My First Month of Ankylosing Spondylitis

A month ago, I was diagnosed with Ankylosing Spondylitis. It’s amazing how much your life can change in the blink of an eye. One day I was recovering from what I thought was some stupid injury I got from pushing getting back into running too hard and the next day I was diagnosed with an incurable auto-immune disease. I went from RICE (rest, ice, compression, elevation) to injections, pills, creams, and sprays. I went from “just take a week off” to this is how it’s going to be forever- we will work to find a way to manage the pain. Amazing. Just completely unreal. I went from I can do anything to you may not be able to do everything. Well, I’m sorry but I just won’t take that for an answer.

I am unique. I am individualistic, I love with passion, I work with desire, and I have an insatiable need to try new things, explore the world, and live my life as an adventure. I refuse to let AS define me. It may be a part of me, but it will only make me stronger and more motivated to prove to it who really is the boss.

I may need to give myself refrigerated injections once a week that sting like hell. I may need to carry three bottles of pills around in my purse at all times, and I may need to be armed with Benadryl spray and hand sanitizer, but so what? You may see them as weights dragging me down and holding me back but I see them as a way to get through the day the way I want to get through it- with vigor and vengeance.

On December 3, I will be walking the Jingle Bell 5K with my one of my best high school friends and a bunch of other Arthritis Foundation supporters. You can donate to or join our team here.

Next February, I will be running. Yes, I said running, the Pasadena Half Marathon. It begins and ends at the Rose Bowl- that imaginary place on the west coast that I grew up watching football games and parades near as a kid in Pennsylvania. In February 2012, I will be running 13.1 miles. It’s not too late to sign up here!

Next May, I will be biking from New York City to the capital in Washington, DC. It will be 300 miles over 5 days, camping and biking as part of the Climate Ride. I will be supporting environmental causes and bike safety. Help me raise enough to cover my expenses here or join Team SFS!

And that’s just the beginning. I look forward to sharing with you the trials and tribulations of Ankylosing Spondylitis as I take the world by storm. Living my life, the way I want to live it rather than the way AS tells me I should live it. I will not let AS define me.

Updates on Worldly Adventures

As you may remember, I began charting my trips/adventures in July 2011. Today is November 2, 2011 (also, it’s a palindrome: 11022011 AWESOME). I have updated my numbers below. To see the whole trip charted out, check out this post here.

- traveled more than 27,000 miles (eeks, talk about your carbon footprint…)

- spent at least one night in 17 states

- slept in 22 different beds/ 14 hotels, 7 houses

 

I will add that our travel is going to be significantly reduced in the upcoming month or so- Andrew is scheduled to have surgery done on Tuesday, November 15th. They will be cutting into and rebuilding his external oblique (ab wall muscle) and removing whatever that little hard bass is that’s embedded in the muscle wall. I am hoping he has a speedy recovery, but as anyone who has had surgery knows, speed doesn’t always come with the territory! Regardless, I am glad he is going to be OK, I am glad we’ll get some time to regroup and I am more than happy to save up vacation days for an even bigger and better, more awesome trip down the road!

A Week in Colorado

The past week I’ve been in Colorado. I was there for a week running a National GRTS Users conference out of the EPA Region 8 building (which is gorgeous by the way) and then Andrew flew in and we got to spend Saturday-Tuesday morning with his brother, Austin, and Austin’s wife, Mariah. I really like Colorado. It’s so much fun! And a lot of things happened that I need to update on. First off, there was the immense amount of jaw pain that I reported on. There was also the issue of the random red splotches, bumps, and hard spots that were occurring at my injection sites, each time looking worse. So, I finally decided to call the Rheumy on Saturday and leave a voicemail on the emergency line- because I was positive I was having an allergic reaction- big red, hot, painful bullseye splotches- like the one at right. So I called the emergency line and got a hold of a woman. I started to talk about how I had only been on Enbrel for three weeks and she cut me off. She asked me for the name of my doctor. I told her and she said back are you calling the right place? There’s no doctor on my list with that name. I repeated it and spelled the name and said I had been coming for a month. She replied with well we can’t help you if he’s not on the list. Then she read through the list of doctors (all doctors at the same location) and I repeated yes, my doctor is newer perhaps he’s not on your list, she yelled back well we can’t help you if he’s not here, you must have the wrong place. Then she hung up. I would like to pause here and reflect if I may.

It is already hard enough to feel like you call your doctor ALL the time to complain about some new awful source of pain or ask or double check to see if something is normal. It is equally hard to gain the courage to call and try to explain the amount of pain that you are in thinking all the while that your doctor doesn’t necessarily believe you. After all, auto-immune diseases are weird. There’s no flashy broken bone or torn ligaments (well sometimes there are but not always). Add on top, a woman who is downright horrible. It was a bad experience. I let it go until Monday and then called back to talk to my doctor. Long story short, he said he doesn’t want to give up on the Enbrel yet and that I should try topical Benadryl. So I added that to my repitoir, along with a prescription for Flexeral (not happy about this one) for when TMJ acts up.  I also moved up my next appointment. So that’s that.

