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!

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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.
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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 🙂

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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!)

Latest Fund Update – Jan 2016

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Please click on this image to be taken to the fund page – Thank You

GoFundMe Update
Posted: 19th Jan 

Happy New Year everyone! I am sorry that I haven’t updated in a while but I was pretty unwell over the holidays then life, the universe and everything got in the way since!

I have updated the blog with the most up to date hospital admissions, appointments and NEW NEWS about finally getting an appointment for the Harold’s Cross inpatient rehabilitative treatment, That had been recommended as part of one of my next medical treatment steps, by Prof. Grahame while I was over in London!

Read the blog update on: www.irishdysautonomia.wordpress.com

Harold’s cross starts on the 8th Feb. I will initially be admitted for a week where I will undergo an intensive daily schedule of Physio, Hydro and occupational Therapies along with pain and medication management to help me live and cope easier at home with these medical conditions that I have as well as making me more mobile and hopefully gets me out of the wheelchair for good!
I can go home Sat. And Sun. for a rest before being brought back up for another week if it is deemed necessary to continue. This treatment may continue for a number of weeks or months.

Once Harold’s cross is done for a few weeks, I hope to be well and strong enough to travel back to The Hypermobility Unit in London again for further diagnostic tests and to meet with specialist consultants who specialise in EDS, of which, there are none, in Ireland.

This time it has been recommended to me by my doctors here that I go meet with a Nurogasteroenterologist named Prof. Aziz who will be able to treat me in relation to my Gastroparises , Gallbladder and Slow Gut Motility problems, as the surgeon here has tried everything he knows but is lacking knowledge in relation to EDS in order to help me further.

My Pain Specialist Here has suggested I may need an ‘Upright MRI’ also to confirm or deny possible neck and head instability problems , as well as, possible Chiari Malformation.

It is more than likely a long shot but with the severe pain, migraines, Seizures, pins and needles , weakness and many other symptoms I present with, it is considered possible enough for me to get it checked as soon as I am able.

Again I would like to stress that, without this fund and all your help, my medical treatment and diagnostic tests would never happen as there is no specialist consultant or medical centre available anywhere in Ireland for EDS. People like myself, our only option is to travel. And the cost of everything medical abroad is impossibly and prohibitively expensive.

I want to take this opportunity once again to thank everyone who has helped out in this fund so far by Donating money or Donating your time in organising Fundraising events. I can’t thank you enough from the bottom of my heart.

Let’s hope 2016 brings good health to all of us 🙂

THANK YOU!
Lette xxx

*Please click on the image at the top of this post to go to the fund page
**Alternatively, you may click HERE 🙂

ERCP In The Morning!

It is happening!

I got the appointment for the ERCP on my ‘Sphincter of Oddi Dysfunction’ (SOD) a few weeks ago and confirmed the date for tomorrow, the 21st July in UHL.

I rang this morning to confirm everything was going ahead and I was told that because of a few emergencies that have to happen first, I may not be called at all so I was left waiting until after 4pm today to see if I would in fact be called for the procedure!

I was irked to say the least as I have been admitted to hospital twice since December for the pain and have been in constant pain since last being left home in April. The pain has also increased in the last couple of weeks and has gotten pretty bad the closer I got to this appointment. I think the pain meds I am on are losing their strength and the pain in the last few days especially has been bad enough for us to consider going to A&E, but I held off from going in knowing this appointment was coming.

It turned out that at about 3:30pm, I got a call back from the hospital and was told I was on the list for the afternoon and I have been called in so… yeah! It’s happening!

Until I speak with the surgical team tomorrow I am unsure if I will be staying in or not, but apparently this is only the first of a few ERCP’s on the SOD I need to have done. I was told that to weaken the muscle they would need to repeat the procedure a few times, but I know nothing else about what may happen or how often they need to do it, dates, recovery time, illness in between, anything! Which is currently preventing me from making plans to get back to London for further treatment. Until the pain is eased enough for me to travel (and I have been too unwell to travel since last December) and the procedures need to be out of the way but as soon as I see a clear path I will be making plans once again.

