Lupus: A Small Piece of my Story

In 2005 I was told that I have an autoimmune disease called Lupus.  A normal immune system just fights off harmful things like disease and bacteria, but my immune system went all “ghetto” and is constantly fighting itself. I woke up one morning feeling like I’d sprained my shoulder.  After a few days the other shoulder hurt too.  I thought we needed a new mattress.  When the pain became worse instead of better, I went to the doctor.  I hadn’t been to the doctor since my last pediatric visit.  A few days after the first blood tests, I got a call from my doctor.  Imagine my surprise and anger when he told me it was likely that I had Lupus.  Crazy doctor had to be wrong, didn’t he know that I don’t get sick?  He asked if I knew what Lupus was.  I told him I didn’t and I asked if it was fatal, because honestly, I’ve got way too much shit to do and haunting people is not on that list.  After being told it was rarely fatal, and that I couldn’t get rid of it, I went in for some more specific testing.  The conclusion was, in fact, Lupus. Within a short time, I couldn’t move my entire body, even breathing hurt.  It felt like I had acid searing through every one of my joints.  I couldn’t stand, or lift my arms, or even hold anything because my joints wouldn’t work under all of that intense pain.  I felt helpless when I realized I couldn’t even use the bathroom alone.  I pulled that whole “in sickness and in health” card early in my marriage.  I resisted medication, as I am the type of person who doesn’t like to put any drugs into my system.  It’s been my experience that the side effects can be worse than the symptoms you’re treating.  Sure your joint pain may ease up a bit, but it’s been replaced with vomiting, dizziness, explosive diarrhea, inability to urinate and prank calling the President in your sleep.  Thanks, but I think I’ll pass.  In addition to the pain, I sometimes develop this lovely rash on my face, debilitating weakness and fatigue, and a lot of other things I won’t bore you with.  I tried alternative medicines, such as herbs, vitamins, and Reiki, which was interesting but that’s a whole other blog.  I had to admit defeat and began taking medicines.  None of them helped.  I was ready to chant, see a voodoo priestess, drink toad pee or whatever it took to get relief from this exhausting pain that persisted.  I’m lucky that as of now I have no major organ involvement.  I have regular blood tests to keep tabs on my illness and treat it accordingly.  After several years I’ve finally found a few medicines that work for me, and most days I have only mild pain, fatigue and weakness, and a few other symptoms.  Once in a while I feel normal.

They call it an “invisible” illness, because there are very few visible signs of the disease.  What is most frustrating is the fact that I feel great, and then an hour later I’m laid out on the couch feeling like I’m on my deathbed, though I look just fine.  It’s hard for someone to understand, and honestly, it’s hard for ME to understand too. People judge and gossip.  I don’t like to be judged, unless it’s a favorable judgment of course.  And I don’t like when people gossip about me, unless I come out looking amazing.  There’s no way of predicting exactly when Lupus will act up, how severe it will be, or how long the activity will last.  Plans get cancelled, my to do list goes all to hell, fun things I had planned with the kids get postponed and I’m left feeling like a big baby who’s let down everyone that I care about.  I’m lucky to have people in my life that love me anyway and help out however they can.  I’ll always be grateful for these people!

Living with a chronic illness has taught me that we can’t always control what happens in our life, but we can always control how we deal with it.  My “story” does not define me.  Who I am is so much deeper than what happens to me.  My illness doesn’t discourage me, it strengthens me and gives me a whole new respect for people and our individual struggles for happiness in this life.  It can always be worse.  With a few minor lifestyle changes, the right meds, and an extreme appreciation that Lupus isn’t going to kill me, life is still good.  It’s always nice to hear from people who can relate to my story in one way or another.  It’s a good reminder that no one is ever alone.  🙂

Thanks for reading!

