the irony of the phrase “it’s all in your head”

This is a blog post I wrote almost three years ago (on an old blog that I didn’t continue writing on) in relation to a health diagnosis that I had just found out about.  I would love to say that was the end of the story, but in all reality it was somewhere in the middle. Here is the post as it was written back then, without any edits. The story of my journey to health and wellness will be continued and updated as part of this new essentially vibrant site…

 

2 April 2013.

I have been writing this post in my head for the last week.  Usually when I first get into bed I think of exactly what I will say, and how… or if I should just keep it to myself. Not tell anyone. When the house is quiet and the busy has stopped and I have no option but to think.

 

prolactinoma-diagnosis“It’s all in your head”

It has been 7 days since I had the phone call I was dreading.  With the news that, if I am completely honest, I was hoping I would hear.  Because some news is better than none.

Because when test after test after test brings no reason for the constant “stuff” going on you really want there to be a reason.

Because a reason means an end in sight.  Some way of moving forward and managing.  At the very least an explanation and the feeling that it wasn’t “all in my head”. Even though the irony of the fact that it possibly is, is not lost on me…

So, I shall rewind a bit, and keep it brief [not so keen on any dr google advice so I will purposely keep the detail light, till I know more!]

Years of feeling ‘bleh’ with no reason has kept me a regular at the pathology centre – monitoring blood levels and basically hitting brick wall after brick wall in terms of reasons why I often feel the way I do. About 6 weeks ago I requested a full set of specialised tests to compare to ones I had done the year prior.  I am a stubborn little so and so and I have never been willing to accept that there is no reason, so although I don’t understand much about the results, I figured I had to just keep persisting and one day, the puzzle pieces will fall together.  My doctor ordered the tests and there was one particular one that I don’t believe we have ever done before.  I have no idea what prompted him to order the test after all this time, but he did. As it turns out my prolactin results were high. Very high. I wanted to know what that meant immediately, but he convinced me to be patient and wait a month and re test.  it could possibly be a error, or a random spike.

Fast forward a month and the levels had gone up more. Doc had his action plan that he had explained to me the month before, so we went ahead and I booked in for a MRI of my brain last Monday.  Please don’t ever ask me what it is like to have your head strapped down and put in a metal tube with what seems like a random collection of jackhammers mixed in with beeping and buzzing right next to you head for a total of 45 mins.  I will quite possibly tell you, and I am pretty sure you would rather not know! Not moving AT ALL for 45 mins (as in – don’t even let your stomach move as you breathe – yikes!) it makes me cringe just remembering…

You have a Prolactinoma [Pituitory Adenoma]

So, the next day after ringing three times to check if they had the report [they didn’t] on the 4th time they did.  In my heart and in my stomach I knew before he even told me.  An adenoma (fancy name for a tumor) on my pituitory gland [which is at the base of the brain]. So it is called a pituitory microadenoma or a prolactinoma. Thankfully, non-cancerous… Doc had left all his other patients backing up in the waiting room and was preparing urgent referrals to a surgeon and an endocrinologist so that I could pick up and hand deliver them, and hopefully avoid waiting months and months for appointments.  Lucky for me the surgeon happened to be on his lunch break and advised that he need not be involved at this point in time due to the current (small) size of the tumor. Medication should [hopefully] help.

So, that is where I am at…

A week later, thinking I had three weeks to wait to see the specialist in her next avail emergency spot [much better than three months] but receiving a phone call today to say they had a cancellation and I go in tomorrow. I have no idea what lies ahead. We aren’t even sure if this adenoma is causing any symptoms, and it could be completely unrelated to what is going on health wise for me… So I could feel great soon, or just the same. But at least we have something to work on.

I am sharing this with all my lovely friends and followers today not for sympathy [and certainly not to freak anyone out], but because I made a decision that this blog would be real, and raw and honest. And so this, is where I am at. This is what is going on in my life this week…

I am freaking tired. and scared [though I keep pushing that one away].  Tired, did I say tired? I miss yoga, but I have ZERO energy, even for lovely bendy stretches. Even going to the shops, or listening to Liana talk and talk and talk some days is an effort… But in among all that I am relieved. Positive. Determined. A little excited… Excited that I now have a specialist who can hopefully help. We have a new direction to head in. We have a name for something that is going on – prolactinoma.

Everything will be ok!!!

