Jump to content

diane177432

Over 2000 Posts
  • Content Count

    2,664
  • Joined

  • Last visited

Everything posted by diane177432

  1. 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.
  2. 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...
  3. Thanks Mary - I sure hope some new avenues are sought soon - it would be nice to have a vision of a Cushings free future! Diane x
  4. 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
  5. Couldn't agree more Jo! Liz has been a fantastic and supportive friend to me too in the last 2 years - one of the reasons why I am glad I found this site.

    Love - Diane xx

  6. 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!
  7. 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.
  8. 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.
  9. 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.
  10. 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!!!
  11. 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.
  12. 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...
  13. Thanks Jackie - you'll have to give me some tips!!! Steve and I are going to test run the tent today to see if we can put it up!!! The instructions could be in Japanese for all I understand them but Steve has camped before so I am relying on his knowledge!! I have a 6 berth tent...and that's just for me...LOL! Out on the bike again this weekend. I got a bargain from e-bay as I thought I better get a cheap one just in case I don't get on with cycling - but it has been liberating - I can't cycle huge distances as my legs burn so much but I am weaning right now so that doesn't help - but I must say, it is fun! Love Diane xx
  14. 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
  15. 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.
  16. 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.
  17. Woke up with no energy, muscles are just aching so much. My lips feel numb. I head feels heavy. Had continuous headaches last night. I just feel like I need to lie down and sleep today, I just feel drained. My cheeks are burning too. I just don't feel right at all. Is this me getting better....?? I am glad now that I decided to defer my studies. I really don't know how I would have been able to manage them right now. To think that my Doctors recommended I would be fine after 8 weeks. i really do think these timings need to be revised - are they that realistic for recovery - I am not sure? Perhaps in patients with just pituitary problems, but not for patients who have Pituitary Cushings - I am sure there must be a big difference in recovery. My little boy wanted to go out this morning, my aunt bought him some clothes yesterday and he got all dressed up by himself this morning, made his packed lunch and declared he was going to 'boy's work' - he wanted to be just like his Nan and his Daddy - he was all ready to walk out the front door with his Daddy. It broke my heart when I had to tell him he couldn't and I feel so ill right now that I can't even manage to take him out for a walk. He cried his heart out. Oh, I hate this damn disease sometimes...stops you from doing even the simplest things, great now my back is hurting again. I still haven't been down the Doctors. Right now, I just can't face the walk. I will just wait until my appointment next week, if I feel any worst between now and then, I'll figure something out. It's supposed to be a really sunny morning and then we have thundery showers this afternoon and rain at the weekend. Typical! I wish this phase of recovery would be over with, if that is what it is - I hope it isn't anything I should worry about. Mum asked me the other day if I still had Cushings - my cheeks were burning bright and she looked so worried - I just couldn't answer her - I just don't know myself, I am so confused. 7:00pm - Thought I'd post this evening to say after a few hours sleep I am feeling a bit better - still got headaches and a little achy but much better then this morning/afternoon. Mum took Harry out and gave me a well earned break. She's also taken him for a long walk this evening - its a beautiful day here - he'll be very tired when he gets back
  18. I received a very welcoming email this morning in response to an email I sent in April concerning a study I took part in back in 2001 when my son was born. It was looking into the genetics of Pre-eclampsia. Since being diagnosed with Cushings, I have always wondered about the link with Cushings and emailed a Doctor on the study to ask if any links had been found. Here is my post: http://cushings.invisionzone.com/index.php?showtopic=16016 I really hope that further research could be made to find a link as I know a few people here have had pre-eclampsia or had hypertension, toxemia etc through pregnancy and wonder about a possible link between pregnancy and Cushings. I still hear Sue's saying 'Baby Steps' and really hope that this is the first of many steps... It's a bright and sunny day here in the UK.
  19. Feeling a bit better today emotionally - my spirits are more up on yesterday. Tackling my ever growing ironing pile but having plenty of breaks in between as I feel so tired still. Its taking me ages but my arms and legs just ache. Harry and I were mucking around with that Monkey email that Robin posted some time ago - Harry was in a fit of giggles and I can't get him off of it - Thanks Robin!!! I've decided to wait to see my endo next Thursday. I know I am probably silly but I just have no energy right now and am forcing myself to do simple house chores. To get Harry ready and walk up to the Doctors just seems a mammoth task right now. Right now I do feel like the days are going by so quickly and I am not achieving much. Oh no, I better stop thinking or I'll get myself back in the doldrums again....
  20. diane177432

    Monday...

