Living with a Chronic Illness – Ordering Meds

Every single time I order my Prednisolone they give me the wrong dosage ones! Despite having been on the exact same ones for most of my life!

It’s infuriating because they’ve wasted money as those wrong meds will not be given to another person. It means I then have to go to the GO for the thousandth time and sort it out!

Just organising 10+ medications + hospital appointments is like a full time job, which can be so stressful when I’m not being listened to continuously even though I know exactly what I take and when.

It may seem like a small thing to most people, but it gets beyond infuriating. It wastes everyone’s time.

I do see my specialist on Thursday, so I’m going to get him to write my GP a letter to say exactly what dose pills I am meant to be on and have always taken. Hopefully this will clear up the confusion, which started when I started tapering off the steroids last year, but I had to go back onto them when I had surgery in August.

Anyway hopefully this ongoing problem will get sorted soon.

Peace out

Zak

Living with a chronic illness – Hospital appointments

I’ve not written about my physical health for a while, but in the last week I’ve had 3 hospital appointments which was crazy! They’re like buses all come at the same time!

The first hospital appointment was Wednesday 16th Jan was my first physiotherapy appointment and it went really well. He gave me some exercises to do, which I’ve been doing most days. I know I need to do them everyday, but I’m feeling overwhelmed at the moment, so most days is better then non. He basically said that physio and insoles in my shoes will be something I need for the rest of my life because I am on the higher end of the scale for hyper-mobility, of which he said I score 9/9 which wasn’t really news to be. But I came away feeling happier, it seems like I will have continual care regarding physio, which isn’t something I’ve had before and its something I feel I will need for a while in order for me to make sure I’m doing my exercises and that its continuing to help with the chronic pain. He said where my muscles and ligaments are fairly weak from the hyper-mobility, these regular exercises will help strengthen them in hopes that is will help the main areas of my chronic pain, which is lower back, hips, knees and ankles. Overall a good appointment, my next one is in March so I have sometime to do my best with these exercises.

This Wednesday 23rd I has 2 hospital appointments in the same day, which made for an incredibly long, exhausting day.

My first appointment was at Christchurch hospital at 11 am and that was for Rheumatology, as soon as I got there I saw the nurse and she came over and said hello to me, I asked her if she needed a pee sample as I was bursting to go! and she said yeah sure that would be helpful and got me a sample point so I could go. I waited for about 10 mins for my appointment, as I was a bit early. Man its so bloody hot in hospitals! I was all wrapped up in a million jumpers as it was cold outside and had to take them all off when I sat down, for fear of boiling to death! When she had finished up with her previous patient she called me in. She’s quite a young nurse, I think she’s around my age (I’m 33) or a bit younger, she’s so easy to talk to and we talked about everything from my physical health to my transition. Which is great to have a nurse ask questions and actually be interested in me as a whole person. She’s going to ask me physio to write me a letter for the gender clinic re top surgery, as its something I forgot to ask him when I saw him. I said that the physio had said my posture needs correcting and I explained to her, my posture is bad because I often roll my shoulders in and hunch my back to hide my chest as I don’t bind very often and I explained that having top surgery would correct my posture because I wouldn’t have to be always hiding my chest. I asked if he could write a letter in support of top surgery as it may help push things along, she was very understanding and said it makes total sense. The plan is to have a dexa scan (bone density scan) to check my bones, as my last dexa was in 2016, so I’m due a scan. She also agreed its time to see how well I do coming off steroids, as I’ve been on them half my life and its time to see if I can remain well off them. The plan is to go from 5mgs to 4mgs for 4 weeks, longer if I don’t feel great. She said to go which how I’m feeling and then after that go down to 3mgs for 4 weeks and by then I’ll be seen by her again to catch up with how everything is going. I start on the lowered dose tomorrow, I’m a bit nervous, as I know its not going to make me feel so great to start with but I’ll stick with it. Overall another great appointment.

I got the bus into town and I had some time to kill and I was hungry, I decided to treat myself and I went to a ice cream parlour, where I had a Oreo waffle, covered in chocolate sauce, crumbled Oreos and toffee ice cream. I couldn’t eat it all but it was sooo nice and very much needed, seeing as I’d been up since 6:45am!

