Sunday, 31 January 2016

My Life With Sarcoidosis - Continuation Of Chapter One

Ok, so I didn't go into much detail in Chapter One, I never really hit on the subject of sarcoidosis but I have a reason for that .... I wanted to give you a proper, in depth background build up before plunging into the world of sarcoidosis and who, what and why kind of thing.... So, let's time travel ... Let's go back to 2001 .... Christmas .... Life was amazing, my husband had brought our sons, Luke and Harry a Playstation 2 with various games including Gran Tourismo and the steering wheel ... You should have seen the boys faces when they opened their present ... It was magical .... They couldn't wait to set it all up and have a play and even I couldn't wait to have a go! .... They were running around happily playing with their older cousins while waiting for dinner to cook .... It was a wonderful family setting, my husband being told he's working too hard, (which he was but never listened) and having a drink with his sister and just chatting in general, the kids all playing nice ... Those were the best times..... As the early months in 2002 passed, I noticed my husband was looking more and more sick .... He'd been looking swollen facially since the spring of 2001 and I remember him being in bed sick for a week (most unlike him) and being given anti biotics for a chest infection .... The doctor called him back in as he'd had a blood test .... I came with him and we sat there receiving the news that Dave's white blood count was rather high but it could be because he was fighting an infection, come back if he feels worse .... He never went back ..... I look back and can't help but wonder if the doctor really did the right thing by telling him to see how he feels .... Most unwise .... I do feel Dave should have been referred to the hospital for further investigations by a specialist .... But, we can never go back and we certainly can't live by "what if" all the time.  But what if he had been investigated further and what if they had caught the leukaemia earlier? .... Would he be here now? .... Would things be different and perfect again? ... In May 2002 my husband got sick beyond anything I had ever seen before in anyone ... He was constantly coughing, vomiting, he looked very pale, almost grey and he had cuts that weren't healing up ... He was an electrician so spent his life on building sites and using heavy tools so was always ending up with a cut or bruise somewhere, bless him .... He was worrying the life out of all of us, not responding to antibiotics and we wondered if he might have pneumonia as his cough was terrible ... I remember us receiving the news he had leukaemia ... The hospital phoned through to the doctor with his blood test results and all hell broke loose .... My grocery shopping arrived and I just left it in plastic bags on the kitchen floor, we had to pack as he was being rushed into hospital .... I dropped the boys off at his sister's and that's the beginning of the end of life as we all knew ... Perfection shattered into the universe .... All of a sudden it didn't matter about the house, the car, what to do for dinner and what to grumble about on tv ..... All that mattered was Dave, my boys .... They NEED their daddy .... He HAS to beat this ..... From Barnet General to the UCLA in London .... We were told 4 doses of chemotherapy should put Dave into remission ..... Cytarabine and Daunorubicin ... I remember them well ... Those chemo drugs were brutal ... He was so sick with them and lost his beautiful black hair... The hospital always gave us hope he would recover ... We had hope he would too .. None of us ever imagined he wouldn't beat this bastard ... He had everything to stick around for ..To watch his sons grow up and go out for a cheeky beer with them as they got old enough and it was his dream they carried on the family business and became electricians too .... They had their whole futures sorted .... Ok, so we get to the third dose of chemo and this is where everything started to fall apart even more ... I was driving Dave back in to UCLA after his short break at home .... He said he had a rotten headache and blurred vision and it was affecting him (most unlike Dave to say anything like that as he never complained) so he mentioned it to the doctor when