- Addison Disease
- Interviews
Moana's interview
How did all start?
I started with Diabetes. Approx 23 years ago. I was constantly dehydrated. Going to the toilet constantly. Lost a significant amount of weight very quickly without trying to and was very fatigued. Went to hospital feeling very unwell and was diagnosed there.
Next came Addison’s approx 7 years ago. It was progressive as I’d had symptoms for a good 3 years before diagnosis. I again lost a significant amount of weight. I went into an Addisonian Crisis. I had no strength to even take the lid off out coffee container. Couldn’t walk from my bedroom to the lounge, was literally crawling to get from one place to another within the house. Vomiting, diarrhoea. Hyper pigmentation. Severe fatigue. I ended up the the ED and was diagnosed pretty quickly on our straight on steroids. I was also diagnosed at the same time with Rheumatoid Arthritis. My Rheumatoid factor was through the roof and on top of the Addison’s symptoms I was also in a lot of pain from the RA. Symptoms for both reversed pretty quickly once I was on medication.
Next Cane Pure Red Cell Alplasia. My bone marrow doesn’t produce red blood cells. This was just over two years ago. I was pregnant at the time and had a high risk team looking after me because of the issues I already had. I was again, extremely fatigued but put it down to my pregnancy. Blood work came back and my Hb was 46. I was sent straight to the hospital and had multiple rounds of blood transfusions to get my Hb up until the finally found a medication that did the trick. I was also diagnosed with Hypothyroidism at the same time.
Do you already have a diagnosis? How long did it take you to get it?
All of my autoimmune diseases have been diagnosed. Living in NZ but having travelled a lot, I can say the healthcare system here is great. My diabetes was diagnosed very quickly. I lived in the UK for 9 years and was there when I started displaying textbook Addison’s symptoms. I was regularly seeing a team for my diabetes that includes endocrinologists and they completely missed my Addison’s even though I regularly complained about my textbook symptoms. We had luckily decided it was time to return home to New Zealand. I got very ill on the flight (due to my Addison’s) and ended up having to go to a hospital in the US on our stop over. The medical staff did not want to know my symptoms, were not interested in how I was feeling, asked me very few questions about my situation. Instead they only seemed to focus on what looked like a preset list of questions and as a result, could not determine what was wrong with me. They ordered a bunch of tests that also didn’t give them any answers because they were not looking at my symptoms. I left because I was getting no where, finally got home to New Zealand, ended up in the emergency department and was diagnosed pretty quickly and moved promptly to intensive care where they started my recovery.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have been treated by a range of medical specialists. I see an endocrinologist, rheumatologist, renal team, gastroenterologist, haematologist. They all talk amongst themselves and work together to ensure I am on the best treatment plan and best combination of drugs to what I have.
What has been the most useful thing for you so far?
Having such a great team looking after me and a great support network.
What have been your biggest difficulties?
Dealing with the fatigue
How has your social and family environment reacted? Have your social or family relationships changed?
My family and close friends have been great. They know my situation and are very good and letting me know if I seem a bit off - I don’t always notice it first.
What things have you stopped doing?
Not a lot. Do take tests more frequently though.
What do you think about the future?
I’m pretty positive. I know I’d have no future at all has my diseases not been diagnosed.
So far, which years have been the best years in your life? What have you done during them?
2016 was my best year so far. It was when my son was born.
What would you like to do if you didn’t have your condition?
There’s not much I haven’t done that I’d like to. I’ve travelled. I’m still pretty active.
If you had to describe your life in a sentence, what would it be?
Sometimes a little challenging but it’s great to be here.
Finally, what advice would you give to a person in a similar situation?
You will have hard days. Find that one thing that makes your life shine and focus on it. Make it your happy place. Make sure you take your meds. Know your body and your signs and react to them when things aren’t quick right. It’s great to talk to family and close friends about your situation but it is also very important that you find yourself one pecual person (or more if you wish) that you can truly open up to and vent to and be very honest with about what you are going through. And finally, it’s important that you know you don’t need to be a super hero. If you need to take a break, the. That’s what you need to do.
