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About this blog

A day in the life...

Entries in this blog

A year on...

It's been a long time since I have posted here...nearly a year in fact. I have been absent from the site in an attempt to try and move on from Cushings and regain my life. I don't know if that will ever be possible although a year on I feel so much more better, more energy, and more like the old me again. The only trouble is my life is still ruled by my medication and just being a little late means I can feel just how reliant I am on them. I fine that sad. In the past year I have tried my hardes

diane177432

diane177432

It's snow joke

I started out last week with such optimism. Monday, I got up early and decided to make the walk to work, leave the car at home, be good, face the cold and feel refreshed. It is a 40 minute work to and from and so will be an hour and twenty minutes walk a day. It was a bit frosty and I had to watch where I walked but it was lovely to get out in the fresh air and it did feel refreshing as hoped. I was a bit shakey when I got to work and also in the last stretch walking home but it was good. Tuesda

diane177432

diane177432

New Year...another new start?

I didn't realise these blogs were still up and running...its been such a long time since I last posted something and so much has happened inbetween. 2009 has ben such a year of changes...it's been a big step for me personally and I seem to have come full circle in a lot of things in my life. Having Cushings has caused me so much loss and depression and anxiety of where life will take me me. Would I live to a ripe od age, would I see my son get married and have kids, would I ever get back to norm

diane177432

diane177432

Not much going on....

I had a clinic appointment yesterday and everything seems to be going OK so far. My Doctor is pleased with my progress. I have lost 4kgs since my last appointment in November which is encouraging, so to date I have lost 15lbs. Slowly getting there but at least every week the numbers on the scales are going down. I seem to feel more clear headed than past months. Perhaps its because Spring is nearly here andI can get out in the fresh air and do things. The change in weather has certainly lifted m

diane177432

diane177432

Getting angsty!

I had my last clinic appointment a week ago on the 18th November. Since then there have been a couple of changes. I increased my thyroxine from 125mcg to 150mcg as my thyroid was showing to be on the low side. It has been consistently OK since starting thyroxine and this is the first time in a long while that it has lowered. I have now switched from dexamethasone to hydrocortisone taking 10mg in the morning and 5mg in the afternoon (with an option 5mg later in the day should I need it, but I hav

diane177432

diane177432

Feeling rough...again

I am feeling very much out of sorts today. It seemes that any activity that makes me exert myself lately results in my body temperature rising and then I get upset tummy. I have also had some sinus headaches this morning and a general feeling of internal shakes and feeling rough. I really don;t know what is going on right now. Earlier this morning I had headaches on the right side from my sinus across my head and my right eye started to feel strange. I started to think, oh no not again - is the

diane177432

diane177432

Ups and downs yet again...

I have been feeling off sorts for a couple of weeks now. It was all going swimmingly for a while after starting the HRT. I had more energy and enthusiasm for life and then it all started to ebb off. I am having to take naps every day now. Granted I am up early in the morning but I am still getting very tired. I have lost all motivation and enthusiasm too. Maybe its the change of season, who knows? The HRT finally worked anyway and I had my first period in a very long time and am once again a wom

diane177432

diane177432

HRT - It's helping!

I started HRT three weeks ago to replace oestrogeon and I have to say it is making me feel less exhausted than I was. I do still get tired and have to have the odd nap or two or three but now I am physically able to do more which is great! Life is settling down now and I am starting to decorate the house. It was a sense of getting into some sort of routine as it was so weird not working. I am trying to do some research into Nelsons as I am still seriously considering the BLA but want to cover al

diane177432

diane177432

August/September 2008 Update

Its been a very up and down month or so. I've moved house, resigned and left my job, Harry started a new school, we've just come back from a week in Spain and after having my most recent clinic appointment with my endo, I am not moving forward. Its incredibly disheartening and as I am a person who has to have some sort of focus I am finding it incredibly difficult coming to terms with the fact that I may never be cured. I am running out of options big time. The next step is for me to start HRT a

diane177432

diane177432

Diabetic check-up

Today I had an appointment with my diabetic nurse. My cholestoral levels have risen from 5.8 in September to 7...I have to see the doctor tomorrow to discuss meds to reduce it and know I am bound to get a lecture on healthy eating.   My blood sugars are still on the high side, morning one being 9.8-10.6 - I am still on te dex which is not helping. I have put on a stone in weight since September 2007 - again not good. My potassium is low at 3.1. BP is OK at 130/80, thyroid within range, LFT's O

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diane177432

Update - June 2008

Its been a rough few weeks. Everything has gone out of whack and on a daily basis I am not sure what is going on - its very worrying. My diabetes is uncontrolled and my blood sugars are exceeding 10, not good for me. My weight just keeps going up - its so frustrating. The other day I put on half a stone over night!! My cheeks are still bright red and I just feel so tired all the time. Last week I had to take some time off of work because I felt like a truck had hit me and what caused me the most

