Day 30: This is not the end

This is not the end

Well here we are, day 30! I can't believe I got through this entire challenge blogging every day. I only resorted to other people's material on 4 or 5 posts. I must admit, I'm pretty proud of myself. And I'm so pleased with the response I've been getting. My blog hasn't exactly gone viral but I know that a few people have been reading it and they've given me some great feedback. Even my own parents have told me that they kept learning new things. This is a very positive sign for me and I'm so pleased I took part in this challenge.

Day 29: Overcompensation and the inferiority complex

Overcompensation and the inferiority complex

One thing I've noticed about a lot of movies or TV series, the fat person is always portrayed as funny and struggling with their weight. That is, if they want us to like the "fat person". If they don't, they will be sour, lazy, overindulgent people who seem to lack self control. Where is the overweight, well adjusted woman who enjoys having her large pizza but is also capable of working hard and being productive? Don't tell me she doesn't exist because I meet these kinds of people all the time!
The reality is that we are made to believe that being fat is something we should be ashamed of and should therefore compensate for in other ways. I'd like to say that I have not been brainwashed by this notion especially since I KNOW that my weight is due to a health problem however I'm just as "weak" as the others. What I mean by this is that because my weight is something I feel I have no power over and am very ashamed of, I tend to try and overcompensate for it in other ways.

Day 28: Which came first, chicken or egg?

Which came first, chicken or egg?


One of life's philosophical questions is: Which came first, chicken or egg? One of my evolutionary psychology lecturer asked us this question back in year 1 of my BSc and we came to the conclusion that it cannot be answered. After all, it appears one cannot exist without the other.

Day 27: Radiation therapy

Radiation therapy

Radiation can be given in small doses over a six-week period, or by a technique called stereotactic radiosurgery or gamma-knife radiation.

Day 26: Bilateral Adrenalectomy

Bilateral Adrenalectomy a.k.a. BLA

Many patients opt to have a BLA after several unsuccessful pituitary surgeries or when a pituitary tumour is not visible. Sometimes BLA is the first option if the Cushing's is caused by tumours on the adrenal glands. In my case, the tumour was on the pituitary gland but I don't know where the source of my recurrence is.
I have met several people who after 3 pituitary surgeries finally have a BLA as they still have Cushing's symptoms.

I couldn't find a good video explaining what BLA is as the only videos on YouTube are of the actual procedure which again, freaks me out! Feel free to have a look for yourself but I'm staying clear.

Here's a description from a website:

Open adrenalectomy
The surgeon may operate from any of four directions, depending on the exact problem and the patient's body type.

1. In the anterior approach, the surgeon cuts into the abdominal wall. Usually the incision will be horizontal, just under the rib cage. If the surgeon intends to operate on only one of the adrenal glands, the incision will run under just the right or the left side of the rib cage. Sometimes a vertical incision in the middle of the abdomen provides a better approach, especially if both adrenal glands are involved.
2. In the posterior approach, the surgeon cuts into the back, just beneath the rib cage. If both glands are to be removed, an incision is made on each side of the body. This approach is the most direct route to the adrenal glands, but it does not provide quite as clear a view of the surrounding structures as the anterior approach.
3. In the flank approach, the surgeon cuts into the patient's side. This is particularly useful in massively obese patients. If both glands need to be removed, the surgeon must remove one gland, repair the surgical wound, turn the patient onto the other side, and repeat the entire process.
4. The last approach involves an incision into the chest cavity, either with or without part of the incision into the abdominal cavity. It is used when the surgeon anticipates a very large tumor, or if the surgeon needs to examine or remove nearby structures as well.

Laparoscopic adrenalectomy

This technique does not require the surgeon to open the body cavity. Instead, four small incisions (about 0.5" [1.27 cm] diameter each) are made into a patient's flank, just under the rib cage. A laparoscope enabling the surgeon to visualize the inside of the abdominal cavity on a television monitor is placed through one of the incisions. The other incisions are for tubes that carry miniaturized versions of surgical tools. These tools are designed to be operated by manipulations that the surgeon makes outside the body.

