Tuesday, August 20, 2019

I really hate anxiety RA causes me every time I need to go into the office.  Voice has been ok lately but today I sound like a Muppet again. Need to go into the office to train someone tomorrow. This should be interesting. I need to sleep but my heart races and I feel generally unwell.

This is the mostly unspoken side of RA.  The things the disease has taken away that aren’t necessarily joint related. My confidence, my ability to stand up for myself. I used to be a manager. Now I work from home and panic when I have to use the phone or go into the office.

All because of my voice and lungs. Never know when my voice will go. Or when I’ll start having trouble breathing but be unable to ask for help due to being a human Muppet. Next to that, joint pain is nothing. I can deal with it. But thought of being on my own&needing help? Panic. 

I know tonight’s anxiety is compounded by weather change as well as being due for my Actemra IV infusion next week. I know my current lung and voice issues, general malaise are start of my monthly flare. I know it will be much worse later this week and next. My brain knows this and yet I still won’t sleep.

All because RA has made me a human Muppet and I need to go to the office, speak in public, endure the nervous looks and giggles when the others have no clue what I’m saying and don’t know how to react to me. I know this is my mental issue not theirs. Doesn’t make easier.

So I’m going to eat some chocolate cream cheese icing with a spoon, take some melatonin and hope for the best. And tomorrow I’m going to fake it til I make it as always. Because that’s life with rheumatoid arthritis. 

Friday, July 12, 2019

Tap tap tap... is this thing still on? 

It has been a long while since I’ve done an update. To be honest, things had’t been going well here in Rooville. 

My Orencia IV infusions failed back in December 2017. I stayed on them until approval for Simponi IV came through in May 2018. Unfortunately Simponi did not work for me. I have it a good shot and stayed on it until January 2019. In that time my disease worsened, and I became severely anemic which was causing my damaged lungs to worsen. My voice loss became permanent again. Also during this time, I was promoted at work; my workload and stress levels increased by 100%. All this to say 2018 was a very rough year. 

I was finally approved for my 4th biologic, Actemra IV and started those infusions in March 2019. I’ve had 5 Actemra infusions now, it has kicked in and seems to be working. Side effects have been very rough but I’m hanging on. My voice still comes and goes. I’d say it’s back about 50% and this is likely my new normal. 

On Monday I was able to go to my first Arthritis Aquafit class in 2yrs. It was a bit disheartening to see how much worse I’ve actually gotten since the last time I went. I’m the youngest in the class at 45yrs old. Everyone else is 65+ and were able to do so much more than I could. But I lasted the full hr. and signed up for the rest of the summer 1x/wk.  

It felt good to claim back some “normalcy”. That I’m starting to feel sort of like me again. This past year dealing with failing meds, worsening disease and severe anemia did a number on me. I came close to medically retiring, to finally saying ok RA you win. So close that I had the paperwork filled out waiting for doctors’ signatures. But for now Actemra is working and the anemia is slowly getting better. 

So yesterday I went for my post infusion monthly manicure. My treat to myself for putting up with all this crap just to stay alive. 

Today I woke up with severe vertigo. I’ve spent the day playing the “Is it Actemra side effects, RA/OA/DDD neck, migraine or stroke game?” Whatever is the cause, it is enough to show me I  haven’t won yet. My health will always be the boss. 

And then I look down at my manicured nails. Remember I am a Wonder Woman and tomorrow will be a new day. 

Saturday, February 17, 2018

We did our annual Vantine’s Day Feast tonight. Shared appetizer of Bruschetta, Tuscan Salmon over Portobello Risotto for me; Pan Seared Ribeye with Blue Cheese Compound Butter, Prosciutto Roasted Asparagus and Parmesan Roasted Potatoes for Renzo; selection of Italian pastries for dessert!

Saturday, February 20, 2016

Another year passed, another Valentine's Day. Not sure how another year has gone by...

This year's theme was Memories of Sanibel. We normally travel to Sanibel Island every May however this year our trip has been scrapped due to the low Canadian dollar.

ran into some snags on my side of the menu. My original planned appetizer of Spicy Halibut and Tuna Ceviche had to be scrapped because the fresh fish we can buy here in Rooville isn't fresh enough to make ceviche safely. Then I discovered we had planned the same side dish of Saffron Rice. I was going to change my plan to Saffron Infused Smoked Gouda Grits but due to time constraints just went with the rice.  

The boy had some issues with creativity this year. The meal was tasty however it was also a meal we eat often. He is on notice to do better next year! Both meals had the further complication of needing to be diet friendly as we are in our usual post Christmas weight loss mode. 

Without further ado, the meals were as follows...

