Scleroderma and Dental Health

By Karen | Filed in Scleroderma

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 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.

        

Last night I had the honor of attending the launch party for Valor Hairspray at Pearls Rooftop on Sunset. Here, is Gina Elise, founder of Pin-Ups For Vets with Beauty & Pin-Ups founder. Gina’s photo is on the bottle and 10% of all sales of Valor, go to Pin-Ups For Vets, a non-profit organization supporting America’s hospitalized veterans. As someone who spent 45 days in a long term care unit, I know the need for support of hospitalized veterans. Many of the veterans I met while there were permanent residents and rarely have visitors. And by rarely, I mean; never have visitors. Pin-Ups for Vets volunteers visit hospitalized veterans. Volunteers are a mix of civilians, active duty and veterans. They sit down, visit, and get to know hospitalized veterans. Four of the eight women you can see in this photo are veterans, the two women on the viewer’s left are active duty military who traveled from San Diego for the launch party.

I have met so many wonderful women with Pin-Ups for Vets. Those of you who know me, know that I’m very self conscious of my hands, and the way #scleroderma has changed my face. I’m so self conscious, I try to hide myself in public, contradicting my own goals of educating the public about scleroderma. (The Mighty Turtle) I rarely go sleeveless and shy away from photos. (I’m in the black and red polka dots on your far right – you can’t see my face. See what I did there?) The fun of learning Pin-Up make-up and fashion, has been slowly luring me out of my shell.

Since the birth of my son, twelve years ago, I have been trying to take more pictures for him, but I do it as little as possible and I rarely share them. Pin-Ups for Vets is made up of men and women who have made Brave Is Beautiful a reality to me. I can count on them for encouragement and inspiration. There is something special about getting ready for events and pin-up fashion that has encouraged me like nothing else has done before, and I’m learning how to smile again for the camera. Valor Launch

Keep an eye out for more adventures and like Pin-Ups For Vets page on Facebook, and their touring members, Pin-Ups on Tour. Pin-ups on tour will be embarking on a tour to entertain with shows that embody the 1940’s cantina atmosphere of World War II, and visit veterans in hospitals around the country

        

And we’ll squander this gift on just the statement and not the ongoing problem with veterans care and benefits.

Take a look around you. (I will too, we’re in this together) How many veterans do we see? How do we know that person we see living on the street is not a veteran. How do we know that woman or man in front of us at the grocery store using her EBT card, is not a veteran?

Of course we Americans will say we support our veterans. How many of us give our time to visit veterans in the long term stay ward of the VA hospital? I don’t. Some of us do visit during the Christmas season, so we can click on our Facebook profile from 2013 and say: Look at this veteran I visited in the long-term ward of the veterans hospital. AND it’s a girl veteran. (True story.) I’m not talking about people who actually visit veterans and stay in the room long enough to have a meaningful conversation.

My point is, caring for The American Veteran is an idea, or wish by the American people and that’s about it. Not because we are all a**holes, but because maybe we are working hard to make ends meet and taking care of our families. The only time some of us may have to see the news, is the 30 minutes before Colbert and can barely stay awake for that.

I’m glad the VA secretary compared veterans wait times to waiting in line at Disneyland. Thank you, Mr. Secretary for a great conversation starter. Of course, journalists, pundits and viewers will squander this wonderful opportunity to discuss what’s going on with the Veterans Healthcare System, and argue over the comparison. Here is where I depart from we. If you’re focusing on the comparison only, you are part of the problem. There is something to his remark, and it can be an opportunity to do something about it. Look at the voting records of our presidential and congressional candidates. Use the anger or offense you may feel to take a look at the problem. We can keep changing the secretary and nothing will change, except the name that follows the word, secretary. I have been visiting Disneyland for over forty years and in the VA Healthcare System for twenty. This is a conversation. So, what can the we do about this besides buy more car magnets and complain?

        

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.

        

I’m Not Here to Inspire You

By Karen | Filed in Scleroderma
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.

