Looking for Guest Bloggers Please!

guest-blogging

 

Hi folks,

I am still on the lookout for guest posters for this little bloggie, I would appreciate hearing back from anyone with or in contact with a chronic illness. Patients, Partners, Family, Friends, Carers, Therapists, Doctors, anyone who would like to take part. If you know of anyone who might like to, please share this with them, thank you!

It can be completely anonymous or open, whichever you prefer, please just follow the steps below to take part and I really look forward to hearing from you 🙂

Also, a very BIG Thank You to those who have submitted something already, I hugely appreciate the efforts, thank you 🙂

——— Wanna Be Part of Guest Blog Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

 

 

Lette 🙂

Ambulance Time Once Again!

On August tenth we had to call an ambulance yet again!
I had been in bed for weeks at that stage nursing a savage pain on the right side of my abdomen. This wasn’t the first time it has happened, and probably wont be the last! It got to a stage where I was trying to manage the pain myself at home, trying to avoid going into hospital, but I had to face facts and call it as it got too bad to manage on our own this time.

The Ambulance arrived promptly and began to tend to me. They were a crew of two, Male and female, and were excellent. Friendly, Professional, funny easing the mood when needed and seemed to take a genuine interest in what both Keith and I had to say and contribute.

Unlike the last few ambulance calls, this visit from them wasn’t rushed. It was calm, sedate and gave us time to properly prepare to go into A&E. While they took their time trying to locate a vein on my foot, Keith ran upstairs to the computer, got ready and printed off an A4 sheet with simple information on it about me and my condition, highlighting the main issues I present with, medication I am on and what would be needed when first admitted like fluids, Pain control and Catheterisation, etc.

The reason for this sheet was because through previous experience we have found to be constantly repeating ourselves while giving out my information to different people and yet only parts of the overall story get heard by all different people and nobody has the full story! This time we  said we would try getting this sheet in as a common denominator of information in my files so that everyone will be literally be on the same page regarding my care and see what happens. It was worth a try at least.

After getting a vein in my foot and administering some morphine for pain relief, we were eventually ready to go to the hospital and the ambulance crew were brilliant with everything as well as taking on the information sheet, which they said they thought it was a fantastic idea and wished more people were that organised!

13886347_10206340743588654_3510472488398338550_n

We quickly made it to the hospital, after getting more Morphine on the Ambulance, I was brought straight into the A&E main area, Thankfully I wasn’t rushed into Resus at any stage this time, it was calm and sedate and a far better visit this time round.

I was delighted to hear back from the Female paramedic that she passed on the sheet Keith had given her, to the triage nurse and that the nurse also commented on what a good idea it was to have all the main things highlighted on one page where everyone can see it. She said she would put it in my file so that all the doctors would see it too. So far so good for our little A4 sheet!

While waiting around for a short while, waiting on the triage nurse to find a place to put me as it was busy in A&E that day, The Paramedics were chatting to me and told me they knew some student and new paramedics who were doing papers based on me for some exam that was due the next week! Morto! I found it funny that they would pick me based on my rare or under diagnosed EDS condition or as I like to call it, ‘my awkwardness!’ :p

I once again had terrible trouble getting veins in me, doctor after nurse after doctor tried and failed and it started getting really sore. The vein the Ambulance crew had gotten was already failing just a few hours after it was put in, my foot swelled up  and they were worried as they really wanted to administer fluids and iv meds so they wanted a vein soon. Throughout the following week while in the hospital, this continued. a vein would be gotten and it would fail almost immediately until in the end the anaesthetics team had to be called and they had no trouble getting a vein and thankfully now a note has been put in my file to say that only anaesthetics are to place a cannula on me and no one else, so hopefully all the prodding and poking will come to an end now.
13892330_10206343306092715_7155029115265373122_n

13873036_10206349673611899_3884711729051176394_n

After spending no more 24hours in A&E this time around, I was admitted to the surgical ward. While in the A&E I had all the usual tests, xrays, scopes, exams, the usual trouble of about 50 different doctors trying to get a vein after a brief moment of being cocky and saying something like, “Oh I’m good at this, don’t you worry”, or,”Oh really? Bad veins, huh? well, I like a challenge!” and then just end up being unsuccessful anyway! That always provides me with a giggle especially towards the cocky ones who think I wont post a problem, cha! Say that to me after 20 mins of trying hopelessly! :p Being admitted after 24hours was quick though, considering that I have often had to wait over 46hours before.

