Looking on the bright side of things
(Photograph by Sam Rose – the town of Kookynie, WA)
It’s been a long time since I last blogged about my adrenal insufficiency and the last time that I did, I explained how my adrenals had made a slight improvement on my cortisol production with my morning blood cortisol being normal but my Synacthen test still being inadequate.
Like a drowning woman offered a lifeline, I took this news as a sign that I would recover and get off the steroids forever despite the little sensible voice inside of me whispering ‘Yeah right Samantha’, a voice that I told to shut up but one that like my Mother, was right all along – about everything.
*Well actually my Mum wasn’t always right, I do recall buying a knitted jumper-dress in the 80s and looked diabolical with my skinny legs looking like bits of string knotted at the knees, Mum said I ‘looked like a model’, she lied – I looked like a cauliflower with arms and legs wearing a jumper dress. But that’s OK, I forgive her*
So what has happened since I last posted on this subject? Well I had managed to get down to 3mgs of prednisone and have been for just under a year by reducing half a tablet every three months. Several (failed) attempts to get down to 2.5mgs were made and even going down by just 1/4 tablet, each attempt resulting in me bumping back up to 3mgs with my invisible tail between my legs while begging my body for forgiveness until I felt marginally better and would then try it again expecting a different result.
I cannot emphasize enough just how unpleasant it is to get below 5mgs of prednisone. The pain is intense, the tiredness is extreme, the brain fog is awful and whilst I would like to put it down to simple ‘rebound effects’ from steroid withdrawal, it is certainly not (in my case) rebound and there is nothing simple about it and trust me, I know the difference.
Living/existing on 3mgs was bad enough but I had been warned that ‘feeling rubbish’ might just be the price to pay for the reduction, but each and every attempt at reducing was having horrible effects on my body which had me wondering what kind of long-term damage I was doing to myself.
Admittedly I had been driving the ‘I must come off steroids’ train and pestering my doctors to take me off them. Each exasperated sigh would be followed with ‘Go down by 0.5mg and see me in three months’, I would leave the room with faux happiness and telling everyone ‘I am coming off those steroids!’ I would also last a couple of weeks, think that I had gone to hell in a basket and put them back up.
My Turning Point
‘How long have you been trying to get off 5mgs?’ I was asked one day.
Frowning in thought, I replied ‘About 3 years – maybe more’.
This person laughed and said ‘Are you not tired of it, the feeling crap and exhausted and all the symptoms that go with it? That’s a long time to feel shit’
Sounds of the penny dropping, of everything falling in to place, the feeling of embarrassment about how daft I had been for all these years. But most of all, it was the stark realization that I would not have treated a friend the way in which I had treated myself – both mentally and physically.
I remember taking a deep breath and nodding a few times ‘Yes, yes it is and yes I am tired of it’ I replied simply and that my friends, was my turning point and this happened about the second week in December (2016).
Having ignored my adrenal insufficiency for so long in the naive hope that it would go away, I would join support groups on Facebook and then delete my posts and remove myself from the groups because I believed that I did not belong there and that I would get better.
But now I had finally realized that the only way to move forward with this disease was to learn about it, get a plan of action and accept it. I didn’t have to like it but it was here to stay.
Because waking up feeling unwell, nauseous, dizzy, struggling with feelings of low blood sugar, complete inability to deal with any kind of stress, struggling to hold down a 40 hour week job with an hour a day traveling was hard enough let alone pretending it wasn’t happening.
I had to face up to it in order to accept it and it would be in my best interests to learn about what was happening to me because ultimately knowledge is power and I needed to learn how to manage my adrenal insufficiency because it sure wasn’t going anywhere.
What happened next?
I joined another support group – no really I did!
Recently I came across a UK-based support group and although I am in Australia, I found it to be most helpful with the answers to pretty much all of my questions. Feeling slightly embarrassed, I quickly paid my membership fee online before I could change my mind.
I printed out some of the information and the treatment/protocol guidelines, read it all several times and then took it to my specialist so she could see where I was getting my information from and that the literature was from a credible source (Dr Google is shit by the way, do not confuse Dr Google with a medical degree).
My specialist looked pretty relieved when I asked her if I could not only put my steroids up but could I also please try the Circadian Rhythm dosing that I had seen as shown in an article on the support group (written by an Endocrinologist). She knew that I had finally ‘got there’ with my acceptance of this disease and was pleased that I had joined a support group.
