Scleroderma and Dental Health

I have been taking time off from stand-up comedy to take care of my dental health. Tomorrow I will be undergoing the third in a series of four surgeries to rebuild my gum tissue destroyed by scleroderma.

If you are a newly diagnosed patient, try to stay calm while reading. What happened to me, may not happen to you. I was diagnosed twenty two years ago. Many of the damage done, might have been prevented by new treatments available today.

Scleroderma patients need their dental health monitored closely. Sure, it’s important for everyone, but because our skin tightens around our face, our mouths may have difficulty closing and clearing chewed food because our cheeks don’t expand to get that saliva moving while we chew. But wait… There’s more!

Raynaud’s effects the blood flow to gums and teeth. Gums can become receded, food gets caught in spaces created by the gum recession, teeth come loose because ligaments are effected, the tongue can become stiff and make chewing and speaking difficult, hygiene can be tough because of reduced range of motion in hands and if you run into complications that nearly kill you, dental problems become secondary and it’s about keeping the patient alive, so after surviving there’s some work to do. Did I mention that salivary glands don’t work properly or because of inability to close one’s mouth, teeth can shatter?

Now that’s a list! In my case, I have gum recession. My gums have receded so much, I can use a small pipe cleaner to floss my teeth below the gumline. Most scleroderma patients have frequent cavities and root canals because one tiny piece of food that is missed can cause great big problems.

I brush my teeth after every meal. If I see blood in the toothpaste spit, I know something is wedged in there and I get it out. Early in my diagnosis, my ex-boyfriend’s sister was a hygienist and she showed me how to brush my gums. I am not afraid to brush where it hurts. In fact, if I get a toothache, I get my kid’s sized toothbrush and a dental implement and remove the foreign object. When a piece of food is lodged beneath my teeth, the gums react and a pocket forms around the object. So, I gently work on the pocket until it’s broken and carefully remove the popcorn kernel or chowmein noodle or whatever. Once it’s removed, the pain is gone. Maybe it’s home surgery. Maybe I’m sharing too much. My point is, my dental hygiene is excellent when I go to the dentist.

So, after years of having extra “closet” space between my teeth below the gumline and small repairs to the most receded teeth, donor tissue will be used on the entire bottom of my teeth. After working with many periodontists over the past twenty years, I am getting my gums rebuilt.

It took a lot of work to keep my teeth healthy. Not to mention, I am not genetically predisposed to cavities. Sometimes it’s not poor hygene that causes cavities. Some folks have naturally week enamel. Sealants are available, but are expensive if you’re not 100% service connected like I am. It’s free for me. Dental care is not free to all veterans. Only those who are 100% service connected. I would not be able to afford the preventative measures in addition to the repair and restoration I’m undergoing. (Did I mention in my opinion, $$=healthcare and mobility? If I did not have Veterans healthcare, I would be long dead, but that’s a whole other post.)

Tomorrow is a big day for me. I’ll talk about it when I’m healed. Until then, read about this study. Oral and periodontal manifestations associated with systemic sclerosis.

If you’re newly diagnosed, or concerned about the future of your periodontal health, ask your dentist for a referral to a periodontist to establish a baseline of your teeth before, or in early stages of recession. Don’t be afraid to ask about dental plans or discounts. Periodontists have bills to pay just like we do, but if they can, professionals will cut you a break. Talk to local periodontal schools, but be sure to ask for students with a lot of experience. Or, see if an instructor would be willing to use you as a teaching subject. I feel like this should sound weird, but scleroderma is rare. If we can’t afford care for our teeth, because for some dumb reason, teeth are considered “cosmetic”. I call b*llsh*t because our teeth are the entrance to our digestive system. Good saliva ability and proper, thorough chewing helps us better digest our food and prevent esophageal injury and choking. (Teeth are cosmetic, my a**!)

