Tag Archives: #health

Breaking the rules

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jellybelly

So this happened last week… I broke the rules. My “healthy eating” diet rules that is.

I had a crappy week – personally and professionally – and as Hump Day approached, I was feeling sorry for myself, staring at the giant 50 flavours of Jelly Belly jelly beans that had been gifted to me about 3 months ago in my office and thought, “Why the hell not?”. I should be proud that I held out from opening them for 3 months! But hey, I cracked and ate all of the “Berry Blue” flavour in one hit (you can see the missing jelly beans in the 2nd row).

Post-consumption, I felt guilty and proceeded to rope in my colleagues into my shame spiral by getting them to play the Jelly Belly game, where I would give them a jelly bean and they would have to guess the flavour. Guilt is better when you share it!

The next day after my jelly belly scandal, I felt fine. Totally fine! I was surprised, but acknowledged that I felt this good because 99.9% of the time I eat totally healthily to support my Crohn’s and my digestive system. What was a handful of processed sugar?

But just as I had opened the box of jelly beans, I too had opened the can of worms… and could not stop myself from making excuses to break all the rules from that day onwards:
Thursday = goodbye to all of the “crushed pineapple” jelly bean flavour.
Friday = goodbye to all of the “lemon drop” jelly bean flavour; cider after work (not meant to have alcohol), and crumbed prawns for dinner.
Sunday (this is where it got majorly out of control) = 2 soy lattes with sugar at brunch (I’m not supposed to have sugar, coffee or soy!), soy pork salad (not supposed to have raw food either!) at lunch, a piece of pear and custard tart (absolutely bloody delicious! But full of sugar, eggs and butter) and a nibble of a cheesecake slice (was making up for lost time on Saturday when I ate well, clearly!)

And by 3.30pm on Sunday, I actually thought my stomach was going to explode. For starters, it swelled like I was 4 months pregnant, was sore, and was gurgling something fierce. I may not have had immediate repercussions for breaking the diet rules, but definitely after a 5 day bender, it all caught up with me! I had hit threshold!

And I have been paying for it ever since, if you know what I mean…

Reflecting on the whole thing now, I realise that it didn’t take much to throw me over the edge – a bad week of managing my emotions and I lost the plot of what was important to me – my health. It also didn’t help that I was surrounding myself with the temptation of deliciously forbidden food, but also that once I had broken a rule, I convinced myself that since I had already done the damage, what was another rule broken? And another, and another….

And yes, it was all terribly delicious and mesmerising at the time, but even with only a week of crappy eating, my body feels “mweh” – I feel hungover in my guts and I have very low energy, which makes me only want to consume more sugar to bring up my mood and overall energy. So now I have to make up for it all and jump back on the wagon. It’s like I am a recovering junk food junkie. One little taste of sugar and I lose it!

“My name is Amber, and I’m a junk-aholic”…

So now I have upped my probiotics, am drinking lots of water, eating good protein in meals, and I need to get rid of that box of jelly beans – outta sight, outta mind!

The moral of the story – it’s ok to lose yourself every once in a while – it is nice to not ALWAYS be following so many rules to be in the perfect, healthy state all the time… but be kind and forgive yourself quickly when you do lose control and try to bring it back together as soon as you can… 5 days was long enough for me, and at least I am lucky enough that I am really aware of how much better I can feel, and that’s incentive enough for me to do the right thing for my health again.

