With new treatment comes great support 

Well hello lovelies it’s been a while tonight I’m just gonna share with you my experience so far of a new treatment I am undertaking tomorrow and the reaction it has had from friends and family. 

As some of you guys will know I have rheumatoid arthritis and it’s a bitch of a condition to have (urg I hate the word condition)  for the last 3 plus weeks it has taken hold of my body and well and truly kicked my ass I think I have felt the worse I have felt so far both in body and spirit. I have also had to make a pretty big and scary decision as to how my RA is going to be treated and have to come to the decision that mabthera or rituximab is my best option after alot of researching and talking things through with family, friends and colleagues as this treatment means me having to have time off work. 

Now a Lil info about this treatment I will be admitted to a haematology ward tomorrow and given 3 infusions (drips) one being a steriod, one an antihistamine and then the actual treatment mabthera in total it should take around 6-8 hours, this drugs primary use in a larger dose than I am having is for the treatment of some cancers I will be having 2 of these treatments first one tomorrow then the next in 2 weeks. It is designed to bond with my blood and prevent the bad cells from attacking my body so in essence stopping the arthritis in its tracks. Now with the drug comes all sorts of weird and down right scary side affects none of which I feel like telling you right now but I will go into details of them at a later date but right now I’m pretty scared in all honesty as this is a relatively new treatment here in the UK and I’m not 100% sure what tomorrow holds for me as yet. But I guess what I really wanted to say in this post is thankyou, thankyou to everyone who took the time over the last few nightmare weeks to see if I’m ok and help me get my head round this new treatment option. The support and help I have had from friends, family and Co workers is overwhelming I am so lucky that I am surrounded by amazing, kind and loving individuals that have been willing to take time out of there days to talk to me, help me and reassure me. And hopefully tomorrow is gonna be the start of a new dare I say pain free chapter of my life so with a touch of trepidation and lots of laughs tomorrow I will have my first course of treatment. 

If there is anyone reading this that is having the same treatment let me give you one piece of advise. Do your research and talk to loved ones, friends and even Co workers about how you are feeling!  I fully freaked out about this. And if it wasn’t for the patients of the amazing people I have managed to surround myself with I don’t know if I would of got to this point. 

I will keep all you guys posted on how it goes over the next few weeks 

Take care of each other and don’t be dicks 😉 xxx 

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With new treatment comes great support 

Those valentines posts are coming…….. 

Hay people’s ranty rant time 😋 so those of you that know me will know that I’m not one for massive shows of affection ( probably because I have never been a part of any or felt the need to do any) that and the fact that I can count on half a hand how many times I have received or sent anything on valentines day let alone been in a relationship with someone on valentines. The fact the best valentines date I have ever had is a damp domino’s in a park in Manchester followed by being shown the world of sparticus thus awakening my love of all things roman!  😉 ( I honestly recommend every woman watch it ha ha ha)  this should tell you alot about me and more than just I’m bit of a perv he he he. Anyway I swear I had a point, oh Yeh so how as a singleton do u prepare yourself for the onslaught of lovie dovie pictures, posts and snaps that will appear? Followed by that tiny deeply hidden twinge from the depths of your black heart 💔 (yes I’m being dramatic 😜) well a friend of mine summed it up pretty well for me by sending me a meme that said I’m not single, I’m dating myself, I take myself for meals, treat myself to gifts and love myself and you know what I do!  just because no one eles has seen that I’m actually pretty cool doesn’t mean they won’t Yeh part of me wishes they would hurry the hell up but In all honesty I’m happy as I am, doing what I do and getting on with life. I used to think that in order to be happy you had to be part of a couple when really you should be perfectly happy single and together you compliment each other and make each other better. Its taken me the best part of 15 years to realise that and be comfortable with who I am. Anyway I digress my plan for V day is a long bath,one of my favourite films and a bowl of my favourite popcorn, phone off, chill out and enjoy my own company silently hating the instagram couples, posts of engagement rings, flammable teddy bears and over priced flowers while I watch my favourite actor kicking ass in some stupidly violent yet funny action movie 👍 😂 anyway I see u single awareness day and I salute u with my brother finger 🖕. Whether you are also single or in a loving relationship I hope have a great day big love and yes u know it’s coming………  Don’t be a dick 💋 

Those valentines posts are coming…….. 

