Monthly Archives: November 2011

Sleeping in Splints

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First off, Happy Thanksgiving! I’ll write a post about Turkey Day later! Yesterday, I met with my Rheumy for a check-up on how the meds are going, how I’ve been feeling, ailments, etc. As I suspected, I had to get more blood taken to do updated tests and see if the meds are helping at all. I did not pass out and I didn’t even black out! This time the nurse put a piece of paper with some writing on the ceiling and had me try to figure out what it said. Pretty nice of her to do and it did the trick.

As you may remember, I mentioned a few posts ago that I am having more pain and tenderness and weakness in my wrists and fingers. I brought this up to my Rheumy and he did a few tests that included questions, tapping on my wrists, and then holding them face-down in a 90 degree angle (if that makes sense) and seeing what happens. I felt pain and pins and needles. His conclusion was that I was diagnosed with carpal tunnel syndrome. He prescribed me wrist splints which I’m supposed to wear whenever I am not typing. I am also to wear them when I am sleeping. They basically wrap around your thumb and wrists and velcro in the back. Pretty shnazzy… they also have metal bars in the section which runs from your wrist down your fore arm for stability. If this doesn’t help improve the pain/tingling then they can do a full nerve test as well as cortizone shots. I am hoping that the splints will do the trick!

Along with the blood tests and wrist splints, I was also told to increase my nambumetone dosages. I have been taking 500mg twice a day. I am now increased to 750mg twice a day. The Enbrel seems to be helping at least most of the time… other than the random flare ups that I have been experiencing. My Rheumy said that we should see full effects in about 3 months time so I’m hoping that it improves.

As for my swollen ankles, he said it could be a result of the AS but if it continues, it may be worth a trip back to the orthopedist who did my ankle surgery to get it checked out to make sure that everything is good to go and there aren’t any healing issues.

So, I suppose all in all not a terrible follow-up appointment. Being diagnosed with carpal tunnel is annoying and the wrist splints aren’t particularly fun, but it could always be worse and that’s what I keep reminding myself of… so I’ll stick with icing most nights (maybe increase to every night), continue wearing my wrist splints, taking my nambumetone, and injecting myself on Friday mornings. We’ll get there yet!

Tomorrow will be dedicated to term papers, presentations, and figuring out an exercise plan so I can start seriously training for my half marathon. I’ll keep a close watch on my heels and Achilles as they have been acting up and sometime waking me up at night. Always something interesting!!!

Happy Thanksgiving to EVERYONE!

 

PSA: Peas Cold Therapy

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Since I’ve been spending the bulk of this past week checking on and hanging out with Andrew as he works through his surgery, I realize I haven’t posted anything regarding AS in a few days. Yesterday, I went off to CVS to pick-up my next round of Enbrel injections. As you may recall, I’ve been having strange injection reactions but my Rheumy wanted me to continue on the path of Enbrel and not give up quite yet… so I am being patient. Next week I have a follow-up appointment with the Rheumy to see how things are progressing and where we will go from here. I still need to schedule my physical therapy and I definitely am planning on asking about the pain/tingling in my fingers and wrists as well as my swollen ankles, which have been making themselves ever present more recently… particularly on my left ankle, where I had surgery.

Regardless, back to my trip to CVS. First off, I again owed nothing for my Enbrel perscription! Thank you federal employee Blue Cross Blue Shield and Enbrel Support! While I was at the store, I wanted to look for some sort of ice pack that I could use on my knees. It is quite difficult to do routine activities while tryng to hold an ice pack on your knee, so I wanted something preferably with a strap. That is when I found peas cold therapy. They have a variety of ice packs for different body parts and most important to me, they have knee packs. These circular ice packs have straps on them so you can simply freeze, place on the knee, velcro the straps and go or sleep or do what you need to. I will say that the ice packs are convenient. They are filled with little gel balls so there is nothing poking you. They flex and form around your knee. The packs is generally comfortable. I will say that my one downfall to this ice pack is that it didn’t seem to last for an exceptionally long time. I found that after an hour or so I needed to throw it back in the freezer… but, at least it worked for that hour!

