Tuesday, December 14, 2010

The 2010 Jingle Bell 5k Run/Walk for Arthritis

Sunday was a gorgeous, sunny day - the perfect day to take a walk!! So my team of 9 friends (and 3 dogs!) went down to Denver to walk a 5k through a park and around a lake to show our support in the battle against arthritis. The Denver walk this year had record-breaking attendance - there were more than 2,000 people there!

Apparently, this year was also a record-breaking year for fund-raising for the Rocky Mountain Chapter. One of the Arthritis Foundation volunteers told APL that we raised almost $90,000 for arthritis research with this walk!!! We had a lot of fun too!

I am also happy to report that Team Z was responsible for $3,300 of the funds raised that day!! We walked in honor of our donations from 71 people and 1 company (APL's work!) For those of you who donated, all of your names were on the back of my shirt when I walked - so you were all there with me!

I'm also super excited about the fact that my friends and family walked coast-to-coast against arthritis on Sunday. AML and MK ran in Baltimore (dressed as Christmas trees, no less!). Then we walked in Denver. Then my sister, her boyfriend, and their friend LB ran in Seattle. Between the three teams, my friends and family have donated about $4,000 to the Arthritis Foundation this December. And that is pretty amazing.

Thank you to everyone who supported Team Z!

I'm feeling a bit tired after the end of school and the walk, but I'm so glad that I participated. I hope I can get more involved with the Arthritis Foundation - doing positive things with my RA - from this point, forward!

Saturday, December 11, 2010


I've been suspicious about this problem for a couple of weeks. At first, I tried to convince myself that I was overreacting. That I was just noticing something totally normal or I was just under too much stress. But, after watching the problem for a couple of weeks, I'm pretty certain it is not normal. I'm pretty certain something is wrong.

My hair is falling out. 

Not in huge quantities - I'm not going to be bald by next week or anything like that. But certainly a lot more hair is falling out than should be or usually does. Every time I touch my hair I come away with what seems like a handful. And more hair has been falling out in one shower than usually falls out in a week.

I know that a lot of the drugs I am on - particularly methotrexate - can be responsible for hair loss. Luckily, I have am appointment with my rheumatologist this upcoming week, so I can ask him what he thinks is causing it and what we can do about it. Hopefully we can find a way to stop it before it really becomes a problem.

In the meantime, it obviously doesn't make me feel particularly fantastic. Especially considering I have cold sores in both of my lips right now. My lips are a bloody mess - and not the cute, English slang kind of "bloody." The ugly, blood kind of bloody.

I know neither of these things are the end of the world. And I am very grateful that it isn't worse.  The cold sores are on my lips are not even that noticeable and no one but me can see the hair loss. But when I'm already tired and achy and a little bit grumpy, it can seem like a lot to bear. Especially when I can't help but picture myself bald and bloody on my wedding day. ~;o(

Thursday, December 9, 2010

Mariah = RA + MS + JD

Yesterday I turned in my final final paper and I am now officially finished with law school and graduate school!! I now have several important letters I can put after my name: MS and JD.

Although I'm pretty exhausted and I can feel a big crash coming on, I am happy to report that I feel considerably more satisfied with this accomplishment than I felt over the summer when I finished my last law school class. I actually feel relieved and happy, which I'm pretty excited about!! And I'm also feeling pretty proud of myself - I may have been diagnosed with RA halfway through law/graduate school, but I still finished.

So that, my friends, is the end of THAT!! ~;o)

Tuesday, December 7, 2010

Enbrel Bruise

I am so very sorry to do this to you fine people, particularly considering the very uplifting content I have had on this blog recently, but I am faced with the overwhelming desire/need to share this monstrosity of a bruise with someone. Unfortunately, that someone is you. 

I thought about putting my ordinary "this is disgusting" warning on this post, but if you are already reading this, you have most likely already seen the disgusting image. Clearly something went wrong with my Enbrel injection this week. After APL gave it to me, the injection site on my thigh swelled up into a big, nasty lump. We iced it for several hours and the next morning I had what is almost certainly the most purple bruise I have ever had. It grosses me out every time I look at it, and somehow I thought it would help to make you look at it? Interesting logic, there, Mariah.

Whatever went wrong, I hope we can avoid it in the future, because it looks like it is going to take several weeks for this bruise to heal. You could fit two quarters on top of that bruise. If I got one of these every time I did an Enbrel injection, I'd look like a dalmatian and/or APL would get investigated for spousal abuse. 

In the meantime, please excuse the nonsensical-ness of this post. I am trying to finish my last graduate school paper EVER and I am having extreme difficulty concentrating on it!!

