Inspired by Brad Wardell and stevendedalus

now...that's an odd couple if I ever saw one....

Published on March 19, 2004 By KarmaGirl In Politics

This is really a bit of a response to some comments on: https://www.joeuser.com/forums.asp?MID=3&CMID=3&AID=10569#30806

The first comment was from stevendedalus "The problem is that those of us blest with a deep sense of self-responsibility don't ever seem to face the tough challenges that others less gifted are helplessly trapped in." After which Brad gave a glimpse of "me".

I usually don't say much about my life because I don't *ever* want anyone to feel sorry for me. I don't want sympathy. I am not a victim. I make the most of my life, and define myself. I don't let "things that happen" define me.

As I stated earlier, I grew up in a small town middle class family. I had no "benefits" other than my family. On the flip side, I had a lot of "bad" things that have happened.

I was sick for most of my childhood. I couldn't run as I wouldn't be able to breathe. It wasn't asthma. It was something that would reveal itself much later in life. A few years later I started to grow "bumps" on joints in my body. I was sick, tired, and in pain. The lumps ended up being rheumatoid nodules. The cause was rheumatoid arthritis. I was 13.

I had to have surgery to remove the nodules as they were effecting movement. I was on major pain medication. At that time, doctors believed that arthritis should be treated with inactivity. I was excused from gym class and told to relax as much as possible. I didn't listen to them (which ended up being good for me) and continued to be a "kid". I was told that I would be in a wheelchair by 21 and I should make plans for that. I was labeled as "disabled".

At 15 I started having other problems. Odd problems that nobody could figure out. At 17 they realized that my thyroid was barely working. It was cystic and part of it needed to be removed to rule out cancer. That was the first thyroid operation that I had. I missed part of my Freshman year at University because of it. I was sick. I was considered "disabled" and was allowed to have a car on campus even though I was only a freshman. I never got myself back together. After 1 1/2 years at school I was dismissed. But, it wasn't over. I knew I was on my way out, so I made arrangements with another school and started where I left off.

I battled arthritis and thyroid problems for my entire school history. I was in pain, tired, and never felt "right". But, I also wanted to have a good life, so I continued on. I eventually met my husband while at school, moved to a different city (supported myself on little cash), got the job I have now (almost 9 years ago) and kept on working. I had some very odd things happen to me (like losing vision) that nobody could explain. Odd things happened, but they were really just warnings to what was "really" wrong.

We then decided to start a family. The first part of my pregnancy was perfect. The final 3 months were hell. My health was degrading and they didn't know why. I had preterm labor and had to sleep in a recliner so that contractions wouldn't start (even on medication). I was induced 3 weeks early due to hypertension and other health issues. My baby was healthy, but I was not.

This started the first full "flare" that I experienced. I lost all my hair- in big chunks. I had really long hair. It was very unnerving. My thyroid levels could not be regulated. I had rashes. I had signs of kidney disease and I had a mini-stroke. There was finally enough there to know what had plagued me all my life- Systemic Lupus. Again, for the third time, I was diagnosed as "disabled". Systemic Lupus is not a "treatable" disease. It effects many parts of your body at different times.You never know what will happen. You could lose hair, go blind, lose mobility, have slurred speech, etc. You don't know what will hit you or when.

When I was diagnosed, I sat and really had a look at my life. Yep, this wasn't going away. I could either give in and be defined by it, or I could just "deal with it" and continue on. I chose the second option. I have missed work. I use my vacation days for doctor appointments, surgery (I later had to have the rest of my thyroid removed), and times when I can't see or something like that. But, I work. I also have a part time photography business. I stay active. I enjoy life. Lupus is part of my life, but it is not who I am. It's an inconvenience. It's something that I deal with. My thyroid is still unregulated. The doctors can't seem to find a brand of hormone that my body will use right. My arthritis still gets me (I'm facing ankle surgery currently as some new nodules have decided to claim my right ankle). But, that is life. It's not fair, but life isn't fair.

