Enbrel Injection Day

Today I received my four-weeks supply of Enbrel from Lumicera. Every four weeks I give them a call and they deliver my medication right to my door. Enbrel Delivery

The medication arrives packaged in a cooler with ice packs to keep the medication cool. IMG_2928(Enbrel is supposed to be kept refrigerated.) Lumicera will also provide me with other supplies if I need, such as travel cases for the medication, alcohol swabs, and sharps containers to dispose of my needles.

I use the pre-filled syringes, but they also offer an auto-injector pen and multi-dose vial. IMG_2933It’s up to you and your personal choice which you choose to use. I find the injector pen to be more difficult to use and more painful.

Enbrel is injected into the lower abdomen or the upper thigh area. I alternate the left and right side of my abdomen. IMG_2940

Pain wise the injection just pricks a little bit like any shot. If you leave the syringe out of the fridge for about thirty minutes to allow the Enbrel to warm up a little the shot stings less than when it is cold.

Enbrel® (etanercept) is a biologic / Tumor Necrosis Factor (TNF) blocker that affects the immune system. It is used to treat 5 inflammatory conditions. According to the Enbrel website, Enbrel is shown to be effective in about 3 out of 5 adult Ankylosing Spondylitis patients at 6 months. Clinical responses were seen at 2 weeks in 46% of patients, with 59% of patients receiving benefit within 8 weeks.

As mentioned above Enbrel is a medicine that affects your immune system which means that it can lower the ability of your immune system to fight infections.

Enbrel can cause serious side effects including: New infections or worsening of infections; hepatitis B can become active if you already have had it; nervous system problems, blood problems (some fatal); new or worsening heart failure; new or worsening psoriasis; allergic reactions, and autoimmune reactions.

The most common side effects include: Injection site reactions and upper respiratory infections.

For me, Enbrel has been life changing. Before starting Enbrel, I was on Methotrexate, but it made me constantly nauseous and elevated my liver levels. I’ve now been on Enbrel for about two and a half years and have mostly been able to return to normal living. I’m able to work regularly, work out, and socialize with friends and family. I occasionally still have bad days, but not nearly as frequently as I used to. I began feeling better within the first week of taking the medication, but it did not work miracles overnight. It is only within the last few months that I have felt like my old self. I was able function fairly well over the last couple years, but still had frequent bad days.

Enbrel may not work for everyone and it is not a cure. Ankylosing Spondylitis is different for everyone and the same treatment will not work for each patient. It may also stop working at which point you will need to speak to your Rheumatologist about a new treatment regimen.

For more information visit Enbrel.com

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.
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Difficult Activities — A Complied List

About a year ago, I polled a Facebook Ankylosing Spondylitis group that I belong to. (Anklosing Spondylitis for Women)  I asked them what some activities are that they find difficult/painful, if not impossible to do, because of their Ankylosing Spondylitis symptoms. What every day activities that healthy people do every day without thinking about it — taking their mobility and capabilities for granted. Not realizing that they could wake up one morning and suddenly, because of a change in their health, this basic activity has become challenging. The following is a summary of the responses from the individuals who participated in the poll.

Hygiene and Self-Care:hygienic-clipart-15

-Drying, Styling, and Brushing Hair

-Putting on socks and underwear

-Shaving

-Squeezing bottles for bath products

-Getting in and out of the tub

-Putting on bras, underwear, pants

-Tying shoes

-Clipping toenails / Painting Toenails

-Wiping, after using the toilet

-Wearing cute shoes and/or heels

-Popping pills out of foil / opening medication bottles

-Buttoning items

Housecleaning-on-cleaning-free-stock-image-and-clip-artBasic Household Activities and Chores:

-Peeling veggies & slicing veggies

-Draining pasta

-Squeezing Lemons or Limes

-Carrying groceries

-Getting food out of refrigerator and oven (or putting it in)

-Carrying groceries

-Washing the dishes.