Wish me luck! Xx

Calm before the storm

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Screw my last post about feeling calm about my operation day…we have lift off and I am freaking out! Actually, it’s more like sadness, an intense sadness… I woke up this morning and cried and mourned for the loss of my left labia today. The surgeon is going to remove the cavity from it which will involve an incision (and eventually a scar) of about 3-4 inches from the top of the labia to right underneath the vaginal opening.
And all of this dawned on me at 6.30am. I’ve known about this surgery for a couple of weeks now, but it’s like the realisation of what he was going to do, and the thought about how painful this surgery is going to be after the fact suddenly fell on me like a tonne of bricks. I feel utterly hopeless.
I’ve already imagined my confrontation with the surgeon today in the hospital, asking him to clarify EXACTLY what he is going to do, and whether he can do it another way! I’ve pictured me screaming at him “I DO NOT GIVE YOU MY CONSENT”, I’ve pictured myself ripping up that hospital document with the details of the surgery and storming off, and I’ve also imagined a version where I freak out at him and they sedate me and before I go into a ga-ga type of state, I beg my husband and my mum to “not let me go into the surgery”.
Ughhhhh. I feel like I shouldn’t have rushed this surgery now. I want to go back to work, (I’m surprisingly having so much fun there!) and the prospect of being off for a while to help the stitches heal and so I can walk properly is daunting. I also now have the massive guilts for not telling work that I had a procedure today. I should’ve really organised this surgery in the school holidays which are next month. It would’ve given me 2 weeks to recover, anxiety free. Surely I can arrange the new operation when I go in today? Can I do that? Can I negotiate a new surgery time on the day of my scheduled surgery? I’ve never done it before… I’m sure it is a hassle.
I’m going to go to a yoga class this morning. If I have the surgery today, it’ll be the last class I do for a while. I am going to make a decision about going into hospital AFTER that class. Maybe after some me time, some zen time, I will get some clarity for all of this. And hopefully, the storm will pass.

Chucking a sickie

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I have surgery booked tomorrow, and I am surprisingly calm about it… mind you, I have been waking up at 5.30am for the past 2 days and having wildly crazy dreams, but surely that’s just a coincidence? Or maybe it’s the fact that I will have tomorrow off from work and potentially Monday and Tuesday off as well… I haven’t told work that I am going in for surgery though, I am just going to fake a flu. Less questions, less dramas to deal with. I’ve just been given a leadership position at school this term upon my return after 3 months away, so I don’t want to start ringing any alarm bells about my situation again. And fortunately for me, a lady who shares my office has been really sick with the flu (but still has been coming into school!) and all week I’ve been dropping comments like “Oh no, I think you’re getting me sick too!” or “You should stay home, I’m on immunosuppressants and if I get sick, it’ll be twice as bad!”…

I know this all sounds incredibly dishonest, and usually I advocate for the “you are the first priority – look after your health!” side regardless of what’s happening in your life, but I just want to get in and out of surgery and pray that I recover super quick so I can get back to normal.
In reality, I will be staying the night at the hospital to deal with the pain, all weekend I will be sleeping and dealing with the pain, and when Monday comes around, I probably still will not be able to walk. Then I’ll have to come up with some excuse around work about why I am hobbling around… it’s actually going to be really fucked now that I properly look at it… I probably should’ve told them I was going in for surgery.

It’s shocking at what lengths people hide their illness, and then on the other end of the spectrum, there are people who are constantly whinging about how sick they are and how horrid their life is dealing with it. I don’t know which one is the right way, because they both sound like TERRIBLE ways of dealing with your health. But all I know is which side of the spectrum I am on. Hahah, I mean, I am “chucking a sickie” from work when I am actually sick! But my “sickie” is too hide what I am really sick from! Bloody bonkers!

So I guess, wish me luck! And wish me a speedy recovery because I need some help hiding all this! xx

Fitness freak

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After sharing my recent bath time story to my surgeon on Tuesday, I am happy to say that he was impressed that my body is clearing itself. YAY!

Bad news is, he still wants to operate next week. BOO!

