Not long after David was diagnosed with Psoriatic Arthritis, before he started having flares that left him bedridden, I, the caregiver, had an anxiety attack. I blame it on the health insurance company we had at the time and my HR department. Here’s the gist of what made me so stressed out.

Our health insurance plan at the time required us to use a mail order pharmacy for maintenance medication. That’s no big deal, right? Wrong.

There was quite a bit of dispute over what was considered a maintenance drug. For instance, insurance didn’t want to cover an anti-inflammatory drug I was prescribed for a knee injury because I had been prescribed the same drug a year before for something unrelated unless I filled the two week supply script through mail order. Several of my coworkers had similar problems.

When David started taking medication for his Psoriatic Arthritis, we had lots of issues with the mail order pharmacy. David frequently ran out of his medication. It seemed like I was on the phone with the pharmacy three times a week.

Eventually, I met with two HR reps to discuss the problems I was having. I don’t remember everything that was said in our meeting, but I do remember them asking inappropriate questions about David such as, “What pain medication is he taking?” and “Is he safe to drive and work while taking all this medicine?” Normally, I’m perfectly willing to discuss Psoriatic Arthritis and treatments with people, but I really didn’t think it was any if their business. The point of the meeting was to resolve the issue of David not being able to get the medication he needed.

The first anxiety attack happened at work. I saw my TMJ Disorder specialist that afternoon, and my blood pressure was much higher than normal. I assumed the attack had just been high blood pressure.

Later, I described the sensations of not being able to take a deep breath and feeling my pulse throb throughout my body to a friend. She told me I’d had an anxiety attack. She was right. I had another anxiety attack in Target that night. It felt like I was having a heart attack.

The next year, after many complaints, the health insurance plan changed some of its mail order policies. I was glad, but I had already left the company.

I’m thankful I haven’t had an anxiety attack since then, although I’ve dealt with far worse as a caregiver.

What about you? Has your health suffered as you’ve been a caregiver or well spouse?

Related Posts:

• Searching in Vain for New MDs
• Blessed With Health Insurance
• What I Wish I’d Known the Day My Husband Was Diagnosed With Psoriatic Arthritis

The day David was diagnosed with Psoriatic Arthritis we learned several things. One, David has psoriasis. He thought he merely had dandruff. Two, he had Psoriatic Arthritis, which we’d never heard of. David and I both felt pretty good when we left the rheumatologist’s office. We had a name for David’s terrible back pain. The doctor was starting him on medication, sending him for x-rays and a bone scan. The rheumatologist said he’d soon be in remission.

We were so naive. The rheumatologist was overly optimistic. (A year later he was fired.) Here’s what I wish I’d known the day my husband was diagnosed with Psoriatic Arthritis.

1. Remission is not as easy as the doctor makes it sound. David was diagnosed in February 2008. He didn’t go into remission until December 2010. He got much, much worse than he was the day he was diagnosed before he got better.

2. Remission does not mean you’ll be doing everything you were doing before the diagnosis. David still has pain every day. He’ll probably never go back to playing softball, racquetball and wakeboarding. We are extremely grateful that he is doing as well as he is. But it’s not like it was before the diagnosis. Remission does not mean cured.

3. Your life will completely change. This is a really big deal.

David and Me Just Before the Diagnosis

4. Try alternative medicine. Seriously. I’m amazed at how holistic we’ve become. Hello? I’m the Diet Coke Queen. I’ve always believed in eating lots of fruits and vegetables and exercising, but I’m the last person you’d ever expect to hear singing the praises of acupuncture and chiropractic care. It’s shocking to me to see organic milk and produce in my shopping cart today. Alternative medicine has been incredibly helpful for David.

5. There are other young people with chronic illnesses. I wish I’d gotten online to look for chronic illness communities and blogs sooner. Rest Ministries, RA Warrior, my friend Kerri at Living With Chronic Illness and so many other sites have given me so much encouragement. I wish I’d known about them the day David was diagnosed.

6. Say yes every time someone offers to help. Chronic illness is very humbling. Get over your pride. Fast.

What do you wish you’d known the day you received your diagnosis?

Related Posts:

• How David Copes With Psoriatic Arthritis Pain
• Things Are Going Really Well
• Natural Treatments vs Medication for Psoriatic Arthritis

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:

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I’m so excited to feature Pam Stokes Hunter as a guest blogger today! Pam is a very happily married 43 year old SAHM. Her kids are 15 & 17. You can read more about Pam and her struggles with fibromyalgia on her blog, The Journey Leads Home.

I’ve been doing some comparing this weekend. I have been comparing this Christmas season to last Christmas season. I believe I can honestly say last year was the worse Christmas I can remember having. To be completely honest with you I don’t really even remember much of it. I don’t even remember Christmas Day at all. That has nothing to do with my chronic illnesses. After having foot surgery on my right foot the first part of December I thought our holiday season was gonna be spent with me on bed rest with a cast and crutches and everyone waiting on me hand and foot. Little did I know that that was gonna be the least of my concerns although the cast and crutches part was true. After the first week I didn’t get a chance to spend much time in bed. If you are a regular reader of mine then you know that the last year has been the biggest battle in my family’s life.

