Showing posts with label health. Show all posts
Showing posts with label health. Show all posts

6.10.2010

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.

2.28.2010

Here goes nothing....

Many years ago (okay, three) I started Weight Watchers. I did well on the program, losing about 35-40 pounds.

Three years later, it's almost all back. And I have sacrificed my health and appearance for the sake of Ben and Jerry's, which, to be honest, up until now has been an alright trade-off for me.

No more.

Last night, I re-enrolled in Weight Watchers online. Luckily, it saved my information from the last time, and I discovered I am still down from when I began (by all of 4.8 pounds, but I'm not going to turn my nose up at that).

Today? Day 1. Fresh start.

7.31.2009

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

5.01.2009

All these mistakes I've made....and all the ways I've changed.....

I've failed out of college.
Twice.

The first time, my freshman year at Western Michigan University. When I started the year, I was 'the good girl.' I had never had a drink in my life before that. I was actively involved at my church back home, and for the first two months, did an admirable job of trying to stick to my previously-untested scruples. But it was college, and I was 18, and I had freedom for the first time in my life, so eventually, I caved in. And went down in a blaze of glory. There was no shot I wouldn't try, no party I wouldn't go to, no drunken frat boy I wouldn't make out with. For a girl who had spent high school as a bit of an outsider, kissing two guys all through my teen years, sudden male attention was too much for me to handle. I ate it up, and spent months getting wasted and throwing myself at whatever boy stood too close. It wasn't til I got to know the guy who would become the most heart-breaking, real, wonderful, tear-inducing, sweet, encouraging, gut-wrenching man in my life (but that is a much different story), that I realized I had just spent six months trying to find what I had with him. I settled down, but by then it was too late. I had spent too long in the cycle of partying, sleeping in, hangovers, skipping class, and basically ignoring what I was supposed to be doing in Kalamazoo to make up for the fact that I messed up. I left the school in April knowing I wouldn't be going back.
When I got back to my hometown, I was embarrassed and ashamed, but mostly, disappointed in myself. Here I was, a girl who graduated with honors, who generally was on the honor roll, never got into trouble, had known she was off to do great things, coming home a failure. I went back to my high school job, and that first summer, saw old friends from high school often, always avoiding the question of how my first year of college went.
I was determined to change my story.
I enrolled in a community college near home. I started in September, excited, and confident that I would thrive here. My semester began strong, and I was sure that I was just going to do this for a year before I moved on to another university, perhaps something other than a general state school. I dreamt of art and design school, of going into advertising, or becoming a photographer, or an interior designer. I knew I was destined for greatness.
But old habits die hard, and soon I was falling back into my old ways. The partying was no longer the issue - it was just laziness, not caring, not knowing what I wanted. After a few semesters, I once again found myself on the receiving end of an academic dismissal letter. This time I was furious. What the hell was wrong with me? I should have been having the time of my life, doing what I loved - meeting new people, and learning as much as I could about...as much as I could. Why were the idiots I knew in high school beating me now?

I took a little time off. I threw myself into working, bouncing from job to job as soon as a better opportunity opened up. I made more friends in the area, and spent every waking moment with them. I had lost who I was, but I was finding myself again, and in a different light. I was no longer the smart girl, the good girl, the sweet girl. The world had kicked me down, I had let it, and I was no longer going to just lie down and take it.

So I tried again...another community college, with an interior design program. When I realized how much I hated that, I switched to photography and finally found my niche. I was good. I had an eye for it, and I found my home in the darkroom. Any time I didn't have a camera around my neck or my hands covered in developer, I was framing shots in my head - eating dinner with my parents, driving to work, sitting at the coffee shop I frequented. I started to believe that this was my calling, and started to make plans - major in business and photography, start my own studio, make a living off shooting weddings and pictures of babies and dogs, and make my life whole by keeping my dad's old Minolta with me at all times, finding beauty in everyday scenes. I was ecstatic that I finally had a purpose, a talent, something that made me feel alive.

