Crazy Cow Country Farm

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August 17th, 2006 · 29 Comments · Uncategorized

Ever stuck your husband with a needle? I did it last night and I was so nervous my hands shook.

Ed’s been diagnosed with psoriatic arthritis and, if left unchecked, it will kill him within the next 18-24 months. We found this out late last week. No, check that. Ed found out late last week but he finally told me Monday or Tuesday evening. It’s not that I didn’t *know* it, I did, in the back of my mind. He’s been deteriorating since January (we thought he got into the poison ivy near the cow barn) and logically I knew that he was only going to get worse and eventually be crippled. His skin (every single inch of it) was covered with large welt-ish weeping scales/sores and he was literally swollen to twice his size. He couldn’t wear socks, damn near couldn’t get his shoes on, his wedding ring was cutting his skin, and his shirts were stretched tight. His back was hurting, knees and hips were aching so badly he couldn’t lay down. And he was starting to have trouble breathing. I mean, really having trouble. Then finally, his skin starting falling off in chunks. I vacuumed the living room every morning because he was sleeping on the living room floor.

He was diagnosed with rhuematoid arthritis about 15 years ago and then psoriasis about 13 years ago. Both were treated independently of one another. Throw in knee surgeries, back issues, and foot problems, and he’s been in significant pain 90% of the time during our span of marriage. He made an appointment with yet another dermatologist and went to work (this was several weeks ago) but one look from his boss during her visit and she sent him home telling him she couldn’t bear to watch him try to work on cars while collapsing in chairs and hobbling around dragging the worst foot. She said it looked like shingles. He called me on the way home freaking out because his appointment wasn’t for another week – he has no sick leave. I called the local family practice office and looked at pictures of shingles on the ‘net. It did look similar to that. The dr. worked him in and told him he had psoriatic arthritis – it’s a different form that must be treated specifically. The type of psoriasis he has causes this arthritic reaction and you cannot treat for *just* psoriasis or *just* arthritis, it has to be treated properly – for the disease, not for the two independently. Which is what he’s done for over a decade. This type of arthritis attacks the bones, not joints (although they do swell and become painful), and makes the bone “fluffy”. It also constricts breathing, that’s why he couldn’t breathe. His blood pressure is now sky-high and won’t come down despite trying several different meds.

She told him this was the worst case she’d ever seen, drew blood to confirm it, and gave him a “super shot” of steroids to get it uncle control pdq then told him to go to the specialist in town who can treat it. That shot was a miracle! Within two days you could see the bones of his ankle again and by the end of the week he could bend over and touch his toes or sit cross-legged on the floor. I’ve NEVER seen him do either of those things! He went the following week to the specialist and he confirmed that he does have the disease. He explained that long-term steroid use is not advisable and he recommended Enbril, a twice a week injection taken at home. Just one catch – it’s $2400.00 each month for 8 shots. Yes, you read that right….. twenty-four hundred dollars every four weeks. Naturally, most insurance companies deny it. My wonderful Wal-Mart insurance approved it because there’s no way we could actually *get* it… our deductible at 20% would be nearly $500 each month. So they approved *that* but denied the $250 cream – I’m sure because we’d be able to actually get that one.

But Wal-Mart has yet to fully understand the determination of ‘ole Loopy. You’d think they would have learned by now.

I contacted the Pharmacare office and they have a program for people needing access to Enbril who are advanced enough that the disease will kill them if they don’t get the opportunity to get it under control. There are 68 people in the country they have allowed to be on this program and, get this, they will eat all but $75 of our deductible and they’ll do this for two years – while Wal-Mart picks up nearly $2,000.00 each month. Hopefully that will be enough time to get it under control and perhaps have some other options. They are hoping that will buy him another 10-15 years.

I can’t believe I just typed that. We are hoping to prolong my husband’s life for 10-15 years. It is devastating to read that and accept it. Yes, I’m crying.

We have talked at length this week and will continue to make plans. How do you plan for this? When do we tell the boys? He’s worried about getting the farm in working condition with an income from the animals and boarding so that I can have something to either continue or sell. Naturally, we are ineligible to purchase more life insurance, or it will be priced out of our hands from this point forward. I can feel the urgency in him as he talks of what needs to be done yet this year – the fences he needs to put up, the shelter in the back pasture, the stalls in the barn, the additional pens to separate animals as needed. And then he really laid it on me. “I won’t stay around and live like I have the past six months.” I know what he means and I understand it. I wouldn’t want him to. The pain he’s been in the past six months has left him contemplating the unthinkable on many occasions. I do understand choice and I respect that. He’ll stay as long as there’s hope and as long as it’s under control. Once the doctor’s tell him it’s beyond the point of reversing or managing…. well. And then even more heartwrenching, “You’ll still be young enough, you’ll find someone else.” My heart lurched and jumped in my throat. It’s still there. Stuck.

It’s like a hallway you walk down and there are doors that are locked and you can’t open, doors that open freely, and ones you just know you shouldn’t open. I don’t want to open the door to really *know* all of this. I don’t want to. I’ve spent the week immersing myself in project after project and exhausting myself physically so that I don’t have time to think about it. I can’t. I can’t open the door. If I open it, I’ll break.

I don’t know what we’ll do. I’m not sure what to do anyway. He seems determined to continue with our farm plans because anything we do here increases the value dollar wise as well as our quality of life. It will keep us busy. And it’s always been his desire, to have a working farm. We just need to speed up the process. At the point we’re at, all the upcoming major projects will require a tractor so I’m going to re-figure our budget and call the bank to see about a loan. We had not wanted to take on any further debt but our rate of saving and plan was to have a tractor in the next few years and that’s too long.

Pharmacare agreed to send an emergency shipment off the normal delivery route and we ordered it Monday. It came last night after the dr. office had closed so I called the 800 number to find out how to inject him. I’d done insulin shots before for a friend but that was years ago and I was holding $400 in my hand so I didn’t want to make any mistakes kwim? She talked me through it, there are several things to remember about choosing sites and then…. we did it. I was shaking from nervousness but I did it. I think next time will be easier. We’re watching him for reactions and will take note of anything. We’re also watching to see if it appears to start helping him. See, that’s the rub. It only works in 50% of the patients who’ve taken it. Another door I can’t open.

I bought 40 bags of topsoil, compost, and peat this morning and two flats of plants. A new shade garden has been planted. Another two trailers full of rocks have joined the rock pit. The field north of the barn has been mowed, trimmed, and picked up. I’ve made a path out to the West pastures to start working out there next week. Tomorrow I’ll take calls all day and then again over the weekend, working at Wal-Mart during the evening. Next week, when the boys are at school, I’ll need to make soap and come up with other projects. I just can’t open the door. I can’t let the boys or anyone see what will happen to me if I do. I can’t lose him. I can’t. I lived for him and he has to live for me.

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