1. The illness I live with is:  Rheumatoid Arthritis (originally diagnosed as Juvenille)

2. I was diagnosed with it in the year: 1995

3. But I had symptoms since: 1993

4. The biggest adjustment I’ve had to make is: considering my limits each and every day.

5. Most people assume: I don’t know if I’d say most people, but a lot of people assume that since I am young, I am healthy.

6. The hardest part about mornings are: getting moving. Some days it is hard to move my hands, some it is my shoulders, others it is my feet. I never know what joint will bother me.

7. My favorite medical TV show is: House, for many reasons, but one is the fact that they actually did a story about JRA.

8. A gadget I couldn’t live without is: my jar opener and many other adaptive handles. Gripping and squeezing are usually difficult.

9. The hardest part about nights are: that sometimes it is hard to get comfortable. I can wake up many times in the middle of the night trying to fall back to sleep.

10. Each day I take 4 pills & vitamins. And inject myself weekly, which was very hard at first!

11. Regarding alternative treatments I: have tried them before and they were helpful, but did not help manage my disease the way medicines have.

12. If I had to choose between an invisible illness or visible I would choose: Neither? I think that both types of illness have their struggles and you really can’t compare them.

13. Regarding working and career: Working can be a daily struggle. Things like commuting, getting ready for work and making dinner after work can be difficult on bad days.

14. People would be surprised to know: Well, most people I don’t know are surprised to find out that I have arthritis. I think most of the people in my life are usually surprised at how difficult my day to day living can be.

15. The hardest thing to accept about my new reality has been: that there are things I just can’t do. As my disease has progressed I’ve gone from thinking that the only limits to my life were of my choosing, now I have limits that I must accept.

16. Something I never thought I could do with my illness that I did was: Going on a three country trip through Europe. I’m not sure I ever thought I absolutely couldn’t do this, but I was proud that I did.

17. The commercials about my illness: put out impressions about my illness that never really give people information about the disease. I appreciate that they show young, active people with RA, but this is most likely the widest exposure this disease gets.

18. Something I really miss doing since I was diagnosed is: picking up and going without thinking about how I would feel later.

19. It was really hard to have to give up: I have been lucky enough to not have to give up anything I love. I sometimes feel sad that I can no longer ski or ice skate, but these are very small things to lose for all that I have.

20. A new hobby I have taken up since my diagnosis is: Well, I’ve taken up many new hobbies in the last 15 years, but I have started writing a lot and really enjoy blogging. I’m working on two novels and have four blogs!

21. If I could have one day of feeling normal again I would: hike a mountain.

22. My illness has taught me: to appreciate every good day and be grateful for everything I have.

23. Want to know a secret? One thing people say that gets under my skin is:  when people throw around the word arthritis for minor aches and pains, or when they talk about arthritis as being for old people

24. But I love it when people: show how compassionate and caring they are. Most people are really receptive to any information I can give them about RA and want to help me in any way they can.

25. My favorite motto, scripture, quote that gets me through tough times is:  the serenity prayer – that I can change the things I can, accept those that I can’t and have the wisdom to know the difference.

26. When someone is diagnosed I’d like to tell them: that you shouldn’t suffer in silence. People in your life don’t know how to help you. They need you to help them understand what you need. Having this disease can feel very lonely, but you don’t have to be alone in it.

27. Something that has surprised me about living with an illness is: how strong I can be. I don’t always see it that way, but having a chronic illness means not being able to give up. You have to try all the time and make taking care of yourself a priority. And loving yourself is the best way you can show love to those who care about you.

28. The nicest thing someone did for me when I wasn’t feeling well was: I’m fortunate enough for people in my life to often do things when I don’t feel well, but my husband has done so many things for me. He tied my shoes when I couldn’t, he has cooked for me when I was tired and he has loved me when I felt unlovable. He has been an amazing gift in my life.

29. I’m involved with Invisible Illness Week because: it is important for people to consider the possibility that people who don’t look sick may not be healthy and it is even more important for those of us with these illnesses to talk about it so that we can spread awareness.

30. The fact that you read this list makes me feel: appreciative to know that people want to learn more about me and others who live with illness every day.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

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The Arthritis Foundation interviewed me to put together a press release for this Sunday’s Arthritis Walk. On Saturday, my local paper picked up the story.

The article does have one inaccuracy that I feel I need to mention when I show it to people. I had my hip surgeries when I went to graduate school, not undergrad so I was fortunate enough to not miss out on too much in college.