In other news, Denver and Boulder were a ton of fun! I love the mountains, the people, the food, the views, the beers. Just awesome. I didn’t get as much of a vacation as I had hoped for (too much grad school stuff to work on) but I did get to sleep in one morning and do some fun things and best of all, hang out with a lot of great people. Here are some of the things we did…

On Friday night before Andrew arrived, I went with Austin and Mariah to a Halloween Party!
My costume was: Everything but the kitchen sink

And it SNOWED during my GRTS Conference— and we had an early dismissal!!

And we went for a nice walk around  Coot Lake where their dog, River, swam!

We went to a playoff game for the Colorado Rapids!

And of course, we went to a brewery. This one’s the Tasty Weasel Tasting Room at Oskar Blues

As you can see, we did a bunch of fun things!!! We also tried out a local breakfast burrito shop, I ate sushi (! don’t worry just veggie sushi), and a couple other hot spots. We played in a toy store on Pearl Street and Andrew and I dressed up as Scooby Doo and Scrappy Doo. We had a great time and I wish we were still there!!!!

Did Someone Wire My Jaw Shut?

Today was the last day of the 2011 Annual GRTS Users Conference and I couldn’t be happier. Not that it didn’t go well and not that I don’t love all the folks who came out from all over the country, but because I don’t think I could handle one more day or even 4 more hours. This week has been very trying. I’ve a Mid Term, the conference to put on, a 4 hour presentation to give one morning, overseeing other presentations, listening to folks voice their opinions (sometimes VERY strongly) about the issues that the database has or the way the government works… and socializing. Now it’s Friday, I have gotten very little sleep and my mind won’t stop racing. I’ve got so much to do between work and school. I was really looking forward to spending the next 4 days not caring and not thinking about all this stuff, because I’ll be in Boulder with Andrew and his brother, Austin, and Austin’s wife, Mariah. But, looks like I’ll be finishing up work instead :0(.

The worst part is on top of all the work that has to be done and the talking and conference-going that would tire out anyone, there’s the AS. I’m getting really frustrated. I know I have to wait for medications to work and it takes at least a month sometimes to see if something is working and having an auto-immune disease is like being a lab rat. But what gives? Everyday I feel like there is a new symptom or issue and it’s frustrating. The last few days I’ve had those rando- red circles appear. Fine, whatever. They itch sometimes, they’re sore sometimes. No biggie. But my jaw and my head? I NEED them to be ok! I’m sure my head is linked to the jaw but my jaw literally feels like someone wired it shut (by the way, never google image search for a wired jaw it’s gross).

This afternoon we went out to lunch and i couldn’t even eat my burger. It wasn’t huge, it was small. I tried to bite it, it hurt so bad, tears formed. I had to eat it with a fork and knife. I’ve only been experiencing the jaw pain since Enbrel started. I’ve never had it before. Now the question becomes is it because of the Enbrel or the AS? Or something completely different? It is a symptom of AS it’s just I’ve never felt it before. I guess it’s time to call my Rheumy.

Regardless, I am confident that we will find a treatment that works well and gets me back to normal (whatever that is)! I will be patient and in the meantime, continue blogging about the weird things that I feel and discover.

Today on Weird Things that Happen at My Injection Site

So, this week I’m in Denver running a national conference on the 319 Grants Reporting and Tracking System. I’ve been super busy and working all hours of the day, thus why I haven’t posted sooner. I am planning on a larger and longer post, but for now I’ve been experiencing some rather strange side effects at my injection sites. So, I figured I’d share some pictures with you. Tomorrow is injection #3! Hard to believe I’ve almost been on this for a month now. Crazy!

 

 

 

As I mentioned after my first injection of enbrel, I have had some strange side effects. Well, shot #2 did not disappoint. Nothing right afterwards, but two days later, I got a really big red spot. It looked like this —->>>

 

 

 

 

 

 

 

 

I watched it and low and behold that night, it got bigger.

 

 

 

 

 

 

 

 

 

 

In addition, I noticed that on the leg where I previously did an injection, there was a small rash/clustering of red —>

 

 

 

 

 

 

 

 

 

The next morning– hello matching red marks! Lovely.

 
 
 
 
 

And the other side…

 

 
 
 
 
 
 
 

Tomorrow is injection #3. Can’t wait to see what happens next!!!

Oh and side note- headaches and stiff jaws seem to be the going side effects that I will get every time I inject enbrel.

