A Young Wife's Tale » arthritis

Friday Fragments

Young Wife — Fri, 17 Dec 2010 04:20:41 +0000

Friday Fragments is hosted by Half Past Kissin’ Time.

Please, please, please, everyone go read R.A. Warrior’s post on why the decision to fight rheumatoid arthritis (or Psoriatic Arthritis) with medicine or go natural is not like giving up margarine or letting your hair go gray. If only it were as simple as eating organic food, exercising and seeing the chiropractor! She said everything I’ve wanted to tell people about natural remedies for arthritis. David does use acupuncture, supplements, diet, etc. but he also uses powerful prescription drugs. R.A. Warrior explains why.

A friend shared this video on Facebook, and it made me laugh. Bless the chicken that had these eggs? That is something Brother #3 would have prayed when he was little. He used to pray for the people who made the silverware, and their dogs, too!

And then here’s one another friend shared on Facebook. It’s not so much funny as it is hard hitting.

Hallelujah! David’s bad rheumatologist refilled his Humira. He doesn’t believe David has Psoriatic Arthritis and wants him to discontinue Humira. I was worried he was going to give me a hard time about the refill. We’re still waiting for our new health insurance cards so we can start looking for a new rheumatologist. But, we’ve got another 90 day supply of Humira!

And in case anyone thought I was just whining about New Jersey being so awful, if you thought I was a snob…I’m not. My friend Maegan was in town for the Army Navy football game, and she said she gets it now. It really is awful. I’m sure there are nice parts of New Jersey, but I’m not near them. South Jersey has bad roads and mean people. It’s not nice. Maegan said so!

Merry SITSmas and a Happy New Year!

Young Wife — Sat, 11 Dec 2010 02:25:22 +0000

SITS is a wonderful group of women bloggers. They offer blogging tips and advice, and feature women bloggers to help them gain exposure. It was interesting to read my SITSmas card from last year.

What a year it’s been for us! Moving from a house to an apartment, from Texas to New Jersey.

All of our Christmas decorations are in storage, so I made everything on our tree. There are some great tutorials here, here and here. This was my first year having a real Christmas tree. I’m not sure that it’s any better than an artificial one. Sorry! I know a lot of people think there’s nothing like a real tree.

We’re experiencing a real winter, although we haven’t had snow, yet. Every morning this week when I’ve taken Henry for his walk, the pond at our apartment complex has been frozen.

This year was another difficult one for us, but there were so many blessings. We thank God for continuing to provide David with free Humira, employment, a church here in Jersey, and trips back home to our family and friends in Dallas.

My hopes for the new year are:

*Zero arthritis pain for David
*A new rheumatologist to help him achieve zero pain
*A very drama free year. 2010 was a rough year for our whole family.
*To finish my novel and get it published
*A job for David back in Texas
*Children. I don’t know when we’ll be healthy enough to have children, but David and I would be very happy if it happened for us this year.

Merry Christmas and Happy New Year!

Love,

A Young Wife

My Epic Fail as a Caregiver

Young Wife — Mon, 08 Nov 2010 01:47:51 +0000

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.

Tired of Defending the Diagnosis

Young Wife — Mon, 18 Oct 2010 13:56:25 +0000

I’m tired of defending David’s diagnosis of Psoriatic Arthritis. He was diagnosed, and rediagnosed by two rheumatologists. A family doctor saw copies of David’s labs and concurred with their diagnosis.

Every doctor we see wants to go over David’s medical history to be sure the diagnosis is accurate. Every nurse and dental hygienist*. It’s a good thing, in that doctors are paying attention. If there is anything else that could possibly be contributing to David’s joint pain, one of these medical professionals will catch it. (We are currently exploring the possibility that David has fibromyalgia in addition to arthritis.)

It’s a bad thing, in that some doctors don’t believe David has arthritis. One doctor even questioned the diagnosis because David is “awful young to have Psoriatic Arthritis.” With that doctor, I chose to ignore all of her comments on arthritis because she obviously knows less about arthritis than I do, and apparently has never heard of juvenile arthritis.

Let me put it to you healthy folks this way. Let’s say you wear glasses, and every doctor you see, the dentist, your general practicioner, your kid’s soccer coach who is an allergist and your wife’s OB/GYN all ask you why you wear glasses. You explain that you saw an optometrist, and after a thorough exam, he prescribed glasses. After you started wearing glasses, you stopped getting headaches when you read. Your life is so much better with glasses. They suggest maybe you should see a doctor about migraines to rule out that as the cause of your headaches. Maybe the optometrist prescribed the glasses because that’s what optometrists do. If you’d seen a surgeon, he would have suggested surgery.

