October 21, 2011

Tell your story: hair loss, music therapy, and lupus and lungs

Planning for the Spring 2012 issue of Lupus Now magazine is underway, and we need your help! Topics will include how to cope with hair loss, the healing power of music, and the effects of lupus on the lungs.

If you have experienced hair loss due to lupus or lupus medications, we would like to hear from you. We also are seeking hairdressers familiar with this effect of lupus, so if your hairdresser has some innovative ways to help with hair loss, let us know! Send your name, contact information, the contact information for your hairdresser (with his or her permission), and a few lines about your lupus hair loss to lupusnow@lupus.org, with “Hair” in the subject line.

Have you ever used music therapy for lupus-related symptoms and/or stress relief? If you have, we want to hear from you. Please send your name, contact information, and a few lines about how you have used music as a therapy to lupusnow@lupus.org, with “Music” in the subject line.

If you have experienced inflammation within your lungs (pneumonitis) or of the lining around your lungs (pleuritis), or any other pulmonary complications of lupus, we would like to hear from you. Please send your name, contact information, and a few lines about your lupus to lupusnow@lupus.org, with “Lungs” in the subject line.


Amanda McCreight said...

My hair always seems to fall out on the sides and at the nape of my neck. Luckily though, my mother is a hairdresser. I recently bought some clip-in extensions from Sally's for 100 bucks. My mom cut them for a layered look and dyed them and my hair all one color. It looks fantastic! I have gotten so many compliments when I wear them. I easilty take them out at night, and they don't mess my hair up as sewn in extension would! Life is good again :)

Dolores said...

I experienced hair loss prior to the diagnosis, now just thins out. I experience Lupus with lots of joint pain and the chronic fatigue. I have learned that rest and sleep are my healers as well as having the mindset that I have Lupus and it will not have me. I work as a therapist and give it my all as it keeps me focused on what I can give back. My husband is my ROCK which help immensely when you have a disease that people are not aware of. He validates me and does everything to make me comfortable when I am having an "episode". He has learned the symptoms and how to approach it. I believe having a supportive, understanding family along with a great doctor certainly helps with maintaining your overall well being.

Nancy G said...

I have hair loss on the top of my head. Thanks to Toppik, hair building fibers, my head of hair looks full again! It has helped me to feel less self conscious. I buy Toppik on line and it comes in many different colors. I tried cheaper brands but they don't work as well.

Sophie - LFA said...

Great stories ladies! We'd love to hear more about them and perhaps feature them as part of the story in Lupus Now. Please email your comment to lupusnow@lupus.org with Hair in the subject line and our editor will be in touch with more information!

Maria said...

Hi,In the middle of a painfull attack, laying on the bed for hours and hours, I played Nora Roberts, lullabye songs, over and over.
I fought the pain by focusing my mind on each instrumental note and each word that was sang....I could not memorize the different sections of a song, due to the effects of the pain killers. After awhile, I did begin to antisapate the different section, and it was that mental music support that made the hours of pain bearable.
((gentle hugs)) Maria

Anonymous said...

thank you for this great post!

michele burrow said...

in the middle of my worst pain day, my boyfriend and careaker mike plays his guitar and sings. he is in a band. i even let them practice when im bad because their music is amazing. how much it helps. imagine your own live band singing for you in your own home.
michele burrow