So, that is where I come from. I'm not somebody who has been "unchallenged" in life. I am not somebody who just fell into some great life and can have these high ideals for everyone else. I know that people can live beyond their problems. Take the challenges that face them. It takes determination and a will to overcome your issues.

Thank you Brad for prompting me to write this. Thank you stevendedalus for the ability to see that not everyone is the same just because they have a certain view.

Comments

bakerstreet

on Mar 19, 2004

I have had Crohn's disease since my late teens, and that is just enough annoyance to understand that I could never understand the extent of what you have gone through. I think people give suffering too much credit for making people what they are. Some people handle it well, others fold up. It is a testament to who you are that you have handled it all so well. Thanks for this.

Wahkonta Anathema

on Mar 19, 2004

Truly inspirational and I thank you for sharing it. I use such examples to keep me moving when I have no other reason and begin to feel malaise. My momentary lapse is no excuse to let myself down, while others are dealing with much worse more effectively, and I get up and go.

mittens

on Mar 19, 2004

Between this article and your "Personal Hang-Ups" article, I'm starting to get the feeling we have similar views on the things that happen to us. I had a very rough childhood, and after the age of 13-14, I started to get very sick. For two or three years, I was hardly able to eat anything (getting used to a bad case of GERD really is tough, especially at that age), and have had chronic headaches since I was 8 or 9. That's just my physical problems, I also had some very bad experiences growing up that let to a rather unstable high school career (and, considering I'm just finishing my first year at the University of Michigan, this isn't too long ago). However, instead of letting these things get me down or define "who I am," I just decide that these kinds of things are obstacles that I need to deal with, and each time one is conquered, it makes me a stronger person.

However, reading your article made me feel like my experiences growing up were nothing, and to read how you feel about your life now is an incredible testament to your character. An inspirational story at its best.

JillUser

on Mar 19, 2004

People never know exactly how they will deal with something until they are faced with it. I am pretty sure I would have a period of feeling sorry for myself in your position but hope I would overcome it. I am truly fortunate that I have only had minor health problems in my life. Couple surgeries, chronic sinus problems and a couple of miscarriages. It is always a good thing to keep in mind that things could be much worse when you are feeling down. Stories like yours are good for keeping that fact in mind.

Inspirational indeed! Thank you for sharing.

crazy lady

on Mar 19, 2004

That is the most beautiful and inspirational article I have ever read. Your inspiration and your words are a treasure.
Thank you.

dharmagrl

on Mar 19, 2004

You rock, Karma. You're a kick-ass chick, you really are.

I wish I could give you a big ol' hug...

...and you really are an inspiration. Thank YOU.

messybuu

on Mar 19, 2004

That's terrible, but it's great to see that you don't let it control your life. I was one of those people who let my "disability" control my life, and it wasn't even much of a disability (a twitching disorder that's noticeable but not as bad as it could be (i.e. tourette syndrome) and some speech impediments). I thought that because I couldn't speak as well as others and that I blinked too often, that I was a freak who could never fit into society, and for the most part, I was right, but not because of the disorders I had, but because of how I acted in response to those disorders. Still, when one really wants to be a loser who can't get anywhere in life, even something as tame as my disorders could feel too great to overcome.

Anthony R

on Mar 19, 2004

Battling with poor health is a tough fight; I had asthma when I was a kid. When I was about seven, the family and I went on a vacation to Paradise Island, (Bahamas). My dad thought it would be a good idea to take me on a marching drill of the entire Paradise Island, to make a long story short the big mama Luke almost killed me. I got back to the hotel and started wheezing, my sister thought it was just about the funniest damn thing she ever saw in her life until I turned blue and passed out. I suffered with asthma for three or four years, I had wheezing and tracheal tugging, but thankfully I recovered, or “grew out of it.” I suffered from a couple other non natural events in my life but that was the only illness that was similar to yours that I could relate to, I like Bob Marley a lot, stuff like “get up stand up” and all those awesome Island grooves, I know that is strange, a white boy republican, grooving to island beats, rather peculiar.