My meal for the boy started with an appetizer of Salmon and Avocado Tostadas. This was followed by a Roasted Zucchini Ribbon, Hazelnut, Feta and Arugula Salad. The main course was Toasted Coconut Grouper with Pomegranate Salsa served over Saffron Rice. 

Loverbunny presented me with an appetizer of Flatbread Bruschetta followed by a main course of Blackened Grouper served with Grilled Mixed Sweet Peppers and Saffron Rice. 

I was on dessert duty. This year I was more creative than usual and came up with my own concoction, Key Lime Cheesecake Egg Rolls served with Raspberry Coulis Dipping Sauce. They ended up being the stars of the meal!

Overall even with the challenges, it was a lovely meal and the time spent enjoying it with my Love was the best part of all. 

Saturday, August 15, 2015

Zoodles had a fun day of new toys, walks and treats. She received 3 giant lovies and 15 balls! Steak dinner and raspberry cupcakes followed of course. Happy birthday my baby girl!

Monday, May 04, 2015

Our Star Wars puppy turned 2 today! He celebrated with a new Jolly Egg, a steak dinner and carrot cupcakes! Happy birthday my little Chewbacca!

Monday, February 16, 2015

February is here again which means it's time for our yearly Valentine's Feast! This year Loverbunny has a new job that has had him on midnight shifts for the last two weeks so this year's menu was the same meal for the both of us. I prepared Herb Crusted Balsamic Chicken topped with Goat Cheese and Roasted Parmesan Asparagus. This was served with The Boy's Mushroom Risotto. Dessert was Red Velvet cupcakes from Sweet Rebel Bakery. A much lower key celebration than past years but still a nice time spent reconnecting with each other. 
     Cupcake photo copyright Sweet Rebel Bakery

Monday, November 24, 2014

This post is part of a blog ring this month, “Let’s Talk About Your Medicines” sponsored by The American Recall Center. Please visit RecallCenter.com to learn about important drug info, such as the newly discovered side effects of Xarelto, a medication used to prevent strokes and blood clots. 

As a Rheumatoid Arthritis patient, I take a lot of medications. Currently for my RA itself, I take Orencia IV, Methotrexate, Leucovorin, Naprosyn and Tramadol plus I have a couple of options for break through pain. Add to that three medications I need for my RA induced lung damage, three more medications for eye damage caused by RA and Sjogrens Syndrome, two more for migraines, one anti nauseant, one stomach coater plus two more emergency meds for allergic reactions and it seems like all I do is take pills and deal with side effects. Two of my medications themselves are to counteract the side effects of two other medications I take. In the beginning, figuring out when to take which medication was a daunting task. Thankfully my pharmacist sat down with me and we prepared a schedule that allows me to get the most benefit from my medications and spaces them out enough to avoid any cross reactions by accidently mixing two meds that shouldn’t be mixed. This just leaves me to deal with the side effects of the medications themselves. 

Some days dealing with side effects can seem like a full time job. As mentioned, two of my medications require that I take addition medications to counteract the side effects. Additionally many of my medications have fatigue as a side effect, in addition to the fatigue caused by the disease itself. As a result I am exhausted all the time. If I don’t get a full eight hours sleep plus a two hour nap in the afternoon, I can’t function. The fatigue is overwhelming. Unfortunately there isn’t much I can do other than to make sure I get the sleep I need to function. Some of my meds cause nausea so I take a stomach coater daily  and anti nauseant when needed. Sometimes I break into hives from my Orencia or Methotrexate. It doesn’t happen often enough to warrant me changed to a different medication but it is something I have to watch for and treat as needed.

I know some people who won’t put up with any or few side effects from their medications. As a result, they are constantly changing meds in order to find a drug that a) works for their condition and b) doesn’t make them feel sicker. Some people have refused treatment completely as they don’t want to deal with any side effects. For me, after going through what I have with my disease, as long as the medication is working and as long as I can find a work around either by taking a nap, or taking anti nauseants etc., I’m willing to put up with the side effects. Some of these drugs have literally saved my life so I’m not going to let some fatigue, hives and nausea get in the way. We all have to decide for ourselves how far we are willing to go to combat this disease. I encourage everyone to speak to their pharmacist about all the medications they take. Something as simple as a schedule change can go a long away to obtaining relief from side effects.

Friday, August 15, 2014

Zoey has had a big year. New brother, new boyfriend Teddy the Schnauzer who lives next door, trip to the beach in Florida. Happy 3rd birthday baby girl!

Sunday, May 04, 2014

Our little Fluffball has grown into a 60lb Goofball full of love! Happy 1st birthday Herschel!