Category: PFAM

PFAM: World Arthritis Day Edition

Posted on by Grayson

Happy World Arthritis Day (if that can be a happy thing)

Sadly, just like the last time I hosted PFAM, I barely got any entries. I am not quite sure why, but oh well I guess. It seems like a lot of people who used to participate in PFAM don’t anymore unless the topic REALLY moves them.

The sole post that I have to share today is from Kathy over at FibroDAZE. She has gone through many changes in the last few months, and as such feel like she is living in her very own soap opera. When new medical issues pop up, life can definitely feel that way. Thanks Kathy for being wonderful and participating in this edition of the PFAM!

Late last month, I posted about my own personal dietary changes and how I thought they were helping. My suspicions are all but confirmed. It is very difficult to cut out staples in diet, like dairy products and gluten-full breads and such, especially for me. My father’s side of my family is Italian and, while I did not know him growing up, my mom always encouraged me to embrace my Italian heritage. It is driving me crazy, not eating tons of breadsticks soaked in garlic butter and parm cheese… Or, likewise, one of my favorite things about Wisconsin is frozen custard. We didn’t have this on the west coast/northwest, and I fell in love.

At least the best part about it is that I don’t really crave those things that often anymore. One of the wonderful people who really encouraged me to look at alternate grains is a man I have barely interacted with, but who has shown me a lot about nutrition – Chef Brad. My boyfriend and I just think he is wonderful and he has helped the both of us handle trying to eat healthier.

When I have added in dairy or gluten, I can tell how horrible my body feels. After eating some gluten the other night, I felt as though I had a body hangover the next day. My finger joints were swollen, and my knees were horrible. I could not go to classes and I was lucky that I was able to go to training at my new job in the late afternoon/evening. Likewise, adding dairy to my diet just creates tummy troubles – the gurgles, the heartburn, upsetness, and even more fun.

While it will be hard to stick to, I know that this change is right for me. I have felt so much better between that and starting my new job. The three minutes of delicious breadstick eating is not worth the joint pain and stomach issues.

I’m just glad I can still eat potatoes 🙂

Am I Gluten and Dairy Intolerant?

Posted on by Grayson

I think so.

Since my wisdom tooth surgery, I have been being nicer to my body and getting more protein. Part of that involved paying more attention to my metabolism – which right now is kind of crazy slow. Lame. But I digress. In paying more attention to that, I noticed that certain things make me feel horrible – not just sick to my stomach horrible, but I noticed that my RA starts to flare up more after certain foods. I thought maybe it was junk food. So then I cut back on that again and felt a little better. But the healthier I eat, the more I notice other issues.

When I eat things with a lot of wheat, or really any bread, my asthma picks up. And then about 20-45 minutes later, I feel crazy sick to my stomach. So I stopped eating bread. And then I noticed eating cereal did the same thing. I love cheese, and noticed the same thing while eating some.

And it occurred to me that what I’ve heard from people for years about dairy and wheat agitating RA could be right. So I stopped eating those things as much and have noticed that my arthritis is calming down.

Gluten intolerance symptoms are here. I’m amazed at how many I experience, and even more amazed that listed on there is juvenile idiopathic arthritis. It’s just crazy. Lactose intolerance symptoms are here. I’ve always had rumbly tummy noises (to quote Pooh Bear), but never really knew why. Now it makes sense.

Supposedly, along with gluten intolerance comes an intolerance to fructose and sorbitol. Sorbitol I don’t really encounter, because it is mostly in gums and diet foods and such that I can’t have because of my allergy to phenylalanine. But frutctose I encounter a lot… because my worst vice is soda. I’ve always used caffeine to help control my pain, and I know that I shouldn’t for many reasons, but I do. Oops. I also noticed recently that soda tends to increase the pain that I feel in my hands. So that’s fun. I’m down to one soda a day (mostly) but have also noticed that I’m drinking alcohol more… which supposedly also helps RA be less intense. And I’m not an alcoholic looking for an excuse – there are studies! I promise!

So in the past few weeks, the boyfriend and I have begun eating at home more, incorporating more healthy grains and vegetables into our diet. We still eat out one or two days a week, but we save it for the weekends (or special occasions) and it’s only one meal a day. We are spending more money at the grocery store, but less money elsewhere, and that is also helpful. It’s not always easy to find foods without dairy or gluten, but I’m finding out the best places to look, and that’s a start. Whole Foods has a lot, but so does Woodmans, a local grocery store.