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20 responses to “Lupus: A Small Piece of my Story

  1. I suffer from joint pain and have been tested for lupus twice, but thankfully they’ve given me the all clear. I find that when I stay away from sugar it helps a lot with my pain. I also take several supplements ~ omega 3’s specifically, in the form of krill oil, and swear it makes a difference. I’m not one to take meds either so I’m glad I found alternatives that work for me. Of course I’m sure my pain is nowhere near the degree of pain you’re dealing with. I love your last paragraph and I’m glad you’ve found the right balance of things that work for you. 🙂 Your funny bone seems to be working extra well even if some of the other parts of your body aren’t. 😉 I’m glad you started this blog, and that I found you! Thanks for making me laugh. ♥

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    • Thank you so much for your kind words! You made my day! I’m glad you’ve found supplements that work for you! I’ve heard a lot of great things about omega 3’s. I’ve never actually tried cutting out sugar for fear that I might die without my pixie stix and fun dip. It’s something to consider though. I’m SO glad to know you here in blog world! 🙂
      Thanks again for your comment!

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  2. What!?!? Lupus never looked so sexy! Lupus is your bitch and doesn’t stand a chance against someone so positive and amazing as you. I have learned so much from you and your battle over the past 3 years. You are deffinitly the one of the strongest and most insightful women I know and I swear I only gossip about you on your good days 🙂

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    • Thank you Shaine! You’re actually one of the people I had in mind when I mentioned those that “love me anyway”. Thanks for being so supportive! I know you have your own battles going on, and I admire you for your strength and determination, among other things. I’m still laughing out loud about the gossip comment. That was too funny!
      Thanks for the inspirational comment that also left me smiling. 🙂

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  3. I never thought I could laugh while reading about lupus. LOL. BTW, I sure am glad I don’t have it…sounds painful…

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  4. I’m glad it made you laugh! I wanted to share something slightly personal without getting too deep or weighing down my blog. Clearly, my objective is to make people smile, not depress them. Thank you for the reassurance that I was able to keep things light! And thank you VERY much for taking the time to read my long ass story! 🙂

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  5. I’m so proud of you and love you so much, sweetie.

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    • Thanks Mom! I love you too, and I appreciate your love and support more than I can ever tell you. Also, there’s no tastey food in my house, so I’m coming over later, what’s for dinner? 🙂

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  6. You are a remarkable young pretty sweet and funny kiddo. Love you much brat!

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  7. At one point in my life, I was also going through some of the same experiences that you have had with a diagnosis of Lupus. I had such extreme fatigue that driving to the grocery store only a few miles away required that I stop and take a little snooze in my car in order to get back home. I was lucky to be able to work from home and would work two hours and sleep one and continued the process throughout the day. The one thing that I found to help me the most was massage. My doctor prescribed it so insurance paid for most of the cost and I found a wonderful lady who also did Reiki and yoga; so after a few sessions, I also felt like she was my healer. After 5 years, I now only occasionally have a difficult day, my ANA continues to be “thru the roof” but I live most days symptom free and have had no organ damage. Another suggestion is avoiding wheat and even better staying on a gluten free diet to reduce inflammation which causes a lot of Lupus pain in joints. The best “symptom” that you have is your determination to continue smiling and laughing….I think that is always the best medicine. Please know that YOU MATTER! Smiles, Nancy

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    • Hi Nancy! Thank you so much for sharing ways that may help alleviate these symptoms. I’ve never tried massage, but will definitely be looking into that. Also, I’ve never considered a gluten free diet. I’ll have to do some homework on that topic too. I’m so glad you stopped by and shared your story! It’s always nice to hear from someone who understands where I’m coming from. 🙂

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  8. This was hilarious! Funny people do not become un-funny because they have some dread disease or another. I am truly sorry that Lupus attacked you and that the symptoms are so horrific. Please keep writing. It will remind people that you are not just a patient, but a person – and a funny one at that. Smiles upon you!

