I’m Not Here to Inspire You

The character Morpheus from The Matrix with a copation that reads, "What ifI told you that when you tell me you thought you were having a bad day, but then thought of me and realized my life is not so bad" Do you know that you are not helping?

Disability and illness are cruel, but having them does not make an individual special. This may not be a popular opinion, but it is mine. Since I have both disabilities and chronic illnesses, I will take the floor.

I have been called brave, a warrior, or described as “suffering”. I have had great difficulty helping people understand why these terms are used a little fast and loose for my taste.

I’m told often how courageous and brave people think I am. Really? I’m not brave because I live with an illness and disabilities. What’s the alternative? I’ve said it in prior posts that living with obstacles doesn’t make me brave; it just means I’m not dead. Being not dead is certainly a reason to celebrate, but it doesn’t make me brave. I’ve had conversations with people who say to me, “I was having a bad day, until I thought of you. I know that no matter how bad my day is, it couldn’t be as bad as yours. I have no reason to complain, your life sucks compared to mine. I mean really, I don’t know how you get out of bed every morning to face the day. I would probably kill myself if I were you.” (Every one of those statements have been said to me.)

Everyone should be able to have a bad day, and not feel guilty about it. On the surface, maybe “my life is not as bad as yours”, may sound like a compliment, or that your validating their struggle. No. That’s like saying, “My life is okay, but yours- it’s really bad. Oh my God, you have a terrible life. I am so happy not to be you. I feel so much better now, because my life could be so much worse!”

Having a disability or illness does not mean that my life sucks. Look, I would never say my illness is a gift. That’s stupid. But yes, my life is good. I am rare because I receive veterans disability benefits in addition to ordinary disability benefits. To be quite honest, I don’t know if I would have lived so long without it. Back before it was against the law to discriminate against pre-existing conditions, (and even now) patients who need specialized doctors outside their network of care will die prematurely because their budget doesn’t afford them the luxury to pay the out of pocket network co-pay, and/or non-formulary medication. The United State citizens fear terrorist attacks more than people dying from lack of needed specialized care and prevention. You know what’s frightening? The comparison of Americans who have died from terrorist attacks vs citizens dying due to lack of medical care. Citizens of our country think it’s okay to call people on disability lazy, and denying coverage because some a**hole commits fraud. And yes, there are things in place that prevent a disabled person from supplementing their income. Because if they do, and it gets over between $500-$800, they loose their benefits and suddenly it’s no longer supplemental. So when illnesses flare and they don’t have the resources to pay co-pays for specialists and medication. Suddenly, they’re worrying about rent and food. And don’t get me started on pain management. It has nothing to do with pain and everything to do with preventing addiction. We force people to wait months at a time to see pain specialists because doctors have restricted abilities to prescribe pain medication. Yes, addiction has to be in the equation somehow, but thanks to a generation of medical breakthroughs, but lack of access to treatment due to income made handing out pain medication like M&Ms a preferred treatment. I once paid $5.00 for a prescription for percocet and $50 for the antibiotic to cure the problem. If I had to choose between food for my kid or medication until payday, I’d hang in there with the Vicodin until payday. Now, the stigma of pain medication has become so bad, people will walk around in excruciating pain, than risk being labeled an addict. This is why people listen to Jenny McCarty and Food Babes of the world. They promise them health because in the past, treatment was not available.

We are so dumb as a species.

Wait, what were we talking about?

Using terms like brave, etc… People have asked me how I’m doing, and instead of embracing the exciting things I share with them, I will get, “Oh Karen, you are so brave. You don’t need to be brave for me. How do you really feel?”

I have been complimented on my strength to get out of bed and dress myself. I’ve been give credit for just showing up. People show up, every damn day.

I hate being called a scleroderma warrior. I am not at war with my body. I’m trying to make it strong and healthy. I want the organs of my body to work together so I can go out and do things. I think that makes me a negotiator, not a warrior. My body is not at war. My body is negotiating peace with factions who disagree with one another. It takes time, patience and work, but we all do it. As we age, we do things to prevent high blood pressure and diabetes. We stop eating fiend foods because our metabolism slows down. The things I do to stay healthy, are the same as anyone else. Sure, some the medications are different, but the intent is the same: We’re negotiating for more time on earth. We’re giving in to concessions like taking medication and avoiding chili dogs, to live longer. I don’t know about you guys, but I’m 45 and I am working to get at least another 50 years.

When people ask how I’m doing, I will tell them I feel good, and they won’t believe me. They’ll reply with statements like: ‘Oh you must really suffer”; “I know you’re suffering”. Are they listening? No.