That’s what it’s like for David and I. He has arthritis. Humira has helped. He’s not cured, but he’s certainly not discontinuing his arthritis medication. While I truly appreciate every medical professional’s concern, I’m just tired of going over and over the facts, convincing so many people that David has arthritis.

There’s not really a solution. We WANT doctors to be skeptical. We are always open to new ideas and information regarding David’s health. For instance, that last doctor is monitoring David’s lungs for asthma. He used to use an inhaler, but he thought he’d grown out of asthma. This doctor thinks maybe there is some connection between the inflammation in his joints and the possible inflammation of David’s airways.

So there’s nothing to be done. I just have to keep defending our Texas’ dotors’ good names, and insisting that David keep taking his medication. Thanks for letting me vent!

*I’m not exaggerating about the dental hygienists. No offense to you hygienists out there, but I’ve had many bad experiences with hygienists. Well, okay, I’ve had many bad experiences with dentists and one bad experience with a fake oral surgeon. From the ones who’ve tried to give me advice about TMJ Disorder that was completely contrary to what my specialist told me, to the hygienists saying, “He’s so young to have arthritis! Are they sure it isn’t something else?” I have started saying as little as possible to hygienists.

I Guess We’re Looking for a New Rheumatologist

Young Wife — Fri, 24 Sep 2010 22:29:22 +0000

This is the letter I wrote to David’s rheumatologist.

Dear Doctor,

I am extremely concerned and upset that you would not refill David’s prescription for Hydrocodone. The nurse indicated that you don’t typically prescribe pain medication and especially at “such a high dose.” The dosage David is currently taking is half of what he was taking when he was first diagnosed.

When David was first diagnosed with Psoriatic Arthritis, he played softball and racquetball. We taught a children’s Sunday school class, and attended morning and evening worship services at our church.

Now, (even though he’s taking half the pain medicine he was then) he cannot walk our dog. On a good week, we attend one Sunday service at church. We can’t even go to the movies. He’s hurting too much to swim, and he definitely isn’t playing racquetball or softball.

You should know that David is currently seeing a chiropractor and acupuncturist once a week in an effort to alleviate his pain. He is also attempting to control inflammation through a diet recommended by our acupuncturist. He has stopped drinking soda, gluten and dairy products. He has reduced his sugar intake, and is avoiding tomatoes and peppers.

David’s arthritis pain is very real. I am quite disappointed that you are unwilling to help him with the pain.

I’ve attached a calendar with notes I’ve made documenting David’s bad days and additional treatments. Please let me know if you would like any additional information.

Today, during David’s appointment, the rheumatologist only seemed concerned that David is able to work. While the ability to work may be a good measure of health for some, it is not for David. David is a computer programmer. He could do his work lying in bed. It isn’t a job like say, a plumber or a paramedic, that requires a lot of movement.

The rheumatologist thinks David doesn’t have arthritis. I’m pretty sure he doesn’t even believe David has psoriasis. He thinks David has fibromyalgia. However, David is not tender to the touch, and from what I understand you need at least 11 out of 18 tender spots to be diagnosed with fibromyalgia. Still, the Lyrica (a fibro medicine) is helping David significantly.

When I tried to give the doctor the calendar with my notes documenting the days David was in too much pain to go to church, the days he took his Humira shots, etc the rheumatologist turned his nose up and said, “A calendar showing his pain levels day to day doesn’t prove he has Psoriatic Arthritis. It could still be fibromyalgia.”

I tried not to have too much of a tone when I answered with, “I’ve documented A LOT more than pain levels.” I held my arm out for over a minute before he took it, and once he did, he didn’t even glance at it. Later, he read the first paragraph or two of my letter. I doubt it made it into the file.

It was a very frustrating visit. He didn’t want to prescribe the hydrocodone. I told him that two years ago, David was extremely active and now we can’t even go to church every week. He said, “I don’t understand why the pain would be worse at church.”

David told him, “It’s not worse at church. I hurt all the time. It’s just that sometimes it hurts too much to go to church.”

After I repeatedly stated that David is taking HALF the mg he was when he was first diagnosed, and after David explained that he typically only takes one pill before bed so that he can sleep, he wrote the script. Sheesh. Couldn’t he have just read my letter?

The rheumatologist wants David to gradually stop taking his arthritis meds, including the Humira. I felt like saying, “Over my dead body!” but I didn’t. David assured the rheumatologist that the Humira has helped, and I mentioned that David used to have frequent flares that left him bedridden. He still wants David to stop taking it.

He says he has to see some inflammation if he’s going to keep treating David as if he has Psoriatic Arthritis. He hadn’t looked at the file from the Texas rheumatologists until we asked if he’d looked at the bone scan. Then he started flipping around the chart, and we had to explain everything to him about the doctor sending a digital copy of the file, blah blah blah.

