Category Archives: Back Pain

A Month of No Enbrel

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As I mentioned in previous posts about the implications of a tick and the follow-up to that post about having to go off enbrel to take antibiotics, I am still going through the motions of lyme’s and mono. I finished up my antibiotics and was very anxious to get back on enbrel because of my increasingly painful back and si joint flare-ups. Unfortunately, when I called my Rheumy for his approval, I did not get the response I planned on. He told me that because the antibiotics are all gone, I need to now wait a couple more weeks until I restart Enbrel to make sure I don’t have any continued symptoms. Blah. I am not excited about waiting longer.

The nambumetone seems to not help as much as it had been previously- perhaps because I am not combo-ing it with Enbrel. My back pain in the mornings has gotten worse and lasts longer than before. The one thing that I did notice is that when I went to the gym the other day, I arrived in pain. I wasn’t sure if I could work out let alone jog. I decided to push through it anyway because I need to get some jogging in in light of the Feb half marathon in California. I hurt to begin with but as I kept going, I realized that my SI pain got better. It eventually came back a while after the gym, but while I was at the gym, I felt good! Guess I’ll keep exercising!

In light of everything that has happened I’m not sure if I’ll be able to run the entire half marathon in Feb, but I can at least do a run/walk. At first when I came to the realization that running the entire thing was probably not going to happen, I was sad. I felt like I let myself down. But now, I am ok with it and I know that I can work hard to get in a good run/walk and then I’ll be ready to take on the next half marathon and run the whole thing. Besides, I made it to the gym 3 times this week and I biked a total of 30 miles and run-walked about 4. That combined with some long walks outside and I’ll take it.

So, it looks like I’ll be calling the doctor to see what I should be doing in the meantime while I’m waiting to go back on Enbrel… perhaps he can suggest a stronger anti-inflammatory than nambumetone (750mg horse pills). For now, I’m going to go enjoy the beautiful day!

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And a Partridge in a Pear Tree

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Today was the inaugural run of the Jingle Bell 5K for Arthritis in Arlington, VA. While they’ve held the event in a number of other locations, this was the first time in the Metro DC area. They expected to get about 500 people to sign up to run; in the end more than 1,000 folks showed up dawned in their holiday hats and attire. Our team, And a Partridge in a Pear Tree, was 12 members strong. As such, we each chose to dress up as one of the 12 days of Christmas. My assignment was the partridge in a pear tree. With Andrew’s and his friend, Mike’s, help, we fashioned a pear tree out of a brown onesie (the one I used to be Scrappy Doo for Halloween), some leaf garlands from the craft store, some fake pears, and of course, a sort of partridge-looking bird. I did try to order a stuffed partridge but it appears as though they are all sold out of them this time of year… so instead, we found the most partridge-looking bird that Michael’s Arts and Crafts had to offer and that sealed the deal. We ended up removing fake bunches of grapes from the vine garlands and hot-gluing pears on in their places. The costume turned out beautifully. Andrew also contributed the sign at right… I ❤ it! And in the end, our combined group of 12 days WON THE COSTUME CONTEST! Eternal Pride. And the knowledge that we won the contest for the inaugural race. Needless to say, we have something to defend now and we can’t wait!

All in all the 5K went really well. I didn’t run, but I did have a great deal of walkers with me and it was awesome to get the support. Yet another huge thanks goes out to my friend, Rachel Worthington, for helping to pull this all together! And of course, a huge thanks to her fiance, Jason, for pulling back the reins and walking along with us (well, leaping… he was the lord of leaping after all). After the 5K, we all went out to brunch at Rio– Mexican and pretty delicious too!

So, how am I feeling now… about 10 hours later. Well, my ankles are done. I had a sore achilles on my right foot before I even started the walk and it seems to have exacerbated it… along with that, I’ve got a sore throat and some swollen glands along with a fever. I’ve noticed that I’ve been getting low grade fevers more often lately. Very strange- will have to ask my Rheumy about that at the next appointment. I think I will probably make a doctor’s appointment with either a general practitioner (I need a steady one) or my orthopedist just get my ankles and throat checked out. Can’t hurt, right? My rheumy has been pretty helpful but he focuses on my back only- which makes sense, as I have AS. However, I get the really bad joint pain in other locations, as I’ve mentioned before– I think I’d feel better if he’d address those too, but I’m not sure what else he could do- I’m on 750mg of Nambumetone twice a day along with my Enbrel… still, it can’t hurt to get a second opinion- make sure there’s nothing wrong from another perspective. So, given the sort of crapiness that I am feeling now, if I had it to do over, would I still do the Jingle Bell 5k? HECK YEAH, I WOULD!!