we arrived and was given a spinal tap .... That's when we received the news the leukaemia was that aggressive it had spread into his spinal fluid and was flowing through his brain ... Our bodies apparently have a natural barrier between our central nervous system and our other system .... The leukaemia had crossed that barrier, meaning Dave would now require chemo injections into his spine regularly to tackle it .... That wasn't all .... He now needed a bone marrow transplant to save his life ... We were told in no uncertain terms that if he didn't have one he would die .... Yep, we couldn't find a donor .... We did, however, find one match that was considered acceptable but they removed their name when push came to shove .... So, we were then faced with the only other option which was a stem cell transplant using Dave's own bone marrow ... What the doctors would do is extract some of Dave's bone marrow and treat it so it's leukaemia free then transplant it back into him .... Sounds great huh? ... Down he goes for surgery ... Back up he comes, we receive the heartbreaking news that his bone marrow is far too damaged because of the chemo for them to use it .... Back to the transplant registers .... In the meantime Dave was to receive maintenance chemo in the hope of keeping him in remission long enough to line up a suitable match for his transplant .... In February 2003, I went to visit him in hospital, I always planned to stay and either my mum or Dave's sister would look after Luke and Harry for us .... The reason I went to stay indefinitely with him, this time, was because we received the awful news that he wasn't in remission any more .... Time was truly running out ..... He woke up the next morning and I instantly knew something was wrong, he was struggling to respond to me and his sister phoned, Dave couldn't grip the phone very well and I rushed to get a doctor .... Yes, he had a stroke .... This happened on the Tuesday morning .... By Tuesday evening we were surrounded by Dave's family, some friends ... You couldn't move in his room .... A stroke and leukaemia relapse all in the space of 24 hours .... He gradually become non responsive and finally passed away at 7.30pm on Thursday evening .... I remember the very moment his heart stopped beating .... But then everything else in parts is a blur ... Maybe it was shock? ... I don't know, I remember my brother and Maria driving me home, my dear friend Cecilia was waiting for me ... Everything was just so ..... Unreal .... Cec and I chatted til the early hours of the next morning, all about Dave, how she first met him after she saw his head pop up in her floorboards! LOL ... She lived 2 doors up from me and was having work done in her home, she asked locally about a decent electrician and our neighbour, Mrs Parker, mentioned Dave .... That was the start of a great friendship .... The clock on the kitchen wall had stopped at 7.30 .... I replaced the battery ... Nothing, it wouldn't work again .... I bought new batteries for it, tried those and nothing .... It's never worked since .... So .... It's now February 2003 ... The funeral was standing room only ... It was beautifully done and everyone did my Dave proud by being there .... If any of his friends who were there read this after finding my blog through Facebook or wherever else .... I have a few things to say to you .... Where are you now? .... You promised Dave you would be there for me and his sons and ALL of you disappeared apart from three of you .... I haven't seen any of you since the funeral ... All your false promises and loose talk .... Not one of you bothered ..... I can rattle off the three names of real friends who actually bothered to check in on us .... You should ALL be ashamed of yourselves ... Shame on you! .... As for the guy who screwed my husband over when he was alive and then tried to make all nicey nice with him after he heard the news just to lighten his own load, you ought to be ashamed of yourself too, you selfish, arrogant, self centred little bald shit!! ... How do you arseholes sleep at night? You left a distraught widow and her grieving children in their time of need and as for you Matthew Moore, I hope you rot for what you did to Dave and all the thousands upon thousands you stole from him just so you could have it all cushty.

