Tuesday, November 30, 2010

Giving Thanks

I had a wonderful Thanksgiving this year - and I have so much to be thankful for!!

I'm thankful that my mom got to come and visit for a whole week! We went shopping, cooked, ate at a delicious restaurant, cheered in a bar when The Rapids won the MLS Championship, and we even took her to our favorite bar to play trivia, which I think she really enjoyed. It was really nice to get to spend some relaxing time with her.

I'm also thankful that my sister, my godmother and her husband, and our friend MS could join us for our delicious thanksgiving dinner. It was great to see them all, and I think everyone enjoyed themselves - cooking, talking, laughing, and obviously eating all evening! We even watched some old family videos, which was a lot of fun. We also got to go to the Denver Zoo with my mom, sister, RK, & MM on Friday. It was a beautiful day and all the animals were out playing. After my mom left, we spent an evening in with my sister and MS playing silly video games and laughing so hard it made my belly hurt. 

I'm thankful that the iron supplements seem to be helping and I am feeling at least a little bit better. Not perfect, not as well as I would like, but better helps a lot

I'm thankful that I am so close to graduating from law/graduate school. I have two more presentations to give - one today and one Saturday (yuck! Saturday!). I have two papers to finish, but  I have already finished rough drafts of both. I can't wait to finally be done with something that has been such a challenge since getting diagnosed with RA, and I am so thankful that I hung in there and accomplished it!

I am also beyond thankful for the unbelievable support I have received from friends and family in my efforts to fund raise for the Jingle Bell 5K Walk/Run For Arthritis. Our team is up to six people and three dogs!! And it looks like my dad might be able to come out for the weekend and walk with us too. 

Most unbelievably, Team Z has already raised $1,595 for the Arthritis Foundation - fully triple my original fund raising goal!!! And there's still two weeks until the event!! I am so very thankful to everyone who contributed. It means so much to me.

If you are interested in making a monetary donation, I'd love it if you would support Team Z or AML & MK's team (who inspired us to start
Support Team Z (raised $1,595 so far!!)

Or join us!! I think it's going to be a lot of fun and I'm really excited about it!

Thursday, November 18, 2010


Since I started my fund raising efforts for the Jingle Bell 5K Walk/Run for Arthritis yesterday afternoon, Team Z has already raised $575 for the Arthritis Foundation - quickly surpassing my original fund-raising goal of $500!!! We've had donations pour in from my family, from APL's family, from friends, and from family friends. It has been an amazing response, and I feel so much gratitude for all this support that I could absolutely burst!!

UPDATE: Not two seconds after I published this post, our total went up to $775!!!!! I can't tell you how excited I am about this!!

With more than three weeks to go until the actual event, I've upped our fund-raising goal to $1,000 - and I'm really excited about trying to reach it. If you are interested in making a monetary donation to support arthritis research, I'd love it if you would support Team Z or AML & MK's team (who inspired us to start)
Support Team Z  (raised $775 so far!!)
Support And A Partridge in a Pear Tree (raised $317.50 so far!!)

And, for serious: if you read this blog and happen to live in Colorado, please think about joining our team and walking with us! We'd love to have you! The more the merrier!! Seeing as I share so much on this blog, you pretty much know me already - and I'd love to meet you! ~;o) Join Team Z!

If you don't live in Colorado, there are Jingle Bell 5Ks happening all over the country! Find One Near You. Do it. You won't regret it. ~;o)

Wednesday, November 17, 2010

Team Z!

I recently found out that my future brother-in-law, AML, and his awesome girlfriend, MK, are running in the Jingle Bell 5K Run/Walk for Arthritis in Baltimore, Maryland on Sunday, December 12th. MK told me she was running in honor of me, because I am an inspiration. This made me feel so good that MK became an inspiration for me! APL and I (and River too!) have decided to walk in the event in Denver, Colorado on the same day! Here's a great video about the event.

I've never been a part of an event like this, and I'm not totally positive about being able to walk 5K pain-free, but I'm really excited to try! I've wanted to get involved with the Arthritis Foundation for a while now - and a couple of days after graduation seems like the perfect time to start!! Hopefully I will be able to raise a little bit of money and get some of our local friends to walk with us. And maybe I'll get the opportunity to meet some new friends who understand what it's like to deal with RA or other kinds of arthritis. That would be amazing too.

