Tuesday, October 25, 2016

My name is Jennifer Kacey....and I have Lupus.

Words on the page. Tends to make things real seeing them in black and white. Sure makes the words in the title all kinds of real.

I'm being treated for Systemic Lupus, Sjogren's Sydrome and Raynaud's Phenomenon. Only a handful of people know what's been going on but I've finally decided to share. Because if I can help somebody else know they aren't alone in this then it will be worth it!

Gonna share some of my awesomeness to start with! Notice the oh so sexy Butterfly rash on my nose and cheeks.
Malar Butterfly Rash - Lupus

And I get these odd oval kind of rashes in random places all over my body. I'm incredibly sensitive to the sun which can make everything I'm dealing with worse.
Discoid Rash - Lupus

 Sjogren's Syndrome which is characterized by incredibly dry eyes, mouth, nose, and skin. I happen to have this inside my body too which affects my entire GI tract. Food = pain to me. If I could go the rest of my life without eating I'd be soooo happy!! This part I'm still trying to get a handle on and will see a specialist in November. :)
Super dry mouth - Sjogren's

and Raynaud's Phenomenon. My hands and feet (fingers and toes mostly) will stop circulating blood. They turn white and I lose all feeling in them. Cold is scary for me and if I get incredibly stressed out quickly that can trigger it as well. Circulation and feeling will slowly come back once I get my digits warmed up. It's something I have to be incredibly aware of because if I don't get circulation back in a reasonable time I could lose the affected parts. Boo!!!

All three are auto immune diseases which have a high probability of showing up together. I also have symptoms of Crest Schleroderma as well, cause you know, why not? Tiny capillaries burst due to enlarged blood vessels and this is called Telangiectasias. I have it on my lips, around my nose, my chest and arms. Plus my esophagus stops working sometimes, Raynaud's is tied to this and I get tiny deposits of calcium in my skin. The one piece I don't have is Schlerodactyly which I never want. As in ever. Ever ever.
Telangiectasias - Schleroderma

I've been sick for a long time. Portions of Raynaud's going back twenty five years but I just thought it was something I dealt with. Not a disease, just...me. I've been making excuses for my body for so long it became acceptable. Then I got really sick and had to completely focus on what was going on. I was dying and I knew it.

I have symptoms with pictures that go back to 2008 for these illnesses and I've been missdiagnosed or undiagnosed ever since. A lot more symptoms showed up four years ago including cases of strep that I just couldn't kick. For the end of 2014 and all of 2015 I had strep over and over again, finally deciding to get my tonsils out because I just couldn't fathom being sick any more. I met with an ENT in Oct 2015 and she completely agreed I needed the surgery. Said something else could be going on but hopefully the surgery would take care of things and I could get back to living. I had surgery in Dec 2015 after two more rounds of strep. I was even strep positive during my Tonsillectomy and Adenoidectomy. It sucked so bad. Not gonna lie. Day 5 after the surgery was hell on earth. Recovery was tough. But I just kept thinking I'll never have strep again. As in ever and that kept me going. Then I got strep again. And again. And again. I got it every month in 2016 until June when I was referred to Infectious Disease to see what else was going on and why I was getting sicker and sicker. ID ended up not helping me at all and just told me to go back to my primary doctor because she didn't give a shit but she said something that altered the course of my journey. She's the first person to mention auto immune diseases to me and she put me on steroids which gave me the first light at the end of a very long and dark tunnel.

At this point I was losing weight at a very fast rate, my blood pressure was getting higher and higher, my heart would miss beats often, trouble breathing, I was hot all the time but with no fever, my muscles were freaking out all the time and I had a laundry list of other systems. A funny red pattern on my face, incredibly light sensitive to the point I was wearing sunglasses all the time (which is why I'm wearing sunglasses in almost every picture now), mouth sores which I'd never had before, and headaches that were unreal kinds of debilitating no matter how much ibuprofen I took.

