Friday, October 15, 2010

On Illness and Defeat

Study has always been a good outlet for me. I'd consider myself bright, not exactly smart per se, but bright, able to tackle concepts and write about them. I've done well academically, did well with my SATs and my ACT. I've breezed through university classes, often at the top of the class. And yet, as I approach my 30th birthday, with a number of years of higher education behind me, I still have yet to achieved a diploma or those fancy letters after my name.

It's been a combination of battling depression and becoming ill as well as moving away from an area in which I could study; I also became a mother and wanted to focus on that.

It was always my goal to go back and finish my degree when my daughter started school. I've struggled with what it is I'm good at, what I want to spend my time doing. My interests have ranged from working with children to advocacy. I have wanted to, for years, to be a birth educator and a fertility consultant but the fear of failure holds me back. Also, that fear of other people and their opinions weighs heavily in my mind.

When Matt first dropped the separation bomb, I was overwhelmed with grief and fear and nausea. I threw myself, literally, into the gym and worked out my anger and my sadness and my fear. I found my arthritis improved dramatically and I felt so much clearer in my head. So what my GP had been saying about exercise and arthritis and exercise and depression was really true?! Why did it take this long to figure it out!?

I decided to get my affairs in order with Victoria University and begin studying towards finishing off my degree. They decided to accept a fair share of my previous courses and I was all set to start when they sent a curt 2 line email explaining they had closed off applications for all but graduating students and, on that day, 1499 others plus myself found ourselves floating with no university, no plans and no options.

Victoria refused to answer questions, my emails went unanswered, my phone calls unreturned. It came out that they had indeed left applications open, for international students, the real cash cow of NZ.

Massey University, also in town, was very gracious and decided to accept a late application. However, they said, they would only accept 4 of my numerous courses and I had to start over again. Angry and startled by such a stupid policy, I decided to start a new degree vs paying twice for the same BA in English and History. Bad move #1.

Bad move #2 was feeling pressured to study more than I could safely handle. I signed up for 3 classes, 1 100 level pre-req and 2 200 level pre-reqs. 2 exams and 1 research proposal.

And things started out well. I did quite well on my first assignments and then I started developing some bad stomach pain. Well, abdominal pain is quite common for TRAPS, it's often a sign a flare is coming. My fingers started to swell madly and I had to increase my steroid to 40mg to be able to uncurl my fingers and move my hands. The side effects of the steroid, going from 4mg to 40mg is intense.

The first side effect you notice is the a sort of madness, a delirium and a racing heart. It's not quite euphoria, because you don't feel super happy, but you feel super energized with reality shaded a bit grey. You actually can get quite a lot done in those first few days. But then the insomnia kicks in. The racing heart, the hair loss begins rapidly and the headaches kick in. You feel exhausted but wound tightly, like a spring. At any moment you could go from happy and calm to violently emotional.

I would cry watching Rachel Ray chop potatoes so perfectly. I would cry watching my daughter sound out words. And then I'd snap and yell at the cat for scratching. It is very, very unsettling.

As you can't be on the higher doses for long, you spend 10 days in this unsettled emotional rageway only to begin the weaning. Weaning, as the word sounds, is painful. Your body, as it has not produced it's own cortisol, begins to squeeze hard on the adrenal glands. They begin to ache, headaches and nausea are common. I tend to vomit during the drop from 15mg to 10mg. This is the stage where hair shedding intensifies. Losing clumps of hair is common, as is the loss of your eye lashes. The hair on your chin, however, grows quite quickly on steroids.

The headaches are some of the worst; they are crippling in intensity and very few pain killers actually respond to the headache because the body is sending signals that it is cortisol deficient and needs help. The insomnia continues and the body reacts to the withdraw. Diarrhea, vomiting and volatile emotions are common. I am more ok with the emotions at this stage as I can rationalize what is happening and verbalize a lot better.

Finally! Victory, I'm down to 5mg again!

It was during this time we all came down with a horrible winter cold and because the body requires more cortisol when ill, my body became adrenal deficient. I had begun noticing a hard, stabbing pain in the area of my right adrenal gland and put it down to being adrenal deficient. A trip to the A&E brought the suggestion I had a kidney infection and I was restricted in food and fluid until my body regained adrenal stasis (and the steroid went back up to 20mg). I began a 10 day course of antibiotics for the kidney. As I'm allergic to most antibiotics for urinary problems, I got my old friend Nitrofurintoin. It has the tendency to make your pee orange. Which is completely awesome at 7am when you are completely unsuspecting of such things. Whoa! Orange pee!!

However, the abdominal pain became worse and I began throwing up. Was it the weaning off the 20mg or something more? Another trip to the A&E resulted in the diagnosis of Cholelithiasis, which I believe is the presence of gallstones in the biliary ducts. The doctor, as he prescribed major narcotic pain killers, said: It's a bit like giving birth, gallstones. Your gallbladder must dilate to push the stones out. Over and over!

I rang to get an emergency appointment with a private gastroenterologist and was told I couldn't do so until the 5th of November. Then it was at least 7 weeks away. At this stage it's not too far away. I've had repeated bouts of the gallbladder pain and attacks. I've given up food but not caffeine. I've drunk olive oil in 1/4 cup amounts mixed with a drizzle of lemon juice. I will never do that again.

I've drunk numerous cups of liver tea and eaten the dried herbs. Nothing has helped. At this point, as the doctor said, I either have it out on my terms via elective surgery with the gastro or it comes out once it reaches an emergent stage.