If you read this blog and happen to live in Colorado, please think about joining our team and walking with us! We'd love to have you! The more the merrier!! Seeing as I share so much on this blog, you pretty much know me already - and I'd love to meet you! ~;o) Join Team Z!
If you don't live in Colorado, there are Jingle Bell 5Ks happening all over the country! Find One Near You.

If you are interested in making a monetary donation to support arthritis research, I'd love it if you would support our team or AML & MK's team (who inspired us to start)
Support Team Z  (raised $370 so far!!)

In any event, this is the first time - probably EVER - that I have actually thought about my RA and felt excited because of it. I'm excited to get involved! And it's a great feeling!

Monday, November 15, 2010

Iron Party

My most recent blood tests finally came back and apparently I'm anemic. Somehow, my body has developed a major iron deficiency. To celebrate finally having a test that produced a result that actually meant something, APL made an amazing steak dinner on Saturday night. This obviously also served the dual purpose of giving my body some (apparently) much needed iron. We also had broccoli with our steak, so it was like one big, iron party.

The instructions from my doctor include taking 325mg of ferrous sulphate every morning on an empty stomach with a glass of orange juice, which to me sounds like a recipe for barfing, but whatever. If I don't barf, I'm supposed to try to add a second dose later in the day. The doctor says I may need to take iron supplements for as long as six months to rebuild my body's stores of iron. No news on what caused this deficiency in the first place or what it means for the long term.

Here's the rub: I was diagnosed with anemia right before getting diagnosed with RA, so I used to take iron supplements. But, I'm pretty sure APL had me stop taking the supplements because he did some research which found that iron supplements could actually cause joint pain. So taking the supplements could possibly make my anemia better, but make my joint pain worse. I've only traded voicemails with the doctor at this point, so I haven't been able to ask what she thinks of this possibility. I'll have to see if APL still has information on this, as this issue obviously merits a bit more research.

In any event, right now I don't have time for research - at least of the health variety. I just need to finish the semester and graduate already. So for now I'm just going to take the iron supplements. Because, quite honestly, right now I'd trade a little joint pain for some extra energy and a break from this headache that has been pounding for weeks.

Friday, November 12, 2010

Well, Crap

Warning: This post contains details about my compromised immune system that you may consider to be too much information. Don’t say I didn’t warn you. 

Well....crap. Literally. I just left the house for the first time in four days to go down to student health to get yet another blood test (an iron deficiency test this time, I think). The lab tech had a hard time actually finding a vein to use, because my veins are not so good to begin with and they are all still bruised and traumatized from the two times I had to get blood drawn on Monday.

When he finished drawing blood, the lab tech handed me a brown paper bag and asked if I knew what to do with it.  Put my lunch in it? Well...sort of: now the doctor wants a stool sample. Awesome. I have to poop in a cup and deliver it back to student health within half an hour afterwards. I will spare you any more detail than that.

Suffice to say that, considering the way she is testing absolutely everything, I'm beginning to think that the doctor has zero idea what is wrong with me.

Dance Monkey Dance

Sometimes, I take my Ambien and for some reason I still can't fall asleep. At the time I feel totally alert and wide awake - and then frustrated that I'm not able to fall asleep. Rather than tossing and turning in bed and waking poor APL up (because he has to get up early for work) I usually try to find some way to distract myself until I feel like I can sleep. 

But sometimes when I wake up the next morning, I find that I'm  totally surprised by what I did the night  before. Occasionally APL and I will have a whole conversation (that he obviously thought I was alert enough to be having at the time) that I won't remember at all in the morning. Sometimes I'll open my book to my bookmark the next night and not remember reading the last two or three chapters. I never got blackout drunk in college (or at any other time, for that matter) but I imagine it feels something like this: apparently I did things that I can't really remember doing. 

This morning when I sat down to check my email, I noticed a bookmark in my toolbar labeled "Dance Monkey."I had no idea what it was, but I was amused that I was obviously alert enough at the time to think "hey, this is a very useful page! I'll add it to my toolbar so I can access it easily in the future, because obviously I will need to access it often!" It wasn't until I checked out the link that I vaguely remembered playing this game last night and getting frustrated that I couldn't pass level 2!