So I started doing my own research. I found as comprehensive a list of auto immune diseases as I could find and I started with A. For two weeks and hours and hours of research at night I went through the list alphabetically looking at lists of symptoms and pictures to see if I could find anything that matched. It was a no, no, no until I got to Systemic Lupus. When I found it...I cried. I poured through research and test results and pictures and blogs and I knew I had found my people. Seriously, there is nothing in the world as incredible as feeling all alone and discovering an entire community of people who know EXACTLY what I'm going through.

So you'd think I was done with my struggle and could get help immediately right?
So did I. I made an appointment with my doctor, who had been my doctor I trusted for 12 years. I compiled pages worth of information documenting what I was dealing with. Lists of symptoms I didn't know were symptoms until I found Lupus. Pages of pictures of odd things my body had been doing for so long that I didn't know were all tied together. I went into that appointment so sick I was barely functional. What did I get? A God complex. From the doctor I believed in I was met with nothing but resistance because I had figured it out. He reluctantly ran some tests, and told me to drink more water and rest. When I left that appointment I had never felt so defeated.
The next week in July I was hospitalized because my body was shutting down. There's not much scarier than knowing your body is crapping out and there's nothing you can do. Oh, no, there is one thing scarier. Knowing you're dying and not being able to get help from your doctor because you diagnosed yourself. The fact nobody else cared enough to dig to find answers for me was inconsequential. The hospital experience was less than awesome. No one could get an IV in because my veins were shitting the bed like the rest of me. I wasn't allowed any of my medication for more than 24 hours and I found out the diagnosis put on my hospital intake forms was anorexia.
Talk about one more big FUCK YOU stamped on my forehead.

On the morning I was released my doctor came in to give me the test results he'd run in his office and to tell me I was wrong. One test result was positive but nothing else lined up right so I was wrong. Oh and to tell me I was probably just depressed and he wanted to put me on anti depression meds.
Know what I did? Laughed in his face and asked him to refer me to the Rheumatology and Auto Immune Department of UT Southwestern in Dallas.
I'm no shrinking violet. Ever.
My mantra I live by is Never Settle. I have it tattooed on my side so I never forget where I came from.
I knew something was wrong, I knew I'd stepped all over his doctorly toes and he didn't want to listen. So fuck him. I'd find somebody that would.
Thankfully he brought me copies of all of my test results.
The one test result that was positive. My ANA.
Which happens to be the most prevalent test for Lupus. It was 1:80 that day which is the lowest positive result but it was positive. That's all that mattered to me.
He'd promised to run other tests if my ANA was positive and I oh so nicely reminded him of that fact. He begrudgingly agreed to run them the next week and agreed to refer me to the doctor of my choosing.
Yeah, I felt like a rockstar that day. Just a sick one.

Something else in my bloodwork that day, that he said was just fine? My white blood cells. They were abnormally low but he didn't mention that. Thankfully I'd played this game long enough to get everything in writing so I could do my own research.
Guess what another symptom of Lupus is?
You guessed it. Low WBC counts.

Five weeks later I went to see Auto Immune just as sick as I had been for months. She ran more tests, lots of what had already been run to see what had changed, and she seemed skeptical at best even with all of my documentation. I waited another week and felt nothing but defeated. Then my ANA came back again. In less than a month and a half it had jumped to 1:640. I finally...finally...had her attention. She listened to me. Really listened. She said everyone with Lupus is different. Everyone follows a different course of the disease and this just happens to be mine. And because my bloodwork was so funky I got to spend two weeks thinking I had lymphoma. That was fun. But thankfully all of that was negative and everything still points to complications of Lupus.
I'll see my auto immune doctor every 6 months for the rest of ever to see what changes and how I progress, adjust medications, etc.

I've been put on three new kinds of medicine (which brings my total to 7) to try to get the symptoms under control and have already had to adjust two of them to get me the most relief possible. Oh yeah and I forgot to mention I've had insomnia coupled with horrifying nightmares since November of 2015. Go team!