Me vs RA 

Hay lovelies this is gonna be a general rant about my life/ treatment and general affects of RA on life. 

Now the last few months have been horrendous as far as my health and wellbeing has been concerned I have had a flare up from hell that has affected ever single aspect of my life. 

I have been unable to sleep due to pain, unable to move sometimes due to my joints ceasing up and had a general shitty existence for around 6 weeks but one thing I didn’t expect was the change in the way people looked at me.

Now I’m sure anyone that had a long term condition will know the looks you get if u are honest and tell someone actually I’m having a tough time, it’s a mix of pitty and disbelief and it kind of makes me die inside. 

Then there are the people that just completely egnore you and I mean completely, not responding to messages or engaging in any form of conversation, now I try so hard to just say Yeh I’m good thanks but sometimes I have to admit actually I’m not that great (something I am very bad at)  I have pulled up a few people about this an asked them if I had done anything wrong the answer I got was no they just couldn’t cope with the fact I was suffering!!!  Im sorry but seriously????  I’m the one in pain and unable to control my own body!!!  I am the last person that will ever let someone do stuff for me or expect to be cared for in any way shape or form and being left to feel like I have done something wrong only adds to my already stretched mental health!  All I expect from anyone is that they treat me with a Lil respect and don’t take the piss but not talking to me is only gonna make me less likely to talk to you!  I have had so many bad experiences with people regarding my RA that I don’t tend to tell people untill I have too. I feel like as soon as i say that I have RA I stop being Laura and start being a sick person, they stop seeing me and start seeing my condition and using it against me and that winds me up so much!  I am me first and foremost yes sometimes I can’t do some things but it doesn’t mean I can never do it again! It just means this week or month it’s not a great idea. 

I have probably been at the lowest point I have been to date with my RA and throw in the fact that I have to choose between 2 very scary sounding treatment options and had a complete lack of sleep I felt like my whole world was imploding at times, I mean I have had most life choices made more difficult for me from having kids to the simple things like choosing a holiday destination and even having to ask for time off work for treatment and wondering how that’s going to affect things it’s been a tough few weeks really and a simple hay how’s things or even for someone to just rant to me about whatever they wanted would have been a welcome distraction from the way stuff was and the information I was trying to digest. 

I know this is all gonna sound really self centred but that’s not what I am like as a person I honestly would do anything for anyone, i am the friend u call as 3am to pick you up when yr drunk, I’m the one that will listen to your problems and not pass judgment. Now i just feel let down by a few people. 

Don’t get me wrong my family and work are amazing and I honestly don’t know what I would do without them. Sometimes you just need someone that is only there for you not because they have to be because they are related to you or legally obliged to provide assistance. I was just left feeling a Lil bit isolated. 

As for searching for Mr right that’s gone out the window, apart from having a self imposed no dates around valentines, i really don’t see the point in putting effort into someone for them turn around and tell me they can’t and don’t want to be with me because of my condition. And yes I have had that said to me. If they said they didn’t want to be with me because I’m an asshole or a crazy bitch fine but to punish me because of something I didn’t choose and I can bairly control well that sucks so badly. That puts you off getting close to people and sharing who you are with people. Urgh basically life with RA can really suck sometimes, you have to develop a thick skin and always be open to trying new meds!  FYI I now have some new nerve suppressant medication that helps to ease the pain and let’s me sleep!!  🙂 a sleepy Laura is a grumpy Laura lol anyway I’m gonna take my ranty ass to bed now. Night night guys and remember don’t be a dick 👍

Big love xx 

Me vs RA 

Being in RA limbo 

Hay lovelies some of you guys will already know but for those that don’t I have been dealing with rheumatoid arthritis for the last fews years now and 6 months ago my care team decided that my drug routine wasn’t affective enough so decided to try me on a biological drug called benipali, now the last 6 months have been without a doubt the worst 6 months I have ever had as far as my health is concerned well I have had a 4 week yes 4 weeks flair up from hell now i know that there are trigger factors to my RA flair up such as the damp British weather and stress but I can honestly say that benipali was not working for me.

