I'm generally a pretty positive person. Or at least I try to be. I have a lot of health complications and haven't had a day where I feel 100% good for about 12 or 13 years. But even through this, I TRY to stay happy and positive. And people are usually commenting that I'm a bright and cheery person.
But today I'm struggling. I admit that I have a lot of moments like this. Even if I don't show them to "the world." In fact, perhaps only Jeff and Heavenly Father know how much I really do struggle internally with having chronic health problems.
I don't even know how to blog about stuff like this most times because 99.8% of the general population doesn't understand and can't try and pretend like they do. Chronic pain is like that. Most of the health conditions I have are "silent diseases." People wouldn't know just by "looking" at me that I'm sick a lot. So I just keep everything to myself. And I express it to my husband who is amazing and dear and takes great care of me.
The weather we've been having is wreaking particular havoc on my body. The pressure changes really affect my joints and my arthritis. When it gets really bad - mostly when the weather goes from warm to cold (and especially when this change is drastic or quick) - it is hard for me to even move or get out of bed for that matter.
The saving grace I have is Enbrel.
It's the medication I've been taking for 8 years (next month) to control the symptoms of my arthritis. Enbrel is an injection I give myself subcutaneously. I've always injected myself in my thigh and I've never had a problem giving myself the shots.However, recently, I was given a new type of shot. I used to mix the medication myself in a little vial mixer they sent. (see illustration below:)
And this last batch of the meds, they sent are pre-filled syringes.
I didn't think there'd be much of a problem. In fact, I figured it would be good - cutting out a step by eliminating me from having to mix the vials myself. But ... I just tried injecting it. And it's BAD. Awful. I am crying. The needles are bigger. Duller. It was hard to even try and inject myself in the first place. And then the solution itself BURNED going in. And I have a high tolerance for pain. But I'm talking BURNED. I couldn't even finish giving myself the injection. I know what you're thinking. "What a wuss! Just suck it up and take the pain." But I'm NOT a wuss! I've been giving myself shots regularly for EIGHT years and this is different! This is bad!
I immediately went and called my doctor's office. But, because it's Friday, and after 5:00 pm, I only got their answering machine.
So, next, I decided to do my own little online research to try and see what's going on. I found some message boards that say the new pre-filled syringes have an extra preservative in them that the old "mix it yourself" solution didn't have. And some people react very adversely to this preservative. (And apparently I'm one of those "some people.")
By this time, I'm just mad. I'm mad that the manufacturer changed the product on me. A product that I've been using for EIGHT YEARS! And product that was JUST fine before! Don't they know the old addage, "If it aint broke, don't fix it?!"
So, the next step was to call the pharmacy. I wanted to know if they accidentally messed up and sent me the new pre-filled syringes when they should have sent me the mix it yourself ones. And if they could send these ones back and give me a refund and let me get the right ones. But ... the pharmacy said they can't do that. They can't send a medication back once it's left their store. And because the medication is so expensive (without insurance, it's about $1500 per month!! Luckily I am insured ... but that's another story for another day ... or five), they can't issue a refund either. So they suggested we call the actual manufacturer.
By now, I'm so upset that I'm crying and frustrated (and in a lot of pain). So Jeff is doing the calling. He's on the phone with the manufacturer right now, as I type. (Which I SHOULD stop doing, because sitting is hurting.)
I just overheard him say that they do still make the stuff I used to take - the mix it yourself vials. And that I just have to request that my doctor write a prescription specifically for that. And that the pharmacy makes sure and fills it for the "25 mg multi-use vial." Which is actually a huge relief. And enough to make me stop crying. BUT ... in the meantime, I can't get a refund. I can't get more meds yet because the insurance only covers one dose per month and we sure as heck can't spend $1500 to get some without insurance!
And. I'm in pain. And the only thing that helps when it gets this bad is Enbrel.
So. What to do? I'm going to try and buck up and give myself this new dose. Because I would rather have stinging for a couple of hours than the inability to move for 10 days.
Now that I've blogged about all this, I'm starting to feel silly. For venting. When most people won't even know what the big deal is. It's a little embarrassing. Which is why I almost always just keep it to myself. But I also admit that I do feel better getting it down on "paper."
I guess the good thing (if I can't give myself a shot right now) is that maybe I can get rid of the cold I've had for the past month or so that's been giving me so much grief. The only downside of Enbrel is that it is an immuno-suppressant, which means it greatly lowers my immune system. So I am almost always going to catch anything that's going around. And it knocks me out more than it does the "average Joe." But that's a small price to pay if it makes my arthritis pain all but disappear.
