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!

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.

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 🙂

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!

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!)

The Blog Awards Ireland 2016 – Nominations Now Open

Hi all,

I am delighted to say that Irish Dysautonomia Awareness has been entered into this years “Health & Well Being” – Personal Blog – Category in the blog awards nominations and hopefully will make the long list at least, that’s where it got last year so to make that again would be really nice! 🙂

If YOU would (Please) like to Nominate this blog Please click HERE (Give it a minute to load, it can be slow!) or click the image below and follow the instructions. I would greatly appreciate your input, THANK YOU! You need to register with the site but you can do so quickly and easily  by signing in with your Facebook and you can control what information you give them.

Please enter The Title of the blog: Irish Dysautonomia Awareness,
Also pop in the URL of this Blog which is: https://irishdysautonomia.wordpress.com
also please be sure to enter it into the ‘Health & Well Being’ – Personal Blog – Category.
Thank you ever so much!

Please click here and enter the info to Nominate this blog! – THANK YOU!

This year there is also an entry to nominate your favorite Blog Post from the blog here. In the last number of months the post that has raised most interest seems to be this one:
‘The Good, The Bad & The Emergency – Part 1’

I would also greatly appreciate if you have the time, to maybe nominate that blog post Please and thank you most kindly! as far as I can figure, there’s no harm in trying! 🙂

It is the same process as the first, please click Here:
Hit ‘Nominate a Blog’ – Enter the ‘Blog Post’ Title as: The Good, The Bad & The Emergency – Part 1

The Blog Post link is : https://irishdysautonomia.wordpress.com/2016/04/05/the-good-the-bad-and-the-emergency-part-1/

The Category is ‘Best Blog Post’ – Personal Blog

Please Click Here and Enter ‘Blog Post’ Details (As I have laid out above) for Nomination – Thank You

Thank you so very much for you time in doing this each and every year, I may be back to you for more support if we make it to the ‘public vote’ part but even if it doesn’t get anywhere, a few more people will view the blog as a result of just entering and further our much needed awareness, even just a teeny bit.

Thank you once again,

Lette – Fainting Goat!

Funny things you notice in a chair…

I am a complete beginner at this whole wheelchair thing, and its been grand really, but I have noticed a few funny things, like the way people treat you and how easily you can hurt yourself in one of these things!!

Recently I went for a walk with my better half and the pup, I call it a roll up the road! So, there we were at the shop and this old guy pulls in with his car on the forecourt, gets out of the car, is hardly able to walk himself and I swear he was doddery as they get, but I had to laugh at what happened next.

I had Boo’s lead and keith was pushing me in the chair, this guy falls out of his car and just about managed to balance on his walking stick. He spots us coming and lamps me in the chair and automatically proceeds to treat me like I am mentally retarded!

“Oh! is that your cat!?” (pointing at boo with that look you give 2 year olds when you tell them you just stole their nose!)

“Thats a lovely little cat, oh, OH?” *big stupid smile at me!

I look back, somewhat sympathetically I might add, but just say,

“yeah… she’s my cat” and I smile

“AH! you’re too clever for me, HAH? HA? OH!” he turns and wobbles into the shop.

I look up at Keith and we just giggle.

Thing is, he did it AGAIN when he came back out! FFS!

Anyhow, that was the first funny thing, then yesterday something else happened. I dunno if I should call her a busy body or if she genuinely wanted to help, but considering she was saying it while she was in the process of storming towards her car, makes me think she is just a busybody!

Keith had brought the wheelchair around to the passenger side of the car so I could skooch over onto it, this ‘ould wan’ comes from the direction of across the road, she was heading to her car which was parked behind us. Lamps the chair, Lamps me and the looks at Keith and said,

“Is she alright, ja want help?”

Keith just said we were good and she continuously walks towards her car and eyes me suspiciously as she goes… it was a little uncomfortable!

While in doing shopping a few times I have noticed people insisting that I go ahead of them in the queue, or getting sideways glances, especially from kids. It’s like they cant help but stare, its funny though, they are just innocent, but you would imagine some adults would know better, but not really.