Basically what’s happened is where my first abscess was earlier this year, well, the cavity that held the abscess is still there. It has left a large, hardened, empty mass under my skin that is the size of a 20 cent piece. Anyway, that cavity needs to be removed now. The risk is that if it stays there, it could potentially fill up again to form a new abscess. Alternatively, I leave it, but deal with the fact that I have this bizarre growth that makes everything look asymmetrical down there. So I agreed with him about having it removed.
To be honest, the surgery didn’t need to be rushed anytime soon, but I was thinking about all my wonderful friends’ weddings coming up in the next couple of months, and I figure, the sooner I do the surgery, the sooner I’ll be up and running. Get it over and done with!
But then this week I noticed something – in my yoga class, I was holding poses longer, even trying some of the harder ones… I felt STRONGER… and then tonight at my basketball game, I played a whole 40 minute game without taking a break and felt good and wasn’t out of breath…I felt FITTER… and then as I was driving home from the game, it dawned on me that by going into surgery next week, I will be out of action for 3-4 weeks which means that I won’t feel this amazing strength in my body for another long while.
Now I know the positive is that the sooner I get the surgery done and out of the way, the better. I know that it’ll give me peace of mind, considering my emotional state around my health has been bloody all over the place! And it’ll mean I will be bouncing around and able to celebrate these amazing occasions coming up in the second half of the year.
But really, I just feel really bummed out about it all. This is the first time THIS YEAR that I have actually felt my body feel strong and fit. I forgot how good it felt to feel physically capable! It’s been so long since I’ve felt this good in my body, and I only noticed it this week when I was doing exercise. It feels so good to finally not tire out so easily, to not need to sit, or nap, or take it easy, or walk slowly….And now, I am going to lose that again because I have to go back to surgery.
I know my body will bounce back again, just like it did to get back to this point. The doctor says 4 weeks of no exercise, but it’s really more like 6 weeks before I can actually give exercise a proper try, so it’s really not that long to wait to be getting fit and strong again. And I know that the sooner I do this, the less at risk I am of something potentially going wrong again with the Crohn’s… but AAAARRRGGGGGHHHHHHHHHHHHHH!!!
I’m really tired of feeling good and then having to deal with not feeling good again. It’s really shit. It’s a bloody marathon having to keep up with all the ups and downs of chronic illness! It’s just one hurdle after another! (Are you loving my fitness puns, eh? ehhh??)
I know I’ll get through it, I always do… it just feels a little tougher when you can FEEL the difference in your body. But I guess I am blessed that I CAN feel this good, even with Crohn’s Disease. And for a long time, I did feel this good before because I was in remission. So it’s not like I am back at square one. It’s just fresher in my mind that I am going to miss feeling this good again for a while. But hey, there are worse things in the world than being immobile for a few weeks waiting for my body to recover! So if you have any suggestions of good TV viewing or book reading, let me know, as I will be residing on my couch for the next couple of weeks taking it really easy xx

Have vegans been right all along?

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A doctor I saw recently was disapproving of the “restrictive Paleo” diet that I have adopted – you know, the one that I am allergic to EVERYTHING and basically eat Paleo style minus the butter (this is a dairy! COME ON PALEO PEEPS!) eggs (ducks eggs can be used instead), fruit (I can have avocado, coconut, lemon, lime and berries though) and nuts. So yeah, this is the “restrictive Paleo” diet I am on.

Anyway, my doctor said that I should be avoiding animal products – that means no meat or eggs… I was like, WHAT??!!? I am protein deficient so shouldn’t these types of protein be good for me? And besides, since taking on this diet, I have been feeling super awesome (refer to my ‘Improvement’ post). And then it dawned on me (again)… I have WAY too much information, too many doctors, and now they are giving me conflicting advice… what the hell am I meant to do now? So I consulted my oracle – Google.

I typed in “meat and Crohn’s” and all these links about meat being inflammatory came up. I then remembered that a friend’s father was diagnosed with bowel cancer a couple of years ago and had to become vegetarian as a result. But I thought that was because meat can be difficult to digest? You know, when you eat a big steak or ribs and sometimes get the meat sweats afterwards (or is this just me)? So I start doing some more research and find out that it’s not the physical difficulty in breaking down the meat, but that red meat is high in fat and that is not good for your digestive system.

FINDING #1: ANIMAL PRODUCTS AIN’T GOOD FOR YOUR GUTS
According to Dr. Greger from NutritionFacts.org, a single meal of animal products leads to a flood of endotoxins (bad stuff from bacteria) which causes inflammation (our immune systems’ response to bad stuff). He has a set of awesome videos to help you understand ailments better, plus his voice overs are super entertaining!
Have a look for yourself at:
http://nutritionfacts.org/2012/09/20/why-meat-causes-inflammation/

Ok, but like any good history teacher, I need more than just one source to prove this theory…

FINDING #2: RED MEAT IS LINKED TO CANCER
Oh shit! The Cancer Council even says that diets high in red meat are “associated” with bowel cancer. Not good if your bowel/digestive system is already compromised with a GI disease! To be fair, they used the word “associated” which means they don’t want to make any conclusive statements. But they do indicate that out of the 21 meals you eat a week (3×7…maths check!), you should only have 100g of red meat 3 to 4 times… 3 TO 4 TIMES? OUT OF 21??!?!?!?!?
And they also say stay away from processed meats. No bacon. Damnnnnnn
Check it out: http://www.cancercouncil.com.au/21639/cancer-information/cancer-risk-and-prevention/healthy-weight-diet-and-exercise/meat-and-cancer/

Ok, but as a researcher, despite these sites that are sound authorities/experts on health, they MAY be bias… what else can I find?

