Life, please... no more

[Kahlia1981]

I only got home from hospital around two hours ago after they were completely useless. Time after time they tested the same things over and over and they were uninclined to do anything especially helpful except an MRI. Because we were privy to the last MRI we knew that there were significant changes from the last - including early nerve rootof compression. So the system really sucks. Having to deal with incontinence is bad enough.

[Kahlia1981]

My husband made an appointment for me on the 4th to see our GP after we had both taken some time to calm down. Part of the reason was because the hospital rang to tell me that I had a UTI (which potentially occurred from the insertion or removal of the catheter) and the other was because I was/am experiencing what is known in the medical profession as "saddle anesthesia". To break this down it basically means numbness or decreased sensation or sensitivity in the areas your body would be touching the saddle if you were riding a horse. My GP told me straight out that my cauda equina (a bundle of spinal nerves and spinal nerve roots, consisting of the second through fifth lumbar nerve pairs, the first through fifth sacral nerve pairs, and the coccygeal nerve) has become compromised and we could potentially be facing cauda equina syndrome which needs fast action to prevent leg paralysis and would mean the incontinence I'm currently experiencing would be permanent as well.

Honestly I'm of two minds about this and really not sure how I should feel. Part of me just wants to disappear from this world. Another part wants me to find a place where I can just cry all day long. I'm scared of what this diagnosis means and what could potentially be a huge change for the rest of my life. There is anger that this wasn't picked up whilst I was in hospital and treatment given. Despair is very strong and it is getting harder to avoid believing the worst is going to happen. Even through that all I am trying to be positive but I feel a bit like I'm being sucked into this dark place from which I will never emerge again.

Both the pain in my back and the extreme sciatica-like pain I've been getting in my legs could be caused by this syndrome and there's no doubt that my reflexes in my ankles and knees are non-existent. Doctor after doctor tested my reflexes everywhere on my legs and were becoming extremely frustrated when they didn't do what they were supposed to. Throughout the testing I had my eyes closed and I was talking to my husband and didn't move at all when they attacked my feet with the sharp end of the reflex stick but they weren't convinced. As far as I'm aware you cannot shut off your reflexes if you aren't playing close attention to them, if at all but they would rather believe the tests were compromised than accept the truth.

My life has changed terribly since that quick hospital admission but I'm unable to do anything about it. I really don't know what to do, what to think, how to feel, if I should feel anything or if I'm worth anything at all. Such a jumbled mess, what reasons can I find to try to put all the puzzle pieces back where they belong and would it even be worth it. Probably I'll never get the answers to those questions but for now I just want to cry.

On a positive note, my dogs are being very loving and protective as they realise mummy isn't so good and daddy is really struggling to hold onto his own sanity due to his anger at mummy's mistreatment (once again) by the local hospital. Even on a bad day a cuddle from the dogs doesn't go astray. *sigh*

[Eir]

I'll be up next week. I'll try to catch up with you after uni.
Dogs are great therapy. I love mine to bits. Sorry to hear about the prognosis. Hopefully now you can get appropriate treatment.

[Kahlia1981]

I keep coming to type something on here but cannot find the word to express what I really want to say. My life is going as well as can be expected when you have a degenerative spinal condition but at least we don't have to panic as a lot of the anaesthesia in the saddle region is fading as the swelling comes down and takes the pressure off my cauda equina. Tomorrow I'll have the last piece of paperwork to prove my eligibility and need for the special forearm walker and that's another bit of the puzzle then in the "decision makers" hands.

Hopefully all the applications will be approved as I received a quote for the work in our bathroom and the front door ramp and there's no way we could cover it. We already know that we can't afford to replace the wheelchair I am currently sitting in but there's nothing we can do about that either. Right now I think we cannot do anything but continue treading water until either my condition improves (thinking positively), declines or surgery is offered as an option.

I've started writing a story and am enjoying getting back into it. There's no way that I'll ever be writing the next best seller but I just enjoy the time when I have a pen in hand and it is great for my creativity. When the ideas start flowing they just start flowing!

For now I keep treading water...

