I’m still reeling from Friday. The thought of starting all over again with a new doctor, and trying to find a good one that’s close to us and in network is overwhelming at the moment. I’m really glad I’ve got at least six weeks before David has to see a rheumatologist for his regular checkup. Unless he flares. Then I’m in trouble.

So here’s my thought for the day.

I am not a psycho just because I take clonazepam. Clonazepam, or klonopin if you get the name brand, is always listed as one of the medications crazy people are taking in movies and on television shows. Next time you’re watching Law & Order or a medical drama, and they’re dealing with a psycho killer, listen to the medications the psycho is taking. Clonazepam is always listed.

I take clonazepam for my TMJ Disorder. It was prescribed by my specialist, who has DDS not MD after his name. He told me it would help me get a deeper sleep and clench my jaw less. I take a small dose, and it helps a lot.

Klonopin is also used as an anxiety medication and seizure medication. Every time I see a new doctor and list my current medications, I’m quick to tell the doctor or nurse that I DO NOT have seizures. (And I’m not a killer.)

I think people are a little too quick on the draw when it comes to medications that affect the brain. If you mention Wellbutrin or Prozac, they think you must spend hours and hours crying or you’ve held razor blades to wrists. They don’t understand that depression is different for some people, and sometimes medications have alternate uses as well. Stop stereotyping!

Consequently, tomorrow I’ll have to write about how I am a perfect stereotype.

Love,
A Young Wife

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Brother #3 and I went to Philadelphia today. It was a fun day. Here we are at Independence Hall.

His main goal on this trip was to eat a real Philly Cheesesteak. I was happy to oblige.

I squished mine down as much as I could, and was able to eat about half of it before my jaw gave out.

Speaking of my jaw, I met with my new TMJ Disorder specialist this week. I had hoped to see my specialist in Dallas whenever we went home. Unfortunately, he will be out of town the week we’re there. My Dallas specialist was able to recommend a colleague of his in Pennsylvania.

I wore a hole in my night guard, so I had to be seen soon. At least I didn’t bit this one in two, right? This specialist is an hour and half away, but he’s one of the few that doesn’t think surgery is the answer, so it’s worth the drive.

As stable as I am, I really hate to complain. I don’t even consider myself to be in pain. I feel some discomfort, but compared to how I was two years ago, I feel incredible.

The doctor did a thorough exam, and when he touched my occipital lobes (at the base of the skull) I winced, and told him it hurts to wear sunglasses. He said he was glad I was doing so well, but he thought he could adjust the night guard so I don’t even have that discomfort.

I’m so thankful for these amazing doctors!

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We survived our second week in New Jersey. Except we weren’t in New Jersey the whole time.

Monday when David came home from work, he said, “I put in a request to go to a training conference in Virginia. It’s Wednesday through Friday. They’ll never approve it on such short notice.”

Tuesday afternoon, David calls me and says, “Pack my bag. I’m leaving in three hours.”

Seeing as we live so close to such a rough part of town, and I don’t know a single person here in New Jersey, I didn’t feel comfortable staying by myself for three days.

I tried to fly home to Dallas. I learned that flying with a pet is very difficult. It cannot be done on short notice. Henry would have to have seen a vet within 10 days of flying, and it seems that most flights (and all of the flights available to me) don’t even accept carriers over 28 inches long. Henry needs a carrier between 42-48 inches long. So I couldn’t take him with me.

When we were sneaking Henry into the hotel, I had tried to board him at Petsmart. We then discovered that our vet in Dallas didn’t tell us that Henry was way overdue for a Bordatella shot. Petsmart suggested a vet that also boards dogs. I called them, and they said that Henry would need to get the Bordatella shot two weeks before being boarded. So I couldn’t board Henry here and fly home.

I ended up driving to Virginia with Henry. David left on such short notice that he was making his own travel arrangements anyway, so we were able to stay in a pet friendly hotel.

If you follow me on Twitter, you might have seen me complaining about a domestic disturbance our neighbors were having. It was neighbors at our hotel. This lady was screaming obscenities and kicking her husband (or perhaps boyfriend) out because she missed her hair appointment. This was happening while I was in the hotel by myself and David was at the conference. So much for staying in a safer place. After twenty minutes, the guy left.