I got the next bus to Poole hospital and this was an ENT – ears, nose and throat appointment. My appointment was at 2:30pm and I got there 10 mins early and again MAN it was so freaking hot in there! They ran 50 mins late, I was so exhausted and getting a bit agitated because I was hot and wanted to go home. But it was worth the wait and thank god for our NHS we are so lucky to have it. This was a new ENT doc to me, she was super nice and easy to talk too and had clearly read my notes which was great. There were a couple of students in there, observing appointments, I love having students in my appointments because these young people will be looking after me when I’m older and if they are interested in specialising in rare medical conditions then I am definitely all for it! I’ve had meetings with rooms full of doctors, I’m always participating in studies where the hospital shares my tests results ets, I’ve spoken to many student doctors and nurses over the years and I think its really important for them to be observing and learning different aspect of patients that in the future will be their patients. I digress, but its an important point. We had a brief chat about my medical history and asked how I’m currently doing, as to which I said I’m doing well although I’ve had quite a blocked nose recently but I think that’s to do with the cold weather and going from hot to cold environments. She saw me at her voice clinic, so she could have a look up my nose and down to my vocal chords. It was pretty cool to see it on the screen, as she recorded it so I could have a look. She was surprised that I don’t have a hole in my septum, as that is often a symptom of my condition, which as a reminder is called Granulomatosis with Polyangiitis/Churg Strauss syndrome, so that’s good news! She was also surprised that I have no irreparable damage up my nose, vocal chords or wind pipe, despite the fact I’ve had my wind pipe chemically widened a few times in my late teens early 20’s. She said everything looks great and it shows that my condition has been well controlled over the years. She agreed to see me again in 6 months to touch base but if I need anything in between then I can call and see her sooner if I need too. Again despite the long wait, it was worth it.

I”m really happy with how things are going for me health wise at the moment, I have a great team of doctors looking after me and I feel listened too which for me is so important and I also feel involved in my care, which is something I’ve not had before, mainly because I was 14/15 at the time I of my diagnosis.

The long day didn’t hit me until Friday afternoon. Friday morning my mum came round at 9:30 am, she helped me sort out the curtains in the bedroom as I had just thrown them up years ago, they’re too long and I’d not pulled the string through so they were really baggy at the top. She showed me how to do all that which was cool as they look better now. We went to a cafe, for a drink and a scone which was nice. She dropped me back and I went for my testosterone shot at 12pm. After I walked home, I got the dogs ready to go out (didn’t leave straight away) and as it was nice sunny and fairly warm, we got the bus to Hamworthy park. It was such a nice walk, at one point I was sat on the bench watching scrappy running in and out of the sea and foxy just wandering about with the warm sun hitting my face, just perfect. We got back about 3:40, scrappy had to have a shower as he was covered in sand. I fully reclined both sides of my sofa, covered it with blankets, did up the hot water bottles and ordered some lunch/dinner. After I’d eaten a wave of tiredness came over me, I snuggled up on the sofa with the dogs and the cats and I think I fell asleep for about 2 hours. It was so needed, I’d felt exhausted all day but it didn’t really hit me till I stopped and that exhaustion lasted till Saturday.

Its funny I don’t always feel the effects of a long day like that, till a couple of days later. But I’m feeling better today, although that may change this week when I start lowering the steroids!

That’s it for now,

Peace out

Zak

Transition update – Week 32 on T

Today would have been T shot day but the docs didn’t have any appointments, so I’m having it done bright and early Thursday morning lol, 8:30am! Urgh, that’s still the middle of the night!! This is why I wanted to do it myself, so I didn’t have to mess around with apps and I can do it on the exact day its due. Even though I know it can be done 5 days before or 7 days after its due, it still gives me anxiety that its not being done on the exact day its due! But I’m weird like that, silly things give me big anxiety. I suppose its about control, its something I need to let go of a bit more and not let little things stress me out so much. A lot of it is because I often don’t feel like I have any power or control, so little things cause big anxiety. Man I sound like a lil weirdo but whatever.

