Friday, 30 April 2010

longest day... ever

So yesterday was the day of my second Rituximab infusion. I can honestly say i've felt more than a bit horrendous since the last one 2 weeks ago. My symptoms have been a lot worse with swollen everything so the steroid infusion obviously didnt help!Boo. So had the pleasure of my 4 walls as company for a few days whilst i wallowed in bed but kept spirits high and thinking positive as I was told it could get worse before it gets better! The nausea was the worst as I was so hungry but couldnt quite figure out what I fancied to eat so ate nothing most of the time but had a craving for good old salt and vinegar crisps. I think the tiredness was what hit me most. After I had my first infusion I literally felt like I was on auto pilot for a week. All I wanted to do was sleep which was pants because that was the one thing I couldnt do with the pain being worse at night.
Other than that I didnt really experience many side effects which was good but kept hoping to wake up and miraculously be cured! So yesterday we set off at 6am to get the hospital i am being treated at for my 9am appointment. Just so happens that a lorry and a car decided to have a dance in the middle of the motorway before we reached our destination so we were at a standstill for 4 hours! Well thats just brilliant I thought. By the time we got to the hospital we were 3 and a half hours late and i dreaded them telling me my sister complaining she needed the loo for 6 hours in the car was all for nothing. But they whizzed me in and did my bloods to get the ball rolling. I then, due to the unfortunate events of the morning, felt a little whoozy and needed to lie down ASAP. I felt like I was going to black out so the lovely nurses ran off to find me a bed so I could slump.
The doc came round to see me in the meantime to check over everything and decided i needed to have both knees injected with steroids as there was a lot of fluid on them. Its not a nice thing as you can imagine having a very long needle being jammed into your knees so was not a happy bunny but im up for most things as long as it helps! A few hours passed and it turned out that my bloods were abnormal so the nurses tried to get hold of the doc for the treatment go ahead. They informed me this could jeaporadise me having the treatment today and I felt like crying. I had come all this way to be told I couldnt have it would have sent me into a rage i think! But the doc gave the go ahead and put the abnormal bloods down to the fact I had high disease activity.
The infusion went well and i had my usual hot flushes but felt ok apart from a bit sleepy (nothing new there!) and after all the fun and my mum and sister creating their own library with the amount of magazines the bought we were told we could all jolly on home. By the time we got back it was 10.30pm and we were all shattered but funnily enough I couldnt sleep! Typical. But I was so relieved it was over and I know I wont need another one for at least 6 months now.
Today has been tiring, I have had the wierdest stomach ever and my face feels like a radiator but onwards and upwards for the next few weeks... i HOPE!

Tuesday, 20 April 2010

vertical stairs?!

Must say I am feeling very positive at the moment. Apart from horrendous sleepyness the past few days following my first Rituximab infusion, literally fallen asleep in my dinner, I am so much better within myself. I have unfortunately got another one to go through next week (they do 2 infusions 2 weeks apart) so not looking forward to that but im sure it will be ok now I know what to expect. So as I was feeling a bit better today I decided to resume my exercise. I go swimming twice a week and also go on my exercise bike to keep the wobbles away! So swimming went fine, although it made me recall this time I went to the pool a few months ago when things were really bad.
Now im sure you will all agree that moment that you step out of the changing rooms onto the side of the pool is embarrassing enough for most of us, what with the freezing cold whilst stood wearing next to nothing and scared of revealing those bits you dont like to the lush lifeguard. Well, im not like most people and I am pretty confident when it comes to my body, however this soon changed when I saw how we were supposed to get into the flippin pool!
Normally I would not have a problem getting in or out but on this particular day my knee was giving me right gip and was pretty much the size of africa as it had swelled up over night. I looked at the "stairs" and nearly died! The stairs were actually a ceramic vertical ladder which I had to climb down to get into the water. I knew straight away that this was never going to happen! My knee hurt so much it just wouldnt bend that way ha! So i looked around for cute lifeguard and co and thought how am i going to get out of this without looking like an idiot. I fluttered my best eyelashes when my mum came bursting up and said "would you mind getting the other stairs for my daughter, shes disabled"! Oh my god.... the shame. She didnt mean it nastily of course she is just a straight to the point lady, god love her. So whilst everyone else got in, I stood and waited, Freezing my lil bum off, on the side whilst pretty much every employee at the leisure centre dragged these portable stairs the length of the pool. Not sure if it was just me, but the whole pool stopped and starred. Whats worse is that the girl who was part of the removal team looked at me in disgust. I thought to myself "Terribly sorry to have ruined your standing around time love, but I am not actually retarded just have a sore knee so if you could hurry up with the stairs I can crack on and bloody swim!"
Safe to say I have never asked for the stairs again and have gagged my mum with a swimming cap on several occassions. Better not inconvenience the staff hey!

