My Personal Diagnosis Story; Updated 2018

 

Hi, I am Lette and I have EDS, Pots, Gut Dysmotility, Neurogenic Bladder Dysfunction, Severe hearing loss and a host of secondary complications to all of these. I will try and keep this as concise as possible but I feel it is still going to be a long post, please bear with me!

It all started on a Tuesday morning in April 2011. After a lifetime of silly ‘Mickey Mouse’ symptoms that didn’t lead to anything conclusive, I just thought I was feeling a little under the weather.
I got up to shower and get ready for work and as I was coming out of the toilet, I suddenly felt really weak, faint and overwhelmingly dizzy. I called out to my husband who got to me just as I lost consciousness and he caught me before I hit the ground.

We didnt know what was going on, My husband was brilliant trying not to panic but everytime I would come around and try to stand I would lose consciousness again!
He got me to lay on the bed while he called the doctor and got advise to either immediately call an ambulance or get me to A&E straight away.

We opted not to wait for an ambulance as it would be faster to drive me directly to the A&E.

Long story short I ended up staying nearly a month in the hospital under an initial doctor who tried some tests but ultimately seemed to be very dismissive of me and in the end told me to get up out of bed and just ‘walk it off, and you’ll be grand’, great advice to give to someone who was shortly thereafter diagnosed with, ‘a very impressive case of Pots’, after this we had to demand a second opinion knowing something was seriously wrong with me. I couldn’t sit or stand upright without losing consciousness and I was just told to walk it off?!

Needless to say the second opinion doctor took my case very seriously, did many more tests, one of which was a Tilt Table Test and we discovered that I did indeed have Pots and NCS (Neurocardiogenic Syncope) but the cause was unknown. I was medicated heavily for my issues (very low BP, High HR, Nausea, Joint pain, Sweating, Syncope sometimes with respiratory arrest (without breathing), given some lifestyle advice like eat more salt and drink plenty of black coffee to raise blood pressure and sent on my way.

The following months after my Pots diagnosis I was continuously being admitted into hospital and fighting to find a cause for the Dysautonomia, In October 2012 I was diagnosed by a Reumatologist in Cork that I had Ehlers Danlos Syndrome Type 3, Hypermobility Type, which in turn would be the organic cause of the Pots.

My symptoms at the time were progressively getting worse, I was fainting very regularly throughout the day sometimes without breathing which in the worst of cases led to new seizure type activity and short term paralysis in my legs causing long lasting neuropathy. I was getting severe headaches and excruciating pains in my joints, very low BP, High HR, Dizziness, easy bruising, Blue Sclera, Excessive Fatigue, severe nausea and vomiting with gut related pain.

This happened for months off and on without any reprieve until April 2013 where I slowly improved at the start of the year, well enough where I decided to go back to work for Apple Computers from home.

Everything was going amazing until my Pots started acting up, sometimes I had to put people on hold as I hacked into a bucket! The pain in my pelvis, hips and lower limbs became so much worse that crutches no longer supported me well enough.

By August I was in a wheelchair, In September I was admitted to hospital for 11 days for investigations and pain management. The specialist advised that I didn’t return to work.

Things went downhill fast with my health and I soon learned that I would have to fight the HSE with some of my issues. I had to do my own phone calls to start Physio and Occupational therapy as nothing was being done from the hospital side. My Consultant who looked after me for Pots also had some problem with the diagnosis of EDS that I got in Cork, they never took it seriously and tried to convince me that I didn’t have EDS but I only had ‘Benign Hypermobility’, which they said would have no bearing at all on my health or any of my issues!

In July and August 2014 I was at my worst health wise. I was admitted to hospital after being rushed into Resus via ambulance after having a very long seizure. I was admitted again for nearly a month where I ended up in ICU and HDU (High Dependency Unit) because of these seizures. The consultants sent me to Beaumont Hospital in Dublin via ambulance again to rule out Epilepsy of which all was clear thankfully and they put the prolonged seizures down to a major reaction I was having to the antiepileptic drugs they had me on to manage them, I was promptly taken off these drugs and in turn the seizures stopped almost immediately. It looked like the first ever seizure I had may have been a once off dysautonomic seizure caused by lack of oxygen and it was the antiepileptic drugs they had me on that made matters worse.

