The good kind of exhaustion

13Oct09

Well I just got back from a two day trip to New York City. I decided to go to the taping of the Daily Show after encouragement from friends. The results were…mixed. I asked the show if I could be accommodated, due to my difficulty with standing. They told me to ask for a chair when we arrived. However, the doors were not open at that time so I sat on the ground, along with many other people. Once the people from the show came out, about an hour later, I decided to just continue to sit on the ground since we were supposed to be let in shortly. Well, apparently since the Secretary of Homeland Security was the guest, the wait outside was longer than what I was told to expect by friends who had attended the show before.  So by the time I realized how long it would be, the line started moving. Anyway, I should have gotten a chair once I saw someone, but since that was my first time going through the whole experience, I thought the length of the wait was pretty much over.  I was uncomfortable for a while, but not in the same amount of pain I am usually in. This may be because I am in better shape than in past times like these. Considering I spent a lot of time on my feet the day before, it turned out fine. The show itself was okay, but I’m not sure it was worth the amount of wait time involved.

Despite that, I am really glad I took the trip. It showed me I can still do things like this. And we went to an incredibly fun musical, Rock of Ages, the night before.  I took the day off today to recuperate, which I’m also glad I did. I am still pretty sore today and we got back late last night so I was also extremely tired. I don’t think I could do anything like this without a ton of rest afterward.

I could really use a slow week now, but I have a friend visiting this weekend. The next weekend I’m traveling out of state to see my family. Sometimes I wish I knew how to say no. I don’t want to limit myself too much, but at the same time I want to be realistic about how going all the time impacts me.

Again, balance. Always a theme here.


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More thoughts about doctors

07Oct09

Just had my quarterly appointment with my Rheumatologist. This is my fourth or fifth appointment with her and although I feel much more comfortable with her, I’m just not satisfied.

My last Rheumatologist (and her nurse) could actually remember what we last spoke about, knew my history and had an actual relationship with me. Now maybe that is too much to expect after only seeing someone for a year. I know that they have a lot of patients so it is not easy to remember each of them.

But this week they were going to electronic records and it didn’t even seem like my most recent visit info was available to them. We talked about the same things we always talk about, I had to answer the same questions and my plan until my next visit was exactly the same. It was just irritating. I shouldn’t have to explain every visit that although my RA is minimally active, I have joint damage. Especially after having X-rays that she has already looked at! It was so frustrating. Maybe my last doctor was just amazing and I was spoiled.

Also, in the middle of the first part of my appointment I met a new physicians assistant who remarked that a person at age 25 is too young to get hip replacements (has he worked with RA patients for very long?) and then when he was having trouble figuring out how to put that in the system asked a tech guy to come in and disclosed my medical history to him. Now, I don’t really care about this, but it felt intrusive and it would have been nice if someone had warned me that he needed to disclose this, while I was sitting in the room, to get help. Also, because of this switch over, I had to wait for the doctor about an hour after I was brought in to the examining room. Needless to say, I was a bit cranky by the time I left the appointment.

*sigh*

On the plus side, my doctor said that my exercise routine sounds great and I found out I lost 5 lbs since my last visit. So at least there was that.


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Lacking inspiration

23Sep09

So I’ve been meaning to post for a while, but for some reason I haven’t wanted to blog. Work has been exceptionally busy. I work in a college and the students are back, so there has been lots of chaos. Things are always more exciting when students are here.

Our walk went really well. There were tons of people there, my friends and their children had fun and the day was beautiful. Our team just met our goal of raising $1000.  Overall I would count it as a major success.

I’ve started a new work out routine that is going fairly well. During the week I have been trying to bike for 20-30 minutes in the morning. I’m hoping that at some point I will be able to sustain biking in the morning and in the evening, in addition to my strength training three days a week.

Right now, I would say I’m strength training an average of two days a week and biking most mornings and some evenings. I think that is fairly good results, but I have had some pain at times that has required rest and others times I can no longer fight the exhaustion and needed a break. I know that I am more physically fit than I was last year at this time. I no longer feel tired and short of breath from my walk to and from public transit when I commute. Ultimately, I think I’m doing fairly well, but I wish I could be stronger.

My arthritis is fairly quiet with some morning stiffness, although I seem to have one day a week where I have one major joint that bothers me. I’ve mentioned having some hip pain recently to my husband. It isn’t chronic. It has happened twice in the last four months. But he told me the other day that any mention of hip pain worries him. I know that I have my own trauma response when I’m feeling pain, but I don’t always think of his reaction. I’m glad he can communicate that to me now. In the past he may have just withdrew or gotten frustrated at something else. I think this shows that our communication is getting better and we are healing. It is a day by day process. We both continue to try to adapt to a constantly changing disease.

So things are going fairly well, but I’m hoping I can increase my status from fair to good.


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30 Things About My Invisible Illness You May Not Know

09Sep09

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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A Step in the Right Direction

07Sep09

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.


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RA vs Femininity

06Sep09

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?


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They always mean well…

29Aug09

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.


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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!


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Man, this feels good

09Aug09

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.


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Rest is just what I needed

05Aug09

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!


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