Hello my friends, it’s been a while… but then it’s been a while since I had the energy to write too, but this one has taken me the better part of a week to put together, so I guess I’m making up for it :)
If you are planning on reading to the end of this one, I’d suggest you grab yourself a cuppa or a glass of your favourite cold beverage… Maybe you might want to fix yourself a snack while you’re at it too because as I sit here at the beginning of this ramble, the end seems very far away – just a small pinprick of light at the end of a scary dark tunnel, a tunnel where there may be any number of unknown iggly things just waiting to jump out at me to trickle their terrible tentacles down my spine and – ergo – your spine too.
Let me start by explaining the title of this post. I had a number of semi dramatic titles that I felt might be apt. When friend becomes foe was one of the first ones that jumped into my mind. Grant me a healthy dose of perspective followed closely on its heels. And then as the outlines of this story coalesced into something tangible the possible titles came at me thick and fast…
Clarity with a needle in my arm
Awakening after a deep dark slumber
A map to finding my own rainbow (somewhere over the rainbow was playing)
God save me from myself
and then when this last one came along, Extracting ones head out of ones own arse I realised that the title doesn’t really matter, what does matter is the story inside me that needs to get out. So, “All of the above” it is :)
This story’s roots lay buried in the past. Twenty years ago at the age of 19, after a brief but violent bout of unexplained illness, I was diagnosed with Crohns disease (warning – graphic medical terms and some images may cause distress, if you have a weak stomach don’t make with the clicky clicky!)
I was submitted to a barrage of invasive tests, became a human pincushion, stumbled upon the unpleasant discovery that doctors were not Gods, and was prescribed a number of drugs with horrid side effects to control my crohns symptoms which were, at that time, debilitating. I eventually lost faith in my specialist after he told me I shouldn’t ever have children and stopped seeing him. This was the beginning of my sticking-my-head-in-the-sand phase which lasted about 15 years :) I didn’t return to the medical profession and its league of learned gentlemen until last year. By the way, for those readers who are new to my ramblings – I have since been blessed with two beautiful boys who are now approaching 11 and 14 years of age – stick that in your pipe and smoke it Dr he-who-shall-remain-nameless!
Over the years I learned to cope with my crohns on a daily basis. I self medicated when necessary and was mostly able to live what appeared to be a relatively normal life (to the outside world at least) with the love and support of my family and especially my husband.
A few years ago now I came upon the realisation that stress was one of the main indicators of a flare up, but it is only recently that I have learned some medical facts of the disease and medication that support this theory. So I have undertaken measures to ensure my life is as stress free as is possible in this modern world. I live in a secluded supportive community, next to one of the most beautiful beaches in the world, a walk upon which never fails to soothe my soul. I have limited my working hours, and indulge my creative pursuits as often as I possibly can. I sleep when I need to, and try not to feel guilty about my many nanna naps.
However as much as I try to keep my stress levels to a minimum, sometimes shit just happens that is out of my control and before I can even acknowledge to myself that I’m stressing about stuff my body lets me know as it starts to break down. I’ve found myself in a bit of a vicious cycle over the last 18 months or so, what with one thing and another, and as a result have spent more time on prednisolone than off, at times only just keeping on top of my symptoms. High doses and long term use of this medication brings its own set of problems. I’m terribly overweight and have the classic steroid moonface, both of which make me awfully self conscious and give my self confidence a good kick in the gut. Long term steroid use has made my bones brittle, my eyes photosensitive, I get itchy skin, mood swings and if I catch a simple cold my body had no resources to fight off infection so I’m sick for aaaaages.
And as if that isn’t enough, coming off the drug presents its own set of problems, not the least of which is a possible life threatening lack of adrenalin.
But with all of this, and we’re really just scratching the surface here, over these past 20 years I have made a conscious decision not to let it get on top of me – I’m a naturally positive, glass half full kinda gal so wallowing in self pity just isn’t my style. As far as I am concerned I live a charmed life. I have a husband who adores me, two incredibly bright, good hearted kids, I totally lucked out scoring a job which I absolutely love and am extremely passionate about, and live in a community of wonderful caring people in beautiful place with a climate that suits me to a tee. These are the thoughts I try to keep foremost in my mind, but sometimes I slip…
Last weeks visit to the specialist resulted in me having to undergo an iron infusion, because my levels were extremely low. At least that explained why I was struggling to stay awake until lunch time! My doctor mentioned that on the odd occasion some people had a reaction to the infusion, and very very rarely the reaction was severe enough to send someone into anaphylactic shock. He didn’t make a big fuss about it so I thought it would be cool.
