Welcome to my blog! You can start by getting to know a bit more About me or for a more detailed explanation of how I was diagnosed, have a read of my posts The Journey to Cushing's Syndrome and Part II the saga continues. Bienvenue sur mon blog! Vous pouvez commencez par decouvrir Mon Histoire avec Cushing's

Tuesday, 27 May 2014

Hormones, dating and other facts of life

Well the news since the last post regarding my health, is that I underwent the Insulin Stress Test (IST) and got my results. The IST is a test during which you are placed in hypoglycemia and blood samples are collected every 30 minutes for two hours, to check your body's hormonal response when placed under stress. It was a fairly unpleasant experience as anyone who has ever been hypoglycemic can relate to. The target was to get my blood glucose down to around 2.2 (Normal range 4-6) for the results to be valid. My blood sugar level dropped to 1.3!! No wonder I felt like shit!!

It appears that my cortisol levels lowered during the test, indicating that my body is unable to secrete cortisol in times of stress. This means that I still have cortisol deficiency and should keep taking my hydro (good news actually!). The report also states that there was no growth hormone secretion throughout the test and in fact, we already knew that my levels were low if not inexistent. What this means is that I will probably have to discuss growth hormone replacement as this might help alleviate the fatigue I've been feeling. Growth hormone is responsible for distribution of fat and brain functioning among other things. So don't think it's only important in kids, we ALL need it.

Tuesday, 8 April 2014

Awareness day

I can't believe how long it's been since I've posted anything on my blog! I'm sorry to those who actually read it, as I have not been updating you with my progress. In a way, it's kind of a "No news, good news" situation, but that's no excuse...

After the traumatic and terrifying experience of the emergency surgery to repair my CSF leak, I have slowly but steadily been improving. I think I can point towards Christmas and New Year as really being the turning points for me, energy-wise. Since the beginning of the year I have rediscovered myself and my enthusiasm for life, in large part due to the fact that I have felt much better in myself. That isn't to say that I am back to my pre-Cushing's state, but the reality is that might never happen. However, I have been losing weight and been able to go to the gym a couple of times a week. I have also started to accept myself and love myself that little bit more. I don't think even my own best friends and family realise how low my self-esteem had gotten....

Another major difference is that I have actually started feeling good enough about myself that I have started to venture into the world of dating! Now I'll be completely honest, it's been tough. A lot of shit men who didn't appreciate me and one great guy who broke my heart. But I guess I should focus on the positives and the fact that I am even dating, full stop, is pretty amazing in itself. For years I had not felt beautiful or even worthy enough of someone's attention, let alone love. The last few dating experiences haven't exactly disproved this belief but what's important is that I took the risk. I opened up and allowed myself to get close to someone and that's something which I haven't been able to do in years...

On this awareness day, I am reminded of how impactful Cushing's has been on my life. To say it has completely taken it over is a bit of an overstatement but the truth is that it has affected me in many ways: physically, psychologically and emotionally. It has affected my relationships with others (or lack thereof) and my ability to fulfil my aspirations. BUT, it has also given me an inner strength and determination I never knew I had, taught me serious life lessons and made me appreciate all that I have in life. I have lost a lot of things along the way: friends, (body) confidence, faith in God, the ability to bear children and my entire pituitary gland, but I'm still here! "To live is to suffer, to survive is to find some meaning in the suffering." - Nietzsche

Nietzsche was right! I have gotten to know this philosopher fairly well thanks to my course and I believe he sums it up beautifully for me:

Amor fati (love your fate): this is the very core of my being—And as to my prolonged illness, do I not owe much more to it than I owe to my health? To it I owe a higher kind of health, a sort of health which grows stronger under everything that does not actually kill it!—To it, I owe even my philosophy.… Only great suffering is the ultimate emancipator of spirit, for it teaches one that vast suspiciousness which makes an X out of every U, a genuine and proper X, i.e., the antepenultimate letter. Only great suffering; that great suffering, under which we seem to be over a fire of greenwood, the suffering that takes its time—forces us philosophers to descend into our nethermost depths, and to let go of all trustfulness, all good-nature, all whittling-down, all mildness, all mediocrity,—on which things we had formerly staked our humanity.”
― Friedrich Nietzsche

Monday, 7 October 2013

Not all leaks are enlightening....

SOOOOOO much has happened in last few weeks I barely know where to start! I guess the logical place is to start from the beginning.
As you may recall from my last post, I had my fourth neurosurgery on the 16th of September. This time I had a complete hypophysectomy (they removed ALL of my pituitary gland). It was tough! I had a real hard time coming out of the anesthesia, feeling very rough and even throwing up several times. But thanks to a strong cocktail of painkillers and anti nausea meds, I was feeling "normal" within a few days. On the 20th of September, exactly 3 years since my first neurosurgery, my specialist nurse told me that my cortisol results had finally come back low enough to consider me cured. I was over the moon!!
By Saturday I was home and I thought this was the beginning of my road to recovery. Boy was I wrong...