I always like being admitted to the surgical ward. Not only does everything seem to be more up to date and cleaner, but Compared to the medical wards, The mood on the ward is generally brighter both from the staff and the patients. The Nurses seem to genuinely care, are not as dismissive as others I have encountered on the medical wards. They get upset when you get upset, they don’t like to see you in pain or discomfort and as much as they are able, they won’t keep you in pain for long and will treat you asap when they are asked to, a lot of the time, they don’t even need to be asked, they will notice themselves and will get you what you need to help ease your discomfort. Also, the electric beds are well cool! :p

I saw My Surgical team the next morning bright and early and they took the situation serious when they saw I had lost over 3.5 stone with the nausea, vomiting and general pain and discomfort I have been having with my gut issues.

As well  as my pain team to cover my Occipital and Sacroilliac joint Nerve Blocks which were due once again, They called in a dietician, a tissue viability nurse to talk about any difficulties I may be having with the chair, thankfully theres nothing serious going on there but she wanted to refer me to a Dermatologist for a small bit of irritation caused by the chair that was easily sorted with some long term antibiotics (starting with an 8 week course and if it needs to continue after that it could go up to 16 weeks), will just have to wait and see how it works. Then they wanted to get a serious OT assessment for me as my own local OT never properly assessed me for manual chair or a bed, given my situation, these are the two basic things my surgical team wanted to be covered while I was admitted.

The Dietician was concerned for my weight loss compared to my height and prescribed a high fiber, high calorie diet as well as Fortisip Calorie drinks to take twice a day along with my usual daily food intake to help at least maintain my current weight if not try to increase it. Sshe also prescribed a new tummy med to take with the other ones I am on to try and help with the nausea and vomiting as well as to try and increase appetite. So I have now started these and I was thinking of doing quick video reviews of the different drink flavours on offer, if you are interested that is! Let me know and I will do it if you like 🙂

14117688_10206454515512881_1228631297097725236_n

Throughout there was non stop testing to find out what was causing the pain in the right side. Xrays, Ultrasounds, CAT and MRI scans, Scopes, blood tests, you name it, it was done.

In the Ultrasound Room!

In the Ultrasound Room!

One outcome is that they have ruled out any Gallbladder issues. There definitely seems to be Sphincter of Oddi, Severe Gut Dysmotility and Neurogenic Bladder Dysfunction problems, as well as a large and painful Lymph node on the inside of my right hip which is causing a lot of pain too and is currently under investigation, all these are contributing to the pain as well as the Ehlers Danlos Pain itself, but they have ruled out Gallbladder and Appendix issues, which is good!

I had 2 major cardiac events while I was in, though I had been battling low Bp all week, these events were the opposite, they came out of nowhere in the middle of the night, they were raging high bp and very fast heartrate, the ecg showed some abnormalities but thankfully they didn’t stay long (about 2 or 3 hours) and after they administered some medication to lower my bp and hr, I seemed to return to my regular low bp self, they were scary though as the pain in my chest when it happened was frightening and I was soaked through with a tempreture. The nurses seemed concerned as Long story  events came out of nowhere. Thankfully though after a few hours I returned to normal and could get some sleep.

Long story short, I got to see everyone that was called for me except OT. The final team was the pain team with the good professor who loves to give injections and this time was no different! He administered my usual Occipital and Sacroiliac joint nerve blocks under ultrasound which he did at my ward bed, he had a little portable ultrasound machine or at least that’s what it looked like and he went for it there and then. The pain team in conjunction with the anestetic team said that I may have chronic piritonitis ( information or even tearing of the abdominal lining that holds your organs) this is still being investigated and will continue as an outpatient appointment along with all the other teams I had to meet while I was in.