I think that the majority of patients have Laparoscopic surgery now (thankfully!!)

So what are the pros and cons of this one?
Again, apart from the obvious risk from the surgery itself. Cons:

• Longer recovery time
• Bigger risk of infection as there are more wound sites
• Lifelong medication (your body will no longer produce cortisol therefore you must take medication to replace it)

I actually struggle to find many pros apart from the fact that it has high success rate of curing Cushing's! I know a few people who have had a BLA and now lead happy, healthy lives. But the truth is, this procedure scares me. The idea of removing my adrenal glands completely.... Well let's just say I'm exploring my other options first.

Day 25: Transphenoidal Surgery

Transphenoidal surgery


So, as some of you may recall I already underwent transphenoidal surgery back in September 2010. The procedure itself was not really painful but recovery was a long and painful process.

Rather than explaining it in words, I have found this video on YouTube which is very easy to understand and provides some good visuals. I opted not to show you a graphic/live version partly because I don't want to watch it myself. If I have to go through it again I don't think I can bear seeing it in such details. Feel free to search YouTube yourself for those videos.

Contrary to what this Dr says, after surgery you have a lot of packing (bandages) placed in your nose. This is done in order to prevent any kind of leakage from the wound which could be very serious. Actually, the most painful part of the procedure was removing the packing a couple of days after.

So now to the pros and cons. Well without going into extreme detail like listing all the possible things that could go wrong with the surgery itself e.g. adverse reaction to anaesthetic, damage to optic nerves or carotid arteries. Here are a couple of things that are a serious threat (I compiled this list using information I found from reliable sources i.e. people who've suffered these problems post-op)

• CSF leak (CerebroSpinal Fluid is the liquid that surrounds the brain and spinal cord) - I think it's pretty obvious why it would be a bad thing to be leaking brain fluid...
• Developing Diabetes Insipidus - This is not the same as the commonly known diabetes. This one causes excessive thirst and urination
• Developing a serious infection at the wound site i.e. in the sinus
• Damaging the pituitary gland - this can lead to many complications including messing up other hormones which are also critical to functioning

On the other hand, transphenoidal surgery has some advantages over other treatment options:

• Minimally invasive
• "Been there, done that" i.e. I know what to expect as I've been through it before
• Good chance of remission
• Less likely to have to be on medication for life

What do you think? Would you want to go through this? AGAIN!

Here's what I looked like after the first one

Day 24: BLA is not a qualification

BLA is not a qualification


In one of my Cushing's groups, a newbie was inquiring about what AI was. One of the group members humourously replied that it could stand for Artificial Insemination, Artificial Intelligence or in the Cushie context, Adrenal Insufficiency. Makes you realise context is everything.

After a quick search on Wikipedia, it turns out BLA could stand for:

• Baluchistan Liberation Army
• Bavarian Liberation Army
• Black Liberation Army
• or Bachelor of Liberal Arts

However, the BLA I'm referring to isn't a qualification or an army for that matter. No, I'm talking about Bilateral Adrenalectomy which is surgery to remove both adrenal glands. As I mentioned in a previous post, there is a chance I may be suffering from recurrence. I have had a few high cortisol levels which may indicate my Cushing's is back. Although this is obviously not great news, it kind of answers some questions as to why I wasn't losing any weight, my fitness level was decreasing even when I tried to exercise more and I was having some mild mood swings.

If I am suffering from recurrence there are a few options for me. Depending on what is causing it this time around I have several treatment options: undergo another transphenoidal surgery (neurosurgery to remove a tumour on the pituitary gland), a Bilateral Adrenalectomy (removing both adrenal glands), Radiation or Chemotherapy. Unfortunately medical therapy is not really a viable option with Cushing's as it does not offer a long term solution.

Over the next few days, I will go through the pros and cons of each option and explain the procedures in a bit more detail. Though these may not be necessary for me in the end as I'm not even sure I really have a recurrence, I think it is a good idea to educate people on treatment options. I hope you will find the information interesting and that it will help you realise how serious Cushing's and its treatment is.

