Here Comes the Flood

Starting off 2012. A list, or two.

2012-01-13T00:38:00.000-08:00

Current favorites:

Cheese samples at whole foods. I just keep looping back around for more.

Flannel sheets - finally got cold around here.

Putting books on hold at the library. Then scrambling to read them all in 2 weeks.

Listening to new bands on spotify. Look out Pandora.

ABCfamily tv shows...there are so bad I can't stop watching.

Balsamic reduction on everything but especially mozzarella cheese.

Joni Mitchell and those that cover her songs.

Being obsessive about my goodreads account.

30 Rock and Portlandia are back.

Summer camp planning season!

And for some balance, current non-favorites: (But, they don't deserve the time to look up photos!)
Getting new tires.
Physicians Assistants that don't know what they are talking about.
Basil being out of season.
Volunteers who live to make me crazy.
New noisy upstairs neighbors.
Working on 3 day weekends.
The shenanigans of the cookie sale.
Not being able to sleep normal hours.

Opening Up

2011-09-14T01:37:00.000-07:00

I have found that is easy to forget the challenges of RA now. No, I am not in remission. Some days are still filled with flares, but generally things are under control. It's pretty great. Awesome really. Life is consumed by other non-physical challenges. As it should be of course.

So, it was an interesting morning as I decided what to tell at a small group retreat for work. We were doing a team building exercise where we each made a timeline for our life, marking the significant events. Significant. Excepting perhaps being born, my 27 years did not have anything that matched the day where I first heard rheumatoid arthritis. BUT, these were my co-workers and my supervisor. Being open about the big ol' bad RA was tough enough with friends let alone people I work with.

As it happened I shared last and after my co-workers very openly and with transparency shared their life moments, I knew that I was going to open that part of me that stays tightly closed. It isn't as though I never mention my RA, but I certainly don't talk about the real challenges. For an example, we went for a massage, and I mentioned my RA because I was worried about them hurting my joints. It comes up sometimes in conversation, especially since I don't want to seem like a druggie since I know so much about pain killers.

But, this time I did share. I talked about that first day, and calling my mom on the payphone from camp after being at the clinic. I told them pieces of how the side effects bowled me over, and the years of searching for something to stop the pain besides steroids and Oxycontin. I did make a big emphasis on when I started the rituxan infusions and how that changed everything. I was clear about the RA not preventing me from doing what I want anymore, because I didn't want them thinking they had to be careful around me now.

I was talking fast, nearly shaking and stopping tears. Real progress there. I can count on one hand how many times I have been that open and not cried. So, I got it out. Went on to talk about a few other pivotal life moments, and stopped. I was honest and real, now what was going to happen?

So far, just a few one on one conversations with them. It seems that many people have health issues as well. My staunch rule of keep your health hidden was broken, and so far it hasn't imploded on me. And, I don't think it will. I work with some amazing people, and it feels right that they know how I came to be me.

2011 Summer Never Was a Friend of Mine

2011-07-01T23:29:00.000-07:00

Summertime and lemonade. Or limeade because I am in Oklahoma now.

2011 is just a tough year. Yay! I got a job. Wait...why did no one want this job or not last longer than 6 months before... right. I am sure I will love this job NEXT summer, but right now I am making faces at this sour lemonade that I have been making with these crazy lemons that I have been given.

I moved to the OKC in April and in two months have managed to feel completely foreign, and overwhelmed. I would like to state, health-wise life is good, but this job is much harder than I bargained for.

This is what I find funny: Nearly everyone tells me that Oklahomans are the friendliest people, charming, helpful, etc... Sure, people have been nice that I work with, but the quantity of rudeness from the parents, volunteers, my staff, and even the girls that I have seen seems to contradict the friendly vibe. Maybe, compared to other parts of the country, but parents back home are much more laid back. And the demands! People can be so demanding here.

Quit being ridiculous should be stamped to my forehead. At least a hat with a reader board that says I am a real person.

I work all the time. Even when I awake I am aware that I was dreaming about work stuff. This is the busy season, so in August it will be different. I think about what I will want to do with all my "time" then. Zumba? Cook more? Meet people?

I think people assume that I will decide that this job isn't for me. But, even at my most frustrated state, I am aware that this is not a permanent problem but just a symptom of a poorly planned program. The dereliction of planning is evident, and with me onboard things are going to change. A revolution of changes really. That part makes me excited. Having worked now for 7 different camps, I have so many ideas that will make a huge difference.

The bottom line: the campers are having a blast. A few upset parents but they were lost to us before they even came to camp. Their metaphorical bank account was so badly withdrawn there was no way to please them. Other girls: seriously loved being at camp, and learned a lot.

Things that won't change: the heat. Manalive this heat. I am sure no one is supposed to live outdoors here. With 110 degrees temps, scorpions, venomous snakes, black widows, tornados, and general scary other bugs.

I like managing these camps in theory. The "in theory" being when I will be able to execute a doable program and not some insane plan that others put together. So, I add to my 2012 notebook everyday and think about someday.

