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Blog Entries posted by diane177432

  1. diane177432
    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 last time I was this big was just before my 1st op and I had full-blown cushings then.
    I am getting anxious about whether I am in remission or not. I hope I am. My cheeks constantly burn and any cushingoid sign gives me cause to worry. I am usually perceptive about these things, much to my own annoyance!!
    I finally started doing some reseach on UK Endocrine clinics today. It will take some time to make a listing of GP surgeries as there are so many practices. I guess if I can tackle it one county at a time. The cost of a stamp isn't much to get word out there and if it helps just one person, it will be worth it. I have time on my hands until I go back to Uni. Hoping they'll agree to me defering to September. I need to call the course leader this week to discuss my options. If not, I guess I will have to re-apply and start over but I am willing to do that.
  2. diane177432
    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 hardest to lose weight however I have just managed to maintain the 3 stone loss. I am optimistic however that I will lose more weight this year. I want to lose another 3 stone before my 40th birthday in June 2012 and so have 18 months to do it in. Life in cambridge has done me and my family the world of good and we are getting back on our feet. I have progressed in my career and have now regained everything that I lost. I am back working as a picture editor again. I worked so hard to get here but I have done sit nd I am proud of my achievements. Harry turned 9yrs in October and I am so proud of my baby boy. He has been through so much and has really just known a Mum that is unwell but with my energy levels back I can play with him lots more and be a bigger part of his life.
    For all of you out there thinking there is no light at the end of the tunnel...I am proof that there is. Despite the fact I will be on medication all my life, my disease is manageable and I am nearly back to where I was before I was diagnosed with Cushings. Never give up hope...
  3. diane177432
    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 have no energy right now and am forcing myself to do simple house chores. To get Harry ready and walk up to the Doctors just seems a mammoth task right now.
    Right now I do feel like the days are going by so quickly and I am not achieving much. Oh no, I better stop thinking or I'll get myself back in the doldrums again....
  4. diane177432
    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 went to Tintern Abbey, Raglan Castle, Symonds Yat Rock as well as beautiful walks in the Forest of Dean and Wye Valley as well as visiting King Arthurs caves. Took tons of photo's.
    On a health note. I am now weaned down to 10mg of hydro although my Doc says that I could come off of it as I have suppressed on the Dex and the synacthen tests looked good too!! Horrah!! Only problem is that on my post-op MRI, it is still showing something there, they are still not sure if it is residual tumour or post-op scar tissue - the same dillema they had after my last op. Soooooo....it looks like it is radiotherapy for me then. I should see the oncologist in the next few weeks and then hopefully treatment will happen before the end of the year. Five times a day, five times a week for yes you guessed it five weeks. Steve has spoken to one of the pathologists and oncologists he works with and they have both reassured him that this probably the best route to take. They said I should ask the oncologist as many questions as possible and the questions I have thanks to the wonderful support I have received here, are very good questions. So I wait with anticipation.
    Home life has been up and down but I am trying to deal with it the best way I can. My relationship with Steve has gone from strength to strength but Mum is always down and continuously nags or picks holes. Its a shame as the times she does pull herself out of it are really good times and we laugh alot. I just wish sometimes she could put her past behind her and live for tomorrow. Being ill has really taught me that lesson. Life is too precious.
    Harry starts big school in a weeks time. I have just bought all of his school uniform and he looks so cute. God, I am going to miss him so much and I am sure it will be sooooo quiet without him chattering away. I get so sentimental over this!! My little boy is growing up so fast.
    Well, it's September the 1st and I hope its a good one for everyone especially Liz who has a very important appointment coming up very soon.
  5. diane177432
    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 and I will hopefully begin oestrogeon replacements in the coming week or so. The next step arfter that is to go through testing for GH again. They feel I will meet the eligibility criteria but the fact it is taking sooooooo long to get on the stuff is mind boggling. My endo and I first discussed GH a couple of years if not more ago!!! I have always believed it was a major factor and why I feel so exhausted all the time.
    Right now I am seriously contemplating a BLA. MY endo, neuro and Prof Grossman at Barts advise against it. They are of the belief that something will happen 2yrs after my radiotherapy - which is this November and having my adrenals is suppressing the growth of the pituitary tumour. Right now I am losing hope and just want to see some improvement. On the ketaconazole and the small amount of dex I am taking, I am able to function normally although I do get tired and weak every day, I am not doing too bad and can carry out normal daily duties like housework, shopping etc. However, its not ideal. I have even lost 5 lbs in weight. Not being a good swimmer and rather nervous in the water I pushed myself to try and swim a few widths on holiday and am proud to say I did it. My muscles killed me but I did it. I also walked alot too. I hope to carry on now I am back and see if I can lose some weight. I am currently 19 stone 3 lbs, the heaviest I have ever been in my life and it scares the hell out of me being this heavy. What it is doing to my heart and organs I dread to think, but the fact I am 36yrs of age and get breathless walking up a flight of stairs terrifies me and I need to get control.
