Oh the joys! Just got a letter from my Endo saying 'we will review you in next clinic'. My first Dex test she said was boarder line at cortisol level 50.. but my last one they have put 'perfectly normal with a cortisol level of less than 18'. So it would seem we are back to the drawing board and I have to wait til the 31st May to speak to anyone again to see what can happen next!
Well, decided I am going to put my thoughts in a letter to see if at least I can stop them from saying "we are not going to test any more.." which I know my Doc said she would not stop testing till they found something, if not Cushings then something else... but its my biggest feat that they will turn tail and say "you are just you, so get back to slimming world!"
After yesterdays emotional outburst (sorry), today I found that my symptoms just seems to feel so much worse. My arms ached while trying to write a flipchart board, I felt bloated, legs pitted, so tired I felt like I had been up all night partying rather than curled up in bed reading a book, really blaaah and kinda lonely with the feelings... and in pops someone who has been through what I am going through, got diagnosed and has had the operation!! This is the 3rd time, when I have been having a wobble about the frustration of it all that she has popped into the office for something or other. (the first time I suddenly told her all about how I was feeling I didn't know she had had Cushings!) I can't thank her enough because even though it was only a 10 minute chat and we did chuckle about things, i know she understands and is not just 'nodding and smiling but not really taking it seriously.' She made a joke about my 'healthy glow' and it made me smile because I knew she really did understand. In my mind it is another demonstration about how support is so important for each person and sharing and talking is a huge savior!!
Its been a strange old day and I have had thoughts going round and round my head, so thought perhaps if I wrote them down then maybe that would help. Then I wondered where to write them, and here was the first place that came to my mind as I know that though I am writing this for myself, if anyone else reads it, I know they will understand!
I realised this morning that this time last year I told a good friend to go away and leave me alone. I thought he was not being a good friend, though really it was more to do with other people involved! Infact I told them all to go away, and so they did - my apology for my outburst did not help. This time last week I fell out with my step mum. My Step mum has been so supportive of me over the years, and though she has had her own illness issues has always been there... until recently, when I put on a lot of weight that I lost with one of the severe low calorie diets. I have been saying for many many years that I don't over eat, but I think she feels I have proven that I do because I have put on all the weight i lost very quickly. She commented that she was "glad I am going to an Endocrinologist, then I can get this idea out of my head and we can go back to slimming world." And this comment has just shut me down. Yes I did loose on slimming world, but only so far and then I stick.. always the same I get so far then I stick... I seem to end up putting a barrier up and feeling all defensive, which then goes into which ever conversation i qm having. I can feel myself backing away from seeing her, when before she has always been my mum!!... I can't stop myself from doing it and I get so very nervous at the thought of meeting at the moment.
I think really today has just been a sad day, but my wrists ache, my ancles ache, I am so very tired but still awake, my stretch marks have gone back to showing purple when with Bio-oil I felt they were now silver so these are new ones which is so sad. I feel like a wreck but the emotional side has dragged me down where before I am pretty boyant about things Right now I am even sad at myself because I have an Endo who believes I have cushings, but my body keeps giving boarder line results... and I guess waiting for the next set of results to come back is playing on my mind!
Ya see, I am just venting my spleen and feeling all grumpy and sad! I have to admit though that writing it down has helped because it has made me see how random the problems are today and that tomorrow will be another day! Thanks for the writing space! Its helped!