This shit is real…

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I realized it awhile back and got super depressed about it.

It’s not that I didn’t KNOW, its that, in my mind, it couldn’t apply to me.

I took a blogging break because I didn’t want to write and spew depression.

And then my buddy, RA Superbitch, passed away. I never addressed it on here because I just didn’t know how to.

The anxiety deepens.

I was forwarded a blog written by Sara Frankl-gitzengirl.blogspot.com- last week. Sara has AS and is in hospice.

I read the whole thing Friday night and bawled my eyes out.

It’s just so unfair.

None us of asked for this. None of us deserve this.

There are so many things I want for myself and I am scared shitless I won’t get to because of this damn disease.

Don’t get me wrong…I know that mine is easily controlled and currently under control…but who knows what tomorrow will bring, right?

I’m feeling a lot like I did when I was first diagnosed which scares me. I am pissed. I am sad. I am oh-so-frustrated. But most of all, I am terrified.

This really is happening, isn’t it?

So what do we do now?

9 responses »

  1. It truly sucks. Every time I read an article about how X disease is Y times more prevalent in people with RA, I want to scream. Like it’s not bad enough dealing with daily pain and mobility limitations. The future is a scary place with a condition like RA that’s so unpredictable.

    The thing that helps me keep perspective the most is thinking about all those other people with conditions that are so much worse, like Parkinson’s or diabetes or cerebral palsy (or any other condition that has huge impact on one’s life). I try to think about all the things I *can* do instead of those I can’t. I can still work and make really good money as an engineer, unlike a lot of people with the level of RA I have. There are new developments happening every day in the treatment of RA – new meds and improved joint replacement options. The progress that’s been made in just the last 10 years is phenomenal.

    There are still days when I curse my own misfortune and, while I know it sounds trite, I try really hard to think of all the positives in my life to beat back the “downer” thoughts. It doesn’t always work, but that’s okay. I think we all need days when we can rage against the universe for cursing us with this dread disease and indulge in a good cry or wallow in self-pity (and eat copious amounts of chocolate) for a while. We’ve certainly earned the right, so don’t let anyone tell you any different.

    • Thanks Tula…I agree that we can still do everything, just maybe a little differently. But everytime I hear of someone ‘losing the battle’ it breaks my heart. Hits WAY too close to home. I’ve earned this chocolate tonight!

  2. Indeed this disease is a roller coaster. You are on a uphill climb right now but trust me…things will get better. I also have been reading the same blogger and she would want you to live your life to the fullest and try not to let it get you to down. She would want you to carry her in your heart and to carry her home in you. Yes, sometimes it does get us down. Of course that is normal but please do not give up hope, do not give in to this disease and do not let it speak for you. You are not your disease. You have dreams, you have wants, and you have desires. It may be that we have to do them a bit differently now but we can still do. And above all, know you are not alone in this journey. There are many, many of us out there walking the same road. And know hat you have so much to offer this world in all that you.

    • Thanks Deb. I agree with what you said she would want. It’s just that I see a lot of myself in her, can completely relate to her struggle, and am heartbroken with the outcome. Her faith astounds me. Im working on it but am not there yet.

  3. Believe me I know how hard it is to work through the loss of one of our own. I have lost too many traveling this journey with me and it rips my soul apart every single time it happens. I tend to get angry and want to go to the rooftops and scream…Find a cure! But I also realize that life in general can steal anyone of us at any given time with no rhyme or reason. And from this I have learned that I need to live every single day as if it might be my last because it may just be that and it may have nothing to do with my multiple autoimmune illnesses either. So I always try to walk with kindness and with compassion for others because in my mind and heart, isn’t that what this overall journey is about? And I carry my lost comrades with me in my heart on my journey. And maybe, just maybe we can make a small, small difference along the way.

  4. I don’t know how to even respond to this and won’t pretend to other than to say you are loved. I hope you spend as much time as possible doing all that you are able to do to the maximum. As one who has suffered a few unexpected losses of close people this year, I would say that the unexpectedness of life is all around us. Live it to the fullest that you can.

  5. I too feel lost. This is all still so new to me and I am not sure I will ever get over how much it can take from our lives and from others whom we have met along the way. It is a great motivator to live life to the fullest and to live life on our terms. The most important thing is to not let it rob us of today by worrying about the future and what might be. Know that you are not alone ((HUGS))

  6. This post really hit home with me. Urgh, I had that moment a few weeks ago on being told I had to have my jaw operated on because of wretched PA. Sometimes I think I am just moaning about a sort of imaginary annoying friend called arthritis who irritates me daily and then every now and then a get a wake up call – it’s real and it sucks.

    I think it is ok to feel scared and depressed sometimes but as so many others have said, none of us are on our own. It’s a pile of poo but we can all fight it. It’s brave to talk about it all being a bit much sometimes – I think if you can acknowledge that you can get begin to get past it so much more than if you try to keep going.

    PA has actually given me some positives. It’s made me nicer, calmer and more patient (except when I’m in pain and then I’m like a vicious little chihuahua). It’s started me on a new career path and given me a whole new blogging hobby.

    I hope that chocolate helps, I might go get a bar to keep you company ;)

    Kit

  7. Yep, just went through my blogroll today and discovered those two had passed away. I don’t quite know how to handle that stat. Odds are not in my favor. Scared, lost and frustrated tonight.

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