In the days before the internet, that would have been the end of it. I would have just toddled off to my appointment, a little nervous for sure, I mean who isn’t nervous about needles? Later that night however, I decided to go visit my friend google… and I so wish I hadn’t. My friend turned foe. There was horror story after horror story after gruesome bloody tale written by people who had had this treatment and stopped breathing, blacked out, had to be resuscitated, given adrenaline, ALMOST DIED, entered a long tunnel, saw grandma who had passed years ago in the light saying “Goooo baaaaack…..”
!!!!!!!!!!!!!!!!!
Ok, so that last bit may be a bit of an exaggeration, but there were some truly horrifying stories. It freaked me out to the point where I almost cancelled. And… whats even worserer… it freaked me out enough for me to admit to my mum that I was scared. This was a truly epic fail on my part. See there is a reason I don’t normally share with people and that’s because they will usually stress, and when they stress about me, I stress about them stressing about me and I end up getting sicker… pfft!! I think I also don’t share because I am deathly afraid I will look into their eyes and find pity lurking there. I categorically do not want or need anyones pity, they need to save that for people and causes that really do deserve it.
In the end though, some reassurance from my dear friend Rosemary who used to be a nurse in a previous life, and a stalwart hubby who only wants the best for me insisting that I needed to go, saw me rocking up to the hospital at my allotted time.
Needless to say… I survived ;)
It was a bit harrowing especially as my veins had gone into hiding and they had to have a couple of goes at sticking me, but aside from that it really wasn’t too bad. The nurses were awesome to the power of rad, and I got to watch a couple of episodes of Glee without hubby or the boys ribbing me about it. The food was even quite palatable!
What really hit me hard sitting in my little corner of the medical day unit for 6 hours was watching the steady stream of oncology patients coming in and out of the clinic to have their treatment. Most of them had permanent canulas, so they don’t damage their veins from being stuck so often. There were people having stuff injected into them that was (I can only presume) so toxic that the nurses had to fully suit up in protective gear to administer the drugs. There were women making creative use of bandanas and hats to hide their hair loss – or maybe I am wrong there. Hiding something indicates shame, or embarassment… perhaps these brave women were simply keeping their heads warm – it was a cool day after all.
Without exception, every single patient that came in to have treatment for their cancer had a kind word and perhaps even a laugh to share with the nurses.
And you know what? I felt ashamed.
Ashamed for being so egocentric as to believe, for a fleeting moment, that I had it bad. Ashamed to have inflicted these needless concerns for myself on others dear to me.
But there was an upside too (here’s the glass half full kinda gal speaking up). I also found myself incredibly moved and inspired by the bravery and grace exhibited by my fellow patients that day. And because of them I decided that it was time to break my self imposed silence on living with crohns disease. I’m starting by posting my positive experience with the iron infusion everywhere I can, and I will encourage others to post their positive stories as well to hopefully give others a more balanced view than was afforded me.
Think globally, act locally a phrase often bandied about, but nevertheless apt in this situation. I can’t fix the woes of the world, but if by sharing my personal experiences in my small corner of the internet makes it a little less scary for someone else, well that’s a win in my books. And if my ramblings help someone who has a person in their life living with crohns understand a little more about what that person is facing then that has to be a good thing too surely?
Life is one big learning journey, I thought I might share a few of the lessons I have learned this past week or so.
- be informed, but know that people are more inclined to write about bad stuff than good.
- if someone reaches out to you because they are scared – for whatever reason – sometimes all they need from you is to hear the words “It’s going to be ok. I’m here for you.”
- no matter how bad something seems, there is always someone going through something worse.
- an experience shared may change a life
- if you are living with a chronic disease, don’t stick your head in the sand. Get care, see a professional or you may find yourself in a life threatening situation thinking “If only…”
- be very verrrrrrrrrrry careful what you share with your mum if she is on the other side of the country and can’t express her concern for you by coming over and giving you a hug ;)
Heartfelt thanks to anyone who has read even a part of this very long ramble, I can only hope that there was some small thing that resonated in it for you and maybe made you stop and think for just a moment.