    I have a tough few months ahead but I am up for the challenge. I am fortunate that I am able to stop work. Its a struggle for us financially but the fact that my hubby is so, so supportive is a big plus and I hope I can do him and my family proud.
  6. diane177432
    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
  7. diane177432
    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...Harry and I were checked, Steve chose not to and we went away being told we just had bruising, no major probs...thank god. Just feel really stiff and get the odd pain, so we were quite lucky. Harry is fine, thank god!
    Got home and called the hospital to cancel my appointment, even had the appointment letter in front of me, staring at the date...the receptionist said, "So you want to cancel your appointment in July!!!!" - I couldn;t believe, I had convinced myself it was in June...we did have a good laugh about it on the phone, but boy did I feel stupid...I keep doing that, forgetting things, or getting things wrong...can't believe that we could have avoided the crash, but I guess if it hadn't of happened I would have gone along to the appoinment (an 80 mile round trip) to be told it was next month!
    Steve sorted out the car, so we can still go on holiday...
  8. diane177432
    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 grab a bargain!
    Steve is off today so hopefully after I have sorted a few things out we can go to the garden centre. I have been trying to do Mum's garden and need some bedding plants to spruce it up a bit. She has about a dozen nice pots but nothing to put in them.
    Well, that's it fo rnow. It's 8:15am here and I need to get started...
  9. diane177432
    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 OK and kidney function OK. I feel very rough though but it has been such a mad few weeks with the house move. We are decorating the new house right now so have little time to rest. I feel like I am on the go all the time and just want to sleep. I feel exhausted mentally and physically. Its certainly taking its toll and I still have 2 weeks before I move. What joy!
  10. diane177432
    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 really do think these timings need to be revised - are they that realistic for recovery - I am not sure? Perhaps in patients with just pituitary problems, but not for patients who have Pituitary Cushings - I am sure there must be a big difference in recovery.
    My little boy wanted to go out this morning, my aunt bought him some clothes yesterday and he got all dressed up by himself this morning, made his packed lunch and declared he was going to 'boy's work' - he wanted to be just like his Nan and his Daddy - he was all ready to walk out the front door with his Daddy. It broke my heart when I had to tell him he couldn't and I feel so ill right now that I can't even manage to take him out for a walk. He cried his heart out. Oh, I hate this damn disease sometimes...stops you from doing even the simplest things, great now my back is hurting again. I still haven't been down the Doctors. Right now, I just can't face the walk. I will just wait until my appointment next week, if I feel any worst between now and then, I'll figure something out.
    It's supposed to be a really sunny morning and then we have thundery showers this afternoon and rain at the weekend. Typical!
    I wish this phase of recovery would be over with, if that is what it is - I hope it isn't anything I should worry about. Mum asked me the other day if I still had Cushings - my cheeks were burning bright and she looked so worried - I just couldn't answer her - I just don't know myself, I am so confused.
    7:00pm - Thought I'd post this evening to say after a few hours sleep I am feeling a bit better - still got headaches and a little achy but much better then this morning/afternoon. Mum took Harry out and gave me a well earned break. She's also taken him for a long walk this evening - its a beautiful day here - he'll be very tired when he gets back
  11. diane177432
    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 pituitary appoplexy coming on again and is it affecting my right side, but fortunately it subsided.
    Lately I don't seem to be able to go more than 2 days without having diarrhoea. If it carries on I am going to have to see my GP. My endocrine appointment isn't until 5th December, so I still have another 4 weeks to wait.
    My kidney area always seems to throb like mad when I lay down making it difficult to lay on my sides. I am having to toss and turn during sleep which makes it hard to get a good nights sleep.
    I am just so tired.... :
  12. diane177432
    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 source but now they want to investigate other sources too. I am more scared this time round then I was on the other two run ins with Cushings. This time there is uncertainty in the voices of those that I trust with my health. This time there are more unanswered questions and that worries me. The first time was clear cut - I looked like a typical Cushie and my MRI backed up a macroadenoma - I needed surgery and I needed it quickly...the 1st reccurrance was straightforward, my numbers and physical appearance as well as an MRI showing a regrowth of the residual tumour resulted in an urgent 2nd surgery...it all happened quickly...this time who knows and that's what scares me. Day by day I feel worse and worse and even over the past fortnight I know my health has detioriated and its happening fast. I really hope and pray that this week will answer some questions and things can move forward - a care plan can be put in place and I can have something positive to look forward to. I hate the waiting game...I hate it so much...I need focus...I need to know I WILL get better...I need to know I won't lose my life to this disease - it keeps biting me in the backside and I am just tired - I don;t want to be tired of fighting - its not me - but I am finding it hard this time.
