So its nearly time for my annual meltdown but this year I’m trying to not lose my shit! Its like a snow ball starts very small and different things add to it along the way and it gets bigger and bigger till finally it explodes, my snow ball is made up of failed ra drugs, 10/10 pain on a daily basis, feeling useless, unable to work, money worries, stuck at home because I’m unable to drive and because I dont have energy to go out, loss of independents, lack of sleep, watching life pass me by, unable to do normal every day tasks and It all gets a bit much sometimes. So Thursday last week I decided to join the Mooloolaba Bowls Club to see if could play bowls and it turns out that will a few aids I am able too, I dont have to bend down to bowl thanks to the bowling arm and I can have my crutches on the green thanks to a modified bottom of the crutches and if im having a really bad day I can use the special wheelchair for the green, they are very accommodating and all the ladies were fussing over us and so helpful and have started saving to buy the bowling arm which is $200 and also saving for a set of my own bowls which are around $400 -$500 but you have them for life, I absolutely loved it and had a great morning but I did not pull up very good on friday I had to stay in bed most of the day and same with Saturday so I think I might have to play and train fortnightly to give my body time to recover. When I was on the green I was the most relaxed I have ever been in my life and I think it my snow ball may get smaller as time goes on and I definitely think this is the sport for me and it also gives me something to look forward to as well as something to challenge me and I will blog my progress.
20 Oct 2014 Leave a comment
09 Oct 2014 Leave a comment
Tuesday 7th Oct I seen the biologics nurse and the results of my latest bloods was not good and explains why I am getting worse, my ESR went from 38 to 53 she didn’t give me the CRP numbers but said my inflammation markers were dismal. So it is very clear that Orencia is not working but as for what’s next we are unsure, my rheumy is still away at a rheumatology convention in America and will be back in 2 weeks so I will know a bit more of whats next. So this makes drug number 11 and counting, surely we gotta find one soon? In the mean time my body is falling apart and its geting harder and harder to push myself to get out of bed every day and also getting around is proving difficult and I need to stop being so stubborn and start using my wheelchair when we go out…. like yesterday for example we went to Queen street mall and walked one end to the other plus had to walk from train station as we got off at wrong station I took 21308 steps which is 13.64kmi should of taken my wheelchair but its tires are crap so left it at home which I shouldn’t of. You maybe thinking it’s not a big deal and for a healthy person its not a big deal walking from one end to the other, but when you have RA its a massive deal and takes a big toll on your body and today I am paying a hefty price I can barely walk, I am unable to use my right arm because my shoulder worked over time yesterday using cruchers to take some pressure off my feet and lets not forget the fatigue. We had a nice day but from now on I will be using my wheelchair whenever I have to leave the house. Lesson learned! Will update when I know more.
13 Sep 2014 Leave a comment
So after the failure of the trial drug JAD-W/JAD-Y my rheumy has put me on Orencia subconscious (stomach) injections I do myself weekly, I started on the 18th July and have had 9 injections I hate to rain on my own parade but so far I have had no improvement. I can’t remember if I have previously mentioned my gut issues? Well over the last few years they have gotten worse and im sure my large box of pills don’t help at all anyway I had a endoscopy back in 2012 and it didn’t show a lot, my gp decided to get another one done Oct last year and it showed a sliding hiatus hernia…which is when the stomach comes up in to your chest cavity its is very unpleasant to say in the lest! When I bend over food comes back up into my mouth and it also happens when im asleep and I wake up choking and the reflux is a killer too. On Tuesday I seen my surgeon about fixing it and he is happy to go ahead, I will be going under the knife in Nov but i will see him in Oct to work out whento stop my RA meds because as you know I am immuneosuppressed so i have a high risk of infection, people with RA are like new borns and the elderly we get sick easy and end up in hospital. The simple cold or flu knocks healthy people for a 6 its 100 times worse for us!
Well thats it all caught up will post again soon.
Over and out….
13 Sep 2014 Leave a comment
On the 13th October 2013 we did the color run on the Sunshine Coast and we raised $1000 for Arthritis Queensland, we had an awesome time and we finished the 5k’s but I definitely paid for it i could barely move my arms and shoulders for a week because the course wasn’t just on the road it also went through the schools oval, everytime I got stuck on the grass or sand lovely people would come to our aid and lift me out we didnt have to ask they would all pitch in and help it definitely lives up to its name as the happiest 5k on the planet!!!!