The surgical team try everything they can and they are so good to want to learn but they still are not sure exactly what is causing the severe pain and weight loss. I had mentioned to them about a Gastroenterologist specialist in Cork university hospital who is very well up on EDS and speaks regularly as well as trained under Prof Aziz over in London whom I hope to see as soon as i am able to travel. They said go to see him, just to see if he can help and my surgical team said they would be delighted to consult with both him and Aziz going forward as they are of the mind that more on the overall team to help me then the better!

In the meantime my team wanted to bring my case up at an EGM (emergency general meeting) where the head consultants and specialists of a department get together and discus special cases at a count table meeting so that other people’s views and suggestions can be taken on board, then once they have news they  will call me for a new outpatient appointment or send me for further tests if required.

 Unfortunately the OT never turned up and there were questions as to wether she would turn up anyway as she usually only sees Stroke and Neurology patients so my surgical team along with the head nurse on the ward rang her boss as well as had to write a letter in order to argue the case as to why they felt I was a special enough case for her to make an exception and come and see me, alas I was left waiting all over the weekend just to see her and she never turned up so my team decided to send me home at this stage with some new meds and a ton of outpatient appointments and they would follow up with her to get me a much needed appointment as my local OT isn’t really doing what she is supposed to do. 

In the meantime I have made a new appointment to see that Gastro specialist in Cork, his name is Akbar and I have heard great things so I really hope he can help. That appointment is on the 20th of this month (September) and of course I’ll fill you in on how that and any subsequent appointments go.

For now, I’ll just chill and try to recover 🙂

Thank you as always for taking the time to read.

Lette ( the fainting goat!)

Finalist of The Littlewoods Ireland Blog Awards 2016

Littlewoods-Blog-Awards-2016-Website-MPU_Finalist

I am delighted and so proud to announce that I just found out that The Irish Dysautonomia Awareness Blog here has made it as a Finalist in The Littlewoods Ireland Blog Awards 2016 under the Health & Wellbeing Category! 😀

Screen shot 2016-08-31 at 14.37.27

I never imagined we would even make it to the Shortlist when we did, but to make it as a Finalist? I can’t tell you how excited I am about this, and I have YOU, yes, all of you reading this, to Thank for making it this far.

This Blog is all about raising awareness of these under diagnosed conditions, and having people check out the blog for judging means that even just a few fresh eyes will see the blog and may learn something new that day about a condition they may have never heard of before, if that alone is all that is achieved from this then I am absolutely thrilled. I can’t believe we have made it this far, I am so happy! 😀

Thank you all!! ❤

From here, this Finalist List will now be judged by a panel of Pro Judges (Those who know the industry well) and no open voting this time. That final list then will be the ones that go through to the awards to possibly win.

I am utterly thrilled we have come this far and even if we don’t go any further, I couldn’t be happier with the outcome so far. 🙂

Also, I would like to take this opportunity to extend a massive congrats to Catherine Colbert of The Cripple Baby Blog, she also made it as a finalist and Blogs in the same category about Dysautonomia and related issues too! Nice one Lady! 😀

And of course, congrats to everyone who has made it this far in the Awards!

Once more, I can’t thank you all enough for your votes and support, fingers crossed this may go further, but if not, I think we did good! 😉

Cheers, I’ll keep you all updated as I find out more, Thank you so much for reading,

Lette (Fainting Goat)

Shortlisted? – Was Not Expecting That!

13920954_10206381254801409_5463230625227173459_n

WOW!! So in the last week a lot has happened.

