AOL customer) suggested contacted AOL and seeing if I could upgrade from Broadband Silver with them and that way receive a free router.

After three separate attempts I finally got the right info. I will need to upgrade to wireless router to use my AOL access on my new desktop, but as I have an active contract I can't upgrade to wireless until the contract expires. I have been with AOL for several years and was offered a double speed download last May but had to promise to stay with them for a minimum 18 months before switching ISP. So either I purchase one for £50 - £60 myself and use my current membership or have to use my laptop for any internet based function until October this year.

Rather irritating as my current modem is OK and I like my Silver package deal but Vista just won't support it at all.

I also can't register my computer or my windows vista (or any other software) at all without access and the computer won't let me use many of the programs on it without registration first. I've found I can't even switch my pc games from Iwin or Bigfish games to my new desktop without internet access so I can't even play games on my new pc. I have had to shove it to the back of my desk and continue using my old laptop still rather dissappointing after waiting so long to get a new computer and finally have it and can't use it much at all.

Grr ...

Happy New Year

Well, christmas and new years is over for another 12 months and it's back to the norm.

I am due back at the physio this coming thursday for an hour (I'm looking forward to it, not!), I'm still at a loss to what this current round of physio is in aid of but there you have it.

After a third attempt to contact BCA ( a book club I have a James Patterson collection from) has ended in failure and non reply from them I am again looking at more late fees and missed payment fees if I don't pay them this month again. I am of the view I am not due them three months worth of fees, I paid them £20 (more than two months of fees last time, November) and should be due them only one month, this month, but it seems my saga with them is due to go on for yet another month without resolution.

I have finally got a new desktop computer, got not as in my possession, but as due to be delivered next Sunday. They were out of stock at my local store and stores within Scotland altogether. New stock is due on Tuesday but only 3 units (HP Pavilion towers) and I had to arrange to home deliver as if I waited and did a reserve and collect from my local store apparently home delivery items get first choice of all stock (even if they are reserved and collect) and there is a good chance that three other people will purchase the same item online or in store to be delivered and result in there being none left for reserve/collect customers.

So that added £20 to my bill off the bat. But it was the only way to insure I did actually get one of the small stock being delivered to the warehouse this week.

Rechecking their website to re-check the details of my new pc I was disturbed to find out that the pics on the site and the details on the site don't specify the HP media bay but the tower on display (in fact all the towers on display) in Comet today had one. So I will be on pins till next Sunday to see if my one comes with the media bay slot where I can expand my HD memory or not. I will be very dissappointed if it doesn't let me tell you. That was one of the main reason I went for HP and the Pavillion range to begin with.

So, next weekend I will have my new computer (including a 19" flat screen) if nothing goes wrong. I take nothing for granted these days as I have less than stellar experiences when purchasing computers.

I have also discovered that all the new computers I have looked at have been all Windows Vista so it will mean upgrading from XP which I have used for the past five years and gotten used to. I don't like how you don't get a recovery disc now and surfing the internet I have found that this version of windows didn't allow you to create one. So if my HD becomes unstable I can't re-install or recover, I have to purchase a new copy (with disc and official documents) and start with a fresh and empty drive. Believe me if that happens I will gladly downgrade back to XP which I totally love.

Also purchasing Windows Vista (even an upgrade) is pure extortion if the prices I have found are anything to go by.

I have also discovered a hidden cost to me personally. My broadband modem isn't compatible with Windows Vista because it doesn't accept USB modems. I will have to purchase a modem router which is about £50 in the shops on average, most are even more expensive coming in at £70-£100 a pop. So I am going to wait until I have my new computer and check the specs in person so to speak before purchasing a new modem.

Until then I will just have to use my laptop (with my USB modem) to access the internet.

Given that my bill so far is not shy of £600 already I am in now hurry to rush out a purchase a new modem. I will just keep relying on my laptop for continued access to AOL for now. £200 of my bill is my Christmas present from my parents, so I have around £400 to pay back to my parents before I even think of purchasing anything else. So that new modem is on the back burner until then. So my trusty 5 year old laptop (with it's missing three keys) will just do until which time I can afford a new modem at all.