I assured the rheumatologist that I don’t care whether David has fibromyalgia or Psoriatic Arthritis or both, and I don’t care which medications he takes. I just want to David to be better.

David said we should probably look for a new rheumatologist. I hate the thought of starting over with another new doctor, but I can’t stand to have someone so rude and inattentive treating David.

A Day in the Mind of a Caregiver

Young Wife — Mon, 13 Sep 2010 22:38:53 +0000

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.

My First Blog Post

Young Wife — Mon, 13 Sep 2010 14:41:01 +0000

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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Maybe David Does Have Fibromyalgia in Addition to Arthritis

Young Wife — Thu, 09 Sep 2010 21:43:01 +0000

Maybe David does have fibromyalgia in addition to psoriatic arthritis. I was so skeptical when the New Jersey rheumatologist said David might have fibromyalgia, but David swears the Lyrica is helping with the pain. I guess maybe those doctors do learn a thing or two in medical school. We were so blessed that the doctor had six sample bottles of Lyrica to give us so we could really give it a good trial before we have to start paying for it.

The rheumatologist now has David’s file from the Texas’ rheumatologist, so I’m anxious for his appointment in two weeks. I can’t wait to hear what he says now that he has David’s original labs and bone scan.

David has been seeing the acupuncturist and the chiropractor each week. The weather has been cooler, and David has been working overtime without flaring, so we are very thankful for that.

We’re waiting to hear back from the folks at Humira about our financial assistance. David received free Humira for the past year because our insurance doesn’t cover it, and we spend 10% of our gross income on medical expenses. Hopefully we’ll be approved again this year!

We had dinner with some friends from church on Labor Day. It’s really good to be making friends. I’ve been crafting a lot lately, knitting socks for Christmas presents and making ornaments since all our decorations are still in storage.

I found the directions for these ornaments here and here at Remodelaholic.

I’m still struggling to find gluten free dairy free recipes without tomatoes or peppers. This recipe for gluten free meatloaf is David’s favorite new dish (although it does have ketchup). I use less sugar than it calls for, and I substitute rice milk for regular milk. We also like this recipe for Cilantro Lime Chicken. I modified it by using less cinnamon and sugar than it calls for.

That’s what’s going on in our world. We’re also gearing up for National Chronic Invisible Illness Awareness Week. Stay tuned for a special podcast from David and I about Chronic Illness and Christmas!

Psoriatic Arthritis Took a Day Off and We Went to Atlantic City

Young Wife — Fri, 03 Sep 2010 17:02:09 +0000

Okay, so Psoriatic Arthritis didn’t really take a day off. David still had some arthritis pain. But he had a good day recently, and we went to Atlantic City.

It was so nice to get out of the house and do something fun! We walked around the boardwalk and some of the upscale shops. We didn’t buy anything except some saltwater taffy, but it was fun to look.

In other news, we are under a tropical storm warning thanks to Hurricane Earl. We got a notice from the apartment complex management, and then a call from our renter’s insurance company giving us advice about how to prepare. Having lived in Dallas all my life, I’ve never experienced a tropical storm or hurricane. I stocked up on non-perishable gluten free dairy free items such as peanut butter, canned fruit and rice noodle bowls, although I’m not sure if the noodle bowls will do us any good if we lose power since they’re prepared with hot water. Trying to pack an emergency kit for someone with dietary restrictions is hard!

Traditional and Holistic Medicine

Young Wife — Wed, 01 Sep 2010 19:33:52 +0000

David uses a combination of traditional and holistic (or Eastern and Western) medicine to treat his arthritis. He seems to be in the minority.

It seems like most people are either one extreme or the other. Some people refer to medication as poison. Others say the benefits of acupuncture are only psychological.

In our experience, both medication and holistic care are helpful for David. David tries everything for his arthritis. (Of course, everything is under the supervision of a team of doctors.) There is no cure for Psoriatic Arthritis, but we want him to feel as good as possible. And that’s the point: whatever works.

We shouldn’t judge someone for taking prescribed medication or changing to an all natural, organic diet. We should just be thankful when people with chronic illness are able to get relief.

I know there are people out there who think we’re crazy for buying organic, grass fed beef raised without antibiotics or hormones, even though I drink Diet Coke, and David takes some of the strongest medications available. Don’t judge too harshly. We’re doing what works for us.

If you got to the Invisible Illness website, you can sign up to receive their daily updates and the incredible 83 page ebook, Chronic Illness Tips: 263 Ways to Do More Than Just Get By. Here’s a great quote from the book by Lisa Copen:

We are not here to compare our experiences with others in order to see who is in the most pain. We are all hurting. Our goal is to see where our hurts (and our hopes!) may overlap and be a support and encouragement to others.

A Young Wife's Tale » arthritis

Friday Fragments

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