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?

It’s Not So Bad, If You Enjoy Walking into a Cactus.

 

This part’s a little gross.  If you’re eating, you may want to skip to the next section…

Over the weekend, I had a sore on my foot.  It turned out to be a blister.  My original fear was it was one of those lovely calcinosis sores and luckily, it wasn’t.  It did become infected, but it was an external infection, so  I was able to soak the infection puss out.  Then I removed the dead tissue with sterile small scissors found in suture removal kits, called debreeding. Debreeding must only be done by a trained healthcare professional.  (Remember, I am a Wound Care Jedi.  I was shown how to do this in 1996 and I  have nearly 20 years of experience. DO NOT TRY THIS AT HOME)  If you visit your doctor, you can ask for a referral to a wound care clinic (or something like it).

 

Beneath the floppy dead tissue of the blister, was beautiful  healthy skin, instead of empty space and more fluid I have found  in hundreds of sores on my hands.  This tells me my feet are getting the nutrition they need from blood.  Now that a hospital stay is not in my future, I can focus on preventing further infections.  It started as just a blister, but it became infected because I have been wearing flip flops around the house and outside.  The bacteria that infected my blister may have come from needing new flip flops, or dirt and crud on city streets.  (ewww)  Most peoaple can wear flip flops, but I am on immunosuppresant drugs and sometimes washing my feet is not enough.

 

Time to Heal 

It would be ideal if I could sit here with my feet up and not move, but that is unrealistic.  Not only because I have responsibilities, but getting up and moving around helps my attitude, even when painful.  My experience has been that healing is more painful that the infection, but if I let pain keep me down all the time, I wouldn’t have moved for the last twenty years.

 

When something is painful, I classify pain as a type, and base my execution of activity on precautions and adaptation needed.    I don’t have a set classification scale, because it has changed over the years because every now and then I get a type of pain I have never experienced that requires my getting use to it before classifying it, but here’s an exapmle of the types of pain classification I use:

 

1.  None.  Haven’t experienced this one more than a minute or two at a time.  I equate “none” to unstable synthetic elements that have half lives that range from a few milliseconds up to a year.  Short lived, but does exists.

 

2.  Background Pain.  Present, but hums in the background with little interference in daily activities that are not limited to occasional a three second “pain face”.  Yes, it hurts but I can tune it out.

 

3.  Manageable.  Pain that requires pain medication to function.  Funtion-ability returns once the meds kick in and returns pain to status of background pain.  Rarely does pain at this level return to “None”, because the medication is strong enough to take the edge off, not dope me up.

 

4.  Ouch.  Needs pain medication and rest.  Pain medication levels required to knock the pain down to none and rest is required until activity can resume at a back ground pain level.  This usually takes a day and a half.

 

4.5  Holy Ouch.  Infection or injury needs to be checked by a doctor and treated with antibiotics.  Possible request for stronger pain meds.  I made it half a point higher because there is a fine line between ouch and Holy Ouch.

 

5. Level 5.

 

Pain is so high at this level, it requires a name in bold font, a picture and no less than a morphine drip.  Whatever is going on requires a trip the the doctor or  emergency room, that usually results in hospitalization.  With a Level 5, I would be in less pain had I run naked into a cactus.

 

Level 5 has become rare for me because of my ability to prevent injury, or early detection of infection.

 

 

Current Condition: Ouch.

The degree of this pain is mostly tolerable, but because of the location, I must rest more than I normally would.  It’s much easier to guard a hand than the bottom of my foot.  So today, I will spend it resting with my foot elevated.  This means when I do walk today,  I will walk a little slow.  Every now and then I will make a face, but other than my foot, I feel great, so it makes this workable.  And since resting all morning, I feel better.  I know that more rest today will result in faster healing because the skin the bottom of my foot will not be disturbed that much.

 

Tomorrow, I have a doctor’s appointment with the rheumatologist who was concerned about my ability to be able to shave.  Her mind is in the right place.  Had I read my chart from a doctor’s perspective and never met me,  I would not have expected someone so active to bounce into my exam room.

 

Helpful Healing Practices. 

Times like these when just one variable can turn tip a situation into a full blown hospital stay, I pay attention to things I can change, like diet.  I stay away from junk food.  My diet will consist of healing foods high in protein.  I will stay away from processed foods and drink lots of water.  I know what foods increase my chance of swelling and slow healing through experience.  Everyone’s body is different.

