Happy Anniversary to Me!

Well, 1 year ago on May 11th, I had brain surgery. My "peapod", aka my pituitary tumor, was removed. So much has happened since then, and I suck at keeping up with a blog - after all, who wants to read about SSDD (same shit, different day)!!

For a few months there, I felt amazing! All the puffiness left my body. I had soft, loose skin, my face thinned out, my weight dropped, my IGF-1 dropped from 1400 to 440. I felt amazing, light, happy, silly and fun. This lasted through about August (2016).... until my knee surgery (see past posts) and the Staph Infection. Then, my IGF-1 started to increase, and rose to 632. Everything started swelling back up, my weight returned and then some, fatigue set back in, the HOT feet, and of course, the joint pain! Even after my knee got better, my joints hurt... and now, my left knee is worse then ever. I keep thinking... will I ever stop hurting? Some days, the pain is so stiffening and uncomfortable that it's difficult to motivate myself to get out and enjoy life. I needed something to kick start me - to get me back in the mood to travel, explore and get back into finding adventures around every corner! So.... I planned a vacation!

San Francisco, CA

Castello di Amorosa, Calistoga, CA

MILESTONE: December 2016 - Adventurous Spirit was jump started again!

In December / January, I spent almost 2 weeks visiting my wonderful and amazing friend, Danusia, in San Francisco. We explored so much of San Francisco, drove out to Napa Valley and spent 2 nights in Calistoga drinking wine, and then drove down to Monterrey, CA on the 17-mile drive. Had such an amazing time and although there were days where I had to rest a lot, I started feeling like my old self. I definitely jump started my old self back up again - and re-gave myself that itch and yearning to travel and explore! (Thank you, Danusia, for helping me!!)

Sylva, NC

Atlanta, GA

At the end of January / beginning of February, I spent 2 weeks (basically) in Atlanta for training for work. The best part of the trip was getting to get out to the North Carolina mountains over the weekend! I drove up to Sylva, NC and spent time with Pat & Bern on Friday night. Saturday, my lovely friend Karol Taylor came out for breakfast and to hang out for a few hours with me.. then I drove through Great Smokey Mountain National Park and did some sight seeing, and on Saturday evening, Traci Harding met me in Asheville for the night to explore Asheville! The weekend ranked up there as one of the best weekends ever as I got to spend time with so many wonderful people! While in Atlanta, I got to meet up with Monica, Peter and got to catch up with Alex after not having seen here in years! Yeah, it was an amazing trip overall!!!



Back in December, my Endocrinologist, Dr. Barkan, put me on Cabergoline in hopes that my IGF-1 would decrease, and unfortunately it only went down to 590 - not enough to stay off meds. So, on March 3rd, I got my first Somatuline Depot injection, which I will continue to get every 28 days for the rest of my life most likely. After just 2 injections, we had my IGF-1 retested on April 18, and my numbers dropped down to 278!! (Normal range is between 94 - 252ng/mL)

MILESTONE: April 18 - IGF-1 drops to 278

February 24 marked 1 year since I received a phone call from Dr. Chad Coe telling me that I have Acromegaly and letting me know what that is, what is involved and being incredibly patient with me for me to unload all my questions on him. My Asian Doogie Howser, how I miss him! (He moved to the Cincinnati area). I really should have celebrated that a little more!

MILESTONE: February 24 - 1 year anniversary of my Acromegaly Diagnosis

Some more important milestones for me to celebrate:

MILESTONE: March 31 - 1 year anniversary meeting my University of Michigan Pituitary Team

MILESTONE: April 29 - May 1, 2016 - First Acromegaly Conference - First time truly connecting with my disease, and meeting others like me, who understand and accept me!

