Category Archives: Enbrel

I’m an AS Kicker. Seriously.

Standard

Hello there. Life is good today. It’s Friday.

Wow, so much has been going on! I am happy to say that my stress is at an all time low currently. While this will most likely change in the near future, I’ll take it when I can get it. I have now been back on Enbrel for 5 weeks and I have finished my second  short-course of Prednisone. So much to update you on… let’s see…

1. This past weekend, Andrew and I ran the Rock and Roll Half Marathon. It was Andrew’s first. It was awesome. It was in Pasadena, California and we had an amazing time with amazing weather. Just perfect! I have definitely decided that running reduces my stress levels immensely. I plan to continue doing it. It also helps that running temporarily reduces my AS symptoms.

2. We finally got our new kitchen set-up. This makes me happy because we can cook and we have been and it’s been delicious and awesome! Next step- the rest of the house!

3. Voltaren Gel– it seems to actually work. My knees are still not 100% but the gel does seem to be helping my knee pain a lot. I will continue using it for sure… plus! No cortisone injections!

4. Enbrel– while my pain is not gone, my fatigue has vastly improved over the past 5 weeks. For instance, it is now 2:30 in the afternoon and I am still awake… and all I had was a large green tea today (in the caffeine department). 5 weeks ago at this time I would have had 2 caffeinated sodas, 3 cups of coffee, and a cup of iced tea and I’d still be falling asleep. I am thanking Enbrel for these things.

5. Prednisone– it did seem to help with the pain and kind of jump start the Enbrel working. As you may remember, I was having terrrrrrrrible heart burn. As a result, I went on a 14 day course of Prilosec which I have just about finished up. It has worked wonderfully and my heart burn has died way down. thanks, Prilosec!

6. We signed up for our CSA again! I am super excited— I love going out to the farm and getting fresh produce and cutting fresh herbs. I see lots of food blogging in my future!

7. Finally, we found someone to take over the lease on our apartment— so no more double rent paying!!!! Such a good feeling! This took a TON of stress off of both Andrew and I.

Yes, life is good right now. Calculus is still there and still needs tending. Hopefully after we unpack this weekend I can buckle down and get it done. It’s about time!

Advertisements

Voltran Gel for Osteoarthritis

Standard

Voltran gel. So, it’s not really called Voltran, but it’s close, so that’s what I’m calling it. On Wednesday, I got to meet with my Rheumy for a much anticipated appointment. Over the past two months, as you know, I’ve been off Enbrel and not visiting my Rheumy because of a Lyme’s Disease and Mono diagnosis. I was really worn down, frustrated, and stressed out when I showed up. The nurse who is always there and works with me (the same one who taught me how to use Enbrel) put her arm around me and led me back to the exam room. She asked me how I was doing and I was completely honest with her. She was so understanding and wonderful. She told me to take a deep breath and said that we’d figure it all out. My pulse was good (72 beats a minute), but my blood pressure was up. The last few times I’ve gone to the doctor it’s been elevated which is weird because usually it’s low and everyone is always telling me how wonderful it is.That’s for the next post.

So anyway, I got my long-awaited and needed direction from him; I can go back on Enbrel! This morning I took my first injection in over two months. It was funny because this time my mentality was, thank god I get to take it, rather than ugh another injection. It made it much easier. So basically the Rheumy said we’ll give the Enbrel two more months and if it doesn’t help, we will try something else. I’m hoping the Enbrel works. He also said that if I don’t feel any better next week to let him know and he’ll probably put me on a short term course of steroids. In addition, I will continue to be on Nambumetone and hopefully that  coupled with Enbrel will do the trick.

Then he turned to my knees. I had complained about them before and how it hurts to be in the car too long, they hurt when I walk, etc. He re-examined my xrays and poked and prodded the knees for a bit and said that it appears to be osteoarthritis and that my bursae are puffy and swollen (inside of the knees). He said that he could give me cortisonal injections (to which I made a face… more injections?). He smiled and said we would try a topical osteoarthris gel first. You 2g of it on the spots of pain/tenderness 4 times a day. The gel, Voltran gel, as I affectionately call it, is another NSAID (as is Nambumetone). I’m hoping the gel will work.