        
This post began as a Facebook post, sharing the Science Babe’s, Slate article about homeopathic medicine. Then, I started talking about my own personal experience  with homeopathic treatment for scleroderma, and here we are.
Figure investigating box of hope.Please enjoy this scenic car ride to my point about my experience using homeopathic medicine.
In 1996, I received homeopathic treatment for scleroderma.  If you are considering homeopathic remedies for #scleroderma, #sarcoidosis, a chronic condition, or know someone who is, you may want to keep reading.
Homeopathic Hope
I have been there.  Having an incurable disease that very few doctors even know about, can feel hopeless.  I was there.  I was frightened and I needed something to believe.   Homeopathic medicine sounded promising. No one else had answers, why not?
 In 1996 I worked with one chiropractor using homeopathic treatments. Along with some oral selenium tablets,  she had me soak my hands in a solution of what I will call “dead fish powder”.  It was made from ground up fish bones and other stuff. Of course, my ulcers became worse. The chiropractor with a PhD in philosophy, told me the swelling meant it was working. According to her, homeopathic medicine makes everything worse before it gets better. It resulted in a MRSA infection that went undiagnosed for nine years. (And a dependence on Oxycodone/paracetamol or (Percocet). But that’s a whole other post.)
By 2005, oozing ulcers had become a normal part of my life.  Just another scleroderma complication I had learned to live with.  That same year,  my raynauds had become so acute, the routine treatment of niphedpine to relax the muscles surrounding the artery to my left thumb. offered no relief.  I was instructed by my rheumatologist, to double my dose  of niphedipine at home.  He did warn I could get a headache, which is short for:  Your head will feel like it’s been  hit by an RPG shaped like a ball-peen hammer.  Doctors use abbreviations all the time.
My pulmonologist suggested  Rovatio treatment for my #Raynauds. My doctor wanted to make sure my blood pressure was stable while taking it. There were very few published studies done on raynaud’s patients by 2005.  I did not have pulmonary hypertension, so my doctor monitored me 24/7 during the treatment to make sure my blood pressure did not plunge to dangerous levels, causing heart failure.  My pulmonologist had me admitted me to the cardiac wing of UCLA, and by cardiac wing, I mean The David Geffen one you have heard about. I was going to be a case study for raynauds treatment protocols.  (Oh, if I had a dine for every doctor who said he or she was going to put me in a medical journal…)  The patient across the hall had an artificial heart he carried with him in a suitcase while he waited for a donor heart. I also got to share a room with the original Colgate Girl. In my 20 years in hospitals, she was the only roommate I have ever liked. I do wish I had kept in touch.  She was a remarkably kind woman with the most entertaining stories.
Wait, what were we talking about?  Oh yeah- complications of scleroderma treated with from  homeopathic remedies.
The Rovatio seemed effective in bringing blood flow to my extremities, but there was another problem.  During that two week hospital stay, I had a MRSA flare. It manifested as swelling and oozy ulcers on my fingers, bridge of my nose and elbows. Raynauds had limited the blood flow, weakening the integrity of my skin, resulting in constant infections on my fingers. I had become so accustomed to my oozing wounds, and because information was limited regarding treatment of scleroderma, the oozing ulcers were just considered something I needed to learn to live with by doctors. Well at least those who weren’t specialists. I had to commute over an hour one way to get treatment and care for scleroderma from the VA, and three hours one-way to see my scleroderma specialist, Dr. Furst. So getting in my car every time my finger oozed, did not seem justifiable.
A few days into my hospital stay, my doctor wanted to know what the infection was, that seemed to be causing these oozing, painful wounds that appeared to be  spreading rapidly.  Ooze was swabbed and nothing grew. The antibiotics they threw at me were useless.   The infectious disease team did a thorough medical history.  They asked about the places I had been while in the Navy, and tests they did to link it to infectious diseases came up negative.  Then, my lab tests came back positive for a little infection known as MRSA.  That’s when my room became isolation.  It looked like a crime scene from the outside. Yellow tape with black writing was all over my door.   Anyone who entered my room, even to just deliver food, had to gown-up.