Friday, 16 April 2010

hospital food...yum

About a month ago after the decision had been made to stop the anti tnf treatment because it wasnt working, I had the choice of where to go next, along with my docs of course. I was told about this relatively new "miracle" treatment called Rituximab. Only very few people have been prescribed this, in the worst cases I imagine. It sounded bloomin scary thats for sure. It involves an infusion given over a number of hours of a treatment that depletes the B cells in your body along with your immune systems to try and wipe out the disease. It obviously means im more prone to infections (as I was before on anti tnf) and also means if i ever want to have any mini kerrie's i will have to come off the treatment a year before conception, not that im planning on that anytime soon (will come on to this later!). So it was a tough decision to make, I would have to have around 2-4 infusions a year given in hospital and stay over on the first course. Ultimately, my goal is to feel better and get rid of the bloody stiffness, pain and fatigue as much as possible so I can go on living a normal life so anything that I can try, I sure as hell will!
The wheels were put in motion so that I could start the treatment. I was given a date in 4 weeks where I would have to come in and have my first treatment and stay over to be monitored for any reactions. To say I was pretty terrified is an understatement. I didnt sleep for weeks, obviously my pain was increasing with not having adequate treatment and I felt increasingly alone and emotional because I was tired.
I kept focussing on the goal of getting back to "normal" and that seemed to pull me through. You start to reflect on your life and overthink things way too much before a hospital visit i think (well I do anyway). I kept wishing I didnt have to do this, why cant I just be ok (for starters I hate bloody hospital food!) but reminding myself that this is what it is, there is nothing you can do but be positive and hope for the best. Being positive is so damn exhausting at times! But it does help improve my mood.
So here I am in the present, having just returned this afternoon from my first Rituximab sesh. I went into hospital yesterday morning. The usual faffing around occurred, I spoke with a lovely doctor who explained fully what was going to happen and asked if I had any concerns (typically, of course, i had loads but didnt say anything!) and once they took some blood to check I had no infections or nastys going on they were happy to go ahead. A couple of hours later I was comfy in my bed when I was given my pre meds, a steroid infusion and a piriton injection to prevent any reactions and help with the pain. I immediately felt woozy and wanted to sleep but then was strapped up to an obs machine which went off every 15 mins checking my blood pressure and pulse etc. Great, not gunna be sleeping much now! The blood pressure strap squeezed my arm to an inch within its life (ive only got skinny arms anyway so it was pretty much down to the bone!)
A bit frightened, my pulse was high but they said that can be normal so I tried to relax. Then the infusion was started, I was told the amount of fluid that would go into my body would be increased every 30 mins to slowly introduce the medication to my system. I barely felt anything to be honest in the first hour. I tried to relax, read a magazine, chat to the nurses to keep my mind off it. I then started to feel very tired and like I was having (what I call) Granny sweats (this generally means hot flushes and a bit of a to do!). My face was having its own disco, going red and white and red, I didnt feel too peachy but the meds were increasing so i understood why it was happening. All I wanted to do was sleep!
About 5 hours passed and the bag was finally empty. I could be detatched yey! In the mean time one of my best friends had turned up with some goodies (bless) to cheer me up and I was feeling much happier I wasnt alone. Some of my other best friends turned up and we all had a good chat and a laugh as I munched on a creme egg (yum), I always feel better when my friends are around, they make me feel normal!
After a long day and lots of observations done on me, I finally settled off to sleep after a little cry (I think I was too tired and emotional to cope with the situation of being alone!) But I drifted off quite quickly and before I knew it i was being booted out in the morning told to go home and rest ready for my next infusion in 2 weeks time. Today I have literally never been so exhausted, I could barely keep my eyes open writing this but wanted to let you know whats been going on in the land of rheuma girl! I feel a bit sick, my arm is killing but nothing a hot bath and some rest cant cure. Oh and the hospital food wasnt so bad after all...

