Being the well spouse or caregiver is hard. I’m not going to sugar coat it for anyone. David’s psoriatic arthritis has been fairly stable lately, praise God. I hope this post is an encouragement to other well spouses out there, dealing with the frustrations of chronic illness.

I love my husband. We have a happy marriage, but lest you think I don’t ever get tired of taking care of David, here are some things I’ve asked David, in my mind or out loud.

*Why did you wait until I was asleep to ask me to rub your back?

*Why didn’t you tell me you were running low on your medication? You’ve been out for a week! No wonder you’ve been so cranky.

*When I ask you to help me carry in groceries, it’s okay to say you’re in too much pain to help today. It’s a lot better than listening to you grunt and moan.

*Why oh why am I the one pushing you to try the anti-inflammation diet? Isn’t it worth trying? If it works, isn’t it worth eating a restrictive diet for you to be in less pain?

*Why do you think you can tolerate gluten now? I lived with you when you ate it. I’ve been around you when you’ve accidentally ingested gluten. It’s really awful when you eat gluten.

*Other than the time I had strep/conjunctivitis and couldn’t drive, you never go to the doctor with me. I cannot wait until I’m pregnant. Payback for you refusing to go to any any healthcare professional without me is coming.

*How come you have psoriatic arthritis, but you can still beat me at Kinect sports? And why do I still have to have your help opening jars?

Related Posts:

• When the Well Spouse Gets Sick
• The Aftermath
• How to Cope When Your Spouse Has a Chronic Invisble Illness

If you follow me on Twitter you know I was really sick over the weekend. Friday afternoon, I started having trouble with my right eye. Eventually, I realized it was conjunctivitis, also known as pink eye. I have never had conjunctivitis, even as a child. David thinks I got it from 3D glasses at the early screening of Tron we went to. Eww…

So, Friday night we picked up some over the counter eye drops with a homeopathic remedy for pink eye. David was feeling pretty good, and around seven o’clock we worked out together. By eight o’clock my throat was hurting. By nine I had body aches and a fever. I took some ibuprofen, but I continued to get worse.

Saturday morning, I woke up very sick. David had to bring me food and help me get dressed and out of bed. Usually, it’s the other way around. I’m the caregiver. The well spouse.

I lay in bed with chills while David tried to find an after care clinic. We couldn’t find any near us using google, so David called his family doctor’s office. They didn’t have weekend hours, and they said they couldn’t recommend anyone. David found a clinic 45 minutes away in Delaware using our health insurance company’s website. It was the closest we could find. Did I mention we still don’t have our new insurance cards even though our coverage began December 4?

Praise God David’s psoriatic arthritis wasn’t flaring. He was able to drive me to the clinic. I truly did not feel safe driving. By this time it felt like someone was sitting on my chest. I had coughing spasms when I tried to take a deep breath.

My temperature was 102.1 when the nurse checked me. When the nurse practitioner came to my room, I was lying on the table with my knees bent to take the pressure off my lower back (something David was able to recommend) which was aching like every other inch of my body. The NP’s first words were, “What happened?!” I guess I looked pretty bad. My eye was swollen as you can see in this lovely picture.

She didn’t read my chart, so with my throat killing me I had to go back over everything I’d just told the nurse. She said I had strep throat, but she didn’t take a throat culture. Not the greatest healthcare professional I’ve ever encountered. She was a smoker, too. She said the problem with my eye could just be from sinus pressure, but she’d treat me for conjunctivitis any way. I have two problems with that. One, why don’t you ask me a few questions about my eye to learn more like the nurse did or do some lab work. I don’t want to pay for and take medicine I don’t need. Two, I had mild sinus pressure. I’ve experienced far worse, and never had eye problems like that.

David was so great. He reminded the NP about symptoms I forgot to mention. He got all my meds from the pharmacy and walked Henry. The NP gave me a huge dose of ibuprofen in the office to get my fever under control. It helped a lot, and I started on antibiotics Saturday afternoon. Sunday morning I woke up with conjunctivitis in both eyes, and my throat was still killing me.

I don’t know what would have happened If David’s psoriatic arthritis had been flaring. I might have just called an ambulance. Maybe I could have called a friend at church, but I don’t really feel comfortable enough with our friends here in Jersey to call for something like that, yet.

I’m slowly recovering, and thankfully David hasn’t caught the conjunctivitis or strep throat.

What happens when the well spouse gets sick? The house is a wreck. The well spouse doesn’t really rest as much as they should. The chronically ill spouse does more than he/she should and risks a flare. The Pastor’s family leaves homemade chicken soup on the door step and you thank God you don’t have to eat leftover barbecue. It’s just not the thing to eat when you’re sick.

Related Posts:

• Thoughts from the Mind of a Caregiver: Frustrations of a Well Spouse
• Thoughts From the Mind of a Well Spouse
• The Aftermath

I have failed as a caregiver. This is really an epic fail. When David first went gluten free, I was so careful to read labels. I got a little more comfortable as time went on. When David went dairy free as a part of his anti-inflammation diet, I was cooking everything from scratch anyway, so I wasn’t as careful. There are only a few prepackaged items David eats now. One is tortilla chips, the other is cereal.

