If You're On Prednisone, You NEED a medic alert bracelet

I was reading about prednisone last night, of course, because I am a geek. And one of the best resource I read about was
All About Prednisone by Robert D. Fusco, M.D.

One of the things that stuck with me the most last night was that if you are on a steroid treatment of 4 weeks or more, you have become adrenal sufficient and NEED a medic alert type bracelet and wallet card.

I've been on the steroid for almost 4.5 years and NO ONE has mentioned this to me!!

In the event of an emergency when no one can contact someone you know and love, you can slip into an adrenal crisis and no one will know what is triggering the symptoms.

This kinda sorta freaked me out.

Especially for those of us who have been on 40+ mg a day (often twice a day) for weeks at a time.

And the point was made that when you are weaning off Prednisone, you need more care and alert because your body is stressed from the wean, so should you become acutely ill or injured, you will need to increase the dose.

What?!

Why has NO ONE ever mentioned this? I was told to consider a medic alert bracelet for my sulfa drug allergy and/or chronic health woes, but no one mentioned prednisone or adrenal insufficiency.

Yikes.

The medal bracelet has never appealed to me because here you need a letter from your doctor, you then need to buy the bracelet and then pay the monthly fee for your medic alert bracelet. Hence why I never have bothered.

After reading the articles about Predisone and the need for overall awareness of the adrenal issues following injury or illness, I panicked. Google lead me to Mediband which can be bought off the website or in pharmacies in the US.

It's an amazing product! You can get a band in which you write on it, soak it in water and it will never rub off! Or you can get the pre-made bands alerting issues.

Much hipper, cooler and no monthly subscription fee.

They also sell a wallet card, though you can easily make your own.

A point on the site was made that you can wear the bracelets in hospital as they are NOT metal and it can help alert nurses and doctors of facts they may overlook.

As someone who was given sulfa drugs while wearing a bright orange band alerting the doctor to look at my file, being able to sport a bracelet featuring the words Sulfa Drug allergy may have prevented so much damage.

I am contacting them to make a Sulfa Drug allergy bracelet in their allergy style.



If you would like a steroid dependent and adrenal insufficiency bracelet, you can get it here.

Affordable. Bright. Attention Getting. Get Yours soon.

They also have a Facebook Page. Go like them now and ask any questions you may have.

The fantastic KirBir has a suggestion for you all:

There are others for sale from places like Walgreens which are like USB sticks in a bracelet, don't require a doctor's note, and are a little more discrete than those bright ones - http://www.walgreens.com/store/c/care-medical-history-bracelet-medium/ID=prod6016508-product?V=G&ext=frgl_Google_Medicines_&_Treatments

Or more stylish ones: http://www.stickyj.com/zy2068.html

A USB stick in the bracelet!? I'm getting one the next time Matt is in the US.

Now you really have NO excuse not to bling yourself up. It could save your life.

Predni-Oh nooo-sone

In November I'm going to 'celebrate' my 4.5 year Prednisone anniversary. And by celebrate I mean commiserate on the fact that I'm *still* taking it. And don't have twin 4 year old little girls. And haven't gotten well enough to write the next chapter of my life.

I started the drug at a fairly high dose and those first two weeks were like a dream. You would never have known I was sick. I felt so good my then GP told me to drop off the drug. That was mistake #1, I should have weaned.

I woke up unable to uncurl my hands (again!) and unable to bear weight on my legs. But, it was worse because it HURT all over. I now know that was the body's reaction to weaning immediately from a high cortisone supplement. It feels like you're wringing out a wet cloth. That twisting and burning is in your muscles.

So, that began my continuous supplementation. I've been on all kinds of doses, all kinds of methods (injection being the least favourable) and weaned more times that I care to count.

I'm currently sitting at 5mg and the desire not to wean is so strong I refuse to raise the dose to help this hip. Not gonna do it.

One of the side effects that gets mentioned but doesn't really gain much notice is the small infection abundance. Everyone knows Prednisone lowers your immunity and you get sick more often, but you also get icky infections.

