News- this could still be endometriosis.

Hi all, 26 speaking.

Huge news- spoke to a doctor about my pain. She immediately thought it was Endo, even after the laparoscopy result, and has prescribed me new meds and wants to talk about treatment options at my next appointment. I’m crying in relief. I don’t think this is bowel pain, I never have. I bet they didn’t find Endo nodules when they operated cause they were in there for 30 mins.

Please gods let me have answers soon.

26 x

 

(PS- looks like the Dutchman and I may have a house! He’s signing mortgage papers tonight!)

Bisexual relationships- how to get it right.

The girl that we dated sadly was the reverse of this. I feel like she never knew that she was being abusive, but she was damaged by her previously abusive relationship and the loss of her father when she was young.

 

It’s sad that bi erasure still exists. #StillBi

 

 

 

http://www.curvemag.com/Lifestyle/11-Ways-To-Be-A-Good-Lesbian-Ally-To-Your-Bi-Girlfriend-1424/#.V7399SVqZeY.facebook

Nice things ahoy!

Hi, it’s 15. I know we are meant to be working but we are too excited- today we get to fly out to see the Dutchman and go to our FIRST EVER music festival!

 

None of us has ever been to one and we have all really wanted to go for YEARS. It’s been sad quite often- due to dancing, I personally sacrificed weekends, evenings and holidays so I could try to be the best. We haven’t ever had the time or money, and it’s so exciting to think that we do now!

We will be flying out later tonight, meeting the Dutchman, and heading to his. I hope I’m going to be able to sleep, I’m so excited I feel like it’s Vegas again! Then we’ll load the car and head to the festival, set up camp… and the adventures will begin.

We have to be in a wheelchair again for the festival seeing as it’s hard for our body to stand up for any longer than about fifteen minutes without a lot of pain. We can push sometimes, and try and extend the time period, but inevitably we end up recovering for the ENTIRETY of the next day in bed. Boring if you’re at a festival. The chair will ALWAYS be a bonus.

I’m not worried about it but 26 is. She got really upset the other night and rang the Samaritans, and we all ended up talking to the lady on the phone for a long while. It was really awful for 26. She was just at her wits’ end, she is so triggered and gets so frightened of medical stuff. 14 and 19 are best at dealing with that stuff- I lack the courage, I get shy and forget what I’m saying. Plus, 14 and 19 are good at pretending to be 26. I can do it but it’s hard.

The woman from the Samaritans was lovely and eventually got 26 thinking about other things, like the wedding and the festival. I’ve promised her that whilst we are away we are literally just going to live in the moment. If she needs to, she can do it through my eyes, or anyone else’s. We’re here to help her. We also have a phone consultation as a pre-op on the 31st of August, then, after that… the operation will be round the corner. That’s why I want us all to just enjoy the festival uncomplicatedly and just go and have all of the fun. I think we all need a break from just being at home, unable to go anywhere or do anything cause we got told we weren’t allowed to drive (heart is being a butt still and has palpitations. Silly heart! Be a heart, not a butt!) and we are always in pain. The wheelchair should help us do what we want to do. We’re so excited that finally we get to be sociable.

 

At any rate, I am SO STOKED and cannot believe it’s finally here! I’ve really missed the Dutchman. Can’t wait to see him again, he’s missed us and I’ve missed him.

 

Hope you guys are having a great summer.

 

15 x

Surgery: Endo or something else?

TW: I get real about periods, pain, hospitals and gynae stuff. Stay safe.

 

 

So I (26) basically am just here to tell you what has been happening.

So on Friday, we went to the medical appointment. Nineteen was her usual badass self and took us into the appointment, braved the waiting room and then the actual appointment.

She went in, sat down, and the doctor practically started asking questions as she sat down! He asked her whether she had pain all the time, where it was, if it hurt to have sex… She answered everything in her usual nineteen way, a little bit flippant but truthfully. She let him know when the pain started and that she had been having problems with awful pain and bleeding for most of her life.

He was calm and just got on with the facts. He asked her if she had had any children. We don’t count the miscarriage as having a child, because she was never born, so she said no. He also asked her if he could do an internal examination but she said no, on behalf of all of us, cause we do that thing where we agree to it them freak out later. She decided it was better to keep us safe.

He was fine with that and then basically told us we were going to have a laparoscopy. I absolutely melted. I was so incredibly relieved! Nineteen kept her head and asked various questions, such as whether not having an internal exam now would cause problems and what would happen. The doctor explained that he could do th exam whilst we were under anaesthetic (a huge relief!) and that he would check to see what was wrong.

He thought it was probably one of three things- one, a chronic appendix, two, a twisted ovary (they can untwist it during surgery but if it’s dead, it has to go) or endometriosis.