[Kahlia1981]

Things haven't been so good lately despite the front that I've been putting on whenever there's someone around. My pain has escalated, especially over the last couple of days. Just waking up in the morning has been extremely painful. Hubby even had to help me sit up today because I couldn't move anything below my waist due to the pain. From what I can remember that is the second time in two days that hubby had to "step in" and assist me to get out of bed, and transferring from the wheelchair to the toilet and so forth has become much more difficult.

Yesterday I had a nerve conduction study and the verbal results were contradictory to say the least. On my left leg he obviously wasn't getting the results that he wanted because he kept going on the same spot for quite some time. He also shoved a needle in my leg and the only reason I know that is because he told me that's what he was going to do. I couldn't feel a thing. At one point he told me to grit my teeth, then to breathe, then to grit my teeth again. I'm guessing that what he was doing at that point was supposed to hurt but aside from some pressure there wasn't really anything.

Next week is orientation week for semester two at my uni so I've organised my textbook to be sent to me and have started setting up for the subjects. That means I really have to get my arse in gear but I am struggling to find a reason why. Mind you, I'm intending to put in another equity scholarship application and this time take the $1000 for groceries because my textbooks should be covered by the book bursary. Before first semester I'll be applying for heaps of scholarships including another book bursary to assist with the cost of studying.

My mood just keeps dropping for a lot of reasons but us having been trying (not very well to be honest) to have a baby for three years and failing isn't helping. Every time I see a post of Facebook announcing a pregnancy or the birth of a child my mood just drops. Perhaps I'm not meant to have a child, but why would I appear fertile on all the tests? If we don't have luck soon we'll have to look at going up a step and do some form of IVF. We just don't have the money though so it will be extremely difficult but, that may be what we need to face. Since hubby already has two kids it must be my fault.

One more thing I screwed up in this life, and there's no way that I can fix it. Maybe it would be better if I just gave up, on everything. *sigh*

[Kahlia1981]

This afternoon I was extremely productive printing off all of the documentation and paperwork required for my two scholarship applications, filling out everything but the budget and wrote drafts of the personal statements. Only two documents need to be signed by a JP so on Monday, on the way to see the doctor, we are going to get that done as well as organising the express post envelopes. Because it needs a staple in the top left hand side we may need to visit Officeworks to get them stapled. Since we have to go there to get my lecture notes and tutorial questions bound anyway there's no issue. Then I just have to stop by a post box on the way home.

Four weeks ago my husband and I met up with an old friend in a shopping center. We reconnected on FB and met up on Monday, which was a public holiday (Show Day) here. Her daughter actually remembered me and I was very surprised by that because we haven't seen her for about four, maybe five, years. She's the same age as my nieces and I really think they would get along very well - especially considering they both play the flute. It was funny in a way because we stayed at her place (since she is in a power wheelchair and need someone to drive her places) and were impressed with the unit. Obviously it was completely wheelchair accessible with appropriate railings and equipment, but the surprising thing was that it was a building owned by the Queensland Government. My husband and I are thinking that we will have to go through the Department of Housing to get our next place and we hope that it is equally as accessible, but we need at least two bedroom spaces.

My mood just keeps dropping and I feel exhausted pretty much all the time, but the latter isn't that surprising, after all it takes me much more energy to do something simple - like stand - than it used to. Every transfer uses lots of energy both for me and for my husband and is a risk. If anything was to go wrong either of us may be hurt, and quite badly too. Just putting shoes on is a difficult task. While it is possible that my mood drops are being caused by too much stress, the extra pain and energy cost of every movement, or the fact that I am overdue for my ECT treatment, my money is on the last one. Now though no hospital will perform the ECT treatment on me until they have definite and positive proof that the slight seizure will not do further damage to my spine. Since I need assistance to complete every single task the hospital's aren't happy to take me as an inpatient as well, I guess I just need too much care for a psychiatric hospital.

