Oh, how far we’ve come in our journey with Psoriatic Arthritis. Remember the awful rheumatologist in New Jersey who wanted to take David off the Humira? He didn’t believe David had psoriatic arthritis.

David had a great visit with his old Dallas rheumatologist last week. David and I told the doctor how well David has been doing. We talked about David being able to run errands, hang out with friends and go to Sunday School and church. We talked about how the latest round of acupuncture treatments have brought David’s daily pain levels down from a 5 to a 1. We were happy and grateful.

(See? Happy and grateful at our friends’ wedding a few weeks ago.)

Then, because he’s an excellent rheumatologist, he asked several specific questions about stiffness. He wasn’t satisfied with David’s stiffness and pain in the mornings and evenings. The doctor is changing David’s Humira injections back to every 10 days instead of every 14 days. You may recall David used to take his Humira every 10 days back when he wasn’t doing so well.

I’m thrilled that the doctor thinks David can be even better! It’s incredible to me how very different this rheumatologist is from the one in New Jersey. I’d love to write the doctor in New Jersey a letter saying, “Gee, good thing we didn’t stick with you! David’s psoriatic arthritis is n remission!” But David says we should turn the other cheek.

I am so thankful David’s psoriatic arthritis is in remission. I’m thankful he has the Humira and his rheumatologist.

Related Posts:

• Status Update
• How David Copes With Psoriatic Arthritis Pain
• David’s Psoriatic Arthritis is in Remission!

I was really sad that I didn’t get to participate in National Chronic Invisible Illness Awareness Week this year. I didn’t even get to do much promoting. Here’s what happened.

The week of September 12-18, National Chronic Invisible Illness Awareness Week, David started getting red welts or hives on his torso. Just a few at first, and I initially thought it was the psoriasis. I immediately went into panic mode, assuming the Humira had stopped working on his Psoriatic Arthritis, and that he was going to start having the terrible flares that leave him bedridden again. David quickly figured out it wasn’t psoriasis. He took Benadryl, and the hives went away.

The next day they came back, only worse. He saw our family doctor who gave him some allergy medicine. I make our laundry detergent and cleaning products, and nothing new had been introduced. David wasn’t using any new shampoos or soap.

This went on for days. Allergy medicine would clear up his skin, but the welts kept coming back. Then one afternoon while I was at my part-time administrative assistant job, David started having trouble breathing. The allergic reaction was making his throat close up.

I took him back to our family doctor, who sent David to an allergist, but recommended we call David’s rheumatologist before we got to the allergist. The rheumatologist was concerned it might be the Humira. The rheumatologist thought this horrible allergic reaction could have been cause by Humira, the medication that keeps David’s psoriatic arthritis in remission. He wanted David to skip a few doses of Humira. I felt sick.

Thankfully, the next day, the allergist told us she was almost certain David was not having an allergic reaction to the Humira. She even said that if David was having this reaction because of Humira, she could help him manage the hives since the Humira helped him so much. It was such a relief to hear her say that!

The allergist kept David on some anti-histamines for awhile, but we never did figure out what was causing the terrible allergic reaction. The hives went away after a few days, and David hasn’t had any more incidents of his throat swelling.

We’re so thankful the allergic reaction stopped and that it wasn’t Humira. But that’s what happened during Invisible Illness Week. It’s always something with us. I guess that’s why we call it chronic.

Related Posts:

• Appointment with New Rheumatologist
• Oh, How Far We’ve Come
• Movie Review – I’m Just Like You – Children With Psoriasis

David and I had the opportunity to watch a new movie “I’m Just Like You – Children With Psoriasis” tonight, and it was wonderful!

If you can’t see the preview above, click here to go to Youtube.

The film follows the lives of five families dealing with Psoriasis, an auto-immune disease that affects more than seven million Americans. We appreciated hearing the stories of young people struggling with psoriasis and Psoriatic Arthritis just like David. Some of the children had parents with the disease. It was great hearing their perspectives. One family has tried naturopathy, like us. It was nice to hear about all the different treatments, and to hear from some of their doctors as well. At just under an hour, the movie would be a great tool for raising awareness. If you have a child who has been diagnosed, it might be a way to help educate their friends.