Today, I rang the Endometriosis UK helpline to ask them some of my questions, such as will the heart stuff stop us from getting surgery? The lady on the helpline didn’t think so, but she did think that I should ask the hospital that. She reassured me that an anaesthetic is actually a fairly pleasant experience, and isn’t as scary as we thought. One minute you’re talking to someone, the next, you’re awake and in a different room. She explained that there might be some pain in our shoulder blades from the gas, and that they will write a report on their findings. I was encouraged to get a copy of that report- apparently it’s a right and we should be able to get copies of whatever we request fairly easily.

All that remains now is to stay calm and wait for the surgery. I have a list of things to ask but I’m pleased that we will finally have answers.

Massive thanks are due to the Dutchman, lovely as always, and to the friends and family who always keep us floating. Puppy, too, has been lovely. I also want to thank everyone who keeps on reading, commenting or liking the posts I upload- you guys are amazing.

 

The consultant thinks it’s endometriosis. Yet another huge diagnosis that may or may not be right. However, in my personal experience, I’ve been right about PTSD, DID and Bipolar. I was right about my back not being fully better, right about the scar tissue there and right about needing further physio to fix it. I kind of hope in one way that I’m wrong this time, but I don’t think I am.

 

At any rate, here’s to answers after fifteen long years of awful periods, baffling times where there was pain but no bleeding, difficulty in having sex and, since May, non-stop pain. It will be a relief to know what the problem is.

TW: More Body Image Blues.

TW: Stay safe lovely people, we talk about body image and eating stuff.

 

 

I looked down at the pan in front of us. Nineteen was trying to cook something for our tea, but we all felt exhausted, scared of the constant pain we all feel, and just not hungry. Nineteen felt disinterested. She didn’t want to eat because she was worried it would taste of ash, worried she’d get fat (like he used to like, love handles gave him something else to make fun of), worried she would just be stuck in this out of control body forever…

She was pretty much having a panic attack in front of a pan. I counted six pieces of pasta sitting there, the ravioli kind. There was more in the packet.

“Nineteen, why are you only eating six pieces?”

“I don’t think I’ll manage anything else,” she replied, her hands shaking as she picked up the packet for the sixteenth time. “I can save that for tomorrow.”

I looked at the pathetic amount left in the packet.

“Nineteen, just make the rest and don’t worry. If you can’t eat them now, we can always eat them tomorrow. They’ll be pre-cooked and ready to go then, no hassle.”

She agreed and I watched her drop them into the pot.

The Dutchman was on IM to us the whole time, telling us that we would be ok and he was there to help. I told nineteen to just add olive oil, salt, butter and pepper to the meal, but she was still worried that it wouldn’t taste good. The Dutchman said to make it taste good,so she added mixed herbs.

Sitting down to eat it, she was pleasantly surprised by how nice simple ingredients did taste. She asked me how I knew, and I replied that I had been making food for a very long time, and that experimenting with new things didn’t bother me in the slightest. Eating a little bit of something tasty was something good.

Nineteen told the Dutchman she felt out of control and eating is the only thing she can control at the moment. He reminded her that if she ate, she was controlling something. She was fighting an urge, which would control it. She hadn’t seen it that way before… Nor had any of us.

This morning I woke up in pain again. Getting up hurts, I swallowed my pills and headed downstairs, and looked at the various breakfast options. Not enticing.

Nineteen’s feelings are still pretty strong over food. When she feels threatened and out of control of her circumstances, she doesn’t want to eat because it feels wrong to let your body dictate what it wants you to do. It has been a struggle asking nineteen to let me make breakfast, but luckily she’s let me.

At the minute, we have lost about 3kg. I personally attribute that to being unable to eat properly for a while and not being able to exercise at all for at least a month. The heart arrhythmia hasn’t helped, and we feel tired, so putting on muscle has been next to impossible.

I hate being this skinny. If there was ever a time for me to feel triggered, it’s now. Looking at the unhealthy hollows my cheeks form, the knobbles on my knees where the patellae are sticking out, the nasty sticky-out cow bones of my hips… When cows are underfed, their hipbones look huge and pointy and anomalous. That’s how I feel.

Even nineteen doesn’t like our weight loss. She likes to be able to feel like she can defend us at the drop of a hat. Like this, we couldn’t even fend off a fly.

The younger two don’t like our knees. They don’t like the bones that stick out and look weird- they always hated that back when it was them. So, we all have our issues.

All of us are struggling with still being in pain, with no answers. We are hoping that the appointment with the gynaecologist on the 5th August will help… Otherwise, it’s back to the drawing board.

We all just hope that whatever this turns out to be, the Dutchman will still do his thing- that is, be there whenever we need him. He promises he will, and he’s not giving up. He has never given us a reason to doubt him before, so I don’t think there’s any chance of him getting sick of us being ill.

