Greetings Fellow AcroMonsketeers
September 4, 2009 3:48pm
I'm having connection issues (relying only on VZW wireless isn't working well), have discovered a new therapy (knitting beaded purses - see …
PapillonRoseBleue
4:45pm, April 13, 2009
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About Me
PapillonRoseBleue
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About Me
I'm a high school French teacher. My 3 children are all married and busy raising my 9 grandchildren. The 10th grandchild is on her way
I'm a high school French teacher. My 3 children are all married and busy raising my 9 grandchildren. The 10th grandchild is on her way
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Interests
Life, family, DANCING, reading, traveling, learning, biking, canoeing, tubing. I'd like to get into geocaching. I'm trying to focus on the positive aspects of life and trying to learn to reduce stress and I am interested in learning about alternative medecine and healing and meditation. The problem is to find the TIME. I am trying to become the best I can be and to be as healthy as I can be and to be as helpful as I can to others along the way.
Life, family, DANCING, reading, traveling, learning, biking, canoeing, tubing. I'd like to get into geocaching.
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Journal
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This entry is private
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Who I Am Makes A Difference
July 17, 2009 4:12pm
This story was featured in a Chicken Soup book a long time ago. It was very touching then, but the impact it has in this video is even more amazing. …
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Song: Ingrid Michaelson "Be OK"
June 28, 2009 4:00pm
Here is a link for a song I'd like to share with everyone
Ingrid Michaelson "Be OK"Thank you Basketmoon for sharing it with …
This entry is private
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Hugbook
Miss You
a late night after a long week....counting the blessings led to thought of all the times hugs from you in times past that then brought paz...and so hey do again and so der rose azul do you....
Shout Out
Please give me a shout out when you are back online. I'd love to catch up with what is happening in your life. Hugs Ohana
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Moment of Peace
Stopped back to see what's happening in your wporld. Are you teaching this year?
Hug
Hi Rose! Things here are going well at the moment. I hope things are good in your piece of the universe too. Sun is shining here, how about there?
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Little Love
So good to find you back with us. I'll look for your journal update later and maybe catch up with you. Hope you have a good day. Hugs Ohana
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Photos
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Support Groups
Close Acromegaly
I had severe headaches w/ an aura for months so I was referred to my ophthalmologist who referred me to a neurologist. In the meantime my GP ordered an MRI but the radiologist MISSED the tumor! The neurologist saw the same film a month later but spotted it so he ordered more MRIs to focus on the pituitary gland. He referred me to an endocrinologist who diagnosed me w/ acromegaly by IGF1 levels way out of range. I think the increased shoe and ring sizes were the biggest clues we missed.
Treatments
- Surgery, Brain Working / Worked
- Since the transphenoidal resection of the macro adenoma on 5/27/08 the debilitating headaches have become less intense, the facial features have improved, swelling in general has decreased, IGF1 levels were normal for less than 6 months and are climbing now, diabetes has been "cured", it's classified as pre-diabetes, now, hypertension has improved tried no meds, did't work. As I'm approaching the 1 yr. mark, my hair is falling out & I'm looking at meds to control IGF1 &/or radiation(gamma knife)
Close Migraine Headaches
Migraines cripple my life and seem to be a family curse that each of my children has inherited and some of the grandchildren are getting them, too.
Treatments
- Avoid Certain Foods / Chemicals Somewhat Helpful
- Usually if I have total shut everything down migraines i have pattern of poor eating, no sleeping and & high stress, but, if I break that pattern I can usually avoid the migraines
- Fioricet Somewhat Helpful
- It was used temporarily prior to brain surgery so I would stop using Darvocet for pain relief for sinus headaches. I still prefer Darvocet for the sinus headaches but the Mayo doctors asked me to stop taking it when they upped the dosage of Topamax to 200 mg.
- Imitrex Working / Worked
- Injections work, but leary of using them because of possible heart problems since I live alone and the pills don't work
- Inderal Somewhat Helpful
- reduced the intensity & frequency of the migraines but made me MISERABLE when it left hypertension uncontrolled. In retrospect, it may also be because I had severe diabetes at the same time that was undiagnosed.
- Topamax Somewhat Helpful
- This worked well for a while and reduced the intensity & frequency of the headaches once I was up to 200 mg per day dose but I'm losing my hair and my words and that's not so great as a French teacher. Some of the cloudy thinking seems to be clearing up as my body seems to be acclimating to the drug. Does anyone know if the hair loss is permanent? In any case, I'll continue with the "Dopamax" because I would rather not have headaches & there are wigs. Update-it doesn't seem to work anymore.
- Zomig Working / Worked
- This is what I take now when I have a migraine despite the Topamax. It seems to help. Together, they are helping me maintain some semblance of a normal life. I can get through a day at work, get myself back home, or manage to get past the pain and get to sleep despite a migraine.
Open Caring For Aging Parents
PapillonRoseBleue hasn’t entered any details for this support group.Open Chronic Pain
I have a rare disease, migraines & suffer from various types of pain. I was scheduled to go to the Pain Clinic at Mayo, but I don't like the idea of never being able to get pain meds anywhere else once I have done that, so I will be cancelling.
Treatments
- Acupressure Working / Worked
- I learned a trick from my chiropractor that helps some with headaches. He said the Chinese name for the pressure point translates to Heaven's Gate.
- Chiropractic Adjustment Working / Worked
- This is another incredibly helpful aspect of my care. I know I would not have survived as well without this and I am very fortunate for the help I'm getting for my TMJ issues & my joints & more. Luckily my insurance covers it for now, but the school board is trying to take away our insurance & we have no contract.
- Heat Working / Worked
- I use a hot pack on my face for sinus infections and also hot wax on my wrists for carpal tunnel syndrome symptoms and my feet for plantar fascia symptoms. I'm still looking for the mini gel packs they recommended at Mayo that can go inside a stretchy knit sleeve to tie over my TMJ area that they use in their patient education, but no longer have in the Mayo Clinic store.
- Hydrocodone Working / Worked
- don't like the way I feel when I take this & am trying not to use it when I can avoid it
- Oxycodone Working / Worked
- don't like the way I feel when I take this & am trying not to use it when I can avoid it
- Physical Therapy Working / Worked
- I had some degree of help with physical therapy for some of the issues. The nature of my disease has created a multitude of them & it would be helpful to have more physical therapy than my insurance company would like to authorize.
- TENS Working / Worked
- I think this may be something that a PT used at Mayo Clinic, in conjunction with steroids, that seemed to work miracles for the TMJ issues and even restored hearing. I need the ORDERS as she said what she did would have a cumulative effect.
- Topamax Working / Worked
- This is giving me a great deal of relief from crippling, debilitating migraines. Unfortunately there are a number of side effects. It is called Dopamax for a good reason. It makes me foggy headed. I lose my words & that's definitely not good for anyone and worse for someone who makes her living TEACHING a language ;-(
Open Trigeminal Neuralgia
Trigeminal pain related to skull changes related to aromegaly - will complete the treatments tried later
