Wednesday, June 24, 2009

Biopsy Day.....

Yup - off to get a little bit of my liver sliced out today. It shouldn't be do bad as they do it under local and it is just a tiny hole through my side. I am really looking forward to getting some answers, although I think it will take a week or so to get any firm results.

I have been working part time - mainly mornings this week and this is officially my last week at work. I will however be doing a little for them next week and being paid per hour, so that is fine. I think there is probably only about 20-30 hours more work to do over the next two weeks, mainly collating stuff and organising things to come back to the office. Once it is there they can then ring me and I will arrange collection.

My weight has jumped back up over the last week and sitting at 99.8 kgs this morning.......I think most of that is to do with TOM and the meds I am on as I would have thought that I had eatedn almost less than 3 kgs of food in the past week........the body is such a strange animal ain't it.

Okay, so to the decisions, well we have given notice at our house and are moving in with Simon's parents in two weeks. We have had to find alternative arrangements for Porsche and Riddick and although it is not finalised, we think we may have found a family who will take them both together. They already have two cats, but we think Riddick will be okay with that as he spent the first year growing up with Leeloo and hopefully by having Porsche around it will make it a bit easier. The family lost their old rottie to old age last year and they can't afford to have a new dog, but have losts of love to we will cover the price of food and a little extra for their time, love and support.

I am not going to look for work at this point, until I have discovered "wellness" and am able to actually concentrate for more than 5 mins on any on task......LOL. Once I am well hopefully the right job will be there waiting.

We have managed to sell the motorbike and have a few things on trademe as well, which hopefully get some good prices and will help us declutter as we are pretty much just taking out bedroom furniture and the computers to Si's parents. My uncle has said he might be able to store our stuff in a shed out on his farm, but we are not 100% certain if it is suitable, otherwise the storage facility is $30 a week for the size we need. Anyway, off to do some work and to have a very light breakfast.

Friday, June 19, 2009

Decisions & another hospital stay

Things were going swimmingly earlier this week, was feeling quite a bit better and knew that things were in the pipeline for me to finally get sorted and then I developed a new pain on wednesday not long after was this stabbing pain under my right ribs if I breathed in too deeply or laughed to hard or sneezed. I have had something similar before after eating and I thought nothing of it to much - usually I sleep it off. However this was alot more painful and although the panedeine worked after I took it at 8pm, when it wore off at 1am and I was in excruitating pain it was time to head to ED.

So off to hospital and I was so lucky that some of the team that I had seen the week before were on, and actually throughout the whole day on every shirt on of my either nursing staff or doctors was one of the ones that had seen me the week before, so I didn't need to explain it all 10 milion times. Anyway, so go there and they had heaps of trouble putting in a line, but eventually did. I sent Si home at 3:30 to get some sleep - I mean I was in safe hands there. I saw a heap of people and the upshot was I had an xray, and MRI and a VScan where they do a 360 degree scan of your lungs as after the Xray adn MRI were clear they started to worry that I might have a blood clot on my lungs, but that too was clear. So what does all of that mean. Well it means that it is not Gallstones, and there is nothing surgically it must be medical, so now they are going to most likely arrange a liver biopsy - I have an appointment late this afternoon with the Gastronenterology dept at the hospital to discuss the plan of attack At the moment they are leaning towards an auto immune disorder and most like auto immune liver disease.....which if treated properly with steroids should be very manageable. So now I am home and on pain killers to manage the pain, which seems to be working out okay.

One of the things that has stoodout over this last couple of weeks is just how amazing my surgeon and his team are. I have had many discussions with David and Carol regarding where I am at and the treatment options, as David said he wanted to be kept in the loop, especially as they wanted to go past my puch to do a ERCP - which he did not recommend - they changed there mind and did the MRI instead. David also encouraged me to use the counceller that they provide to help me get through some of this, as he knows how much stress I am under with the job situation as well.