Monday, December 6, 2010

My Incredibles (updated!)

Everyone reading this blog knows that, over the past two and a half years, I have done little more than deal with RA and try to stay healthy enough to graduate from my dual degree program at CU. I really haven't had the time (or energy) for much else. But I am finally about to graduate - this very week, in fact!! 

In celebration of my graduation (and accomplishing it despite RA), APL, River, and I will be walking in the Denver Jingle Bell 5k Run/Walk for the Arthritis Foundation on Sunday as Team Z. We'll be joined by 6 local friends: RK, MM, AN, PN, TL,  HL, and CV (plus two more canine friends - Buddy and Charlie!). We'll also be walking "with" my sister, her boyfriend, and their friend LB, who will be participating in the Seattle event. And of course MK and AML and their friends, who will be running in Baltimore.

Right now, Team Z is actually the top fund raising team in Denver. We have raised MORE THAN $3,000 Arthritis Foundation!! This amount is more than SIX times our original fund raising goal!!! And, if you count the funds raised by our "sister" teams in Baltimore and Seattle, my friends and family are responsible for contributing over $4,000 to the Arthritis Foundation this December!! So thank you! I am so very excited to make such an amazing contribution to the Arthritis Foundation and to do something so positive with my RA.

But, honestly, what has been most amazing to me in this whole fund raising experience is not the amounts that people have donated, or even the impressive total we have raised. What has meant the most to me is that so many people have donated. My parents and my sister and my aunts and uncles and cousins. Austin's grandma and aunts and uncles and cousins. My future in-laws and their friends. My sister's friends (some of whom I've never even met). Friends in Bolder who can't join us for the walk. Friends from high school. My friends from college (some of whom I have barely talked to in the past 5 years). Law school friends. My neighbor. My roommate. Austin's work.

Whether you contributed $10 or $200, when I walk that 5k on Sunday I know I will have the love and support of SEVENTY PEOPLE. And that is worth more to me than I can say.

So thank you. All of you. So much.


Specifically, I'd like to thank (in alphabetical order):
  1. AJ K.
  2. Alex L.
  3. Alex N.
  4. Angel P.
  5. Andrew L.
  6. Antoinette C.
  7. Azad B.
  8. Barbara L.
  9. Becky P.
  10. Becky Z.
  11. Ben L.
  12. Benjamin C.
  13. Bernie F.
  14. Brian K. 
  15. Carlos V.
  16. Carole D.
  17. Charlie L.
  18. Chris D.
  19. Debra S.
  20. Elise A.
  21. Erica K.
  22. Ernie T.
  23. Ernie Z.
  24. Everon Technology Services
  25. Gesa L.
  26. Halli B.
  27. Hayley L.
  28. Hilary L.
  29. Jack D.
  30. Jack Z.
  31. Jake A.
  32. Jan R.
  33. Jess T.
  34. Jessica P.
  35. Jia T.
  36. Jill C.
  37. Jody L.
  38. John T.
  39. JoyT.
  40. Kathy A.
  41. Kelly A.
  42. Kipp C. 
  43. Laura S. 
  44. Lauren K.
  45. Leanne H. 
  46. Libby C.
  47. Leo D.
  48. Lindsey B.
  49. Logan B.
  50. Louise F.
  51. Marian S.
  52. Marianne Z.
  53. Matt M.
  54. Meghan K.
  55. Mike T.
  56. Mindy L.
  57. Nancy K.
  58. Nick K.
  59. Paris N.
  60. Paul D.
  61. Rebecca K.
  62. Sallie J.
  63. Sarah Z.
  64. Shar R.
  65. Steve C.
  66. Steve S.
  67. Stuart R. 
  68. Sylvia Z.
  69. Tei L.
  70. Tim L.
  71. Tracy R.
  72. Wendy Z.
 If you'd still like to join or donate to Team Z in Denver, please click here. (If you want to walk with us, registration closes online Friday at noon!! Again, please feel free to join us - even if we've never met!!)

To join or donate to MK & AML's team in Baltimore, please click here.

To join or donate to my sister's team in Seattle, please click here.

Jingle all the way!! 

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.

Thursday, October 28, 2010

Lysol Rambo

I really love fall in Boulder - the leaves change colors and the snowline moves closer and closer down the mountains towards us. The air turns crisp and clean and cold, but it's almost always still sunny and gorgeous. But there is one thing that I really hate about the first few days of cold weather in Boulder: sick students.

At first, it probably doesn't make a lot of sense to hear someone with an autoimmune condition (i.e. someone who is sick all the time) say that she hates sick students. But read that sentence again: as someone with an autoimmune condition, I hate sick students.