Desperately hoping that I get a break from either wanting to cry, hurt myself or do something more permanent. Thankfully I have both my husband and a quick call on my phone to Lifeline. *sigh*

[Eir]

Well done for productiveness!!
I think I'll look into some things for you, there's got to be more help you can access.
I'll be up your way for 6 weeks after the 17th. Just waiting on a roster before I can make some more concrete plans. Really hoping to meet you in real life this time. Maybe I can also help you out a bit or something.
*safe hugs* I'm glad that you have those supports.
Thinking of you
Annie

[Kahlia1981]

So darn exhausted right now. I had a timed (90 minute) quiz and I was so worried about it but I know I will have scored between 29-30/30. Time ways I didn't even come close to using what was allotted. For me to get up to date with my uni work I need to watch about 10 videos and get into the first assignment for my Business subject - all whilst waiting for the specifications for my second assignment for my IT subject to be released. Not to mention at least two chapters worth of reading. But, that's what you get when you sign up to study.

On Monday I went to the choral group only partly for the singing but mostly because the hall was being renamed to honour two life members. Due to my height when I am in the wheelchair I had a seat right at the front, which felt really weird because I'm normally towards the back. We actually had a bit of a party/celebration with heaps of food - I'm kind of glad that I didn't have to deal with the leftovers, though it did mean that the guys working on the set in the warehouse were able to get a feed.

I managed to get through my horror anniversary on Monday without too many issues, maybe because there was just so much else going on. Throwing myself into my uni work is keeping me going right now, but I don't know how long that will be the case for. Knowing that we still cannot get me treatment makes things more difficult. Having said that, the friend that we caught up with has become active in our lives and I think that it is helping both of us. One of her carers actually told me straight out that Missy is much better - more active, more happy - since we have come back into her life. She has even started getting out and doing stuff, and I really do enjoy being in her presence.

Pain is probably the biggest killer for me right now, although waiting on the new wheelchair and Rollator, the upcoming appointment with the surgeon and the appointment with the rehabilitation unit, are coming a close second. I also have an appointment with the "Neuro-physio long wait clinic". Wow... Just put it out there that I will be waiting for forever until someone actually sees me. Kind of interesting since the last time I went to that clinic the physio completely cleared me stating that I was perfectly fine - except for pain. Now I am going to wheel in there and watch them trying to work out how I went from fine to in a wheelchair, and why I have been in the chair for five months. Could be incredibly interesting...

Because my husband is currently my sole carer he is under a lot of stress. We have been trying to find both funding for a drop-in support worker (or more than one on a shift rotation) and are badly in need of assistance. Attempting to work out what, exactly, is out there is becoming useless and we think we are going to have to get help from one of the organisations that are around. I have made some inroads with House With No Steps but I am not expecting miracles. Getting my wheelchair (now!) would be great but at least I know that it wasn't thrown back immediately.

So I guess we just wait and get my arse back into study.

[Kahlia1981]

This month is turning out to be really busy. Alongside all the university work I'm going to be fitting in choir rehearsal (optional but gives me a reason to leave the house other than for something medical), an appointment with Centrelink and 5+ medical appointments. One for the neuro-physio long wait clinic, one with the neurosurgeon, one with the physiotherapist, one with the rehabilitation clinic and a psychiatrist appointment, just to name a few. It is going to be a stressful time but I'll get through it. Hopefully I'll manage to keep up with everything - including keeping track of my calendar.

Today the OT from Blue Care called to tell me that my application for a wheelchair has been approved and that we should get a letter from them shortly. Obviously the chair still needs to be ordered by it means that it shouldn't take too long to get here. Can you tell I am extremely excited and really wish that this wait could be over soon. My new wheelchair is going to be much more comfortable than this one simply because of the size and style, not to mention that I might actually be able to see over shop counters because it is much higher than the current chair.

My husband has decided to start doing an online diploma of counselling, starting in early September. He hasn't really had experience with external studies before but I think he will make it - with a little bit of help. One thing he will have to work on is some kind of schedule to ensure that he gets the work done on time. Before he can start though we need to upgrade his computer (or technically my Dell laptop that I received as an Equity scholarship) because it cannot even run word with anything else. Fingers crossed though that it works for him as he really wants to help people and, to be perfectly honest, the extra income that he could make (before our disability pensions are reduced) would come in really handy.

