Sunday, 3 November 2013

Life on the run

It has been a while since I wrote, well just over 3 months, but it feels like 3 years with so much happening, but that will come later.

I never want people to feel sorry for me. What I do want is friends who don't care if I vent and that can vent to me, knowing that I don't mind. Mostly I vent via facebook. It is my communication to the outside world. 

If you think about how you vent, you may find it is to people you work with or see during the course of the week. Due to me not working (and yes I have been feeling worthless lately due to not working), I don't get to see many friends. In fact since the 7th October, I have seen three, face to face. No big deal, as everyone is busy with their own lives and we are not always free at the same time. This is just to show why I use facebook as my outlet to vent. Most of the people on it, except for a couple that I play games against, are all friends. 

One thing I have noticed over the past couple of months, is that when I put up a status, within 5 mins, there have been comments posted on friends pages that seem to be pointed at me. At first I thought that I might be reading something into it that wasn't there, but it seems to happen nearly all the time. 

Due to this, you will have noticed that I haven't put up much of anything. Everyone has different things to cope with and at different levels. It doesn't mean that any one person is worse off than anyone else. With me, writing it down, is my way of letting go and not dwelling on it. It is also the way that close friends know what is going on and I can get support just by knowing that they understand what is happening, even if we don't see each other.

Now having said that, I am going to put here all that has happened and if you don't like it, tough shit. 

It all started with having an xray on my foot. Yes I told people about it, but didn't say the things that the radiologist said it might be. So scared shitless until I saw the orthopaedic surgeon and had the mri to find out it was arthritis. Plan of action, get orthotics made and if that doesn't work, then surgery to fuse the bones together in my foot. 

No sooner had this been organized, then I was back seem him again and having another mri on my wrist. I thought just a ganglion but no, it was that plus Teninosis, which meant it had to be aspirated and a cortisone injection. This gave relief for a couple of weeks, but the pain is back, waking me at night. So I have to make an appointment to go back, as the orthopaedic surgeon said if it didn't last longer than a month, then it would have to be operated on to fix it.

I had the above mri, on the day after the high tea fundraiser. While the high tea was a success, it was a lot of work and anyone that knows me, knows I throw my whole self into it. Until it was pointed out on the day, while pouring coffee, my hands were shaking. By the time I sat down, my feet felt like concrete blocks and I couldn't really move them properly.

The next day and the Monday saw me lose control of my bowels. So another mri, as they thought I would have to have surgery immediately. Jan drove me to the Wesley and I am glad she did. I was in a bit of a daze with it all and it was good to have someone else there to hear what was said and to relay it. 

It probably took nearly a week for it to come good, then I had to see the specialist again at the Wesley, who talked about pain relief by injections in my spine, which I rejected and also to see a rheumatologist  to see if there is an underlying cause to the changes in my body.

The day prior to seeing him and Ryan's birthday, I got a call from Ryan's thoracic specialist, saying that readings from Ryan's latest home sleep study were all over the place and he wanted him in either the next day or the one after. Due to so much happening those two days, I told him no and when Ryan comes back he would come in. An appointment was made for the Tuesday. 

Again more worry as to what was happening and I don't think I told anyone. Thankfully it was that his ventilator was playing up and not anything that was happening with Ryan, so once that was established, he got a new machine.

In those couple of months, we had medical bills of over $1000 just on the above mentioned items, not the regular things we have. At the same time, Peter's job was an uncertainty. 

Also the place that Ryan gets his physio and ot from, has started charging $150 an hour. It is to come out of his package and they told everyone to get a review to cover the charge. Only problem is that we have had a review and been identified as needing more, but there is no money for it. We were in the middle of trying to get Ryan a new cushion to help with the pressure sores he had been getting, when we found this out. It meant that we sort of gave up on finding a cushion, as trialling more would mean charges. Luckily, Ryan found that just getting some gel pads to put in his current cushion will do. 

We had just wiped out any money we had on my medical bills and Peter going with Ryan to Sydney, along with the $2000 spent on the van, to be told we need to spend more. The rheumatologist is going to be $390 for the initial consult :O

Peter's job is safe until Christmas at the moment. We have been able to fit in some morning shifts for carers, so this way Peter can start work at 5.30 and come home at lunch time. I can then go to aqua aerobics, to try and alleviate some of the pain I have. 

We have come to the decision that if we can get enough for our house, then we can move and have money to get a new van and be able to put some away. If not, MDAQ have said they can assist us to fundraise for it.

Like I said, everyone has had trials that they have to deal with. So when you see me, or someone else on your friends list, writing about what is happening, know they are doing it because there is no one around at that time for them to talk to and getting it out there, takes some of the pressure off of their shoulders.