Tough week

I've got a lot of catching up on my blog to do .. so i'll start with the most recent and work backwards hang on in there!! So the time finally came when i would start new medication MTX (a chemotheropy drug). My first in stings were i dont want to take this drug i do not want to put this medication in my system. I talked LONG and HARD with many medical personal from my GP to my Rheumatologist to my Cardiologist to my specialist nurses they all said the same give it a go Vicky lets get you feeling better. Now ive known my GP for many years he was the one that orginally told me i had Rheumatoid 4 long years a go, so i trusted his judegment. Ive know my cardiology team for 10 years now and to be fair i trust them with most things well in fact everything not just my heart but every thing if i have a problem they are the first people i go to for advise and reassurance with regardes to health matters and even when my mother passed away. I trusted them i'd be ok! Everyone told me the same, you've been through so much Vicky you will be fine. So Wednesday came, i wont lie i sat there with Tracey and i cried and i um'd and ar'd about the tablets i cured people mainly my doctors! Then i took the plunge one tablet two tablets and that was it my journey had started. I tried some food after the tablets what a joke it made me feel so sick it was aweful, we went for a hot chocolate as i didnt want to be on my own for the first few hours and you know the smell in the coffee shop and me want to puke every were, it wasnt nice!! The day continued i felt so sick bringin up some food but i kept going. Thursday it got worse my head was so foggy i wasn't sure what my name was lol my head hurt as if id been on a week long bender! I felt sick my joints were flareing i was so so tired. My stomach felt so dodgy like a constant fizz in the pit of my stomach too Friday came still the same no better .. the weekend came and went still feeling the methrotrex hangover! We get to monday my throat's hurting i feel so darn low emotionally and physically time to see my GP he tells me i have a throat viras which hasn't helped my MTX first take. My rheum nurse says its the end of the line for MTX and me and if im honest i dont want to go through that week again it was the worst i've ever felt not sure i could do that every week for the rest of my life. Do i still trust my doctors of course i do .. will i listen to there medication advise again .. we'll see, lets hope next time i dont feel so darn bad!! I would also like to mention the help and support from my family and friends this past week so many of you to name you know who you are you're all fantastic and i love you all THANK YOU This week has done one thing for me proved that i may be single and living life on my own but if i can get through that without a man holding my hand well hair while im sicking it up then im a dam good fighter and i can survive anything. xx

Its been a tough for months

Hello all, Since my last blog ive had a really tough time both rheumatoid and personally but things are starting slowly to even out again now, so though i'd give you an update on the rheumatoid. So the one big news i have is that my consultant told me i have Mild Fibramalgia which seems to be quite common with people who have rheumatoid so i've tried not to let it get to me so much, its just another obstacle i need to over come. Secondly is that i have decided that after discussions with both of my consultants and understanding the pro's and risks that it is time to take the risk the medication it is scary to think that i will be on these drugs. But my consultant has introduced me to the whole team so i know them by name and sight which was a nice touch. I can not really put fully into words how i feel nervous, scared, apprehensive all come to mind but ultimately i am scared! I will be on methrotrex and a biologic and see how that goes. This means an aprox 3 tablets a week and self injecting myself although i'll have some one else do it for me! I'm still coming to terms with this news but it will sick in eventually. Thirdly i went swimming for the first time in a while which was great i managed to do a couple of lengths certainly got my heart going! I felt so happy with myself but what i enjoyed most was sitting in the hydro pool first so relaxing on the joints! I am still fighting and proud of raising Rheumatoid awareness Keep strong all xx

Social media brining rheumatoid suffer's together

When i was diagnosed just under four years ago, i felt very a lone and that no one understood what it was like to be me. Now 4 years later my friends and family have become more supportive but they will never fully understand. I needed to speak to people who really understood what it felt like to live with this condition. The modern world lead me to Facebook and Twitter which subsequently lead me to meeting some amazing friends who really do understand and the great thing is they are from across the world and although our medication and treatment is different the symptoms and pain is the same and we get comfort from each other. The great thing is with insomnia one of the many things we go through there is always some one on line to talk to about your concerns or pain. We celebrate achievements together and are there for each other when things are bad. Social media also helps to get out messages out about what rheumatoid actually is i think it's fantastic and one good thing to come out of social media. V xx