 Now this flair up has actually left me scared and concerned for my future health, there have been days when my knees and feet have hurt so much that I can barely stand. My half an hour morning free up routine was taking me at least an hour. I have seased up throughout the day resulting in me falling over myself or unable to move my feet and the tiredness my God the tiredness has been relentless. I have been so over emotional due to the pain and discomfort and lack of sleep due to pain. I have figured out tramadol doesn’t work it just makes me feel blah. But now after seeing my care team I am in untreated limbo, i told the nurse what had been happening and how I have been feeling to be told that I should really give the benipali more time but when I asked if I should be seeing an improvement they tell me I should be but I’m not, I don’t want to take this drug anymore. They do there count of my joints and as a side note every nurse has always counted different joints in different places this came out the same as before I started although this isn’t an indication of the drugs not working either!! I did get increasingly frustrated with my nurse as she didn’t seem interested in what I had been going through, my concerns or how I feel about my treatment I pointed out that now after 3 years of no pain I have pain in my shoulder, limited movement in my should and swelling and tenderness in my elbow but she pointed out that doesn’t matter and doesn’t count towards my score!  Well it bloody well matters to me. It scares the crap out of me that my condition is not under control anymore and is active to the point of effecting other joints!!!  This time tho she did check my feet for the first time in years but because they are bending a Lil but not really enough for concern they still don’t count!!!  What the actually F is this bull shit, my old mixed bag of medication ok didn’t stop the flair ups but they only lasted days not weeks and I could sleep and hardly ever took pain meds now i am in constant pain, regular swelling and unable to sleep due to the pain. Her answer for me to go to my Dr and get some nerve blockers basically low dose antidepressants that help to Numb the nerve endings and relax muscles so that you don’t feel the pain great 👍 that’s booked in for tomorrow and her opinion on my treatment well I got a steriod injection which don’t get me wrong is ace they do work but it’s basically a band aid it covers the problem up and not treat it so what do we do going forward as I want to go back on my old meds but apparently that’s not an option!!!  Erm why???  Because there are other biologicals I can try well there was untill they did some more blood tests and both the tests have come back high so as I see it that rules out those 2 then?  But I won’t find out for 2-4 weeks as now they do virtual clinics that the patient isn’t a part of but they discuss me and my condition and what the best way of treating me is well that’s just dandy I don’t want and can’t go through another 6 months of not being able to do simple tasks, 6 months of not wearing anything with a bloody button because my 34 yr old fingers are fooked or struggling to get out of my car whenever I go out ( this is a rare occurrence as I’m so bloody tired all the dam time) or not being able to sleep because of the pain and discomfort. Life with RA is hard enough without your care team not listening to you and making you feel like your lying or not trying hard enough and that’s just the impact it’s had on my body. Let me tell you my whole life has taken a hit by this and I don’t have much of a life to start with!  Work is hard and I mean crying on my lunch break because my head wants to be at work but my body has other ideas hard and mix that with the zombie state caused by lack of sleep and that spells employee of the month NOT!  I have felt like a failure for months. My personal life or lack of is even more dead in the water as I have zero energy to go do stuff with the few friends that still speak to me and even less motivation to be outside where I am unsure of my feet and even more unsure of how long I can walk at any one time. Small talk is hard as I feel I have to either pretend I’m fine or tell the truth in a hay I’m so funny poking fun at myself way when really most of the time I want to cry. I don’t feel strong at the moment and those of you that know me will know how scared that makes me feel. I try to say I got this but I ain’t got this at the min and I hate that 🙁 I feel like the people that can help arnt taking me seriously. Someone asked me if I was dating again the other day all I could do was laugh!  Why would someone want to get involved with me?  I barely function at the min, i can’t take part in fun stuff like bowling or walking as I’d be done in for a week!  I have no energy and sex drive well even Tom hardy is struggling to light that fire at the min ( I love me some Tom) why would I even bother to try and find someone right now?  I’m not happy with the way things are, I’m not happy with me at the min I wouldn’t put someone eles through this, through watching this and I definitely couldn’t handle another person telling to either just get on with it as if I’m lazy or telling me it’s too much for them to cope with because you my dear are not the one coping with this bastard of a condition and sometimes it’s hard. I know I will get through this and in a few months I will be blogging about how everything is awesome. Some days it’s just hard to see a way through but I know with the love and support of my family and my small but perfect group of crazy friends I will get there again it’s just gonna take time keep your fingers crossed for me people’s someone will listen to me eventually right??  xx 

