Hair (or lack therof)

It may not be visible to anyone else, but after several weeks of careful observation I am now sure: my hair is falling out again.

And it is everywhere. In the shower. In the drain (oh god was it ever in the drain!) On my pillow. On the sheets. On my son. In my son's diaper (how does that even happen?!?!)

Now: which of my cocktail of medications could be the culprit this time?

Hair

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(

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!!

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.

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!

Conclusions:

(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....)

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.