The story of Jodie
So I had decided to have another baby. My first had been born premature with inter uterine growth restriction. I’d also suffered a thrombotic storm after she was born. With clots in my placenta, spleen, arm, lungs and a suspected stroke. People probably thought I was a bit mad. But I thought wth a high risk Ob dr. I’d be good.
My second daughter was also premature with IUGR. I’d developed pre eclampsia. But she was bigger than her sister and we spent much less time there. They really struggled with my blood pressure after her birth and for a good few weeks. I’d had to go to hospital for a bleed and my blood pressure was 200/120. They explained they had to get it down now or I’d have another stroke.
For quite a few months after her birth I’d been very tired. But put it down to having a toddler and a new baby. I was so tired. I’d have bad bad brain fog. Always at 5pm. That’s how it started. I’d feel very out of it. Almost like I was drunk. It was when I started to crave salt that I decided to see my Drs.
My Drs were dreadful. Which is an understatement. One dr at our surgery has the nickname dr death…..so I didn’t think I would g anywhere and I was right…..they said I was probably anaemic and to not worry. I went back and told them I felt worse. She said she felt I had reassurance seeking behaviours and had to have a emental health assessment which I reluctantly agreed too. But I knew that going back wouldn’t be helpful.
My health got worse and worse. Until I saw an out of hours dr. Who suggested I had the illness Addison’s disease….Addison’s disease is almost always fatal if left so he faxed my gp (yes the exact same one who wouldn’t listen) for an urgent referral to an endocrinologist. It took me 6 weeks to finally get up the courage to visit my gp. I even took my other half for support…but it was no good. She flat out refused to refer me, but did agree to test my cortisol. I remember crying so much and begging another gp surgery to take me on but I was out of bounds to all. I re,ember I felt like I was dying. Which sounds dramatic. But I was dying….and it was excruciatingly slowly.
The cortisol test came back low….yet I was STILL not referred. So they did another one. Which came back normal. I still refuse to believe this was my result. I’ve had about 20 now and they’ve never ever been normal. I still think my results got mixed up. But I kne that was the end of the road it’s my gp. She’d never even entertain the idea of listening to me and I was so upset.
I got worse and worse. I decided to try my luck with an out of hours dr again. Who again decided I could be having a crisis. And sent me to hospital. I remember hearing him shouting to the on call dr who was refusing to see me. He’s one dr I will always always want to thank. And I’ve since tried to find him. He was like guardian angel to me. He got me in. I went and saw a dr who was finally going to do the right tests that I needed to have done…..fantastic!!!!! He said come back in the morning and we will do it all. I had the “impending sense of doom” which is an actual medical term.
I arrived bright and early. Cortisol is delivered to our bodies using a circadian rhythm, so tests have to be done around 9am (this also explains why I got bad brain fog in the afternoon) only to be told they weren’t going to do any of the tests because I wasn’t sick enough. Nothing. But they would test my cortisol yet again. I was so so upset. I was back to square one. When I’d tried to say how unwell I felt it was taken back to..being depressed after having a baby. The results came back low once again. But he said nothing was wrong with me but he’d put in an urgent referral to the endo team. Which turned out to be 8 months away. (I’ve since found out he wrote my diagnosis was highly unlikely)
I decided to bite te bullet and paid to go privately. He organised all the tests on the nhs but did feel it probably wasn’t what I thought, but unfortunate he kept booking me for the wrong tests so it took many months before I was able to finally have the insulin tolerance test. Which isn’t done very often. Due to it being dangerous. But the test went fine. My endo said he’d write to me with the results. 2 days later I got a call to go in the next day and finally…….finally I was diagnosed!!!!
I was started on steroids. Which is a double edged sword. Although they save my life. They bring their own problems. It took me a long time to even feel a bit normal. But I’m so blessed…I can take my girls to the park. I can take them to the shops. I can lead a pretty normal life compare to some of my addisonian friends. And I’m so very very blessed. I’m soon also going to be started on growth hormone. My teeth are falling apart. I have vitamin deficiencies. But I’m alive. I’m breathing. I’m walking. I’m living and that’s all I ever wanted.
It’s been a real learning curve to work out when I needed to double dose or inject if it’s an emergency. But I’m getting there.
I just feel lucky…I feel incredibly lucky.
Thank you for reading