The Best of Me....(Spin Cycle, part 2)

This second part of this week's Spin was again, pretty easy to come up with, especially since RA has been affecting me a lot the last couple of weeks. I've been having some pretty awful flares, and besides making me tired and cranky, I'm overemotional from lack of sleep and frustration. This is something I almost want to have printed out and ready to hand to people so they can understand what I'm dealing with daily, and in some cases, cut me a little slack.

Crawling in the dark...(Life with RA) (11/12/08)

I was diagnosed with Rheumatoid Arthritis in 2005, when I was 22. I had gone into my primary physician complaining of lethargy and body aches, figuring I had some kind of virus, and after a course of antibiotics I’d be back to my old self. My doctor did some blood work, and found that my sedimentation rate was high, which suggested inflammation. She referred me to a rheumatologist, concerned that my symptoms could be a sign of either Rheumatoid Arthritis (RA) or Lupus, and I set up an appointment for a few weeks later.
My initial appointment was spent answering A LOT of questions about when I had the most pain, what different conditions, when I felt most tired, where the pain was worst, and on and on. I also got a lot of blood work done, and had x-rays taken of my chest, wrists, fingers, and knees. By the end of the appointment, my doctor thought that I showed symptoms of RA, and started me on 200mg daily of Celebrex, a non-steroidal anti-inflammatory drug (NSAID). I scheduled a follow-up for a month later, a few days after my 23rd birthday.
In the three years since then, I have been to the doctor more times than I care to count. I have had more blood drawn than seems humanly possible, and spent far too much money on medication and Icy-Hot. Not quite what I imagined my life would be like at 26.
I have been lucky.
My RA doesn’t seem to be progressing all that rapidly. I have been able to stay with Celebrex, and last year added Plaquenil to my daily oral dosings. Plaquenil is a disease-modifying antirheumatic drug (DMARD) that has been shown to prevent swelling and pain in arthritis sufferers, although, from my research, it’s not known quite how it works. With these two drugs, I have been extremely happy to discover I don’t have any major side effects.
However, in the last year, I was forced to switch from Celebrex to Aleve when my insurance no longer covered Celebrex. Painwise, the Aleve was successful. Unfortunately, taking it at the dosage I required caused me to have stomach pain, and after an endoscopy in August, I discovered that I have pre-ulcers. Now I am on a Tylenol regimen that isn’t nearly as effective, until my preauthorization to get Celebrex covered again comes through.
Occasionally I will go on a course of Prednisone, a steroid that reduces inflammation. This drug affects me in many ways, and I prefer to stay away from it. I become a different person when I am using it, prone to sudden mood swings, going from lethargic and mellow to bouncing off the walls. It also can cause weight gain, and sure enough, every time I use prednisone, I suddenly seem to have an extra 5-10 pounds or more that appears as if by magic, no matter what I do to prevent that. That in itself is an oxymoron, as I know that if I lose weight, my RA symptoms will ease, but every time I get into that groove, I end up on steroids again and balloon back up.
Even though my RA isn’t always that bad, there are times I have flare ups that make the simplest task seem impossible. There have been days where I’ve had to literally roll myself out of bed, and crawl to the shower, because I know hot water is the only thing that will help with my morning stiffness. Those mornings I thank God and my roommate that I got the room with the attached bathroom. Sometimes when my wrists and fingers are acting up, I find myself fighting tears at work because not only can I not type, and do my job, I can’t even focus enough to try. I’ve had many restless nights, unable to sleep because of pain in my hips, or knees, or shoulders, or ankles. And there have been too many times where I wanted to do something, but after having to drag myself around all day, I’m simply too exhausted to do more than collapse on the couch and stare into space.
Cold weather is difficult as well – it makes the swelling of my fingers worse, and they actually turn purple. This is something called Raynaud's, and it is common in patients with RA. It’s not unusual to see me wearing gloves a lot once the weather turns cooler, in an attempt to keep my joints warm enough to function. Flying is especially bad – something about the cabin pressure and the cooler temperature – and I’ve been known to don gloves on flights in the middle of summer.
Living with RA is difficult, and not necessarily because of the symptoms of the disease. Rheumatoid arthritis is not an illness with visibility. You can’t see someone suffering from RA and know what they’re living with. People who don’t know my situation probably think I’m lazy on my bad days, when I take the elevator up one floor at work, or when I mention that I’m going right home from work and sleeping. It’s not an image I want coworkers to have of me, but the sad truth is, RA has affected my life more than I thought possible when I was diagnosed.
There is no rheumatoid arthritis in my family that I know of. RA isn’t necessarily a genetic disease, although it can be passed down. Doctors don’t know why some people get RA and some don’t. RA doesn’t only hit senior citizens. There is no age restriction for arthritis. However, from what I’ve found in research, my age at diagnosis was slightly more unusual, as most people develop RA between the ages of 25 and 50. Women are affected by RA three times more often than men.
Being a 26 year old woman with rheumatoid arthritis is an experience, and since diagnosis, a new set of fears. I face day to day challenges on some of the most routine tasks that I’ve been doing for years. Tying my shoes, walking up stairs, brushing my hair...all things I’ve done without issue since I was a child, but now have problems with. And new fears? I’m scared that the things that I’ve always counted on in my life will never happen. I’m afraid that by the time I’m ready to have children, my disease will have progressed to the point where I won’t be able to, or I won’t have the energy to play with them if I am able to have them. I’m scared that I will lose my independence at a much younger age that I ever could have guessed, and my freedom is something I value more than most things.
I do try to be more active to help keep me mobile and energized. I bounce back and forth on Weight Watchers – again, it’s hard to stay motivated when a part of me knows that the next time I’m back on certain medications, I’ll just fail again. But I press on – trying to change my lifestyle to keep myself from requiring hip replacement surgery in my thirties.
I have to say that not everything has been bad since being diagnosed. I’ve really learned how many people care about me in the last few years. My family has pulled around me, and my friends have been a huge support. I’ve surrounded myself with amazing people, and it’s paying off. There are days when I don’t want to go to work, don’t want to leave my apartment, don’t even want to get out of bed, but I know I have people I can reach for, or call, and they’ll put some motivation back into me.
I’ve also learned how strong I am. How I can work through pain and fear and confusion and get things done. How I can inspire others, and inspire myself.
I have been lucky. On so many levels.
However, I know luck changes. But I also know that if and when it does, I have the strength of my family, and my friends to get me through it. More than that, I know that I have the strength within myself to push through whatever this life throws at me.