So in I go at midday, will hang around for a couple of hours I am sure, then will have the op, I will be knocked out for the procedure and it should be straight forward enough… have I ever been straight forward though?! They should monitor me for about an hour after to make sure all is OK and will then either admit me or send me home, no idea!

Either way, I will fill you in after the event!! 😉

Heading back to London

Or at least that’s the plan!

I have my email sent for a new appointment to see Professor Qasim Aziz over in the Hypermobility Unit at the Hospital of St. Johns and St. Elizabeth. He is a Neuro Gastroenterologist who works alongside Prof Grahame, whom I have already seen. I’v been told by both Gastros I have seen on the 23rd of this month that going back to London is recommended as the best next course of action, to see specialists knowledgeable in conditions related to EDS.

So I have opened the fund again as this is the only way it is possible for me to get treatment abroad at the moment.

Even if you could share this link ( gofund.me/LetteEDS ), I would greatly appreciate any help and support, thank you and as always I will keep you updated with posts on how everything is going.

Thank you all once again.

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I Was In Hospital yet again!

…but this time it wasn’t directly because of Dysautonomia, but kindof because of the EDS!

I ended up back in hospital 4 weeks ago because of serious pain in the area of my Gallbladder. I had been nursing a nagging in my gallbladder area for a few days prior then out of the blue, a faint and I woke to excruciating pain in my right hand side, up near my ribs. Ambulance called and I was carted to Hospital once again with suspected Gallbladder trouble.

It wasn’t long before I was admitted to the surgical ward under a new surgical doctor and his team who were excellent, their enthusiasm was like nothing I had been used to with my usual team of doctors.  The doctors suspected Gall stones or something to indicate the gallbladder was in trouble. A lot of tests later and it turned out luckily for me that there were no Gallstones but one test did show I had Gallbladder and gut Dysmotility meaning it was not emptying or behaving as it should and this was causing the pain, discomfort and other problems in my gut too.

I was very sick, uncomfortable and in a lot of pain, even though they treated me with strong pain killers and continued some tests. I was then free to go home the Friday of that week.

While at home I was still very unwell and everything I ate hurt me and made me feel worse until that Sunday night, I became very unwell after dinner, vomited and the pain in my side erupted, ten fold! I cant even begin to describe the pain I thought I had been skewered! This continued long enough for Keith to ring an ambulance again.

When the Ambulance crew came they transferred me into the back and called the hospital to fill them in of my condition saying my pain was 10 out of 10, that was no lie, I never felt anything like that before!

One of the guys started to worry about my Blood pressure as it was reading only 80/40 (Normal reading is 120/80) and he was concerned encase I may faint and go into respiratory arrest as I usually do when I pass out. The pain was terrible but they called an advanced paramedic to meet us half way to the hospital and he could administer Morphine until I got to Resus in the Hospital.

I arrived in Resus, blood pressure very low, pain and heart rate very high, they started attaching wires and sensors while I groaned on the bed. This ended up being a very long night, my body started giving out and acting up to the point where a catheter needed to be attached as certain systems in my body had decided not to cooperate because of the strength of the pain meds I was on.

More tests, A very long waiting time in an extremely busy A&E and I was finally admitted to a bed on a ward upstairs.

Long story even longer, I ended up staying in the hospital another 2 weeks, making my overall stay with this thing just over 3 weeks. I had some xrays, other tests and Gut Transit studies done during my stay, these showed that my gut was in worse shape than they originally thought. It has severe dysmotility, most likely all caused by the EDS and Collagen problems in the gut. It is treatable but there is no guarantee it wont continue to get worse on its own.

Going forward my Doctor mentioned I would have to use certain medications to help with the gut transit issues and I have the be extremely careful with what and how I eat as my gut is in danger of dying altogether now that it has gotten to this stage, so I have to treat it like a baby! He mentioned following the Low Fodmap Diet as a matter of necessity not of choice. He also supported me going to the UK for treatment, he agreed that there are no specialists here that are knowledgeable in EDS and its related complications and he was kind enough to ask the ward nurse to look into any financial options that would be covered by the HSE. Unfortunately I heard nothing back on this but it was the first time a doctor acknowledged the need for treatment abroad. I will be making an appointment to see Prof Aziz in London in the new year.