It was during this time that I decided something had to be done to try and help myself. There are no EDS specialists anywhere in Ireland and the closest place there were any was in London. I started a GoFundMe campaign and slowly raised enough to go to London and meet a Professor in rheumatology who specialised in EDS to get a proper diagnosis that would confirm to my consultants (and myself) that I did in fact have EDS and to get some sort of treatment plan that my consultants here could work off. This trip was a success. I met Prof. Rodney Grahame, got an official diagnosis, a treatment plan for my consultants at home and it was only after I got my letter from Prof. Grahame that my consultants started taking my diagnosis seriously and actually followed the advice given on the treatment plan.

Things started running smoothly for a while with my treatment, I was getting regular physio and occupational therapy, regular pain management and outpatient appointments to keep an eye on everything.

Slowly though, in 2015 things went downhill again and I started having severe gut related trouble. Over the course of the following couple of years I was in and out of hospital constantly, I lost a huge amount of weight, couldn’t eat anything without nausea or vomiting, got extremely weak and fatigued and my seizures returned after a year of being dormant, my consultant at the time wanted to operate on my gallbladder thinking that may be the problem with my gut. Other than that, he admitted to me outright that he didn’t know what to do or how else to help me and advised I seek help elsewhere if I knew where to look.

In 2017 I had to fundraise again to return to London to meet another Professor who specialised in EDS and Gastroenterology, Prof. Aziz. Thankfully since this consultation in London and following the advice he gave me I have improved greatly, with regards to my gut trouble at least.

I still get serious symptoms and there is no cure for EDS. There are no EDS specialists in Ireland and it is clear from my, and others diagnosis stories that there is little help within the health system in Ireland. We are already fighting illness, we should not have to also fight the health system for treatment that should be readily available here and we should not need to travel or worry about organising funds to do so when we are in this state and yet, we need to or we will just be forgotten about.

I worry that my symptoms will continue to flare and get worse as time goes on. I worry something serious may happen and that the doctors here may not be able to help me or others in this situation if that happens. My story had some major up’s and down’s and yet I am not the worst I have heard. There are others out there that have had much worse experiences than I have.

We seriously need an EDS specialist here in Ireland to help us. I am forever surprised by the constant stories I hear of peoples GP’s and hospital consultants not knowing what EDS is. It is 2018, is it really that far fetched to imagine having a consultant here that specialises in EDS or at least some training for our doctors? I think not! #EDS4IRE 

Lette

 

Low Histamine Diet For MCAS and Gastro Related Issues

 

I am so so sorry, It has been months and months since I wrote in this blog but I thought what better way to start back into it than writing about something that has helped me almost miraculously in the last year.

The Low Histamine Diet. 

Last March (2017) I went to London to go to an appointment with the renowned Prof Qasim Aziz for serious gut related problems and weight loss stemming from my EDS. You can read all about that trip Here and you can read Prof. Aziz’s medical report and related advice from my visit Here.

My symptoms included serious weightloss (3.5stone) in a short period of time and strong constant bedridding nausea and vomiting that I was getting multiple times a day as well as excruciating gut pain which my doctors thought was stemming from the gallbladder and were considering operating on it before I traveled over and started Aziz’s amazing advice!

His recommendations then were as follows:

1. Slowly reduce Opioids as they are slowing gut function. Stop, Reduce and increase some medications as explained during the appointment.

2. For small intestinal bacterial overgrowth I have suggested a prescribed antibiotic twice a day for 2 weeks following which she should take a probiotic.

3. I would suggest that she sees a senior pain management specialist locally to consider splanchnic nerve blocks but it may also be helpful for her to have a spinal MRI of the thoraco-lumbar spine to make sure that there is no nerve root pressure.