This December I will be participating in the Arthritis Foundation's Annual Jingle Bell 5K. December 7th marks my 4th year walking, and I am eager to once again face the challenge - 3.2 miles that start with a fairly intimidating hill, usually tromping through ice and snow. I've done it 3 times before, and I can do it again.

I'm asking for support doing this - my hope is that even if there is no cure found in time to help me, maybe research will develop new treatments with less side effects, or even a cure by the time my future children may have to deal with this.
If you have the ability, please sponsor me in the Jingle Bell Walk. I truly appreciate every donation, no matter the size. If you can't donate, please keep me in your thoughts on December 7th!

Thank you all for the support and encouragement!

To donate: My Fundraising Page

November 2005 Article about me in Oakland Press

The Best of Me....(Spin Cycle, part 1)

This week's Spin Cycle assignment is an easy one - find your favorite post in your archives, and add an intro. Since I've had no time lately in which to actually blog (I swear, I really am going to get caught up. Someday. 2012, perhaps?) this seemed ideal. I have two that'll I'll be using.

My first favorite post was easy to come up with - this is the post that has been passed around coworkers, blogger friends, random acquaintances. It was featured on Good Mom/Bad Mom one Sunday (still the pride of my blogging-life) and I still laugh/cringe every time I read.

Enjoy.


'No, those are NOT my Magnum condoms' (or, why I will never use U-Scan again) (8/26/08)

Anyone who knows me knows that I am not the girl to get easily embarrassed.
Fall off a table while dancing? Check. (and I was sober!)
Puke on a fire hydrant while hungover? Check. (no, I'm not proud)
Accidentally tell an [ex]co-worker about the sex dream they played a large role in? Double check. (alcohol was possibly involved)
Fart in mixed company? Many, many, many checks.
Sing inappropriate songs of the 90s in front of coworkers? Too many times to count. (and sadly, no, alcohol was not ALWAYS involved)

So yes, been there. Done that. Laughed about it afterwards. Sometimes for years, because some of those stories just won't die....

But until tonight, I have never know true mortification.

It starts out simply, and innocently, enough. I stopped at Meijer on the way home to pick up some fruit, a few Lean Cuisines, diet soda, some hair smoothing crap.

Looking at the two lanes that were actually open, and twelve people deep each, I decided to just skip to the U-Scan. This isn't unusual, as unless I am doing one of my semi-annual large shopping trips, I usually opt for the 'quicker' route.

Today though...oh no. Not today.

I waited patiently in line, and when the man in front of me had grabbed his bags and left, I moseyed on up to the scanner, and proceeded to scan my eleven or so items, bagging them as I went. I was impressed with myself because at this point, my trip had only taken me 15 minutes, and $30, and this is very unusual for me. Anywhere.