Tracey Mac
Oh Rhana, sending you a huge hug from freezing Ballarat…
What an amazing insight into something that obviously scares the bejesuz outta you…and kudo’s for sharing and saying it all out loud in such a way that could make me smile….even though I wanna hug you to bits!!!
Totally love your perspective and gorgeous soul xxxx :))
Rhana Griffin:
Ahhhh yes, thanks for reminding me Tracey. That is another lesson learned that I forgot to mention.
Never ever… and I mean N.E.V.E.R knock back a hug…. ever. Hugs surely have to be the very best medicine next to laughter :))))) xxx
Sue Wickham
Thank you so much Rhana. Our daughter has just been diagnosed with Crohns, she’s 23 tomorrow, and has been quite sick, but like you, I suspect keeps most of it to herself. Sharing your story has certainly given me more of an insight, not only into the illness, but also into how she might be feeling. Thanks for helping this Mum to be more understanding of an illness that needs to have more public awareness.
Rhana Griffin:
Oh Sue. No I need to thank you. Right here, you are my one person, you make writing this all down and putting it out there worthwhile. I’m sorry to hear about your daughter, being diagnosed with crohns, because there is no cure, can sometimes feel like you have been told you have a terminal illness, but without the death sentence. I know that probably sounds odd, but that was how I felt. You can also feel terribly lonely and isolated, because while crohns is certainly more out there in the public psyche than it was 20 years ago, it’s still got a ways to go.
I think as a Mum, you need to be prepared for a lot of “feeling helpless” moments. You know, when our kids get sic k our hearts bleed for them, and if they were truly seriously ill we wouldn’t think twice about sharing a lung, a kidney, bone marrow…. whatever they needed it would be theirs if we had it to give. But with crohns, there is really not a lot you can do except be there if she needs you. I know my Mum found it terribly hard, and still does.
Sue, if you ever need to chat with anyone, you know where to find me. Please please PLEASE don’t hesitate to ping me ((((hugs))))
Valerie Rosen
wow! ….wow. thank you very much for sharing rhana. amazing story. brave….and very well written. have you considered making this more public? do you mind if i share this on my google+ page? it will reach maaaaany people! please let me know.
big hug,
val :-))
Rhana Griffin:
Hi Val, thanks so much for reading and offering to help spread the word :)) Please feel free to share, that would be awesome!
Lisa Jewell
I read every word, and quite honestly I wish more than ever to be near you. I know you Bellababe, you are the glass half full gal, you are the positive tempest, and you are wise, caring and so fucking strong…
And though yes it is very true that what you witnessed while in hospital… those living with cancer are dealing/fighting the biggest fight one can…
Each fight is subjective, gosh I’m sure this is not going to come out right….so I think I’ll not try to form this any further.
I shall simply say
You are my Hero,
Have been since you set me straight about a few life things
And shall remain so,
Always,
Lisa xxxx
PS – I applaud you for getting the positive message out there, for I not long ago went through my darling Leeamber falling apart because of all the negative things she read online about her ITP.
Rhana Griffin:
Gah! It makes me so cross to think of your Leeamber having to suffer any more than she already is, but I totally get how it could happen. The internet can be so fantastic when researching for information but at the same time…. it can be total bitch.
Lots of love to you and yours babe, I know you are doing it tough and wish I could be there to give you pink fluffy dressing gown cuddles xxxx
Matt Penfold
Jeeze Rhana, I’ve tears streaming down my face, I don’t know what to say other than that you are inspirational and and have articulated this beautifully. I’m sure your positive attitude is your most valuable asset (apart from your family)
Hugs x
Rhana Griffin:
Hey Matt, thanks so much for reading :) My hubby reckons I had rose tinted lenses welded to my irises at birth… all I can say is it sure beats the hell outta moping my way through life ;)
Angela King-Jones
I love how positive you are, inspiration to all of us with little problems.. thank you for sharing dear and sending you a big hug
Rhana Griffin:
Thanks for reading and taking the time to comment Angela :)))
AngieLartwork
Hi Rhana, I’m glad you are out of the woods so to speak and in a better place. I have known friends of friends with Crohns…Not the best thing…I wish you better health and happiness…
Rhana Griffin:
Hi Angie, thanks for reading. Luckily I came to my senses and am now under the care of a fantastic GP and an awesome to the power of rad specialist – better health is surely on the cards :)
Monica M. Scanlan
Rhana, I am so sorry to hear about your illness. My mother has Crohns disease and has suffered from it for more than 50 years. You need to take care of yourself, watch what you eat and do your best to rest and avoid stress, as best you can.
