Thursday, 21 April 2016

Chronic Illness And OUCH!!

Ok, had a lot to think about today .... I've been thinking about chronic illness, it triggered off today when I went to see my mum and my youngest son asked me why I was walking like I'd been in a car crash!! :) .... Thing is, I'm always in pain to a degree, but for some reason (I'm putting it down to being back at work after quite a while off) I'm in even more pain than usual, in fact this is the worse I can remember in a while .... I'm still going to work, but in the morning I have a long wait before any hope of the painkillers doing their stuff so I can actually get out of bed ... If I sit for too long I seize up and when I try and move it hurts to the point I want to just scream and cry a bit (no drama intended) .... But if I say anything like oh I think it's the sarcoidosis or I think it might be the fibromyalgia or I think it might be that I was left untreated for too long with pernicious anaemia, I'd get caned for it verbally for sure ... But why? ... There seems to me to be a stigma attached to chronic illness and/or illness no one has ever heard of .... We've all heard of cancer, right? ... We all appreciate the gravity of how devastating it can be .... But just because the illnesses I have aren't as well known, it doesn't mean we should immediately assume that because we haven't heard of them, that they're any less serious in ways .... Since I've been a member of sarcoidosis support groups, I've lost count how many of us have died ... Sarcoidosis is dangerous ... It's just no one appreciates that as first off, they've never heard of it, second of all, it's not cancer so it's ok .... Right? Third, some documentation out there in terms of sarcoidosis is incorrect, most cases do not just clear up without medication after some years and careful monitoring by your doctor and/or specialist... I'm not trying to detract from the seriousness of cancer, no way ... Nor am I suggesting it's better to have cancer, no absolutely not .... But what I am saying is when people hear the dreaded C word, they fully understand the severity and seriousness of the disease, mention sarcoidosis, for example and it's a totally different response and approach .... After all if it's pretty much unheard of, it can't be that bad ..... Can it? .... Actually yes it can, people also believe that when you have fibromyalgia, it's all in your head ... Again, that is incorrect .... But there goes that stigma ... That "it can't be that bad if it's not cancer" attitude we are faced with from many other people ... Let me tell you how bad it can't be ... There's no cure for sarcoidosis, there's no treatment guaranteed to bring you into remission ... Remission doesn't only apply to cancer patients, it applies to someone like me too .... Sarcoidosis is very cancer like in it's behaviour, it will thrive upon and destroy organs and tissue, to the point these organs and tissues are damaged and will not function properly, the results of which can be fatal .... Plus the pain ... Pain is a prevalent symptom in sarcoidosis, it is also the main symptom in fibromyalgia ... So when I am walking like I've been in a car crash, try and understand that I, along with many others in the same boat as myself, do truly feel like I have been in a punch up in a bush all night with John Cena ... It's excruciatingly painful at times ... We don't mean to complain all the time, I certainly don't mean to ... Nothing would make me happier than to wake up just one morning totally pain free, leap out of bed and get ready for my day feeling good .... But many like myself, if we are fortunate enough to get any sleep at all, will feel like complete shit the next morning, won't be able to leap anywhere and if we do leap anywhere it's 6ft off the floor in agony because we did try and move without taking pain relief an hour before .... I think we really do need to work hard to try and alter society's perceptions of the chronically sick .... They think we are moaners, complainers, skivers etc ....... No, we aren't ... No one in their right mind wants to be sick and in pain all the time ... I would love nothing more than to be a fraction of the person I once was before 2005 .... 2005 was the year I started on the slippery slope of chronic illness .... Do you have any idea how much I long to be who I once was before this? ... How much I look at some other people and just wish I could be healthier so I could keep up and do so much more than I am capable of now? ... How blessed I also feel to still be here? ... As I said, we aren't all moaners and complainers ... We do appreciate what we have, despite it being so potentially debilitating .... We are still grateful, still blessed to be alive and still trying to keep up as best we can, do what we can to the best of our ability .... So I'll finish off by saying, yes it's not cancer, but no it's not any less serious at times .... Just because you've not heard of something, it doesn't mean it's not there, it doesn't mean it's not serious .... It just means it's less heard of than something more common ... On that note, I'm taking my highly pained self to bed ... Please try and understand someone like me, not all of us want to be sick ... Not anyone I know anyway, certainly not me ... Thank you for reading ... Much appreciated ... Goodnight and sweet dreams xoxoxox

Wednesday, 20 April 2016

My Latest Tag!

