I need more spoons*....(an anniversary, of sorts)

It's hard to believe, but this month marks five years since I was diagnosed with Rheumatoid Arthritis.

Five years of daily challenges. Five years of almost constant exhaustion and pain. Five years of never having enough spoons. Five years of pushing myself more and more. Five years of finding out who will always be on my side. Five years of fear and worry. Five years of working with the Arthritis Foundation and meeting some truly amazing people. Five years of bad nights of sleep and worse mornings. Five years of realizing how much strength I have inside of me.

Five years. It seems like a million. It's hard to remember not being sick, not having a chronic condition that forces me to slow down.

Five years of give and take. Of every choice I make during the day having a bearing on what I can do later on. Of making trades - I can go out this night, but the next I need to be in bed at 9. I can play softball two nights a week, but then I need to rest for two days. I can go grocery shopping today, but I can't cook until tomorrow.

Of course, not every day is like this. Some days I have more energy than others. Some days, it's easy to forget that I'm sick. And to look at me, most people wouldn't guess that I'm not a typical, healthy 20-something. That's life with an invisible disease - nothing to show the pain you're in, how tired you are, how the meds you just started are making you sick every morning, how you literally roll out of bed in the morning, because you can't bend your knees to stand....

But the people who know you, who see you often - even if they don't know about your illness, even if you've never said anything - they see the signs - the big, scary bags under your eyes. The IcyHot you keep on your desk. The flats you bring to work in case your heels become too much. The slow, hitching walk of someone who is fighting to get through every step. Your friends familiar with your situation will try to understand, but it's impossible. Until you have been in it, you just can't get it. People can usually understand the physical challenges, but the emotional and mental struggles? How can you really describe the frustration of not being able to do simple tasks? How can you put into words how embarrassing it is to have to ask someone to tie your shoes for you, or open a bottle of soda? Sure, you try to laugh it off, try to act like losing control isn't killing you, but it is. And for me, someone who is independent and stubborn to the core? I will make a million jokes before I admit how helpless I feel. I will struggle with something for hours before I admit defeat. And I will hold my head up until I am safely alone before I break down.

But the good things? I've seen the good in a lot of people. I have met amazing people, both online and off, who struggle with RA and Lupus and OA and any number of other autoimmune diseases. I have a great support system, between them, and my amazing family and friends. I have grown up and grown stronger. I've learned to slow down - that everything doesn't always have to be done at warp speed. I've started to take care of myself better.

And I'm ready to take on the next five, and however many come after that. RA, prepare to get your ass kicked.

---------------------------------
*Title comes from The Spoon Theory by Christine Miserandino at But You Don't Look Sick. One of the best things I've seen that tries to explain life with a chronic illness.

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

Crawling in the dark...(Life with RA)

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