Welcome to a day with a huge number on the pain scale.
Felt sick last night. Had to do Humira and that didn’t help.
Today, could barely walk in the morning and rocked my cane at work, which was not easy. Hands hurt like crazy. Thinking it’s fibro and will keep track. Now ankles are hurting. Right now, at an 8 on the pain scale.
Fucking sucks.
OMG YOU GUYS I’M SO EXCITED.
Okay, maybe that was a little much 😉
But seriously, super excited.
Laura over at Still’s Life had a brilliant idea. And I’m not using the word brilliant just because she’s from the UK and I love the way that word sounds in that accent. It is actually a bloody brilliant idea.
In her latest post, Laura spent time documenting her Still’s rash and what kinds of symptoms present systemically when her rash appears. She had the wonderful idea to create a kind of Still’s Community project. If you’ve been keeping track of your rash, or you’re interested in doing so for a bit to help out the community, please contact her! I, for one, will be monitoring my symptoms a little more closely and trying to capture pictures of my rash in order to help with the project.
Why?
When I was first diagnosed waaaay back in 1995ish, there was literally nothing online about Still’s Disease. Even now, there are some support groups and some of them have pictures, but you have to dig for them. In fact, I’ve actually noticed a lot of my pictures show up if I search images for SD. Go figure 🙂
But I digress…
Imagine a family who has an ill child and they’re desperately trying to find the answer. They go online and they find a ton of pictures, complete with lists symptoms and pains that present with the rash. Imagine a child not having to wait over 6 months for a diagnosis, but instead being diagnosed early on enough that medications can give him or her hope of remission. Imagine what we could do for others who go through this pain – how we could help stop some of that pain for others. Imagine you taking part in that, and how awesome you’ll feel when you know you’ve helped people like that.
So pleeeeaaasssse, please, please consider hooking up with Laura or myself on this project so that we can help raise awareness and understanding!
I have a habit of calling my disease “Arthur” and though I’m not sure how exactly it started, I know I’m not alone. Several of us use the same term to describe our life partner, the ever-asshole-ish RAD/AA.
Here are some of the least favorite things about Arthur:
Feel free to share your least favorite things about your boyfriend, Arthur!
Some of us even feel so strongly about our painful lover that we can’t even put it into words. I will say this though, if he existed, I would have gunned him down mafia-style YEARS ago.
Pain sucks. It really, really, REALLY sucks.
My back isn’t really feeling better, can you tell?
Anyway, I’ve had roughly 18 years experience trying to detach from pain. Sooo here are some of my favorite diversions when I feel like death! Or just what I like to do with some of my days!
Why?
Because it’s midnight and I have heartburn and am not sleeeepy!
Enjoy this horrendously long list!
I tried to come up with a snazzy title for this post, something about pain being the same and not making petty comments to other ill people. But I just couldn’t find the right one.
Lately, several groups that I’m a part of have begun to experience a rash of attacks on others from members of these groups. To be honest, it’s gotten me to a point of frustration where I was about to delete my blog, unjoin these groups, and quit volunteering for the organizations I work with.
I’m not kidding.
In the past week, I’ve had some people comment that others with RA shouldn’t have children because of how much of a burden we already are on our families and how in the world were we going to take care of kids? You might remember my super angry rant at the horrible insensitivity here.
Well, the latest thing in another group is that the community is super negative. The person making the comment was diagnosed at 13ish. I disagreed with her post initially, because everyone needs a place to vent and ask honest questions. That’s what that group is supposed to be, and what it is for me. And then…
This is my favorite part…
People began to berate her and say that she must not know what real pain was. Whatever, people hating more, but I let it go.
Until someone said she couldn’t possibly understand what everyone else is going through because she got diagnosed so young so she just need to shut her face.
Wait, WHAT?
Why the fuck does it matter when you’re diagnosed? You’re still dealing with horrible pain, with horrible drugs, and with terrible self-esteem problems.
If you have read my blog for a while, you might be thinking I’m a hypocrite.
In the past, I have said that, yes, I feel lucky for having been sick since such a young age (HA!). Sometimes it’s true that I don’t know what I’m missing, and I do feel lucky for that. I also believe that I’ve gotten ‘used’ – as much as anyone can – to a certain level of pain being the norm. That shouldn’t be reality, but it is for me.