Later that afternoon he came back and the screaming started again. I called the front desk to report the disturbance and was told, “Oh, room 207? That’s a nice lady. She’s just arguing with her husband. They won’t bother you. Oh, and I’m not going to charge you the pet fees. I didn’t see your dog. It’s okay.”

Wow. Basically, they just didn’t want me to call the cops. I would have, had the fighting next door not stopped while I was on the phone with the front desk. It made me so mad. I mean, what if that fight had escalated? It was pretty bad. The man could have come back with a weapon to kill that crazy lady. I was trying to be a responsible citizen.

Anyway, David loved his training. He was very happy the company sent him. I got a good bit of reading done in the hotel. Virginia was very pretty. The weather was great, and we went to Bull Run one night. David and I had a really nice time on the drive back. We got in a lot of talking, and we had our Garmin, so we weren’t stressing about getting lost.

David is very happy in his new job. We should be finished unpacking this week, barring any unforeseen trips.

David’s arthritis has remained remarkably stable, praise God. After the crazy week we had, he wasn’t up to visiting church this Sunday. We were so looking forward to worshiping with other believers and meeting new friends, but we’ll just have to wait until next week.

The only major concern I have right now about David is his diet. David can’t have gluten, and he’s had gluten at least twice now while eating lunch with co-workers. Many people have dietary restrictions. What’s the big deal in saying, “I can’t eat pizza. I’ll just order something else.”

As for me, the appliance I wear at night for my TMJ Disorder is not right. I need to see my specialist back in Dallas for an adjustment, but that’s probably not going to happen any time soon. I’ve had a lot more jaw pain this week, and even some headaches. My gums are bleeding every morning when I wake up. Maybe when we find a chiropractor, he’ll be able to help some.

Thanks for keeping us in your prayers!

Love,
A Young Wife

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More questions and answers. Thank you, Karen, for asking so many great questions!

Can you ever drink to much Diet Coke? No. Never. If you’re worried the caffeine will keep you awake at night, well that’s what God made Caffeine Free Diet Coke for. It’s in the gold can.

Why was David diagnosed with Psoriatic Arthritis instead of say Rheumatoid Arthritis? Was he misdiagnosed at first? David has seen two rheumatologists and they both agree that David has Psoriatic Arthritis. In high school and college David experienced back pain, and he was always given stretches and muscle relaxers. The doctors just assumed the pain was from playing sports.

So I guess you could say that he was misdiagnosed, but I’ve never really thought of it that way. As soon as a doctor took an x-ray of his back and did blood work they sent him to a rheumatologist. The other doctors were just being minimally invasive and David seemed so healthy. They really had no reason to think the back pain was arthritis unless they were looking back through his chart seeing how often David was complaining of back pain, but even then, they still probably would have thought it was a torn ligament or something more common.

David has psoriasis on his scalp, and he did have patches of psoriasis on his knees once just before his worst flare up ever. After the blood work, x-rays and bone scan were done, the presence of Psoriasis, and the absence of the rheumatoid factor is what led doctors to diagnose David with Psoriatic Arthritis, although I have learned that David could develop rheumatoid arthritis.

Where does David have Psoriatic Arthritis? In every joint in his body, except his shoulders. His ribs and collar bone are also affected. The arthritis is most severe in David’s spine.

When does New Moon come out on DVD? Saturday, March 20. When Twilight came out on DVD, I sent David to Wal-Mart at midnight thinking there would be hoards of screaming girls just like the movie premiere and that stores would sell out quickly. They didn’t. In fact, Wal-Mart hadn’t even put the Blu-Rays out yet. So David went back a few hours later and then watched it with me. What a great husband!

Does your TMJ Disorder cause pain anywhere besides your jaw? Yes. Some TMJD sufferers get migranes. Thankfully, I do not. I do experience pain in my occipital lobe (the base of the skull just above the neck). Occasionally the jaw pain makes it feel as if I have an ear infection. Sometimes the pain in my jaw shoots down into my neck, but praise God, my jaw really is so much better than it was a few years ago. My TMJD specialist and my chiropractor have worked miracles on my jaw.

Are you guys moving? It depends on where David’s next job takes us. We would love to stay right here in Dallas with our family and friends, but Arizona would be a better climate for David’s joints, and since David has been out of work for two and a half months, he’d take a job pretty much anywhere at this point. He is actually interviewing in New Jersey today, so we’ll see where the Lord leads us.