Emergent was described as having labs indicating infection, inflammation and fever. I've yet to sustain all 3 long enough for labs to be drawn and interpreted, which leaves only the elective option.

The pain is intense and cruel at times. The worst pain is the upper back pain from the swollen gallbladder pushing on the liver. Livers weren't meant to be bounced around, let me tell you. The pain is often intense and followed by vomiting and diarrhea. It is hard to sleep with such pain. The narcotics make you jittery and blurry; there are hot flashes and night sweats. It is impossible to think after a night of night sweats and insomnia. The narcotics stop any chance of a fever being recorded, thus creating the roadblock of not getting all three emergent signs.

Really Bad Pain
The most typical first sign of gallstones is pain — sometimes excruciating pain — in the upper abdomen or right side. This is sometimes accompanied by fever, vomiting or sweating. The most common treatment is surgical removal of the gallbladder, although there are other treatments, depending on the type of gallstone, the severity of a person's attacks and the presence of complications such as infection.

Most treatments are much more successful if they are given early on. Anyone who thinks they might have gallstones should see a doctor as soon as possible.

Typical symptoms

* steady pain in the upper abdomen that worsens rapidly and lasts as long as several hours
* pain in the back between the shoulder blades
* pain under the right shoulder
* nausea or vomiting
* abdominal bloating
* recurring intolerance of fatty foods
* colic
* belching
* gas
* indigestion
* sweating
* chills
* low-grade fever
* yellowish color of the skin or whites of the eyes
* clay-colored stools *

Having ongoing biliary colic and passing gallstones isn't exactly the environment conducive for study, creation and understanding of abstract concepts. It was during this time my studies started to eclipse my ability to do the work.

And now I'm faced with withdrawing from the classes and lodging a plea with my loan. It is, without a doubt, a defeat. It is, without a doubt, one more very visible sign of the illness winning.

Because TRAPS is a disease of inflammation no one can decide whether the gallbladder is, in itself, a diseased organ or it is the disease of inflammation that is ravaging the organ. All agree that it will be better once the organ is removed, however, the question then becomes -- what organ next? You can't simply cut and remove all organs once they become ravaged by disease.

That's a scary reality. It's a horrible reality. How many people have to confront those thoughts, ever, in their lifetime? Let alone as a young mother, a young woman, and a person with dreams and goals and hopes.

I'm not prepared to let the illness win, no matter how small the defeat. Illness is regarded as failure. There is often a lot of blame attached to illness. Because, if you had super powers, you'd just fix yourself up and get on with it. You wouldn't need help. G-d forbid needing help! We're trained from the age of 2 to be resilient, independent factory workers who need little instruction on pushing buttons over and over. We're not grown with empathy and compassion and a desire to help others. So illness is seen as a remarkable failure.

Remarkable because you just keep failing, and oh, isn't that sad? Pity, tsk, tsk.

Here I am having to lodge a plea and beg for understanding when it should be granted without thought. As a family we have struggled through hardship -- financial, emotional, work compassion wise. Every day is a justification that the illness is real. Someone once commented that my struggles were not due to illness, but because I hadn't adapted to life as a mother.

That one comment has haunted me. Illness, the failure to be normal, is seen not as a justifiable situation, but a self-made creation that must be granted permission by anyone and everyone at any moment's notice. I am required to give notice of my illness to anyone who asks, and as it is a rare and misunderstood illness, I must provide adequate research to anyone who questions the validity of what I am saying.

The illness, the defeat, the failure is constant. And yet again, I have failed. Failed to achieve normality, failed to achieve despite everything else going on in my life. I'm seen as a risk, a liability. A bludger on society.

I understand the situation is out of my control, that the disease is unpredictable and that I have tried very hard. Given time and adequate support, I promise my research proposal would be amazing. Do others understand these same things? Will a group of people reading my plea understand my good intentions? My hard work? My desire to push past the limitations of the illness?

Sandeep Joseph, Managing Director, XM Malaysia, writes: "...there is a lot we can learn from failure, and it is worth the effort. Whether we learn lessons about bouncing back, or we learn lessons about perception, and the biases we bring to our decision-making processes...And it set me wondering about how we perceive failure. Do we embrace it, understand and learn from it, or do we seek to brush it under the carpet, deny reality and pretend we never got it wrong in the first place? Do we seek excuses, alibis and escape routes?" *

No excuses here. I simply failed to ever catch up. I haven't felt well enough to do work and it was only this week when I started feeling a bit better that I got into contact with my disability coordinator and asked her opinion. We should have done this earlier she said. I know, I said. I just didn't feel up to it. And it simply didn't matter enough to push through the pain. And I think that speaks volumes. If it was something I truly had a passion for, I probably would have pushed through it, much like I did last night working on Lady Gaga's pants for Halloween.

It was a bad move, a bad choice, a mistake. I know I want to work as a birth educator and a fertility consultant. I know that, you now know that. So why am I so hung up on pleasing people and trying to amass a fancy degree to show I'm worth something?

Put simply, I don't know.

The powers that be have accepted my desire to withdraw from study and I get my plea papers next week to fill in. I feel sad and that overwhelming fear of the future is bearing down on me. The gallbladder pain is gnawing and clawing at me and I'm due for a dose of Meloxicam.

It's hard to feel solvent when life is so unpredictable and so out of your own grasp and control.


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