Where My Demons Hide

This song has special meaning to me. I can’t get it out of my head. Around the time I started hearing it excessively on the radio, was the time my body started failing me. It will forever be a reminder of when my body started showing me signs of having Antiphospholipid Syndrome. and Lupus.

I know my family and friends have probably heard me talk about APS and Lupus under they are tired of it, and unfortunately they do not always hide this fact very well. I admit it, I’m obsessed. I can’t stop thinking about the illnesses. I can’t stop researching, learning, and considering how their existence in my life will impact my future, my husband’s future, my mom’s future, my best friend’s future, everyone’s future. There’s a whole lot that they have already changed and they have only been a part of my life for a few short months.

I’m at Dr. C’s (my PCP’s office) at least once a week for my weekly PT/INR check to see how well my Warfarin is doing at anticoagulating my blood.

(And the blood’s run stale) That line of the song always makes me skip a breath. Because in a lot of ways, due to APS, that’s exactly what my blood does, due to the antibodies, it thickens and it runs slower through my veins, and therefore increases my risk of clotting, it is stale. 

I do consider my illnesses, Demons of sorts, Demons I will live with for the rest of my lives, They have symptoms, I will learn to live with, they also have anxieties they cause, and because of being chronic illnesses, they have made me have to think about a lot of things normal 30-year-old women don’t have to think about, obsessively.

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12 thoughts on “Where My Demons Hide

  1. I understood a bit about APS from your blog. I could relate to that song too, but in a different way. I guess we all have our demons inside, some visible, some invisible. Hope you pull through with your own strength and the love of others. Keep on writing (:

    Jill.

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    1. Jill Thank you! That we do, our demons are often along for the ride, and it’s up to us how we live with them. I will learn to do so in a positive way, and I will come out of this a stronger, and better person. I have Lupus and APS, they do not have me. I have to remind myself of this every day. It’s been a rough journey so far, but I’m at the beginning of it, that is something I also have to remind myself of. I appreciate you taking the time to write words of encouragement to me, it means a lot to me! Thank you!

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  2. In 1999 I had a totally out-of-the-blue life-threatening attack of something that was never conclusively diagnosed, but that responded to treatments for Lupus and Thrombotic thrombocytopenic purpura (TTP), a clotting disorder similar in many ways to APS. (In fact in the long process of trying to diagnose me, APS was a strong contender.) I was VERY sick, but I’m writing to tell you that when they finally came up with the right treatment, I fully recovered. I take maintenance doses of a drug called plaquenil (for Lupus) and low-dose ASA (for clotting), but I have never had another acute attack. There is hope that with the right treatment you and your doctors will be able to stabilize your condition to the extent that it doesn’t have to rule your life!

    The neat coincidence — I wrote a post about this very song myself 🙂

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    1. That is a pretty neat coincidence! 🙂 I will read through your posts and find it! They did the entire clotting panel on me back in November to figure out which clotting disorder it was. I’m just beginning to get my story out on this blog, it’s been a lot, and it will take me a while to get it out through posts. I am on Warfarin for the rest of my life (unless they come up with a better anticoagulant to put me on), and Plaquenil was added in January at the urgent recommendation of my Ophthalmologist because I was still having transient clotting events in my eyes. It has started to decrease my Lupus symptoms, which I was not diagnosed with until earlier this month, and I have only had a couple of APS related issues since starting it. I am confident as it has a chance to build up in my system more things will improve. I am to start another treatment as well next month, Imuran to suppress my immune system. Thank you for sharing your story with me! Fingers crossed you will not have another attack! 🙂

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  3. It’s good to research everything, to gain a better understanding and find out just what you may be up against. At least that’s why I researched at first. I like your positive attitude and how you said, “I have Lupus and APS, they do not have me.” Thank you for reminding me what I should be focusing on. Good luck in your journey and just learn to listen to your body and how it responds to different things around you. No one will know your body as much as you do. Not even doctors or “textbooks.” Take care. 🙂

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    1. Thank you, you are right, and slowly I am learning what my body is telling me, learning what the major messages are, learning what the minor ones are, I’ve also lucked into a fantastic team of doctors. My PCP knows me the best of them, he can take one look at me and know if I’m in a flare or not. The others don’t know me as well as he does, but I haven’t seen them as much as I see him, nor is my comfort level with them the same. But like you said, only I know my body like I do, and that’s the first step of learning how to live with chronic illnesses like these. You are welcome and I am glad you found my post beneficial. Happy writing!

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      1. That is very true! Or ones that realize it ‘looks’ different in different patients. My old PCP didn’t think I had Lupus because I wasn’t like his other patient who had Lupus. HMMMM. Major problem with that logic. It all worked out though. I have a solid team of doctors and more -ologists than a person should have but at least they all agree on my diagnoses, and on my treatments..for the most part.

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