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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!!!!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Btmomof3
    7 months ago

    Hi,
    While reading your post I couldnt help but feel as if you knew me and my health issues. It stinks that what we have in common is so debilitating but I am consoled by the fact that there is someone else who can empathize and relate. I need to soon get ablation done. I am scared it will lead right into a hysterectomy. I’m encouraged by your post. It helps to know that there is someone else like me who hasn’t given up completely and is doing their best to roll with punches. Btw I respond to this at 2:02 am.

  • Jdubb187 author
    7 months ago

    Yeah, still up at 2am too. Thank you for your kind words. Im glad that my story can help you. Update: PsA is worse, so i had to give up humira and went straight to infusions. I still take all those pills though. And a few more unfortunately. Keep your head up, its hard and is a struggle but you can do it!

  • Jdubb187 author
    7 months ago

    Infusions havent done much yet. Ive had 4 so far and no change. But it takes a while i guess. Thx for asking. Ill keep you posted

  • Rebecca moderator
    7 months ago

    Aw, man, I’m sorry to hear that the Humira didn’t work out. How are the infusions going so far?

  • mykidhaspsa
    2 years ago

    My daughter has URTICARIA. Her first case was at 4 years old. It’s miserable. Hurts to watch her go through it. I’m sorry you’ve experienced it.

  • Jdubb187 author
    2 years ago

    So sorry to hear that. It is a struggle & I hope that your daughter is doing well. The itching can consume you, and its hard to stay positive, but I really hope things work out for your girl….it takes a while, and you have to have TONS of patience with her doctors, nurses, caregivers, teachers & everyone else. Fingers crossed that she finds relief soon!

    Thanks for your comment, best wishes & stay strong!

  • VickiN moderator
    2 years ago

    I’m so glad you wrote this out for us, Jdubb187! Sharing our stories and struggles is cathartic in a way, and there are always people out there reading and thinking “oh my gosh, I thought I was the only one!” You are not alone, it sounds like you have a great family support system, and of course you have us too 🙂 Warm wishes and hugs, I hope there are many productive naps in your future!
    -Victoria, Community Moderator

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