Paraffin and Scleroderma: Comments on an article about scleroderma.

There is an article about a woman with scleroderma in the United Kingdom all over Facebook and too many social networks to list here. I have a few comments to make. Her methods of skin care work for her and kudos to her for having the time and resources to have a full body paraffin bath every day, but I have a few comments and some alternatives.

picture of oils for skin moisturizing in various   containers

Oil feels nice, but the type of oil used may create more work.
Applying oil can appear to be helpful, but many oil based products only coat, and do not penetrate to moisturize skin, especially petroleum based products. As someone who has used olive oil, Kama Sutra oil and too many moisturizers to name here, I can say honestly that oil coats the skin, leaves marks everywhere and leaves (me, it may vary for others) a dry skin surface in about 15 minutes. Many products claim to have “essential oils”, but if they come in a plastic container, they are not true essential oils.

Undiluted essential oils should  only be stored in glass containers, because a true essential oil will may break down the plastic. The right essential oil can  nourish moisture starved skin because it will penetrate, not coat.  Essential oils can appear more expensive, but you need less of the product.  To find the best essential oil for you, don’t be shy about asking for samples or asking for a low priced sample to take home and try a few days.

Essential oils are not your only option.
A great non-petroleum based cream or lotion works well if you can find one.  I have had great luck with Aveeno Moisturizing cream oil with sweet almond oil and Eucerin.  Currently, I use Votre Vu’s Snap Dragon on my body and their hand cream Duette for my hands because I love it, and I sell it (for full disclosure) so I get a great deal on it.    If you have something that works, don’t go searching for an essential oil.  (If it ain’t broke, don’t fix it.)

Ahhh, Paraffin.  It is nice…
Paraffin does work, but as a full body bath, the first thing I thought, (okay, second thing I thought…)  was this sounds wonderful, but is an unrealistic and expensive option for most scleroderma patients.  A simple hot bath with immediate application of a non-petroleum based moisturizer while wet, followed by stretching or assisted yoga (after drying off and dressed of course) will provide the same benefits.  A hot bath will warm the muscles, making them easier to move, which is the objective of the paraffin bath.  When I first started exercising again in 2005, I would take a shower before and after.  Warming up those muscles before warming up, is good for body and mind.

The professional manicurist in me speaks up: 
I have been working with paraffin since 1987. First as a manicurist, then as a scleroderma patient. A full body bath in paraffin really does sound awesome, but I would like to offer an alternative for 2 reasons.

1. Patients with raynaud’s have a bigger risk for burns with paraffin. If one with raynaud’s were to place their hands in a paraffin bath that was even slightly too hot, it can cause tissue damage to the extremity, going from extremely cold to hot. And because of impaired temperature sensation, a raynaud’s patient may not be able to detect the bath is too hot. Thermometors can fail.

2. Open sores. One must never use paraffin if there are any wounds because of risk of infection.

Tips for using a parrafin bath for patients with Raynaud’s:

1. Place hand in plastic paraffin bag, then dip bag into paraffin.

2. Scoop hot wax with hand using the bag as a barrier between hand, then turn bag inside out when removing from paraffin wax. (This will take practice. Don’t be discouraged by a little mess)

3. Now, you have a bag of wax and you can feel how hot the wax is through the plastic. Use your forearm or wrist to touch the outside of the bag to feel how hot the wax inside the bag is. If it is too hot for your forearm it is too hot for your hands, feet or whatever it is you are placing in the wax.

4. Once the wax feel cool enough to tolerate COMFORTABLY, place your hand inside the bag.

Never, EVER use paraffin wax when you have an open wound or pressure sore.  Yes, even a paper cut.  Don’t make me show you pictures of infected wounds- it’s nasty!

For more information:

Medscape detailed article: Musculoskeletal rehabilitation in the person with scleroderma.