What’s the best thing for David when he flares? David soaks in a hot bath with epsom salts every day. When he flares, he takes additional hot baths. Sometimes he will use a heating pad or Therma Heat patches. Often when he flares the doctor will give him an injection of arthritis medication directly into his back. There’s really not a whole lot we can do except wait it out. David has tried acupuncture, but it is a bit expensive, although it does provide considerable relief.

What helps your jaw when it’s hurting? Rest and relaxation. I try to eat soft foods like mashed potatoes and yogurt when my jaw hurts, so that my jaw can rest. Relaxation through exercise, massage therapy, playing the piano, etc. helps quite a bit. When my jaw pain was very bad a few years ago, I would sometimes drink hot beverages to relax my muscles. I wish you could have seen me with my mouth full of Chai Tea Latte leaning to one side to hold the hot liquid where I wanted it.

Why don’t you have a smart phone? First, money. It’s more expensive than my low tech phone. Second, the internet is so widely available, I really don’t need to have it on my phone. I can check email practically every where I go, and if I happen to be somewhere without internet access and I desperately need to blog or task a satelliete, well, that’s what David’s for.

Thanks for all the great questions and keep them coming!

Love,
A Young Wife

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Here’s a quick update on our status.

David has had lots of interviews, and one very promising interview yesterday with a company that is located very near my part time job. If he got this particular job, it would mean we could carpool sometimes!

David saw the rheumatologist yesterday. I’ve worked quite a bit more than usual at my part time job lately, because the receptionist has been out sick. So, yesterday was the first time David went to the rheumy without me.

David has had a lot of pain in his ribs and neck lately. The doctor said that even though the ribs aren’t joints, it is psoriatic arthritis in his ribs. The rheumatologist said he is seeing improvement in David’s Psoriatic Arthritis, just as we are, and in fact, he recommended that David contact Humira and ask them if they will approve David for injections every ten days instead of every fourteen. I imagine this won’t be an issue since they simply ship us whatever the doctor prescribes.

And well, apparently many people have David on their minds today. My boss asked me a lot of questions about David’s arthritis, and then called me from his house to ask how to spell “Psoriatic”. Then my doctor’s office, my TMJD specialist, called to say that there would be a special on the Channel 11 News tonight about new breakthroughs in arthritis. They’ve never called to tell me to watch a show on TMJ Disorder.

It is sweet that people are thinking about him. I really appreciate all the care and concern. But I had to call my mommy and ask her if she’d make her special Martha Washington candy that she only makes at Christmas for me for my birthday in January. She said yes. And she asked how I was.

Love,
A Young Wife

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I’ve written about my TMJ Disorder several times before. You can read about it here and here, here and here. I thought I’d write a little more about it for Invisible Illness Awareness Week. Check out the website if you haven’t already. There’s lots of great articles and good information. Oh, and you can get the podcasts of the seminars!

TMJ Disorder is a very broad diagnosis. Dr. Bender has actually diagnosed me more specifically with a sleep disorder and facial pain and some other medical jargon that I can’t remember now. For more information about TMJ Disorder, check out The TMJ Association website.

I’ve noticed recently that it’s becoming harder and harder to whistle. It’s not such a horrible thing. I don’t need to whistle. It’s just an example of how my jaw and mouth isn’t working properly. Also, I’ve been having trouble enunciating the past week or so. I’m sure it’s just because David has been in such bad shape, and I’m stressed. I just don’t want anyone to think I’m slurring my words ’cause I’m drunk.

Last week the chiropractor asked me how I was doing, and I asked him to fix my jaw so I could eat until I’m full instead of eating until my jaw gets tired. He did a big, painful adjustment on my jaw. It seemed to help.

I dread seeing the dentist next week. It’s very hard to keep my mouth open for a cleaning, let alone fillings. I had a good dentist who understood how painful everything is for me. I had to have four fillings (My last set of molars never came in all the way. They’re hard to reach and clean since I can’t open my mouth very wide.) last year, and so he split the work up into multiple visits so that I wouldn’t have to hold my mouth open for too long.

With our current health insurance, we do not get to select our own dentist. The new dentist actually asked me, “Why do you think you have TMJ Disorder?” After I explained my situation to him, he tried to sell me orthodonics to correct my open bite and “infantile swallow” which he said would cure me. I explained that I’ve had two sets of braces, a bite guard, multiple retainers and a recent consultation with an orthodonist who confirmed that it was not in fact anything orthodonically causing my TMJ Disorder.

