Category: RA Blog Week

Some Hobbies Are Better Than Others #RABlogWeek

Posted on by Grayson
4 pics, left-right, top-bottom; 1) blue background with white text "Some Hobbies Are Better Than Others"; 2) a dark wine bottle on a wooden table; 3) three paintbrushes against an orange-pink watercolor background; 4) blue background with white text: "#RABLOGWEEK" and "Not Standing Still's Disease"
It’s RA Blog Week! Since I wanted to get the word out about CHIP funding issues, I’m writing about yesterday’s prompt today: Hobbies – Hobbies are healthy or maybe they are not? What is your hobby and how does it help you with your autoimmune conditions? 
One of the things I do regularly is go to Target. It’s not a glamorous hobby, but it’s something that keeps me moving. Whether I’m stopping in to get prescriptions or OTC lidocaine patches, it’s an easy way to get some walking in while protecting myself from the ridiculous weather we’ve had lately.
I usually go at least once a week. Sometimes I find fun things, especially now that it’s Halloween season.
selfie of me and T, only he has on a brown horse head and I have on a white unicorn head with rainbow hair and a golden horn; white text at middle bottom: "[screaming internally]"
I taught myself to play the uke. It was something I wanted to get into because I knew a bit about the guitar, but a guitar was big enough that it was hard to play. Playing songs from Nirvana, Beyonce, Carly Rae Jepsen, Rihanna, and more contemporary artists is something I enjoy. Some songs sound great and others… not so much.
me playing the ukulele; my ukulele is light blue and I am wearing jean shorts, a tank top, a jean jacket, and a hat; in front of me is a music stand and I am sitting in front of an apartment complex
The only real difficulty I’ve encountered is that there are some chords I just can’t play. They require weird contortions of my fingers that I just can’t do. I try to work around it, skipping those chords or using another nearby one.
The uke has been gathering a lot of dust. I keep telling myself that I need to get back into it. That said, I’ve been dealing with enough health stuff and work that I just haven’t gotten back to it yet.
Playing with the piggies, though, is something I always try to do.
4 photos from left-right, top-bottom; 1) Gus Gus - black guinea pig with white nose stripe - is laying on my chest and I am laying on my bed; my grey shirt, blue pillow, and brown headboard are visible; I'm making a duck lip face and he just looks adorably into the camera; 2) picture of Jaq - brown and white guinea pig - in his house; he has My Little Pony fleece, a dinosaur for snuggling, a pigloo, and various toys/snacks within view; he's looking at the camera; 3) Gus Gus leaning on his food bowl and looking at the camera; 4) an up-close photo - like, can't even see his nose - of Jaq; he is on my torso, which is clad in a burgundy shirt, and you can also see my legs; we are under a quilt that is grey, yellow, and white
I know spending time with essentially my children shouldn’t be a hobby, but ya know. Growing up in an abusive home means that I know you don’t always spend time with people you should, right? Even when I can barely move, I try to hold them or get on the floor and play with them. They help me so much.
Taking care of them really helps me. It gets me up and moving, regardless of what time of day it is. I have to make sure that they’re cared for, happy, and clean. They’re very snuggly, too, which helps me rest throughout the day.
It was actually a big deal last week when I had rash all over. I couldn’t hold the boys for very long because my rash is so painful and itchy. As soon as the rash had dissipated, Gussy kept begging for snuggles throughout the day.
It was very similar to how they react once I return from a trip.
Oddly enough, other patients have chided me for this – for playing on the floor. We all do things that may not be the absolute best for our joints, especially when it involves other beings we love. For me, playing on the floor with the piggies is a way that I stay myself and tell my arthritis to eff off.
I guess that’s why I see it as partially a hobby – it’s something that helps me to normalize my life. We all need those things, whether it’s walking around Target with a pumpkin spice latte, playing music, or spending time with loved ones.

 

