Category Archives: Ankylosing Spondylitis

Seizures and Blood

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Yesterday, I had a general check-in with my Rheumatologist to check and see how the Enbrel and Prednisone pack had worked out and in general how I was feeling. I never before arriving that I was going to have to deal with labs. For some folks, having blood drawn is as easy as brushing your teeth. I am NOT one of those people.

You probably remember from some of my previous posts, just how much I dislike  HATE DISDAIN LOATHE being pricked with needles (in fact the post was entitled,I hate needles. seriously.”… which is actually rather humorous considering I have to inject myself once a week (although sure click self injectors ARE MUCH BETTER than syringes, I will say).

I don’t know what it is, but I could never handle watching people have needles stuck into their arms or hands- it makes me queasy, uneasy, and nauseous. In fact, even as I was looking for an image to include in this post, I tried to find one of someone having blood drawn and I started to feel all clammy and nauseous. Thus, you are stuck with an SI joint image- because well, the SI is important to me :0)

So back to my appointment. I checked in and my Rheumy told me that we should keep on the path and see if Enbrel can’t continue to improve my situation. If by the next time I come in, I do not significantly improve, we will look for another method (I am confident that Enbrel will work). I will continue on with my Voltaren gel as well as my Nambumetone. I also talked to him about my stupid cold sore. I got it last weekend and it’s hanging around. He told me that it should go away soon, wrote me a prescription, and told me that prevalence of cold sores is normal (whatever “normal” is). In addition, he inspected a hard lump that I discovered under my right lower jaw and determined that it appears to be an infected lymph node. Bacteria gets into the cold sore and infects your lymph nodes (awesome). Again, it should get better on its own over time, but if it doesn’t, I’m supposed to let him know.

Then he said that phrase that I l.o.a.t.h.e.: Did I get labs last time you were here? No I replied in a very sad quiet voice. He chuckled and said we should get them and go from there. So, I begrudgingly went out to the nurse’s station and sat in my chair and instantly felt the anxiety coming on. I tried to push it out of mind reminding myself that the last two times, I didn’t black out at all. The nurse was super friendly and put the needle in quickly and started talking to me. In an effort to avoid the “black spots”, I looked up at the ceiling. Everything was fine until it wasn’t.

All of the sudden I felt myself passing out. I state such and then what happened next is really hard to explain. I felt a jerky sensation and everything was moving really fast and I couldn’t stop my body from “freaking out.” Then everything went dark. I woke up to smelling salts, 4 nurses, and my doctor standing over me asking me if I was ok and how did I feel, etc. They had my legs hoisted into the air (thank god I wore pants, right?) and brought out orange juice, the blood pressure machine, chocolate, and fluids. They proceeded to get me right side up and seated and then calmly said that I had experienced a mini seizure. That they could be brought on by extreme stress and anxiety. It was one of the scariest moments of my life. I don’t like not having control. Yesterday, I lost controlI would prefer not to have that feeling ever again.

So, a while later, I left the doctor’s office with their consent that I was OK. I went straight to the deli and got a sandwich. Then I felt terrible all day yesterday. Now I don’t ever want to go back to that office again but I know I will and I will freak out the next time I get blood drawn. Ugh. Why hasn’t someone developed a tool that can run over your skin and “scan” your blood and automatically read the test results. I’m going to invent that.

Either that or get a prescription for Valium.

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I’m an AS Kicker. Seriously.

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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!

Stress. Stress. Stress.

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We all know it, just when we need to be in a completely zen-like state, all hell breaks loose and 50 million things need to be done at once. You start to get those super tight muscles in the back of your neck- you start to breath heavier, you start to worry. It will never get done. There is no way.

As I mentioned in a previous post, I have had a lot going on and needed a way out. I was 10 feet under and digging with no sign of light or air. So, after some lengthy discussions with numerous folks and with the support of Andrew, I have gotten myself into a much more agreeable situation.

  1. We hired movers. We no longer needed to put our not so springy bodies through the ringer to try and get all this stuff moved from our apartment to our house.
  2. Calculus. In light of the AS flare-ups and the fact that my Calc prof fell behind grading my assignments, he granted me an extension to May 2, 2012. Awesome.
  3. Classes. After a lot of thought and albeit, a bit of defeat, I decided not to take courses this semester. I have 5 years to finish my Masters anyway, so why cram it all in at a time when I feel physically torn apart and mentally demolished? This will give me time to finish Calculus, move, and get the right combo of drugs!