So much uni work to do, lectures to watch, chapters to read, workshops to complete, assignments to start and finish..... *sigh*

[m0nk]

*HUUUUUG*

[Kahlia1981]

Quite a lot has happened since I last found time to post in here, so some things I am going to skim over.

As I wrote before, the OT dealing with my MASS/CAEATI application for the wheelchair (and forearm walker) rang on August 04 stating that the wheelchair application had been successful. She told me that I should expect a letter soon from the appropriate government department. When I hadn't heard a peep by August 24th I became concerned and attempted to get in touch with the OT. Eventually I had to make a complaint about her because she didn't respond to messages, return phone calls, listen to voicemail, etc. I got in touch with the department immediately afterwards and finally, on the 26th was informed that everything had definitely been approved and that the worker I was talking with, who was managing my case, had marked it with an "urgent" stamp and was walking it to the next step of its processing.

On September 12 I received the letter, penned on the 1st of September, giving the phone number for the supplier who would be in charge of ordering my wheelchair. Because it was still within business hours I immediately rang the supplier who took down my details and told me that they would call when the paperwork had arrived on their end, but to call back in two weeks if they hadn't called me.

Two weeks go by and I allow until the Friday before I called them again. So, on September 30 I called again, but spoke to someone different. He informed me to call MASS/CAEATI who were unable to assist. On the 10th of October I started to chase again but they still did not have the paperwork. They didn't stop there though. The worker actually rang down to Brisbane who informed them that, whilst the application and equipment had been approved, they had a backlog and weren't interested in relieving it.

At this point I had two major theories and several minor ones regarding why they weren't just processing the easy cases. These workers all lose their jobs in January when the NDIS (National Disability Insurance Scheme) goes fully live. From that I can deduce the following. 1. The workers were put off by the fact that they were soon to become redundant and were refusing to do any actual work. 2. They were allowing the work to back up in order to be able to turn to the government and say "we still have all this work to do" with the idea that they will still have a job until the work is done (or forever considering they weren't doing it in the first place). These two theories are not mutually exclusive and were not meant to represent all the workers in that particular department, but that is the way I was seeing all this at the time - considering I had been informed of the approval in August, but not formally until September, and then the letter to the supplier was "stuck in the backlog".

Late on October 21st I was called by the supplier to hear that my paperwork had finally arrived. At that point I was informed that on the Monday (24th October) my wheelchair and cushion would be ordered and I would then have four to six weeks to wait for the delivery. Since you can all do the mathematics and look at calendars I won't bother telling you how far along that we are, but every day it is coming closer.

Seems a bit absurd actually. The application went in around June or July and, here we are still waiting for the chair in November. And that is/was how long an urgent application takes... How are the NDIA (National Disability Insurance Agency) going to go on that front? I really don't think I want to know, but at this point I may have to find out.

Physically things haven't been going so well, but I guess we knew that would happen.

I saw my neurosurgeon on August 17 and he was unhappy that I was sitting in front of him both in a wheelchair and with the significant degradation to my spinal vertebrae, joints and discs at my age. He then sought copies of scans and assessments performed in the local public hospital before our next visit on October 19. Additionally he believed that visiting the rehabilitation unit at the local hospital would prove interesting. The fee for the first visit (and subsequent visits) is/was actually affordable - unlike the neurosurgeon from Brisbane.

When we saw him in October he arranged for me to have a cortisone injection into my spine in an attempt to assist with pain relief. The injection was completed on November 1st (which is apparently Melbourne Cup day if that means anything to anyone - just don't ask me) and, aside from increasing the pain and stopping me sleeping or lying on my back for three days, there hasn't been any noticeable effect. The injection cost nearly $1,000 and it's extremely expensive even with both the Medicare and private health insurance rebate we couldn't afford to do this frequently (or possibly ever again). Our next appointment is December 21st, and there's a lot that will have happened before then.