(1) Maybe I had better add Mail Goggles to my email before I Ambien-email some important person with what I think are clear thoughts. Though, seeing as I really am functioning at the time (even APL doesn't notice a difference) I don't know if it will help...

(2) I bet, now that I'm not Ambiened out anymore, I can totally beat level 2!! (Thanks Ambien me. Way to encourage procrastination....)

Thursday, November 11, 2010

Does RA Run In The Family?

Scientifically speaking, genetics doesn't seem to be the sole cause of RA, though it may be a contributing factor. However, as an RA patient, I can tell you that the single most often asked question when people find out I have RA is "does anyone else in your family have it?"

Until recently, my answer had been limited to my mom's side of the family. My cousin KF (my first cousin - my mom's sister's daughter), who is a few years older than me, got diagnosed with RA a year or two before I did. She has been an amazing source of support for me since my diagnosis. She also told me that our Nana (our shared grandmother on my mom's side) probably also had RA. So that's two on my mom's side of the family. 

As for my dad's side of the family, I'm pretty sure I get my other autoimmune disease from them. I also have Hashimoto's thyroiditis, where the immune system gradually attacks and destroys the thyroid gland. (Interestingly, according to Wikipedia, it was the first disease ever to be recognized as an autoimmune disease. I feel I should get some sort of prize for having it!) I'm not certain whether my family members on my dad's side also have Hashimoto's or just more generalized hypothyroidism, but I know that my dad, my aunt, and my grandmother on that said all have/had thyroid issues.

However, I also recently found out that there is RA on my dad's side of the family as well. My cousin JD (my first cousin once removed - my dad's first cousin) contacted me because she was writing a paper about RA for one of her classes. She told me that her grandmother also had RA. Her grandmother was my great-great-aunt (JD's mom and my dad's mom were sisters). So, while it isn't a particularly close blood relation, it was still interesting to learn that RA had been identified on both sides of my family.

Basically, the family ties to RA are inconclusive. You can get RA even if no one in your family has or ever had RA. On the flip side of that, you can have a bunch of family members who have RA and not get RA (like plenty of my other family members). So, just because I have a history of RA on both sides doesn't mean it's something I would necessarily pass along to my kids. But, even though I'm not planning on having kids this instant (APL is at work - ha!) I have to admit, it does worry me. I would  really hate to be the "reason" for anyone having to go through this type of pain, especially my own baby.

UPDATE: Ok. Apparently trying to figure out family relationships hurts my head just like trying to figure out daylight savings time. (Someone should draw me a diagram!) My cousin JD just pointed out to me that I got the relationship wrong in this post. JD's mom and my dad's mom were sisters - and it was their mom who had RA - and that makes her my great grandmother (my dad's and JD's grandma). So my great grandmother on my dad's side also had RA, which is a closer connection than I originally thought.

Tuesday, November 9, 2010

In Which I Spend 5 Hours At The Doctor And Learn Very Little

Yesterday morning, I finally called student health and made a same day appointment. APL and I debated the merits going to the doctor pretty much all weekend. Since I have to go during the week, while APL is at work, that means I have to go alone - which takes an awful lot of physical and emotional energy for me. Also, since my symptoms are pretty non-specific right now (fatigue, headache, general body ache), I was pretty worried that my concerns would be dismissed and the visit would be a waste of my time. But, in the end, we decided I was not getting any better so it was time to get checked out. 

After calling at 8:00am to make the appointment, I went back to sleep until I had to get up to leave around 1:00pm. I grabbed an apple to eat in the car on the way down there, but I purposely didn't eat anything else. I'm so used to dealing with feeling gross and moving on that sometimes I have a hard time getting doctors to understand (and believe) exactly how bad I feel. I knew I would feel worse from not eating, but I figured that the crummier I felt at the appointment the easier it would be to explain myself. I figured the appointment would last less than an hour and then I could go get something to eat. 

Unfortunately, this plan both worked and backfired. Despite my lack of concrete symptoms the doctor seemed pretty concerned about my current condition. She examined me, put in a call to my rheumatologist, and then sent me to get some labwork done. (On a side note: When I got to the lab, I discovered that all the pretty pictures of scenery that had been on the wall were gone. I asked the lab tech what was going on, and he told me he thought my Favorite Lab Man was leaving!!! Noooooooo!!!! On the other hand, guess I'll be leaving student health pretty soon too. And the new guy did a pretty decent job drawing three tubes of blood.)