    I'm feeling Ok today apart from this continuous thirst I keep having. I am drinking so much and my mouth is always dry??? I received Sherry's beautiful bracelets through the post today which was a nice surprise. I bought one for Mum too which I am sure she will love. The weekend was a quite one. I spent yesterday immersed in a James Patterson Book '4th of July' which has been one of those can't put it down books. Nearly finished it. Steve cooked a gorgeous dinner yesterday. Harry now has a character on everquest, so Steve's got him hooked...bad news!! We have noticed that we have a little blackbird that has nested in our ivy - the babies chirp all day and all night, but it is cute seeing the blackbird collecting moss for its nest. I'm not doing much today. Need to do some speech therapy with Harry. We also might make some home made cards today. 4:40pm - I just have no motivation today - I am feeling incredibly low again, very tearful and not wanting to do much at all. I wish I could kick myself up the bum but I just want to hide away and sleep. I'm just really not having a good time of it. For some reason right now I just feel like I am letting everyone down. Just weighed myself too, thought I'd lost 3lbs but no back up to 18stone 10 lbs again..gggrrrr...oh well, I'll just go and throw myself the biggest pity party until I get over myself...
  21. diane177432

    Ugghh....

    I've woken up with such a bad headache, I feel so rough. It hurts across my forehead and behind my eyes. I'm trying to reduce my hydro by 5mg today as I was on 25mg around this time last time I was in recovery and personally I just feel I am on too much being on 30mg. My endo appointment was supposed to be at 6wks post-op but I am seeing my endo at 9-10weeks post-op. I can't wait that long.... Feeling very disheartened right now and need some serious cheering up. An old friend is visiting 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.
  22. Its 2:45am and I have been up since 1:15 with a bad tummy. I feel so rough and my head is banging. Just trying to rehydrate myself and I am so tired, I just want to sleep, but the pains are so bad. Took loads of photos on my new camera yesterday. Its my 1st digitial camera and I must admit when you see photos of yourself it gives a different perspective. I was saddened to see what I look like. I don't like how I look at all. I just want to be off of these steroids and free of this disease. My stomache still resembles a large beach ball - it is such an odd shape and look. My cheeks are bright red and my face is still very round...has Cushings gone...I am really having my doubts lately. I sometimes wonder if they do choose the right route here in keeping the pit gland intact. Would I have a better chance if they had removed the left side as they said they would. Would this prevent further re-growth. I believe so...well roll on the 18th May and I'll know for sure. The only thing I hate is that my endo said my initial blood tests post-op looked good, this is what happened last time round and I still feel like crap this time round.
  23. 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!!
  24. It started out a fairly good morning, then Steve got a mood on and made a comment and there we are having a row in the car with Harry telling us to be quiet....not good....I felt so stressed, my head was pounding, I felt dizzy, I felt sick - I am not handling stress that well right now - reacting to situations. I hate it! I don't like arguing in front of Harry but both Steve and I got bees in our bonnets this morning and both went for the jugular. Was left with me not talking to him, dropped him off to work and we didn't say goodbye to eachother. He still hasn't made contact and I am still stewing...AAAAAHHHHHHGGGHHHH!!! Harry has an appointment this afternoon with the Plastic Surgeon. His next back operation is coming up. he has 2 more and then that's it. The mole has nearly gone and he has a long horizontal scar across his lower back. They hope to tidy it all up when he has his last operation. He is such a brave little boy. Right now I am feeling very useless, very redundant and fed up with life. I feel very fat, ugly and I don't have much love for myself right now. I know these are just feelings I have today and come this evening or tomorrow I will be in better spirits but right now I feel fed up with life. I have so much going on in my head right now. Yesterday I thought I would get some plants and do some gardening. Stupidly I lifted some very heavy pots and strained my head, it hurt like hell and I was nearly physically sick, I was hot and perspiring and shaking like a leaf to the point of throwing up. I have really got to learn to stop when my body tells me to instead of pushing the boundaries. Oh well, I am off to wallow in my own self-pity....
  25. Finally got Steve's blasted paypal account to work and have ordered a copy today...can't wait to see it Cheryl!!! Much love Diane xx
×
×
  • Create New...