Before following the rehabilitation through I'll quickly bring the GP trouble up now. Our GP left for a vacation on September 28th with enough scripts to get us through for six weeks, and then we found out that he had left the practice. Since he has already ditched us to change practices before we are definitely not going to screw around, following him. This means we had to find a new GP. Because of the circumstances we rang the nearest GP office and made inquiries about a GP who deals with complicated cases. We saw the new doctor on the 10th and have found someone who is prepared to take us on - first try. One of the benefits of stating outright that you are complicated I guess.

I'm going to post this now and continue when the cleaner has left.

[Kahlia1981]

On August 23rd I had two appointments at the public hospital, my psychiatrist and the rehabilitation unit. During the rehabilitation interview/meeting we had the typically normal conversations about my situation and were left completely unsure of what they were planning. From it I received a referral to the Pain Management team (against my will), a women's health clinic (I have no idea why) and an ultrasound, for the women's health clinic. It took quite a while for another appointment letter to come through and, hopefully, we'll get to see what they have planned on the 22nd of November.

From those things, the ultrasound was done and we (against my better judgement) saw the pain management clinic on Monday (14th November). It went as badly as I suspected with the "doctor" trying to convince me that it was my pain killing medication that was causing my pain and not my injury/disability. She also can see no reason for me not to be standing or walking, despite me telling her straight out that every time I stand I need to be supported or I will fall flat on my face. She wants me to see a psychologist who I believe will be attempting to "convert" me to her way of thinking. Really not looking forward to that, or to ever seeing this so-called doctor again. Complete waste of time, and hubby didn't even steal several packets of cookies from them. So disappointed.

The last thing, health-wise, was the interview and planning session we/I had with the NDIS. We've already been approved and received all the necessary paperwork to set things up for the next 12 months today. I'm honestly glad that all that went through so quickly for it means that we can get a carer in for more than two hours twice a week, and my husband can get some resting time. Not to mention assistance with ordering the forearm walker that may be the difference between me ever getting back on my feet or not.

Leaving health stuff totally now, the concert for the singing group that I am part of had its end of year concert on November 6th. We managed to get the lighting board working with the help of my father two days prior to the concert. Our problem there was that we only had one DMX 5-pin cable and that connected the lighting window to the dimmer rack, but we needed one to allow me to work the board from side stage. Despite ordering two cables we knew we might not get them in town so my father actually made the cable that we needed. So, we got the board working but the board we are using doesn't allow you to hold states - in other words, once the power is switched off to the board anything saved on it vanishes. Not so much of a problem for the concert but we organised the two states and saved them, with plenty of time to spare. Right as the concert was about to begin power was cut to the board (we don't know how). Hubby came and grabbed me from the stage and together we managed to get power back on the board and a rough image of one of the lighting states up and playable. For the rest of the performance (or the whole darn performance) we were constantly stressed fearing that the board would cut itself out again. People were complaining about the smell (from the heat) the lights were putting out, but we didn't have time to organise proper levels from the lights. Getting through that concert nearly killed us - at least those who were aware of what happened. This may allow the committee to listen when we request a new lighting board for the society itself.

Beginning on the 9th of November we went into final rehearsal mode for a local production of The Vicar of Dibley. Since we are using the same lighting board I'm incredibly anxious about the board crashing again, although it has only done it once in rehearsal and not at all for the three performances that we have had so far. My other issue is that, for this show, I need four different states that I frequently move between. Luckily I can use the two "saved" or "grabbed" channels for two of them, and then put one state on "preset 1" and the other on "preset 2". While that works perfectly when the lighting board is on it means that I have to reset three of them whenever I turn the board on. One of the states gets sacrificed so that I can warm up the lights (by turning them all up to full for about two minutes during which I check that the lamps are still working and the gels aren't covered in holes) and then I deliberately create and set the two states that are grabbed before returning the first preset (preset 1) with the appropriate states. I thought carefully about this before setting it up this way in case of power failing. The two I use the most often are on the presets which, because they aren't saved, are always accessible. If I had to recreate the grabbed states I would simply alter one of the presets to match the required state and transfer it to the saved one once it was lighting the stage before bringing the preset back to its normal state. I'm sure that you can fill in the rest from here and this design (?) means that, apart from the initial blackout, the lights would appear unchanged.