We are so lucky to have him.

All pain is gone. (TW-ranty)

TW- an angry rant from me, 19. Sorry about that. Stay safe.

 

So in a moment of madness, I decided it was time to push my stupid body. The one that disobeys me, hurts every fucking day, causes all of us endless anxiety and loathing on occasions. I ran up three stairs cause my heart had been behaving and BOOM-

It felt like I was going to faint. I just got to the bed in time. Black spots and white stars flashed in front of my eyes and my heart screamed bloody murder at me.

What the fuck was I thinking? I already pushed it too hard yesterday- I demonstrated (craply cause I can barely stand by the evening) roughly for two new kids, and it almost broke us. It fucking hurt. Fifteen took over and got us into the car (Dad picked us up) and we spent the rest of the evening trying not to think of how much it fucking hurt.

Now I run up the stairs… and Mum catches the tail end of my stupid experiment and thinks I am RUNNING AWAY from her to HIDE something.

Yeah. I’m hiding the fact that the dog was upstairs cause I can’t fucking stand being so godsdamn lonely in the house all the time.

That’s all, Ma, I’m not hiding blades or a knife. I’m hiding my feelings here right now cause no matter how hard I try to explain the fact that hoping for a fucking end to my pain is like a death sentence for our emotions, you don’t seem to get it. Perhaps you’re exhausted with caring for our nana, and you wish something would go your way. Perhaps you want something to change and for our pain to vanish, and for something to finally start being right about 2016. For you, it’s been a bust, we know… but…

Hope has been a dangerous thing to us. We hoped for a more understanding answer on that appointment with the consultant than, “Well it might be IBS. Here, take two medicines that may or may not help, stop taking tramadol and you’ll probably be totally fine.”

Sorry, but no. One does nothing, the other froze our digestive system like it does when we get migraines. Eating better has helped a lot with some of our discomfort, but the fucking pain is the same. Like knives in our stomach. Like something small and with too many teeth is clawing to get out through an ovary, the right one. I think we ovulated the other day and Jesus, that was rough. Agony through one ovary (the left) and searing pain along our left hipbone.

So no, I’m not hiding anything. No, I’m not cutting- god knows my body is in enough pain without adding to it. Yes, I can run- adrenaline makes a fine taskmaster, though a dumb one. I pay for my mistakes in pain, and that’s why I walk with steps like I’m terrified to wake the sleeping monster. It’s because that fear is real.

Days like this, I cling to the future because living in the present, with no hope and a lot of pain, is torture.

 

I want to run, I want to lift weights, I want to tickle my friend’s kids without the searing pain from bending over. I want to wrestle with the dog without the worry she will jump up and -splat- her paw will hit the ovary that’s still screaming. I want to actually feel normal when I go up the stairs as opposed to getting half way and struggling for breath.

 

I hate being this ill and I hate having no options for relief. I want someone to come along and take the pain away, but currently, for the pain to go, we have to get 26 to use her iron will to force it away.

 

Problem is, it just comes back to haunt us later.

 

Current listening for today.

 

That phonecall I actually made, and its aftermath…

I went into therapy feeling really really spacey. I had a head floating away into the clouds, a mind that retreated away somewhere safe.

Dr K noticed it straight away and asked what the problem was. I told her I had psyched myself up to call the sexual assault referral place, and she made sure with me that I was ok to do this seeing as we aren’t able to see each other next week (she’s on holiday). I said that the longer I left it, the worse my anxieties would get.

She sat with me whilst I dialled, encouraging me and helping me just by her presence. My fear was there but I pushed on through it and spoke to two separate people about my confusion and worry.

The receptionist and the doctor who talked to me both agreed that I need to talk to my GP about the problems with the pain and bleeding I’m still getting, but the doctor also said that she would get an independent sexual assault advisor to contact me and help me out if I decide to report what happened to me. They were both so kind and respectful, and believed me without question. The doctor also told me to contact them again if I felt upset or needed any more information.

Dr K was so proud of me and all of my fractured jigsaw-piece parts. The younger parts, fourteen and fifteen year old me, were both upset but ok with the fact that I was trying to get help and also that they were believed through me. I floated out of therapy feeling like I’d achieved something but wanting to curl up and sleep.

Tomorrow I travel along the country to teach. I have a train journey to master, two classes to teach, socialising and responsibility for myself in a station I’ve only recently had a panic attack in. I think I can do this. I will just be careful with myself, take a puzzle book, and try to sleep well when I’m there.

I feel scrambled still but I hope that I will feel more with it tomorrow. I am so proud of myself, but I’m tired too.

Thank you for supporting me today.