-Vacuuming / sweeping / mopping

-Ironing clothes.

-Locking/unlocking a door etc.

-Opening jars and bottles

-Standing to cook

-Shopping trips

-Picking up stuff from floor

-Using a manual can opener

-Gardening

-Cooking

-Carrying out the trash

-Changing bed sheetsCleaning-clip-art-10

-Doing the laundry

-Taking Care of pets

-Cleaning tub/toilet

-Running Errands

-Getting items from top or bottom shelves

-Yard-work

-Using power tools

-Climbing ladders or step-stools

-Changing light bulbs

-Hanging clothes

Physical Activities:

-Being able to jump right out of bed in the morning.Clip-art-women-walking-workout-clipartPhysical-education-clipart-4

-Going up and down the stairs

-Walking

-Sitting up

-Standing more than 10 minutes

-Sitting in a car

-Getting in and out of cars

-Stepping off a curb

-Getting out of Chairs

-Standing up from chairs / toilet

-Riding a bike

-Exercising

-Bending over

-Walking dogs

-Getting up off of the floor if fallen / or sitting on ground

Parenting:

-Playing with children

-Piggy back rides

-Styling children’s hair

-Lifting a baby from a cribFamily-vacation-clip-art-clipart

-Carrying children

-Getting child in and out of grocery cart

-Pushing Child on Swing

-Carrying Children to bed and tucking them in

-Sitting in the stands to attend children’s sporting events

-Sitting through other types children’s programs/performances

Miscellaneous:

-Breathing

-Sneezing / Coughing

-Lifting a full glass of water

-Opening a bottle of water or soda

-Falling asleep

-Staying asleep

-Finding a comfortable position to sleep

-Rolling over in the bedRoad-travel-clipart

-Pressing the gas pedal while driving

-Turning neck to see while driving

-Driving in reverse

-Riding in the car for extended periods of time

-Using touchpads

-Holding on to items – things get dropped a lot

-Carrying a purse / briefcase / suitcase

-Doing ANYTHING in the morning

-Thinking clearly

Fun, Entertainment, Socializing & Relationships:

-Seeing a show or movie at a theater

-Snuggling with a loved one

-Trying on clothes while shoppingDancing-dance-clipart-4-image

-Having sex

-Going to events like rodeos, movies, etc…

-Working

-Keeping up when out with friends and family

-Attending worship services

-Performing in the choir

-Making plans ahead of time and sticking to them

-Laughing

-Writing

-Turning book pages

-Dating

-Hugging

-Shaking hands

-Attending fairs/ theme parks/ amusement parks with family

-Dancing

All of these items are difficult for the individuals who named them because of either pain, fatigue, or their lack of flexibility caused by Ankylosing Spondylitis.

Some people will be able to still do some of these things, some people can’t do any of them. Others can maybe do the activity one day, but no the next. Ankylosing Spondylitis affects each individual differently and is constantly changing.

Please feel free to share this list with friends, family, etc; to help spread awareness. Healthy individuals sometimes struggle to understand the difficulties that their chronic illness friends and family face. I hope that this list will bring light to the situation. It is also my hope that it will bring comfort to those who struggle with any of these activities as they realize they are not alone.

Do you agree with this list? Do you think anything needs to be added? Let me know in the comments!

Gentle hugs to you all. XoXo

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This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.

World AS Day

Ankylosing Spondylitis awareness Today is World AS Day! Wear your blue today to raise awareness! If you’d like a special Ankylosing Spondylitis shirt to wear for next year, check out our shop! (Kickin’ AS Store) Don’t see exactly what you want? Let us know and we’ll create one for you!

Are there any awareness events happening in your town?

There’s none here. That will have to be my next big project. Creating a walk or other event.

I hope you have all the spoons you need to do all you desire this weekend!

Gentle Hugs! XoXo 💙💙💙


Does Your Rheumy Work for the Vampires Too?

