Off To London Again!

Finally I have a date set to go to London for a consultation and possible treatment with a Neurogastroenterologist who specialises in EDS named Prof. Qasim Aziz at The Princess Grace Hospital.

I will be flying out on Saturday the 13th of May early Morning and the appointment will be at 12:30pm in London. I am going, not only because I have been recommended by my doctors here, both in Cork and Limerick that I should go for advice and more targeted help by a professional who knows EDS but because of all the trouble I have been having with my gut related issues, by far my gut problems give me the most trouble and upset with almost constant pain, nausea, vomiting and weight loss as well as occasional swallowing problems and my already diagnosed  Gut Dysmotility.

My Doctor in Cork is coordinating his treatment with Prof Aziz in London so I am having a Gastric Emptying Test on the Monday before I fly out which will help as one of the tests that needs to be done before going over. I have already had a Barium Swallow X-Ray done in February and thankfully that was all clear, so thats another test already down!

I am really hoping Aziz will help me out if he can, it would be great to finally get some sort of relief from all the symptoms. Even if he can get a treatment plan sorted that my Doctors here in both Cork and Limerick can do more needed tests and know what more to do with me, that would be a help in it’s self but he may also want me to complete treatment or tests in the UK which I can’t plan for until I know if that is even happening, so I will have to wait and see and I will keep you all posted as usual.

Keith, being my carer as well as my husband will obviously be going with me as there is no way I would be fit or healthy enough to do it all by myself.
Even as it is we have the flights over booked but won’t be able to book accommodation or flights home until we know more from the appointment, as Prof. Aziz may need me to stay over for further tests etc. So we will leave that until the last minute when we know more.

That’s kind of it for now until we fly over and it won’t be long before we will be at the day, it’s going to be a long day traveling for me and I am not the healthiest at the moment, I have had to cancel going to London from the last time until now as I wasn’t strong enough to go for a long time, but I can’t wait any longer and it must be done now. May was the closest appointment I could get so I took it.

I want to take this opportunity to thank everyone who fundraised and helped with my medical fund over the last while to help me get there, without you these trips wouldn’t be possible and with no EDS specialists in Ireland, with I as well as others fast running out of any help, we have to travel for treatment and help as we are completely alone here, medically, in Ireland.

Thank you all once again and I will keep you updated on everything that happens.

Lette (Fainting Goat!) xxx

Saturday Submissions – With Stephanie Baxter

I know, I know! I am late with this again, I am so sorry, I just couldn’t get to the computer the last few days because of the health once again. I will have to do them during the week and have them publish automatically on the Saturday morning. I will do better, I promise!

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In this weeks Saturday Submissions, we speak to a good friend of mine that I know through Facebook as ‘Tuffy’, She has a host of chronic illnesses and this is the first ever telling of her own story. So lets hear it for Tuffy and give her a warm welcome to the world of Blogging! 🙂

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Saturday Submissions With Stephanie Baxter

I’ve never told my story before because it’s weird and I’ve ended up with a bunch of rare things. People tend to get either bored or uncomfortable with the full version. I’m having to come up with some creative reasons why I’m in my wheelchair.
I’ve summed up with a Sword fight. I don’t get such a fun reaction. I’m thinking of changing it!

Anyway, I’m an old lady (48) But I’ve had issues with my heart palpation since I was 17 or so. When I was 20 I was pregnant with my first kid. The doctors wouldn’t listen to me. The palpations were so bad anywhere I would go I would have to stop everything for about a minute. Only because my heart was beating so fast and hard. Talk about a massive head rush! But I was also told they were side effects of pregnancy.

So, after a few years and another kid (I really was terrified of dying during birth) everyone around me told me I was fine & if the doctor wasn’t worried, why should I be? Ok First Lesson people!! If it’s your body and Your scared, Start Screaming for Anyone to listen!!

I put up with this for 10 Years before I Finally was diagnosed. I had to get a blood clot first, But hey, your body has to do what it Needs to do. So, I’m 27 years old and finally I’m seeing a Cardiologist. I told him that my heart goes super fast. He asked me if he could check it out. I thought, heck why not. It’s probably nothing.. Wrong Answer!! I’ve got stickers all over my chest and this readout starts printing and the Doctor gets All excited!!!

OK, Lesson number 2, When a Doctor gets Excited, be Scared.. it’s Not good News! I have an inherited disease called (WPW ) Wolff Parkinson White. My electrical pathways were kinda not working right. So it was (is) making my heart palpate.

The doctor told me I was in the 10% of the population, oh and I needed an ablation right away or I can go into a heart attack and die. Yeah, my inner voice yelled at me for listening to all those Stupid people!! Who in the end, didn’t really give a crap.

As I said, listen to yourself… so, I went in for my first ablation. Well, it ended up 2 of them because the first one didn’t quite take. After about 2 or 3 years I started taking Hawthorne supplement. Because my palpations started to come back.

Then after a few more years and a Great deal of stress I was Finally diagnosed with Pots and the WPW came Roaring back.

Now just so we all know, my paternal grandfather had wpw, they didn’t have a name for it in the 2nd war, he would be driving his supply truck in Germany and a bomb went off, he just ended up in the ditch with “heart attacks”. Which is what they were. But there was nothing they could do for him.

Personally it really sucks! Plus the pain is right Nasty. Chest pain and all. Back to me, I got to play with beta blockers & calcium Channel blockers to keep my heart under control, it just ended up confusing my heart, it was up to 300 then it would drop to 30 in just a few seconds. Thus me checking on the floor making sure it wasn’t lonely. I Never did get to pass out, but ya know.. I’m a blonde asthmatic dyslexic.. why add on to that??