Sunday afternoon's performance was especially interesting because one of the cast had a nose bleed that effectively stopped the show. While one of the cast member tried to entertain the audience with a sing-along it took about five minutes before the director instructed them to have an early afternoon tea - despite knowing that the original interval was still required. So they got an extra free drink, an early cup of tea with their cupcake and plenty of time to go to the bathroom and talk. Luckily we knew that this particular cast member was more-than-usually likely to have a nose bleed we had a towel and bowl side stage which we got to him the second he came running off. The poor fellow had to use a tampon to stop the bleeding and returned to the show with paper towel shoved up his nose. Funnily enough we had a nurse watching the show and she raced around the back to offer her assistance the moment he went off stage - possibly beforehand when she saw he had his handkerchief held against his nose. Definitely made for a more interesting performance...

Monday also saw the university semester begin again so I've been trying to stay on top of things. Not that I'm overly interested in the subject matter, but these are the last first year subjects I have left, and I'll be very happy when they are over and done with. Friday is still ominously looming over my shoulder too, as my maths and programming results will be released. Again, not something I'm really looking forward to but am far more nervous about. Although my husband keeps telling me that there is nothing to be worried/stressed about. How I wish I could believe him. *sigh*

[Kahlia1981]

So stressed right now and my mood is through the floor. I'm barely hanging on at this point and have no idea how I am going to get through this. In December we'll be asking the neurosurgeon for a letter stating I am physically safe to have ECT, depending of course on what he wants/intends to do. There have been a large number of days when I've just wanted to sleep (or at least lie in bed all day) or sat here working out how to end my life with objects, etc that we have around the home. Right now I'm completely overwhelmed and don't know why I'm even alive. *sigh*

[Kahlia1981]

My university results have now arrived and it has set of a complete breakdown and crisis. My mathematics result was a HD but my programming was a Credit. To me that is the equivalent of a fail. Now I'm beating myself up over it because I know that I must have failed the exam, or almost failed the exam in order to drop from 99% to less than 75% (when you count the correct percentage for the exam). Given the situation I was in around exam time I should have applied for special consideration but I wasn't in a position where I could. Having said all that, because I was butting head with the lecturer throughout the semester for providing a technically correct answer but not the way she wanted it done, my husband has suggested that I may have been marked down on answers that I got technically correct but didn't do exactly the way that they expected. Considering we are always told that there are many ways to arrive at the same answer, but get in trouble when our answer doesn't match exactly, the irony is hilarious.

Getting a Credit here and now has had a couple of effects on my study, including seeing me drop out of the current semester (semester three for anyone interested/unsure) and begin researching my options. I am going to attempt to get a copy of my marked exam in order to see where I went wrong, which would ultimately prove whether I failed on my own or was helped by the lecturer. Not that there is anything that can be done if that is the case. Part of the investigation has included checking for courses with other universities and, obviously, seeking answers as to my failure. Breaking down in tears and being prepared to die were side-effects that I didn't need, and I still don't need this right now.

The second week of Dibley ended yesterday with the worst show of the season, which just happened to be the one that they videoed. Mind you, on Friday night an audience member (who just happens to be the stage manager for the local theatre) recorded the first act of the show. Hubby was in the lighting window, saw her and radioed me. I got someone to tell my father and he investigated. Before the second act began an announcement was made to inform the audience that they could not take photo of video footage and she pouted and sulked - almost like a child having a tantrum when you stop them from eating crap off the floor. For anyone unaware, when a company performs a show they have strong copyright laws and restrictions. Generally the copyright just ensures that video isn't taken and shared everywhere, but if someone does video a show and, say, uploads it to YouTube, then the copyright people will turn on the organisation, not the individual that posted the clip. Really, all I can say about that show is thank goodness it's over. *sigh*

Today has not been crash hot... My back has been extremely painful all day and I had a lovely 45 minute bout of the sciatica like pain down the back of my left leg. Not to mention the eye twitches and extra pain from lots of bumps all over the road (and JC University campus). I just want to crash out right now and stop being in pain, but it's not that simple. *sigh* At least my husband did a quick service on my wheelchair and it isn't so noisy now...

