Being chronically ill at Christmas

One thing that I have been trying to convey through this blog but I don't know how successful I have been is how, for me, pushing myself does not work. I've relearnt that again recently - I've pretty much been wrecked since I got back from Jakarta. More travel and Christmas parties and all the things I want to do have not helped since then.

I was doing some blog reading the other day, and came across a great post by Michelle over at Endohope. While reading it I found myself nodding along - I've heard all statements listed. I've included some the post (with her permission) since I think she explains it so well:

"Pushing myself at this time of year almost always makes me miserable, particularly when when my body is screaming: REST, PLEASE REST. I often find myself teetering on the line of feeling well and spiraling out of control from doing too much... ...Before we were ill we were often taught to push on through difficulty, that as long as we worked hard or kept going everything would be okay. The opposite is true for chronic illness.

I often hear the same platitudes from people at this time of year also. As those who aren’t sick try to persuade me to do more so I feel better. Ideas that actually make things worse. For example:
“When you come out, you’ll start to feel better”
“Have some coffee, then you won’t feel as tired"
“Have a drink and you’ll forget about it"
“Oh you have to come, I’m sure you can find a way”

They are only trying to help, but it’s very difficult to explain that my body doesn’t work like their body. There isn’t a quick solution to the way that my body has betrayed me. The idea of excess is a great metaphor for this. Having a bit too much to drink feels wonderful in the short term, but leads to a longer period of time spent feeling unwell.

Life with a chronic illness means you have to be very measured and extremely careful with how you manage your body. You don’t spring back as easily as someone who is well. A bad decision can lead to us feeling extremely unpleasant for a week or more. I know from experience that pushing myself particularly hard has lead to months of ill-health in the past, a few weeks of excess or over-exertion that led to months of careful untangling and unravelling from the results of pain and fatigue."

Merry Christmas!

My Christmas wish was for a day over 40 degrees.

I got it!

Hope your Christmas is just swell.

Say it with flowers

When I found this dress I couldn't believe my luck. What's not to love about a dress that is all colours of the rainbow and comfortable silk to boot? I plan on wearing it to many a festive occasion this summer.

Dress: vintage, Fash & Treasure

Bag: op shop

Musings {20-12-12}

Today my endo story was featured over at Shireen's blog - Endometriosis: my life with you. I've mentioned her before - her blog was one of the first endo blogs I found and I really love her style and writing. She writes all about her experience with endometriosis, particularly it leading to her having to quit working in the past year because of the severity of it. It's well worth the visit.

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Recent interesting links:

what anxiety feels like (for me)

(I could've written the first three paragraphs)

7 signs you're growing up too fast

...or why us 20-somethings should stop complaining that we are old and comparing ourselves to each other.

the link between pain and depression

just shut up and listen: how to cope with someone else's depression

You will never be able to lead someone out of the dark tunnel, all you can do is stay in the tunnel with them until they feel strong enough to lead themselves out.

(some of these links were taken from Shireen's Newsround posts because I thought they were just so important to share, particularly the last one)

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I lowered my Krill oil dose back to 300mg from 1000mg daily in the past week and I've definitely noticed more pain and fatigue (it took me a few days to realise that might be the problem), so I'm going to up the dose again to 1000mg. I'm looking at bulk buying websites since it's $33 for a month's supply (cheapest I've found it) at my local heatlhfood shop, but I don't know about buying supplements online. Does anyone recommend Krill Doctor? They seem to be the cheapest around.

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Tomorrow's apocalypse has brought to my attention that some people have not seen this youtube clip. If you haven't seen it, watch it now, if you have, watch it anyway. [Language warning.]

Anyway, I am le tired. So ciao.

A new plan

via

I had an appointment with my new gyne last week. It was very encouraging. While he still doesn't have the best bedside manner, he seems much more open, receptive and clued in than my last doctor. Also, we have a new plan!

So the plan for the next few months is:

1) Get the Mirena removed.

Because of my history of contraceptive pill-induced depression and mood problems, my new gyne thinks that the Mirena could be part of the reason I've had marked depression and anxiety since my diagnosis/Mirena insertion. I can't tell you how happy I was to hear that after my last doctor completely dismissed those symptoms. It's nice to have a doctor who is open and receptive.

