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  1. Kristen, the best thing I can say to you is: don't be so hard on yourself. It's okay to get down about your lot once and a while but if you stay there too long, your soul gets crushed under the weight. So, no matter what, find those little joys that keep you going to remind yourself that there's more to your life than this illness. Then, you'll feel better.

    Trust me, this comes from a guy who beats himself down way too often.
  2. Originally posted by MacStripey:[..]

    no, not always. less and less lately, to be honest. but what choice do you have really.... I hate all this and I'm so tired of it all - but if I think of those who are far off worse then me, it all looks better, you know
    And hell yeah, I deserve that monster of a king size pizza now


    Sergio, July 7th is still valid. This Thursday morning at 0915. I'm so hoping for some answers, whatever direction.
    My mom has weak veins, too, whenever she needs to be taken blood, I cringe just from thinking of it. They don't try the arms anymore, they always go directly for the hands, which is truly painful. But she never says a word. You can learn so much from your parents.... well... in some regards, that is. In others.....


    Hi Kirsten, thanks for the update! That's a lot of visits ... this is a lot to cope with! So I think you certainly deserve a giant pizza (as well as loads of hugs from everybody at U2start). I think you are coping really well with everything - I guess that some days are meant to be not as better than others . Thumbs up for the visit on Thursday - I really hope (and I am confident that) there will be less and less visits from then on!

    All the best!

    Julien
  3. Kirsten, i wish for you the best, im not great with words but you know after major surgery you have good and bad days emotionally, and you for sure had major surgery, and with you having had a pituitary tumor things are out of sync more than most i would think, i hope it gets better for you soon, it just takes time, more time than you want it too im sure , hope your mom is doing well too Hugs to you both, Kathy
  4. Great hearing from you again Kirsten! I'm sure the worst is over, so keep being positive

    Greetings from Brazil
  5. geez, you folks leave such great warm comments here and I really should answer to that more often and in detail. Promise I'll do that soon and more often.

    but as for today, I bring




    1) I had the MRI scans done and took the results to the doctors who did the surgery in March. The main point is: they are 100 % satisfied with what the images show!! I could see that about half of the tumour could be taken out, the other half will remain inside as it surrounds a major artery. The surgeons were very satisfied with what could have been taken out. My visual nerves, the damaged one and the still good one, are now completely free again. No tumour anymore that presses against them. So if the visual nerve of my right eye is ever going to heal, it now can do so. If it will, time will tell, but the chance is there, so yeah

    2) An important question for me was also answered by the surgeons. As the remains of the tumour surround that major artery, of course I'm scared thinking what if the tumour grows again and somehow, you know, squeezes the artery until the blood can't flow anymore. A thought that has brought me many sleepless nights lately. One of the surgeons said this could happen, but if so, it would over a very long time and slowly - and as there are 4 major arteries in the brain (they told me), the other 3 could take over the blood flow of the one surrounded by the tumour. All very theoretical, but at least it brought me some release. I'm glad though if this won't happen anytime, thank you very much

    3) The next MRI check will be done in 6 months from now on, so in early January. And in 6 months from then on, etc. All that matters now is that the thing that is still in my brain won't grow again. Fingers crossed.

    4) I had a major test at the endocrinologist last Monday, without the hydrocortison, to see if the p.gland works alright without medical help. Long story made short: all test results were perfect so the doc told me today I can stop taking the hydrocortison pills. I'll only need them in "emergency" situations like a heavy flu or fever, all things that bring stress to the physical system. *wooot*

    5) no hydrocortison anymore means --> no more "water" stored in my body anymore. You wouldn't believe what cortison can do to you. Since the surgery was done 4 months ago and I had to take this stuff, I have put on A LOT of weight. Most of it water though. I look like..... I've never looked before. My cloths don't fit anymore, that should say it all anyway, now I have hope to get rid of all this extra weight once the h.cortison won't poison my body anymore.

    6) no cortison anymore will HOPEFULLY mean --> getting my blood pressure and heart rate under control again. Often h.cortison causes high blood pressure, so I truly hope that over the next weeks I can eventually stop taking all these drugs that keep my blood pressure halfway under control

    7) on a side note: the surgeons at the clinic last week gave me some more documents of my surgery... one of them the detailed report of the actual surgery. In all detail. I mean, really in all detail, I can read what they did during those 4 hours of surgery. Heaven and hell, you can be glad that you sleep during such things. You don't want to know these things

    however....


    main conclusion 4 months after the surgery:

    MRI scans good
    pituitary gland works 100 %

    I'm blessed with the gift of life, that's all I can say
  6. That is some good news The best news is that it will cut down the stress on your end

    Walk on

    PS: I wouldnt dare to read what they did inside my head if it was me
  7. wonderful wonderful .. that's what it's callled marvellous news
    very very happy to hear Kirsten
  8. Great news, Kirsten That's all good, releases all the stress away and now you don't have to worry that much anymore

    Walk on by, walk on through, walk 'til you run, and don't look back...
  9. Kirsten my dear,

    you've made my day, my week, my month....

    I'm extremely joyful today thanks to you!!!!

    It's amazing how suddenly the sun is shinning in a different way, birds sing once more and people haev a smile in their faces....

    I was reading your psot and tears started flowing, tears of joy...

    I'm so happy!!!

    keep enjoying life and celebrating it as you ahve always done!!!!

    my best wishes and best of lucks to you!!!

    you'll be in my prayers and thoughts!!!!

  10. Great news, Kirsten.. I know what you mean about the hydrocortisone; it's a bloody pain in the arse. It's great you won't need it any more.
  11. Fantastic news Kirsten. Absolutely brilliant to hear. I'm sure you're extremely relieved but you can be even more sure that we're all delighted and relieved for you too
  12. Oh God, I just remembered that I didn't answer your last sms Gonna do it now!
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