And I slowly accept being part of Oklahoma. I gave in and have used those styrofoam cups that they give out with every drink. I ate a hamburger...still not thrilled about beef. I drive all the time, approx: 300+ miles a week going from camp to camp. I have been known to not necessarily skip the country station while driving. I have said Y'all. I drink gallons of water everyday. And, I no longer question why everything is fried. (fried pies, y'all, they fry the pies)

Things that keep me foriegn: any word with the -ag sound, i.e. bag, tag, flag, etc... I remember that from Virginia, but my staff just die whenever I say it. And my rational of asking them to pronounce bagel and asking them why can't it sound the same way doesn't work. My non acclimation to the heat. Looking for things forever at wal-mart, and finding tucked away, such as feta cheese, or fresh basil. I miss thriftway. Never thinking about how the wind will always make my hair look crazy, until it's too late.

My adventure in this great wide middle of the states is tough. So tough. But, we're more than halfway through with the camps. Only 2 more weeks of resident camp then another week of travel camp, and only 3 more weeks of the day camp. Maybe I will come out of this culture shock and find it to be the best place ever for me. Maybe. Until then I am just trying to understand and not eat too many fried things. Or take things too personally. Or shrivel up from sun exposure.

Babel and Early Morning

2011-01-14T05:07:00.000-08:00

So much weather. In the middle of night (awake from pain) I can see the rain pouring onto the skylights, and I know it's going to be a tough day. Of course, it isn't the biggest deal, because my schedule is rather flexible for the time being. It isn't as if I can't take naps, or rest my joints. So, don't worry about that.

I think the weather is an example of a factor in my life that drains my energy but one I can't control. The others, like anger, I wish I had a better handle on. I am not outwardly angry, but just a simmering inside. I feel such hurt and betrayal, and it doesn't seem to relent. And it is exhausting.

-I know, ugh, be positive-

I am in such transition. I live out of boxes and planning beyond a week isn't possible. I have been reading this book, Possessed by Elif Batuman. She writes about Babel (Russian early 20th century writer) and how everything he did was not for the act of doing, but to gain information, or ideas for his writing. I feel like that. Not to gain for writing, but for something. Makes me question how will I move out of this transition.

My joints are also without hard work or stress from work still acting up. Usually a flare is short, thankfully. I just remember this medicine doing so much better before. I am gratefully only on as needed pain killers now instead of always every day. But, it would be nice to not have to wake up and realize that it is a night where I should have taken them.

Early morning musings are not very uplifting, I guess. I am still here, just buried.

Non-RA Sleepless Night

2010-12-08T03:55:00.000-08:00

So often, my life is complicated by this high maintenance disease. It doesn’t take much for me to find all sorts of miscellaneous stressors unrelated to RA to mask the RA pain/trials. But, this week, it is the opposite. I am awake at night and it has nothing to do with pain – at least the physical kind. I have been on a job search since July, knowing that my job was going to end in the fall. I am very frustrated with every one of my searches. I often find out after weeks, or months that they decided to not hire the position due to budgets, or to change the position entirely, in which I am no longer qualified. Then of course there are the ones, that just told me no. It is poetic that nearly to the day two years ago, that they offered me a job at Sealth, and now I am moving out. It makes me reconsider this whole career choice.

Or, maybe I just need a week to readjust my attitude.

I have worked very hard to be who I am despite the adversity. I just would like to keep that momentum; I do not want to have to start all over. I wonder if change brings on this much anxiety to others with RA.

I just wish I could turn off my head. I keep going over and over every bit of the processes, evaluating why they would change their mind. And why it takes them so long to give me answers.

I know, I know … from my very supportive family/friends “something perfect will come, in time.” I am sure that this mess will then come to be fairly insignificant, but for now as I am in this tense mess, and it keeps me up at night.

Packing to Christmas music helps some. I will be glad when everything is packed so I can tie up all loose ends here soon. It’s good motivation, because I hate packing, I have a hard time deciding if I should keep things or not.

And of course an update: I have had an interesting month due to some extreme winter storms, my joints were very upset and flared, but feeling “normal” lately. I am sure the infusions are working. It is time for me to have another appt soon, and blood work of course.

Even Me

2010-10-15T19:16:00.000-07:00

Happy Halloween...scary picture right? This is 6 months of untreated RA in the hands. (In case this isn't obvious, it is not a picture of my own hands)

Current thoughts:

-I read an article about new research for RA (article) where they can stop or at least lessen the disease for patients who discover their disease in the first 3 months. I know from others that it takes a long time to be diagnosed, but I was diagnosed after 2ish months, so I am sure it will help some of the newly RA patients. It is an exciting development, just not very relevant to me now of course. They are touting it as a “cure”. That is saying a lot in the arthritis community, a cure, wow. I was told a few times that I was lucky to be living now, because I would probably live to see a cure in my lifetime. I definitely agree, I cannot imagine how I would deal with my RA if I had it even 10-20 years ago. So many things have changed new drugs and therapies as well as more education. I hope the research keeps reaching, because as much as I am managing my life with RA I would love to focus on the other challenges in my life instead ;)

-I had a stressful moment yesterday. The insurance company sent a bill for my infusion last week, denying any coverage. The bill totaled $32,000. Whoa. After phone calls and worried shock, discovered they thought I wasn’t covered, but really they were just being crazy. They are still working on how much I owe on the one a month ago, in which I am covered for, so…it really made no sense. So, long story short, all is good on the insurance front; they just caused me major stress for their mistakes. Ick. Who thought up insurance anyway? It’s a weird concept. I don’t like money at all.