 

 

 

 

The day was wonderful and I had a great time with great people!

 

Today I Ran a Half Mile

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Yes, you read correctly. Today, I ran one half mile. No, it’s not as glorious as a 5K, 10K, half marathon, or heaven forbid, a full marathon, but it was progress and I’ll take it. At my one month mark of being diagnosed with Ankylosing Spondylitis, I proclaimed that I will be running the Rock N Roll Half Marathon next February in Pasadena, CA. Well, I have to start somewhere and today, that start was one half a mile.

For those of you who have ever completed a marathon, first off props to you- it is a great feeling to be in that special group of 26.2-ers. Someday, perhaps I will get back there again. Regardless, remember that feeling you get around oh mile 21? That oh my god, I am literally dieing there is no way I can put my left foot in front of my right foot again- every muscle is tearing and my bones are gone feeling? Well, that is what I had during my one half mile sojourn today. Now, don’t get me wrong, part of that is due to the fact that I haven’t trained in months. The other part of course, is my near and dear friend, AS. But such is life.

Tonight I lay in my bed with aching wrists, ankles, knees, hips, heels and a lower back. My body feels like I was accosted by a group of people with baseball bats. I voiced to Andrew that I hate the feeling of feeling like crap and I feel so frustrated sometimes and just like my body is completely giving up on life. And yet, as I sit here typing this post, I can’t help but smile knowing that today, not only did I get to go on a 7 mile walk with the love of my life and our bestest dog, Franklin, but I actually ran (ok, jogged, whatever) a half a mile.

I am well on my way. Today was a great Fall day and I wouldn’t have changed it for anything.

A Weekend at Home

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This weekend was our first weekend at home in a while. Even though we cleaned and ran a lot of errands, it was fantastic… mostly because I finished all of my grad school homework for the upcoming week on Friday night so Saturday and Sunday, we got to sleep in! And sleep in we did– at least on Sunday. I slept until 10:30AM!!! I can’t even remember the last time I slept that late. What a great feeling. I don’t think I really ever thought about how much work it would be having a full-time job and going to grad school part time. It’s a lot. I find myself constantly doing work and I feel bad for Andrew because I come home from work and sit down at my, er his, desk and go to work and just hope that he’ll make dinner and what not. He’s been amazing… really. I don’t know how I would do it otherwise. School and work keep me in a constant state of stress, not to mention the added fun of random side effects and drugs that I have to take to try to feel normal.

What an odd thing to say; I’ve always prided myself on not being normal, so it’s funny that I am now trying to find the right combination of drugs to be normal. Ah life, so entertaining. Feeling wise, my jaw hasn’t acted up since last weekend, my injection site is a big red bullseye, and my back has been really sore… so all in all, the usual. I do have the added pain in the butt of my fingers, wrists, and hands just giving up on life constantly. They are super sore and I am finding it hard to grasp things or squeeze things (say like a bottle of spray cleaner). They tighten up and feel like someone is beating them. The funny thing is, I don’t know if that’s the ankylosing spondylitis, the grad school/work combo, stress in general, or what… but regardless I am trying to figure out how to make it better.

I am confident that I’ll figure something out! My next follow up appointment is next week and I just passed the month mark of giving myself injections (where does time go?) so I’m sure soon enough I will find something that works well.

On to more uplifting things… this weekend we got some rearranging done in the apartment, we tried to clean the carpets, we cleaned up the kitchen, we watched some movies, and we made baked lasagna-like spaghetti squash. I can’t wait to try it out! Here are some pictures:

1. First you roast a spaghetti squash in the oven

 

 

 

 

 

 

 

 

2. After the squash cools, you shred it like spaghetti, using a fork and mix it with some ricotta cheese.

 

 

 

 

 

 

 

 

3. In a baking pan you spray with pam or olive oil and then spread pasta sauce or marinara on the bottom to coat.

 

 

 

 

 

 

 

 

4. You spread the squash-ricotta mix on top of the sauce in the pan.

 

 

 

 

 

 

 

 

5. Then you spread some fresh basil and dollops of marinara or sauce

 

 

 

 

 

 

 

 

6. Then you sprinkle on some Mozzarella cheese and a couple dashes of parmesan cheese.

 

 

 

 

 

 

 

 

7. You cover the whole thing with foil and then bake for 15minutes (until the cheese melts). You remove the foil and bake 5 minutes longer to brown to preference. This is how it looks!

 

 

 

 

 

 

 

 

Guess we’ll see how it tastes tomorrow!

