Nightmare…or stranger than fiction?
As I sit here, on my couch at 1:47 am, legs curled as usual, bottle of water, iPad, MTV classic, I wonder where to begin my story…do I start at the age of 12, my vaccination record has been destroyed by a flood at the doctor’s office and I had to be “re-immunized”? Or how about we fast forward to my early twenties when I had to see a genetic counselor about how my first (and only) baby might have down syndrome? (She doesn’t….and truly would not have mattered if she did, I love her regardless). Or do we go a few months later and I’m in the ER in labor and have to have an emergency c-section? Then polycystic ovarian syndrome & its side effects (undiagnosed for years). Oh, I know, how about the uterine ablation where the doctor said that he had never seen anything like it? How about the 3 additional uterine surgeries, adenomyosis, Or the total hysterectomy at age 32? Or the tonsillectomy 8 months after that?
See, I bet you thought the title was a stretch….it’s not, but now let’s get to the PsA stuff…..Oh yeah, we can’t forget the Lyme disease…..or high blood pressure, GERD, or migraines…..now I can’t remember what else I take medicine for….hmmmmm, how could I forget….CHRONIC URTICARIA, if you don’t know what that is, you may want to keep it that way. Or how about this one…..DERMATAGRAPHISM….that one is known as “skin writing” (light pressure is applied to the skin and the skin where applied turns into hives…google that one….some of the hive designs are cool).
Okay, I think we’re almost there……nope, I forgot the chronic sinusitis & allergies…and how I can’t get the allergy shots because I’m “too allergic” and the injection site turns into a welt the size of a dinner plate. The place where they took the biopsies on my arm looks like I’ve been attacked by some strange vampire. Good thing I love Halloween & my last name is “Webb” so it’s quite fitting.
Moving on, finally, the PsA. Do I even need to say anything more? Probably not, but it’s now 2:16 am and there is no sleep in sight, so let’s do this:
I’m 35 now, mother of 1 beautiful daughter, currently unemployed (not that I want to be – I loved my job, but had to give it up cuz of my stupid health). I take the maximum dose of sulfasalazine (4000mg/day which equals 8 pills), Plaquenil, (400mg/day….I think?!?), and the amazing Humira injections every other week. Plus all my other meds for all the crap listed above. Totals out to about 18 pills/day. Traveling with me is a nightmare, my bags sound like maracas from all the pill bottles, plus I’m super slow (haha, must be from the PsA) I’m always 15 steps behind my husband.
I do NOT have psoriasis. Yes, that’s right, I am one of the rare few that have PsA without psoriasis. Which is my saving grace, because of all the other crap I do have is enough for anyone. Phew, that was a lot!!!
Okay so, if you’re wondering how I keep it together??? Heavy metal, humor, and the best family ever! No joke, seriously, if you saw my playlist you would be shocked. Metallica, Avenged Sevenfold, Five Finger Death Punch, Guns n Roses, and many more. There is always a radio in my house playing comedy too, ALWAYS.
Remember I mentioned about having the best family ever???? My husband is a pastor. We do churchy stuff all week long, from bible study to Sunday service to a nursing home ministry. We help each other, which is important because there are a lot of things I can’t do, that my husband & daughter do, but there are things that I can do, which means they don’t have to. Having a support system like that is priceless….how blessed I am, even with all these health issues I deal with, I have one less thing to worry about, I have my awesome family at my side. I know that I can count on them when I have trouble walking, or I can’t get out of bed, or when I’m grumpy and frustrated about my body. They’re here for me and I can’t thank them enough….huh, maybe I should read this to them….
See, told ya that you would be shocked….so the best husband & daughter, heavy metal, humor & a whole lot of Jesus. It works! Surprised??? What would you say??? A nightmare or stranger than fiction ( which are both song titles by the way….. A7X & 5FDP respectively)?
Thanks for sticking with me and stumbling through all my babbling. It was nice to get it all out for once. Weird, I’m usually the quiet one.
Anyways, it’s now 2:53 am and I think I’m finally tired….remember don’t give up, stay strong & ROCK ON!!!!
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