FINDING #3: MEAT AND DAIRY TRIGGER INFLAMMATORY BOWEL DISEASE
A Harvard study published in a medical journal has found that animal protein increases the quantity of microbes in the gut that can cause inflammatory bowel disease within 2 days of consumption… COME ON! WTF?!?!
Ugh… there are a few journals at ‘The American Journal of Gastroenterology’ and you can read more from http://www.ncbi.nlm.nih.gov/pubmed/24336217 or the cliffsnotes version of it from http://www.care2.com/greenliving/meat-and-dairy-consumption-rapidly-alter-gut-bacteria-cause-inflammation.html

I’m slowly slipping into DENIAL land again… I AM NOT READY FOR THIS! I have had conversations with my husband that if one of us became vegetarian it would be grounds for divorce! Seriously, how can you NOT enjoy a meal with meat? No offence to all the vegetarians out there… But this is another level, this is VEGANISM! No meat, fish, honey, eggs… my life is flashing before my eyes…

I know I’ve said before to give ANYTHING a go to help yourself and your health if you can, but I think becoming a vegan is my absolute threshold of what I can do. I’m going to have to give this a LOT more thought and allow this to be LITERALLY digested. Let me know your thoughts – have you become a vegan for medical reasons? Or have you limited animal products in your diet? Has it helped?

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Fistulising Crohn’s Disease treatments

A good read about fistulising Crohn’s Disease and the treatment methods available including Infliximab, Humira and antibiotics. YAY winning combination!

However, a bit upset with the comment that perianal fistulae are a “disabling complication” of Crohn’s disease – true, it is… don’t want to be reminded of it… but then it mentions that this leads to a reduced quality of life… BOOOOOOOO!!!!!!!!!!!

Fuck you Crohn’s. Not going to let you reduce my quality of life!

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Stimulation that you don’t want…

Caffeine isn’t so great for your guts if you’ve got Crohn’s Disease or any other inflammatory bowel disease… gives you the liquoops and makes things feel a little too intense in your midsection. This article outlines some issues associated with caffeine, especially causing a laxative effect and being quite acidic – doesn’t make your guts feel too good. What I found interesting is that caffeine increases your stress hormone levels which actually divert blood from your digestive system! Yikes!

For years I had noticed that caffeine and I didn’t get along – if I had black tea or a coffee, it would actually cause a red flushing of my face, which in Chinese medicine is called Liver Yang and relates to your liver function (under a lot of pressure from all my meds anyway), a leaky gut or digestive issue – BINGO! Ticking all boxes here! Caffeine would also stimulate me – and not in that “I-am-functioning-at-the speed-of-light” type of stimulation that gets you through the day and makes you uber efficient, but it would make me have the runs… Never a good option for someone with Crohn’s who already has pooping issues! Plus, people with bowel problems should avoid drinking anything with a diuretic effect at all costs, I mean, we are already not absorbing vitamins and other vital elements through our guts, do we want to add dehydration to the mix?

I’ve found this amazingly delicious herbal tea that makes you feel fabulous and gives you that wonderful warm fuzzy feeling inside called Husk that is caffeine free and organic. You can buy it at David Jones Food Hall in the City, at Thomas Dux in Paddington or online at http://www.husk.com.au (although, it’s more expensive online…go figure!). My favourite flavours are found in the following combinations:

1) Digest (Yes! They have designed a combo to make your guts feel great!): peppermint, licorice root and chamomile flowers
2) Revive (Yes! They have designed a combo to make me feel refreshed!): tea tree, lemon myrtle, lemongrass and apple.
3) Harmony (Yes! They have designed a combo to make me feel balanced!): cinnamon, lemon balm, rosehip, apples, cloves, ginger and cardamon.