I could say, “Today, I won the lottery, had sex with Chris Hemsworth and instead of breaking up, my boyfriend congratulated me.” And I bet I would still get, “Oh, you are so brave. I just don’t know how you do it.”

I have shared a video in this post of a TED Talk featuring Stella Young. She nails it. Please watch. She is far more entertaining than this post.

Why I’m Not Angry Cancer Gets More Attention Than Scleroderma

 

 

Of course I wish scleroderma got the awareness and funds cancer “enjoys”. I’m not angry and I’m going to tell you why.  I am also going to offer suggestions to help you educate health care providers and the general public by recognition and comparison.

Why is cancer so infuriating to patients with rare diseases?  Well, obviously, people have heard of cancer.  It occurs more in the general population.  I have seen many statuses and comments sharing frustration and anger about how many other diseases get more publicity and funding than #scleroderma research. Since 1994, I too have been frustrated about how everyone pays more attention to cancer. In 1999, I thought that I would rather have #cancer, because at least most doctors know what cancer is, and how to treat it. My frustration eventually turned into action.

I decided to learn more about cancer to see if there were similarities I could compare to scleroderma and share using both cancer and scleroderma as search words.  What I found and concluded, surprised me.

I made some interesting discoveries. Cancer research and patient care, have provided caregiver models, and education programs.  Some cancer drugs are used in lower doses to slow down the disease process in autoimmune diseases by immuno-suppression,  like methotrexate.

Cancer research has also brought us the infusion clinic.  Because I have infusions of a powerful immune suppressant drug every eight weeks to accompany my dose of methotrexate, as a non-cancer patient, I still benefited from cancer research and patient care.  More people get cancer, and many have difficulty when IV’s are needed.  Not only did I get the best nurses for difficult IV’s, I also received education from these nurses about how I could benefit from a power-port.

Okay, what were we taking about? 
Cancer research has helped lead the way in the care of chronically ill patients.  Yes,  scleroderma and other patients with other illnesses, have benefited from treatment and care of cancer patients.  But wait, cancer isn’t the only condition that helped improve patient care.  How about the care of individuals who are paralyzed by stroke or injury?  There’s some rehab crossover.  How about Diabetes?  Yep, the care of diabetes patients has benefited many a scleroderma patient when it comes to Raynaud’s in feet.  It makes it easier to get insurance to cover orthodontic inserts, because the diabetes is familiar and when a podiatrist says, “We see this in the feet of diabetics, and treat it the same.”  Of course there are many differences, but by pointing out similarities in a rare illness to one that’s familiar, it makes it easier for the person you are teaching to learn and recall.    General practitioners know that poor circulation causes infections and amputations of limbs.   If you are the scleroderma patient and a doctor recognizes a symptom from an illness they know, about that is the scleroderma patient’s opportunity to compare scleroderma (or insert illness here) the similarities to scleroderma.    That will help that doctor recall scleroderma from the Rolodex# in their brain.

Here is one way I use recognition:
My quick answer for decades to the question, “What is Scleroderma?”
My short answer, ” Scleroderma is an autoimmune disease in the same family  as Lupus & Rheumatoid Arthritis, except it affects connective tissue.  You know how there are different types of cancer, there are different types of autoimmune diseases.”

I know, it’s not all that short, but it’s as short as I can get.  Recognition of Lupus or RA helps.  If someone hasn’t heard of those, I add a blurb about diabetes.  I will say something like this:
“You’ve heard about diabetes, right?  Diabetes is also considered an autoimmune disease. “

Most people are surprised by that information.  They recognize diabetes, and now you’ve connected scleroderma to diabetes.  Just like throat cancer is different  

In other words, those who named cancer did well for marketing purposes.  No matter what kind of cancer one has, everyone knows about cancer.

So when you see all the pinking going on and awareness campaigns of cancer , or more well known causes year-round, do some research.  Find similarities between the progress in patient care and how they have benefited scleroderma patients, in small ways or tremendously.  When you do something like that, it also gives you a way to join the conversation about a more well-know disease and even help other causes by sharing their fundraising information.

Now you’re probably thinking, “Did Karen just say I should share information about more popular causes than my own?”  Yeah, I am and here’s why:  Research breakthroughs and progress in other illnesses, benefits research in other areas.   One example is Benalysta for Lupus.  Benlysta was approved by the FDA for the treatment of Lupus.  Oh wait, it was THE first medication FDA approved for treating Lupus.  As I write this, there is research being done to find out if Benlysta can be used to effectively treat scleroderma.  (See what I did there)

Another idea is a compare and contrast.  Remember my post about how a woman I spoke with at Social Security who thought scleroderma was a skin condition?   Well, find a skin condition, learn about it and understand the similarities and difference, so that you can have a better reply to the “skin condition” thing.