I was admitted to hospital on Wednesday the 10th after a few weeks in bed, nursing a savage pain in the right side of my Abdominal area. I was released yesterday after a really productive week in! I will do a separate blog post highlighting what happened, but this post is about something most unexpected to me! 😀

I am delighted to announce that on Tuesday the 16th of August, I got an email to say that Irish Dysautonomia Awareness, had made it through to the Shortlist of the Littlewoods Ireland Blog Awards 2016! 😀 YEAY!

Screen shot 2016-08-20 at 14.15.33

Public Vote:

So now the voting begins and this is where I beg for your votes! –  Well it begun on the 17th and runs until the 23rd but I have missed out on a few days because of the hospital stay.

The public vote opens at the Shortlist stage, and accounts for 20% of your mark (80% comes from peer judging).

If you would be ever so kind as to click on the image below and hit the Vote Button, just be aware It will open in a new window or tab. I would be eternally grateful! 😀 It will ask to verify your vote with giving an email or signing in with Facebook, this only takes a few seconds, so thank you so much in advance.

Please Click Through Here To Vote

Please Click Through Here To Vote

Remember, this is not about winning, and completely without trying to sound humble I don’t expect to get anywhere further, but to raise awareness of this condition through opening this blog up to even just a few more people, would be fantastic for all of us. Thank you!

Lette – Fainting Goat =)

A to Z of Ehlers Danlos Syndrome: A is for Autism

The A to Z of Ehlers Danlos Syndrome!
A great idea to highlight and spread awareness of EDS during May, EDS Awareness Month.

Sharing from the wonderful ‘Autistic Zebra‘ 🙂

Please be sure and click through to any other sites I may reblog, throw them some friendly support 😊💜

autisticzebra

May is Ehlers Danlos Syndrome Awareness Month. For this month, I’m goingto write an A-Z, discussing a different topic linked to EDS each day. I’m going to write about topics that effect me personally, having the Hypermobility type of EDS, so won’t be covering topics more common to the other types, such as Vascular or Classical EDS, though there may be topics which overlap these types. So, to kick things off, I present:

A is for AUTISM:

Autism is a neurological difference that is linked to EDS. Research on the links is ongoing, with not much published on it yet. Anecdotally, however, the link does seem to be there. A lot of parents with EDS have autistic children. Lots of autistic people I know have also been diagnosed with EDS or Hypermobility Syndrome. And lots more are beginning to assess their various symptoms and are starting towards the route to…

View original post 122 more words

Stronger Together – The International Future of EDS

Ehlers-Danlos Society Youtube Video Published on Feb 1, 2016

Lara Bloom Eds introduces the new The Ehlers-Danlos Society previously (EDNF.org) and talks about the upcoming New York EDS Symposium, the first meeting of medical and patient experts in this area for over 20 years! Hopefully it will bring international change for the better for those of us with EDS. Thanks for all your hard work Lara and the Ehlers Danlos Society.

 

Rescheduling Life! – I don’t want to, I have to!

12552733_10205055767745061_6682798959552846822_n

*Sigh…

Lots going on as usual but the past couple of weeks, health wise, have been terrible. I have had to reschedule so much and it’s a constant thing now. I try (more like hope) to plan for something, get excited the couple of days before if I am at a base level of sick that I can live with but then at the 11th hour I have to cancel because my health has decided to go batpoop out of the blue!

Just this morning I had to let someone down having agreed to take part in something (voluntarily, social network wise) that would have given me, and you as the readers that interact, an incredible opportunity to raise awareness of Dysautonomia, EDS, all the related conditions and rare diseases in general. It was supposed to start Monday, However, given the closeness of nearly calling an ambulance on and off over the past couple of days, it would have been really crappy of me to take something on that I may not be able to fulfill so I had to step down for now. It broke my heart to do it too, but hopefully I may get another chance.

This past week, last Sunday, I had decided to go and support a couple of friends at ‘The People’s Park’ where they had a wonderful Art Performance called ‘Nice Screams‘ as part of EVA International Biennale of Contemporary Art in Limerick in Ireland. They are called ‘Softday‘ and they are mega, be sure to check them out.

