And Now, A Pep Talk.

This was taken from a post I wrote and shared elsewhere, then edited into this blog post.  For those of you who don't have scleroderma, feel free to replace the word "scleroderma" with your chronic illness.  We have different diagnoses, but we have so much in common.  Don't let a disease name deter you from an honest pep talk riddled with salty language.  

Greetings Fellow Patients!  

I want you to know how strong you are.  I don't need to tell you all that you are in a fight for your lives.  I write this blog to share what works for me and after reading some statuses, I think some of us could use a good pep talk.   I'm about to speak to you in a manner that keeps me going at times.  I'd ask you to forgive the salty language if it offends you, but sometimes a little  foul language mixed with humor, and blunt honesty, is exactly what we need to hear. Those of you who have experienced boot camp can relate.  (By the way, can you believe people actually pay to participate in boot camp fitness?)  

Cancer Sucks
First, I am so tired of patients complaining about how "cancer gets all the publicity".  No big-name celebrity has scleroderma. A big dose of viagra and lesbian porn couldn't help get a rise with the name scleroderma, it's so unsexy.

When patients drop dead, scleroderma is mentioned in the obituary. Those who the deceased invited to walks and fundraisers for years come out of the woodwork to cry at their funeral, and walk in their memory.  Everyone has a bonding, cathartic moment.  Promises are made to do it the next year in the memory of the deceased, but guess what? Life goes on, which is exactly what the deceased probably wanted.  The deceased needed that love, support and a cure while they were here.   I know, it's a pretty brutal reality, but that's the way it goes.  It doesn't make those loved ones bad people.  We all don't know what we really have until it's lost.

There are not enough months in the year, or colors in the rainbow for the diseases that need curing, treatment and funding for research.
Fundraising is not our fight. Our fight is for our lives. F*ck awareness already.  We are acutely aware of scleroderma and so is our family.  If you want to be aware of my little heard of disease, read about it. If your "friends" seem to act only because they were prompted by a Facebook status meme to get all worked up over a cause, offer to assist them in removing their head from their ass and send an email about your messed up disease they cannot spell or pronounce.  We can't control their response.  If they do nothing, maybe it's to much for them,  so use your energy for something else.  Getting angry because people post all kinds of cancer stuff on Facebook and ignore scleroderma is a waste of good energy scleroderma patients need for the fight.

I've been writing about scleroderma and raising "awareness" since 1994.  Friends and family who don't share my every post, surprise me every now with how they have taken time to learn about my scleroderma and sarcoidosis.  They strike up a conversation that's helpful and supportive outside of Facebook. True friends don't need to share their empathy and support for you.  It's one thing to share something about a patient not close to us, but it's a different ballgame when it's your sister, or best friend.  So give your friends a break.  Or don't.  Just redirect your energy to the fight instead.  Are you patients picking up what I'm putting down?  People care about us and it can be so painful for them they don't know how to express it. And if they think you are faking it or it's "all in your head", unfriend them or make them an acquaintance and move on.


Scleroderma is a big part of our lives, but it doesn't own us. Our fate is not in god's hands until we are dead. We, are not dead. We may be in a great deal of pain, near death, or about to have a close brush with it. Those are facts. It is up to us as patients to be our own best advocate, because this is an orphan disease. Yell where it counts and kick down doors to get what you need. No one is going to do this for us. It sucks- I know. Suck it up and fight. Take breaks when you need them, depend on pain pills because they will help you manage pain. If the pills cause side effects, take the meds to help fight the side effects if it means you get to keep your fingers.  Ulcers do heal! Viagra gives me a headache, so I drink coffee in the morning.  Ask your doctor, (make sure it's one who keeps up with current research) what temporary  things you can to to get those ulcers to heal, or hang in their with that medication that causes side effects that seem unbearable, but preferable to death or gangrene.

