10 Nov 2014 Leave a comment
09 Nov 2014 Leave a comment
Now that the goalposts have moved on the very positive side I am being admitted to hospital for a week from the 17th November. I have been fighting to try Ketamine infusions for years. In the other CRPS buddies I have and seeing other people talk on forums these days it seems that Ketamine infusions are used a lot earlier in the piece. This also boils down to of course having private health insurance too. For me this is my final option so I have a lot riding on this week in hospital to work.
My last appointment with my specialist a physio from the hospital as well sat in on the appointment . I had been telling her how out of control so many parts of my life feel now. My weight especially. I am very overweight to the point where I am worried about the other health problems carrying this much weight is causing. My knees go through stages where they are really swollen and really painful. Having CRPS all pain that you feel is completely blown out of proportion. I can drop something on my toe and still be complaining hours later. My left knee is currently very painful. Sharp pain and it gives out on me, just like it did when I was a teenager. I don’t remember doing anything to it but maybe I have damaged it. Carrying all of this weight puts a heap of pressure on my legs to carry me. The frustration of half a step forward and 4 steps back becomes more dangerous rather than a frustration when you a very overweight. So anyway this visit 2 months ago the doctor and the physio decided to have me admitted for a week for 3 days of Ketamine infusions and also try and fix other problems. I will be having physio each day, have my bowel issues looked at, visits with the psychologist and a psychiatrist and also get some kind of plan to help me lose weight. I have always found it really tough to lose weight dieting alone. For me I could be really good with my food but if I was not exercising I would stay the same weight. As much as I love the house I live in it is on the side of a really steep hill and I just can’t walk out of the front door and go for a bit of a walk and now I don’t drive. I feel like I have been thrown a lifeline and I want to make the very most of all of the help offered to me over the week.
So that’s my good news! Yay!
09 Nov 2014 Leave a comment
It has been a long while since I have been here. But my circumstances have changed and to write anything more than a few words is extremely difficult. I find if I have written a lengthy message to someone that right as I am about to send it I drop my phone or tablet and all my hard efforts is wiped. After that, it’s just too hard to start again.
I am trying to be good and use the voice recognition that both of my Samsung phone and tablet have. Again it throws in the odd bizarre word and you still have to go back and put in full stops so the reader has some clue of what you are talking about. I have always been a super fast typer. I think at one point I was around 130 words per minute so it is equally frustrating that when you do want to say something it takes forever. Today I have decided to crank up my Jurassic computer and just start writing a few lines here and there and saving it before I publish. Let me just Kick Start this poor old clunker
At the beginning of August I had a stumble tripping over some boxes in the garage. As I started to fall I grabbed an over door clothes hanger with my bad hand and my good hand smacked into the rear glass of my parked car. Most of my weight somehow hung on the clothes rail. I was really very surprised that my bad hand really didn’t feel too bad. My right hand was a little sore from hitting the glass of my car but really things could have been a lot worse.
Strangely enough 3 days later my right arm (which was my good arm) came on over a few hours to excruciating pain and my elbow locked in the straight position. Any slight movement became agony and I just couldn’t get comfortable anyway. This extreme pain stayed with me for a number of weeks. I did have a GP come to the house at Day 3 and pronounced that I he believed my crps had spread. The back of my shoulder was sweating profusely and the rest of my arm was purple and freezing cold. He said that I will wait around 3 weeks and see what function I am left with after it settled down. The first month was terrible. Having one hand with full blown crps and no strength and an arm that would not bend meant that I couldn’t do anything. No arms. I couldn’t get to the toilet in time and couldn’t wear anything but 1 dress in which someone would have to thread these broken arms through with fine precision without causing more hell pain. I couldn’t be left alone, I couldn’t even pick up my phone and ring emergency with the arm function that I had. I couldn’t open a door and leave the house if it was on fire. The first day I struggled through on my own but after that, someone had to be here with me.
At this point I rang my care company that shower me 5 days a week begging for extra services, I needed someone to come to shower me on Saturdays and Sundays as hygiene had become a huge issue when no arms work enough complete many many tasks. I was told that I had used the maximum hours that were available to me and the best she could do was to fill out some paperwork and try and get the ball rolling for short/emergency care. Within 2 weeks I was able to have 2 carers come a day but this only last for 2 weeks. The afternoon person would come, change my clothes and make dinner for us. Those 2 weeks we ate like kings it was fantastic. Another company was coming in for 6 weeks to shower me on the weekend. Phone call after phone call desperate to get help quickly and regardless of how bad your situation is…it won’t make the government departments move any faster. I had to apply to disabilities for ongoing extra services and now 13 weeks later my urgent case still sits on the managers desk. They had been waiting to ask the lady that interviewed me some more questions about me and she had been on annual leave for 2 weeks. For the record she has been back for a week and still nothing has happened. That was the end of me. I had kept it together for 12 weeks thanking my lucky stars that it could have been worse. But after this long there is a point when it is just completely infuriating.