13 Sep 2014 Leave a comment
it’s been a while since I last did a post and a lot has happend its been a big few years! So the last time I posted I was feeling very frustrated with the treatment I was receiving and the disease, I had to have a break from posting to get my head around what was happening and what was the next process. The rituximab failed miserably and it incressed my CRP ESR levels so as a last ditch attempt my rheumy put me on cyclophosphamide a type of chemotherapy for 3 months in the hope that it would wipe my immune system out so I would become more receptive to treatment however this also failed and my rheumy was left with no other options, he suggested I migrate south as he could no longer help me but he has a colleague on the Sunshine Coast Qld that my be able to help so in May 2013 I migrated to the Sunshing Coast.
This is the view from my new home in Nambour on the Sunshine Coast Queensland.
Now settled in Nambour my first appointment with my new rheumy Dr Dave Nicholls was in July 2013, he said I dont have many options given all the treatments I have had so far but it was my lucky day as they had a clinical trial about to start and that I qualified for it, which in its self was luck because clinical trials are normaly only for people that respond to treatments but this particular trial wanted people who have not responded to 3 or more biological drugs which I have failed 6 treatments so into the trial I go. The trial was for JAD-W which is a jax inhibitors so it works totally different to other biologic drugs, the trial was double blinded so that means my rheumy nor my clinical manager would know what dose I got or what my inflammation levels were, you either got the placebo, 2mg or 4mg. After 12 weeks you get rescued if you were on the placebo you went to 4mg and if you were on 2mg you went to 4mg, every week for the first month had to see them and would fill in a very in depth DAS on a tablet then blood test, pee test to make sure I wasn’t pregnant then they would take blood pressure and weight all the info would be sent Singapore and then onto Switzerland. After the first month my check ups were fortnightly than monthly than 3 monthly. In June 2014 the took me off the trial as in 12 months I had not shown any improvement at all which a MRI confirmed, the only thing the drug did is increased my weight from 93 to 109kg in 12 months the only thing that changed was the trial drug. Since stoping the trial drug I have lost 4kgs hope it continues as my RA being the worse its ever been I am unableto exercise I barly can shower my self some days.
28 Nov 2012 Leave a comment
Joint Health with Nutrition and Exercise Nutrition and exercise are powerful protectors of long-term mobility, and can be a valuable focus for those concerned with hip health. This holds true not just for people seeking to prevent future hip problems, but also for those who have had to undergo hip replacement. That is because the healing process and the restoration of mobility rely upon both, as does overall joint health. Taking this approach is particularly important for people dealing with additional surgeries and complications resulting from recalled metal-on-metal hip replacement systems, like the Stryker Rejuvenate hip replacement implant. Tissue Repair, Joint Health and Bone Growth Nutrition is essential to the body’s ability to restore damaged tissue, a complication associated with the metal-on-metal hip replacement types, and promote joint health. Vitamin C and protein are heavily involved in creating and maintaining the actual structure of connective tissues and cartilage, according to Oregon State University’s Linus Pauling Institute Micronutrient Information Center. Omega-3 Fatty Acids are important to joint health, including reducing inflammation. Calcium, phosphorous, copper, magnesium, and Vitamin D are vital to bone development and density. A diet rich in whole foods is the best way to achieve optimum nutrition because there are numerous phytochemicals that cannot yet be pharmaceutically copied. These nutrients often work in partnership with other vitamins and minerals, boosting their ability to perform their tasks within the body. However, complementing the daily diet with carefully selected nutritional supplements can be a practical means of being sure that nutritional requirements for achieving health goals are met. Achieving and Maintaining a Healthy Weight Excess weight is bad for hip health and stresses joints more than they need to be. Keeping weight under control can reduce joint and hip pain and perhaps even help to avoid surgical intervention. Being overweight or obese can have an adverse effect on restoring mobility after hip replacement surgery, slowing the process significantly. Nutrition and exercise is the best way to achieve weight goals and promote long term health. Range of Motion Carefully performed, targeted exercise can promote joint health by increasing and preserving flexibility, according to the University of Maryland Medical Center. Exercises geared towards range of motion improvement are done in a slow, smooth, controlled fashion. Sharp, jerky motions can cause damage, and should be avoided. Eating with joint health in mind is important, as well. Vitamin C aids in collagen production. Collagen is essential to the function and strength of connective tissues and joints. Always consult a health care provider before making significant changes to the physical routine, especially after surgery or if dealing with a complex hip health issue. Lifestyle Makes a Measurable Difference Nutrition and exercise are two lifestyle areas that have the potential to make a major difference in overall mobility and well-being. They can work to protect against serious hip and joint problems by eliminating two primary factors in their severity – being overweight or obese and the sedentary lifestyle. Clinical research has demonstrated that making improvements in these two areas can have a positive impact on healing after surgery and on the restoration of mobility. Elizabeth Carrollton writes about defective medical devices and dangerous drugs for Drugwatch.com.
