Rheumatoid arthritis sucks!

It is now the end of May, and I can't believe we are getting close to being half way through 2012. I am still struggling with my rheumatoid arthritis and I am in hospital as I write this post. We have decided due to my illness that Max will have his top surgery in Melbourne - there is a great new surgeon Andrew Ives who has trained with Megan Hassell. When Max and I were thinking that my RA and new medication would be sorted by now, we booked in to see Mr. Ives and have a consult. It went really well and we tentively booked in surgery for Max at the end of July. Unfortunately we have had to cancel it and leave it open until we start to see some improvement in my health. The last six months have been really tough, not only has Humira failed to work, so to did the next medication Simponi. Also my RA has been getting worse. Joints affected are fingers, hands, wrists, right elbow, toes, feet, ankles, right knee and hips. This means pain and stiffness in LOTS of places. Leading up to my hospital admission I was struggling to make myself a cup of tea, drive, shower - well really anything. I have also been working 3 days a week too (at the expensive of socialising and leisure - lucky I enjoy my work so much and in a supportive environment). Another thing that sucks about RA is the side effects of the medication used to treat it. I take Prednisolone which is a steriod, this causes so many side effects both short and long term (http://en.wikipedia.org/wiki/Prednisone), though it is the only medication that I am on that is currently keeping me functioning (if you can call it that). Also the DMARDs (disease modifiers anti-rheumatic drugs) are immune suppressors which increase risk of infection and cancer - I am on Arava and have tried all the others. I also take Methotrexate which is a chemotherapy medication (once a week) and this makes me feel nausous and fatigued. Ironically in also increases your chances on cancer. So the plan while I am in hospital is to develop an adequate pain management regimn (now on oxycontin and endone) and reduce my blood pressure (side effect of Prednisolone and being in bad pain for 6 months). Also I should be starting another new biologic DMARD called Orencia. This medication in trials is shown to have good efficacy, it will just take 3-8 months to take effect. I have positive feelings about this one.

My Chronic Illness

Wishfully thinking, I did not want my chronic illness to impact on Max’s transition, however reality has struck and now his surgery is on hold. I have rheumatoid arthritis (RA), which is an autoimmune disease, meaning that my immune system attacks my body. Mostly my joints are effected, however other systems in the body can be attacked such as the eyes, lungs, heart and blood vessels. RA is very different to osteoarthritis (OA), as OA is more of a wear and tear of the joints (as you get older), compared to a RA immune attack. If you want to read / learn more - a really awesome website is Rheumatoid Arthritis Guy
Last year one of my medications Enbrel – a biologic disease-modifier anti-rheumatic medication (DMARD) – started to lose it efficacy, so my rheumatologist decided to try a new one; Humira. Since these medications are very expensive and Medicare pays for them, I had to finish Enbrel before starting Humira. When this happened, I had one of the worst flares of my 21 years of RA. I have been very limited in my ability to walk or stand for more than 5-10 minutes at a time, my pain levels has been intense as too my fatigue. In a nutshell, I have been very unwell. I stopped socialising, I had to stop working for a while, and this has put a strain on me and Max. This flare has affected us physically, mentally and financially. This is why we have had to put the surgery on hold. We just could not cope going interstate, and trying to work out who will look after whom. I feel terribly guilty about delaying the surgery, though intellectually I know this is not my fault. At the moment we don’t even have an idea when the surgery may happen.
I have now been on Humira for 2 months and it is just starting to take effect. At this stage, we still don’t know how well it will work and to what level of functioning I will get back too. I am optimistic.

DUDE Magazine – Trans Male Zine

DUDE magazine is an excellent publication that started in 2011, and the purpose of which is “to celebrate positive representation of trans guys and to share skills and knowledge within our wider community.” The first zine focus was on educating people about trans* dudes. You can find a copy of it here
DUDE magazine has two more publications on the horizon. The next one to be released, later this month, topic is on body image and diversity. The third issue is on Lovers – sex and relationships. I have written an article for it and hope that it gets published. The article is based on posts from my blog.