my place here

Finding it is hard.

 

It gets harder when website and news sites and social media sites and so many more make a big deal of blogs. Bloggers. Blogging.  It has sort of become a thing where if you have not ‘made it’ then well, why are you here at all?

 

So I didn’t talk.

 

I did not know what to say.

 

Life is hard. I got the letter saying I will get a new insulin pump weeks ago. There are things I should do. Adult things. Ask about supplies and timelines and details. But I cannot. I am frozen. I was promised security and it has gone. I was given a choice and that has gone too. I do not like my second option. I do not like the screen or the wizards or any of it.

 

I want to stay as I was.

 

But money did not ask me.

 

 

I guess my place is now gaping at the world and the questions and the answers that don’t fit me.

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Lucky.

Windows updates when I did not want Windows updates have erased this posts so many times that I wondered why I bothered. It kind of felt like another way Westminster was kicking me in the teeth. I get political. Often. I go out on the beat for my candidate and I do that until my tendinitis is screaming and my fatigue aches. I do it because I believe in what I am doing.

 

There are far too many people in the so called United Kingdom right now in dire need and that goes far beyond any health aid I’ve mentioned before. There are people being told the best that can be done is three months on an air bed in a leisure centre or town tall while the thing most likely to kill them is taken care of. What about all the other checks? What about how being IN those places could kill people.

 

It destroys any other post I thought of putting together. I am safe. I know my doctor is close. I know my animas delivery will come. I am lucky.nintchdbpict0003314061771

*brushes dust off*

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*dusts place off* Oops? I graduated. I went into that ‘why can’t I get a job everything sucks’ funk’. But then my good friend was writing about Nasty Women and some experiences you get being women such as male doctors trying to explain to women what a vagina looks like and things like that and mentioned me and my endometriosis rambles here. This reminded me not much of any rambling had been happening here. Oops.

 

So, bits of this were written up a while ago  but then I slumped into who cares? Well I care? I like rambling to myself and hey if anyone reads anything here and it helps then cool.

 

What is new? Many things on the medical front and when I think on it more perhaps that is why I have been so quiet. A lot of medication got changed and I feared it not working. Or thinking it did and being proved wrong. Basically I feared looking stupid and that is a great place to start because my anxiety has been a real issue in the past twelve months. Again.

 

I cannot say when it began to creep up on me again. I think many would say I never got to grips with it at all but I certainly noticed a fall off the cliff where the fuck is my parachute change. Ahem. Exams are hard and I was coming up to the end of university. The Big Ones. My dissertation was crap. I knew that. I was ill with pneumonia while asthma I fought for years without knowing I had got worse and worse. I freaked out. I tried. I cried. I did my best. I guess that is all anyone can ask and that includes me of myself.

 

(I’m writing this knowing I’m going to link it to Steph to go LOOK I CAN UPDATE and yet I am anxious. English is her thing, guys. So there is a huge change she will see LOTS OF FAILS in how I write things and that makes me anxious which is ironic because HA. Not that I care overall cause it is Steph so boo bitch)

 

But the fact that I am so anxious at such a thing when I know damn fine she may tut and roll her eyes and think ‘what is this’ while never actually coming after me or hating me or disowning me says a lot. I mean she can’t disown me we’re going to Australia in six months. (Hahahahahahahaha fuck). Who gets tied up in their own chest over the idea that their friend might go ‘that grammar is not right’? Me.  Fail.

 

I said in a last entry moons ago that my Dr changed my medication. Basically it has meant that for  nearly a year I had no medication that helped me with my anxiety itself. I had medication that helped me with depression and if I am  honest it did a pretty shit job. If I am even more honest I stuck with it for as long as I did because a, it is what my mum uses and I thought if she can hope on it I should be able to (what?!),  b, it did so shit with my depression too that going to ask for something else seemed too hard.

 

For the last couple of months I have been on a new pill to aid my depression and anxiety and I think it works? I’m unemployed so anxiety and depression levels are relative at this point I think but at the end of being on fluoxitine alone I was having panic attacks nearly every day. Several times a day. I’d phone friends and I doubt I made sense. I tried to talk and open up but I didn’t know what I needed or wanted to talk about? I just needed them and that…doesn’t work over phone lines.

 

I take a pill every day to try stop migraines which it does until it doesn’t. Now when I get migraines they are far more like the symptoms you hear on the tv and read in books. Before I felt dizzy and banged into things and got tired and a million other things. Now I just …hurt. And I can’t be in supermarkets because their fridges and freezers make me want to claw out my own brain with the nearest blunt object which in most cases is probably a garden trowel.