My weeks been busy but its been really good. I’ve finally got rid of my chest infection, it only took just over 3 weeks and I’ve finished my steroids too, which is a relief! Although its been messing up my mood a bit, been feeling a bit emotional today but I think that was a mixture of things. I feel fine now, I had a nice shower and did some EFT (emotional freedom technique) on myself and it made me feel a lot better, much calmer and less emotional then I was, which is always a good thing. I know there’s a calmness inside, I just don’t always feel it. So I’m going to try and tap out all the intense negative emotions as and when they come, hopefully it will help me regain some control and things wont get so intense and overwhelming.

For some reason this week I am super spotty on my chest, neck and back, although I’m pretty spotty in those areas already but these last couple of days, loads of extra bloody spots have popped up lol! Its sooo hard not to squeeze all the ones I can reach, gross I know lol. Some of them are quite sore but I can’t reach them to put any cream or anything on them. Not sure what its all about lol, I’m hoping they calm down as like I said some are really sore, I’ve got a few on my scalp as well, they are a bit itchy and sore too.

My voice is slowly getting there, I’ve noticed today its a bit deeper which is cool, I said something earlier and I was like woah! who said that!! made me chuckle to myself. My T levels are nearly right I think, I speak to my GP Thursday about my levels as my results from the last bloods said they were borderline, not sure what that means, so I’m assuming it means that they aren’t quite high enough. So they may need to tweak the frequency of the T shot again.

My gender dysphoria and disassociation has been mostly ok this week, I’ve been feeling quite relaxed and calm where my body is concerned. But I’ve spent this week looking after myself and my needs, rather then everything else that isn’t really important. Which just proves how much self care is essential to my well-being, its something I struggle to do regularly. It is so noticeable when I stop basic self care, everything just goes off the wall and unmanageable. I’ve been taking a lot of really hot showers and it really helps with the disassociation and I can take 15-20 mins to just be totally in the moment, breathe and relax. It really works for me at the moment, it may not always work and may not work for others but at the moment its working, which is the main thing.

Well its gone midnight now and I better get to bed and I have my friends kids over again tonight and I’ll probably be up around 8:30 am, my mind is pretty awake so I need to wind down a bit before I can go to sleep

 

 

Week 32 on T.JPG

^ This weeks picture

^ This weeks video

Peace out

Zak

*Insert*Title*Here*

I don’t often write in between my weekly transition blogs, but I feel like I needed to write today, I got things I just need to get out and maybe it will help me make sense of everything.

It’s probably gonna come out a bit all over the place and scattered, but that’s how my brain is feeling at the moment. It probably won’t be strictly transition related but a bit of everything that happening in my life at the moment, so transition, physical health, mental health, family etc…

I can’t even remember the last time I just wrote a regular blog entry, must have been a while ago now.

I literally don’t know where to even start… Ok I’ll start with the good stuff going on, so I can get into the flow of things and unpick my brain as I go along.

My name change is all official now, which is really awesome and feels so good. I am now legally Mr Zak Dyllan Mills! Woohoo! I’ve already changed it at the bank and the doctors and I’ve written some letters too, they just need posting. It just feels really right and just the next part of my transition, I feel much more like me now. Which probably sounds weird as its just a name but for me a name is quite an important part of my identity and how the world views me and how I view myself. So yeah feeling pretty awesome about that.

Last Sunday my new little nephew Alex came into the world, weighing in at 9lbs 3! the lil fatty lol but he’s so damn cute. I already had cuddles on Tuesday with him, he was just so content just laying on my lap fast asleep, he’s so chill. Proud uncle to 3 nephews, which is insane! the eldest will be 9 this year, its just flown by so fast. I absolutely adore all of them.

Physical health hasn’t really been too great this year, I’ve had infection after infection. Over the new years I kept getting nose bleeds, I then had a sinus infection, then last month I had a ear infection and at the moment I’ve had a chest infection for about 3 weeks and I’ve had lots of really bad nose bleeds as well. So I’m not sure what’s really going on, but I went to Southampton hospital this week and he took some blood to see what was happening. As he didn’t want to up the cellcept and make me more immuo-suppressed just in case its just been back luck that I’ve been getting ill and not due to my Churg Strauss Syndrome playing up, but he can’t tell until he gets the results. I’m hoping I’ll hear about the results soon and I’mm also kind of hoping its just been a bad run of luck getting ill and nothing more serious then that. But when nose bleeds are involved I know its more likely to be my condition as nose bleeds were one of my first ever symptoms. I’ll just have to see what happens with all this… I am hoping its nothing serious, I’d rather not up any medication if I don’t have too.