I’m glad my story could be used to get information out there about JRA. There was one fact in the article that I didn’t even know:

Juvenile arthritis affects 300,000 children, or one out of every 246 children, making it among the most prevalent chronic childhood diseases in the United States. There are more children with juvenile arthritis than children with diabetes, cystic fibrosis, muscular dystrophy and cerebral palsy combined, and yet most people are unaware that children can have arthritis.”

I was struck by the fact that there are more kids with this disease than the others mentioned put together. I have heard about these childhood diseases countless times in the media, and yet I can count on one hand the number of times I’ve heard JRA mentioned.

So despite feeling a bit nervous about putting myself out there, I’m really glad I did. If even a few people bother to read the article and learn something, it was entirely worth it.


Sometimes it is hard to feel feminine when you have RA. I listened to a girl at work talk about how she loves to wear high heeled shoes because they make her feel beautiful. All I could think of is how painful that would be. When I chose what I wear I pick whatever is most comfortable. When I get ready in the morning, I prioritize sleep over makeup and skin care products.

Now, I don’t believe you have to conform to a strict dress code or way of looking to be beautiful. I’m really talking about feeling beautiful. This has always been hard for me. It seems like every day a new nodule or joint change happens and I can’t help but feel unattractive at my worst of times.

I often wonder, how can I look at myself and see strength, not disfigurement? How do I feel sexy when I feel pain and exhaustion? How do I feel okay with my far less than perfect self? I find this to be one of my greatest struggles living with RA. The constant change of this disease requires a constant revising of my definition of self. It requires me to accept changes that I feel are the for the worse, not the better.

I think my work friend has the answer. Maybe high heeled shoes won’t work for me, but it is important to take care of myself and do things that make me feel attractive. There are many ways to feel womanly and I need to remember to make that a priority. I think sometimes because I am constantly dealing with day to day living, I forget I have other needs and sometimes it is important to focus on those other parts of me.

How is it that you feel beautiful? Does anyone have some secrets they’d like to share?


The people in my life always mean well when they try to give me advice on how to deal with my RA. But the more they do, the less I feel like they understand.

I don’t talk about it too much here, but I am a politics junkie. I watch political tv, read political blogs and try to get as much information about what is happening in the government as possible. One part of this addiction is watching the Daily Show with Jon Stewart. Honestly, sometimes it is the only way I can look at what is going on in our world and not cry.

A month ago, I got tickets for one of the shows  in October. My husband and I made plans to go. As I got more information about the show, I discovered that even though you get tickets you are not guaranteed entry – you must stand in line to get in. My friend who had been to a taping recently told me that she waited for hours in line. This is a problem for me. My feet do not like standing for long periods of time.

Considering this and the fact that I have been sick and exhausted lately, I’ve been thinking about not going. I  really wonder if the benefits of this trip would be overshadowed by how much pain I’d be in.

When I expressed these concerns to my husband, he suggested I look into special circumstances for people who are handicapped. My experience has been that these situations only apply to people who are in wheel chairs or have walking devices. Someone who looks normal, like me, is considered too healthy to utilize such options. And a part of me doesn’t want to go this route and then discover I don’t apply all over again. It just makes me even more frustrated.

Last night, we went out to dinner with my sister-in-law and her husband. My husband was talking about how I didn’t want to go.  My brother-in-law, trying to be helpful, told me that he thought I would regret it if I didn’t go. When I explained that the wait would be the issue, he suggested I listen to my music player.

As I shifted my feet from the pain that had developed from waiting 30 minutes for a table at the restaurant, I just felt like none of them got it. This is something I’ve wanted to do for a very long time. I wouldn’t be considering letting this opportunity pass me by, unless I thought it would turn out to be an unpleasant experience. It is hard enough to not be able to do all the things I want to, but to have someone, even unintentionally, make me feel like I’m not trying hard enough just adds to the pain and frustration of these decisions.

I know they all mean well. I know they all love me. But when they make statements like this, I just feel like they do not understand the severity of my disease and how hard it can be. And that, in and of it self, is disheartening.


MIA

20Aug09

I’ve been kind of off the radar recently because I’ve had a cold that just won’t quit. Last week it was pretty horrible and I stayed home from work for a day to recharge. It has progressively gotten better, but still over a week later is holding on. And since I’ve held my meds I’m getting achy. So not doing much else but resting. Not working out, not doing chores, not doing much at all.

