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A day in the life...

Entries in this blog

Monday...

I'm feeling Ok today apart from this continuous thirst I keep having. I am drinking so much and my mouth is always dry???   I received Sherry's beautiful bracelets through the post today which was a nice surprise. I bought one for Mum too which I am sure she will love.   The weekend was a quite one. I spent yesterday immersed in a James Patterson Book '4th of July' which has been one of those can't put it down books. Nearly finished it. Steve cooked a gorgeous dinner yesterday. Harry now has

diane177432

diane177432

Another day

Feeling a bit better today emotionally - my spirits are more up on yesterday. Tackling my ever growing ironing pile but having plenty of breaks in between as I feel so tired still. Its taking me ages but my arms and legs just ache.   Harry and I were mucking around with that Monkey email that Robin posted some time ago - Harry was in a fit of giggles and I can't get him off of it - Thanks Robin!!!   I've decided to wait to see my endo next Thursday. I know I am probably silly but I just hav

diane177432

diane177432

Good news about pre-eclampsia link

I received a very welcoming email this morning in response to an email I sent in April concerning a study I took part in back in 2001 when my son was born. It was looking into the genetics of Pre-eclampsia. Since being diagnosed with Cushings, I have always wondered about the link with Cushings and emailed a Doctor on the study to ask if any links had been found. Here is my post:   http://cushings.invisionzone.com/index.php?showtopic=16016   I really hope that further research could be made

diane177432

diane177432

Feeling rough again

Woke up with no energy, muscles are just aching so much. My lips feel numb. I head feels heavy. Had continuous headaches last night. I just feel like I need to lie down and sleep today, I just feel drained. My cheeks are burning too. I just don't feel right at all. Is this me getting better....??   I am glad now that I decided to defer my studies. I really don't know how I would have been able to manage them right now. To think that my Doctors recommended I would be fine after 8 weeks. i reall

diane177432

diane177432

Update - 1st post-op endo appointment

Came away feeling deflated. Numbers are looking OK. Thyroid is now borderline within range. Oestrogeon is still on the low side. The plan is for me to reduce my hydro to 25mg and if I am OK try to get down to 20mg. I am increasing my thyroxine to 125mcg - see if that helps with weight loss. Need to combat one thing at a time in order to eliminate what is happening, so will have to continue to be patient. If a reccurance occurs then radiotherapy is looking likely. Need to also get used to Novotra

diane177432

diane177432

Things are looking up...

I am feeling good...actually went out on my bike yesterday and Steve and I have promised to try and go out each evening. I can tell you, I hurt...soooooo much....my legs were burning and so was my chest and I ache today but boy was it worth it - I felt so good !! I would never have thought I could have ridden a bike a year and a half ago.   Steve and I are also planning a camping trip - never been camping in my life! but we have gone and got us a tent and are heading for the Norfolk coast fo

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

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

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

Feeling very tired with all this...

Right now, I feel absolutely exhausted. I head just aches with all the pressureof thinking too much, my cheeks are burning and I am getting black streaks before my eyes - probably the stress of it all. I wish I didn't have to wait another day to find out for sure if it is a reccurance. Just ben reading up on alot of others stories and articles. For months I guess I have been trying to ignore all of the things happening, putting it down to th eother hormones acting up, the way recovery happens...

Guest

Guest

R-Day!

Its 12:48 right now - no news as yet...just been to the Dr's as I was supposed to have my Hep B injection today but the nurse got her days mixed up and it is tomorrow not today - I feel absolutely exhausted having walked up there and back. I just feel rough, heads all over the place, all my limbs are aching and my eyes keeping goign in and out of focus - what the hell is going on...!!Had a call from the Learning Support officer at Uni today to find out if I need any special assistance. I didn't

Guest

Guest

What's been happening...

Well, been a while since I blogged. Tons has happened. Was diagnosed with reccurance, saw a registrar in the neurosurgery team, saw my endo, had a confirmed surgery date, had a cancelled surgery due to a cold, waiting for a new surgery date. Tumour has grown, cushings no where near as bad as last time - hoping this 2nd op will be my final...!!Started Uni, having great fun, learning so much in such a short time, made great friends already and feeling like this was the right move - had a couple of

Guest

Guest

Tuesday 14th Feb

Happy Valentines Day everyone! Steve sent me some beautiful flowers, roses, carnations, chrysanth's, lillies - I love gerba's but he couldn't get them - but they are beautiful.Still got a bit of cold left, seeing my GP later today to talk through everything with him. I saw him yesterday as Harry is still unwell and he asked me if anyone else had Cushings in the family. I mentioned I suspected my Mum may have it but she won't go for testing. It was nice, he asked how my nursing course was going.

