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?