I know I’ve written about guilt before, but this is one of those times where that inevitable monster comes creeping out of hiding. I start feeling guilty for all the things I’m not doing – not taking care of myself, not eating well, not keeping the apartment clean, not doing what I’m supposed to do.

So when I start with my “Not thoughts” I have tried to remind myself – you are doing things. You are resting, you are taking care of yourself, you are giving yourself a break.  It can be so difficult to change our thought patterns, to look at what we have instead of what we don’t have.  I try to be optimistic, but it isn’t my nature. I want to look  at what is possible, not impossible. And sometimes I just need a good jolt to get myself in that mode. Not doing things only matter if I stop them altogether. As long as I stay on track and get myself back in a routine once I am better, it will be fine. I think it is that danger I am most fearful of – letting myself fall out of my routine and letting my health decline.

So I guess it is time to have faith in myself and realize that feeling physically good is a stronger motivator than laziness.  And it won’t ruin everything to rest while you aren’t feeling well.

Here’s to hoping I shake this cold off  very soon!


For the first time in a long time, I’ve acomplished everything I had put on my list to do today. Working out, cleaning, cleaning some more, laundry, and good old fashioned me time. Often, when I get to the second cleaning item on my list, I am just tired out. It is possible that all this rest has helped me recharge or the exercise is finally helping me with my energy. Either way, it feels great.

It is interesting how just being able to do things on my own and not feel like I’ve completely spent all my energy is an achievement these days. I’m hoping that the more I take care of myself the less impressive this will seem.  But, when you’ve experienced losing things you take for granted, you learn to appreciate every little success. If you don’t, what else do you have?

The Arthritis Walk is fast approaching. One of my friends who is walking with us is going to bring her kids. I think it is great that they will be there to participate. I’ve always wanted to do this, but at the same time I feel a bit embarrassed. It feels strange asking people to be involved in this for me and putting my disease in the spotlight. I usually do my best to hide it. But the more I think about it, the more I think that this is exactly what I need to do. I need to stop hiding and put it out there, even to strangers, and remember that it is okay for people to do things for me. I don’t always have to the be the one doing for everyone else. I think when the day comes I will have some mixed feelings, but ultimately, I’m glad that I’m doing this.


This week is my summer vacation. As it has been termed this year,  it is a “staycation.” So far, it is just what I’ve needed. Plenty of rest and relaxation. Unfortunately, the more I rest the more I want to rest. Thankfully, tomorrow we have plans to get out of the house. I have done my best to make plans throughout the week, otherwise I think I would have spent the time off  in my pajamas.

But it gets me to thinking about how RA is so much about extremes. Extreme pain, extreme fatigue, extreme emotions. It sometimes feels like it is all or nothing. Either I’m having a wonderful day or a horrible day.

Finding middle ground. That apparently is a theme for me lately. Usually my theme is “you can’t have too much of a good thing.” I think I need to change it to “moderation is key.”

Here’s to trying!


I have been doing a pretty job at keeping active these last few months. I have been strength training and doing some sort of cardio at least three days a week.

But for some reason, this week, I am just spent. On Sunday, I just got distracted and put off lifting weights. On Monday and Tuesday I had no energy to do anything. It felt too hot to walk and when I got home I practically fell asleep. I’m not sure if I’m just ready for vacation, fighting off some sort of cold or what, but I can’t seem to snap out of it.

I’m hoping I’ll feel different when I get home tonight, although I’m pretty much expecting more of the same.  Maybe I need to relax and just give myself a break. So what if I take off a few days from exercise? Well, I get paranoid that a few days will turn into a few weeks and so on and so forth. That leads to me feeling much, much worse. I know I’ve talked about it before, but the balance is just so hard to find sometimes between rest and activity.

On a brighter note, my Arthritis Walk team has raised $430 so far. I also know of some pledges that are getting mailed in, so we are over half way to our $1000 goal. In the scheme of things, it isn’t much, but I guess every little bit helps. I have a hard time asking people for money, so I figure if I can push myself out of my comfort zone even a little bit to help, that is a step.


I watched the Sunday morning news shows like I do a lot of Sunday mornings – This Week, Meet the Press – and the big topic of course is Heath Care. Now I am kind of a politics addict. I watch political TV until it puts me in a rage and often read articles and blogs about politics. I blame the 2008 election for making me a junkie. I also am very liberal and know that my ideas are biased in this direction.

