When your disease gets you down

Pain can bring out depression

Pain and Depression can go hand in hand

When it comes to chronic disease, we all have setbacks. Since last Wednesday I’ve been experiencing a flare. It’s honestly the first that I’ve had in a very long time that was quite this bad. It could be due to stress or medications or both. Compared to how I used to feel before alternative medications, this flare is a breeze. I can still lift my shoulders, tie my shoes and walk without wincing. Flares can vary so you never know what you’re going to get. For me, having Rheumatoid Arthritis can sometimes feel less of a joint disease and more of a systemic disease. For those of you that don’t know, RA can affect the organs just as much as the joints and it can mimic other diseases like Lupus.  I can see what’s happening to my joints….my fingers get more swollen than usual, but when it comes to my organs I can only guess what’s happening.

These last few days I’ve been getting up in the morning and feeling like I’ve smoked a pack of cigarettes. I don’t even know what that would feel like but I’m guessing this feeling is similar. There’s a sense of congestion and heaviness, accompanied with some discomfort to breathing especially if I bend over and especially when I first get up. Just like my joints, this feeling lessens as the day goes on. There are times that it feels like my heart is beating harder or having trouble….could it be Pericarditis? I simply don’t know. And there are moments when my sides have dull aches as if someing inside me is a bit more swollen than normal. Times like these I can only guess what’s going on. Without insurance, there is no way of knowing without going to the doctor and paying an arm and a leg.  Seeing that I can barely afford my supplements on my own, I simply can’t afford a doctor’s visit. Besides, I know the answer to the problem…..reduce the inflammation in my body and everything will be solved, including my sour mood.

If only it were that easy. I could take some Prednisone which sits in my cupboard. But after a year of trying to get off that stuff, no thanks. I’d rather not feel even more moody than I already feel which is what Prednisone would do to me.  Flares are bound to happen from time to time. I have been lucky to avoid having a flare for the past six months or so. I’m also lucky that this one isn’t all that bad. When I did have a doctor I had the same complaints: chest pain and congestion, rib pain, organ pain, and just about everything and everywhere hurt. Knowing that I have the least amount of pains now that I don’t have a doctor, it makes it all the more simpler to not worry and just keep going on with my life. A flare will eventually subside.

Extreme tiredness is another problem that accompanies most chronic diseases. It doesn’t seem to matter how many hours of sleep I get, I’m still tired. I can say however, the more I sleep, generally the less pain I wake up with. Depression is the other thing that pulls me down. People close to me try to perk me up and they say, “Don’t let yourself get depressed.” It’s hard to have that kind of self control. You go to lift something and you realize you don’t have the strength. You plan a day of activities to realize you don’t have the energy. You have aches and pains and have no way of relieving them. People want to spend time with you but you don’t want to spend time with them…..you are at a loss for words and feel like you might fall asleep in their presence. You find yourself stuttering. You spend more than your share of time in the bathroom to accomplish nothing. (Inflammation of the intestines can make you very constipated). People cook you food and you barely eat. I think faking the way I really feel takes its toll and adds to the depression. People ask on the phone, “How are you doing?” You answer, “Fine and how are you?” But the real answer would depress other people. “I feel extremely tired and sad that my weekend was taken away from me.” People don’t want to hear that so you hold it in and take one for the team, the chronically ill team that is.

What’s it like to have a chronic disease? Well, honestly it really takes it’s toll on your body and spirit,  especially when you’re going through a flare. The pain, the medications, the tiredness….none of it is easy. I can say that since I’ve been treating myself with alternative medications I feel WAY better than before, when I was on chemotherapy drugs and steroids. But even this path isn’t easy for reasons like expense, feeling alone on this particular path, and the amount of pills I have to take can be annoying and tiring.

At first I thought twice about writing an entry like this. After all, it can make people feel uncomfortable. But then I thought, why can’t I just be honest? Why spare other people and hold in these emotions?  Is this too much information? Perhaps it is but I don’t care. At least you know when you come to my blog you’ll get the truth and the real me.  Thanks to all out there, who visit.  You are my support and I appreciate you.

The Secret

This evening I watched the secret, the movie. I found it compelling. I had been wanting to read the book but never got around to buying it.

Tonight was one of those nights where things felt like they aligned. It was if the world was saying, “you’re on the right path.” For instance, my brother had forgotten the name of a restaurant and sort of found himself lost in his quest to locate it by just driving in the general area. Sure enough however, we found it. It was a beautiful place…roaring waves to listen to and look at as the city of Newport lit up the night.

I expected the secret to be what it was, which for me was an inspiration. I’ve always loved self help books and self help tapes. I once listened to a tape read by a woman who’s voice had that calming effect. What I got most from that tape was figuring out what success meant for you. On that audio tape for instance, there was a story about a woman who discovered that in order for her to feel successful, she needed to be able to take her dog into work. She ended up quitting her job and she found just that….a job that let her enjoy having her dog at her feet while she worked at her computer. This story meant something to me and that was success was different for different people.

The Secret on the other hand was a nice refresher on thinking positively, emotionally getting yourself there and asking the world for what you want (mentally). There are parts of the secret that I think could be described a little more fully or delved into a little more. For instance, their attitude on health. Although I do believe that the mind is capable of fully healing the body, even walking through walls for that matter if we were to use it’s complete capacity instead of the small percentage that we do use, I think some illnesses like RA, MS and Parkinson’s for example, are so involved….meaning that either our body is attacking itself at all times, or there are missing chemicals in our brain, that trying to heal our bodies would literally take every second of every day, for possibly an extremely long time before any change was noticed.

What I do believe however, is that by asking the Universe for what you want, you can for the most part get it. For instance, when I first got RA and started taking chemotherapy drugs and Prednisone, a steroid, I thought to myself, “There has to be a better option! There has to be an option that doesn’t have these side effects and doesn’t wreck my immune system, and doesn’t leave me prone to illnesses.” In fact, I didn’t focus on the negative but rather researched as much as I had time for on my quest for learning about my disease. It was probably half a year into it that I started taking more supplements. I read more and more about how different supplements worked in helping with inflammation. I was interested in experimentation, that was certain and I figured if I didn’t give it my full effort, I would never know.

And of course what I attracted in the process was other people who knew that I was looking for an alternative solution. I was also on the lookout in my support groups for ideas. So I think just as the Secret promises, my energy was out there and so were my positive thoughts that I would find the solution I was looking for. Now that I’ve figured out (for the most part) the solution for my RA……and I say this meaning that it’s MY solution and may not work for you, and I also realize that our bodies change over time, so I may need something in addition to it in the future. Or maybe I’ll get lucky and never need anything else. Regardless, I’m now on a quest to make my Dad’s symptoms with Parkinson’s less. And I hope of course throughout all of this, that the solutions I find help other people. And I also hope that people write in about the solutions they have found. If it weren’t for other people, I would not be on the alternative solutions that I take today and most likely would not be feeling as great as I do.

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