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.

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.

I had a dream ...

A few nights back I had a dream in which Max was post top surgery. The dream was not about Max having surgery, it just happened to have Max in it post surgery. I don’t actually remember what the focus of the dream was, or even if it had a theme or topic (you know what dreams a like). However what I remember is that Max and I were chatting outside in the sun. Max was smiling and shirtless. In the dream, my eyes quickly flickered over his chest scars that were faded, and I noticed that I had a clear sense of how normal this all was. Max being outside, shirtless with his male chest, how this was always meant to be.

After waking from the dream, Max’s post surgery chest felt familiar instead of strange. I noticed that I felt a fundamental change towards total comfort and that I was not so worried about the unknown, as it no longer felt unknown. This dream really let me become familiar with Max’s new chest, before the surgery has even happened. I believe that I was worried about the significant change that top surgery will bring so suddenly, as opposed to the slow changes of T. I really enjoyed this dream and the impact it has on me about feeling more at ease with his top surgery.

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.

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.