2013 was a tough year, however Max had top surgery (finally)

2013 was a tough year, hence no posting. It was my health that caused the year to be so tough. To summarise, my stomach stopped working (gastroparesis) and I would have terrible bouts of vomiting that could last from 2 to 8 hours. I ended up losing 18 kilos at my worst - 59kg was my original weight and I got down to 41kgs. I was hospitalised 7 times in 2013 and had a nasogastric tube twice. I am currently 44kgs and live of medical supplement drinks and a small variety of foods that I can digest. We never know how eating will go for me day to day. Every day can be a struggle with keeping my weight stable, because once I hit 42kgs I have to go to hospital to get feed (nasogastric tube). I try very hard to avoid it, but I just don't have the control that I wish I had. I have also found out that I have Endler-Danlos Syndrome - Hypermobility Type (AKA Joint Hypermobility Syndrome) this could be the cause of my gastroparesis and a few other symptoms (migraines, blood pressure problems, muscle pain, joint dislocations etc). Max has done an excellent job looking after me. Max had top surgery on the 15th of November 2013. It has been a very positive experience, besides the first few days of recovery and having to have drainage tubes coming out of your chest for 4 days. It is amazing how much Max's new chest really suits him. It looks like this is the way it should have always been, and I guess that is true. I have been able to buy him new shirts without worrying how they will sit over his binder, and how comfortable he will feel in it. We had been delaying the surgery for so long, but it was so worth it, and not a tough experience as we thought it would be. My arthritis is well treated at the moment (thank goodness) on a medication called MabThera. I started it January 2013 and it took a few months to work. To be honest I hardly noticed as I was so distracted by my stomach problems. I would prefer joint pain over non-stop nausea any day, but I am thankful that my joints are hardly bothering me.

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.

Anthropologist on Venus – Explorations into the Straight World

It is strange that people treat you differently depending on who you sleep with. For example, when I was doing my doctorate I was an out lesbian (as I have always been) and I was not invited to hen’s nights or baby showers. All the other girls in the doctorate were invited and the gay guy. I remember that my feelings were really hurt, why does sleeping with women preclude me from wanting to celebrate friends’ milestones? These were overt discriminations that were made on false assumptions. Since Max’s transition, we are now seen to be straight (in our jobs, for example) and I notice that I have been treated very differently. For instance, I am automatically include in discussions about wedding planning, raising children and dealing with men who has “man flu”. I feel much more included which is lovely, but at the same time I worry that queers are not treated this way yet in our society.

I am enjoying this exploration in the straight world, I like being included (who wouldn’t), and I take pleasure in observing this new world. However, while exploring this new world, I have a concern that happens from time to time. I feel that I have to play a role or act a certain way, (and I am not sure what it is) and if I do it wrong I will get caught out. I think though, this has more to with my own insecurities of exploring and being included in this new world, than about people analysing my every move in hopes of catching the queers.

151 days to surgery.

Surgery is booked

Max has booked his top surgery for 22nd of March 2012. He is thrilled. I am happy and anxious at the same time. It will be such a relief once it is over. I am anxious at the fact that it is major surgery and that I will be caring for him in another state, without my social support network. However, I am happy that soon Max will feel a whole lot more comfortable in his body. Also, I am looking forward to being able to touch his back – bare skin, instead of through a binder. I believe that Max is looking forward to throwing away binders forever. It must be horrible to wear binders all the time, especially during summer. Lately, Max has been complaining about how hot he is (temperature, not sex appeal), and we have only just hit spring with no hot days over 27oC yet. The testosterone has raised his core body temperature, so we are bracing ourselves for a horrible summer in binders. I guess I should say Max, instead of ‘we’, but I include me, as I will be hearing all about it. At least, we can console ourselves with the fact that this will be the last summer of binding.
Only 156 days to go.

Update on feeling like a vulnerable liar

I saw my psychologist for our last session the other week, and I realised that I have dealt really well over the last year with the identity issue and feeling like a vulnerable liar. I have recently started a new job, and we all went out for lunch together as a team building exercise as everyone is new at this centre. During the lunch, one of my co-workers asked me if I was engaged or married - I do wear a ring on the fourth finger of my left hand, as we have registered our committed relationship – I answered this question by stating “we are not married, but we did buy a house together 18 months ago”. I was really pleased with myself. I answered the question, giving her enough information without lying or needing to disclose my personal life. Thus feeling like a vulnerable liar solved. I can still be honest and answer a question, while keeping my answers short. Furthermore, I think coming to terms with a new identity has also helped. I truly don’t identify as a lesbian anymore, I tend to just say Femme rather than Femme lesbian. I have also being associating more with people in the Sex and Gender Diverse (SGD) community, than the gay and lesbian community, and as I have reported previously I feel more accepted. I have also recently started POTS (Partners of Trans Society) and still run BFT (ButchFemmeTrans Melbourne). BFT had a special dinner event the other night and we had over 40 people attend. So being more involved in the SDG community, using Femme without the lesbian and running POTS, I have found my identity a queer Femme POT.