Yep, I'm up way too late as I have to be up early in the morning for work, but I just wanted to quickly blog and show off my latest graphic I finished tonight ... I'm off to bed now or I'm going to be completely done in tomorrow morning, goodnight and sweet dreams ... I hope you're all ok, thank you for calling by.

Hugs and love

Sunday, 17 April 2016

Heart Issues

Another quick post as I am heading off to bed soon ... I've talked about this briefly in the past but I have heart problems which I only found out about last summer when I had a T.I.A .... These issues are ongoing, with possible referral to a haematologist as I have C and S protein deficiency ... More often than not my blood test results show discrepancies in one way or another and I now have frequent chest pain, I try and ignore them but they're there ... One reason why I have become more introverted lately too, I don't want or need the stress .... I don't know what the outcome of these tests will be but I can only hope for a positive one ... In the meantime I'm trying to just look after myself a little better, without hopefully, neglecting those I love in the process. I need peace, quiet, stability and calm.  Now I'm definitely off to bed LOL 

Goodnight again x

Still Awake So Thought I'd Blog :)

Been thinking a lot today ... I managed to get quite a bit done today in the house, which I'm pleased about but one thing guaranteed to pull me down is the past ... No matter if it's mine or just in general .... I have a particularly bad past, I'm sure most of us do in one way or another if we're being totally honest ... No life road is smooth, things happen that change us, sometimes even define us to a degree, we get hurt, very badly to the point we can't even think of trusting another soul ever again .... That is what human beings do best .... Hurt each other .... It's a sad fact that you simply cannot trust easily these days ... We're for the most part, self protective and understandably so after the absolutely unforgivable things some human beings do to one another.  However, the past is the past .... At some point we all have to learn to let go, for our own sake and for the sake of allowing something good to come along without fear it'll all turn to shit, or the past is still there haunting you.  It's not fair on you or anyone new in your life .... And yes, it is really difficult .... But it's a necessity to allow healing, to allow self worth to return, to allow you time to reflect and understand and process what's happened to you and most of all to give you the strength to slam that fucking door shut and be done with it all ... I've always been taught from a very early age that you simply cannot live in the past ... Why would you even want to if it is that awful? ... I certainly don't want to live in mine .... The bad people are gone, they're only there if I choose to let them in and decide to view what they are doing, why would I want to do that? ... I simply don't .... They don't deserve my time and attention .... I'm only giving what I hope is sound and sensible advice ... I'm just saying what I would do, it doesn't mean that is what you should do if you're struggling to come to terms with a lot of pain someone has inflicted upon you ... I do understand these things take a very long time to work through, depending on the individual and the severity and gravity of what's happened .... But please know, at some point, now or in your future, you have to just let it go .... How can you possibly move on with it there on your shoulder all the time? ... Answer is, you can't.  Please don't think I'm speaking from ignorance either .... I've had some outrageously shitty things done to me, in every way I can imagine and I've wasted far too much of my precious and valuable time trying to come to terms with it all, yes it is time wasted, time dwelling and looking back when I could have been enjoying time with those who do love me and want me in their life.  These words may seem harsh to someone who is still in the stages of processing what's happened to them, it is very traumatic as well, I appreciate that .... After all said and done, I do, as I've already said, understand it does take time .... You have to get there for yourself, rebuilding and picking up the pieces of your life takes a very long time, you may find you're never quite the same again ... But you have to get that strength back, find yourself again and start to live .... Why? ... Because you deserve happiness, because no one has the right to steal your self worth, your pride and who you are and because we are a very long time dead .... Life is a blessing, but very short, some shorter than others .... Make every moment count, make every heartbeat worth it ... Because tomorrow will get here all too quickly, suddenly you're older, don't get too old and look back to realize you didn't even live because you got hurt .... Don't give that to the vile humans that hurt you, it's not them you're hurting ... It's yourself ... I guess I believe in Karma .... I don't even think on those who hurt me, I believe that at some point they will have to face up to what they have done, pay their dues ... Whatever ..... It's their problem .... Not mine.   Yes the past pulls me down, but only if I let it and today I let it .... Tomorrow I won't be so lenient to my demons .... Happiness can only truly be found if you are able to let go of what has hurt you and made you sad .... Goodnight x