Christmas is usually the season of peace, goodwill and spending time laughing and enjoying family. Last year that isn’t quite how our Christmas turned out. My dad’s holiday season was spent in and out of ambulances, hospital rooms and ICUs. And ours was spent on the road – sometimes with very little notice – between Nashville and Dayton, Ohio with my casted foot propped up on the dashboard. Yes I was supposed to on bedrest with my foot elevated. I spent most of that time with it elevated in a wheelchair being pushed around the hospital and sitting next to my dad’s bedside or in a waiting room.

I won’t repeat a lot of what most of you already know about my dad’s battle with the papillomas on his voice box and later his cancer there. If you aren’t familiar with it you can do a search on my blog for articles titled My Dad, My Hero. There are 5 parts that explain it all in detail. But just as a quick recap for those who are not familiar with it, we found out months after his breathing difficulty symptoms began that he had a growth behind his vocal chords that blocked his airflow. So, he wasn’t able to breath very well. His oxygen levels would drop. His respiratory rate would drop. There were a number of times that Mom was not able to wake him up – off to the hospital they would go. Mom would call us and we would take off up there. It is a 5 1/2 hour drive. I spent most of those miles on those trips praying and pleading with God to let him live long enough for me to get there. Yes, I had a foot in a cast, was on one leg and crutches but when your dad is in the situation mine was in none of that matter.

The one blessing during all of this time was that my Fibro was so far on the back burner in my mind that my physical health was of very little concern to me. I don’t recall a single flare up that lasted for any sizable period of time. I think I was working and running off of pure adrenaline. Our personal family – Ron, me and the kids – spent our time coordinating traveling and school schedules. We tried to make sure the kids didn’t miss very many days of school. But at the same time my dad’s health was on such shaky ground that we weren’t sure school was the most important thing at the time. Family in Ohio or school in Nashville – which was most important?

As you can see last Christmas wasn’t spent in much of a peaceful state of mind. I don’t recall shopping, decorating or even opening presents. I think God understood. We were all staying in pretty close contact with Him every day anyway. I think all of this is why this year my Christmas spirit is so much higher than it has been in years – not just last year – but in any year that I can recall. I have a tender spirit for the gift that God sent us in His Son 2000 years ago. This year I have been loving every part of the season – the music, the lights, the decorations and today’s snow fall. We are all so thankful for sparing my Dad’s life. It makes this year so much sweeter. We have so much to be grateful for. So many blessings to count. We realize that it’s not about us. It’s about God being in control of our lives and focusing on what He has done for us. While last year was the worst Christmas I can remember ever having in my life it is one that I won’t soon forget because of how God worked through it. He showed us that He is sovereign and that He hears us when we pray. He answers our prayers. He doesn’t always answer us the way that we want but I am reminded ever day that all of the prayers sent to Him this time last year were. I am thankful for His listening ear. It certainly makes this season a VERY MERRY CHRISTMAS INDEED!!

Related Posts:

• Christmas with Chronic Illness
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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!)

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Here’s my first ever podcast in honor of Invisible Illness Week!

Episode 1 – Christmas with Chronic Illness

Click above to listen.

Love,
A Young Wife

Related Posts:

• Christmas ’09 vs Christmas ’10
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Be sure to enter my magazine giveaway!

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.)

Related Posts:

• My First Blog Post
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Although this could lead to an infection in anyone, for a person like David with Psoriatic Arthritis taking immuno-suppressant drugs, this is a big deal.

A stylist at a national hair cut chain did this to David. And there were two additional cuts on the side of his neck. I had to report this to he state. Yes, I filed a complaint. It is not acceptable for a licensed professional to cut a client that many times.

We put some Neosporin on David’s neck, and it’s healing up nicely. However, if he had gotten an infection, his body would be in a weakened state, and it would be more difficult to fight off than it would be for a normal person. Plus, he would have to stop taking his medication until he was completely well, so he would run the risk of an arthritis flare.

And then there’s this.

You probably can’t see it, so let me show you this.

I purchased this on September 10. Not good. This is actually the fourth time I’ve found this brand of bacon well past its expiration date at our local grocery store. (This is the second time I’ve failed to catch it until I’ve gotten it home, and this time I’d already thrown away the receipt.)

I plan to speak with the store manager Friday when I go grocery shopping again. Depending on his or her response, I might be filing a complaint with the health department.

When you have a chronic illness small risks are big risks. A little food poisoning can land a perfectly healthy person in the hospital. Think of what it could do to a person who is already sick. My major in college was culinary arts. We talked about the most at risk groups over and over. They are the very young, the elderly, and people who already have health problems.

Minor risks for the average person are enormous risks for a person with chronic illness. Playing on the church softball team is fun. Of course, there is a slight risk you might be injured. When David was first diagnosed with Psoriatic Arthritis, he continued to play, until he was injured. At that point, I was the one putting my foot down saying, “You cannot break your arm!” Now of course, David is much worse, and would never attempt to play softball.

The acceptable risks are different for each person living with a chronic illness, and it may even vary from day to day how much risk you are willing to take. What risks are you willing to take as you live with chronic illness? What risks are you NOT willing to take? I never would have dreamed we’d be worried about the risks involved in David getting a haircut!

Related Posts:

• What I Wish I’d Known the Day My Husband Was Diagnosed With Psoriatic Arthritis
• Thoughts from the Mind of a Caregiver: Frustrations of a Well Spouse
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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

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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• Being a Wife to a Chronically Ill Husband is Like Being a Communication Device
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