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Optim
Well it's been a month since the dx. Got the sando shot with some side-effects (fatigue, headaches) for the first 2 weeks. Also felt like in a roller-coaster of emotions - quite depressed, not wanting to look in the mirror, scared about all the acro thing and its consequences and sometimes just attempting to go about the usual routine at work and trying not to think about it. Felt some beneficial effects in the 3rd week (tongue reduced with better control when talking, perhaps my nose went down a bit, more energy). Now getting ready for the surgery planned in 4-5 weeks and feeling either very optimistic and sure that everything will be OK or terrorized about not waking up or having half my brain missing when I do! In any case I've have not told people at work about this; am afraid that if they know they will start looking at me and see the particularities (big hands, big feet, facial features, etc.). Part of me is hoping that after surgery I will lose weight, fit in my old shoes and look better and more importantly that I can just enjoy life without worries!






I think everything you are describing is perfectly normal as a reaction to this. In retrospect to my resection which was done a year ago May 27th, I think I am less afraid of a lot things in life in general for having faced that down. It was probably one of the toughest things I did, but it was OK. There are so many advances that people have made in modern medecine and I did my homework and tried to make sure that I went to a hospital with a good reputation and that I had a highly skilled surgeon. Plus there were lots of people on their prayer bones and I know that made a difference, too. That you belong to this site and can do some homework and read journals and learn AHEAD of time what to expect will put you even further ahead of where I was. If you have sleep apnea and need a CPAP machine for example, don't bother to take your machine with you. I wish I had known that BEFORE I hauled it through airport security. LOL In the beginning, I didn't tell ANYone except the principal and the secretary who had to arrange for a sub and I told my mom I didn't want her to tell anyone else either. There are some people who never move away from that reaction. We are all in this together and we have many similarities and can give each other lots of support and lots of understanding but in the end each of us is alone in our own battle and our own choices for ho we will fight it. If you don't want to tell anyone that is fine. It is up to you. I decided one day that "It Is What It Is" and I've been open and up front about it ever since. I usually keep very much to myself at work, too and am usually the sort of person to reach out to help others, but this changes things. Now I need help, too. I really did last year and especially at the beginning of this school year. If I had kept my cards so close to my chest that no one knew what was going on, I don't think people would have helped me the way they did. There were some people who were like angels who came and did things without being asked and it made a major difference for me. I did do part of what you are hoping to do - with no effort and no special diet I lost an enormous amount of weight. I can still afford to lose a lot more. I think it helps to get rid of that tumor and get the IGF-1 levels under control. I will never fit in my old shoes or wear my old rings or have my old face but within months or maybe even sooner my facial features had remarkable improvements over what they were just prior to the surgery. Even though I have the huge hands and feet, most people don't notice them and I guess I'm lucky that my face doesn't scream "acromegaly" either, even though I think I was undiagnosed for many decades. Here's hoping that maybe you will be wearing smaller shoes and rings and gloves and clothes soon, that you will be looking better and that you will feel like a million dollars. I hope you have an easy time with the surgery and the recovery. I think the only things "missing" will be headaches and misery ;-) Best wishes, Rose
PapillonRoseBleue
Hi Optim this condition is not easy it does put us through so much but just so you know you are not alone through any of this we know how you feel what you are saying.There are some lovely members who will help and also in turn you can share your experiences help others also.Least you didnt put on you went hyper that side effect for me was fun three hours they dont mention that one on their list all it said was maybe some sickness and the D word mind you that was fun but Im glad for myself it has settled down and most of my symptoms have cleared up.But for now a big hug it can get overwhelming but take care all my love JJx.
J0KEYJ
Hi Optim, Im glad you found the group...My name is Annie. I dont have Acro but joined the group while going through the process of ruling it out. Made so many friends, I couldnt leave when I found out I dont have it. Now I'm the group cheerleader! So I wanted to say, your range of emotions is normal for any diagnosis, nevermind one with such unusual symptoms and rare occurance...you probably already know this but still need to hear it every once in awhile! In the case of sharing your diagnosis, thats a very personal decision, but if the people you work with are of any value, which I'm sure SOME of them are, you may find a wonderful support through them. Do you have family to lean upon as well? You will be in my thoughts as you go through this process, and I pray you will come out on the other end feeling much better! You have found a wondeerful place for support! Hugs,...Annie
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