My mental health has been a bit of a mixture recently, its been quite difficult to deal with and I know its made me a bit harder to be around as well. Its not really been the bipolar that I’ve been struggling to control, although fighting with the depression and bad thoughts some days seems like the easy part of it all. I’ve been really struggling with the gender dysphoria, it hits so hard and its overwhelming and intense beyond words. The slightest thing can kick it off and I feel like I have zero control over it, which in itself is kinda frustrating and a bit scary.

Its my chest that is causing all the distress, anxiety and stress. I want top surgery so bad. I’ve never liked my chest, its always made me feel uncomfortable and embarrassed. When the dysphoria hits, I feel so detached, I feel like a ghost, I just want to be as far away from myself and my body as I can get, so I just disassociate but then I find it hard to get back in my body again. It really effects my mood, it makes me feel so depressed and really agitated because I’m not comfortable in my skin, because it doesn’t feel like it belongs to me, its never really belonged to me. I know I have to do some work around acceptance of self etc, as I know surgery will not fix all the emotional stuff but it will ease it. But right now that seems like a big thing to work on by myself.

I’m already starting to stress about summer and the warmer weather, as I get hot easily so it wont be as easy to cover up while remaining comfortable. I’m already aware that its gonna cause me a huge deal of stress and anxiety and it may make me less likely to go out far, I’m already anticipating how I’m going to feel, be etc… So I don’t know how I’m going to handle that and get through it.

Not being able to bind my chest makes it all the worse, I think maybe if I could bind that would take a bit of anxiety and stress out of it, I’ve been still trying on the high impact sports bras as they were the most comfortable out of everything I tried but its still not comfortable enough, especially with my chest problems I experience anyway. Its just so fucking frustrating! and doesn’t seem to be getting any easier to deal with, but the longer I’m on T the worse its getting to deal with and most days I feel pretty agitated and anxious. Its not so bad if I’m just at home and not really going anywhere, but as soon as I’ve got to go out for any period of time, especially on my own then I feel so self conscious, agitated and anxious.

I feel like I’m stuck in a limbo, like life can’t move forward right now and I know I’ve stopped moving forward, I wouldn’t know where to go now anyway. I just feel stuck, waiting for life to start again but I can’t find the button. I know I shouldn’t be waiting for top surgery but that’s what it feels like, I feel like after that then my life can start going again, where too I don’t know. I know my life can be better then it is right now, but I don’t know where I’m going, what I want, what direction, what I should or shouldn’t be doing… I’m in a rut and I hate it. Desperately trying to find things that make me really happy and not much is making me as happy as before. I mean I’m not totally unhappy, but I know things can and should be better, I just lost the drive to find it, I feel lost.

Ok… so maybe I needed to write this a more then I really realised but feels good to get it all out, I can breathe now. Been feeling mostly ok today, as I’ve stayed close to home, I’ve only been out to take the dogs for a run. Have felt so so tired today, I’ve just been chilling and looking after myself. I also finished writing out my ESA forms, I just need to get my paperwork together and then Monday I can post it all off recorded delivery, so they can’t say they didn’t get it. But I’ll sort that out on Monday I think, gonna spend the rest of the weekend just relaxing and looking after myself.

That’s it for now, am getting hungry…bloody steroids lol! Gonna go cook myself some food, although I’d really love a take away but money is low.. so cooking it is lol!

Peace out

Zak

Transition update – Week 30 on T

Another week on T, I think I’ve been on testosterone for about 7 and half months now which is cool.

I had my peak testosterone blood test this morning, hate the fasting ones! especially at the moment as I’m on a higher dose of steroids for my chest, so I’m so hungry all the time. I can’t wait to come off them again, I should be finished them by next Friday I think.

Feeling good, nothing much to report really with the physical transition. I sent my deed poll back yesterday! So really excited about that, can’t wait until its all sorted.