We still need to unpack everything and we still need to find a subletter, but we are going in the right direction and all in all I am feeling pretty good. Stress is there but not overwhelming. Running helps a lot with it. Now if I could only get my blood pressure down and my heartburn gone!

Voltran Gel for Osteoarthritis

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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

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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

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  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!

 

The Best Money You’ll Ever Spend

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You hear it a lot with diet fads and exercising enthusiasts. You see it posted in shoe stores and in advertisements for shoe pads. The best money you’ll ever spend is on a good pair of shoes. Well, I couldn’t agree more. This time, I’m putting it on my “realizaversment” of AS. The pamphlets and the books say that exercising is good for folks who have AS and that it can help with the pain management. As many people with auto-immune diseases can echo– umm, ok smart pants… but, if you’re in a ton of pain and your back and neck are stiff and your SI (aka butt) feels like there is a knife in it, how are you supposed to exercise?

My answer. You make yourself. That’s the best way I can put it. Perhaps my motivator is a race of some sort. I’m signed up for a half marathon in February and a 5-day bike ride in the summer. I’m not going to lie, I’m scared shit-less (pardon the language) of how my back and SI will feel before/during/after these races, but I forced myself to go to the gym to exercise and I did it over and over and I’m continuing to do it. And you know what? For that 30-45-60 minutes that I spend working out, my back and SI don’t hurt. It’s amazing. And you know what? Rather than spending my time focusing on blisters or the way the shoe was rubbing my little toe or how my arches hurt, I enjoyed my work outs. How? By coughing up some dough to get fitted for a good pair of running shoes. The folks at the running store actually watched me run and they commented on my gait and found me a pair of shoes that work really well. And that my friends, is the best money that I’ll ever spend because when I wear them and i go to the gym or go outside and exercise- for those 30-45-60 minutes I feel minimal pain. And I’ll take that.

Those shoes and perserverance is how I ran a 5K this past weekend. Now I feel invincible.

 

In other news, Andrew’s sister-in-law, Mariah, whom I’ve mentioned previously on my blog awarded me with the Liebster Blog Award! Mariah, if you don’t remember, has RA. She is now preggers and off Enbrel and the drugs. You can find her over at From This Point. Forward. As stolen from her blog post:

A Liebster is: “sweetheart, beloved person, darling adj. dear, darling; beloved, liked very much; affectionate, loving adj. favorite, preferred above others; liked or loved above others.”

So here are the rules of this award:
  1. Thank the person who gave you the award.
  2. Link back to the Blogger (or Bloggers) who awarded you.
  3. Answer the following questions, down below.
  4. Pass the award out and recognize other Bloggers letting them know that you love them.
So, as mentioned previously, a HUGE thanks to Mariah Z-Leach over at From this Point. Forward., who was diagnosed with RA and hasn’t let it stop her… and now she’s an expecting mom (can’t wait for the baby shower!)
Ok. On to the questions:
Favorite color: Orange and Hot Pink. Just perfect.

Favorite animal: Besides my pup, Franklin and my bearded dragon, Roxy… Penguins or Manatees :0)

Favorite number: 2. It’s way ahead of most and has the motivation to work to improve.

Favorite drink: Iced green tea or Gin and Tonic

Facebook or Twitter? Facebook. I use twitter occasionally but Facebook is more fun.

Passion? The environment, cooking, running, biking, and living life to it’s absolute fullest. Oh and doing what someone says I can’t just to see the expression on their face.

Getting or giving presents? I love giving presents.

Favorite day: Flag day. Andrew and I picked it is as our anniversary and on our drive home from our first trip away together we found it was flag day…
Favorite flower: Snap dragons. Always loved them and their names.
The rules are unclear on how many folks to give this award out to, so I’m just going to award it to a few choice folks who I think our rock stars.
My first award goes to Jess over at Just Call Me Janks. She’s a 20-something Baltimorean who blogs about life in her 20s. She recently got engaged to one of my all-time bestest friends from college, Jason Ader. She has a great blog about life and I think you’ll all enjoy it!
My next award goes to The Faces of Ankylosing Spondylitis. This blog/website is a great project that showcases the stories of folks who are suffering from AS. It has some very insightful information and it really helps inform folks of what people with AS go through day in and day out!
Lastly, I’m giving an award to Kelly Christal Johnston over at Hurting but Hopeful. She has an extensive blog on family life with AS and the aches and pains and bumps in the road. She is a very strong woman who keeps a positive attitude!