When my husband and I were engaged, my mother told me, “I don’t care whether or not you go for pre-marital counseling. Nothing can prepare you for marriage.” She was right, but not even my mother knew the challenges my husband and I would face in our marriage.

On July 8, we celebrated five years of marriage. Those five years have been dominated by health problems. It started off with my health. I had severe TMJ Disorder and a knee injury. Then in our second year of marriage, my husband, David, was diagnosed with Psoriatic Arthritis. Although he was being treated, he continued to get worse until our third year of marriage when he began experiencing flares that left him bedridden for days at a time.

Premarital counseling doesn’t cover bathing and dressing your twenty-something husband. There isn’t a chapter about chronic pain interfering with intimacy nestled between the chapters on budgets and chores in the books they give you. No one gives you advice on what to do when your health insurance doesn’t cover the medication your husband needs that costs as much as your monthly mortgage payment. And they sure didn’t tell us how desperate for a cure we’d be. We’ve tried just about everything, some things like chiropractic care and acupuncture, with better results than others, like eliminating dairy from his diet.

Last December, David’s Psoriatic Arthritis went into remission. It was an answer to prayer, but we have no idea how long it will last. He could go back to being bedridden at any time. He still has pain every day, but he, and consequently we, are living a more normal life now. We can go to the movies. David can take our dog for short walks. We are so grateful.

The two things that have sustained me during the worst of times are my Christian faith and our support system, comprised of our family, a few close friends (including other young people with chronic illnesses I’ve met online) and our church. However, I think those two things would help any marriage struggling with any problem. Marriage is a lot of work. Whether you face cancer, a chronic illness, infertility or financial problems, marriage is hard.

One thing I do know: even with our health problems, I am a happier, better person for being married to my husband.

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• Thoughts From the Mind of a Well Spouse
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I am a stereotype.

I was born and raised in the Dallas area.

I received a calf for my third birthday (and it wasn’t from my parents).

I worked for an oil and gas company for over six years.

I took tap/ballet/theater/art classes, but I never played on any sports teams. (I remember watching my best friend play t-ball. I cheered for her, but I had no desire to play myself.)

I was a Girl Scout.

I was in a “scholarship program” once. I wish I had a video tape of my Sister Act talent show routine.

I am conservative.

My husband is the only man I’ve ever kissed.

I own a gun.

I am a reformed baptist. (Yeah, I admit it: I’m a Christian with a preferred denomination.)

I like Twilight, Jane Eyre, Love Comes Softly, The Choice and anything by Jane Austen.

I am a housewife.

I am a stereotype. Unless you ask the right questions.

I’m a total sci-fi/fantasy nerd. I love the Chronicles of Narnia, The Lord of the Rings, Star Wars, Star Trek…

I begged my parents to homeschool me for high school after eight years in public school.

I enjoy wakeboarding and knitting.

My two favorite movies are The Princess Bride and The Hunt for Red October.

I had all the rare side effects no ever gets (except for Brother #1) after my wisdom teeth were pulled.

And oh, yeah. How many women my age do you know that are caring for their arthritic husband?

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Today is the last day of the SITS Girls Back to Blogging Challenge sponsored by Standards of Excellence, Westar Kitchen and Bath and Florida Builder Appliances.. Today’s assignment is to answer the question: Why do you blog?

For me, being a wife to a chronically ill husband is like being a communication device. Maybe not all men have trouble communicating, but David definitely has a hard time verbalizing his pain and suffering. It’s actually one of the most frustrating aspects of having a husband with an invisible chronic illness. I get angry when David doesn’t tell me he’s hurting. I get so upset when someone at church asks him to help move heavy furniture and he does it instead of saying, “Sorry, I can’t.” It’s like he wants to be the strong, silent type.

Part of my being a communication device is communicating with health care professionals. David got really sick at the lab one time. He went into the bathroom after they drew blood and vomited. He didn’t even tell them! Had I only been there to communicate for him, the staff would have made a notation in his chart and notified his doctor.

Also, I interpret for the doctor. When my husband says, “I’m fine,” he means he’s his usual self, which means he’s in extreme pain. I have to be there to tell the doctor, “His neck hurt too much for us to go to church on Sunday.”

David and I are so blessed to have supportive family. They all understand how bad David is. But not everyone’s family gets it. A lot of people have family members that still expect a chronically ill person to do everything the rest of the family does at Christmas and birthdays. They may even forget about things like food allergies or Celiac Disease, since those are invisible illnesses. My advice to other women caring for chronically ill husbands would be to communicate your husbands needs to your family. Remind them that you’ll be there for Thanksgiving as long as your husband doesn’t flare.

Another bit of advice I’d give wives of husbands with chronic illnesses is to be very, very careful when you talk about your husband’s illness around his co-workers, especially if it’s an invisible illness. I’m not friends with anyone David works with on Facebook, partly because I want to be free to talk about whatever is going on with David’s arthritis. Before we go to dinner with his co-workers, I always try to ask him who knows what about his condition. I would recommend asking your husband if he’s comfortable with people at work knowing he’s sick.

This is why I blog: to communicate to the world how difficult it is to live with Psoriatic Arthritis, to connect with other caregivers and people suffering from chronic illness. I blog so I can write honestly (and sometimes vent) about the challenges we face as twenty-somethings with debilitating illness, and maybe share some tips that have worked for us.

Blogging is a part of my function as a communication device. (Cue the Star Trek theme song.)