-Money. So, for now I am working odd jobs at the camp, to keep up with bills. Job hunting has not gone well. I am not as stellar as I first thought, and really I don’t want the jobs that have been interested in me. I had a great job here, and it’s hard to say yes to something that is not for me at all, when I could do what I love here. Despite the non-full-time status. It is a conundrum.

-That basically means that I have no idea for my immediate future. I don’t know I could be moving as soon as a month, or putting up lights and decorating for Christmas here. It is sort of a hard spot to be.

-And how am I this week? It has been a tough week. I ended up working the meals in the kitchen instead of teaching which is preferable, because I get more breaks, and less trekking up the mountainous hills. It just was a lot for me at this time. There is no use, saying that I am tired, or too spent, just had to keep going, and then go home to sleep until the next meal. The rain didn’t help either. It will be better this weekend, the group that’s in is smaller and I don’t have to work the mornings. It will be nice to sleep in.

-The World Arthritis Day got me thinking about sharing my story more, because despite having a blog that I barely blogged, I don’t talk about my arthritis much. I don’t have anyone to share with explicitly, I’m not in a serious relationship and even though I live in a close community they are also co-workers. So, I mostly pretend to the world that I never struggle physically, despite the daily struggles. However, there is so much advocacy for getting the word out, educating the general public of the other arthritis forms besides the famous OA. I feel guilty, not ever willing to put myself out there. So I am taking small steps like posting on facebook the link to this blog, and sharing a little bit more concrete info to those that ask, rather than just saying “I am just tired today.” We can all help get the word out, even me.

Week of Days

2010-10-13T02:40:00.000-07:00

So, I missed it. Yesterday was World Arthritis Day. The request was to wear blue to show support, and honestly, most of what I wore yesterday was blue, just unwittingly. (Please go to the website and learn more about all the KINDS of arthritis, www.IAAMovement.org and read their newsletter: International Auto-Immune Arthritis Movement Newsletter.) However, for me the World day is eclipsed by my own anniversary coming up, on October 16th. That is the anniversary of my first appointment with a rhuematologist, the official date of my diagnosis. I was 19 and barely understanding who I was. I am still working out much of that still, but it is unbelievable how things have changed. I had never heard of rheumatoid arthritis until that summer, never knew that such a thing existed. I had never had my blood drawn, or been to a specialist. I had never had prescriptions beyond taking antibiotics or penicillin for a few weeks. I never had to calculate which things were priorities for the day, and what could be postponed for days with more energy. I had no idea what the diagnosis meant, or what it meant for future me. I read everything I could, first person accounts, informational books, etc... Then, it became evident, that trying a medicine for a few months, turned into a cycle of trying new meds, because nothing made a difference, except the horrid prednisone that masked the disease, and painkillers that glossed over the pain. I did not have to wait years wondering, because I had a diagnosis a few months after symptoms appeared, but I waited years for my body to react to a medicine. Not with much patience either. My faith in God wavering, then growing stronger, and I became fairly intolerable to be around. I was so frustrated - the unfairness and the pain was all consuming. A few things helped: the amazing people who supported me despite my moods and selfishness, dancing gave me a release, and working with kids in the summers. Looking back, I don't know what I would be able to tell that 19 year old mess. Grief is a process, and I still greive, but things have changed. I am very grateful for that change. So I hope that this next year brings even more positive change. So, I can look back and be amazed at the growth. I don't like when people say "I have no regrets, I wouldn't change a thing." Because, of course I would change a ton, if given the chance, and that shows that I have grown, but remembering is alright. Helps with perspective. It helps when I get weepy about tough days, or nights where sleep evades. This is a week of "days", the world's and my own.

Also, the picture above is so perfect. I just searched for world arthitis images, and there it was. I focus much more on my hands/wrists because they are so obvious with their swelling, and redness. The light makes me think about the break from the pain. In the moments where pain consumes me, I try to hold onto the pain, wrap the pain around and diminish it by sheer will, and that light in the picture is what it is like when I have the pain in such a grasp that it is no longer pain. It is an escape, and there is relief like no other. I love that photo!

After a rituxan infusion a list of must haves.

2010-10-08T03:23:00.000-07:00

Taking another week off from "life" to recuperate from the meds. I had the second dose of rituxan a few days ago. It was not so pleasant, but I kept quiet so they wouldn't change the rate of the drip. Really, the best thing is to get it over and done with. Previously, I slept constantly, woke up to major aching, head aches, general nausea...etc. This time, I can't sleep. Nothing is more annoying, then knowing that the best fix for my healing and health is sleep and have it so far out of reach. So, being awake at 2:30am and bored, I thought that I would share my list of favorites and must haves.
(I don't really want to put an emphasis on importance with a number ordering, so here without any order:)

-Mint Tea. Specifically Bigelow Mint Medley this week, but really any mint tea is my favorite. It is my fixer. It also was a big help last night, when I was dealing with major nausea.

-Soul-stirring music. It changes me, and moves me to joy. It gets me out of my headspace of being "sick". Brendan James is an artist that I have listened for awhile, but just downloaded a new album and it is wonderful.

-Kitties. Even when they are being trouble-cat, they are a comfort.

-Making Soup. Cooking helps me feel less of an invalid, and soup making isn't very physical (no insane mixing), and I love all soups!
cabled headband pattern that is SO not crochet
-Crochet projects, or this week, trying knitting and finding it to be difficult.
http://www.netflix.com
-Websites that I can watch non-stop tv and movies, because days of resting is also days of boring.

