No worries with work

As I thought, there was no reason to be nervous. 

Spent most of the 4 hours there today sitting in a chair doing table-work. Was needed as they are short staffed in that area at the moment. Nothing at all strenuous. 

There were only two people so far who were after a detailed response regarding WTF happened over the last 2 months. The "I had an allergic reaction to anti-inflammatorys" response worked marvelously. 

I only showed 3 people the perma-cath. I think it's a bit full on for the general public though, may tone that down a bit.

All in all went fine, no worries at all. So there it is, I've made it back to work.

Have told the dept head that over the next 2 weeks I have a few appts that can't be changed. The doctors are generally booked out a month in advance at the hospital so I can't just move the appt to the afternoon, as it's booked already with someone else. Will miss 2 or 3 days of work over that. And with only doing 4 hours a day I won't be earning a lot off work as yet, so will get to keep some of the Sickness Allowance off Centrelink for a bit longer. I'll have to give Centrelink my work payslips though so the Sickness Allowance can be reduced accordingly. I'll keep the health care card as long as I'm on it. That thing is saving me a fortune on prescriptions; only $5.60 per script. It paid for my ambulance too that was called for my second stint in hospital.

Nerves

Feeling very nervous today. Seems silly, don't think I should be. It's only fuckin work tomorrow, have been there 12 bloody years. I guess it's to be expected after 2 months off, nearly dying, and all the questions that'll get fired at me that there would be some nerves involved. But FFS, after all the shit that's happened why the fuck should I feel any nerves at all? You'd think it'd be more like "meh" and just wandering in and clocking on. Perhaps it's the social thing, I do get shy sometimes. And I haven't actually seen these people for the entire 2 months. Dept head is the only one I've been in regular contact with as well. 

Perhaps it's because I've been somewhere so completely different from the work environment. How could I expect any of them to even begin to understand what I've been through? In fact how could I myself understand their position/lack of understanding? They've been simply plodding on as usual in the same old world of work, nothing new or inspiring. Such an enormous contrast of emotions, thoughts, ideas, and life.

Decided I better get some comfortable shoes, the other boots are good but too hot for summer. Just some runners will do fine. Will look in Target for those, they have a really good selection. Unless some of the other smaller shops that specialise in runners and name brand shoes have a shoe special on, then I'll get some better ones cheaper. It's important for them to fit well and all, as with all the physical lifting and repetitive movements you can end up with knee/leg pain and injuries over time otherwise. I'll have a look in the mall and make a good choice I think even if they are a bit expensive. Not much point in getting cheap and nasty shoes if you have to go buy painkillers later on.

Dentist dilemnas

It turns out that one of my back teeth was completely cracked, about a third of it came out when the dentist pulled the loose bit. He's put a temporary filling over it for now to see if it settles down over the next week. If there's no pain then he'll do something more permanent, but if it's painful still then I'm going to need a root canal. Whatever is exposed when the piece of tooth isn't there is very tender, hurts a lot when the air was blown on it to dry it before doing the filling. Must be close to the nerve. Have another appt on Friday afternoon.

Was so glad when I found out about the "chronic illness" thing. Dental isn't covered by Medicare here and I don't have any private insurance, can't afford it. But through this scheme for people with a chronic disease the gov pays for your dental work.

Bank Wars

I applied online for another credit card the other week. The bank is one that I've never had an account with before in my life, one of the big 4 banks here. Didn't think much would come out of it. I already owe about $10,000 or more on the other 3 cards. This came in the mail yesterday:

OMG I couldn't stop laughing! This bank must be insane! I'm up to my eyeballs in debt and they give me zero interest on $8,000! Comes at a good time, I guess I'll use that card when it comes and try paying off the other cards that actually have interest. 

It brings my credit card limit between the 4 of them up to a grand total of $48,000! That gives me at least a $35,000 line of credit still available even with the money I owe. Fuck! I guess I won't be suiciding anytime soon. Not until I've charged every last cent of that; would be going out in style.

No blood test today. Have the dentist this afternoon though. I have a cracked back tooth, very painful. Luckily I qualify for free dental paid for by the gov because I have a "chronic illness" (HIV).

Tail end of the GKC

Another blood test today, and urine sample. Doctor hasn't rung again after that first blood test this week so I suppose the potassium is OK now. Got some stuff from the hospital pharmacy for it, "Resonium A", sounds like something out of a science fiction movie. Have to take that for 3 days only, just got it today as when I got the prescription on Tuesday I didn't realise it was a hospital only one and found out afterwards when I gave it to my local chemist. The chemist didn't have it, and I couldn't be bothered getting a bus back to the hospital again. So I got it today when I went for another blood test. It's powder and you mix it up in a sweet drink. Doctor warned me it tastes terrible, but with some nice fruit juice it seemed OK to me. The consistency was a bit like fine sand, but the actual taste wasn't anything terrible. After what I've been through taking that was nothing.

Still have the perma-cath in. Have heard nothing about when it's coming out. Walked down the corridor from the Renal clinic today and got the bandage changed by the dialysis people. They were surprised it was still in. Been 9 days now since it was used. They tried flushing it out as it's evidently not good for it to go so long without flushing, and one of the tubes is no longer working, blocked for some reason. I have an appt on 7th next month but I'll be ringing them before then about it. I'll be having to go into the dialysis people just so they can change the bandage every few days. The weather is still hot here, and even just a little bit of sweating gets under the bandage and stops it sticking. After 3 or 4 days it needs changing as it's coming off. I can't do it myself as it has to be done with completely sterile instruments and bandages in a hospital environment, not on the bed at home. Oh well, I guess I'll be able to freak everyone out at work by showing them it!

Certificate of fitness for work

I feel like framing the bloody thing:

So Monday it is. Am a bit nervous, a lot nervous in fact. Not about the work but all the questions from people that they'll want me to answer. I guess I'll just have to have the story clear in my head and know what to say, before blurting out to someone about the HIV. It wouldn't be the first time someone found out about it by me mentioning it by accident; the neighbour last year found out that way. Luckily he took the news very well and is very supportive now. However I'm not willing to take that risk at work with the whole factory knowing.

