I am so excited to be a guest blogger on Young Wife’s blog! Thank you so much for the invitation! This is my first guest post, so forgive me if I’m a little green!

I “met” Ashley via blogging. Her husband and I have something in common: we both live with chronic illness. I love reading her blog from a caretaker’s point of view, because it really helps me to understand my husband.

I have a neuromuscular disease called myasthenia gravis, or MG. The kind of MG I have is quite severe, and affects less than 10 people per million. It is called Musk+ MG or MMG. Some of the symptoms include trouble breathing, speaking, swallowing, and problems with overall muscle weakness. I also have trouble with my eyes. I get double vision a lot.

The scariest thing about MG is the unpredictability. I can be okay one minute, and literally be in crisis the next. Something can set off the MG, and I’ll immediately have trouble breathing. That in turn affects everything else and it’s a downward spiral from there. I also have a trach.

Being married has been one of the biggest blessings in my life. My husband and I were married for only 6 weeks when I went into the hospital for an MRI under sedation. I quit breathing, had to be emergently intubated, and had to stay in the hospital on and off (mostly on) for 3 months.

When I got home, I had to sleep in a hospital bed in our living room. My husband slept on the couch for SIX MONTHS so he could take care of me during the night. I had a breathing machine to help me stay breathing at night, and I frequently needed suction to keep my trach clear. I was too weak to do it myself at the time, so Doug would get up and take care of me, and then go back to sleep on the couch. I had a bag of jingle bells I would ring to wake him up.

Many men would have simply felt like they had not signed up for all of this, and left. My husband is a rare breed. He is amazing. God gave him every talent he would ever need to take care of me.

Being married with a chronic illness can be very trying, however. Here are some tips that have helped Doug and me in our ten year marriage (and illness!)

Communicate, communicate, communicate. Make sure you both feel able to express emotion without penalty. If you need to cry, cry. If you need to vent, vent. Be clear about what you’re trying to express. One thing that has helped Doug and me tremendously is that we repeat back what we heard the other person say. You would be amazed at how different those two statements can be!

For example, Doug might say, “Man, I didn’t sleep very good last night. I’m tired.” And I might HEAR, “You kept me up all night coughing and needing suction and I resent you for it.” See what I mean? He really, truly just could have been making a statement. Do. Not. Assume.

Another thing that helps is to have a support system in place. For the chronically ill individual, it is important to have people who REALLY understand you. My husband understands probably more than anyone because he is with me all the time, and has seen every aspect of my disease.

Even he, however, can’t know exactly how I feel, because he doesn’t have the limitations I do. Don’t expect your spouse to understand exactly what you’re going through. They can’t. And it’s not fair to expect them to. Find support groups locally, if you’re too ill to go to one, find something online.

I cannot tell you what a Godsend the internet has become for me since I have been diagnosed. I have met so many godly men and women with chronic illnesses. Some have supportive spouses and families, and sadly, some do not.

Encourage your main caregiver (especially if it is your spouse) to spend some time away from you! I know it may sound strange, but someone else can fill in for them for a while. That time is so important. If your caregiver is like my husband, he won’t want to take it. But we have to remember that they are still normal, healthy, “regular” people, and they need an outlet as well.

Some of the best advice I’ve ever gotten is this: you will never get all of your needs met by one person. You need friends. You need family support. You need the support of people like you that are chronically ill, so you can talk to them about the ins and outs of your experience.

I know beyond a shadow of a doubt that my husband loves me. Not just because he takes care of me, either. To show how much I love him in return, I try not to allow him, or force him, to take 100% responsibility for things I can’t do. I know I used to rely on him more than I should have, and it really started taking its toll.

And by all means, talk to a pastor or counselor. Whether you became ill before or after you got married, the stress chronic illness puts on a marriage is immense. You need an outlet. You need to grieve. And that process is different for everyone. Sometimes a pastor or counselor can kind of hold up a reflection of you and your spouse, and help you to see things that may have been hidden before.

