Holy Nerve Blocks Batman!!

Hi everyone, (all maybe 2 of you who read this humble bloggie! ;) )  I hope you are ‘both’ keeping very well? :p

Thursday, this week, was the day to get my Sacroiliac (lower back/top of pelvis near the hips) and Occipital (Back of the skull near the very top of your neck) Nerve Blocks in Croom Orthopedic Hospital with the Good and Great Prof. Pain Specialist (as I shall refer to him!)

I really like this guy, he is friendly, thorough, very helpful and LOVES History! :D When he speaks with you, if he gets a thread of a piece of history he may know about in the conversation, he will pull that thread and see where it goes! He likes to talk and looks like the epitome of a Pain Specialist, Tall, Slim, White Lab Coat over a nice suit and tie or sometimes he may be in blue scrubs, and there he stands with an ultrasound probe in one hand and an intimidating looking injection in the other and usually a large grin on his face! :p

Anyway! I had found the last 3 weeks or so very bad with pain, especially at the base of my skull and the top of my neck and shoulders and as I have been given admission in Harolds Cross from the 8th of February for at least one week and perhaps more, so I needed these before going, gladly, I had the appointment already given to me since my last admission in October where I had gotten my first Occipital Nerve Blocks.

It was a really long wait, my appointment was at 12 and I didn’t get in for the injections until after 2pm! He asked me how I was doing, reviewed my pain and pain meds and went in for the kill!! These injections are sore but not impossibly so. They have anesthetic in them so there is a numbing effect which kicks in after a couple of minutes, but the injection itself will make you squirm, just a little.

I got the injections under ultrasound and while looking at my neck he said he wanted to send me for an xray and following that an MRI. I will be called for those soon but he said he wanted to check for possible instability or anything that might give away what might be going on in my neck. He said it sounds like instability of the neck to him but it cant be seen or confirmed without proper scans and tests.

He explained that the clarity and contrast between a regular xray and an MRI wouldn’t have much in the difference but that it would be a proper start to the investigation of what is going on in my neck. Depending on what shows up or what doesn’t show up on these xrays, my next trip to London may involve an upright MRI to investigate deeper for instability or other complications.

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This is the pain progression from when I woke Thursday morning (First Line) during the hospital wait and injections (Second Line) to when I finally got home after the injections!

While behind me giving the injections in my sacroiliac joints he grabbed my ponytail and said,

“Perhaps getting this hair cut may help ease your discomfort? especially before starting in Harolds Cross”

When I asked if he really thought it would help he said he didn’t see why it wouldn’t at least help ease the pain, anything to cut any bit of weight off the neck is a good thing and that having to deal with hydrotherapy, pools and showers on a daily basis while in Harolds cross, would probably add more stress and strain to the neck so he thought it would be best to get it cut sooner rather than later! …so, I will! :o

I had been planning for near months to get the mop cut anyway, its been over a year and its in dire need of a nice new doo!

My plan then for this week is to get ‘mah hurr dunn’, Relax and recover from the nerve blocks before starting in Harolds Cross. They take anywhere from a few days to a few weeks to kick in properly to kill the pain, so there is a small improvement at the moment, nothing spectacular just yet but I am hoping as the next couple of weeks go on, the pain will ease even more (I hope!) I have had them done many times before and sometimes they have worked great for a few weeks and then sometimes, I felt they didn’t do much at all. I will just wait and see how these go! :) I have a Pots outpatients Clinic Monday Morning at 10am and have to meet my GP during the week to sort out my scripts to have ready for going up next week.

I have nothing major planned until I head to Dublin on the 8th of Feb, when I start in Harolds Cross, but I do want to update you while I am there also. I need to sort my WordPress app out on my phone, if not I will have to just take notes and do a full fill in when I am home!

Either way, I hope to find out if it is worth it for people like us.
I reaaaaaally hope it is! It would be lovely to have a place that provides safe respite for people with rare musculoskeletal conditions. I will keep you posted!

