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NONE OF MY PETS ARE FOR TRADE
Not as active as I was.
Commander
Hi !

I???ve decided to finally concentrate on a goal I set last year!

I???m trying to collect 538 Spinestein Minipets...

And here???s why! (Long story ahead!)
Skip to the bottom of you don???t want the back story Okay
On the 1st of February 2017 I started getting bad lower back pain (I???d just turned 21) and I tried to get a doctors appointment for months with no avail. I had doctors ring me back for them to tell me to take painkillers, then stronger painkillers and then even stronger painkillers, all the while, never actually SEEING me. They all said ???It sounds like sciatica, should go in a few weeks???. The first time I actually saw a doctor was in October 2017 after sitting in A&E for 4.5 hours in complete agony.
The pain was getting progressively worse over time.
They signed me up for physio and overdosed me on meds Displeased
Physio didn???t help at all, often it made the pain worse.

I continued to complain to my doctors every week and they just weren???t interested at all. By the time it got to February 2018 (A whole year later!) I was no longer sleeping at night from the pain. I was getting 0-3 hours (in 20/30min bursts) every night and still going to work Monday-Friday. The pain was constant. From my lower back, all down my left leg and into my foot. All day, every day, no relief. And always worse at night.
Not only that, I was now bent over forward just above the hip where I physically could not stand up any straighter from the agony.

The doctors finally took some notice in March and in the April I was sent for a MRI. It came back inconclusive.
By the middle/end of June I was beside myself with pain and lack of sleep.
And it was then, when I told my mum I was going to kill myself because I couldn???t continue to live like that anymore because if I could look and live like I was and nobody in the medical profession cared after 16months, I was never going to get anywhere.
She brought me straight down to our GP and got me an immediate appointment by saying what I said and it was only then when I was crying to the doctor that I just want to die that they took any notice.
16 months of progressive pain and trying to get doctors notice.

They sent me to a specialist 4 days later who did another MRI and I got the results a few days later at work... I had a tumour growing off my spinal cord and I needed emergency surgery.

If they???d left me without surgery, I would have 100% ended up paralysed. If they???d slipped during the surgery, paralysed.
I had to make a choice between more pain and definite paralysis or potential paralysis/permanent nerve damage (or death, standard surgery warning). I was in the mind frame of I can???t live with the pain and if I end up paralysed through surgery, at least I???m out of pain.
On the 23rd of July 2018 I had my first ever surgery. They had to remove a bit of bone from one of my vertebrae to get access to the fluid filled sack surrounding my spinal cord. Then they cut that open and removed the tumour.
It took 5.5 hours to do the surgery and then afterwards I had to lay flat for 4 days before I could sit up slightly on the 5th day. Trying to eat and drink flat is hard so I didn???t manage to keep much down. Days 6-9 was filled with physio learning to walk again. It surprised me just how quickly your muscles fade!
And on day 10, I was finally discharged.

The tumour has been sent off for testing in the meantime and I???m happy to say that it came back benign Wide Grin

18 months after all this started my nightmare was finally over. I had no pain at all, I could stand up straight again and I could sleep!
I still have constant tingling in my left leg but it???s only ever noticeable when I actively think about it Smile

My surgeon was the first person to really take any notice and he gave me my life back. I cannot thank him enough. He came and saw me on the ward every day.
Words simply can???t express my gratitude.
At 22 years old and a cripple, he truly saved my life.

Lol so after that LONG story... 538 Spinesteins!

That???s how many days I spent in pain. 538.
Feb 1st 2017 - July 23rd 2018.

Spinestein - the tumour was in my spine and I have the username Stein! So it???s perfect!

I currently have 55/538 Wide Grin

Any donations would be hugely appreciated as I???ve a long way to go! But I???m also paying 30k each! Just let me know if you have any to sell!

Thank you if you???ve read all of that, I definitely went off on one a bit! XD

As great as everyone was in the hospital, I???ve done my stay and hopefully won???t have to do it ever again! Wide Grin
Commander75
Commander28 Jun 201915comments
Comments (15)
  • Cappygirl 75 CappygirlThat's a sad story. Its unbelievable how hard it is to get the medical care you need sometimes. I have been through the same struggle with mental health issues and with my children's autism. Help is hard to find and the right help is even harder. I'm glad you finally got what you needed and are pain free. 😊
  • Commander 75 Commander@Cappygirl it seems when you need them the most it’s almost impossible but you go down and half the waiting room is filled with people complaining about their cold :(:crazy: It really upsets me that I know I won’t be the only person missing out on the help I desperately needed. I hope you and your children are all ok and managed to get the help! And thank you, it’s so nice almost a year later to just have a small scar to remind me that I am actually ok! When I see it, it reminds me to just be grateful for what I do have now!
  • Cappygirl 75 CappygirlI totally agree. I assume you are in the US. I am in Canada and our system is "free". Which it is totally not. Health Care and Education are the 2 biggest costs for the government. So hardly free. I try not to dwell on the lack of services for autistic ppl. Its just the way it is. We make due. We are so early into our understanding of autism. Anyway, gl with your collecting. 😊
  • Commander 75 Commander@Cappygirl luckily I’m in the UK so we have the NHS... I can’t even begin to imagine how much it would have cost to have that kind of surgery in the US :shocked: It’s the same here for autism... there’s not enough understanding yet. I volunteered with children who have autism for a while in summer holidays. I was surprised the very first time to see how broad of a spectrum it is! Some only have it a bit and you can have full conversations easily and then others couldn’t speak at all... it was a real eye opener! Thank you again 😊
  • Cappygirl 75 CappygirlYes and whether or not someone can speak is only one part of autism. The complex processing, sensory and communication issues are not only different from person to person but change on a daily basis for each individual. So what a person can handle one day might be more than they can handle on a different day. Its truly exhausting being autistic. You have to work so much harder on most everything.
  • Commander 75 Commander@Cappygirl I can totally see why it’s still not understood, it’s so complex! One day though I hope people can understand and help 😊 I can’t imagine how hard it must be... and how hard it is for their loved ones too. They want to help but probably can’t always as, would I be right in saying, what might have helped in a given situation one time might not help the next?
  • Cappygirl 75 CappygirlYou got it. You have to learn about the person and how they communicate their struggle. How they show they are struggling or getting overwhelmed. And of course when you can talk ppl expect you to "advocate for yourself". Autistic ppl talk less as they get more stressed. Processing in the brain slows so its harder to cope and come up with the words to tell someone you are struggling. Anyway, I can go on forever about it. lol
  • Commander 75 CommanderThank you for helping me understand some more!! @Cappygirl 😃 And thank you again for sending me a Spinestein :blush:
  • Cappygirl 75 Cappygirl😊
  • Meggy 75 MeggyI'm happy to know you're okay now! That sounds like such a nightmare and proof that you are your own best advocate.
  • Commander 75 Commander@Meggy thank you!! And thank you so much for the Spinestein!! :thumbsup::blush::love: I’m a firm believer (even more so now!) that you know your own body and if something doesn’t feel right, it probably isn’t! 😊
  • Owlet 75 OwletI can't believe what you had to go through and I am so happy you are okay now! :thumbsup: Good luck with your collection!
  • Commander 75 Commander@Owlet thank you!! :blush: Love the username btw :thumbsup:
  • Ease 34 EaseReally glad to know that you're doing well now, you've come out to be such a strong person. I wish you the very best in life and with this endeavor too x c:
  • Commander 75 CommanderThank you so much for your kind words! :blush:@Ease
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