Anger from cancer getting more attention is definitely warranted, but based on my experience, acting in anger is not the best idea. I think as a community of scleroderma patients, if we can take the conversation outside the scleroderma community by relating experiences in common with patients of other illness, we can get the word out faster.  A rising tide lifts all boats.  Research progress helps the illness community over all.  We can go back and forth for days about how one is worse than the other, but all illnesses suck.   Awareness is useless if we don’t teach anything along with it.  And teaching does not include photographs for shock value, but that’s a whole other post.

Thanks for reading! -K

 

FOOT NOTES

**At the time, I lived in Murrieta California and Loma Linda was my Veterans Healthcare center.

** When pain or anxiety hit me, I am not shy about asking for them, in spite of the stigma of “depending one them”.  Pain medication lowers my anxiety, because it takes away or dulls it to make it tolerable.  High anxiety makes my pain worse as well.  I have often been relived of joint pain and swelling pain, with anxiety medication, because I have a diagnosis of major depression and anxiety.  Many patients can attest to stress making symptoms worse.  I ask for these things with the risk of stigma in the back of my mind.

*** Before I stopped my doctor, I assessed his surroundings and mannerisms, to determine he was not rushing to a crisis.  Also, if he was on his way to a crisis, he would not have stopped to speak with me.  When I am in pain, or during a crisis situation, I have an unusually clear head.  It came from two decades of experience.  It may sound rediculous that someone in so much pain, has such a cool head, but please keep in mind I have 20 years of advocating for myself.  I have driven hours for care while in excruciating pain.  And when I say I have driven hours, I mean I was driving the vehicle.  I have learned calming techniques to be able to speak on my behalf.  I will admit though, the longer the problem continues, the more the F bombs fly.

#If you don’t know what a Rolodex is, Google it you young whippersnapper.  And get off my lawn!

 

June is Scleroderma Awareness Month

 

a·ware·ness

əˈwernəs/

noun
  1. knowledge or perception of a situation or fact.
    “we need to raise public awareness of the issue”
    • concern about and well-informed interest in a particular situation or development.
      “a growing environmental awareness” – GOOGLE

There were 27 diseases that had an awareness month in May. There are 13 in June on the list, but there are at least three missing that I know about.  Truth is, there are not enough colors to represent the amount of diseases that need cures. In July, scleroderma patients will watch the T-shirt colors change like the leaves in autumn.

Every store I go to, asks if I would like to make a donation to whatever cause they are fundraising.  Their causes are no less valid, but like many, I decline donating with a guilty tone in my voice.

People will say things to me like, “I could never be as strong as you are.”, about how I deal with obstacles they can only imagine.  We all have obstacles to overcome.  They are as different as night and day, but they are obstacles.  Of course people are as strong as I am.  Maybe they have not yet been tested, or maybe their coping skills are much different, but there is no “better”.

It has been said to me that, “at least you don’t have cancer.”  Maybe.  Maybe not.  There are treatments for cancer that are already mainstream.  There are an increasing number of options for Scleroderma treatment, but like many illnesses, things are tried based on how they work with other illnesses.  For example:  Most scleroderma treatment suppresses the immune system, to slow down progression, called immunosuppression.  The medications used for immunosuppression are also used in treatment of cancer and organ transplant recipients.

You and I are both aware of scleroderma.  It’s not enough to wear teal and do a fundraiser, but it helps.  Non-profit organizations that conduct research compete with other non-profits.  Not out right, but think about it; they are competing.  People donate money to a campaign they care about.  If it’s not someone they love, those organizations have to advertise to get donations.  It’s not good or bad, it just is.  I am more likely to donate to scleroderma research than cancer.  I am also more likely to donate to The March of Dimes, because their work directly effected the outcome of my pregnancy and saved the life of my son and I.  Just like everyone else, I donate to causes that matter to me.  Yet I can still become absolutely furious in October because the world turns pink.  The money used for merchandise could be put towards research and assistant programs.  But without merchandise, people won’t donate.  We like to feel good about doing something, and nothing seems to make us feel better than wearing something that tells the world we did something.  I do it.  You do it.  It’s very American.