It’s fun to eat healthier, and I feel so much better lately. The only thing that will make it better is my upcoming job change. Standing on my feet for 8+ hours, the stress, and all the things I end up doing extra are not worth the pain that I then experience… especially since it seems as though my current employers could really care less about the accommodations that I need… which is really sad, but oh well I guess. I could be mean, and take it further, but since I’m leaving I won’t. I’ll just get excited about this being my last real week, save two more shifts the weekend after next.

PFAM: A Call for Submissions

Posted on by Grayson

Hey! I had so much fun last time, I was really excited to get in on hosting this edition of Patients For A Moment, or PFAM.

Recently I have gone through some interesting life changes. In late June/early July, the boyfriend and I moved in together. In August, I had oral surgery. And now here’s September, and not only am I beginning to eat healthier, but I’m also changing jobs in a few short weeks.

So with that in mind, here’s the topic for this edition of PFAM:

What changes have you made for the better this year, and have those decisions helped as you thought? If so, yay! If not, what do you wish was different about the outcomes?

Personally, all of my decisions have worked out well and I’m excited to see what happens with the upcoming changes I’m making. But we will see.

Email me your submissions by 11:59pm on Sunday, October 9th to walters4-at-wisc-dot-edu. Your email should include:

1. Your name
2. Your blog’s name
3. Your post’s title
4. Your post’s URL
5. Awesomeness

I’m excited to read about the changes you’ve made in your life!

La Vie Boheme

Posted on by Grayson

The latest Patients For A Moment (or PFAM) blog carnival topic focuses on music, which I absolutely love. Phylor has asked us to explore, essentially, the soundtrack to our illness. I find it funny timing that she would pick this topic. Here’s why.

Last Sunday, while amping myself up for my wisdom tooth surgery the following Tuesday, I did something that I’ve always wanted to do. I woke up late. I popped open a gigantic bottle of Arbor Mist Sangria, my favorite wine. And proceeded to drink… while watching the Blu-Ray DVD Rent: Filmed Live on Broadway. It is the filmed final performance of the one play that I can say changed my life.

When I was in high school, I was in an abusive relationship with this kid pretty much from my sophomore year until graduation, give or take a few break-ups in-between. My senior year of high school is when the bulk of the break-ups came, because I realized what a bad situation I was in and I knew I needed to get out. Up until then, I had a kind of ‘whatever’ mentality regarding things. I knew that people didn’t believe I had an illness, especially with the lack of doctor’s visits due to my family’s income. I figured that I had found the best I could get – which clearly I now know was so far off.

The biggest change my senior year of high school was that my best friend, my uncle Nathan, moved back to Eugene with his family. Having just gotten out of the army, they moved in with us. Nate has always been a huge help and encouragement to me. So when he and his wife introduced Rent to me while I was home sick for a few days, my eyes opened up to a lot of things. Each time I listen to or watch Rent, I take something new away from it. While I enjoy the movie, released in 2005, I will always love the music itself more. But watching the actual play, on Broadway, was sadly something that I wasn’t able to do. So when I saw this DVD last weekend at Barnes & Noble on clearance, I snatched it up quickly.

If you don’t know the basic story line of Rent, it’s about a group of friends dealing with disease, discrimination, relationship issues, poverty – life, essentially.

Here are just a few of my favorite songs and lyrics from Rent:

One Song Glory:

Find/the one song/before the virus takes hold/glory/like a sunset/one song/to redeem this empty life/time flies/and then no need to endure anymore/time dies

Life Support:

Look I find some of what you teach suspect/because I’m used to relying on intellect/but I try to open up to what I don’t know/because reason says I should’ve died/three years ago

Will I:

Will I lose my dignity?/Will someone care?/Will I wake tomorrow from this nightmare?

But my favorite song above all is I’ll Cover You. If I posted it, I’d just end up posting the whole thing. The lyrics are here and the song itself is here. The reprise is here and, no matter how many times I watch or listen to this play, I can usually hold back tears except for when Collins begins to sing. His relationship with Angel is so sweet and, spoiler alert, when Angel dies because of AIDS, it is the saddest thing.

