Health updates - Summer 2018

And now for all the boring stuff. I'll keep it all as brief as possible!

Here's what's been happening since my trip to London...

The experiment 

On the advice of the London physio, my own little miracle worker decided to try and unlock my thoracic spine (which we believe has been locked since childhood). As this being locked is causing immense pressure and strain on my c spine (meaning that my head has less support and the neck is struggling to keep it upright daily as the c spine is doing so alone), unlocking it would help bring about some strength and stability. Maybe even decrease the neck dislocations.

She explained to me how this slow process would go. I would lie down on my front and she would gently touch along my t spine, encouraging the vertebrae to open slightly. There are apparently four stages to this process, although with my issues she was reluctant to even suggest that we get to stage three. She was hesitant, as she has never attempted this on a patient who dislocates/ has EDS, but as I was keen and London agreed it was the best option for me, she was willing to go ahead with the treatment.

We would start at stage one and build up, I would see her one a week to try and progress to the next level. It was somewhat experimental, and neither of us could predict the outcome. Firstly because, well, everyone is different, and secondly because she has never performed this treatment on anyone with complex issues. I could sense her fear, so I really appreciated her agreeing to proceed.

I lay down and she gently touched along my mid spine -tiny, little nudges. Not even taps. Muscles that hadn't been activated in years began to spasm as the vertebras were moved. Odd twinges along my sides, radiating from the spine. It was a strange feeling but not unpleasant. The movements were so tiny yet so powerful. I left that day with an appointment for the following week.

Unexpected side effects of the bizarre kind

Within minutes of leaving the clinic my gag reflex went into overdrive. I started making the strangest sounds as my body lunged forward, violently spasming along my diaphragm. It wasn't painful, but was annoying, and uncontrollable. As well as hilarious. I sounded ridiculous. Something almost goat-like. Bicky was in stitches. This was a very unexpected side effect from what seemed like a simple manipulation of my spine.

Health updates - Winter 2017

Howdy folks!

So few health updates...
(See previous here).

Head, Shoulders, Knees and Splints

As mentioned in the summer, I've started seeing a physio at last -one who knows a bit about EDS and willing to keep me on. Through her I was also put in touch with an occupational therapist, who was able to fit me with suitable to finger splints as well as a few other hand/ arm supports. The ring splints are truly amazing! I have so much more movement in my fingers, and they dislocate a lot a less. From typing, to even coughing into my hand, my fingers were honestly just crumbling and in a state of dislocation 24/7. So these have helped a lot. These tiny bits of plastic really do so much work. An exoskeleton of sorts. Next I need to inquire about something for my knee.

These little plastic things are a wonder of technology. Look at them there. How can something so small make such a big difference? Received these #oval8 #ringsplints from #occupationaltherapist a while back and they are simply amazing. I can write, type, lift a cup, with hardly any finger dislocations now. I'm in love 💗 #ehlersdanlossyndrome #EDS4IRE #occupationaltherapy #hypermobility #disability #disabilityblogger #dislocation

A post shared by ☾Kitty Colbert☽ (@kittypotpie85) on Nov 30, 2017 at 5:26pm PST

I also had a visit to the house to see what could be fitted. I turned down most things -I have issues getting in and out of bed but don't feel I require anything yet, I don't feel I need bars at the toilet as I have the bath one side and cabinet the other side so use them to sit down... The one thing I accepted was this beauty of a perching stool. The slopped design of the seat means that I can get far enough to the sideboard to chop vegetables, do the dishes, etc, but I'm also leaning on the seat comfortably. Perfect on days when I can't stand for long.

When the chronically ill wish they had cancer

Yes, That Heading Really is a Thing

I often hear people with chronic illness comment on how they almost wish they had cancer, so they could receive some real medical care and at least a doctor would take them seriously. It's usually more so the chronic illnesses that there is no actual, specific testing for (like fibro, ME, and so on) and so sufferers are made feel like they are making it up or that no one cares. They don't mean this statement in badness, and maybe I just understand it better from both sides as I, well, have lived it from both sides. Sure there are tests and assessments for dysautonomia/ POTS, joint hyper-mobility/ EDS and hip dysplasia, and the related issues that I have, but it is a fact that society as a whole cares far more about cancers than any other diseases. I'm not taking away from that, that's not a bad thing. Cancer can be deadly, after all. Some forms are even preventable, everyone knows someone who has had cancer or passed from cancer, it has so many forms and truly is an epidemic of great proportions. So naturally enough it is high profiled -and so it should be.

But to those who suffer from chronic illness and other diseases:
I get the frustration of being told -
"There is nothing I can do",
"I'm not qualified for your case",
"I'm sorry, I can't help you",
"Have you tried paracetamol?",
"You're wonky, you should be in pain"...

I get it, more than most people.

And so when I was diagnosed with cancer, sent to specialists who were able to help me, had a team of people looking after my care and side effects, I was honestly elated beyond belief. I remember during chemotherapy getting a really bad rash on my hands, very raw and dry. Pretty normal with chemotherapy. When the nurse saw it during one of my sessions she said "why didn't you tell me??" and gave me some cream to soothe it. I was stunned. Why hadn't I told her? I realised I wasn't used to being unwell and someone being able to help me... That just hadn't happened before. Over the years I had stopped telling doctors things, partly from the trauma of my youth. Being told, "crying won't make you in any less pain", and so on. It made me stop talking about it, especially to doctors. I was so happy by this minor gesture, that I wanted to cry and felt overcome. It was a simple thing but a huge realistion. My whole treatment was like this. I received the best of care and help with all side effects and issues.

