Change

Posted on by Grayson

Be honest with yourself about what you most want to change in your life and why you haven’t done this yet. Then identify one thing you can do to work toward this today, and do it.

How have you been protecting yourself by lying to yourself? How has lying to yourself in this way actually hurt you?

What would your ninety-year-old self tell your current self about making a change, starting now?

What did you learn about yourself, and what did you do to begin creating change?

This is definitely a fitting question for someone at the beginning of a big journey.
I am nervous as fuck, but I also know that I’ve let that stop me in the past from doing things that I would have enjoyed and excelled at.
That’s why I’m taking this leap now.
After September, we’ll see if Chronic Sex goes anywhere further than jut a chat and podcast. Even if it was only that and it brought in no money, it would be worth this time off to develop it and to focus on my health.
This week, I aim to finish up my business plan and work on securing some more guest posts for the CS site. I’ll also work on getting the podcast in motion – if you’d like to help, check out our Patreon page.
By taking this leap, I know that I will have little regrets about this growing older.
I’m just really excited to fully dive in.

 

Westward, ho!

Posted on by Grayson

This morning we started a fun trip – driving from Wisconsin to California!
T, ever the joker, put ‘wagon caulk’ on the list of things to bring as well as clothes fit to ford a river. My Oregon trail past will never disappear.
Via Playbuzz
I’m really excited because we get to spend time with my sister and her cuties, Sammy and Missa Mae. It’s amazing how much they’ve grown since September and I’m anxious to see them.
JUST LOOK AT HOW BIG THEY ARE NOW Y’ALL
One of the awesome things we didn’t realize when we picked this weekend is that the Milwaukee Brewers are playing the San Francisco Giants – AKA we’re totally going to the game! The best part about that is honestly how excited Missa is to go to the game – and getting to watch T explain some baseball to her maybe.
Be still my auntie heart.
Anyhow, I will be much less responsive in the next week because I will be overwhelmed by driving, baseball, and soaking up cuddles from my niblings… and then resting after we’re back.

 

Healing CBD Hemp Lotion

Posted on by Grayson

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift from The Fay Farm, all opinions in this review remain my own and I was in no way influenced by the company itself or by Chronic Illness Bloggers.
I have to admit that I was skeptical about this product when I signed up to review it. If you read my writings often, I have a weird mix of beliefs and tend to shy away from natural things because, as I was growing up, that was all my family would do to help with my pain.
Turns out, multiple chronic pain issues don’t really respond to copper bracelets aside from turning wrists green… Anyway, it’s safe to say that I was looking for this to totally bomb.
But it surpassed anything I could have thought.
 
The first thing I used this for was actually an injury. I managed to cut open my fourth toe on my left foot to the point where I needed three stitches to hold it on and heal. My pinky toe on the same foot was also injured and broken… The fourth toe may be broken too, but since there is little that can be done for a toe, I didn’t ask for an x-ray.
I was told, after this accident, to make sure that I kept the area moist and clean. The day after, I began using this healing CBD lotion on the area to help with moisture and the whole clean thing.
It greatly reduced the pain that I was having, both from the injury itself and from stepping incorrectly with stitches.
There was even a point in the next week where I drove home during my lunch time after a meeting specifically to apply this lotion to my foot. Within a week, I was able to remove my stitches. The lotion continues to help the scar tissue and skin in the area improve.
In the meantime, the horrible dry skin that I have on my heels has greatly reduced. I am no longer catching skin on blankets, but have smooth feet! And that is still the case without having used the lotion for two days.
It has helped immensely with the pain from my fibromyalgia as well, whether this is in my hands or – the worse area right now – my neck.
The other night, I had a bout of painsomnia that was the most intense I’ve faced in a while. I ended up having to take a large amount of medication in addition to getting a back rub and applying this lotion to my neck and tailbone area.
It finally helped to break the painsomnia cycle.
If this lotion can help solve my icky, scratchy feet in addition to helping me heal from an injury and deal with my fibro pain in the midst of my biggest fibro flare in years?
I’m sold.
The CBD products from The Fay Farm are kind of badass. You can snag Healing Hemp in 2 oz or 8 oz.
Because I loved this product so much, I will be reviewing their Serenity CBD lotion coming soon, so stay tuned!
To learn more about The Fay Farms’ CBD products, please read this post from Julie Ryan at Counting My Spoons. You can also visit Project CBD’s Beginner’s Guide.

