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diane177432

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Blog Entries posted by diane177432

  1. 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!
  2. diane177432
    I had a telephone discussion with the course leader today and she advised me to withdraw from my nursing course and reapply to the other University once I have my test results through and all is OK. I personally think this is the most sensible course of action although I would have liked a simple transfer, it would be easier this way. I feel very sad about not being able to work with my new friends but I guess life has a different deck of cards for me.
     
    My cheeks are still burning red, I look very cushingoid today. I feel so tired and a little low. I thought I'd jump on the scales and see what I weigh - I know I should wait a wwk so sill to do so but I was shocked to see I had gained 3 LBS in 1 day. It's probably water retention but I do feel so crappy right now.
     
    I tired to be proactive yesterday and started doing some research on GP surgeries and Endocrine Clinics around the country. I've managed to list some Endocrine Clinics - Doctors surgeries are going to take some time as there are so many. This is going to be a mammoth task, but it is very exciting. I think I need something like this right now.
     
    I have tons of housework to catch up on and a pile of ironing to tackle, but no energy whatsoever. Just finished doing some work for Steve, writing up some stuff for him. My brain aches...
     
    I'm trying to buy some bikes from ebay right now in a bid to exercise more. Just lost a bid...onward with the search.
  3. 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.
  4. 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.
  5. diane177432
    Its 7:30am right now and the house is so silent. Mum's doing overtime and was off to work at 6am and Steve and Harry are curled up in bed and it is so quiet, it is blissful.
     
    As I said in yesterday's blog, come the evening and all was well again. Steve and I sorted out our differences and it turned out to be a lovely evening. The boys had dinner in the garden as it was a gorgeously warm evening and Mum and I shared a few laughs in the house.
     
    Harry's appointment went OK, if a little rushed. He will only have 1 more surgery which is great. The plastic surgeon said that there is a samll chance he that the mole might resurface. Also some of the stitches may come to the surface. He showed me 2 which I hadn't even noticed. I guess as Harry hasn't complained about them. So, this should happen in 2-3 months. I'd like it to get sorted before he starts school.
     
    Well, I better start getting ready as Mum wants me to pay some bill sin town...I had Saturday shopping...so am starting out as early as possible to avoid the rush!!
  6. diane177432
    Well, I went in for the blood draw on Tuesday and it took 5 attempts to find a vein that would co-operate - came away with all my arm swollen and bruised. It's very sore. yesterday, I was feeling so rough. I think its a combination of starting back on the hydrocortisone and changing insulin. Actrapid ceased production at the end of December and I had enough to see me through to now. I have been switched to Novotrapid which is a shorter acting insulin. I feel very rough. I was incredibly emotional yesterday evening. I just wanted to sit down and cry and just get it all out of my system - sometimes the best way, I suppose. A bit of a rollercoaster. Emailed the resolution to my endo as I thought it would be good to share the news over here of all your fantastic efforts and he emailed back a very supportive message. I really want to start doing more over here. Just a little to start off with until I know I am much better but I feel stronger day by day, just tired and the usual joint and muscle problems - a good sign, perhaps.
     
    I guess I am hitting the emotional rollercoaster wall right now, I just want to cry all of the time, I feel very all over the place right now. I ffel so emotional inside and have all this emotion welling p yet my head doesn't seem to want to co-operate and is not letting me get the wmotion out. Usually when I feel like this I can have a good cry and get it out of my system, but I can't even manage that and I have all this emotion and frustration building up inside. I am getting incredibly over sensitive right now as well, I just feel so tired. Maybe I should stay off the boards for a few days. Probably won't be able to offer much helpful advice to anyone right now. God, I hate feeling like this. I have to finish off the stack of housing applications. They all want extra information that I will have to scan and print, I just have no energy. I have been trying to get Steve to take Harry to his Mum's for Easter so I can have some time to myself but he doesn't want to. I think I could just do with some 'me' time right now. Mum has been talking about having a massive spring clean this weekend and Steve wants me to work on some paperwork with him. I just want a break from everyone.
     
    I thought I would borrow some books from the library to try and get me out of this mood and so got out a 'Colour Me Confident' book from the 'Colour me Beautiful' team - it gives some quite useful tips on what clothes and colours suit as well as make up and accessories. To be honest I have lost all sense of style (not that I had much anyway) or any perception of what looks good or not since my whole body shape changed and I coloured my hair darker. My complexion is more ruddy as well - I used to be just pastey!! So I might go through my wardrobe today and have a good old clearout. Not much fits me these days anyway and I find myself living in the same old clothes day in day out - can't be bothered to make an effort on anything else. Perhaps that is what I need to get myself out of this. Yes, I know it is probably all hormonal right now but I need some sort of boost. I ahte getting tearful at the drop of a hat. As I keep saying, I think I just keep forgetting what it's like post-op.
  7. diane177432

    Testing time

    By diane177432,

    Currently doing a 4-day Dex test. Started on Friday and will have a blood draw tomorrow (Tuesday) at 9am. Also doing 2 days of 24hr UFC collections. Felt really awful on the 1st day - awoke during the night shaking, couldn't regulate my body temperature, hot and cold extremes, sharp pains in a centralised area of the back of my head, feeling nauseous. Today I am feeling quite energised. I never know how to look at it, is this good, or is this a bad sign. Cushings can be so confusing whether you are pre or post-op.
     