-Sleep. Even though it has been hard to fall asleep, when I do, nothing better. Of course, a memory foam pillow is a must.

-Dark chocolate. Of course.

-Reading. Although, at times it is hard to read due to the head aches, I always bring home several to read during this time. This author, is excellent, I have read two of his novels recently.
AND
-Plans. Despite the uncertainty of how I'll be feeling, making plans gives me something to look forward to.

Old Hat

2010-09-21T23:32:00.000-07:00

That's how it was. Just Ol' Hat. My seventh time of receiving rituxan...and that's not counting the other times where I sat through remicade infusions. I gave the automatic answers, nods and smiles to the inquiries about being young. All to familiar. It will be seven years in less than a month since I was officially diagnosed. Seven. That is approximately 37% of my life.

I feel alright. I was rightly nauseous last night, without much relief until I finally exhausted myself into a stupor. Then felt dizzy all day, and of course sported red cheeks these last 24 hours. I haven't done anything strenuous or busy so I am not sure about my energy levels, but I imagine they are the same as the other times I had the infusions.

The nurses were nice, I really enjoy the oncology unit that I have been going to. However, they did make my thumb go numb searching for a vein for the iv. "No, I don't have a port..." I fell asleep soon after the benadryl, and thankfully slept through the rough start that usually makes me jumpy.

So this whole business is no big deal anymore. But it is. Or is it? I had chemo drugs drip into me for 6+ hours and it is just a normal day? It feels like it should be more shocking. I am still filled with anxiety prior to the appt, and I still just sobbed for no apparent reason today when I was petting the kitty. No big deal.

Of course, it is a blessing. This medicine works and after trying everything, and some things twice that is a relief. I know that. I just wonder how this became a normal day for me.

My nurse was real keen to ask me how I even had a job, lived a life... found me to be "such good spirits and optimistic". What else is there to be? This is how I am, and I can only live to this fullness, but it is still my life to live. She also asked rather bluntly if I ever get depressed. My mother was there and in my shocked silence, said "YES, she definitely did." Thanks mom. Calling me out like that. She was quick to explain that in my early diagnosis that I was always depressed. But, I am so better now. Right. Glad I got over that phase of being upset about a chronic disease...ugh.

In honor of being a invalid this week, I made the best ever chicken soup from scratch. I love making soups of course, and this one almost makes being stuck at home and nauseous worthwhile. I sort of want some now.

Apologies for this whiny post. Seriously, spending a couple days of sitting around "resting" makes me a little morose. It helps that there was so much fall TV to watch. I will also go back to camp tomorrow, probably won't start working for a bit, but starting to get back into the thick of it. My "problems" will take perspective when I have more to do.

Also, helping me distract from depressing thoughts, continuing to finish my blanket that I have been crocheting awhile. The picture is not my blanket but an other's finished product. I used green instead of orange, because I know orange would really grate on me after awhile. I have all 12 squares done except their final borders.

Advice to all others for tricks to wile away boredom and scary thoughts after an infusion, make scrumptious soups, crochet monumental projects, watch hours of TV, and best of all sleep for 16 hours a day! Doesn't it sound glamorous? Ok, not so much, but for me it's Old hat.

Intentions

2010-09-04T22:55:00.000-07:00

The summer has come and gone. Being an assistant director for a summer camp, it feels rather empty once fall sets in. Less pressure FOR sure, but empty. It doesn't help that I know that I am moving on. Probably. I am looking for jobs, there just isn't anywhere for me to go with my current job, it will always be a tough-not-really-full-time job without health benefits. And without health benefits, I am lost. I am currently on a Cobra plan but that will be up next March, so job hunting is the focus.

On the arthritis front, things are looking great. I just saw my doctor after not seeing her or doing labs for a summer (a little busy) and we are set up for the next set of infusions. My labs came back all normal, which surprise, taking iron has worked and am no longer crazy anemic.

I am feeling as if I am all about intentions. I intended to get this done, or to do this, revamp that, and at the end of 2 years at this job. I am not where I intended. Or personally, or with my health. Despite the rituxin working, it is not doing the job it did before. I am still taking pain killers, and still finding my joints angry with me. I can function and get up in the morning, but it is not an invisible illness like I wish it was. I pretend it is, say it is, but it still just sighs and aches during the night, or climbing trails, or writing long evaluations, you know the whole mess of living life. It IS better though. And that's what counts. Intentions are just high, and I always knew that.

If only the world of ideals in my head was where I actually lived.

Mulligatawny and an Update

2010-05-12T12:55:00.000-07:00

I called the rheumy today. Follow up appt and probably time to work out how I could do the infusions during my "busy" season. The summer is fast approaching, and this time around, I know what I am getting into. Last year, I was nervous and confused, but now I feel anxious because despite all best efforts, I will be calling parents, listening to staff that feel misunderstood, and the constant battle of pushing for my opinions. Sure-I love doing what I do, but there's also all of that junk. So, how can I be drugged up, fatigued, and hurting from infusions and still stand up and carry on with all the responsibilty? I don't know.

This is also a time of finding balance of information to explain the situation to everyone here. Hey, just going to get chemo today, yeah I'll be back to work in the kitchen tonight...

Maybe not.

