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Blog Entries posted by diane177432

  1. diane177432
    I'm feeling Ok today apart from this continuous thirst I keep having. I am drinking so much and my mouth is always dry???
    I received Sherry's beautiful bracelets through the post today which was a nice surprise. I bought one for Mum too which I am sure she will love.
    The weekend was a quite one. I spent yesterday immersed in a James Patterson Book '4th of July' which has been one of those can't put it down books. Nearly finished it. Steve cooked a gorgeous dinner yesterday. Harry now has a character on everquest, so Steve's got him hooked...bad news!!
    We have noticed that we have a little blackbird that has nested in our ivy - the babies chirp all day and all night, but it is cute seeing the blackbird collecting moss for its nest.
    I'm not doing much today. Need to do some speech therapy with Harry. We also might make some home made cards today.
    4:40pm - I just have no motivation today - I am feeling incredibly low again, very tearful and not wanting to do much at all. I wish I could kick myself up the bum but I just want to hide away and sleep. I'm just really not having a good time of it. For some reason right now I just feel like I am letting everyone down. Just weighed myself too, thought I'd lost 3lbs but no back up to 18stone 10 lbs again..gggrrrr...oh well, I'll just go and throw myself the biggest pity party until I get over myself...
  2. diane177432
    Feeling a bit better today emotionally - my spirits are more up on yesterday. Tackling my ever growing ironing pile but having plenty of breaks in between as I feel so tired still. Its taking me ages but my arms and legs just ache.
    Harry and I were mucking around with that Monkey email that Robin posted some time ago - Harry was in a fit of giggles and I can't get him off of it - Thanks Robin!!!
    I've decided to wait to see my endo next Thursday. I know I am probably silly but I just have no energy right now and am forcing myself to do simple house chores. To get Harry ready and walk up to the Doctors just seems a mammoth task right now.
    Right now I do feel like the days are going by so quickly and I am not achieving much. Oh no, I better stop thinking or I'll get myself back in the doldrums again....
  3. diane177432
    I received a very welcoming email this morning in response to an email I sent in April concerning a study I took part in back in 2001 when my son was born. It was looking into the genetics of Pre-eclampsia. Since being diagnosed with Cushings, I have always wondered about the link with Cushings and emailed a Doctor on the study to ask if any links had been found. Here is my post:
    I really hope that further research could be made to find a link as I know a few people here have had pre-eclampsia or had hypertension, toxemia etc through pregnancy and wonder about a possible link between pregnancy and Cushings.
    I still hear Sue's saying 'Baby Steps' and really hope that this is the first of many steps...
    It's a bright and sunny day here in the UK.
  4. diane177432
    Woke up with no energy, muscles are just aching so much. My lips feel numb. I head feels heavy. Had continuous headaches last night. I just feel like I need to lie down and sleep today, I just feel drained. My cheeks are burning too. I just don't feel right at all. Is this me getting better....??
    I am glad now that I decided to defer my studies. I really don't know how I would have been able to manage them right now. To think that my Doctors recommended I would be fine after 8 weeks. i really do think these timings need to be revised - are they that realistic for recovery - I am not sure? Perhaps in patients with just pituitary problems, but not for patients who have Pituitary Cushings - I am sure there must be a big difference in recovery.
    My little boy wanted to go out this morning, my aunt bought him some clothes yesterday and he got all dressed up by himself this morning, made his packed lunch and declared he was going to 'boy's work' - he wanted to be just like his Nan and his Daddy - he was all ready to walk out the front door with his Daddy. It broke my heart when I had to tell him he couldn't and I feel so ill right now that I can't even manage to take him out for a walk. He cried his heart out. Oh, I hate this damn disease sometimes...stops you from doing even the simplest things, great now my back is hurting again. I still haven't been down the Doctors. Right now, I just can't face the walk. I will just wait until my appointment next week, if I feel any worst between now and then, I'll figure something out.
    It's supposed to be a really sunny morning and then we have thundery showers this afternoon and rain at the weekend. Typical!
    I wish this phase of recovery would be over with, if that is what it is - I hope it isn't anything I should worry about. Mum asked me the other day if I still had Cushings - my cheeks were burning bright and she looked so worried - I just couldn't answer her - I just don't know myself, I am so confused.
    7:00pm - Thought I'd post this evening to say after a few hours sleep I am feeling a bit better - still got headaches and a little achy but much better then this morning/afternoon. Mum took Harry out and gave me a well earned break. She's also taken him for a long walk this evening - its a beautiful day here - he'll be very tired when he gets back
  5. 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.