So what you ask turned everything from annoying to unbearable?
The tonsillectomy surgery.
Something that was supposed to help is what triggered the Lupus flare that has latest almost a full year. Talk about a kick in the nuts people.

Why am I sharing this now?
Because, six weeks into treatment, I think I'm finally on the road to my new normal. Some days I feel better and other days are very much not awesome.
My headaches are still horrible some days but I'm not getting them everyday which is so amazing. My joint pain is soooo much better and my muscle pain and cramping is getting better too. My pleurisy is better, my heart feels stronger and doesn't stop near as often as it has been.

I am Lupus. And I'm going to kick it's ass so hard I'm gonna be the poster child for living with these diseases.

I've always been incredibly private about my health. I don't like to whine. It's pointless and I see it as other people having to deal with my awful. I'll pass. I love being positive and seeing the amazing in everything. So sharing all of this seemed like the opposite of amazing. But I've been living with this so long with no help because I thought it was just me. I have to wonder if I'd shared some of this years ago if I wouldn't have found help then. And then I think about someone else out there going through the same things I am and thinking it's just them.
Fuck. That.
Feeling alone in this makes everything worse so I'm going to try hard not to shove it all in my little box marked "Poopy".

Since opening up to other people I've learned someone else I'm super close to was recently diagnosed with Lupus as well. The specifics of our disease are different but I have someone else that understands what I'm dealing with. It's incredible to talk to someone else that understands how I feel. Overwhelmingly fantastic.

So this is my story, the first step in a very long journey but one I'm going to rock the shit out of.

The moral of the story? Three actually.
1 - Listen to your body. If you think something is wrong don't listen to anyone else tell you they know better. Cause they don't. Going through all of this I also realized I had misdiagnosed Shingles in 2005 and have been dealing with postherpetic neuralgia ever since. Just one more thing I've ignored thinking it was just me being a special snowflake.

2 - This journey, though it has sucked ass so bad, has put me in the facility with the medical team I trust to get me well. Talk about a long ass broken road leading me to the right place. I am exactly where I'm supposed to be and for that I am incredibly thankful.

3 - Live every day like it's your last because you aren't guaranteed a tomorrow.
I'm gonna make mine fantastic!!! Who's with me?!?!?!?


PS - And I just tested positive for strep again yesterday....SMH. Pretty sure I'd like to get off this ride. Anybody got the emergency off button?!?!? :)

Decadently Yours,
Jennifer Kacey




Jennifer Kacey is a writer, mother, and business owner living with her miniman in Texas. She sings in the shower, plays piano in her dreams, and has to have a different color of nail polish every week. The best advice she’s ever been given? Find the real you and never settle for anything less.


  1. My heart goes out to you. I've dealt with migraines all my life and though not as bad,as what you're going through its still terrible not knowing if you'll wake up feeling well on any day. Your courage is inspiring. Thank you for putting this out there. Sending you hugs. Rose

    1. Thanks so much, Rose! For the last while every time I wake up I know I'm not going to feel well. I've learned to press on. Some days get better, some days don't, but getting things accomplished always makes me feel better and I can still focus on that. :*

  2. Oh Jen, I am so sorry to see what you are going through. I fight depression and have most of my life but it is NOTHING like you are fighting. I will keep you in my prayers daily forever. Would love to see you and that miniman of yours. Keep fighting !!!!! Love you !! Sharon Evans

    1. Thanks so much for the love!! Miss you crazy! Depression is incredibly rough to handle. I'm so thankful being positive comes naturally to me. If it didn't I honestly don't know how I would function. Miniman is sooo grown up now. Having to look up to him when I don't have heels on is soooo wrong!