I got a new nephew on Sunday which is super exciting! He’s right lil chunk, 9lbs 3! I’m going to see him a bit later, can’t wait.

I’ve got such brain fog at the moment because of the steroids, I can’t really think straight. My heads all foggy, its so frustrating.

I’ve not really been up to much, I’ve just been trying to get better, as I’ve had a really bad chest infection. It finally seems to be shifting now, which is good.

I did a Tai Chi class yesterday, which was really cool. I really enjoyed it, definitely want to find one locally, if I have the confidence to join.

All transition stuff is going well, I can’t wait for my first consultation of top surgery in July, it can’t come soon enough. Its the only thing that’s really distressing and I want sorted like right now. I may look into how much it would cost privately and see if I’m eligible for a credit card… because the wait is just so long. Its something I’m going to look into and do some research.

That’s it for now.

Week 30 on T

^ This weeks picture

^ This weeks video

Peace out

Zak

Transition update – Week 29 on T

This week I have some big news! But before I talk about that I’ll talk about other stuff that’s transition related.

This morning I had a blood test to check my testosterone levels, this is the trough which means that my testosterone levels will be at their lowest. I then had my testosterone injection done, which went well. Next Tuesday I have another blood test which will be the peak of my testosterone levels and from that they can work out if my levels are too low or high enough. I’m still not convinced that my levels will be high enough but I’ll find out next week.

Again no massive physical changes going on, other then my hair on my face, chest and stomach is getting darker which is really cool. I’ve still not had the confidence to start shaving yet but I’m in no rush. Voice is definitely starting to change, it sounds more noticeable to me now, so that’s pretty cool and others are starting to notice it too.

The gender dysphoria hasn’t been too bad over the last few days, that’s mainly because my mood has lifted a bit, which makes everything a lot easier to deal with. I feel like I’ve got a bit more positive energy going on. I felt a real energy shift on Saturday and I’ve been feeling really calm and peaceful, it feels so nice.

I’m ill yet again at the moment, I have a chest infection so I have more antibiotics and a higher dose of steroids. Hopefully it will kick it soon, I’ve had a high temperature, I ache so much and my chest has been really sore. I’m anticipating a bit of insomnia though being on 35mgs of steroids, hopefully it wont be too bad.

So the big news! which I have left till last on purpose. 9 years ago before I even realised I was trans, I changed my name to Dyllan. I wanted to change my name as I’d always hated my birth name, it never felt right, it never felt like it was me at all. I always felt disconnected from my birth name. I purposely picked Dyllan as its the unisex was of spelling it and I was so sure I wanted a unisex name, but I couldn’t tell you why I wanted a unisex name, I just did. Now it all makes sense as to the why I did what I did.

Recently I have been thinking a lot about my name and how I want to change it to a masculine name, rather then have a unisex name. Since starting testosterone and having physical changes to my body, I’ve been wanting to move away from everything associated with pre-transition. So I have decided to change my name to Zak, its a name that I’ve always loved and it was the name I really thought about a lot when I changed my name to Dyllan. My middle nephew Leo’s middle name is Zack, so it’s cool we’ll have that little connection.

I told my bro and sister in law the other day and they’re both happy about it. My bro said oh well least I can spell that! lol!!! and I’ve told all my friends and had a good response from everyone which is really awesome. I ordered my deed poll yesterday morning, I’m super excited and it shouldn’t take too long to sort out.

The only people I’ve not told yet is my mum and grandparents… But mother is never happy with anything I do in my life, so I know she won’t be happy. I’m not sure how my grandparents will react. But I’m already anticipating a negative response but in all honesty their opinion really means nothing to me. We have no emotional connection, yes we are family but they’re like strangers to me.

Anyway I’m super happy with my new name, it feels so good and feels really right. It feels like the natural progression of my transition, the next step. I feel really content and peaceful and I’ve not felt like that in a few weeks, so its a nice relief.

That’s all for now πŸ™‚

Week 29 on T

^ This weeks picture

Week 29 on T comparison pic

^ Can’t believe how different I look! so awesome

^ This weeks video

Peace out

Zak

Food diary – Update

I’ve not written for a few weeks, for various reasons. So I thought I would explain why and I think it would be helpful to me to write it down.