Wednesday, 13 April 2016

New Boiler!

What a day! ... I was up bright and early before 6 this morning getting ready before the boiler guy arrived to fit a new one for me ... My old boiler was very old and when I say very old, I mean it was installed when the house was built in 1975!! ... The old bugger was still going strong, despite various clunking noises and a distinct lack of heat LOL ... I'm very pleased so far with the new one, it's running like a charm, let's hope it stays that way for many years to come ... It was a bit entertaining though, nothing ever goes according to plan ... The Gas company phoned to say they'd be done and gone by 2 this afternoon and they were still here at gone 8 this evening :) ... So .... The electrician explained that my thermostat isn't working, yet the timer is ..... My heating went off earlier and I sat here thinking, oh it'll come back on in an hour as that's how long the timer is usually off for, so I sat here........... and sat here.............and sat here, no heating .... I got up, fiddled with the timer, nope ... Nothing ... No heating .... So I'm thinking fuck this ..... I go and play with the thermostat and it clicks and heating comes on ... Good grief, my pink socks!!! I almost thought about phoning the engineer tomorrow and telling him I've got no heating but I sussed the silly sparky  got his advice all dick about elbows .... Silly bugger LOL .... Upshot is, so far I am very pleased .... Let's hope we have a much warmer house in the winter now, the hot water is already proving much better, so here's to my new boiler and long may she last and keep us warm! :)

Hugs and love

Tuesday, 12 April 2016

Sarcoid Update! Plus New Graphics I Made

It's been a few days since I updated and while the house is quiet I thought I'd have a cup of tea and write a new blog.  It's been a stressful time out from work, I was hoping for a less stressful time but overall it has been enjoyable, I'm grateful for the time away from work, I'm enjoying my time with my nearest and dearest and my beautiful dog, Eddie ... So what have I been up to? ... Well, yesterday I needed to go shopping, so I went to the supermarket, came home and walked Eddie, who found the largest pile of shat and threw himself in it and went rolly roll for a few moments!! He was plastered and when I say plastered, I mean he spent the rest of his walk with splats of shit on him from his face to his tail ... First thing we did when we came home was bath him, which is always fun anyway :) ... My mood fluctuates very actively at the moment too, one minute I'm light mooded, happy and everything is fine, then next I'm feeling like the world is about to end LOL ... Very strange so maybe I should blame menopause, why the fuck not?! :) ... In terms of the sarcoidosis, I still feel so much pain within, a huge sadness I'm carrying around right now, partly because I sense it from my online friends too in terms of the loss of Nancy and 3 others, including a little girl ... It's so messed up and wrong ... Then I see wonderful souls fighting so hard to get the awareness out there, people like my friend and sister Alesia, I see Frank working so hard for us, my friend Lee-Ann who is such an inspiration... I'm so proud of everyone with sarcoidosis ... Why? ... For many reasons, we face not only a battle with this disease, we also face an invisible battle, a battle that hurts us to the core every single day because no one understands, they think and they assume that because we look ok on the outside, we are fine on the inside ... It's simply not the case and that is huge for someone like me ... Now I know we can't change people and the way they are, but finding a way to alter their thinking, their level of understanding, I hope that can one day be achieved without the death of those with sarcoidosis ... Death is the ultimate price we pay for this illness, we have no cure, no understanding, just nothing out there other than each other for support.  I think that is also a factor as to why we all feel it so bad when we lose someone.  It's so lonely and so painful.