My toes are a bit of a mess to begin with in that they grow nail that don't stop at the sides of my toes and that creates little nicks and pain. I manage by clipping the nails.

I noticed a little lump on the side of my big toe. It didn't hurt so I thought it was bit of excess skin or nail.

I got more curious as the days passed and got some tweezers in there to discover that the lump was a little well of green pus. I cleaned it out and gave it a thorough washing with soap and water.

As the days went on, the skin started pulling back and so I got the tweezers again. This time, the skin peeled away, removing nail with it. Suddenly, there was no skin, no nail and no nail bed. Just big, raw, red toe!

Eeek! I cleaned it, I wrapped it, it hurt!

I took Soph to the beach a couple weeks ago to help with her cough and walked around in the salt water. But that evening more nail came off. There was some nail bed there at least.

In the morning the rest of the nail was completely hanging off and there was green everywhere. I kept it clean and dried and when I saw the GP about my hip, I showed him my toe. Oh, he said. Yes, you get things like this on Prednisone.

Small infections that come about with delayed healing. Nothing big, and the nail bed will regrow.

I got some fancy antibiotic oil based ointment that took care of the infection, but the healing is slooooooow. The cuticle finally fell off this morning. It was hard and stiff like old fashioned plastic.

I think it will be a while before I get to have stylish, colourful toes for summer.

http://prednisonesupport.tumblr.com/ is a new micro blog for people to share their experiences on Prednisone. Mine hasn't been too bad, really.

This is my first slow healing infection in 4.5 years and it's probably been my best year on the drug in the whole run.

It can be managed, life on prednisone, and while it's not considered the best option, you can live on the drug long-term.

Once you find a stable dose, stay there. That rollercoaster of highs and weaning is so hard. And it hurts. If you don't want to raise your dose, you don't always have to. Doctors have NO idea what weaning down is like, so make sure you advocate to your best ability, however, there will come a time when you have to, irregardless of your feelings about it.

A Flare Survival Guide

I'd like to wave to my regular followers. Thank you for coming to this tiny blog and visiting. I'd also like to thank my google search visitors who are coming here to learn more about TRAPS. Most recently some folk from a hospital in Sweden visited and I hope (!!) found information to help someone with TRAPS.

I'm in the middle of a flare, the first in many, many months. I almost didn't recognise it.

For me, the TRAPs flare always follows a theme.

First there is an increase in output, ie poo. Lots of poo. Not watery poo that you deduce cholera simply from the symptoms, but there is more than normal. I also thought maybe it was finally time to cut the wheat.



Then, there is the ulcers in the mouth. At present there seems to be just one on the upper gum of the top jaw, but when the output was increased there was one on the inside of the left cheek and one at the front of my mouth on the inside of the bottom lip. I chewed on that one. Not smart.



I have many films like that one. She has incredible breasts though, doesn't she?

Then came that feeling of an anchor on the chest. It feels like having a 20 pound/ 10kg cat on your chest and you can't quite inflate it all the way. That's the pleurisy setting in. It hurts. It sucks.

Furiously, the joints begin to react. Mostly in my spine and my hips, though my feet and hands are not untouched. I know it's really bad when I cannot put pressure on my right foot, and I cannot move my fingers. They burn. It feels as though they have been in ice water or holding snowballs bare handed. They are red, angry and curved. They do not straighten.

Instead of taking it easy yesterday, Sophie and I walked up and down the street so she could play Mail Lady (or Post Mistress depending on how English you'd like to be). I basically crawled into the car and drove to get Matt. I could not move or use my hands after 8pm last night.

And yet, 4:30am was waiting for me. Voltaren does that.



I struggled to get down the stair this morning. Something about moving the hips and having to press onto the foot was just too much to mentally bare. The brain ticks along but the body is tired, weak.

The lungs feel stiff, like a towels line dried in the winter, crinkling with touch. It doesn't hurt so much as it feels difficult trying to inflate and deflate with ease. There's an overwhelming feeling of never getting enough oxygen in.