Wednesday, 14 April 2010

special treatments

After the first conventional methods of treatment appeared to have no effect on my symptoms the docs cranked it up a gear. I was to be put forward for a treatment called anti-tnf, a relatively new treatment that a specialist nurse decides if your eligible. I was interrogated, proded and poked for two months to ensure my condition was bad enough to go on it (apparently it costs the nhs a lot of pennies!) so finally when i was told it was severe enough (didnt know weather to laugh or cry?!) I started taking regular injections every 2 weeks. I felt like a bit of a junkie if im honest having to administer the injections myself but it was almost like a miracle as 2 weeks after i started, i felt an improvement. I thought i could see a light at the end of the tunnel! At last something worked. Now i know some people go for years through trial and error of meds and I suppose thats the one good thing about being younger when diagnosed, the docs want to get on top of it asap so you dont end up looking like golum in later life.
For the first time in ages I could go out with my friends, go shopping, even drive and I felt so positive about the future. I still wasnt 100% dont get me wrong but compared to being bed ridden it was like a new me! I was still tired all the time but I powered through it to try and grasp what little of a social life I had left.
Weeks and a couple of months went by of me gradually building my strength back, still having the odd bad day but I concentrated on the good ones to get me through. I was even thinking of trying to get back into work, maybe part time to begin with and build it up. I had my 3 month assesment to check how my disease activity was (now when I went for the assesment prior to treatment the score was off the charts) and it was working! I was so happy I wanted to scream!
Now, not to put a downer on it, but this is where it started to go horribly wrong. Almost a week after seeing the specialist for my assesment, I felt strange. I started to get those nasty sausage fingers back and pain slowly crept into every joint again. To top it off I had so much fluid appear on my knee it was practically the size of Africa! I had to have steroid injections to try and ease the pain but couldnt do anything about my treatment untill my next assesment, in 3 months time.
Three months of agony and a slippery slope back to where i started, the nurse ran the tests again and the results were worse than the first time before i started the bloody treatment. "I'm afraid its failed", she said. Failed?! I wanted to cry, how could this happen? I was told its not unexpected for this to happen as some people respond to the treatment initially but then it fails to attack the disease. So I had stuck those flippin needles into my legs and tummy for 6 months (gathering a patchwork of bruises along the way which I had to try and explain to people) for absolutely no reason?! What now?!

Thursday, 8 April 2010

working 9 til 5

Believe it or not I love to work, always have done. Ever since I got my first job sweepin floors at a hairdressers when i was 13 I loved the independance and responsibility. I worked damn hard through uni (well reasonably hard!) and was so excited when I got offered a dream job in advertising just as I graduated. Moving to Manchester was mental, everything happened so quickly and I was soon on the old 9 to 5 slog but I loved it. I know people complain about work and yeah if you're in a pants job you probably do hate it and worship weekends. But, to me, work is part of your identity, its part of who you are and what you do as you spend most of your time there.
As my sausage fingers doubled in size and the aches and pains grew worse, it was clear I needed some time off. My meds were clearly not working (even though I was practically rattling with the amount of pills I was popping every day!) so I made the decision to take some time off while I got myself on the right track.
It was horrendous. I was terrified that I had admitted defeat but the longer I struggled to drag my sore bones out of the comfort of my bed every morning the harder it got. My colleagues were so supportive as it must have been extremely annoying watching the girl in the corner fall apart day by day.
I felt like the biggest part of my identity had been taken away from me. What was I actually going to do every day?! Feeling worthless and empty I tried to keep myself busy with housework, learning a language, reading and some charity work but the pain was awful. On the days where I could get out of bed I was so exhausted that I put all my energy into putting on nice clothes and a bit of make up! I started missing out on social events, nights out with my friends and didnt make any plans because I just didnt know when or how it was going to get better.
Feeling left behind is one of the hardest things about this disease. Constantly struggling to keep up with people and put on a brave face when you pretty much want to ball your eyes out all the time is exhausting. My relationships with people were affected as people were frustrated that they couldnt help but the honest truth is that nothing can help, only support from those you love and thats all I asked for. I dont want pity or sympathy, the fact is this is life and bad things happen all the time you just have to accept it and move on. (I may sound very realistic there but I didnt always feel like that!)
So with great regret I had to leave my dream job. I just wasnt able to do the job I was hired to do and needed more time whilst they needed someone asap. I was devastated but knew I couldnt kid myself anymore and I had tried my hardest. All I could think now was what am I going to do with my life and will this ever get better?