Two is Better Than One #RABlogWeek

Posted on by Grayson
4 panel pic with an orange circle over where the corners meet with white text "two is better than one" - left-right, top-bottom: 1) pic of K and T on their wedding day dancing while K laughs; 2) blue background with white text "#RABlogWeek" 3) blue background with white text "Not Standing Still's Disease"; 4) first K+T kissing pic
It’s RA Blog Week! Today’s prompt is: Partners – Where would we be without our partners? They are often not just partners but caregivers. Tell your partners’ story.
This is a tricky post for me for some reason. I can’t quite grasp why. I mean, I’m always straightforward about how being sick can complicate relationships. Hell, I’m a sex educator. This shouldn’t be so hard!
I think part of it is that relationships are not only about love but about how we interact with each other around hard things. While I appreciate T handling my poor communication around pain or me hiding my pain, I try to not fawn over him. There’s ableism in over-appreciating our partners, as though we accept the outward notion that we aren’t fit for relationships.
T is a patient, too. As comfortable as I feel talking about my illnesses, I don’t know that it’s fair to talk about other people’s without really consulting them.
And T doesn’t always (read: ever) like to talk about himself.
Even after being together for ten years (as of last week – go us!), we’re still figuring out how to handle each other’s health. I’m sure part of it is that our illnesses are incredibly unpredictable. I mean, I don’t know what my 16+ diagnoses will do from day to day and struggle with that. Why wouldn’t T?
Sometimes we both have to put aside our patient needs to help each other. It’s not easy, especially for T. Depression and anxiety aren’t things we can place aside as easily as, say, some of my physical issues. That said, sometimes my physical needs are more immediate – like the time I fell, broke two toes, and had to get stitches in my foot. Poor T was asleep and I said I needed him from the bathroom, while I was trying to contain the bleeding on the bathroom floor.
I like to think that dealing with our health crud together, though, makes us stronger.
We always have another person to talk to who will understand (or at least try to) and give emotional support.
There’s always someone to go with you to urgent care.
When one of us is struggling, the other can make a boatload of mac n cheese or cake.
Most of all, even when we can’t help each other, we can hold each other and cry. As someone who grew up crying alone while hiding in closets or under beds, having someone to hold me while I cry is something I’ve never really had before.
Personalizing my arthritis as Arthur has really helped me realize the value in T and I viewing ourselves as a partnership fighting health crud. It becomes a lot less likely to wrongly find blame in each other over something not getting done if we see Arthur as the villain.

 

My Tips and Tricks #RABlogWeek

Posted on by Grayson
colorful tiled background with white text: "Kirsten's Tips and Tricks" - black text on a white rectangle: "#RABlogWeek" - white line - white text: "Not Standing Still's Disease"
It’s RA Blog Week! Today’s prompt: Tips and tricks – What are the ways you have learned to work around the physical difficulties and limitations of your autoimmune condition?
These are tips and tricks that I use to get through life with a laundry list of diagnoses. I think we’re up to 16 now? Oy. That said, they may not fit for every person, every situation, or every location. You should always check in with your provider(s) before making any big changes.
First and foremost, it’s important to establish care with providers who listen to you, learn about your illness(es), and do some of your own research. You can learn more about my health care mistakes here.
I’ve gotten to test many helper items through the Chronic Illness Bloggers network:

 

From a practical standpoint, it’s important to be real with yourself about what you are or aren’t capable of at the moment. As I write this, I want to be cleaning and doing laundry or dishes – but I’m flaring and I know this will cause more pain right now. I can pick one of those things, maybe, but certainly not all of them. That’s hard to admit, even to myself, but important to recognize. If I pushed myself too hard, I would be paying for it for days.
Find small things you can do to make your spaces, hobbies, and tasks more accessible. Look into getting a supportive floor mat for cooking and consider getting a stool if you make a lot of pasta like I do. Consider getting a shower chair and/or one of those shower heads that can also become a handle. It really helps on those days when showers get difficult.
Meditation using the Buddhify app has been incredibly helpful. They have tracks specific to stress, illness, and chronic pain. It’s a great way to remind ourselves that our pain isn’t always as big as the story we tell about it – including concerns about if/when it will end, etc – makes it feel.
I’ve also learned, after years of doing the opposite, that I absolutely must allow myself to feel feelings. If I don’t, it comes back to haunt me physically. My body does not cope well with stress at all. I do this in two ways. First, I allow myself to be a grumpy butt. This means I might subtweet on social media or respond more upset to something than I might’ve before. And that’s okay.
Tea and Empathy cards - unheard, frustrated, hurt, discouraged, relief, sh*tty, validated, resilient, vulnerable

Secondly, I really love using my pal Kate McCombs’ Tea and Empathy cards to map out my feels. Sometimes T and I use them together to talk about how we’re feeling. They can be used with several people or even by yourself. The layout above is a collection of my feelings about how my physical health was as of Saturday night. For example, I was relieved about starting pelvic floor and spine (and neck!) PT. However, I was also feeling pretty shitty because of flaring. These cards are incredibly wonderful – almost as much as Kate!

Speaking of, when I was in Oregon after spending time with Kate in December, I tried marijuana for the first time. I found it to be very effective for my pain and anxiety. I also slept incredibly well! I very much wish that it was legal everywhere, at least medically, because it’s a very effective medication. Please make sure that you check on laws in your area before using marijuana.
For my fibromyalgia, I have found engaging in pain play helps. Flogging, specifically, helps to kick my fibro’s ass incredibly quickly. Not everyone is interested in or understands kink and/or BDSM, and that’s fine. My rheumatologist and I believe that flogging – essentially using a whip with multiple strands on the end – somehow resets my brain’s pain processing. It’s the only thing that will completely kill my fibromyalgia – very specifically, my allodynia.
Make sure to join me in opposing the Cassidy-Graham plan this week. Click here to learn more.