The bowels play nicer, but the joints are horrid. Sometimes that cholera feeling comes back and it's hard to wipe. This is why bidets were invented.



I don't know what to do. Do I ring my GP and make an urgent dr's appointment? No. I've done that in the past. All they do is up the steroid to 40mg with the intent to wean in 2 weeks. HELL on earth!! Do NOT do that to your ongoing steroid patients. It's horrrrrid. The headaches!

I could get another chest xray, but I'm tired of paying for them and being told, oh yes, look. You have large breasts and pleurisy. Apparently noting the size of the breasts is crucial. As if radiologists have a boob grading system. (Do they?)

I could go to the hospital and wait 18 hours for someone to see me at 2am and tell me they've had to break out the Merck manual and look it all up and...let's just raise your steroid and see how it goes. Do you want a steroid injection anywhere? The answer is oh G-d no. Those hurt so much!! I always ask, why are you looking in a book from the cupboard from 1992 and not using an app on your phone?

Wouldn't that actually make sense?! The 1992 book has 15 sentences on auto-inflammatory disorders. Period. Most are treated with steroids and immuno-suppressives.

For those of you googling to talk to patients, please advise your colleagues that you CAN get Merck and the Davis drug guide TOGETHER for android phones here. Yes, it is $80 US, but you can probably get it onto one platform in the ER/ED or office and you can share it around. Toss those old books and get informed. You didn't learn much at school about recurrent fevers and auto-inflammatory diseases, but there is a TON more info today. Also, please don't expect your patient to wean off steroids 1mg every 2 to 5 days. That's just cruel.



So, what do you do? If it's your first big flare since diagnosis, go see your doctor. If you're feeling really short of breath, go to the ED/ER. A steroid inhaler DOES work, despite what people may tell you about pleurisy. Anything to remotely increase your ability to get more air in does wonders for your brain.

No, it won't make it all go away, but even the placebo effect can be useful.

If you are hurting and are alone, call for help. You need to be around people in case you take a turn for the worse. Or, like so many times in my life, you need a bit of help 'cleaning' up.



Lemon and water, whether hot or cold, is good for you. If you can't stomach food, you still need to drink. Especially if you have a lot of output. A supplement like Spirulina is a good one to have on hand as it's got a lot of good without the weight of something like a multivitamin. A multi can make you feel really nauseous and ill.

Keep on top of the pain. That means you take the tablet BEFORE it feels like a knife is stabbing the joint. It also means using cold therapy to reduce the swelling. Less swelling, less overall pain, or so the theory goes. Again, if you cannot stay on top of the pain, GO IN. There is NO shame in admitting you hurt. Tell them if you haven't eaten so they will give you something to stop the vomiting from Morphine.

Secondary inflammation in organs is soooo common. Kidneys, stomach, pancreas, bowel, etc. Eyes are also very sensitive so stay inside or use dark sunglasses. Headache is so common. You may or may not have a red, flushed look to your face. And, you may or may not catch a fever on a thermometer, depending on how you're taking anti-inflammatory drugs.

If you have a high fever with muscle cramp, water, almonds and magnesium tablets can help. Muscle burning and muscle fatigue are common with little symptom control. Rest, cold packs and sleep help but there's little you can do tablet wise.

Gentle stretching can help the sore joints, but over-stretching can do far more damage. Try to protect the sore joints, but don't overcompensate or you'll find BOTH sides are hurting in different ways.

If you're flaring around your period, please note this. Some women DO find that flares are worse around their periods or ONLY occur around their periods.

If your eyes are sore, keep them moist.

And, of course, document everything. You will need this to take to your rheum.

I'm currently on a mental battleground. Do I up my steroid or do I suffer? If it lasts a few days, I'll survive. If this goes on for weeks, I will not be able to physically handle it. However, I do NOT want to wean. And, I don't feel like trialing Colchicine again. It does nothing. Stop suggesting it.