World Arthritis Day is Coming…

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So I was over on Mariah Z-Leach’s blog, From This Point. Forward. earlier today and she had posted a fun fact about the Empire State building and World Arthritis Day; it appears as though the Empire State Building will be lighting up in blue on October 12th in support of World Arthritis Day! How cool is that? Anyway, seeing the fun fact made me look up what else was going on for Arthritis Day. There are a lot of cool projects and programs going on, and I found out that there is a huge supporting of Arthritis in Europe; they the European League actually has a huge map of all of the arthritis events going on (users can self-add events too). It’s over here.

Anyway, the theme for this year is Move to Improve. I like it. a lot. I’ve found a great deal of information on exercising with different types of arthritis and which types of sports are good/bad. The European League’s activity of the month is cycling, which makes me happy because I’m trying to get more into cycling in preparation for our Climate Ride next May! Cycling is supposed to be a great activity because it’s easier on the hips and knees then say, running (although now that I think about from a different perspective, in what way is running actually a good impact on your body… except for being a cardio-workout).

Ok, I guess that sounded a bit bitter, I really do love running and I think it’s great for you, despite what my past 5 or 6 doctors and orthopedists and physical therapists have told me. The combination of ankle surgery in 2009 and this continuing pain in my butt (literally), along with a host of other issues, have prevented me from getting back into running at the level that I would like to be. I was trying to think of questions to ask my Rheumy this week and honestly, my number one question is whether or not I can pick up running again… I just miss it. a lot. From what I’ve gathered online, there are certain medications that are not good to take if you have AS and are running because they further restrict your lung capacity which is apparently an issue with AS by itself. So, we’ll see what the outcome is…

Anyway, back to World Arthritis Day. There are a bunch of things going on, but the two that are pretty cool that everyone (arthritees and non-arthritees alike) should participate in are:

1. Massage Envy! Who doesn’t love massages? Get a massage and they’ll donate $10 to the Arthritis Foundation! Easy and relaxing :0)

2. Jingle Bell 5K for Arthritis: You can run or walk! It’s only 5k or 3.1 miles. It’s a great, fast, and enjoyable distance and it’s a ton of fun. We did it last year in Baltimore, MD. Andrew and I dressed up like Christmas trees. Everyone gets decked out in costumes and has a great time. If you sign up for it on October 12th, and you’re one of the first 1,000, you’ll get a free present, too! So go on and sign up; I know I will be!

A Baseball Bat to the Lower Back

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On Friday, we packed up our bags and headed north to my parents house for the night. As usual, we arrived after midnight. On Saturday morning we got up early and after a delicious homemade breakfast (thanks, mom!) we leisurely pulled ourselves together and reloaded the car for the drive to Red Hook, NY to visit Andrew’s Aunt Kelly, Uncle Burt, Grandmother, and a few other friends. We made the drive up in about 4 hours. I’ll write another post about the trip and all the wonderful food, conversation, people, and times we spent, but the purpose of today’s post was to talk about back pain. Everybody gets it, right? This morning was bad. Well, I guess last night was bad too. I didn’t sleep exceptionally well (and not from lack of exhaustion). I was super tired, but woke up a bunch of times with a super-stiff back that felt like I had been assaulted with a baseball bat in my sleep. I slept on and off through the rest of the evening, but this morning I didn’t think I was going to be able to get out of bed. Is it possible that someone actually did take a baseball bat to my back while I was asleep? Probably not, but I was positive that is what happened.

I did manage to get out of bed without too much pushing :0) and Kelly and Burt so wonderfully brought us breakfast sandwiches and coffee from the diner. We scarfed them down and decided that we would take Franklin for a long walk before we all headed to brunch/lunch. Kelly and Burt suggested going to Poet’s walk which is nearby and is a nice little trail leading down to the river. I have to admit, I didn’t want to go. My back hurt too much and I was really tired. That combined with the looming stress of trying to get A TON of grad school work done that’s due over the next 7 days was just too much. Well, I remember reading a bunch of articles on blogs and medical sites stating that exercise is supposed to help with the pain caused by ankylosing spondylitis. As I mentioned previously, I still haven’t had my follow-up appointment with my doctor, so I haven’t yet gotten all the advice, but I figured I may as well try something… and at least get some exercise.

The walk ended up being a lot of fun and a relatively flat 2.5 mile loop; the weather was gorgeous and it at least felt a little like my back loosened up or relaxed a tiny bit. Maybe it was all in my head, but even it was, I’ll take it. The hike was a lot of fun and it was nice to get outside for a little while. I really hope that I get some good advice and pain meds on Wednesday…mostly because I’d love to NOT feel like a baseball bat just went to town on my back.