Monthly Archives: October 2011

Did Someone Wire My Jaw Shut?

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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

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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

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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.

 

Trials and Tribulations of Enbrel

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As you may recall, I went to my Rheumy two weeks ago on Wednesday during which appointment he prescribed me Enbrel. That day they submitted the prescription and told me that it would need to be pre-approved by my insurance before it was filled so they would let me know when that process was complete so I could pick up the prescription. A week later (this past Wednesday), I called regarding my uncontrollable itching and also asked about the medicine. They nurse said call on Friday if you still haven’t heard anything. Mind you, I’m leaving on Monday for 8 days in Denver for work so I NEED more enbrel.

On Thursday afternoon my Rheumy called me to check in. We discussed the itching and the lack of pain relief in my knees, hips, and back. He told me to take Zyrtec, Benadryl (at night), and to switch to Nambumetone rather than Meloxicam. So, he sent in those prescriptions. I then brought up the Enbrel- he told me to talk to his secretary about it to get it figure out. The woman I spoke with was very nice, however she said “it looks like you didn’t need pre-approval, just go to the CVS and ask them for the prescription. If they won’t give it to you, let us know.” Rather than showing up like a crazed drug addict, I decided to call. After putting me on hold for about 20 minutes, the pharmacist came back on and said there was never a prescription sent over for Enbrel. awesome.

I called the doctor back and after being put on hold explained the situation. She put me on hold again and then came back stating that she was sorry and it never was sent over, the woman with her was on the phone with my insurance currently and it would be taken care of immediately. I then went online to Enbrel Support to register some extra insurance card thing. It’s unclear to me what it is besides subsidies for Enbrel. I don’t know who pays for it (probably tax payers?) or why I get it, but I do, so I tried to register. It sends you through a variety of questions and asks for contact information and then you hit submit. Easy enough- I already had a card from my Rheumy with an ID number. OF COURSE, the site crashed three times.

Finally I gave up and called the 1800 number. I basically spent 45 minutes on the phone with a guy who although very nice, seemed to now know what he was doing. Even though I explained that I had a card already and had just started taking Enbrel, he continued to ask me over and over how many years I have been on Enbrel and if I was just trying to renew my membership. 45 minutes later, he assigned me new numbers and a new card (god only knows when that will get here). The upside: I was able to use the numbers without the card.

I went to CVS to pick up the prescription. After a little wait the pharmacist brought out the Enbrel from the refrigerator (yay!). I handed over my temporary Enbrel support card and he looked very confused and then told me I would have to wait. Fine. About 20 minutes later, they called my name. I’m not sure what they did or what black magic they used, but bam! I had Enbrel! The even better part? IT WAS FREE! No, seriously. I didn’t have to pay one cent for FOUR injectors. I’m not sure why or how, but I will take it.

Down-Side: About 2 full days of my life wasted trying to get a prescription of Enbrel
Up-Side: Four injectors were free

Giving Yourself Enbrel at Home:
In case you’re wondering what the process is like… this is the set up along with the steps you take to successfully give yourself a shot.

 

 

1. Gather Accessories Andrew’s sister-in-law mentioned that it is less stinging if you take the Enbrel out and let it warm up for about 10 minutes. So I tried that…

2. Wash Your Hands– didn’t take a picture!

 

 

 

 

 

3. Swab the Injection Area with Alcohol Swab– note to self, remember WHERE you swab or you will have to do it again. Also, let alcohol dry BEFORE injecting (less stinging).

4. Remove the White Cap from the Injector– the white cap is what covers the needle. I use my teeth to pull it out- works better when you are trying to do too many things at once.

 

 

 

 

 

5. Pinch Area of Skin Where Giving Injection and Hold– this is weird. My doctor told me to do this, although the directions in the kit say to stretch the skin. Either way, I’m sure it is painful.

6. Ensure there are Not a lot of Extra Air Bubbles in the Liquid- They say to do this, but honestly, the more you tap the little liquid, the more bubbles that appear…

 

 

 

 

7. Push the Injector Down Hard- I’m pretty sure the reason is this pushes the needle into the skin. Surprisingly enough, I’ve found myself freaking out with anxiety over the impending stinging of doom that I can really feel the needle. Oh, in addition, the window viewer should be facing you so you can see the liquid draining (I don’t pay attention to the window, usually my eyes are closed and I just listen for the second click).

8. Press the Blue Button on Top- Stinging commence. No really. A lot of stinging/burning. Awesome. When you press the button, you hear a click. The liquid starts to go into your thigh. It feels a lot like a bee with a long stinger that is pushing the stinger deeper and deeper into your leg. You wait. A. really. long. time. Then it clicks again, signally that you are done.

 

 

 

 

9. Remove Injector and Discard into Sharps Container- I’m not really sure what to do with the sharps container once it’s full, but apparently Enbrel Support will give you a new bigger sharps container. Cool, right?

 

 

 

 

 

 

10. Use Gauze to Stop Bleeding and Cover with Mini Band-Aid-Not much bleeding this time! And you’re done!

Jingle Bell 5K and a Hell of a Great Friend

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Last year, Andrew and I decided to run the Jingle Bell 5K in Baltimore, MD.