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• My First Blog Post
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• What is Psoriatic Arthritis?

Today is Day 2 of the SITS Girls Back to Blogging event. Thank you to the event sponsors Standards of Excellence, Westar Kitchen and Bath and Florida Builder Appliances. Today’s assignment is to re-upload a post you wish more people had read and explain why it was important to you.

I originally published this on October 23, 2009, and called it, “I Didn’t Kill My Husband”.

*****************

I didn’t kill my husband. Let me just get that out there. David is alive. And so am I. For that we are truly thankful.

I was only sick for two days. David will finish his antibiotics, but the rheumy’s office said that if he felt okay, he could take his regularly scheduled Humira.

Things got pretty ugly last night. David gave himself his third Humira injection. You may recall the first injection occurred at the rheumatologist’s office. The nurse helped David give it to himself. The second one was two weeks ago at home, and it took him about an hour to do it. We were screaming at each other.

Last night was no different. Well, it only took forty-five minutes this time. David is really disturbed by self inflicted pain. He thinks it’s unnatural to give yourself a shot. In my mind, we inflict pain on ourselves all the time for the greater good. I mean, I don’t like the chiropractor snapping my neck, but I feel great for days afterwards. And David’s in so much pain with his arthritis, what’s the big deal with a little shot?

David had an awful experience as a child. He was sitting on the table in the exam room. His mother was with him. The nurse comes in, grabs the syringe and jabs it into David. Overhand. Hard. I think that’s probably the reason why he doesn’t like shots. I try to remember that when he’s freaking out, but I just don’t get it. Needles just aren’t a big deal to me. I’m having a hard time feeling sympathetic.

I’ve offered to give him the shot. He’s refused. I will say this. It’s not a normal syringe.

You put the injection against your skin

and then push a button which shoots the needle into your body. You hold it still for a few seconds while the medication is being injected. And the Humira burns really bad going in.

Last night, when David finally gave himself the shot, he pulled the injection away too soon. Half of the Humira sprayed all over David and his office. The medicine worth more than gold. I so angry! The cost of one injection is $750.

So the plan is that every other Thursday when David needs a shot, we’ll go to my parents’ house, and one of them will give David the injection. And so my parents prevented me from receiving lethal injection.

My mother gave herself shots when she had gestational diabetes with Brother #3. My father is a paramedic who can start an IV on a screaming infant in the back of an ambulance doing sixty miles an hour. If David can’t trust them, well, I guess he’ll just have to go to the doctor’s office every two weeks.

**********************

This is one of those posts that tells you how bad it can get with chronic illness. I’d love to be the perfect caregiver, and never get frustrated, but that’s not how it is. Thankfully, David and I are able to do the shots ourselves now in about two minutes. It would be really hard for my parents to help him now that we’ve moved to New Jersey! At the time, this was incredibly stressful for us. I’m really glad we’re past this.

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This is quite a busy blogging week! David and I will be publishing a podcast later this week for National Chronic Invisible Illness Awareness Week. Also, it’s Back to Blogging Week over at The SITS Girls, sponsored by Standards of Excellence, Westar Kitchen and Bath and Florida Builder Appliances.

David and I a few months before I wrote this post.

This is my first blog post. It was originally published on April 25, 2009.

I went for a physical a few weeks ago. My most dreaded day of the year. The doctor spent the entire time talking to me about David’s arthritis. He was really nice and encouraging. He had great advice, but when I got in the car afterwards, I couldn’t help but think, “Hey! That was my physical! Why were we talking about David?”

The doctor did ask me if I had any health concerns or questions about myself, but, still.
This is my first blog post. It was originally published on

Don’t get me wrong. My doctor is great. I’ve gone to him since I was in the third grade. He’s a wonderful Christian man, he’s minimally invasive and he has no problem telling me I don’t need anti-biotics. He’s obviously concerned with my mental and spiritual health, not just my physical health. I just had a self centered moment.

I feel guilty. I guess I am a little tired of talking about arthritis. Or maybe I’m jealous. Maybe I want people to ask me how I’m doing for a change. I don’t know.

His advice was to ask my pastor if he knew of another young woman in a similar situation that could talk to me. My pastor didn’t, but the doctor asked one of his patients to visit with me. She said yes, and we met for coffee. She was great! She gave me lots of encouragement. The best part was just having someone who understood what it’s like. We could totally relate to each other even though her husband’s condition was completely different. Chronic illnesses seem to have similar affects on families.

I guess that wasn’t such a bad physical.

What I like about this Post:
It was honest and raw. At that point, David was still experiencing flares that left him bedridden. I remember the relief I felt at being able to write this down.

What I would change:
I wish I would have said something about how much I hoped to meet other women caring for their husbands and other young people struggling with chronic invisible illness.
Also, I wish I could still see my doctor. He really is great. Moving to New Jersey from Texas means all new doctors.
I should have put a picture of us in the post.

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Today’s guest post is from my bloggy bestie, Kerri. You can read more about her at her blog, Living With Chronic Illness.

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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They say it’s good to have someone go with you to the doctor’s office so you have another set of ears listening to the doctors instructions. You don’t want to get confused about the dosage of prescriptions.

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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Often when people learn that David has Psoriatic Arthritis, they say, “I’ve never heard of that!” So what is Psoriatic Arthritis? Psoriatic Arthritis is an auto-immune disease. That means the body is attacking itself. It is a form of arthritis. They Mayo clinic says:

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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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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Fourteen Reasons Why My Husband is the Best

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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