Discrimination and ignorance still exists in workplaces regarding HIV, despite the laws. There was a guy in a support group a while back who told the story of his work. He and his friend of many years worked at the same small shop in the country, and he told his friend that he was recently diagnosed with HIV. Expecting to get support from the friend. The friend however went and told everyone else that worked there, the boss found out, and he was fired. Being only a small place and not unionised there was nothing he could do.

Gladly I work in a very big place, and a strong union presence on the site. Everything has to be by the book, and I could easily take the company to court if I was discriminated against (the union would represent me for free). But I'm sure the ignorance and stigmatism would still exist with many of the workers there, including fellow union members. The last thing I want is to have to deal with that. In fact I wouldn't be bothered, I'd just quit. I doubt in my mental condition that I'd have the capacity for dealing with such a drama.

Other than that, am actually looking forward to getting back to work. The biggest thing will be the feeling of independence again, and being in control. Lately have been looking at life as something where opportunities exist, rather than prospective doom. 

Getting back to work is a major step forward. And it didn't just happen. I have been very proactive in the whole process, pushing the doctors and in contact with the work dept head. Yes it was dependent on my recovering health wise, but in many respects I made it happen too. I ate well, rested well, arranged things with work, got the ball rolling. It wasn't just luck (although that was a big part of it) it was something I had a part in achieving. The sense of accomplishment is certainly a help for my head. 

Not bad for an HIV+ person, who only weeks ago was nearly dead. If I can accomplish that, what other opportunities are there? We have but one life.

Another good blood test result

The Renal team is monitoring my blood this week to make sure I'm OK without dialysis. I had some taken this morning, a full 6 days since the last dialysis. The creatinine  levels were still good especially considering the 6 day period. They've decided now to arrange some specific time for the perma-cath to be removed.

The doctor rang me late afternoon with the results. He was a bit worried about potassium levels being high though. Told me to not take the nightly blood pressure pill as that one can raise potassium, and to come in to the hospital tomorrow to get a prescription for some drug that helps with that.

Have sent an email today to the work dept head saying a Wednesday back to work start was looking a bit unrealistic, and that it would probably be Monday. Explained the hospital would be testing my blood this week to confirm I'm OK, and it's procedure that needed to be followed before starting work. I have to go back Thursday as well so they can do another blood test.

Stuck in the bedroom

A hot weekend here in Sydney, ugh. I used to like the warm weather here when I first arrived from New Zealand years ago. It was so nice to be able to go outside at night with just shorts on. But these days I find the middle of summer just stifling. Feb you can just about taste the humidity, and constantly sweating in the heat. Really uncomfortable. The sweat gets under the bandage of the perma-cath and I'm constantly having to try and stick the bandage back down. If that gets infected I'm fucked. The tube goes directly to the main artery to my heart. I'm a delicate flower these days darlings!

It's 30 degrees outside now (86 F), humid, just sick of it. Am in the bedroom in front of the AC. Not so bad in here, got a telly, DVD player, little stereo, old computer, phone, and the net wirelessly. Boring in the same room though. At least I'm not fuckin sweating to death. Would rather be in the lounge with the big telly, sound system, and high definition, but it's just too hot in there. The weather people says a southerly change is coming soon, so I hope shortly will be able to let a cool wind blow through the house. Temps can drop 10 degrees or more in an hour with a strong change.

Daughter went out to some "Rave" last night. Had some friends over yesterday and they all got ready in her bedroom. So there was this "rave" music blaring for a while from there, before they all went out the front door in this laughing group. I asked her about the drugs thing as she got caught with ecstasy a while back and had to go to court over it, think it really scared her. She was adamant she takes nothing now at these rave things, and told me about how she gets pissed off if any of her friends do. I tend to believe her as our relationship now isn't about me telling her what she should be doing, but more about giving her advice from my life experience. She knows someone from High School who deals and she can't believe they haven't been caught yet as they're so casual about it. She agrees with me if you deal it's about when you get caught, not if. She's come home today with a few friends, 2 have left and there's now only one guy friend in there. .... Dunno his name but have seen him in pics of hers.

Well I'm glad she's learned to have sex quietly, if that's the story in there. I don't care who she decides to have sex with, but it did get a bit awkward early on when she moved back in. I ended up texting her from my room at 2am asking her to keep it down! Suppose that wasn't as embarrassing for her as me knocking on the door. I apologised later saying I was just tired and felt sick and didn't mean to interfere. She was fine with it, but I haven't heard her since. It's a worry now when Simon comes again. I mean we're both rather vocal!

Adjusting to kidneys that work

I may be going back to work next Wed. I have an appt to see my GP Tues where he has to sign off on a list of appropriate duties given to him by the company for perusal. Also the amount of hours per week to start with, and anything else associated with OH&S. I will be asking to start the following Monday, and see if the perma-cath can be taken out before I go. 

I've also gone back to the original happy pill dose that I was on before the Great Kidney Collapse (GKC). For the last 2 months have been taking only half due to the kidneys, the theory being that as they weren't working properly then a half dose was as good as a full dose. Now they're just about back to normal, I thought it prudent to put my happy pills back to normal (I don't want another episode of depression like I had the other week, quite scary that one). This would all be no worries, but as I'm on such a high dose, going from half back to normal is a jump of 150mg a day up to 300mg, quite a lot. I doubt I'll get any significant side effects getting used to it again as I've been taking them for so long now, but I would like to have the rest of the week at home just in case.

Had a long chat with the dept head yesterday about it all. He rang me to tell me he'd emailed the paperwork to me for my doctor to look at (which I forwarded on to the doc). He to said how at the start he had a lot of doubts as to whether I'd ever get back to work, or even get to the point I was at now. I said I thought originally as well probably 70-80% chance I wasn't coming back. It looks like there will be some appreciation by the powers that be at work of the significance of my return. He also said that the focus has to be on abiding by what the doctor says and not getting ahead of myself, which of course is something I'll have to watch. Likely will start with only a few hours a day light duties and build up to a full day again, will see how it works. Have never been through this before with a return to work after sickness like that.