4. I have given her detailed dietary advice and have generally suggested a diet low in sugar and grains but high in white meat, vegetables and healthy fat such as olive oil. Overall I have also suggested that she should reduce the histamine content of the foods that she eats and have suggested some resources that she can look at. I have also suggested Calorific drinks, vitamins and minerals such as vitamin C, B complex, omega 3 and chelated magnesium.

As soon as I got home I started the diet and calorie drinks straight away, I sorted the antibiotic and supplements a few weeks later but within 3 days of starting the diet I noticed huge improvements already so I was very hopeful!

It has now been just over a year on this diet and though I was only supposed to try it for 6 months I found that every time I reintroduced foods back into my diet that symptoms would start back up again so I have just stayed on it! It suits me and I don’t find it very hard.

So… Has it helped?

The answer is a resounding YES!

All my worst symptoms have actually gone, no exaggeration, My nausea and vomiting is now completely controlled, the severe pain I was getting in my gut that my doctors thought was all the gallbladders fault, is GONE! Actually gone, no more gut pain that had landed me in hospital multiple times, gone! It is just bliss!
My weight has maintained over the last 5 months at 52kg with is fantastic, no more constant weight loss!

As for my other symptoms? Yes they have improved no end too, though I still get dizzy I am nowhere near as bad as I was at my worst! I am so so happy it has worked for me, I can not recommend this diet enough. Though I will always advise that if you are starting any new diet or supplements etc. be sure to run it by your doctor first to be sure it will suit you!

So… How does the diet work?

It works by reducing inflammatory allergens that can make your digestive system swell and get raw as well as not function properly.

Find the diet plan that I follow Here.
How you follow it is as follows:
Anything that is a 0, you can eat as much of as you like!
Limit anything that is a 1,
and outright avoid anything that is a 2 or 3!

That is it! That is as complicated as it gets!!

The diet is restrictive enough that there are few grains, no sugar, no alcohol, no chocolate (Except some white), no tomatoes, no raspberries, no strawberries, no red meat except beef, nothing that will ferment in your gut to name but a tiny few.

However how successful it has been for me means that this restrictiveness is so worth all of it! I don’t find the diet hard at all and I find I am still getting plenty of calories daily.

It really has been life changing for me. It was designed specifically for people with MCAD so those of you who have MCAD or who think you may have it like me (Aziz thinks I may have it) or if you have Dysautonomia or EDS then this diet is for you!

As always get advice from your doctor before you start anything new, everyone is different and what may suit me may not work for you but if you have any questions about this diet, I will be delighted to answer them based on my own experiences from the last year on it.

That is all for now, chat again soon folks 🙂

Woo! Shortlisted for The V By Very Blog Awards Ireland 2017

I am delighted to announce that I just got an email from V by Very Blog Awards Ireland 2017 and Irish Dysautonomia Awareness, this humble bloggie, has made the Shortlist for 2017.

We are now onto the next round ‘The Finalists’ where the blog will be judged on:

• How engaging, entertaining and informative is your writing?

• How consistent is your blog? Is every nook and cranny taken care of?

• How do you compare to other blogs? What makes you unique and stand out?

   

I just want to take this opportunity to firstly thank everyone who put the blog forward in the first place and also thank you to the judges who deemed the blog good enough to make it this far this year, I am delighted.

Thank you all once again and here’s to the next round!

 

Lette (The Fainting Goat)

 

 

 

Blog Awards Ireland 2017

Hi all,
Hope you are all as well as can be, sorry about the little hiatus, I was in hospital and im only just out but more on that in another post, right now I am back for a bit of begging!!

It’s that time of year again where nominations for the best blogs in Ireland go forward for the Blog Awards Ireland and I have just entered this humble little bloggie in for the running.

If you have just a moment to nominate, and thats all it will take, please nominate the blog by scrolling down and popping in the blogs url at the following link

If the blog makes it to the Long List I will be back looking for further support from you so I just want to say a massive thank you to all who take the time to support this blog, THANK YOU!