But yeah, had to let them down the last minute also because I was so ill that every time I attempted to move in the bed I vomited and this with the savage nausea ended up making me very tachycardic. The 2 days before this I had been ok, sick but manageable, had even been speaking to one of my friends in the wee hours of the morning saying that I had been good and was looking forward to going to see their piece. A few hours after going to bed though, that all changed. I held on hoping something would change but I couldn’t realistically go anywhere the state I was in, then Keith couldn’t go either because he can’t leave me alone incase I syncope or seize without breathing.

It’s a shyte state of affairs to be honest, but I also know I am not the worst case either. There are far worse than me out there. At the same time though, it’s still not easy having to be constantly supervised and those doing the supervising cant move an inch either. I think that is very unfair especially on my Husband as it is fulltime for him.

Tuesday the 26th I had an important consultation with Dr. Akbar in Cork University Hospital. He is a Gastroenterologist and from what I hear, he is very good and very well up on EDS. He is also well acquainted with Prof. Aziz in London.

When I was over in London meeting Prof. Grahame who diagnosed my EDS Hypermobility type, with possible overlaps of other EDS types, he heard about my stomach and gut issues and strongly urged I go and see their Neurogastroenterologist called, Prof Aziz. I haven’t been able to get over since (Tried a number of times to get over and had to cancel because of mostly hospital admissions and their recovery) and now, I currently have been told not to travel for health reasons and as such until I can go see Prof. Aziz in London, for now at least, Cork is closer to get to. Except on Tuesday, we again were in the territory of calling an ambulance. I had to reschedule and thankfully I got another appointment for the 17th of May. Hopefully I can make that one. I am so pissed I had to miss it, especially when it would have been good for him to see me in that state, but I couldn’t even get to the car without passing out.

Wednesday: nothing on but my neck and base of my skull started giving major trouble. Thursday: again nothing on but the pain was significantly worse, this time with serious inter-cranial pressure bringing me close to syncope every time I sat or tried to stand up.

Friday: Woke to moaning, my own moaning! I couldn’t move my neck at all. The migraine and pain was so bad I was not able to so much as open my eyes without wanting to scream. Every breath in, swallow, slight movement made my neck, base of my skull and what felt like my entire brain from searing! Extreme dizziness, fatigue, nausea and mostly pain. The thing was, If I could stay upright, I probably would have lived through the pain to go anywhere but if I tried to go more than a 45º angle off the bed I was starting to black out.

I had a pain specialist appointment that day in The University Hospital Limerick and I was in too much pain to go!

How does that even make sense? 😦

It was an important appointment too in that I would have been getting some neck X-ray results back from a couple of weeks ago to see if it needs to be escalated to an MRI, if not an upright MRI, and booked in for more steroid injections into my SI joint and the Occipital nerves of the base of the skull. Also, just like Tuesdays appointment with Dr. Akbar in CUH, it would have been great for him to see me in that state to understand the extent of what happens.

It’s not the pain, or nausea or anything, I can live with all of those,  (well sometimes I can’t but there is a constant baseline of sick that I live with daily that is manageable) but it’s the constant NCS/Vasovagal Syncope (They are the same thing) especially when it happens and my breathing stops, that’s what stops me in my tracks.

Then here we are today, Sat the 30th and I had to cancel that thing I was meant to be doing starting Monday (What I spoke about at the start of this rant!)

*Sigh…

I’ll just have to continue rescheduling life until I am physically able for these things. I feel guilty about this, feeling like I have let people down yet I know I can’t help it either! :/

Do you folks (Mainly with chronic illness’ but I would love for anyone to reply!) have to constantly reschedule? Do you feel bad for doing so while also knowing that IT IS IN NO WAY YOUR FAULT! or… am I just a strange thing?!

Share your thoughts and thank you so much for reading. 🙂

I had a HIDA Scan a couple of weeks ago too, I will do a blog post for that alone, it was an interesting if not somewhat boring test, but ill fill you in on that next time 😉