On that front, we are kind of putting the job hunt on hold, although we have some major decisions to make this weekend, and some of it will depend on what answers I get today. I am going to WINZ today to see if I am eliglbe for the restart package - for people made redundant but I actually think more importanly to see if I am eligible for the sickness benefit as for the moment I cannot even look for work.......also going to talk to the gastroenterologist about it. I am then along going to budgeting advise to see if they can see a way forward.

However the reality is that on Simon's part time income only we will have to move as after the debts that we need to pay and the rent it will leave $54 for everything from petrol, food, power, phone etc........So the most likely decision this weekend will be to pretty much either sell or put everything we can into storage and go and live with Simon's parents for a little bit, untill I am either well and working again, or I find a job that I can actualy handle. The reality is even if we manage to talk to all of our creditors and get payment holidays we cannot afford to stay in this house. It also means that I will need to find a new home for the cat and the dog, although I am looking at the cost of homing them at a kennel/cattery for say 3 months, which although not really that fair on them, I can still go and visit them daily if I need to. I am pretty sure that there is no one I know locally who will be willing to take them on temporarily.


I am feeling really shit about all of the above as I kind of feel like if I hadn't dragged Simon and I up here from Wellington then maybe things would be different, but honestly, I don't know if that would have been the case, but it plays on my mind at 3 in the morning, and I am feeling really useless that I can't contribute anything at the moment. I know that I am not meant to be stressing about the other stuff but the reality is I can't hide my head under the sand either, I have to deal with it and that means facing up to some failures.

So I think friday if going to be very hard, and I think that is part of the rason I am awake at almost 4am. I have to try and go back to bed, as alot happening tomorrow, including more blood tests!!!

Monday, June 15, 2009

Taking things easy and official weight

Well trying to take things a little bit easy since being home, I am having blood tests constantly to monitor the situation and if there is too much change in either my colour (if I start turning yellow again) or level of pain then I have to go back to ED. We are awaiting and appointment for a MRI and a liver biospy, so at the moment they have said that I can work when and for how long I feel up to it, so I am going into work today after I have my blood tests - 10 different tests this morning!!!! and then I have 6 tests evrey Thursday until they have a result as to what is wrong.

When I got home I was feeling pretty good, but within 1/2 hour of having a coke zero I started getting pain in my lower right leg ankle and feet. Si had mentioned that maybe the articificial sweetner had something to do with it, and after researching some of the negative side effects it seems that all of mine have somehow been linked to it, so we are trialling a no articial sweetner week at home to see if it makes any difference. It can't hurt anyway, although I have new lumps on my legs and still sore joints and feet, so nothing amazing at the moment, although it has made me think more about having some of these things, and what is the lesser of the two evils - sugar or artifical sweetner........what's your thoughts?

As I mentioned last week I was not really sure what my weight was as so many different scales and so many different results......Well, I got home and weighed and was happy with the result, so this morning in my nighty was the official weight and I am now happy to claim the UNDER THE HUNDY and proudly shout that it is - 96.5 kgs, which means that I have lost 80.6 kgs since I started this journey. Can you imagine how difficult it would have been to deal with all of this at 177 kgs???

OH, the other cool thing about this whole episode is that I now have recent pictures of my 'pouch' or stomach for you non surgically altered........and I sent them to David (my surgeon) to take a look at and he said it looks I obviously haven't stretched it all out of shape. He has been absolutely amazing during all of this and he is leaning more towards it not being gallstones as I have no pain whatsoever.......he said it can happen, but it is extremely rare not to have any pain but to be sure he would recommend the MRI, which is what I am having, so all good.

Anyway - must rush off to the shower and get dressed, also need to make some lunch and have my protein shake to keep me going..........!!! Thanks for all your kind thoughts while I was sick in hospital and for the texts and phone calls and made it all bearable.

Friday, June 12, 2009

Back Home....but still no answers

Just a quick update to let you know I am back home now. I had a Gastroscopy this morning and good news is that my RNY pouch looks fine and dandy.......but of course they decided not to try adn go further down which is stupid, cos that is what I had been telling them.

So I am now discharged and officially an out-patient until they can figure out what is wrong with me. I still have really high liver function levels and I am still getting the bumps and lumps. I sitll have the shoulder pain, although not as bad......but the good news is that I am less yellow than I was and I can apparently work when I feel up to it, for as long as I feel up to it.