Will be back soon with another medical update from while I was in hospital and more on my current new diet 🙂 Thanks all 🙂

Saturday Submissions – With MeggioMum

Todays Saturday Submissions is brought to you by MeggioMum A.K.A Heather, who lives with Pots and EDS, be sure to check out her wonderful blog about ‘Two cents from a Midwest Mom’, HERE.

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Potsy Mamas: What We’re Hiding

No, I’m not talking about marijuana, though that would definitely be an interesting article. I’m actually talking about coping with chronic illness while raising a family. Perhaps you’ve heard of Disautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), or Ehlers-Danlos Syndrome. Perhaps you haven’t. But these conditions are very real, and being a mom of four (soon to be five) while living with them is a surreal experience full of both suffering and beauty.

Imagine for a moment that, like every mother on the planet, you have more things to do in a day than are physically possible to accomplish. Now imagine trying to tackle that when your body feels heavy like you’re wading through thick mud, and coffee only makes the feeling worse. You’re exhausted like you’ve just run a marathon… ALL THE TIME. Walking up the stairs is like mountain climbing without oxygen. You have to constantly write yourself notes and set alarms on your phone because your memory is swiss cheese. Complex situations are overwhelming because your brain is in a fog, like when you first wake up in the morning, except it never goes away. The mere act of standing makes your heart jump in your throat, and the smallest movements can dislocate a rib or hyperextend a knee. And you are in significant pain every waking moment.

What happens when you live like this every day is both heartbreaking and inspiring. A series of things start to unfold. The first thing to go is your house. Dishes and laundry pile up, as does random clutter everywhere. You forget to clean the cat box and don’t have the energy to mow the lawn. Your house starts to look like an episode of Hoarders and you’re too ashamed to invite people over or even let your kid’s friends inside to play.

Then goes your self esteem. You blame yourself for all the things you know you should be doing. You feel lazy and worthless. Thoughts creep into your mind like “I’m not trying hard enough”  “I’m such a burden” and “My family must be so disappointed in me.” You curse your body for not working right, and feel resentment towards both yourself and towards healthy people who live more mainstream lives. Your marriage suffers, both physically and emotionally, and you start to tell yourself that your spouse would be happier without you.

The guilt and self-blame are the worst when it comes to your children. You want to give them the world, and instead they don’t even bother to ask if you’ll take them to the park because they know that pained look in your eye all too well. You teach your children to be self-sufficient and independent; more out of necessity than anything else. You are proud that your teens can cook dinner, wash their own clothes, and fix their own bikes. You love how your younger kids can quietly entertain themselves outside in the fresh air without you hovering over them. But you also know that their childhood is flying by at lightning speed while you’re laying in bed trying not to throw up.

Then comes the judgement squad. Doctors not familiar with your condition, random people on the street, your kid’s teachers, coworkers, sometimes even your own family members. Everyone has an opinion on how severe your illness is and how you should be handling it. A lot of people don’t even believe your condition is real because you look “normal” on the outside. Your slurred speech and shaky movements means you sometimes get mistaken for an alcoholic or drug addict, and then treated with open disdain and discrimination.

Some people will be sympathetic, but insist you’ll be cured if you would just take more ginseng, or stop eating gluten, or do more yoga. My personal favorite is when they tell you to think positive and visualize yourself healthy.

I am a strong believer in homeopathy, clean eating, healthy exercise, and so on. But none of these things are magic cures that will stabilize the blood flow to my brain and keep my joints from dislocating. None of these things will keep my autonomic nervous system from misfiring like an electrical short. This is what leads to the final stage: the mask.

You start hiding your condition as best you can from the world. You grit your teeth and smile through the dislocations and spasms. When someone asks what’s wrong, you tell them you’re “just a little tired” instead of telling the truth. People get tired of hearing about your symptoms and start to tune you out. You avoid social interaction as much as possible, and start lying to cover up for it. (“Oh I’m sorry I missed the meeting, I had a flat tire”). You completely shut down in stressful situations because everyday life is already stressful enough, and you just can’t bear any more. You decide it is so much easier to put on the normal facade than wasting energy trying to make everyone understand. (Because 80% of them never will.)

