This post is part of the RA Warrior Rheumatoid Arthritis Pain Management Blog Carnival. Click here to learn more from other rheumatology patients about pain management.

Do you have chronic pain? What helps you?

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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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We’re traveling to San Antonio for Thanksgiving for a vacation with David’s side of the family. We’re staying on the River Walk, so we will hopefully be able to do all sorts of fun things without too much walking. There’s an Imax theater and a mall very close to the hotel, so while our nieces and nephews enjoy Sea World, we can be enjoying more restful activities. Like room service.

And in the evenings, it’s game time! We love playing Chicken Foot, Cranium, Apples to Apples, and Nertz. We’re not allowed to play Monopoly anymore. Long story short, one ten hour game Christmas Eve ended with adults in tears.

Although I’m really looking forward to our trip, I’m very worried that David is going to flare while we’re traveling. I’m looking into renting a wheelchair, but I don’t know if David will go for it. Here’s what’s on my packing list (besides the ordinary stuff).

*Therma Heat – Those patches you stick to your skin that get warm. David can wear them underneath clothes while we’re outside the hotel.
*Heating Pad – For when we’re in the hotel.
*Epsom Salts – For David to soak with.
*All of David’s meds, doctor’s numbers, etc. David carries a card in his wallet listing his medications and dosages in case of an emergency.
*David’s cane.
*The names and numbers and pricing information of local masseuses. Since we have a Massage Envy membership, I’ll be looking for their San Antonio branches.
*Lots of Diet Coke (Oh, wait. That should go in the ordinary stuff column!)

Anything I’m forgetting? Any tips on traveling with a chronic illness? Has anyone rented a wheelchair before?

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Yesterday I worked at my little part time personal secretary job. David doesn’t usually call me when he’s at work. Yesterday, he called me on my direct line at work. I don’t think he has ever done that. He wanted to know what time I was leaving work to come get him. I also had a text and a voicemail from him on my cell when I left the office. He was having a really bad day. At first, I thought he was having a flare up.

No, no. Turns out, he forgot his meds the night before. Yup. Just one time.

As we drove home, David had the passenger seat all the way back. I was giving him grief, “Oh, I see how it is. You only call me when you need something! You can’t just call me to see how my day is going.” He laughed and told me to drive faster.

He was supposed to go to the chiropractor (thirty minutes from our house) and then to a prayer meeting and deacons’ meeting at church. I was scheduled to have dinner with a friend. We got home and David immediately started soaking in the hotest water our tub would produce and half a bag of Epsom salts. I told him I could cancel dinner and take him to the chiropractor. “No, no. Don’t cancel your dinner. Let’s leave now and you can still make it.”

So, I drove him to the chiropractor. We were both adjusted. David felt a smidgen better.

The chiropractor could not believe I’d had a massage two days prior. My shoulders are giving me a hard time. The massage therapist and the chiropractor agreed that just because I’ve been carrying a bigger purse does not mean I should carry my lunch and library books in the purse. Okay, okay. And sometimes I carry my laptop in my purse. I’ve switched back to my older, smaller purse. Anyway, back to David. As we drove back home, he called to let folks know he wouldn’t be at the deacons’ meeting and he scheduled a massage.

I dropped David off at the house, and flew twenty minutes across to the other side of town to meet my friend for dinner. I was fifteen minutes late. I hate being late. And for some unknown reason, I didn’t have her cell number programed into my phone so I couldn’t call her to let her know I was running late. But, she’s a very good friend, and her life is crazy too, so she completely understood. It was a fun, relaxing dinner, and totally worth running around town for.

I got home just as David was getting back from his massage. He said it was the worst massage he’d ever had. The room was freezing, and when he complained, the therapist gave him a thin blanket. Here’s the thing. (Oh, my gosh! I am turning into Monk!) Cold makes David’s arthritic joints feel worse. And when you’re being massaged, whatever the therapist is working on, your back or leg, isn’t covered by the blanket. Duh. I felt so bad for David. I’ll probably be calling that particular location’s manager later today.

I was pretty tired and ready to go to bed, but David needed to get some work done. I read a few chapters in my book, and then decided that if we were going to be up late, I might as well be productive, so I cleaned our master bath.

David’s feeling a lot better today. I don’t think he’ll forget to take his meds again any time soon.

Love,
A Young Wife

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Okay, I have totally been inspired by Lisa J. Copen’s new book, Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend. I highly encourage you to read it. Even I got some great ideas and tips!

So, here’s a list of things you can do specifically for David’s situation.

1. Play video games with him. It’s David’s favorite thing to do.
2. Invite him over to your house to play video games or come over to our house and play games with him. XBox Live is great, but actually sitting next to someone, sharing a bowl of popcorn is so much better.
3. If you’re like me and you don’t like video games, play board games or cards with David.
4. If you hear of something going on in our area that doesn’t involve walking or sitting for too long, tell him about it. It’s hard for us to find things we can do.
5. Swim with him. Swimming is the easiest exercise for his joints. Take him to your gym on a day pass. Then he can soak in the hot tub afterwards which eases the pain a little.
6. Send him a card to let him know you’re praying for him.
7. Wash and/or vacuum out his car.
8. This is really more for me, but on the days he goes to the doctor, we spend an hour or more in the car and about four hours in the doctor’s office. Bringing us a healthy dinner would be much appreciated.
9. Another one for me. If you have a great vegetarian recipe that even meat lovers like, send it to me. David is supposed to limit his animal protein consumption.
10. Pray for him every time the weather changes.
11. When David has a flare up, call him and ask if you can stop by and see him.
12. If you come to our house (and you feel comfortable doing this) ask David if you can use the back massager on him. David’s parents bought him this great massager that he likes, but it’s on the heavy side and I can’t use it on him for very long.
13. Ask David if you can trim our trees or do some other project around the house.
14. When we sell our house, help us move.
15. Buy him a giant bag of Epsom Salts. He soaks in a hot bath with Epsom Salts at least twice a day. We’re constantly running out.

Love,

A Young Wife

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