The Rheumatologist's OfficeWent in for my three-month check-up with the rheumatologist today. Well, saw the nurse practitioner this time, actually. She is always so smiley and upbeat. I try not to judge her for it. I know it sounds bad, but it just makes me think, “You are not actually that happy to see me. You don’t really know me, so… take it down a couple levels.”

Of course, I’m never really in a very good mood by the time I see her, between struggles The Doctor's Scalewith the insurance company, which then turns into struggles with the receptionist, and then seeing my weight when they take me back for the exam. (Can’t I just give you a nice estimation of my weight like I do at the DMV? Haha)

Does everyone have as many troubles with their insurance company as I do? I swear every time I go to the doctor or try to refill prescriptions something is going on with my insurance that hinders whatever I am trying to get done. It’s a conspiracy!

vampire clip artBut I think the real conspiracy lies in the lab at the back of the office where they send me every visit to draw blood. Pretty sure the doctors are working for the vampires.

Now, obviously, I don’t really think that, but sometimes you just have to find a way to laugh through your appointments, especially the blood draws. I have small, deep veins that roll and unfortunately not all phlebotomists can stick me on IMG_2841the first attempt. Them digging around chasing my veins makes me want to pass out sometimes. Thankfully today she was awesome and I barely felt a thing.

The visit was good too. It was nice to say that I didn’t have any pain to complain about, and I’ve been sleeping well, exercising, working regularly. All such a change from my earlier visits where I could barely hobble into the office.

I always feel goofy and awkward when they wiggle my limbs around and poke and prod to check flexibility and sensitivity. Makes me feel like a Marionette.

The best part of my doctor’s visit though is that my Enbrel prescription got called in to Lumicera, so hopefully my delivery will arrive at the beginning of next week. Have to get back on it so that I stay feeling good!

Do you have to go check in with your rheumatologist every three months? What do you like and dislike about your visits? Do you also think your doctors are in cahoots with the vampires? Let me know in the comments!

Gentle hugs and extra spoons to you all! XoXospoonie


The Beginning of a New Life

Where to begin? Where to begin?hi

I’ve so much to say. It’s been so long since I’ve posted.

Well… right now I am loopy out of my mind on prednisonedoctor, but so energetic. I’ve gotten so much done this week with all this extra energy it is providing! But, I will get to quit the devil-pills tomorrow when I go back to the rheumy to start my Enbrel again. Ran out of refills and it’s my fault for missing a previous doctor’s appointment, but life has just been so crazy busy!

The Enbrel has been working for me, so I’ve been trying to make up for all the lost time when I was down and out for the count.

And one of the things I’ve been doing now that I’m feeling like an actual semi-healthy human being is really taking stock of where I am in life and where I want to be – particularly in my career. So, with that being said……

#KICKINAS LOGOIn 2014, I started this blog to help me cope with my Ankylosing Spondylitis diagnosis. I have now decided to expand upon the blog and the #kickinas that I use in my Instagram posts to create a company. From now on Kickin’ AS is a website and brand whose goal is to spread awareness of Ankylosing Spondylitis and inspire and inform AS patients and their loved ones.

This website will have my blog, of course, that I will now actually start updating again to talk about my own journey with the disease; it will have links to resources, recipes for autoimmune paleo meals, tips for family and friends who want to help their AS kickinas facebook picWarriors, and an ecommerce site that sells Ankylosing Spondylitis Awareness merchandise. 10% of the profits will go towards AS research – because WE WANT A CURE!

I’ve always wanted to find a way to help my community and to somehow do something good with this challenging illness. This new business/website allows me to make contributions to my chronic illness community and I get to use my passion for writing. What could be better than joining things that mean so much to me?

Right now the blog and e-commerce site are still undergoing some construction, but I hope you will take a look around anyway!

Thank you for your continued support in all of my CRAZY endeavors.

Gentle Hugs and Extra Spoons to you all! XoXo

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