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.
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.
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.
The giveaway runs November 23rd to December 3rd! Please share with all your family and friends! I hope you enjoy the blog and find some new blogs and products!
Flare Day Kit or ER and Hospital Must Haves
When I found myself going to the ER more frequently I threw a few things into a bag so that I’d have a more comfortable wait. I can’t do anything about the horrible chairs that my ER’s have but I like being comfortable.
Baggu bag because it’s canvass and can be washed when I go home. I always bring bottles of water and a bottle of ginger ale. I have even had a juice box at times. I know that if I have stomach problems that I can’t eat or drink but my caregiver can and the wait can be really long in my area. I always have my S’well 25 oz bottle because it’s large and keeps my water cold. Hydration is a problem for me because of constant nausea.
Colouring book and pencils in a pouch. I find it relaxing
Some hard candies because my mouth is dry and hospital air is brutal on dry mouth
A light blanket (sometimes two)
My Mophie Juice Pack – I keep it charged on my nightstand. It powers my iPad, my iPhone and both of my hubby’s too.
A long cord for the iDevices and the wall plug for the iPad because the regular one only charges the phone and not the iPad.
Book because I like reading real books and I usually have a couple on the go
Earplugs – I get overwhelmed with sounds
Chapstick – back to the dry mouth and hospitals are dry
Moisturizer because you use so much hand sanitizer at the hospital
Sunglasses on migraine visits but now I’d bring my Axon glasses because well they’re amazing.
My contribution is part of Prize pack 8 and I’ve listed what I’m including below this photo. Later on, there is two photos with all the prize packs listed. There are Eight prize packs, a Fibro prize pack and two packs that are just for the US entrants. We have over 50 bloggers and sponsors participating in this cross blog promotion for the Chronic Illness Bloggers. No purchase necessary. But check out the list of bloggers and sponsors as there is something for everyone.
What is in my part of Chronic Illness Bloggers Holiday Giveaway – Prize Pack 8?
Everything here will keep you busy at the hospital (when you can) if you’re there for a few hours or a few days. Also good for a flare day or days because we chronic illness people have days when getting out of bed is very difficult. So here is what’s in the portion of Prize Pack 8…
Tote bag – it’s washable!
Light blue plaid scarf that can be used as a light blanket by American Colors
Colouring book with Staedleter coloured pencils, Staedleter markers and pouch to put them in.
Power bank for a cell phone
Lavender hand cream
Fuzzy reading socks
Plastic Tumbler with a straw
Lemon Face mask
Green Tea and Tea (or any beverage) cup
Ice Pops mold maker and the recipe for nausea pops
I could add extras before it gets mailed out!
I’ve had fun getting the goodies for this gift pack and there is well over $150 in products for the lucky recipient of Prize Pack 8.
Good luck! Hope you enjoy checking out the Chronic Illness Bloggers and our sponsors! Chronic Illness Bloggers Network have become my friends in my journey of Lupus, Fibromyalgia, Chronic Pain, Migraines, LADA, Hashimoto’s, Gastritis, Depression, Anxiety and more important, I’ve got a great group of friends that are a keystroke away for support.
Invisible illness sucks but having friends along the journey makes it more tolerable. mini2z
Journey with me … mini2z (don’t forget that sharing is caring!)
“Be the light in the darkness. Let the world know that there is still hope. Don’t hold back anymore. You are needed. You are the change. You can make a difference. Hear me now. There is still time. There is a light that still shines within you. Stand strong my love. You are here for a purpose.” – See more at:
I’ve included some links, I really can’t say much more than find someone to talk to. Suicide my take your pain away permanently but your friends and family are left with even more pain and questions. Every underlined statement is a link to help.