Today three of us are going to help set up for a breakfast tomorrow. The perk is that we get a free room at the hotel since we are from the island, and do not wish to get the 5am ferry. I went last year, and it's nice. I just wish I felt better today. I had a hard time sleeping last night because of the pain, and this morning was no better. Eh...and all the pain killers + ibuprofen doesn't seem to elleviate the torrent much. So might be an interesting night. We are going to sing a 2 minute camp song, and help corral teen volunteers--you know vital jobs for the prestigoius give us money breakfast. The breakfast is super yummmy, last year there was salmon.

Despite today, the ritixun is working-ish. I am still taking pain meds everyday, and generally wake up a few hours into sleep to need the extra ibuprofen. Last time with the infusion, I was able to entirely stop all pain meds. Just continue with arthritis pills that supplemented the ritixin. I did change to only 1 kind of pain killer rather than two, but on days like today, I am tempted to bring it back into my daily intake.

I have been much more active with mostly positive results. I took a 3 day backpack, where I had to sleep on the ground, and I am not sure I slept much the first night, at least I got sleep the next. I just went slow, and tried to avoid trails that made us go downhill. That was easier than it sounds since we were hiking along the coast.

I have also gone to Zumba a few times at the gym, and despite not jumping, I love it. I mean REALLY love it. I miss going to dance classes, and this is a good fix. I went to a step class earlier this week, and just barely had the step, most people add 3-4 risers to theirs, mine didn't have the initial one. I did fine, just focused on not jumping. Weird to think that I could be in a step class with arthrits.

So, the biologics are working, just not as strongly as I wish they would. Good enough.

I want to be healthier with things I can control. I cannot control the joints and meds side effects. But working out, eating healthy, sleeping, etc... that is on me. So, been trying many soups that are healthy and yummy. I got a wonderful soup cookbook for Christmas. Every soup, except for the onion/apple one was spectactular. Last night I made Mulligatawny. Apparently it is famous from the Seinfield episode. It is a vegetarian soup made with lentils, chickpeas, basmati rice, tomatoes, onions, lots of curry spices, honey, and coconut milk. Then I attempted to make Haupia(hawaiian coconut pudding) with the leftover coconut milk, but it didn't really set, so froze it and had haupia-sorbet instead. Funny.

For anyone looking for new music- my current playlist is set to Josh Ritter's new album: So Runs the World Away, Greg Laswell's: Take a Bow, and the soundtracks from Whip It, and La vie en Rose.

Infusions, Perspectives, Work, Secrets, and a Good Cry

2010-01-06T01:19:00.000-08:00

I should write more often, then I won't feel so overwhelmed when I do actually write. Much has happened on the RA front this last month. Much.
I had my two infusions of Rituxin, and now starts the waiting. I have done this before, and it takes awhile to take effect. And honestly, still far from perfect, but it gets me off of prednisone and pain killers. Strange, how different this round of infusions actually were compared to the others.
In the past, I start to have a panic attack after the hook up the rituxin. I feel like I need to jump out of my skin, I usually have to stop myself from yanking out the iv and looking for a place to run outside. It is terrible. The nurses normally help by giving me stuff that makes me fall asleep. So, in addition to the benadryl/prednisone cocktail they give you when you show up, I am drugged up and sleep off the rest of the 5ish hours.
But, perhaps I am healthier, or my body is conditioned to the chemo and despite major discomfort, naseaua, head ache I didn't panic. I also didn't sleep until I got home. And then did I sleep and sleep. I went to a new place, because of my new rheumy and they were wonderful. I cannot believe how great they were. I had my own room (what? who knew?) they offered me menus when I showed up making sure I ate (good thinking-nervous me means I don't want to eat), then they accomadated my mom to hang out with me. I have never had anyone there with me before, in the whole 6 years of various infusion meds. And one of the most considerate things, is that the main nurse sat with me and filled out the medical questionaire for me. Because no way could I focus on that feeling that naseaus, but also a big pet peeve of mine is asking arthritis patients to fill out pages of info each appt. Come on, our hands are swollen with inflammation! The first infusion took a long time, and took a long time to recover.
I know that in the past, I was tired for awhile afterwards, but I had a hard time staying awake past dinner for over a week. It made Christmas time interesting.
Side tangent about Christmas:
I hate feeling like an invalid. Of course my whole family knows about my RA, but that doesn't mean they understand it. My family likes to go to Mass Christmas Eve, and this year the family decided to go to midnight mass. I protested, staying up until 10pm was pushing it for me at the time. But to no avail, I found myself falling asleep in church and struggling to keep up with the stand up, sit down, pretend to kneel sit. Then stumbling to bed at 1:30am. So, that meant at about noon on Christmas I was done and just needed to sleep. But, we were off to my grandparents. I stayed awake long enough to eat our early dinner, then snuck out to lay down in the guest room. So, then everyone thought I was in huge pain, or that the ra/new meds were making me worse. I tried to explain it was just fatigue, and yes due to meds, and pain killers, but mostly due to staying up too late! Again, another holiday where I am an invalid.
End tangent.
My second infusion, (Ritixun is 2 infusions 2 weeks apart every 6-9 months) went even better than the last, because I did sleep half the time, so I didn't feel as sick during it. I did however immediately after return to the island that afternoon. We had a rental group for new years, and before I knew I was doing these infusions I said I would work. It was probably a little irrational to work the next day or the next, but I took breaks and was careful. I felt good the first day, but less good as the weekend went on. I survived and then had a day of rest which helped. After my first infusion I felt like a truck had repeatedly run me over, but this second one went better. I don't even feel as tired.
I cannot remember from 2006 and 2007 when I had these infusion cycles how I was immediately after, but I think it's going better. One of the nurses asked if I noticed a difference from it at my 2nd infusion. I looked at her in confusion, because my experience was that it might be march until I see any sign of help. I am not sure they have too many patients that receive rituxin. They did tell me that I was their youngest...sad, I don't even consider myself young for this disease anymore, 6 years does that. Being 19 is young, but at 25 I carry a whole lot of RA experience.
One last rave about this oncology dept that was so great, they only stuck me once for the iv, and the first infusion barely left a bruise! I use to send the nurses running when I showed up in spokane for remicade, I am such a hard stick.
Onto perspectives...
I read an article about the last 25 years of rheumatology and the progress that has been made. It was a very hopeful article, that made me rethink some angry feelings I still harbor. I have never forgiven my very first rhuemy for prescribing methotrexate for so long and making my life hell that first year of diagnosis. I was appalled when I went to a different rheumy that the stats of success for methotrexate were 1 in 3, were the biologics were more 70% of patients found help, especially those with aggressive cases. I had such a hard time with the side effects that year, besides the joint damage that continued. However, reading the article, the costs of methotrexate is sooo much less than the other meds, that no wonder he probably "tries" that before getting into the "big guns". Perspective. I know about money, anyone with this disease has to, and I am single, working for a company that cannot afford to offer me health insurance so I am on cobra with my parents still. I know money.
Speaking of work. It has been a year. I officially started up again this week for our new season. Since I stayed on after summer it doesn't seem weird to be at it again, but nice to be fully focused on summer stuff.
Having to go through infusions meant that I had to explain more than I usually do to the people here. It has gotten very blurry now. I work with them, but we are such good friends too. I never know how much to disclose. I hate feeling like I live a secret life. But, how do you talk about getting an infusion? Secrets.
I have gotten better at handling my emotions when talking about my disease, I use to nearly cry everytime. It felt like such a vulnerable exposure of my life. But, I do miss those good cries that afterwards I feel lighter. Today, I just felt on the verge. There was no apparent reason. Probably a build up of the last few weeks and the strain of being composed. So, we'll see what the rest of the week brings.
All in all, I am grateful for the opportunities in my life. Being able to have the ritixun, a good job, family/friends supporting me, and time for rest. Here's to being on the upswing of hope.

