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A warm welcome to my Blog and my hope is that you find comfort in knowing you are not alone with your Acromegaly.

Monday, June 13, 2011

September 2011 marks 5 years post surgery













Haven't posted in a while. Being a mother to 2 children keeps things very busy. Overall, my health has been good. I have been back on my Sandostatin injections every 3 weeks (20mg) right after the birth of my daugther (Aug 2010). My IGF-1 levels have been dropping and returning to normal. Wow, was looking for a picture to post of my family and could only find a christmas picture. I will use this picture taken at Easter of my daughter and I and will update hopefully soon (hehe).

IGF-1 results:

March 2010: 251

April 2010: 210

July 2010: 307

August 2010: 518

Sept 2010: 447


Jan 2011: 275

April 2011: 254


Happy summer and best of health to you!

4 comments:

Starbucks Addict said...

Yes, having a family does keep us super busy :-) I'm so glad to hear your numbers are returning to normal! That's terrific. And yes, it's nice to hear we share similar symptoms. My hubby and kids also know about my acro times when I'll happen to be more irritable, usually right around shot time (I apologize a lot!). I agree it is very wearing on us physically and emotionally. Sometimes I just cry because it's like everything is stressing me at once. And unfortunately my hubby really doesn't understand how social situations wear me out. I don't have energy to keep up with conversations either, it's so weird!! I get really depressed sometimes because I can't really contribute much to conversations, and I feel stupid, which I know I'm not. But I'm too tired, and many times I can't concentrate enough to follow an intelligent conversation. I'll just withdraw into myself and let the conversation flow around me. And I try to plan around shot times to have down time, but sometimes it's just not possible. It's so hard to explain to people, and then it's frustrating when they don't understand, or look at you like you're crazy. I recently made a comment about how sometimes I feel so tired I literally feel and wish I could lay down and die. And it's not that I'm suicidal, it's just that I feel like I have no energy to go any further. I received a positive response from a relative who understood me, and autoimmune diseases run in her family. Whether it's caused by Acromegaly, or Sandostatin side effects, it's a challenge to deal with these emotional ups and downs, and fatigue. I have been doing much better though since I started lifting weights regularly. I have a lot more energy. Good luck to you with managing the symptoms. I'm all ears if you find any good ways to reduce them!! :-)

becky said...

Hi, I'm Becky. While I'm sad to see you have this condition, I am so pleased to read your blog. I am just in the train on the way home from having my first shot of sandostatin. It's so nice to see that although I'm sure you have your down times, that you are leading a relatively normal life and have a lovely family. I also have young children, 8, 6 and 2 who definitely do a good job of taking my mind off of things! I'm not sure how often you check this but I was just wondering how quickly you noticed a difference after you began your injections? I am hoping my hands will reduce in size and that my facial features will go back to normal but I guess I could be in for a long wait. Hope you are doing well at the moment and enjoying time with your family. X

Starbucks Addict said...

Hey again. I wanted to respond to the comment you left on my blog. I'm sorry to hear you're back on the BP meds again. I've been wondering if I'll go the same way. It's hard to keep up a good diet and exercise. I realize I'm trying to break a lifetime of bad habits.

What kind of flushing do you have with high BP? I don't remember hearing that is a symptom. I've had this mysterious flushing for years that no one seems to be able to diagnose. I thought it might be pre-menopause related, but my numbers are good and I'm only 34. I'll feel warm in my core usually, and I flush on my chest, back, neck and cheeks. It seems to happen if I get too warm, or if I'm drinking alcohol or caffeine. I wonder if it's related to things that may raise my BP? I've also had blurred vision at times but thought it was allergy related. I'm probably wrong again and it's the BP. *sigh*

Julie S. said...

Hi Becky,

Sorry, no I am not on my Blog too often. Sure glad that you posted though. You have 3 kids how lovely. Our 2 keep us very busy. I can't imagine how crazy it must be for you. As you wrote, it is a blessing to have our kids/family cause we focus less on our condition. I had Transphenoidal surgery and that's when I noticed the swelling in my hands/face go down. I was on Sando prior to my surgery but I had no relief. However, after my surgery and continous injections (every 3 weeks now) of Sandostatin, my Acro levels are in the normal range. To be quite honest, I only started to feel better (like myself again) 4 years after my surgery. It is a real rollercoaster of a ride. As I wrote in previous post, I hope that anyone who is diagnosed with Acromegaly have a great medical and support system. I really wish you good health and very quick recovery. It's not fun but please know that having the Acro Community to write to and to read their personal stories has helped me tremendously. You can click on the various other bloggers and read for yourself how they combat this big bad Acro monster hehe.
Feel free to write and I will try my best to respond in a timely manner. I'm usually in bed very early ;) All the best, Julie