Thankfully it has been ultimately a positive experience in the chair. It has allowed me to get out more and has helped me get around home easier and even with people, they are mostly positive, inclusive and understanding. It is only a tiny few that stand out and there is a minority in every society! 🙂

On a light note, I am finding out new things about using the chair… and what not to do! :p

Wheelchair lesson No.1 = Get gloves and keep your fingers out of the way of wheel spokes, OUCH!!! Fair few bruises and cuts to the fingers at this stage!

Wheelchair lesson No. 2 (Learned all of about 5 mins ago – heart still racing!) = DO NOT lean forward to reach something on the floor… I may be very flexible but the chair isnt and will tip over… Jeebus me heart!!!!!

Wheelchair lesson No. 3 = Remember your toes will be the first thing to hit the on coming wall/door/kerb/car/everything!!! Mind the tootsies!

Wheelchair lesson No. 4 which was given by my friend Michelle Roger from “Living With Bob” Blog = watch that scarf. Just thought I’d give you a little heads up from my own painful experience!! thanks, Michelle! Hope your neck is ok! 😮

Wheelchair lesson No. 5 = remove the seatbelt as it gets caught in the spokes … I do have a feeling this will come back to haunt me sometime in the future where I see myself somehow launched from the chair and thinking mid flight, “Well that was a crap idea, Lette!”

Wheelchair lesson No 6 = testing to see how fast you can turn the chair in tight circles, will make you nauseous. Yes you will want to vomit

And finally, For F*ck sake, Use the brakes!!!

Things I find help with POTS Symptoms

I have discovered a few things that really help the symptoms of POTS and thought it would be good to share for others who may not know about them, they are simple but seem to help me a great deal and anything that helps has to be good!!

#1: Firstly and its my savior, I have to say ginger really is a lifesaver!! I get really bad nausea most days, so bad im rendered sobbing into a bucket off the edge of the bed and it really is a pitiful sight! However, the hubby did his research while I was having a bad episode and he really wanted to help. We found that ginger tea works almost instantly in settling nausea and upset stomach. Tastes a bit yuck but I wouldn’t care if it helped and boy does it!

If you have real ginger it works best, Ginger and Lemon tea bags are good too but dont work as fast or as strong. What I normally do is get a Ginger and Lemon teabag, brew it and also add a tea spoon of real finely chopped or ground ginger so that its not just the flavour your ingesting but the actual ginger itself and it works almost instantly!! Its a must!!

I am blessed that the better half has packed out the home cooking with ginger too and I have found I am now waking with little or no nausea in the mornings, its great and leads me to the next tip!

 #2: Home Cooking and changing eating habits really help to alleviate the symptoms of POTS. People with POTS have a strange diet change and usually it goes against what every Dr. and Health pro would tell you to do! At the start when I was first diagnosed, I hadnt cut out certain things like: Starchy Carbs, Dairy, Sweets and take away or processed foods or increasing things like Salt (20 grams a day for me but ask your Dr. for individual cases) to increase blood pressure and pulse, black coffee for heart and energy stimulation, All these things have a huge impact on symptoms. As soon as I started to follow this advice I felt great the very next day with only tiredness to battle which is easy without pain and sickness!!

#3: Keep Hydrated, it is soooo important for everyone to keep hydrated but especially people with POTS because of the fluids lost during certain symptoms (I don’t need to gross you out!). I find electrolyte drinks like Powerade excellent but others likeLucozade isotonic drinks give me headaches so you have to find the one that works for you. Electrolyte drinks hydrate faster than water but you should try to get at least 2L of fluids into you a day in the form of water mainly and then these drinks 2nd.

#4: Know how to rest during important times like showering where your body is under stress, Get a shower chair and limit the amount of overhead arm movements as this can trigger syncope/fainting episodes very easily because of the heat of the water and blood pooling in the legs. Reduce the heat of the water to what you can tolerate and before you leave the shower, rinse your legs in cold water to cause your blood vessels to constrict and pump blood back up to the heart and brain.

#4.1: If going from a lying position to standing, sit with your legs down for a few minutes before attempting to stand up, this will allow your body to acclimatise to the change of position and will reduce the risk of fast blood pooling and syncope episodes.

#4.2: If you find you slump or hit a wall in the middle of the day while up and about, take a bed break! I find even as little as an hour snoozing can give me a tiny boost of energy for the rest of the evening, its minimal mind you but you would risk further symptoms triggering if you don’t listen to your own body and take a rest when you need to!