I know, obviously from personal experience, how much it sucks to be sick. It's no fun not to feel well. But here's the thing: when you feel sick, stay home. I don't hate you because you are sick - I hate you because you are wandering around campus sniffling on everybody. You're coughing next to me in class. You're sneezing on me on the bus. And all the while you're complaining loudly about how sick you feel!! GO THE HELL HOME!! You're going to get your perfectly healthy classmates sick!! Your immune compromised classmates who inject themselves with immune suppressants every week (i.e. me) will have no chance whatsoever!!!

Yesterday, in response to these complaints, one of my friends told me I should just Lysol everybody on campus - i.e. Lysol as a verb, which I loved. We decided we were going to make me a Lysol Gun. 

Part 1: Supersoaker
Part 2: Lysol
Part 3: Run across campus like Rambo and disinfect every inconsiderate contagious student!!! 

Many Much Snooze = Give Up?

I've been having a lot of trouble getting out of bed lately. I've just been so tired that it's almost impossible to get myself to wake up. Then, once I finally wake myself up, it takes almost as long to convince my body to move. Which sucks.

But today I discovered yet another challenge: if I hit the snooze button on my alarm clock for over two hours (told you I was having trouble) then the whole alarm turns off and resets for tomorrow. I find this problematic. If it has already taken me two hours to wake up, shouldn't I need to get up more, not less?

Or is my alarm clock telling me that it's ok to just give up and go back to bed if it's really taking me more than two hours to get up? Hmmm.....

Monday, October 25, 2010


I feel like an oxymoron. (Or maybe just a moron?)

I've been having really bad pain in my legs for a few weeks - my knees and feet have been giving me a lot of trouble, and so the muscles in between feel like they are made of fire all the time. It hurts to stand. It hurts to sit. It hurts to be. APL and I are also dealing with some pretty serious financial issues. And I'm so over being a student, but I still have homework to do every day. I'm stressed out and more exhausted than I think I've ever been in my life.

But, despite my exhaustion, it takes me hours to fall asleep every single night. I guess this part makes some sense - exhaustion doesn't necessarily lead to sleep (though that feels like an oxymoron all by itself!) Every night I take medicine and vitamins specifically to help me sleep. I light a scented candle, turn on my humidifier, and relax before trying to fall asleep. It still takes hours to get to sleep.

But then, even though I can't fall asleep, apparently I can't wake up either!! Lately it has been taking me literally hours to haul myself out of bed in the morning (or afternoon, as the case may be.) Sometimes I can't make myself wake up, so I press snooze a hundred times or accidentally fall back to sleep for several more hours. Sometimes I'm awake, but I just can't make my body move out of the bed. Sometimes it's both. Today, for example, I wasn't able to make myself get out of bed until 12:45pm. I'm having trouble making it to my classes on time and my earliest class is at noon!!

The solution to this difficulty getting up seems to be to go to bed earlier, right? But I can't fall asleep!!! Hence, oxymoron. Or moron. Whichever.

::sigh:: I'm a grumpy bear today. ~;o(

Wednesday, October 13, 2010

Foreign Language Study: Health Insurance

Health insurance is like an impossible foreign language that I seem to be  totally incapable of understanding. I can read two different Japanese alphabets and identify hundreds of Chinese characters, but I can't understand health insurance. In two more months I will graduate with two advanced degrees, but I'm pretty sure I still won't be able to understand health insurance. 

Also, trying to figure out health insurance is like a full time job for which I do not have time (or energy). But, over the past two years since getting diagnosed with RA, I have made at least a little progress in understanding what is covered by my own student health insurance plan. Or so I thought. 

When the health insurance paperwork arrived in August, I actually went through it instead of just signing up for it the way most students probably do. As far as I could tell from my scrutiny of the paperwork the university provided, it was the exact same plan I've had for the past two years - the one where I needed to come up with a way to pay an extra $800 a month for my Enbrel

So imagine my surprise when APL and I went to pick up my last 4 dosages of Enbrel and we only got charged $60. And this was without any additional support from EnbrelSupport or any other program!! Not that I'm complaining - obviously my inability to understand my own health insurance actually worked out in my favor for once! But I just couldn't figure out how the exact same health insurance plan could give me such different benefits this year.

Finding the answer wasn't easy - it took a whole afternoon of calling and searching through convoluted health insurance websites. But, eventually, I figured it out: the university student health programs used to be undewritten by Aetna, but now they are underwritten by United Healthcare. And, even though the school documents show it as essentially the same plan as last year, apparently United Healthcare has way better prescription coverage than Aetna did. In this case, it has worked out awesome for us - $60 a month we can afford!!