Life is a journey and it has many ups and downs, twists and turns. We do our best to navigate those twists and turns and learn along the way.
I hope you feel better, stay well and if there is anything I can do, please let me know.
Take care, my friend!!!
Rhana Griffin:
Hi Monica, thanks so much for reading, sharing about your mum and sound advice. The main reason I went back to the doctors after so many years is concern about how the disease will affect me when I am older. I’m hoping to get things well under control over the next couple of years so I can maintain my health and enjoy my later years exploring Australia and having adventures with hubby :)
Rhenastarr
Along with the rest with a great big bear hug. For your strength, your positivity, your bounce back attitude and for living with the predinosone. I was put on a high dosage of that steroid nightmare some years ago for the disease I had acquired in my left eye. I can relate about the moon face and the weight gain. It is so frustrating that most of the treatment drugs out there leave you with a horrid side effect. I am blind in my left eye due to the disease, in spite of the pin cushion I was for many years. It is always such a boost to see someone being so positive about the hand that life dealt to them. There is always someone else who has things a little harder and it is the courageous person who has the ability to see through their own misery to feel compassion and comraderie with others. I salute your bravery my friend and thanks for sharing your journey with all of us. My thoughts and prayers are with you and your family. May God continue to shine his love upon you and give you the strength to endure. Blessings to you.
Rhana Griffin:
Hi Rhena, thanks for the hug and for sharing your story. It’s so encouraging to hear from someone else who knows the horrors of prednisone, and I find it amusing that the two side effects you mention (the moonface and weight gain) are the two that trouble me the most. I can put up with all the other stuff, but it is so disheartening when you are overweight, through circumstances largely beyond your control. Perceptions are hard to shift, and it hurts sometimes to know that others are judging me for how I look.
Take care… and thanks so much again xx
Karin Taylor
Rhana, today you touched me with your strength of spirit, your brave heart, there is not much that is worse than Crohn’s, it’s a terrible thing, and yet you face it with optimism and brightness. For a few years it was suspected that I had Crohn’s but after all those invasive tests, it turns out I have Coeliac Disease, most are asymptomatic, however not in my case, I am exceedingly reactive and it makes life very hard. I know the misery of prednisone/cortisone drugs having watched my father take it for the last 20 years and understand the enormity of having to take such a serious drug, which in itself causes dreadful problems….and is very difficult to reduce that dose without other symptoms recurring. I have to say, that I feel so proud of you, that you would break the silence and share so openheartedly with so many….I am certain that what you have shared will help others. The internet is a very scary place, when we start to investigate our illnesses and procedures we may have to go through. The last one I endured, my temperature soared to nearly 40 degrees, from the sheer anxiety. I also have a diagnosed anxiety disorder and am struggling through a depressive illness. I rarely talk about it, but I thought I would just open that door a tiny little bit…..because you did……my deepest and sincerest wishes for you with this illness….I can honestly and openly say, that the most wonderful thing is that you have this wonderful support all around you, as do I….however, sometimes, that is not enough and as you say, we need the help of doctors and professionals. Please anyone reading this today, reach out and ask your doctor for help. It is scary, but it’s peace of mind. Big hugs dear Rhana…..and let’s hope that one day soon, there is a cure xox
Rhana Griffin:
Hey Karin ((((hugs)))) Thanks so much for sharing your experiences. You know, here’s me, thinking that by writing this I may be helping others… and then I turn around and get this huge bonus of people sharing their stories with me… I mean I hate that people are going through similar things, this isn’t anything I would wish on anyone, but it is a comfort to know that there are others out there that have felt the same, had the same worries, the same concerns. It makes one feel less alone I think, and feeling alone is a terribly dangerous thing.
I’m currently on the wait list for another colonoscopy and (a new one for me) a gastroscopy where the doctor will also take a biopsy and test for Coeliac. While I’m keeping my fingers crossed for a negative outcome on the one (all my favourite foods are rich in gluten!) if I end up having Coeliac, don’t be surprised if I come knocking on your door for advice :)
Take care Karin
xx
linaji
Hugs… writing always seems to relieve and here I feel your beauty shines through. I am so pleased you are allowing all of what you have to give at this time in life, reveal itself. What an incredible journey you are on as I am excited for you and for me too! I love reading inspired lives like yours, it assists me to welcome my own.
