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.

Update on surgery decision

Last week Max found out that his contract at his job is not being renewed. This is due to the state government change, and this whole team is being let go. This has really put a spanner in the works. Max has decided that the best thing is to put the surgery on hold, not that he wants to, because it is the best thing to do. He is looking for a new job straight away even though he has 4 months left on his contract. The issue of looking for work now is, all his documentation still states he is female and he passes 100% male. In Australia (and it depends state to state) you have to have at least top surgery and some type of bottom surgery (to make infertile) to change your gender. Max is going to have to find a job that understands and is use to working with diverse people. I’m glad he has time to look for this cultural fit in a new job. Also Max will have to call his past employers and tell them of his name and gender change. It really is a total shame that he could not complete his transition at his current job as they have been really good about it.

We caught up with some friends (a couple) to talk surgery, as Richard will be having top surgery too soon, interstate as well. He stated that Dr. Bartholomeuzs told him that nipple sensation was 50/50 where he told us that is was 100%. At this stage Dr. Hassell feels like the better option. However for now, surgery is on hold.

A big decision to make

Last weekend we flew to Sydney to see Dr. Megan Hassall on Monday (7th February). We arrived on the hottest day in 4 years, 43 degrees (yuk) and we had flew out of Melbourne as it was experiencing flash floods! Funny to think that we were suppose to fly into Brisbane the day it flooded too, but had to postpone it a week. Australia, this year is not doing well with the weather.

Anyway, Max and I have seen both Dr. Bartholomeuzs and Dr. Hassell. Now Max has to make a decision as to which one to go with. We are going to be discussing it tonight, so I won’t be writing too much now. They both have their positives and negatives. At the moment, Max is messaging and talking to other transguys about their experience with surgery and the surgeons, to help him make his decision.

Max's mum comes for a visit

The other week Max’s mother stopped by for a quick coffee on her way to the airport (as they live overseas) as we hadn’t seen her for awhile. Max was gearing up to tell her about his upcoming surgery, but was worried about how she was going to take it. I suggested that, Max could ask her how much she wants to know. When his mother arrived she realised she had left her passport at the farm, and that she will have to drive back to get it, significantly cutting into the time she was going to spend with us. Max nearly didn’t ask his mum what she wants to know about his surgery, because she was so frazzled, but I gently nuzzled him to ask. She responded very well, stating that she “of course, wants to know what is happening”. First she asked if it is genital surgery, which Max replied no. She then asked if he was going to get a penis. We both brushed this question off, as this is not on the agenda as yet.

I think many people are naturally interested in bottom surgery (genital surgery) of transsexuals, however it is a very private topic. If you are uncomfortable describing your genitals in detail to someone else, then so is a transsexual.

Max discussed with his mum about his top surgery, and she stated she supports him and wants to know what is happening. This was a huge relief for Max, though we are not sure how much we want her involved as she gets overwhelmed with people having surgery. Max’s dad just had shoulder surgery.

Throughout the visit, Max’s mum referred to him by his birth name, and I referred to Max by his name. His mum pointed out (on her own) that she is saying his birth name because she can’t bring herself to say Max yet, but that she is able to write it (in emails and on the Xmas card). We told her that how she is going is fine and that with time it will come and feel more natural. I told her that I have been calling him Max for a nearly a year now and cannot go back to his birth name. We had a very good conversation about adjusting to Max’s transition, and that we should allow for individual different in how and how quick we adjust. Overall, it was a very positive conversation.

The road to surgery

It is customary in Australia for a transguy to be on T for 12 months before top surgery. Firstly a definition - top surgery is removal of the breasts with a chest reconstruction into a male chest, it is not a mastectomy. Max has been on T for 6 months now, and with every passing day he is becoming more and more restless to get his “chesticles” (what he calls them) off. They (still not sure who it is that is making these decisions) believe that 12 months is a good time, as by this stage the pectoral muscles have developed into a more masculine shape making it easier for the surgeon to reconstruct into a male chest. Anyway, Max thought it would be good to start doing some research, which I am not against, but thought that it might fuel his eagerness to get them off. Surprisingly, there are only 4 surgeons in the whole of Australia that do this type of surgery. Additionally the only one in Melbourne (there is one in Perth, one in Brisbane and one in Sydney) is 70 years old and about to retire. Therefore we are limited to three. Max didn’t find any information on the one in Perth, however did find some photos of previous top surgery for the ones in Brisbane and Sydney. So Max started getting ready to organise surgery. I thought it was a little early but I was wrong. The following is in Max’s words.

So I thought I would jump the gun and book my consult for surgery this morning. I'm a little anxious about budget and what Medicare and my health fund would cover so I thought I'd get on top of things to reduce my anxiety. Clearly I haven’t learnt from my past experiences, which in relation to medical transition (booking appointments, etc) have been quite stressful. This turned out to be no different.

Research into procedures and results over the past few weeks has led me to choose Megan Hassall in Sydney for my top surgery. So I called her rooms this morning and was informed that the next available consult is in February 2011. I booked my appointment, got all the pertinent information and was told to bring both a referral and a letter from my psychiatrist. Given that I’m hoping to get my procedure done in April 2011, it feels like cutting it a bit fine. But OK.

Given that I have chosen to go with an interstate surgeon, I’m wondering what the role of the local gender clinic is for me. I am a patient of the clinic and I’m wondering why. So I called them this morning. (I called them last week to begin these discussions about surgery, but the clinic is only open on Tuesday and Wednesday so I wasn’t able to get in touch with them until today.) I explained that I am seeing their psychiatrist as a private patient at his private rooms, that I am seeing a psychologist as a private patient and that I have booked my consult for surgery in NSW as a private patient. “So I am wondering what the clinic’s role is in my patient journey?” The response was very unclear – perhaps if you needed to see a social worker or another psychologist or someone else here. Like who??? How many mental health professionals can one person see? Given the complexity of my questions (really??) the receptionist had already put me through to someone else and this was the quality of response. I’m not sure what is more shocking – the fact that no one there is able to explain things to an intelligent, engaged and enquiring person or the fact that this person didn’t even know that Megan Hassall performs top surgery for FTMs.

The medical transition process has been an incredibly frustrating and often confusing journey so far.