Anyway, it might not be all of the problem, but I know within myself that I feel different when I'm on "fake" hormones and I'd like to try and see what I'm like without it. If it turns out that the Mirena makes no difference we'll think about it for future treatment (since it is quite effective), but if not then that solves the mood problem!

For those who are looking into Mirena as a treatment - if you deal with the Pill quite well, I'd give it a try. After 9 months, most of the annoying symptoms (breast tenderness, weight gain, spotting) I've had have settled out to levels that I can deal with apart from the mood problem, and I do think it has reduced the amount of pain I have been in, if only by stopping my periods altogether. There are a lot of horror stories out there, but you could just be the person that it works wonders for, and it doesn't hurt to try. (Apart from the slight risk of Pelvic Inflammatory Disease).

2) Try an anti-inflammatory diet (through ProjectEndo)

When I saw this opportunity to have a nutritionist work out my diet for free, I had to jump on it. Some women have had great results from changing their diet and lifestyle to control their endo symptoms, so I figure, what's the harm in trying! I'll keep you updated on my progress.

I have already started introducing some elements of the diet into my regular eating so I don't shock my body too much (mmmm, kale) but I'm looking forward to seeing how it goes!

3) Go on a non-hormonal medication to lighten my periods

Since the Mirena has actually stopped my periods for the time-being (well, the last six weeks at least), I will actually be a little sad to see it go. However, all is not lost. Apparently I'll be put on a non-hormonal medication that I'll take through days 1-5 of my cycle to lighten my periods. I'm going to make sure I do some more research before I agree to that, but I'll have to call up my gyne to find out what it is first... (I didn't quite catch it when he said it...)

4) Surgery (absolute last resort).

If my symptoms come back again or do not improve, we are going to talk about another surgery. I am very hesitant to do this because it is so extreme, and I don't think my symptoms merit it at the moment (unless it took away the fatigue, then it would be completely worth it!) but seeing as my new gyne could do an excision surgery, it could be more successful than my previous diathermy.

Dress ups: My childhood hero

For a bit of fun I thought I'd showcase some of the costumes I have created this year.

For my birthday this year I had a "childhood hero" themed party. To be truthful, this was wholly because I had wanted to dress up as Ms. Frizzle for a loooong time, and I figured that since it was my birthday I get to set the rules. Ms. Frizzle and the Magic School Bus series of books were one of the first things that fostered my interest in science and are one of the reasons that I decided to pursue a career in science today. I've always wanted to be a science teacher just like her and I wouldn't be surprised if watching all those outfits were to blame for my slightly eccentric style at times.

Such style! via xoJane

Scorpion leggings: The Sock Shop Melbourne (Melbournians, check it out - I get all my best stockings from there) - just checked again and it looks like they have closed down on November 30th. Oh no!

Dress: made with love by me out of a $5 op-shop dress and various dinosaur fabric that I collected, cut out and ironed on

Old-school Sedimentary Rocks textbook: cheers to an old work supervisor

Belt: Witchery

(My housemates are Alfalfa from The Little Rascals and Fozzie Bear from the Muppets)

Heather's story

Today I welcome Heather to my blog. She is 25, lives in Phoenix, Arizonia with her husband and was also recently diagnosed with endometriosis. She blogs over at Hello Endo! about her experience in an easy-to-read and entertaining style, so check her out. You could learn a lot! Thanks for sharing Heather! It's important to share our experiences to make sure this disease gets the attention it deserves and I'm so glad that there are so many open and honest women around sharing their stories.

Heather has featured my story and some other women's stories on her blog, so head over here to check them out.

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Let me start by saying that I have always had VERY painful periods. Like most other Endo Sisters who have been kind to share their story, I thought this was normal. I would spend the first couple days of my period in so much pain, it was insane. I can remember as far back as my freshman year in high school (on a half day of school) and watching the clock, just waiting for the minute that I could go home and crawl into bed. There have been days that I had cramps so terrible, I had to miss school or work.

