Jump to content
Strawberry Orange Banana Lime Leaf Slate Sky Blueberry Grape Watermelon Chocolate Marble
Strawberry Orange Banana Lime Leaf Slate Sky Blueberry Grape Watermelon Chocolate Marble

diane177432

Over 2000 Posts
  • Content Count

    2,664
  • Joined

  • Last visited

Community Reputation

2 Neutral

About diane177432

  • Rank
    Over 2000 Posts

Contact Methods

  • AIM
    diane177432
  • Website URL
    http://
  • ICQ
    0

Profile Information

  • Interests
    Learning to regain all of the fun and adventure in life that I once had. It's been a struggle but I am achieving things every day. <br /><br />I have many loves, my family is my life, I love books and art, the countryside and walks, nature, stormy days and sunsets, full moons and sunny days. I like listening to the waves on the beach and watching the waves crash against the shoreline. I love the rolling hills of the Essex countryside, spotting deer in the forests and listening to the sounds of the birds chirping when its first light. Fighting this disease has made me appreciate the subtle things in life and try my best to live for today. Its hard, but with each day comes new beginnings.

Recent Profile Visitors

2,688 profile views
  1. I had stereotactic radiotherapy treatment and fortunately the hospital staff were extremely competent and I would not be where I am today healthwise had it not been for this treatment. I tumour has shrunk and continues to... This is obviously a sad and unfortunate story but we shouldn't tar everyone with the same brush.
  2. 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. 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...
  4. Thanks for your reply. I have now been in recovery for 3 years. I had pituitary surgery in 2004 and 2006 and radiotherapy at the end of 2006. I am sorry to hear that you have been unwell too. My blog wasn't so much as being hard on myself, I didn't intend it to come across that way - it was more about what a journey the past year has been for me personally. My life really has come full circle. All that I have lost has been regained except for full health of course. I am nearly back to my old self and when I say there isn;t a day that goes by that I am well, I mean the small things like an imbalance of my medication, feeling a little tired, having a headache. The only probem is I think when you live with a chronic illness you get so used to accepting all that goes with it that in the end it becomes hard to distinguish between what is normal and what isn't. For example if I didn;t have Cushings and I had a headache, I would think, oh well I have a headache, I'll take some parecetamol. But with Cushings and my experiences, I think, are any of my meds out of balance, check my blood sugars, am I on the right dose of insulin, I hope the tumout isn;t playing up again...that's what I mean about not a day goes by that I don't feel well. I hope I will come to a point when I can just live my life without these concerns. I reached out to this site a long time ago, back in 2004 I joined and met the most wonderful compassionate people, some of whom are still posting. If you haven;t psoted yet, I would urge you to do so. You will meet like minded people who have been through some incredible journies and your experiences could help them through. Thanks again for reading my blog. I really appreciate your reply. Diane x
  5. 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....
  6. Hi Judy, The people I am seeing today are in the Genetics Endocrine Unit at Addenbrookes Hospital in Cambridge, UK. Their names are Dr Soo-Mi Park and Dr Helen Simpson. As I recently found out my step-brother was rushed to hospital with a tumour and has been diagnosed with cancer and also my Grandad adn Uncle on my Dad's side had brain tumours as well as my Nan on my side, we need to find out whether this will effect our son as well as my step-siblings off spring (half brother and sister on my fathers side). I cintacted my endocrine consultant Dr Mark Gurnell and he got me to contact my neurosurgeon Professor John Pickard and I git the referal. Fingers crossed, we all get some answers and can beat this. Best wishes, Diane xx
  7. Who is the endo Judy? I am seeing a genetics endo team on Monday to discuss hereditiary brain tumours. Best of luck, Diane xx
  8. 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...
  9. 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.
  10. Thanks Robin. Sorry I missed your post to my blog. That's very kind of you. Needing a lot of virtual hugs right now - life is getting me down alot of late... Much love Diane xx
  11. 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. 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 woman...LOL!! Oh, joy! Need it like a hole in the head. The drawbacks are that I have had a very hormonally challenged 2 weeks getting quite emotional all the time and having fits of tears and sadness. Could also be that I am missing work so much and am feeling rather isolated and lonely again. I am finding it hard to make friends here. Always concious of having Cushings and physically looking obese and round, red faced. I cannot just go up and introduce myself to people even though I am a bubbly and chatty person when I get started. I took my son to a party yesterday and the Mum commented on how red my face looked. She asked why? She thought I was blushing badly!! I didn't know her from Adam and I felt it quite personal and intrusive that she asked. I initially said I feel hot and then I said I was diabetic...no mention of Cushings...I don;t like to say I have a disease for fear I get that look as though they might catch something. The loneliness I feel right now is so overwhelming and I do hate feeling sad like this. I am usually quite positive externally and try my best not to project my inner feelings on others but of late its getting hard. I have a day curve on Tuesday but don't see my endo until December. I am just losing faith in everything. Time for a re-evauation I think. I need to shake this off and focus. I even applied for a fantastic job at a local Publishers. Fit me to a tee. They invited me to interview and sent me the full job spec. When I received it I discovered I would have to manage people...I froze...in a World without Cushings, I would have jumped at the opportunity and gone to the interview with gusto...however I emailed personnel and made up an excuse that I couldn't attend the interview...the person I once was has gone and that made me incredibly sad.
  13. 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!!
  14. 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.
  15. 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!
×
×
  • Create New...