Words can't describe

How fantastic my day was yesterday.

Roz came up from Christchurch on their Southern North Island Road trip of a holiday and we caught up for a couple of hours yesterday afternoon. We arrange to meet at the mall in Palmerston North for a coffee, and it was brilliant to see her and her hubby, son and family friend.

We had such a blast and Si and Leigh (Roz's Hubby) got on really well, and in fact they were a little distracting talking so much I kept wondering what on earth they were talking about. At one point, Si mentioned to Leigh that my dad has model trains and then it was decided after a quick phone call to dad that we would go to Feilding to see the trains. It was a brilliant idea and Roz came in my car and Si went with the others. It gave me and Roz some time to catchup on our own, and when we got to Dad's we got some pics taken at his place.

We are going to catch up again next Thursday back at my Dad's for the afternoon and then hopefully Simon and I will head to Christchurch for a visit before the end of the year.

After we esorted them safely to Ashhurst so they could be on their way, we decided to go and see Harry Potter, which I really enjoyed. I think I got this and the last book a bit muddled and was surprised it was not as "dark" as I thought it would be, and it was in my opinion a lot more humourous. All in all, a fantastic day.

This morning, we had a friend from Wellington come and do brunch with us, was brilliant to see him and spend some time, and now this afternoon is going to be just chilling out at home playing WoW (World of Warcraft) and getting ready for the week ahead. Might sit outside in the sun and read for a little bit as it is a glorious Manawatu day........in fact we might go to the beach for a drive. If we do I will post some pics!!!

Hmm, not alot happening

Well my world seems really boring at the moment and not a lot happening so unfortunately you are just going to get a heap of drivel from me. Pretty much life at the moment consists of going to work, coming home, having dinner, playing WOW and then going to bed. I have not watched any telly apart from Brothers and Sisters in 3 weeks and I am so out of touch as to what is happening on Shortie Street.

Work - things are interesting there, I am not sure really about this role; - yes it is paying the bills and I am certainly not complaining about that, but I am not sure it is something that I would want to do long term as I really do need that people/customer contact. I think part of the trouble is that because it is only a 12 week assignment, they don't really want me to make any headway on anything really, and some of the role has even changed since I got here, which means that there is probably not as much for me to do as they first thought.

Home - Things are going well there, we had a couple of shaky weeks where we were trying to find our groove with fitting in with each other, but we seem to have got past some little issues. It is all heighten by the not certain about where we will be living at the end of Sept as this current house has been sold and we need to move all over again!!!

Family - Can't wait till Saturday to see Roz!!! I am super excited about this and can't wait!!!!!!!!
Enough Said......hope to have some pics of us together to post on Saturday evening.

Family again - Hardly see my Dad at all!!!!!

Health - Things are going along nicely - still having blood tests weekly, have more energy most days and hardly any joint pain anymore. I still have little lumps that show up on my legs and my skin is still a little blotchy. I also still itch like crazy all the time - especially late at night and my elbows are looking a little worse for wear. I have a big blood test scheduled for either next week or the week after and it will be interesting to see what the Dr wants to do with my drugs.......I am kinda scared to experiment with it all.......cos I am feeling quite good at the moment, and honestly if this is the best I got, I wouldn't complain one iota!!!!

Weight - well that is up and I as I said, I know it is because of the steroids (mostly) and honestly if this is the best it got I would accept it and be happy. I know that I have skin issues and I know that they will most likely never be resolved as I can't justify spending that much money on removing it.....unless I win lotto. It is not a big deal to me......(most of the time).

So that is pretty much where I am at on a whole heap of things, as I said - nothing really new, and it seems almost like a waste of a post - but hey.....here it is.

Busy Week

Well it certainly has been a busy week and health wise I have coped really well - much better than I thought I would. Most people would have not clue that I am not at 100% now, apart from a couple of bad skin spots, I am pretty much right. Although, if for some reason I forget to take those pesky little pills I am a mess.