Now, after 21 years since my initial diagnosis, and 25 years after onset of symptoms, I’m still here. My hands have contracted, I’ve lost range of motion in parts of my body and my lungs are scarred. I’m still here, and functioning very well. As irritated as I get about merchandise, I would not be here.  That merchandise has funded research that has saved my life and will save the lives of many more. I am taking medications now, that had I been diagnosed today, would have saved my hands, or at least the tissue that was destroyed by severe raynaud’s phenomenon.  I hate awareness, but without it, I’d be dead.  Awareness inspires action.  Please do something this month to teach others about scleroderma.  Thank you. -K

 

 

 

The Best Description of Living with A Chronic Illness You Will Ever Read. Ever.

Okay, maybe not ever.  But how about the best description of living with a chronic illness that you will read for the next fifteen minutes?  

Are you healthy?  Have you ever wondered what it is like living with a chronic illness like scleroderma?  Watch the movie Ground Hog Day.

It’s no secret I believe Harold Ramis was brilliant, But I never really knew how brilliant, until I watched Ground Hog with my ten year old son.  Bill Murray’s character, Phil was having his worst day ever, over and over.  Things eventually got better for Phil, but not until he figured  out how to be happy, no matter what his circumstances.  (Yeah, I know it’s an old movie and you probably got this message back in the 1990’s, but this is still new to me.  So please humor me and read on.)

I can’t speak for everyone with a chronic illness, just me, and for me, it has been Ground Hog Day since 1994.  Every day, I wake up feeling okay, then I try to use my hands, or I get another weird diagnosis, or I am forced to train another doctor. Providing me plenty of food to nurture that garden of resentment and anger I tend  in my heart.

Let’s be honest, I’m a bitch.
Like Phil, I do not want to make friends with people who I do not wish to relate to, like other patients with scleroderma.  There, I said it.  I don’t want to get together with other patients who have scleroderma simply because we have scleroderma.  I would love to get together with other patients who have scleroderma and go to a movie, hiking or a root canal.  Anything but talking about living with scleroderma.    And yet here I am writing about how I hate talking about scleroderma while I’m talking about having scleroderma.  You see, it’s not really about the other people in my life.  I just don’t like being in this situation.

Like Phil, I had to stop and be present in my environment, find something I enjoy and then do it.  My problem was that I hated my environment so much, I wouldn’t stick around.  Have you noticed I have been moving every single year since 2009?  My family has, and I just got the memo.  I’m running from something.  But this year, I decided to stop running.  hen I watched Ground Hog Day for the 5oth time and related.  I still haven’t figured it all out yet.  But I have figured out I too could be that “nice young man from the motor club.”  I’m just not there yet.  And that’s cool too.  Or maybe I am there and I don’t know it.

I can fight situations all we want.  But then the time comes when I  need to stop driving angry, and today will be tomorrow.  Confused?  Me too.  So, why not  curl up on the couch and watch a classic Harold Ramis movie.  it makes everything better.  Have some popcorn, and don’t be stingy with the butter.

 

Vanity and Denial Are My Great Motivators

It’s not my strength in spirit, or desire to help others that has kept me alive far longer than many expected.  I  am stubborn and  I refuse to accept my limitations because I have no patience for assistive  devices that move like molasses.  Yes, I do realize how childish that sounds after typing it, but I’m okay with it.  When I had to stay off of my foot for forty-five days, I used  scooter at Target.  I picked up everything in that stupid front basket and limped to the cash register, and I still moved faster than that scooter.

People tell me all the time how strong they think I am.  They go on about how I continue to live life bravely.  I’m not strong.  I’m not brave. I am deep in denial, and  I want to look good.  Does that make me a shallow person?  Look deep into my eyes.  Aren’t they gorgeous?    

Sure, it used to bother me that I can’t wear the four inch heals everyone else gets to wear, then I discovered shorts with Ugg Boots.  I know, it sounds weird.  And the shorts aren’t even that short. But it’s a great way to keep my body temperature under control, which is important if you have Raynaud’s.  And it doesn’t hurt that  Ugg Boots look good on me.  

The love I feel for my son and the thought of dying too young if scleroderma hardens my body sure is sad, but that’s not motivating enough to get me to exercise.  But do you know what is?  It is the remote possibility my son might have to see me ride a Rascal Scooter in Target, with an oxygen tank wearing velcro shoes.  Sure, I want to be around for my son, but I want to be around for my son and have an ass so perfect, one could bounce a quarter off of it.  Is that wrong?

 

 

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.

 

Bounce to a Cure for Scleroderma

Man ding trick on a pogo stick

Last year, James Roumeliotis, founder of Bounce to a Cure made it into the Guinness Book Of World Records for The farthest Distance Traveled on a Pogo Stick.  Watch this inspiring video with highlights from James’ Journey through Pogopalooza’s Park at The OC Fair in Costa Mesa.