So I didn’t write last week because I was really struggling with binge eating and I think that was mainly down to my low mood. I just couldn’t stop it, usually I can recognise what I am doing and be mindful of it so I can stop. But I knew I was binge eating but I just couldn’t get on top of it like I usually do, for whatever reason. I just wasn’t in the mood to try a new food, the thought of it was stressing me out, however I am proud that I did try 5 new foods so far and I will continue. Maybe a weekly was a bit too challenging, as I am really realising I have such a bad relationship with food and I need to change my eating habits slowly and I think I maybe need to address the emotional side of poor relationship with food as well as trying new foods.

However this week I’ve been so poorly with a really bad sinus infection and it really knocked my appetite, mainly because I’ve been coughing so much and eating anything made me feel sick. I also just didn’t have the energy to even make a sandwich, let alone a meal. The plus side of this is that it has completely stopped my binge eating and I lost 4lbs and feel much better for it. Yesterday and today I ate dinner and have not as of yet ate more then I’ve needed. So I am hoping this short period has helped me get on top of the binge eating and get back into eating when I need to eat rather then eating all around the clock. But I’ve been put on a high dose of steroids, 40 mgs which can cause insomnia…check! and increase of appetite…which luckily as of yet I am being very mindful of what is going in my gob and I’ve not felt the increase of appetite…yet lol, there’s still time and if I do I’ll probably end up back in the cycle of binge eating but I’m going to try and be mindful and not just mindlessly eat without thinking. The mindless eating is my biggest pitfall and easy to get stuck in.

I managed to attend a LGBT mental health group I volunteer at today. It was so so great to be around humans! I’ve been by myself for most of the week and I’ve been really lonely, which is absolutely the worst when I’m poorly and not up to doing anything. Group definitely helped to just lift me, lift my mood and my spirit. I genuinely feel good and happy, I haven’t felt like this in a while.

Anyway, I’ll post again at some point, it may not be a food diary but I think I might update about life in general as it is at the moment.

Peace out

Batman

PIP Tribunal Results are in…

I had my PIP tribunal Tuesday afternoon, I had my awesome friend come with me. He came down from London for the day just to help me. I was so so grateful as I definitely wouldn’t have got through it without him there with me. He also treated me to ice cream afterwards.

J and I hung out all morning, we didn’t do much just watched tv and chatted mainly. It was nice to catch up and hang out, even if we did have to go do grown up things in the afternoon lol.

The tribunal itself wasn’t too horrific, it definitely wasn’t as bad as I thought it would have been.

There was a Judge, a doctor and a disabilities adviser, the doctor seemed to have heard about my Granulomatosis with Polyangiitis, which was good and the other two were actually nice. I didn’t feel too judged by them, like I thought I would, so I didn’t feel to awful when I left.

I didn’t get their decision there and then, as they said its a lot to talk about and digest so they wanted to take their time, so they sent it in the post which I received today.

I want to list once again what my medical issues are, I wont go into how they affect me as I just can’t go through that again.

Anyway I have:

  • Granulomatosis with Polyangiitis
  • Bipolar disorder
  • ADHD
  • Hyper mobility

I got awarded PIP but I only got 8 point for the Living component and NOTHING for the mobility component. When I was on DLA I was on middle rate care and mobility, my health issues have not changed, if anything they have got worse. So how I do not qualify for mobility is beyond me. It means I have lost Β£100 a month as well, I do still qualify for the severe disability rates on ESA but I do not now qualify for the free bus pass, so I am hoping my Social Services blue pass comes to me very soon, so I can re-apply for my bus pass.

I am not happy with their decision but I am not going to challenge it because I have only been awarded it until Feb 2018, which means I will have to do the forms again by September 2017. Which is absolute bullshit! My conditions won’t have changed in the next 12months I will still have them. But it does give me a chance to get as much evidence as I can in that time.

So as you can all imagine I am angry but I simply don’t have the energy to fight them any further then I already have.