NOTE: My mouth has difficulty opening wide enough. My periodontist understands this and does tricks I don’t know how to describe. It is painful, but it is less painful if I can stay relaxed. The site of the surgery is numb, but tugging and moving my mouth to give access is what’s painful. Here is what helps: Meditation, deep breathing and music in my earbuds. I have about 10 years experience with meditation. Prayer can also be used, because saying words and focusing on them is a way to meditate. I listen to music that is calming and I am very familiar to me, so my mind can follow the words and music. When my mouth is tugged painfully, I do deep breathing and center myself. Long story short: Learning relaxation techniques and practicing them, paid off for me.

Was that a blog entry, or rant filled with lots of information? I’ll never tell, because I have no idea.

Fry of Futurama holding m
Ever feel so broke, even payment arrangements are denied?

Scleroderma Awareness Month 2016

Scleroderma awareness is not all rubber bracelets and t-shirts. It’s about sharing and teaching others about the hard work being done for patients, providers and caregivers

Wednesday is the start of #scleroderma awareness month. There are different types of scleroderma; limited, morphea and diffuse. I refer to diffuse as “The Fast and The Furious” type, because most medical providers have little experience with scleroderma, many patients with diffuse scleroderma find out later in the disease process; which means it’s more likely to be fatal, faster. Kids can get scleroderma as well, forcing them into aggressive treatment on their young bodies. Awareness for the public is a great idea, in addition to the public, medical professionals need diagnostic training. The more physicians and nurses who recognize symptoms and signs, the better the chance of survival for scleroderma patients.

Thirty years ago, scleroderma was a death sentence. Even my diagnosis in 1994, most physicians I worked with did not believe I would live to see my 30th birthday. Here I am in my mid-forties. Make no mistake, scleroderma is a progressive, degenerative disease that hardens connective tissue, which is everywhere. I have fought to stay here by lifesaving treatments and hunkering down to survive the worst. I am only here because of the research done to treat the progression of scleroderma. Donate to research, provider education and patient education and support. You will save lives.

Unfortunately, I will be unable to attend the Scleroderma Foundation, Southern California Chapter walk this upcoming weekend. I will be working on a movie set, thanks to the hard work of those who work to improve lives of all patients living with a progressive degenerative disease. Life didn’t turn out how I planned, but life is good. (Does anyone’s life ever turn out exactly as planned?)

My secret is not a good attitude. (By the way, I hate that poster that the only disability is a bad attitude. It’s fluffy bullshit that makes people who aren’t disabled, feel better. See, my attitude is actually quite bitchy.) The number one reason why I am able to thrive, is because I got treatment for my depression. The chemicals in my brain, actually changed because of my depression. Depression is an unseen side effect of scleroderma. I learned to grieve for my losses and find purpose in my life. Not like some lofty help-the-planet kind of purpose, but reasons I want to be here. I don’t want to be a poster child for scleroderma. I did at one time, but now, no. I want to be known as a mom, sister, writer, comedian and dog love who happened to have scleroderma. I am not my scleroderma. No one is their scleroderma. >(Click to read about my experience with depression.)

    Please visit my blog page, The Mighty Turtle. I was diagnosed back in 1994. I began blogging in 2009. I am currently in a screenwriting mentor program, a stand-up comedian and soon, producer. Life is not over after a scleroderma diagnosis. Research is delaying death for many, but we have much more to do to help patients live with the disabilities caused by scleroderma as well as stop scleroderma from killing those who can’t stop it.

Glenn Frey’s Death: Risk vs Benefits of Medication

This month we have lost entertainment icons. I listened to David Bowie’s album, Ziggy Stardust and the Spiders from Mars while afloat during Desert Storm, Shield and Watch. When I hear songs by The Eagles, I am flooded with memories of my early childhood summers spent on the beaches of southern California. I have many memories tied to music and I could go on, but that’s a whole other post. I’d like to talk about some things popping up in social media and news regarding Glenn Frey’s medications, and speculation of how it may have contributed to the cause of his death.