But not all of the music from Rent is sad! Check out songs like La Vie Boheme and Out Tonight. Rent has something for just about everyone, and is truly a celebration of life – with all the good and bad included. That’s why I really think it is the soundtrack to my illness. I have good times, bad times, and horrible times as well. There are times when I want to go out and dance my butt off, and other times where I feel like no one is there for me and I’m all alone dealing with my disease.

Help! I need somebody

Posted on by Grayson

This next edition of the Patients For A Moment blog carnival is hosted by Possibilism, and the topic is all about help.

First, let’s get one thing clear. I hate having to ask for help. I am my own person, and very much into making things work on my own. But sometimes it’s an inevitable part of life, especially for those of us facing chronic illnesses.

Usually if I ask for help, it’s with little things that I just don’t feel like fighting – like opening jars and packages. I tend to avoid cooking as well, not just because my boyfriend is an awesome cook but also because of how difficult it can be to grip cookware and my tendency to drop things.

And even then, I’m mainly asking my boyfriend to help me out with things. Asking anyone else is absolutely out of the question.

Often, I feel like asking for help means I’m not good enough (or normal enough) to complete said task. And there’s no way I’m openly admitting that to some random person.

But I have to learn more how to cope with needing help. We’ll see how long that takes me to learn.

PFAM Time!

Posted on by Grayson

Well, I only got two submissions for this edition of the PFAM, but hey it’s better than zero!

I love Nessie’s blog, Lipstick, Perfume, And Too Many Pills. Her post, Keep Fit And Have Fun, is all about making exercise enjoyable. I’m pretty interested in investigating in her Netflix yoga find!

Carla, from Lupus and Humor (and The Singing Patient!), talks about the struggles she faced in her efforts to become ‘normal.’ I wish I had the tenacity to follow through like her!

We all understand how difficult it is to stay fit when dealing with pain. Along with the ‘normal’ excuses for not going, we get to endure crazy amounts of pain and swelling as well. I think the biggest keys to success are to only do what you feel comfortable doing, and to have a workout buddy who understands what you’re going through.

I am lucky enough to experience both (on occasion). The boyfriend and I usually go together, when my schedule allows it. Really my biggest problem is to keep my exercise down to what I know I can do. Often I will try to go running instead of just walking… which would be fine if my knees, ankles, and hips weren’t my worst joints. And then I end up wiped out the next day. But you live and learn. Hopefully, most of us learn more quickly than our bodies seem to want to do.

Hope you enjoyed this small edition of Patients For A Moment. Check out the PFAM blog for more dates and topics.

February 16th edition of Patients For A Moment

Posted on by Grayson

I’m reposting this so that it stays at the top of the page!

So I’m hosting the next edition of Patients For A Moment (PFAM). If you don’t know what that is, why don’t you click here and we’ll tell you all about it. Anyhow, I kind of get to choose my own topic and ask everyone to write about it. If you’re looking for a good example, check out the most recent post at It’s No More In My Head. So, here’s my prompt:

Fitness and chronic pain – what’ya gonna do?: Those of us with chronic pain conditions know all too well how bodies need exercise and activity. But what happens when you’re in pain? What challenges do you face in staying fit? What ways have you found to work around problems? Or, do you have a fun/interesting/crazy/horrible fitness story?

I’ll bet you do!

Soooo, if you’re interested in sharing, email me the following at kwhiggitywhiggitywhack@gmail.com:

  • Your name (as you want it to appear)
  • Your blog’s name
  • Your post’s title
  • Your post’s URL

Oh hey, and try to get your post to me by the 13th, eh? I mean, as long as you get it to me before the 16th, you’ll probably wind up in the post but please understand that if you send in a post at 11:59pm on the 15th, it might not end up in the carnival. The post of posts will go up on Wednesday, February 16th. Even if you’re not participating, come check it out!

Oh, I almost forgot. I’m going to try to not write again until the PFAM post is up, so that this post will stay at the top of the page. But I have a doctor’s appt on Monday, so that might throw things off a bit.

Happy writing!