Being in RA limbo 

Relationship stuff and things and meeting new people and being single at Christmas 

Hello lovelies, today I’m goin on a general rant, so we all have ex’s but does anyone eles have those moments of dam you never actually cared about me at all?  This has happened a few times over the last few months with different people, like not remembering something so simple or hearing them talk about a partner or another ex. Now i am friends with a couple of my ex’s and it’s purely because I hold no malice against them and wish them well in there lives and dont have any feelings for them apart from friendship. I do how ever still have a small bit perfectly formed girly side that does get slightly hurt when you hear an ex tell his girlfriend he loves her when he had never said that to you throughout your whole relationship or when someone can’t remember how you actually met or tells you how they have met and lost there prefect woman knowing full well they don’t mean you. As humans we can’t help having emotions and those emotions suck ass!  I mean we are literally programmed to react certain ways to certain things regardless of whether we feel that way or not. I pride myself on the fact that I am not like ‘most’ woman I will not force someone to care about me, throw a fit if I don’t get my own way or treat a man like a meal ticket or a slave like some people do and I will never play games but I do know how those games are played and can spot them a mile away. I don’t do bullshit and I can be stubborn as hell but I will give any of my friends the clothes off my back.if they needed them. Anyway I digress from the ranty rant in hand ha ha my point is when these things happen it hurts even if you know why you guys didn’t/wouldn’t work and have no romantic feelings towards someone at all it still sucks to have the reasons you didn’t work out confirmed my the actions of someone you once cared about. As for meeting new people I have been on enough dates to realise you never know what you are gonna get honestly there is no telling what is gonna turn up but there are a few topics that should really be avoided if possible I mean everyone has ex’s and they are gonna come up at some point but to tell someone you are basically on the same first date as you had with your perfect woman or the one that got away that doesn’t but me in the this gonna be a good date mind set, in all honesty I instantly feel myself awkwardly moonwalking backwards into the cozy Little friendzone that I have ended up in a few times in the last year or so, so that maybe something you should avoid mentioning even if you feel you need to be honest, to be honest would be to not go on the date in the first place as you are still very much in love with your ex. Secondly if your honest with me that’s great but don’t get shitty when I’m honest back and you don’t particularly like my response that’s my observation or opinion I respect yours so how come you can’t respect mine?  and finally never pretend you want a relationship when actually you just wanna get laid it ain’t gonna happen to quote pump up the volume I can smell a lie like a fart in a car so don’t bother you will be wasting both of our times. At the moment I’m taking a festive break from dating, dating anytime of the year is hard but around Christmas it’s ridiculous people are just after a holiday season fling so they don’t feel lonely and you know what Christmas on your own does suck a Lil bit but its way better to put your energy into friends and family than into a relationship that come new year won’t be there anymore believe me I know I have been on my own at Christmas more than I have been in relationships. Anyway merry Christmas you lovely people and I’m sure I will be posting in the new year remember don’t be a dick and stay safe, big love laura xx 

Relationship stuff and things and meeting new people and being single at Christmas 

The dating struggle 

Hi lovelies, i do hope you are all doing well? sooo today I am gonna go through some stuff that is kind of bugging me about the whole dating situation at the min along with some general laura rantiness ha ha. 