Once again I have a raging sinus and chest infection, I saw a doctor today but she wasn’t my regular GP as he was busy. I asked for another steroid injection, she said she can’t do another too close, its got to be 6 weeks apart really. I asked about re-starting Methotrexate just until I get to Southampton hospital and she said no…But she did give me 40mgs of oral steroids which she said would make me feel better in 4 hours of taking them but it didn’t. I did leave a message with my GP but he didn’t ring, so I’m going to ring in the morning and see if he can ring me and get something sorted, because I am soooo fucking over this right now.

Anyway gonna wrap this up,

Peace out

Batman

Over did it – catch up

I’ve not posted for a week and that’s because I’ve been so busy, I haven’t really stopped until today. Its been great and I’ve been having a good time but I’ve totally over done it and I feel so awful today, so exhausted.

I’ll do a quick catch up of what I’ve been up too this week.

Wednesday – I don’t really remember much from this day as its so long as. But I remember I had to stay in for someone to come and lower my shower pole, so I can now reach it when sat on my shower stool. I rang up the RSPCA to get a voucher to get Harley Spayed and microchipped. I think I just relaxed and pottered about the flat, doing the housework and laundry.

Thursday – This day was SO long! I saw my bone doc in the morning and WOW that was a real shit appointment and I really despise her!

This was my FB status about it..

I really dislike my bone doc. She doesn’t listen and she doesn’t care! I asked for my whole condition/symptoms to be reviewed and she kept asking me what I meant… If I want my hyper mobility looked into I have to ask my gp to refer me to some genetic place in Southampton… She wasn’t really clear about this.

She’s still banging on about coming off steroids… So in a few weeks after my blood results today I get to start azathioprine and it that goes well then she wants to start lowering steroids again…

My bloods are all negative and have been for ages but it doesn’t explain my constant sinus infection, the chronic pain and fatigue…
And she just put the burst blood vessel in my finger down to steroids and again she didn’t even take a close look, she just glanced at it.
I really dislike her.

But I didn’t write that she wanted to examine me, which is fine and I am totally used to that. So I took off my jumper and jeans but she asked me to take my off so she could listen to my chest…I refused too as she can listen to my chest without me being completely undressed. She did listen to my chest with my top still on but that’s not the point, she was totally out of order. She’s knows I’m trans and she obviously has no understanding and no desire to understand. Needless to say my gender dysphoria was horrific afterwards.

After that I headed straight to group, which was cool as usual πŸ™‚

http://www.dorsetmind.org.uk/

I went and had fuzzy hair cut an styled, so I look much better now πŸ™‚ I always feel so good after a haircut.

Met L and Boo Boo in town for a bit and then took Boo Boo home with me. Got home, sorted out Boo’s stuff, played with him for a bit, cooked us dinner, took pups for a wee, played a bit more and then put Boo to bed. I just spent the evening relaxing and watching tv.

Friday – Albert had me up early, so we went into the lounge and I put frozen on for him and I napped on the sofa for a bit, I wasn’t ready to be up at 7 am! But after that I was totally ready and we both had breakfast, Frozen was put on for a 2nd time and then we both had a shower an got dressed.

Took the pups for a quick wee and run around, which Boo Boo had fun playing with the pups. Dropped the pups home and Boo’s pushchair and walked over to the park, where we played for about an hour. I had to then bribe him into walking to a shop I needed to go to, I said I’d buy him chocolate if he left the park.

We just chilled out in the afternoon, doing lots of colouring and watching Disney films, he really got into Tangled which is one of my favourite films. I love Disney so I didn’t mind spending all afternoon watching them with Boo.

Boo and I had dinner and it was actually nice to have dinner with someone, rather then cooking for just myself. I did have to encourage him to eat it though, as he’s two and a half now and definitely asserting his right to say no, I don’t like it! Plus his taste buds are changing too, he’s gone from eating anything to very little, although he will eat chocolate all day every day lol.

We chilled out after dinner, playing with his dinosaurs and cars. He then asked me to read his book so he could go to bed, it was so sweet. Again in the evening I just spent clearing up and then relaxing.

Saturday – Boo had me up at 7:30 am..wanting to watch Frozen again! While he was doing that I had a little sleep on the sofa, as I do not do early mornings.

Again he wanted a shower with me and when we got dressed we both had Batman t-shirts on πŸ™‚ Took the pups for a wee and a run across the road, so Boo had fun playing with them. He’s so good with the dogs, its so cute.