Patients like me, with chronic illnesses get mountains of advice from well-meaning friends and family encouraging us to walk away from science-based, researched treatment to more natural alternative treatments. alternative None of us were in the room with Glenn Frey and his family when he made treatment decisions, but chances are they carefully weighed the risks versus benefits. Like many patients, he risked illnesses because of a compromised immune system, and the many variables affecting any illness as it comes up.

My reason for writing this post is my concern about alternative treatment advocates, anti-vaxxers and supplement sales people, will use this press as a selling point for their useless products and sometimes dangerous advice. My message with this post is that there will always be someone selling hope. There will always be risk. Hell, the treatment I’ve been on since 2007, lists Lymphoma as a “side effect”. I get my blood work and monitor my health and continue my treatment because it has increased my mobility, stabilized my lung function and I am living well with my scleroderma. I no longer suffer. I have good and bad days like everyone, but suffering is not my way of life.

I urge patients to do their research. There is no “Google University”, and that many blogs quote other blogs as “proof” of their opinions and suggestions. Don’t listen to the Jenny McCarthys, because they are delusional self-important and ignorant.

Patients have to realistically weight risks versus benefits. Complications from illnesses like scleroderma, sarcoidosis or rheumatoid arthritis can hit us like a freight train, and if we’re not killed, we find ways to jump on and ride out the worst.

Thank You, Queen Latifah. That Was A Perfect Amount of Scleroderma

When it was announced Queen Latifah would be talking about her mom’s diagnosis about scleroderma on her show, I was skeptical.  First, I’m going to tell you why I liked it, hoping she will read it or someone will tell her about it.

 

Scleroderma does not only devastate the patient.  I have watched my family, watch me go through procedures, unknown prognoses and loss of abilities.  I see how scleroderma hurts their heart and soul.  I comment Queen Latifah for keeping the news to herself, and focusing on her family, especially her mom.  And if you are reading this post, Queen Latifah, thank you for not only sharing with your audience and the world about scleroderma; thank you for showing them that as hard as it may be, there is more to you and your mom than scleroderma.

 

Now, what I loved about her segment:

 

It was short.  She relayed a heart-felt message and went forward with her show.

 

She  said, “There is treatment.”  The last 20 years, every time scleroderma is mentioned, there are real pictures of people with scleroderma enduring the most painful, awful parts- not that it is bad- but because there is treatment, I believe damage can be prevented.  So often, patients with scleroderma are portrayed as victims with no hope.  And yes, I’m a realist, I know that no hop can be very real for many patient with scleroderma, but we need to stop that and create hope.  For example, when my hands were cur;ling, I was received occupational therapy once a week that helped me manage pain and keep range of motion.  When I moved, and got a new occupational therapist, she informed me I was not worth the funds required to keep me moving and I should just sit back and face my fate.  I will never know if I could have maintained my hands, because she never gave me a chance.  Currently, I have scarring in my lungs from pulmonary fibrosis.  Doctors believe that exercise is helping my lungs work better.  Luckily, I can exercise my lungs and I don’t need assistance, like I needed with my hands.

 

Look, as a patient, I don’t need a long segment about the worst of scleroderma.  It will get the channel changed.  Let’s face it, we are a shiny, “happy” culture that has the power to shut off the ugly in life.  Scleroderma is not rainbows and unicorns.  Queen Latifah gave an effective message, mentioned that it could be treated and gave her audience a place to find more information.

 

Queen Latifah’s mom is fighting for her life.  How she did her message was perfect.  No one should be expected to speak through tears on camera.  Thank you Queen Latifah, for sharing a piece of your journey and  making scleroderma a topic of conversation around the world.

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…

Feeling Square Peg-ish…

 

 

At 42, I still feel like a square peg. Come on, you remember the show about Carrie before Sex in the City. I’m no Carrie. Actually, I’m more an Amanda because as I have been told by one or more dates that I am too analytical. I disagree. If I was truly analytical, I would have looked up the correct use of “too” in that last sentence. Maybe that’s the wrong use of analytical. Maybe I’m just plain sloppy. What were we talking about? Oh, right, I’m a square peg. I had nachos earlier though, and I feel more round than anything right now.

