Tuesday, March 30, 2010

Sticking With Syringes

Last time I picked up my refill of Enbrel, the pharmacy mistakenly gave me syringes instead of auto-injectors. I was not pleased. But, nevertheless, today I decided to request syringes instead of auto-injectors. 

Though using a syringe initially gave me the jibblies (jibblies: it's a technical term), over the past four weeks of I have gotten over my fear of injecting myself with a needle and concluded that the syringes are actually less painful than the auto-injectors. And, because I am the one actually pushing the plunger (hence I am the one in control), the injection with the syringe doesn't feel like such an eternity compared to the auto-injector - even if it actually takes the same amount of time.
So that's the news update for today: I am now using syringes. By choice. (Updates on spring break soon, I promise!)

Wednesday, March 17, 2010

Eight Happys

I realize that I have been a total grump in my last four blog posts. I'm not going to lie: it's been a little bit rough for me lately. 

But, to make up for my extreme grumpiness and try to get back to my spirit of optimism, here are eight things that make me happy today: 

(1) Please perform every anti-jinx superstition you know: I think that I might be feeling a little less exhausted today. Fingers crossed for improvement.

(2) Lots of people are wearing green today for St. Patrick's Day. Thanks to APL, I wear green every day.

(3) My newest form of procrastination makes me extremely happy. The very happiest times of my life have been on the road with APL. 

(4) I get to be on the road with APL again tomorrow! We're leaving for California first thing tomorrow morning. 

(5) I get to spend the next  week in the beautiful place where we'll have our wedding: APL's parent's property in Groveland, California.

(6) I get to spend the upcoming weekend with APL, both of my siblings, my best friend, and the people they love. 

(7) I get to spend the following weekend with APL and both of our parents doing a few  fun preliminary wedding planning things.

(8) On Saturday, we'll be in Yosemite National Park, which may be my favorite place on earth.   

Today, I feel happy. ~;o)

Sunday, March 14, 2010

Fail Blog FAILS!!!!

Can someone please explain to me WHY ON EARTH Failblog, one of my most favorite forms of procrastination ever, is asking me in two separate places: "do you have moderate to severe rheumatoid arthritis?"??? 

For the love of God, can I not escape this RA curse ANYWHERE?!?!?

Also, to add insult to injury, when I clicked on the stupid flashing Orincia banner (because I do, in fact, have moderate to severe rheumatoid arthritis) it didn't even work!!! Talk about FAIL!!!

Apparently, there is no end to my frustration this week!!!! Grrr....

UPDATE: APL informs me that FailBlog's advertisements are generated by Google, and that they are targeted towards what Google knows about me. And seeing as Google owns Blogger (i.e. this blog) Google obviously knows that I have RA and that is why I am getting ads asking me if I have RA. I can't decide if that makes it better or worse...

Thursday, March 11, 2010

Next Stop: West Breaking Up With You!!!

Dear Today,

It's not going to work out between us.


Wednesday, March 10, 2010

Some Dayz Teh Cheezburger Eets Yoo.

Last night I had the interesting realization that I have been feeling extra exhausted almost exactly as long as I have been off prednisone. I left a message with my rhuematologist to see if there was a possibility of those two issues being related. I just got a voicemail reply from him. He said:
Prednisone does tend to give people more energy, especially when it is used to treat an inflammatory disease such as RA. Your energy should improve some over time, if you can be patient. If it's really a problem, you could resume prednisone at 2.5 mg a day.

(a) What do you mean my energy should improve "some"? How much is some? How long should I be patient???

(b) Why on EARTH didn't you mention this potential side effect when we discussed taking me off prednisone? Seems like that possibility might have been relevant to the conversation.

(c) How does starting prednisone again solve ANYTHING??? Doesn't that just delay this exhausted feeling while continuing to make me fat and miserable? How is that sustainable???

[Several loud curse words omitted.] 

Tuesday, March 9, 2010

What Do You Do When 12 Hours of Sleep Is Not Enough??

Yesterday I got home from class and externship meetings at about 3:30pm and announced that I wanted to go straight to bed. Immediately

But APL made the very logical argument that I ought to attempt to stay up a bit longer, closer to my normal bedtime, in the hopes of establishing a more normal sleep schedule and making it easier for me to get up in the morning. This made sense, so I managed to stay awake a few more hours, though needless to say I did so by watching old episodes of Little House on the Prairie rather than attacking the mountain of work I have to do at this point in the semester. And I'm pretty sure I was still in bed by about 8:30pm.