The cereal David has been eating has gluten.Thank you Arthritis Ashley for pointing this out to me. I completely forgot about malt.

It’s bad enough that I’ve been serving David gluten. I feel like a bad wife and caregiver. But when I told David he took this to mean gluten doesn’t bother him. Let me assure you: it does. I lived with him when he ate whatever he wanted, and I lived with him when he stopped eating gluten. There was a huge difference.

While we were in Virginia on David’s business trip, he had dairy several times. I couldn’t see any difference. In fact, he had a great week! He walked Henry a lot, loaded and unloaded our car, and sat in class eight hours a day. It was one of the best weeks he’s had since his diagnosis. So he’s back to eating dairy, although I probably won’t go crazy and serve a lot of cheese products. This will make things so much easier if we go out to eat or if someone invites us to eat at their house.

It’s really a good thing that dairy doesn’t inflame his joints, but I’m kind of disappointed. It would be so nice if we could alleviate some of David’s arthritis pain by eliminating dairy.

I wish dietary changes cured arthritis.

Related Posts:

• A Day in the Mind of a Caregiver
• I Was Right or David is Staying Gluten Free
• The Verdict on Gluten

Invisible Illness Week is over, but I hope everyone will take time to listen to the archived conferences. They were such a blessing to me, and I’ll bet everyone has a friend or relative dealing with a chronic invisible illness.

I don’t know that I’ve ever used David’s arthritis as an excuse to get out of something, but I have said these words a few times, “Honey, I’m not glad you have arthritis, but I’m we don’t have to go to X because of your arthritis.” Terrible, I know. It’s so difficult for us to get out and do stuff, you’d think I’d jump at every opportunity to leave the house.

Another dirty little secret? I think caregivers have it worse than the sick spouse. I can say that after the intense pain of my TMJ Disorder made it impossible to eat normal food for months, and my jaw spasming as I spoke with people at work. It was not debilitating like David’s arthritis, and it’s certainly not the same thing, but it was bad enough that I can still say with confidence that it’s easier to be the sick one. Watching a loved one suffer is awful.

(Interesting side note about my TMJ Disorder and an open bite: I have a hard time with drinks. Water and Diet Coke spill down my chin all the time. I’m like a toddler. Another embarrassing side effect.)

Finally, I get really tired of hearing about living debt free. Does anyone really think we should skip a treatment for David because we have to pay for it using a credit card? If you do, you’ve probably led a very healthy life and never even had a broken bone.

So, there you go. All my politically incorrect dirty little secrets about chronic illness are out there. (I really hope no one flames me!)

Related Posts:

• The Aftermath
• How to Cope When Your Spouse Has a Chronic Invisble Illness
• When a Caregiver Gets Sick

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.

Related Posts:

• Being a Wife to a Chronically Ill Husband is Like Being a Communication Device
• My First Blog Post
• Chronic Illness and Marriage

A day in the mind of a caregiver. On any given day, these thoughts may pop into my head:

Remind him to take his medicine.
How are we going to pay this medical bill?
Thank you God that the drug manufacturer pays for David’s Humira. We’d be living with our parents if we had to pay $1500 a month for that one medicine.
Do we have to do an injection today?
Quick! Pack a nutritious lunch that meets all his dietary restrictions!
I need a Diet Coke.
What can I skip paying for so David can get a massage?
I hate arthritis.
I hope David is feeling good when he gets home from work so he can caulk the bathtub.
When are we going to be able to have kids?
Am I out of Diet Coke?
Thank you God for Diet Coke.
Am I the only 20-something woman taking care of her husband?
I need to vacuum.
I forgot to brush the dog before I vacuumed.
Don’t forget to pick up David’s prescription.
Thank you God for health insurance.
What exciting dish can I make for dinner tonight that is gluten free, dairy free, tomato and pepper free?
I have to workout, eat right and take my vitamins. What would happen if I got sick?
If I blog about this again, will people think I’m whining?
Hand me another Diet Coke.

Related Posts:

• Friday Fragments
• SITS Day!
• New Doctors and New Jersey

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!

Related Posts:

• Thoughts from the Mind of a Caregiver: Frustrations of a Well Spouse
• My Dirty Secrets About Chronic Illness
• Being a Wife to a Chronically Ill Husband is Like Being a Communication Device

The Aftermath or My Recovery from David’s Flare Up Part 2

I’m getting the house under control. I just dusted the whole house, in the hopes that it would make my throat feel better. My allergies are always severe in the fall, and they’ve started up early this year, probably due to all the rain we’ve been having here in Dallas. And of course, rain aggravates David’s arthritis, so he’s hurting, but the ligament does seem to be better.

I really wanted a few days where I was just at home doing nothing but cleaning. But, life goes on, and I’m not getting any days of staying at home. Still, I think I’m getting there with the house. We’re getting back into our “normal amount of arthritis pain” routine. The dishes are cleaned up every night. A load of laundry is done every day. I clean something every day. I’m hopeful that by Thursday I’ll be caught up.