We get crazy advice.
Well intended, crazy advice.  For example: "Try  Cayenne  for your Raynaud's Karen."  Cayenne pepper might help circulation, but my epiglottis doesn't close and I can't feel stomach acid from the heartburn cayenne pepper causes because my esophagus is scar tissue.  There is no peristaltic movement in my esophagus, hence making "hot dog down a hallway" an actual medical term.   So remember good buddies, advice comes from a place of caring, but anyone who tells you that you can beat scleroderma with a vegan diet, or herbs is a fucking idiot. Smile at them, thank them for caring and move on. Do your research. See what foods harm or help you.  There is no magic bullet.  If your doctor doesn't know what to do, find one that does and if you can't change doctors, educate the doctor you have. If they don't listen, be persistent.  Eventually, they will have to listen, to get you to shut up.  Be the squeaky wheel.

Friends who feel better because we have it "worse" than they do.  
I hate that.  I hate hearing someone sharing what's troubling them, then feeling a need to say to me, "I don't know why I'm complaining, you have it so much worse."  Unless I am engulfed in flames while someone is sharing their woes with me, I don't have it worse or better than anyone, and neither do you fellow patients.  We are all stronger than we can imagine.  When "shit gets real" we all step up.

F*ck Cancer, F*ck Scleroderma, F*ck Sarcoidosis, F*ck "Name Here"
Scleroderma is not the only fucked up orphan disease that does not get enough publicity. No disease is worse than another. They all suck. If you get an ulcer, don't wait for your god damn fingers to fall off; learn woundcare, debreeding and what drugs you can use to get blood to save as much of that body part as possible.

Be your own hero!  

Just because there is a "worst case", that doesn't mean it's going to happen to you.  FIGHT!

My hands look like shit because Viagra wasn't available to me until 2005.   I battled depression and it nearly killed me.  But you know what I am able to do now? Lots and lots of stuff. Sure I can't play guitar anymore, but I can sing like Robert plant playing the video game rockstar with my son.

Do what you can, grieve what you have lost and move on! You can do this! Stand up to those ulcers and brushes with death. I was not expected to see 30. I'm 43 now. And I've got many years ahead of me. Parts of it will suck. But I won't stop fighting to be here and keep what I've got. And it drives me to get out of bed every day, even when I feel like I've been beaten by a baseball bat in my sleep.

Need more inspiration?  Click here and ROAR.

A Look At Recommended Steps to Take After Diagnosis

Posted July 10, 2013, edited September 3, 2013

I recently  I read an article by Agency for Healthcare Research and Quality.  They presented 5 steps to take after diagnosis.  As a patient with scleroderma for 20 years, and diagnosed with sarcoidosis after years of symptoms, these steps sound very nice, but were unrealistic, at least in my case.  Don't get me wrong, these are great ideas in a perfect world, but the world of healthcare in the United States is far from perfect.  So, I'm going to comment on each step.  Please Note:  This is entirely opinion based on my experience.  If you find my comments useful to keep going, and not be deterred, awesome.  If you would like to tell me to go to hell, awesome.  Let me have it in the comments section.  We only have to agree that scleroderma and sarcoidosis need to be cured.

Read the this aloud to yourself as a reminder.

If you have healthcare and never denied a test or medication, this is the perfect plan.  The following steps are verbatim from The Agency for Healthcare Research and Quality.  My comments are in italics.  

Step 1: Take the time you need. Do not rush important decisions about your health. In most cases, you will have time to carefully examine your options and decide what is best for you.

- In 1994, there were very few treatment options for scleroderma.  I was given a leaflet, a nifedipine prescription and sent on my way.  My choice was to quit nursing school based on no information, move back to California from Wisconsin and get lots of rest, or stick with nursing school with no idea what to expect.  It took me two years to get diagnosed with scleroderma.   Luckily, I was in the Navy for one year and half of that time.  I did not miss a paycheck because I needed to stay home sick or go to a doctor.  How would that work for someone else?  I was in the military and guaranteed a paycheck.  What about someone who lost their job because they called in sick so many times while trying to get diagnosed with weird symptoms like blue hands, swelling and nerve pain?