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diane177432

Results of endo appointment 25/4/08

Day Curve cortisol results:   9:00 322 11:00 321 13:00 327 15:00 284 17:00 261   Triglyceride 33 HDL Colesterol 1.3 LDL 380 Ratio 5 HbA 1C 8.3 Potassium 3.9 (range 3.4-5) Sodium 141 Urea 5.3 Calcium 2.32 TSH 1.2 (range 0.3-5.5) Free 14.1 (range 11.5-22.7) LH 2.7 (range 2.4-8.4) FSH 4.8 Oest 85 (range 21-140)   Prolactin 484 IGF-1 25.7 ACTH 67 Glucose 10.2   The care plan as a result of my appointment with my endocrine consultant of 25th April 2008:

diane177432

diane177432

Feeling very alone in all this confusion

Well, I was officially diagnosed with a 2nd reccurrance a week ago and on Monday 8th October 2007 I go into hospital for 5 days as an in-patient for 'investigations'...on my most recent MRI it looks as if the recent pituitary appoplexy episode has caused my residual tumour to collapse into itself and has shrunk. By all intents and purposes after 2 surgeries and radiotherapy I should be heading for a cure but I am not and they are all baffled by it hence the tests. It could still be a pituitary s

diane177432

diane177432

Ups and downs

I've been getting very tired alot lately - the weight is still creeping up and its quite worrying. I am past my maximum ever weight. I start a diet and exercise class tomorrow - bought myself some new trainers at the weekend in preparation. I desperately want the appointment on Thursday to be positive - no sign of a Cushings return, but I am not holding my breath as I do believe it is back. It makes me incredibly sad. I just so wat a normal life again - I had it for a brief time recently and it

diane177432

diane177432

Funny sort of week

I've been feeling out of sorts for the past week and a half...really, really fed up really and not knowing why. I have been incredibly grumpy and feeling tired and a bit rough - I do worry that the signs of Cushings are starting to surface again but quickly put that thought to the back of my mind and try not to think too hard. My cheeks are so flushed right now and the hump is very prominent - its so frustrating. I seem to be running around like a headless chicken right now too - trying to do so

diane177432

diane177432

Update: September 2007

It's been a bit of a rollercoaster the past few months...getting to grips with juggling everything and the prospect of facing more testing. Work has been great and I am working with a very supportive group of people who have become good friends and have brought some much needed laughter and light relief back into my life. Despite still having loss of vision in my left eye and not feeling 100% I have managed to do the work and got a good appraisal.   I was a bit shocked when I was told my corti

diane177432

diane177432

NEW YEAR - NEW BEGINNINGS

Its been a while since I posted to my blog and so, so much has happened. I had my radiotherapy and had no real side effects apart from a bit of soreness. I have seen a remarkable improvement in my general health and well being. I have lost 2 stone in weight to date since August last year and I feel great. I am wearing smaller clothes and can actually start shopping in normal stores as I have hit that top end of the clothes size. Fabulous - still a long, long way to go, around 5 stone still to lo

diane177432

diane177432

November/December 2006 update

End of November/December has been taken up with my radiotherapy treatment - here is the link to a thread I made about my treatment:   http://cushings.invisionzone.com/index.php?showtopic=18634   Its now the end of December and a New Year is dawning...I am facing it like I have each previous year and that is with optimism and hope but there is a difference this time - my hope is stronger and I feel good about the year to come. I think it will be filled with new beginnings and new challenges t

diane177432

diane177432

October/November update 2006

This will have to be brief as I am just about to take little one to school. Life is so busy right now. We moved to our new apartment a couple of weeks ago and I am loving it there. It is very convenient for everything and it's our own place !! We are starting to make plans again and that is good.   I started a part time evening job at a local store four nights a week and fell so good to be back at work and amongst people. The customers are great and I get to have a good laugh and have made s

diane177432

diane177432

August 2006 update

OK, I have been falling behind on blogging so am trying to do at least one update at the end of the month.   Well August has been a mixed bag. The weather in the UK has been up and down but its still nice and warm. We finally made it camping - 1st time - it was brillian. We visited lots of historical places, the campsite was great, very clean and family friendly. camping itself was fun and I have never slept so well and it was good to hear the wildlife especially the owls hooting at night. We

diane177432

diane177432

July 2006 update

Its been a while since I have blogged, I haven't posted much either lately but hopefully will get back into the swing of things. Sorry to anyone who I haven't emailed as much to lately - I just needed a break from it all. I have done alot with my family and it is the first time in a long time that I have wanted to be out and about. The sunshine probably pays a big part. I am feeling more energetic lately and am able to do alot of things that were virtually impossible before. I am playing more wi

diane177432

diane177432

Zoo and MRI

No, no - I am not saying the hospital is a zoo...although sometimes feels like it...LOL! Harry and I went off to the zoo in the morning yesterday and spent a great day in the sunshine..and boy, was it hot - we saw loads of different animals. The zoo is a rescue centre too so many of the animals we saw were on the verge of extinction. Harry touched a python and got up close with a barn owl, a lizard and a guinea pig - OK not scary, but very cute. He had a good old time on the bouncy castle and pl

diane177432

diane177432

It's a scorcher in the UK!

If you want to act like a big kid and have the time of your life then I highly recommend a water gun...It is a gorgeous hot day today and Harry and I got one each today and have had a blast getting each other soaked in the garden. I remember having bags of fun with an empty washing up bottle when I was a kid - never had these fancy water guns in my day - god I feel, old...think I need to go out and get another soaking !!!!!   Its been a hot, hot, hot day today. Harry had his first speech the

diane177432

diane177432

Car Crash...what a day!

Yesterday was going to be a great day. I 'thought' I had an appointment with the hospitals eye clinic, so Steve, harry and I drove to Steves work. We were having a good old chat about our holiday, how we were looking forward to the break, the Sun was shining, it was a lovely day...then....CRASH!!!!! someone hit the back of our car....all of our boot was caved in, couldn;t shut it and the light was damaged. Our toe bar went through their radiator...nightmare! All of us went off to the A&E...H

diane177432

diane177432

Camping fever...

Well, it's official - I am a closet camper...I will receive my first tent tomorrow along with all the camping accessories and we will be off on our first camping trip in the coming weeks. I feel I am on the first step and will aspire to a caravan before too long...   Steve will be home soon and will be dragging me out for another bike ride. I am becoming a glutton for punishment...please assure me that I am not losing my sanity

diane177432

diane177432

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