A Young Wife’s Tale

RA Warrior is hosting the Rheum Blog Carnival #3. The official subject is:

Are rheum patients pressured not to take medical treatment? Have you ever read an article that sounds like it discourages medical treatment for rheumatologic conditions? Whether the alternative offered is Eastern medicine, non-prescription medicines, or dietary changes, or spiritual advice, what would you like to say to anyone who would tell patients to forgo medical treatment?

My answer? It’s not just rheumatology patients. David and I have a relative who has been diagnosed with a type of hereditary stage IV cancer. We have prayed for this person and their spouse often over the past year. I’ve been very concerned, of course, but I literally had this thought: Well, at least no one is going to bother them about the medication. No one would tell a cancer patient that organic food or acupuncture will cure them.

I was wrong. They have had people tell them that an all natural approach will cure cancer.

Since we moved to New Jersey, I have had chronic urinary tract infections.

Before anyone goes recommending any treatments or cures, let me assure you, I have tried them all, and my doctor has asked about them all. Extra water and cranberry juice make the pain worse. Cutting back on the Diet Coke didn’t help. Probiotics do help, but they don’t cure my UTIs. The only thing that seemed to make them go away was the holidays. I was fine from Thanksgiving till January.

The pain isn’t horrible. Many people have excruciating pain with urinary tract infections. At it’s worst, my pain has gotten to a 5 or a 6. On an average day, the pain is a 3 or a 4. I’m so thankful the pain is mild compared to, say, the way my TMJ disorder pain used to be.

After several rounds of antibiotics, I was referred to a urologist. That was an interesting doctor’s appointment. At the urologist’s office, there were private ambulances dropping off elderly people on stretches. I was the youngest patient in the waiting room by at least 30 years.

We became active on our new health insurance December 4, but didn’t receive our cards until the middle of January. David ran out of all his medicine, except his Humira, because it’s provided by Humira Patient Financial Assistance. HR wouldn’t help him get a temporary card. They kept saying he could pay for everything out of pocket and then submit the receipts for reimbursement. I don’t know about you, but we don’t feel like putting thousands of dollars of charges on our credit card and waiting months for the insurance company to reimburse us.

Here’s the thing: David has been fine without his meds. In fact, he’s been active. In Dallas he played Kinect and wrestled with his nephews. Since we’ve been back, we’ve gone out with friends a few times, played Kinect a bit, walked Henry to the mailbox a couple of times…David hasn’t noticed much of a difference without his anti-inflammatory drugs, Lyrica, etc.

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 was sick a few weeks ago, I was really worried about David catching conjunctivitis and/or strep throat from me. I actually woke him up from a nap at one point to be sure he wasn’t feeling sick.

One night, I asked David what he would do if he got the conjunctivitis: go to the doctor or try the homeopathic eye drops I’d picked up at the store first? In an effort to get me to stop bothering him worrying about it, David said he would start using the homeopathic eye drops as a preventative measure. He used the drops in his eyes, and immediately starting saying, “Ow! My eyes are burning! Is there sulphur in these eye drops?“