Ok, enough of that ..... So .... It's the summer of 2003, I decide to try my hand at working from home ... Why not? ... I wasn't quite ready for the world outside, but just something to do to take my mind off the loneliness while the boys were at school, it couldn't hurt ... Right? I can't even begin to describe the loneliness, the complete void, the utterly numb emptiness within... As far as the job goes it went ok to be honest, but it wasn't a steady income and there was no way I could look at this job in a long term sense .... I needed something, I had to get out that house .... I don't know how some people feel towards the paranormal but oh boy, my old house had plenty of inexplicable going's on over the years ... The vivid dreams, the clock stopping at the time my husband died, when we had the extension built on the side of the house, the spooky events went into overdrive ... I was never comfortable in that side of the house, I always felt like someone was watching me, my kids kept saying about someone in their bedroom too.... Just so much which I will save for another time ..... 

I will continue in another chapter, no I've not hit on the topic of sarcoidosis but if you have read this all the way through you have my heartfelt thanks and appreciation ... I always feel it's best to lay the foundations to a situation before presenting with the actual facts that are the here and now, so once again. my thanks .... See you next time where I will continue where I left off ... We will time travel back to the summer of 2003 ... Until then........!!

A Very Moving And Honest, Informative YouTube Video Regarding Sarcoidosis

Definitely worth a watch, you see these people?  They're ALL amazing!
Please do what you can to help, by sharing/watching ... That's more than enough, thank you!
We so need a cure 

Saturday, 30 January 2016

My Life With Sarcoidosis - Chapter One

Ok, I've been sort of avoiding this post, not because I didn't want to speak about it, more so because I need to be in the mind frame whereby I can put it all down in a way in which I hope everyone reading this will understand.  You see, it's not just life with sarcoidosis, I have a history which plays a part, I believe, in who I am sitting here right now typing this blog entry.  My life before 2002 was pretty much perfect.  You know the perfect life? ... That life where you're settled down, married, have 2 beautiful children, beautiful home, nice car on the drive and husband running his own business so you and your kids are well provided for? ... That was my life, surrounded in bliss at home, thinking I had it all, great friends, family ... The whole package. Looking back it was an illusion, it all became real on 13/02/2003 when my husband and childhood sweetheart died.  He died at 7.30pm that evening.  My clock at home stopped at that exact time and never worked since.  

So, in my time of grieving (which never really stopped for me as I still grieve) I discovered that most of my friends weren't real friends at all, my in laws turned vile towards me and I got sick.  No one knew at first why I was suddenly and gradually becoming more reclusive, less active, non communicative and exhausted .... Instead of offering their help, they caused as much trouble and upset they possibly could, compromising home life for my sons through their judgment and dislike of me..... If only they had reserved such judgments, if only I had the blood test a LOT sooner, they would have discovered pernicious anaemia, that was just the tip of the iceberg. 

By this time I had lost my beautiful home, I shut out all fake friends and family and I found myself very alone.  Yes I had my sons but my mindset was that of someone deeply depressed, through lack of B12.  

I sunk into the worse depression I have ever experienced, feeling worthless, useless, hopeless, my hair was falling out, I couldn't tolerate sunlight, I couldn't walk.  I was bed ridden mostly.

So, how did I come back from that? ... My sons pretty much, I remember my eldest cooking dinner, cuddling me while watching the 2012 Olympics and he has no idea how much he sparked my self worth back into action ... Still very weak, sick, but able to tolerate daylight more, we agreed that I should take care of my mum who needed it after coming home from a long stay in hospital.  Gradually, thanks to my kids, my mum and my sister, my life began to look up for the first time since 2005 .... I began to understand that there are people who love me, who do understand and want me to do well, it was so hard taking those first steps, having to go out every day, facing people, communicating ... Something I thought I'd never do again.  6 months later I was a different person, my mum was doing great, I was too and I went back to work after a year of continued therapy at home and a referral to Work Solutions.  

Then bam, I got sick again .... Chapter two to follow............................

Monday, 25 January 2016

Back At Work

Yep, my week off sick flew by, in lots of ways I'm happy being back at work ... It's another distraction from the intense pain ... It's a battle first thing in the morning especially, I have to wake super early to allow my medication to work, just to enable me to get out of bed .... Yes it really is at that point now ... I am currently taking over 10 medications for this and that ... If I don't then I just get more sick .... At least they help me maintain a sense of normality, I'm so thankful the flare up is easing now .... It's almost time for me to get to bed but before I do,  I just want to say that life is precious ... We have no idea how much time we have, live your life, you never know when your once good health will be taken from you, none of us know what awaits us ... I do believe in fate, I believe we meet people for a reason, we share life experiences, we find enriching friendships or we learn from our unpleasant experiences and hopefully move on .... Sometimes people come into our lives to teach us, good or bad, we learn from their existence .... I'm so tired of waking up to find we lost another Sarcoidonian (snowflake) ... I don't want to lose anyone else ... My past is filled with enough sadness and loss, I've had enough .... It's not something I will ever accept, some say it's the nature of the beast ... That's accepting this disease, I refuse to do that ... I can live with it, it has changed my life but I refuse to ever accept it as a defining part of me ... I will never accept Sarcoidosis ... It's behaviour is parallel to cancer in many ways, it invades your system, leaving you at risk of  internal organs under attack including your heart and brain and .... Well, I don't need to say any more .... Distraction is a wonderful thing, I've been busy walking my sweet, beautiful little dog, making graphics and just doing stuff us mum's do when we have dependent kids ... I need those things to keep me balanced and distracted ... I need my job, it's not about money, it's about the distraction, feeling human again by being around people who gel well as a team ... So, for now, I will say goodnight and I wish you all well, I hope you sleep well and remember, tomorrow is never to be taken for granted, it's now, being here and now, that's what counts, if you can find a way to live your life with that in mind, I hope it enriches your life as it does mine ... Sure, I have my share of low points, but they never last .... Something/someone always gets me through somehow ... There's no magical cure as to how we handle any chronic illness, but it takes a real tough cookie to keep bouncing back and kicking this world right back in it's cruel nuts! Keep kicking nuts all of you!
Goodnight, sweet dreams xxx

Friday, 22 January 2016

I'm Showing Off Again LOL

Just showing off a Valentine's Day tag I've just completed .... I'm pleased with this one :) 

Here it is!!