  13. diane177432
    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 much but not having enough hours in the day and I am so worried about the increased weight gain - its doinf me no good and I really need to get some exercise. I say every day I am going to join the gym at work and I still haven;t done it. Mum and I have decided to join Rosemary Conley in a couple of weeks as its a weight in and an exercise class which should hopefully strat things along. If I don;t lose weight then I will start to worry that Cushings is making a comeback...fingers crossed.
    I have an appointment with my endo at the end of September so hopefully will know more then.
  14. diane177432
    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 haven't started taking that yet). The throbbing and burning sensation in my kidney area has not subsided. I mentioned this to my consultant and he said he had never heard a Cushings patient mention this symptom before so was unsure what it was and whether it was related to Cushings. I know from this site that a number of you have mentioned experiencing the same thing so I am certain it is Cushings related and I still believe it is due to adrenal insufficiency. If the hydro doesn;t work he will order an ultrasound of my kidneys.
    I did a 24hr UFC and dropped that off a couple of days ago. We'll see what comes up there. I am just a little impatient at the moment. I have been told I can start growth hormone therapy and am awaiting contact from the Endocrine Nurse...I just want to get started. I really believe this is the missing piece of the puzzle for me and will benefit me a great deal. I am also waiting for a referal to a Counsellor. I know these things take time but its hard as I am not working and twiddling my thumbs watching for the post man. I also have an MRI coming up as I have been getting alot of headaches. My consultant thinks alot of it is related to my depression.
    Finally had an appointment through and start with my new GPs diabetic clinic. It is when I go on holiday though so I have to reschedule. I have to have a diabetic eye test as haven't had one since being diagnosed 4 years ago!!
    I really need to pull my finger out. I have lost all motivation right now. Hubby and I were talking and I have decided to start a certificate in medical secretarial work as I am at home. There are so many jobs at our local hospital but require medical setting experience. I have a strong admin background but think this will benefit me so am enquiring. I am desperate to get back to work but want to start the GH first and get myself a bit fitter so I can last a full day. Its been a struggle just living on one wage, but I think I'll be able to get back to work in February/March time.
  15. diane177432
    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:
    I really hope that further research could be made to find a link as I know a few people here have had pre-eclampsia or had hypertension, toxemia etc through pregnancy and wonder about a possible link between pregnancy and Cushings.
    I still hear Sue's saying 'Baby Steps' and really hope that this is the first of many steps...
    It's a bright and sunny day here in the UK.
  16. diane177432
    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 all angles and know for sure what the pros and cons are.
    We are really settling into our new home and life here and it is so stress free. We have more time on our hands and its quality time. The people here are pretty chilled and relaxed - its all good and being close to the hospital means I can walk there, kills me as it takes me half an hour compared to the 15 minutes it takes hubby to walk to work but hey, at least I'm walking and yes, the exercising is coming along fine too and I am managing to walk, garden and waddle around the house out of tune to exercise videos for at least half an hour a day...haven't lost any weight yet though but can physically feel my muscles toning up so the scales are being cast aside for the time being!!
  17. diane177432
    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 off to work and we didn't say goodbye to eachother. He still hasn't made contact and I am still stewing...AAAAAHHHHHHGGGHHHH!!!
    Harry has an appointment this afternoon with the Plastic Surgeon. His next back operation is coming up. he has 2 more and then that's it. The mole has nearly gone and he has a long horizontal scar across his lower back. They hope to tidy it all up when he has his last operation. He is such a brave little boy.
    Right now I am feeling very useless, very redundant and fed up with life. I feel very fat, ugly and I don't have much love for myself right now. I know these are just feelings I have today and come this evening or tomorrow I will be in better spirits but right now I feel fed up with life.
    I have so much going on in my head right now. Yesterday I thought I would get some plants and do some gardening. Stupidly I lifted some very heavy pots and strained my head, it hurt like hell and I was nearly physically sick, I was hot and perspiring and shaking like a leaf to the point of throwing up. I have really got to learn to stop when my body tells me to instead of pushing the boundaries.
    Oh well, I am off to wallow in my own self-pity....