I breezed through chemotherapy and radiotherapy with a happy attitude (my chances of survival were high, so that helped). It was often even a joke with my radiologist -she laughed at me in appointments saying I was her easiest patient to date. Never complained, never had issues I couldn't handle. The chemotherapy nurses thought I was great too, and I used to laugh with my hematologist who also seemed a bit stunned by my upbeat attitude and eagerness for any treatment they suggested. Do chemotherapy and radiotherapy have side effects? Yep. But only the healthy are so privileged to be stupid about treatment that is life saving. I was simply elated to receive medical care for something -the fact that it was cancer should have brought me down, but I was honestly really happy.

That's not right. Someones general medical care shouldn't be so bad that having cancer was almost a relief. In hindsight I realise how horrible that sounds, but I just truly appreciated having regular doctors and ones that could help me.

So to everyone out there who has posted a meme in many of the chronic illness groups that I'm in, about how you almost wish you had cancer instead of the illness you do have -I get it. You are, obviously, in TOTALLY bad taste, lol, and you should reeeeeally know this. But I get it. I also get bad taste though, in fairness.

Oh boo-fucking-hoo.

To Dublin hospitals, with love... Etc.

As many regular readers will know, I have not received correct medical care (for any of my ailments really, which are mostly linked somehow, but first and foremost for the hip condition present at birth) because...

A.) Where I live the local hospital is basically closed (no A&E, they borrow equipment and staff from other hospitals, etc.) and the other "local" hospital is incredibly understaffed, underfunded and under-equipped in general (It is the main and only hospital for a very large populous, also).

B.) I was born in 1980's Ireland -That's like 1950 everywhere else, in relation to medical care (and of course in relation to other social issues: such as owning a vagina, enjoying the relations of someone of your own gender, etc., etc., ETC.!)

C.) I do not "scream loud enough"/ I have been incredibly unlucky (referrals going hay-wire, doctors not admitting fault at my birth, etc.) / I avoided doctors for a huge proportion of my adult life/ and a combo of the usual Irish "sure it'll be grand" inside of me that prevents the "screaming loud enough".

And you may also remember that I've recently sent off my referral forms to Cappagh for the much needed hip surgery that I should have probably started years ago, after advice from a lovely, fellow Irish "hippy" that I met online... Well, it turns out,

From neuro to zero

As long-term readers will know, I was attending a neurology clinic in Beaumont hospital... Well, kinda. Over three years I had about four appointments. Extremely slow, asked the same questions each time and with... well, lets just say the term "neurologist" is used quite loosely here in Ireland... Rather than repeat myself too much, here's some Facebook posts and links on the subject:

⚚ Click here to read about my very first neurology appointment ⚚

⚚ Click here to read about my second neurology appointment ⚚

I don't think I've really any other posts detailing them... the third appointment was not only quick, but a disaster, and not something I really like to discuss:

Firstly, the absolute prick, gawked at me when I entered the room, like a bully in the playground staring at the cripple kid -"What's the cane for??" he asked, sounding grossed out (seriously!). Like he hasn't seen a disabled person in a neurology clinic before. 

He hadn't looked at any of my notes and instead a few minutes later asked, "what's wrong with you?" -again, sounding pissed off... I replied that was the reason I was going to these appointments (duh) and hadn't been fully diagnosed yet (except the birth defects, obviously). He then got really flustered and

"I'm not qualified for this" -A tale of a fragmented and centralised health system

Chapter 1.

The Clicky Hip That The Doctor Missed 

Once upon a time, there was a girl, and this girl lived in a land of infrequent and inconsistent health care. As the girl grew, she slipped through the gaps -Being told treatment was too late, there were other issues at play, she was "wonky" and they weren't qualified to help... Just beyond this place, in various reaches of the further land, many children with similar issues, and many adults too, were receiving regular health care. Surgeries, rehab facilities and specialists galore. They lived quite a different life because of this... It was only at the age of 30 that the girl finally realised the truth. The truth being: National healthcare was a lie; her circumstances had resulted from her address.

I have always had hip dysplasia. Always. Doctors may have thought I was a dumb child, so referred to it as being "wonky", or being "slanted". Many hear of it and comment "Oh yeah, clicky hip I think it used to be called?" and generally follow that up with how it's no big deal, loads of babies get it... etc., etc., and this can be the case. When found at birth or shortly after, a harness is usually fitted. Annoying for the parents and child, but extremely vital for the child's correct growth. The issue is that the hip, usually either in the womb or at some stage during the birth, comes loose of it's socket. Generally treatment begins straight away -with a harness, regular check ups and x-rays and possibly surgery starting around 2 years of age, sometimes before, depending on the patient. Some don't need any surgery or just one surgery, others need several surgeries, throughout their life spam. These surgeries are to help the hip be more stable, to save the hip from replacement for as long as possible. This can include strengthening the joint and deepening the socket so the hip will sit better in place. Now, without this treatment -as in my case (as the doctors refused to even look at me until I was older and walking funny/ limping)- the body creates