Flying with Enbrel… It’s like a Bullseye

Today was my first experience with flying while carrying Enbrel. The best way I can describe it is that I felt like a loser… At first, before I flew, I was really nervous. I called the hotel first to see if the rooms had refrigerators in them. Of course, they do not. So I had to explain to the guest services woman that I was traveling with needles and that I had to keep the medicine refrigerated. She was very friendly and said she would make sure to have a refrigerator placed in my room for my arrival. Awesome, she was very friendly.

Next I called the airline. I read a lot about how you shouldn’t check enbrel in your checked luggage because it could freeze due to the temperatures. So, you have to keep it in your carry on. I could just imagine how that would go over at the security check point. So, I called the airline to ask. Of course the first thing she said was “That’s a TSA problem, not a *insert airline here* problem.” First off, I apologize if my having to give myself shots is a “problem” for you. I really don’t mean to inconvenience you. Ugh. After that though, she pulled up the TSA website and read through it and told me that I would need to pull it out of my bag and be sure to travel with a sharps container as well to show I was disposing of the needles properly, etc. The final point she made was to make sure I kept my ice pack in a ziplock bag since it was a liquid, just frozen. Ok, whatever.

As you may remember, my garb is pretty nice. The sharps container and the needles fit together in the bag and an ice pack slips in the back- looks more like a lunch bag really. It’s nice, it’s pretty inconspicuous, you know except for the word “Enbrel” posted all over it. Well, this morning as I packed up some last minute items, including my ice pack, I grabbed my box of injectors- my first one was packaged by itself, so I underestimate the size of my new pack of injectors (which is 4 of them). The box doesn’t fit in the bag with the sharps container. at all. I was too afraid to remove one of the injectors from the pack in case it got screwed up or the needle broke being shuffled etc. So, I had no choice but to remove the sharps container and pack it separately.

I arrived at the airport, checked my bag, and got in line at security. I unloaded my laptop and ipad and removed my sweater and shoes and then gingerly took out my Enbrel bag followed by the sharps container and placed them in a bin. You would have thought I pulled out a friggin’ machine gun the way people started staring at me. I wanted to yell at them but I didn’t have the energy and figured it won’t be worth it. As I waited to push my bins through the scanner, a security guard came over and told me I had been randomly selected to have my hands swabbed (yeah right). She swabbed my hands.

I pushed my bins through and walked through the xray scanner thingy. As I knew would happen, they stopped my Enbrel bin to stare at it for a while in the machine then decided they need to investigate further. They picked up all of my things and carried them over to a separate security area and opened up the lunch bag and inspected the injectors and swabbed the inside and outside (even though I gave them my signed doctor’s note). After about 20mins. more I was cleared. I thought my travel troubles were over.

Then I got to the hotel. I checked in and asked if it was on file that I needed a refrigerator. The guy said yeah, for your injection medication, right? More stares from surrounding people. I replied yes. He said it would be right up. I came to my room and waited for an hour or two and it still hadn’t come. So even though I had called ahead and checked again when I arrived, I had to call again. I felt like a jerk but whatever. I don’t want 4 injections going to waste. The woman apologized and sent someone up about 5 minutes later. Now I have happy Enbrel.

Long story short: traveling with needles can be humiliating

Lesson learned: people really have no idea what it’s like to give yourself injections or rearrange your life around your medication.

 

A Visit to Aunt Kelly’s

This past weekend, our trip up to Red Hook, NY to visit Andrew’s Aunt Kelly, pushed me over the 23,600 mile mark on my travel tally between July 1st and now. That brings the totals to 16 states, 20 beds, 13 hotels, and 6 houses. As I said, we headed north to Red Hook, NY.

We had a fantastic time in NY! We got to see a bunch of Andrew’s relatives and their friends and of course, Kelly wined and dined us :0). Before we headed up there, I was a little nervous about how Franklin would do in a different house and with a new puppy. Kelly’s pup is named Rocky and he is just a ball of joy! Anyway, the visit went swimingly and Rock and Franklin got around really well! I think Franklin needs a friend!

Anyway, along with the pups being new best friends, we had a chance to catch up with friends and family which really nice and relaxing (although I had to mix in some school work here and there). On Saturday evening we had a delicious meal of grilled beer can chicken and grilled filets. In addition, we had some brussel sprouts and salad and a few cocktails. The cherry on top? A scrumptious fruit tart!

On Sunday I wasn’t feeling 100% but after some pushing, we went on a little 2.5 mile hike down to the river to get us and the pup some exercise. We then dropped Franklin off at the house and after changing headed over to a place called the Beekman Arms. Located in town, it was actually the location of Andrew’s parents’ wedding reception. Such a beautiful place and delicious drinks and food! While Andrew chose a pomegranate margarita, I went with melon mojito. YUM! For meals, I had an omelet with spinach and feta and Andrew had french toast.