Sending you much appreciation and again,,,, Hugs
Rhana Griffin:
Wow Lina…. you get it! I am on an incredible journey. I was just saying to my aunt the other day that I firmly believe the universe tries its very hardest not to give us more than we can deal with. And while living with crohns has its yukky parts, it is the very essence of living with the disease which has made me the person I am today. I very likely would not have anywhere near the strength and outlook on life I do today had I not lived the life I have.
Karin Taylor
ps…one thing that really helped a friend of mine with Crohn’s Disease, was Fish Oil in large doses……aloe vera juice was one thing that helped soothe and heal my tummy……but we are all so very different, and we all respond differently to these kinds of natural treatments, some help some, some help others….I am just so grateful for your support system….blessings, karin xxx
Rhana Griffin:
Funny that… I was taking fish oil at one stage but for a different reason. I ended up having to stop when my reflux got bad… I love fish, but not repeating on me at 10 o’clock at night ;)
Karin Taylor
pps….you are an incredibly gifted writer, i love your sense of fun and humour in the midst of all the troubled times, you managed to make me smile, despite the horror of it all xox
Rhana Griffin:
Score!! :)))
Warren Patten
Keep that positive attitude mate..good luck for the future Rhana..cheers Warren.
Rhana Griffin:
Hey Warren, thanks for stopping by :)
Rosemary Scott
Ohhh, Rhana, this is such a touching thing for you to have done, and I know what a big decision it was to open up and share this very private part of your life with us all. You’re so greatly loved here, and there’s a reason for that. You’re huge warm and smiley heart shines out across each and every page here at RedBubble.
I just have to look at the comments before me to see that you already have an enormous amount of support, but also know that by reaching out to others and sharing your story around the internet, you’re building a support network for others who experience Crohn’s as you do.
You are my dear, dear friend xx
Rhana Griffin:
Straight back atcha hun. Thanks for holding my hand when I was being a pathetic wussie girl, I’m sure you were everyones favourite nurse in your previous life :)
Bootiewootsy
Hugs, Prayers go your way from us. I have a husband that has many health problems, beside my own and admire your writting very much…
Carol
Rhana Griffin:
Hi Carol, thanks for reading. I sometimes think it is the poor partners of those with health issues that are the true heroes :)
MaryMac
wonderful are you, rhana!!
sharing your story helps all of us to learn. i’ve heard about crohns but didn ‘t know what it was until now. because of your bravery to write i’am now educated and perhaps in the future will need this information.
my mom was on prednisolone for 7yrs as she suffered from a rare lung disease so i understand about the weight gain and moon face she also experienced other terrible side effects from this drug but the prednisolone keep the lisions from growing inside her lungs and on the outside of her body.
she passed away in 2000 however she was the funniest person you’d ever meet and kept everyone entertained for she too always felt her cup was half full.
God bless you dear one and may all your days be good and pain free
peace love and light always
xoxo
Rhana Griffin:
Your mom sounds like she was a pretty wonderful person Mary, I am sure you feel blessed to have had her with you for as long as you did. Yes, the weight gain and moonface side effects of prednisolone can be really awful, and I know if I let it would probably have me depressed in no time flat, but the way I’m looking at it now is that there is a light at the end of the tunnel. I won’t always need to be on it, but for my health I do need to be on it now. Having a doctor that is completely sympathetic and not admonishing me for putting on weight is a big help too.
Thanks for sharing Mary :)
Mel Brackstone...
Oh precious girl, it’s going to be ok. I’m here for you, as you’ve always been for me! (((((HUGS))))))
Rhana Griffin:
And of course… thats all I ever really need from anyone. I hope you know I consider you to be a part of the “charm” in this charmed life I lead Ms Mel xxx
Anne van Alkemade
Rhana, do you mind me saying in your journal that you and I have shared the same journey. With me, the poor cousin Ulcerative Colitis, diagnosed at 19, and stopped responding even to myriad forms and styles of steroids when 33. It all had to come out. “Well again” has codicils. I also had the horrified fertility specialist look at my scars and say ‘no never, and if you do manage, don’t come back to me’. Sensitive chap. I’ve had courses of iron shots (bee sting followed by a full on punch) but not the infusion. But I relate so closely to your story. No, not pity, but sympathy because it’s damn hard EVEN when you’re ‘well again’. So don’t feel guilty when you can’t help but think ‘why me’. The fact that others may be going through something awful too is no reason to deny yourself some self indulgence at times. Just don’t let it take over, that’s all. xxx
Rhana Griffin:
Excuse my language Anne, but don’t some doctors just piss you off? The bedside manner of some leaves a hell of a lot to be desired. You would think that having to deal with people who are seriously ill all the time that they would have some empathy at least.