  18. diane177432
    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 therapy session today and we have come away with an exercise to do this week to get him to use his tongue more when he speaks. Its a story about Tommy the Tongue!!! Very effective and made him giggle. He has a 10 week course with the therapist so I hope it helps as he starts school in September.
  19. diane177432
    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. Tuesday, I was able to walk again as the weather was still OK. However Wednesday to Friday the snow came big time and everything was thrown off. Without any wellies, wasn't sure if I could make it through the snow in flat shoes!! So out came the car...hoping the big thaw will come this week so I can get back to my master plan again.
    We pick up our puppy on the 23rd. We are getting a curly coated retriever from my in-laws who show and breed them. He is a gorgeous little chap. Harry has named him Sam after the characted in 'Lord of the Rings'. He did want to choose between Bilboa and Frodo, but I didn;t fancy shouting that out as a recall !! So, starting the 25th, I will be cycling to work and back so that I can walk him during my lunch hour. Not sure how this is going to work out, but hopefully it will do us both the good.
    Today, as I look out, we still have a snow covered garden. There are lots of birds out thereperched on the many trees surrounding our house. It looks pretty. I'd like to look on the RSPB site for some tips on feeding the birds, but we have 4 cats next door.
    Oh well, off to face a mountain of ironing and a day of spongebob...
  20. diane177432
    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 with Harry and can even manage to try and race him and play football. Even lifting him about isn't putting a strain on my head. We've put back our camping trip a few weeks but I am looking forward to a new adventure.
    I haven't been in the mood for hospital trips and I really need to get my head back into gear. I have cancelled so many important appointments lately, synacthen, neuro, eye test - I just really felt like I needed a rest from it all - I'm sure many of you have been in that place.
    What am I doing in the next couple of weeks. Well I am hoping to see the new Pirates of the Carribean film, just love Johnny Depp as Jack Sparrow and Harry wants to see Garfield 2. Thinking of taking Harry to Thorpe Park in a couple of weeks - he wants to go to Disney World which is way beyond our budget right now so this will be the closest we can get on a much. much smaller scale...lol!
    Yet to hear anything about housing which is frustrating and think we may have to rent privately when our bankruptcy is discharged which is a nightmare as it costs so much and you get so little for your money these days. That's the only stress I have in my life right now and that is good to say.
  21. diane177432
    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 a character on everquest, so Steve's got him hooked...bad news!!
    We have noticed that we have a little blackbird that has nested in our ivy - the babies chirp all day and all night, but it is cute seeing the blackbird collecting moss for its nest.
    I'm not doing much today. Need to do some speech therapy with Harry. We also might make some home made cards today.
    4:40pm - I just have no motivation today - I am feeling incredibly low again, very tearful and not wanting to do much at all. I wish I could kick myself up the bum but I just want to hide away and sleep. I'm just really not having a good time of it. For some reason right now I just feel like I am letting everyone down. Just weighed myself too, thought I'd lost 3lbs but no back up to 18stone 10 lbs again..gggrrrr...oh well, I'll just go and throw myself the biggest pity party until I get over myself...
  22. diane177432
    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 lose but I don;t care - I feel great! I have had so many lovely comments from people and it has boosted my self esteem and confidence, something I have lacked for a very long time.
    And I got a new job....!!!!!!
    Its back at my old firm but its so great to see all my old friends that I haven;t seen for years. I spent years worrying what people thought and thought people would shun me but I was so wrong and I deeply regret all of those lost years, but Cushings brings such solitude and sadness and makes you feel so inferior and worthless. It is so sad, but I am so glad I have been able to rise above it and move forward. I know I have such a long way to go before I am back to what I consider to be 'normal' but I know I am making good steps and as Sue used to say...'baby steps'...each small step brings with it something new and rewarding and I am ready for the pitfalls. Nothing can be worse than what I have been through so it is a challenge to me now.
    I have some testing coming up in April, synacthen and glucogen and I see the oncologist for the first time after the radiotherapy -I am so hoping its all good as I just don't want anything to spoil it right now and I have had too much experience that it does...
    I am also loving our Cush art class. It has helped to boost my confidence by giving me a hobby and something to look forward to - a big thanks goes to Judy and all of the classmates for perservering and making it so special.
    Well that's it for me for now...more later
  23. diane177432
    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 normal health again, would I regain a career I had loved and lost, would I ever be a resemblance of me again.