I didn't get to go home or eat after the blood test. The doctor told me to sit on a chair in the hallway while she waited for the results and to hear from my rheumatologist. So I sat. And I waited. And waited. And waited. And all the while I was feeling grosser and grosser from already feeling gross and from having nothing more than an apple in my stomach. 

Finally the doctor checked in to say she was still waiting. At this point, I tried to get her to let me go home, but she said she wanted me to stay. I said I needed to eat something and lay down. But, instead of letting me leave, she had one of the nurses set me up with an exam table to lay on and the gourmet lunch pictured above (small bowl of neon-yellow chicken noodle soup, eight saltines, and a tiny can of ginger ale). But, as opposed to waiting in the hallway, I was grateful. So I ate it and then tried to rest on the short exam table.

What seemed like a trillionty years later, the doctor finally came back in and sent me back to the lab for a urinalysis and another blood test. So I ended up getting blood drawn from both arms yesterday. Then I waited some more. And some more. I asked a nurse if they had forgotten me. The nurse said no, they were still waiting for results. I asked if I had to stay. The nurse said they usually want you to stay when it might be something serious (awesome bedside manner, nurse!) Eventually, my friend RK showed up on her way home from work to wait with me and make sure I was ok. (RK's the best!)

Finally, as student health closed for the night and the janitors came out, the doctor came to talk to me. What she said at this point, to be honest, is not quite clear to me, as I had been at student health for literally five hours and eaten almost nothing all day. But basically she said she was worried that I might have an infection that was causing my fatigue and systemic issues. With the RA and the Enbrel, an infection can be a big problem. But, so far my lab tests had come back clean and she didn't know where the infection was. She said she was still looking for it with the rest of the blood tests.

The doctor also said that sometimes when people take prednisone for extended periods of time, their adrenal glands can essentially stop producing hormones on their own, and this could be part of my problem (a.k.a. I'm pretty sure prednisone is the DEVIL). Somehow, the solution to this is to take a short course of prednisone, which makes no sense to me whatsoever. It also doesn't make sense to me to be taking steroids when I might have an unidentified infection. But, since the doctor said it and she conferred with my rheumatologist and I feel to ill to really fight about it and I really need to finish this semester so I can go ahead and graduate, I'm just doing it. 

It was dark when I finally left student health. And I woke up today not feeling any better or having any more answers. I'm not really sure what to do next other than keep resting and try to graduate. So I guess that's what I'll do.

Monday, November 8, 2010

Biosimilar? No Thank You

I know I complain on a fairly regular basis about the cost of biologics (like Enbrel, which I am currently on, and Remicade, which I used to be on). However, I have to admit that I haven't spent a lot of time looking into the safety issues associated with biologics. To be perfectly honest, this is mostly because it freaks me out, and my desire to feel better has been at a point where I'm willing to trust my doctors about the issue. 

In any event, APL found this interesting article about biologics in the Huffington Post. I thought the article did a really good job of explaining how biologics are different from other types of prescription drugs and highlighting some of the safety issues involved with attempts to reduce costs:
Biologics are different from typical chemical prescription drugs in important ways. Generic drug companies can make virtually identical copies of non-biologics like Lipitor and Prozac. Once the original drug maker's exclusivity period expires, generic drug makers can apply for FDA approval, piggybacking on the original company's safety and effectiveness studies, rather than spend millions to develop their own. As a result, the company can offer generic drugs at a fraction of the original cost, allowing patients to save dramatically for medicines of equivalent safety and efficacy. 

Yet biologics are different: just as no two living things are precisely identical, it isn't possible to create a truly identical "generic" version of a biologic drug. At most, a second-generation drug maker can create a version that is similar to, but not the same as the original -- thus the term "biosimilar." But depending on how similar it is, a "biosimilar" may or may not be equally as safe and effective as the original biologic.
The article then goes on to criticize pharmaceutical companies that are arguing for less stringent safety standards in the FDA approval of "biosimilar" drugs, with the justification that it will save on costs. I have to say that I tend to agree with the author. While I'm not thrilled about the high cost I have to pay to get the benefits of these drugs, I'm already a little bit wary about their safety and efficacy. And, as much as I want to feel better, I don't think I'm willing to risk my body any more to save a few bucks.  

