Category Archives: Rheumatoid Arthritis

Oct 07 2012
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Fun for Couples, Rheumatoid Arthritis

Day 13: Wedding Video

Today is special because it marks six months of marriage for my husband and I. To celebrate, we watched our wedding video. It is ten minutes of footage that covers the whole day/night. Our amazing friend put it together for us after filming non-stop on three different iPhones. I love everything about this video. It captures perfectly a time in my life when I was so completely happy. The first time I saw the video, my husband says my jaw dropped and just hung open, tears filled my eyes and I did not move until it was over.

Tonight, cuddled up on the couch, my husband and I watched it again, once in silence and then once again. The second time we talked through the whole thing, commenting on how nice everyone looked, wondering why everyone laughed when we exchanged rings, and noticing how easily the evening dissolved in to crazy dance party. We also noted how well I move in the video vs. today and how long we were on our feet. Today, I would not be able to stand for the entire duration of the ceremony or dance so freely.

While it might seem sad to think about that, I actually find it hopeful. Things did change quickly in the last six months. Hopefully they can change again, for the better, in the next. But even if they don’t, we can still watch the video and enjoy the memory of our wedding. It’s fun to look back as long as you don’t find yourself wishing to go back. And I don’t. I’m happy to be where I am today–this project is helping me maintain that.

Oct 03 2012
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Rheumatoid Arthritis, Solitary Fun

Day 9: Morning Routine

Every morning, my husband and I go through a routine that gets me ready for the day. It goes like this.

He gets up at 6:00am, wakes me up, gives me a Tylenol, and then leaves with the dog for a morning run. I go back to sleep. He returns, gets ready for work and then wakes me up around 7:30 (before he leaves) with a bowl of cereal, vitamin D, Folic Acid and Prednisone. After he leaves, I lay in bed waiting for the pills to kick in. Yes sometimes I go back to sleep. More often though, I spend an hour looking at Facebook, Twitter and Instagram.

This morning, however, I read a new play. I am on a literary circle that reads play submissions for a theater (not the one where I work) and then discusses them in a structured format similar to a book club. We then make a decision on whether to pursue the play or playwright further. We also often offer feedback to the writer, should they request it. The play I read this morning was funny and moving with unique characters and interesting dialogue, yet I could see places where it could use work. This was absolutely thrilling to me! Writing my feedback for the discussion left me feeling like I had exercised my dramaturgy muscles. I was able to focus on an intellectual and creative pursuit that I think it so worthwhile.

My morning was a little more enjoyable because I read this play. I felt better knowing I was able to do something productive rather than just laying around “online.”

Oct 01 2012
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Guilty Pleasures, Online Fun, Rheumatoid Arthritis, Solitary Fun

Day 7: Mondays

Working in the theatre, I normally have Mondays off. I often have lofty plans for all the things I can accomplish on a Monday. Errands, cleaning, appointments, catching up with friends, organizing emails, planning meals, and writing blogs. Mondays are also the day I take Methotrexate, a pill that works well in combination with an injectable like Enbrel (what I used to take) or Humira (what I taken now).

I started this pill, or really set of pills (I take five 2.5mg pills), four weeks ago in the hope that, with the Humira, I can get my arthritis under control. It takes about six weeks to kick in and does come with some side effects. Many people experience “flu-like symptoms,” dizziness, or stomach problems. When I take it, I become exhausted. My hopes of running errands, cleaning, making appointments, etc go right out the window. I have literally been asleep most of today.

So, to take some of the pressure off of Mondays, and for the purposes of this blog, I have invented Guilty Pleasure Monday. Monday will now become a true day off where I can cuddle with my dog on the couch and read or watch whatever I want as long as I accomplish one thing from the constantly growing list of to-dos.

Today, I set up boarding for my dog for the weekend (headed to Iowa for a long-time friend’s wedding) and, for my guilty pleasure, read as much of Perez Hilton as I could.

This photo was not taken today, but I imagine this is what Mondays will look like from here on out.