 

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  • Tiphanie Stephens - oh Nay, I don’t know what to say, except I never believed it was “all in your head”, as I have seen you, and I know you and I know how real this is for you, and now I hope you can get some serious answers and some proper results and that it works, and you fell much much better sooner rather than later xxx.April 2, 2013 – 7:46 amReplyCancel

  • Nancy Morrison - renee! sending hugs and kisses and warm wishes for all things positive and wonderful for you. everything will be fine! I just can feel it! xoxoxApril 2, 2013 – 7:48 amReplyCancel

  • Brooke Aimé Mott - Amazing honesty, I admire it very much. Best of luck with it :)April 2, 2013 – 7:50 amReplyCancel

  • Hayley Justice - Posted on your blog but thinking of you! xApril 2, 2013 – 7:52 amReplyCancel

  • Alicia Nash - Such positive news that you finally may have some answers and potential solutions coming! Thinking of you in the ‘scary ‘ times but I know it will all be good! xxApril 2, 2013 – 8:26 amReplyCancel

  • Karen Hawley - Best wishes for a brighter more energetic future. Xxxx April 2, 2013 – 10:07 amReplyCancel

  • Hayley - Gosh Renee…how terribly frightening! I do hope it’s something that can be fixed with simple medication…I can just imagine all the scenarios that are going around in your head right now. But do try to let your mind be quiet and peaceful and let tomorrow bring what it will. It’s good to share…no-one should go through worry like this alone. Thinking of you and everything crossed for a good result tomorrow xxApril 2, 2013 – 6:51 pmReplyCancel

  • Bianca - Beautiful, beautiful girl, I had lost you on the big old world wide web for a bit and came back to find this.
    I will be sending you endless amounts of energy and strength but know you are an amazing, strong woman and will get through this better than most of us could. I think it’s such a great idea to share this. No one should have to go through worrying times on their own, you included. Sometimes feeling like people are thinking of you can give you the courage you need. You are amazing. Love to you and good luck for tomorrow. XxApril 2, 2013 – 7:30 pmReplyCancel

  • Katie O'Farrell - oh Renee…sending you bigs hugs and all my courage in case you need a little extra. your perspective is brave and beautiful and I know it’s going to guide you in the best way possible. you are in my thoughts and prayers : )April 2, 2013 – 8:48 pmReplyCancel

  • Bec - Renee, you beautiful, strong woman.
    So glad you are getting some answers, I just hope they are the answers to the problems you’ve been having.
    Thank you for sharing – I have been quietly wondering how you’ve been (sorry I haven’t voiced that).
    Loads of love for the journey ahead. Love heaps xxApril 2, 2013 – 9:34 pmReplyCancel

  • K - Hi Renee, don’t know you well enough to know quite the right thing to say, so sending you lots of positive thoughts and a hug. xx KApril 2, 2013 – 9:51 pmReplyCancel

  • Valerie - Oh Renee…I can totally relate with medical issues. Sorry to hear you have to go through any of this at all, but I also subscribe to the view that at least you have some kind of answer (not necessarily good, as it turned out) so you can move forward with a plan. I will be thinking of you as you meet with the doctor.
    Sending you all kinds of prayers, good vibes and healing energy to get through it with the amazing honesty and grace you do with everything else. xoApril 2, 2013 – 11:43 pmReplyCancel

  • Tania Raine - The fear of unknown is a horrible horrible thing. But, a few Christmases back a beautiful lady who I worked with was told that it would be her last Christmas, to get her things in order as she wouldn’t have much time as she had a brain tumour. But the long and the short of this I that she had what you are explaining and on re evaluation they discovered that!!!! The main things she had to do was dietary based and she Is a different woman!!! So I just wanted to share that and wish you all the best. I hope your outcome is just like hers! xxApril 3, 2013 – 7:19 amReplyCancel

  • Molly Wade - I’m late in catching up… I just want to send you all my love from Iowa and hoping you find clear answers and a workable solution at the end of all this poking about. XOXOApril 3, 2013 – 9:50 pmReplyCancel

  • Amy - Sweet Lady, Your persistence will pay off. Your positive attitude will keep you going. The sweet sweet girl in your life will lift your spirits. The love and support from all of the wonderful people in your life will keep you smiling. I am so sorry to hear that you are anticipating such a big day tomorrow and also so happy to hear that you will be making some progress with a specialist. Happy thoughts to you on this journey. I read your posts often and don’t comment as much as I should. Thinking of you in this time. xx AmyApril 12, 2013 – 12:43 amReplyCancel

  • kate - I’m reasonably new to your blog and your work and to you but I just want you to know that I hope everything works out ok! Love this little piece of your world here! Thinking of you xApril 12, 2013 – 12:49 amReplyCancel

  • 2 words :: ulcerative colitis [my diagnosis] » essentially vibrant - […] many [many] years of unexplained symptoms, a Prolactinoma / Pituitory Ademoma discovery that no one really knew what to do about, a worsening feeling of […]January 25, 2016 – 10:09 amReplyCancel

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