 

There is no secret to managing a chronic illness and living longer with one.   I am not a doctor, and I can only share with you what has worked for me.  Being a vegetarian is not one of them.  Without animal protein, my skin breaks down.  Soy protein in things like tofu or shakes increases my inflammation.  Sometimes it’s luck.   Most of it is as healthy a diet as possible, exercise and outstanding access to the healthcare I need with no financial barriers provided by The Veteran’s Administration.  I have to fight for things at times and even kick down a few doors, but because the VA system is a socialized one, it is not limited when I advocate for myself.

 

Pep Talk.

To fellow patients: don’t give up.  We have to fight for treatment.  Yes, it sucks but complaining will not solve this.  We need to get the information to the person who is blocking us from getting the treatment they need.  It’s hard not to make it personal.  I have a lot of practice loosing my cool.  It took me years to work from a position of, “This person does not have the information he/she needs.  It’s up to me to get it to them.  And I have to be patient and persistent.”  I spare no use of foul language at times talking to myself about this, and yes I consider that a coping mechanism.

 

 

Chronic illnesses are not always the cause of death.  Sometimes it’s financial resources.  

One reason I shout about healthcare reform and politics, is because I know that I would be dead had I not had the access to healthcare I do.  I know that many other patients with scleroderma have died because their insurance would not approve the best possible treatment, only the least expensive.  And it’s not just scleroderma patients.  I’ve read about Lupus, sarcoidosis, MCTD and too many diseases to name here who have died because of financial barriers.

 

So, if anyone needs me today, I’m relaxing and watching some TV with my feet up.  Have a great day!

 

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Pain, Scleroderma and Activity

This has to be a quick one today, I have an infusion.

Last night, I had a great Krav Maga class.  I felt very good, but I forget sometimes, that I maintain a regular level of pain.  We’ve all been at the doctor’s office and asked to rate our pain.  My reply is usually, ” 2, but nothing out of the ordinary.”

I don’t quite understand the whole pain scale thing.  I can maintain a conversation while  tears pour out of my eyes.  It may be a learned response or capability because pain is such a part of my life.  I still “mope” about it sometimes and I still have days where I am too angry about my hands to do anything but lay on the couch.

That I am able to do things like yoga and Krav Maga may be rare, but I talk about it because it can be done.  My hands hurt constantly.  There are days the pain is mild and days the pain is worthy of a few choice words and some Vicodin.  I don’t share this with people in my day to day life because it’s not that it’s a non-issue, it’s that I have accepted this as part of stuff that just “is”.  It’s going to exist no matter how much I talk about it.  It’s not going away.  I want it to, but it’s not.  And yes, I ignore suggestion to use things like Dragon Speak.  It’s a great program, but it messes with my thinking.  Probably my own rational form of denial to make my life easier, but I never claim perfection in dealing with this stuff.  I just post what works for me and hope that it helps someone else, in some way, of makes a reader laugh.

I’ll try to be brief with my point, and I hope you will ask questions if I am unclear or if I may have tried something I haven’t mentioned, please ask.  My point is, I’m in pain.  I feel better when I move.  I have found a way to move with my pain, but focus on my activity.  The pain comes up, but in my mind I ask myself, “Is this pain present because I am doing something new that is harmful? Or, is it my normal?”  If it’s my normal, I have my own way of focusing on the task.  If it’s there because I am doing something that creates damage or harms me, even though it may be a regular non-painful task for someone else, I find my own way to complete the task or stop doing it and ask for help.  When I do activities like yoga and Krav Maga, I work with people who are trained to show me ways to adapt.  Ways that I can do an activity and achieve an objective without hurting myself.

So, if you look at your hands in the mirror and find yourself surprised by how messed up they look, like I do every day; don’t forget to finish that thought with, “I’m still here and I can still do things.”  Everyone’s experience with loss is different.  Where I am was not an easy place to get to.  I am fortunate enough to have great mental health care from the Veteran’s Healthcare system.  I hope someday everyone will have access to the great healthcare that I do.  I write because I want people to know it exists.  It was an uphill battle for me to get it and I want others to get it without the fight.  Access to healthcare is part of the big picture of surviving the chronic illness fight.  Staying active is a personal fight but it can be done.

Okay, I hope that made some sense.  I need to get going.  I want to explain more, but this will take some time and editing so please continue the conversation with some questions or comments.  Staying active while in pain isn’t easy.  pain meds help, but we can’t be on them all the time and at some point I accepted that being in pain is just a part of my life.  If you have so something that helps you “live with your pain”, please leave it in the comment section.  And if you would like to tell me that this was not helpful, I want to know that too.  Thanks for reading.