Ok ... Trying to move along, I have made some more graphics, this one is to hopefully draw attention to the blog, it's hosted on my Glitter Graphics account but isn't actually in my uploads ... I've hosted it elsewhere.... Here it is! :) 

I've also been getting into the spring swing, if that's even a term?! :) ... Sounds a bit naughty actually too LOL ... I'm loving the beautiful psp tubes and scrap kits right now ... They're so vibrant and full of life ... I was definitely born to be a spring person, I dislike winter with a passion, this weather and all the vibrancy around us right now is amazing ... Such uplifting colours and so lovely to walk Eddie and hearing the birds singing, watching the rabbits playing and smelling the fresh spring air, it's such an incredible feeling seeing nature coming back to life again ... I've so missed this time of year .... Plus now having Tony too ... I feel very blessed even though my mood does dip low and I feel overwhelmed with sadness also ... I know I have everything to live for, I hold on to those thoughts in the darker moments ... They pull me back to the light..... So...... Here's my latest spring graphic :) 

Have a great day! Love and hugs,

Sunday, 10 April 2016

A Quick Goodnight

So, I'm sat here feeling completely and utterly drained, of every ounce of mental, physical and emotional energy .... It's like something pulled the plug and left me dry .... My throat and upper respiratory infection isn't cleared and even while taking the antibiotics it feels like it's coming back ... It's probably just me being exhausted ... I did get so much done this past week, I'm glad but I'm now paying for it.  I'm also very shocked and saddened by several deaths these past 2 days, all down to sarcoidosis .... They've sent shock waves through the sarcoidosis community on Facebook, a lot of hitting home as to the severity of this disease, the battles we face because we look great, but as a close friend and sister of mine said, we are dying on the inside.  It's the truth.  Our time is limited.  We have to make the most of every second we have left.  These deaths have made me do a lot of thinking recently too.  I so want people I love to understand that despite the fact I look ok on the outside, it's not the case within and that my time is also limited.  No matter how I try, it's like I'm just not being heard properly.

I'm only going to say this once, but if the worse were to happen, I don't want those left behind in shock, like they weren't prepared .... They need to be .... It shouldn't come as a shock when that times comes, it should be understood and they need to be well prepared.  Now I'm not suggesting for one second it'll happen overnight ... Of course it won't, but I won't be like my mum and live to see over 80 ... I'll be lucky to enjoy retirement .... If I get that far, so enough said.  Just don't say you weren't warned, ok?

I'm sorry this is a doom and gloom kind of entry, it's not meant to be all that way ... It's meant to be a tough and practical approach to my circumstances, it's a necessity to be prepared.

On that note, I am going to say goodnight, I'm sickened by some of the things I've dealt with this week in terms of human behaviour, both on and offline.   

I'll leave you with this - And I quote "First they hate, then they copy"

"It's sad to see people so desperate and insecure about themselves, that they need to copy everything about someone. They can try so hard to become that person, but in the end, all they are stuck with is themselves........
Be yourself, because you're wasting your time trying to be me"


Friday, 8 April 2016

In Loving Memory of Nancy Tornillo-Harris

Onto More Important Things............

Ok, sarcoidosis awareness couldn't be more imperative right now ... We lost another sarcoidosis sister overnight .... I will be making something to honour her memory but for now I will leave you with this ... I made this earlier in the week ... Have a good day xxx

Getting This Off My Chest

Ok, I've been keeping very quiet about this, it's not the most important thing in my life, in fact it pales into insignificance as the most ridiculous and stupid thing anyone has ever done to me.  I'm not, for the time being, naming and shaming, I would like to as I know this person will be stalking me on here as well as my Glitter Graphics account and possibly Facebook even though I've blocked several of their accounts on there.  Unfortunately I can't block this person from seeing my Glitter Graphic account, second of all why should I?  It's a wonderful place, filled with amazing artists and friends and I'm really happy on there.  No one is spoiling it for me, despite efforts made to do so in the past.

So, how did this all start? ..... I'll tell you, from the beginning...........