So the infectious disease doctors tried to nail down how I got it.  MRSA was in the news as the latest plague and it was popping up everywhere.  We discussed my wound care.   I have used band-aids  through the years.  Personally, I find them to be nice incubators for infections.  I used to wear up to three band-aids for one wound, which from a distance made my wounds less noticeable than a giant white gauze  pad, secured with tape around my fingers.  If you keep up with my blog, you would know how important it is to me that I do not appear sick.  So piling on band-aids seemed like a good idea.  They provided protection,but they can get gross from sweaty hands.   Then, there was this one time in California, when I was soaking my hands in some water I mixed with some powder I got from a homeopathic “doctor”.   I was doing it three times a day.  Apparently, soaking a hand with open wounds in ground up fish powder probably didn’t help.  It wasn’t sterile.  And it was left on my skin. and then I covered it with a band-aid, because you know- appearance.
I forgot to mention that when I was doing the fish powder treatment, I was visiting family and I was on mountains of Vicodin for swelling and drainage of the wounds in my fingers.  Of course, when I asked my homeopathic doctor about these obvious symptoms of infection, she told me not to worry.  That meant the toxins causing scleroderma were leaving my body.  Did you get that?  The lady with an advanced degree in philosophy, told me the yellow puss pouring out of my knuckles and finger tips was scleroderma leaving my body.  Eventually, I was seen by a doctor who said something about a negative stain staff infection.  Of course, he was a doctor and all he knew was how to prescribe antibiotics that made the oozing stop.  Well, at least for a while.  Eventually the antibiotics began to fail.  Ooze was just something I had to live with.  It did come and go through the years.
Looking back on the “fish powder fiasco”, I now know that my fingers were infected. maybe it wasn’t the fish power that caused it.  Maybe, it was that the infection had become so bad, it developed into MRSA.  Unfortunately, I can’t go back in time for a case study, so I guess we’ll just have to speculate.
Since 2005, I still get infections, but rarely.  When I get them, my doctors usually go straight to the MRSA meds after a usual antibiotic fails.  Depending on the stage of infection, sometimes they go right to the Vancomyacin.  nd then there was that time I had an infection in my foot, and the rheumatologist at the Long Beach VA, misdiagnosed me with osteomyelytis because she did not pay attention to my past medical history.  That was the time I was hospitalized for 45 days.  It was a misdiagnosis.  Better safe than sorry though, right?  (Yeah, I have nothing kind to say bout that rheumatologist.)
Look, I know how hopeful homeopathic medicine can sound after years of no answers for symptoms that question one’s own sanity.   And there are concentrations of the homeopathic remedies that are so weak, they have no physical effects, but do present a psychological benefit known as the placebo effect.  I have to be honest.  I have done things with crystals, that I believe helped.  Not because of the crystals themselves, but because of what I thought of the crystals.  It helped me to relax, which lowered my stress and I felt better, psychologically.  For weeks I held those crystals, or rocks in my hands, or would keep the in my pockets.   Those rocks made me want  to eat better and  exercise regularly, and wouldn’t you know it?  I felt better.  The rocks did nothing but give me something to believe in and that’s what helped me. But just because I felt better, that does not prove these things somehow cured me. I still have scleroderma and it is progressing.  I am eating well and exercising regularly.  Does it prove anything?  No, because it’s anecdotal:  A non-scientific account of my personal experience.  It does however, create more questions.
While research is going on, and  the wait for better treatment and a cure continues.  As we are learning through robust research, the homeopathic market continues to provide hope to the hopeless.  To be honest, I still spend  money on hope.  I keep it limited to things like beet juice or infused chocolate.  When recommends their homeopathic doctor, or I should take a trip to the vitamin aisle at Whole Foods, I use a mantra to help me accept the person’s advice gracefully. They do mean well.  So,  I gently say to myself and repeat until calm,  “You know what else is natural?  Arsenic, uranium and bullshit.”
        