Guest

Guest

Post-op - forgot what it was like

Well, I haven't posted on here in a while. Its been a kind of up and down few months...what's new. Things are starting to level out a bit now. I had surgery on the 28th February. Everything went OK and they think they have got out all of the residual tumour. I am doing a dex test on April 7th and have an MRI scheduled in June and see the Neuro team again in July, all of my appointments are scheduled. I was in hospital a wekk and enjoyed posting a daily report to the boards. It was incredibly bor

Guest

Guest

Not feeling great

I have been getting terrible tension in my head. Feels like someone has put my head in a vice but it doesn't hurt - it is just alot of pressure and numbing. The inside of my left nostril is incredibly sore too. Been getting the shakes a bit - think I am overdoing it a bit. Went into town yesterday as thought I should get out a bit, just to the library, bank and a couple of shops - it killed me. I was so physically exhausted when i got back I thought I was going to collapse. I keep getting worked

Guest

Guest

Getting on top of things

Finally managed to pull my finger out and get on top of all the paperwork. Have one thing to do though that for the life of me I cannot remember. Have a inkling about a letter I need to respond to but cannot locate it???? I have decided to give up thinking for a few hours probably do me the World of good!!I am feeling in better spirits today and have a bit more energy. Got a little bit sluggish this afternoon but no where as near as the past 2 days. I think going out for long lengths of time t

Guest

Guest

Testing time

Currently doing a 4-day Dex test. Started on Friday and will have a blood draw tomorrow (Tuesday) at 9am. Also doing 2 days of 24hr UFC collections. Felt really awful on the 1st day - awoke during the night shaking, couldn't regulate my body temperature, hot and cold extremes, sharp pains in a centralised area of the back of my head, feeling nauseous. Today I am feeling quite energised. I never know how to look at it, is this good, or is this a bad sign. Cushings can be so confusing whether you

diane177432

diane177432

Testing over - now feeling rough

Well, I went in for the blood draw on Tuesday and it took 5 attempts to find a vein that would co-operate - came away with all my arm swollen and bruised. It's very sore. yesterday, I was feeling so rough. I think its a combination of starting back on the hydrocortisone and changing insulin. Actrapid ceased production at the end of December and I had enough to see me through to now. I have been switched to Novotrapid which is a shorter acting insulin. I feel very rough. I was incredibly emotiona

diane177432

diane177432

A new day is dawning

Well, its been a proactive day in terms of my health and fitness. I started my new healthy eating regime today and did 20 minutes on the strider. It really tired me out. I am 8 weeks post-op tomorrow and I told myself that once my 8 weeks recovery is up, I will attempt to see if I can lose some weight. I am not that optimistic being on 30mg of hydro as it is bound to prevent weight loss, but even if a few pounds come off and I hit a plateau I will be happy. I don't like being this big and the la

diane177432

diane177432

Nursing and other things

I had a telephone discussion with the course leader today and she advised me to withdraw from my nursing course and reapply to the other University once I have my test results through and all is OK. I personally think this is the most sensible course of action although I would have liked a simple transfer, it would be easier this way. I feel very sad about not being able to work with my new friends but I guess life has a different deck of cards for me.   My cheeks are still burning red, I loo

diane177432

diane177432

Cycling

Just won a bid on E-bay for a bike. Hopefully will collect it at the weekend and I can start cycling to lose some pounds or build up the muscle. Steve and I have always fancied cycling at the weekends especially in the Summer as the countryside here is gorgeous. I am trying to bid for a bike for Harry as the one he has is too small. This is the first time I have bidded on e-bay - can get very addictive but I am making sure I have cut off points as I don't have alot of cash right now so trying to

diane177432

diane177432

I just want to climb back in bed...

It started out a fairly good morning, then Steve got a mood on and made a comment and there we are having a row in the car with Harry telling us to be quiet....not good....I felt so stressed, my head was pounding, I felt dizzy, I felt sick - I am not handling stress that well right now - reacting to situations. I hate it! I don't like arguing in front of Harry but both Steve and I got bees in our bonnets this morning and both went for the jugular. Was left with me not talking to him, dropped him

diane177432

diane177432

Silence...is golden

Its 7:30am right now and the house is so silent. Mum's doing overtime and was off to work at 6am and Steve and Harry are curled up in bed and it is so quiet, it is blissful.   As I said in yesterday's blog, come the evening and all was well again. Steve and I sorted out our differences and it turned out to be a lovely evening. The boys had dinner in the garden as it was a gorgeously warm evening and Mum and I shared a few laughs in the house.   Harry's appointment went OK, if a little rushed

diane177432

diane177432

Not feeling too good...

Its 2:45am and I have been up since 1:15 with a bad tummy. I feel so rough and my head is banging. Just trying to rehydrate myself and I am so tired, I just want to sleep, but the pains are so bad.   Took loads of photos on my new camera yesterday. Its my 1st digitial camera and I must admit when you see photos of yourself it gives a different perspective. I was saddened to see what I look like. I don't like how I look at all. I just want to be off of these steroids and free of this disease.

diane177432

diane177432

Ugghh....

I've woken up with such a bad headache, I feel so rough. It hurts across my forehead and behind my eyes. I'm trying to reduce my hydro by 5mg today as I was on 25mg around this time last time I was in recovery and personally I just feel I am on too much being on 30mg. My endo appointment was supposed to be at 6wks post-op but I am seeing my endo at 9-10weeks post-op. I can't wait that long....   Feeling very disheartened right now and need some serious cheering up. An old friend is visiting t

diane177432

diane177432

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