Wednesday, September 21, 2011

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.


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