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 

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............................

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

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

xxx

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.

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!

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