Driving

Good evening all, Today i drove my car for the first time since the end of last year due to flares. I have to be honest it felt amazing to be back behind the wheel again, my brother was in the car stressing out as i was driving lol! It was a little weird to be behind the wheel again my hands did hurt a little bit but i think thats because i havn't done so for a while. Now its been a few hours since i drove and i have not gone into a major flare up so i feel really happy and relieved. hugs xx

Feeling trapped

So ive been thinking about stuff these days few days due to talking to several people with in my team and it just cries out how trapped i feel. Pre-rheumatoid i was different i could go to football matches, i could go shopping, i could go on days out on holiday even at the drop of a hat i did what i wanted when i wanted i was maybe you could a sper of the moment kind of girl.

Now my life is so different i just dont know when im next going to have some fun, i try to think positive but deep down i feel so trapped in this small town were transport is shocking i can not even use the train station because u have to go over a bridge! The buses are just irregular and not great for the wheelchair anyway. I can not go/do anything on my own and it winds me up i have needs to do things like any one else, i want to go and cheer on my football team, i want to walk around the shopping centre for hours just because i'm a girl! I want to wake up and think you know what i'll take a trip to the seaside today because its a nice day no i can not do any of that instead i have to sit in these dam four walls and if im not in these four walls im sat in a stupid wheelchair unable to go/see what i want to do being "taken" by some one else .. what life is that? it truely is so fustrating.

xx

hands

So this post is about my hands ..

Before i got rheumatoid i had normal hands over the past 4 years they have deteriated because of the way in which the condition works attacking my joints. Unfortunatly i never thought of taking pictures throught the past 4 years but i have some pictures now which i'd like to show you.

This is a picture of my hands 12 months ago as you can see there is damage and this is my hands not in a flare, they have got progressivly worse. and the second picture stuck in a fist is my right hand.




Sorry for the pictures being out of place, im still getting use to were they go when i upload them on to my blog so please bear with me it will get better

xx

my knee

Ok so this post is simple about my knee and showing you what happens during a flare, as you can clearly see it becomes enlarges and painful. What you can not see is the heat that comes off the joint, you can feel the heat through the clothes you are wearing.

xx

ra joints

One of my friends Tim has posted this on facebook and i asked him if it was possible to post it on my blog.

As you can see the left hand is a normal joint like everyone else's, the second joint is that of a person with osteoarthritis. Finally you reach the right hand picture which is rheumatoid joints as you can see they are swollen and there is bone damage.

I hope that you find this picture interesting x

My heart

So after 2 long years and a few days of serious worry the time came for me to go back to my heart hospital to see how it was, i was scared and worried but i knew it had to be done.

I was up at 8.30am to get ready for my day. I then went to the bus station with my brother to await the bus. Lucky a bus came earlier than expected and so the journey began a 1 hour journey to Birmingham it was quite and long! We then had an hour to use so we popped to the bullring and had a hot chocolate and then we looked around a few shops to see if there was anything i wanted!

We then went to pick up our tickets for the journey to London Euston. We got on our train with help from network rail workers for a ramp. For the next hour and a half we made our way down to london it was a good journey. We arrived at Euston and eventually wad helped off the train by a virgin representative which was good! We then got my brother's oyster card topped up and then off we went to the bus!

We got the number 30 bus to baker street now you may have guessed my brother has never used public transport in London before and he was really impressed he said its a lot easier to use the buses down here! We then walked to the heart hospital.

After that its a bit of a blur as i saw my GUCH nrews and had a good chat with her about things and then was sent down to have an echo we was waiting around 3 hours! We then went back up to see my consultant as we was going up i looked at my test results and i exclaimed to my nurse well the echo looks good!

