Invisible Update

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  It’s been a really rough week on the “invisible” illness front for me.  The new medication, the increase in the another medication is kicking my butt.  I’ve been on Plaquinel for one week now – I think?  The increased prednisone has helped the rash from breaking out more but I’m still sensitive to everything that touches my skin.  My family has gotten used to seeing me in inside out t-shirt and sleep pants.  The seams are driving me nuts.  I’ve been sleeping so much but it’s not restful sleep and every part of my body hurts.  

I scheduled the dogs grooming around today’s doctor’s appointment.  So we dropped the pupalups off at Petsmart for their baths, nail trims and Ranger’s beard trim.  The girl who took them was someone I hadn’t seen before and I just get the feeling she was having a bad day or really didn’t want to deal with my pupalups.  Keely is a Lab who hates water and cries the whole way there and while she’s there.  Ranger love water, baths and would be great in the car without Keely and her anxiety cries.  I always look at their report cards and see “they were so good today” when I know that Keely has barked from the time she was there until us picking her up.  So we had over an hour to kill before the my doctor’s and I suggested going for breakfast even though I’m feeling so nauseous.  A good quick breakfast and I went to pay.  Our waitress asked if I was okay.  I said I was just tired and she said I looked hungover.  I explained I had lupus and she said, “but you don’t look sick.”  Yes I know I don’t look sick and really hate that I look hung over.  She also said something about but you’re so young.  I explained that anyone could get it and you really don’t see what it does to people.   Oh the only good part is she thought I was only 27 years old.  I wear moisturizer with SPF but that’s about all that’s been on my face except for our son’s wedding.  So I guess I’m a young looking “not sick” person…


I am seriously sick of people looking at me and not knowing I’m fighting myself daily.

The pupalups are home and fresh smelling in FALL bandannas…it’s still SUMMER.  Aren’t they just so cute?


So I’m gonna sleep…maybe until tomorrow… until then…

Journey with me … mini2z

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  • It totally SUCKS doesn’t it. All of what we go through.
    I just mentioned the Cancer and Chemo on a post. Briefly.
    Trying to be upbeat when I really want to scream.
    Tired oh so tired.
    Love you.

      • Methotrexate? Is that what mean? Yes I have been on it before. More than once for the lupus. I was on it when I had Stomach Cancer 12 years ago. I had to be monitored constantly because of my kidney. I only have one working one.
        Praying I won’t have to take it again. I am sick 24/7 with it.
        Yes, Chemo is a sure thing . They aren’t wanting to take any chances.
        Have you had to take Metrexolate? It’s one of those drugs you don’t forget.

          • Just follow orders exactly and READ all you can about it. Often….It is serious stuff. Praying it helps you
            If it wasn’t for my kidney and dialysis…I would be on it more regular . It helps with the pain.

          • Thank for the reminder. I opened up here earlier about what what going on.
            I also warned everyone I may shut myself off at times as well. Playing it by ear.
            It is just too hard trying to keep things separate. Thanks though for watching out for me.

  • “You don’t look sick” of the curse of most people with chronic disabling conditions. The fact of the matter is that most of us ‘don’t look sick’.

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

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