I’ve talked a little about this before, but the dentist and hygienist always want to see my night guard and tell me what I should be doing. Sometimes they’ve given me advice contrary to what Dr. Bender says. It’s always annoying when people who have no idea what they’re talking about try to give you advice.

Which brings me to another topic about chronic invisible illnesses. Ask anyone with a chronic or invisible illness and they’ll tell you: We get LOTS of advice. Everyone sends you emails with a “cure” for your disease. First, it’s impossible to try every single remedy we hear about. Second, I’m not interested in your multi-level marketing scheme.

What helps me the most is when people listen and then say they’ll pray for David and me. Some advice is helpful. Like my mother-in-law telling me to call the pharmacy and ask them to print out a list of all the medication we’ve purchased this year for our medical expenses when we were filling out the financial assistance paperwork. I had no idea they would do that. It was an enormous help. Or friends who’ve suggested great vegetarian recipes to help David limit his animal protein intake. That’s advice I can actually use.

Honestly, I don’t need any information on cures and remedies. I’ve already done more research than you have, plus we talk to the doctors at least every eight weeks, and we belong to several groups that would certainly let us know if there was a cure or even just a new drug. I know people just want to help. I appreciate their efforts and we’re certainly not mad at anyone. But it’s getting to be the family joke that so and so called with the magical cure. And then the response is a quote from the movie Horton Hears a Who we learned from my sister-in-law, Kristy.

And in my world, everyone’s a pony that eats rainbows and poops butterflies!

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Check out this great post about balance and chronic illness.

September 14-20 is National Invisible Chronic Illness Awareness Week. I’ll be blogging about it that week. Here’s a preview post.

The worst part about invisible illness, for me anyway, is that people forget. If you have a broken foot, people see the cast and remember. No one knows I have TMJ Disorder just by looking at me. When I’m eating in public, I feel like I should wear a sign: My momma raised me right. I’m trying to chew with my mouth closed but my jaw doesn’t work properly.

Chewing gum is absolutely forbidden when you have jaw trouble. Yet, even close family members still offer me gum, and I’ve had TMJ Disorder for five years.

My husband, David, has severe Psoriatic Arthritis. Folks look at him and see a healthy young man. People that know David well forget how bad he’s hurting because he doesn’t use a cane or a wheel chair.

One example in particular sticks out in my mind of how easily we forget about people with invisible illness. David and I both see several of the same doctors. One day, I saw one of our mutual doctors who had just seen David a few moments before. He was asking me how my day had been, and I mentioned my mother, mother-in-law, and I had trimmed the trees in my front yard. The doctor said, “Hey, be careful. David’s going to be upset you’re doing his job!”

Oh, how quickly we forget.

Even I forget sometimes and ask David to move a piece of furniture. Or, someone will invite us to do something like attend a Mavericks game, and I accept the invitation, only to realize later that there’s no way my husband can handle that much walking, let alone sitting in a hard metal chair for hours.

I always feel so guilty when I forget. David is bedridden at times. How could I forget he has a chronic illness like arthritis? How could I suggest he wakeboard a few months after a weekend of having to dress him?

People forget. God does not.

Isaiah 44:21 (NIV)
“Remember these things, O Jacob, for you are my servant, O Israel. I have made you, you are my servant; O Israel, I will not forget you.

Isaiah 49:15 (NIV)
“Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!

We are so blessed that God is not only omniscient, but God actually cares about his children’s troubles.

It’s okay if you forget that I have TMJ Disorder or David has arthritis. But please, try to be kind and considerate to everyone. You never know what they’re going through or what invisible illness they may have.

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David uses a combination of traditional and alternative medicine to treat his arthritis. He responds well to massage therapy and chiropractic treatment. Supplements have not given him any relief so far.

There are a lot of all natural products out there that claim to work wonders. But herbal remedies have side effects just like drugs. You should always check with your doctor and pharmacist to make sure these “natural” products, supplements and vitamins aren’t interfering with other medications or aggravating your blood pressure or something.

Alternative medicine is great. Why pop pills if you don’t have to? If I’m sick and I can get over it without taking an anti-biotic, I absolutely will. The more you can let your body take care of itself, the better, I think. Vitamins don’t seem to help me at all, but I’ve noticed that eating yogurt a few times a week keeps me much healthier.