Now you may feel that this is long, but this is important to me to spread my story. I want other women, whether diagnosed or not, to know that we are not alone. Please continue to read.
Just four months ago, I began to have extremely painful sex. I went to the emergency room a couple of nights later, because the pain would not stop. The E.R. doctor gave me a pelvic exam, tested me for STD’s and yeast infections (and accused my husband and I of not being committed). When all of the tests came back normal, she gave me a prescription to clear up a yeast infection she said probably didn’t show up on the test. I was then discharged.

A week later, I was still having the same symptoms, along with added back pain, pelvic pain, bloating and fatigue. So, I went to an urgent care facility, since my primary doctor was booked. I paid my insurance co-pay, was taken back to an empty room, met the doctor and gave my symptoms. I was not treated at all, I was told to go follow up with my primary doctor or go to the E.R. again. You can only imagine my frustration since I had just paid my insurance co-pay and didn’t get help.

So, I went to my primary doctor (P.D.) two days later, and told them my symptoms. I was unable to see my actual doctor but got in with a P.A. I was scheduled for an ultrasound. The first ultrasound showed that I had an ovarian cyst, so I scheduled an appointment with my gynecologist. When I arrived for the appointment, my US results were not faxed to the office and I had to have another US. This time, nothing was seen on the monitor. So the gyno said that most likely the cyst had ruptured and sent me home. Keep in mind that at this point I am in so much pain that I have been missing work and not getting out of bed. I was told that I would be fine in a few days.

Fast forward to another appointment with my P.D. (my real doctor this time) and she orders a CT, but tells me she thinks I have endometriosis. I had never heard of endo before this point, but she said she was going to run more tests but wanted me to go to my gyno again. I was also referred to a urologist.
At the urologist, I had to come back three times one of which for a cystoscopy – not fun. By this point, I have been to the E.R. twice, urgent care, and almost 10 office visits. I have been diagnosed with a UTI, yeast infection, ovarian cysts, and kidney stones. All were misdiagnosed. I was not able to work due to the pain and symptoms, spending countless money on deductibles, co-pays, and useless prescriptions were weighing on my bank account. At the time of the cystoscopy, I was diagnosed with PFD and interstitial cystitis. Still have not had any treatment for either, and have actually been told I may have been misdiagnosed… again.

Now back to my good ol’ gyno – my husband and I were so frustrated at this point that we went in with my mother-in-law for someone who may be able to mediate and get some answers. We got none – in fact we were told that I didn’t appear to have endo symptoms and needed to see a gastroenterologist before he scheduled my laparoscopy. So I did that, despite being pissed. I had a colonoscopy and endoscopy and appeared fine. So I called my gyno and a laparoscopy was scheduled – three weeks out.

Now, let’s fast forward to November 7, 2012 – the day of my laparoscopy. I go in for the surgery, and when I wake up from the anesthesia my husband is not around (I was told he would be able to come in after the surgery ended). I asked the nurse to get Tyler, and when he comes in, he says good ol’ doctor gyno never told him the results of the surgery. The nurse apologized for his behavior, and said he went to deliver a baby, and that she would page him. All the problems I had with this gyno hit the roof. I had just had surgery and he couldn’t even take the time to speak to my husband??

When he came back, he said that I had endo. He said that it was “removed and the best solution was to get pregnant to slow symptoms down.” No, I am not kidding.

Since Nov 7, 2012 – I have only been able to work 3 days – I am still in a great deal of pain. I recently went to a pelvic pain specialist where I found out that I do have IC and PFD. I was also told that my specialist is not 100% sure that I have endometriosis because my gynocologist didn't document his findings from the laparoscopy well and did not take a tissue sample to confirm that the lesions where endometriosis. I will have another cystoscopy for IC treatment in January and will have another laparoscopy soon after.

Thanks for reading - and thanks for allowing me to share!
xo Heather
http://hello-endo.blogspot.com/
@helloendoblog


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If anyone else would like to share their story on this blog drop me a line at vintagelib@gmail.com and I'll feature you.

Rent

I went to see a local production of the musical Rent on Wednesday. I seriously enjoyed it - sure the actors were out of tune sometimes but it made me laugh and cry and not want it to end so I think they did their job!