Although hte ultrasound showed a inflamed and possibly blocked bile duct, they are not going to do the ERCP (shove something down my throat with dye and find a blockage and take xray's from the inside) but they are now going to send me and appointment for an MRI and a liver Biospy, as they are now favouring towards me having auto-immune liver disease. Which somewhat explains everythng combined.....the rashed and bumps on my legs are an auto immune repsonse and I have come back positive in my bloods for some of those as well. And off course I have grossly abnormal liver function results..........SO, is that as clear as mud?

Having been to see several hospitals and depts over the last few days I have had to weigh all over the place, so it has been really intersting to see where I am one place I was as low as 93.5 kgs..........but ther scales must be weighing low as all the others have me around 96.5 - 97.1 depending on the time of if I can keep around there I will be happy for a little bit.

Anyway off to have a small snoozle before dinner!!!!



Wednesday, June 10, 2009

Quick Update

Well i got admitted to hospital and we are awaitng a special test with a camera down through my tummy which can't be done till next Monday. I have to remain in hospital till then, although I was able to get si to bring in his laptop for a quick update.

Don't have any access here unfortunately, but I am doing okay - will be bored by Monday, but the upside is that they sent me to Southern Cross to wait it out, so if anyone feels like visiting, I am at Southern Cross in Palmerston North till next Monday before I have a camera shoved down my throat.....

Basically they have found a blockage in my bile duct and they are trying to figure out what is going on and why I have the lumps on my legs. Anyway - the forced rest is welcomed.

Hope to update again over the weekend, would love to see any of you guys in the Palmy area.



Tuesday, June 9, 2009

Progress - Getting on top of things.......slowly

Not really sure what to write here, but it is 4:25 am and I can't sleep - let me tell you I have had enough sleeping for a little bit, but still I am very very tired and could sleep again all day. This flu has really knocked me around on top of my other health issues.

I foolishly went to work on Thursday after all my running around on Wednesday with the interview and the Dr's and xray etc. They said that I would not find out how the xray went till 5-7 working days so I booked in to see Dr Wednesday this week for an update and a game plan as to where to from here. So Thursday I got worse and worse as the day went by and told my workmates that unless a miracle occurred I would not be back till Monday. Friday was a no go, I just was all stuffed up in the head with a heavy cold, got some meds and over the weekend started to get a little better - I sleep really badly when I am sick, so I always go to the spare bed as then I can cough and splutter and read etc anytime of day or night and not be a nuisance.

On Saturday night developed a pain in my righter shoulder and chest and it hurt to breathe to deeply and I had a lot of trouble sleeping on both Sat and Sun nights, so I changed my appointment to the Dr's to the Monday morning instead of Wednesday in the hope that my chest xray was back....and it was. And it was clear. Thank goodness. However, he did say that he had more of my bloods come back as well, and although all of the ones nutritional had come back great, 3 of the the ones for auto-immune disorders etc had come back - (weakly positive), so although they are positive they are on the very low side of positive and as my full blood count had come back so well, he didn't think it was anything of concern, but he was going to refer me to a Rheumatologist to try and sort it out from here on in.

I had taken Si with me today and I broke down at the Dr's a couple of times as this is just getting to hard to deal with on top of the job situation not knowing where our future lies at the moment. He was very understanding but did remind me that I have to just focus on one thing and that is getting better. No point trying to find a super job that I can't do. Oh - no word back from the supermarket yet either.

So while we were at the doctors he was going to do a needle biopsy on one of my lumps but he felt that because I was so upset it was probably the last thing I needed, so he just sent me off for another blood test instead. So Si took me for that, came home had some lunch and then Dad came around for some wood as we no longer need it. Made him a cuppa and was back in bed by 2pm - slept till Si got home around 5:15pm and hence why I am probably awake at 4:39 am!!!