I imagine too I'd be keen to do a bit of overtime if it was available, but that I reckon will be out of the question for a while. I'm broke and in debt up to my eyeballs, but I guess will just have to live with it for now. I should give myself credit that the rent has all been paid through the GKC, and even the loan and minimum credit card payments for Jan and Feb will all be paid. I have gone further into debt, a couple of the rents I've had to do via credit cards, and all the groceries the last 2-3 weeks have gone on credit. The washing machine died in the middle of the GKC too and I got a second hand one on the cards. All up I reckon about $3,000 further in debt since end of Dec. But hey, can't be helped, and the new $2,000 one has an interest rate of only 13.5%. I'm saved!

Probably a good thing I'm broke anyway as I might have been tempted to go and celebrate the end of the nightmare at the pub. Strangely though I don't at all feel like drinking. *faints*. In reality I'd stopped drinking nearly completely 2 weeks before the GKC anyway, even thought feeling sick might have been alcohol withdrawals (but that was discounted as I hadn't been drinking enough for the intense sickness I was feeling). I was spending too much at the pub and simply wanted more control over my money was about it. But now it's more than that, I want more control over my head too. It has been such a bad nightmare the last few weeks, the delirium in the hospital and the hallucinations were like a bad trip. Being in control of my head is rather refreshing. 

My own space

Have been noticing this week how much I've been appreciating just being at home and in my own space. Not jumping up and feeling obligated to go out and do things, but just being contented to sit at home and enjoy being home. Have even had the odd night in front of the telly where I wasn't completely bored shitless with the crap coming out of it.

I don't bother with pay TV, free to air is enough for me. With the new digital they have a lot more channels now. Other night I started with Seinfeld, followed by The Middle. Then another station had How Clean is your House (where they clean up filthy houses) and then Hoarders. All interesting. This hoarder lady was a "level 5" and they found 2 dead cats in her house cleaning it up! Gross! But I was sitting there with incensed candles burning and an atmosphere of home. It's an old house, but it has a certain air about it.

I've been starting to get back into cooking too. Am certainly no master chef, but am known for the odd kitchen success. All adds to the feeling of home. 

There's the thing too with no obligation to do anything. Probably just as well with my head the way it is. Half the time I spend slightly dazed not doing anything at all. Nothing like a good brain injury to confuse. Told my work dept head that I've got half a mind to come back to work. .....

Suicide

So often it becomes a taboo subject. People don't understand it. They want to change the subject, make the person think of something else, deny the thoughts involved. When in reality being realistic about how you feel is the only way to deal with a problem. I came across this earlier online, as the subject has obviously been on my mind the last couple of months. 

jazzonia:

doctorconquest:

chelsea-smiles:

-earlyeyes:

chelsea-smiles:

i know this is meant to be funny and a joke but in my opinion suicide really is selfish. i’m not denying that depression is a terrible, soul-wrenching disorder that can tear people apart. that does not mean that suicide is not selfish. it is the easy, quick way out; it leaves your loved ones alone and to grieve over someone who left way before their time.

The point of this meme is to mock those that are privileged, yet deny others rights.
In this case, mocking those who say “suicide is selfish.”

saying suicide is selfish isn’t denying rights of others. it’s an opinion.

No. Saying suicide is selfish is not an opinion, it is incorrect. Saying suicide is selfish is no more of an opinion than saying clouds are made out of marshmallow. It is not a matter of opinion—it is simply incorrect. It is incorrect because the belief that suicide is selfish stems from the belief that suicide is a conscious choice, which is also incorrect. Suicide is not a choice, it is the result of pain exceeding resources for coping with pain. Suicide is no more a choice than dying of heart failure. When the heart endures more stress than it can handle, it gives out. When the mind endures more stress than it can handle, it gives out. Suicide is no more “selfish” than dying of heart failure.

Imagine you are having weights piled on top of you, one after the other. Eventually, no matter how strong you are, no matter how much stamina you have, you will give out and collapse under the weight. Does this make you selfish? No. It is simply that you have had more weights piled on you than you have the resources to hold. Suicide is the same. No matter how strong you are, no matter how much stamina you have, you will give out if the pain exceeds the resources for coping with pain. Suicide is the result of this.

You say that suicide is “easy”. This is also incorrect. Death is not easy. If you found out you were going to die tomorrow, would you be pleased because you are getting an “easy” way out of life? No. Nobody wants to die. People who attempt or complete suicide do so not because they would rather not go on living, but because they have no other way to escape unbearable pain. Attempting suicide is not “easy”. People who attempt suicide do so knowing that either outcome of their attempt is something that they do not want: if the suicide is completed, they will die. If the sucide is not completed, they will have even more pain added on to their already unbearable pain by facing potential physical damage and the stigma and isolation of being labelled as weak. Of being labelled as “selfish”.

You say suicide is “quick”. This is also incorrect. Nevermind that the suicide itself may be slow and agonisingly painful, depending on the available method—suicide means death, and death is not quick, it is forever. Destroying a computer that isn’t working is not the “quick” way of fixing a computer. Someone’s heart stopping beating is not the “easy, quick way out” of heart disease. Suicide is not a “quick way out”, it is the result of more pain than available resources for coping with pain.

You assume that all people who attempt or complete suicide have the coping resource of “loved ones”. This is not true. Even in cases where people with suicidal thoughts have people who care about them, they may not be receiving any support or help with their pain, because of the stigma and ignorance that surrounds suicide. Consider this: someone you love tells you they are having suicidal thoughts. You tell them that their thoughts make them selfish, as this is your “opinion”. Your loved one now believes that they are burdening you by being selfish. Your loved one now feels that they would be less of a burden to you if they were dead, even knowing that it might upset you. Your loved one’s likelihood of attempting suicide has increased.

If you are actually interested in learning about suicide and suicidal depression, I recommend the book Out of the Nightmare: Recovery from Depression and Suicidal Pain by David L. Conroy, or visiting this website, which quotes it and links to many other resources. If you are not actually interested in learning about suicide, then I recommend you refrain from sharing your uninformed “opinions” on death and mental illness, as you are doing indescribable harm to countless people with your ignorance.