    I think I have changed, I have grown, I have got older, maybe not as wiser as I had hoped ;-) but I have matured in my outlook on life and how to live my life. I have made many mistakes, some which may end up haunting me and others that I have learnt from and moved on from. I have constantly reflected on what was, what is and what could be...which can be a good and a bad thing. I have faced many of my demons head on and discovered that all those worries and concerns I had were hollow and I feel I have wasted alot of time worrying about things for no reason whatsoever. I went back to a place I had worked a long time ago, faced friends who knew I had been seriously ill and never contacted me. At that point of my life I discovered who were real friends and who were acquaintancies...that was a hard pill to swallow for me. But nonethe less I faced them again and discovered it wasn't so bad. That made me realise that we all have our own lives and sometimes our lives seem so much more bigger and important than others and we can forget that and think to ourselves that no one cares - when in fact they do, but in their own way.
    I went back to a career that I had loved and lost in all this madness. It has been a struggle for me to get there, but I did it and I am at a good place in my career. I still have that ball of ambition in my belly but it has been reined in a bit and only surfaces when I let it. I need stability in my life now and calm...I have gone through too much chaos over the past 7 years and right now this is what is right for me.
    I am living where I want to be. It is a good place. We still need to make it our own...finances still dictate our lives but less so then they did now. It is a better place to be.
    I still have my ups and downs health wise but it is much more controlled than it was. There still isn't a day that I feel well, there is always something but it is liveable...it isn;t crazy anymore and I feel like I can be a wife and a Mother...that makes me happy...that makes me who I am.
    When I said I had come full circle I really mean it. I started out with a good life, good health, a growing family and a good career...I got ill...I lost everything except for me family who supported me all the way...as a family we struggled and fought our way through some tough times...we worked hard...we had goals...I never lost sight of what would be at the end...we're not there yet but we have regained alot of what we lost and more so...as a family it has made us incredibly strong, having lived through what a chronic illness can do to someone...its amazing actually how resilient people can be, how forgiving, how much strength can be drawn from incredible weakness and times of pain.
    I don't know what 2010 will bring...my husband asked me what my New Years Resolutions were and to be honest, I don't know...to live and breathe another year is the most important thing...to be with the ones I love...I look around sometimes and listen to others, watch the news, read the papers, check out facebook...so much is going on, not all of it is good. I sometimes thinks some of these people need to face some bad times to make them assess their lives and appreciate all they have. We live in a very materialistic World rightn now and the appreciation for some things has been lost. I find that sad. I 'm not going to stand on some moral soap box right now and I am not saying I wish bad things on other people. I just wish that some of us can take time out and step back from ourselves and our lives and look at the bigger picture. Sometimes I think being ill helped me to do that and there are moments when my life isn;t chaos and work and looking after the family, the housework, school projects, gardening when I just smile and think, it's going to be OK....
  24. diane177432
    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.
    My stomache still resembles a large beach ball - it is such an odd shape and look. My cheeks are bright red and my face is still very round...has Cushings gone...I am really having my doubts lately. I sometimes wonder if they do choose the right route here in keeping the pit gland intact. Would I have a better chance if they had removed the left side as they said they would. Would this prevent further re-growth. I believe so...well roll on the 18th May and I'll know for sure. The only thing I hate is that my endo said my initial blood tests post-op looked good, this is what happened last time round and I still feel like crap this time round.
  25. diane177432
    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 my spirits.
    I have had one re-occurring problem and that is this damn kidney ache. Its been going on for nearly 2 years now and is driving me mad, to the point where I have trouble sleeping now because it hurts to lay on either side. Its not in the adrenal area although I wondered if it could be cortisol related. It seemed to subside when I went to Scotland at Christmas, I was relaxed and resting. Now I am back home and back to my normal busy routine, its resurfaced...very odd.
    I am enrolling on a medical secretarial course soon and have started to apply for jobs. It is a happy medium between my experience as an administrator and my nursing ambitions that I know will never come to fruition now. Fingers crossed I get some interviews.
    I have an appointment with my GP on Tuesday to talk about a referal to see a counsellor. Although I am emotionally better of late, I still think I have a lot of unresolved issues that I would benefit from talking to someone about that is not a family or friend. We'll see. On Wednesday I get my GH and I am so excited! I truly believe this will answer alot of questions for me. For over 2 years I have been trying to get it and its finally happening. I also have a day curve on that day too. Hopefully everything is going OK. I don't see my Doctor now for 4 months. By that time I hope to have lost a lot more weight and notice some improvements ont he GH too.
    Well that's all the news I have for now. I am busy trying to create a veggie plot in my garden and have been busy clearing space. Knackering me out but I am just happy I have some energy to be able to do it. It wipes me out for the rest of the day but hey ho...
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