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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!

 

        
Yoga mat, computer, theraband and coffee. To show what writer plans to do today.

 

 

And yes, even when you feel like you are dying.  

Scleroderma is a progressive, degenerative and fatal illness; but the fatality part can take decades.  When I was first diagnosed with scleroderma in 1994, I was expected to rest and wait and see if I lived through it.  I was discouraged by well meaning friends and family to buy and do whatever I wanted, because it was said, but implied that I was going to die.  And I did those things.  I spent money I should have saved or invested, but luckily someone did say something to me right after my diagnosis that I have kept in the back of my mind for twenty years.  It was my boyfriend at the time.  He went with me to the VA hospital doctor’s appointment and was in the waiting room after I was given the news I had scleroderma.  During our conversation on our three-hour ride home to La Crosse from Madison, he said, “Karen, you can be hit by a bus tomorrow.  You don’t know if this is going to kill you.”

And he was right.  Of course I’m going to die, but because I had this horrible diagnosis it did not invalidate that I felt pretty normal except for the Raynaud’s in my fingers and toes.  I could still exercise.  In fact, in 1996 I moved into an apartment down the street from an amazing running trail and began running.  I wasn’t dying.  Horrible things were happening, like the scare I had the first time I had to be admitted into the hospital for abdominal pain in 1995.  I had crippling abdominal pain and after the usual appendicitis and ectopic pregnancy diagnoses were ruled out, the next step was surgery.  That was the day I learned that Raynaud’s can happen anywhere in one’s body.  Well, not everywhere.  Just the blood vessels of any kind.  The team of doctors, after much deliberation were now trying to rule out the blood vessels to my colon were not in a severe Raynaud’s attack and caused a part of my colon to become necrotic.  CT scans were run, and as we waited for the results, the team was preparing for surgery because if that were the case, part of my colon if necrotic, would have to be removed.  I was waiting for test results to confirm a diagnosis that would require surgery.  If surgery was necessary, I was going to be put under anesthesia not knowing if I would wake up with a stoma and colostomy bag.

My room mate brought me to the ER, but she had to go to work.  I was alone, but I soon found out I wasn’t completely alone.  This also may have been the event that has endeared the state of Wisconsin to me, and it’s people.

For those of you who may not know, I moved to Wisconsin with my boyfriend to go to nursing school.  He was from West Salem, and his family consists of the nicest people I know on the planet.  By the time of this event, we had broken up.  Even though we were no longer together, his family still treated me like family.  If I needed something, they were there to help.  They were my “family” in Wisconsin, so I was never completely alone.  The luxury of that relationship and not having blood relatives nearby, which I learned from this experience, is that I did not have to watch a relative sit next to me for hours, feeling helpless and frightened.  Sure, I felt helpless and frightened.  But for some reason, when someone is with me when I go to a medical appointment, test or treatment, I feel responsible for their feelings.  I feel I need to comfort them.  Maybe that’s how I avoid feeling the fear and helplessness, by focusing on a person I am with.  I was alone in my hospital room.  I think I had called my mom.  But I was in the hospital, alone.

This was probably the longest I have ever waited for CT scan results.  Sure, the test was STAT, but I was in excruciating pain, and pain medication could not be administered until they knew what was happening.  You might be thinking: How cruel!  They let me lay there in pain.  I have a very high tolerance to pain, and I rarely cry from it.  This time, I was sobbing.  But, because there was no other way to know what was going on inside me, pain was the messenger.  I needed to feel if the pain would travel, or progress to a larger area.  Yeah, sure that sucks.  But I use pain all the time to let my body tells me what’s going on, and that has served me well these past twenty years.  It’s not easy to do, but I’ve done and continue to do it.  Don’t worry, I’m not crazy (as far as you know).  As soon as pain as a tool is no longer needed, I will take a morpheme injection without hesitation.  But while I waited for those results, time seemed to stand still.  There were times the pain got worse or less worse, but nothing below an 8 on the pain scale.