I just did some reading up on the differences between CD and UC so now have a better understanding of the implications of it “all coming out” and I’m so happy to hear you are well again, even with its tragic codicils. You are in my thoughts, and I am really really REALLY glad you shared your story here with us all. xx
PollyBrown
What a talented writer you are Rhana…I almost cried at your plight but admire your courage and ability to put into words about your condition in an amusing way.
I am one of those oncology patients (though not a headscarf one) having just had an operation to get rid of tumour number 3 in my mouth (no, I’m not a smoker). I also am a positive person so maybe I should write about my experiences too, to give a glimmer of hope to others going through the same thing.
Keep up the positive vibes Rhana and good luck to you sweetie. x
Rhana Griffin:
Hi Polly, if you have the inclination I would really urge you to write about your experiences. I found that I was discovering things about myself as I wrote this piece as it forced me to think closely about some things that I haven’t thought of before. And as you can see from the (omg overwhelming and totally unexpected) response here, by writing truthfully about our journey sometimes it can help others – which in turn, helps us too.
Take care of you Polly, wishing you a speedy recovery from your operation and no more in the future :) xx
Rosalie Dale
Oh yes this resonates so loudly – well said Rhana. Kudos and hugs for your courage, and willingness to make yourself vulnerable in order to help others. Most have a story to tell – yours is inspirational. :+) xx
Rhana Griffin:
Hi Rosalie! Thanks so much for stopping by. I know that your family has had more than its fair share of tragedy, so I really appreciate your kind words.
sensualtouch
I thank you so much for sharing. I believe it must have been more of a therapeutic reason that you shared this, and this is good. Very good. Being in the healthcare field for 26 years, I rarely give them pity. That doesn’t really help anyone. I give them support, help them find their inner strength to battle……or perhaps at times admit the this is really really the very end…….and I offer them prayers. Literally. And that is what I off you. My prayers. You have learned some valuable life lessons in all of this. Yes, it is tough beyond words for you at times, but your children are seeing an amazing strength in their mother. A strength that they will learn from and perhaps draw from as their life progresses.
If I could share one of many stories with you. I had a women who was bleeding incredibly. I was actually afraid that moving her could case her to actually die. That is how close she was. Scared and listening to her daughter’s screams certainly brought home the severity of the incident. I knew right then and there that the ONLY chance this woman had of seeing her family this Christmas depended upon me and if I could properly perform the necessary procedures to help her.
I told her this to an extent, and told her to pray. Pray hard, because I certainly was.
But this is not about me. It is about you. And I just want YOU to know that you are in my prayers Rhana! You and your family, because I am sure you know that this is not easy for them either.
Doug
Rhana Griffin:
Hi Doug, thanks so much for your prayers and for sharing your story. It certainly was a cathartic experience writing this journal, although I didn’t realise it would be at the beginning.
Hugh Fathers
Well written, wishing you all the very best . . .
Rhana Griffin:
Thanks so much for your wishes Hugh :)
barnsis
I have had a close relative who suffered with Crohnes and another who had to be on prednisolone for extended therapy. Yes it is true that it will make you paranoid with extended use!! At least it did him, a very positive person became a very paranoid one. I myself have been told after the fact that they were surprised that I survived but that is another story that doesn’t need to be told here. All of this is to say your story, very well written by the way, tells about the real you! You will be in our prayers. You will be OK! With your fortitude and attitude how can it be otherwise.
Rhana Griffin:
Wow! Paranoia! That is one side effect I am very glad to say I have not experienced. Emotional ups and downs yes, but I guess that is really only to be expected too. Thanks so much for sharing :)
Michael Jones
sorry to hear all this, I hope that it has all settled down now. I thought that I had this disease at one stage, I had all the tests to rule it out and discovered that it was my job which was causing the symptoms, I was super stressed at the time, but as I got to grips with the job and gained more knowledge of it and stopped all milk products, the symptoms decreased and haven’t come back since. so chin up and keep up the inspiring creativity and you will be fine I’m sure, all the best, cheers, M
Rhana Griffin:
Stress really does have a lot to answer for doesn’t it Michael? And it manifests itself in different ways. I’m so glad to hear that you got to the bottom of your issues and were able to recover… just make sure you take time out of life for yourself every now and again :)
David Murphy
hey Rhana…..really verrrry cool of you to write all that…..you are to be applauded!!!