Although I have to admit, the idea of using vampire bat saliva is pretty cool....

Saturday, November 6, 2010

5th Annual Pumpkins!

I couldn't resist posting this picture - the result of our 5th Annual Pumpkin Carving Party. The pumpkins all turned out pretty darn awesome this year, if I do say so myself.

Or Maybe I've Been Halloweened!!!

After re-reading my last post, I've decided that maybe I shouldn't completely blame my current weakened condition this week on the sick students. To be fair, I did have a pretty fun-filled (and relatively exhausting) Halloween weekend.

The weekend started when APL and I went to a costume party at our friend MM's house on Friday evening. If there had been a costume contest, I swear we would have won because we had the most awesome costumes ever (I am ever so humble!) We went as Zap Brannigan and Leela from Furturama. I even had a Nibbler purse! The party was a blast!! Our awesome friend MM even put a bench in the basement especially so I would have someplace to sit down - and he ordered my favorite beer (for the record: Mama's Little Yella Pils from the local Oscar Blues brewery). Due to MM's thoughtfulness I was able to sit down for most of the evening and save my energy, but we still stayed out very late that night.

On Saturday I literally stayed in bed until 5:30pm, whereupon I got up and got ready for the next party: our 5th Annual Pumpkin Carving Party. This was pretty much a chill evening at home where our friends all came over to carve pumpkins. We ended up with some awesome jack-o-lanterns this year. I did Leela. APL made a crazy sun/cloud/lightning bolt design. We also had a mummy, a Jack Skellington, a creepy guy peeking through the blinds, a fire breathing tree (yes, you read that right), a candle, a dark mark (re: Voldemort), a bat, a Cartman (re: South Park), and a barfing pumpkin. After we finished carving, we lit them all and turned off the lights and sat around in the dark living room talking and enjoying the glow.

I slept until about 3:30pm on Sunday, but despite the extra sleep I was still feeling pretty beat by the time I got up. But, Sunday was actually Halloween so I couldn't just stay home! We got dressed up again and continued our tradition of going downtown to eat pizza and check out everyone else's costumes. Unfortunately, after not eating much that day, I made the bad decision to take a vicodin on our way downtown because the joints in my legs were really bothering me. When my friend RK had a costume/wardrobe malfunction that required me to kneel down and help her with several safety pins, I got dizzy and ended up throwing up all the meds before dinner. But I felt better after that. I ate a few pizza crusts, checked out the crazy people that is a Boulder Halloweeen, and went home early. 

So, you see, maybe it's no wonder that I only lasted until 1pm on Wednesday this week after that weekend. Maybe it's no wonder that my immune system is a little extra compromised this week. I'm not saying that it's ok for my sick classmates to cough on me or anything - just that maybe I had a little something to do with it too. (Though heaven forbid I have a fun weekend.)

Lysol Rambo Is Sad

Sadly, I never did get that lysol gun. And, though I did my very best to avoid being near sick students, they were literally everywhere. It was physically impossible for me to avoid them and go to class (or even leave the house) at the same time. And unfortunately, as predicted, my poor immune system had no chance whatsoever. After muddling through a presentation I had to give on Wednesday morning, I ditched my afternoon class, went home, dragged myself upstairs, and fell into bed. I have pretty much been there ever since. 

This makes Lysol Rambo sad. Totally should have gone rampaging with the disinfecting supersoaker.

I've been sleeping half the day and too tired to do much of anything other than move from the bed to the couch during the the other half. My entire body aches and I am so exhausted I can barely move. And my head has been aching almost constantly for several days. I'm not sure if I have a cold or the flu or just a really bad RA flare - or all of the above - but I don't think there exist words to explain how exhausted I am right now.

To make matters worse, I was so out of it this week that I totally forgot to call in a refill for my Enbrel prescription. APL called the pharmacy first thing this morning (we go to Costco now after one too many fails at student health), but they can't get it until Monday because they have to order it. So, although I'm supposed to have my injection today, I guess it will have to wait until Monday. Which will probably mess me up even more. Though I guess if I am actually infected by some stupid sick student germs I probably shouldn't be injecting immune suppressants into my system today anyhow.

Now that I am upright and at my desk, I will attempt to work on the presentation I have to give on Tuesday. ::sigh:: When this semester ends, I swear I'm literally going to do nothing for a month.