The doctors got mightily concerned and decided I needed a pacemaker. My first. Wow, I got to name him. Something fancy, so I came up with Engleburt Humperdink! (You young ones look him up) it fit great!! I went in & as the doctors who have been putting in pacemakers for Decades, they put in the first lead.. that went smoothly it was the upper lead they had major issues, my heart took off and I’ve Never seen 2 Cardiologist freak out before. They couldn’t slow down my heart for anything. They never had this happen before. I suppose they finally found the relaxant. Yeah, it’s a fun story. They stapled me together and within 6 months I had to go in for another ablation.

They made me stay awake. All together in 10 years I’ve had 9 ablations. Yes, they made me stay awake during all of them (the first 2 were exception) as I’ve said I’m Really rare and different. I felt every ablation, just as I can feel my heart go into tachycardia. The last ablation they tried to make me completely dependent on my pacemaker. They were only 95% my heart still goes off but now only for a limited time. Few seconds here and there. Nothing like it did. Now I’m dealing with the pots.

But I found out more family info. My mother had the same thing, so does my niece’s (2) so now I’m finding out its genetic. When it’s genetic the symptoms are severe. Where I Live, I was told that all they can do is just treat the symptoms. I’m getting new symptoms and they are not pretty. So, we moved to a new state for better medical care. My timing couldn’t be worse, Spring is kicking me around like I’m it’s new punching bag. Being bed bound is hard enough, but now we’ve got to find another place to live and paperwork to do plus finding doctors that might just care.

If your wondering, I found Irish Dysautonomia back when I was around 30ish. A Long Time ago!! I found you guys on YouTube. It was the first time I was introduced to what the Crap I really do have. I’m thankful for the support and information that I’ve found. It’s very personal and individual in its attacks.

I’m also bipolar 2. So I’m on a few meds right now. Fludicourt for my blood pressure is the main thing, but then I’m finding out that anxiety is a symptom as well. Which having bi-polar 2 & ptsd Really makes me realize how severe this crap is. I’m very open about my mental health as well as my physical health. I’m one person, why separate? If my stress (anxiety) is affecting my heart why treat my mind and my heart seperate?

So, I’m really big on coping strategies. They Really do help. Anyway, I’m around sometimes on Facebook my name is Tuffy Baxter, I would like to be on Facebook a lot more, but it’s difficult.

Thank you for reading this blog. It is my first at telling this story. I hope if anything helped give a smile or 2. I suppose I shall see you all soon in the funnys!! 😍😍😍

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Thanks hugely to Tuffy for that Blog post, please be sure to check her out on Facebook and make a link and please leave a comment below if you relate to Tuffy’s post 🙂

——— Wanna Be Part of Saturday Submissions?———-

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

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

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

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

 

Saturday Submissions – With Caroline from Living With PoTS!

Hi everyone! I’m Caroline, I’m a 21-year-old student, blogging about life with a chronic illness. You can find me on Twitter , The Mighty , and at my blog Living With PoTS


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Whilst not yet diagnosed, I’ve been suffering from PoTS symptoms for around 7 years, which have dramatically worsened over the last few years. My main symptoms are severe dizziness and fatigue when standing, as well as joint pain (which is probably related to some other undiagnosed condition). Recently, I made the decision to use a wheelchair for the first time, which was a pretty big decision and something I want to talk about.

I want to start off this post by saying that choosing how and when to use a wheelchair is an incredibly personal decision, and this is only my own experience.

 

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Why a wheelchair?

Ever since I realised that there was a genuine health reason for me being in so much pain, and not felt like I was being lazy, I’ve been trying to work around it. Whilst I can manage my day-to-day life relatively well, trips away are a massive struggle. Last month, I had what should have been an amazing trip to London planned for my best friend’s 21st birthday, two whole days of sightseeing, shopping and shows. Obviously, with it being such an important birthday, I wanted to make sure she had an amazing time, and that me being tired and in pain didn’t get in the way.

Worries

It’s safe to say, I had a lot of worries about starting to use a wheelchair. The practicalities: how do you borrow one? How do you steer it? Where are the brakes? The stigma: what will people think when I ask for one? And when I’m able to stand up out of the chair? And personally, admitting to myself that it was something that I needed, on occasions, and that it wasn’t a big deal, that using a wheelchair for a special occasion like this wasn’t making a commitment for the rest of my life.

How did it go?

After chatting to a few friends, and browsing museums to find one that hired wheelchairs, I decided to go for it, and on arrival at the Natural History Museum I went to the cloakroom, signed a disclaimer, and 30 seconds later was equipped with a wheelchair. After a bit of figuring out how to fit me, my coat and way too many shopping bags in it, we were go.

I started off being pushed, but the lack of control really bothered me, so I decided I was going to push myself which worked much better (after a few incidents getting around corners anyway!). Whilst my arms were so sore the next day, I think that’s something I’d get used to.

Practically, it was better than I expected. People were on the whole really polite, happy to move out of the way, and no-one I noticed gave me any weird looks or anything. In terms of the museum it was hard going; I couldn’t see quite a lot of the displays, and trying to find lifts was mission impossible.

Overall though, it’s a big thumbs up for the wheelchair. Whilst it is not something I would want (or need) to use every day at this point, for occasions like this, where I’m trying to pack a lot of activities into a few days, it makes things so much easier. It means I can do so much more, without the repercussions of the next few days, and more importantly (for me at least), it means I’m not impacting on others as much.

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Thank you so very much to Caroline for providing todays Saturday Submissions!
Do you relate to how she felt?
If you use a wheelchair, did you find the initial transfer to using the device difficult?

Please leave a comment and let Caroline know what you think, be sure to check out her social media links above and make a new connection! 🙂

——— Wanna Be Part of Saturday Submissions?———-

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

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

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

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