But it got me thinking about health insurance more generally, and I find the more I think about it the less I understand it. As someone with a pretty major (and pretty expensive!) preexisting condition, I am never going to have much choice in my health insurance (unless there are some pretty big changes in our health insurance system as a whole.) I will only be able to get insurance through my school, my job, or my husband's job. (I'm already 27, so no luck for me on Obama's plan to give you coverage under your parents until 26). Because of my preexisting condition, I pretty much have to take the best insurance I can get and run with it - right now the best I can get is student health through the university.

Which got me thinking: what if it had gone the other way? What if the university had switched from United Healthcare to Aetna? What if my co-payment for my Enbrel had gone from $60 to $800? I would have no choice in the matter but to pay the higher co-pay - the one I definately can't afford. Under the "same" student health plan, I would suddenly go from being able to treat my RA to not being able to afford to treat my RA. 

How does that make any sense at all? How is that fair? Like I said, I don't understand health insurance.

Wednesday, October 6, 2010

Dear Targeted Adverstizing: I Hate You

Only a few moments ago, I was enjoying some soup for lunch and amusing myself by looking at silly things on the interwebs when I was very rudely accosted with this flashing disaster of targeted advertizing:
I have RA and I:
(a) was able to get out of bed more easily
(b) brewed myself a pot of coffee
(c) found a treatment that works for me
(d) all of the above.
 Learn about a treatment option that may help you do more on your own (for moderate to severe rheumatoid arthritis)
Oh! Be still my beating heart! This treatment will help me get out of bed AND brew a pot of coffee? Holy shit! My problems are solved! My sadness and frustration over my physical limitations have evaporated! Will the wonders never cease? Who needs grad school or a job or a family or the ability to travel when I can look forward to a life of getting out of bed AND making coffee!!

Tuesday, September 28, 2010

Eight More Months!

APL and I are getting married exactly eight months from today! I can't wait!

Monday, September 27, 2010

Two Years of Going Forward

Yesterday, APL and I were in Rocky Mountain National Park, relaxing and enjoying the golden aspens and the elk, the same thing we've done on the last weekend in September for the past two years

Yesterday was also the two year anniversary of my very first blog post. Over the past two years I have written 244 posts on this blog. This one is 245.

It's interesting to look back over the ups and downs I've had since getting diagnosed with RA and starting this blog. In some ways I'm still the same crazy over-achieving driven person (I just got a letter from the law school saying I made the Dean's List last semester.) But in other ways I've changed a lot (I move a lot slower and do a lot fewer things, but for the most part I'm ok with it).

I may be going slowly, but at least I'm still going forward, one day at a time. From this point. Forward.

Friday, September 24, 2010

The Incredible Sulk

I am not really a comic book person, but I'm beginning to wonder if my alter ego might actually be related to The Incredible Hulk (a.k.a. a giant, raging, humanoid monster). 

Today one of my classmates was complaining about how stressful it is to be training for a marathon. I wanted to grab him and shake him silly. Yesterday a friend was reasonably upset with her roommate over some dirty dishes in their sink. I wanted to smack her up the side of her head. Another friend posted about feeling a little sick in their Facebook status. I wanted to respond with many profanities.  I've actually taken out this  type of frustration on poor APL in the past.

Here's what's provoking my raging thoughts: I am actually really jealous of my friends' problems. I would be totally happy to feel sick as a dog today if there was even a remote possibility of feeling 100% better tomorrow - or even next week or next month. I would deal with horrible dirty dishes in my sink every day for the rest of my life if only it didn't hurt to wash them. Even though I have always hated running, I would make myself enjoy the stress of training for a marathon if my joints just felt well enough to do it.

I realize that these are totally irrational and unfair comparisons - between the things I deal with every day because of my RA and my healthy friends' real life problems. And I completely recognize that my friends are entitled to their own problems. I even want to hear about their frustrations and try to help, because that's what friends do.

But some days I'm dealing with a lot of joint pain, or fatigue, or I haven't been sleeping well, or the pain in a single joint is hijacking my brain, or sometimes all of the above. On those days, I can't stop myself from having my little self-centered silent rage tantrums every time my friends complain about problems I would trade mine for in a heartbeat. I still try my best to offer my support or at least just listen quietly. But I get all angry on the inside. Maybe I haven't quite dealt with the "for the rest of my life" part of the diagnosis as well as I thought I had. I feel like a four-year-old shouting IT'S JUST NOT FAIR!!