Sure, my diagnosis was 20 years ago, a lot has changed because of research, but people in remote areas are having trouble getting the right diagnosis and care.  Just do a google search of scleroderma blogs, and you will read how patients are trying to get a diagnosis or care, or getting denied disability benefits because they do not have the proper diagnosis yet, because their doctor is unfamiliar with scleroderma.  You would be surprised what little information people making decisions or giving advice have about scleroderma.  

In a recent conversation with a representative of Social Security researching adaptations for patients with scleroderma, she asked, "Why would someone with scleroderma need adaptations?  It's a skin condition."  I explained to her that scleroderma was not, "Just a skin condition."  She was very receptive to the information I provided her, but she is one of many who are trained to speak with people in need of life saving benefits and she thought Scleroderma was a skin condition.  We have lots of work to do! 

Step 2: Get the support you need. Look for support from family and friends, people who are going through the same thing you are, and those who have "been there." They can help you cope with your situation and make informed decisions.          

Lovely.  In a perfect word where family and friends understand that a chronic illness cannot be seen, this is a great idea.  The truth is, many patients suffer for years before diagnosis, because they feel crazy telling people they trust their symptoms and they are met with responses we have all seen in memes all over the internet.  Oh, where to begin!  Here are a few:

1.  You don't look sick.  Check out The Spoon Theory by Christine Miserandino. It's a great post about "Not looking sick"
2.  It's all in your head.
3.  You need to exercise more.
4.  Then, there is the gossip some experience:  She's a hypochondriac.
5.  Scleroderma sounds like a skin condition.  It's in the name, so it must not be serious.Okay, enough of that, you get my point.  First, we have to explain what scleroderma is to our family, while we try to grasp what it is, without panicking during every search on Google because people post wort-case to get attention for awareness.  I can't blame them for trying, but it leaves little hope to newly diagnosed patients.  More and more patients are surviving scleroderma, but only those who have access to the best healthcare and educated providers.  

Step 3: Talk with your doctor. Good communication with your doctor can help you feel more satisfied with the care you receive. Research shows it can even have a positive effect on things such as symptoms and pain. Getting a "second opinion" may help you feel more confident about your care.

Speaking of doctors... When I moved to Murrieta, doctors here had only heard of scleroderma.  They mistook my symptoms of sarcoidosis for scleroderma symptoms because they knew nothing about sarcoidosis or scleroderma.  First, a patient has to find a doctor willing to do more than give the diagnosis and "wait and see".  Make sure you are seeing the right specialist, a rheumatologist.  Not to mention getting baseline tests of lungs, heart and upper GI.  Now, if you are newly diagnosed, have a full time job and have "Golden Insurance", this is not a problem.  I have a request: If you have an experience to share, share it in comments to encourage other patients not to give up.  This is a journey riddled with roadblocks by people paid to keep cost down.  We have to become our own best advocate.  And by we, I mean you who are reading it who are frustrated.  I have to drive 2 hours one way to get the proper treatment for my hands.  It sucks, but it is what it is.  I bring my dog and stop at the beach after.  I do it because since 1999, OTs at two nearby Veteran's Hospitals would not work on my hands.  I was told I was a lost cause.  Since stopping the OT I received through the Wisconsin Veteran's Healthcare System, my hands have since atrophied and now we are working to get some range back.  

Step 4: Seek out information. When learning about your health problem and its treatment, look for information that is based on a careful review of the latest scientific findings published in medical journals.

Visit at a hospital, or medical school library and ask the librarian for help.  Medical journals often post only abstracts of a study online, which is a short blurb about findings.  Google it without experience and it's the perfect way to diagnose yourself into thinking you are dying.  Before you research, ask your doctor for the proper keywords and journal names.  I don't want to deter you, I want to encourage you to find research foundations that research your specific condition.  For Scleroderma in the United States, I recommend The Scleroderma Research Foundation.   Their funds go directly to research and education.  They have one office.  As far as fundraising goes, they are nationwide.  The Scleroderma Foundation is a great place to go for support groups, education and research as well.  They have chapters all over the United States with many offices around the country.    Many are all volunteer, some have paid staff amd some are simply support groups.  They provide great services, and funds are raised for each region.  