Sooo as I am recuperating after a operation, I’m bored so I start having a bit of a mooch around a couple of dating site and as I’m sat there having a nose I find myself doin alot of swiping left!!  ALOT every profile is the same!  some fake tanned guy with a quiff, beard, tattoos, six pack, aviators, pink shorts, lumberjack shirt and a gym photo it’s like the new hipster starter pack! all spouting the same information as the next, not into “mainstream” shows, live life for the now bullshit when u know he is sat watching game of thrones or walking dead like the rest of us!

please now i know where I rank on the dating scale I have been told enough times I’m around a 5 good for a laugh, cinema or even a couple of meals but will never meet friends/family or be taken seriously as “girlfriend material” yes people girls get friendzoned too!!! and these type of profiles I try to avoid even tho I am a self confessed lover of a good beard 😉. but it seems this is the only type of Man that is on dating sites so what Is a 34 yr old opinionated tomboy who still lives with her parents supposed to do?  and what the hell happened to men, just normal meat eating men? seriously I wouldn’t be caught dead contouring my fellas abs shit I don’t even wear makeup! ha ha.i am struggling to get my head round this newish breed of fella that seems to be higher maintenance than any of the woman I know. 

Dating is so hard and so boring. I actually loose interest completely sometimes as it’s all the same questions leading up to the same kind of date that usually ends in some awkward hug and then the wondering if they had a good time or liked you and do u even like them!!  urg it’s so tiring. I often wonder if I’m expecting too much or if my standards are too hight (if u have met any of my exs you know this is not the case!) seriously all I would like is someone to hang out with that I have some stuff in common with so we can do stuff and preferably like to see naked every now an again that isn’t playing some game or gonna use me or treat me like a distraction untill something better comes along grrrrr I actually hate and love being single. I hate it because every now then I would like to have someone I can go do stuff with or chat to that I’m not related too and love it because I don’t have to listen to someone eles bullshit and pretend to be interested in shit I’m not interested in, in order to not piss off that person I kind of care about ha ha ha I know I know I’m emotional backwards. 

I mean I don’t even think I ask that much from my relationships just be honest, faithful and not a dick. I can’t be that bad seen as 3 ex’s have asked me out in the last 2 weeks although I’d bet that they have just become single again, where bored and figured I would be a good waste of time for a bit seen as that is a basis of most of my past relationships urgh. 

Anyway so if it’s not a hipster lumberjack that you come across its someone ridiculously creepy that basically want to find there next victim, or they are married and or separated and have some kind of “arrangement” with there wife (this is actually a thing I had a date with a chap I didn’t know was married and he confessed on our date that it was one of his “free” nights when he was allowed to do what he wanted) this tho you usually don’t find out until they slip up or you get a phone call from the wife ha ha ha.

On a side note my beard obsession is a bit of an issue as any man with a beard and or stubble I think is around 30% hotter than there none beardy self.

So I guess the long and short of it is I am stuck between a dry and a single place lol because if I don’t seek I won’t find but I don’t think I will find if I seek. 

I just don’t think what I am seeking I will happen to swipe across 🙁. 

Anyway hope u enjoyed my little ranty rant take care lovelies xLx 

The dating struggle 

Living with Rheumatoid Arthritis

Well hello again peoples as some of you awesome people will already know i have Rheumatoid Arthritis well over the last few weeks/months i have had some changes to my medications and this last week i have felt stuck between and rock and a painful place as i have experienced the worst flare up i have had in the whole time i have had this asshole of a condition.

To bio or not to bio that has been the question after a few months of assessments a obscene amount of hospital visits, phone calls and what feels like a whole body worth of blood samples my specialists have decided the only way to treat my gone from inactive to extremely aggressive arthritis is with a biological drug trade named benepali (yes i know it sounds like something you would order pissed up on a Saturday night) and honestly the thought of it scared the living crap out of me now those of you that know me, hopefully see that i laugh and take the piss out of myself quite a bit. this is sometimes the only way i can cope with the things that happen.

