Limitations. To me, that’s always been a dirty word. It didn’t matter whether it came from my family, my friends or my doctors I was always determined to prove them wrong. Even as my 18th birthday approached, my rheumatologist was dead against me skydiving*, he told me it would be too much on my joints. I hobbled out of his office, and a few days later my family watched as I took my leap of faith, recorded of course, for two reasons:
- So I always had that memory of what my amazing experience; and
- So I could hand deliver a copy of my video to my rheumatologist, with a note explaining that while I may be in agonising pain, I have completed something that I have always wanted to do and the few days of pain were (in my opinion) a lot better than the thought of sitting in a nursing home in my senior years regretting that I had listened to those that told me I couldn’t do it.
*While I certainly don’t advocate that this is particularly the right course for action for everyone, I suggest you do your own risk assessment, with the input from your medical team and make your own decisions.
Fast forward 13 years and as my limitations grew, so has my ability to stick my head in the sand and pretend it’s not happening. I’ve always looked at it as accepting limitations was allowing the arthritis to win, and I’ve always been determined not to let that happen. I didn’t ask to have arthritis, and there was always that underlying anger as to why I had developed it. Not fair, I have too much to do!
I am now at the stage of having to create a network of people to help with even the most basic tasks. Vacuuming the floor uses up a day and a half’s worth of spoons. I am building a business but need to find someone that can be the face of the organisation because I am finding that the inconsistencies of this condition don’t allow me to plan an event and guarantee that I will be well enough to show up for it.
I think this in itself makes the condition flare up. Knowing I have to be somewhere at a certain time, on a certain date and I start to stress that I may not be well enough to attend. As silly as it sounds, I have even gone to the lengths of contacting long range forecasters to see if the day that I want to have the event will be a wet or dry week, in the hopes that in doing so at least the weather factor can be potentially eliminated.
It’s extremely frustrating because it never used to be this way and I am tired of letting people down.
- Have at least one other person willing and able to step in and run your event – regardless the size – just knowing that there is someone else there will help eliminate stress.
- Plan ahead – if weather is an issue check the forecasts – it’s not an exact science, they are not always going to get it right but at least you know you’ve tried.
- Make sure you are prepared for your event, with the speaker (if you have one), content, venue, catering, whatever else, booked and paid for weeks in advance.
- Have fun. Make sure you have fun.
- Dry run. Conduct some dry runs of your event, to reduce the chances of unforeseen events occurring. Unforeseen events will increase stress. Stress is bad.
I hope everyone is having a great weekend. Got more tips/tricks that I haven’t mentioned here? Do you know of good planning software that can assist with event planning/management? Would love to know about them 🙂
My mother has always taught me to set my goal and chase it, quitting is for those without drive or a strong enough reason to succeed. I’ve watched mum manage three businesses at the same time as looking after the house (with the help of my stepdad), as well as fly me all over the country looking for the next potential ‘cure’. She has always been one of my biggest inspirations. She taught me that the arthritis is a part of me but at no stage is it ever to control me. It is based on this strength and my need to help others with disabilities.
It is from this need that the idea for EnableDisabled.com was born. I have been working hard to build a website that is designed to assist those with disabilities, their carers and the frail-aged by providing up to date information about services that are available in their area (or online) which may improve their quality of life. The internet is drenched with misinformation and it is so easy to become caught up in ‘hype’ when you are desperate for answers. Having a disability myself I am all too familiar with this scenario.
To date, I have not been able to access any Government funding. I’m not sure the Government was ever contemplating anything as complex as this website would be created, so it has never fit neatly enough into the boxes required to access any funding. So far I have had to source funds myself and will soon be launching a crowdfunding campaign to help get EnableDisabled.com across the line.
If you would like more information, or to receive updates please send me an email EnableDisabled@outlook.com.
I look forward to having you with me while we make this dream a reality!
I have never had any interest in gardening until I met Mick. The only plant i had managed to keep going was a succulent (which is still taking over much of mum’s garden). My nana (who was born with not just a green thumb an entire hand!) has been guiding me along the way as I experimented over the last 6 years with different things. My successes to date are pineapple, paw paw, beans, cauliflower, pumpkins and chillies.
Now that I’m going through one of the longest flare ups I can remember I’ve started researching what plants are anti-inflammatory, that can actually be grown here on the Sunny Coast and which may be a bit tougher to withstand me ‘killing them with kindness’, as my nana so politely put my garden skills (or lack there of).
So I’ve discovered there are quite a few plants that have anti inflammatory properties and the ability to reduce free radicals therefore assisting the body to repair itself.
According to an article 7 Summer Foods to Fight RA, “The main food groups that will help reduce inflammation are the well-known antioxidants — vitamin C, E, beta carotene — flavonoids, and polyphenols” and it is beneficial to eat fruits and vegetables from every colour of the rainbow. The article also goes on to say that calcium depletion can also cause issues with sleep so I’ll look to factor in calcium rich sources into the garden as well.
So from my research the following fruits and vegetables are worth having in my garden.
- Turmeric root
- Pineapple (from experience pineapples are finicky and take around 4 years to grow)
- Garlic Chives (apparently very high in Vitamin C – often a vitamin that arthritic people lack)
We might start with that list and expand from there. I already have 4 lychee trees going strong, apparently they produce 200 kg of fruit each season if they are cared for properly (which would be handy as they sell for between $7 and $11 a kilo here when in season- it may help me fund the rest of the project).
Time to start researching the best times to plant and go from there! Will post my progress 🙂
Now I just have to find someone who can teach me how to cook fish!