“Suicide is neither wrong nor right; it is not a defect of character; it is morally neutral. It is simply an imbalance of pain versus coping resources.”

Absolutely perfect commentary.

^ please read this. A thorough and articulate takedown of the stigmatizing “suicide is selfish” myth. One of the best I’ve seen.
http://taniada.tumblr.com/post/1616895190/jazzonia-doctorconquest-chelsea-smiles 

Dialysis ends

The hospital rang yesterday afternoon. It was one of the head people in charge of the dialysis dept. She said she had good news for me but bad news for her; that I didn't have to go to dialysis anymore. Said she'd miss me as I was "very funny" and congratulated me for keeping a sense of humour throughout a very difficult time. I have to go get blood taken Monday for them to test it, so I said I'd stop in and say hello then. They're just down the corridor from the Renal team. 

The blood results taken Tuesday turned out to be excellent. The creatinine levels (at 900 when I went in hospital the first time) were at 115, almost back to normal. They will leave the perma-cath in for about a week they said just in case, before taking it out.

So it happened again. I survived. 

That's not to say I still haven't had enough. Am fragile. I need things to go well for a while at least. I won't survive another knock out blow if it happens soon.

Nearly back at work

we are putting together a description of duties so that your Doctor can check them and give you sign off to perform some or all of them. We have to go through that as part of OHS so that we have had Medical sign off prior to us allowing you to perform any functions.

I’ll have that later this week

Part of an email reply from my dept head at work. I've made an appt with my GP next Monday and asked for the "description of duties" to be emailed out to me from work by the end of the week so I can give it to him Mon.

This will be a huge milestone. I can't believe it in fact. After all the shit that's happened the last 2 months. I will actually be walking back into work. To be honest for much of the time I had many doubts as to whether I was going to get to that point, even to this point now. Feeling very emotional at the moment......  

It's hard to describe the feelings I'm experiencing. So close to death, so close to permanent disability (both mental and physical), so close to suicide. And all this after years of hell. Flattened on the floor after another knockout punch, this one a killer blow. 

I often remember one particular part of it all, probably one of the (if not the) lowest points. It was during the first hospital stay right after my GP (who prescribed the Naproxen that caused the allergic reaction) rang me to see how I was. I remember completely falling apart, ending up in the little multi-faith chapel there on my own and using the space to release. Remember sobbing in there, "it's got to get better...". Such terrible pain, such despair without end, such hopelessness. I didn't want to go on.

Yet now I'm nearly back at work. Paid employment. Independence. I survived. I got up off the floor somehow, kept going somehow. It doesn't seem real. 

Biopsy Results

"Acute tubulo-interstitial nephritis".

A bloody mouthful that one. The biopsy has confirmed the original diagnosis, and the prognosis is that the kidneys will mostly recover, although there are some cells that won't as they're too badly damaged (OMG it looks like my drug taking days are over! Shock horror!). In short there are damaged parts of the kidney in amongst healthy parts, a lot of those damaged parts will get better but not all of them. 

And I won't have to stay on dialysis. This was one of my big worries, that the condition would go from "acute" to "chronic", which would mean dialysis indefinitely. It was a great relief to hear the word "acute" and not "chronic" in the biopsy diagnosis. I see the Renal team in a couple of weeks, but the dialysis people are going to talk to them before that to see if they want to take me off dialysis before then (given the biopsy results). I'm feeling fine in between sessions and no problems.

I had a further blood test done today, although I left before the results came through. The hemoglobin was at a good level though. The most interesting will be the creatinine levels (the one that went from 90 to 900 in 3 days originally - waste products in the blood).

So looking good so far.

Regaining Control

Another visit to the psychologist today. It's been 3 weeks since I last saw him, and after that time he noticed quite a change today. I've put on a lot of weight (although am still about 4-5 kilos lighter than I was before the Great Kidney Collapse) and looked much healthier than the thin pale person I was before on the verge of getting a blood transfusion. Also the change in my mood away from the depression that was clawing at me. That was very bad, had not felt depression like that with such intensity since before I started the anti-depressants in 2009. 

We also discussed what was involved moving away from that depression. It has been a big contrast from it's grey world, to being away from it. One of the biggest things is the control regained over life. I find myself now planning a return to work, planning money, taking control of things instead of being buffeted by circumstances beyond my control. Feeling more in control, actually being more in control, has got to be a major positive mentally. So much of what's happened in the last few years has been out of my hands. 

There was of course the usual question: "Any thoughts of suicide?" I always reply completely honestly. This occasion was that it's still there as an option, but highly unlikely I'd act on it. Only this morning, feeling tired from a cold, awake half the night with the head and backache with it (a cold always seems to be worse with HIV) I said to myself that "I've had enough". And that's the truth. 

Yes, I seem to have landed on my feet yet again by some strange twist of fate, but it wasn't associated with any plan by me. It just happened. I could have easily gone the other way, but for some reason I didn't. Be it the support around me, chance, simply some unforeseen reserve buried deep inside me, or even just an unforeseen basic survival instinct, who knows? I'd compare it to being thrown head over heals when blind drunk, but managing to stand up again when the fall is over because my feet for some reason landed on the ground.  

A bit sick

Really tired today. Think maybe have a head cold daughter had through the week. Splitting headache, loss of appetite, just want to lie in bed. Did a bit of shopping earlier but don't feel like cooking it now.

2nd week with only 2 dialysis sessions

Encouraging. Two whole weeks with only 2 appts each for dialysis. Weight and fluid still fine, and not experiencing any dizzy spells or shortness of breath. I'm really hoping I can come off dialysis soon. That would make a huge difference, not only as a milestone regarding recovering but also mentally regarding my outlook. 

Some may think how wonderful it would be to be able to just sit around and get all this money off the gov for nothing. But personally I'd rather be working and being productive; doing something makes me feel like I'm worth something, and not worthless. I know some people make a lifestyle out of living off the gov, but I've never been like that. Have worked all my life, paid taxes all my life. Happy to take the help from the gov when I need it, but I'd not like to end up having to do that if I can help it.