Watch your back, Jack.  There are some online patient communities that offer counseling services without licensed counselors or ask you to donate to participate.  I am sure they do some good, but they claim to offer counseling services by unlicensed counselors.  I once worked with a former mentor (emphasis on the word former) placed plants in her closed groups in the early days.  And I have noticed there is a bot that initiates contact with people who tweet certain diseases, on behalf of my former mentor's newly formed foundation.  But, don't take my word for it- or anyone else's for that matter.    If you find yourself in a group and it doesn't feel right, go with your instincts.    If you see a group going after an individual or shuns members, that is a huge red flag. 

Step 5: Decide on a treatment plan. Work with your doctor to decide on a treatment plan that best meets your needs.

Great idea.  A treatment plan is an awesome idea!   Now the trick is to find a doctor who knows more than a thing or two about scleroderma, or your condition in your area.  You may have to travel, but it is worth it.  This is a chronic illness and your life depends on how well your care is managed.  I know scleroderma, so I will refer the two organizations I trust to help patients without requiring a donation or membership.  These organizations count on donations from people other than patients. If you pick up the phone and call these foundations, they will give you information over the phone for free.  
1.  The Scleroderma Research Foundation Contact Info and Downloads for newly  & not so newly diagnosed patients
2.  The Scleroderma Foundation  Contact info and Downloads for newly & not so newly diagnosed patients.   

Patient Communities:
Very helpful.  I recommend the following:
1.  Treatment Diaries   Outstanding community founded by cancer survivor, Amy Ohm.  They will not ask you for money to join, and it's a great way to connect with fellow patients.
2.  Inspire:  Another great online patient community that will not ask you for money to join.  

My comments about those 5 steps are based on my 20 years with scleroderma.  Many autoimmune diseases have similar symptoms to fibromyalgia, lupus, rheumatoid arthritis and drugs used to suppress the immune system for cancer treatment, like methotrexate are often used in the early stages of scleroderma.

I would like to add that If you are newly diagnosed or seeking better care because what you are doing, don't be afraid to look at how people with other diagnoses are coping.  We share the same experiences like loss, grief, anger depression and so much more.  My diagnosis of sarcoidosis was accidental.  I went to 4 different ER's before UCLA took my trouble breathing seriously and and did the tests  that lead to a lung and lymph node biopsy that provided the sarcoidosis diagnosis.  Until I was given Remicade because of the sarcoidosis, my symptoms were progressing of both the scleroderma & sarcoidosis.  I had to fight for the recommended Remicade and bypass 3 other medications that needed to try and fail before using remicade because of cost.  Since 2007 and receiving Remicade with Methotrexate, the pulmonary fibrosis in my lungs has stopped progressing.  Fighting for care sucks, but it's exactly what we have to do to get what we need when someone says "no" due to cost.  If you take anything away from this post, I urge you to keep fighting.  It's hard.   I;m not going to lie, there were times I wished for death. I would tell myself, "I wish this was over."  Until I realized my scleroderma was not going away and over, meant death.  I made it through the worst of it.  I think it is luck I am not dead because many die from scleroderma every day.  I'm here because it was not my time.  I continue to heal and become stronger because I am my own best advocate.  There are times I put my foot in my mouth and make mistakes.

If you skipped to the end:

Advocating for yourself is on the job training, even with help.  And there is no shortage of people looking for minions for financial gain or to fulfill some messianic fantasy.  So, watch your back, Jack.  Rest between battles, because you won't win every single one.  Somedays, your only goal needs to be to live to fight another day.  Most important, the best possible outcome may not be what you want.  It may take compromises, like giving up certain foods and activities and worst of all (at least for me) asking for help.  If you have to give things up because you can no longer do them, take time to grieve, but try not to let it consume you and it times, it might but you can crawl out of the jaws of what's consuming you.   There are no guarantees in life, but there is hope if you look for it.    Keep looking for hope.  We all have limited time here, cherish what you get.  I never said this would be easy.  I still struggle at times, I take antidepressants, I see a psychiatrist to manage my meds for anxiety and have a checklist of depression red flags for me.   Exercise and writing are my outlets.  My happy place is time with my son.  My dogs get me out of bed every morning.  Find your tools, then fight.