Sep 28 2012
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Food/Drink Fun, Fun for Couples, Nightlife, Rheumatoid Arthritis

Day 4: I think it’s working

After another long day at work (and another 8:00pm traffic jam), I was STARVING. Ok, not literally. But I did feel like my stomach was eating itself. Thankfully, my husband and I had a reservation at Deleece, a small neighborhood place and the location of our first date. We also ate here after he popped the question.

Going tonight was a special event because we honestly have not been out on a dinner date in weeks. Most nights, we sit on our couch and watch DVR or read, not because we do not want to go out but because my energy has been too low or I have been in too much pain. This has gone on for long enough that I, honestly, felt intimidated by the idea of tackling nightlife (and the two flights of stairs to get out of the apartment. I’m feeling a whole blog post on this in the future…). Coming from work made it a little less daunting and I was looking forward to reminiscing about the other times we’ve eaten at this restaurant.

Needless to say, it is a special place to us made more special by both this project and the adjustment it has had, in just four short days, on my mood. While I may have left work grumpy, tired and hungry (yet again), I arrived at Deleece, excited, energized and, well, hungry. Each fun activity I undertake leaves me feeling better than when I began. While I do not aspire to have fun every second of every day (that sounds exhausting) I have definitely noticed an adjustment in my attitude. I both look forward to fun every day and see more fun in other parts of my life.

Tonight we toasted to this blog and enjoyed a much needed night out.

Sep 25 2012
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Online Fun, Rheumatoid Arthritis

Day 1: Opening Up

Creating this blog is the first fun thing! I really enjoyed designing and laying out the site as well as figuring out exactly what this project is all about.

Now, I have to think about how and if I will share it with friends and family. I would like to have readers but whether I would prefer they be strangers or loved ones, I cannot say. Putting this out there is not something I would normally do. I am not good at reaching out when I’m in need. Not, at least, when it comes to my arthritis.

In the past, when I have had flare ups, I would just hide in my apartment for a day or two until it passed. But both the longevity of my current problems and the fact that I do not live alone prevent me from doing this.

The issues I have now started a year ago. Previously, I was not taking anything for my arthritis but knew that it was time to start again. I wasn’t having major issues but also was not 100%. I started on Enbrel, an injectable that worked well for me in that past. But I kept getting infections and had to be tested for meningitis (ER visit number one). The only way to test for this, for those that don’t know, is to get a spinal tap. Thankfully, I did not have meningitis but I did end up with a spinal headache due to the pressure change on my brain when they drained the spinal fluid. The only relief I could find for this headache was to lay down. I spent 10 days in bed and when I was finally able to get up and around, I was having chest pain, dizziness, and shortness of breath. Doctors suspected I had a blood clot due to all the bed rest (ER visit number 2). I did not have a blood clot, perhaps just deconditioned from the bed rest?

From the imaging done for the clot, doctors saw that my lymph nodes were swollen. I was in a Walgreens when I got the call from my doctor saying that I needed to have a lymph node removed to test for lymphoma. One thing I am good at is keeping my cool long enough to get to a private space. I called my husband (then fiancé) from my car in tears, scared about the threat of cancer. Two short weeks later, I was having the procedure. Again, thank goodness, the tests were negative.

However all this testing and all the time resting left my arthritis totally enflamed. And for the past seven months, we have been trying to get it back under control with a combination of medications and cortisone injections. It’s been a period of trial and error during which I went back to work, got married in Mexico, was in a wedding in New Orleans and had my own big reception in Chicago. I was not hiding from people then.

And even though, my doctors did a good job of pumping me up for these events, they could not totally mask my discomfort. I got a lot of questions and concerned looks. When I reflect on it now, I realize that it did not go much farther than that because I shut down those conversations with a look and a one-word reply.

The one person I really can’t hide from though is my husband. He sees me at my very worst, when I need help just to get out of bed. On those days, he becomes my caretaker, getting me food, helping me dress and providing entertainment. Even if he has to go to work, he makes sure I’m all set up with everything I need before he leaves. I could go on and on. Seriously, the man’s amazing.

It is with his support that I start this adventure today. And I think it is the push I need to really open up about this part of my life that has been so private for so long.

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