Pouring rain here today. Very refreshing after the heat we've had.

The cat

 

She has been a bit suspicious of me since coming home from hospital. Think the poor dear got a bit of a fright along with my daughter. I wonder if the blood transfusions had anything to do with it as well; I've heard dogs can be very sensitive as far as that goes as there's the blood of lots of different people all mixed up in there. 

Now though she's back to her contented self. Sleeps in the bedroom at night, especially if the AC is on in there, meows in the morning to be patted and fed, generally sitting on the bed looking expectant. Photo is last week in the kitchen during the heat wave we had here.

$1,000, Centrelink to the rescue

It's taken rather a lot of BS'ing around, but finally it's all fallen into place with Centrelink. Needless to say today involved the usual amount of hassling, waiting, redoing, etc etc, but the outcome was worth the annoyance.

It turns out ever since I first lodged the form 3 weeks ago I was eligible for rent assistance. Why nobody there told me this is a reflection on the staff there, but after my income dropped to nothing it all came to light. This is worth a fair bit, and on Monday I'm getting back paid nearly $400 from the day I lodged the forms. And after that extra on top of every fortnightly payment.

The next fortnightly payment is due next Thursday, which with the rent assistance will make it about $600 I suppose. Not a lot to survive 2 weeks on, but certainly a more reasonable amount than $18! 

Hopefully will be getting back to paid employment soon anyway. Dept head is having a meeting with the OH&S officer Monday about it. Am in limbo right now; there's other things I could apply for if I was to be permanently off work, but there's no point if I'm starting back soon. Like the "Special Assistance Subsidy":

Special Assistance Subsidy is a rental subsidy given to people with HIV who require housing support and have the option to rent privately. To be eligible for Special Assistance Subsidy you'll need to apply for housing assistance with the Department of Housing. You'll need proof of your HIV status and income.
http://www.acon.org.au/hiv/housing-support/Accommodation-Options

Although these things are all well and good, there is a down side to them. The lack of independence probably the biggest factor for me. I've been involved with both the Dept of Housing and Centrelink before, and every step of the way you're required to jump through all their hoops and follow every rule they declare. If you actually earn more they make you feel guilty about it by cutting your payments.

$18.58 cents a fortnight, *sheesh*

WTF? That is the sum total of my  Centrelink payments through the Sickness Benefit, which I finally got notified that I have been approved for. This has been calculated according to the half pay I was getting from work and the payments adjusted regarding that. I also get a health care card though, which is much more useful as it entitles me to a lot of concessions like free doctors, cheap prescriptions, and half price public transport.

This would all be fine had work not decided to stop paying me the half pay and not tell me. I know they didn't need to pay me anything at all, and it was very nice of them to put me on half pay for Jan with the view of "reviewing" it at the end of the month (which is all they told me). But it would have been nice if they had of told me last week that that was going to be the last payment. Instead I go online today to pay the rent, only to discover there's no fuckin money in my account. I ring the work dept head and it's "Oh yeah, that ended last week". I'm like why the fuck didn't you let me know? On the same day I get an online letter from Centrelink telling me my payments are $18.58 cents a fortnight on account of my work income. 

So I ended up with $360 rent due by Monday, and no fuckin money to pay it. *SHEESH!* I had to transfer the lot from a credit card as a cash advance, at some BS 20% interest rate I suppose, to pay the rent. 

I then proceed down to the Centrelink office. I explain the situation, and of course I need more fuckin forms to fill out concerning my new circumstances! The news isn't all bad though. They give me a temporary health care card while the other one is coming in the mail. I will go onto the full pay of the Sickness Benefit, although it's not a lot it's better than fuckin $18 a fortnight. I of course need a letter from work stating this and that. It turns out as well I will qualify for rental assistance, which is another form. Tomorrow then is another visit to their office.

During all this I'm finding myself having to write things down, asking the bloke at Centrelink to write down what I have to bring in tomorrow, as I'm having trouble remembering it all and keeping it organised in my head. Everything seems quite complicated and involved. Normally it's not that noticeable, but certainly in situations like this the limitations currently being faced due to the brain injury are much more apparent.

And now I find myself poor. Lucky for the credit cards! I still have $17,000 to go before I max all of them out! And it's not exactly as if I'm partying. I dunno WTF is going on with the banks, but they must be nuts. One of them, who I've never had an account with before in my life, just gave me a $2,000 credit card that I applied for online, to transfer the balance from others of mine to their rate of only 2.9% for 6 months I think. 

I don't like budgeting though. Not good presently. Aren't going crazy, but given my health issues it's impossible to exercise restraint at the supermarket. My body needs nutrition, proper food, fresh stuff, good quality. Fucked if I'm going to try and survive on macaroni and cheese.

Brain Damage

A bit of a realisation today. The symptoms are continuing. This was also part of the discussion yesterday with the Infectious Diseases team as to how I was going with it. It happened from lack of oxygen when I was found unconscious at home on the bed with pneumonia. Certainly a huge improvement in the last month, but still am dealing with limitations involved. 

I still have trouble thinking of some words, although this is improving. I found today however I was just completely hopeless when faced with quite a few tasks to perform. I ended up dividing them up and assigning some of them to tomorrow as it was just too much for me to get my head around. Nothing particularly complicated, just a number of things to do that combined all seemed too much and insurmountable.

I does make me wonder how I'm going to go at work when the time comes. It seems any ability to organise is non-existent at the moment. Perhaps this will improve with time.

Did a spot of Googling. This I can definitely relate to:

Other symptoms can include: hallucinations and delusions; increased agitation and confusion; depression and other mood disorders; personality changes, such as irritability and a reduced threshold for frustration; and an inability to focus or concentrate.
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=575 

Infectous Diseases team

After the 4 hour dialysis today I had a quite interesting appt with the Infectious Diseases team, who are in charge of WTF to do about my HIV medication now that there's all this complicated shit going on with my kidneys failing. The discussion included the prospect of going back on to HIV medication, and the possibility of returning to work in some capacity.

