Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Well, 2014 is history. Next week it will be a full 15 years that I've been battling this beast. In 2000 I finally had answers to what was going on......little did I understand just how life altering that one word was going to be. Acromegaly. One of those terms you don't often hear and one, most of us knew nothing about.
It is what it is. None of us can turn back the clock, heck we can't even do anything about what happened yesterday. Tomorrow is just as out of our control, so we're left with today. Today we have some control....not so much over the beast, but how we respond.
So...with that said, what are your battle plans for this year?
For me, my strategies are simple. I will face each day in a 4 prong defense.
1. Medical. I will be proactive. I keep track of my numbers, appointments, test, results, everything. My morning starts with reading my BP and RPR (resting pulse rate), check my weight and a self analysis of how I'm feeling. What hurts, what's stiff, pain, etc., etc....at 8:00 I take my morning meds. Evening meds are taken at 8:00 pm. Everyday the same. Everything gets recorded in my daily journal.
2. Health and Nutrition. Breakfast, lunch, dinner and a snack mid afternoon and before bed. Healthy food. Proteins, a few carbs, fruits, veggies, minimal processed sugar or flour.
3. Exercise. Every other day I ride 5 miles on the recumbent bike. Some days I do it in under 25 minutes....other days it can take 30+ minutes. Depends on the pain levels. On the off days I do the Tai Chi routine for beginners and seniors. While I'm riding I do upper body work out with the stretch bands or light weights (5 lbs).
4. Mental and Spiritual . Each day I remind myself that my only option is keeping the Beast under control and making the most of that day. Yesterday is gone, tomorrow is but a dream.....today is what I've got to work with. And I listen to my body. I accept my limitations (and there are many now). Fatigue, pain, cognitive, memory, coordination..... they are all issues and they vary from day to day. I've learned to say no. I've learned that if I fall asleep on the couch at some family function that's okay. I've accepted the fact that on the outside I may look fine and this confuses family and friends. i have accepted the fact the I and the Beast are forever attached to each other. My positive energies are better than my negative energies for me. There are few battles worth wasting my limited energies on.....politics, religion, life styles, crime, etc., etc., I don't have the energy to argue them and it's a waste of my time. I pick my battles more carefully. I look for and appreciate the little things and try to forget the failures and disappointments.
Hand in hand.........I'm hoping that 2015 will be a better year than last, but for right now......I'm working on Thursday.
It is what it is. None of us can turn back the clock, heck we can't even do anything about what happened yesterday. Tomorrow is just as out of our control, so we're left with today. Today we have some control....not so much over the beast, but how we respond.
So...with that said, what are your battle plans for this year?
For me, my strategies are simple. I will face each day in a 4 prong defense.
1. Medical. I will be proactive. I keep track of my numbers, appointments, test, results, everything. My morning starts with reading my BP and RPR (resting pulse rate), check my weight and a self analysis of how I'm feeling. What hurts, what's stiff, pain, etc., etc....at 8:00 I take my morning meds. Evening meds are taken at 8:00 pm. Everyday the same. Everything gets recorded in my daily journal.
2. Health and Nutrition. Breakfast, lunch, dinner and a snack mid afternoon and before bed. Healthy food. Proteins, a few carbs, fruits, veggies, minimal processed sugar or flour.
3. Exercise. Every other day I ride 5 miles on the recumbent bike. Some days I do it in under 25 minutes....other days it can take 30+ minutes. Depends on the pain levels. On the off days I do the Tai Chi routine for beginners and seniors. While I'm riding I do upper body work out with the stretch bands or light weights (5 lbs).
4. Mental and Spiritual . Each day I remind myself that my only option is keeping the Beast under control and making the most of that day. Yesterday is gone, tomorrow is but a dream.....today is what I've got to work with. And I listen to my body. I accept my limitations (and there are many now). Fatigue, pain, cognitive, memory, coordination..... they are all issues and they vary from day to day. I've learned to say no. I've learned that if I fall asleep on the couch at some family function that's okay. I've accepted the fact that on the outside I may look fine and this confuses family and friends. i have accepted the fact the I and the Beast are forever attached to each other. My positive energies are better than my negative energies for me. There are few battles worth wasting my limited energies on.....politics, religion, life styles, crime, etc., etc., I don't have the energy to argue them and it's a waste of my time. I pick my battles more carefully. I look for and appreciate the little things and try to forget the failures and disappointments.
Hand in hand.........I'm hoping that 2015 will be a better year than last, but for right now......I'm working on Thursday.
After nearly 2 years and juggled dosages, I have come to the conclusion that the somatuline side effects are almost as bad as the acro. I now stretch to 6 weeks between 90mg shots, and the best weeks are the 2-3 closest to getting the next injection. Soooo frustrating. Our insurance will change in the summer, so that might (in turn) change the therapy. It aggravates my lifelong marginal thyroid issues, too.
What is your tumor status? Can't recall.......
I was hoping that, with aging, things might settle a bit. It is wearing. Your program looks ideal. Are you doing any design work....or something else that speaks to your soul??
I've really curtailed my driving.........stick to known routes (grocery store, Home Depot, Lowes, doctors) not much more and I keep my phone with me. The GPS Driving app is a must for reminders about directions. I still find that more frequently I can get disorientated and not recognize where I am very easily. It passes pretty quick but still scary at times.
