Tietze Is A Rollercoaster

Just when you think you're kicking it's ass... it decides to yet again have another flare up and encourage my body give me a short bout of Bell's Palsy just so its kicking me whilst i'm down...


Tietze's isn't all bad though, i had a really lovely girl called Ella message me through Facebook so i finally have met one other person that suffers like i do :-D it absolutely made my day!!! It sounds quite bizarre doesn't it to meet another 'sufferer' and to be happy about it hahaha but it cheered me up.


Also, i passed my years anniversary of having tietze's and boy oh boy has it been a year. I'm missing having a normal life more than ever at the minute. Its absolutely impossible for me to work at the moment and without working i can't plan a future with my boyfriend :-(
Sometimes i really feel for Sean because he's lovely and he deserves the best but my body is so temperamental... we can't plan ahead and work on our plans of moving in together because we need two fairly good incomes and mine is all over the place. Its not fair on him so it kind of feels selfish but i can't imagine my life without him.


In the past two weeks i have had 2 awful flare ups of tietze's. Its been hard for me just to do basic things like getting ready just to face another day, getting dressed etc. The thing about us tietze's sufferers though is that in a way, we're fantastically special... we have tremendous amounts of pain and each day we harden ourselves towards it whereas the average person would be in total agony! When people are ill they can freely chat and complain about their illlnesses whereas we are constantly conscious that we are talking about the same thing which could be boring everyone else because they could practically finish our sentences hahahaha.


I don't know if i'm the only person but sometimes i find myself feeling so alone regardless of how many people i'm sat with or what i'm doing... nobody around me feels how i do and its so lonely... its just one of those things that i suppose i'll just have to grow with it and embrace :-D


On a lighter note though hahahahahaha because i had bells palsy this week... for those of you that aren't sure what it is, its a dysfunction of a cranial nerve VII (the facial nerve) that results in inability to control facial muscles on the affected side- as defined by Google... my personal definition is a paralised fat face on one side that hurts loads and is swollen excessively both inside the mouth and outside making me look appalling! Anyways, when i went for acupuncture this week, she was very concerned that i had this problem and put the needles in throughout my body like usual but put a few in the back of my neck and some in my face!!! This has resulted in me having an awful mark on my face that i can't even hide. I have tried everything to get it gone or at least hidden, hopefully the other 3 needles that i had in my face don't decide to show up to else i'll temporarily call myself the human dot-to-dot hahahaha

Sunday- My Day Of Rest...Literally

Well, i had my acupuncture on wednesday which was incredibly painful to say the least but i know every session helps. I highly recommend acupunture :-). i didn't hurt at all on thursday, friday wasn't too bad but the weekend is proving to be difficult.

Every person that suffers with tietze's is different because what will work for some won't necessarily work for others. Once you have been examined, your acupuncturist should give you tips on what will help you.
I was told:

• relax, relax, relax
• try not to be in a position where you are stressed
• never allow your chest area to get cold
• do not put any cold compress on to relieve pain because it won't help
• only use warm compresses such as a wheatbag

Its definately worth going and giving  it a try. You have to build up your sessions. Its a bit like going on a sun bed i suppose because you'll feel tingly at first but it won't have life changing effects. After 2 sessions, i started to feel the benefits but after 4 i noticed i was getting pain relief for a fortnight!!! (until i had to have a break over the christmas and new year holidays which is rubbish because i have to start building up again).

For anyone in the leicestershire area... this is my acupuncturist and she's fantastic >>> www.acuvitae.co.uk/ariane-thompson.html
 

Slightly side tracked there hahahaha but yes its sunday and its literally my 'day of rest'. Its annoying because i've not chosen to rest to this extent, tietze's decided for me. I have 3 sisters so everything gets a little chaotic to say the least when there's some stress or drama. One of my sisters, flo, has split up with her boyfriend and they have a baby so everything is messy and complicated. Its very hard to be chill when everyone around you is losing their cool. I'm the eldest out of me and my sisters too so i'm quite a focal point when help is needed because our mum isn't around much but nobody seems to understand that I AM TEMPORARILY OUT OF ORDER. Its at times like this when i wish the acupuncturist was living with me so she could see that the 'rules' sound easy but living by them can be difficult and challenging to say the least.

So... i am having an unwanted day of rest simple because i am hurting too much to do anything. I am sat here with my wheatbag right now. I have a dvd all lined up to watch with my lovely boyfriend  and thats after i have laid down and relaxed after slouching just to type this hahahahaha. Absolute madness isn't it! I'm only 23 and i'm struggling to do anything. I had twinges of pain from the moment i woke up this morning but with all the drama surrounding me at the minute.. i've gone from a 2 out of 10 on my pain scale to a 7 out of 10. Its not like a 'normal' flare up because it feels different and i know its been brought on by stress but thats the way the cookie crumbles so i'll deal with it :-) 

Diagnosis- Google Saved My Life

I shall make this as brief as possible...