It brought up a conversation with the two people I went with - they're probably about 10 years older than me, so they were a little more aware/alive when the AIDS epidemic was happening in the 80s and early 90s. My parents have always told me about friends of theirs who died from AIDS but I wasn't really aware of how severe the situation was until I visited San Francisco earlier this year and visited Castro with one of my dad's friends. I didn't realise how the community was decimated by this illness that no one knew how to treat. (We still don't have a complete cure, just drugs to suppress it if you have the money to pay for them.)

I think it's interesting how this big event seems to have disappeared from the Western public's consciousness so quickly. Sure, we've all seen the bowling ball grim reaper ads, but I'm sure we think that it would never happen to anyone we know, that that only happens in Africa now, and I think people my age find it hard to imagine what it was like to be living when the epidemic was going on.

I'm planning on checking out this documentary about the AIDS epidemic in San Francisco, have a look at the trailer if you're interested in hearing about it.

Watch 'We Were Here' Revisits San Francisco's 80's AIDS Epidemic on PBS. See more from PBS NewsHour.

Lessons I have learnt from travelling with a chronic illness

via Pinterest

I was going to write a post on tips for travelling with a chronic illness in relation to my own trip to Jakarta last week. While that trip went quite well compared to some of my previous trips, I'm still disappointed that after about 2 months (that's seriously a record for me a the moment) of being cold/flu/gastro free, I've ended up with a sore throat this week and a pretty sour mood from being so tired. So no tips from me... only some thoughts.

The reason I think I was cold/flu/gastro free for two months was just because I stopped travelling and actually rested. This year has been a whirlwind of trips - I've been to the US twice, Germany, Papua New Guinea, Brisbane, Sydney, Melbourne, Perth, and Adelaide multiple times. I tallied up all the flights I had done this year by October and it came to something like 42. Then I stopped counting. I would not advise that you travel as much as I do in normal situations, let alone with the added complication of not having 100% of your health. [Side note - I'm seriously planning on cutting down on the travel next year. Also, I'm incredibly lucky that my body actually lets me do these trips to begin with, some people with endometriosis are pretty much bedridden.]

Despite my best efforts to rest as much as possible before, during and after my most recent trip, I still got tired, and subsequently sick. Air travel is draining. Well, any kind of travel is draining. I'm not sure if that is recognised enough in our society. People think that because you are just sitting in one spot that it surely can't be too hard on your body, but it is. Couple that normally draining activity with endometriosis and you get one wrecked person. This may be hard for other people to understand, because it is an "invisible" illness (one not immediately apparent from looking at someone), which can make it difficult when trying to explain to friends, your boss or your family as to why you are just so tired compared to them. However, just because someone else can't see the disease that is messing with your body does not mean that you are lazy or weak.

Travel has really highlighted to me the quick-fix nature of our society. In lieu of a cure for endo, at the moment all I can do is give my body good food and as much rest as possible. There is no magic pill for this disease. If I go to a doctor with pain and fatigue now, there is really not much that s/he can do for me if I don't take care of myself first and recognise my limitations. Some diseases are like that. We (as a society) have gotten used to the idea that pretty much everything can be treated with a simple pill, when in fact, that is not true for everything.

So for now, I'm constantly re-learning to accept that I probably won't be able to do as much as some other people my age may be able to do, or as much as I'd like to do, but I still have to make sure I have time for the things that are important to me, the things that make life worth living.

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Last month I took part in National Health Blog Post Month. This post was inspired by one of the prompts from that challenge that I didn't get around to writing about during the month itself.

By the bridge

Denim Jacket: op shop

Belt: op shop

Dress: hippy store on the Gold Coast

Shoes: Betts

Necklace: shop in Perth, similar-ish here

Bucket list

Inspired by Mighty Girl, I've written a bucket list. This is definitely not a static list, and I'm sure I will edit it later. I added some things that were on my teenage bucket list that I've already accomplished, to give myself some motivation by seeing what I've already achieved. Some things on the list are silly and small and you might think they aren't worth listing, some things seem almost impossible. Might as well dream though...


