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I may have lupus but lupus doesn't have me

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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    World Suicide Prevention Day and Suicide Prevention Week

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    and so i kept living, suicide awareness day,

    World Suicide Prevention Day was September 10th and Suicide Prevention and Awareness Week continues

    I follow several organizations, groups and people who are all about promoting awareness about suicide, depression and anxiety.  This topic is close to my heart because anxiety and depression have been part of my journey with chronic invisible illnesses.  It took me a long to admit that this was part of what was going on with me.  I found great doctors that I can talk to.  They have made me cognizant that the pain plays a great roll in the depression.  The anxiety is mostly because you can’t SEE what I’m fighting in my body everyday and I have been judged by the, “you don’t look sick”.  I’m sharing these sites or people that are advocates, touched by suicide, suicide survivors, suffer with anxiety or depression. 

    Project Semicolon : The simple message is that the semicolon in writing means the story isn’t over yet.  My Story Isn’t Over Yet #mystoryisntoveryet The Project Semicolon website explains their beginnings;

    This began in the spring of 2013, when Project Semicolon Founder, Amy Bleuel wanted to honor her father whom she lost to suicide. Through the semicolon symbol many related to the struggle of depression, addiction, self-injury and suicide and their will to continue on. The title, “Project Semicolon,” also represented a goal – to believe that this is not the end but a new beginning.   Project Semicolon 

    To Write Love on Her Arms  is a non-profit that began in 2006.  

     “To Write Love on Her Arms began in Orlando, FL, in 2006 when our founder, Jamie Tworkowski, wrote a story about a friend and the five days preceding her entry into treatment. The story, which was entitled “To Write Love on Her Arms,” went viral.”  TWLOHA

    Jared Padalecki is a celebrity who openly promotes and raises awareness to depression and suicide prevention with his Always Keep Fighting or #AKF, Love Yourself First, I Am Enough and the sale of the products the proceeds go to several charities that raise awareness to Suicide Prevention, Depression, Anxiety and other mental health issues. The Supernatural wiki has more information on them all.  #AKF #IamEnough #LoveYourselfFirst 

    “Loving yourself is vital in the fight against mental health problems, so I want to encourage y’all to focus on loving yourselves first… each and every one of you is worthy.” Jared Padalecki 

      and so i kept living, suicide awareness


      If you need to talk about anything or have someone with you, reach out. Family, friends, coworkers may not know you’re in distress but if you reach out they will be there for you. The best thing my work did was suggest my Psychologist and seeing and talking to her is helping. My marriage is stronger, my kidlets get it, mostly.  

      Let’s may Loving Yourself and #SelfCare not be taboo, I’m not crazy, I’m keeping my fight going, my story isn’t over and I’ll be adding a semicolon to the tattoo I want to get on my wrist.

      Reach out, because your story isn’t over yet either!

      Journey with me … mini2z

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      Several Milestones Reached for this Small Chronic Illness Blogger

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      What are the Milestones?

      I’ve reached several milestones in the past couple of weeks. I just posted my 450th blog post.  I originally started this blog as a way to keep family updated when my daughter and I went to Europe in the summer of 2013.  I wasn’t sure what access I’d have to talk to family and friends and wanted to share photos.  My “blog” sort of stopped for almost a year and reinvented itself a couple times since then.  I remembered that writing in a journal was therapeutic to me but I hate actually writing so this worked.  I found that sharing my journey helps others and helps me as well.  I realized today that blogging became my transition from a “dance mom” (if I used Feis lots of people would be what’s that mean?).

      https://www.facebook.com/SportsDadHub/posts/793134954119931:0

      Photo by @sports dad Hub

      I’m done with the crazy and I think it fuelled me. I miss the socialization with friends I made with other parents, I miss the extra kidlets, I miss the travel and being gone once a month or more. I think when I slowed down I realized I’d been neglecting me and didn’t listen to my body and the cues when I first started getting sick. I know that as I stepped away and didn’t have a “project” the depression became noticeable in me and I learned to say no but I also closed myself away.
      It is strange not having most nights filled, planning the next weekend away, not planning our annual Muskegon camping/feis trip and not having vacation booked in November for the Oireachtas.
      Enjoy your time with your kids because in the blink of your eye they’re in college, working, out with friends and you see them fleetingly here and there.
      My house is quiet, my nights are quiet but I cherish all the time I spent with Travis and Sierra

      Instagram:  I celebrated the 400 followers milestone mark in the past week.  My current Instagram was started because my first one had way more posts of my pupalups.  They have almost 700 followers on their own account at keelyandranger.  I have to say of all the social media, I love Instagram best, it’s easy post a photo and a description and then share to other social media it’s so easy.  It’s also so easy to switch between my mini2z and keelyandranger.

      Twitter:  For the longest time I had my Twitter set to private because it was a the one social media that was just mine.  I used it for following news for the most part and my immediate family.  Only one of our kids uses it now, two have it but really don’t use it. I use it everyday and have found a new #tribe on Twitter  with other spoonies.  Twitter is my new love! As you can see, I hit 500 followers there.  I don’t set out looking for followers but I’m happy to have them!


      Facebook: I have to say this is now 100!  I have my blog set up to automatically post to Facebook.  I repost all posts I see from my fellow Chronic Illness Bloggers.  I also share posts from other bloggers that interest me.


      Pinterest: 1.4K – Pinterest is an amazing social media tool.  I have to admit most of my posts there are travel related.  I may be sick but I still want to see the world.  I just have to figure a way to do it with my illnesses.

      pinterest.com/mini2z

      I sold a photo on Twenty20 after an email I completely forgot I had. I uploaded a bunch of Europe Photos and Pupalup photos of Keely and Ranger #keelyandranger.  Two dollars in my Paypal is still money that goes toward the fee of self hosting my blog.  It was a photo of Ranger that was bought from the collection I uploaded.  It’s a pretty cool feeling when you sell something.
      Twenty20 sold a photo of Ranger for $2

      I’ve been having a lot more migraines.  I’m still waiting to hear when I will get the referral to the neurologist so I can get started on Botox to try and help get the migraines reduced.  Where there are migraines, my nausea just gets worse. I really believe that between being pregnant with both kids I wasn’t sick even a quarter amount of the time then than I am now.  I was given an insulin pen and a chart with how many units I need to take.  I may have to take an injectable cholesterol medication that isn’t a statin that I can’t take after trying them all.  I hate needles so giving myself injections will be interesting.  So far I haven’t gone over 9.1.  Part of my issues are I’m not eatting much because of the nausea.  I love (not) that I perplex my doctors.

      I only have one doctor’s appointment this week for me that I can remember at this time.
      Journey with me … mini2z
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