Like many people, i went to the doctors surgery, sometimes 3 times a week, complaining of chest pain and palpitations (not because i couldn't get enough of the place neither hahaha). It was like a second home. I could spot the 'regulars' out by a mile. It was a bit like being in an unofficial group because they knew me and i knew them.  It was getting to the point where i was embarrassed to go in because i was literally recognised by the receptionists but with some of the states i have been in down there- i'm not really that bothered. All i wanted were tests to find the source of my pain. 
I was on so many tablets that i swear, if some giant hand had picked me up and shook me, i'd have rattled!!! i was on 16 tablets a day, 14 if it was a good day.

Getting to the surgery was an ordeal in itself as i needed taxis then i had to be literally dragged to the appropriate waiting room. Over the course of a year i have managed to see around 10 different doctors minumum and have changed my doctor 4 times. As you can tell... things were going great... NOT.

Anyways, nobody knew why i as hurting so much. The doctors had no clue, friends and family had no clue and after 10 months of being in constant pain, i had an epiphany...
... one of the things that had kept me sane throughout everything was my mobile phone as i had the internet on it so i could see what everyone in the real world was doing. I lay in bed with my phone and thought that everyone else was seeming to have a guess at what was wrong with me and i was a guinea pig with all of my medication because of the amount of allergic reactions i've had so why not have a guess myself. I mean, after having a huge swollen face as well as other allergic reactions AND enough paramedics around me to fill a small bingo hall,  I couldn't cause any harm by having a guess myself could i? That's when i 'googled it'  :-)
It was one of the most nerve wracking searches i've ever done. You know you're desperate when you're down to 'googling it' hahaha.
I typed in all of my symptoms and there the result was on every line and every search that Google produced... TIEZE TIETZE TIETZE.

I couldn't believe it that finally i knew what was wrong with me. I had Tietze's Syndrome. I wasn't going crazy, i wasn't anxious, it wasn't all in my head, infact my brain was fully intact!!!
Charlotte 1 - Doctor 0

I went to the doctors surgery the very next day with everything printed off hoping for a result finally but NO. A huge door was slammed in my face. Apparently tietze's syndrome is very rare and even if i had correctly diagnosed myself with Google of all things, it naturally goes away after 3 months blah blah blah blah blah blah blah.

WHATEVER!

So... i booked myself in with an acupuncture session because i had tried everything else and followed every bit of advice i had been given throughout my journey.

Acupuncture can be very expensive (£35 a session for me) but don't be put off. I went there a complete nervous wreck but i wanted to control tietze's for once and it not have control of me. She examined me and gave an instant diagnosis but said it was chronic.

HALLELUJAH!!!  

Google had saved my life!

A Little Bit Of Background... So You Get To Know A Little Bit More About Me :-)

I just thought i'd let you know a little bit about myself as everyone that has tietze's knows... there is usually something that (unfortunately) brings it on.

... It all started at the beginning of last year, the 23rd January (not something very hard for me to forget). I was at a house party with my friends as well as some people that i didn't know but you always tend to find that at parties. You never know everyone. I'm not very good with meeting new people on nights out though because i'm very sceptic that you're actually meeting the real person and that you're just meeting the drunk version so i tend to stay with my friends and enjoy myself instead. 

In hindsight, i'd do anything to take back being there that night. It is my one and only regret. Anyways, we were all having a few drinks and i was chatting with all the girlies and everything was great. Fun, fun, fun. We weren't drunk at all... not even close, just a little tipsy but having fun catching up on our gossip we had missed during the week and generally having a giggle. I then started to have sudden but sharp and painful pains shoot up and down my left arm. PANIC. It was agony!!! The pains in my chest were unbearable. I couldn't help but try and control the pains in my left arm by grabbing my arm and doing this weird arm grab as if to try and ease cramp. It was very strange. I knew something was wrong so panic started to set in. I somehow got myself to the frontdoor so i could have cold air hit me. I was hoping for it to kick start my body into getting the strength to get home as i ws only a street away and i knew my dad could help. I didn't know what he'd do but my dad has never let me down. I'm a daddy's girl through and through and i just wanted my dad. I don't know what i'd do without him. He's a cool dude and i love him to bits :-) Its all a bit of a blur after that really but i remember dribs and drabs...