 

My Mental Health Goes to Shit Sometimes #RABlogWeek2017

Posted on by Grayson
wooden background tinted darkly with white text: #RABlogWeek2017 - My Mental Health Goes to Shit Sometimes - Not Standing Still's Disease
It’s RA Blog Week! Today’s prompt is: Mental Health – How do you manage to maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions?
I’ve talked a lot about how my mental health is impacted by being chronically ill. It’s a process that we all go through as patients.
It’s one of the most difficult struggles we face.
My biggest struggle with mental health is completely linked with my physical health. I wind up pushing through and not asking for help I need. Obviously, part of that is being an abuse survivor, but a lot of it is because I’m incredibly independent (read: stubborn). I’ve always wanted to take care of things on my own because that was my childhood. When I cannot do things on my own, I usually just struggle through as best as I can or forgo whatever activity.
I get angry and shut down emotionally instead of communicating my frustrations. I know that sometimes, it’s because sharing how angry I am with my body will lead to crying – something I absolutely hate to do… mostly because of how I was raised.
Crying was showing weakness. It meant I wasn’t being strong or resilient or persevering. I know now that this is bullshit, but it’s a hard thing to change.
selfie of me with short hair; in the background are posters of the skeletal system and muscular system; I look tired/annoyed/run down and am wearing a hospital gown, though you only see a snippet of it on my right shoulder; there is a filter on this photo that makes it look distressed and discolored
The unpredictability of living with chronic illnesses is detrimental to my mental health as well. I can’t plan effectively when I don’t know how my body will react.
I was just in New York for a trip. I had tons of fun and spent time with some of my favorite rheummates. Even though I’ve started to buffer my trips to give myself time to recover, that doesn’t always do the trick. Sometimes I only need a day and other times I need a week – and there’s no real way to predict that, even when I get home.
It’s hard to know if I will be up for appointments like physical therapy, let alone to clean the guinea pigs’ house.
That’s really hard, especially being a planner.
It’s taken me nearly thirty years, but I’m starting to learn how to communicate my pain more effectively and ask for help. I’m sure it’ll be a continuous process until the day I die. Hell, what person is good at this without illness?
Make sure to join me in opposing the Cassidy-Graham plan this week. Click here to learn more.

 

Rheum for Depression #RABlog

Posted on by Grayson
This week, I’m blogging as a part of RA Blog Week. Today’s prompt: coping with depression.
I’m no stranger to talking about how mental health issues interact with my physical health issues. I’ve been very open in talking about my struggles with Post-Traumatic Stress as well. Most of what I’ve talked about, though, is concurrent with but not caused by my rheumatic fun.
Depression, though, is something that I struggle a lot with. It’s gotten a lot better as my physical health improves (and with my antidepressant) but it still lingers from time to time. Depression is also pretty common when you deal with any chronic illness. The isolation we often face as friends and family either leave our lives or share their disbelief about our illnesses increases our chances of depression.
With invisible illnesses, it’s easy to fall into depression. We have these friends and families who don’t believe us. We try to work jobs that won’t accommodate us as much as we need because we aren’t visibly sick. Dating? HA! Healthcare peeps are, often, less caring about some of the invisible illnesses, too.
Throw into the mix how unpredictable our invisible illnesses are and you’re in for a treat.
One day, I can walk a mile. The next, I’m hobbling twenty feet to the bathroom. The day after? I’m sleeping to catch up on the sleep my pain prevented me from getting.
Those things don’t always happen in that order or as mildly as I make it sound.
The truth is that my rheumatic diseases have led to me missing important events in the lives of family and friends. This alone is enough to throw me into dealing with a depressive episode, but then I throw in the potential networking or professional events I’ve missed and it just compounds the frustration I have with my own body.
That’s what it all comes down to, isn’t it? I frustrate myself and do so uncontrollably. I’m unpredictable and unreliable, and not for a lack of trying. My illnesses cause those I love and care about pain, too, whether that’s because of my inability to be consistent or how hurtful it can be to watch someone deal with pain knowing that you’re unable to take it away.
When my illnesses can trigger someone else’s depression? It just causes mine to get worse.
The beauty in all of this is that, by stopping the process of making our body the enemy, we can help to lessen the guilt of living with illness. By halting the viewpoint of our bodies as our enemies in our fight against illness and, instead, embracing what our bodies, minds, and souls need?
That is the epitome of self-care and self-love. That is exactly what we need more of.
But it’s a process – a continuous process. Once you start, stopping just gets you back into the self-deprecation mode we’ve all come to know so well.
Do me a favor. Now that you’ve read this, go do something for you. Eat something decadent, take some medication if it’s time, watch a silly YouTube video, or send Snapchats to your favorite people using silly filters.
 
