On... living with Multiple Hereditary Exostoses

I have a condition, it's called Multiple Hereditary Exostoses. You won't be able to tell if you've just met me... in fact I don't think many of my friends know. We don't talk about it much.

I think, I'm blessed to be relatively okay. In severe conditions, some might have stunted growth (okay, maybe I'm stunted...), major deformities, loss of movement, or obstructions to the lungs, urinary tract, GI tract, and sometimes even the brains.

Exostoses are the bumps you draw at the end of each bone, assuming you draw a bone like a normal person would -



Till today (aged 24) (crap, am I already 24?) I haven't had a bone scan done. It scares me a little not knowing where my exostoses are, my family doesn't find it necessary. It scares me also, because these tumors have a chance of becoming cancerous, and I have no way of tracking their growth. From "feeling" (and masseuses...), I know I have one on my left wrist and shoulder, one on my right fibula (I think), one on my left tibial (also guessing), and one on my rib which I can't seem to feel anymore. Some feel like they have shrank.

Limitations in movement? Sitting on my butt hurts after a while, I can't sit cross legged or kneel down, my legs feel fatigued really quickly. In rare cases where I have to put my body in weird angles, exostoses can cause sharp pains to tendons or result in locked joints... and when that happens, thankfully only once or twice in my life, I have to keep moving around in pain to try to "unlock" them. It might surprise you that I dance so much - I learn to bear with the pain, and avoid positions I know will cause problems.

The only treatments available are surgery, pain management and therapy. My brother chose to go through multiple surgeries because his exostoses were causing him pain and impaired movement. What happens is that they make an incision and saw the extra bits of your bones off. This left him with unsightly scars and permanent nerve damage. Needles scare me and I've never even been admitted to a hospital, so surgery's out of the question for me. My condition's bearable, so I don't see a need for surgery either. Mum's the one we inherited the condition from. Within her family, the men seem to get it worse.

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Writing this because I haven't seen much support for or awareness about MHE in Asia... if you're someone with this condition looking for answers, feel free to reach me. You're not alone!

I will lose weight.

So yeah. I think I will start jogging and paying more attention to my diet because more than one person has been telling me I look "round". The nice ones say it's alright, 'cos I look cute.

But seriously.

This is gonna be hard for me because I just love eating. Cut down on carbs, they say. I also hate math, so if I have to count my carbs, I will be depressed. I guess, keep off the sugars and the starches, eat more veg, fruits and grilled meat. The problem? It's a major inconvenience to find healthy food in Singapore, and when you do, it'll cost you. Also, I'd rather spend the time in the morning sleeping than losing sleep to prepare healthy take-aways.

I also hate jogging. I never know what to think about, so I'll start thinking about my breathing, and pacing, and then because I have an attention span of a housefly, I start getting really really bored after like, 5m...

Gym memberships? Bloody costly.

Writing this down so I'm more likely to commit to it. I WILL WORK SOMETHING OUT. and buy a weighing scale tomorrow.

ganbatte to me.

{edit: next day update: bought a weighing scale. i actually lost weight from the last time i weighed myself. went on a diet anyway - didn't eat carbs today, but had really bad hunger pangs :<}

"I have been coughing for weeks"

Dear friends who have been suffering this unfortunate plight,



I would like to share my experience and knowledge of this terrible many-month-cough, which I have been diagnosed with 3 times already.

• Have you been coughing for a really long time?


• Do you feel lethargic all the time?


• When you cough, do you cough non-stop until you have to gasp for air?


• Does it keep you up at night?

If you answered yes to all the above questions, you might just have mycoplasma pneumoniae. which can cause pneumonia, though it's possible to be infected with Mycoplasma pneumoniae without necessarily developing pneumonia.

(source)

Common symptoms include the following:

• Chest pain


• Chills


• Cough, usually dry and not bloody


• Excessive sweating


• Fever (may be high)


• Headache


• Sore throat

Less common symptoms include:

• Ear pain


• Eye pain or soreness


• Muscle aches and joint stiffness


• Neck lump


• Rapid breathing


• Skin lesions or rash

(source)

Mycoplasma pneumoniae is also known as walking pneumonia because you can still go about your daily activities while you have it. And usually you're not feeling so bad, till you feel like you have to take MC, so you go around doing your normal thang, with your normal routine. AND THIS IS VERY IRRESPONGSIBER OF YEW, because mycoplasma pneumoniae is rather infectious, especially if you're coughing and spewing your secretions everywhere.

So go forth and tell your loctor, pls check if I have mycoplasma. (ps it's a bacteria and not a virus) He/she will run an xray of your lungs or a blood test to determine this, and once done and tested positive, he/she will diagnose Klacid or Azithromycin which are antibiotics. Azithromycin will cost a little more, but please choose that over Klacid because Klacid gave me an awful reflux and you taste bitter shit in your mouth every day. :< not cool not cool.

Also please take more Vitamin C and lots of water and have lots of rest and stay away from fried stuff and cover your mouth when you cough.

It is also possible that you recover from mycoplasma without medication, but this will take you a month or two, of which, you will probably lead a miserable existence.

That is all I have to say. Jiayou, all you coughers and wheezers. May you rid yourself of mycoplasma pneumoniae soon.