April I go in for a year check up and MRI....the headaches are back almost as frequent as before the surgery .... not as severe, but still worrisome.
I am still on the Somatuline (90 mg) and have found that letting the med come to full room temperature before injecting has really helped...........long term side effects are anybody's guess. For now the IGF-1 levels are excellent.
My program seems to be working........the key notion though is moderation. Fatigue is still and I guess, will be with me forever, a factor. I had the brain surgery in April of 2014, had the hip replacement surgery in May....went through the rehab and all and then in September we kicked the house renovation into full gear. Spent 4 months living in the RV while contractors completed the electrical and hvac.....then we did the insulation, drywall and the finishes. Slow going when you can only work 2-4 hours before you hit the wall........throw in the breaks about every 30 minutes and you get the picture. Sure won't ever be making a living in construction again.......thank Gawd. Those years are way passed me now. But we're back in the house and getting settled and slowing down. My studio is back in order and I've actually got a couple of paintings going........we'll see.
We are trying to get to the renovation of this house for a number of reasons, not the least of which is for the long term benefit of my disabled daughter (age 20). We took some damage from Hurricane Sandy are now looking at raising it, too. My long time friend (a no longer practicing Interior Designer) who lives in Kansas City is reviewing the plans. Now she mostly nurses sore hands and paints with pastels these past 10 years. *SIGH*
What is your preferred paint medium? Until just this past year, I did decorative painting (acrylics) on Monday morning. It was sort of my 'release' from dealing with my daughter's care. AFter 15+ years, I've drifted away from it. I did lots of furniture pieces, mostly old but some new, like a toybox and step stool. Far from sophisticated, it was a break from life, a chance to send my brain in a different direction. Given time, I would probably revert to watercolor, which allows for experimentation, albeit 'quick!'
Part of the problem with decorative painting (besides needing to do something different) was the difficulty of my hand going numb with the paintbrush in it. Add that to sometimes being in an awkward position when painting a larger furniture piece, & you get the frustration.
Irene (my design friend) finds the pastels rewarding because of the flexibility in holding them. She is a far better trained artist than I, though, and is able to quickly 'lay the color on the paper. Pastels, by nature, require less 'detail,' and work well for her. Still, it took her well over a year to be comfortable with the medium; she was a good oil painter years back.
The headaches are a concern. I get them at times, but more like you described pre-op: a few but not debilitating. Does your doctor (endo or neuro) still suspect the somatuline? Last time, it was so cold here that I took it out of the refrigerator & let it sit on the heated front seat for the 1+ hour drive to Phila. My best injection so far!!
I'm just now getting back to my fine art passion....thirty years in the design studio left little time after work for more creativity. But now that I'm on full disability and have all the time in the world (other than the renovation) I'm getting back into the groove......slowly.
Years ago, I bought some wildlife art from a retired older man who lived in the area. He had submitted his work for the national duck stamp a couple of times but did not win. The subject matter was not really my first choice, but he combined his water colors with a gouache to achieve detail unlike any watercolor artist I ever saw. He painted an old turquoise mason jar that I decided to forego in favor of a pair of chickens. It's been 20 years & I still think about it.
At least there is some advantage to 'retired & on disability.' Are your coordination issues resolving sufficiently for you to mix your paint potions? I certainly hope so.
Sometimes I cheat and use just plain old tempera paint to mix with the egg yolk, but the end result isn't as good as using pure pigments.
Right now I'm working mostly in just normal watercolors with the larger brushes.....my control of the smaller brushes is still somewhat limited, but it's getting better every week I think. One good thing is that it has forced me to be more loose with my work. Something I've struggled with over the years of doing architectural renderings where mostly the edges were always hard and crisp, so this has been a good forced exercise to loosen up more.
In high school home ec, we used food coloring to dye egg yolks into a paint for Christmas cookies. My grandmom was a cookie baker (old school Italian), but I'd never heard of 'egg paint.' (The world was still fairly small in the early 70's)! It fascinated me so much that I've done it a number of times & in different ways, but always in the kitchen. I had no idea that it would bind pigment into an ideal consistency....though I am aware that the golden color of the egg has no bearing on the end hue. That fact alone always fascinated me. I find it quite interesting that the yolk yields such a thin consistency. Nature's fats have amazed me numerous times in life!
I TOTALLY understand your point about watercolors and the need to loosen your style. It is also my greatest challenge. While I would not mind the opportunity to pursue it, for me it would be work.....and I would have to do it multiple times per week with dedication. My life just isn't there right now.
Though not an architect, I did extensive calligraphy in years gone by (before hand pain). The slightest error in the angle of the pen and the entire word looks like it is in a different hand. The dichotomy is that I am very free with assembling color and form, preferring to start with 'wrong' combinations and design them into unpredictable executions.
But, I envy you. Pure pigment, esp in powder form, feels like a new box of Crayola crayons when I was a kid. It just makes me want to do a 'happy dance.' Not sure if you have an iPad, but there is a free wallpaper app that I enjoy. Shortly after Christmas, I found a picture that is powdered pigment in a grid, just piled like colored pyramids. Thrilled it was free, but I would have paid for it in a minute!!!