Day 23: Drugs are bad mmkay

Drugs are bad mmkay


So here are the meds I've tried, have been on or currently am still on to "fix" my Cushing's and symptoms associated with it.

• Typical over the counter stuff for headaches e.g. Paracetamol and Ibuprofen
• Anti-depressants for off-label use as sleeping aids
• Melatonin for sleep
• Antacids
• Lansoprazole for stomach acidity
• Enalipril for high blood pressure
• Some diuretic to help make the BP med more effective
• Hydrocortisone (cortisol replacement)
• Dexamethasone for cortisol testing
• Tetralysal for acne
• Benadryl (which is suppose to be for hayfever) off-label use for headaches

I also tried some "natural" remedies such as Flowers by Bach for stress relief and Chromium Picolinate to reduce appetite.

The list actually isn't that bad but I just hate the fact that for the last few years I've had to take pills every day. But I shouldn't complain too much. If I end up having to have a BLA I will need to take more than 1 pill every day!

Come back tomorrow to find out what a BLA is and why I might need one.

Day 22: But who's keeping score?

But who's keeping score?


One of the suggested topic from the Cushing's website is to write about what we've gone through to try to be cured. I am not going to write about my long journey to a diagnosis again which you can read by clicking HERE if you want, however I will summarise all of the tests and interventions I've had so far (and that I can remember).

2009:

• 2 x "regular" blood draws to check cortisol levels
• 2 x 24hr Urinary Free Cortisol collection (collect all urine being passed for 24hrs)
• Low dose Dexamethasone suppression test (take dexamethasone doses and then have blood drawn at 8am)
• *edit* I forgot to mention that I also had a CT done of my kidneys

2010:

• High dose Dexamethasone suppression test (take dexamethasone doses and have blood drawn every morning at 8am over 2 days)
• 3 x MRIs, two without contrast and one with contrast (meaning having dye injected into the veins)
• 2 x 8am fasting glucose blood tests 
• 8 (maybe more) blood draws to check cortisol and other hormone levels
• Transphenoidal surgery (to remove the tumour)

2011:

• Low dose Dexamethasone suppression test
• 3 x 24hr UFC (urine collection)
• Bone density scan
• 1 blood draw to check baseline hormone levels

2012 (so far):

• 1 x 8am fasting blood glucose and cortisol level check
• 3 x 24hr UFC (urine collection)
• Low dose dexamethasone suppression test
• 1 x MRI

All I can say is WOW!!!! And considering I started testing in September 2009 and we're only in April 2012, I can't even imagine the countless amounts of interventions those who are testing for several years go through. I'd also like to point out that I have not included in this list all of the blood tests I did before when they suspected everything from PCOS to Thyroid issues.

No wonder I hate needles now and when I get to the blood draw clinic, if I see the nurse wearing a TRAINEE badge, I ask to change. Let someone else be a pin cushion for once...

Tomorrow's post: MEDS!

Day 21: Here we go again

Here we go again


So I finally heard back from my endo yesterday. I had emailed her back in February when I received the letter about my test results and it appears she refuses to reply by email opting for the ever so slow snail mail option!
Anyway, she confirmed that the 2 x 24hr UFC tests I did back in January showed elevated levels of cortisol (no idea what happened to my 3rd pee jug!? Sometimes I don't know why I bother...) and that I failed to suppress in the low dose dexamethasone test. For those who don't speak Cushie test lingo, UFC stands for Urinary Free Cortisol and is one of the standard tests for Cushing's. The lab tests the amount of cortisol present in 24hours worth of urine because your levels rise and fall naturally during the day. By calculating the average concentration, the lab is able to determine whether the result is low, normal or high. In my case, the results were apparently higher than normal. I also did an overnight dexamethasone suppression test which is basically a way to measure your adrenal glands response. When you are administered a dose of dexamethasone, your body should suppress its production of cortisol in response, however this is not the case if you have Cushing's. For more information about testing for Cushing's (or any other Cushing's related info for that matter) please visit the following website which is packed full of useful information: www.cushings-help.com

I know the drill, I've been through all these tests before. I know that the next logical step is a high dose dexamethasone suppression test to determine whether the source of my excess cortisol is indeed the pituitary gland. There are other possible sources of Cushing's such as a tumour on the adrenal glands or somewhere else. I will also probably have to have another MRI though I had one not long ago in HK and I am seeing a neurosurgeon about the results at the end of the month.

