I have always been a multi-faceted, gifted person.  As a child, I was a soloist for a large church congregation.  I also did some theater work & sang for private affairs.  As I grew up, I continued with musical studies for voice, piano, flute, & tuba.  Later in adult years, I studied pipe organ.

During my teaching years, I was involved in setting up numerous programs, acting and singing in summer theater (I was Bloody Mary in South Pacific at one time), and many other activities.  My interests included gardening, traveling, writing, craft of all kinds, including quilting, visiting antique auctions, collecting, painting, etc. etc. etc.  I also involved myself in senior citizen activities and was founder & director of church senior activities, both 60 Plussers in PA and Autumn Leaves in NJ.

After retirement, my interests included setting up a Head-Start program for homeless children & activities for the Mom’s in NJ; Writing and directing Environmental Workshops for children, as part of a Stewardship Bible School Program; Was Grandma Tzeitel from Fiddler On the Roof, and other minor parts in theater work.; Past president of Senior group; speaker on various subjects from travel, hobbies, environmental issues, continuing education for seniors and musical entertainment for various community and church organizations; Creative Memories consultant and hobbiest, helping others organize their memories, in an acid -free, etc, environment. and NOW, am the Keeper of the Memories for the Family.  The biggest, most rewarding job of all!



A basis, for much of my programs and workshops, has been my extensive travel.  I have visited most of the United States;  Throughout Europe including England, Wales, Scotland, Ireland, Germany, Holland, Switzerland, etc.; Ecuador, including Galapagos Islands, where I spent time learning about the issues, presenting themselves to an endangered diversity, teaching children and exchanging issues and info with them about other cultures; Australia, New Zealand, and Fiji, and many unmentioned places of interest.

Now presented with more serious health issues, I am not as active.  This project is therapeutic for me.  I will answer as many responses, as I am physically able.  I get very tired!  Please feel free to add any of your comments or experiences.

Please don’t think, if you are physically challenged, that you can’t participate in musical activities.  I used a cane to help me stand.  Often had a place to sit when needed.  Lately, I sit on my rollator or wheelchair to sing in groups.  Find a special friend, who will help with your needs, such as stage placement, getting in & out of theater/ church.  Using a high sturdy stool, will support your weight, if solo work is done.  Remember Rosemary Clooney?  I believe in her later years, she sat on a stool to sing.  “WHERE THERE’S A WILL, THERE’S A WAY!”

Now, I have embarked on the last journey of my life.  It is a difficult passage, as I am so aware
of the odds & how so little control I have with my own life.  Dialysis & eating have become my
focus.  So in order to continue on a
healthy life journey, I decided to chronicle in a diary important events with
recipes, so as to help others like me on their journey to wellness. The two,
side by side have gained such importance, to our survival.  One cannot do the work, without the other-


ALICE BLUE GOWN sung by alice




It has only been about 4 months, since I was hospitalized for Pedal Edema.  The edema seemed to be under control, until recently.  Much to my chagrin, this terrible affliction has come back.  My feet are swollen again.  My toes are numb at times. Worse the cellulitis has appeared on my legs again.  For those unfamiliar with cellulites, it can become a serious bacterial skin infection.  I had noticed a red patch on the side of my calf.  It itched & of course, I scratched!  My immediate reaction was that my husband put too much detergent in the laundry again!  Next morning, I felt moisture on my leg, as my hand touched it.  Sure enough the blisters were there, & they were weeping.  It can spread rapidly, not only to legs, but other parts of the body. If left untreated, it can spread to your lymph nodes & bloodstream.  It is caused by crack, or break (my scratching) in the skin, where staph or strep bacteria enter the break.  During the past hospitalization, I was given an antibiotic with the IV diuretic drip.  At that time, I had cellulites all over my legs, for what seemed, FOREVER!