Finally, my doctor came in with the CT film (This was the 1990’s) and a nurse holding  a dose of morphine.  As she injected the shot into my IV, the doctor told me Raynaud’s in the blood vessels of my colon was ruled out.  He showed me my abdominal CT scan and my ovaries had these spots all over them that looked like exploding firecrackers.  I had fibroid cysts, and they were bursting, causing severe abdominal pain.  It wasn’t caught on an ex-ray, because it was all blood and  it was like Disneyland fireworks in there.  I think if I took a stethoscope to my abdomen, I could probably have heard Julie Andrews singing, “If You Wish Upon A Star”.

I had been taking Depro-prevera shots for about a year, and stopped when I broke up with my boyfriend.  I hadn’t had a period in months, so my eggs had been on standby.  So hearing about these bursting fibroids, I pictured my eggs fleeing my ovaries through the wrong exits and exploding.  (Pandemonium and mayhem.  I wish I knew how to animate, this would make a great cartoon.  I would call it: The Great Egg Exodus.)   So I got to go home with my colon intact.  It was the first time I learned loosing parts like my colon were possible, but you never know.  Here I am nearly twenty years later with an intact colon.

What endeared Wisconsin to me, was my small community.  I had no family, but I had people who cared and showed it.    My roommate brought me clothes.  Friends from school stopped by to see if I needed anything.   My ex-boyfriend stopped by to check on me and his sister called to see if I needed anything.  As I spent the next few years in Wisconsin, my ex-boyfriends family continued to invite me over for holidays, weddings and dinner.  I also had the privilege to get close to his sister Roberta,  while I was her roommate.

I want to tell you about Roberta, because although we barely kept in touch over the years- well, I’ll just explain.  I always thought that long after I had died from scleroderma, Roberta would have raised her family with her husband Chris, and live a long life watching her grandchildren come of age and showering them with the love and kindness she seemed to flow from the infinite source that was her spirit.  A few years ago, Roberta passed away from metastatic breast cancer.  As I write this, I am still puzzled I am here, and she is not.  I have no words to share about  the anger and confusion I feel over that.  I know, I’m a writer and I’m supposed to have an imagination, but some things are too deep for me to bleed onto this paper.  It only confirms my belief that Billy Joel was right:  Only the good die young.

My point is that you may be diagnosed with something that might kill you, but there is a possibility it won’t.  I read blogs and Facebook statuses of many scleroderma patients who are absolutely hopeless.  I read the phrase, “It’s in God’s hands now.”  Look, that may be true, it may be in God’s hands, but the passiveness of that statement disturbs me.  I have read people going to the ER for things I have been there for a ton of times, and saying goodbye as though they don’t expect to return from the hospital alive.  I’d be a liar if I said I didn’t have those thoughts sometimes, but they have become rare through the years.   When I am being admitted for something or in an ER, I shift my focus from my fear of the worst to what I am going to to do when I get out.  I plan for my recovery, and I plan to get back to my life.  Of course, it has taken me years to get to this point.  Perhaps I am overly optimistic because I have lived through so much.  I’m not sharing this to tell patients everything I do is right.  It’s not.  Everything I do is right for me.  But I am sharing this because I want patients to know the possibility of surviving the worst.  I’ve had well meaning doctors and family tell me to just rest all the time and not do anything I think might be hard.  To let people take care of me.  And during the really bad progression of the disease, help was necessary.  But I always believed their help would be temporary.  I’m not telling you to ignore people encouraging you to take care of yourself.  I am encouraging you as a patient, to try to do things that challenge you.  even if it’s walking.  In 1999, I went to Disneyland in a wheelchair, and not just to get to the front of the line.  I’ve rented motorized scooters.  When I go now, I walk around and wait in line like everyone else.  I play at Disneyland, the beach, and anywhere I can.  I even tried zip-lining.  I said tried.  I got the gear on and when I found out there was a rope course, I got the hell outta there.  My hands couldn’t take that.  But, maybe someday in the distant future they will.  Okay, that may be a little pie in the sky.  How about being able to open my hand, so that I can finally rub my son’s back with my hand and not my wrist and back side of my fingers.  Now that’s a goal I can accomplish.  But in order to do anything, I have to believe in the possibility.  Of course I’m aware it might not be possible, but I won’t know until I try.