We can’t wait to share our copy of the movie with some family members who also have psoriasis. “I’m Just Like You – Children With Psoriasis” is an encouraging film. Chronic illness can be so isolating. It helps knowing we’re not alone. If you’d like to purchase a copy, go to www.sparklestone.org

Disclosure: I received a copy of this movie in exchange for writing a review.

Related Posts:

• David’s Horrible Allergic Reaction
• The Psoriatic Arthritis
• Volunteering for Psoriasis and Psoriatic Arthritis

This post is part of the RA Warrior Rheumatoid Arthritis Pain Management Blog Carnival. Click here to learn more from other rheumatology patients about pain management.

Do you have chronic pain? What helps you?

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• Oh, How Far We’ve Come
• What I Wish I’d Known the Day My Husband Was Diagnosed With Psoriatic Arthritis
• Natural Treatments vs Medication for Psoriatic Arthritis

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
• Answers
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This was originally posted on April 25, 2009. It was the second blog post I wrote. It’s amazing to see how far we’ve come. And to know David’s arthritis could be this bad again.

My husband, David has Psoriatic Arthritis. He was diagnosed a year ago, at age 23. He’s only ever had mild psoriasis on his scalp. We actually didn’t know it was psoriasis until the rheumatologist told us. David has a family history of rheumatoid arthritis, so we were relieved to know he does not have the rheumatoid factor, although I recently learned that it could develop into rheumatoid arthritis.

David takes several different medications. The rheumatologist thinks he should go into remission. It could be today, it could be next year. There’s no time frame. The cold really bothers him, as do changes in the barometric pressure. He takes two or three baths a day with epsom salts. He sees a chiropractor a few times a week, and gets a massage or two every month.

And still, with all that, he’s in constant pain. It’s miserable.

The arthritis is so bad we’re selling our beautiful home because David can’t handle the stairs when he has a flare up. The last severe flare up completely immobilized him. I couldn’t leave him. My parents brought us meals. His parents brought us groceries. We need to be closer to our family in case it happens again.

Everyone keeps telling David he needs to exercise. But how exactly is he supposed to do that when it’s a struggle to get out of bed in the morning?

The arthritis is quite a strain on our marriage. David goes to work and then crashes at night. He’s not up to going on dates. Most evenings we’re sitting at home watching a movie. We can’t go to the movie theatre because it’s difficult for David to sit in the chairs for so long. If we take the dog for a walk, it’s a good day. But there is no going to the mall, no bowling or putt-putt. No fairs, no opera. Nothing that requires sitting or standing for any length of time.

David can’t help around the house. He can’t help me move furniture or bring in groceries. Sometimes without thinking I’ll ask him to help me with something. And sometimes he does something stupid like play duck duck goose with kids at church. Then he’s in agony for days afterwards, and I’m resentful.

Even though it totally sucks that my husband has PSA, we really are very blessed. David has a good job. He can even work from home when he’s having a very bad day. Frankly, the fact that he’s still able to work is a huge blessing. We have health insurance. Our family lives nearby. We have the prayers and support of our church. And you know, at least we know what’s wrong, and he’s being treated.

Related Posts:

• The Chronic Illness
• David’s Psoriatic Arthritis is in Remission!
• I Guess We’re Looking for a New Rheumatologist

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?

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• Searching in Vain for New MDs
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I’m excited about today’s guest post from The National Psoriasis Foundation. Be sure to visit their website for more information on psoriasis and psoriatic arthritis.

Each April, in honor of National Volunteer Month, the National Psoriasis Foundation recognizes it’s thousands of volunteers – people who work each day to help further the mission of the Psoriasis Foundation: to find a cure for psoriasis and psoriatic arthritis and to eliminate their devastating effects through research, advocacy and education. Our volunteer network is thousands strong and working in infinite ways to help people with psoriasis and psoriatic arthritis lead healthy, fulfilling lives and hope for a future without their disease.

