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diane177432

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Blog Entries posted by diane177432

  1. 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....
  2. diane177432
    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.
  3. 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
  4. 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.
  5. 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...
  6. 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.
  7. diane177432
    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 playground. The kids are back at school so he had alot of things to himself. Although he did make friends with 2 little boys.
     
    In the afternoon, I had my MRI scan, with and without contrast. I could have just fallen asleep on the MRI bed as I was so tired - shame about that continuous knocking sound that kept me awake...LOL!
     
    Came home, and was ready for bed but had to catch one of the World Cup opening games. I'm not a big fan of football but World Cup fever has hit the UK. Harry already has his inflatable armchair with drink holder!!
     
    We're off to the forest again this weekend for a throw around of the frisbee and a game of footie.
     
    Mum and I are joining a diet and exercise class next week. Wish me luck! I have 6 stone to lose. Only a small amount!!!
  8. 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.
  9. 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...
  10. 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.
  11. diane177432
    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 some new friends. It is the first time in years that I have felt ready to work and not scared or have anxiety attacks.
     
    I got accepted into University to restart my nursing training and start in March 2007, full-time. I am so excited that finally I get to follow my dream.
     
    My radiotherapy starts on Tuesday 14th November. I have my simulation tomorrow...fingers crossed.
     
    I have now lost 22 pounds in weight and am on my way...nearly 10% of my starting weight. I am thrilled with how I feel and my health in general and hope that the readiotherapy is the last stage in heading for that elusive cure.
     
    I want to give others hope that ther is another side to this terrible disease - it sometimes takes a long time to get there, but please never give up hope.
  12. diane177432
    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 that hopefully won't involve hospital visits and testing but doing normal things, like finding a job, holidaying with my family and experiencing new things, doing things I love and rekindling my enthusiasm for life now I have more energy.
     
    I hope 2007 brings good things for you all and a Happy New Year!
  13. 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
  14. 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...
  15. diane177432
    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 cortisol was 600 plus after the news that I was heading for a cure back in May and all seemed to be looking good. My menstrual cycle even started up for a month after years of nothing happening...but that was short-lived and everything went pear shaped...not sure why...I had a few stress outbursts and felt like I had an episode of the pituitary appoplexy again but after getting in touch with my Endo, he sent me for an emergency MRI which showed no change...so odd...I then did a 3-day Dex test and 2 x 24hr UFC's and am now waiting for the results. Its baffling them and for me that is unsettling as I just want to know what is happening. For several years I have gone through this, "Well it could be this, it could be that" routine without any real certainty and I am just tired of it all now. I have remained so positive for so long but it is now wearing me down. For a short while I had a brief taste of some sort of normality. Now my weight has pushed its way up again - I had lost 26lbs but have now put all but 5 lbs back on, I am breathless, I am 35 and feel so much older and I am representing so many familiar symptoms. My diabetes is still under control which adds to the confusion of it all.
     
    Emotionally, I seem to be stronger though - less tears this time, just a feeling of frustration and of been there, done it - just want to get on with my life but having to come to grips with the testing and waiting game again is annoying. In the meantime, my family is in limbo with me and you can go through so much and then the strain starts showing and that's something else we need to deal with on top of everything plus worrying that work may lose their patience, although they have been fab so far, you can only have so much time off and I have only been there 7 months. I used to work there years ago and they are a stable company with good benefits and felxibility - not something I want to lose as its stability that gives some balance to my life right now - and most of all is helping to pay the bills. It also gives me a sense of self-worth and for a long time when I was ill I lost that and felt I was just good enough for shelf stacking and not much else despite the great career I had prior to Cushings. My self-esteem plummetted and my pride was all but shot. I lost everything and felt like I was nothing. To be back in a position that gives me the autonomy to be myself again has ben a blessing and a fresh start - If Cushings enters my life again I don;t know what I will do...
  16. 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.
  17. diane177432
    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 felt wonderful. I can't complain because at least I am up doing things, still active, working and able to move around - it is nowhere near how bad I was so I know if it is back it is mild but I worry about what my options will be as there is no sign of tumour regrowth and that scares me if they turn around and are so flummaxed that they just don;t know what to do with me - but test, test, test and then prolong there diagnosis and or way forward - I am just so tired and just so desperately just want to get on and live my life.
  18. 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.
  19. 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...
  20. diane177432
    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:
     
    1) To take control of my Cushings by getting off the dexamethasone completely. If this is not a viable option then to increase my ketaconozole and take a small amount of dex but closely monitor my liver function.
     
    2) To start a course of oestrogeon/HRT
     
    3) To start Growth Hormone therapy - they need to do this though the PCT and so it depends on them as it comes from their budget by my consultant feels I am low in GH and need this.
     
    I asked about fertility v adoption and he feels it would not be in my best interests or that of the baby to try and get pregnant in my present condition. It would be unsafe and ultimately could cause my tumour to regrow. Therefore we are now looking into adoption.
     
    The past few months since being diagnosed with the reccurrance have been up and down. I want to make th emost of this year so have tried to work through it and stay focused. It has been difficult and challenging but I am getting there. Some days are more difficult than others.
  21. diane177432
    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 worry was that I had difficulty walking and it took me back to when I had aggressive Cushings and my mobility was affected.
     
    Today I feel a bit better. Not great but good enough to go back to work and get through the day. That's what it is like for me now - I get through the day...
     
    We will be moving to a house soon which will be so great. I cannot wait to have that extra space and finally a garden again that I can sit out in and relax. I feel very penned up in the flat and it is getting very stressful. The communal areas are getting destroyed and damaged and not a night goes by without some arguing outside or the police turning up at a neighbours house - its just awful. The building is just 2 years old and would be a lovely place to live if it weren't for the few that spoil it. Its very sad. Still, not long. The house is just a walk away from my hospital which will be great and also walking distance to hubbys work. I am concerned about my commute to work, will I feel exhausted? But its a chance I have to take. I really like working for my company. The people are lovely and its suits me. Its a fairly relaxed environment.
     
    I don't know what will happen to me this year. I look very Cushingoid but right now as I keep going hypoadrenal taking the low dose of ketaconozole, I am having to add a small dose of dexamethasone to bring my levels back up. Only problem is they want me to get between 250-300 amd I am going slightly over that. The Cushings needs to get under control but I don;t know how to get there. I feel I am all over the place sometimes, and having to work, take care of a home and family too - it all becomes very tiring and I am finding now I am having to sleep during the day at the weekends for 2-3 hours. Fortunately hubby is so helpful and lets me go off for a nap, looking after our son.
     
    I just want things to improve healthwise as everything else seems to be falling into place for our family. This would be the icing on the cake but I am not that optimistic it will happen anytime soon right now.
  22. 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!
  23. 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.
  24. 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!!
  25. 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.... :
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