Updates and Everything Falls In March!

I have been so unwell over the last few months that I have missed and had to reschedule a lot of hospital appointments and now they all seem to have come in March!

I was last admitted to hospital in November last but never got around to writing about it, I was in for a week with another bout of agonizing pain in my right side and gut, all stemming from the Sphincter of Oddi Dysfunction/ Gallbladder pain I had been having all along and that already hospitalised me over 4 times in the one year previously. They took real note of my weight loss this time and started me on new calorie drinks, some new meds, as well as doing some further tests, ultrasounds and abdominal X-Rays all leading up to a second ERCP on the 28th of March, of which I will write about below!

Yesterday I had a manual wheelchair assessment with my Occupational Therapist, I have now been measured and fitted for a new manual chair as my current one is loose, rickety and near impossible for himself and myself to push, not to mention that it is far too big for me at a size 18 where I need a size 14 or 15. Yesterday, I was fitted for the new Invacare Action 3NG  (In Ocean Blue!) and have been put on the funding list for it, which means if approved, I will get the chair through the HSE but if not I simply wont get it at all, especially since I was already approved for a new Motorised Wheelchair (Invacare Spectra XTR2 Pictures Below) a few months ago (But is only good for outdoor local use and we do not have a modified car to transport it so I need a manual one to use in the home and transport) There is no guarantee that I will get approval for the manual one, We will just have to wait and see.

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March kicks off with my birthday on the 5th, I have nothing planned only to celebrate with hospital appointments which start on Monday the 6th with a follow up appointment with my doctors who look after my Pots care in UHL. This usually involves looking at the current meds I am on, seeing if they need an update, they ask about my symptoms to date and see if I require another Tilt Table Test or some other tests etc. This will have been my first ‘Pots’ appointment in over a year now so it will be good to catch up and see if any changes are needed.

 

Wednesday of that same week, the 8th, follows with a Urology appointment to check my kidney and bladder function. This Urodynamics Test needs to be done every 6 months or so now that I rely on catheters for painful urinary retention, it can leave you more prone to kidney and bladder infections and kidney dysfunction so that needs to be checked frequently to try and catch infections and Kidney dysfunction as early as possible to prevent any damage.

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Image of a Type 1 Arnold-Chiari Malformation. The cerebellum has descended 7mm and there are herniated cerebellar tonsils into the foramen magnum. – Wikipedia

The next day, Thursday the 9th, I have an MRI of my neck and spine, as ordered by my Pain Specialist, to try and rule out Chiari Malformation or other complications because of the severe pain and headaches I am getting coming from around the base of my skull/ top of my neck area, I already get ‘Occipital Nerve Blocks’, for that and ‘Sacroiliac Joint Nerve Blocks’, for the pain I get in my lower back and hips, but I find these nerve blocks are only helpful for a very short period of time (sometimes, if at all!) and are not advised for long term treatment. I have been getting them on and off for over 3 years now altogether as well as continuously taking two types of Opiates (Fast and slow release), meds for neuropathic pain, anti-inflammatories and also muscle relaxants, daily, even with all of these and the injections there has been no proper ‘cure’, especially for the severe neck and head pain, if anything that has gotten worse, so he wanted to investigate that further. We spoke and he explained that he understands that EDSers usually don’t show any evidence of Chiari during a lying down MRI, it is preferred that an upright MRI is performed for a more honest view, however there is no upright MRI in Ireland, one of the closest being in London. I may not need an upright one at all, we will see what the lie down one shows first but he said he would refer me to London if needs be. I will also be returning to London, (privately as none of this is covered by the HSE!) to see another GI specialist that specialises in EDS very soon and I will also see what that specialist suggests I do because the pain and headaches have me bedbound most days now and have worsened my quality of life, where it was very low to begin with! 😦

The following Wednesday the 15th I am back down to Cork University Hospital to see the new private GI specialist I started seeing in November just gone. I won’t mention Names here but, he was recommended to me by a good few people on the Irish EDS related Facebook Pages stating that he is an excellent GI specialist who is very well read up on EDS (Also having studied and worked with the private GI Consultant who specialises in EDS, in London, that I had already heard about (and spoke about in the previous paragraph) and had planned to go and see.) It was recommended that I see him before going straight to London as he can do (in Cork) a lot of the tests they do in London, so I said I would give him a go, and I am so glad I did.

I have to say first that My Limerick GI Team in UHL are fantastic in that they have tried almost every test they could to see what is causing all my gut trouble. Since starting all the GI investigations in December 2014, up to now, they found out that I have ‘Gut Dysmotility‘ and ‘Sphincter of Oddi Dysfunction‘,  but beyond medicating and treating me for those, they do not know what is causing my Nausea, Vomiting, Trouble Swallowing and Severe Gut Pain that has hospalised me more than 4 times in the last year, nor do they know why I have lost over 3.5 stone and continue to lose weight even though I am keeping my calorific intake as high as possible on as many days of the week that I physically can. The team have read up on EDS where they have needed to and continue to educate themselves as we continue to investigate (The tests in Limerick are ongoing, even with another ERCP Operation with Bile Duct Sphincterotomy (where they cut the muscle) at the end of this month) but I feel we are still coming to a dead end, Especially when the symptoms have eased only a little and ultimately continue to cause daily trouble and the head GI specialist of the Limerick Team came to me already and said that it would probably be better if I went to London to see what ‘The EDS Experts’ have to say. So on hearing about the GI doctor in CUH who knew his EDS, I made an appointment and went down to see him and get his advice before I decided to go straight to London.

 

The first Cork appointment came in November and I was pleasantly surprised when I met him. He was very well read with regards to EDS, listened to my full medical history, symptoms, complaints, procedures, tests and operations that I already had. Went through the medications I was on and went through some with me that I had never heard of before but he wanted to do a few tests and X-Rays before changing my medications. When he heard I was interested in going to the GI specialist who he trained under over in London, he was delighted to refer me over and suggested that it was a great idea to get his opinion as he would have the most expertise when it came to treating GI trouble in EDS patients and he thinks this London specialist should be able to help me.

He immediately wrote up a referral letter as I was there as well as booking me in for some new tests in Cork hospital that are not available in Limerick. He said these test appointments would be sent to me in the coming weeks after the appointment and sure enough, they did, they came through very fast, a lot faster than I have experienced in Limerick. I had a Barium Swallow X-Ray done in January and still waiting on the results of that which will probably be given during the clinic appointment I have on Wednesday the 15th of March and I am currently waiting on a Gastric Emptying Test appointment which should arrive, I am told, in the next few weeks. Either way I am very impressed with this Cork based GI Specialist who knows his EDS, I will certainly stick with him, as well as the Limerick team, for now while I wait for my London appointment to come through.

Not finished yet! I have a Gynae appointment in the Maternity Hospital on Monday the 20th. Then that Friday the 24th I have an EEG back at the UHL and finally, The Big One! I have another ERCP operation thingy with a Bile Duct Sphincterotomy the following and last Tuesday of the Month, the 28th.

 

The ERCP and Sphincterotomy is to treat the severe pain, nausea and vomiting I am having because of what the GI doctors in Limerick think is Sphincter of Oddi Dysfunction. I have written and You can read about SOD and the ERCP procedures HERE.

I have already had the first ERCP procedure where they injected Botox into the SOD and you can read all about how (Kinda bad, though it inevitably worked!) that went HERE.

and that’s it!! That covers all appointments for March only! Every month there is usually something and it feels like, I only get out for doctors appointments these days! but what can you do?! 🙂

Lette xxx

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

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*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 😉