Colchicine works in a small percentage of people with TRAPs. Usually, however, a higher and more dangerous dose is needed. I found relief with 2.5mg a day. It also made me very, very sick. The muscle burning is very bad on it. The dehydration is awful.

0.5mcg is not worth the opening bowels or vomiting. You MAY be that small percent that respond favourably, but most likely you won't be and it's better to start a drug trial like that at the end of a flare and hope for flare prevention, not as a band-aid solution to a big problem.



Rest. Read. Think of it as a stay home holiday or vacation and not that you're succumbing to an illness that is ravaging your body and brain. The more normal I treat it, the more normal people respond. You can be TOO blase about it, and that's not good, but only you know when you are in dire straights and when laughing about poo is ok.

Leave heat packs to the back and spine or hips and keep the smaller joints cold. Make sure you eat something, even if it's a piece of dry toast or a slice of cheese. Be honest about the illness. If it's hurting, say it's hurting. Hiding or denying pain only makes it worse. And, if you're letting someone down today because you're out of action, apologize but do not internalise. Everyone has an off day. And most people aren't as sick as you are. They're shopping or seeing a movie.

Bigs hugs to you dear Trapper. Just surviving this flare is all you need to be focusing on. You CAN do it. In fact, you ARE.

Into the Bitterness

When I first got sick, people were awash with helpful hints and hopeful suggestions. Like I'd wake up well just as easily as I woke up sick. And when that didn't happen, I asked for a referral to a Rheumatologist.

Now, at the time, we were living in a small, wine growing community and my referral was for a doctor in a town over the hill, a 90 minutes drive each way. I held onto hope that walking into this man's office was going to change my life. I should have held onto hope that it would change for the better but I hadn't yet found out that a lot of doctors are total douches.

His office rang and said that to be seen by the public hospital, we'd have to wait 16 weeks whereas, to see him privately on a Wednesday afternoon, we would only have to wait 4 or 5 weeks. Who wouldn't take that deal?

So, in that time, we put our daughter into full-time daycare and my days as a busy mother were quashed. The house was so silent and my ability do anything was completely stalled. I remember getting off the couch and crawling to the toilet. I could get on and off by myself at this stage, but you know, that very private 'wiping' stage was still beyond me. So I learned the art of shift and shake -- no paper required. No shame either.

We were going into winter and I wore just a long leopard print robe. Getting clothes on and off was too hard, too depressing. Matt's grandmother had given us a very large insulated container with a spout on the top for keeping drinks cold in the summer. We found that it kept water hot and we used that as a means of making tea. I slid the cup under the spout, hit the button and the hot water came out. I could then wait for the tea to cool and drink it. And because I couldn't hold the cups, I drank lukewarm tea from a straw.

I spent a lot of time on the couch watching daytime tv and listening to ZM online. I hated silence. I couldn't stand silence. To this day I need some form of noise. Being in a silent house takes me right back to those early days of being unable to move and crying for help for everything.

Because I couldn't eat, I drank a lot of juice. I had gotten into juicing when breastfeeding Soph and going gluten free. So we dug out the juicer and I drank all sorts of combos. Anything I read online that suggested even the slightest hint of help, I drank it.

Asians greens, silverbeet, carrots, beetroot, it didn't matter. The most offending was brussel sprouts and the least offending is Bok Choi. Cucumbers juiced are a little slice of sluggy hell. Just don't go there.



That's purple cabbage and gluten free cookies.

Like I said, I tried it all.

Slowly as I began to relearn movements and train myself in movements that hurt less, I became mobile and apparently learned a funky gait that I've since had to work on. I called and called that Dr's office. I begged, I cried, I did anything I could to get in. But no dice.

Finally the day came. Full of hope and awe we ventured over the hill and into the Dr's office. It was an office in an aged care facility, with houses for the elderly surrounding it. I guess lots of old people need Rheumatologists.

When he introduced himself, I felt ok about it all. He was fairly young, with a 2 year old son and he seemed interested in the case. He was concerned that my ANA was negative, but that's ok he said. Some people never develop a positive ANA. I did some basic physical tests for him and it was agony trying to touch this or that.