Until then, please keep up to date over on the Facebook Page, Twitter and of course The Private Support Group if you would like to share your stories, experiences or questions with like minded and like bodied people like ourselves in a private and safe environment, please feel free to join us, just send a request and ill be sure to let you in :)

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 :)

Jan 2016 Updates and Harolds Cross Rehab News!

The last time we spoke, I had said I would write back to update you on the last couple of hospital stays, latest medical related news and now I have heard back from Harold’s Cross RMDU and they want to book me in on the 8th of February so now that is also something to prepare for!

When admitted last in October, I was in for severe pain in the base of my skull and neck. With this pain I was having severe headaches that seem to come on worse just before a seizure kicked in, of which I was having many episodes prior to being admitted to hospital.

An ambulance was called because I had a strong seizure that lasted more than 10mins and over 30mins by the time the ambulance crew arrived. Though Keith told them I was allergic to Benzos, they said: “its the only way to stop her seizure now so we will give her some and watch her closely until the hospital anyway”

In the A&E I was immediately taken into Resus where they got me under control, monitored me for a while then placed me in a corridor again in the main A&E area. I wasn’t there for long as I very briefly remember Keith arriving to talk to me then apparently I went into another big seizure where I was rushed back into Resus again but this time I was kept in there for longer.

They put me on a phenytoin infusion to stop the Status Epilepticus  (a seizure that lasts too long) but of course I am allergic to these medicines so I had a bad reaction to the infusion at the IV site and my arm swelled up a huge amount, my BP dropped dramatically and I started presenting with Cardiac arrhythmia’s and it had to be stopped!

Once things settled I was admitted to a ward and eventually seen by a new doctor, A Cardiologist who said he would take over my care once I explained in detail that too many consultants are part of my medical set up that there is no communication between any of them. He was completely unaware of my situation himself at that time but once he realised I had in fact 3 very large old medical files (He was working off a new one that was put together only in the last 6 months and has none of my long history in it)  he ordered the old files to his office so he would read over them in detail and he said he wanted to be my head consultant, if I would have him, so that he could be the ‘go between’ amongst all the consultants! I said that would be great, but I have yet to meet him outside of this admission, I have an outpatients appointment with him on the 22nd of Feb so I will be eager to see how he wants to handle my care from then on. When inside I was seen by my usual Prof. Pain Specialist and he gave me Occipital Nerve blocks to help with the pain in the base of my skull and the severe headaches that go with it. These nerve blocks were a huge help numbing the pain and as a result there are less seizures with the less pain too.

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Then over the first week of December I was admitted to hospital again. This time for something completely different… I couldn’t pee, I know, I know, not pleasant to talk about but look, this is the sexy life I lead!!

So once I explained to my doctor what was happening over the phone, Low body temperature and feeling very unwell the week prior, then all of a sudden, total urine retention,  he said get straight into A&E, apparently not being able to pee is serious, I hadn’t even realised so in I went and actually got seen straight away! A catheter went in, lots of questions asked to see if we could get an answer for it and all that could be found initially was it could possibly be the combination of medication I am on or the Gallbladder related severe pain and slow gut motility may have something all to do with this, we wouldn’t know until I was admitted and lots of tests had been done.

After a week of many scans, tests and some invasive procedures, I was put on what is known as Intermittent self catheterisation  for Urine retention because of Bladder and Kidney dysfunction. I was given a lil goody bag full of things to use for it (See below, I’m all girly about the bag, innit pretty?!!)  and I have to do this daily at home until I get called back by Urology to do more bladder and kidney function tests to see if I will continue this method or possibly be given a procedure to place a permanent catheter (I would really rather not have that, I don’t mind this method at all now that I am used to it!)