I am in a tough spot right now because I obviously need to tend to my health but there isn't much I can do here in HK. I have that appointment on the 30th and I also have an endo appointment in June but to be honest there isn't much point in getting anything started here now since I've decided I will be moving back to London. I am seeing my endo in London on the 17th of July and that will probably be when things really get moving.

In the meantime, I have to try and stay focused on the tasks at hand which are finishing my masters, applying to the DPsych (Professional doctorate in counselling psychology) and planning my summer holidays. I'm trying hard to stay positive though I have to be honest, sometimes it's tough and I really feel on the verge of a breakdown... I'm just grateful to have my parents so close as they help me deal and keep me sane. I just wish I had more of my friends around for support although I appreciate the virtual and long-distance support I receive.

Day 20: Through grief comes growth

Through grief comes growth

I am currently attending a workshop at my University on grief therapy for traumatic deaths. For those of you who do not know what that is, a traumatic death is one that occurs suddenly or unexpectedly e.g. car accident, suicide, homicide, etc...

Though I am fortunate enough to not have experienced much death in my life so far the process of grieving for a lost loved one is a bit like grieving for the loss of the "healthy self". When you become ill even if you have a chance of recovery, you have to learn to deal with the loss of some aspects of your previous life. In my case for example, I have to accept that I will never be able to wear a bikini again. Even if I manage to lose enough weight to find one that fits, the idea of bearing my stretch mark covered body just doesn't appeal. The truth is, it used to bother me a lot, and some days it still does (especially when I see photos of slender and beautiful models at the beach) but really there's so much more to life and at the end of the day, I don't really care anymore!

Something interesting the lecturer said today which is very true is that "Through grief comes growth". As he reminded us, usually when everything is going well in our lives we just plod along and leave things as they are. If it ain't broke, don't fix it, right? But when something happens, like someone we love dies, or a part of us dies, we are forced to re-examine our life. Some people even suffer an existential crisis i.e. search for meaning in their lives. Through this search, grief and re-examining, we can learn to grow. I have certainly grown a lot through the adversities in my life.

So I invite you now to think back on the major changes in your life, the times when you feel you grew and matured the most. Was it when everything was fine or when you were super happy? Or was it when life kicked you in the nuts?
If you're brave enough, feel free to share in the comments section and we can share our experiences. 
I hope you'll be able to look back on the hard times and rather than feel sad or regretful, be grateful and appreciative of the fact that you made it through and are now on the other side. 
 And if like me you're not quite out of the woods yet and are struggling with the fight, look back so that you remind yourself that you've faced adversity before and you are strong enough to face it again! 

Day 19: TLSC 4

The lighter side of Cushing's 4


The term BBW refers to Big Beautiful Woman. Unfortunately this term is not widely used or even known as there still seems to be a prevalence/preference for skinny/slim woman. Since suffering from Cushing's I have been every size from 10-26 (UK) and am probably at my heaviest/biggest right now. Though I find this very depressing and I try my hardest to watch what I eat and exercise, there isn't much more I can do about it until my hormones get sorted out. So I'm trying to accept myself and love the BBW I've become. Here are some fun photos and a video by Mika entitled: Big Girls (You are beautiful).