After lunch we grabbed some ice cream at a local outfit, called the Holy Cow. From there, we headed back and relaxed and tried to get over stuffing ourselves! We met a few more friends that came by and relaxed with gin and tonics, vodka tonics, and more. So relaxing and enjoyable. For dinner we dined on leftover steak and brie quesadillas! Monday morning we were up early and headed to the diner to see Andrew’s other aunt. The owners sent out some sausage and bacon for Franklin which he greatly appreciated!

The trip was wonderful and enjoyable- I only wish that we had about a week more to spend there hanging out and relaxing. It was a much needed mini-break and I always love heading up there! It’s great to know that Franklin loves Rocky and Kelly and co. so much– can’t wait for the next trip!

A Baseball Bat to the Lower Back

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.

No Better Rainy Day Activity Than Apple Picking

This morning we dropped Andrew’s friend, Lana off at Dulles Airport for her flight to Hawaii! It was early in the morning and about an hour or so closer to Marker Miller Orchards, so we decided to drive all the way on out (rather than drive home and spend 3+ hours to do it again). The weather was freeeezing and rainy, but we got a huge bag of delicious fresh apples, so it was definitely worth it. I’m hoping to make one of these recipes this weekend/week if I can ever dig myself out from under this pile of grad school work and EPA conference planning!

Anyway, we picked a sizeable grocery bag full of apples; choosing from Golden Delicious, Fuji, Crispen, and Roma.. they also had Red Delicious and Ida Red but we weren’t feeling those today. We also spent some time walking around their little store. They are famous for their most delicious cider donuts… just amazing. Last year when we went picking, there was a line about 20 people long and they just kept carting out fresh, piping hot donuts! This year, no real line; the weather seemed to deter the masses but not everyone! One of the guys that works there was super friendly and was telling us that they just ran out of fresh made blueberry donuts but were now onto pumpkin donuts and we should definitely try them… along with a few other choice baked goods in the little counter display. Needless to say, we walked out with a whole mess of baked goods from cider donuts to pumpkin donuts to cinnamon twists. YUM!

Along with the baked goods, we grabbed some small red potatoes, a spaghetti squash, some honey-peanut butter bites (For Franklin), a nice big onion, and a bag of culled pears (we got about 25 for $5)! From there we headed back towards home and made a stop off at Hudson Trails Outfitters to get Andrew a new bike chain and then to Costco to get some new pillows, socks, and pineapple/mango slices (YUMM). Horror upon horror, they were OUT OF MANGO SLICES! That did not make a happy Klasic, but Andrew was quick with the uptake and said “let’s just get a box of mangos.” So we did and it’s just wonderful. I really love mangos.

The rest of the day since getting home (not much of it left) was spent taking a nap (gasp! a nap? I haven’t taken one in years!) and then reading papers for class, writing responses to discussion questions on my class forums, and typing up technical review papers. Dinner was thai food from the Thai Peppers restaurant in Del Ray; I know, we just got a ton of delicious produce, what are we thinking!?! Well, when it’s 10PM on a Saturday and you’ve been working and running most of the day, sometimes you just don’t feel like cooking… plus, I just cleaned the kitchen and I wanted one more day with no messes. That’s not too much to ask, right?

Tomorrow we’re going to bike into DC (can you tell that I’m still gushing over prednisone)? We’re headed to breakfast with some of Andrew’s Cornell friends and then off to see the Solar Decathlon. Then it’s football (and term paper research) time!

Things That Go Bump in the Night

As a recap to my travel post here, I have now completed my recent work travel binge because of Recovery Act oversight dollars. Between July 15th, 2011 and September 26, 2011, I have traveled approximately 23, 100 miles. I have spent at least one night in 16 states. Eeks!

But onto other things… this morning I had my appointment with the Rheumatologist. He was super friendly and listened to me as I recounted my stories and sagas of aches and pains and creeks and cracks. I always feel bad complaining to doctors, but I guess that’s the point, right? Anyway, he moved a bunch of my joints and asked a bazillion questions and reviewed my SI joint xrays and then excused himself from the room.

He returned a little while later to tell me that it appears that I have at least sacroiliitis. It basically means inflamed SI joints. This could be tied to a variety of other issues including auto-immune diseases, issues with my spine, etc. So, he prescribed an anti-inflammatory that he says will be better than Nabumetone (one I was on before). This one is something with an M… can’t think of the name right now. He also told me I was to get xrays of my knees, MRIs of my hips and spine/lower back, and then bloodwork to see if it is an auto-immune issue.

I got my xrays and my bloodwork done at the office. I passed out from giving blood, per usual. I’m not sure what my issue is, but I just pass out… the nurse was super nice and helped me come back to with some smelling salts. Yay! Anyway, at least I have a portion of an answer– yayyy Rheumatologists!

So now it’s on to bigger and better things— and I’ll be back to go over all my test results in two weeks. For now I’m off to go home and make some dinner, do some work, and hang out with Andrew and Franklin. Perfect evening!