Jedi Wound Care

Jedi Wound Care

Last night, there was a "scab" on my middle finger  MCP.  The skin around it was swollen and red.  It was hot to the touch.  I decided to use  non-stick gauze cover it and applied antibiotic ointment.

I've Been Slimed!

Two house later, I took a peak and there was - for lack of a better term, green slime.  I removed the dressing and prepared myself for a relaxing soak.

De-Sliming Protocol Engaged

I filled  bowl with warm water and hydrogen peroxide.  I soaked for about ten minutes.  The slime was drawn out by the warm water and the peroxide cleaned the tissue.  Note: Never soak in straight peroxide.  Always mix with water.  Ask your doctor or a wound care health practitioner at your next doctor's appointment for advice about soaking.  It's not that anyone is withholding secrets: Appointments have time limits.  Put this question on your list.

I soaked my hand for almost 10 minutes.  I took it out of the water frequently because I was curious and impatient.  That's how I made the time pass quickly.    When my hand was immersed in the water/peroxide solution, I could see the "slime" float away from the wound like wafting cigarette smoke.

When finished with my soak, I rinsed with sterile saline solution.  (Warm water will do if no saline)  I gently dabbed away remaining slime that was now yellowish-white, and allowed it to dry for about 45 minutes.

That's A Wrap People

It's not always possible, but after soaking if you can let the wound dry out before covering, skin is less likely to break down.  Don't sweat it if you need to cover it and go.  Just use non-stick gauze with no ointment to let the gauze absorb moisture.  Bring some ointment and supplies for a clean dressing change with ointment later.

Once the wound is dry, apply ointment to gauze straight from tube.  By applying to gauze, you are not compromising the ointment by applying directly to tissue, and you won't need to use a cotton swab.  A cotton swab to the wound may not sound "traumatic" but it has been my experience, the less I touch the wound, the better.

So, a dollop of ointment to the gauze, then apply tape to back of gauze and smooth tape gauze side down over wound.  If you have Colban (stretch it- you dont want it to be constricting.) or a thin way to wrap the wound, great.  I have uses a thin ankle sock with holes cut for fingers and thumb when I don't have something.   I roam around the house in tape & gauze, but when active, I wrap it for extra protection.

The Law of Attraction

I don't know about you, but when I have a healing wound, if I'm going to bump into something, I will bump it with my wound.  Yep.  I have tried to be more aware and cautious, but that only seems to make it more likely to bump or bang it into something.  I call it The Danger Prone DaphneEffect.  So, rather than fight it, I wrap it.  So, yeah, the sock is not crazy.  Ya gotta do what ya gotta do!

And now, some before and after pictures.  Try not to be eating.  If you have question's please post them in comments.  If I don't know the answer, I will find one or send you to a source that could.  

See the hole? That is surrounded by tissue that was once swollen, then drained by soaking. Notice the redness around the tissue surrounding the hole. Never, ever puncture a wound. Soak it and let it drain. The implement used to "break" it will introduce bacteria that can make it worse. This picture was taken last night. The anatomical location is my middle finger knuckle attached to my hand or MCP. Still wondering, go to link provided for hand anatomy.

This morning: The tissue is not as yellow as it appears. I left these photos unedited because it did not help. The redness present last night around the swollen tissue is gone. The area is sore, but only if I press on it, not to the touch. It is also no longer "warm". When I removed the dressing this morning, the tissue was wet and beginning to break down, so I have left it to air dry this morning to allow my skin to regain some integrity before showering. After I shower I will let this air dry for an hour before rewrapping and setting out for my active day.