But guess what, kid: life is not fair. And you better figure out some way to deal with your feelings like a reasonable human being, because I doubt The Incredible Sulk has very many friends.

Thursday, September 16, 2010

Gold Star

After months and months and months of fighting with my stupid blood pressure, it was finally normal when I went to see my doctor this morning!

I get a gold star.

Better Than You!

I always make a point to be friendly to bus drivers whenever I get on the bus. Yesterday, I got on the bus and said "hi, how are you?" to the driver. He looked down at my bandaged hand and said "better than you!"

Now, don't get mad at the bus driver. He said it with a smile and actually in a nice way (believe it or not). He waved at me to sit at the front of the bus and then went on to ask me how I had hurt my hand and told me his wife had trouble with her wrist too. He was just making friendly conversation.

But here's the thing: he was totally right.

He was doing better than me. He was smiling and making friendly conversation. He had music on in the bus and was grooving a little bit at all the stoplights. He was driving a bus in circles all day and actually seeming to really enjoy it. The bus driver was happy.

As for me, I had hit snooze button for literally an hour and a half that morning before being able to pull my already exhausted and seriously achy body out of the bed. I barely had time to eat three bites of cereal before I had to go to my first class, that not a bone in my body or a brain cell in my head was interested in attending. I gritted my teeth through an hour-long debate on the merits of ethanol for the hundred millionth time in my academic career (corn-based, no; cellulosic, maybe. Same as last time.)

Then I had four tubes of blood drawn for my doctor's appointment the next day (though thank goodness for Favorite Lab Man, who can draw four tubes of blood without any pain or leaving any mark!) I had gotten on the bus to go work on citations and grab a bite of lunch before heading to a three-hour long policy seminar that would last until 6:00pm in a room that was usually way too warm, for which I hadn't done a single word of the reading. I was feeling totally miserable.

While I ate lunch I totally ignored the citations I had meant to work on and thought about the bus driver's joking comment. When was the last time I felt happy?

As I thought about it, I realized I actually feel happy quite a lot. APL and River make me happy every single day. My friends make me happy. My sister and my mom make me happy. My cousin and her daughter make me happy. Traveling makes me happy. Wedding planning makes me super happy, and I still feel a little bit giddy every time I look at engagement ring.

I realized that the problem isn't my life, per se, but my "career" - the things I force myself out of bed to do every day and the "path" that I am on. When was the last time that made me happy? I can't  even begin to remember. I know I wasn't very happy when I actually completed my J.D, which I didn't expect at all. And I remember feeling lost and unfocused about my path over six months ago - have I made any progress since then? Not really.

I am going to finish my Masters in Stubborn. I am going to graduate with my two fancy degrees in December. But after that? I need to do some serious thinking about what I want to do with my life.

But I have made at least one decision: someday, I want to be as happy as that bus driver.

Monday, September 13, 2010

Holy Mongolian Fire Oil!!

My hands have been extremely painful for about a month now. I suspect the pain originally started from overuse in two ways. First, I let my painfully adorable 2 year old cousin do sit-ups on my lap, using my thumbs to pull herself back up. Probably shouldn't have done that, but I just couldn't resist her cuteness and her desire to play with me. Second, while RK and I drove from Ohio back to Colorado, we got totally sucked into playing this trivia game, Sporcle, on my iphone. I probably shouldn't have spent so many hours keying in our answers on my little phone with my thumbs, but we were enjoying ourselves so much and it really helped us pass the long hours.

After I got home, I thought if I just tried to rest my hands, I would be fine. But it turns out that it is nearly damn impossible to actually rest your hands unless you just never get out of bed in the morning. Because you use your hands for everything. So, though I was doing my best to rest my hands, particularly my more painful right hand, the pain just seemed like it was getting worse and worse. In class one day last week I accidentally hit my hand on the desk and it hurt so much that I literally had to close my eyes and concentrate on not vomiting. Time to call the doctor.

I called Nurse Connie and told her the pain was making me want to vomit. She got me in to see the physician's assistant that same afternoon. And while I was talking to the PA, my rheumatologist even stepped in to check on me quickly too. I am really grateful for the team at that office since they always take such good care of me. They all poked and prodded around the base of my left thumb, trying to figure out if it was tendinitis or arthritis of my lowest thumb joint. 

In the end they couldn't tell for sure, so we decided to treat the tendinitis for now. The PA took an inch-long needle and stabbed the length of it into my thumb, so she could put prednisone all along the tendon. It wasn't pretty to watch, but compared to how much that sucker already hurt it barely hurt at all. She said it might take three or four days for the full effect.