By no means, though, does that mean that my suffering is any less real, any less painful in truth.
Who gets to decide whose live is worthy of ruining with pain the whole way through, or who to rob everything from by striking them with disease?
Certainly, I’m glad, no one in that damn group.
It just made me so mad. I wanted to hang up everything and give up. If the rest of the community can’t even accept the pains and horrors of being an ill child with these kinds of diseases, then how am I supposed to get the rest of the damn selfish world to listen?? It’s impossible.
And then something wonderful happened.
I got a message back from a parent of a young boy with Still’s. We’ve been talking back and forth for a few weeks, and her son is having a real rough go of things. He is so sick, and other people don’t understand him 🙁
And then I learned about another friend’s daughter and her recent health issues. She’s got an infection or something, they’re not sure, that antibiotics haven’t been touching. She can’t take her JRA meds right until this goes away. Not to mention, she feels so horrible 🙁
Just because some people who should understand what it’s like, who should be mortified that children are this sick, don’t get it doesn’t mean that others won’t. These kids make me want to fight when I’d rather give up. They’re truly amazing, and I feel so touched that they are a part of my life.
So I’d like to dedicate this post to Jordan and Zack, for fighting so hard in the face of adversity. You guys are heroes to me, without even knowing it. And you do it just by being you. You guys get gold stars in my book, pretty much for forever.
I know I’ve touched on here a couple of times about the fact that I am on a gluten free diet. My blood tests recently came back and I do not have celiac disease. However, everything on my body feels horrible after I have gluten – especially my hands and anywhere else my disease feels like hitting that day.
I started this back in September and October, and I feel as though the boyfriend and I have learned a lot about how to live GF. Well, he still has gluten, but not as much. Anyway, I felt like it was a good idea to share with y’all, mostly because I keep seeing questions from people on tips for GF living.
First, get a stand mixer. The bf’s mom got us a beautiful kitchen aid for Christmas and it has really helped our recipes turn out better – and saved our hands!
Second, learn how to make GF breads and pastries. This could be the best thing you’ve ever done. I missed eating pizza, cake, cookies, and everything. But now I just experiment with delicious GF versions. If you’d rather, Betty Crocker (I’ve found so far anyway) makes the best GF cake mix. Otherwise, there are a ton of mixes you can find if you look for them. This is true not only for cakes, but cookies, breads, and even (YES) cinnamon rolls.
Now, baking bread with GF flours is pretty easy. It’s getting the mixing right that’s tricky. Again, get a stand mixer. Also, it doesn’t mix together like ‘normal’ dough. It’s supposed to, instead, look more like spackle. The rules are a little different. Why?
Gluten acts as a bonding agent. It holds breads and things together. When you don’t have gluten, you have to use another bonding agent – usually xanthan gum. Because of this, the chemistry gets thrown off. So just watch yourself! And if you don’t get a recipe right the first time, please try again!
PLEASE READ LABELS!
Seriously. Things you expect to be gluten free might not be, mostly because of seasonings. Arthritis Ashley recently had some nuts that for some horrible reason had gluten in it. She was lucky and was able to not really eat the food, but sometimes that gets really tricky.
Also, sometimes gluten tends to hide. The FDA made it necessary to list wheat in the ingredients on things, but gluten isn’t just found in wheat – it’s also found in things like barley, rye, spelt, etc. Learn the other hidden ways gluten can pop into your diet by familiarizing yourself with the hidden sources of gluten in your foods. I have found this site helpful for that.
For example, I have a potato problem. I love fries, crisps, jojos, wedges, baked tatoes, tater tots – pretty much all things potato… except au gratin. Ew.
Anyway, you have to be really careful, because a lot of fries – which you expect to be not gluten-ful – do have seasonings and things that make them so. Again, please, please, please read labels!
Get rid of all your seasonings and condiments that have gluten in them, even if there are people who can handle gluten in the house. There are still some things in our apartment that have gluten in them, but it’s pretty much limited to when my boyfriend gets pizza from the not GF places or his regular bread.
Make friends with other people who ditch the gluten, whether it’s online or in person. That way you can swap recipes and experiment with foods as a team!
