Category Archives: Survivor Blogger

Survivor Blogger: Beaten Not Stirred

I try to convince myself I am winning this battle. Hoping that the labs will turn around as I feel the flare settling in my joints and digging its heels in. As I start to realize that maybe the medicine isn’t working, and the handful of hair I just tossed in the trash means exactly what I think it means.

Remaining positive is hard when your physical world feels poisoned by sickness. It’s even harder when you know that things can get worse.

I went back to work this week. I felt stressed and overwhelmed, not because of the work but because of the stress of what interaction means. I felt like I was trying to find a good pace in a really thick fog. It’s work, I am happy it’s there to keep me occupied but it is no longer the most important thing in my life. The clarity I hammered my way through in my three months off drove me to that conclusion.

My body is telling me something totally different. I hung my pictures, rearranged my things, got settled. Something uproarious is happening but not in a good way, in this eerie keep testing me kinda way.

I feel beaten, unfortunately, the warrior in me hasn’t been around for quite some time. I miss her and wonder where she might be because she’s late to the party at this point. She hid behind my eyes for so long and now it really feels like letting it beat me is the only option.

Tired is the only real way to explain it because there are so many versions of the word and they all ring true.

I am physically tired because it’s a symptom of the disease. I am emotionally tired because I feel broken like a vase haphazardly glued together like I could cry for days and there would never be enough tears. I am mentally exhausted from fighting to not only concentrate but to maintain day to day interactions. I feel like my response is always a bit too dead, hollow like an echo hollering back from inside a well.

This is always a struggle. For the last year, every day has felt like some sort of struggle. There are days when my emotions get the best of me and days when I have the energy to fight back and reclaim my time, as it has been so famously exclaimed.

I have never been more tired. Sometimes my soul aches with the weight it feels it has to carry. I know there is burden in every life but sometimes I wonder, and believe, that some receive a greater helping of burden than others. Why? Who knows, I have no theories or educated conclusions I can jump to without getting to a dark place which somehow makes this my fault.

I’m trying my hardest to just let it stir me, no matter how bad it wants to beat me. If it was meant to it would have this summer. This fall or last year or another day.

I feel like as much as it would love for it to be my time, it just might not be. Maybe this is a calm before another storm, maybe it’s not. Maybe this is the way my test goes, and I’m meant to crawl before I walk.

All I want to do is run.

And not have to worry about being beaten or stirred.

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Survivor Blogger: Untilted

I haven’t written in awhile because I haven’t had much too say. I have but my journal and my therapist have been the resting place for those words. They have absorbed those very profuse feelings, and lush they were.

What I can say is I have learned. Funny things, important things, things about myself, others, life, and love.

Setbacks aren’t my kind of thing, not sure if you can pick up that vibe from the last posts but shit getting thrown off just isn’t for me.

Over the past week I somehow ended up with bronchitis. Now the already strangled words are wracked with coughing fits that send my muscles into spasms. I have been trying not to talk during the day if I can avoid it and laughing is just a wheezing mess. Sounds fun, I suppose, but that was honestly just day the last damn straw for me. After I ended up in Urgent Care and a chest x ray later, I was sent home with more medicine (as if this is something I need) and a best of luck. The coughing, the fever, the pain – plus the fibromyalgia and lupus exacerbation was almost too much to handle. I begged. I pleaded.

Then I learned to be sick.

I had very little drive, that much I can tell you. I have put little to no effort into anything I have done because to be honest, that’s all I have had. I feel close to empty, although I am, and have always been, surrounded by love and support. I have seen people’s true colors, and accepted them. That is as emotionally exhausting as it sounds, but also very necessary to heal.

In order to heal myself, I have to move on from others. Sounds like spiritual mumbo jumbo but the truth is, it’s all about being selfish.

I am not happy with the way I look – this time the medicine has wreaked havoc on my physical appearance. My face and neck still swollen, my gums hurt, my stomach is distended. I don’t look or feel like myself, and what this does is add to the depression. Which I can honestly say, had gotten better until I caught bronchitis. Then it all fell apart again.

I have learned that I don’t always have to hold it together, and that just the effort of trying is stressful. Sometimes, a person like me has to cry. I cry when I am happy, I am emotional, empathetic, and proud of that part of my personalty. I am also tough as nails, and unfuckwitable, even when I am writhing in pain begging for mercy. I have more strength in my little finger than most know.

It is ok to be scared. We are always supposed to have it put together, to be fearless. Listen, I am scared, and that is ok. I have a disease that has no cure, that attacked my kidneys until the point of almost renal failure. For the first time in five years I was rushed into treatment, I was fragile, and weak and broken – no matter how strong people wished to say I was – I was not. I was biopsied, poked, prodded, needled – and I am still scared to death. Even through it all. I know in my heart now, that until there is a cure for Lupus, I won’t ever not be scared.

I have learned that one day that fear will turn to acceptance, I can honestly say I am not there yet. I might to ever be, if we are being honest, but that’s where I should end up eventually. I do hope that comes sooner than I really expect it to – because unfortunately I fight too hard to back down – and that might what acceptance takes to arrive.

The acceptance of living a life where a cure isn’t found.

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Survivor Blogger: Controlled Steps

I try to control the sadness.

When my family and I went for a walk today, I felt it on me. Hanging, and pulling me back – not allowing those laughs that wanted to dance on the wind, to escape. I tried. I could feel something in there saying, “Here I am, but I still suck so I am going to stay over here.” I could hear it in my own head. There are times when there are whispers, even in the sun, looking up at the bluest most beautiful sky – I am just a bit bluer.

But not in the good way.

When you open your eyes and the first thing you register is pain, it is viagra pas cher a very hard realization. Some days are worse than others, but lately, everyday is agony and it’s not something that makes LIFE easy. Not one part of your life is easy. From thinking, to showering, to breathing.

Not a thing is easy.

When you’re in pain constantly, you tell yourself you won’t regret the smile you force, the hug you really don’t want or answering the question that really needed no response. You still it do it.

It comes from the people you love. We all understand that love is one of the only ways we all get through this, but when you feel unworthy of it somehow, like that healing stuff might not work. It makes you feel bad to be around the people that believe that with all their might.

I am at that point where I am starting to think about how angry I am. How young I am, and how I perceivably did just about everything right – especially through the space between these rounds of Lupus treatments. I was diligent. I ate well. I exercised. I meditated. I quieted, and mended- or tried to. I tried not to take on other’s baggage.

I tried. ( I will admit to watching too much news, getting caught up in too much shit that wasn’t mine, but fuck it – I was mad and I still am – I need time.)

Yet, still. This last month has happened.

It shows you that you only have so much control. My mind is constantly going, my husband and I spoke about it once. He said women’s number one complaint is that they can’t turn their minds off.

I agree. I think constantly. When I am not thinking I am probably thinking about thinking. This stresses me out. This stress aggravates my disease. Vicious circle.

Read Desiree’s entire blog post here!


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