This is where the Mongolian Fire Oil comes in. It has been three or four days and my hands, particularly along my left thumb, are still killing me. I'm starting to feel confined by what I can and can't do with them. But, in any event, I set out to cook a special dinner for APL - delicious Asian lettuce wraps that I had when I visited my cousin. Her recipe didn't call for Mongolian Fire Oil, but I was going to add some because APL loves that stuff. 

I was reaching into the cabinet over the stove to get the oil, and then....One minute the bottle was grasped in my hand....the next minute it just...wasn't. My grasp had failed and the entire unopened bottle of Mongolian Fire Oil hit the stove top and shattered into a billion pieces, spraying sticky orange oil everywhere. And I just looked at my hand and couldn't figure out why it hadn't worked. My hand just hadn't worked. My joints didn't stay bent to keep me grasping the bottle. And I looked at the mess and wondered if my hands would behave well enough to clean it up.

Luckily, APL arrived home at that moment and took over cleaning up the glass so I wouldn't cut my hands to smithereens trying to clean the glass myself. After that it was just a matter of sopping up the beloved oil with paper towels so we could throw it away, and I could do that. And in the end, I managed to cook the dinner and everyone agreed it turned out delicious.

But I'd like my pain-free hands back now. I really didn't like the feeling of helplessness I had today when I looked at the shattered bottle and the Mongolian Fire Oil spilling out all around it.

Thursday, September 9, 2010

I Don't Know How

After a wonderful week of wedding planning, APL, RK, and I got up at 5:00am to drive the two-ish hours from Groveland to Sacramento and catch out fight back to Colorado. Needless to say, getting up so early after so little sleep and such a busy week was not good for me. I was a wreck before we even got in the car. 

I piled into the back seat and tried not to think about my achy joints. I especially tried to ignore my knees, which were super achy from trying on wedding dresses and getting up and down off the floor with APL's parents' new puppy all week (I just couldn't resist - she is so cute!!) With me half-conscious in the back seat, we made it to the airport, returned the rental car, went through security, and got on the plane.

Two hours (and two very stiff and sore knees) later, we were descending into Denver. Our plane had to take a big detour around the Fourmile Canyon Fire, which had started only a few hours earlier. We could see the pillar of smoke rising up from the Rockies and sailing out over eastern Colorado into Kansas when it hit the inversion layer - it was pretty intense. However, we didn't get to look out the window that much. Between the smoke and the high winds, we experienced the worst turbulence I have ever witnessed. Several times I gasped aloud because it felt like the plane was going to fall out of the sky. All three of us had to concentrate on keeping our breakfasts in our stomachs. 

By the time the plane landed and we got off and rode the tram to the baggage claim, I thought I was going to collapse. APL and RK insisted on carrying all the luggage, leaving me concentrating on making my feet move. We had to wait for the shuttle to the parking lot for about ten minutes and there was no bench. By the time the shuttle finally arrived, a crowd of people had gathered. They started pushing on to the shuttle the moment the doors opened.  We were able to get on too, but not in time to grab me a seat.

I knew how exhausted I was and I was in a lot of pain. But I just stood there, sort of stupidly, staring at the sign that read "please reserve these seats for the elderly and disabled." The seats were all filled with people. None of them were elderly. None of them looked visibly disabled. They all just looked like tired travelers, happy to get on quick enough to get a seat for the ten minute ride to the parking lot.

I knew I was really close to my crashing point. I knew I should ask for a seat. But I just didn't know how. What was I supposed to say? "Excuse me. I know I'm young and I look perfectly healthy, but can I have your seat?" or "I swear my legs hurt more than yours do?" I couldn't stand the thought of the incredulous looks they would almost certainly give me. And I'm pretty sure if someone had responded that I didn't look disabled, I probably would have broken down on the spot. I knew I should have found my courage and asked for a seat, but I just didn't know how.

So I grabbed the support rail next to APL and steeled myself for the inevitable pain of keeping myself upright in a moving bus. And it came. Halfway to the parking lot, I could not longer grasp my hands around the pole. I draped my arms over APL's shoulders, shifted as much of my weight on to him as I could, and buried my face in his neck, crying slightly while I tried to hold myself upright.

I didn't care where our car was parked. I was in so much pain that I shuffled off the bus as soon as it made it's first stop in the parking lot. There was no bench at the bus stop. I collapsed on to the concrete and started crying in pain, exhaustion, and frustration. APL and RK followed me off the shuttle. RK sat with me while APL went to get the car. I had mostly stopped crying by the time he got back, but he carried me to the front seat just the same. 