Freezer Screams

2009-12-09T01:18:00.000-08:00

It is time for a vent session. One camp I worked at had a tradition of going into the giant walk-in freezer to scream. We called them freezer screams, no one could hear you, and it was a great outlet for the frustration. Of course it always helped to then have an otter pop on the way back to work. I am in need of freezer scream now. (Artwork is Edward Munch's famous The Scream)

I just received a call last week, after trying all week to get a hold of someone about my status to start the infusions, that they never actually sent a request to get my rituxin okayed from my insurance company. EVEN though, I saw the nurse fill out the form a month and half ago, and she asked me questions! What can be happening at that office?! Everytime I call, I get switched around to so many different people, and put on hold. I really think that this rhuematologist is great, and will finally be a right fit, but I am having the hardest time with everything else. Why can't they make it easy? I am in pain, I am holding myself together, and last thing I need is to fill out 5 pages of redundant information! So I was waiting in anticipation all that time!

I know that I need the Rituxin, I have been through the hoops of other drugs, and other "remedies." I have been taking prednisone and other drugs to get by these past couple months, just waiting to hear back about when I could get my infusions. I HATE prednisone, and these latest painkillers make me so drowsy, that I become a worthless human to be around. I have had to be vulnerable, ask for help, all the while reminding myself that I would soon hear back about the insurance and when I could start. (Insert Scream)

Lately, my right ring and middle fingers will occasionally stop working. This scares me a great deal. I was going to write a blog earlier about this mess earlier, but was unable, unless I only typed with 8 fingers... Despite that, I have been patient and waiting! I know I can't control the flare ups or the naseau and other conditions of dealing with this disease, but the things that are within human control? That should be done with efficiency and hopefully perfection.

I am also frustrated because I know better than to be naively patient. I have been through quite an obstacle course in my path to here. I spent years wrangling with doctors to get to a point where I didn't need to take painkillers/steriods daily. I want to be back in that health. After I finished school, I was no longer covered by my parent's insurance, and despite the logic that pointed to being in school longer to get insurance again. I left and got a job. Unfortunately in that time, I had to wait for 6 months to receive health benefits, and my window of time to take the rituxin passed. So, stupidly I didn't find a way to work out insurance for awhile, and then I moved and had to find a new rheumy. I could have stayed with my previous one, but I wanted a change. I feel positive about the change, just not about how lapse the paperwork side of it. So, this is how I came to be so off schedule and desperate for the rituxin as soon as possible. Entirely my fault, I just wanted this to happen quickly, especially before my job starts roaring back up after the new year. (SCREAM)

(Breath)

The silver lining: I got a voicemail today asking me to set up a time for the infusion. I am impressed with that turn around. This is how I am able to vent now. I was so upset last week that I could hardly talk about it without breaking down.

I spend so much of my energy holding myself together, because I know of the hope out there, I know how my health can be. Don't let me decieve you, I have never been free entirely of pain(since my RA started), but it is a tolerable pain and a pain that I can start to pass off as almost human.