 

Still I take anti depressants to make me sleep knowing that isn’t right but neither is not sleeping. If the pill that keeps you human is the one that makes you a zombie do you take it or neither or both and hope?

 

I joke I am the walking dead but I feel it. Setraline to stay sane. Trazadone to sleep. Levothyroxine to get up in the morning. Then that tiny white add on to stop my brain erupting within itself.  I didn’t update for ages because it would become like this. I blink and I can HEAR the image right itself across my vision. Across my brain somehow.

 

Yet  I did not start this over that…but I did not start this months ago because it would BECOME that. Odd world.

 

Endometriosis. You auld cunt. My implant went into my womb on the 14th April 2015. I’m the only one counting but I actually found the card today while looking for something else so huh. There you go. In theory that should mean that until the little coil needs removed I should have no issues. I already have issues though. 1: The writers of the card has turned the 2 into a 0 so the date it expires now reads 2020 when it would run out if used as a contraceptive this completely invalidating my agency as an asexual woman stating it will not be needed as a contraceptive and so it CAN remain in place until 2022. 2: Nothing stops Endometriosis the way it says it will.

 

I still feel cysts pop. Mini ones. The Drs know they are there but have no proof as they grow up and pop so quickly. I feel like a mad science experiment at all times. It is so demoralising as well because  I guess at least with periods a person can have a general idea of when the pain will stop. Or at least when it will fade into that achy discomfort. Now when my endometriosis flares it can last for days and there is no comfort of  ‘well by X I should start to feel Y’. The good thing about the community of people with this illness is that we band together. I am not strong enough right now to demand change to our treatment and more agency when pushing for treatment such as hysterectomies. Others are though and so that for me. Just like I did more before. When I am stronger in myself again I will take some of the weight back.

 

All spoonie circles are like that though. People think ‘community’ is just sitting there complaining about what hurts and why and sure we do that. We commiserate with each other but we also work together to better our situations whether that is sharing tricks to cope better or pushing initiations to make changes to better all of our lives.

 

 

So I guess this is a ‘hey i’m back’ and we will see how that goes. One day at a time.

be you

i’ve a million things to say and lots of word docs on the way to saying it but this week has just exploded with friends saying things and family and the media and all about how to find your way and stuff.

 

Be you.

 

Don’t apologise for being you.

 

Love you.

 

 

 

of gp changes and referrals

I booked a Doctor’s appointment for last Friday there and I wrote notes that took up an A4 page before I even stepped over the door. Now, my GP took months off last year and returned on a two day week pattern. It has been horrendous. My GP has been great for most of my life and he is very popular. Many people go to him despite him not being their GP. Like my mother! This means getting an appointment for him took weeks in advance before he reduced his hours. Now you can pretty much forget it. So when I walked into the surgery two weeks ago and asked for an appointment I declared I would take anyone who had an appoint in the afternoon of X Friday. I got a GP I have maybe seen three times in the last ten years?

 

What a world shift.

 

She was early! WOW! She got straight to the point. I received a new contour usb meter from diabetes.org so I was thrilled! I took along the relevant prescription changes and she got that done for me. (My reaction to this meter is another blog post in the words).

 

Then I brought up something that has been bothering me for months. I have tendonitis on the sole of my right foot because when I was thirteen I tripped over my CAT and landed on a nail that holds our elevated stereo speakers in place. As my luck would have it I managed to land in a way that put said nail straight through the middle of the tendon that runs up the centre of the foot. It was agony and I hobbled for months. It was a few years of ‘straining it’ that I returned to the Dr to be told it was tendonitis. Make sure all your shoes have a solid sole. That was my info!

 

Well, over the past few years I’ve noticed a similar pain in my left foot near my ankle tendons and wow did I deny it. My parents hate the notion of me getting more things diagnosed. Sometimes I think they believe I’m a  hypochondriac but I’m not, I’m just very unlucky and my hormone system is screwed across the board. As is common if one aspect of it goes wrong. Anyway,  it was getting worse and worse so I said I would talk to the Dr about it and what do you know, everything seized up on my way down. By the time I reached the surgery I could not bend my foot at between my leg and actual foot and I was hobbling in agony.