I know the last part of that pain and exhaustion could have been avoided if I had only been brave enough to ask for a seat. But I still don't know how.

Guess that's something I'll need to figure out.

(NOTE ABOUT THE FIRE: Monday night we could see the flames from our upstairs window. The Fourmile Canyon Fire is still only 30% contained today and 169 houses have already been lost. The Red Cross is accepting donations to help for those who have lost their homes, and the Boulder Humane Society is providing shelter for pets of those families. Please send good thoughts to the firefighters who are working to safely contain the fire and to all of the people who have lost their homes.)

Wedding Planning Week!

I just spent a really wonderful week in California doing wedding planning! It was very busy, but also lots of fun and super exciting to see the wedding coming together! There were several moments over the last week when it dawned on me: oh my god, we're actually getting married!

First I flew out to Los Angeles to spend some time with my mama,  who helped me shop for my wedding dress. APL's mom came with us to some of the appointments too. (I love her, and she doesn't have any daughters of her own, so I was super glad she got to join us a few times!) 

I think trying on wedding dresses would be exhausting work even without having to deal with achy joints and fatigue. Some of those gowns are really heavy, and you usually have to wiggle into them, because the sample is some ridiculous size that no reasonable person actually wears. And then you end up having to stand around for a long time while someone zips, clips, buttons, or ties you into the dress. Then you have to stand around even longer to decide if you like the dress. Then you have to stand around while they undo all the zips, clips, buttons, and ties so you can wiggle out of the dress. Then you start over with the next dress. By the end of each appointment, my knees were made of fire and I desperately needed to sit down. Or take a nap. Who knew trying on dresses could beat a person up so much?

In some cases, you also have to save energy to deal with a "bridal consultant," who either doesn't understand what you are looking for, and keeps showing you dresses that you would never consider wearing, or is just downright rude or inappropriate. The best/worst bridal consultant moments?
  • I tried on a dress that, for some unknown reason, had buttons over a zipper over a  lace-up corset. As she laced, zipped, and buttoned me into the dress, the bridal consultant would not stop making jokes about how difficult it was going to be for my husband to undress me on our wedding night. In front of my mother. And APL's mother. Awesome.
  • I may have gained some weight from being inactive and on prednisone for the past two years, but I am not a large person. In fact, I am a totally reasonable an healthy size. But I had one bridal consultant say this to me: "If you ever want to find a gown, you're just going to have to use your imagination. No samples will ever fit you." Needless to say I won't be purchasing my gown from this woman.
Good thing I have a sense of humor!! And good thing that, in the end, I found the perfect dress. I am super excited about it and I can hardly wait to see APL's face when he sees me in it. 

The timing of this trip was also lucky because I got to go with APL's mom to pick up their brand new, 9-week-old, Rhodesian Ridgeback puppy. Her name is Saba and she is such a love! (That's who is in the picture in this post.) I'm pretty sure puppies are the greatest therapy known to man. There is simply no way to be the slightest bit unhappy with that ball of wiggling love in your lap.
On Friday, APL's parents and I (with little Saba on my lap) drove up to Groveland, where the wedding will be. APL and RK flew in and met us. Then we had a weekend's worth of wedding errands to run - but we had a ton of fun doing it. We booked houses for the wedding party to stay in. We visited a local organic flower farm and talked to the amazing woman who owned it - not only is she going to do all the flowers for the wedding, but she sent us away with about 10 vases and seeds already! APL had his BBQ tasting (sooooo yummy!!!) and we decided on a menu for dinner (which will be cooked on-site). And we spent all day Sunday tasting the local wine and talking to a small winery that will provide a wine tasting bar for our guests at the wedding.

It was an amazing week and we made so much progress on the wedding. I can't believe that APL and I are getting married in less than 9 months!

Friday, September 3, 2010

What I Learned From 11-Year-Old Caitlin

Remember that time I was 27 years old, went to the dentist, and had five cavities? And I determined it was because I sucked at being an adult and just hadn't been taking good enough care of my teeth? Yeah, about that.....

My cousin just sent me an article and (you guessed it!!) apparently several of the drugs that I am on for my RA (or have been on over the past couple of years) can lead to tooth decay. I haven't researched the issue myself, but the article is posted on The Arthritis Foundation website. Here is an excerpt:
One of the side effects of methotrexate, even at low doses, is dry mouth. Saliva in the mouth has an anti-bacterial effect. Loss of the cleansing properties of saliva can lead to the buildup of bacteria, and thus, to tooth decay

Prednisone also has the potential side effect of xerostomia (dry mouth). Prednisone is also a glucocorticoid, which can increase not only blood surgar levels, but the levels of sugar in existing saliva - which some dentists will attribute to an increased risk of tooth decay. In addition, prednisone can cause a leeching of certain minerals from bone - most notably, calcium - leading to a potential thinning of bone, including in the mouth. Thus, on many fronts, the side effects of prednisone can cause havoc to your oral health.