The real challenge is meals. We’ve gotten off of David’s diet. We’re back to eating lots of meat, and too much junk food. Dinner tonight was a pizza. I had planned to cook a healthy, vegetarian dish, but it’s so easy to give in when David calls on his way home from work and says, “Gee, are you sure you don’t want me to pick up a pizza?”

To me, diet is one thing we can control. We have no control over the weather or David’s arthritis flares or his ligaments. But, we can make healthy food choices. Lord willing, we’ll be back to healthier choices tomorrow. That’s my goal anyway. I was especially encouraged by the podcast from the National Chronic Invisible Illness Awareness Week conference about Simplifying Your Home and Housework. You can listen to the archived radio shows here or download them on Itunes. After listening to the show, I sort of started meal planning by making a list of all the meals I cook regularly. Just that helped clear my mental fog. I started thinking, “Oh, yeah! I make a great mushroom risotto that David loves! I can get back to cooking.”

Good grief. It’s not like he was even in the hospital. He was only bedridden for a few days. How do people do it? I mean, it could be so much worse.

Things are getting back to normal. David was finally convinced to cancel our open house scheduled for Sunday. Thank goodness! Our house will be off the market on September 30. This has taken a lot of pressure off of me. That, and the hope we’ve been given with the Humira has helped me tremendously.

David is still not sleeping well. Hence, I am not sleeping well. And with that, I’d better stop. I’m really tired. This isn’t the greatest blog post I’ve ever written. I just wanted to let folks know that things are looking up for David and me this week. I hope you’re having a good week to.

Thank you so much for all your prayers. God is good.

Love,
A Young Wife

Related Posts:

• My Dirty Secrets About Chronic Illness
• How to Cope When Your Spouse Has a Chronic Invisble Illness
• Chronic Illness

If you take care of a loved one with a chronic illness or an invisible illness, what do you do when you get sick? Here are a few tips.

1. Call a friend and ask them to bring you soup or cough syrup. Send them a text message or email if your throat hurts.
2. Go to the doctor. Nip your illness in the bud. Don’t let a minor illness escalate into something serious.
3. Rest. Take care of yourself so you can get back to caring for your loved one.
4. Ask your church to send someone over to care for your loved one if they need help. Someone from your church could drive them to a doctor’s visit or take them to the pharmacy to pick up their meds.
5. If your loved one offers to do something for you, let them.
6. Call your next door neighbor and ask if they will get your mail and newspapers. They could even put your trash cans to the curb on garbage pickup day.
7. Do not worry about the cleaning and laundry. It will still be there when you are feeling better.

Related Posts:

• My Dirty Secrets About Chronic Illness
• The Aftermath
• How to Cope When Your Spouse Has a Chronic Invisble Illness

Today is the first day of National Invisible Chronic Illness Awareness Week. I’ll be blogging about Invisible Chronic Illness all week. Click here for lots of great information and articles check.

My husband has Psoriatic Arthritis. This invisible illness is quite a challenge for us. Here are some ideas that may help you if your spouse has a chronic invisible illness.

1. Make sure you have a support system. For me, this is my family and a few close friends. You may want to utilize a Sunday School teacher, a counselor, or a support group for caregivers. Check out Rest Ministries Hope Keepers.
2. Take care of yourself. Exercise, eat right, have a hobby. The healthier you are spiritually, mentally, and physically, the better you will be able to help your spouse.
3. Educate yourself. Read everything the doctors gives you. Do research on the internet. Read up on your health insurance. Get to know your pharmacist and ask them questions about your spouse’s meds. Knowledge is power.
4. Remember it is okay to be sad. It is perfectly alright to feel upset about your situation sometimes. We are to weep with those who weep.
5. With chronic invisible illness, you and your spouse may need to get professional counseling to help you cope. Check out the Minirth Clinic or New Life Live for recommendations for Christian counselors.
6. Figure out what you CAN do. Maybe you and your spouse will never be able to go dancing again, but you could go to a concert. Maybe you’re like us, and you can’t go to the movies, but you can watch Netflix! Get a movie size candy from the grocery store and a bottle of Diet Coke. Make it fun.
7. Research alternative medicine, such as chiropractic care, massage therapy, diet and supplements. Even if there isn’t a cure for your spouse’s chronic illness, perhaps they can get some temporary relief from Epsom salts in a hot bath.
8. Talk to your spouse. Ask them what they’re thinking. Find out what their concerns are. Ask them how you can help. And a few weeks later, ask again. I’m always surprised at how my husband can change his mind about things from month to month.
9. Get life insurance. Who would care for your spouse if something were to happen to you?
10. Maybe your spouse can’t do everything they used to. But maybe they don’t mind if you still engage in those activities. Your spouse might love to take a nap while you’re wakeboarding.

Keep in mind, #2 doesn’t happen for me while David is having a flare up. We had pizza twice this weekend, and I certainly wasn’t exercising. And getting life insurance for myself is on my to-do list.

Love,
A Young Wife

Related Posts:

• My Dirty Secrets About Chronic Illness
• The Aftermath
• Thoughts from the Mind of a Caregiver: Frustrations of a Well Spouse