Also, the infusions are pro-active. Instead of just covering up pain, and mindlessly taking pills everyday, I know after a month or so the medicine will start to aggressively fight back to regain control of my joints.

So after screams, venting of frustrations I am finally getting what I want and with the fingers that still cross, crossed, I will have the infusions before the new year.

New Trick

2009-12-09T00:21:00.000-08:00

So, I learned a new trick. I have a terrible time opening jars because of my RA, and thankfully there are tools out there to help with prying soup can lids, gripping, etc... but I still have moments where I just try and try to get a lid off a jar with no hope. BUT, now I know to try jimmying a knife back and forth under the lip to release the seal, my friend gave me that hint. I was so surprised when it worked! Every little bit helps with independence right?

The Future

2009-11-11T00:41:00.000-08:00

I spent last week with my grandparents as my grandpa had total knee replacement surgery. It was a good for me to be there. I was able to keep my my grandma company during those long days at the hospital and to speak up when she had questions for the nurses/doctors. I was grateful to have time with my grandparents but it was a hard week. I felt like I was seeing my future. How long will my knees have before they would need to be replaced? My right knee especially is perpetually swollen with inflammation and feverish to touch.

I know, so many people have had surgery due to their RA and I have been lucky that despite the aggressiveness of my disease I am still walking with my joints. I have to be realistic though. There is a terrifying picture of xrays of RA patients that Enbrel did that I saw at my last visit to my doctor. It showed a hand after one year, then five years, and finally ten years with RA. Obviously, I can feel how my body is beating itself up but looking down the road is not a happy thought. My diagnosis was just over 6 years ago and already 6 years has done enough damage.

I awoke last night convinced that I just had surgery and I shouldn't move. In my pain medicine/drowsiness it took quite awhile for me to realise that I of course didn't have surgery. I hate that. I hate when I cannot figure out what is real and not real when I am that drowsy.

The good news is that my grandpa did wonderfully and is home and his new knee is working out spectacularly.

So, now I am back on the island. I am not working, but I help out every once in awhile since I am around. It is nice to have time off. I get to sleep in without feeling like I have to play the health card. And, I have time to catch up with all that I've missed over the summer. We get so busy with camp that it is near impossible to follow what goes on outside of our world.
I wonder what everyone chooses to tell their friends about RA. I have talked more about it lately with all the new doctor visits and meds. I just never know how much to share. I want to help them to understand, but not scare them as well. But, if you play it off as nothing then they cannot understand your rough days.

Speaking of rough days, it seems that the relentless rain is still causing pain. It has been better than a few weeks ago, but not great. I am still waiting on hearing back that my rituxin infusions are okayed by the insurance company. I am not happy to be taking prednisone everyday in the meanwhile but at least I am not limping right? Side effects or limping?

So, in all my joints are continuing to flare but not all at once, thankfully. Also, I will hopefully have my infusions before the new year and I have lots of time off to take care of myself until then.

Autumn!

2009-10-22T17:53:00.000-07:00

What I Did for Love

2009-10-19T22:16:00.000-07:00

I love dancing and watching dance. I started dance when I was four years old, but when I was in high school I became more involved with other activities. Ironically, it wasn't until after my diagnosis when I was 19, that dance became a part of who I am. I found that despite pain, or limitations that I felt the most honest and free from my disease when I was dancing. It confused many people. Why did I dance when earlier that day I had a hard time getting out of bed? Why did I push myself physically when I should use all my energy for "productive" things? I was never able to fully explain except to dance and maybe then they could see it in me.

As time passed, I obviously, lost certain parts of my mobility. I just kept dancing and channeling that grief that I had to give up other aspects of my usual day to day activities. I think everyone needs that, a way to express, and I used dance.

So, I was thinking about how dance has impacted my life while I was watching a documentary on the audition process for the revival of Chorus Line the other night. It's called Every Little Step. I took a musical theater dance class in college for my minor in dance and we studied Chorus Line, it is one of my favorites. If you have seen the musical you know there is a song called, What I Did for Love. In the movie version they use that song to illustrate a past romantic relationship. However, the real intent of the song and the way it is in the musical is a response to one of the dancers getting hurt, and the director asking "if today were the day you had to stop dancing, how would you feel?" One of the dancers responds that she has no regrets with the song, despite injuries or length of career that she loved it and it was worth it.

Like I mentioned earlier, I really embraced dance after my diagnosis. I was told of my aggressive disease and the possible crippling future in those first few months. My first rheumatologist never sugar coated anything. He told me that I couldn't possibly understand what chronic means, and maybe not even in 20 years would I be able to grasp that concept. I was told by everyone, most who meant well but had no idea what they were talking about, that I had to stop doing this or that, dance being one of them. It has been 6 years of making choices - not always the best ones, but choices for babying or pushing through my disease.

So, I am trying to live like the song. The dancers know that each show could be their last if they injure themselves while performing but that doesn't keep them from dancing. Or sharing their performance with others. There has been times that I had to make my life work around having health insurance with school stuff and terrible jobs. I also gave up things, only later to discover I could make it work for me by adapting. It is different now, because I am finding ways to live despite my should-be limitations. For an example, I work a normally physical job. I live year round at a 400+ acre camp and times call for me to be at one end to the other. I adapt everyday, and I push myself because I love what I am doing. I do regret pain later when it's too much, but I am so glad that I am still me doing what I need and want to be doing that I can handle it.