Day 18: TLSC 3

The lighter side of Cushing's 3


Here are some more cartoons that humorously depict having a rare disease:

Day 17: TLSC 2

The lighter side of Cushing's 2 (TLSC 2)


I'm sure you've seen a few of these floating around. The "What others think I do" images which have been created to depict several jobs or situations. Here's a couple on illness:

Day 16: The lighter side of Cushing's

The lighter side of Cushing's (TLSC)


I have a very busy week this week with the last few assignments of my course due soon. Therefore this week will be much lighter posting wise. Because I love to laugh and especially enjoy sarcastic, dry and sometimes even dark humour, I have decided that for the next few days I would post various cartoons, videos, etc. which humorously depict what it's like to have Cushing's (or some other chronic illness). Although these will (hopefully) make you laugh, I also hope that they will make you stop and think a bit more about what it's like being in my shoes. Perhaps you will not find everything funny as some jokes will be so far from what you understand/experience, but I hope you will still enjoy them.

I'd like to start today with the following which really made me laugh out loud:

Day 15: Is it too soon?

Is it too soon?


Earlier this week I was staying with some relatives and a distant cousin of mine who is 5 years old asked me: "Do you eat chocolate every day?". When I replied no, I was glad that she moved on to something else. But I wasn't so lucky after that. A few hours later, she started stroking my arm and laughing about how fat it is. "You have a fit thigh" she said, confusingly using the word thigh to mean upper arm. I was not offended by her comment as she was right but I simply replied: "Yes you're right, but this is my arm not my thigh". She then proceeded to ask me why my arm was so fat. I didn't know what to say!! I replied the usual response that any panicked person being questioned by a 5 year old gives: "Just because". What I failed to anticipate was that this time she wasn't going to let me off easy. "But WHY?", Why, why, why, why, why???? (Any one with kids or who's had to deal with kids will know how persistent they can be when you do not give them a satisfying answer). As I was debating in my mind whether to tell her it was because I was sick, I decided to distract her with a question of my own "Why is your hair black?". I'm not going to give you all the details about how she quite intelligently pointed out that it was because everyone in her family had black hair but basically, I got outsmarted by a 5 year old!!!

But the reason I'm sharing this story with you is because it really got me thinking, when should we start telling people/kids about things like disease and how they can affect you? How can we expect children to grow up without prejudice or misconceptions about overweight people if we do not provide them with an alternative explanation. It is normal that a 5 year old will assume that someone overweight eats chocolate every day because that's what is being portrayed around them. When I learned about the body in biology I don't remember being told that hormones affect weight. All I remember is being told that only a healthy diet and exercise will keep you slim and fit, and that eating badly will make you fat. So if even I didn't find out until I was 25, how can I expect this 5 year old to understand?

I remember I watched a program on TV a while back about people living with disfigurements. One of the guys on the show talked about how kids would often stare at him and either ask him (if they were brave enough) or their parents, why he looked like that. The man very rightly said that he understood their curiosity and in fact liked the opportunity to provide them with an explanation as this helped educate them. Part of me really wanted to tell my cousin that I was fat because I was sick and my disease affected my body but I think I was just too scared about what else she would ask. I was unsure about whether I could explain it to her properly and if it was really appropriate. I guess I was afraid of getting too serious with her considering how young she is. But with hindsight I regret not taking the opportunity. I think that she could have handled it and worse case scenario, she would have just changed the topic or stared at me blankly. Either way, I don't think it would have done any harm but it could have helped. We shouldn't be afraid of sensitising young people to the realities of life. It's not about scaring them it's about making them open, well rounded individuals. It's never too early to start education and awareness.

Day 14: "I want it"

"I want it"


Yesterday as part of my course I had an introductory class in Drama Therapy. One of the exercises we did was to partner up with a fellow classmate and improvise. One of us could only say: "I want it", whilst the other could only say: "You can't have it". We did this exercise several times over with some variations but the gist of it  was always, one person wanting something and the other denying them it. I didn't have any particular problem playing this game until we got to the final part. The lecturer told us to sit facing our partner and this time actually voice out what we really wanted in real life and for our partner to neutrally but sincerely reply: "You will have it". When it came to my turn, I started off by saying "I want to finish my Masters and get a distinction..." and tears started forming in my eyes as I said "I want to be cured, to stop having to go to the hospital and just be normal and well again". I then had to stop myself as I could feel a wave of sadness washing over me. I don't know why I became so emotional, I guess that's why drama therapy works! You think you're innocently playing improvisation games but in reality you're accessing your unconscious. I think that deep down, it really hit home for me that I want something i.e. to be cured, yet life is denying me it.