I was befriended by someone last year over on GG and also Facebook, they then, for absolutely no reason, removed me from their Facebook account and their GG account ... Ok, fair enough, that's fine with me, a shame, but if that's how they feel then I'm not about to enforce myself upon anyone ... We are all free to make our own minds up ..... However, it wasn't just left there sadly.... It was brought to my attention that this person was foul mouthing me on GG, they thought that because they commented in their own language no one would be any the wiser ... That's not very wise, given that there's such a thing as Google Translate .... I do have screenshots of ALL the abuse by the way.  So, after finding this out, I just ignored them, it seemed the most sensible thing to do, they had and probably still have friends on there and the last thing I wanted to do was cause bother, I'm interested in making graphics and chatting to friends, not bullshit .... So, time passed, everything seemed fine despite the fact my flag counter was notching up visits from the country they are based in ... I then find out that everything I'm doing is being copied by this person .... Not exactly, but in their own way .... I got news for you girl, my ideas aren't probably original, I just get them, try them out, they either work or they don't, but I don't claim them to be an original thought, so why the fuck would you copy them?  You have talent, yet you stalk me even now, still doing the same thing but on your giphy account ... Just, why? What's your point lady? ... When you got caught out copying, when you were proven to be copying you were stripped of your Official Artist title, you abused me on Facebook when I was announced as an Official Artist, you, in your own language, to a friend of yours publicly on GG called me arrogant and stated that I think I'm the best ... Well, here's a bulletin hot off the press, you're wrong ... I don't think I'm the best at all ... Did you ever stop to think that I'm in awe of the likes of Keith Garvey and Anaterium? ... Many more besides, but they are 2 of my ultimate favourites ... They are the best ... Not me, certainly not you! You spread lies about me using many identities on GG because you got yourself kicked off through your disgraceful behaviour and you called me a bitch .... Now, here's the thing, you were a proven copycat, ok? ... I've kept so quiet about all this, this was months and months ago, yet here I am sat here notching up your visits on my flag counter, oh by the way, Blogger also shows how many visits I get and from which country .... Bet you didn't see that one coming did you? So I know damn well you are, even now, stalking me .... You're absolutely pathetic ... I've seen your latest on your giphy account and yes, you're still copying me .... Let me tell you something you vile piece of work .... Creativity is not a competition .... I saw that on a friend's account and think it is a marvellous and true statement .... I also think you have some serious mental issues to still be doing what you're doing even now .... Thing is, if you'd been nice to me, if we'd been friends, it wouldn't even have mattered quite as much ... If you'd come to me and asked me how something was done, I would have gladly taken the time to share with you, explain to you, helped you with anything you might have asked for ... I'm flattered when I see someone taking ideas from something I've done and use those ideas in what they do, it is a huge compliment, but from you, it's plain fucking creepy and nasty .... Whatever this problem is that you have, you need help .... I think you're jealous ... I don't know why you would be, but you strike me as a very jealous and insecure person .... I'm glad you have friends, I think you need them .... Just don't drag them into your bullshit and expect them to be there for you .... That's the best advice I can give you, you're certainly not deserving of my time, or my compassion .... I hope you realize that you are very talented someday and don't need to stalk me like you do ... I hope you get over it and move on .... I've kept this away from my GG and Facebook accounts for a reason ... You don't belong in my circle of friends and it's not fair on them to witness you slagging me off and it's not fair on me to have to sit there and say nothing while you do ... So, instead of it going onto a pleasant and happy place, you've earned yourself a spot on here ... You don't deserve to be a part of anything I do .... I know you will read this because you can't help yourself ... You have to stalk me, it's become part of who you are now, you have to hate me for no reason, so I put that down to jealousy .... So read this and move on .... Stop your bullshit and get your act together .... It's fucking sad and as I said earlier, it's absolutely pathetic .... Move on...... My life, my graphics .... They are of no concern to you ... They are none of your business and you should have moved on a long time ago.... I don't wish bad on you, I've not stooped to your level .... You need to leave and don't come back.  Good luck.