 

Honesty

Posted on by Grayson

Be honest with yourself about how you feel right now and embrace the feeling, without trying to make it go away. After a short while, reflect on what this feeling is trying to teach you, and if possible, act on what you’ve learned.

Try to peel back the layers of your emotions. There may be loneliness underneath anger, or there may be a feeling of inadequacy underneath jealousy.

Do you find it difficult to identify what you’re really feeling? If so, why do you think that is?

Do you allow yourself to fully feel your emotions, or do you usually try to make them go away as quickly as possible? If you chose the latter, why do you think you do this, and how does this negatively affect you?

It has been over a week since I left my job. I am struggling.
As I consider why I’m struggling, it has to do with a few things. The biggest is that I realize that I’ve been overdoing it for far too long.
Over the weekend, I had the pleasure of spending time with some of my old classmates at my alma mater with my favorite professors and discussing a religious studies book we’d picked to read together. This is the fifth time they’ve done this but the first time I could go due to other events, conferences, etc.
My friends and professors in the group are incredibly supportive. When I told them that I needed to create a schedule, I was thinking about needing to do so in order to get anything done. The three people I talked to instead all jumped to me needing one so that I didn’t overwork myself.
I haven’t seen most of these people in several years and yet they know me, they know how I am.
I have loved doing so much while I’ve had an opportunity to do so, but stepping back for a bit now is incredible – if only because I understand why I’ve been so exhausted for so long.
The other piece of this all is that I’m scared beyond measure.
Starting your own thing is tricky. This is a fairly spontaneous thing for a couple that dated for five years before an engagement to do! Sure, T is still working, but that means he has that much more pressure. We’re a team and we go through this as a team, you know?
I’m scared to fail. It would be sad not to try for just that, but I know that it’ll be difficult and hard work. I know that I will have to hustle a lot and do things that I’m not always good at in order to succeed.
Honestly? I’m almost more afraid to succeed.
Over the last week, I have been trying to push those feelings off because my immediate reaction is that feelings are bad – especially unhappy feelings.
I am Unikitty, after all.
I’m trying to not do this, though. I’m trying to feel my emotions so that I can process them now and not have to do a ton of therapy forever and ever. I love my therapist, but it’s hard to process after the fact all the time.
I’m scared because I’m not necessarily in control. I’m scared because the last time I wasn’t in control was when I lived with my abusive mother. Needless to say, that loss of control is one feeling I’m shit at dealing with.
Little K got through it, though. And she became a freaking badass.
I got this.

 

Workplace or Professional Self-Care

Posted on by Grayson

I was introduced to Self Care Catalysts when I attended ePharma back in March. I really had a great time speaking with the SCC team and am extremely happy to say that I will be participating in their Self Care Mvmt at the end of June in Toronto! 
 
O, Canada!
 
There is some great buzz out there already on Twitter using the tag #selfcaremvmt. The movement centers around how important it is to care for ourselves as patients with chronic illnesses and to celebrate the moments where we have been able to care for ourselves.
 
For the next few weeks, I’ll be posting on some self-care topics as a part of the lead up to this awesome event – and my foray into world travel. 
 
It is important to mention that I am being compensated for these blog posts and my involvement in the Self Care Mvmt. However, all thoughts below are my own and have not been influenced by said compensation.
 
Today’s topic is Workplace or Professional Self-Care.
You might be thinking: “What does this person who just left her job know about self-care at work?”
 
