Health update/getting organised

So as most of you know yesterday afternoon I went to go and see my consultant about the pain in my back and my hips.

My mum is always being you don’t need to take a handbag with you I’ve got everything we need well somebody was happy when I had an array of snacks for her to choose from while we are waiting! Not to mention my kindle. It was like, I was the mother and she was the child!

I felt like I overtook because when we go to receptionist desks and they asked my address they immediately look to my mum instead of me and she uses recites it, not this time.

So me what I should and to see the consultant and basically what she said was that he was happy that my hips were healthy for somebody in their 20s with cerebral palsy who sits down all the time, my mum was worried I need a operation thank goodness that is not happening. and from his point of view he was happy that there was no information of my arthritis in my facet joints…

I explained to him the pain that I was getting was quite severe and that I can only bathe once a week and I will rarely go out after all despite, having a new wheelchair that hasn’t helped with the pain and neither has a new mattress. I was getting a bit frustrated and a bit tearful because I didn’t want him to think that I was making up my pain levels, it’s gotten so bad now that my care company keep track and have been emailing the GP to do something about it. So there was little he can do in his department so, I’ve been referred back to Iona Collins my spinal surgeon from 2016 urgently to see if the disc that hadn’t warranted surgery back then has deteriorated anymore (I have a sneaky suspicion it has, we all know our own bodies)

I’ve also been urgently referred to a pain clinic which in his opinion I should’ve been sent to a long time ago because now this is hard to admit but despite my GPs advice I’ve been topping up my morphine doses When the pain is extremely bad which is also very dangerous but it’s not as if I’m doing it because I want to get high I’m doing it because the levels the doctors prescribe don’t have any affect on my pain. (I only did Oramorph when I absolutely need it because it’s disgusting it tastes like nail vanish remover and I make sure to leave a gap every four hours so it’s not as if I’m swigging it every five minutes) so hopefully they’ll be able to find some medication that will help with the pain and myself and my mum reckons it will most likely be done in pump form.

So now it’s just awaiting game again so whilst there is hope and positive news, there is also despair because I have to manage with painkillers that don’t work in the meantime.

Right now I’m focused on getting organised. I’ve got two years with the bank statements digitally downloaded on my iPad and in separate files in order so that if I should need to send a PDF off it can be easily done. (This file which houses my two bank statement files for the past two years is also password protected – Smart thinking eh?)

Thanks to Mel my PA for my paperwork regarding things like my DLA, car insurance, medical letters it’s all in a nice tidy file with an index so when it comes to filling out forms for student finance it’s easy to find certain pieces of evidence.

Our next big thing is Mel, is now to take me to to appointments instead of my mum which is a big step for me because I like to have my mum with me but that means she has to take time off work so it’s time to put my big girl pants on becauseI need to start doing things without her.

Monday we have two jobs to do in our session; set up a diary to keep track of what we do during social hours, track my appointments, pain levels and important assignment date for when I start my degree at home. I’m also going to ring the housing office to see where I am in regards to getting a flat because it feels like I’ve been waiting years now.

Once we’ve done that, we are planning a trip to IKEA where we going to find some small storage shelves and a small desk ready for me to set my study space/office ready for September. The one thing I won’t be needing? Is stationary. Just a file, my laptop, my printer, dividers and some lined paper and also making sure that I’ve printed out the syllabus for the year and that’s in the front of my fire. We are on the hunt for some nice motivational posters as well – so if anybody can pointing in the direction of some I’d be truly grateful.

In the meantime I’m hoping it’s not a long wait to get some treatment for my pain because this isn’t the life I envisioned for my 20s. Fingers crossed and I’ll remember to keep you updated.

Lots of love

Rach

Advertisements

Health update… read the news about carefree and consequences and don’t forget to buy your copy.

So the injections that I thought were going to ease my arthritis aren’t going to happen. All this because my arthritis is no longer in my joints but is now in my muscle tissue I asked the doctor about steroids and she wasn’t too nice about it I even asked for diazepam and repeat prescription but all she kept banging on about was addiction.

Meanwhile I’m in daily agony. All that she says was she was going to refer me back to the original department where they can deal with me.She make me sound like a 20-year-old begging for drugs just to get high not to function.

I only found out because I chased up radiology by phone. When I said to the doctor about this she said ‘oh I was going to drop you a line eventually,’how long is eventually?

Myself and my mother are going down there some point this week to sit face-to-face to her and drive home how serious the situation is. She had no empathy even when I was crying on the phone, she did not understand how much this is taken of my life. I’m also reporting her to the general practice board because she was so rude and kept talking of me when I was trying to explain things, making me frustrated.

So whilst the specialists play tennis back and forth With what to do about my health I have a few Diazepam’s left, Naproxen which doesn’t do shit except make me tired and morphine that just turns me into a zombie or an itching, sweating mess.

When I know more I’ll let you guys know as this is the purpose of my blog. By the way my Ami flared up massively today so I couldn’t go on a picnic with my carer, I literally spent the day sleeping with a massive migraine.

But never mind I’m just focusing on selling my book and counting down the days until I see Michael Bublé. You need something positive and keep to going right?


Don’t forget the carefree and consequences is available to buy on Amazon. It even has its own dedicated page on here where you can read peoples comments and reviews. Some people like it because it reminds them of Paul’s Zindels ‘darling my hamburger’ It is set in the 1950s and has a similar storyline to mine. Did I also mention? Carefree consequences, is being turned into a series with the three books?

I’m not done with the Alexander family and their friends just yet.

Read the first one while you can.

Breakthrough

budDear followers,

I’ve been grappling with a bit of low mood and motivation and to be honest, making excuses not to go out.