So after getting this info along with a long list of prescriptions, he said I was free to go and he would refer me to his outpatients clinic for the new year to follow up on how I am doing. He also said he wanted me to see a specialist Gastroenterologist and I got an appointment just today, to meet him tomorrow morning, so I will be interested to hear what he has to say. The same doctor has a personal interest in EDS.

I will update tomorrow on how the appointment with the GI specialist goes, hopefully it is all good and helpful news going forward. I hope 2015 is less on the hospital visits than this year has been!!

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UPDATE: 23/12/14

I went and had the appointment with the new Gastro  Doctor in Nenagh General Hospital and he has put me on a new drug to stimulate my gut function, other than that there is no new news 🙂

Got To London & Met Prof. Rodney Grahame

We were off to see the wizard, the wonderful wizard of… The Hospital of St. Johns and St. Elizabeth, in St. Johns Wood in London, Professor Rodney Grahame. Specialist Rheumatologist.

On a rainy Monday morning, August 25th, we rose early to catch our flight into Heathrow from Shannon, leaving Ireland at roughly 08:45am and Landing in England at about 10am.

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I had never been to England before so I was looking forward to the trip. After Landing, we caught the express train into the city where we could drop our things into the hotel, grab some food and gently meander around the locality. Though that didn’t last long, I was wrecked!

Considering I got no sleep the night before and had to be up at 5am to check into the airport I had to come back to the hotel for a while and take a nap before we were to meet with some friends for dinner that evening, the day had already caught up with me but the nap did me well and I went out and about where our friends showed us around some of the city (In the milling rain!) and took us out to dinner.

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It was the following day we were to meet the wizard and after a long and busy first day, we slept hard that night!

So, Up on the Tuesday, we strolled down to St. Pancras and Kings Cross Station where we grabbed a bite to eat and went for a walk afterwards to kill some time before the appointment. The time came and we took a Taxi to the hospital.

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Accessibility in London sucks… like really badly sucks, the Taxis and most busses are equipped to take individuals in wheelchairs but the city itself, the pavements are damaged and rough, few ramps, dangerous roads, unreliable traffic lights and most shops, cafes and places in general were stepped without lifts or alternatives for wheelies. The majority of the underground Tube stations were not accessible and Also, I hate to say it, but most people on the streets don’t care if you are in a chair or not, they will walk straight through you, in most cases. For such a big city it (Accessibility wise) was a bit of a disappointment.

IMG_1756I wasn’t sure of what to expect when I got to the hospital, but I wasn’t expecting what greeted us. A modern, beautiful building, all level access for chairs, open and bright and it even had a concierge beside reception, A CONCIERGE!! Seriously, inside the door ready to help! 😀 I was highly amused by that!!

ANYWAY!! Up to the 2nd floor we went where I checked in and was told wait in the waiting room. Before ten minutes passed, a door opened at the far end of the waiting room, and there stood a tiny, slightly frail looking man wearing a classy suit and a smile, It was the wizard, He called me in!

Prof. Rodney Graham welcomed Keith and I into his office where he did everything to make sure we were comfortable, even asking if the air conditioning was ok!!

I have to say he made an immediate impact as being a gentleman. I was only supposed to be booked in with him for an hour, he saw me for at least 1 hour 45 minutes.

He started by listening to my full medical, family and symptom history, taking notes as I spoke, stopping me briefly as I went to ask questions and clarify some things. He then went on to ask me a list of questions relating to family, symptoms, hospital visits, all my broken bones and injuries, asked about my pots and Gastro intestinal issues, everything! Then a physical exam where he measured my arm length, measured the curvature of my spine, did the Beighton Scale on me (The Beighton score is a simple system to quantify joint laxity and hypermobility) Checked each of my joints separately for hypermobility. Checked the elasticity of my skin, the blue in the whites of my eyes, checked my flat feet, the inside of my mouth for a high pallet and overcrowding, asking about anesthetic resistance which I have had at the dentist many times before. He asked me about cuts, bruises, bleeding, checked my blood pressure, height…

He went out of his way for a full hour and a half to rule out EDS of any type, then sat me down in front of him again, looked at me and said:
“You came here knowing what you had, you do know what you have, don’t you?”