PS: Yes, I know, my email is ridiculous/awesome/fantastic 🙂

Nice Things

Posted on by Grayson
Warning: I’m going to be super cheesy. Deal with it 🙂
I’m all about nice things – heck, I pretty much exude niceness (or try to, at least). The newest edition of PFAM is centered around niceness too – what is the nicest thing (or things) someone has done for you since you became ill?
Now, being someone who has been sick for over 80% of my life, I have several options.
I could talk about how grateful I am that my mom figured out my real diagnosis instead of believing the doctors and sending me off for chemo. That’s kind of a huge thing right? I think about every once in a while what would’ve happened had she not been such an advocate for me in the beginning… What would the chemo have done to an already frail and sickly six-year-old girl’s body?
I could talk about how grateful I am to my entire family, for putting up with how grumpy and frustrated I get – and for everything they do to help me, from rubbing my legs to tucking me in (more recently than you’d think) to babying me (especially my equally sick baby sister – go figure).
But I think that, to a certain degree, those kinds of things are expected from a family, especially if they also suffer from the same condition. They are supposed to be there and do whatever it takes to help you out. So maybe I should think about a newer addition to my life.
I often talk about my boyfriend on here – things we go and do together, conversations we have, etc. During the past (almost) three years, he’s done far too many nice things for me to keep track of. I think there are definitely a few that stand out though.
He’s always been someone that I can go to and rant about whatever is irking me – whether it’s inside or outside of my body.
He is very understanding and tries to make sure I’m okay, no matter what we’re out and about doing… which is important since I’m stubborn and often seem to refuse to believe that I am any different than anyone else.
He doesn’t let my RA limit him. If I’m too tired or hurting too much to go do something that he wanted us to do together, he’ll do it anyways… which might sound weird… until you realize that it limits the possibilities for him to feel limited by my condition and resent both it and myself in the future… which, I’ll be honest, is something that I worry about for anyone in my life, but especially a significant other.
Above everything else though, the nicest thing he’s ever done is to suggest that I start this blog. He wanted to know more about my RA, and I wanted to tell him more, but there was a level of awkwardness surrounding things. Now, the blog gives me a way to show him – and others – how this disease does and can affect me. It’s also helped me to learn more about my disease, my body, and myself in general. I’ve grown as a person and have become more of an activist for people with disabilities (more on that coming soon). I’ve also gotten to speak to a few people who have been helped in some way by my blog. It’s an amazing feeling to know that I’ve helped to contribute to their lives.
Basically, the boyfriend is one of the best things that has ever happened to me. I understand myself more and am more able to understand others – and help them understand RA. He also has renewed my faith in other people to understand my condition, and that it isn’t something that I should be shy about discussing with others. He’s there to support me, but also there to help me realize when I need to take it easy.
So then, Mr. Schultz, thank you for everything that you do for me. Even if I don’t say it often, I hope you know that I very much appreciate having you in my life and that I’m lucky to be a part of yours.
🙂

Persevering in the Face of Arthur

Posted on by Grayson

One of the most frustrating things about RA is having to deal with the sometimes-disability – sometimes I feel more like a normal person, and others I feel like a 120-year old lady. Although, this can also be a blessing, because that means that I can do more sometimes.

I often talk about how having the RA for basically my whole life probably gives me an advantage, because I don’t remember a life before it. It also means that I’ve missed out on some things that others with RA have gotten to do – gymnastics, sports, etc.
I’m really fortunate to have gotten to go on a vacation in May. We did a lot outside that I did not expect to be able to do. My arthritis cooperated for the most part. It did get bad towards the end there, but the worst day was when we were flying back home.
I know that I’ve talked about my vacation a little here and there, but it’s pretty amazing when you look at the things I did over those two weeks…
  • Sat in planes for like 5 hours on two separate days
  • Hiked a little over a mile into the forest over rocks to find a waterfall
  • Hiked up a butte
  • Toured a lighthouse, then hiked down from the lighthouse to the beach (in flip flops, nonetheless)
  • More hiking to waterfalls and Crater Lake
  • Walking around in the Oregon desert (yes, it does exist)
  • Climbed around in a lava field, hiked a lava butte, and toured a lava river cave

Oh, and did I mention we stayed one week with my uncle and his FIVE girls, age 8 and under?

Since then, I haven’t really done a lot of physical things – other than moving and helping other people move. But I’ve also been working 8 hour shifts at a job where my main thing is standing at a desk…
I’m really excited to be able to go on a mini-vacation next week at a water park. I’m not sure how much I’ll be able to do, but playing in the water will definitely be worth it.