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My pain specialist prof. came to see me because of the Gallbladder pain I was in too and though I had been given ‘anti spasmodic’ pain killers as is recommended to help treat the Gallbladder pain, they also put me on Morphine to take very regularly at home on top of the anti spasmodic pain meds, daily, to cover all the different pain I am under on a very regular basis. I don’t like being on Morphine at all, it completely messes with you sometimes but it no doubt helps the pain, it doesn’t even take it away but helps more than anything else I have been given.

Im currently still waiting on that Urology outpatients appointment.

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While admitted in December, the Urology doctors also wanted my Gallbladder to be looked at again while I was in but my G.I. surgeon was on annual leave and I couldn’t meet him until the 5th of Jan. When I did, he was great as always, very thorough and not wanting to jump the gun with my treatment. He said to me,

“The easiest thing for the both of us would be for me to whip the bloody thing out, it would only take me about 40 minutes and you would probably be sorted. You do have sludge in the Gallbladder, but theres no guarantee that will ever turn into stones, it is dysfunctional but I don’t know with your EDS, could it cause more harm than good? given the possible healing issues and the fact that you have very slow gut motility and also losing weight, You may need that reservoir for fats going forward, even if it is faulty, so I don’t want to make too hasty a decision, even if it is causing you this pain.”

What he decided to do was take my mobile number, ordered my full documentation and files to his office so he could fully study my history before making his final decision on the matter and if he doesn’t decide to take it out, he said he would at least try to do something for the Gallbladder pain as it is arresting my life at the moment and I have lost a lot of weight since this all started in December 2014. He said he would ring me before that weekend and was true to his word and called me back on Friday the 8th but only to say they couldn’t find my old files! I suggested they may be with the new Cardio who wanted to take over my care while I was in, in October, as he wanted my files too, so I passed on the details and will wait a little further to hear back on that.

In the meantime, I have also heard back from Harold’s Cross RMDU. It had initially been suggested by Prof. Rodney Grahame in London that I get referred there as it could be great to try and get me out of the wheelchair full time but even though I was told in December 2014 that I had been referred up, I had heard nothing back all year. I only found out last week that they had my referral all along and that they wanted to admit me in May 2015 (Last year!) but due to a mixup I never got the appointment.

Mistakes can happen and it is sorted now, they want to admit me on the 8th of February for my first weeks trial where I will get intensive, Physiotherapy, Hydrotherapy, Occupational therapy and daily pain management techniques to help me live long term with my illness and hopefully get me more mobile, all the while being under constant nurses and a consultant rheumatologists supervision incase health things go south and they can refer me to a local hospital if that happens.

They will admit me for a week, Monday to friday and I will be sent home the weekend and brought back in again the following week if it is deemed necessary to continue the treatment. I have heard lots of reviews, many mixed but mostly positive, so I am interested to see how it will go for me, of course, I will report fully on how it goes and if I found it beneficial and suitable :)

Until then my next 2 appointments are on next Monday the 18th of Jan for a Pots Clinic check up and then on the 28th with the Prof. Pain Specialist who will give me some Greater Occipital Nerve Blocks (into the base of my skull/top of my neck) and Sacroiliac joint and hip Steroid injections.

It’s all go until Harold’s Cross kicks off and I hope to have a couple of blogposts up before I go up, so keep your eyes peeled and as always, THANK YOU so much for taking the time to read :)

Lette (Fainting Goat)

Happy New Year 2016!

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Hey everyone HAPPY NEW YEAR!

I wanted to take this opportunity to thank everyone who reads and interacts with this page, and also to say that I am sorry I have been distant as of late but as usual I can only blame the illness with the physical restraints it causes when I have bad days (which are very frequent) and the lack of motivation it causes too!

I was admitted to hospital in October and December just gone and since coming home I haven’t been able to sit upright at the desktop for any length of time to update you all and for some reason my WordPress blog app on my phone wont work anymore, I think it needs an update or something! I also have regular hospital appointments starting from tomorrow until May so this year is busy with doctors and consultants already! I will update you on all of this in the next week :)

Anyhow, I am going to be making a little routine in my week going forward to allow for more regular updates and scheduled posts that can be planned in advance. That’s the plan at least!

