A new lifestyle magazine called, Harmony, is on the news stands in high end health food stores such as Whole Foods and Sunflower Market, as well as Wal Mart. Harmony, geared towards working women, gives tips on finding the balance in our lives to focus on body, beauty, fitness, family, and food. There is also a section on health, and I was interviewed to discuss my journey with Conn's disease.
Unfortunately, the magazine is not on-line, so you have to purchase it to read the article. On page 94, under the title "Medical Mystery Illness," I discuss my adventures with this rare and frustrating disease. It was great to be able to speak honestly about a hormonal illness so few doctors understand. Hopefully it will help anyone out there questioning their symptoms.
Buy it and spread the word!
http://www.foliomag.com/2011/source-interlink-expands-womens-market-new-magazine
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11 comments:
I wanted to leave a blog to go along with yours but I didn't know how. I wanted to share my struggles with this disease as well. I have to admit for the first time I didn't feel alone after reading some of these entries. I was starting to wonder if the extreme fatigue and depression was all in my mind. This disease is so isolating that I often fall so deep into depression that I literally don't want to be alive sometimes.
After years of misdiagnoses for roughly six years we figured out that I have the hyperplasia version of this disease... so no surgery for me. Just a constant string of medication day and night. I take Eplerone, Amiloride, Norvasc and finally Bromocriptine for a putuitary tumor that appeared a year after the Hyperaldosteronism diagnosis.
I recently moved to a desert environment and my body is not adjusting. I'm so tired all the time and I don't know how to get my energy back. I stay home more often then none because I hate having to explain why I'm always so tired. I tried being open lately and talking about it but no one really understands.
Thank you so much for creating this blog.
Sixxx2,
Thank you so much for sharing your comments. It seems so many of our stories are so similar, they begin to mirror themselves.
I ,too, moved from a humid environment to the southwest desert. I moved during the winter and had a very hard time with fatigue. However, since early spring, I have seen vast improvements and my physical strength is now stronger than it has been in a very long time. I feel almost human again~
I hope you gradually start to feel better soon too, hang in there, it WILL get better. The most important advice I have is getting at least 30 minutes a day of activity. It clears the mind and slowly will begin to build up your stamina.
Send me a link to your blog and I will post it.
Until then, take care. Sending positive energy your way.
~Carole (Flower Spy)
Very interesting
Thank you so very much for your blog. It is the very first time I have ever been able to hear from someone else who has gone through all this.
My adrenal glands both enlarged as my kidney function was shutting down. I had a very large non-malignant tumour in the right kidney. The kidney was removed but my Adrenal problems persisted.
A tumour was then discovered on my left adrenal gland and that gland was removed. However, I still have all the nasty symptoms of Conn's although I am on several prescription drugs to counteract them, as my remaining adrenal gland is so enlarged.
It was just so good to see that I am not alone. When you have never met or heard of anyone else who has had this problem it is so easy to wonder if it is in your head.
The fatigue never seems to leave.
The reaction to emotional stress and occassional depression can just fill you with so much self doubt. Numbness of hands. Muscles that ache and limbs that don't move the way they should. Headaches that make your eyes water.
Ah... it is a fun thing we live with... But we live.
I am always grateful that the problem was finally diagnosed and treatment started.
Thank you so much for helping me to feel less alone.
I too wanted to say thanks for the blog, it has helped me too - misdiagnosed for at least 7 years..
I wanted to ask, if you saw this, how soon you expect to be better after the adrenalectomy? I can get no answers and it is very hard. I'm five weeks post op, BP is up and down, but off all medication (I seem to be having some reaction to stopping a beta blocker which I don't think is helping). I feel a bit less tired and much less weak, although I still have a horrible facial headache that never, ever goes, plus some brain fog. I'm starting to wonder if this is caused by something else..
Bizarelly my potassium levels were never too low so not sure why I've had the symptoms I've had.
Thanks again for this blog,
I have already read your knowledgeable and mysterious content about medical illness, it is really adventures...
Amazing Posts...
Thank for sharing this story. your story is full of sorrow. We can feel your emotion.
I just found your blog and read most of your posts. They were very helpful. I started having low potassium and high blood pressure 11 years ago but tests for aldosterone were normal until 5 years ago. Then I had a CT scan and the vein sampling test. I had tumors on both adrenal glands but one was producing much more aldosterone so that one was surgically roved 4 years ago. I did well until last fall when I started having weakness and low potassium again. I just spent three weeks at Vanderbilt for tests and even though the aldosterone is not showing up yet because it is episodic they are pretty sure I dealing with the same problem again. Like you I have also noticed I cannot eat sugar or drink caffeine or alcohol and need to eat every couple of hours. It is like losing the adrenal gland leaves your body extremely sensitive and everything is a balancing act. I also rely on exercise for help in that I usually walk 3 to 4 miles a day but since this new episode I haven't been able to do anything. I will be returning to Vanderbilt in a week to discuss the options. They have even talked about trying to remove just the tumor and leave the rest of the gland. Thanks for being willing to share your story.
Julie, thanks for posting. I am sorry you are going through the "trenches" of the aldo-wars. I wish you well at Vanderbilt. Did you visit the 2 support group websites I listed on the front of the blog? They can be helpful while you go through all the testing and sysmptoms.
Peace
I was diagnosed with bilateral adrenal hyperplasia 25 years ago after suffering from uncontrollable hypertension for 9 years. Three blood pressure meds simultaneously and readings of 200/160. I finally would up as a med student study case at Hershey medical center where an intern noticed my low potassium levels and followed up to a diagnosis.
Initially I was put on a central nervous system depressant and told I would never work again. Luckily I went to a different doctor and asked him if there was another option. He started experimenting with spironolactone and after 5 months of trial and error coupling it with various BP meds I wound up on a dosage of 125mg/day (25 mg every 4 hours during waking hours) an 160 mg of Diovan. This is working quite well for me. I do have many of the symptoms described in these comments but not as severe.
Supposedly the spironolactone prevents the aldosterone from getting into your system where it does its damage. If I miss a dose I feel the belligerent irritability coming on and I know the &*%# stuff is getting through. Sixxx2 may want to explore this regimen with his doctor. It is not without risk, but so far I have not had any form of carcinoma.
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