So that’s about where we are. I go back in a month to follow up and get blood work done again. In addition, if nothing improves by next week, I call and go on steroids. Here’s hoping I feel better next week!

Thought for the Day:

Too Tired to Think

Standard

I. am. utterly. worn. out. I don’t know what’s gotten into me this past week or so, but I am exhausted. Absolutely exhausted. I drink coffee in the morning and then a glass or two of iced green tea, so it’s not as if I’m not getting any caffeine! And yet, I am still completely run-down. I mean, there has been a lot of excitement going on around here. We just signed a lease for our first house! I had a personal record run of 6.02 miles! I found out one of my best friends is preggers! But I’ve also been getting decent amounts of sleep. So who knows. I am still sticking with the point that I feel great while working out but awful when I’m not. But I can’t work out all day, not with a full time job and not with the life that we’ll be living over the next month or so between traveling and packing and moving and working!

Wednesday at 4:15PM I have a follow up appointment with my Rheumy. I am hoping and hoping and hoping that he tells me it’s ok to go back on Enbrel. The Nambumetone just doesn’t seem to cut it and I’ve been really sore these past few weeks.

For the first time though, I am scared that I may not be able to do it all.

Classes started today. The national workgroups that I’m leading at work start this week. Calculus still has to be completed. We need to pack up the apartment. We need to find a subletter. We need to move. I don’t know if I can do it all. I’m scared that I won’t finish Calc and I’ll get kicked out of Grad School. I’m scared that I’ll fall flat on my face while leading a workgroup. I’m scared that I’ll fall behind in class because I’ll be too tired to do the readings and take part in the discussions. I’m worried we won’t find a subletter. I’m worried we won’t have anyone to help us move. I’m stressed out and I feel like crap.

Somehow things will work out…

Feeling Awesome by Work Out and Crappy by Anything Else

Standard

  Say hello to work out Meghan. Running (well, “running” but it’s not walking, so who cares how many miles per hour it is?) with the breeze blowing through my hair, one foot after the other, busting out an uphill gain (Ok, so it’s only 50 feet, who cares?) while I’m doing a little dance move with my hands to Pink’s “Raise Your Glass.” Perfect. Seamless. True, legs are a little sore, calves still haven’t completely adjusted to the new vibram five fingers or the torturous cold air 4 mile jog that I am putting it through. Yes, my knees are a little rickety and at a time or two I slide ever so gracefully on a small patch of black ice. Yes I am absolutely covered in sweat from head to foot because for some unknown reason, I perspire 1000000000% more than the average human being.  Yes, my earbuds slide out every few minutes because apparently my ear holes aren’t properly formed for the latest Sony bud covers. Yes, my spandex pants are a little too tight, thus accentuating parts of me that I’d like a little more toned. Yes, I’m breathing through my mouth, gently wiping slobber out of the corners of my mouth and off my cheeks. Yes, I MAY EVEN BE mouthing or heaven help us, SINGING OUT LOUD to the song on my shuffle. But, don’t I look happy? I am in my element. I am doing it. I have AS and I’m out of shape and I’m running. And I like it. I even got Andrew out there running with me and putting up with my crazy routes. My butt feels NO pain. Take that SI joints, I have found a way to mute you. Take it! My lower back feels like I have brand new vertebrae of flexible steel. I don’t know if it’s possible, but just imagine it is. My muscles are relaxed and I feel like I could fly.

That’s work out Meghan. Now meet Meghan at any second of the day when she is not working out.

Meghan is broken. Meghan is in pain. Meghan is exhausted. Meghan is ready to throw in the towel. Imagine your neck and back and butt being steam rolled, spat on, and steam rolled again. That is Meghan on no Enbrel and not in work out mode. It could be an hour after working out, it could be in the morning before working out, it could be on a “rest” day. This Meghan is evil. She feels like crap, she is groggy. She feels like she has been up for 5 days straight. She wants a vacation.