You can also find their other combos called Calma and Dream which are also beautiful, but those above are my top 3 picks. A great warm drink alternative to coffee or black tea that is good for you. Make the transition slowly – I know stepping away from your cuppa coffee or tea fix is a challenge! If you’re feeling that caffeine is a bit too much for your guts to handle, then Husk may be your answer.

And in the meantime, if you too are experiencing red flushing in your face after consuming something that your body is not happy with, some things that can help reduce this is avoiding those trigger foods. Keep a food diary and keep track of what your body reacts to. Also, upping your water intake (I drink about 3 litres of water a day – the first week of increasing your water you will pee like a dog marking it’s territory every 15 seconds! But then slowly your body will get used to it and the frequency will decrease) will help eliminate any toxins in the liver. Eating ‘cooling’ foods such as cucumbers and pears will help as well. Check out this website for more details:
http://www.askanaturopath.com/faqs/facial-flushing/p/471

And of course, a visit to a Chinese herbalist or acupuncturist will do wonders as well. Enjoy keeping warm the RIGHT WAY this winter, not through face flushing or drinking caffeinated drinks xx

However, there is a boat-load of common knowledge that may be convincing enough for some to avoid caffeine if they are living with Crohn’s Disease. For example, it is a well known fact that caffeine produces a laxative effect, so if diarrhea is already a problem, this could worsen existing symptoms. Caffeine also elevates stress hormones and causes blood to be diverted from the stomach, which can worsen digestion. Caffeine is also highly acidic, and as a result, it may create stomach upset. And finally, caffeine acts as a diuretic which can lead to dehydration. Staying hydrated can be particularly important if you are living with Crohn’s Disease. – See more at: http://www.healthcentral.com/ibd/c/17824/42090/crohn-caffeine/#sthash.ubFrCYMK.dpuf
However, there is a boat-load of common knowledge that may be convincing enough for some to avoid caffeine if they are living with Crohn’s Disease. For example, it is a well known fact that caffeine produces a laxative effect, so if diarrhea is already a problem, this could worsen existing symptoms. Caffeine also elevates stress hormones and causes blood to be diverted from the stomach, which can worsen digestion. Caffeine is also highly acidic, and as a result, it may create stomach upset. And finally, caffeine acts as a diuretic which can lead to dehydration. Staying hydrated can be particularly important if you are living with Crohn’s Disease. – See more at: http://www.healthcentral.com/ibd/c/17824/42090/crohn-caffeine/#sthash.ubFrCYMK.dpuf
However, there is a boat-load of common knowledge that may be convincing enough for some to avoid caffeine if they are living with Crohn’s Disease. For example, it is a well known fact that caffeine produces a laxative effect, so if diarrhea is already a problem, this could worsen existing symptoms. Caffeine also elevates stress hormones and causes blood to be diverted from the stomach, which can worsen digestion. Caffeine is also highly acidic, and as a result, it may create stomach upset. And finally, caffeine acts as a diuretic which can lead to dehydration. Staying hydrated can be particularly important if you are living with Crohn’s Disease. – See more at: http://www.healthcentral.com/ibd/c/17824/42090/crohn-caffeine/#sthash.ubFrCYMK.dpuf
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The embarrassment… Women’s Health Magazine

A friend of a friend who used to work for Women’s Health magazine approached me at the beginning of 2013 and asked whether she could write about my Crohn’s story. She wanted to use me because I was stable in remission, even CURED I had thought. I had bragged to a few people that my Crohn’s no longer existed within me – I believed this because I had no symptoms, I felt good (so good, I even stopped taking my medication), colonoscopies couldn’t find any Crohn’s in my body, blood tests looked positive, I had met some cool people in Bali who taught me how to heal myself with healthy food and water and how to use positive language to say “I HAD Crohn’s” (past tense), and was finally so convinced that I was so in tune with my body that if something did start to flare, I would know about it immediately and would be able to manage it.