Here are some other drugs that can contribute to dry mouth: Naproxen, Motrin, Piroxicam, Diflusinal and most antihistimines.   
May I be the first to say: What. The. HELL?? My RA drugs are affecting my teeth??? It makes me want to get pretty mad about it. When will the surprises stop?? Is there any way that this disease is not going to affect my life?? What are you supposed to do when the cure is worse than the disease?? Why do I have to deal with all of this every single day of my life???
Bu then I discovered that the article is from a blog written by the mother of Caitlin,  a young girl who has been suffering from severe JRA since she was three. I just watched a heart-wrenching video about Caitlin getting her hip replacement at age 11. (But I was glad to find the video through a post her mom wrote which says, a year after the hip replacement, Caitlin is doing well and does not need her second hip replaced yet.) 

I have enough trouble adjusting to RA as an adult - I can't even image what it would be like to deal with it as a child. But Caitlin is a strong and inspirational little girl - she talks with poise and composure and acceptance about her condition in the video. She reminds me that I'm supposed to be moving forward, not looking back and grumbling.  I really hope to be able to learn more from Caitlin in the future, so I've added her mom's blog to my favorites (you can access it under "Resources"). In the meantime, I want to thank Caitlin for giving me perspective.  I hope she knows how amazing and strong she is.

Friday, August 27, 2010

Blood Pressure Battle

I have been fighting with my blood pressure for more than a year. Yesterday, the doctor made me bring a month of readings to her and she still determined that my blood pressure was a little too high. She also had me bring in my personal blood pressure machine to make sure it was properly calibrated. For some reason, this required them taking my blood pressure literally fifteen times on at least three different machines and manually. What an exhausting appointment! Conclusion? Still too high, never eat salt, exercise more, take more drugs, and come back in three weeks. ::sigh:: Why is health so exhausting?

Friday, August 20, 2010

Dr. Awesome!!

My rheumatologist and his nurses came through with three Enbrel auto-injectors to help me out! That means I have at least three weeks to get the paperwork and co-pay assistance figured out, which should totally be possible (KNOCK ON WOOD!!) They are the best!!!

Enbrel: Currently Less Help, More Headache

I'm still trying to figure out how to pay for the Enbrel after getting charged $750 last time we went to the pharmacy (an amount we can not afford once, let alone every month). After many hours on the phone, there is good news and there is bad news.

The good news is that school is starting next week. (Wait....I take that back. School starting is not good news! What happened to my summer?!?!) That means that my new year of health insurance has been activated, giving me a new $5,000 cap to cover at least 50% of my prescriptions. So that means that of the $1,600 cost of Enbrel, at least 50% will be covered the next time I pick it up.

The bad news is that, even with my insurance, that still leaves me with a co-pay of about $800 that we can't afford this month any more than we could afford it last month. Not to mention, based on last year, we now know that my $5,000 cap for prescriptions will be reached way before the end of the year, meaning I can look forward to being in this same pickle again next year. But I guess we'll cross that bridge when we come to it.

In the meantime, the other good news is that the people at Enbrel Support have been very helpful (aside from having to re-explain my problem to each person I talked to and having to wait  a while for the right person to call me back). I can't re-activate my Enbrel Support Card until October, because I already reached their $4,000 cap in this six month period. However, they found another program that I might qualify for to assist me with my ridiculously large co-pay in the meantime. They are sending me the application for the program, and they said they would call me next week to follow-up and make sure I didn't need any more help.

But the other bad news is they said it would take 7-10 business days for the application to arrive.  And then I'll need to fill it out, send it, and get approved. And, if approved, the program will help me pay  for future Enbrel but they won't reimburse. Which is problematic, considering that I don't have any more Enbrel and I'm supposed to take a shot tomorrow. If I have to go without Enbrel for a week or two until we get this straightened out, it probably won't be pretty. And the timing totally blows. Did I mention school is starting next week? Crap.

I've called my rheumatologist to see if they can help me get some Enbrel for the next week or two until I get the paperwork for the co-pay assistance straightened out. Even if they can't give me any I'll need to talk to them anyways - I'm sure I'll need a refill on some pain meds if I have to cold turkey off the Enbrel tomorrow. ::sigh::