Then he sat down and started to eat his lunch during my appointment. He said that because they had 'squeezed' me in that this was his lunch hour. Now I felt bad for being there. He told me it was a case of a mixed connective tissue disease to him and that he didn't much care for the 'Whys' or causes. He just liked to jump into treatment.

I was to continue the steroid at 40mg and start on the Plaquinel. Should clear it all right up.

And that was that. My 15 minutes were done, please pay $120 and take this script and begin taking the drugs.

It was really depressing. That was it!? Imagine waiting 16 weeks for THAT!!

So we drove home, filled the script and I took my first doses of Plaquinel. And within a few hours the side effects kicked in. In short, Plaquinel is quite effective against Malaria. It's also quite effective as a laxative. I am a sensitive sort, I'll admit that. Drugs hit me hard. And my stomach is so sensitive from the drugs that I puke easily. But at this stage in my drug trailing, I was still a strong gut virgin.

I was puking from dawn to dusk. My butt hurt so much. I called the office and begged for advice. Finally I got a phone call. Oh, that does happen to some people. Just stop taking it and I'll call in a script for Methotrexate.

All I knew of MTX, from my time investigating fertility, was that it was used as a cancer drug and to kill off ectopic pregnancies. What on earth was he doing giving it to ME?!

No way, I said. Over my dead body. I began to research the side effects, the risk to future fertility. I told him I'd see if I could tolerate the Plaquinel a bit longer and if not, well, I'd cross that bridge.

In my head I just kept counting down. Ok, another day sick means I'm closer to the end of this. If it's a flare, it'll stop and my life will go back to normal. Any day. Any day. Come on, any day. People were telling me that a positive attitude, visualzing being well, etc was going to make it all better.

And it was naive. I held this hope that I was going to get better and when I got worse or violently ill from a drug reaction, I felt lost. Wasn't I supposed to be getting better? What the hell?

And if I had negative thoughts I was reigned in by well meaning friends. No one knew that what I needed most of all was just unbiased, non-judgemental, silent support. Someone to hug me, to hold me, to let me cry and scream. Holding all of that in poisoned my perception of life.

The pain was so intense at times and uncontrolled pain is akin, in my mind, to torture. Any movement, any sudden slip from total control meant uncontrolled pain for hours. Doctors, some doctors at least, are very quick to give pain relief. Others won't. My GP, thankfully, was quite good but started me very slowly. At first we tried normal Ibuprofen. Then we tried Voltaren. I quickly showed intolerant to it and had my first bowel bleed and a bad case of gastritis. The steroid, it seemed, was making my body so sensitive.

So we tried codeine with and without Tramadol and finally worked up to Oxycodone. I was bloated up like a walrus. I began developing shakes in my arms and speech was very difficult. We rang the Rheum and demanded an emergency appt due to the shakes and the uncontrolled pain.

It took about 10 days but we got there. Again, it was lunchtime, this time was a pie and a very grumpy, inconsiderate demeanour. He was upset that the Plaquinel wasn't working, that my inflammation markers were all normal despite the obvious swelling and pain. He didn't like the neediness and my 'demands' on him. I am, he explained, the only Rheum for 3 regions and I am a very busy man.

I felt guilty, ashamed but also scared. Terrified of the shaking, the inability to form words. He told me it was odd that these symptoms were starting now, very similar to that of Parkinsons or MS. Oh, he said, looking at my chart. You've got a case of Prednisone poisoning! Just drop down to 20mg. You won't be able to tolerate 40mg very long.

How simple for him, how insane for me. That's it?! This drug is controlling my life!

He asked me why I hadn't started the MTX. Because if I was taking it, I wouldn't be hurting now, and silly girl, you should be doing what I'm telling you. But, I told him, what about the risks to fertility etc. He told me I shouldn't be worried about the future when today was such a problem.