Pub Med Abstract: Musculoskeletal rehabilitation in the person with scleroderma

Raynaud’s Risks and Prevention

The Scleroderma Society

Tips for Living with Scleroderma, by Scleroderma Research Foundation

To help fund research for scleroderma, visit: Bounce to a Cure

FAQ for Raynaud’s by The Raynaud’s Association

Handy Hints for Raynaud’s by Raynaud’s & Scleroderma Association, UK

Visit The Mighty Turtle on Facebook for more scleroderma organizations.

 

Scleroderma, Sarcoidosis and Skin Care?

All my travel, education and maintenance for The Mighty Turtle, is covered by me.  I seek no sponsors, because when someone writes a check, there is an obligation of loyalty for their support.  That’s something I put upon myself, but hey, I like sleeping at night.

Here’s why I don’t seek sponsors:  I am free to say what I want.  I can support, or not support any non-profit I wish based on my perspective as a patient.  I can make jokes that are more adult than PG-13.  I did consider becoming a non-profit, but I want all tax deductible donations to go to research and eduction by existing non-profits doing outstanding work.  I just do not see a point in the wasted expense of  corporate fees for my silly blog.  The thing is, I’m not just a blog.  I volunteer my time and I attend education events.  These things cost money.  I am “lucky” enough to have disability benefits from the Veteran’s Administration and access to world class healthcare, but I’d like to attend fundraiser to show those who contribute that people can lead productive lives once symptoms are under control.  I am in a remission-esque state.  My prognosis is good and I’m feeling good.

I have had a lot of kindness bestowed upon me by people I have never met in person, who send well wishes, prayers and thoughts.  I have also met many who do not have access to health care.  Good people fighting for disability benefits, and vilified by the media and neighbors for seeking help while fighting for their lives.  And once they get help, they are “awarded” a pittance that is gobbled up by medication copays, food and rent.  And while they live on these benefits, they endue ridicule from people who think they don’t deserve it.  It’s not that there is a majority of douce nozzles who vilify the sick, poor and elderly.  There certainly is an abundance of douche nozzles, but it has been my experience that they are the minority.  Douche nozzles just yell the loudest, so they are the ones being heard.  I want to change that.

The thing about being an activist is, in order to go places and do things, I require money to get to events.  Some activists are lucky to be self sufficient.  Some work a full time job and do activism in their off time.  Some have benefactors or sponsors to help their work.  My problem was, I needed funds to go places and do things to further my mission, but I did not feel comfortable asking for donations or working for a non-profit. I am also in no condition to hold down a full time job.  If I need to rest, I need to be able to rest and recover. Now, I have a solution.

Yesterday, I became a Brand Ambassador or sales rep for Votre Vu.  Everyone has skin, it’s a product line I can stand behind and feel comfortable recommending to others.   I get to use my unique set of skills as a manicurist and beauty school drop out.  Sure, yoga pants and novelty t-shirts are a staple in my closet, but I know skin care.  Working as a Brand Ambassador for Votre Vu will help with expenses to get out, and show the world that high quality health care and the right treatment; not most cost effective treatment, saves lives.

So, in order to get my business going, I have started a Facebook page and Twitter.  This way, I can raise awareness without a bunch of “words from my sponsor” mixing my business with my activism. Yes, they will mingle like chocolate and peanut butter at times, but I will do my best not to make it a regular thing.  

Today,  I am writing about it to grow my business- of course, but I want to make clear my mission: Raising awareness and assisting non-profits without compensation.  I don’t want to be compensated by non-profits because it allows me to work with any non-profit I wish.  I play nice in “The Sandbox” with everyone who is working for cures and making information freely available.  I have the freedom of not competing for funds.  Non-profits have to work to get research and education funds from donors.  I want to help.

So, I’ve taken this post and rambled about my plans.  Thanks for reading.  Please “like” and “follow” where applicable.  And if you have an occasion for a gift or would like to try some great skin care, please keep my Votre Vu store in mind.

Now, back to our regularly scheduled program…