So over today... and 2016..... and everything else.

[Eir]

2016 has sucked indeed.
I'm honestly amazed at your grades, especially with everything going on. Mine have plummeted over the past 18 months due to stress related motivation issues. I'm currently chanting 'P's get degrees' over and over. I won't have my final result until the 6th. Damn JCU nursing results. I just have to pass the exam. Passed the other subject.
Some lecturers just suck. Sounds like you have a plan to find out what went wrong. That's good.
You are still an inspiration for me.

[Kahlia1981]

Annie: Sorry for not replying earlier, but things have been chaotic.

My, a lot has changed since I last wrote in here. On December 2nd my GP decided to change my pain medications, on the advice of the persistent pain management clinic. We were to go from a short acting pain relief to a long acting one. The next morning I awoke in my normal morning agony and couldn't take the new tablet (which wasn't going to kick in for 3+ days anyway) until I could sit up - about five hours after waking. My transfers from the wheelchair to anything became dangerous, both for me and my husband because my left leg became completely dead. Long story short, we rang an ambulance expecting that they'd give pain relief and send me home. Even longer story short, I'm still in hospital and will be for another two or three weeks.

I actually got lucky in one sense but to understand why I have to, kind of, write a timeline. December 3rd I went from Emergency (Fast Track) to the Short Stay unit overnight. The next day I got moved to the Rehabilitation unit for about ten days and since then I've been in the Sub-Acute Care unit (or SACU). SACU has two sides, the Geriatric and the Rehabilitation. It's a lot nicer than the main hospital with a communal dining room, physio and OT gyms and even a psychologist. Funnily enough, given my track record with psychologists, I can actually talk to him. The head doctor of the rehab team also listens to the patients and tries hard to help, even when he's out of his depth/specialty.

When I went into the rehabilitation unit I began some simple physio to try and stretch my muscles and build strength, given that I hadn't walked in so long. One of the physiotherapists (C) was responsible for me having a breakdown that could have been easily avoided by her checking facts. Just in case you are interested she told me I was being discharged when I knew I was waiting for a bed in SACU and also knew I couldn't use the bathroom at home. Thankfully my breakdown was simply to ring hubby with a "get here now" message, disappearing across the road and crying while I had a few cigarettes. Oh, and asking to see the social worker. Not only did my husband come up as quick as he could but he brought my mother along. The social worker agreed to speak on our behalf and the next day I got moved here with only 20 minutes notice.

Because the physio they originally put me with (G) when I came over here left they arranged for others to come over. The first day after G left I was given L who told me I would be getting C for the rest of the week. Given my previous experience I was anxious and just happened to be seeing the psychologist for the first time. He could hear (and see) how much it was stressing me out so he spoke to L who agreed to take me on and is still working with me. She (L) hasn't given up on me, and still believes that I will be able to walk out of here on the Walker, and possibly be able to walk unaided.

My biggest problem (aside from pain and pain management) is my left leg. Put simply, my brain doesn't know it exists. It's very scary trying to put weight through it and I'm looking down a lot to try and force my brain to believe it can hold me up. Despite me doing exercises to improve my balance our earlier attempts at walking were railroaded for a month by two things: my shoulder and a fall. Dislocating my shoulder during a walking attempt was bad/painful enough but the fall onto an outstretched right hand really didn't help. After that I had real trouble with our walking attempts, until this week when we tried something different. Now I just have to get my left leg to behave.

Things haven't been all smooth sailing in my mood either. Right now I'm really hurting at a couple of decisions my husband has made, basically to fly to Germany and to visit his youngest daughter for her birthday without me. Before that a conversation was enough to completely bring me down. Apparently I seriously scared people because I shut myself down. Physios, OTS, doctors, nurses... it seemed like everyone noticed. I had massive changes in appetite as well and that hasn't really been resolved.

