Archive | March, 2011

Flares, Side Effects and Kick-Off

11 Mar

Well, it’s been a long time since I’ve had a flare. Unfortunately, the streak is over. On Wednesday, it came back and let me tell you, it came back with a vengeance!!

Usually my mornings start off slower than the non auto-immune person does. I have to start my morning with 45 minutes worth of alarm and the famous snooze button in order to get up in time like everyone else. I don’t have the luxury of setting the alarm once and then getting up. All planning, all in advance, always 45 minutes. However, Wednesday, it ended up taking me an hour and half to actually get out of bed. As I rolled over to turn-off the alarm clock, I noticed I couldn’t open my left eye. As I squinted through the bedroom, trying to avoid obstacles, I finally made it to the bathroom, grabbed a wash cloth and slowly worked my way into opening my left eye. Then, there it was, evidence I didn’t have a great night, my left eye was as bright red as the Target logo.


As my morning continued, my body decided to hate me even more. I had a flare in my lower back AND in my left hip. Then the pain that was caused in my hip annoyed and affected my left knee. The song that I used to sing as a kid rang through my head all day!! You know the one…‘the ankle bone is connected to the leg bone, leg bone is connected to the thigh bone’. Who knew, that was so true!! Especially with those who have connecting arthritis issues.

By the time I got to work, I was in too much pain. It was one of those days where you arrange to get up to do multiple things all at once, instead of getting up constantly. When I finally saw myself in the mirror, my eye turned into a darker red. As quickly as I could, I returned back to my desk and cancelled my Remicade appointment and scheduled it for two weeks later and then re-scheduled my eye appointment to be as soon as possible, which was two days later. Not great, but something I could manage.

Well, today, is Friday and this morning, I visited my eye doctor. We’ll call him Dr. Eye (cute, huh?!) Anyway, Dr. Eye said it is the same infection that I had a month ago. Apparently this is a chronic eye condition and I will be stuck with it because of my auto-immune disease, ankylosing spondylitis, but even more so because I’m on Remicade.

So, here I am, having a ton more side-effects from Remicade and taking a TON more medication just to bare off the side-effects of the Remicade.

I think we’ve finally figured out a solution, but the only way to know is to continue trial-and-error at least for a month, but probably longer.

Because of the Remicade, some of the side effects are sinus infection, chronic dry eye, and chronic dry skin. SUPER!!

So, here are the medications I’m now on daily, along with what I’m doing to keep the rest of it at bay!

~ Nasonex at least once a day to worn off any sinus infection

~ Restasis to worn off any dry eye complex.

~ Punctum Plugs to be placed into my tear ducts every 3 months

~ Baby oil every morning to my entire body just to try and retain SOME moisture.

~ 20 pills to aid in vitamins and minerals I’m already taking naturally (naturally = what I eat)

~ 4 pills for other medication purposes

~ Currently an antibiotic for my left eye

Wow, wasn’t that just super fun!!  However, I think the reason why I’m doing so well is because I have a positive attitude towards my health. It is what it is. I write a health progress report daily and bring it into all of my doctor appointments. How else am I going to cover all of my pain and symptoms, let alone remember thanks to the Brain FOG that comes with flares, in a single 18 minute doctor appointment.

So, with that being said, I’m really excited that we had our Arthritis Kick-Off last Sunday. I’m proud to report we had 75 people attend. A first for our Denver area and we received a lot of fantastic compliments. We changed it up a bit this year. The committee contacted each team captain from the previous 2 years and invited them to sign-up for the walk, but also to invite them to the Kick-Off. Then, we made sure our honorees had advance notice so they could invite their famly, friends, and co-workers. I think it also helps having a Medical Honoree who is a well known doctor in the Denver area. Most of his office came on Sunday and it was amazing to see professionals in the Rhuematology field get so excited about our walk!

The kick-off was also based around March Madness! We gave away a couple of prizes for best Team Spirit, number of team attendees, best nerf shoot, and most raised. It was amazing and I just know that the Denver Arthritis Walk will be even more amazing this year. The love and support just continues to grow!

I encourage you to donate to the Arthritis Walk!! I’m currently hosting a team and would love it if you joined my team and raised funds, supported my efforts, consider a donation or all of the above!! It’s a fantastic event, for a fantastic cause! 80% of your donation will go directly to help fund research, educational programs, a cure and so much more! So, if you’re sick of the way you’re feeling, tired of all the medication, or wish there was another one you could try because you’ve tried all of them, then please consider donating today!! I only hope that in my life time, I will see a cure to this awful disease, but if its not possible, then a cure to all the Side Effect Madness!


You can support me, the wonderful cause, and all the other #spoonies out there by visiting