Weight is definitely creeping up - just over 100 kgs now, which no I am not happy about, but I have to remember that it is definitely a long way from where I was, and that this is all just part and parcel of keeping me well. Actually I bumped into an old friend of Mum's during the week and she didn't recognise me to start with, and then she kept on saying, "My, you have lost a lot of weight" and I just said , "yup, I have". It kinda made me feel more positive about the face that when I look in the mirror I see this puffy face at the moment, but other people see me differently, depending on when they last saw me and if they know I have had surgery or not.

Oh - now, you all remember when I shaved my head as it turned that funny orange/copper colour, well that is almost 10 months ago, and I have not cut it since, now some of you would have seen that it has been growing in my you tube videos, but now It is actually getting to the point that I am happy with it, and I can almost get the whole lot up!!!! I saw my brother last weekend and he reckons that it makes me look heaps younger a little longer and for some reason it is heaps curlier than it used to be.

We are settling down into our living arrangements, although it is still a little hard as both couples do things there own way. It is probably heighten by the search for a new house for Si's parents as they have actually sold this one, and settlement is in about 10 weeks and they have not found one to buy as yet. So we might all be homeless soon. LOL.

Work is going well, I am enjoying what I have been doing this last week, although it is not quite as busy as I thought it would be, but I am finding work to do to relieve pressure of my workmates and I know the bulk of work is still a few weeks away, so it gives me some lead in time. This week should fly by as there is a two day meeting on with some old colleagues who I have not seen in a while, and although I am not involved directly just having people in the office seems to make the days go fast.

I am really looking forward to next weekend as we have a busy one planned. I am finally getting to see Roz, my fabulous half sister and some of the family again. We have so connected since she got in touch a few weeks ago, and she already seems to sense when I NEED a sisterly chat. We are having some tome together next Saturday for a couple of hours and then again the following Thursday I think for a quick coffee before she heads back to Christchurch....I so can't wait to see her!!! Then on the Sunday we are hopefully catching up with one of Si's friends from Wellington who is coming up this way for the weekend, so it will be one of lots of socialising.

Today is quiet, and wind is howling. Thought about going to the movies to see Harry Potter, but honestly on the last day of the school hols I think it will be far too busy, so Might just have a quiet one at home.

Monday

Started my new job today......it seems kinda odd learning something new at the moment, with everything else going on, but at least it is keeping me occupied and busy. I seem to be coping okay with the health side of things at the moment, well certianly today, and I think I should be fine over the next few weeks. I am not sure the job is really me, but I will give it my all while I am there and make the best of it......and the very least it is paying some bills and filling in a gap in my CV.

We also have to make the decision about work.......do we start looking further afield than the Manawatu, I mean Si's job at the moment is only part time/casual and there is actually no guarantee that it will go fulltime or not stop alltogether, so do we safeguard ourselves and try and to look for work in other areas as well? Could we go back to Wellington - especially if it was on one income? I am not sure about so much at the moment, and I know it seems like I am putting too much focus on this right now, but the reality is that this is a fixed term contract and it will come to an end. Should we also even consider just selling everything and going overseas? Probably not while my health is up in the air for both points.......I mean I am getting such fabulous treatment with the medical team up here.

Anyway - things to ponder and things to face as they come up. So if anyone still hears of a fabulous opportunity that will start in about 3 months......or could be held for 3 months, I am all ears!!!

Weightwise - things are stable.....I am sitting at 98.2 at the moment, so a little higher than my lowest, but still nothing to worry about. Happy at least about one thing.

Adjusting

I guess this week has been a really full on one and now I am just adjusting. I officially start my temp work assignment on Monday, it is for the Animal Health Board (I of course used to work for them in Wellington) in the Palmerston North office, and it is a short term contract of at this stage approx 12 weeks, although it might turn out to be a little longer. My official title is "Communications Advisor - Fixed Term" and will be very interesting getting to know another side of the business. I have always worked with the disease management side of the organisation whereas now it will be dealing more with those pesky possums.......thankfully not hands on though.

