Friggin' IgA $#!T
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This is Autoimmune…
I normally try to keep my posts humorous and hopeful. Today I wrote something for myself, and I wasn’t going to share it here. It was negative and full of woe, because some days aren’t great. So I get it out in a way that works for me, in this case written words. As I have said before it is ok to not be ok, to have an off day. You can spend some time there if you must, nurture yourself, but then put on your big girl pants and move on. It has become second nature. Get up in the morning, make myself something to eat,sit down, swallow a…
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Ode to Prednisone…
Inspired by Dr. Seuss and Prednisone I wrote this little poem about a month ago, while “patiently” waiting on an oil change that was taking way to long. At the time it distracted me from the very real side effects that had started to effect me after being on multiple medications for a month. Most notably in that moment, I was starting to get just a tad pissy. The night before my daughter read Oh the Places You’ll Go by Dr. Seuss to me, still one of my favorite kid books. Fueled by frustration and silly rhymes, I banged out my Ode to Prednisone…I share it now because some days…
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Reminders and the untold future…
I was reminded today by one of my friends, my work mom (aka Mama Ware) if you will that it had been awhile since I posted a blog. I had my excuses-I was busy, I was tired, etc. The truth is I have been feeling a little lost. I have allowed this illness to kind of become my identity, and I have lost myself a bit. Pieces of myself like a puzzle cast about, and I am left trying to retrieve them and see if they still fit. I feel so far removed sometimes from who I was, that I fear I won’t get back there. I guess the reason…
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It’s ok, to not be fine…
As if no time has passed there you stand old friend. There may be more grey hairs and wrinkles between us, but at last that same smile is same as it ever was. The same goofball things still dissolve us into fits of giggles, bringing me back to the girl I was. We catch up about kids and work. We retell stories. We are mystified by how much time has passed since we saw each other, and vow not to go so long again. We lie! We recite the glossy versions of our lives, like we are reading from a script. We dodge the truths that may bring down the…
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I have a plan!!
I took a deep breath, unaware that I had even been holding it. As the doctor told me “your kidney functions have improved, and you won’t need chemotherapy”, I felt lightness enter my body once again as he continued explaining the labs and treatment plan. For the first time I had a firm treatment plan. Yes it involves months of heavy duty medications, countless lab visits, and routine visits with the doctor who thankfully unraveled it all before my kidneys completely gave out on me. I have a plan!! I like a plan, it puts me in control and provides an end game. I am a list maker, instilled by…
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Oh hello ankles, nice to see you again…
Before I got out of bed this morning I pulled back my covers and saw them with my own two eyes-clearly defined ankles. I almost took a picture to prove they are still there. Knowing that it will not be long before they are filled with fluid and resembling something more sausage like in nature. It doesn’t take long before edema settles in. I showed my sisters my ankles last night, and I was surprised by there shock. It’s strange what becomes our norm. My sister compared them to a Temperpedic mattress, and it is a pretty accurate reference. For those who haven’t slept on one of these mattresses, when…
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Keep your chin up girl…
Three simple words-I need help. They lay like molasses on my tongue, not wanting to escape my mouth. Fear that once they escape into the universe I will have to give up the shield of independence I carry with me. I don’t believe that this is unique to me, but rather a plague that effects women in general. We don’t ask for help, and we don’t put ourselves first. This has become abundantly clear to me recently, in both myself and some of my favorite women. Why do we do this ladies? I can’t tell you how many projects I have started or attempted to tackle because I didn’t want…
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Moon face, my ass!!
Moon face, my ass. How do they call it “moon face”? This nasty side effect of Prednisone that causes your cheeks to explode and your neck to become non existent. First it really is not limited to just your face. Your stomach gets bigger and if you’re lucky you develop a buffalo hump. Luckily I don’t think I have the buffalo hump, but hey they treatment is long and I am only 4 weeks in. Along with the appearance changes, we have the mood swings and lack of sleep to add to the repertoire of loveliness. Honestly the term ‘moon face’ does little to accurately describe what this really feels…
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My body is attacking my kidneys!!
So maybe a little dramatic, but actually a very accurate statement. You see I have been recently diagnosed with an autoimmune disorder, IgA Nephropathy. I am a nurse and still didn’t know much about this disease prior to being diagnosed. You see I hadn’t been feeling well for quite awhile leading up to this. A list of vague symptoms and I failed to connect the dots. Prior to this I was very active and somewhere over the past year noticed that I just didn’t have the same energy or exercise tolerance. I got intermittent swelling in my ankles, but I contributed that to the heat or overuse. I was always…