I have been quite concerned about not being on any HIV anti-retrovirals at the moment. My worries are that by being taken off them (due to my kidneys not being able to handle them) then the HIV gains the upper hand; the virus mutates and develops resistance to not only those drugs I was taking, but also co-resistance - that is resistance to other drugs in the same class as those I was on. So my choices for future treatment then become limited. After expressing these concerns I was told that due to the way I was taken off them (put on Kaletra instead - another HIV drug) then it was unlikely resistance would have developed. I hope this is the case, otherwise when I do go back on to medication in the future it may end up quite a process to find a drug that actually works. 

There's been so much shit going on the last 2 months, I don't even know what my current CD4 count is, other than the lowest it got was 450 in ICU, a relatively healthy number considering I'm taking nothing for it. The doctors are therefore not at the moment concerned about the HIV too much and it's more about getting the kidneys back into working order. It all very much depends on the Renal team, the results they get from the biopsy, and the course of action they take, as to what the Infectious Diseases team does. I don't however want it to be some kind of an emergency thing to get put back on medication though.

I also asked about the possibility of a partial return to work, which there was no objection to as long as OH&S was followed. No problem there as work is a big place and they're right into that. They would put me on light duties. I'm still getting half pay from them, which is enough for rent and food. It's been about 2 months though since I was there, it'd be good if I could at least show up to confirm I was still in existence! The dept head has assured me a number of times that I do have a job to go back to, but cripes, 2 months off?

I've continued to feel the depression lift. It's like slowly moving from a dark grey world of doom into a world of colour and form. I noticed in the 6 hour lie flat thing after the biopsy yesterday, how good it was now to do something as simple as just listening to music again. You can appreciate the art involved, and the meaning is much more apparent in much of it.

Biopsy

Got the kidney biopsy done today. I dunno what exactly they test for, or how many tests, or how long it takes to find it all out. Had to go in and went up to the original Ward I was on during the first hospital stay where I nearly died the first time, in a bed next to the room where I got the water pump thing put in so the mobile dialysis machine could be used on that ward. All the staff there remembered me and asked how I was.

The biopsy went without a hitch, and the doctor showed me it on the computer; some kind of ultrasound thing he had going on there to guide the needle in. Had to lie there for 6 hours afterwards before going home as they have lots of blood vessels and are prone to bleed after such a thing. No problems though, all very boring. I read a book and listened to music.

When the depression starts to lift

You stop falling and your feet land on the ground, ending the paralysis. You can move again. It's almost as if there's some outside force, providing stability and resilience within. A light comes on and starts to shine across the dark and dismal landscape that has been your dwelling place. You begin to see things in that different light. Colour returns to your world, design, the panorama of life is visible. Hope returns. 

You start to plan again. Think of the future and what you can do in it. See possibilities that may be. Think of goals to work towards. Yes, you got a knockout punch and ended up on the floor, but you've got up again. Somehow, without even realising it, almost simply by habit, you've gotten up again and going to carry on. The knockout was yesterday, this is today. You don't know how it happened, how you did it, how you kept going. But you did. Perhaps it was just a matter of hanging on until tomorrow?

There's a sense of huge relief. Depression can be a huge obstacle, completely paralyzing in every way. Suffocating. Sucking the life out of you. To feel hope, to have even a glimmer of light shine across a dark existence....   You realise what could have been considered the end, isn't. Life does go on. Bad things do pass. 

The knockout punch was not the final chapter after all. There's more to write. More to say. More life to live after all. 

Four days without dialysis

So far so good. The first 4 day stretch without dialysis and all appears to be well. No waking up in ICU, no worries about having to go to the hospital, no feeling funny and confused. Apart from a bit tired last night, nothing. 

Will see how the weight situation is on their scales there, which gives an indication of fluid. If the kidneys aren't producing enough urine the fluid just goes into the body, ack. Swollen legs etc. My scales at home look like the weight is constant, but they're not very accurate.

Edit: My weight was perfect.

Issues with returning to work

I've sent an email to the dept head asking about exactly what's involved with my returning to work. I assume some sort of lighter duties than my normal 3 tonnes per day lift of paper will be the go, and working within the air conditioned area so the Perma-cath bandage doesn't come off with sweating (Sydney is the hottest in Feb). Am not in a hurry waiting to hear back from him, but said maybe to see how the next 2 weeks went with dialysis on only Tues and Sat's, giving Wed's-Fri's free. Maybe a day or two during those Wed's-Fri's would be a good way to start getting back into the job.

I'm feeling a bit nervous about it. Not as it's a challenge re skills as I'm well experienced and capable in various other work quite apart from my usual lifting slog, but there's other things involved. The whole thing about being around people for one. There's quite a social scene at the place. It's a big site and being there for as long as I have there's a lot of interactions involved. Needless to say hardly anyone knows of my HIV status, only those who need to know in authority. How do I explain to the next bloke on the shop floor WTF just happened for me to have 2 months off work? 

I've said before that if my HIV status went through the whole factory I'd just leave. There's people there who just wouldn't understand. Probably not say it to my face, but consider I had the plague and be dropping dead shortly. Family parents from Sydney's western suburbia, who no matter what you said to them just wouldn't understand. 

The Grim Reaper add on the telly back in 1987 did a lot to limit the spread of AIDS here in Australia, but unfortunately some of the hysteria remains. At the time it was shocking and controversial as it was the first time such things had been talked about so openly on free to air nationally broadcast TV. It made a huge impact, and to this day in Australia the HIV virus remains largely confined to the gay community here, unlike other countries. However for family people in suburbia today, this add is still what comes to mind when HIV/AIDS is mentioned, and in some ways it reinforces prejudices against gays:

For all the good that it did in limiting the spread of  HIV/AIDS back in 1987, the above add remains the limit of some people's education about HIV/AIDS to this day. It's 24 years old.

Then there's the thing that I'm just not the same person I was 2 months ago. How could I be after what's happened? I don't actually like being around people at the moment and am finding I get quite annoyed on buses and in shopping centres. I don't really know why this is. Maybe it'll be different with people I've known for years, likely so. 