The event, in which you tie jingle bells to your shoes was developed as a way to raise awareness and funds for the Arthritis Foundation. Last year, we signed up because it sounded fun and because Andrew’s sister-in-law, Mariah, has Rheumatoid Arthritis and we wanted to support her. With the help of a few friends, we raised about $200 or so, dawned our greatest holiday costumes (we went as trees), my friend, Rachel and her boyfriend went as elves, and ran the Jingle Bell 5K in Baltimore, MD. We had a fantastic time and couldn’t wait to do it again this year.

Well, obviously a lot has happened in the past few weeks and I have to admit, my thoughts about the Jingle Bell 5K were there but in the back of my mind. I thought, well, my Rheumy told me I can’t run and Andrew has to have surgery. Maybe we’ll just take a year off and do it next year. That’s where, my aforementioned friend (and one of my bests from High School) showed up. She emailed me asking if we were going to do it again, stating that she was ready to. Her email rejuvenated me and I thought, well, if I can’t run, I’ll walk. At least I’m doing something. Plus, it’s for a great cause. I expected, as last year, for a handful of folks (maybe 4 of us) to sign up. Well, here it is, still 1.5 months out and we have 10 people signed up for our team, “And a Partridge in a Pear Tree.” Not only that, but the team has raised $825 so far! And all because of Miss. Rachel Worthington.

So, while I may not be able to run this year, I will walk my heart out and when I figure out a treatment that works and keeps the AS at bay, you bet your butt I’ll be back on the start line and running. So this is a MASSIVE shout out and a heartfelt thank you to Rachel for pulling this together and re-motivating me to get out there and do something.

So, for those of you reading this, I encourage you to get out there and sign up for your area’s Jingle Bell 5K. It’s not just about running or walking or tying bells to your shoes, it’s about people coming together for a few hours to show Arthritis who is boss, to stare it in the face and say, today, I win. So get out there and walk or run or hop, skip, or jump. Or donate a few dollars to “And a Partridge in a Pear Tree” (Arlington, VA) or Team Z (Denver, CO).

Team And a Partridge in a Pear Tree  (we’re currently in 3rd place for teams)

Team Z  (Look under Team Rank for Team Z, currently in 3rd place)

Thanks again, Rachel, for being one hell of a friend! :0)

I’ve Never Had Allergies (other than bees).

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I’ve never had allergies before… except for bees. I do not like bees. I understand that they are important pollinators, but I don’t like them. When I was younger, I got stung twice (once behind each knee) and had to go to the ER because my throat closed and my legs got so swollen I couldn’t walk. It was awful. Other than that though, no allergies. I always thought, man I’m so glad that I don’t get runny noses and eyes and itchiness. I felt bad for my friends who had to deal with allergies; they can be really nasty.

So, when I called my Rheumy today and explained that I swear I’m not being a hypochondriac and that I really have been itching since Friday’s injection day, I was sure she was going to tell me it was probably just nerves or me trying to convince myself that giving myself injections was a bad idea. You can imagine my surprise when she said, oh it’s probably allergies. Enbrel suppresses your immune system and can make you more susceptible to allergies. Just take a zyrtec everyday and you should be ok, but let us know if it doesn’t go away. Wait, what? What do you mean it’s probably allergies?

So, let me get this straight. I went from some sharp pain literally in my butt to taking anti-inflammatories, giving myself self-injections, and now I have allergies? WTF! I will tell you one thing, my life never has a dull day anymore, that is for sure. So here’s hoping that Zyrtec does the trick and my insane itching goes away. Yay for more pills!

Tired, Itchy, and Calculating Submitted Charges

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Today I am utterly exhausted. Maybe it’s the AS, maybe it’s the 9 hour mandatory office training/retreat that I had today, maybe it’s the lack of sleep, maybe it’s the stress of my GRTS conference coming up next week, maybe it’s the stress of my yet to be determined Halloween costume, or maybe it’s my grad school work.. regardless, I am exhausted. I feel like I have one of those lead blankets on, you know the ones they give you when you get an xray? Well it’s been on me all day or at least that’s what it feels like… on top of that, I itch. Yes, itch. My fingers, my toes, my ankles, my head, my arms, my legs, my back, even my eyelids. What gives? I don’t think itching everyone is a side effect of enbrel and I’ve only given myself one shot so far, so I doubt it’s that, but it still makes me wonder… why do I itch so much?

So, that’s how my day’s going. I managed to answer my smart growth discussion forum questions today, I responded to 15 comments on my term paper presentation (everyone in my class has to comment and I respond), and I wrote a technical paper review on retail LEED certification. I really should have read and written the two other papers that I have that are due tomorrow at Midnight but I’m too tired. Instead, I’m going to try to get up early tomorrow morning to work on them. I have a pretty full day tomorrow between another full day of training/retreat and my annual PARS review with my boss.

You’re probably wondering what the calculating submitted charges means in the title… well, I thought it might be neat to track how much money is submitted in charges for the doctor visits and medications that I’m having/will have. While I’m still awaiting summaries on a few appointments and I need to scrounge up my Ortho appointments, I do have a few… I’ll try to keep a tally as we go, might be kind of interesting :0)

Diagnostic Pathology (at MRI Center): $18.00
PT Physical Medicine: $675.00
XRays and Medical Equipment/Supplies for first Blood Tests: $5,320.00

*does not include full blood tests, TB test, enbrel visit/medication, MRI exams, Orthopedist visits, or SI joint xrays*