San Diego, CA

For those of you who know me, know how much I love adventure and to travel. And, as I said, thanks to my San Francisco trip, and thanks to my boss for letting me to go a conference, I went out to San Diego, CA for the 2017 Scrum Gathering. Now, I won't go into detail about what that is, because it's something I'll nerd out about, let's just say, I spent several days surrounded by geeks like me, talking about the geeky things I love talking about! It was such an amazing and motivating week! After the conference, I spent 3 days exploring Southern California, driving up to see my wonderful friend, Cathy Scott, in Julian, then spent the night outside of Joshua Tree National Park, exploring the park the following day. The last night, I spent in Temecula, going out to dinner, and then hanging out at a wonderful winery on Saturday (Danza del Sol) before heading back to the airport.  And - well, yeah, I did sign up for another wine club!!! (yeah!)

Hystocation

MILESTONE: Hysterectomy, April 28, 2016

Now, going back to health stuff...... in October 2016, I was supposed to have my hysterectomy. Well, as we all know (unless you didn't read about it), that had to be delayed due to the staph infection. So, on April 28th, the day finally arrived to get my uterus removed! Oh joyous day! The day went well, and long as my surgery was delayed 4 hours so mom, Tree (who drove in from MN to help) and I hung out in my spacious hospital room until I got rolled into surgery and got to meet my team and the DaVinci robot! By the time I got out of surgery, it was easily 9pm! That night, I spent the night in Butterworth Hospital in Grand Rapids (what a very nice room I had!), and in the morning, we said goodbye to Tree and mom and I loaded up and drove back to Leonard, MI for recovery. All in all, the surgery went very well! It's now  been 2 weeks (as I write) since, and I have only experienced moderate discomfort. I am truly thankful as I have heard some pretty horrific stories of pain and discomfort after a full hysterectomy (yeah, I had the whole kit 'n' kaboodle out - my doc couldn't give me a good enough way to test for ovarian cancer, so took those puppies out, too!).

OMG I forgot to mention.... and then there was the emergency Appendectomy on February 22nd in South Haven! Oh that was fun times! I went into the ER with severe abdominal pain... thought maybe one of my fibroids burst. Nope. Appendix. Never a dull moment apparently.

So, here I sit, at my moms, recovering from yet another surgery to removed another useless body part feeling better than I expected. I wish I could say that I feel like a totally different person, but maybe I expected miracles!? I will say, I am less puffy than I was 363 days ago, my shoes fit better, I feel lighter, I am not as down and out, not as fatigued, my skin no longer itches as much as it did then, my ankles are no longer swollen...  But, my feet are still hot as hell at night, my joints ache every day and the anxiety / chest pain still comes and goes as much as it did before...

Original Symptoms List that I read to Dr. Coe that got me diagnosed:

• Swollen ankles
• itchy skin
• watery eyes
• dry eyes
• lack of happiness
• sleepless nights
• snoring
• Hot feet
• joint pain
• chest pain/anxiety on left side
• muscle weakness
• feet wider

Mind you, after learning about Acromegaly, there were quite a few other symptoms that I didn't notice or mention that I had (some are just FUN, yeah, right!):

• enlarged bones in the face, feet, and hands
• excessive hair growth in women
• an enlarged jaw or tongue
• a prominent brow
• excessive growth spurts, which are more common in people who’ve had abnormal growth before adolescence
• weight gain
• swollen and painful joints that limit movement
• spaces between the teeth
• splayed fingers and toes
• a hoarse, deep voice
• headaches
• profuse sweating
• body odor
• enlarged sebaceous glands, which are glands that produce oils in the skin
• thickened skin
• skin tags, which are noncancerous growths

The past 14 months have been the longest year in a long time - it feels like a lifetime ago that this all started. Well, to be fair, looking back, Acromegaly probably started about 2004, so I guess it was a lifetime ago that I started trying to find out what was going on (and hearing that it was all in my head!).

So, here's to many years of learning more about myself, Acromegaly, exploring, traveling, understanding and listening to my body and hearing what it's saying! Someday, I hope to feel normalish - to be able to walk without pain, and recognize myself in the mirror again (cuz I don't always now!)

Hope you enjoyed catching up with me! And, as always, thank you for your support! Love you all!