I’ve decided to post a brief medical update each month, along side my weekly posts. My aim is to give you an insight into the reality of my situation. As this is my first one, I’ve included the end of May into my June recap. This month was super busy with appointments so it will be a little longer than the months to come.
This months medical focus was the fainting/seizure episodes I had in April/May. On three separate occasions I became almost totally unresponsive, unable to move and very
lightheaded, one of the three times I actually lost consciousness completely for more than a few minutes. The hospital (wrongly) suspected low blood sugar so during May I had to pretend to be a diabetic for a week. I recorded everything I ate and took my blood sugar eight times a day at certain times before and after meals. This showed that my blood sugar was within the normal range. Fortunately I got to test my blood sugar during an episode again and it was normal, thus ruling it out as the cause.
I also wore a 24 hour heart monitor, pictured below. This showed nothing unusual.
I was referred to a local Endocrinologist who seemed quite puzzled by my condition. He was very thorough and ordered a range of bloods and urine samples to be completed. I have a follow up with him in July.
I also had an EEG and a heart echo/ultrasound, neither of which revealed anything abnormal.
I saw a cardiologist this month also, who was quite helpful. I do not believe my problems stem from my heart but I am happy to rule it out. He has referred me to a hospital to have a loop recorder implanted in my chest which will measure my heart beat for three years (diagram below). I am in the process of finding out the cost of this device before I can commit to the procedure. I will need a $400 consult with a different cardiologist before I find out the price though (don’t ask why, because I have no idea!) This particular doctor was really lovely and understanding of my situation. He was very encouraging and willing to help. If only all doctors were this great!
I had a very disheartening apt with my GP who basically told me I wasn’t sick because I can walk in and out of his office once a week and he has no medical ‘proof’ of my condition. I wasn’t going to see him again after this but his office called me a few weeks later and said he needed to see me. I am still contemplating finding another doctor but I don’t know if I want to start from the beginning again.
The bloods ordered by the endocrinologist revealed that I have a vitamin D deficiency so I have been taking 3000UI each day and trying to get at least 20 minutes exposure to the sun. This isn’t the cause of my health problems, but was caused by my condition. The pathology place messed up one of the samples, so I recently went back and got it redone. I should hear back soon if anything came up. The 24hr urine showed nothing.
I also managed to use my cane for the first time this month which was a huge step for me. I’ve still only used it the once but I feel so much better knowing I have the confidence to use it in public. I always carry it with me in my bag in case my legs start to give way but I never intended on using it permanently.
This month was huge for appointments, I think I had around 9 appointments over the four weeks.
June is also the first month of winter in Australia so I’ve figured out how my body responds to the cold – not very well.
The cold weather makes my pain so much worse, especially in my back, neck and legs. Some days the pain is through the roof and I can’t do anything. On a ‘good’ day, the pain is reduced to something like flu aches and pains, but a little bit worse. While the pain is much worse, my fatigue is better than it is in the hotter months.
Thanks for following my journey, I appreciate each of you who takes the time out to read this!