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20 Oct 2012 2 Comments
It’s been 7 weeks this week since i started the new Rituximb infusion and with great FRUSTRATION i can say that it is not working as i have had no change in pain or how i feel if anything it’s worse my pain level has been between 7-10 and more than 6 joints are agony to touch and I’m eating pain meds like lollies, Twice a day i take 1x Tramadol 200mg Slow Release and for breakthrough pain i would take between 6-8 Tramadol 50mg and it would only just take the edge off. Had to call my Rheumy in October to let them know how I’m doing, so told them there is no change and they said there is nothing they can do until they see me December 19th.It’s all starting to get a bit much so off to my Gp yesterday to sort something out, he has taken me off all Tramadol and put me on a high dose pain patch called Norspan 7 day transdermal patch and delivers 20 mircograms per hour for 7 days and for breakthrough pain he has started me on Temgesic which has to dissolve under my tounge it gives me on 0.2mg, he said since i have been on the Tramadol since i was diagnosed 4 years a go it not going to be a pretty change over to new pain med and i may suffer withdrawals and will take a few days for the new meds to help. In the car Sam and i chatting about my Rheumy who wants to retire and told the hospital when he was going to retire at the end of next year and the hospital have done nothing to bring in another Rheumy, and because we are classed as regional we only get one Rheumy and it’s 6 months between visits so I’m thinking about going private next year to Brisbane, Melbourne or Sydney where you see regularly and they deal with your pain as well because at the moment i see gp for pain and Rheumy for RA , my gp wants me to come off one of the RA meds Methotrexate which is a chemo and a basic RA med and not sure if i want to do that without my Rheumy knowing. I ended up having a break down in the car crying and sobbing because I’m in pain ALL the time I’m exhausted when i wake up, I’m not sleeping well and I’m FRUSTRATED that my stupid body is not responding to treatment, and FRUSTRATED because i don’t see my Rheumy often and I’m FRUSTRATED because I’m not living life I’m just existing. Sam called my Rheumy and said they have to see me before December because I’m shit and have gone backwards again so i see them next Wednesday 24th. Sam said when i see them to not put my front on let them see Me and that I’m not coping, Sam said the can see that I’m in pain and my joints are swollen but i don’t show them how much it affects me, i tell them that I’m in a lot of pain and I’m shit but i don’t show my emotions or that I’m getting depressed as Sam says i have my front/wall up and they think emotionally and mentally coping, which normally i am coping but i think this treatment not working was the straw that broke the camel’s back.
At 5pm last night i put my first pain patch on and at 9pm i took the new breakthrough med with in an hour of having it i got a headache and pain was having a party in my body and it didn’t help that i took my anti depressent which helps me sleep later than i normally do so couldn’t go to sleep and I’m sure an elephant was siting on my chest i was still wide awake at 2:30am i finally went to sleep not sure what time but it was a restless sleep tossing and turning, i woke up at 9am with a nasty headache and ALL joints aching/throbbing and that bloody elephant is still sitting on my chest and i feel like i have run a marathon and gone a few rounds with Mike Tyson. Time for more pain meds i will updated on Wednesday after the Rheumy visit.
Hope your all well! Until next time take care! :-)
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