But then the pain started....at first it was just an annoyance....my ankles that kept cracking whenever I moved, the "growing pains" that were unexplainable - at 22 I wasn't getting any taller. My shoulders and hips ached, my wrists were on fire, and soon it spread into my fingers. I was popping upwards of twenty Motrin a day, and still barely able to get around. I couldn't sleep because of the pain. In the morning, I couldn't move my joints without agony. The only fix was to crawl to the shower, struggle to reach the faucet, and then huddle on the floor while hot water pounded over me. I started making doctor appointments, and after months of tests and medication, I was diagnosed with Rheumatoid Arthritis. I took the news as well as could be expected, but after research and more appointments with my specialist, realized that making a living as a photographer wouldn't be likely. The constant activity, the cold, the minute movements required to be successful - as much as I wanted the dream, I didn't want to ruin my body by doing it. I knew it would be a hobby, but nothing more.

And so once again, I threw myself into work. I decided I was done with school, and focused on learning as much as I could hands-on. I went as far as I could at one job, and started another. After the initial few months of panic, of feeling in over my head, I slowly became more confident. People started to depend on me. My opinion was valued. My company was great to work for. I made great friends, and really enjoyed what I was doing. Through it all, I waited for the restlessness - the itch that came after a year and a half or two years to move on. But it never came. I was happy with where I was, and sure that I had a long future ahead of me.

One morning, shortly after I turned 26, I woke up wondering when I'd become so complacent. Sure, I loved my job, but where was it headed? In my department, there's no real room for growth...just a steady source of income, and the same thing, day after day. There were challenges, sure, but nothing I couldn't conquer within a few hours. I was starting to get bored again.

Instead of jumping ship, as had become my way, I suddenly made the decision - I was going back to school. I'd get my business degree, move to research, and then basically take over the world. I decided that on a Tuesday morning, and by Wednesday night, my application to Eastern Michigan University was submitted, and transcript requests to my previous three schools were on their way. My ACT scores had been requested, and I was beginning to compose a letter to the transfer director, making my case - maybe my GPA wasn't pretty to look at, but damnit, I was motivated!

A few weeks later, I was accepted, and a couple months after that, I met with an advisor. I picked my classes for winter semester, filled out my financial aid forms, and prepared to lose most of my social life for a couple of years.

January 5th came, and classes began. I walked in each day ready to learn. I attacked my online classes with gusto, and became a standout student in both. My speech class was a piece of cake (God knows I love to talk) and even my statistics class was going well. I studied hard, worked my ass off, and for three and a half months, lugged around a heavy backpack so I could do homework on my lunch at work, or while watching a movie at a friend's. This time, I knew, I would succeed.

And at the end of my first semester back at school, I have exceeded my expectations. I finished the term with a 3.57 - 3 A's, and a C+ in that pesky stats class (still above my goal of a C). I made the Dean's List, I applied for a scholarship that I became eligible for, and more than that, received two recommendation letters that proved to myself how capable I had become - one from my Business Communications professor, and one from a VP at work that I work with often. I decided to take a break for spring semester, and only one class in the summer, but this fall, I'll be back full time again, with 4 classes.

For the first time in my life, I am eagerly anticipating the second semester at a school. And with all the mistakes I made the first couple of times, the disappointment of the third, and the personal failures, challenges, and triumphs along the way, I know I am ready to take on the world, and this time, instead of getting kicked down, I will kick ass.

11.12.2008

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

8.11.2008

It's only forever, not long at all...

Yesterday, the world was spinning...or maybe it was just me.

Today, I fell out of bed because I couldn't focus on anything.

Went to the doctor, because I decided neither of those things was good...

Turns out I have Labyrinthitis (inner ear infection)

Is it bad that when the doctor told me that, I started quoting lines from the wonderful David Bowie movie?


Jareth: You remind me of the babe.
Goblin: What babe?
J: The babe with the power.
G: What power?
J: The power of voodoo.
G: Who do?
J: You do.
G: Do what?
J: Remind me of the babe.



What can I say? I'm a child of the 80s...
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