Some of the more detailed researched posts I am thinking of adding in the next few months include:

POTS Tips: Updated Life Tips to make living with Dysautonomia and Pots a little easier.

Vaccines and Pots – Is there any connection? – an in-depth look at the real science, possibilities and organisations involved.

Can Diet Affect/Help With Your Symptoms? – Discussing diets and intolerance’s involved in our health issues.

Does Weather Really Affect Your Symptoms or is it  a load of Woo? – A look at the science behind how weather and air pressure may affect some peoples symptoms, and here’s why!

How Best to Navigate The Health Services System in Ireland – With many, many updated links and resources.

Exercise and Physio for those with EDS or Dysautonomia – A post from an experienced Fitness Instructor who also has EDS and POTS on how best to exercise, stretch and care for your body with these conditions and when is best not to exercise altogether! ( Ok I wont pull the wool over your eyes, it is me, but I actually do hold an Irish fitness Instructors qualification and have more than 10 years experience in the gym and exercise industry in Ireland believe it or not – yes, that was before anyone realised I had EDS! I will explain all in the post!)

If you would like to add or discuss your experiences or opinions in relation to any of the blog posts above, please add a comment or get in touch via any of the ways below and I will be sure to add the information required or contributed to the posts :)

Please bear with me, there is only one of me and as always, if anyone would like to help, suggest topics or discussions, contribute or add anything to the blog, please just get in touch anytime and I would be delighted to add your entry to the blog :) The email as always is irishpotsies@gmail.com and the Facebook Page and Twitter are very regularly updated too so lots of ways to get in contact :)

Again, thanks to all of you for your support throughout 2015 and the previous years since this humble little blog started in 2011, I greatly appreciate it :)

Lette – The Fainting Goat – xxx

At Least Give Me Time To Respond To The Message!

May I firstly start by saying the following:

Please understand that only one person runs this blog and the associated Social Media pages at the moment and as well as having a life outside of the interwebs, I am also chronically ill with EDS, Pots, NCS, A Seizure Disorder and Gut Dysmotility. Unfortunately this means I am not always available to answer a message, an email or a comment immediately, but I always do get around to answering them usually within a couple of days at max. I get utterly elated when I can actually help someone out or give any advice or help that I can and I have made some lifelong friends through raising this awareness, but please understand, I may not be able to reply straight away.

The reason for this particular post, which I never thought I would have to explain myself about, is because of the following incident this week:

A few days ago over on my ‘personal’ Facebook profile, NOT the Irish Dysautonomia Page or the Support Forum, but my personal page. I was sent a friend request by someone I had never seen or heard of before, I checked this person out and saw that she was from Limerick, other than that there was suspiciously very little else on her profile but considering they are from Limerick, usually people know me through my photography or art past so I accepted without giving it much further thought.

Within a couple of minutes of accepting the friend request, she messaged me saying the following (I will add the spelling mistakes and all!) You may see the original screenshots at the bottom of this post:

Timestamp: 19/10/2015 19:24
“Thank you so much for accepting my friend request, I read your piece on meeting Professer Rodney Grahame, it was so informative, I have got an appointment to meet him next February but can’t take it yet as I only rang the travel abroad treatment scheme today and they said I can’t take it until I get approved first, I have Elhers danlos type 3 and livedo reticularis but my consultant ,Dr (Dr’s Name) in croom hospital thinks I might have vascular,and that’s why he is sending me to London,once again thank you for your article, I hope you are feeling ok today, xx(Person’s Name).”

Please take note that nothing specific was asked of me and as I was quite unwell at the time, I did see the message but decided I would reply a little later that evening or even the next day when I was physically more able to do so.