  3. I think we all know so many cases where "medical science" and its practitioners behave as yours have. I almost lost my mom in January because they wouldn't listen until she had so many clots in her lungs she was hours from death. It takes so much courage to do what you did and push forward against a tide of experts. I am so glad you self diagnosed (happens way more than they want to admit) and didn't let anyone stop you from finding what help is possible.

    1. Soooo sorry to hear about your mum. It's so scary how much it happens. A ridiculous amount. Demanding a higher standard shouldn't be something we have to beg for yet.....it is.

  4. You should contact BA Tortuga. Talk with her about her journey.

  5. You should contact BA Tortuga. Talk with her about her journey.

  6. I'm glad you are on the right road this time. I hate when people don't listen and I'll send you prayers to keep things on the right road.

  7. I sure hope you fired your PCP. What he did to you was absolutely inexcusable. My day job is in healthcare. Unfortunately, there are a lot of people in your position. If those that practice medicine can't stick you neatly into a diagnostic slot, they treat you like your crazy. A good friend of mine complained of pain after a surgery. TWO YEARS LATER and after a lot of eye-rolling from the "professionals," she was diagnosed with lung cancer. Yeah, she pretty much diagnosed herself too. Fight for your health. You are your best advocate. Stay that way. At least now you know what you're up against. FIGHT! Stay strong and for heaven's sake, feel better! Sending healing vibes from Ohio.
    ~Kathleen Lash~

    1. Exactly!!! I became allergic to the phrase "I don't know" years ago. It's ridiculous how many people have similar stories. The only way to make sure you're okay is to be your own advocate. That's the reality. Would it be great if it was different? Of course! But perceived reality would have gotten me killed. That's not an option. Big hugs to you and your friend. We'll all do a little ass kicking of our own!

  8. So very sorry hon. You are an incredibly strong woman. If anyone can beat this, you can.

    1. Definitely ready for the "feeling better" phase of this journey!!! :)

  9. HUGS!! What a wonderful post. I share many of those lovely aspects of Lupus with you. I too, enjoy changing my nail color every week. LOL On the down side, I was diagnosed the summer with Fibromyalgia as well. I find eating an organic diet with yoga and walking really helps. The three morals to the story... I embrace and remind myself daily. I try to keep humor above the blues. I don't have time to be sick, life keeps me busy but I do know when to slow down enough to prevent some things.

  10. Your mantra of never settle is on par with mine- be your own advocate. I'm a transplant patient and a few years ago, I had a minor rejection. My doctor freaked and changed my meds. Almost immediately, I felt worse. I couldn't breathe, and I felt crappy overall. I looked up the side effects of my new med and my symptoms were listed as very rare, but possible. I went to my doc with this info, and she told me not to believe everything I read on the internet. She said I was still in rejection, and I needed another biopsy. Long story short, 3 biopsies later, with negative results, I again broached the new medicine as the culprit. She practically laughed in my face. She is no longer my doctor, and as soon as the new doc took me off that med, I felt 100% better. Doctors think they know best, but you know your body. Never stop fighting for you! Good luck!

    1. UGH!! How incredibly horrible. Someone else told me recently "they don't call it practicing medicine for nothing". OMFG isn't that right! Thank goodness you kept checking!

  11. After giving birth to my first child, it triggered my lupus. It was awful the rash itched and burned so bad nothing was helping. Even growing up into my young adulthood I knew something was wrong. I became my own doctor and earned my arm chair degree doing years of medical research and diagnosed myself. It took almost nine years of going to hundreds of doctors until final got one that listened and told me I was right. Went to Yale New Haven hospital for appointments for six months to get a final diagnosis. Yes, everybody who has lupus has its own set of blueprints so to speak on how it affects us. It is very difficult to live with but I fight through it everyday. I know I'm not alone and feeling like I'm crazy living with this illness. Thanks to all who share their lupus stories with others. Stay strong, have faith and always a positive and loving life attitude. We shall survive.

    1. Thanks for sharing your journey!!! Awful how many people have a similar story.