Speaking of, here are some of my favorite GF recipes:
Maple Cornmeal Pancakes – These are HEAVEN. I’m not even kidding you. It’s like a mouth-gasm. They’re SO filling that having sides isn’t even needed. Seriously, you need to make these, like yesterday.
Chocolate Chip Cookies – My mom makes killer CCC. They’ve always been the most delicious things I’ve ever tasted, in the fields of cookies. When I realized gluten was making me want to die, I immediately knew I was going to miss these cookies. Alton Brown sir, you are a saint!
Pizza Dough – Okay, Spelt has gluten, so don’t use spelt. But once you learn more about GF flours, you can modify this recipe. We usually use all purpose GF flours and such.
Mmmm lasagna. Enough said.
Cinnamon Bread – We’ve found that it works better if you put about half the topping in the mix right away, and then put the rest on the top about 10 minutes before it’s done.
Cornbread – Mmmm.
There are a ton more recipes out there, so start looking!
And here are a couple of my favorite GF brands.
Envirokidz – Not only it is Nature’s Path’s answer to GF, it’s geared towards kids so they have freaking adorable animals like koalas and lemurs. And they taste amazing. They have cereals and breakfast/snack bars.
Glutino – The entire company is gluten free. Bread crumbs. Yogurt covered pretzels. All purpose flour. Bread. Oh, and FREAKING FREEZER PIZZA. The feta is the best by the way.
Pamela’s Products – Sometimes you want delicious things like cookies but don’t want to have to put dough in the fridge for HOURS. So I reach for these awesome lil guys. Chunky chocolate chip is the best, especially with vanilla soy milk.
Lundberg – GF couscous, and now super awesome pasta. Mmmm.
Annie’s – Mac & Cheese and fruit snacks. Heaven!
Amy’s Kitchen – GF soups and chilis and all sorts of goodies.
Like I said, there are a TON of options available. Going GF isn’t as hard as it used to be. It doesn’t just mean eating veggies and fruits. You can enjoy normal foods, with a little twist.
If you have questions about going gluten free, or about the kinds of recipes and foods to try, please shoot me a message!
While Still’s Disease is very similar to rheumatoid arthritis, there is a lot that is different between the two diseases. As much as I hate to say it, Still’s patients experience more side effects as their disease is systemic and can affect so much more in the body.
I tend to do a horrible job of distinguishing between the two, and use the terms interchangeably. But they aren’t the same disease. The same treatments can be effective, but then again they may not.
Still’s is the least common type of JRA (if you consider it that). Less than 20% of JRA patients have Still’s. Many go undiagnosed. Still’s affect boys and girls equally, where JRA affects girls more than boys. Onset often occurs before age 10, usually after an illness like Strep Throat or Scarlet Fever, etc. I got it after Strep and MMR immunizations, as did my sister.
Still’s presents with a fever and a rash. Both usually get worse at night, improving in the day time. The rash can be present one second, and gone the next. It itches like a bitch, and it doesn’t care if you’re at work or out with your friends – it shows up where and when it wants to.
The joint pain can be more intense than ‘normal’ JRA – I’m not making this up. Unlike JRA, Still’s doesn’t usually present with positive ANA (antinuclear antibody) or RF (rheumatoid factor). Neither of those are positive for me.
ESR, or Erythocyte Sedimentation Rate, measures the swelling in the body. Usually, this number is very high. Right now, I’m at 25 mm/hr. The normal range is 0-20. But at onset, this can be VERY high, like 50 or more.
It’s also hard for the body to keep holding onto proteins. For example, I’ve been losing protein in my urine since before I was diagnosed.
This last time, my labs are came back pretty awesome. Aside from protein in my urine and a slightly elevated sed rate, everything else was within acceptable levels.
So, why am I still in so much pain? And why do I have swelling?
I just don’t know.
Back in December, I learned that you could do layaway at Sears but start your layaway online instead of having to be present in the store. You can then make payments online and pick up your items after 8 weeks. You could pay it off sooner if you wanted to, but most people I’ve dealt with in layaways don’t.