Hand Anatomy 

For more information about Scleroderma and related conditions, please visit:

Scleroderma Research Foundation

Scleroderma Foundation

Scleroderma Care Foundation

FESCA

The Raynaud's Association

Pulmonary Hypertension Association

Pulmonary Fibrosis Foundation

And a word from our sponsor: Me

Votre Vu

Yes, It Looks Scary, but it Will Grow Back...

I've had a wound /ulcer /hole in my knuckle for a few weeks now.  I had an upswing and it looked like it was going to close, but there is still some icky drainage going on, so I made an appointment to see my doctor to have it looked at today.

I have to say, the hole was huge two  days ago, and now the hole is smaller surrounded by healthy tissue regrowing nicely.    Inside the hole it's just gross, but very clean and rarely oozing.  With all the experience I do have as a wound care Jedi, I am not a doctor, or in other words:  I still need to go before the Jedi Counsel.

For those of you experiencing ulcers from impact, calcinosis or Raynaud's, I'll post pictures of the wound progression in Pinterest.  These wounds can be scary and insanely painful- I don't have to tell you that.  I want to post them so you know that you are not alone.  When I got these back in 1996, not only could I not find anyone else who knew how to take are of them, I knew of no one else who had experienced the weirdness that is slow healing and puss as something that occurs normally.  Not that these wounds are normal.  I do have a choice to avoid them.  I live alone and I don;t like asking for help and I love to get  out and do things. I am willing to risk infection and pain caused by a an impact injury, than sit still.  Playing with my son and having adventures that risk my bumping my hands into something or by unpacking myself and having my home the way I want, outweighs the setback of wound care.  I have accepted it as a very painful inconvenience.  I get a sore, take care of it and roll with it as it heals.  I can focus on how much it sucks, or I can tale care of the wound and focus on life around me.  It took years for me to get here.

A few of my favorite things... and I don't feel so bad...

If you are new to these ulcers, learn to take care of them.  Ask for a referral to a wound care specialist. If you are ever in a hospital, ask your nurses to see if they can score you some Medicpore tape,  Colband and cause.  Yes, stockpile and squirrel away.  Never  turn down free wound care supplies when you can get them.  Saline solution is outstanding for  rinsing wounds.  Saline filled syringes can be reused to help rinse.  In another post I will unpack my first aid kit, but for now you will have to live with a tease of a picture, but I need to get going.  I am to go before the Jedi Counsel for guidance.

Have a great day everyone!

PS:  instead of being shocked over breakfast by my waving my wounds n your face, you can to Pinterest and click to see them.   They will be up Saturday, but connect with me on Pinterest if you happen to be there.

The bandages always make it look bigger than it really is.  This is quite comfy.  

Raynaud's: What works for me.

April 26, 2011

Exercise. It’s good for all blood vessels. Yoga and breathing exercises help me cope with pain. Stress is a HUGE trigger for Raynaud's for me. Yoga has helped me cope. I started with Kundalini Yoga in 2005. I just started studying Anusara yoga one on one with a yogi at Yoga Living Studio here in Temecula. It's helping a great deal. Remember, exercise is always a good idea.

Eating well is also a good idea, but beware of anyone who tries to sell you herbs specifically for symptom or diseases. For example, cayenne pepper is excellent for circulation, but if you have any type of Reflux, it will damage your esophagus. I mention the alternative medicine because if you seek out a yogi or yoga instructor focus on the exercise. Chanting and movement doesn't cause exacerbation of symptoms.

In 1994, My Raynaud's was very aggressive. I was in college, had to change my major, break up with my boyfriend who I moved to Wisconsin with from California. Some of us have stressors we're not even aware of. I was in denial, which was the stressor I ignored and found some poor ways of dealing with it.