So I agreed to do this article, and it was the first time I had ever openly talked about having Crohn’s. Writing the history of how it all began, my symptoms, my treatments and how far I had come was a huge breaking of the barrier I had put up to protect myself from the embarrassment of having a disease and feeling abnormal to begin with! While I typed up my story before hitting ‘send’ I began to sob uncontrollably – it was the release I had needed after years of keeping it all a secret. Don’t get me wrong, friends and family knew I had Crohn’s, but they didn’t know how much I actually suffered with it. They didn’t know the gory details of my symptoms, didn’t know how many operations I had, how I used to be in so much pain after a bowel movement… I hid it from everyone. My whole teenage life, my parents used to label me as a “horrible morning person” – I’d come down into the kitchen, scowling, not wanting to talk to anyone, moving away from them if they came over to touch or kiss me (I am a super affectionate person usually), snapping if someone was trying to talk to me – what they didn’t know is that the reason I behaved this way in the morning was because I was in such excruciating pain after having a bowel movement that I could barely stand, let alone sit, and I was trying so hard to hold myself together that even talking or smiling was a mission. And this went on for years. Even when I worked at a school in Macau, my colleagues thought it was cute that I brought a really soft pillow from home to sit on to help ‘prop’ me up at my desk. The truth was, I was in so much pain in the mornings that I couldn’t sit properly – I would have to have something soft to cushion my butt, or I would sit to the side, or sit with my leg crossed underneath me.

I’m not sure exactly why I didn’t tell people that I was suffering all that time – a combination of denial, not wanting people’s pity, not wanting to burden people or worry them, not wanting to deal with it by saying out loud that it hurt me – but it was tightly under wraps. And by the time this article was being created and I was being asked about my story, I felt like it was time to unveil the truth after 13 years of having Crohn’s. I wanted to help others who were suffering by finally sharing my story. I was happy for strangers to know what I was going through. But I still wasn’t comfortable with all my friends and family knowing that I had contributed to the article, so I only told a select few about it once I knew it was officially going ahead.

And the day I had finished writing my story and answering all the journalist’s questions via email, I wanted the first person to read it be my fiance (now hubby). But I told him he could only read it when I was out of the room (I was terrified to watch him read it!), so I went and had a shower, and started to cry. I cried and cried, releasing it all out of my system – nervous that he may be grossed out by me now, embarrassed that I had shared so much, and ashamed for being sick and that I may one day be a burden on him. And he read my story AND heard me crying in the bathroom, and before I knew it, he came into the shower with me and hugged me, and told me that it was all good. And it was – knowing that he accepted me for all my flaws AND my Crohn’s was the most wonderful feeling in the world, and it gave me strength and solidified my decision to contribute my Crohn’s story to the magazine, and essentially, the world.

And then 7 months later, it was edited and published in the November issue! I got to do an awesome photoshoot for it and feel like a model! It was a great day. I actually felt PROUD that I had “had” Crohn’s because it allowed me to share my story. And I was written about because I was a “success story”… I mean, the by-line to my story was my quote “There are no traces of it [Crohn’s] in my body now, which is extremely rare”…Pffttt… Look at how cocky I was!

And slowly but surely, people found the article. To be honest, I didn’t think people I knew would buy Women’s Health Magazine…I mean, surely, all of my girlfriends are still reading Cosmo? But nope, I was receiving phonecalls, emails and texts of people congratulating me and commenting that they had no idea what I was going through. I felt relief. People still loved me, and weren’t going to shun me. I can’t even explain the sensation – I can’t even explain why I was scared that I thought people wouldn’t want anything to do with me if they found out about my Crohn’s. Looking back now I realise how irrational that was, and how much EXTRA suffering I had gone through by keeping it a secret, and then having this build up of anxiety that if people found out that they would no longer accept me. But I guess that was my journey with processing my life with my Crohn’s.

So, why the embarrassment? After feeling so much pride, and then relief after the article was published… well… I got sick again. I not only had to deal with the physical and emotional trauma of having a relapse, but I felt this incredible sense of embarrassment and shame. I had finally shared my secret to the world under the pretense that I was speaking in hindsight, from a healed place, and then I had a relapse! What a fool I must have looked to everyone! Here I was telling the world, “Hey! I’m cured! Look at all the amazing things I did to get to this very rare circumstance of not having Crohn’s again! And I’m getting better everyday!” – Talk about commentator’s curse!