All the paperwork for funding to get a temporary bathroom renovation through the NDIS has been submitted but we could be held up a little by having to change our plan to include renovations. We also need to get equipment from NDIS funding and all that's been submitted as well. Hopefully it won't take long. I'm over being in hospital and just want to go home. *sigh*

[Eir]

*hugs*
Hope things work out. Meant to reply earlier but having my own breakdown making it hard to know what to say.
You're amazingly strong, surviving this. I hope the rehab team manage to sort things out. Have they thought about bracing the joints? Or maybe compression stocking to increase your awareness of the limb? I don't know much about it, but they are just thoughts that have crossed my mind when thinking about it.

[Kahlia1981]

Annie: Thanks. I know how hard it can be to offer help and support to someone else when you are neck deep in problems of your own. I really appreciate it. With regards to potential solutions, we are using an AFO to turn three joints into one and my physio finds it easier. The big problem for us is the swing phase. I'm wearing compression stockings already because of the oedema from lack of movement. I'm even using my hands as focus points to take weight on my left leg but can't find anything to help with the swing phase. *hugs*

The new method of attempting to walk has been a success, for the most part. By using a wall instead of the rollator we eliminated the problems with the right arm. It also means the physio controlling my left leg hasn't run herself into obstacles (usually chairs and walls). After a few days we were able to move off the wall and then to reduce the number of people assisting. Now we have one physio (L) who moves my left leg and one AHA (Allied Health Assistant) /physio to help with my balance. I've been working on my standing balance by moving cards on the wall and it's also helping with transfers. Last week we tried an AFO (a brace that goes into my shoe and goes from the ball of my foot to just below the back of my knee), which was the wrong side for me, but L found it easier so organised a script for a standard "large" AFO. She rang the appropriate person who came over and fitted an AFO before she even sent the script for it over. The next day the, slightly modified, AFO was here and we started using it that afternoon. We've used it several times now and, depending on how my left leg goes, we might be getting a custom brace.

Today we saw the neurologist who, quite happily, decided that my psychiatric disorders were a reasonable explanation for my left leg. Actually he said it was a "functional" disorder which physiology couldn't provide an explanation for. He indicated that my leg should start working again if a) my psychiatric/ psychological side is good, b) my pain is controlled and c) time is allowed. Personally I believe that my psych disorders made an easy scapegoat, basically because his demeanour changed the second it was mentioned. Not too mention that he couldn't really explain it, except by stating that no one knew how it happened.

The pain part I am using as ammunition for both Dr C and pain management in order to, more suitably, deal with my pain. I'm also looking into discharging myself from the pain management team as all they have done is create pain. The only way they can be considered to be managing anything is to be managing to make my pain worse. But, soon they'll be completely out of my life. What I mean by that is that I have a potential discharge date: March 20th. I'll be having day, overnight and weekend leave before I head home though. And this next week I'll be meeting potential carers, so my husband can get respite.

Now we're thinking of taking a weekend holiday after I'm discharged, just spending some time together. God knows things haven't been easy for the last three months for us. *sigh* Getting used to being home will take a bit as well, after so long.

Hopefully my left leg decides to start playing...

[Eir]

Neurologist sounds like a dick. It's sounds like he is ignoring the MRI results, as well as nerve conduction and reflex tests. Also, what was his explanation for the pain?
Maybe I'm reading this wrong, but it pisses me off to hear your problems being passed off as psych related.
Good to hear you are making progress with the physio.
Take care hun

[Kahlia1981]

Annie: That's pretty much all he did, pass it off as psych related I mean. As I've said to the rehab psychologist it is much easier for doctors to take that approach. It also means they don't need to look closer. He recognised that I'm in pain (which he listed as a complicating factor) and that the spinal damage is there, but took on that special look of "here's a really easy answer" that doctors get when they hear psych. Meh.

Today I have to push my pain in front of the head SACS rehab doctors face and try to get him to agree to dump pain management. It definitely won't be easy but his reason for keeping them was based on the (mistaken) idea that they would be dealing with me in the community. At least that gives me a starting point. My physio will back me up as well because we've really had to slow stuff down because of it. Hell, half the nursing staff will back me up. Especially since they have to keep reheating the heat packs. Not that they help mind you... Being pain free would be really nice...

Meh. Just another day in hell...