Have you dealt with depression due to illness? What have you found to help you?

 

The Scoop on Biologics #RABlog

Posted on by Grayson
This week, I’m blogging as a part of RA Blog Week. Today’s subject is the biologic.
When I was first learning about the medications available to treat my Systemic Juvenile Arthritis in 2009 and early 2010, I was horribly frightened. I had been led to believe that all of these side effects were worse than my illnesses themselves and were nearly guaranteed to happen.
This is so far from true that it makes me angry to remember how my mother instilled this fear in me.
In doing my own research on the subject and talking to experts, both in the health care practitioner field and patients, I learned just how helpful biologics can truly be. Sure, there are side effects that can be scary and/or dangerous. Most often, though, the side effects are far less than the benefits you get from these medications.
Still, when I started Humira, I was sure I was going to turn into a hamster the next day. An irrational fear, I know, but a fear still. By the time I started Enbrel, a similar drug, that fear had dissipated. Things went incredibly well with Enbrel… and yet, my body built antibodies to it quickly, rendering it pretty much useless.
Antibody build-up is a very real issue with biologics because the medications aren’t being effective in your body anymore. Sometimes that means that side effects are more prevalent because the benefits go way down.
It can also happen if the drug you’re on isn’t one that actually effectively treats your disease, too. Anti-TNF biologics such as Humira & Enbrel are generally not effective for those of us dealing with SJIA or Still’s Disease as they target different forms of inflammation than are shown to be most active for us.
For that, interleukin (IL) medications are the most effective, such as Actemra, Ilaris, and Kineret. I’m currently on the latter and it has just about put my SJIA into remission. My rheumy and I aren’t 100% calling it that at this point, but I have had normal inflammation levels in my body for 13 months because of it.
It’s something that I’m not sure I remember ever experiencing in my entire life.
That doesn’t mean I don’t have hard SJIA days – I definitely do, but I’m able to manage them more effectively without having to resort to prednisone to get me by. I utilize topicals and additional NSAIDs and my tens unit to push me through.
I have to say, though, that my fibromyalgia has been the biggest problem since about March of this year. That isn’t as easy to deal with, but is also not treated by biologics.
So, hey, biologics can be scary. It’s true… but they can also change our lives beyond anything we could imagine. It’s worth the risk to get the potential payoff.
 
What has your experience been with biologics?

 

My Origin Story #RABlog

Posted on by Grayson
This week, I’ll be participating in RA Blog Week. Today’s prompt:
 
Tell us about your diagnosis, what were you thinking, feeling or when did you first know something was wrong?
I was so young when diagnosed with my Systemic Juvenile Arthritis (SJIA) that some of the fun details aren’t always things I remember.
I was five when I got sick. I remember feeling incredibly sick. I went from being happy and bubbly to tired and fatigued. I ached all the time. Sometimes it hurt to walk or to move my hands. I had rash all over and it itched something fierce. I could barely get any sleep and, when I did, it wasn’t restorative; I kept scratching my rash and trying to get relief in my aching joints.
All I knew was that something wasn’t right. I was still forming my ideas of normal and not-normal, but I figured that this wasn’t right.
Then came doctor appointment after doctor appointment… and misdiagnosis after misdiagnosis.
The last misdiagnosis was leukemia and I was given weeks to live shortly before my sixth birthday. I was incredibly ill.
Frankly, I think that I was going through Macrophage Activation Syndrome (MAS) as many with SJIA do during the initial disease onset phase. MAS can be deadly and, to be honest, I’m incredibly lucky to be alive.
Shortly after my sixth birthday, SJIA was found as the culprit. It was a relief to know I didn’t have leukemia BUT it was scary to have a rare disease that even my doctors didn’t know about.
Shortly thereafter, I was medically neglected by my mother and wound up not getting treatment, aside from over-the-counter Aleve, from ages 7 to 21.
I was 8ish here and sis was 4ish
At one point, I just assumed that all kids went through pain, that I was just weak and couldn’t handle it. After all, mother made a point of talking about how she went through similar as a child. Who knows if she was telling the truth in the end, as she’s a pathological liar, but it didn’t help how I processed things.
When I was diagnosed, the idea was that SJIA kiddos would be in a wheelchair by age eight. I was incredibly scared about it. I thought, because no one had talked to me in an adult way about it, that I was going to wake up on my eighth birthday and magically need a wheelchair. My legs would just stop working.
Thus began my lifelong battle with anxiety, too.
What’s your origin story?