So anyway i digress i have been scanned, x rayed and tested for everything over the last few months and i mean everything cancer,aids,hepatitis,TB and everything in between and i’m pleased to say i have nothing apart from my immune system trying to kick my ass. In order to take benepali i had to fit into a certain category and apparently i do so all the paperwork got signed up and the request for the drugs completed now i’m no stranger to injections i inject myself once a week with methotrexate i have done for a while so this didn’t really bother me what bothered me more was the fact that when i received the information about this drug apparently made up of synthetic DNA if u will but the actual composition is not something you can find out or at least not in the UK. It is made by a company called Biogen  now i have seen enough apocalyptic zombie movies to know how if this drug doesn’t work how this shits gonna end (i have my fingers crossed for super powers) but my family are fully prepared if they need to take that head shot !.

so to take this medication i have to come off everything else i take apart from the methotrexate and that would be fine if i wasn’t freaking out about this medication, unable to take my methotrexate due to a sinus infection (more on that later) and wasn’t already having a flare up grrrr so the day comes to take the first injection (last Tuesday) i have to be supervised by a community nurse in case of any reactions so she tells me all the scary stuff and how to store and travel with my meds and how to take it i do it and all is fine shes happy, i’m slightly happier. she asks me to start a diary for the day i take the injection and a few days after each week to log any side affects etc all of which should go in time (ace) so i’m a good girl and do. i feel a little sick that evening and slightly dizzy but apparently all is normal so fingers crossed this stuff works. now with all RA treatments it takes 12 weeks yep 12 weeks to get the full affect of any meds so this week i have had a bitch and a flare up a unable to sit/stand/hold anything/ sleep/concentrate full blown flair up with only my trusty codeine to get me through i have an emotional conversation with my specialist who informs me the only thing i can do is go and beg my GP for stronger pain meds and possible sleeping tablets (yay!! not really that sucks) so an appointment for the GP can take up to 3 weeks to get so i’m having to ride this bitch out until i can to see them. and quite frankly i have been in so much pain, so tired and a grumpy cowbag i have i know i have and i also know that thankfully i have an incredible family and fantastic work colleagues that under stand what i’m going through or at least try to.

Now i’m only 2 weeks in and if i’m not careful things could get way worse before they get better as i really cant begin to describe the hopeless, painful thing i am going through and the fight i am currently having with my body to do everyday simple tasks so yeh its getting to me and i am struggling on so many levels this flare up has hit home how bad this condition is it sucks, it more than sucks it takes away all your control over your life so quickly just whenever it feels like it and it makes you angry. not at people but at yourself at your body and at your mind for thinking you should be able to do stuff when your body just isn’t up to it. don’t get me wrong i have got better at listening to my body and doing what it wants to do but sometimes its difficult. sometimes you just have to fake a smile and pretend your fine its easier than trying to explain and being made to feel like you are moaning or winging about something no one can see.

sorry that got a lil deep there doh ! anyway so 10 weeks from now i hope to be a kick ass super human or at the very least capable of cutting a loaf of bread !! fingers crossed for me guys …

now onto my face well apparently i have a deviated septum and polyps in the left rear sinus of my nose (as close to my eye socket as you can get) so the lovely nhs have decided that actually my once mountain of meds is not the problem my face is so they are gonna go in there straighten it all out and remove what they can now this is a pretty big yet common operation made ever so slightly more complicated by my condition or should i say my meds grrrr in order to have this op i have to come off my meds for sometime before and a while after as both of my meds suppress my immune system i am at high risk of infections during and after operations if i don’t come off them so bearing in mind this op could take place in the next 8 weeks (not long enough for meds to start working) and i would not be able to take any meds for around 4 weeks, 2 before and 2 after this whole situation has sent me into a little bit of a tail spin to say the least and as all u fellow RA fighters know stress is a contributing factor to flare ups so yeh fuck you arthritis fuck u is the only way i can say it at the moment. i know some of you reading this will probably be thinking that i need to get a grip and you are probably right and i am trying so hard to see the positive in this whole situation but at the moment its difficult to say the least but the one thing i know for sure is that i will get through this, i will continue to be myself and i will not let this situation affect the way i live or enjoy my life i may be a little slower at doing stuff or have to rearrange things but i will dam well get there..

thank you for reading sorry to  rant but well i needed too get it off my chest

big love peoples xx

 

Living with Rheumatoid Arthritis