BTW, I think, indeed, I KNOW that you are the funniest lil bumchkin this side of the poles, and a matchless humour you do have!
Glad you are my friend….and will stay that way!!
now, go get me a coffee…….
Rhana Griffin:
Bumchkin? Seriously? That has to be a typo right? Although I’m not entirely sure I like the alternative that springs to mind… Bumchin? Pah! I’m watching too much Glee lately.
You’re a sweetheart David, that is one thing I know for sure, and I’m certainly blessed to have you in my life.
BTW… hubby was razzing me last night saying all three of the boys (that would be you, Garth and Phil) had all had photos in the paper so far. Told me I was letting the team down if I didn’t submit anything ;)
Lorraine Creagh
From the sounds of it, you have a wonderful support base and attitude. You’re certainly on the right road by keeping your stress levels down and your attitude and spirits up.
I have a good friend that has suffered likewise for nearly 30 years. Her attitude seems to be very much like yours and she is doing well.
Huge hugs from me to you. xox
Rhana Griffin:
Oh that I do Lorraine! And it really does make all the difference in the world. The weight gain and moon face could really crush my self esteem at present if not for my hubby and kids who make me feel beautiful. Hugs straight back atcha! xx
ambient-1
Rhana, my heart goes out to you. But I truly believe that you will grow stronger and healthier and will be in peak condition again. Thank you for sharing this with all of us. Sending you love and healing light.
Rhana Griffin:
Thanks so much for stopping by ambient, and I am never one to say no to love and healing light so you send, I will catch! ;)
Irene Burdell
I did read all of this journal as I was enthralled by your bravery and positivity .
You are a marvelous person Rhana , you can always see things in a comical way and I am sure it must be the reason for you to be able to cope with your illness all these years, as it must be very difficult for you and your family . I think what you have done here and elsewhere will benefit a lot of people with this illness.
Keep your sense of humour and you will cope I know you will .You are so lucky to have a great husband and your children.
Love Irene xx
Rhana Griffin:
Heartfelt thanks for reading Irene, it really means a lot. And yes, I count my blessings every day to be able to live the life I do, surrounded by an incredible family that I absolutely adore.
Robin Young
Hi Rhana many thanks for sharing this with us, you are so gifted keep positive and keep the your art work coming.
Rhana Griffin:
Hey Robin! Lovely to hear from you :) I’ve really started to see an increase in my energy levels over the past week and I’m ecstatic that my trigger finger is finally starting to itch again!
John Robb
It’s going to be ok. I’m here for you.
Rhana Griffin:
:)
Adriana Glackin
Oh Rhana, I’ve always enjoyed your ramblings, and this one is no exception even though it is a tale so sad it makes my heart weep. I’m sorry to hear you’ve been through the ill health wringer :( You are so right to look at life as the learning journey and I thank you for sharing what you have learnt. Hugs to you always xxx
Rhana Griffin:
No need to weep Adriana, there are people in this world who are far far worse off than I am. Really, I’m one of the lucky ones and I just keep telling myself that every day. Thanks so much for reading, hugs straight back atcha xxx
Chatta
Hey Rhana, very inspirational story and gut wrenching at the same time. I love your positive and “it won’t beat me” attitude – don’t ever let that go. I’m sure at times it gets you down and you ask yourself why me but by the sounds of it you have 2 beautiful and very supportive hubby which is bloody awesome. As you alluded too there are so many others worse off and suffering and battling to stay alive just one more day or week or month – I wish we could click our fingers and fix all their ills. I am very new to the RB community and I have been blown away how close and supportive you all are and I have been made very welcome. Within days of joining I got an invite to go on a photo shoot – amazing. I’m just up the road from you at Burnie and my name is Brett – if you ever want company on a photo shoot or whereabouts of any waterfalls you see in my portfolio (have heaps still to add) just sing out. Keep your chin up and remember people do care :-) Cheers Brett
Rhana Griffin:
Hi Brett! Lovely to meet a local :) And I just love love LOVE waterfalls so don’t be surprised if I take you up on your offer ;)
Mieke Boynton
Dearest Rhana,
you’re a legend :) :) :)
I love that you are such a caring person – you’re such an inspiration! I’m giving you a virtual BIG HUG =D
Stay well, and thanks for sharing this with us. (It really wasn’t that long!!!)
