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invisible illness

    Rough Times, Blog Changes, Sleep, Flares, Good Things

     

    I hope you can tell but I’ve made some changes to the blog. I recently purchased a Chloe and Marc Theme on Etsy from a nice lady Mai, who installed it as part of purchase.  It worked out that she added the plugins that I requested.  I’m still updating a few things.  Today, after a few days of craziness getting my blog theme looking nice and a lot of headaches with remembering passwords.  The theme I bought was Chloe and Marc and it was on sale.  I love sales and they’re pretty awesome and I love the look and I hope you do too.   If you do see something that doesn’t look right, please let me know.  The whole reason I looked into buying the theme was because when I changed over from WordPress to self hosted my blog looked a mess.  I wasn’t happy where things were and I like neat on some things.  My life is chaos so this is a little part I can control with a lot of saving and closing my computer.

    I may have lupus but lupus doesn't have me

    I’ve had a rough couple weeks with chronic pain.  It’s a searing pain that is in my hips, back and legs.  The itchiness has come back and the nausea is unbearable.  My food consumption is very minute on what I can stand to eat.  Milkshakes, smoothies, citrus and toast are about all that I’m able to tolerate.  I’m an avid tea drinker and I have gone two days without any tea.

    Lupus has had me basically in bed, sleeping, not sleeping Click To Tweet

    Lupus has had me basically in bed, sleeping, not sleeping.  I try to remember me as I used to be when I was able to do anything I wanted to without wondering will I need to rest?  Can I walk through the store to get groceries?  This life of chronic illness has taken so much away from me and I wonder when I will get a break?

    I’ve seen most of my doctors in the last week and a half and it’s basically stay the course for me.  No medication changes or any tests from them in the next two weeks yeah!  I do have one more doctor appointment and its with my gastroenterologist .  I’m still waiting to see the Neurologist who is the doctor for the chronic pain and the migraines. I do have to get a follow up urine test for protein in my urine.  The fact that I had one test with proteins in my urine is concerning enough and las week was crazy, more on that in a minute.  Moods have been the same level of blah. It’s true that pain causes you to be depressed and the depression makes you think of the pain more as well.

    The world awaits turtle in Curaçao

    My daughter (who will always be my baby kidlet) last week started college in the Registered Practical Nursing program. Wednesday a call was received and she received a spot in the Bachelor of Science Nursing Program.  I text her, she says she’s in class, I try to explain you need to leave class and call the director back now!  So she went to school in the RPN and came home in the BScN program.  She sold most of her books the next day, she was also able to purchase most of the new ones she needed as well.  I did buy a “code” for over $150, yes a code, the book cost her more money but the code was an insane amount.  Her first day was the Friday and she came home happy.  I knew that she was happy in the RPN but it wasn’t her dream course. Now having a nurse to take care of momma and daddy in the future is a good thing.

    BScN
    Things have been crazy for me with doctors, lupus flare, computer issues and I hope you’re all well.  I’m hoping for some more normal days ahead, at least what’s become my new normal.

    Journey with me … mini2z

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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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    Monday Musings

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    Today has me musing:

    • I hate April.  No really, because the rain that brings the flowers has been all kinds of wet, snow, rain, snow and rain combos.  This rain makes me hurt LOTS more and it also has turned my back yard into a mud pit.  
    • It marks a week since my mommy moved out and in with my gram.  Gram just turned 92 so she needs my mom more than me right now.  My mom originally moved in in 2001 until she found a new place and then six days later I had shoulder surgery.  She never moved out.  She was afraid we wouldn’ let her come back after, but we will.  Don’t worry momma you’re always welcome.
    • I think I like this Zagg Rugged Keyboard case that I ordered from Amazon. I picked it because it could be used four ways, it had lots of reviews and the word “rugged” sold me.  Solid it is and for me the eternal klutz I’m happy to have a cheaper option to have to not buy a new laptop.  I am still getting used to it.  The keyboard itself should stay charged for two years.  I put it on my iPad and my husband wants one.  I went onto Amazon and it’s now $89.99 and I paid $95. His birthday is next month and I told the kidlets to buy him one only I forgot to remove him from our private conversation.  Oops.

    photo from Zagg’s website

    • I have only two doctor appointments this week but next week is four I think? Those are written down on the calendar on the fridge, my planner, my phone and not my foggy brain.  
    • I completed my last product review yesterday for the Oz Naturals Super Youth Retinol Moisterizer.  
    • If I put links in my posts I don’t get paid for them, it’s because I want you to see what I’m talking about.  
    • I’m going to be working on a page that explains what happens when I get products to try.  I had the page all set up on my laptop that I believe is completely dead.  Cat, one of my 2nd daughters is going to give it to her brother to look at for me.  I bought it in 2006 and other than needing a new keyboard after a tea incident it was a good computer that had to be plugged in all the time.
    • My pupalups are sleeping in every day and were only up because I woke up early.  Keely is hating the rain, she’s a Labrador that hates water, being wet but she loves snow.  I don’t get her.

    My precious

    • I was able to get this awesome Stella McCartney x Adidas black bag from a subscription box I subscribed to.  The box is $150 or quarter and the bag was for their inaugural box.  Sadly I’m going to have to adjust my sizes because the shoes were about half a size too big, the sports bra and capris were HUGE but the packable jacket is my favourite colour and it’s so light weight!
    • I was able to swap the shoes and then the pants and top to two awesome swappers and I’m getting two 1951 clutches and a pashmina in white.
    • Today we are going to Costco basically as a family.  The minions oh I mean kidlets are both going with us because we buy the food and they can shlep it to the car and into the house and then where it needs to be put away.  Even when I go without them with a list I forget something and someone is ticked.  So problems solved you all go with us.  
    • Did I mention it’s Dreary?
    • Outlander came back on last night for season two and it was awesome and that’s just not me being a fangirl but send me back in time.  I still can’t believe my Great x? Grandparents made the journey over with four kidlets and had one on the ship.  That Gr. Grandparent’s brother went with his wife to Australia. They were from Glennelg, Scotland which is near Inverness.  
    • I just received an email that I’ve been accepted into a campaign from the Chronic Illness Bloggers Network.  So excited to try this out.  You’ll find out in May what it is.  Through the Chronic Illness Bloggers I will be supplying a prize for World Fibromyalgia Day which is May 12th.  If you have a chronic illness and want to join then send in your application on the CIB page.  

    So what are you musing about on this dreary Monday Morning?

    Journey with me … mini2z

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