When I talk to family and friends about my embarrassment, they tell me not to feel that way, because it was all true for me at that time. They tell me that it gives other Crohn’s sufferers hope or that it helped extinguish the taboo factor of talking about it to the world. They remind me that through this article, I developed my own awareness of my condition, and that it was a necessary part of my own healing… and as much as I know what they are saying is true… I STILL cannot shake the feeling of being embarrassed by it all. It’s just…ugh…so annoying! I mean COME ON! I was just featured in a magazine about being HEALED of my Crohn’s and then 3 months later I am SICK with Crohn’s! It couldn’t be a more eye rolling moment! SERIOUSLY!

*Sigh*… Looking at the positives of this whole situation, I am now very comfortable about sharing my story of Crohn’s (obviously) and don’t feel like I need to hide symptoms from people – I mean, I’m not sharing EVERY detail, but if I’m having a bad day, or feel sick, or need help with something, or am in pain, I can let people know without feeling bad about it. So that’s a great thing. I don’t have to suffer in silence anymore. And the more I open up about my condition, I think this awareness and acknowledgement helps with my healing process.

So hopefully in time, I will be able to reconcile this feeling of embarrassment about publicising my Crohn’s “success” story in Women’s Health Magazine and then getting sick again… hopefully soon. Am in the process of creating a new success story for myself by following all my treatments and staying positive. It may not be a definitive cure, but it’s definitely getting me back on the right path to dealing and healing with Crohn’s.

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Learning what Chronic illness is, and what NOT to say about it…

Ohmigod. I just learnt what the term “chronic illness” ACTUALLY means… I know this might seem like a bit of a “DUH?!” moment to some… some of you who know me may even be referring to my statement as another “blonde moment”… but I always thought that it meant someone who was REALLY, badly sick… I didn’t realise it referred to the LONGEVITY of the illness.

Thanks to betterhealth.vic.gov.au, I’ve learnt this:

Chronic illness means the illness is long term. A chronic illness can be stressful and may change the way a person lives and how they relate to others. 

Awwwww shit! I’ve got a chronic illness! It’s long term! I don’t get sick and then it goes away, I mean yes, there are periods of remission, but it’s always there! Lurking in the background, being wonderful on some days and punishing me on other days.

It totally makes sense that I was now having very strange conversations with my superior at work, who I thought was just struggling through the language barrier (and thick accent!) when I was telling her that I had Crohn’s Disease. She had told me that her nephew suffered from this too, and that it’s called “Chronic disease”… I was like, “No, it’s pronounced Crohn’s Disease”… and then we continued correcting each other. But now I realise we were both right, despite me having a giggle behind her back about her telling ME what I had!

Anyway, a friend of mine posted this link on Facebook – about what NOT to say to someone with a Chronic illness, or what they refer to as an “invisible disease”. Basically an invisible disease is the one that doesn’t give you maybe any outward symptoms, but your body or mind inside is doing fucked up things to itself. And it also refers to the fact that you may LOOK fine most of the time, so people are like “you don’t look sick”… yeah, well my liver toxicity is high from all the medication I’m on, my urine is pink as a side effect, my immune system is compromised from the immunosuppressant I am on, my tissue is eating itself because they think its bad causing abscesses, I’ve got setons that are draining, I take a million pills, I have to research menus online to find out what I can eat before going to a dinner party… the list goes on…

Don’t get me wrong, I know that the people around you who don’t understand chronic illness (who is basically ANYONE who does NOT have a chronic illness) such as family and friends are just doing their best to help you. It comes from a wonderful place of caring and trying to take away the pain and suffering by being in DENIAL for you (“you’re just having a bad day”), and so don’t be too unforgiving towards them! Unfortunately, they may know a lot about the disease/illness, and know how you suffer, but no one ACTUALLY understands what it’s like to live through, unless you have the same chronic illness too. This “thing” that just won’t go away, that you have to deal with…

To my beautiful support group around me, thank you for being so amazing! I must say, most of the 15 phrases listed in the link I haven’t heard from them, but from other people who maybe just meet me… It’s a pretty funny read, and may help others know what to say next time you come across someone who also suffers from chronic illness (my new favourite phrase).

Improvement!