But, despite sleeping literally twelve hours (i.e. half an entire day), I still had an impossible time getting up this morning. I just couldn't get out of bed, like someone had turned the gravity up and it was next to impossible to fight against it. But seeing as my Professor was handing out the take-home midterm in class today, I had no choice but to get up. I did it somehow, though I can't explain how.

When I got home from school and getting a blood test (as usual), even earlier today at 12:30pm, I was ready to go back to bed. Maybe even more so than yesterday. But I've got a take-home midterm to complete. And reading. And research. And emails to respond to for work. Just so many things to do.

I know RA has taken away a lot of my energy, but I feel even more exhausted than usual, if that's even possible. But what on earth do you even do when twelve hours of sleep is not enough???

Friday, March 5, 2010

Syringe Mission Complete!!

Well, I did it. I used a syringe today to inject my ENBREL dose.

Favorite Lab Man told me that he didn't have first-hand experience with ENBREL, so he wanted to make sure I had the best help I could get. He took me to meet one of the nurses at student health, who apparently gives an ENBREL shot to a student every single week because the student is too afraid to do it herself. Favorite Lab Man had talked to the nurse about my situation and everything. And I was SO grateful that I had him to help me get through this. He was super-sweet about setting up the whole thing, even though it's not his job to do so.

The nurse talked with me about how to use the syringe properly. She told me that, if I wanted, she would give me this shot this week and I could come back next week and give myself the shot while she watched. But, with all the advice and support I have gotten from my amazing readers, and the self-reliant feeling I've been developing in the past two weeks, I decided that I was ready to just do it myself. I need to be able to take care of myself. So, with her explaination, I stuck that needle into my thigh myself, pushed down on the plunger myself, and gave myself an injection - my first time using a syringe.

I'm not going to lie: I was pretty shaky for about a half hour afterwards. For reasons that I can't quite explain, it was just hard hard for me to use the syringe. It involved a lots of adrenaline, and I felt really jittery for a long while afterwards. 

But, in the end, it really wasn't all that bad. In fact, in some ways, it was actually better than the auto-injector. With the auto-injector I usually press the button and then hold my breath during the 15 seconds that the spring-loaded needle sends the medicine into my system. Sometimes waiting for the click that signals it is over feels like an eternity. But, with the syringe, since I was pushing the plunger myself, I was in control of how long it took to put the medicine into my system. And it didn't seem as long. So maybe it's a blessing in disguise? In any event, I have three more tries with the syringes to decide how I want to do it after that. So we'll see how it goes.

After it was all over, I found myself thinking about a blog post that I read recently. It was about how kids get treats when they have to undergo medical procedures, but for some reason grownups don't get any credit for dealing with yucky stuff. The post inspired me to give myself a treat after doing something that was hard for me: I bought myself a wedding magazine and a latte and spent a lovely afternoon in a coffee shop, just dreaming about my wedding day! 

All in all, not a bad day!!! Syringe and all.

Thursday, March 4, 2010

Needle Me This

Today I got home from the pharmacy and went to put my next four doses of ENBREL in the fridge when I noticed that the box  they came in was blue. That's odd, I thought. The box is usually white. I looked a bit closer only to discover that the pharmacy had given me syringes instead of auto-injectors!

I called them right away. After all, I had been there only 15 minutes ago. Surely they would offer to fix the problem. But no. They couldn't legally take the medicine back. The pharmacist said there should be a diagram in the box that explained how to give the injection. When I said I wasn't sure I was actually comfortable using the syringe - that the auto-injector is tough enough for me sometimes - she offered to look up some instructions on the internet and talk me through it. No, thank you. I can look things up on the internet myself.

I think if I had continued to make a fuss about being uncomfortable with the syringe, the pharmacy would have eventually helped me figure out how to get the auto-injectors instead. But then the hundreds of dollars of medicine in the syringes - four weeks worth - would have just gone to waste. And when I started thinking about all the horror stories I've heard about RA patients without insurance or who aren't able to afford these expensive medicines, I just couldn't stomach the thought of throwing those expensive meds away just because the method of delivery made me a little uncomfortable.

After all, I deal with needles and things that make me uncomfortable all the time. I've been injecting myself with the auto-injector for months. I seem to get blood drawn every other week and I don't turn my head away anymore. I've had flu shots and Remicade infusions. And these past two weeks I've been all about my ability to take care of myself - so why not learn how to use a syringe on myself? I told the pharmacist I would figure it out.

