Over the last two years in facing my illness I have faced many challenging moments. The struggles with the daily symptoms alone have been enough to make me want to give up at moments. The side effects to my meds are debilitating from time to times. Then you throw in a flare every few weeks or months and its down right overwhelming.
Yesterday as we were leaving my doctor’s office my best friend asked me a difficult question on our way back to the office “When do you know to take a day off because of this stuff?”. I sat for a few and then eventually was able to breathe long enough to tell him that I hadn’t figured that part out yet. I don’t know when to stop. I don’t know when I’ll be okay with my life pausing long enough to take a day or so off for a flare. My schedule right now is set up that on days I don’t have clients I mainly help out around the office and am here in case we get walk ins. It is a great set up. After my shots, I didn’t see any reason to go home and feel horrible for breaking my word about being there instead of at work. I already felt bad enough about needing to leave for the hour it took for us to run to my appt. Commitments and promises keep me moving forward. Giving someone my word, gives me a reason not to give up. It allows me to know that even when things suck really bad because of Lupus, I can still be a dependable person. It may not always be on my terms because my body gets hijacked from time to time, but I will always follow through with what I have committed to.
During flares it is almost like I go through this emotional drive to prove to myself and those around me that I’m okay, even when I’m not. There is a whole lot of frustration with the extra meds, I loathe being on prednisone, I feel yucky because of the flare, the extra pain distracts me, and the nausea is often enough to where it impacts my ability to eat. I approach each flare with the goal of doing what I feel is best for me. I’m learning quickly that no matter what you decide to do, or when you decide to do it though, there will always be criticism. Sometimes it is meant well. Sometimes it is simply because you didn’t do what the person you thought you should do. Those moments can make me feel like I have had the wind knocked out of me, and it is another instance where I consider giving up in this journey.
Continuing to fight, continuing to slowly put one foot in front of the other, and to deal with the symptoms as they come, and hope each day is better for the other is how I make it to the next morning a lot of the times. Hope gets me through the other times. When I’m all out the other two options, I fully admit I get through those moments I have to find one of my stronger support system members and let them help me. It hasn’t been an easy journey, there have been a lot of bumps and wrong turns along the way….and I have miles to go before I sleep.
In response to The Daily Post’s writing prompt: “Forward Drive.”
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.
Had you met me when I was a curly-haired little 5-year-old and asked me what I wanted to do when I grew up, I would’ve simply answered: I will be a famous writer. This remained a dream of mine throughout my childhood, through my awkward years as a teenager. I saw my way through my twenties still saying, someday I WILL be a WRITER!!!! Here I sit at 30, wondering how I’m going to achieve this goal of being a famous writer and I finally realized where I was coming up short. The words won’t write themselves.
Springtime means looking forward to Summertime. I can’t say summer has ever been my favorite season. This year,I am filled with even more apprehension. It’s my first summer with my diagnoses. This time last year, I was still healthy, I had no idea in a years time I would be sitting here at my computer, writing blog posts about having Lupus and Antiphospholipid Syndrome. Last summer, was my first summer with symptoms, but I had no diagnoses. These will be my first hot, humid, southern, god awful summer days knowing what is wrong.
For those of you who live in the south, you know what I’m talking about. The summers here in North Carolina, can be unbearable. Temps can be unbearable and days can start off above 80. Add in the brow drenching humidity and there are days we just don’t venture outside unless we absolutely have to. It’s the type of heat you can see when you look out over the horizon. You see it rising in waves. Swelling and engulfing, waiting to swallow everything.
Winter was painful, the cold hurt me with a pain in my joints that I can not adequately describe yet. Someday I will find the words. Someday I will tell you of this pain. I am a little hopeful that Summer will be less painful. I will have been on Plaquenil for a few months by the time Summer hits, and as long as the tests come back, I will most likely have started Imuran by then as well. So there is some hope riding on the warmer months.
I don’t know how my skin is going to react. Before now I use to tan beautifully. Let me rephrase that, I am olive complected, because I am part Cherokee, not because I lay out in the sun. Now when I go out in the sunlight, I develop rashes triggered by the sun, and my tail tale mark of a lupie shines across my cheeks, the ever so noticeable butterfly rash. It is true that not all people with Lupus have the butterfly rash, but I was one of the ones that was marked. As though my body decided to make it known to the world that ‘Hey! This woman has LUPUS!!!!!’ It’s okay, I’m not ashamed of it, and more often than not, I don’t wear makeup, I’m just not a makeup person, especially in the summertime, because of the humidity.
That’s enough of the things that have me a little apprehensive about summer. Now for the things I forward to for each summer:
- Our 5 year wedding anniversary is coming up in August.
- Warm summer nights, because this means on Friday nights when we go out for dinner and coffee with friends, we can take advantage of outdoor seating. I love sitting outside. It makes me feel more connected to the nature, even when we are in the city. Being a country girl, this is really important to me. It feeds my soul.
- Fireflies, they bring back such precious memories from my childhood. From chasing them when I was a small child and gathering them. To just laying and watching them as I got older.
- Stargazing, this has always been a favorite pastime of mine. It relaxes me and soothes my soul.
- More time at the parks, warmer weather hopefully will mean getting out of the house more, and taking advantage of the parks in our area. There are some great parks here.