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Yes but I am…

You look good! 
You have colour in your face! 

You don’t look sick…the list is endless…

Yes, but I am sick

You see a happy, healthy woman, hiding exhaustion, pain and so much more…


These all should be good things to hear but to anyone battling an invisible you fight a “thanks” out and all the while are hating hearing it.  Yes, I don’t look sick but I am.  I am sick of justifying that I am sick.  When I was told I had Lupus it was a relief, scary but a relief.  I had all kinds of crazy horrible things happening to my body that was chalked up to my thyroid for so long because there are over 300 symptoms. Thank you to Hypothyroid mom for getting me through that and fighting my Endoricnologist for a different medication.  My thyroid laboratory results were fine but I was sick.  I felt like I had the flu 24 hours a day, 7 days a week.  No I’m not exaggerating I was sick all the time.  I was exhausted, constant low grade fevers, constant nausea, boughts of vomiting and diarrhea, migraines, constant headaches (yes there is a difference) insomnia, fatigue, unable wake up from all of the above.  I had a few episodes of going to the emergency room because of dehydration, migraines and persistent vomiting and at one of those trips I had a nurse then the doctor ask me if I had lupus, nope it had never been mentioned (for me) to me as a possibility.  Sometime after that I posted a selfie of Ranger and me to their page and was asked via direct message if I had lupus.  I knew about lupus, no not because of House because I just watched all eight seasons in February of this year, no it was because my girlie, my youngest child had Anti-DNA antibodies several years prior (still does) and we were told she could get Rheumatoid Arthritis or Lupus.  At the time, hubby and I were tested and neither of us had these Anti-DNA antibodies but my daughter didn’t have a positive ANA test.  So like every mom, I read about it and I knew what to look for in her but never put the two and two together.  I mentioned it to my family doctor and thus began my Lupus Journey.

So why does, “You don’t look sick” bother me?  Oh I don’t know, maybe because I smile through the pain, I was dragging myself to work and doing a half assed job at it getting more and more worn down.  I constantly heard, “you’re always sick, what’s wrong, why can’t you go to work…?” To them, they saw a tired, lazy, unreliable employee and coworker.  Depression and anxiety got the better of me. Anytime I was sick, I had someone come to my house to “see if I was there.” If I was sick two days, then I’d have someone there both days and on the third day they’d need a doctor’s note.  The bosses started requesting them on the first day and so the anxiety built up.  I never got time to catch up, heal and I always tried to be happy.  My personal rules are if I have a fever of 101 or higher, I’m puking, can’t get off the toilet or have not slept, I am not going to work.  It’s not safe or healthy to be working feeling sick. So if I was fighting a fever or in the bathroom or not coherent or migraines (but that’s another story) I didn’t go to work.  I’ve been off work on long term disability for over a year and a half and I still get physically ill every time I leave the house because I know I don’t “look” sick and everyone that I see tells me so.  What started this was three people in one day telling me all of the above, including my own mother.  Yes mom, I know you know I’m sick and she’s seen me at my worst and knows how bad it gets when I’m not hiding behind a smile.

when my mom said, but you have colour

 

My family for the most part gets it. What I show the world on social media or seeing me out on the rare occasion that I’m at a store and I have that smile on my face because I’m hiding the pain, the exhaustion, the fatigue and oh those red rouge like cheeks are because the lupus gives me a slight “butterfly rash”.  The cheeks being red means if you see me I probably don’t have make up on at all.

So Yes I Am Sick I just hide it really well because I have an INVISIBLE ILLNESS.

INVISIBLE

adjective

1.

unable to be seen; not visible to the eye.

“this invisible gas is present to some extent in every home”

So the next time you see me, ask me how I’m doing really, how I’m coping but don’t tell me I don’t look sick.

So how are you?  No really, how are you?  Fine isn’t an answer…

Journey with me … mini2z

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11 Comments

  • Reply Thumbup

    Must be terribly annoying.

    2016-06-14 at 19:36
    • Reply mini2z

      More than I can ever express in words <3

      2016-06-14 at 20:33
  • Reply brendaflippen

    This is more than annoying,,it’s tiring, depressing and never ending. Spending time with my mom. First time in 3 yrs. 8 hr. drive form my home. Had a couple of good days so thought I’d take advantage of it. Now exhausted, hurting, want to be home in my own bed and away from her asking every 5mins.” are you still sick? are you still hurting?How long will it be til you feel better 30 minutes?? And she wants to go somewhere well the time. Then, wants to hurry back home….😫 She is 90. And does not understand anything going on in my body. Says I’m putting on, and that I have belly ached all my live and had aches and pains.And this one really kills me.. I’m mot trying to feel better,.just imagining I’m sick. All I need to so is get up and walk it off.
    God I’m so sick of this. I want to go home. But don’t feel like it.
    Any way ,I sure understand how you feel about pair saying you dontook sick. Btw, My sister in law lupus and mom thinks she should walk it off too.
    Hope you are having a good day !! 🙋

    2016-06-20 at 12:30
    • Reply mini2z

      My gram asked me a lot of questions about lupus when I was first diagnosed. She too only knew of one person that had it and they died young. My gram and your mom were from the generation of just “suck it up”. I swear my gram is healthier than me at 92. She wants to go all over the place with my mom and is happy to go for drives. I have to say it’s great with a family that’s been supportive.