I know enough to know that I had to quit my job, y’all.
When I was working my previous job, I would spend around eight hours sitting in an office or in my car traveling to various sites for meetings. I spent all day at work, stuck writhing in pain because I was trying to save sick time for when I was worse off than that. When I was ‘worse off,’ I wound up needing multiple days off of work because I had pushed myself too hard.
It didn’t work well because I wasn’t practicing self-care and self-love the right way.
Earlier this year, I began dealing with a flare-up of my fibromyalgia that I frankly still am in. It has been four months. I was missing up to two days per bi-weekly pay period of work while trying to deal with this. I began to feel bad for being gone.
I was assured that it was okay since I had a Family and Medical Leave Act (FMLA) plan in place.
Once this had gone on for a certain time period, though, I began to get passive aggressive comments from physicians and other staff members about my absences.
It wasn’t enough that I was beating myself up about missing work and that I had an office mate who wanted me to fail all the time – now I was getting comments from people engaged in the care of people like myself!
It was scary!
In retrospect, a long time ago I should have sat down with my supervisor and the physician I worked most closely with and outline just how negative and harmful my office mate was. I should have complained about physician and other HCP behavior when it was negative and harmful, not just to me but to others.
Setting boundaries, though, was never something I was good at.
Now that I work for myself, though, this is changing.
I handle my breaks as I need them – emotional, mental, and physical. There is a reason why Netflix is on while I work!
I am engaging with others but setting limitations on what I can and cannot do.
I am working towards balancing my workload, though I’m still working on figuring out what that is for me right now.
The one thing I know for sure is that I have a boss that understands my illness better than anyone else in the universe. She’s always up for coffee, a quick run-around with the guinea pigs, or a nap. And I’m pretty excited to work for her – not just because she’s pretty okay, but also because she’s good at self-care when she’s allowed to be.

 

Psychological and Emotional Self-Care

Posted on by Grayson

I was introduced to Self Care Catalysts when I attended ePharma back in March. I really had a great time speaking with the SCC team and am extremely happy to say that I will be participating in their Self Care Mvmt at the end of June in Toronto! 
 
O, Canada!
 
There is some great buzz out there already on Twitter using the tag #selfcaremvmt. The movement centers around how important it is to care for ourselves as patients with chronic illnesses and to celebrate the moments where we have been able to care for ourselves.
 
For the next few weeks, I’ll be posting on some self-care topics as a part of the lead up to this awesome event – and my foray into world travel. 
 
It is important to mention that I am being compensated for these blog posts and my involvement in the Self Care Mvmt. However, all thoughts below are my own and have not been influenced by said compensation.
 
Today’s topic is Psychological and Emotional Self-Care.
Self-care is hard. When it comes to physical self-care, we can write it off as needing to do maintenance like oil changes so our bodies don’t fall apart.
Mental, psychological, and emotional self-care, however, cannot be handled so easily.
In order to take care of our minds and souls, we have to discover what helps us individually to a further extent than physical self-care. Fulfillment and enjoyment are at the root of this type of self-care.
Personally, there are many things that I find help with this type of self-care. Meditation and mindfulness help me immensely as I discussed with Rohan Gunatillake for his book This is Happening:
The app Rohan created, Buddhify, helps so much.
Therapy helps me as well. My therapist is AMAZING and she does such a great job of helping me to think through things, even if I don’t see her as often as I could.
As I touched on in my last post on spiritual self-care, being in nature and/or with loved ones truly helps me to re-energize.
Laughter is key as well. Without laughing at my hands when they don’t work or at myself when I slip and harm myself due to the lack of strength I once possessed… I would cry. I have learned that crying isn’t bad but merely a release of emotions. Still, I don’t enjoy it. It feels more harmful than helpful and isn’t conducive to my overall health.
I can track my moods through the Health Storylines app which helps me to practice self-care more earnestly.
One of the things that I enjoy from the Health Storylines app from Self Care Catalysts is how easy it can be to gather wisdom and thoughts for the day:
There are also portions of journaling (which I don’t necessarily utilize because I write here!) but is a great set-up:
It isn’t always easy to figure out what things to write, so these are great prompts for those new to journaling.
What are some ways that you practice self-care for the emotional and psychological parts of you?