A note re Google Chrome

I've gone back to using Firefox. Google Chrome was redirecting the Blogger links to my blog in the sidebar to other weird and strange sites on the net.

I complained here

A warning: Tenofovir and Naproxen

Why this isn't widely known I dunno, other than it's early days yet I suppose with these HIV drugs. I decided now that my head was getting clearer to do a bit of research regarding what happened to me. 


I was prescribed Naprosyn (brand name for naproxen) for back ache. I was taking Viramune (nevirapine) and Truvada (tenofovir) for the antiretrovirals. As described on the blog, I went from completely healthy to the verge of death in a very short time, and it was somewhat of a journey of discovery by the renal doctors involved at the hospital as to why. In the end the diagnosis was that the Naprosyn and the antiretrovirals interacted in some way, and I had an allergic reaction to that which caused acute kidney failure. I've had to stop work to attend dialysis for this and nobody knows if the kidneys will properly recover.


It seems, although rare, that the association between Naprosyn and Truvada (tenofovir) has been noted in recent times. This from 2008 is chillingly accurate to my experience:

To the Editor:

Although infrequent, tenofovir has been associated with chronic renal dysfunction and Fanconi syndrome, usually in the setting of multifactorial causes for renal dysfunction or in patients with underlying renal disease. We report four cases of acute renal failure in patients with other factors for renal failure, in which tenofovir in combination with nonsteroidal anti-inflammatory drugs (NSAIDs) may be a contributing factor.

A 48-year-old man with hepatitis C cirrhosis, Child-Pugh B score of 8 out of 15 and portal hypertension had mild, but stable, renal insufficiency (usual creatinine level 115 μmol/L and creatinine clearance 49 mL/min). He was taking an antiretroviral regimen of lopinavir-ritonavir, didanosine (adjusted dose of 250 mg) and tenofovir for 10 months. His CD4 count was 180 cells/mL and his viral load (VL) was less than 50 copies/mL. He was abstinent from drugs, but continued to drink alcohol on rare occasions. The patient was on furosemide and spironolactone for the management of ascites. The rest of his medication included co-trimoxazole, hydromorphone, quinine, omeprazole and dimenhydrinate. The patient received a prescription of naproxen, 375 mg three times a day, for backache. Five days later, he was admitted to hospital with a deteriorated general condition. His creatinine level was 467 μmol/L, urea concentration was 32.6 mmol/L, phosphorus concentration was 1.97 mmol/L and potassium concentration was 14.1 mmol/L. Hydration and potassium chelators were given, and all his medications withheld. A diagnosis of acute tubular necrosis secondary to naproxen was made. His renal status was considered irreversible, and the patient died two days after admission.

The second case was a 63-year-old man suffering from hepatitis B cirrhosis with splenomegaly, esophagitis, chronic bronchitis, personality disorder and HIV for 15 years. His HIV disease was stable on an antiretroviral regimen of tenofovir, lamivudine and lopinavir-ritonavir. His CD4 count was 240 cells/mL and his VL was less than 50 copies/mL. He was using cocaine but not alcohol. The patient also took olanzapine, paroxetine and bupropion. He had recently started taking naproxen 500 mg twice daily. The patient was admitted to the emergency room for hemiparesis, hematemesis and fever. Rhabdomyolysis and acute renal failure secondary to cocaine intoxication was diagnosed. His baseline creatinine clearance was 73 mL/min (creatinine level 105 μmol/L). On admission, his creatinine level was 272 μmol/L, urea concentration was 10.4 mmol/L and creatine kinase (CK) level was 222 U/L. He was treated with rehydration only. The next day his CK level was 9300 U/L. While hospitalized, naproxen was stopped, but the patient continued his tenofovir-based regimen without any change in dosage. He was discharged from hospital three days later with a creatinine level of 97 μmol/L and a CK level of 977 U/L.

The third patient was a 53-year-old man suffering from osteoporosis, cardiovascular disease, chronic lumbar degenerative disc disease, anemia, hepatic steatosis and perone disease. His antiretroviral regimen consisted of tenofovir, didanosine (adjusted dose of 250 mg), atazanavir and ritonavir, prescribed for over one year. His CD4 count was 60 cells/mL and his VL was less than 50 copies/mL. He consumed alcohol regularly, but took no other drugs. The patient also took trimethoprim-sulfamethoxazole, temazepam, ranitidine, lorazepam, sertraline, propranolol and acetylsalicylic acid. Since the introduction of tenofovir, he had been screened regularly for nephrotoxicity. His creatinine level was stable at 95 μmol/L (creatinine clearance 75 mL/min), phophorus concentration was 0.86 mmol/L and urinary glucose concentration was 0 mmol/L. He received a prescription of indomethacin suppositories, 100 mg twice daily, for backache. One week later, he was admitted to hospital for deteriorated general condition. On admission, his creatinine level was 1454 μmol/L, urea concentration was 46.3 mmol/L, potassium concentration was 5.5 mmol/L, phosphorus concentration was 1.68 mmol/L, urinary glucose concentration was 3 mmol/L and proteinuria level was 5 g/L. All medications were stopped. Over the next few weeks, he required dialysis two or three times a week. Between each dialysis, his creatinine level increased to 700 μmol/L. A diagnosis of irreversible acute tubular necrosis secondary to NSAID was made. The patient expressed a wish to stop dialysis and discontinue antiretrovirals. He continued his follow-up on an outpatient basis and died 12 months later.