He told me it was very strange that none of my tests had yielded an answer and perhaps it wasn't Lupus after all. It was very much like RA with the swellings and the negative ANA. But my RF was negative as was my Lupus factor. Hrrrrrm, he said, eating his pie, crumbs all over my notes. Yes. RA. Start the MTX and see your GP for pain. And, by the way, arthritis shouldn't hurt all the time. If it is, you're just feeling too much.

We left angry. Hopeless. Upset. I cried most of the way home. Why was no one listening to me? Treating me like an actual human being!? Is this the only doctor we can actually see? What. The. Hell.

I saw my GP and explained my pain and my worries and he just shrugged at the inability to offer another Rheum. We could try Christchurch he said and he began digging through a book of referrals. No, I said, it's too far to travel and I can't afford it.

So I filled the MTX script and waited. Waited for a day when the pain was so intense I questioned my sanity and took photos of the drug. How could something so innocent looking have the potential to kill cancer and render one infertile?







So I swallowed my six tablets and waited.

I didn't actually have many side effects to the drug. I had a weird burning sensation at times but nothing more. I also didn't have any effects that it was working. It takes a few weeks everyone kept saying. So, I kept taking the drug. And waiting.

Being sick and on the diagnosis roller coaster is a giant case of hurry up and wait. You do your bit, all you can, and you wait. For other people, for drugs, for chemical reactions, for signs of life and hope.

And nothing.

The pain was intense and horrible. I remember taking a red marker and having Matt put an X everywhere on my body it hurt. I walked into my GPs office and showed him. He just put his head in his hands and said he didn't know. He had started training as a Rheumatologist but stopped because it was simply too hard. It was that scenario all over again. He told me he'd give me the highest dose of Oxycodone he could prescribe and that he'd do some reading.

When I saw him a few days later, he told me he thought Still's Disease was the answer. It often has completely normal blood panels and doesn't respond to modifying drugs. We were progressing into Spring and he warned me not to take the sun lightly. Being on MTX was going to change everything.

I'm normally cold all the time anyways so long sleeves didn't bother me. I got a big hat and put sunscreen on my hands and my face.

One Sunday after the farmer's market we joined our osteo friend and his wife and daughters for lunch at a lovely little restaurant in the Mudhouse. I began to feel very faint and sick to my stomach. We were very aware of the sun but wanted me to get some air. I was sitting at a picnic table under a tree in the shade. But I didn't feel any better.

When we got home and I peeled my top off, I noticed I was sunburnt all over my chest. Despite wearing a winter top, in the shade, I had been burnt. We saw a pharamcist as he was still open and he gasped and said it was at least a second degree burn.

He packed it with gauze and gave us some sesame seed oil that was being used on Bali burn victims to reduce their scarring. It was horrible. I had to go to my GP's nurse and get the darn thing repacked. The pain was horrible but at least I didn't focus on my joints as much.

Because the risk of infection was so high I had to drop the steroid from 20mg and try to cope. It healed beautifully, thanks to the sesame seed oil, and it hasn't left much of a scar. I stopped taking the MTX and went up North with my daughter to stay with my MIL and FIL. Life was simply too hard dealing with the stress of Matt's work and being sick and guilt and coming up to my due date.


A Very Bloated Jen

I spent my due date in bed crying. What had happened to me?

I went to bed one night a very tired, busy mum of one and look at me now? Bloated, sore, unable to move much and filled with so much anger, hostility and infinite sadness. What had I done? Why was I being punished? Why did G-d hate me so much?

My MIL was very supportive but I think it was a very foreign concept for her, all of it. I don't think anyone had anything they could say to reach me. I had gone too far into myself and I hated the world. And I didn't care who I hurt in the meantime. No one's pain could match mine, so why did it matter if what I did upset them briefly?

I bought some Christmas angels from Trade Aid after my last Rheum appointment. I held onto them in bed, clutching them. Trying desperately to form some sense out of the events of the previous few months.

What happened? Was it ever going to get better? Just what the hell was going on?

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.