Saturday, February 18, 2017

The Truth About Medications And Being Autoimmune

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    Everyone has gotten sick in their lifetime. I’m not just talking about the sniffles or a touch of the flu here. I’m talking the knock down, drag out illnesses that spawned the phrase ‘you look like death warmed over’. To which the reply is usually ‘I feel even worse’. This is the type of illness I’m talking about and I want you to think of.
    Now, what do you do when you’re that sick? Well, most people usually take a pill. And whether it’s aspirin or an antibiotic, eventually, we get better. Because these are the normal illnesses that come and go and happen to all of us. And the medicines are tried and true and effective. But not all illnesses are normal and not all medications are tried and true and a lot are ineffective.
    So how does it work for those of us who have a chronic disease and don’t have the ability to take a pill that is well known to help us? It’s a crap shoot for one thing. It is basically a list of side effects with no real promise of anything because there’s no guarantee our body will react to this medication in the same way as anyone else’s. That’s what happens with autoimmune diseases. The immune system does whatever it wants and we’re along for the ride. Throw a pill in the mix and it’s really just one big chemistry experiment.
    But the issue that most people don’t understand is the fact that medications that are intended to help those of us with autoimmune diseases don’t work in the same way as most other medications do. They are intended to work at a specific and constant level in the blood and they take time to build up to that level, sometimes even months. It’s not like having a headache. You can’t take a couple of aspirin and it’ll be gone in 20 minutes or so. When you get Sjogren’s or Lupus, or any of the 300+ diagnosable autoimmune conditions, your meds could take 6 months to a year to kick in and they must then be taken daily to maintain a therapeutic level. Forever. (Go ahead Sandlot fans…)
    That is, unless they stop working. Yup. They can stop working. Just like that. Another nice effect of having an autoimmune disease. You see, when you take a medication for the flu or a sinus infection, the medicine is fighting whatever is causing that illness. A virus or bacteria. And when that bug is gone, the illness is gone, and you can stop taking the pills.
    But with an autoimmune disease, there is no bug. The medication is ‘fighting’ your immune system to keep it from attacking you. The medicine essentially keeps parts of your immune system from getting too strong. But this is your body. And your body can learn and fight back. So it does. Your body can actually find ways to work around the medications that are supposed to be helping it. This means they won’t work anymore. So those of us with autoimmune diseases have to stop taking them. And when we do, any good they are doing in terms of pain relief or other symptom relief, goes away. We go back to being fully symptomatic with nowhere to turn. Until the next medication can be tried...
    Imagine living a life where the illness you have causes pain and attacks your body. There is no cure, but there are medications you can take. But you have to wait a long time for those medications to kick in if they are going to work. Then, if they do work, there is more than likely a chance that they will stop working. Sooner or later. And the cycle will start all over again.

    Yeah. That really sucks doesn’t it.

Friday, February 10, 2017

Five Things We Don’t Admit On Our Bad Days

    Have you ever had a day when you just stared off into space? Not staring and thinking deep thoughts about your future. But empty. Random thoughts floating around occasionally. But nothing coherent. And definitely nothing cheerful. This is the place I am in right now. My brain has just shut down. The disease has become too much to handle any more and my brain went bye-bye. So, I thought I’d let you into the taboo side of chronic illness and pain. The stuff we really don’t want to admit. The thoughts we have when our brain and body are at their lowest.

  1. I am tired. That’s why my brain shut down. Fighting pain is hard. And those of us in daily pain don’t ever get to rest. The constant struggle of trying to stay physically in control of pain is draining. Add to that the daily demands of running a home and raising kids and you have the perfect storm for extreme fatigue. And extreme frustration. And we crack. Because being nice and patient and understanding is also hard work. And when our brains get tired of fighting our disease, we don’t care about the niceties anymore. My brain already fled so only fight is left. And it doesn’t matter who gets in the way-sorry!

  1. I am sad. It’s emotionally drained. It’s extremely hard to deal with an illness every day and then still be able to deal with what comes in every normal relationship I know of. Disagreements. My husband and I are no different. We argue. It’s not always roses and chocolate. And to be honest, I don’t always have the fortitude to deal with any discord, whether it’s about a burnt dinner or the several hundred bucks he just lost at the casino. I’ll end up in a puddle of tears. (And if it’s about the kids, fuhgetaboutit!) Pain makes everything personal and much more intense. So the small stuff becomes huge and nastiness becomes much more easy.

  1. I am depressed. It’s hard to stay positive and accepting of a disease that causes so much pain, weakness, degeneration, loss, forgetfulness, uncertainty… I could go on, but you get the point. Obviously, I have accepted my illness. I’ve had to. I would never have gotten out of bed otherwise. But these diseases are progressive and constantly change over time. So we have to constantly readjust our mindset. And let’s be honest, it has to become part of who we are. We can’t exist by putting on rose colored glasses and ignoring it. So the feelings have to be accepted and allowed to come out too. But that can cause intense fear that leaves us overwhelmed to the point of motionlessness. And I for one have given into it until my own stench snapped me out after 4 days.

  1. I am confused. And confusion is very frustrating. And time consuming. You see, my body remembers everything it used to be able to do. From dancing to walking miles to rearranging furniture all by myself carrying pieces up and down stairs. So sometimes, I still think I am capable and try to do those things expecting that I will be able to. And when I can’t, I either end up hurting myself or I have to find someone else to help me. That becomes my failure. Over and over and over.

  1. I want to give up. I know the facts about my disease. I know what my back injuries mean. I know what the future probabilities are for disease progression and pain management. And I worry about where I will end up when I can’t care for myself and who will care for me. I worry about that when I’m tired, hurting, or alone. And I’m alone a lot. And I’m scared. I think about giving up a lot too. I don’t talk about it, but I think about it. And honestly, in some ways, giving up is equivalent to being pain free again and on days like this, that’s all I really want.
In the end, when my brain gets like this, what I really need is some sort of regeneration. I’ll watch a movie, find funny fail shows on TV (I so love dumb criminals!), watch kittens on youtube, or bundle up and sleep! These “lost brain” days don’t last forever. And they’re not as common as they may seem though they do tend to come in clusters. But after 20 years of this, the silver lining seems to be the fact that by letting these days happen, you allow for a mental reset. The negativity gets acknowledged, then let go. And that’s exactly what needs to happen in the long run!