Thanks again, Ashley for this wonderful opportunity! It has been an honor to be a guest writer on your blog. I thank God our paths have crossed, and pray that you and David continue to work together to fight his illness as Doug and I fight mine. God Bless!

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That is not why I go with David to all of his doctors’ appointments. We would just call the pharmacist if David was confused about the dosage of his medication.

The reason I go with him is because David tends to put on a happy face in front of other people. I’ve lost count of the number of people who’ve told me, “You’d never know David had arthritis.” He doesn’t complain. He minimizes his symptoms, even with his doctors.

A doctor might say, “Where are you hurting? How bad is the pain?”

David would respond with, “My back and neck. It’s pretty bad.”

The doctor might ask, “Are you able to work?” and of course David would say, “Yes.”

I would then interject with, “Some Sundays we can’t go to church because it hurts too much to sit through a thirty minute sermon,” or “All of his joints hurt. His ribs and collar bone hurt, too. We can’t go to the movies.”

Then there was the incident at the lab this week. David went for his lab work Tuesday. We completely forgot that he was supposed to be fasting. It wasn’t required for his lab work in Texas, and we’re not sure if it’s required now because the new rheumatologist ordered different tests, or if he just prefers his patients to be fasting when they’re tested. So David had to go back Wednesday morning on his way to work. We both felt like I didn’t need to be there.

Never again. I’m going with David every time he so much as picks up a script from now on. After they took several vials of blood, they asked David for a urine sample. After he filled the cup, he started dry heaving in the bathroom.

He didn’t tell the staff. He decided he didn’t have a fever, and he was okay to go to work. He was perfectly fine the rest of the day, but I think the nurse should have at least made a note of the incident. It was just too weird, especially since we know it’s not that David is squeamish about lab work. He does this every eight weeks.

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Psoriatic arthritis is a form of arthritis that affects some people who have psoriasis, a serious skin condition. Most people develop psoriasis first and are later diagnosed with psoriatic arthritis, but arthritis can sometimes develop before skin lesions appear.

It’s interesting to me that on WebMD’s Psoriatic Arthritis Health Center they have tabs for treatment and symptoms of course, but also one for “Emotional Toll”.

There is no cure for Psoriatic Arthritis. Symptoms include inflammation and joint pain. If you asked David what his symptoms were, he’d just say pain. Lots of pain. For David, the psoriasis is extremely mild. He didn’t even know he had psoriasis until he was diagnosed with Psoriatic Arthritis. We just thought he had dandruff on his scalp. Occasionally he’d get patches in his beard if he let it grow too thick.

For many people, the psoriasis is extremely painful. It’s like having another disease on top of the arthritis. Some people experience patches of raw or bleeding skin. So, we are very grateful that David hasn’t had to deal with anything like that. Once, right before The Weekend from H*** David had patches of psoriasis on his knees, but it was very mild.

The exact cause of Psoriatic Arthitis is still unknown, according to the Arthritis Foundation, but genetics are strongly suspected. It is believed that environmental factors also contribute to the disease.

If you asked me what Psoriatic Arthritis is, I’d say it’s a terrible disease that has changed my life. It’s debilitating and frustrating and taking some Aleve won’t cure it. That’s one of the biggest misconceptions. That David has arthritis like your Grandma got arthritis in her fingers when she was 80 and couldn’t knit any more until the doctor gave her Celebrex and now she’s doing great. It’s not the same kind of arthritis at all.

Psoriatic Arthritis is what drove me to blog and drives me to drink (Diet Coke).

For more information on Psoriatic Arthritis, check out The Arthritis Foundation’s Website.

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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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1. He doesn’t mind watching chick flicks with me, and he even likes watching “The Notebook”.

2. He asks if there’s anything he needs to pick up on his way home from work.

3. He is ALWAYS willing to order takeout if I’ve had a bad day. Actually, he’d eat out every meal if I let him, but it is so nice knowing he’s just as happy with pizza as he is with a gourmet meal.