Somewhere in the many many people I have spoken to I was in touch with a government department that look after young carers…which means they help my 16 year old son in many different ways. It’s trying to ease the burden on these kids so they can finish school to their highest ability. This beautiful young lady is now making these calls on my behalf and doing her very best to try and get my weekend showers returned for until I go through another round of interviews with another department. The biggest issue seems to be that I am under 65 and this is where urgent emergency help is impossible to access. The biggest problem in my life is that I don’t have a partner. He would have to be in charge of showering me and changing my clothes. Being under 65 with no partner is impossible. It all comes down to funding. The organisation that has been showering me on the weekend charges $98 for 2 hours weekend care. It all comes down to a word called funding. If you are over 65 I think this falls into the federal governments budget and under 65 the states budget. After jumping through hoops for this extra care, it may be granted and it may be well out of what I can afford or I may find it impossible to find one of the care companies that still have enough funding left to take me on. My frustration lies in that if I am struggling with hygiene issues is it actually humane to leave someone in this position for 13 weeks plus. I hope that once this is up and running I still have enough puff left to contact the Health Ombudsmen and relay this ridiculous system. I can’t be the only single parent in this situation.
Anyways we wait…and we wait….
06 Nov 2014 Leave a comment
Last Monday 3rd November was the first global CRPS Awareness Day. I had bought a couple of canvas’s a few months ago but they sat in the corner. I was daunted by trying to do something on a canvas but a day before awareness day I decided this was the perfect time to try out something that was very personal to me.
I was absolutely stoked with how this turned out. I recently found these beautiful ink sprays with a gorgeous shimmer. Unfortunately the photo has not picked up the lovely all over sheen.
I used some texture paste which I used a few different stencils that felt significant to me. The brick wall at the top of the canvas represents being so housebound (I have new significant issues that are now making it increasingly difficult to leave the house) The sunrise at the bottom is to remind me that each day is a new day. The fern on the left hand side is also to remind me of natures beauty, the every day beauty that is all around. The bling in the corners at the top was what i was always recognized for. My matching bold costume jewelry (if I’m not wearing earrings i am definitely not feeling like myself) . I also have always loved the checker pattern.
I shared my canvas on a few crps forum sites, 2 in the USA through Facebook. In just 2 hours my picture had gone Gangbusters. I awoke after a nap to find 68 notifications and more coming in thick and fast 🙂
How cool 🙂
10 Jul 2014 Leave a comment
I love the subject heading of Jamie’s post “Im good thanks” Too good an article not to share!
Hope you are all well and fellow chronic pain sufferers are as well as to be expected.
Mental illness cannot be fixed or at least cannot be helped until you say what is going on in your head. Now many of you don’t know me but, I was the guy who made everyone laugh was always upto harmless mischief. I was the guy that got drunk until he was sober and got drunk again, I was the guy that when anyone asked how I was I replied, “I’m good thanks” . I was the guy that wasn’t telling the truth, not because of a desire to be dishonest but because of a desire to protect and being completely truthful, I didn’t want anyone to think I was weak.
Now that I am in a wheelchair, spending a lot of my time at home, I find myself having too…
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13 Apr 2014 1 Comment
Really interesting article to share.
Chronic pain isn’t just constant pain, though that would be more than enough for anyone to handle, the truth is chronic pain always brings friends. These added challenges are obvious, but rarely taken into consideration by “healthy” people. Remembering that like all bullies chronic pain travels with a gang can help to better understand the life of someone in chronic pain.
Pain is exhausting. We have all had a bad headache, a twisted knee, or a pulled muscle, and by the end of the day it is a monumental effort just to read the mail. You may not have consciously realized it, but the pain that has relentlessly nagged you through out the day has drained you as bad as any flu. Even when you try to ignore pain it will stay in the back of your mind, screaming for attention, draining away all of your energy. With chronic…
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31 Mar 2014 1 Comment
A really great post with some great advice on being a friend to someone with Chronic Pain. Thanks Rachel 🙂
It has been said that you learn who your true friends are when you’re at your darkest moments. It is during those times that people who are just “sometimes friends” scatter away, leaving you at rock-bottom with those who are willing to stand by you until you regain your footing. Friends who walk alongside us through the flames are priceless gems, rare and simply irreplaceable.
If you are someone who has chronic pain, the valleys of life seem to be more numerous than the mountain tops, making it even harder to retain solid friendships. I have seen this in my own life as friendships have blossomed and wilted, changing with seasons. But, as I’ve said before, friendships and support from others are absolutely crucial.
Sometimes I think it’s hard for people without pain to really understand us or know how to be a good friend. I’m sure it’s confusing and…
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