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invisible illness

    Saying Goodbye to 2016 and Welcoming What Lays Ahead

    Goodbye to 2016 and Welcome to the New Year

    happy new year Curacao swim with a wild turtle

    It’s a new year but I’m far from being well.  I will look back and see some positives that 2016 brought me.

    A new Rheumatologist who is great.  She treats me like a human being and not someone just to see how does my new office look or why are you here.  That still makes me shake my head.  I’ve learned to space my appointments out as if I have more than one a day and more than three a week it gets to be way too much for me and my drivers.  I finally got a long awaited referral to a neurologist just days before Christmas.  I had a call early on the Monday morning and thought it was for another appointment on the same day, nope it was an appointment that I had NO clue about.  I arrived early and thankfully as the paperwork was more extensive than ever.  I was in with the neurologist for almost an hour.  He did say that the botox would help but because of my insurance rules I had to try one more medication for two months first.  So I’m on that medication until March with a return visit booked.  I’ve also been put into the waiting game list for an MRI of my head.  The Dr. did say that I’d need the botox in several spots including the spot where all my migraines start, stay, basically live, also in my neck and in my jaw on the left side.  The jaw part was surprising.  I have some jaw cracking and I know I grind my teeth but getting shots there surprised me.

     

    The excellent news is the head MRI is very early March at 7pm but that is so quick for an MRI where I… Click To Tweet

    Some good things in 2016 were my daughter getting into the Bachelor’s of Science, Nursing which is her dream job. Getting the okay and you must get away from the doctors.  Getting five (I think I’m at five?) doctors to agree that a trip would help with relaxation and my severe anxiety. Then getting the okay to spend a couple weeks camping after a couple months of both the hubby and me homebound for over two months, me with my illnesses and him with his broken leg repairs.  The couple weeks in Sauble was almost perfect.

    My mom moved out of our house and in with her 92 years young mother.  It was time and gram is happy to have her there with her.

    I’m still sick and take it day by day and hubby’s leg still isn’t right.  We worry that he’ll be needing to get the plate and screws out as we think it’s an allergy to the metal.

    We need to get our children who live in the house to do more around the house.  Hubby is working, I’m not able to do much with having more bad days than good so they need to step up.  Yes, school and work come first BUT family and their home comes before friends and fun and way too much sleeping.

    My Favourite Photos of 2016

    I don’t make “resolutions” as I will always break them.  I will list some things I’m going to work on doing better, though:

    • budgeting – meal planning, cut back on spending (subscription boxes)
    • blog on a sort of set schedule for me – sponsored blogs yeah they get done but personal ones go on the back burner
    • walking and yoga – again it’s not something that I can schedule but I’d like to have someone walk with me with the pupalups and get to yoga once a week
    • keep getting better rest and sleep – it has improved but the painsomnia can’t be helped
    • not feel guilty for what I can’t do – that’s a hard one but working on it every day
    • try to get my nails in order, take medications on time (more on that in a couple months)
    • get to the dentist to get the work done that needs doing

    I hope you’ll continue to be with me on my journey with lupus SLE, migraines, chronic pain, fibromyalgia, diabetes type 1.5, painsomnia, depression, anxiety, gastritis and whatever else gets thrown my way.  

    I’m going to #alwayskeepfighting because #mystoryisntoveryet ; Click To Tweet

    So keep fighting with me because we have so many stories to tell!

    Journey with me … mini2z

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    Honey Colony Equalibrium Energy: My Trial With Superfood

    I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

     

    Honey colony equilibrium

     

    I received a jar of Equilibrium Energy from Honey Colony over a month ago.  It’s taken me so long to write because I’ve been in a flare, messed up blog site and computer problems.

    The package arrived to me safely and very well packaged.  The jar is 2.3 ounces or 66 grams.  The jar is a reusable Biophontonic Violet Glass jar.  (I had to look that up! It means the jar protects the contents from light).  I usually take photos of boxes as I’m opening them but for some reason I didn’t.  Packaging to make sure a product arrives to you is important and the package was the appropriate size.  Not an oversized Amazon box!

    So what is it?

    At the core of Equilibrium is raw honey. Eleven other potent superfoods are added—each one organic or wildcrafted, boasting numerous health benefits. The total 12 ingredients bring harmony to a life that may face stress, toxins, and negative energy.    Source: Honey Colony

    Jar of Equalibrium Energy

    So what’s in the superfood besides raw honey?

    The 12 ingredients are:

    Active Natural Prebiotics
    Phytoplankton
    Blue Algae
    Medicinal Mushrooms
    Double- Directory Adaptogenic Herbs
    ORMUS
    Ginger
    Organic Turmeric
    Raw Honey
    Bee Pollen
    Bee Propolis

    Honey Colony has a post about the 87 benefits of the ingredients in the Equilibrium Energy Superfood.  There is so much information on all the 12 ingredients on their website that I can’t do it justice in a blog post.

    Label of Equalibrium

    Photo Source: Honey Colony

    I started taking it right away. It is a dietary supplement and not a medical product. The directions are that you take a teaspoon in the morning on an empty stomach. When I wake up I have to take an antinauseant immediately and wait for it to take effect. I found that taking the spoonful and then having my morning tea was best for me. Some people have recommended having it in your tea. I was a afraid that if I did that I wouldn’t get all the benefits if it was diluted.

    I am very sensitive to textures and found it hard to take for the first two days. After that, I was able to take the spoonful and not complain about the texture.   Anyone who has ever been with me eating and seeing me freak out about mushrooms will know that I can’t even stand the thought of mushrooms even if they were puréed.  It was sweet and gritty kind of like the centre of a fig bar.  That’s the only way to describe it.  It looked like black caviar when you first look at it.

    Honey Colony Equalibrium Energy superfood

    Did it work?  I don’t know.  I was taking it at time when I was having a lupus flare.  My nausea was on the top level for me.  A couple days all I had was the spoon of the Energy with tea or ginger ale.  So some of the days due to my nausea it truly was the only food I had.  I didn’t have to take any Benadryl when I was having a spoon everyday.  I just realized that as I am writing this blog post.  That’s a pretty big benefit in itself.

    Will I buy it for myself?  At this point, I can’t afford it on my long term disability reduced wages.  I wish I could because I would like to try it for longer.  It’s a pretty powerful jar of goodness and you only have to take a teaspoon of it daily.  Check out Honey Colony  at http://www.honeycolony.com/  Prices for auto ship are less expensive than buying a single jar as are buying them in a three pack is less expensive.

    I hope you enjoyed my review of Honey Colony’s Equilibrium Energy Superfood.

    Journey with me … mini2z

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    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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