Got a phone call from the Dr at 5:46 pm last night saying that he had got my blood test result back and it was no wonder I was feeling like crap.......apparently my liver function is well out of range and he has got an urgent referral for me to the hospital medical registrar for first thing in the morning. He has asked them for an urgent ultrasound, which we are hoping with show that my gallbladder is in a right state......and that should hopefully explain some of the issues I have been having - not all of them, but some of them. If it is not that, then there are some other avenues that they have to consider. So hopefully that is all it is, and we will know the treatment plan by tomorrow night.

Am I scared? - Not really, just want to get this sorted out and get better. I am not sure how long this will take or if I will end up being admitted or not....will let ya know.

Oh, one more thing - although I am not so ready to claim this as I should be, and part of it feels like I have only acheived it becuase I am sick. I am sitting at 98.6 kgs yes I am under the hundy, but it kinda is bitter sweet at the moment, and I am hoping that when I am back to being well, I don't bounce back up there.

Wednesday, June 3, 2009

And the Dr said.....Why the sore throat???

Yes I have finally succumbed to Simon's horrible heavy cold and sore throat and stuffed up nose and I feel rather blah. I went to the doctors this morning armed with pen and pad ready to write stuff down as to what I had and what we were going to do about it so I could accurately relay it to everyone on here......oops I mean Simon.

Anyway, he asked how things were and I said, much the same, and he asked if I was getting new bumbs and lumps and I am......and still painful legs, ankles, in the evenings where I can hardly walk. And he shook his head and looked at the blood test results again and everything was either normal or just above normal, so nothing conclusively pointing to a reason why I have Erythema Nodosum.......which he is 100% I have, and after talking with Jenny (thanks Jenny) I am also pretty certain it is. However we cannot figure out what is causing it.

My weightloss is still stopped dead, and I spoke to my surgeon this morning to clarify if anything with my surgery could be contributing to this and could it be masking the effects of something else.....I mean rerouted plumbing certainly might change the way something presents.
But he is 99% certain that nothing from my Roux en Y will be causing any of the issues. He basically asked a few questions, then also asked me not to beat myself up about it, and that once I am 100% committed to losing the rest I will. he said of course it is so programmed in us to turn to food when we are stressed and he asked if I was still having 3 meals a day or grazing? I graze.......I suggested a food diary, he said sure........but don't condemn yourself for anything on out why you ate it, if it was habit, was it enjoyment, was it emotional.....etc and he suggested maybe talking to the counsellor or the physcologist again via phone.

Okay back to the anyway, the plan was to go and get an chest x-ray to rule out some of the other causes for Erythema Nodosum (don't google it - cos it sounds scary). Anyway, I have to go back to the Dr's next Wednesday at 8:30am to find out the results and if nothing on the chest xray then he is going to do a needle biopsy and refer me to a specialist.......

Mal-absorption? Well the blood tests revealed that I am absorbing all the vitamins and nothing there seems to be a that at least is one thing off my mind. Also my thyroid came back brilliantly normal, so it is not that maybe I just need to embrace where I am at right now with the weightloss and move on.......

Anyway, job was for a part time - approx 18 hours a week to start with but could be more. It is for checkout supervisor/checkout person and it is reasonably low paid, but it is with people, and helping people, and being in a large team where I can actually enjoy my day. I am so sick of being shut away in a back office with catty witches (not all of them) who make the day drag by and where I might only take 10 calls in a day all of which I pretty much transfer to someone else.......Also, this is just a start, it could quite easily be more hours as there always seems to be more shifts is really going back to my roots, when I used to work for my Mum in her shop, and I loved it, I knew the regulars and I can chat to anyone, anywhere, anytime. To be part of a big team that become like family.......the last time I had that was when I worked for Armourguard security.

However, I think that the women thinks that I am above working for a supermarket, and that I will want to leave after I become bored.....I think I tried to explain the above to her and that somewhere along the line, I have done what is expected of me rather than doing what makes me happy and that this is a role I really think that I would really enjoy and that I NEED to do something for me for a change and I need to get back to what makes me happy and that is actually about people more than anything else. Anyway - she said that they will let me know my Monday next week.

Anyway - I am getting cold and this has taken over an hour to write as my phone kept ringing.......take care and hugs all around