For anyone who suffers chronic illness and pain, I know it's hard but if you can find a hobby and/or distraction from how awful you feel, then try and focus on that if possible ... Tag and graphics making are my sanity in a lot of ways ... I appreciate the distraction as I'm not focussed on my pain and how dreadful I feel ... Personally it helps me a lot.

Lots of love and hugs

Chronic Pain

Just touching on the subject of chronic pain, it's no joke and it's ok if you have a meltdown .... No one truly understands how you feel unless they feel it too .... Life's tough, we fight every second to keep going despite the horrendous pain, sometimes we become very frustrated and understandably so ... It can be very isolating, we feel alone, sometimes we actually want to be alone .... We forget we are loved, the pain takes hold and nothing else seems to come into it other than our pain .... I'm the type of person who holds it all back until I have a massive, volcanic meltdown ... It shocks people, I wonder why as I hoped they might see it coming and ease up on me, but they generally don't ... If you're in pain and suffering, I feel for you ... I'm sat here and it's past midnight, I can't sleep because, yep you guessed it .... Pain! ... But I refuse to quit .... I try and think of pain free times, I try and create a distraction so I'm not focussed on the pain so much, I think of my amazing friends and family ... My phenomenally amazing Sarcoidosis family ... We're all in the same boat.  If you've found my blog through whichever source and you are seeking support, leave a comment and I'll put you in touch with some incredible people, who, like you and me, experience life with Sarcoidosis and/or chronic pain .... My heart goes out to you all .... I know how it feels to hurt, everywhere.

Goodnight, may you find peace within until the pain eases even a little.  You're in my thoughts.

Tuesday, 19 January 2016

Neurosarcoidosis and what you NEED to know!!

Ok, a very good friend and sarcoidosis brother passed this information on to me and I think it's vital that if you are worried and concerned that you or someone you love does have neurological issues in terms of sarcoidosis then you MUST, absolutely MUST read the following information which is  provided here on the  NHS Royal Free Hospital website ... If, like me, you suspect you might have neurosarcoidosis and have attended your local hospital for an MRI scan, WITHOUT CONTRAST and you've been told you're all clear, then you MUST read this information ... You absolutely MUST have the MRI WITH CONTRAST .... It's a battle, I'm symptomatic of neurosarc, however I'm still in limbo in terms of getting the correct MRI .... Please do NOT let this happen to you ... My consultant specifically requested my MRI be carried out WITH contrast and they failed to do so ... Therefore my symptoms continue, my condition shows no signs of improvement and I'm still left hanging .... Please read the information and either show it to your doctor or present it to your consultant at the hospital .. It is absolutely VITAL for those with sarcoidosis who are displaying symptoms of neurosarc and have no firm diagnosis ... If you are given a CT scan for neurosarc and given the all clear, it's inconclusive ... CT scanning isn't sensitive enough to detect neurosarc, therefore the diagnosis is incorrect ..... All information is on the website...... Take care of YOU!

Thursday, 7 January 2016

Happy New Year!

It feels like ages since I last updated so I'm just posting to wish everyone a very happy new year, may 2016 bring you love, great health, peace and prosperity .... Things with me are a bit of a roller coaster ride, I'm back at work and I'm enjoying it ... It's so hard getting out of bed when you're in so much pain every morning but it is worth it to keep going and to push yourself as best you can .... I will write a longer blog next time around, it's very late here, almost 1.25am to be exact .... I have to be up early, so I'll say goodnight, I hope you all had a wonderful Christmas and that 2016 brings you everything you could ever wish and hope for.

Oh and here's a photo of me, just in case you're wondering what I look like!

Hugs, Gina xx