I think I will have enough to do with seeing which programs on my laptop are compatible with Vista and transferring them over that worrying about setting internet access on my desktop will be distant last, esp. as my laptop is perfectly usable just sadly lacking in HD space/memory. Even more so as my CD/DVD burner has been broken for over 18 months now.

I bought an external HD late last year because of my space problem and I was doing fine with it but the last month or so more and more problems are cropping up mainly because of the age of my laptop I believe including a massive slow down of my system which caused the worse lagging I have had in more than five years since getting rid of my original desktop (a Packard Bell).

Plus my Windows is getting a bit buggy, I've had more shut downs/restarts and had to check my disks more times in December than in the last 12 months previous altogether. I think it's just getting very old and worn after more than five years of continually usage.

What a way to start 2009 (£400 in debt), but this computer should do me for years, I have five year cover from Comet (almost £180 of the total bill) which covers Windows Vista itself should it crash by accident (i.e. not caused my me personally) as well, they state a total replacement of either tower or display should they be unrepairable so I just hope that Comet's cover is worth more on paper than Dixons was for my Packard Bell PC.

Well, enough depression, I really should be celebrating, but I hate unwelcome surprises. The modem being one and the lack of media bay stated on the website under the specs when the showroom on had one. So until I find out if the tower they deliver has a media bay I won't settle.

Just keep your fingers crossed for me.

I will personally be guttted if my tower doesn't have one like the website photos indicate, all bar the smallest of the HP pavilion in Comet has the bay but the website doesn't show one.

Oh well, plenty of time to worry if it actually turns out to be so. Nothing I can do anyhow, it's bought and paid for and due to be delivered.

Well, from that problem and back to BCA, I'm off to try and find a different email address and see if I can get a response to my FOURTH email in less than 6 weeks.

Just Back

Just back from my first visit to the physio again.

Apart from the hospital doc's displeasure about my use of my crutch and the mobility when manipulating my hips I have no idea why he wan't me to re-do physio from the beginning.

Just like me and physio herself, Ellen something or other, had no idea why I had been sent to her as I had already did one whole round of physio about three years back.

She spent over half an hour taking notes but I feel she didn't understand half of what I was saying. She found nothing wrong with my hips at all. As for my crutch I tried to tell her I use it for long distance, uneven surfaces and steps etc., the same as the speel I went through with the docs. She had me walk a short distance without my crutch and then a little distance longer with it.

She seems determined to get rid of my crutch as well if I was reading her right. I stressed my need for it for when I have bad spells and stiffness outwith my usual norm. Also how I can't navigate uneven ground and steps unassisted.

I have to go back in four weeks time for a whole hour and she is going to try to find my file and hopefully see the notes made my the doc I saw plus see for herself what exactly he wanted. I tried to explain I never had written notes/exercise plan printed out per say. I was just given verbal instructions from the physio. Nothing written down. All I know is the stretching exercises I do morning and night now my memory alone.

She wanted my exercise plan next time plus wants to work on my endurance over longer distances unaided by my crutch. Get this, she says she wants to work on making my left hip stronger as using the crutch isn't helping it work as the crutch is doing the work of my hip. That's all well and good but unless she can make me less tired than now, straighten out my spinal column, fix my bad left side (leg esp.) and suddenly give me perfect balance I can't see it helping much.

I navigate my own home without my crutch except in extremely bad days. Keeping up with my physio at the same time. But the work isn't 100% flat and step free and without any hills to climb. Also I use my crutch to help keep my back upright, without it over extended periods of time I will become like those old ladies you see that walk around like the hunchback of notre dame.

She was also talking about an occupational threpist or some such thing. Unless she is going to provide me with 24/7 help at home and outside I don't see what else she can do.

I'm frustrated to say the least. The session seemed to start out so good. I thought a few visits and a review of my maintanence schedule would appease the doc., but now this physio seems to be pulling in all sorts other people including some other physio/therapist. I don't mind increasing my endurance a bit but I hope they don't intent to make me 100% un-aided in walking etc., I can't get into/out the shower without danger of falling and cracking my skull open, I dread being without the added help given by my crutch.

What almost had me falling over in astonishment was after I did the walk with/without my crutch she came up me going on about increasing my endurance over longer distances and how using my crutch will mean my left hip will never get stronger and my balance get better. I tried to stress my balance isn't just about my left hip but my back problems too but didn't know if I got through to her.