It’s common sense, but I think that a healthy diet with a wide variety of foods and exercise will cure and prevent a lot of our nation’s top illnesses such as heart disease and diabetes. However, some illnesses are genetic and they are not helped by any diet or exercise. Like David’s arthritis.

I’m also a proponent of “minimally invasive”. You know, there are three ways to treat, X and Y is the most minimally invasive treatment. I’ll do Y first and see if that works. When I had severe jaw pain, I refused to see an oral surgeon, the specialist everyone kept recommending. Because he was an oral surgeon, he was going to tell me I needed surgery. And I wasn’t willing to have surgery.

By the way, why is it that insurance companies will cover oral surgery for TMJ Disorder, but not the treatment I get where Dr. Bender just makes adjustments to the night guard I wear at night? Surgery is a lot more expensive. I think it’s because people are uneducated.

Which leads me to my last point. Education. Get lots of education from several different sources and don’t believe everything you read or hear. You should even take this blog post with a grain of salt. I’m not a doctor. Yogurt could be killing me slowly.

Hi, I’m A Young Wife. I’m a fan of alternative medicine. I’m also a fan of traditional medicine. How about you? Do you swear by orange juice for colds? Baking soda baths for chiggers? Do you see a chiropractor or acupuncturist?

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Okay, before I type another post about myself, let me give you a quick update on David’s arthritis. He’s been feeling a little better now that we’ve had a break from all the rain and temperatures are reaching 90+ degrees every day. Nothing new to report on the Humira.

Our house has been on the market since late March. We’re trying really hard to move closer to our family and church so we’ll have easier access to assistance when David flares up. Also, our current house is a two story, and stairs are really tough on David. Our realtor hosted an Open House today, so maybe we’ll get an offer this week.

Thank you all so much for your prayers and encouraging comments.

Although David is the one with the chronic illness, I have a chronic issue with my jaw. I have Tepromandibular Joint Disorder or TMJ Disorder.

It started when I was in college. My jaw would just lock up and I wouldn’t be able to move my mouth. It started happening more and more frequently and for greater lengths of time. Then I started having a little pain. I went to my dentist who made me a night guard.

I got worse. The pain became so bad that it was difficult to eat things like sandwiches, pizza, steak, apples, carrots and anything you have to bite in to. My parents’ health insurance did not cover any treatment of TMJ Disorder, so every doctor visit and even the night guard they paid for out of pocket.

It was really embarrassing. At work I’d be talking with someone and my mouth would spasm. I couldn’t sing in church. I remember one time the pain was so bad I was convinced I had an ear infection. My family doctor looked at my ears and said they were fine. The pain was just from my jaw.

He gave me muscle relaxers which I started taking every weekend. They would knock me out, and I’d sleep for twelve or more hours at a time. It helped enough that I was able to make it through the work and school week.

My parents and I were not interested in traditional TMJ Disorder specialists. Most of them would just have told me to have surgery. And after my wisdom teeth ordeal, there was no way I was going to have surgery!

Eventually a friend told me about a physical therapist who had helped her with another problem. My parents paid for me to start seeing her, and she was incredible. She basically cured me.

Until things went crazy with wedding planning. I could do a whole series of posts on everything that went on during the planning of our wedding. I had vendors go out of business. The dress shop ordered the wrong size dress and tried to tell me I had gained weight. My maid of honor didn’t even come to my wedding.

My TMJ Disorder came back with a vengance. I started seeing the therapist again, and she got me to a tolerable level, but this time, I was not cured.

After David and I got married, I had a different insurance company that covered part of my treatment. I started seeing a specialist, Dr. Bender. He has helped me so much, without doing surgery or even giving me an injection.

Dr. Bender makes adjustments to my night guard every so often. As my jaw gets better, it can move more, so he has to add to or grind down the night guard in spots.

The best thing Dr. Bender has done is educate me. I have learned so much from him, and knowledge really is power. I learned that stress is a huge factor in how much my jaw bothers me. When David has a flare up, a few days later, so do I. If I’m feeling stressed during the day, I’ve learned that I can play the piano or exercise to relieve the stress a little. I learned that during the night, I’m clenching and grinding much harder than I ever could while awake.

And I proved that fact. I have broken not one but two night guards during my sleep. I literally bit them in half.

I thank God for Dr. Bender. Today, I can eat pretty much whatever I want. Most Sundays I can sing in church, although if you hear me sqwak, it’s my jaw locking or spasming.

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