5bugles wrote:
Sounds like you are facing a lot of challenges, but it also seems as if you are keeping a positive outlook. I've found that staying positive helps me keep goin tand gets me through the rough times. Hang in there, Suzy!
Thank you!
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Now my recent hospital visit (outpaitent planned appointment for flow test etc.) has resulted in me being recommended to try Tamusolin - I've seen what online what it will do, but does anyone have any practical ideas or expereicnce that might not immediatly apparent form the packet?
Start date is TBC as it was only a week ago past Thursday - my doc hasn't had the letter as of today to add it to my list (drawer number 19 will be lol!!) - but I will try each week.
Shower installed and a shower seat added, which are working well.
Below is a general health-related FB post I did a few weeks ago - to bring everyone up to the same point. Most of this covered above but maybe of use to anyone new?
My medical history is really chequered. As there are new and old people on Planet Suzy, and I feel time to catch everyone up, so we are all singing from the same hymn sheet, if you like. This is because some of you know some bitts, but I’d like you all to know the rest. on the same state. It should be understood that none of these actually are new - or fatal in clinical terms, but there were a few close hits with depression/suicide attempts in 2017 and 2018 (much better now). First four have the biggest impact, rest more minor. Please don’t feel sorry for me – this post is to inform only.
“The Big Four”
1. Myalgic Encephalomyelitis (copied the full spelling from Wikipedia so I’m sure someone will point out if this is wrong!)/ME/Chronic Fatigue Syndrome/CFS
When? Diagnosed in 2017, no current cure.
What? Causes me to be tired, and often have really bad days/have to cancel or change things at short notice. Hence normally a day off after days out. Particularly bad when combined with other issues i.e. tired so walk into table so get upset etc. Genuinely, no two days can be predicted – I’ve tried to kinda note down patterns but in my case, there is no obvious source.
2. Huntington’s Disease/HD/Huntington’s Chorea
When? Inherited from my father, gene test positive in 2005. Currently in very very early stages of the disease. no current cure.
What? Causes co-ordination, moods and memory problems for me right now;
Co-Ordination problems – walk into things, trip over, stumble, fall on street, ankle will give way, etc.
Moods – see BPD/D/A as better than was.
I can have problems remembering more recent events and sometimes appointments, or I might have to ask a question more than one time. This is in contrast to, for example, being bale to remember entire timetable leaflets from 1989/1990s tayside area bus wars, for example, but I may need to ask the name of who I am speaking to several times.
3. Borderline Personality Disorder/Depression/Anxiety
When? BPD formerly diagnosed after moods issues in 2011, but mostly stable now. Depression/Anxiety probably go back years but first formal problems in 2002/2003.
What? BPD gives me rapidly changing moods – although through the Quietapine I was prescribed from the HD clinic in Cambridge, this has been better than before. (Also cured my insomnia… 99 times out of 100 !!!)
Depression/Anxiety often makes me feel low, not worthy, depressed even to suicidal thoughts – formerly on an hourly basis or worse but now much better and get triggered by other problems coming. I think this was partially because of four years at a Christian school when I was deemed by one teacher to be not worthy – yet as soon as I went to Mossgiel I was in beyond the top classes. So that probably had an impact on me, or so thought some therapists in 2006/2007. Think I blogged about that when I wrote to them? Anyway after years of being told I wasn’t good enough – yes it has had an impact on a 5-9 year old!! lol
4. Incontinence / Urge Inco. / Irritable Bowel Syndrome
When? These things started out the blue in 2002 after I left a dream job on bad terms but IBS and urge issues probably more likely all my life. Worse then than it was now, although not as bad as before late 2002.
What? Largely urinary (sometimes faecal) Incontinence at night, and less so during the day. Requires use of protection at all times, largely as a result of two sets of different urges that can come from nothing.
“THE REST”
5.6.7. Asthma, Heartburn, Insomnia.
Mild issues by comparison - mild asthma (no attacks since 2006), heartburn (usually controlled by ranitidine being added alongside an antihistamine), and insomnia (now usually controlled by Quetiapine for other things).
8. Previous Gender Issues
Yes, sometimes I still get asked, and for those wondering what the hell I mean by 15 years of Suzy despite being 40 – yes I’m a postop male-to-female transwoman. Came out 2004 (hence April 2019 being 15 years of Suzy), and only serious regret was not doing it sooner. Surgery 2007 then 2009 fixer upper then… maybe more in 20-oatcake but we will see how the rest of my life goes.
9. Teeth and Speech Issues get an unhonourable mention too
I have a number of issues here.
Speech – was tongue tied years ago, hence speech therapy work required in my early days. As well as HD having the potential to effect my speech later, I’ve had some since transitioning. So I've always been conscious about my voice.
Teeth – totally separate – late 1980’s I broke my tooth on the ice at primary school. Despite many dental visits, every time making the pain worse and worse. So, several reverts to doing work, but too many problems and pain mean it’s somehow on a back burner as every time they try – things get worse. No plans to do anything right now, but maybe look again late 2019/early 2020 when the rest of my life is quieter!