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  9. I can relate in a sense. I’m allergic to everything it seems. I’ve had tests done, and get no rhyme or reason. I feel crummy most days, and it’s not normal. They’ve deemed that I do really have allergies, as I’ve had testing done. I was actually hoping they’d tell me it’s all in my head just so I had some direction. The other day I was searching for something and came across an article about the adrenal glands and low cortisol. Everything I read sounded just like me. So I called my doctor. The nurse was rude to me and acted as if I was stupid. “Excuse me? Cortisol levels? Ah-hem…well, we just don’t normally test CORTISOL levels..that’s…that’s just not something we normally do!” I interrupted her, “Well, if everyday you felt like you had the flu and had no life because you were like bubble boy from Seinfeld..allergic to most all foods, smells, everything, you’d request the test too!” I had read in the article that low cortisol can cause you to crave caffeine, sweets, can make you light-headed, dizzy, visual disturbances, low blood pressure (mine is 86/52 sometimes..and no one is concerned!), headaches, mood swings, erratic bursts of energy, and erratic bursts of fatigue..and finally, allergic to everything. Gee! Made perfect sense to me! My cortisol levels have never been checked. I do have a high-stress life (both good and bad stress), he said he felt my allergies were stress related…go figure! So I have to see him tomorrow to discuss the need for this sort of a test they NEVER normally do. What’s more, is adrenal problems can kill you if they go without medical attention. So here I have had this mystery plague for years where I swell up constantly, get headaches, blurred vision, dizzy, and all sorts of crazy unexplainable things, and I’ve never once been tested to see if something is wrong with my adrenal glands! I’ve lived in absolute misery now for twelve years, and the last 3 years of my life have been the worst. Waking up is horrible; I literally feel weird, and I can’t explain it. Evenings are bad too, I feel weird. And sometimes, every day all day is horrible. I recently asked God to please just show me what is wrong with me so I can get some help right before I came across this article about cortisol. I will find out tomorrow, and hopefully, if anyone else has similar problems, maybe this post will help them. I’m serious when I say that being so sick for so many years and seeing various doctor’s and getting no answers for why you feel like you are dying (literally) is depressing and frustrating. What’s more, is you are really sick and you know it’s not in your head and they treat you like you’re an idiot.

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    • Thank you for sharing your story! That’s a lot to deal with, and I’m sorry you have been going through this for so long. Were you able to get any answers today? Please keep me posted.

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      • Well, he agreed with me that after all of these years of hell I’ve been going through it made sense that it could be my adrenal glands; and so I am to go in early in the morning one day next week and have blood drawn. All of these years I’ve gone to all of these Doctors, and no one every thought of the adrenal glands, even though when they’re stressed or going bad, you become allergic to everything. Now why wouldn’t a Dr. think of that? I found out by accident! I hope this is the answer, but I do hope if it is, it’s something that can be corrected. Thanks for writing back. 🙂

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        • I’m so glad he’s looking into it! I hope you get answers and that whatever it is can be easily treated. I’m also glad that you didn’t let the one rude nurse discourage you. We may not be Doctors, but we do know our bodies best. Patients aren’t given enough credit sometimes. I’ll be keeping my fingers crossed for you! 🙂

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          • Thanks, Lisa. Yes, I have found that anymore, if they can’t figure out what is wrong, they try and stereotype you as a hypochondriac. The same nurse was attempting to imply this to me today; there is nothing more frustrating than when you’re truly ill and nobody listens to you. Regardless, I stood up to her and told her that her boss, the Dr., told me that I was not, that he felt they were real symptoms somehow brought about by stress. I even went to an allergy Doctor to rule out hypochondria. I begged him to tell me it was in my head..no no no! He said. Then I have this know-it-all nurse trying to make me feel like I’m a nut case. Anymore, Doctor’s blow you off and try and put you on antidepressants when they only you’re depressed about is not being taken seriously enough to find out what the real issue is! Hey, did you know that fibromyalgia was a made up name a group of doctor’s who got together came up with? They decided when there was a patient whose symptoms no one could figure out, they would call it fibromyalgia. No kidding. I’ve had several doctor’s tell me this. So, if you’re told you have fibromyalgia, basically, the Dr. doesn’t know what is wrong with you, and they don’t want to look dumb, and they want to appease you at the same time with an answer. Check it out; it’s for real.

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