Well today, I did go out for the second time this week (third day tomorrow for bingo!) and I bloody enjoyed myself.

When I got my arthritis diagnosis and was told to keep warm, I took that literally and put myself on lockdown just to avoid a flare. But it happened anyway.

After recent intervention I decided to go back to college in September to do a foundation degree course in performing arts and then go on to do my degree in performing arts a year later.

I’m also going back to dance class, shitty wheelchair or not. If I wait for adjustments and injections I’m going to be missing out.

Life is not a spectators sport.

Life in a wheelchair: A summary

Dear able-bodied people, this is the summary what it’s like to be in a wheelchair and I hope you never find yourself in that situation. But,if you do, be prepared to be the ‘inspiration’ to your friends, even strangers just for doing silly things like; taking a train ride without a ‘caregiver’. Of course you’ll face discrimination but of course ableism too and the list below is just a small insight:

1) When you take your wheelchair for repair, you won’t see it again for 300 years.

2) people immediately use singsong tone of voice when they see a person using wheels.

3) You always have to act grateful for help you didn’t need.

4) A shop isn’t accessible if it’s got a tiny step at the front.

5) People pat your head and bend down to you.

6) Don’t leave your chair in the sun, you’ll burn your bum when you get back in.

7) You will be confronted with the miracle in the alcohol meme and so called friends will find hilarious.

8) You always get the view of people’s behinds.

9) doorways being too small.

10) Ableism and inspirational porn.

At my mentors book signing

On this day my best friend gave me a typewriter; was the day I became a writer

The rest of thee photos show me in my wheelchair in New York City on a visit in 2014

All personal photos ©️ Rachel Marie.

I hope you all enjoyed this post and have learnt something from it. It is so easy to fall into these habits, people in wheelchairs are just people who want to get on with the day, not to necessarily be your inspiration or make you feel good about yourself if someone in a wheelchair is asking for help and doing it for praise or major props with friends and family. You don’t help someone because you feel sorry for them You do it just because you saw another person struggling to get through the day and needs a hand to make it better

You don’t get an instant helo around your head. Be aware of ableism, it can be very patronising and eeven border on bullying help us in the disabled community stamp it out by not doing the things on the above list.

Many thanks,

A Wheelchair user, who is also an author and has Chronic fatigue syndrome but she still remains to be bad ass with her humor and has a wardrobe bursting with vintage clothes… My friends think she has a shopping problem not just the vintage clothes for her on dying love for reading and needing a box to writing my friends think she has a shopping problem not just the vintage clothes for her undying love for reading and and need to buy notebooks to wwrite her short sttories in

By the way, my debut novel, carefree and consequence is available to buy on my blog for which will take you Amazon. The reviews speak for themselves. Available in paperback, hardback large print and, kindle. You don’t actually need a Kindle device to read this book you can just download it from your App Store. Or aask in your local library to order you a copy.

My second project is completing a list of writing prompts and putting them together in an anthology for sale. There are so many genres I can showcase then with this book. You can see my romantic side, you can see my funny side, you can see my spooky side, you can see mmy thriller side and you can see my serious side too. It will be a mixture of poetry and prose and trying to finish it by March 7 2021.

For now, go buy my book and see how you like my romantic side and love for the 1950s

New wheelchair fitting

so yesterday I had a wheelchair fitting. I was not letting the bloke leave until everything t was perfect. I’m also upgrading to a salsa quickie mini, plus shoulder straps so my spine stays upright.

I can’t wait, with the chair I have, I leave the house once a week.

I can’t wait to go back to bingo and spent two hours in Waterstones just browsing the bookshelves. It’s silly the little things you take for granted. I can’t wait to have my independence back and finally go places on my own for example, hour excursions to the shopping centre will simply people watching and eating ice cream at the beach on a sunny day

Can’t wait till it comes don’t worry they’ll be plenty of pictures on my Instagram for you to see:-)

Until then I’m promoting carefree in consequence which you can get on my blog and there are links for my various social media. My library is even considering let me do a book signing. I also have a local independent bookstore interested all I have to do is send them a copy of the book and sign the contract.

I hope you enjoy it and I hope the paperback quality is its absolute best because that’s what I want my readers. It would be really nice if you could leave me a review on Amazon as well ❤️

I got my medical shit together like a GirlBoss!

Today has been my ‘get-my-medical-shit-together’ day.

So guess who was overdue for a wheelchair review! Waiting for somebody to ring back with an appointment! (Honestly, their systems for following up appointments is rubbish, you end up doing the job for them.)

I’ve left a message with my doctor receptionist about the spinal injections because according to radiology he hasn’t sent a referral even though it’s in his dictation notes(?) – so, the referral needs to be typed up and sent again urgently as I’m not coping with medication alone.

When they come out to reassess my chair I’m not being brushed off until it’s absolutely perfect. It’s not right to be in pain and only tolerate your wheelchair for an hour.

My point? If you don’t hound and chase up things then you don’t get. Be a #girlboss/boy boss and get your shit done! Things aren’t going to fall into your lap.

I’m quite proud considering I’m woozy from needing morphine last night.

Bone scan

Hello readers!!

So yesterday I had my bone scan for my arthritis. I can confirm that I now know how it feels to have radioactive dye in me, being strapped down to a bed and rotated like a rotisserie chicken!!

I lit up like a glow worm on steroids. I now have to wait for my injections and fight with my GP to start anti-inflammatories… joy.

Who said life is boring?!

Fast forward to today and I’m in agony… surprise surprise!!

By the way, the radiology department needs to come up with a less frightening name than nuclear medicine, it doesn’t exactly put you at ease.

Apparently, my veins are thin and spindly.. great!!