 

Two girls from the cast of 80's TV show, Square Pegs.
SJP before Sex in the City. I related more to Square Pegs.

 

I was feeling square peg-ish because I read other blogs and had problems relating. I kind of wondered that maybe I’m just a bit bitchy, but then I realized I enjoyed reading the stories of others. No, wait I didn’t enjoy reading: I loved reading about the good, the bad and finding hope – sometimes not find hope, but just being.   We all have different events, but share the same feelings of grief, loss and hope, from different victories and milestones.

 

Maybe what I failed to realize before I started writing this was that these three paragraphs may have taken up five minutes, you, the reader will never get back. Then, I thought if it took a person five minutes to read this, my syntax and grammar must be horrible, but my content is just interesting enough to keep you reading. And that like me, maybe you feel like a square peg too. Maybe we are all square pegs who are not so unique and alone, but because we feel like it, we remain isolated.

 

I think I just confused myself. What were we talking about? Oh, right: Sex in the City.

 

Don’t Hate The Playa, Hate The Game.

Then Set Aside Your Anger & Get to Work.

 

 

  In a place called, Wisconsin...

 

I was “awarded” a rating of 100% service connected disability.  See, I was “lucky” enough to have symptoms of scleroderma while on active duty in The Navy.

Early in my diagnosis back in 1994, and through the years despite my times of  inappropriate coping, I received the best possible care.  I broke the “rules” to get it.   In 2007, I was diagnosed with sarcoidosis after 14 years of symptoms that were confused with scleroderma symptoms, thanks to my persistence and the listening ears of my rheumatologist  and pulmonologist at UCLA medical center.  We owned a business at the time, and I was in charge of insurance benefits.  Of course, we had the best insurance money could buy for our employees (before we went out of business) and I used that insurance to see specialists recommended by my rheumtologist at the VA Hospital, who had no idea how to proceed with my treatment.

One lucky day, my rheumatologist asked, “Do yo have insurance?” and he referred me to colleague he now collaborates with to keep me alive and active.     Of course, it took some time.  I met the specialist at UCLA in 2005 and got my sarcoidosis diagnosis in 2007 after frequent  shleps from Murrieta to Los Angeles.  Once I got the biopsy that showed I had sarcoidosis, my rheumatologist prescribed Remicade infusions in addition to Methotrexate.  Long story short, after some time, the lymph nodes in my chest shrank, and it became easier to breathe.

Now, I enjoy Remicade every eight weeks at the VA Hospital.  And here’s where I broke the rules:  For my diagnosis, Remicade is number three in medication formulary.  If I had received my first treatment at the VA I would have had to fail Humira and one more IV drug before being given Remicade.  My rheumatologist at UCLA knew from my medical history and his experience with autoimmune diseases that Remicade was best for me.  So, how did I slip that by the paper pushers?  Golden Insurance.

My first infusion did need approval, because like the VA, other drugs were less expensive and Remicade was not the first choice of health insurance administrators.

Now, don’t go vilifying insurance administrators.  Like many Americans, they are probably overworked and underpaid.  And remember they have health insurance in their title.  Their job is to work on  behalf of a for-profit company.  Sure, an insurance company might give them cute names, like “customer care representatives”, throw words like “advocate” in their job title; but they are paid by the insurance company.  They are human and have responsibilities, they are not “the bad guy”.  They just need information.  And because like me, you or someone you know might have one or two chronic illness diagnoses that no one’s ever heard of and there is a lot of new information out there.  Of course there are crappy doctors, but you will find many doctors who are willing to help you advocate for yourself.  To get what you need, it’s just a matter of getting the right information to those who write the checks.