But then she says there is time for crutches later when you are older and less able to get around but now while I'm young and health, me young and healthy isn't that one a kicker. If swallowing 20+ tablets a day, suffering from RHA, FM, IBS plus my spinal problems (all 3 of them), is healthy I'd hate to be what she considered unhealthy?!

I have to attend at get this, 8.30a.m. for my hour appointment complete with my schedule from the last physio (which I never got in the first place) in hand.

I hope this doesn't go on too long before they realise there isn't much to be done for me. I'm going to detriorate from now on and I am happy for stay level and not get worse. Why can't certain docs/physio's be as happy. I think they are all given instructions from the government to get us back into work asap regardless of our personal health problems as long as the money cuts then need don't have to have their wages and bonuses affected.

I Hate Hospital Doctors

Well at least one in particular anyway. The last twice I have visited the rhematology clinic for my yearly checkup I have gotten the same doctor and he is never pleased with my progress.

Generally as long as my condition doesn't detrioate then all my other doctors, including my GP, are happy with me. I have been through no less than four rounds of physio of the last couple of decades. Three for spinal problems and once for my RHA. I have a perfectly good physio available at my doctor's offices but the hospital doctor refused to allow be to go to the physio that knows my spinal problems the best instead insisting on sending back to the hospital I went to four years back when the hospital originally diagnosed me. I don't know what he expects, I have a degenerative disease I'm not going to get any better regardless of the amount of time I am sent back to repeat physio. All I'll get is the the same exercises I have now, if they don't improve me further now I don't know what he expects by repeating the same painfully irritating procedure all over again.

Instead all he interested in is the fact I use a crutch to allow me to walk long distance, navigate uneven ground/stairs, help on bad days and help my balance which has been off since I was 13 and diagnosed with spinal problems and spend over 10 years wearing a back brace.

He's not happy because I use a crutch, that's all. Never mind that my condition hasn't deterioated any for the past couple of years. The medicine (which I'm on for life anyway, regardless of physio or any other treatments) and the exercise I take now has allowed my diseases to stay pretty even for over 24 months now, no deterioation at all, but he's still affronted that I still use a crutch for walking and balance. Given that I couldn't walk without physically being helped by one, sometimes two, people helping me during the first year or two of being diagnosed I think using one crutch and being indapendanty mobile is pretty good given my various medical problems.

I usually maneavour around my home and sometimes my brother's home without using it. I keep it with me incase of accidents, or coming across uneven surfaces of lots of stairs unexpectedly, or walking long distances or having to be on my feet for extended amounts of times. It allows me to rest and takes the weight off my knees/feet at these times.

Now apart from that and needing help with showering/bathing/hair washing I am pretty independant with everything else. Given the various medical problems I have I figure I am doing great. But apparantly not enough for this doctor.

I think he expects me be able to run marathons and do cart wheels or something. I've got some really bad news for him, without my crutch I wouldn't be able to do a lot of what I do, I also need the crutch for entering and leaving my shower or I risk falling a injuring myself badly. I have a handrail inside the shower but nothing on the outside and nothing to put any other handrails on if I loose my crutch.

So you imagine I am more than a little panicked about going back to the physio as it is obvious the only reason for it is that this doctor wants me to walk without the crutch for balance/support. Not going to happen, infact if the pain I'm in now is any indicator I am dreading being sent back again, my hips/back and left knee are now all stiff, swollen and painful and that's only from the manipulating the doctor put me through before deciding I need more physio again.

This is also the doctor after prodding me last year said he thought I had a slight back problem, this is after spending half an hour reading my file while I cooled my heels outside his door, and never once checked my x-rays and reams of paper about my history of back problems, over 20 years of history which he still is none the wiser about this visit even after I told him (again) that I had more than a slightly bad back, I had several defects on my spine including a curvature at the base of it. But still he still doesn't acknowledge what I'm saying even though the proof of my claims are right in front of him within the folder he is writing in.

Needless to say I don't have any confidence in this particular doctor and really wish I didn't get left with him again. I feel like beaming over the head with my crutch to see if it clears out his ears any, maybe then he'll have a good reason to be upset I'm using a crutch for once.