“Living your disease”…sometimes its not a choice

Big week again and I’m feeling more than a little frustrated. I again have recieved the advice not to ‘live my disease’.
Well, maybe your health doesn’t impact on your time as much as mine does.  While I understand the advice, and I’ve known many people who turn their diagnoses into something larger than life when that isn’t necessary, or necessarily very healthy, I don’t have a lot of choice.  My four upright hours a day are often spent getting labs, scans and visiting doctors.
Yesterday I had to see my GP for my regular monthly pain medication appointment. I also had to bring Gamerboy because his hypermobility is severe. His hip subluxes several times a day. Its not painful (usually, sometimes it is ‘pretty bad’ which coming from him means excruciating). I’m sure he has EDS and I want him diagnosed so that he doesn’t face a life of sceptical doctors referring him on in an endless loop. I know how that goes. He needs physiotheraply because he wants to run again, to help deal with his anxiety and depression. He loves to run and he’s very good at it. He needs a physio to help strengthen the ligaments around his joints so that they don’t subluxe mutliple times a day.
The Chicklet is also hypermobile and I am too. I have hyperextending joints and lax connective tissue. Our versions are far milder than Gamerboys though. EDS is genetic and its about far more than hypermobile joints. Diagnosis takes time, and I’m slowly learning. I seem to never have the time to research.
I also had to get many tubes of blood taken, for my upcoming review with my endocrinologist.
Today I had a CT on my TMJs. I have had a jaw flare for almost two weeks now. It hurts. My tinnitus is worse, and by lunchtime I have a spiltting headache radiating from the jaw. The radiologist said the jaw ‘isn’t too bad for someone with RA’ which is cheering. There’s some joint space narrowing and degeneration of the disc. I’m not that familiar with the anatomy of the TMJ. He injected the left side, because its more inflammed, telling me to come back in a few days if the left side treatment works. The left side already feels much better, because of the local anesthetic.
Tomorrow I have more x-rays – pelvis, thoracic and lumbar spine. My endocriniologist is looking for sclerosis, I’m also curious as to how my hips are looking these days, given that their a major source of daily pain and the arthrtiis was considered only ‘moderate’ a year ago. I also need bone density scans, because my bones are incredibly dense. SEVEN standard deviations about normal, which is definatley a disease process in action, and puts me at a very high risk of a serious fracture. I have found one other blogger who has a rare bone disease, and she had her first fracture at 48, which is my age now. It was a catastrophic fracture for her, and she has been helping me work through the medical jargon. Her team have called her disease something akin to osteopetrosis, though it is much more severe than the usual adult form, but less severe than the juvenile form, which is fatal. I really need to message her, and talk to her some more.  It  has taken many years to find a doctor who is prepared to get to the bottom of this, because it is so rare a finding. My endo is kindof doing it under duress. she doesn’t want to, but she is clealry too kind a person to turn me away.  It’s a serious thing though, it would be stupid to ignore it. I’ve had several bone density scans, and they all come out the same.  It’s been checked and re-checked and I’m a circus act for the radiographers when I come in to get scanned.  Tomorrow will probalby be the same, they all want to double check that its not a mistake. No mistake.
On thursday I see my gastroenterologist, to follow up from the gastroscopy and diatiation I had two weeks ago. I will get the results of my biopsies and I’m hoping they are clear of eosinophils. Which would mean that wheat is the major allergen and a wheat free, low grain, low dairy diet is acceptable. I still have daily stomach pain. I am testing individual foods to see what I can eat. I have a list of about ten things that are ‘safe’ right now. I want to know what is causing the pain, because sometimes it doesnt’ seem to be food related at all.
Friday I have no appointments! Yay! Appointments are exhausting. After each appointment I need to rest for at least an hour. In between I need to run kids back and forth from school. And then the Chicklet to and from work. This is why I moved here, so that I CAN do this. Gamerboy can’t do buses, he just can’t. My time is far better spent trying to teach him to drive, which I am doing. But it challenging, because he refuses to learn to drive. THAT is a skill he will need, however. CAtching a bus is not. I have to pick my battles, and pick the battles that I can win and that are worth winning. You might pick different battles, but I know my kids quite well..
I haven’t done any work for CreakyJoints and there is heaps I want to do! I have been neglecting the blog, because I just am not getting around to it.
My life is busy.  Not in the sense that ‘normal’ people understand ‘busy’ to mean – work, career, family. But just staying upright and maintaining my health takes a lot of time and effort. I don’t choose for it to be this way, I don’t want it, but I need treatments, scans, labs…its endless. My life does revolve around my health or lack of. That isn’t the same as ‘living your disease’  though. I’d love to be able to spend less time thinking about illness, but I can’t afford to neglect my care or the care of my kids.
So I will continue to be frustrated by the amount of time in my already very time poor life I spend in pursuit of medical help. I have no choice.


  1. I don’t know if Botox is covered by the Australian Public Health System (i’m In America), but you may want to try it if it is.
    It’s not covered by my insurance here, but I get such benefit from it that it’s worth it to pay for it myself. I know that money is tight. Just a thought. If women are as vain in Australia as in America, you can even find a MedSpa to do it (cheaper that way) and just ask if they know where to inject to relieve TMJ pain. Or see if a Pain Management Specialist will do it for you.

    • Thanks Adriene, botox is something I will certainly look into! I’m pretty sure its available here, just not sure who does it locally, and how to access it. I will start looking! 🙂


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