Anyway, I figured I’d share with you– it cost about $16 and you can purchase them online or in the CVS stores. I saw on their pamphlet that they also carry a wrist ice pack and a lower back ice pack. I plan on purchasing these… Unfortunately, they don’t have adult ankle wraps, only youth ankle wraps, but perhaps in the future!

Has anyone else tried out this ice packs before? Are there others you like?

The Patient Has Returned

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First off, a huge thank you to everyone who has sent notes and emails, texts and ims and has called about Andrew. So sweet of all of you! Andrew and I drove into GW hospital early on Tuesday morning. We had to be there at 6AM for pre-op. We got in and signed in and met up with his parents. Andrew was immediately called upstairs for some pre-op work but we did get to see him before he went into surgery. He went in about 7AM. The surgeon told us to expect to hear from him around 10. My parents drove down as well so we all got to the nerve-racking waiting game. Around 9 or so, the surgeon came down to talk to us.

The surgery went extremely well- the mass that was to be removed was located in the external layer of the muscle wall (external oblique). That being said, it was not impacted to far so they didn’t have to cut too far into the chest wall. Along with the mass they removed some marginal area to ensure everything was removed. The mass ended up being a spindle cell tumor- low grade malignant. The tumor and the marginal area combined were about the size of a grapefruit. The muscles were then stretched and connected with a series of stitches that had fiber sugars attached to them. These sugars will dissolve and help bind the muscles back together. They left a drain in the wound to drain “muscle binding fluid.” The surgeon seemed extremely happy with how well the surgery went. Andrew had to spend the night in the ICU just to be watched– and on a constant morphine drip.

We spent the day with him. He was super fuzzy and in and out of it (as morphine does to you). On Wednesday, we went back in as soon as visitor hours began and the on duty nurses informed us that he had a great evening and could probably go home today. He was pretty nauseous but had been off of morphine for two hours by the time we had gotten there. As he went through the day, his condition slowly improved and we were able to get him discharged!!! He was discharged with a drain in his incision which drains the fluids surrounding the muscle-binding. In the past day, he has improved leaps and bounds. He is eating crackers, some ramen, and half a bagel. He has been up walking a bit and has been lucid since yesterday (today is Thursday).

So all in all, surgery went extremely well and even though it was a tumor and it was low grade malignant, this should be the course of action. We will see once the full biopsy is complete. All we know now about the tumor is that it is a spindle cell tumor which basically means it is either caused by fat tissue, nerve tissue, or muscle tissue; the biopsy will tell us which and we’ll go from there.

So, thank you again, everyone for your well wishes and concerns! I appreciate them!!!!

 

As for me, I’ve got a follow up appointment next week to see how the past month or so of injections has gone!

My Rock.

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When I had some pretty major ankle surgery including drilling into my bone and inserting some screws a few years ago, Andrew let me stay with him. He took care of me and brought me anything I needed or requested. He helped me wash my hair as I couldn’t shower; he constantly filled up my weird cooler-ice leg machine with fresh ice whenver he could, he kept a schedule of my medication, and he even pushed me around in a wheelchair. And not just for fun. He pushed me in my wheelchair to and from work for about a month and he pushed me all the way to and around the DC Zoo so that I could see the Christmas Zoo Lights show. For anyone around DC, you know what a feat it is to do this work on the hills and mountains of the Zoo/Adams Morgan area. Andrew was my rock.

When I got diagnosed with Ankylosing Spondylitis, Andrew was my rock. He came with me to my MRI and MRI with dye exams because I was scared of getting the dye injected. He sat there in the waiting room for over an hour waiting for me. When I finally go the diagnosis, Andrew came with me to my follow-up appointment so that he could meet my Rheumy and he took notes as the doctor talked and I asked questions. He even came with me when I went to learn how to give myself Enbrel injections on that fateful Friday morning. He gets me heating pads or ice at any hour of the night; he offers to carry things for me even though I yell at him and say I can do it because I want to feel really strong. He goes out of his way to make sure that I am always comfortable or as comfortable as possible.