My point is, don’t live like your dying.  Sure, jump out of an airplane wearing a parachute, but do it because you want to, not because you got a diagnosis and it’s uncertain you are terminal.  Don’t live like you’re dying.  It’s foolish.  Live like there’s possibility.  Look, we’re all going to die sometime.  We have no control over that, but don’t give up because you may have to fight hard to live.  Because the possibility you won’t die right away, is a very real possibility.

 

        

Getting The Full Picture

By Karen | Filed in Sarcoidosis, Scleroderma

 

Ever notice things in a photograph, you didn’t see while you were posing for the picture?  Here is what I have learned about my own behavior and mental health with a “photograph perspective”.

Finding the right antidepressant is no easy task.  So when we find one that does the best job with no side effects, or manageable side effects, it’s like someone threw a dead tree in your path, and the only way is to climb over it.  Of course, after taking a medication for years, I don’t always keep up with updates.  Every medication is not for everyone.  It’s a fact and quite honestly, it seems like common sense, but most of us never read labels.  Think about it.  Labels are updated as more information becomes available through research.  I don’t know if you are like me, but when I pick up a prescription I have been taking for years, I get a ten page document citing possible side effects and risks, and I hand it back to the pharmacy technician, and tell them to shred it.  I could wallpaper an entire housing development with all the medication information I have received.

Scleroderma

Side effects happen with all medications.

A few days ago, I was reading a blog post about a woman who quit Cymbalta cold turkey.   Sure I was a little shocked by someone talking about quitting a medication cold turkey with a possible side effect of suicide for some.  But this post by Crystal Lindell about Cymbalta, taught me an important lesson about how I form some opinions. I put down my iPad and started writing about how wrong she was, until I realized I was on a rant.  So I went back to her post, and followed links to her referenced prior blogs for more of her experience.

In an earlier post, she talks about how Cymbalta saved her life.  You should read it, 

Ms. Lindell’s post struck me on a personal level because my depression triggered by the pain and progression of my chronic illnesses changed the chemistry of my brain, and I nearly died.  Our experiences had similarities, but they were not the same.  I found myself comparing my issues to hers and thinking, “she’s wrong”, when it was I who was wrong.  Sometimes, I think I am using empathy, but it’s really not.  Instead of imagining what it would be like for them, I imagine what their experience would be like for me.  Yep, that sounds about right.  I make it all about me.  It kind of reminds me of “Do unto others, as you would have done to you.”  But most of the time, what might be right for me, would not be right for others.

I’m not sure if it’s because I am selfish.  For years, I have had to advocate for myself as a woman in a health care system designed for men (Veterans Healthcare) with two rare progressive, degenerative and potentially fatal conditions.  I realized I might be too self focused the day I brought my newborn son to his first pediatrician visit.  His doctor asked for my son’s medical history and out of sheer habit, I rattled off my own medical history.  It wasn’t that I put myself before my kid, it was just that answering that question had become so routine for me, I had an automated response.

I talk about it in a prior blog post.  and since seeking treatment for depression in 2000, I have changed medications many times. There were medications that put me to sleep, some that killed my libido and I have skipped doses of Cymbalta waiting for my prescription to arrive by mail and I can say that having sex during that time is pretty good, sex.  But taking myself off medication that did not reduce my libido, but my libido increased without them, was not worth risking my mental health.  Luckily, thanks to age and wisdom I know that  if I have amazing sex once, it can happen again.  So  I need to train my brain, so to speak.  Our mental state affects our sex.  The actual sex organ is our brains.  I know it doesn’t seem like that, but the response to it, is made by neural transmitters, nerves and hormones.  Look, if a medication completely shuts off your libido, like Paxil did to me,  it was the right decision for me, to change meds.  For me, Cymbalta had some side effects, but they were solvable with the addition of Welbutrin and training my brain.  The cool thing about that, is you can always find a willing participant (in the name of science, of course) to experiment with sex by trial and error.   And  as the brilliant Amy Schumer  put so eloquently, “…I can catch a dick whenever I want.”