    I am going to the hospital with Mum today. She is having an ultrasound as she found a lump near her ribs some time ago. The Consultant thinks it might just be a fatty lump but wants to confirm with the scan. She has also found two lumps on her head which they are going to have a look at. Mum is tired an awful lot - she works very hard in a factory but she sleeps all the time and I don't think that is right. She is always complaining about aches and pains and illnesses of some sort yet she never gets herself checked out. I have been suspecting my Mum suffers from some sort of hormonal imbalance for some time. She has Diabetes (Type II - diet only), but doesn't follow a diabetic diet then again I don't follow one strictly.
     
    I have made a decision to defer my nursing course to Spetember to give myself time to mend and adjust to any weaning. I want to be nearly 100% OK before I let myself loose on the wards. The Doctors said I should be OK to go on placement this month but I know what its like in recovery and I want to be confident that I won't suffer from over tiredness and I think I will find it hard to do 7 hour days right now. I am also going to try and change Universities as Steve and I are now applying for housing and we would like to live closer to Steves work. There is a University there and it was one I had considered originally but just wasn;t practical at the time. I am hoping the University will be understanding and allow me this opportunity - there is so much red tape you have to go through though. Makes me laugh as there is such a demand for nurses but they make things so difficult for you.
     
    Well, its a chilly but very sunny day here today. I better get on and get ready as Mum will be back soon and I need to get Harry ready too.
  8. diane177432
    I am feeling good...actually went out on my bike yesterday and Steve and I have promised to try and go out each evening. I can tell you, I hurt...soooooo much....my legs were burning and so was my chest and I ache today but boy was it worth it - I felt so good !! I would never have thought I could have ridden a bike a year and a half ago.
     
    Steve and I are also planning a camping trip - never been camping in my life! but we have gone and got us a tent and are heading for the Norfolk coast for my birthday - I am so excited - I love the outdoors and haven't had a holiday with Steve and Harry in years so am really looking forward to the break. Got a feeling this will be good for us a s a family as it will get us out in that fresh air and meeting people - just exactly what we need.
     
    On the health front, I am weaned to 25mg from 30mg of hydrocortisone and am doing fine. I will give it another couple of weeks and see how I do on 20mg. Doc wants me to be weaned to 20mg by August, so I will see how it pans out. I still get exhausted some days and have taken to having an afternoon sleep on Sundays but all in all not feeling too bad right now.
  9. diane177432

    Ugghh....

    By diane177432,

    I've woken up with such a bad headache, I feel so rough. It hurts across my forehead and behind my eyes. I'm trying to reduce my hydro by 5mg today as I was on 25mg around this time last time I was in recovery and personally I just feel I am on too much being on 30mg. My endo appointment was supposed to be at 6wks post-op but I am seeing my endo at 9-10weeks post-op. I can't wait that long....
     
    Feeling very disheartened right now and need some serious cheering up. An old friend is visiting this afternoon so hopefully that should do the trick. Taken some lovely photos of Harry with my new camera. I am snap happy right now!! Much to the annoyance of my models!!
     
    Just feeling so low again today, tearful, I feel sick, very nauseous and just downright in the dumps. I can usually pull myself out of the duldrums, but I can't today. I really hate this rollercoaster bit in recovery, up and down, up and down, drives me nuts. I feel so rough that I have cancelled seeing my friend today. I just don't feel up to seeing anyone right now.
  10. diane177432
    Came away feeling deflated. Numbers are looking OK. Thyroid is now borderline within range. Oestrogeon is still on the low side. The plan is for me to reduce my hydro to 25mg and if I am OK try to get down to 20mg. I am increasing my thyroxine to 125mcg - see if that helps with weight loss. Need to combat one thing at a time in order to eliminate what is happening, so will have to continue to be patient. If a reccurance occurs then radiotherapy is looking likely. Need to also get used to Novotrapid. Try to get my sugars under control to a good level.
     
    Gave blood and urine sample today - am scheduled for a synacthen test in 3wks. Will see endo again in August. In the meantime have eye app. on June 5th, MRI on June 9th and see neuro on July 10th.
     
    Just feel deflated, just want this to end sooner then later, just feel like I am getting nowhere.
  11. 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.
  12. 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...
  13. diane177432

    Ups and downs

    By 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.
  14. 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.
  15. diane177432

    Zoo and MRI

    By 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!!!

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