On the subject of Pedal Edema, I got my 4E width shoes at
Pedal Edema
Recently, I have been laid up with tremendous edema of my limbs. My feet were a particular problem, as I couldn’t find shoes that would fit me.  I had 4E wide strappy sandals that I wore for awhile, but then they were too small.  I resolved the sandal problem, by attaching ¾ inch Velcro strips to the straps.  This would have worked if I didn’t have cellultis on feet.  So I found Edema Booties.  You can find these at a medical supply store. At least, my feet were protected.  Be careful in walking, as they are just a loose fitting cover with s sole.  I kept looking for a wider shoe, when in reality, I needed a shoe with depth.
Please share your tips on living with ADPKD. | Tagged: clothing | No Comments »


Polycystic Kidney Patients and Pain Meds
Posted on September 26, 2008 by alicehahn | Edit

I am another of many family members who have inherited AUTOSOMAL POLYCYSTIC KIDNEY DISEASE  (ADPKD).  (See tags)

Pain Medication for PKD Patients

This is good information from the PKD foundation.

“What can PKD patients take for pain relief and what should they avoid?

PKD patients in search of pain relief should not take a non-steroidal anti-inflammatory drug (NSAID) because several factors in these medications can lead to kidney damage … and increase the likelihood of bleeding from cysts. Plus, people who regularly use NSAIDs appear to increase their risk of developing chronic renal failure.

PKD patients should avoid the following name-brand and generic NSAIDs:
• Motrin® 
• Ibuprofen 
• Aleve® 
• Bufferin® 
• Aspirin 
• Buffered aspirins 
• Excedrin®

(Note: Excedrin is marketed for different uses, such as for migraines. It is often paired with other compounds – such as aspirin, caffeine or phenylephrine – PKD patients should not take.

Bottom line: If you have PKD, do not take these drugs or any other NSAID.

The appropriate pain medication for a PKD patient is Tylenol® – approximately 650-1000 mg/day. If the pain is not controlled by Tylenol, patients should talk to their doctors about prescription pain medications. The doctors will suggest a drug appropriate for their situations and monitor the drug’s effectiveness and possible side effects.

from PKD Foundation/ For Research in Polycystic Kidney Disease/ August 2008 E-News

I would love to hear from someone who is living with PKD.  Everytime blood work is done, the elevated creatine test sends you spinning.  The unpredictible results make you live with incredible highs & lows.  People often say, “But you look so well!”  Or others will tell you, that they know someone on dialysis & it isn’t that bad!   Everyone’s experience is different!  I have difficulty in the realization, that when the time will come, my life will be more confined.  I will be dependent on the machine for life.  Due to fact, that this disease, has really hit my family so hard in generations, etc,, that it gives you pause.  We have come a long way, on awareness, but much is needed to be done yet.
Posted on October 11, 2008 by alicehahn | EditFiled under: ADPKD, Medical | Tagged: Dialysis, prescriptions | 1 Comment »



2 Responses

  1. I really like your blog. I’m also a person of size. Many factors have caused it. Reading your explanation of PKD I have something to discuss with my Dr! I had a fiance die in 2004 from Pickwickian Syndrome. Cellulitis was very bad. He had level 4, out of 5. I get some but usually get the antibiotics to treat it quickly.

    I’ve added you to my blogroll. Had seen you fly by on AI a number of times and am on a blog jumping binge this morning.

    Nice to meet you and I look forward to reading your posts! I learned some things!


  2. Dear Dee,
    So glad you responded & like the blogs. I learned so much in dealing with the everyday disability issues, that I wanted to share them with people in need of the info. Thus, I Ain’t Dead Yet! was born, then My Daddy is no More, which is an extension of other blog. You & I are so much alike! I have basically same health issues, plus, am from NJ, like Purple & become deeply passionate about the causes I believe in. My blog has consumed me at this point, as I have found an outlet for my depression & grief, as my husband, as you know has Alzheimer’s & it is getting worse. I am WORKING ON SOME CONTROVERSIAL ISSUES RIGHT NOW LIKE ABORTION. You write very well & as you say, it is what you’re concerned about in the world. I have not been watching too much news lately, as I feel the media has betrayed the American public, with their slanted views of the world events. It just upsets me. But everyone has a right to believe in their own private issues & shouln’t be ostracized for it. I also have “taken the road less traveled.” I love to sing * read Robert Frost’s work. I was always an individual thinker. God bless You! Keep your chin up, eyes fixed on the prize!
    Alice H.

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