AHH, such relief. May is OVER!! May is such a busy month for me. It’s my birthday, anniversary, Denver Arthritis Walk, then you add on Mother’s day, and well, it just gets crazy. Well, it’s been awhile since I’ve last posted anything and there has been A LOT going on. However, what I really want to focus on is the Denver Arthritis Walk and my latest Remicade Appointment. The Denver Arthritis Walk was on Sunday, May 16 in Washington Park and boy was it a SMASHING hit! I love the Walk.
Well after my latest infusion of Remicade, my energy has definitely INCREASED. I’m thrilled about this!! Since my last infusion I’ve still had an increase in pain especially in my lower back and hip along with a lack of energy for the last six months. Dr. Rheumy and I decided to increase my Remicade infusion to 5 vials instead of 4 and after learning about my minimum vial amount at the last appointment, I felt much better about increasing my dosage. It’s time for change and since I’m now that this new Infusion Center, with new doctors, I’m ready for someone to LISTEN TO ME! Yes, my back hurts!! My pain tolerance has increased so much where the pain is deemed to me as NORMAL. What kind of sick person am I? Oh wait…an arthritis sufferer, who has been silent for far too long!
After doing some further movement tests, i.e. – stretches, I was told that I was LIMBER. He couldn’t believe that I could still BEND OVER. He was shocked that I could SQUAT. He was even more impressed when I could STAND UP STRAIGHT. Well, at least the drug has been working over the last NINE YEARS, but I don’t see myself as LIMBER. I’m not limber compared to where I was 4 years ago. I was dancing, standing on my feet for 12 plus hours without any kind of pain. That’s my goal. I think it’s an outrageous goal, however if you know me, I’m outrageous as I look to shoot for the stars and keep on going. Sometimes I’m lead into disappointment, other times, I SUCCEED! Here’s to hope?
However, there is a downside to some of this great news. Dr. Rheumy wants to see me in 4 weeks instead of the new 5. FOUR WEEKS FOR EVERY INFUSION!! Now this is crazy. I thought for sure he was going to say “Well, looks like 5 weeks didn’t make much of a difference so, let’s increase the dosage and make it 6 weeks”. WRONG!! Instead he said “We’re going to increase your dosage to 5 and see you every 4 weeks since that’s the time you start seeing an increase in pain. CRAP! Well, I guess that’s to be expected after being on this drug for NINE YEARS!! Did I mention that already?? However, I was hoping we could of possibly gone back to 6 weeks. That MUCH drug in my body kind of makes me feel sick and not normal.
Lately right after my infusion, I come home, take it easy and rest. Okay, maybe not. It usually results with no dinner and an early bed time because I’m SO exhausted. It feels like I just got done running a marathon or on my feet for 12 hours. I’m just exhausted and wiped-out. However, this last infusion wasn’t the case. I WAS SHOCKED! How is that even possible with more drug in my body that I’m less tired? My back felt relaxed, I was in an ease. Hubby and I did some chores and went SHOPPING! Okay, not exciting for me shopping, like clothes. Just boring, hurts-your-body-large-concrete-building shopping. Yup, the a-typical shopping we do in MY family. Home Improvement and Grocery shopping. BLEK! However, I made it. I was shocked!!
The next morning I was going to go try Yoga. It’s a free yoga class outside in the park every Saturday with the lovely summer sun warming up my body. Absolute BLISS! Okay, now after all of that SHOPPING, you would think I wouldn’t of been able to get up, right? WRONG!! I was so motivated that I hopped out of bed, got dressed quickly, even put sunscreen on at HOME and dashed happily to my class. AM I CRAZY?! I never just hop out of bed. It’s usually a half hour snooze time, along with a 15 minute stretch in my bed. I WAS SO SHOCKED! Yoga, of course was AMAZING. I didn’t feel cold all day, like I usually do after my infusion. I felt relaxed, refreshed, and ready to go.
I got back from Yoga and had a full weekend ahead of me, including a Bridal Shower, dinner with my family, and gardening. Even after my fun-filled weekend I was still able to get up twice that same week and RAN! I RAN FOR A MILE ON BOTH DAYS!! I know I probably shouldn’t be running, but it feels so good to get back to it. I’ve missed it for so long! With all of this good body karma going on, I decided a food diary again. I want to know what I’m eating, change my lifestyle of habits, okay, lose some weight, but also track my activity level. This way, at my next infusion appointment I can talk about the foods and exercise I’m doing with my Dr. Rheumy. Now, I haven’t cut out anything out of my diet like gluten or dairy, but one thing I have cut out completely is soda. I used to have a Coke once a day. Yes, the regular Coke, with all of the liquid calories. YIKES!! That’s 150 calories of liquid. So, I cut that out, and added in more water. YAY! Go me! What I am doing to compliment this accomplishment is I’m counting my calories more accurately which results to eating more quality food.
It’s too early to discuss how I’m doing, but I’ll definitely keep you informed! Here’s to a new challenge with a great start!