Last night the Federal Treasurer Joe Hockey handed down the Coalition’s first budget in seven years and for those of us already in pain it looks like we are about to feel it that much more each time we go to the doctors, pay for a prescription or have an x-ray or blood test. Here’s the breakdown:
Let’s start with the bad news.
- A $7 ‘patient contribution’ will be charged to patients each time they visit their GP. Concession card holders and children under the age of 16 will only have to pay the contribution fee for their first 10 visits each year. It will be up to the doctor whether or not they charge the patient the $7 fee, if the GP chooses not the charge, they won’t receive their $6.20 bulk-billing consultation fee from the Government.
- The $7 ‘patient contribution’ fee will also apply to out of hospital imaging and pathology services.
- From 1 July 2015 a $5 fee will be applied for each prescription you have filled. This fee will apply to any medication currently subsidised by the Government’s Pharmaceutical Benefits Scheme. For those who hold a concession card the fee will be $.80 cents per prescription. For example if you are currently taking the drug infliximab (Remicade) non-concession card holders will pay $41.90, concession card holders will pay $37.70 (instead of the current $36.90).
- If you are on the Disability Support Pension (DSP) and under the age of 35 and first began receiving the pension between 2008 and 2011 you will be required to undergo stricter eligibility testing and may be required to join Work for the Dole, job search, education or workplace training schemes.
There is some good news:
- A Medical Research Future Fund in excess of $20 billion dollars will be created from the Government’s savings. The headlines are screaming that this may lead to an Australian being the one to cure Cancer, Alzheimer’s or heart disease. Seeing as how Arthritis affects millions of Australians I am hoping that some of the $20 billion dollars (that we tax paying arthritic Australians are contributing the fund) will also be used to fund research into curing arthritis too!
I’m all for getting the budget back to surplus but I don’t believe that politicians fully appreciate how much a disability eats away at our budgets when you factor in:
- Time off work due to illness (or trips to specialists – they don’t work weekends!)
- Cost of medication (generally required so that we can go to work)
- Soon to be cost of testing – to ensure that the medications are not causing more problems, and that the disease is under control
- Cost of other treatments such as physiotherapy, acupuncture, chiropractor, bowen therapy or massage (if that’s what it takes to help you feel better) – these practitioners also generally need to be seen during the working week as most don’t work weekends!
I’m keen to know your thoughts on this issue and how this budget will affect you. Please feel free to contact me at ArthriticEntrepreneur@gmail.com
My gorgeous staffy Krista has arthritis too. She is visiting the vet tomorrow for another cartrophen injection. Krista was diagnosed two years ago with arthritis in both her back knees and late last year it progressed to her front left leg as well. Krista started her cartrophen program with one injection every week for four weeks and then a maintenance dose every 3 months. This has worked really well for her in the past, but lately I noticed that whenever I was in pain, Krista has been to so we are now increasing her cartrophen injections to once a month to see if that provides some relief. She also has prescribed anti inflammatories if required. Krista loves having a warm shower as well, it seems to help.
Thankfully Krista has many more good days than bad, but I hate seeing anyone in pain so would rather get on top of this fast. She’s only 5 and has many more years ahead of her. A big thank you to the amazing team at Maroochy Veterinary Clinic for taking such great care of all our animals. They have been so patient with Krista, she hates needles.
Here on the Sunny Coast it’s currently not so sunny. So far today we have had 122mm of rain since 9am this morning (it’s currently 9pm). I’ve had a lot of trouble this afternoon with pain in my hips and I started thinking about how much (if any) research had been recently conducted into the relationship between arthritic conditions and the weather (or whether it was still widely believed to be ‘an old wives tale’).
A quick search online led me to this article – produced by http://www.medicinenet.com – Whether Weather Affects Arthritis, further research led to this article – produced by Medical News Today – Does Weather Affect Arthritis Pain?.
I continued my online search for something concrete which could give me a definitive answer as to the reason why the pain seems to be so much worse in the lead up to a rain event. My conclusion: a lot more research needs to be done in this area to find a definitive reason as to why I can be more accurate about upcoming rain events than the Australian Bureau of Meteorology.
For those that are living in Australia, I have found that Higgins Storm Chasing is quite good at providing information on upcoming weather events. They have a facebook page which makes accessing this information so much easier! You can find their facebook here.
Thank you for reading and I hope you are having a great night. I’m off to bed to listen to the rain continue to dance on my roof! I hope this rain is reaching the farmers as well. Good night everyone 🙂
Hi, my name is Tara. Thank you for visiting my blog page! I hope you find the information interesting!
I was diagnosed with Juvenile Arthritis when I was three, it is for this reason that I’m trying to focus my attention on promoting awareness of JA. I was told many different things growing up by the different doctors that treated me, and the most common topic seemed to outline more of what I ‘couldn’t’ do rather than what I ‘could’. This mindset lead me to some deep dark places which I never wish to revisit.
I am forever grateful that my mum is such a positive person. She taught me that there is no such thing as can’t, telling me that if at first you don’t succeed, try it a different way. (Which is a good thing, otherwise I’d still have difficulty doing simple things such as brushing my teeth!).
For years I have struggled with pain, even on very bad days I force myself to go to work, (it’s a good thing really, going to work helps take my mind off the pain and allows me to concentrate on something else), however the constant grind of hospitality (as much as I love the industry) possibly isn’t doing me any favours, which is why I decided that starting my own business may be the better way to not only help others with disabilities, but also allow me to work my own hours, and really knuckle down and take control of the arthritis and not let the arthritis continue to control me.
My website EnableDisabled.com is an online directory which (when fully up and running) will allow people with disabilities, their carers and the frail aged, find services which are designed to help them.
I’ll keep you updated on the website’s progress! Thank you for reading 🙂