The fourth case was a 46-year-old man who had HIV for 15 years, chronic diarrhea for three years, diabetes, hypertriglyceridemia, hepatic steatosis, pancytopenia, arthrosis, epilepsy, leukocytoclastic vasculitis and herpes simplex virus. His HIV therapy consisted of saquinavir hard gel, ritonavir, didanosine (unadjusted dose of 400 mg), tenofovir and lamivudine. Before this salvage regimen, his VL was 171,401 copies/mL, his CD4 count was 10 cells/mL and his baseline creatinine level was 84 μmol/L (creatinine clearance 87 mL/min). He did not use drugs, but did drink alcohol and smoke tobacco. Other medications included atovaquone, glyburide, niacin, rosuvastatin, probenecid, fluconazole and azithromycin. He was admitted to hospital for one-week long diarrhea (four times a day) and vomiting (three times a day), but could still eat and drink. On admission, his creatinine level was 346 μmol/L and tenofovir was stopped. A diagnosis of acute renal failure secondary to dehydration was made, in addition to chronic renal failure secondary to tenofovir. His bicarbonate and phosphorus levels were normal, and he had no proteinuria or glucosuria. Fanconi, nephritic or nephrotic syndromes were not found. Renal function improved with rehydration, and the patient was discharged (creatinine level 168 μmol/L) with reference to his physician to choose other antiretrovirals.

Our patients had acute renal failure with elevated creatinine levels, and elevated urea and potassium concentrations, without hypophosphoremia or glucosuria. Each of our four cases had multiple risk factors for renal failure. In the first case, the use of diuretics, the baseline renal status, the hepatic condition (with possible hepatorenal syndrome) and the use of tenofovir might have predisposed the patient to NSAID-induced renal failure. In the second and third cases, NSAIDs were probably the triggering agent as well, but the patients had fewer risk factors for renal insufficiency. In the fourth case, diabetes and the progressively increasing creatinine secondary to tenofovir might have been the risk factors for acute renal failure caused by dehydration. Also, three of the four patients took didanosine in combination with tenofovir, which may have predisposed them to cellular toxicities.

Four patients treated with tenofovir developed acute renal failure without Fanconi syndrome. The cumulative use of diuretics, didanosine, NSAIDs, tenofovir and other underlying diseases altering kidney function, such as diabetes or liver cirrhosis, may have played a role in these cases. Larger cohort studies are required to better define the nature and risk of acute renal failure in HIV-positive patients who are treated with tenofovir and NSAIDs. Nonetheless, based on this case series, we feel it prudent to recommend that the combination of tenofovir and NSAIDs be used with extreme caution, especially in HIV-infected patients who have other risk factors for renal dysfunction.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2610281/ 

I would have to encourage said caution to all HIV patients reading this, or to anyone who knows one, to be aware of the link between Naprosyn and Truvada given the potential damage it can do. This information should surely be available to all GP's who are the ones prescribing Naprosyn.

No dialysis today!

A very good feeling. Would have been there today if going 3x's a week, but now not there until Sat. Feeling fine, no impending disaster it appears. I guess this is progress.

Mixed news

They are reducing the dialysis to only twice a week now (Tues and Sat) with the idea that the kidneys will realise they have to do something instead of relying on the hospital. Reducing the steroid medication a little that helps the immune system, and going to do another kidney biopsy in a few days to get a better idea of their current condition. Am putting weight back on, and I've finally convinced them that taking me down to 58 kilos is just too light and they've agreed on 63 as a better ideal weight. Am feeling a bit nervous about going all the way to Sat now before the next dialysis but also confident it should be OK. It is after all only one more day than Sat-Tues. 

I asked straight out what sort of time we're looking at here to keep work informed. It was pretty much the usual answer in that it's just too hard to say. The doc said he'd seen people take up to 2 or 3 months on dialysis recovering from a thing like this (*sigh*) especially when pneumonia was involved, as with me the second hospital stay, as that can do further damage.

Overall slow progress but going in the right direction. I still am in a rather precarious position would have to say. They are very limited as to what they can give me simply due to the kidney condition. Not even on any HIV pills at the moment, and had to convince them I needed the anti-depressants. Found out when I was in ICU my CD4 count dropped right down to only 450, the lowest it's ever been even counting the early stages of HIV infection. That's a big drop, given that when the viral load was undetectable the CD4 count was in the healthy range, one reading being 790 even. 

So HIV wise I'm back to square one, with all that's involved with that. Body was dealing with the virus quite well, but at the expense of everything else; struggling with minor infections and me feeling generally unhealthy. I guess that's the purpose of the steroid meds they're giving me for my immune system. Didn't take those in the past. Prednisolone 25mg a day.

Simon has gone back to the country. We had a warm goodbye when he left. He has made it clear on this stay that whatever we have together it's about more than just sex. He was very particular to make it known that he wanted to be with me and help during this bad time, and he wasn't here simply for my... um... well.....   In fact this visit we didn't even have sex. To be honest it was absolutely the last thing on my mind and the last thing I felt like doing. To me there's no point in doing it if you don't feel like it. And being fresh out of hospital after a near death experience and recovering from lack of oxygen to the head isn't exactly conducive to a fuck. Lots of guys wouldn't have understood that but he did, and let me know he did. This is certainly another aspect of the Peter/Simon thing, and I'd estimate a strengthening of whatever it is we have together. To have someone care for you like that is a rarity in this life. This was the best of the pics I took when he dragged me away from the four walls here to get out, much to my lack of enthusiasm at the time. It's just down the road at Botany Bay, this on a day when the sun came out. 

Still waiting for the Sickness Benefit to come through. The mega-form I filled out is currently being processed in some faceless Centrelink office in Canberra. It's been since the 20th of last month that I lodged the mega-form at the local Centrelink office down the road here. The lady there went through the mega-form to make sure it was all in order, and all the required info was there, before giving it the stamp of approval (literally) and sending it off to the faceless Canberra office. I then get home from dialysis yesterday only to find a letter in the mail from said faceless office, telling me there were 3 questions I'd not answered and I had to answer them and get the copies back to faceless office for my Benefit to be processed; enclosed were photocopies of the pages involved with a place for me to sign etc. WTF? I proceeded to the local Centrelink office in a state of fuming anger. It was supposed to take a max of 21 days to get processed and it had already been 11. After waiting 45 minutes in the General Inquiries line, I finally got to the counter and made my displeasure known. The General Inquiries lady couldn't believe it either and was very apologetic, which stopped me from swearing at her at least. She took the signed photocopies which had to be sent to the Canberra faceless office from there, so I don't know how much longer this will all take. The only consolation is that they reckon I will be back-paid to the 20th of last month when I lodged the forms. *sheesh*