#5: Take Vitamin D, Ask you Dr. first to be sure but its known as the sunshine supplement, this is brilliant as people with POTS may not be very mobile and cant get outside as often as they should. As well as taking all the meds we need to take, Vitamin D is known to help nearly all organ tissues in the body and it has psychological benefits,  as does real sunshine, ever heard of the winter blues? A lot of people get affected by the lack of sunshine in winter and it can actually trigger depression, its all down to the lack of vitamin D. Sometimes its hard not to feel down with an illness so increase this and you will increase happiness as well as organ tissue health! 

 #6: Avoid Stairs on bad days, goes without saying really but putting that pressure on your heart rate when you are already feeling low is a very bad idea and you do not want to faint at the top of a stairs!

#7: This is going to sound cheesy but THINK POSITIVE!!! I have been doing heavy research on POTS and Dysautonomia in general and the amount of what I call ‘Doom & Gloom’ videos online is frightening! Those videos or write up’s of how bad and terrible people have been feeling, Avoid this crap! Really, the power of positive thinking can really float you a long way and I’m no hippy but it works! So concentrate on the things you CAN do and not the things you cant, be happy for what it is you have and not what you haven’t got, thinking like this really does make a difference. Use your time wisely and creatively and share your experience so that others can share alike, you never know, ya might learn something along the way! 

#8: After being advised by my Dr’s in the hospital before leaving, they gave me and told me to get some Compression or Embolism Stockings to help stop the level of blood pooling that happens in my legs. They have proven very helpful and on the days I don’t wear them I usually faint, when I do I can stand for longer and usually get more hours awake during my day so I highly recommend these for other Pots or Dysautonomia sufferers. They can be gotten from any pharmacy or from your local health nurse, also this brand: ‘Jobst‘ are excellent for support stockings of all different colours, shapes and sizes which is great to colour code with clothing and are far prettier than the usual plain white ones you get at the pharmacy! You can get half leg, up to the thigh and tights style stockings so which ever works for you, personally I find the higher the stocking the more support and benefit they are but each to their own and find what works best for you. Not only that but they suck everything in!! Thats gotta be good right?!! :p

 #9: Sunglasses are now a lifesaver! I don’t know which of the tablets are doing it to me (and it is the meds as the Dr. told me it would happen I just cant remember which one does it!) but I have become highly light sensitive and my prescription sunglasses from long before getting diagnosed with Pots are getting more use than ever. If you dont have sunglasses and are finding this with Pots/Dysautonomia meds I recommend a high UV filter in whatever shades you decide to get, dont skimp and get cheapy ones because they will ruin your eyes and have zero UV protection which will damage your eyes in the long run. Pay well once and mind them, it will be well worth it!

 #10: A blood pressure monitor and a heart rate watch are 2 things I have picked up and have started tracking my daily stats. Not only for myself but for my Dr’s as I will be seeing them so infrequently I would rather keep a full history on the days they haven’t seen me. I find them excellent for allowing me to slow down when I need to and for when I know I can push myself that little bit harder too.

 The heart rate watch is pretty cool as it doesnt need a chest strap and I got it on sale at Amazon. Its a Womens Sportline 710 analogue heart rate monitor watch and is very accurate and not as bulky as other heart rate watches. Click on the link there if you want more details but its currently on sale on Amazon for half the price you would buy in stores.

The Blood Pressure monitor is a Sanitas SMB 30 Upper Arm monitor and I picked this little beauty up in Lidl for €17.99!! It works perfect and I didn’t break the bank! Upper arm is considered the most accurate, try and avoid the wrist monitors, they cant give as accurate a reading (apparently, im no expert, just going by reading lots of stuff and what my Dr. said!)

#11: Also for keeping track of my stats, I use my Android phone and have an app called ‘BP Log‘ which has a lovely clean, no nonsense interface and is very simple to use.

Anyhow, that’s all for now until I think of more, if you have any questions or want to take part in the blog or new youtube channel (Where there will only be positive videos, none of the ‘Doom & Gloom’ kind!) please let me know. Thank you for your interest.

Lette (The Fainting Goat!)