I can’t imagine how annoying I must have been requesting repeat Synacthen tests and pushing to wean off the steroids at a huge cost to my health. It was a clear case of doing the same actions on repeat and expecting a different outcome which by my own admission, must have been bloody frustrating to watch.
The specialist was happy with the information that I had printed out and even gave me an emergency letter to carry around with me in case I needed to go to hospital. Adrenal insufficiency be it primary or secondary is a disease that is misunderstood and I have heard of medical staff not even recognizing it when patients present in ED so the letter with adrenal crisis protocols can be a lifesaver.
I am now back up to 5mgs of preds divided into three doses. Now I know that some doctors believe prednisone should last 24 hours but it certainly doesn’t with me and I have split it up in to three times a day with my last dose being at 11pm.
I do appear to be metabolizing it very quickly and if I am resting up at home, then I can tolerate the feeling crappy between my afternoon and bedtime doses because I am not going anywhere and can afford to crash on the sofa and sob into my tea and feel sorry for myself. (The rest of the dosages can’t be changed either – believe me I have tried and I have tried HC as well in the early days, my body ate that up like a kid in a sweet shop)
The real test will be a busy day at work and ultimately a hectic working week including the journey to and from the office. Hot temperatures also affect me as does vigorous exercise, last week in Yoga I had to lie down because I felt dizzy trying to do the ‘Downward Dog’ but that is another story.
Stuff that I have learned along the way
What I have noticed is that if I am not busy then I notice the symptoms more which is both a good and a bad thing. It is a bad thing because you focus on it and feel worse for it but it is also a good thing because you get to know what makes you unwell and what your body needs to feel better. The secret to this is to find a healthy balance.
I have learned (today in fact) that being late with your steroids is not OK and that thinking that I would be fine missing my 1pm tablet because I was busy with housework, would not have repercussions. I was wrong, I felt crap and even two hours after taking the steroids, still felt dreadful.
I have learned that pickle juice is the drink of the God’s and can take away muscle cramps and headaches better than any painkiller. I have also learned that low cortisol symptoms are very similar so it pays to be in tune with yourself to learn the difference – perhaps reach for the pickle juice first.
I have learned that no matter what you say to people, there will always be those that think you can be cured by herbs, raw food, coconut water and other things to heal your leaky gut or adrenal issues but that’s OK, I just sit there and watch them talking and imagine myself popping steroids into their mouth every time it opens while shouting ‘Goal!’ each time I get one in.
But the most important thing I have realised is that whilst I admit to enjoy being a bit of a rebel, sometimes you just have to work with what you have got and make the best of things including (in my case) the ‘new normal’ when it comes to your level of health.
Which reminds me, I have a snazzy looking case for my Solu-Cortef, a shelf in the fridge with jars of pickle juice on it to rival that of any beer fridge, plus steroids in every room and a remarkable ability to tell people where to stick their leaky gut and herbal cures.
Denial – it is not just a river in Egypt, get past it and life starts to look better, well it has for me anyway.
Looking forward to what 2017 may bring – me and my boys!
(Photograph by Sam Rose)
If you have adrenal insufficiency either newly diagnosed or still struggling to come to terms with it, I totally recommend joining a support group. The link below is the one I am a member of, but there are others as well so find one that you feel comfortable with.
Support Group for Addisons/Adrenal Insufficiency
Happy New Year to you all.
Copyright Samantha Rose (C) January 2017
This post was great! Love your writing style and sense of humor.
I have AI and secretly admit that I too have dreams of being “cured” and can stop taking my HC.
I look forward to reading your futures post in 2017!
Wishing you a happy and healthy New Year!
Thank you for your kind words Jennifer. I must admit that the other day I felt OK at bedtime and didn’t take my 1mgs of preds, but that was a stupid thing to do as I woke up the next morning at 5am with stomach cramps, ache in my lower back and a feeling that I had woken up in a Cliff Richard concert.
Never again, but as you say – sometimes you just wonder if you are better.
p.s. I can’t seem to get the link to work on your post and would love to check out the group. Could you resend it? Many thanks!