Hugs,
Mieke :)
Rhana Griffin:
Ha! I think you are just being sweet when you say it wasn’t that long ;) But thankyou so much for taking the time to have a read Mieke… and I’ll take that hug thankyouverymuch! :))))
peter
Good on you for sharing your story Rhana – I think how we deal with adversity often defines us … and the way you’re dealing with Crohn’s is pretty inspirational. Your kids must be very proud of you …
Rhana Griffin:
Hey Pete, great to hear from you :)
I think how we deal with adversity often defines us …
So very very true, and a long held belief of mine. I really want to be a good example for my children, and I think it is because of them (and Sean of course) that I am able to stay so positive.
Robin King
((((((((((gentle hugs)))))))))
Rhana Griffin:
hehehe thats so sweet Robin :)))
billyboy
Hiya Gorgeous :-)
I`m still on vacation with the kids and we`re being swept along every day with busy stuff, so I`m not gonna read this till I get home next week… cause it`s you and I know it`s something I need to give my full attention to.
SO, I`m gonna fave it and soon as I get the coffe machine de-scaled I`m gonna get comfy in my Sanctuary, pop on me glasses and give it a read.
Don`t go anywhere in the meantime, yeah?
xo!!
Rhana Griffin:
So, I saw this back when you wrote it…. don’t think I didn’t, and the anticipation was killing me I have to say! Hope you had a wonderful vacation BB :)
Lori Peters
I am sorry to hear that you have Crohn’s disease. There are many cases here in the states. I keep seeing ads for new meds for the disease. I hope you find one that works and that research can find an answer soon. You have always been very fair and helpful to me and I appreciate that. My grandson has had and always will struggle to live with a heart defect. I know how these things affect people and their families. Take care.
Rhana Griffin:
Hi Lori, thanks so much for stopping by to have a read. I think that when we are touched by a serious illness, either in ourselves or our loved ones such as yourself with your grandson, we cannot fail to find ourselves changed by the experience. I have no doubt that with your love and support, your grandson will grow to be a wonderful person – despite his heart defect :)
billyboy
OK, so I haven’t de-scaled the machine yet, but I HAVE poured myself a beer and I sat down and let your story envelop me like it was the only entity on the planet…
And it’s kinda strange that earlier today, having got back form Montreal and found the need to clean house (and that means my Sanctuary natch :-), I came across the hand-written note you sent me with my first ever single-headed Tassie Devil. And I started thinking of you and so many sparkling bits of fairy dust sniggled through the creases of my grey matter. Right from the very start of my existance in Bubbleland, you were the shepherd. The one who set the pace, the one who made me feel I’d found a place where I could be comfortable being myself. And even now years down the line, when so many have come and gone in this place, you are still there and every bit (if not more) amazing as you were right at the start.
Your personal story, though one that will make us all understand your anguish and wish you the versy best, is not the issue here. What IS the issue is that being the amazing person you are, you have once again proved yourself the shepherd, this time on a massively important level. You’ve shown us that frame of mind through putting our condtion into context can turn our half empty glass into half full, and even show us how we can start to fill it further. You have put one of the most valuable lessons in life in our hands simply through your willingness to share your personal formula for embracing life and love to the limit.
Rhana, you will never cease to amaze me with your strength of character, and your whit. And though I realize you are blessed with a caring hubby and awesome and supportive kids… it is the people who are in your physical would who share their lives with you who are the lucky ones.
You inspire beyond belief, and knowing you is priceless.
xo
Rhana Griffin:
Having read this comment over yet again, I really don’t know that there is anything more important I can say to you here BB than what I said to you in my bubblemail. Love you bunches my friend xxxxx
Jen Wahl
Oh Rhana ((hugs)). You are such a brave, strong woman… one that many of us look up to and admire. Everything is going to be ok…and I am here for you, should you need me. I have tears in my eyes… I do wish I could give you a giant hug… the turn your face blue kind of hug xxxx Life is beautiful… and maybe because of your Chrohn’s… you get to experience in a way that some may never see or appreciate.
It’s such an honor to know you and call you friend. XO