I am trapped inside this body like a butterfly in a cocoon, except I don’t get to break free and fly.

There is an odd beauty to it though. This purgatory of inbetween health- not sick enough to be disabled, but not healthy enough to be normal- is like slowing down and living your life in stop motion. You learn to appreciate tiny moments like the sun warming your skin, the crinkle of smile in your daughter’s eyes, the earthy flavor of a hot cup of tea. You appreciate the people who stick by your side, and love them fiercely for it. You learn to let go of the things that don’t matter; like messy hair,  dirty kids, and judgemental people. You learn to slow down and just breathe.

We are moms (and dads) worth knowing.

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Thanks so much to Heather for submitting this post today, does this relate to you? How do you find juggling parenting and family life with chronic illness? If you relate, please leave a comment or consider following the directions below and submitting your own post to share!

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

All you have to do is tell us a little about yourself and write a blog post (Any word count) 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

Meeting Prof. Qasim Aziz in London

Day: Saturday 13th May

Time and Itinerary:

5:30am – Wake up, get ready!
6:30am – Arrive at Shannon airport

6:35am – Check in
6:45am – Get Breakfast

7:00am – Board Plane with the help of Disability Services

7:15am – Flight Take Off

8:15am – Flight Land at Heathrow

8:45am – Get through security and make our way to the Heathrow Express Train

9:15am – Heathrow Express arrives at Paddington
10:30am – Hang around Paddington for a little while, get coffee

11:30am – Taxi to Consultants Appointment at The Physicians Clinic at Devonshire Street
12:15am – In appointment place, fill out forms and go into meet Prof. Qasim Aziz

Prof. Aziz was very welcoming, I found him to be thorough, interested, very educated and deeply experienced with EDS and it’s comorbidities.

I had everything written out over two A4 pages, Which he said he was delighted with and wished more people would come prepared! It had My Diagnosis, Investigations done to date, Medications, All my doctors listed, Current Symptoms etc. So he went through everything with me.

To make a long story short I was there over an hour, he didn’t rush us at all and listened to everything both my husband and I had to say about all the symptoms, pain and weightloss I have been going through with my Gastrointestinal problems.

He did a few basic tests with me while I was there and then sat me down to explain what he believes is going on with me.

He reckons I am high in ‘Histamines‘, meaning that I am all inflamed and raw throughout my body as a result it all contributes to my various symptoms even outside of gastro problems. He said that a ‘Low Histamine Diet‘, would be of huge benefit to my lifestyle for 6 months and then I can introduce other foods back into my diet.

He added things like, taking probiotics 2 to 4 times daily with the diet as well as the supplements that I may be lacking in like, Vit.C, Vit B Complex, Omega 3 and Chelated Magnesium.

He went through all my medications and changed them about as well as adding some to help my tummy. Apparently a few of the meds I am on to help my gut are in fact paralyzing it, so I have to cut back on those and my opiates as they are slowing my gut function down.

As the LowHistamine Diet is sugar free, he has also changed the Fortisip Compact calorie drinks I have been taking as he said they are full of sugar, so he changed them to E028 Cartons instead.

He mentioned that he has had people like me come into him in wheelchairs and after this diet and the other extensive recommendations he gave, they are now walking, relatively cured and back to work, living a normal life once again as the symptoms are now controlled.

He also said that everyone is different and what may work for one person may not necessarily work for me but it is certainly worth a try for 6 months at the very least.

I still have a lot of research to do to get my head around this new diet but he wrote out loads of recommendations so I know what to look for, I found him to be very helpful.

I have already received his full report, he had it emailled to me within 2 days, by the Monday after the appointment on Saturday, I thought that was very smooth and professional.

14:00pm: Finish appointment and get Taxi to the Hotel.
14:35pm: Check in and unpack and relax for a few hours to recover from the morning.
14:55pm: Pass out for around 2 hours
17:00pm: Wake up and go get some food
17:15pm: Make our way to the food plaza across from our hotel and find a sushi place

17:30pm: Too tired to deal with crowds so decide to bring sushi back to the hotel to enjoy in peace. Then just relax watching TV for the rest of the evening as we were both wrecked and I was beginning to feel really poorly after the busy day. I did ok though but we didn’t get much sleep as there was a Hen party in the room next door to us so it was really noisy at times but either way we got through the night and were up bright and early the next morning, Though we were both impossibly tired and I was barely able to move!