Fly business class | Go to Zanzibar with K&K | Go to the tectonic plate boundary in Iceland | Bathe in a natural thermal pool  | See the Aurora Australis or Aurora Borealis | Do a Masters/PhD in Science Communication | Adopt or foster a child | Raise $1000 for endometriosis research | Live in the USA again | Go to Yellowstone National Park | Go on a blind date | Become a teacher | Organise an endometriosis awareness event | Take a road trip across the US | Visit all 50 US states | Stay in an ice/treehouse hotel (or similar strangely themed hotel) | Go kayaking on Lake Burley Griffin | Sustain an endometriosis support group for Canberra | Attend Holi in India (while I’m there, go to the deserts and the Taj Mahal) | Work in natural hazards | Go to the Great Wall of China | Go on a wine tour of Canberra & surrounds (where I don’t have to  drive) | Camp on a beach | See bioluminescence in a water body | Learn flamenco | Take Bollywood dance classes | Organise my bedroom so its rid of any unnecessary clutter | Give $50 to a busker | Cut my hair short | Own a piece of art  |  Eat sushi in Japan | Live in a house with a window seat  | Attend Loy Krathong, the sky lantern festival in Thailand | See the Nutcracker ballet again | Get a company to sponsor an awareness campaign for endometriosis | Go on a yoga retreat | Write a guide to my top ten places in Canberra | Host a cocktail party | Write thank you notes to my teachers | Dye my hair pink | Attend an Indian wedding | Have a car with a sunroof | Go for a week using only landline phones | Be in Canberra for the centennial celebrations | Sleep in a glow-worm cave | Quit facebook for a month | Try acupuncture | Finish or give up on all of my unfinished projects in my house | Live out of backpack | Go on a week-long sailing trip with friends | Go back to San Francisco and not get ridiculously sick this time | Achieve a Bachelor of Science with Honours | Get an article in a magazine about endometriosis |  Have read or attempted to read every book on the Dymocks Top 101 for at least one year | Try the endo diet for 2 months | Start a petition on Change.org | Go walking on a glacier | Live in a south-east Asian or pacific country | Have a gap year | Go to New Orleans | Watch the Graduate | Watch all the Brat Pack movies | Take any future child[ren] I may have to a sleepover in a science museum (or borrow someone else's kid) | Go to Moonlight Cinema | Organise my tea collection | Go back to Rabaul, PNG | Spend the day at a spa | Manage my endometriosis using diet/supplements/exercise, without the need for surgery/hormone intervention | Eliminate refined sugars for a month | Complete the Couch to 5 k challenge | Have an avocado smoothie | Move out of home


I've bolded the goals that I am planning on attempting in the next few months - particularly going on an endometriosis-friendly diet in January to see if it makes a difference (can't hurt!).

What's on your bucket list?

My favourite thing to do when I travel

When I'm visiting a new place, I like to wander around by myself and soak it all in. It's my favourite way to see a city. I particularly like visiting local supermarkets. It might seem like a mundane thing to do when you're in a new country but I quite like it. I like to see what it would be like to live in whatever country I'm in and to try whatever random stuff is around. Tonight I tried a "grass jelly" drink that did not taste like grass but didn't taste like much else either. I also tried tempeh and something else that was black and crunchy (who knows - I don't even know if it was meat, bread or vegetable) and I can't say that either was my cup of tea but I just love trying new things anyway. I get a little thrill from it.

The ice cream section of the supermarket. They like their Magnums over here.

Some of the random things I got from the supermarket - date and longan flavoured green tea, bottled milk tea, (I'm in iced tea heaven over here), some of the local sweets, and a Ritter Sport sampler pack that seems to be very common over here

I'm having trouble capturing what Jakarta is like in photos - everything is just so big and new to me. This photo was taken in the Grand Indonesia mall - that's right - this thing was in a mall. There is also a mini Moulin Rouge and Times Square.

View from work where I am helping out with a workshop this week. Skyscrapers in every direction as far as the eye can see.

Before leaving the hotel I added a cardie to this ensemble - I'm playing it safe in this majority-Muslim country

Yummy Sushi Groove in the Grand Indonesia mall - a must-try.

I have to say, I am loving Jakarta. To be honest, I thought I would hate it as I love wide open spaces and greenery and don't enjoy pollution and being in huge crowds of people, but it's fun.