Standard

So it’s been over 6 weeks since I’ve started my new diet plan and have introduced many vitamins and supplements to support my system. This has all happened under the care of Dr. Yuwen Lee at Pymble Grove Health Centre (http://pymblegrove.com/practitioners/dr-yuwen-lee) who I was introduced to me by my mother, who was seeing her for her thyroid issues. My mum, a warrior for good health and preempting anything gnarly that might happen to me due to my Crohn’s, booked an appointment for me in September last year for February this year (so 6 months in advance, so call Dr. Lee now to make your consultation time for next year!) because she swore that Dr. Lee was absolutely fabulous and that I should see her to get some help. I didn’t imagine that I would be seeing her a week BEFORE my relapse and return to hospital, and that this was the PERFECT marker for me to compare the before and after effects of her guidance and treatment.

When I first went to see her, I was more concerned about getting to her, as she is almost an hour’s drive from my house! What a hassle I was thinking, but now, she is SO worth the drive! She is very friendly and before I knew it I was telling her EVERYTHING about my life. Prompted by some interesting questions, such as: “Would you describe yourself as a patient person?”, “Do you dream vividly?”, “What foods do you crave?”, I divulged in that 1.5 hour session my whole mental and physical functioning, including my moods and reactions to certain scenarios… which I couldn’t believe was relevant… but soon found out how it was ALL connected…
She weighed me, did a blood text, did a pinch (fat) test, touched my skin and hair texture… it was VERY comprehensive and I felt like I could trust her and that this was all good value to the small fortune I was paying her for the appointment.

Anyway, every 6 weeks I’ve gone to see her to check in on how things are working, how I am maintaining my health, managing which supplements to take, getting B12 injections, and my most recent visit to her on Wednesday proved that things are actually improving, just through a change in diet and taking supplements!
She went through her questions again and then highlighted how my responses were different now to what they were initially 4 months ago – I am no longer constipated, no bloating, no wind (seriously, I hardly EVER fart now – yes, girls do fart – and I notice it when my husband farts, I’m like “Hey! That wasn’t me, I haven’t farted all day…actually, didn’t even fart yesterday…or the day before…”), my energy levels are amazing, I feel lighter but stronger, my skin is glowing, my hair feels softer and I am not losing it in clumps, I feel alert, I can concentrate for longer periods of time, I’ve lost over a kilo of bad fat but have built up good fat (which means my body is now absorbing protein) and I am more patient and calm… seriously! It’s amazing! Just through diet and taking supplements where I have deficiencies has made ALL this difference. And I know this because the western medicine I am also on has been the same for the last 9 years and this is the NEW thing I introduced to my healing regime and I am feeling a difference, I am feeling the best I have felt in a super long time! I think it’s pretty incredible, and for someone like me who likes to feel in control (especially with my Crohn’s), knowing that I have contributed to this improvement of my health is just such a great feeling and achievement.

In all honesty, I had to change my diet enormously, which was sad and challenging at first to eliminate everything I loved eating… and I am on a LOT of supplements (recall my pillbox blog!) which can be annoying to take on top of my medication, but I’m taking them. Just to list a few of them: Zinc, Vitamin B, Vitamin E, Vitamin D, Pro-8 200 and Nilstat (probiotics), digestive enzymes, omega-3, cod liver capsules, and a bunch of other things for gut healing, liver support, biochemical imbalance and antioxidants. … just doing what I need to do, to feel and get better. And it’s working! That stage of feeling like I need to do ANYTHING and EVERYTHING to recover just pushed me into that focused zone of healing (and at times, sacrificing!) and now I am reaping the rewards!

To be fair, there are still symptoms of my Crohn’s that I would like to be different (I can’t claim that I’ve cured EVERYTHING), and I am not saying that diet and supplements are the ONLY way to heal Crohn’s, but it definitely helps SUPPORT the work that you are ALREADY doing to stay in remission. And when you feel this good – lighter, stronger, more energy, happier, calmer- you kinda don’t wanna go back to the way things were before, when you could eat whatever you wanted. We’ve all known for some time that eating healthier and taking the right vitamins for your body is good for our health in the long run, so actually putting that knowledge into action is really not THAT big of a mission to adopt. If I can do it, you can do it. I mean, I still crave pizzas (I’m not perfect! I’m not a fully fledged “eat right for your body” guru yet!)…I freakin’ love pizza and miss eating it…but hey…Give a new diet and vitamins a TRY at least! See how good you can feel too…you’ll love the difference, so it’s all worth it in the end xx