For me, going off Cymbalta was not an option.  I did it for two months.  I handled the brain zaps and withdrawls with a little help from sedatives and pain meds prescribed by my doctor.  I was closely supervised by my psychiatrist and General Practitioner.  After two months,  the symptoms of my depression came back.  Lucky for me, I have a support system in place to check my depression.

When there is a change in my medication, or a potential trigger, I reach out to three people I would trust with my life, and ask them to watch for symptoms.  They don’t watch over me 24/7.  But they check in with me and ask me about triggers.

Triggers and Symptoms
I am diagnosed with Major Depression and Anxiety Disorder.  I’ve had years of therapy to determine my triggers, like specific people or events.  The people or events can be present, noticed and experienced without going into depression, but symptoms can be triggered by these events and or individuals.  Individuals do not trigger things on purpose, but we all have friends or family who bring us stress with their behaviors or conversations.  I had to learn to recognize the symptoms of the beginning of my triggered depression.  One of them I did not identify until 2004.  It was just after my son was born.  I was driving home with my sister in-law and my nephews and I had to drive on an overpass.  If you’re a southern California resident, it’s the one that takes you from the 91 east to the 15.  I was about to drive onto the ramp and I felt a nearly crippling fear of going on to the over pass, but because I had people in the car and it was in the middle of the night, I slowed down and drove extra careful.  I calmed down as soon as I was on the 15.  I had recognized this feeling before, but my fear was so intense, I knew I needed help.  I spoke to my therapist, and sure enough, an extreme fear of going over bridges is actually a thing. The depression had affected my “fight or flight” response by making it sensitive to activities.

Unlike Ms. Lindell, Cymbalta does not kill my creativity or sex drive.  I guess I’m just lucky.  Not every medication is for every one and not every pharmaceutical company labels their medication as accurate as they should be,  I have been on perhaps a dozen antidepressants in the past fifteen years.  There were some that gave me no sex drive, there are some that put me to sleep.  Right now, I’m on Cymbalta & Wellbutrin, with no sedatives.  I have some, but I don’t take them.  I guess it’s comforting to know they are there.  And I have to agree with Ms. Lindell that exercise is the best medicine for my pain.  But to battle my depression without meds, I need to do at least ninety minutes of cardio twice a day to keep me from falling into the abyss.  So exercise once a day and meds is a good mix for me.  Cymbalta may not work for millions of other people, but right now, it works for me. And when Cymbalta stops working, I will tell my support system what’s up.   I don’t need to be watched like I’m under  house arrest.   But by letting my friends know,  they are more likely to answer my phone calls when they are busy, or return my call immediately if they miss it.  There’s nothing wrong with having a plan.

About the good sex:  Well, I went from having no interest in sex because of my meds, to finding the right med that would allow me to feel like I might be interested.  It took changing  medication, yoga and exercise that helped and now my sex life is pretty damn good.  Like anything, it’s trial and error, having a good team of doctors ad having a willing participant to help with training your brain.

As for quitting any antidepressant cold turkey, I would not encourage anyone to do that without a doctor’s supervision and a group that will help observe your progress.  You don’t need to make a big deal of it.  Take three people and use them.  I never use only once person,because one observation, could be the wrong observation and two others can help counter the error.  One way to think of it is, when you are getting your picture taken, you really don’t know what’s going to show up in the photograph, until you can look at the picture itself.  Those three friends of mine help me identify what I can’t see while I am present in the “picture taking”.  It never hurts to have an extra set or two of helpful eyes.