Wednesday, 7 April 2010

Im sorry... Did you say no alcohol?!

Whenever something bad happens in life the majority of us tend to get a bit tipsy to try and numb the pain...right? Well as my ordeal following diagnosis unfolded I deteriorated so badly that I was hospitalised within 3 weeks of the doctor telling me I had knackered joints. It happened so fast I didnt even have time to google the bloody disease! All i had were these stupid leaflets telling me my life was over but if I wanted to talk to someone about it I could call this premium rate number and they could try and talk me down off that 110 storey building! So it was all going to be ok then!Ha, fat fingered chance.
To make matters worse I was admitted to a ward full of old women (now I love old people my nan and grandad are 2 of my most favourite people in the world but that didnt mean I wanted to spend 2 weeks with Doris, the 87 year old widow who talked to her knees!) It was as if my life was flashing before my eyes, I was a 22 year old trapped in an 87 year olds body!
This very nice indian chap came round and told me, "we are going to start you on some medication miss dawson is that ok?". I think i actually shouted "Give me the drugs!". Then came the blow... "Now miss dawson, the treatment I am going to prescribe you is a tablet called Methotrexate", (Is that supposed to mean anything to me?!), "And with this you take blah tablets every blah and blah blah but you must not drink alcohol with this medication".
WHAT! Absolutely no alcohol? For a 22 year old? Was he joking? Apparently not. Great now im not only in excrutiating pain but im going to be sober throughout it! Fabulous. After a week in that hell hole they call a hospital I was sent home. To be honest I dont really remember much as I was drugged up to the eyeballs on morphine, steroids and god knows what but I actually felt alot better, just tired. I couldnt wait to get back to work and see my friends. I thought it was over to be honest, I hadnt really listened to a word the doctors had said I just thought this is a blip. Ill get home, go on the net and find out the best way to launch defcom 5 on this nasty.
The internet is a dangerous place. The first search I did came up with listings that included the word "early death", "chronic pain", "incurable". What the hell was going on?! I didnt know it was this serious. I searched and read for hours trying to find out as much as I could and in a way it helped but I was no closer to understanding why this happened.. to me. Surely noone deserves this? Anger completely took over. I cried and cried for days/weeks trying to understand but what I missed was that I needed to concentrate on how to beat this and not why I had it. Why is a question that can never really be answered.

Fat fingers... how it all started

Seems like years ago when I first noticed my fingers slightly resembled sausages overnight. I remember thinking to myself did i get into a fight with a fridge at the weekend after a few too many vinos? Well obviously I was a 22 year old living life to the full working and partying hard so it didnt seem too far fetched I had injured my hand and forgot about it! It took quite a few weeks before I decided to go and visit my doc as I started to feel like all the hard work and partying I had been doing had taken its toll. It didnt cross mine or my doctors mind that it was anything sinister just that I was feeling a bit low and I should take it easy for a while. I was really looking forward to a holiday me and one of my best friends had booked to Egypt. We always had such a laugh together and I thought that would take my mind off things and we could relax (with some cocktails on our all inclusive deal of course!) Boy was I wrong!
When I stepped off the plain into this beautiful, boiling country it was not a sense of relaxation I felt. Far from it infact. I was in complete and utter agony. I felt like I had literally taken a sledge hammer to the feet, knees, hands, elbows and back. (Not a great feeling when you have just arrived in a foreign country as you can imagine!) But for the sake of my friend i popped a few painkillers and sucked it up. Trying my best over the week to overcome the unbearable agony i was in (with not a clue as to why i felt like that) I struggled on and tried to fake a smile but my friend, bless her, could see I was not right.
After the nightmare of being away from home and feeling pretty much like I wanted to ride home on the wing of the plane, I got back to my house and made an appointment to see the old doc again. Within a couple of weeks I had my diagnosis. Rheumatoid Arthritis.... "I'm sorry I thought you said arthritis?" I said to the doc, "Thats right" he confirmed.
Forgive me for being potentially politically incorrect but I thought only old people got arthritis?! People that had long, full lives packed with activity like walking up big hills with their grandkids! Not a 22 year old girl just starting out in life. Confused and shocked I walked away from the doctors trying to decide what impact this diagnosis would have on my life. Little did I know then it was to knock a giant asteroid sized hole into the next few years....