Volunteering can be an intimidating idea, but it’s not always a matter of giving hours and hours each week; sometimes it’s the smallest action that has the biggest impact. Writing a letter to your member of Congress asking for support of psoriasis legislation could be the difference between getting a bill passed in Congress or not. Speaking to your child’s class about psoriasis or psoriatic arthritis could prevent a child from being bullied because of their skin. Sharing your story on the TalkPsoriasis message board could be the encouragement another person needs to seek treatment.

Our volunteers don’t fit a common mold – besides being passionate about finding a cure. Some volunteer by creating works of art to gift the donors to their Walk to Cure Psoriasis team; others volunteer on local division committees, implementing our programming at a local level; some serve as mentors for newly diagnosed patients, struggling to make sense of the disease; and still others blog about their experience and in that way raise awareness, which is critical to our mission.

Not only do volunteers keep the mission moving, they keep the staff moving. Hearing from an 8 year old who did a penny drive in her class to help find a cure for her little brother gives us a sense of purpose; reading a volunteer’s letter to the editor explaining why psoriasis is no laughing matter can keep us in the office late on a Friday evening; seeing the photos from a support group’s visit to a Congressional office can start a flurry of PR out of our communications department. We want to find a cure for that little brother! We want psoriasis and psoriatic arthritis to be known as the serious, autoimmune diseases they are! We want Congress to recognize the need to fund research that will improve treatment options! We are thankful for our volunteers who remind us of this hundreds of times a week, in a hundred different ways.

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Check out my guest post over at Healing Well.

Matthew 6:25-27 “Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life?

Even though David’s psoriatic arthritis is in remission, we don’t know how long it will last. We are really enjoying a more “normal” life right now, but I still struggle with fear and anxiety.

The last time David saw the awful New Jersey rheumatologist, he would only write a script for a 90 day supply of Humira instead of the typical 12 month supply doctors usually send to the Humira Patient Assistance Program. When I called to order another shipment (they send one 90 day supply at a time), they reminded me he’d need another script.

I told them the name of David’s new rheumy, and they said they didn’t have her info in their system. No big deal. They said they’d contact her and fax her portion of the paperwork.

But, I felt nervous. What if they didn’t have her info because she refused to work with Humira or something? Sounds silly, I know. After my experiences with David’s first rheumatologist and COBRA though, it’s not that farfetched.

Then I started worrying about the rheumy giving us a hard time since David still hasn’t had the lab work done that she ordered. He’s so busy at work right now, and Saturdays we try to rest so that we can attend church on Sundays. We really miss our doctors in Texas with labs in their office. He needs to have the lab work done. It is important. But I was terrified his medicine would be delayed. I worried that he’d have a flare while we were moving.

The doctor sent us the paperwork, saying we needed to fill out our portion. Her office didn’t know we’d done our portion months ago. David took the doctor’s portion to his office and faxed it.

In the past, a rep from the Patient Assistance Program has called me within 24 hours of receiving David’s paperwork. Busy packing, I waited several days. They didn’t call. I worried. I asked David again if he’d faxed it. Not only had he faxed it, but he had the confirmation page.

Finally I called them. They had received the doctor’s portion. Everything was fine. The rep put me on hold while he verified the pharmacy department had received the script.

While I was on hold, I became terribly anxious. What if they said we had to resubmit our portion of the paperwork? Our part is good for one year, but that had always been with a one year script. And what if they thought it was odd we were moving back to Texas, but the doctor was in New Jersey? What if they gave me a hard time about shipping to a new address?

What if David couldn’t get the Humira any more?

Finally, I told myself, “These are the Humira people! They didn’t give you a hard time when you moved from Texas to New Jersey. They’ve never hassled you about anything. They’ve never had to speak with David to authorize or verify anything. They’ve been incredibly accommodating. They have always believed everything you’ve said!”

And they did. They had everything they needed. They were perfectly courteous and professional as always.

David’s next shipment will arrive a few days after we move home. God continues to provide for us, and I shouldn’t panic when I refill David’s Humira. Letting my thoughts spiral into worst case scenarios is great for writing fiction, but not healthy for real life.

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• David’s Psoriatic Arthritis is in Remission!
• Rough Weekend
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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?

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• How David Copes With Psoriatic Arthritis Pain
• Things Are Going Really Well
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