 

So the Dr got a good look and it took her 30 seconds to decided my trying to take pressure off one tendon had caused the other to give up. I’m not being referred to a food specialist for  them to more clearly assess the damage and tell me what I’m allowed to walk in.  I think my little dolly shoes are destined for the bin. Sob.

 

I then brought up labrynthitis. Most people get it and have no symptoms after 3 weeks. Some get reoccurring bouts of it. I am now constantly dizzy and with a sore head and nausea. I should have had a hearing test after I first got the virus and then been referred to a specialist at an Ear Nose and Throat clinic after my symptoms persisted. No one picked up on this! It was only with the help of another person who has had it that I learned more could be done. So I got a referral for that out of her too.

 

I’m struggling with sleeping right now (because citalopram wakes you up) and depression. She sort of blew up. I take 40mg of citalopram every night  and have for a few years. Apparently no one should be on such a dose for such a time. It is not healthy and could be the reason I have so many headaches. So she has increased my dose of trazadone (sleeping like a baby :D) that helps me sleep and is weaning me of off citalopram so the side effects don’t continue to bother me and I can get a proper antidepressant. Citalopram is very generic and treats both anxiety and depression. She says if anything she would rather medicate each illness alone than do this one pill approach.  I have to phone her any time I’m struggling to wean. I am four days in and fine though. I alternate 40 and 20 for a week and then it is 20 and 10 and me getting very frustrated trying to crack the buggers in half because she prescribed me another back of 20s and no 10s. Sob.

 

My family continue to insist I should get off meds altogether. They fail to think that I struggle with them so how on earth would I cope with nothing? Some people need meds. Get over it. For the ‘well we didn’t have them X’. Yeah and a lot more people were locked away or killed or hurt themselves.

review; branded by the pink triangle

 

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Branded by the Pink Triangle
by Ken Setterington

A review of the book detailing the gay community within the concentration camps. today, cause no one else will talk about them

<i>Before the rise of the Nazi party, Germany, especially Berlin, was one of the most tolerant places for homosexuals in the world. Activists, including Thomas Mann and Albert Einstein, campaigned openly for the rights of gay men and women, and tried to repeal the old existing law against homosexuality. But all that would change when the Nazis came to power and existence for gay people turned into one of fear. Raids, arrests, prison sentences and expulsions became the daily reality. When the concentration camps were built, homosexuals were imprisoned along with Jews and any other groups the Nazis wanted to suppress.</i>

I read this book last year and I read it very quickly because I simply could not put it down. This book deals with the treatment of gay individuals during the second world war within Germany. This sort of thing has been lost to history because in figures those detained for being homosexual were nowhere near the number of Jews systematically murdered. We are conditioned to think of the holocaust as simply the murder of Jews but that is simply wrong. The holocaust was a mass attempt at genocide against anyone that Hitler and his followers did not deem worthy of life. That included travellers, Jews, homosexuals, communists, political activists, anyone deemed too religious, eastern Europeans deemed less worthy, non-aryans…ie most people. To make the holocaust simply about Jews does a disservice to its other victims of which there were many, hundreds of thousands, if not millions. These victims were the ones that simply didn’t appear on records. We can only guess.

I decided to write this on holocaust memorial day mostly because it reminded me that I had read this book. Then I thought of how most of the documentaries and commentaries will focus on the main group impacted in the Jewish population. I was also outraged that any documentaries talking about it will not appear until late tonight. That strikes me as wrong.

I have a genuine fascination with the Weimar Republic aka the time in Germany before Hitler came to power. They had the most democratic constitution in the world and yet still succumbed to Nazism. I think anyone can see how that alone could be fascinating. But they also had a vibrant society that was so liberal before the Great Depression. Berlin was a hub of accepting people who hung out at clubs and cafes and could be open with sexuality.

I loved reading the memories of that and getting a first person point of view of just how that happened. Berlin was seen as the hotspot of Europe for people just wanting to be themselves and yet it became their prison. Even within the camps they were treated as less than others. Homophobia created a hierarchy of prisoners. No one wants to talk about that though. No one wants to think that maybe the Jews in the camps did something wrong. Stories from others out of the camps show it was a dog eat dog world or perhaps more importantly one dog eats and the other starves.

Not all victims were equal. People did not just forget their upbringing or politics when within the camp. And as the book says gays or those accused of being so were branded by the pink triangle. It is a humanizing piece. Those put into camps with that triangle have never received a pay off. Most of the time they are never even acknowledged. For the most part it is like they do not even exist.

And that is why I take this day to talk about them. Because today will talk about everyone else.