Raynaud's is a response by the sympathetic nervous system- fight or flight. It is an unconscious reaction to a threat. Now that we're no longer hunter/gatherers threatened by predators our stress has changed, but the fight or flight response is still present. How will we feed ourselves? Take care of our offspring? Deal with our environment? (i.e. cold) Take care of ourselves?

As someone who experienced Raynaud’s at a young age, I would suggest to anyone with Raynaud's to find ways to cope with stress such as yoga, meditation & exercise. Don't hunt for stressors if you don't know what they are. That just creates more stress. Focus on the coping so that you are prepared for whatever life hands you. Something as simple as a manicure or pedicure once a week is a stress reliever. A massage once a month is great. My biggest regret is not doing yoga in my 20's. I discovered it in my 30's. Find a studio near you. Keep working with your doctors. I have some posts about what happened to me on my blog. I don't want to scare anyone so if you read them, please keep in mind this was almost 20 yrs ago, before Viagra and no one believed me when I reported my onset of symptom. Back then my doctors wrote it off as "hysterical female syndrome".

Here is the website to the Yoga Studio I go to called Living Yoga Andrea; the owner is also an excellent source of information as well. You may be able to find a place similar to it in your area if Temecual is too far.

One more thing:
My mom used to massage my hands gently, when she could and when I lived with her. Just throwing that out there. If I was sitting around watching TV, I'd take a wet towel, put it in the microwave until warm, coat my hands with lotion (I now use Kama Sutra Almond oil- works better than anything I've tried and smells great) cover my lotioned or oiled hands with towel and relax while watching TV or hanging out. Then after the towel cooled, my mom would gently massage my fingers, great for my circulation and my mind. A partner, roomate or a good friend also make great massage buddies. It's one way friends and family can help when they feel helpless.

Our 20 Year Anniversary. Yes, Me and Raynaud's: Here's some Ideas From an Old Couple.

Yes, it’s been 20 with Raynaud's. Here's a timeline list.

1992. My doctors didn't believe me.

1993. My Doctors were not sure what the hell it was.

1994. Congratulations! It's Scleroderma! CREST is not just my favorite toothpaste anymore.

2008. Viva Viagra!

2012. Happy 20th with Raynaud's! (Do I register at Macy's or REI for TEVA sandals?)

One good thing that I have from my 20 relationship with Raynaud's is a wealth of information of what not to do. Even better, things that have helped that I can share with others. REMEMBER: These are things that work for me. Check with your doctor. Nothing is ever one size fits all.

1. It doesn't matter what climate you live in, just take precautions and be plan to be cold all the time. It's a real timesaver.

2. Tune out people who tell you just because they aren't cold it means you are just "oversensitive", because they are uninformed and believe they are helpful.  Remember THEY believe they are helping you.  I know it's difficult, but I have to tell you receiving stupid advise from well meaning people becomes easier with time.  The sooner you let it roll off of you, the better you will feel.

3. Except when sleeping, I always wear 3 shirts to keep my core temperature even. For example: a short sleeve shirt always has a tank top or something like it underneath. Then I either wear or bring a light sweater or jacket. My rule: undershirt, over shirt, jacket. It may be 100 degrees outside, but transitioning into an air-conditioned environment can trigger a Raynaud's attack. Bringing having  a third layer helps prevent an attack. I love wearing a thin cotton long sleeve shirt underneath a cute short sleeve. I can wear it with shorts or long pants. I also use a thin cotton long sleeve under casual sundresses with some converse or cute sneakers. It gives me an excuse to wear socks. I notice when my feet are covered in comfy socks, my core temperature stays consistent.

5. If I have a Raynaud's attack and have no other options, a quick way to warm my hands is to (icky warning) put my hands under my armpits (over clothing), or even better, someone else's (They are usually warmer)

6. When having a Raynaud's attack, warm water can help, but I tend to make it too hot which can cause further tissue damage, so be careful.

7. Massages are helpful for me .  Scleroderma is not a one-size-fits-all disease and always ask your doctor f massage is right for you .  Massages can be expensive.  I have found Massage Envy very affordable and their therapists are well trained. Never be afraid to ask about a therapist's experience. ALWAYS observe their cleanliness practices and don't be afraid to ask them about it. Let them know if you are on immunosuppressant drugs.