Just one hour and 26mins later, I receive this:

Timestamp 19/10/2015 20:50
“Hi, I must say I’m very disappointed as I was expecting a reply to my message, if you are supposed to be the Founder of Irish dysautonomia awareness,people like me who are newly diagnosed and need some advice and support as this is life changing ,will be really disappointed with your lack of response,clearly you are all for yourself.!”

Not only was I very taken aback at the entitlement of it all considering, no advise was specifically asked for anyway and why should I have to reply within her 1hr 26min expectations? but when I tried to write back to that message, this time within seconds of getting it, she already had me blocked! Meaning I couldn’t respond to give an explanation (which I feel I shouldn’t have to but I was willing to respond gently anyway) but I was never given the chance to even defend myself and I was hurt at the fact that I had done absolutely nothing wrong to deserve that only give myself sometime to recover in my own life before responding.

If I wanted to I could very easily name and shame this individual, I have the original screenshots and everything, but unlike this person, I have a little more respect for people than that! Take a look at the screenshot of the chat below and you can see it all for your self including the times.

 

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I adore this blog and trying to raise awareness of these conditions. I love the interaction between the members of the social network pages and as I said I have made wonderful friends through this.

I am not an expert, this is not my full time or even part time job, I do this when I am able in my spare time for the benefit of others, not only myself.

All I ask is that people like this particular lady should know how to respect other peoples time, efforts, illness and personal lives outside of the internet.

Gladly, I have never had this experience through Irish Dysautonomia Awareness before, Most people are rational and understand. For that I thank you so much.

I wish I could be more regular with posting but I do the best I can within the limits of my illness! :)

Thank you for taking the time to read my humble efforts.

Fainting Goat (Lette)

Blog Awards Ireland Long List Nominee!

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I am delighted to announce this humble little bloggie made the Long List in Best Health and Wellbeing Blog category in the Blog Awards Ireland 2015!!

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This is only a start, The long-list will be further reduced to a short-list, which will be announced on the 2nd of September 2015. The shortlist will then be opened up to a public vote which will begin on  7th September 2015 and stay open for 2 weeks. 

So if we make the Shortlist, which I think is a bit of a longshot, I will be onto you all again for a few possible votes! :)

This is only a small step but I am delighted because any cause for awareness of this condition is so welcome and needed.

Thank you to everyone who put this blog forward, I greatly appreciate it <3 <3 <3

Stay posted to see if we actually get anywhere! ;)

Fainting Goat (Lette)

A Year Today!

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Can you believe it is a year today since I took my first trip over to London to meet with Prof. Rodney Grahame at the Hospital of St. John and St. Elizabeth?

While I was there, I had some tests and I received a confirmed diagnosis of EDS (Ehlers Danlos Syndrome) Hypermobility type with Gastro issues. You can read the full blog post I did about that experience Here.

The diagnosis and treatment plan I got there proved invaluable to me here in Ireland to help my Doctors treat me and even still, I am still waiting for my Harolds Cross appointment to help me get back walking!

I was due to go back over to London for further tests and much needed treatment but I have been too unwell and practically housbound when I am not in hospital over the past year to plan anything. I have been admitted to hospital 5 times since my visit over and I also have been diagnosed with Gastroparesis in that time.

However, things are getting worse especially in the Gastroparesis area of things and I still need to get back for the treatment as soon as I am well enough to travel and make plans.

The Medical fund is always open if anyone would still like to contribute or even just to share the link, I would greatly appreciate it, because without it, it would be impossible for me to pursue the correct course of treatment as there are no EDS specialists anywhere in Ireland and traveling abroad is not fully supported at all under the HSE travel abroad scheme.

I would just like to take this opportunity to say Thank you to everyone who has helped so far, to my family and friends and especially my amazing husband Keith. You have all been so supportive and helpful and I couldn’t have done it without you :)

Thank you,
Fainting Goat (Lette)