 

How is it possible to be both Meghans? I’m not sure myself, but trust me, I know it is! I don’t get it. It exhausts me to start thinking about it (not currently working out). I try to figure out how I can feel so wonderful exerting energy that quite frankly, I don’t even know that I have in me. Yesterday, I did NOT want to get up. I knew we were supposed to run 4 miles and I wanted to run 4 miles but I didn’t want to get up. I hit snooze a couple times. Andrew got up and got ready and then came back into the bedroom. It took everything I had in me to get out of bed. Once I was outside, I felt a little more awake but really sore. I remember thinking to myself, there’s no way I’m going to be able to run 4 miles. But you know what? I did… and I’m not sure how- but I do know that during those 4 miles I felt invincible. So I guess my question is, is it possible to work out all day? Because if I could, I would. If that’s the only way to get relief, I am. in.

Next Monday, I have an appointment with my Rheumy (FINALLY!). I’m really hoping that he gives me the go-ahead to get back on Enbrel. Please cross your fingers– I think if I can go back on, I will start to feel 1000000% better!

 

Hey AS, I just kicked your butt!

Standard

That’s right, folks! This morning I kicked AS right in the keester. I ran not 0.5, not 1.0, but 2.0 miles. Not a run-walk, a run. Well, a run as fast as I can run which is more of a jog, but really, I don’t care. I wasn’t walking. I am continuing to deal with not being on Enbrel although I am VERY ready to be back on it. As I mentioned previously, I show up at the gym hurting and then as I work out and loosen up, the pain gets better somehow. It’s like magic (except in my knees which have really been bugging me lately but that’s a story for another day).

I feel good throughout the workout and that adrenaline… you just can’t beat it. When I started running this morning I thought, oh I’ll just run a mile. Then I got to a mile and said, oh I’ll just run a mile and a quarter and so on and so forth, until I got to two miles. Now, as I mentioned, I may not make it to running a full 13 by the time of our half marathon, but I will do my absolute best to run as much of it as I can so that the next one, I will run straight-through.

Now, I am hurting more (it’s about 6 hours after the workout). My back and SIs are stiff, my knees and ankles have given up, and I smell like sweat, but still I couldn’t be happier. Today, I kicked AS for two miles. I’ll take it.

A Month of No Enbrel

Standard

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!

Fa-La-La

Standard

Merry Christmas, everyone! It’s hard to believe that yesterday was Christmas. Where does the time go? I hope you all had a wonderful wonderful holiday and got a chance to spend some time with family. Andrew, Franklin and I were lucky enough to spend 3 whole days and part of two days at my parent’s house in Pennsylvania.  We were overwhelmed by all of the awesome gifts that we received from our two families and having the chance to spend time with my grandmother, mom, dad, and brother (and Andrew and Franklin of course) was just wonderful. Now we’re back in DC, settling in and trying to get ready for work this week (YUCK!). This weekend we’ll be heading off to OCMD to ring in the new year and a whole host of new resolutions… to be shared (perhaps?) at a later date. For now we’ll focus on putting our pasta maker to use!

I wanted to follow up on my last post (wow 1/2 month ago, I’m sorry!) In my last post about the implications of a tick on autoimmune diseases, I mentioned that my regular doctor told me that my lyme’s disease test came back positive. I then went off to visit an infectious disease doctor. The appointment went well- I spoke with both a doctor and an assistance who took my vitals, chatted with me about my history and told me where we were going from there. Basically they wanted to re-run blood work to confirm lyme’s and test for mono, toxy something or other which is caused by eating undercooked meat or soil, and a host of other things. I begrudgingly agreed. What’s another 3 or 4 tubes of blood… so off I went with a chat from the infectious doctor that he’d call me back in a week.

About a week later I received a call from the assistant I had met with- she was really nice and she calmly explained to me that my lyme’s disease test came back positive again as did the mono test. Thus, she said, I’m really sorry- you have lyme’s and mono. Umm what? Where did that come from? At least it explains the tiredness and the neck stiffness and the headaches and what not. They prescribed another 2 weeks of doxycicline (so I have a month prescription now) and told me to take it easy and that the mono would go away on its own.

The upside of this is that I have a diagnosis and I’m on medication. The downside of this is that for the whole time that I am on doxy, I can’t take enbrel… so my back and my SI joints have been acting up A LOT. I’m just hoping that now that it’s been a little over two weeks, my Rheumy will give me the go-ahead to go back on Enbrel so I can get back to feeling 100%. As I’ve mentioned in previous posts, it’s been a rough Fall/Winter of 2011, but we are happy and ready for 2012- we both feel as though there are good things to come!!!!