8. Weekly manicures and monthly pedicures are awesome. Never ever go to a "discount"  place, especially if it looks like an assembly line. You will get an infection in these places. Keep in mind, just because a salon may charge more doesn't always mean they are consistent with cleanliness practices either. Ask and observe. Some high end salons have memberships or work out deals with frequent patrons. Don't be afraid to ask, because everyone has to live on a budget these days. Always let your nail technician know about your circulation problem and if you are on immunosuppressant drugs. The massage helps quite a bit on my hands and feet,but before you even get a massage anywhere on your body ask your doctor first.  Oh and during a pedicure, If someone ever pulls out a razor and tries to "trim your calluses" with it, always say no and report them to consumer affairs. They are illegal to use in salons. A pumice stone or a file is the only thing needed to soften calluses in a salon.

9. Find a good podiatrist. They are great for keeping calluses under control and the only person that should ever use a razor to trim back calluses.  Your podiatrist can show you or a loved one how to do it at home.

10. Make sure your shoes are supportive and comfortable. I have no fat pads on the bottoms of my feet. I even have to wear shoes in the shower. If you notice pain when you walk, ask your doctor or podiatrist about custom made inserts. I haven't tried the Dr. Scholls in the drug store, but I bet that would be an affordable solution if not covered by insurance.

11. Occupational therapists can be helpful. Beware of being treated like a carpal tunnel patient. I had good insurance at one time (I now have Medicare and veteran's healthcare, which is even better.) and a private OT chain treated me like a cash cow. It wasn't the therapist, it was the business office. I learned a lot from my 1st OT in 1996 after my digital sympathectomy.  The right occupational therapist will teach you many useful exercises and prevention tips.

12. Digital sympathectomy. In 1996, Viagra was not available, so a digital sympathectomy seemed like a good idea at the time. There are so many vasodilators available these days, surgical sympathectomy are needed less. Today, I take Viagra 4xs a day, plus niphedepine once a day. These meds can cause headaches because of the rush of blood flow to the brain. I have some coffee in the morning to keep that under control. My doctor knows about it.

14. The very best thing that helps keep my Raynaud's in check is exercise. If you can squeeze in just 5 or 10 minutes of constant movement a day, you will notice a difference. I have. I tried to commit to doing yoga every day, but found it difficult to fit it into my schedule. Sometimes I just put on some music and dance for one or 2 songs and that movement help get blood to tips of my fingers and toes. I’m a terrible dancer, but my 7 year old son and I do a little boogie after he gets dressed in the morning before school. When my son's not here, my dogs will at least keep me company. They look at me like I'm crazy, but they can keep a secret. I have progressed from planning to exercise and never fallowing through to adding 5 minutes of it to my day. I have started going to the YMCA when they have things like kids cardio or kids zumba. My son has some fun while I walk on the treadmill.

15. If your feet get cold quickly and are sensitive to the surface of the bottom of the pool or wherever you swim, don't be afraid to wear some shoes. Aqua socks are useless to me because the bottoms of my feet are just bones with no cushion. TEVA makes a great sandal made to wear in and out of the water, and they look good too. It takes some getting used to swimming with them on, but the injury prevention is worth it. I love mine. I even use them in the hot tub.  (Good God!  James Brown's Celebrity Hot Tub Party)

16. Moisturize.  Fo me, Kama Sutra Oil is the only thing that keeps my the skin on my hands and from cracking. The skin on my fingers is scar tissue and  their Sweet Almond Oil seems the most effective for me.  It's not just for hot monkey love.

So those are my tips.  If you have any to add, please leave them in the comments section because my way is not the only way.  Living with Scleroderma isn't easy, but it can be done.  It takes a lot of patience, some sedatives and some good old fashioned stubbornness, but it can be done.  You may have Scleroderma, but Scleroderma does not have you.