Boo and I had some lunch, I got his stuff together and cleaned up a bit. Then got the bus and dropped him off with his dad’s family, as L was still really ill and needed a little more time to recover.

I went over to see L and Harvey and as soon as I walked in Harvey was showing me his minecraft and what he’s been building, which is pretty cool actually. I took Arnie around the block for a quick walk and wee.

Headed home and while I was sat on the bus I had a migraine start…and I didn’t have any sumatriptan left!! While I was walking home, through town I nipped into the chemist and bought some sumatriptan, got in and stripped off, got into my pjs, took my Tramadol and got into bed. I hate migraines so much, all I can do is sleep when I get one.

I slept for an hour, I then had dinner, got a shower, got dressed into my new fancy shirt and jeans, took the pups for a quick wee and then E picked me up for J’s birthday party.

It was such a good night, I talked to loads of new people. I even got into a club without being asked for I.D which is great as I don’t have I.D lol!

Sunday – I got up quite early considering I got to sleep quite late. Did my usual morning stuff, got me and the pups ready and got the bus over to L’s.

We spent all day there which was cool, I went out and got some food shopping, I took the pups around the block for a wee. Then chilled out for a bit as I was so achy, probably because I was really tired. Then Harvey and I took the pups down to the park for an hour, he rode his bike as he wanted to show me how well he can do it now. So that was cool just spending some time with me and him, gave L a chance to have a lil snooze. When dinner was ready I sorted it all out. Afterwards I fixed the nob on her slow cooker as she’d managed to melt it…yeah don’t ask lol!

I think I left about half 8 pm, got home and jumped in the shower, got into bed and was sound asleep by 10:40pm.

Monday – I woke up quite early, ate a packet of jaffa cakes and got back into bed until lunch time…I totally needed it. Did the housework and laundry, took the pups for a wee. Sorted out my meds for the week, sorted out my list of what’s going on for the week. Then in the evening I went to the Breakfree trans group social. Which as always was a good laugh, even if it was just the 3 of us lol.

Today – I woke up this morning and I didn’t feel good, I hurt all over, I felt weak and tired, my nose was all blocked. So I just had some breakfast and went back to bed until lunchtime.

Dragged myself into the shower, then got dressed and took the pups for a wee but it started raining, so we came back and I got into my joggy bottoms, as I was still so achy and feeling delicate. Spent the afternoon catching up with X-files and Gotham, while I went through the box of Lego Harvey gave me. Most of it was just random bits and fake Lego, so chucked that out and I was left with a handful of real Lego bits. I then decided to sort through my Lego into bags of their colours.

I did go out for a bit to get electric and to pay my rent, I needed to stretch my legs a bit. Also went to Asda chemist to re-order more meds.

Just been relaxing this evening, had dinner, ordered my food shopping and caught up with emails and stuff.

How do I feel right now? I’m exhausted, I’m achy and I do feel frustrated with all my health crap because it gets my down so much. I feel ok-ish just a bit low but nothing I can’t handle.

Tomorrow I am meeting my Nan and Grandad for the first time since I wrote “that” letter. I’m a bit nervous about it especially as I’m physically not feeling great and not on top form. I’m sure it will be ok…

The mothership text me the other day and asked if she was seeing my for my birthday (which is next week) and I just said I don’t know and she said ok. To be honest no I don’t want to see her but she’s not getting the hint. Whatever though.. she’s a stress I don’t need in my life right now. She’s a negative influence in my life, that sounds awful as she gave birth to me, but regarding me emotionally she hasn’t put an ounce of anything into me. Yes I was always, fed, clothed and had a roof over my head but my emotional needs were never met. Anyway its just a complicated situation and I don’t want her in my life.

Little Harley is booked in this Friday to get spayed and chipped 😦 got to starve her from 8 pm Thursday night. Going to miss her, she’s not been away from me since I’ve had her.

Overall I have been doing ok considering everything I deal with on a daily basis, it is a struggle and it is hard. But I keep pushing through cuz daddy didn’t raise no quitter!

As usual I do have loads of pictures but I shall do that in a separate post.

Peace out

Batman