      2016-06-20 at 21:45
  • Reply brendaflippen

    You are fortunate. Yes they are from a very different ge station. My mom is healthy also. He problem is she was in a bad wreck about a year ago then fell just as she was really getting over the wreck. That has really hurt her and I don’t see her recovering from it. The only big problem she had before those two thi b.s. is her back. We both have ddd, BUT,,sne didn’t let it stop her as I have at times. She is defiantly tougher than me. She was raised hard, farming with 10 sub.I b.s. in a two bedroom house. They all had to quit school when they were old enough to work the farm. And it was share xroppi g at that. I found out a couple of weeks ago that they a?apt on straw beds and really did have to miss school when there were no shoes to fit them. I should complain about her. I feel terrible for it now. But I just had to vent. WISH I HADN’T…I love my mom and she would do anything for me.
    Its just a matter of being here too long without a break. And I miss my hubby !!!!!!
    You know the saying that company is like dish, after a days they both stink….Well I am rotten !!!😄😄I am going to try to go home Saturday. If at all possible. But I sure dread that 8 hour drive, and at least half of it is driving directly in to the sun,,😖😖, can you say. ” m I g r a I n a” ????? Hope you are having a great day…well as good as possible anyway. Btw,,how are you feeling tonight ?
    You know Some of the replies I have written to people could also be my blogs !!! Would that work ? I have a lot to another lady I right to nearly every night. She is severly I’ll with MS? And I AM SO AFRAID WE ARE ABOUT TO LOSE HER. SHE IS
    GETTING WORSE have you ever read “Two rooms plus utlities,/living in a limited world”.?? Her name is Pamela Sutherland form Scotland…she hasn’t left her house for at least 5 years. An amblulance has to come take her to Dr.and hospital appts.

    2016-06-20 at 23:49
    • Reply mini2z

      No I haven’t read her blog but will have to look for it. I know what you mean about complaining. I have to say my mom came over again this am to visit with my pups while I slept. They enjoyed having her in the backyard to play with them. The stupid barometric pressure ups and downs has been brutal. Yesterday it was 101 and today it’s considerable less but the highs and lows are killing my head and body. I feel bad because my hubby went back to work yesterday and I’m still not feeling much better. But at least my sinus infection is feeling like it’s breaking up. I’m hoping I can actually write a blog soon.

      2016-06-21 at 12:59
      • Reply brendaflippen

        Oh no, the barometer will and up killing us all? It has really hurt me today too. And the thing about it is we can’t do anything to change it. Ebem extra .ads doesn’t help the damage it does. I was rereading what I had written to you and I don’t see how you could even tell what I was talking about.😯I had so many typeos that I couldn’t tell what it said. So sorry for terrible writing. I wait til I’m in bed and read and write to people. So I’m half asleep. I think I reread them but my brain is so foggy, sure you can relate to that, and I don’t pay enough attention to what I am doing.
        Hope you feel better and get some rest. It has been not here also. I dread going back to Alabama necuse it is even hotter and the humidity is terrible. Where do you live ? I see You have very hot temps also.
        And the first sentence I wrote in the first reply to you about getting upset when people say we don’t look sick,,,should have said, That is more than annoying,,,not “this is more than annoying. Just noticed that. Sorry?

        2016-06-21 at 23:31
        • Reply mini2z

          I’m in southern Ontario Canada just south of Detroit Michigan
          My dr today confirmed sinus infection with migraine are killing me with the weather. Back in my dark room with snoring ranger. I’m sure I understand the typos as I do the same

          2016-06-22 at 13:49
  • Reply Kim

    It’s really hard – most people can’t even try to understand unless they also have an invisible illness.

    2016-08-15 at 16:16
  • Reply chronicmom

    I love the new look of your website! It’s so hard to explain to people what living with an invisible illness entails, great post.

    2016-08-15 at 19:48
    • Reply mini2z

      Thank you, work in progress, the other didn’t work with SiteGround
      Just frustrating

      2016-08-15 at 20:17

    Thank you for visiting me at mini2z ... Journey with me and I hope to see you often xx

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