It is also going to be a pretty big learning curve in some aspects and I think it will be good for me to learn some more stuff, although it is a little scary at the same time, especially not knowing how things are progressing with my illness. On that front, I have been taking my pills and having my blood tests and have been feeling pretty good up until yesterday. Yesterday I got some more bumps on my legs and my joints were a little sore.....now I am not sure if that is just because we have been so busy with the moving and the cleaning, or if it is something to be expected. My bloods are looking good, they are coming down, they are still high, but definitely coming down.

I guess we are both still a bit unsettled getting used to sleeping in a new room with new noises and of course new routines which of course is part at parcel of staying with Si's parents.

Today we are thinking of going to the rock and mineral expo in Palmerston North, and I think we will also head to see Porsche as we are going to lend the lady who is looking after her our gas heater....which of course at the moment is just sitting in the storage unit.

Weight seems to be stable at the moment, hovering around 98 kgs, which doesn't seem too bad. I have been pretty slack on the water so I am not complaining, although I definitely seem a little puffy in the hands, feet and face and I know that this may be from the steroids......but I still don't like it!!!! If I can just keep it under 100kgs I will be happy for now.

Moving Day

Yup - today is the day we move to Si's parents house. The move intself should be reasonably quick, Truck should be here at 10am, and 95% of our stuff is just goingt o the storage unit 5 mins drive from here and there will be a quick stop off at Si's parents place to drop off the bed and the dresser at their house. We are doing the computers ourselves and that will be done later this afternoon/evening as I have to shoot into the "temp job" (still can't say anything as haven't signed any paperwork) for a couple of hours.

I am hoping that we can be done and dusted with the house tonight/tomorrow as we have a few things to do, cleaning, changing the drapes back to blinds and then final handover on Friday.

I am also menat to be at a meeting at the "temp job" on Thursday at 10am, so will make things a little trickier. It is actually lucky they didn't want me full time this week, it would have been far too hard adjusting to moving and a new job and the meds.

The meds seem to be going well, not getting too many side effects, although my weight is back to hovering around 100 kgs. Some of that I am sure is purely from not eating as well as I should have been with this moving lark, and some from the steroids processing things a bit differently. I have been lucky so far with the other drug, no feeling of nausea.

I have decided that during this time of adjustment to the treatment I am not going to beat myself up about what the scales say as long as I am being sensible........and they don't go out of control. It seems a bit weird, but since going on the steroids, it seems it has killed my "i'm full switch" and I seem to be able to eat more capacity.......lets hop the dr's wean me off them in the next few weeks. I know he wants to try me at 5 mgs in about 6 weeks time, depending on what my blood results (weekly) do.

Anyway - should hit the shower and get organised for the movers, less than 2 hours to go and I will "on the road again". hehe - god I am dork.

Oh the last thing, Porsche seems to be handling hte new foster home really really well, we will pop over and see her this weekend as we forgot to drop off a gas heater that we are lending the lady......and with Riddick, I decided to put him at the local cattery as he was too flighty and I really thought he was a bolter wanting to happen, so he is happy and safe and that is the main thing.

Auto Immune Hepatitis - Some facts

• Hepatitis is a general term that means inflammation of the liver. There are many forms and causes of hepatitis (such as viruses and certain drugs), including autoimmune hepatitis. In autoimmune hepatitis, the body's immune system attacks the cells of the liver, which causes the liver to become inflamed.

• CAUSES — It is not clear why autoimmune hepatitis develops. Researchers suspect that some people inherit a genetic disposition that could make them more likely to develop it. Sometimes drugs or infections trigger the development of the disease. (IE this is NOT something I have Contracted by needles or sexually transmitted and nor can I give it to anyone else)

• SIGNS AND SYMPTOMS — The most common symptom is fatigue. Some people also have symptoms of hepatitis, including an enlarged liver, jaundice (yellowing of the skin or eyes), itching, skin rashes, joint pain, abdominal discomfort, abnormal blood vessels in the skin, nausea and vomiting, loss of appetite, dark urine, and pale or gray colored stools. (I had the bold ones)

• DIAGNOSIS — Autoimmune hepatitis is diagnosed with blood tests and a liver biopsy. During a liver biopsy, a small sample of liver tissue is removed and examined under a microscope. The biopsy can help to confirm the diagnosis and determine its severity while excluding other potential causes of liver disease.