My apologies, I had linked it wrong. It should work now xx
Excellent post, thank you for sharing. I think I’m still a little in that river myself, not taken on board the fact that I pretty much almost died last summer… there’s a blog post to come at some point on that, I’m sure. I’m also a member of Addisons.org, there is also a great and very supportive (but UK based) fb page.
Gemma I am still having my moments of where I question if I could manage on less steroids. But I am better than I was and still just taking one day at a time.
Stick with it my friend, it’s a hard road to walk but even some acceptance is better than none.xxx
Yes, indeed x
Thank you so much for sharing your experience.
My dog was actually recently diagnosed with Addison’s, and as wierd as it may sound, I feel like I kind of understand what it must be like for her now, as a result of reading this.. I feel like its obviously different for dogs (she doesn’t have to go to work, lol), but there are definitely parallels… And it explains A LOT of the seemingly random things I’ve observed about her lately. This understanding also allows me to be more empathetic when she’s stumbling; she just be SO dizzy in those moments!! Nothing but love & reassurance for her now… (I was struggling with being patient, not gonna lie… but I feel like I’m doing better as a result of reading this, so THANK YOU!!)
And the pickle juice idea?? This has actually helped her SO MUCH in recovering from her latest crash; I was using pedialyte before, but it didn’t “feel right” (I’m highly intuitive & trust those “feelings”) so I started doing more research… Pedialyte has potassium to go along with the sodium, so that wasn’t actually helping her very much; no wonder it didn’t feel right! She needed sodium, NOT potassium (which, BTW, is a perfectly valid “stuff it” point got those who say you should just eat a banana, right?)….
Thank you for sharing this experience. You are fully supported in doing what’s best for you, and I’m glad that my research led me here. This hasn’t been an easy journey for me to witness, especially since my dog can’t just start talking and TELL me what’s going on (dang it…), but this had really helped me. Pickle juice and all. 😁👍
Did your dog have the pickle juice? My sympathies are with any animal with Addisons disease, I can’t make myself heard to an Endo without being patronised – hence the reason I don’t have one so it must be hard for animals. Bless your dog though, in all the years I was a vet nurse I never saw a dog with Addisons, it must be just as hard for them.
Yes, she’s been taking the pickle juice daily. She doesn’t like it, but I administer via oral syringe, at least 20 mL per day (though sometimes 40 or even 60, depending on how she’s doing.)
It’s not easy. But its comforting that I found this information. She’s been 3 months without her percortin shot, as there were some financial issues initially. I was preparing for the worst, giving her pickle juice to help her as much as I could… And it’s been lasting this long?? She’s definitely not “all better” because she’s obviously feeling like crap sometimes, but I give her that pickle juice, and she’s back to playing tug-of-war with her sister again. One tough aspect of Addison’s is when she doesn’t want to eat…
But we’re managing well enough; she started going into crisis recently, but I tripled her pickle juice intake, and she stabilized the next day. I’m wondering if she was misdiagnosed, and that maybe she’s experiencing adrenal fatigue rather than full failure? But the ACHT came back absolutely positive for Addison’s. So.. Idk.
But that’s where I am as of now.
What steroids does the vet have her on?
I don’t know how it is for animals but we have to spread our steroids through the day, I have heard of one guy that stopped his steroids and coasted along for a bit but went to bed one day and didnt wake up.
When I was reducing my steroids at one point, I slowly – very slowly started to get really unwell. I think the body can take it for so long and then things start to happen. Her electrolytes could be out of whack as well. We are lucky as the steroids for me are only about $6.00 (AUD).
Loved this post. It was something I needed right now. I’ve been on the weaning roller coaster for two years……ever since I was first diagnosed. This has always been at my endo’s instruction, not mine and it has been pure hell. I recently saw a pituitary specialist who told me it was never going to work. My pituitary was never going to produce ACTH and my adrenals were never going to “wake up”. I’m still a bit in denial. I’m seeing my fifth new endo in two weeks and I’m praying she has more knowledge of AI than the others. I’m struggling to find a maintenance dose that will let me function most days. My doctors have been no help, as they always want to put me at 15 mg of HC a day. Right now I’m at 27.5. It’s certainly a rough and rocky road. Working on the acceptance and hope I get thee soon.
Yes I am still struggling, at the moment I am 2mgs on waking, 1mg at 11am, 1mg at 3pm and 1mg before bedtime (preds) and I stress dose with HC but heaven help me if I exercise or have a stressful day at work.