  6. 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.
  7. 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
    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.
  9. diane177432
    Well, its been a proactive day in terms of my health and fitness. I started my new healthy eating regime today and did 20 minutes on the strider. It really tired me out. I am 8 weeks post-op tomorrow and I told myself that once my 8 weeks recovery is up, I will attempt to see if I can lose some weight. I am not that optimistic being on 30mg of hydro as it is bound to prevent weight loss, but even if a few pounds come off and I hit a plateau I will be happy. I don't like being this big and the last time I was this big was just before my 1st op and I had full-blown cushings then.
    I am getting anxious about whether I am in remission or not. I hope I am. My cheeks constantly burn and any cushingoid sign gives me cause to worry. I am usually perceptive about these things, much to my own annoyance!!
    I finally started doing some reseach on UK Endocrine clinics today. It will take some time to make a listing of GP surgeries as there are so many practices. I guess if I can tackle it one county at a time. The cost of a stamp isn't much to get word out there and if it helps just one person, it will be worth it. I have time on my hands until I go back to Uni. Hoping they'll agree to me defering to September. I need to call the course leader this week to discuss my options. If not, I guess I will have to re-apply and start over but I am willing to do that.
  10. 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.
  11. diane177432
    Just won a bid on E-bay for a bike. Hopefully will collect it at the weekend and I can start cycling to lose some pounds or build up the muscle. Steve and I have always fancied cycling at the weekends especially in the Summer as the countryside here is gorgeous. I am trying to bid for a bike for Harry as the one he has is too small. This is the first time I have bidded on e-bay - can get very addictive but I am making sure I have cut off points as I don't have alot of cash right now so trying to grab a bargain!
    Steve is off today so hopefully after I have sorted a few things out we can go to the garden centre. I have been trying to do Mum's garden and need some bedding plants to spruce it up a bit. She has about a dozen nice pots but nothing to put in them.
    Well, that's it fo rnow. It's 8:15am here and I need to get started...
  12. diane177432
    It started out a fairly good morning, then Steve got a mood on and made a comment and there we are having a row in the car with Harry telling us to be quiet....not good....I felt so stressed, my head was pounding, I felt dizzy, I felt sick - I am not handling stress that well right now - reacting to situations. I hate it! I don't like arguing in front of Harry but both Steve and I got bees in our bonnets this morning and both went for the jugular. Was left with me not talking to him, dropped him off to work and we didn't say goodbye to eachother. He still hasn't made contact and I am still stewing...AAAAAHHHHHHGGGHHHH!!!
    Harry has an appointment this afternoon with the Plastic Surgeon. His next back operation is coming up. he has 2 more and then that's it. The mole has nearly gone and he has a long horizontal scar across his lower back. They hope to tidy it all up when he has his last operation. He is such a brave little boy.
    Right now I am feeling very useless, very redundant and fed up with life. I feel very fat, ugly and I don't have much love for myself right now. I know these are just feelings I have today and come this evening or tomorrow I will be in better spirits but right now I feel fed up with life.
    I have so much going on in my head right now. Yesterday I thought I would get some plants and do some gardening. Stupidly I lifted some very heavy pots and strained my head, it hurt like hell and I was nearly physically sick, I was hot and perspiring and shaking like a leaf to the point of throwing up. I have really got to learn to stop when my body tells me to instead of pushing the boundaries.
    Oh well, I am off to wallow in my own self-pity....
  13. 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!!
  14. diane177432
    Its 2:45am and I have been up since 1:15 with a bad tummy. I feel so rough and my head is banging. Just trying to rehydrate myself and I am so tired, I just want to sleep, but the pains are so bad.
    Took loads of photos on my new camera yesterday. Its my 1st digitial camera and I must admit when you see photos of yourself it gives a different perspective. I was saddened to see what I look like. I don't like how I look at all. I just want to be off of these steroids and free of this disease.
    My stomache still resembles a large beach ball - it is such an odd shape and look. My cheeks are bright red and my face is still very round...has Cushings gone...I am really having my doubts lately. I sometimes wonder if they do choose the right route here in keeping the pit gland intact. Would I have a better chance if they had removed the left side as they said they would. Would this prevent further re-growth. I believe so...well roll on the 18th May and I'll know for sure. The only thing I hate is that my endo said my initial blood tests post-op looked good, this is what happened last time round and I still feel like crap this time round.
  15. 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.
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