After about 15mins i went into see my consultant and i had perfect Blood pressure, 99% sats and heart rate was fine! I am under weight to which he had asked for me to see a dietition again as feels i need better support with my eating. But he said as far as i am concerned your heart is fine and that we could not go for some treatment for my rheumatoid arthritis!

I left with a smile and if i was walking i'd definatly have had a spring in my step! We then got the 18 back to euston and we had some thing to eat although i couldnt eat much because i was so happy with my appointment.

We travled back to birmingham and missed our bus so we waited for an hour then we went bk to bus stop to discover that this was a friday only bus so we had to get a taxi home!

The good news is my hearts in a good state and means medication for my rheumatoid arthritis can now start, happy times :)

v xx

Living with two life long conditions

So many people think it must be so hard to live with rheumatoid and yeah it is but you know its not my only invisible condition i actually have two. Rheumatoid and Techtrology Of Fallots.

So it all started when i was born in the local hospital and shortly after this i was taken to Birmingham Childrens Hospital a sick baby. I had 2 shunts done i was christened in the hospital as they wasn't sure i'd live then when i was 4 years old i had Open Heart Surgery to correct my condition as i had a hole in my heart. I was very sick between 0-4 and spent a lot of time in hospitals and people wonder why im not keen on hospitals or food! I have also had one cardiac catheter when i was younger. Although i had the repair im still likely to need more open heart surgery in the future and will need on going cardiology support.

Then as you know unless your new to my blog i gained rheumatoid at the age of 23 years old.

So since i was young ive known doctors and nurses infact they are part of my life. I mean ive been in hospitals all my life ive been poked and proded by professors, my consultants, by GPs even student doctors its part of life. I had test's done all my life, bloods, E.C.Gs are normal to me and Echocardiograms are just the norm and not forgetting the chest xrays always a joy!

So as you can see its always been the same 0-23 i was use to this constant doctor help and constant doctors involvment in my life. But when i turned 23 it was like OMG i see a lot of doctors because now i have 2 consultants, technically i should have 3 as my hearing isn't great either! I have 3 medical nurses GUCH (grown up congenital heart nurse), Rheumatoid Nurse and lets not forget my Asthma nurse! Then you have to look at the Occupational theropist, the Physiotheropist, the Dietician and even a councilor to help me deal with loosing my mum.

So you see you may not be able to see my invisible health problems and when you do know about them you dont realise the full back room staff thats behind me, helping me stay "vicky" shocking really just how many people are involved. I am so thankful for my team and the work/help/care/compassion they show to me every single day and visit. Also to my old team at the Childrens hospital both Cardiology, Audiology and at the QE in Birmingham Cardiology and my old rheumatology at worcester.

But essentially there are so many other people involved who keep me going ... just so many people to mention they are all fantastic people carer's, general hospital staff, receptionist, pharamcy, support workers, social worker and of course family and friends!

So i may be one person but i have many many people behind me who keep me together and make me smile.

Im use to doctors but if i hadnt been it would have been a shock at 23 to be introduced to the world of medical help i dont think i would have handled sitting in hospitals waiting or the constant appointments.

rheumatoid

Relentless pain

Hard to deal with

Explaining it makes it seem more painful

Understanding makes it real

Managing the condition with enough medication to draw a picture

A day with less pain is celebrated

T he physio always hurts

Osteoarthritis is not the same as rheumatoid arthritis

In the darkest times your true friends are there

Don’t ever give up fighting even when it feels to much

Acting like everything is ok when it’s not is normal for us

Rheumatologists are specialists in our condition

The condition is the same but everyone suffers different

Having rheumatoid doesn’t mean your life is over

Rheumatoid makes you slow down but not stop

It’s normal to wake up and take an hour to get out of bed with pain

There’s light at the end of the tunnel

It’s allowed me to meet some lovely people I’m just sorry we all have rheumatoid

Saver the good days to remember when you’re having a bad day

Rheumatoid Arthritis