I replied:
“I think so, but I need to hear it from you, Professor!”

He fully confirmed a diagnosis of EDS type 3 Hypermobility type, with gastro issues. Explaining to me in full how this is not a benign condition and that it needs treatment. He said he would write to each of my doctors and to me with a confirmed diagnosis, a full treatment plan and a recommendation for me to be referred to both a gastroenterologist and to  Harolds Cross in Dublin for intensive physiotherapy and rehabilitation to get me back on my feet.

He said we would wait and see how the Irish doctors and the HSE reacts to his letters and if nothing happens fast enough in the next few months he will recommend for me to come back over to his team for me to see Prof. Aziz (Neuro Gastroenterologist) and Prof. Mathias (Autonomic and Neurovascular specialist) for faster, although private treatment.

I also asked about the seizures and if Dysautonomia could cause them. He said he was not a neurologist but that people with EDS and Pots have had Non Epileptic seizures before, but he did not know if the seizures were caused by dysautonomia or something else, but that it has happened. He also agreed that it was most likely the medication that they were giving me to ‘treat’ the seizures, in fact, made it worse, giving that now I have stopped being prescribed these meds, I have had no more seizures.

I was delighted, It was so worth the money to fly over and meet him, even for the confirmed diagnosis itself. I haven’t received the letters as of yet but as soon as I do, I can presume my doctors will have gotten them too… I am very curious as to how they will react to what he has to say. Prof. Grahame is considered one of the worlds best Autonomic specialists, I would hope they listen to what he has to recommend for me and that treatment can finally get a proper run for its money! I would really love a chance at Harolds Cross for Rehabilitation. Anything to help me back on my feet again 🙂

IMG_1758We had one more day in London before flying home, we booked an extra day not knowing if Prof. Grahame would send me for some diagnostic tests or not but we had the day to ourselves.

A dear Irish friend of ours, now living in Stoke On Trent came down to London to meet up, it was the first time seeing her since Christmas and it was brilliant to catch up. We decided to go to the Natural History Museum to see the Dinosaurs and because it is free in! It was amazing! After a short wait in the queue to get in, the museum itself was fantastic. Not entirely accessible though, just be aware if you go there, not all areas can be accessed by wheelchairs but overall it is still definitely worth going to see and ended up being one of the highlights of the trip overall 🙂 Unfortunately we arrived on one of the last days that kids were off school, so the place was packed and the queue for the dinosaur area stretched the entire way across the museum, it would have taken well over an hour to get in and we decided not to wait, either way there was plenty for us to see, check out the photos I snapped on the phone! 🙂

IMG_1804After being about three hours at the National History Museum, we decided to head to Covent Garden where I picked up some pressies for the family and we caught a bite to eat, walked around for a bit and took in the sights and sounds before getting our friend back to Euston Station for her train back to Stoke on Trent, we said our goodbyes and Keith and I headed back to the hotel room, started to pack and prepare for the flight home the next day, then fell into bed.

The following morning we grabbed some breakfast and headed out to Heathrow, before long we were back on the plane home and it was all over. If I am to head back over which may very well be a possibility very soon, I will only stay for 1 or 2 nights as opposed to 3. London is expensive and you easily notice the extra day on your pocket just with eating and getting taxis alone But we didn’t know what to expect from our first trip and it was well worth going over to meet the man. I couldn’t have done it without the Medical Fund, and hopefully now treatment will get underway properly without any more doubts from the HSE.

My next appointment is on the 15th so I am interested to see how that goes and of course ill fill you in, so that is all for now, will leave you with some other shots from walking around London! Toodle pips! 🙂 🙂 🙂

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