Well alright we jamming…

WiseFawn

on Mar 19, 2004

I'm glad that you shared your story. It is always good to know where someone is coming from. It's wonderful that you have that inner strength and I'm guessing wonderful support from your husband and your boss! And your honesty has inspired me to share a bit of my story with you. I have a lovely 22 year old daughter, who has been ill for all of her life. Among other things, she, too has auto immune disaease, which so far has come out in Crohn's Disease, Graves Disease and Arthitis. Her teenage years were the worse, physically. She went through a time of being on prednisone and about twelve other meds along with chemotherapy. After a trip to the doctor, we came home to find that my husband had packed and left, leaving a twenty dollar bill and a note. He cold no longer handle her sicknesses. I was homeschooling her at the time. I started a business to be able to continue schooling her and be there with her. I asked for assitance. I could not afford her meds, doctor's visits, tests, etc. She is a lovely young woman, never for a second letting her illness define her, either.
Great post!

Pam Johnson

on Mar 20, 2004

After reading your article I find that being a 57 year old diadetic is not all that bad. I have been since age two, and a type I mellitus since age nine. I lost my first leg at 19, and the second at 27, however, my life has been without problems since. Yes I take my shots four times a day. But, I have not had to go through the pain you have. Life is to precious to let the the little things brother you, and it is because of people like you who help me remember that there are worse things in life that a needle. Take care, and always remember there are people out there who cannot go through your pain, but they can give of themselves in hopes that it will help you in some small way.

Pam

stevendedalus

on Mar 20, 2004

My mother always reminded me whenever I complained about some stupid inconvenience, "You have your health, that's all that matters." I've carried that message to my own kids when they would piss and moan over how "tough" they have it. Then I would tell them about my two cousins with muscular distrophy and how after my discharge from the marines and thankful I came out unscathed, I would help my uncle give them baths once a week because they were like dead weight. That went on for five years until they both passed away within months apart. I shall never forget how important, nay, blessed, to have good health. I am indebted to Brad for wising me up about you and glad that it caused you to tell your heroically tragic but beautiful story. God Bless You.

JillUser

on Mar 20, 2004

KharmaGirl, do you find that people treat you a lot differently when they find out about your health problems? I bet it is a struggle between wanting people to know where you are coming from and not wanting people to base how they act toward you on that information.

KarmaGirl

on Mar 20, 2004

JillUser, yes, people do typically treat me different at first. Most people that have known me long term don't even think about it, though. But, online, it's a bit different. That is why I typically don't talk about it.

I do appreciate everyone's comments. But, I really don't find myself "inspirational" at all. To me, this is just part of my life. It's something that I deal with on a daily basis and don't give it a second thought. There are many people who have it worse off than I do. I have a very high tolerance for pain. Though the pain tires me out, I have learned to deal with it well. I don't complain much, but when I do, people know that it is *bad* LOL If I start complaining too much, my husband drives me to urgent care. One time I ignored my pain too long to the point that he had to scrape me off the floor after I fell out of bed. The hospital staff knew that I must have been in pain since I arrived with my jammies still on. It's actually kinda' funny in hind sight, but not too cool at the time LOL

Currently, I'm alive, I can see, I can walk and my hair is growing back in. Life is good!

Sherye Hanson

on Mar 20, 2004

Having a disability for many is a incentive to work harder and to not give in to the pain and the disease. You are certainly one of those. I remember when my life took a leap for the better and I left behind many of my friends who were stuck. I always wondered why. But what was harder for me to deal with was the chronic illness of my daughters. That was where I had to learn a different sort of toughness. I have had to teach them not only not to give up, but how to take care of themselves. That balance is hard to learn.

You have certainly earned the right to be proud of yourself.

Welcome Guest! Please take the time to register with us.
There are many great features available to you once you register, including:

Richer content, access to many features that are disabled for guests like commenting on the forums.
Access to a great community, with a massive database of many, many areas of interest.
Access to contests & subscription offers like exclusive emails.
It's simple, and FREE!