I often see on Facebook a post that keeps going round about Cancer. It goes something like: "All of us have a thousand wishes. A Cancer patient only has one wish, to be cured..." (I'm paraphrasing but that's basically it!) But I think this is true for anyone with an illness/disease. It is so important to remind people that because of how rare Cushing's is, we don't have as much support from the medical and general community as other common diseases such as Cancer. So please, remember that we want to be cured just like every one else who is sick. We did not choose to be this way by eating too much or being lazy. Cushing's is serious and it kills. By helping raise awareness and being there for people like me who need your love and support, you can be that partner that says: "You will have it".

Day 13: Luck be a lady tonight

Luck be a lady tonight


It's Friday the 13th! For some people today can either be lucky or unlucky and for others it's just another day. When you really think about it, isn't the concept of "luck" interesting? If you win the lottery, you are a lucky person because the odds of winning are anything from 1 in 114 million to 1 in 600 million. Yet I have Cushing's disease which carries 4 in 1 million odds and some would consider me unlucky because of it. But I could just have easily have been born with a chromosomal disorder as these affect 7 in every 1000 infants! Am I really unlucky because of Cushing's or should I instead think that I am lucky because I was blessed with so many other wonderful things which have helped me cope with it? I was fortunate enough to be born in a good family, brought up by two parents who love me, have all my arms and legs and my 5 senses function properly. I have never experienced war, torture, starvation or political oppression. All in all I reckon I am pretty lucky!

It's funny because today my washing machine suddenly stopped working. I panicked at first because I thought it was broken but it turned out it I only needed to reset the fuse box. Yesterday my water heater was acting up but it worked fine after switching it off and on again at the mains. I'm sure many of you have experienced internet or cable/satellite tv problems and when you call technical support the first thing they ask you is "Have you tried switching it off and on again?". So many things in our lives can be fixed by a simple "reset". This got me thinking, what if you could "reset" your life? Imagine if when something started malfunctioning you could switch it off and on again? Reboot it in a way. Wouldn't that be amazing? I started thinking back on my life, trying to figure out at which point I would have attempted to reboot. When I first started gaining weight and being depressed? When I was bullied in high school? When I wet the bed when I was 8 years old? I started to realise that if there was such a thing as a reset button, I would probably be pushing it all the time. But then I really thought about it some more and took into consideration my thoughts about luck and odds. What if you were given a reset button but by pushing it, you brought all the "counters" back to zero therefore it's as if the dice of fate were thrown again. What I mean by this is that you would run the risk of "tempting fate". In this lifetime I was blessed with a beautiful smile, a good sense of humour, a caring personality and Cushing's disease, what's to say that if I press the reset button I don't get stuck with a big ugly nose and a low IQ? What I'm trying to get at is that although your life might not always seem great, think about the million other ways it could be worse and you're sure to feel better about it! :)

The truth is, I'm not sure I really believe in luck, fate, etc... Some things are predetermined by genetics, others are outside of your control, and some you have complete control over. Everything works together to create the wonderful and interesting life that you lead. Sure, I could have not had Cushing's, but then I might not have turned into the person I am today. Perhaps if I didn't have Cushing's I might have had some other terrible disease. Who knows?
The fact of the matter is that many things in life are random but what isn't is how we choose to deal with them. As human beings we have ultimate freedom and never ending choice. So I choose life, love and happiness!

Day 12: A picture is worth a thousand words...

A picture is worth a thousand words...


When I signed up for this challenge I seriously underestimated how hard it would be to come up with topics for every post! I just got back from holiday and have tons of uni work to get on with. So I've decided that instead of trying to write too much, I would simply post some of my holiday pics.
These were taken in Singapore and Malaysia.