After I signed the little card reader that would make John Hancock's signature look like it was scrawled by a monkey with no thumb, I loaded my few bags into my tiny cart (yes, I know, I had four bags, but anytime I don't use one, I inevitably rip at least two bags, and end up losing a jar of pickles or a gallon of milk to the parking lot) and headed for the door.

Nothing spectacular, right?

As soon as I pushed my cart through the exit, the alarm goes off. Naturally, I stopped right in the middle of the door, confused as to what this loud noise was, and why a man in a red shirt was waving at me to come back.

Figuring the only interesting thing they would find would be that I had already scarfed down a Reese's Peanut Butter Cup in the time I waited in line (read: 2 seconds), I turned around, and when man in red shirt asked if I minded waiting for the manager, I assured him that was fine. And when said manager (let's call him Steve - that's a bad name for me, and this was NOT a fun experience) came up to the front, and asked if I minded him looking through my grocery bags, I agreed once again. I handed him my receipt and stood back, assuming it was my MP3 player or cell phone that set off the alarm, as they are wont to do.

So imagine my complete and utter surprise when Steve pulls out a box of Trojan Magnum-XL condoms, and asks if I was planning on paying for them.....

I'm pretty sure my jaw is still recovering from hitting itself on the floor.

Confused, but still trying not to laugh, I told Steve that I hadn't been down that aisle - to be honest, I don't even know which aisle that is. In my nervousness, I am sure I gave that poor man waaaay too much information about my lack of the sex. In turn, I maybe just gave all you readers too much information as well, but that's neither here nor there.

At this point, Steve has turned as red as red shirt guy's red shirt. I'm pretty sure I had totally slipped into nervous laughter and stuttering, as I tried to explain that I definitely did not 'accidentally' throw those in my bag.

Red shirt guy is standing to the side, continuing to help the inept people trying to scan their groceries, and comes up with the brilliant (seriously, he was smarter than Steve - someone needs a raise and promotion) idea of looking at the receipt log, to see if maybe a customer before me had paid for them, bagged them, and accidentally left them.

Turns out, it was the guy before me.

Many many years back, I dated a boy (we were young, back then) who was well over 6 feet tall, and probably 120 pounds soaking wet.

The guy in front of me? Could have been his double. If you subtracted about a foot, leaving him a few inches shorter than myself. Add in a soul patch and a creepy thin mustache, take off about 10 pounds. Douse in Polo Sport (delicious smell, but really guys? Moderation? Is key.)

Manager Steve now feels bad for essentially accusing me of shoplifting enormous condoms. They've been paid for. Creepy little man has probably left the parking lot at this point. So what is the natural course of action?

Obviously, offer the tomato-faced girl who has just bemoaned her lack of a man-friend a free pack of Magnum-XLs. That'll make her feel SO much better. And definitely less humiliated.

I politely declined, but it seemed like Steve was insisting. For one crazy moment, I figured I could just hand them off to a friend that might find them useful.

Then I realized -- I can easily live the rest of my life without knowing which of my friends (or their lovahs) require extra-large condoms. I'm pretty sure it would always be creeping up in the back of my mind - 'Hi Jane, this is my friend John Doe. He needs MAGNUM-XLs! Lucky you!! Woot woot!'

No thanks. That's just information I should never encounter.

Luckily, or perhaps unluckily, before I could once again refuse, Creepy Little Guy from before ran in, sweating, and blew right past Steve and I, checked the empty scanner/bagging area that we had previously shared, and then turned to Red Shirt: 'Um, I think...I mean, I know...I left a bag...I bought some things...and forgot them. And I really need...my things. Did someone find them?'

Red Shirt pointed him in our direction, and Steve quietly said to me 'Sorry for the hassle...have a nice night' as he swiftly grabbed the box out of my bag, ran it over the sensor deactivator, put it in an empty bag, and handed it over to CLG.

At this point, I was already hightailing it out of the store so I wouldn't start laughing so hysterically that I peed myself, but had to step aside as CLG ran past me yet again, then proceeded to stop, turn, and say 'Hate to run outta these!' followed by a wink.

I got in my car and laughed for a good ten minutes before I felt sane enough to drive home.

So, summary?

Groceries - $30
Time shopping/in line - 16 minutes
Time spent with a rogue box of condoms - 20 minutes
Leaving your dignity somewhere between the 1 penny pony rides, and bags of charcoal - Priceless

catching up.....

What? It's been a month?

Hoooooly crap do I have a lot to share.

Tonight, when I get home from work, I will be catching up on a month of blog posts from all you other lovelies (or at least the last week or so...otherwise my head might explode) and then sharing my last moon cycle's worth of stories.....after all, gotta know what's going on before this weekend!