Lupus CAN be predictable!


Most of the time lupus is an unpredictable disease.  It can be tricky to diagnose (did I spell that word right?), it can be hard to tell which illness is lupus related or if you are sick just cuz you are sick like a normal person would be sick.  You can have blood tests that appear normal when in fact things are really totally out of whack in your system, conversely, your blood can be totally out of whack and you can feel just fine. 

Here comes the predictable part.  Life around our house has been really stressful as of late.  Those of you who follow my blog, know that my mother in law has gone completely bonkers, my step son has been a bit of a handful, our business has been busy to say the least and I  am at my wits end.  I know in my gut that I need to slow down, that I need to take a break and rest but I haven’t been………BAM my lupus decided to slow me down.  Yesterday my face hurt.  I know strange.  Not so strange for me really.  But it did.  I just felt strange.  My skin hurt. The skin around my hair line felt strange and i was extra tired.  But nothing LOOKED out of the ordinary.  Then this morning I woke up and I had sores all over my face. 

Here’s what happens.  I get boils. They pop open and I get sores.  So, I have one on my chin and several by  my right eye.  One by my nose.  And it feels as if I have been punched in the eye.  And my hair line is all read and blotchy.  Not pretty.  And I am exhausted.  So, today I am in bed….all day in bed.  Lupus knocked me down.  It kicked me in the butt.  I guess it is what I needed to get me to slow down and take care of me!

Yesterday my husbands brother came down from Flagstaff to “help” with his mom…guess what…he was no help.  He believed her stories of us having all her money.  So that just stressed him out more.  So, I am going back to sleep.  Take care all.  Oh and…this is what lupus looks like!closed-eye-soresopen-eye-soresfull-face-sores

10 thoughts on “Lupus CAN be predictable!

  1. Carla says:

    my sympathies on your family insanity. my family of origin can really push my buttons. It is a great way for my health to go straight into the toilet, spending lots of time with them. Is it possible to be honest with your husband and let him know his brother actually makes things worse, despite his best intentions? Is there anyone at all who actually can help? because it sounds like you really haver too much on your plate.
    Wishing you relief-

  2. Lori says:

    I’ve only recently been diagnosed and am still learning about it and trying to get a footing, figuring out what its doing to me. If it’s okay, could I ask what medications you are on? I was put on Hydroxychloroquine (Plaquenil) which is supposed to help prevent it from getting worse.

    • lwayswright says:

      I am on various medications….muscle relaxants, pain meds, migraine meds, medication for depression and anxiety as well as blood pressure medication and medication for tryglicerides etc. I was on Plaquenil for a while but it just made me sick. It didn’t work for me. I have had to use steroids on occassion to get things back to normal, or as normal as they can be, as well as medication for shingles and a lot of antibiotics. Every one with Lupus is is important to always remember that and you may have to remind your doctors of that on occassion as well. I have a lot of problems with flourescent lights and the sun is killer for me. I have a lot of bladder infections and I break out in sores a lot on my body! Let me know if you have any other questions, but try to remember that every good day that you have is a blessing and the bad ones are just days that you get extra rest…listen to your body and don’t be afraid to say no when you aren’t feeling well! You need to be your own advocate and protector of your health!

      • Lori says:

        Thanks very much for your advice – it’s so new, when I have a few good days I start doubting whether there’s really anything wrong with me, then suddenly I have a really bad day or several days. I haven’t quite wrapped my brain around it all yet.

  3. Carla Ulbrich says:

    i was on placquenil fora while. i seem to recall it works mainly for joints, but not as well if you have organ involvement? I seem to also recall the side effects for that drug are far more tolerable than prednisone.

    FYI, you must get your eyes checked once a year if you’re on placquenil.

    Aside from meds, I like chi gung and acupuncture, and a gluten-free diet for getting my body to move towards being normal and being on fewer drugs.

  4. robin says:

    I have a positive ana for lupus my granmother died from it cauae she didn’t take care if herself sometimes I go into anafolactic shock for no reson my body attacks it’self . I just try to be cartilage around the sun an stay healthy I’m twenty an want to take care of my body.

    • Carla Ulbrich says:

      If it’s of any help to you Robin, I do much better when I get acupuncture and stay away from gluten (wheat/ oats/ barley), nutrasweet and sugar. challenging at first, but i am learning to love fruits and veggies and after decades, finally kicked the diet soda habit.

  5. lwayswright says:

    Robin, it took so many years for my diagnosis to happen that there were some things that I couldn’t change about how I took care of myself. If I had known then what I know now the sun would never have been something that I worshipped the way I did. I wish you health and happiness…take good care of yourself!

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