If – no, WHEN you find a doctor out there who will talk about non-formulary drugs that might work for you, or if you ask they will offer the name of non-formulary drugs to advocate getting, you need to get to advocatin’.   You may need to make sure the insurance company gets the information from the doctor to the insurance company .  This means opening up lines of communication between insurance administrators or “customer care representatives”.  (Really, all they are is an agent of the “guy” with the gold.  Remember, he who has the gold, makes the rules…)  This means yelling and screaming exactly what you think of them is not the right course of action. Don’t panic if you have already done this.  You just yelled at someone, so apologize and try to reopen communication.  I speak from experience on this one.  I have yelled at my share of “guys” who know THE guy.  And an apology is a nice way to open the door to communicate and get this person exactly what they need to get The Guy to part with his gold on your behalf.

You know what sucks the most about all of what I just said?   After all that work, most patients still don’t get what they need because of high copays.  I’ll get to that later.   See, I have the luxury of universal healthcare from the Veteran’s Administration.  It’s no picnic, but I have no copays and they can never deny me care,ever for any reason, until I’m dead. Which has turned out to be a lot longer than they thought…    

Yes, I know you have paid The Guy, but The Guy made some pretty tricky rules to make it so there is “gold”.  Look, its easy to get mad at the system.  But anger is time you are wasting when you could be making phone calls or faxing documents.  Yes, it sucks.  But don’t hate the playa, hate the game,  then set your hate aside and get to work.  Your life depends on it.

So, how did I manage to get non-formulary treatment?  My doctor submitted the documentation needed to show the insurance company that the best course of treatment was Remicade.  So, I got my first few infusions using my Golden Insurance.  Then, our company went under.   I disagree with my ex-husband it was The Golden Insurance that did us in.  It was, after all 2008 and everyone was going out of business.  So, we lost our insurance and I headed back to VA healthcare.

Back at the VA, my doctors there were working with my rheumatologist and other specialists at UCLA: Also known as: Continuity of Care. I was being treated with Remicade, but that was third in line in the formulary.  How did we squeak this one by?  Funny you should ask…

See if a patient is doing well on a medication, it is unethical to change the course of treatment.  Now, not every doctor honors this.  Again, don’t hate the playa, hate the game; then set aside your anger and get to work.  If your doctor tries to switch you, it’s going to be a fight.  Get used to it.  I know it sucks.  Life is unfair, but we do what we have to.  Don’t worry, you’ll make “don’t hate the playa” your mantra soon enough.

So back to our story…  So, my rheumatologist at the VA saw how well I was doing on Remicade plus Viagara (The same fight happened with Viagra as well).  It took some time.  I got approval for the Remciade first, then eventually, Viagra was approved.  I kicked open the door for Viagra at my local VA Hospital for women.  It’s considered a recreational drug for men.  And I did have to bring my medical records to my doctors at the VA from UCLA.  I still do.  What a nice happy ending, right?

You know what I hate most about my happy ending?  That patients who could benefit from the same meds I get, cannot get them because they have to deal with copays.  See, when I had The Golden Insurance, I could afford copays and when the business tanked, bankruptcy took care of the loose ends.  But as a 100% service connected veteran, my care and medication is covered 100% for everything.  EVERYTHING.  I pay no copays.  So I have access to Viagra and Remicade and Nexium .  Also non-formulary.   Yeah, like I said; kickin’ down doors.

Now, you may be thinking, but a copay is a fraction of the cost, right?  Right.  But in 2009, Viagra was $6.00 per pill.  And one Remicade infusion cost… It’s going to be legen-wait for it… $22,000.00 per infusion..dary.

 

Now, imagine yourself with no VA Healthcare or Golden Insurance.  Maybe you have a kid or two and recently find yourself collecting an “entitlement” check of $1037.00 per month, plus $537.00 per kid.  Living on such a “lavish salary” does’t leave much room for rent, food, clothing, school supplies for the kids and maybe there;s a birthday coming up for one of your little ones.   Do you see where I am going with this?  How many chronic ill and disabled parents have foregone their own medication to feed and house their own children?  (This is the part where I get sick.)