As I mentioned a few times, I’ve been stressed out with work and school. I come home after work and get to work on school and Andrew cooks. He just goes about his business, puts in his headphones and makes delicious meals and brings them over to me at my desk. He is phenomenal. He is my rock. Through and through no matter what, I know I can count on him.

Tomorrow, Andrew is having surgery to remove a lump that is embedded in his external oblique (abdomen wall). Although he doesn’t seem to show it, I know he is nervous. The good news is that regardless of whether or not the lump is malignant, this would be the course of action; there is no sign of spreading; they are going to remove it and then biopsy it. Then they will reconstruct his muscle wall. The surgery may last anywhere from 1-4 hours depending how complicated things look once they get in there. He may or may not be spending the night at the hospital.

So, today’s post is dedicated to my one and only rock; Andrew. A guy who can make me laugh no matter how awful of a mood I am in; a guy who makes me feel like a movie star with the amount of attention he gives me; a guy who is intelligent, loving, a great cook, a wonderful a boyfriend, a fantastic friend, and just one hell of a great guy. Please think of Andrew tomorrow. I know I will be.

 

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.

Work and Grad School

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The picture at right is my view for the next two days straight… and probably many more, too. I’m getting into crunch time. I have less than a month left in my first semester of Grad School at Johns Hopkins! I am excited, stressed out, and exhausted all at once. I absolutely love my courses (Water Resources Planning and Smart Growth/Urban Revitalization), but whoever even thought about working full-time and going to grad school part-time should be smacked. It’s impossible. My days are constantly consumed by working all day and feeling guilty about leaving work on time and then working at night and feeling guilty about stopping to go to bed or eat dinner or heaven forbid, do nothing. Any free time that I find I constantly feel guilty and like I am wasting that time that could otherwise be put to good use.

This begs the question… did I make the wrong decision to go back to school right now? No. I am glad that I did. As I mentioned before, I love my classes; they are interesting and I’m learning a lot. Do I think that writing 3 papers a week for one class is a little excessive, yes, I do. But, that’s life. The crunch time now is spent attempting to write and edit my term papers. They aren’t really long, but they require even more work because there is a page limit. I often think to myself, one more month and I’m done. I’m free. Then it kicks in. Calculus II. I still have to finish Calculus II.

Before I started this blog, I signed up for Calculus II as a requirement for my grad school program. I have to finish it before the Spring semester begins. I worked on it here and there when I first started it out– I made progress. slowly. Now I am at a point where I am wondering how I am going to finish it. It is a mastery course that consists of about 128 assignments (including 4 exams). As a mastery course, you have to continuously revise your homework until you get 100% on it. The idea is that you walk away really understanding the program. Great in theory, but I am on about assignment #25 and I have a few corrections to make to a handful of previous assignments. My fear is that if I wait until my classes end to re-focus on Calc, I will NEVER have enough time to finish everything including a final proctored exam in time for Spring classes.

Of course in the midst of this funness of work and school I am stuck wondering if medicines will work on my AS and if my pain will decrease and my exhaustion will be squelched (hehe I like that word). In the past two weeks I’ve had an increasingly hard time using my fingers and wrists- they seem to get extremely sore and tight… to the point where I was spraying a spray bottle of cleaner and had to stop because it hurt so much and I felt like I didn’t have the strength. It sucked. It makes me wonder if this will be a re-occurring issue that I will be facing and if so, I will need to figure out a way to handle it; much of my job and certainly the majority of my schooling revolves around typing so that is a must. Guess we’ll see what the Rheumy says at my follow-up appointment next week!

I supposed I will close with this; this is a HUGE shout out to anyone who is working and going to grad school at the same time- I feel your pain.

~Stress is waking up screaming only to realize that you haven’t been sleeping~

My First Month of Ankylosing Spondylitis

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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.