This year, James will attempt to break another world record at Pogopalooza 10 in New York.  I will be cheering him on from California and sharing about his progress.  Please visit and like Bounce to a Cure’s Facebook page & like and if you are twitter, you can find him @BouncetoaCure.  He is using his talent to help scleroderma patients by raising awareness and funds for scleroderma research, for the Scleroderma Research Foundation.

I admire James and I am so honored to be working with him to help spread the word!

Visit his website, Bounce to a Cure.  He’s working with some partners you might recognize.  I don’t want to give too much away, but you may see a turtle there…

Scleroderma Is Not ‘Just A Skin Condition’

 

I recently spoke with a customer service representative at the Social Security Office.  She is tasked with asking questions, and making recommendations for the person seeking help.  So, I did a little research.

Today, 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 are a bit unrealistic.  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.  I make some comments in this post that may incite retaliation.  I’m okay with that.

If you have healthcare where you are 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 and 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 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 with no 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 and thinks it’s ‘just a skin disease’.  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.  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 syptoms 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.  

So, those are my comments about those 5 steps based on 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 you tools, then fight.

 

Scleroderma Awareness Month is Over…

 

 

As a scleroderma patient, I feel this would be my time to list my wishes.  Of course World Scleroderma Awareness Day isn’t Christmas.  But the last hour in the month of Scleroderma Awareness Month is a great time to make requests.   You know how we tell our kids to make a list for Santa, the Great Pumpkin or “NAME HERE”. Because even if there is no Santa, the Great Pumpkin or “NAME HERE”, there is always an eager parent or loved one looking to fulfill at least one wish of many, on a list of wishes.  Right now there are researchers working on a cure to fulfill at least one of my wishes.  And there are doctors trying to fulfill the wishes of patients around the world.   Yes, I am equating researchers and those helping them to Santa’s Elves.  They do they work they do because someone, somewhere said, “I wish I could help.”

So, how about the Scleroderma Giraffe?  Yes, my “NAME HERE”,  being will be to the Scleroderma Giraffe.  And instead of elves, the Scleroderma Giraffe has gnomes.  (What?  You don’t like the Scleroderma Giraffe?  Write your own damn blog.)

Dear Scleroderma Giraffe,

First, I would like to say that it is really cool that you are able to have your head so high, then bring it down low to drink water, then bring it back up without passing out.   That is really cool.

I have a lot to ask, so I’ve narrowed it down to two.

1.  You know I’m going to ask for a cure.  (I had to ask.)  Click here for the Peter Griffin Argument. 

2.  Okay, how about some more of those breakthroughs in research?  Thanks for the break throughs so far, and I look forward to celebrating more.

Well, I think that covers it for now.  I could  go on for days with requests, but I would really like it if you paid less attention to what I’m writing and get back to helping the gnomes with research.  I know you are able to read faster  because of your giraffe magic, but there are lots of patients who can’t wait one extra minute.

Sincerely,

Karen

Scleroderma Awareness Day

 

 

As a patient, I don’t need a day to make me aware of scleroderma, but I am glad there is a day proclaimed for scleroderma awareness.

Today, you will read about patients fighting for their lives and treatment.  I’m going to do something just a little different: I’m going to show you what I can do because of treatment available for scleroderma patients.

 

 

 

 

 

 

 

 

 

 

I am here because of research and exceptional care.

I also am here because I have learned to be my own best advocate.

I am also still here because scleroderma is not my life.

Instead of providing a list of  how it’s not, here are some pictures of me fighting.  This is Kevin and he was kind enough to fight with me at West Coast Krav Maga.

If you have scleroderma, remind yourself it does not have you.  If you don’t have scleroderma, share something hopeful about patients with scleroderma, or about breakthroughs in research, treatment and care.

I say share something hopeful, because scleroderma is a debilitating, soul sucking fatal disease.  Twenty years ago, I did not think I would still be here.  I certainly didn’t think I would be able to have my healthy nine year old son and I did not expect to be working my way to be a yellow belt doing Krav Maga.

 

 

What would I say to someone newly diagnosed with scleroderma today?

I  would say:  Expect the unexpected.  Don’t give up even when it feels hopeless.  Get treatment for depression.  Exercise.

 

 

 

 

 

 

 

 

Scleroderma is going to knock you on your ass.   It may take a while, but you can get back up.  There are no guarantees, only hope.  Keep going.  Get back up after you get knocked down, and get your hair pulled every now and then.

 

 

 

 

A very special thank you to West Coast Krav Maga, and Kevin!