4. He knows how to do so much around the house. With his arthritis, there are a lot of big projects he can no longer do, but when I can’t get my garage door to go down, one phone call to David and he’s got it figured out. It’s always amazing to me how he knows how to shut off the water and replace brake lights.

5. He takes care of me when I’m sick. I used to get food poisoning all the time. (Seriously, don’t eat anything in an office kitchen. People are so nasty.) David would take off work so he could bring me Sprite and crackers.

6. He likes me better without makeup.

7. He prefers me to wear my hair in a ponytail.

8. He saw “Twilight” and “New Moon” with me. And he went out in the middle of the night to buy “Twilight” on Blu-Ray because I thought the stores would sell out quickly. They didn’t.

9. He’s so stinkin’ tall.

10. He has brown hair and a red beard.

11. Right after high school, he wanted to grow a beard. I whined and griped about how much I hated it. After a few weeks, he trimmed it to a goatee, and I love it. Now he wants to get rid of it, but I beg him not to.

12. He makes me laugh.

13. His sense of humor. He brought the best gag gift to our extended family’s gag gift exchange this year. He screwed a CPU fan into a pair of underwear. Briefs with a built in fart fan.

14. Free programming for my blog!

That’s the giant inflatable gorilla David put in front of my house on Valentine’s Day in 2003.

I love being married. Marriage is a blessing from God. However, not everyone is married, and there are some advantages to being single.

Fourteen Reasons Why It’s Great to be a Single Woman

1. You don’t have to watch Future Weapons unless you want to.

2. You don’t have to go to Circuit City or Fry’s for hours just to look around.

3. No one will steal your Diet Coke!

4. You won’t argue over Chinese or Italian for dinner.

5. You have more time to devote to missions, charity and church.

6. You don’t have to buy anyone anything for Valentine’s Day.

7. You don’t have to figure out what to buy the guy who has everything for Christmas or his birthday. (Are you sensing I have a problem with gifts for my husband?)

8. You can get a cat or a dog and give it the girlyest name ever.

9. You only have one schedule to check when you get invited to girls night or a book club.

10. No cooking or cleaning up after guys’ night.

11. Have you smelled a hairy man after he smokes a cigar?

12. The toilet seat is always down.

13. You don’t have to teach someone why wet towels do not go on the bed.

14. Your taxes are easier. You don’t have to ask “Where’s your W-2?” or “Did you enter our medical expenses in Turbo Tax?”

Happy Valentine’s Day!

Love,

A Young Wife

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It’s not the most romantic gesture, and it wasn’t expensive, but I could not have been more pleased. We lived in a third floor apartment. And I didn’t have to walk down those stairs over to the leasing office, move my car and walk all the way back up those three flights of stairs.

My husband loves me. He does stuff like that all the time. Stuff I don’t expect. Little things that help so much.

Oh, and one more thing. My husband loves me because he’s taking me to see New Moon in thirty minutes. Gotta run!

Love,
A Young Wife

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When David first started taking Hydrocodone, he’d wake up in the middle of the night wired. He’d then wake me up and say things like, “I love you. You’re such a wonderful wife. I don’t deserve you.”

And then I’d say, “Okay, I love you, too. You’re a good husband. Go back to sleep.”

So then he’d say, “No, I need to tell you. I love you. Hug me!”

And I’d hug him, and pat his back and say, “I’m really tired. Let’s talk in the morning.”

“No, no. I need to tell you how I feel. I can’t sleep. I love you so much.”

“Okay, honey. If you love me, let me go back to sleep!”

It was rough there for awhile. Now he just can’t fall asleep. He gets fidgety, and I’m so sleepy. Which is better, to be in pain or to have insomnia?

Got any good pain medicine stories? I’ve heard a few good ones from people that took pain medicine after surgery.

David also worries about getting addicted, which is why he doesn’t take nearly as much as the doctor prescribes. He waits until he has a flare up and the pain is out of control before he takes what the doctor prescribes.

I cannot wait until his arthritis is in remission.

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