In 1996, I went into a patient advocate’s office and asked if my benefits were some kind of mistake.  See, I was given a pension and healthcare.  I didn’t feel that sick.

The advocate told me that I was entitled to these benefits.  That I had served my country and earned them.  She told me my that my prognosis was not good and I would need them.  I walked out of her office feeling not-so-entitled, but understood that I could not work and earn enough money to pay insurance to keep health benefits.  I had no idea that people who were not veterans, got a whole lot less and did not have 100% health coverage.  Yes, I even have dental.

So, I’m not sure where to go from here, but I’m starting something.   I am in some kind of remission-esque stable condition.  Scleroderma and sarcoidosis are both progressive diseases and the meds are only slowing it down.  But, I’m feeling good.  I;m no longer a hot mess with a blog.  I’m an active patient who’s going to go out and show the world that treatment of symptoms with the right meds does work.  That it’s not a waste of money to do research and make sure patients have access to care and treatment.

And so it begins, a fact finding mission.  Healthcare for all:  The Final Frontier.

Did you see how I started off all Star Wars then finished with Star Trek?  I know you felt that Jedi Mind Meld.

Other people have tried it.  There are programs set to go in place in 2014.  But there are people who can’t wait that long.  And starting another non-profit seems nuts when there are so many that need funding.  So, I’m going to go out in the world and figure this out.  I’m feeling good. I’ll have my bad days.  More than anything, scleroderma and sarcoidosis have taught me that I am mortal.  I plan to live a long time, but I have very little say in how long that really is.  I could mistake rat poison for Skinny & Sweet.  Because,  “It looks like Skinny & Sweet… except for the scull and crossbones.”  I couldn’t find a clip from the movie 9 to 5 for the younglings   So here is Honeybadger narrating the hummingbird.  Holy shit!  They’re fast…   

I Feel The Need to Read…

It’s been a long time since my diagnosis. So much has happened since 1994.  We have some so far with research and awareness, yet it still feels like I’m stuck in the mud in Alabama like a mash-up between the movies Ground Hog Day and My Cousin Vinnie.

I have decided to sit out the Health Activist Writer’s Month Challenge, and read as many blog posts of those who do write, as I possibly can.  There are some great voices out there and I really want to take the time to hear what they have to say.  I feel like I haven’t been as active as I can be in the health activist community.  And not everyone can or even wants to write, so I am going to participate by reading and cheering on bloggers and encouraging others to read by sharing what inspires me.

I am not the only person with scleroderma, sarcoidosis or any chronic illness to have something to say.  There is a time for everyone with a voice to speak out.  There is also a time to listen.  This is my time to listen.  I just want to fall in love with some more bloggers. I have read and shared several posts this month already and I am starting to feel inspired by these new and not-so-new voices.

So, there will be posts here, but please visit Wego Health or search #HAWMC on Twitter and read some great blogs.  Don’t just read what I share.  I can’t possibly read them all and if you find posts that inspire you, I hope you will share. We don’t all need to blog, but we all need to encourage  those who do.  So, show your support and if you haven’t already liked Wego on Face Book or are following them on Twitter: Go now & do!

Introducing… The Mighty Turtle Amazon Store

Through the years, I have found many products that have bee helpful.  Since I will be writing product reviews for items, I thought: Why not link a store to Amazon?  So, here it is.  The Mighty Turtle Amazon Store

It’s a great way to assist those looking for items, to shop and what I earn will help with the expense of The Mighty Turtle.  All my work here is volunteer.   I only wish to raise funds for non-profits researching cures or patient education, so this store is win-win for both readers and me.

Thank you for supporting The Mighty Turtle by shopping here.  I will be writing product reviews for each item, but if you have a question about any product in the store, be sure to ask.  My goal is to raise awareness and save time for other patients.