I was literally thrown into the back of my sisters boyfriends car and i remember him and my sister saying that they were taking me to Grantham hospital which is a good 25 minutes drive away. I never thought i'd make it because the pain was unbearable.
I have never been religious but you always need a sense of comfort during times like that whether its hypocrisy or not. So, i prayed. I prayed that the pain would stop. I prayed that i would be able to see my family just one more time so i could tell them that i love them. And i prayed that i would be able to be around when my sister had her baby. She was 6 months pregnant at the time and i couldn't wait to be an auntie. I just wanted to see my niece's little face. I prayed that if He gave me all of that, i would happily go.

Things at this point get very grainy as the next thing i remember is being in a hospital bed having blood taken. I was being made to take 4 little yellow pills and the people i arrived with had left. Strange :-S

I remember sleeping lots and waking up for brief spells when i was having my blood presure taken or more blood taken from me.

The turning point of my life came when my parents and sister came to see me in hospital and they found out from the nurse that i had been given a large amount of mephadrone aka bubbles aka miaow aka the drug that is taking lots of young lifes!!!! They had heard from my sisters boyfriend that the people i was unsure about at the party were taking that 'legal' drug at the time and he thought it had maybe been slipped into my drink.
So, the blood tests results came back and i had a total of 7 very dangerous poisons in my blood stream. It was like i was on another planet because nothing bothered me. It was just like a terrible dream and i wanted to wake up.

I didn't realise at the time i had a years worth of misdiagnosis to look forward to and was going to be bed bound for a good 6 months in constant pain plus i was going to have more allergic reactions than an entire ward full of people, so looking back... in that hospital bed, i was in a pretty good place.

Needless to say from this incident, i had long term problems and lost a lot of 'friends' because they were only interested in me if i could go out and i couldn't. I was bed bound for 6 months and had to give up everything i loved doing. I wasn't with Sean (my boyfriend) at the time so my dad was constantly running around after me and caring for me 24/7. It was very tedious and frustrating beyond belief but there was nothing i could do. There's only so many times you can watch the soaps on repeat or even Jeremy Kyle before you actually want to pull your hair out just to give you something else to concentrate on. Bed bound at the age of 22 is not a good look and not very cool. 

I had numerous heart problems and lots of pain. For all of this i was on heart tablets, blood thinners, stomach pills and anxiety pills to stop all of the heart palpitat

ions and the panic that came with them afterwards because sometimes they were really painful.

Not many people can say they've had 8 pills for breakfast with a good swag of Mucogel to wash them down just to stop them burning holes in my stomach!

All of this just because some idiots put something in my drink and i was unaware

Here was my usual breafast- what a way to start the day!

As we know, tietze's syndrome needs a chest injury or trama to occur and this was mine...

Where Everyone Begins: Here's My Story...

So, here i am starting my very first blog about me and my Tietze's syndrome. I am completely new to all this blogging but i'm assuming that every blog has a story behind it on why it came about and why the person decided to start in in the first place. To not break from the normal, i shall follow suit.... two simple words... TIETZE'S SYNDROME.
Most of you reading this will automatically know what i am talking about otherwise you wouldn't have stumbled across me but for those that aren't sure.. tietze's syndrome is defined as the benign inflammation of one or more of the costal cartilage of the rib cage, causing pain in the chest and back. That is not my definition though.

Tietze's to me is so much more than just an "inflammation of the costal cartilages." Tietze's is the one thing in this whole world that keeps me going round and round in circles, unable to do the things that i love with the people that i love and with my perfect boyfriend of which none of this would be possible without because he's my strength.
Tietze's keeps me in this stupid routine of struggling to get up in the morning, pain killers, heating up my "teenage wheatbag" (you'll come across 'him'), taking some more pain killers, double wrapping a scarf around my neck, even more painkillers and then struggling to sleep. It sounds totally bizarre but other sufferers will know where i am coming from.

The only way tietze's syndrome has benifited me is that i now appreciate and value everything so much more and i take nothing for granted. It has taught me to be more understanding and patient. It takes something literally life changing like tietze's to give you this sort of perspective and its extremely hard to understand unless you have experienced it or something similar yourself.

I am in no way at all looking for sympathy. I just want to share how my life has changed since i was diagnosed with tietze's. One thing i would love from this though is contact with other sufferers as there doesn't seem to be many methods of treatment and i don't know anybody that suffers from the same condition.

Charlotte xx



My Teenage Wheatbag



>>>>>>>  I have attached a piccie of my "teenage wheatbag". Its simply a bag of wheat that my boyfriend brought me that i heat up in the microwave to ease my pain. Its nothing special but i couldn't live without it i'm afraid :-S