I’ve wanted a Wii for a long time, but I’m finally in a position where I have a little more disposable income to do fun things like that. Plus, it’s been tough for me lately to head off to the gym and not overdo it, so I thought that the Wii Fit Plus would really help me out.
I picked up the Wii yesterday, and I spent about an hour and a half today working out between Wii Fit Plus and Grand Slam Tennis.
It was AMAZING.
I felt good today, and that is pretty amazing too. Hopefully, this week will be easier to get through with work and not taking the MTX this weekend.
I had a doctor’s appointment today. Well, a nurse practitioner.
She was awesome.
I did labs, including peeing all over my hand in a cup, and an x ray of my lower back. I’m holding my MTX dose this week to see if the back pain and hand pain subsides. If there is something wrong with MTX and me, then I’ll move onto leflunomide. From what she says, it’s essentially MTX but less crazy.
That’s pretty good, because at this point I’m about ready to not work ever again with the pain I’ve been in the past few days. Yesterday was easily one of the worst days of my life. And I still worked. Because I called in the day before.
I already arranged to have Thursday and Friday off this week as well. Last night, I felt a break in the pain, and then things got a lot better, but I just want to take it easy here for a few days. I’m exhausted after working through that pain.
I’m just hoping for some answers on what’s going on here. It’s imperative that I get them, so that I know how to proceed at this point.
In other news, my celiac tests came back negative, so that’s good. And I’ve discovered Spotify, so my love of jazz is growing exponentially.
Mmm blues and jazz.
Warning: this is maybe going to come off as a rant. I had an encounter with someone (who I perceive to have a horribly negative view of herself and the rest of the autoimmune community) about having children.
Needless to say, I left the support group this person was posting in.
This person posted a question (if by question, you mean opinion phrased as a question) about how she didn’t understand how anyone with this disease and on these medications could even consider getting pregnant. She went on to say that we have no real evidence on how these medications affect fetuses…
And on top of all that, since RA is maybe genetic, how could we consider passing along those genes?
No, I’m not kidding.
Yes, I almost punched a panda in the face.
My panda is sad.
So, after reliving the bits of my childhood spent debating on whether or not I should have children, I casually commented that people stop their medications (DUH) when they’re looking to become pregnant, that they work with their doctors, and that the parents I know who deal with medical issues work together as a team – just like any ‘normal’ couple does – to raise their children.
I also mentioned that the post had offended me and that it really hurt me to think about people coming to that page for advice and help on a bad day to see a post essentially talking about us being horrible parents and worthless. At least, that’s how I felt after I read it. And from the wonderful parents I know with RA and other related diseases, that’s just horse crap.
Apparently, that was a very bad idea to share my thoughts.
A few comments later, I left the group. But not until I mentioned how I was glad that the children I know with these kinds of diseases aren’t a part of this group, and how glad I was that these children weren’t a part of the group and hopefully wouldn’t be able to see what had been said. After all, if it made me feel horrible about myself, what would they think?
Her response? Maybe they would learn something from reading it.
What?!
Children. Wait, no. ESPECIALLY children who deal with an illness full of so much pain and so much suffering should NOT EVER have to consider the the fact that they “should not” procreate because of how horrible their disease is, how incompetent they will be as parents, how their genes have given them no choice but to choose to not have children themselves.
I wish I was able to express how crazy pissed off I am right now. But I just can’t. I just can’t.
Related note: my chest and neck get red when I get mad. Cooooool.
If I have children, it will be because I feel like I can handle children. Yep, that means my disease too, but that is not the only deciding factor. I have good days and I have bad days. But I would expect my partner and I to make this decision together, and to go into it exactly like that – together.
Life is not about feeling like shit because your body does things you can’t control. It’s not about you being unable to do things. If there’s anything I’ve learned from the past 18 years, it’s that life is about finding ways to be happy. And if having a child makes you happy – if the thought of holding someone half you and half your partner – if that does it for you, then you have that baby. You’re going to go through the sacrifices of losing medications for a while and dealing with the physical repercussions afterwards.
You and your family goes through this, not random judgmental pity-party lady. And if that sacrifice doesn’t deter you from having children, you’re going to be one of the best damn parents ever.
And if anyone ever tells you different, you tell them to fuck off and talk to me, maybe not in that order.