I have been in places in my life where it was hard to think about anything but my disease and blaming all my life's shortcomings on the unfairness of RA. Dance, my work with kids, my family/friends, and more change that. I don't know how severe my RA will be from day to day, but that uncertainty doesn't get to define me. I know that I will continue dancing and I won't forget what I [do] for love.

Here are the lyrics:

[Diana]Kiss today goodbye,
The sweetness and the sorrow.
Wish me luck, the same to you.
But I can't regret
What I did for love, what I did for love.
Look my eyes are dry.
The gift was ours to borrow.
It's as if we always knew,
And I won't forget what I did for love,
What I did for love.
Gone,
Love is never gone.
As we travel on,
Love's what we'll remember.
Kiss today goodbye,
And point me t'ward tomorrow.
We did what we had to do.
Won't forget, can't regret
What I did forLove
[All]What I did forLove
[Diana]What I did for...
[All (adding more voices each phrase)]Love
Love is never gone
As we travel on
Love's what we'll remember
Kiss today goodbye.
[Diana]And point me t'ward tomorrow.
[All]Point me t'ward tomorrow
We did what we had to do.
Won't forget, can't regret
What I did for love.
What I did for love.
[Diana]What I did for love
[All]Love
Lyrics by Marvin Hamlisch from Chorus Line's What I Did for Love

More Rain

2009-10-16T16:41:00.000-07:00

We have been having a deluge of rain after rain. I live on an island in the Puget Sound, so life just seems impossibly wet when I wake and see the angry sound and the streaming rain. It was really just a factor of my pain this morning though. My body has been unhappy this last week. Rain sure doesn't help, but not solely to blame. I have began taking prescription meds again after nearly a year of ignoring my RA. I of course forgot about how taking medicine comes with side effects and is not always a welcome addition in those first few weeks.

We had a school group this week, and I was playing double duty, working in the kitchen and teaching. I should have asked for time off and rested, but they really needed the help. It proved to be detrimental as I woke up with a severely inflamed left hip yesterday. I worked despite my pain, and am paying for it today. I was stuck in bed all morning, and my joints all screaming in protest.

So, not having a great day. Seems silly that I forgot about all the side effects. That is one of the reasons that I had to stop so many of previous prescriptions, that and lack of insurance for a time. RA can be such an inconvenience sometimes! Having pain is one thing, but anticipating the extra from the meds? It drives me crazy.

The good thing about today was that I wasn't needed. So, I don't have to feel guilty about being in bed. I am hoping taking it easy today, will help. I am teaching and prepping for a rental group tomorrow. So, catching up on sleep, watching tv online, working on my current crochet project, and watching the rain.

Blogging

2009-10-15T00:04:00.000-07:00

I have been overthinking my disease lately, and stumbled across some RA blogs. The more I read the more there appeared to be. I was struck by this community of writers all living with RA. I use to have a blog, of course it was not exclusively about my disease, RA was one of its feature players. I am a bit embarrassed about it now, I was so angry and obnoxious - to be fair, it was my early years of the diagnosis. So, this is something different.
I hope to make this a place where I can write, and tell my stories. Not just being alone with this.

I do not like to talk about my RA, especially that first awkward moment. I don't know how to begin. Do I start with where my story started? Do I start with that first rheumy visit? Do I tell them each day is pain? There is no easy way. Some people have seen this disease envelope my life and know so much about it, and others I have known for years know just a tidbit or nothing at all. I hide it, I lie, and I fake it. Have you heard "Fake it until you make it"? I fake how fine I am, it's easier than explaining. So, really this blogging isn't going to be easy, but I think it is going to go a long way in helping me have a healthier relationship with this disease.

So, starting with some information of who I am and how I am.

I am 25 and work at a camp in Washington state. I am an assistant director and here in the fall a program guru. I love what I do, and have been working with camps since I was 16. My RA was first discovered 6 summers ago. I was working at a different camp and collapsed from pain, after a trip to the nearby clinic, a nurse who has a sister with RA told me she had suspicions and they decided to do some tests. It was the first time I remember anyone taking my blood and I returned on pain meds back to my job. I was told over the next few months how lucky I was that I had such an aggressive form of RA that it was discovered so quickly. It's true the first symptoms I remember were from may of that year. But, I never felt lucky rather, I felt bruised by that statement. I had to make phone calls to my mother who was a nurse, to explain to me what everything meant, and her telling me that I could be crippled. Thus a cycle of doctor visits began, I learned that specialists take weeks for appts or months in my case. It was on October 16, 2003 that I was fully diagnosed and wanting so much to be the 19 year old sophomore in college that I imagined the year before.
There is a rollercoaster of stories in those 6 years, that I am sure to relate later, but that is how it started. I am currently seeing a new rheumatologist for me. She is my 4th one and I like how well she listens. I am planning on starting rituxin again, I have taken it two years previously(06-07), I have tried most of the meds on the market and it is the only one that really helped. It is nice to know what works :) I am also taking sulindac for inflammation, tramodone for pain, the dreaded prednisone so I don't limp and cry, imuran to work with rituxin, and a slew of supplements.

That is a starter. Since I can still hear the rain, I must get to sleep. I am going to need my rest. Goodnight.