After watching this mornings debates, I feel the need to comment. Mostly because heath insurance is a basic necessity in my life, much like food and housing. My perspective comes from having a chronic illess and also working in mental health with a medicare population.  In my comments I am making one assumption – my experience with heath care is representative of the average person’s. I believe this is true because in most cases I have had average health insurance and my experience aligns with most other people’s stories I have heard.

The main argument I hear against a universal health care plan is the Republicans saying that they don’t want to put the government between the American people and their doctors and they want Americans to have a choice in terms of their health care.  This is the most crazy-making statement I have ever heard. To me, you can only think this if you are privileged enough to be able to afford choice in your health care and have good enough health insurance to not have to deal with that company.  If not, you are like me and have had to take your employee heath care  because no one else will cover your pre-existing condition. I once in my adult life had a health insurance that was not offered by an employer. I was fortunate enough to live in a state, Oregon, that had created a health plan for people who were rejected for health care due to preexisting conditions. I had moved to the state with my husband while he finished his education, and had yet to find a job so this was my only option. It was offered by a private insurance company and I often found my claims were denied because they billed my services wrong. I learned the lesson of heath  care advocacy at that point and that I needed to make sure that my insurance did their job right.  And this is not the only time I had to deal with my health insurance on a regular basis. I have always had HMOs. Granted, that has been my choice, but in every case I’ve dealt with the HMO plan covers my medical services more, which is necessary when you have regular doctor’s visits and expenses. So my health care has never involved just me and my doctor and I think it is disingenuous or completely disconnected from the average American to say otherwise.

The other thing that horrifies me is the Republicans suggesting that a $5000 voucher is the answer to help people afford health care. Recently, Rachel Maddow reported that the average family health care plan costs over $13,000. This is not a difference that can be explained by cost estimates. The only way this kind of voucher would be helpful is if you need minimal coverage, which many of us cannot live with. This same story also dicussed minimum wage increasing recently to $15,000. Is it me or do these figures not work? How can any family living on minimum wage afford heath care? Even if they had two people working, the costs don’t add up.

Finally, beyond my issues with the Republican arguments, my biggest reason for supporting this initiative is that it is our moral responsibility. I worked with many working poor families. I saw them dropped from medicare coverage for making too much money. I saw kids without heath care because their family couldn’t afford to pay for it. And this was a common occurrence, not a rarity. Families shouldn’t have to choose between rent and health care. Families shouldn’t be penalized for working and trying to support their families. For many of these minimum wage families, it would be financially better for them to not work at all. Is that really a system that works?

I just hope that people really stop to think when they hear this debate. Don’t let people scare you out of change. If you like your situation, the administration is working to make sure that is still an option. If you don’t, the goal is to give you more options. I know it is hard to trust our government. They haven’t always shown to be trustworthy. But doing nothing at all, that is a risk we all can’t afford to take.


Here in New England our summer has been….wet and humid. And that equals me feeling like crap. This week particularly, I have felt exhausted and sore. This morning was a pure down pour, so I finally gave up and drove to work instead of taking public transit. It was probably the best thing I could have done for my body. Instead of being tired out when I arrived at work, I was refreshed and ready for the day.

My doctor suggested I go up on my Methotrexate again when I had my last appointment. I’m starting to wonder if I should. Although, my exhaustion has felt more like I did when I had low vitamin D than anything. But I keep thinking that it can’t be that since I’m taking supplements now. Sometimes I think my health is a dart game. Throw one at a list of possible symptoms and causes and you are just as likely to figure it out as not.

For some reason I just feel more resistant to taking Methotrexate than anything else. I know that I should just go with whatever my doctor prescribes. Not being aggressive enough with meds is one of the reasons why I had to have hip replacements. But part of me just wants to be off of it. I know that it is best for me to be doing well before I go off meds to get pregnant, but I’m still stubborn. *sigh* When will I learn?

Lately, to deal with my fatigue, I have started to day dream about what it would be like to be independently wealthy and not have to work. Oh, how sweet that would be. Being able to use my limited energy for the things I want to do, instead of need to do. Or having enough energy to do the things I need to at home, instead of letting that all fall by the wayside. A girl can dream, can’t she?

This leads my mind to thinking about what will happen as I age, something that I try not to think too much about. If I struggle with work now, when I am thirty, what will happen when I am fifty or sixty? I know people find it very difficult to be categorized as disabled with RA. All these thoughts make me start to worry about what the future holds. But you can’t do that when you have RA. You can’t live in the future or in the past. The only way to really live with RA is to live in the present. And man, that is so hard for me to do.