• Duration of treatment — As a general rule, treatment is continued until the disease is in remission, the treatment fails, or the person develops severe side effects from treatment.
  Remission is defined as a lack of symptoms, near normal levels of liver blood tests, and improvement in the appearance of liver tissue (based upon a biopsy). The initial period of remission generally occurs 12 or more months after treatment begins. Approximately 65 and 80 percent of patients achieve remission by 18 months and three years, respectively.
  Approximately 50 percent of patients remain in remission or have only mild disease activity for months to years after treatment is stopped. However, most patients must eventually restart treatment because the disease becomes active again (relapse). Relapse typically occurs within the first 15 to 20 months after treatment is stopped.

I am on two different types of drugs....one is a steroid, which is prednisone, and my doctor is going to try me on a 20 mg dose to start with and then pull me down to 5 mg after about 6 weeks if I respond well. The other is azathioprine which I may need to take forever.......we will see. I am working very closely with the team at Hamilton to ensure that this works with my gastric bypass and that we stay as healthy as we possible can.

Feel free to ask any questions at all - it will help me to learn about what is happening.

News & treatment Plan

Well it is like I thought, Auto immune liver disease (hepatitis) and we are starting the medicine this morning. The doctor gave me a very good link for a website that explains all about it. There are no nasty pictures or anything, just informative material. You can get to it HERE

I am feeling really good about where we are at, and that we can now move forward. I spoke to him about the possibility of working and he said if I feel up to it then no problem. He said I might feel nausea but it should be manageable. So depending on sign of from the CEO I might have work for the next 12 weeks or so, which hopefully will be a good foot in the door, and hopefully will lead to further work down the track. I will keep everyone updated as I learn more.

I am going to be working closely with my dietitian at Hamilton to try and combat the increased appetite that I might get from the steroids.

Anyway, off this morning to meet Porsche and Riddicks new foster mum (hopefully) and then to get a blood test and then to work. Pretty much just have today and tomorrow left in the office and then I am done with that. It has been quite nice to have this wind down week just getting things finalised.

Oops sorry

I have gotten a couple of reminder texts yesterday that I have not updated in a while and some people are worried about what is going on.......well, it has been busy with wrapping up work and packing to move and just hanging in there healthwise.

I am back to the team at the hospital today to hopefully get some results, although I also recevied a semi urgent referral for a US30 cardiac scan, so not sure what is going on now. I have had a very sore couple of days in my joints again over the last couple, and have been very very grumpy. I have also officially finishd at work, but I am helping htem out this week to make sure all the billing is done and everything is returned to where it should be returned.

We are moving most our our stuff to storage next Wednesday and then just our computers and bedroom stuff to Si's parents most likely on the Thursday/Friday. The landlord has people coming around tonight to take a look and again on Saturday. I know that it is an inconveince for them us leaving so quickly but as I pointed out last night, I didn't plan on any of this stuff happening, ie - me being sick, or losing my job.

Oh, depending on today, I might have 3 months temp work starting next week, but it really depends on what the doctors say today and if the company concerned is okay about my health situation. The people are known to me, and it still might be better for them to have me at 70% capacity than trying to train someone new for the 12 weeks........have to give them an answer by Friday, so I am going to ask the doctor today if he thinks I should be working or not, or at least at what level if I can work.

Anyway - lots to do today, getting keys cut for the new house, buying some thermals and warmer casual pants. Going to the GP, going to work for a little bit and then also going to the hospital at 4pm........long day. At least I won't get too nervous!!!