But as soon as I hung with her, I felt shaky and nervous. I don't know why the syringe makes me feel so uncomfortable. It might be partly because you have to make sure no bubbles are in there, and I don't know how to do that. So there actually are some safety issues to be concerned about. It might also have to do with the yuckyness of actually watching myself push a needle through my own skin. But, strangely, though I'm not sure that this makes any sense, I feel sort of like knowing how to use a syringe confirms that I am a sick person. With the auto-injector all I had to do was push a button and look away, no skill involved. Anyone can do that. But only sick people (or medical people) know how to give themselves injections.

In any event, I think I will be fine. After the first time it will probably be easy. But I  think I need someone to be with me the first time. APL is no use because (a) he isn't here and (b) he passes out at the sight of needles going into skin! And a passed out fiance is not very useful to anyone!

Instead, I called Favorite Lab Man at student health to ask him about it, as I've struck up a comfortable friendship with him while going to get blood drawn every other week for the past year and a half. He is always super sweet to me and once said if I thought of anything he could do to help, just let him know. So here it is! Tomorrow I am going to go in and see him and he promised to give me some pointers on giving myself an injection with a syringe. And I'm so grateful that he agreed to talk me through it, not as part of his job but just because he cares.

But I will still give myself the injection. So wish me luck!

Wednesday, March 3, 2010

On My Own

I'm not going to lie: APL has only been gone for a week and a half, but it has been hard for me to get along without him. 

I've had to find the energy to do everything on my own: get my schoolwork done, get my externship work done, grocery shop, cook all my meals, do laundry, keep the house relatively clean, run errands, walk the dog every day. And if I don't have the energy, I have no choice but to do it anyways or give up on it and rest.

I've also been doing a lot more things with my hands than I usually do: carrying, lifting, loading, unloading, chopping, opening, unscrewing, throwing. Pain and fatigue make my hands weak and clumsy, and I've ended up with cuts and bruises all over my hands just from doing everyday things. And, since it is my immune system we're talking about here, of course some of those cuts are now infected. Awesome.

Speaking of my immune system, my lip has been split for a solid two months now. And, instead of healing, it has decided instead to sprout a cold sore in addition to the cut. But the pharmacy didn't have the generic medicine for this in stock, so I had to pay $50 for four pills of the brand name stuff. But by the time I got it, it was too late to stop the cold sore anyhow. So now my lip will be mangled for at least another month. Excellent.

And, of course, it doesn't help at all that my stopping prednisone coincided with APL being gone. This was a very bad plan on my part. (Note to self: DO NOT REPEAT). In general, my entire body feels like it's been trampled by a herd of elephants on a daily basis. My everything hurts and I literally can't remember the last time I felt so exhausted. The only problem is, I can't figure out what kind of elephants they are! Are they "ENBREL can't stand on it's own two feet without prednisone" elephants? Are they "I'm doing a hundred more things by myself this week than usual" elephants? Are they "it's the middle of the semester and law school sucks so why are you even surprised" elephants? All of the above? Unfortunately, I don't think I will be able to tell until I've waited a bit longer. Which makes me feel tired just to think about.

I've also been lonely without APL.

But here's the thing: while I certainly will not say I have enjoyed APL being gone, I will say that I think it has actually been good for me to have a few weeks on my own.

For one thing, it has really opened my eyes to just how much APL takes care of me every day. I've seen with great clarity all the little things he does to make my life easier, because I've had to do them all myself while he's been away. I always knew that APL helped me get through stress and pain, but I honestly never realized exactly how much he does for me every day. APL can tell when I am running out of energy and helps without my having to ask for it. He cooks dinner or goes to the grocery store while I get my schoolwork done. He drives me to school so I don't have to expend time and energy taking the bus when I don't feel well. He makes me breakfast when I feel too weak and sick to eat. He opens jars and carries heavy things and takes out the trash. I don't have to ask him to do these things, he just does. Well, ok, sometimes I have to remind him about the trash! But I now have a much clearer picture of exactly what I have to be grateful for. And it's a lot.  I am more grateful than I can describe.

But, though I'm not sure this will really make sense considering the last paragraph, I think it has also been good for me to realize that I don't need APL to do these things for me. I may struggle, I may be tired, I may be a bit beat up, but I really can take care of myself, all by myself, if I need to. I have cooked and shopped and taken the trash out myself. I have walked the dog every day even when I didn't feel like I had the energy to do so. And I have also managed to ask for help from other people when I needed it. I have even done something about my social life! (In fact, a friend is due at my place for dinner any minute and I'm having lunch with some of those law school girls on Friday!) It's been a hard week and a half, but guess what? I'm ok.

Though I have to admit that I am still grateful I won't have to do it alone much longer!!