We get up, shower and get ready, check out of the hotel and get a Taxi to Paddington again to get the HeathrowExpress train into Heathrow Terminal 2 to catch the plane.
We grab breakfast and all goes as normal through security and onto the flight.

I always laugh at the sheer difference between the security in Heathrow compared to Shannon, Shannon are so lazy about everything and you literally walk straight through without little hassle but in Heathrow they want to examine every inch of you and your bag, which is great that they are so thorough but the difference in the two always makes me giggle.

Either way we got home safe, landed, went to collect our dog from my parents house and hit for home where we both crashed and burned pretty hard! I know right, just one day and were done, useless we are! I felt incredibly sick and my husband caught a flu on our travels so he has been hit pretty hard too since coming back. We both still haven’t recovered properly!

Next up now is to make sure my doctors and consultants here get a copy of the report he has sent me and to start a food plan to get this diet started once and for all. I am still following the Low Fodmap diet until I have everything I need to start this new Low Histamine diet.

I am looking forward to the adventure over the next 6 months or so with this new lifestyle change, and of course I will share it with all of you as I go along!

Thank you once again to everyone who made this trip possible, John Steele and Mick Dolan for organising the Bowie Gig in February which raised €2000 each for both Zondra Meaney and myself and also to everyone who contributed through my Go Fund Me Page. I am deeply appreciative to all  of you for your help and support, thank you.

Lette (Fainting Goat!) xxx

#REDS4VEDS Vascular EDS Awareness

 

It’s that time of year again where we all try to raise awareness of Vascular EDS, the scariest of all the EDS’s. It is in conjunction with Annabell’s Challenge and originally organised by @TheZebraMom and EDS Awareness Ireland. This campaign has gone global now (Well done to the creators!) so lets keep it going!

1: Wear Red
2: Snap a Creative Selfie
3: Be sure to use #REDS4VEDS
4: Share on all your social media accounts
5: Tag or Share with 3 others so that they will do it too and we can carry on the love!

Thanks Folks

Happy #REDS4VEDS Day! 🙂

Doing a dry run test for London!

So yesterday and today I have been doing a dry run for London, meaning I have to try and stay up for at least 11 hours straight, without bad symptoms kicking in, to be able for my flights and trip to London on May 13th. Sounds easy right?… yeah! I am having trouble and I still have 3 hours to go today!! I usually last about 4 to 5 hours up before bad symptoms and desperate fatigue get in the way and I need to rest in bed again so I need to be able to do this to go on the trip.

The itinerary starts for the trip on May the 13th at getting up at 5am to check in on time and fly out for the 7:30am flight to London, then I have to make it to London and to the specialists appointment at 12:30pm and wont be at the hotel until at least 4pm, so that is 11 hours from getting up at 5am! Then and only then will I be able to rest for the first time on the trip. To anybody else this would be simple but not for me.

I got up at 9 yesterday and made it to 8pm last night, then watched The Expanse and then passed out cold in bed for a couple of hours, I really needed the sleep and symptoms had kicked in pretty bad throughout the day. I simply do not have the stamina and health like I did the first time I went to London so I decided to do another dry run of it today. I got out of bed at 10am this morning and I have to make it to 9pm tonight and I have to say I am finding it tough!

I have the tickets bought for the trip and I really don’t want to have to change or cancel them so I have to be safely able to do this without bad sickness and symptoms getting in the way.

If I do this successfully, Ill let you know, but, I am finding it hard and may have to change the itinerary around a little to be better able to compensate my physical needs, but hopefully that wont need to happen.

Here’s to the next 3 hours, let’s do this!!! (I hope!!)

Lette xxx – (Fainting Goat!)

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

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.

 

 

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