 

Letting in a Caregiver on Your Chronic Illness Journey

Posted on by Grayson

I was a sophomore in college when I met my husband, T. I mentioned on our first date that I had “this arthritis thing” that made some days rough, but left it at that.
Us circa 2007
As time went on, T expressed more curiosity about my illness. I did not know much about it either, so I took to the Internet. First, I started blogging so that I could help T see what kinds of issues I was dealing with without talking directly to him. I didn’t have the best emotional support growing up so discussing a chronic illness was scary.
Describing my arthritis through writing removed some of the emotion from the situation. It also allowed T and me to develop ways to research medications and other issues on our own, but to then also come together to discuss once we both had an understanding of the issue at hand.
I refused to think of T as a caregiver for a long time. Even now, I hesitate. There can be such a negative connotation to that word. It implies some loss of dignity that doesn’t need to be there. Even if my husband occasionally has to help me walk to the bathroom or wash my hair, that doesn’t mean I am worth any less than him – and he’s not worth less than me. My husband has helped me understand diagnoses, find medications, take care of myself and accomplish my dreams. He takes on so much more at home when I cannot function as well. He pushes me to take care of myself and helps me get better care from my healthcare team.
If there is a better definition for a caregiver, I don’t know it.
 
Us at Crater Lake in 2010
 
Our relationship is unique in the fact that T has health issues of his own. We routinely find ourselves on a see-saw, switching from more balanced in health to ups and downs. The fact that we figured out how to talk about my health issues has helped us work on his as well.
It took a long time and a lot of work for both of us to get to the point where we started understanding my physical limits. For a long time, the biggest issue was that I wasn’t communicating my needs or pain to T. Without doing that, it made it hard to recall issues to bring up at medical appointments and more. I had to break the wall I had built initially so I wouldn’t scare him away, and it was the hardest thing I’ve ever had to do. There is a vulnerability inherent in sharing your intimate life with someone in such a way.
It’s easy to celebrate the successes with others, but harder to include them in the struggles.
The biggest turning point happened when I was still in college. We were driving somewhere and listening to 10,000 Maniacs. T searched for a song called Trouble Me and asked me to listen to it, saying that it reminded him of me:
Trouble, trouble me
Disturb me with all your cares and your worries
Trouble me
On the days when you feel spent
Why let your shoulders bend underneath this burden
When my back is sturdy and strong?
Trouble me 
I lost it and started crying. I was so used to having to cover up my illness issues to make other people feel comfortable.
Us at our wedding in August 2014
I know that I am incredibly fortunate to have such a supportive and helpful husband. T supports me wholly in managing my disease and treatments. He has a better memory than I do about my pain. We sit down before most rheumatologist appointments and discuss what has happened since my last communication with the clinic. We routinely look at medicine changes.
Heck, we do that with just about every healthcare provider I see. I always text him after appointments with the key points and then we discuss once we’re both at home. This helps me to remember the important things.
This post is especially timely as I’m wrapping up my last two weeks of working in my current position. I currently do not have another job lined up. I’m nervous, but also excited. See, leaving my job was T’s idea. I’ve been in a flare-up of my fibromyalgia and missing at least one day of work every two weeks if not every week. The strain of my illness activity along with immense stress at work has taken a toll on both my physical and mental health.
It was hurting me to keep pushing and it was hurting him to watch the cyclone of pain continuing to grow.
If I wasn’t sharing so much with him and allowing him to carry some of the weight of my illnesses, this would not have come up. By allowing him to share fully and wholly in my life, we’ve bettered ourselves as people and our relationship.
Another amazing wedding picture
We certainly laugh a lot more.
 
I have learned that it is okay to ask for help and be unable to do things instead of stubbornly trying and winding up in pain. 
I still choose how much information I share with him. Some days, it is because I know he is under stress or dealing with his own illness issues. Other days, it is because I don’t want to admit to myself how I am truly feeling. As long as we are both involved in what affects our quality of life as a couple, we do well.
This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.
 
Check out the Joint Decisions Facebook page to connect with others in the online RA community, and visit JointDecisions.com for RA resources and tools.

Spiritual Self-Care

Posted on by Grayson

I was introduced to Self Care Catalysts when I attended ePharma back in March. I really had a great time speaking with the SCC team and am extremely happy to say that I will be participating in their Self Care Mvmt at the end of June in Toronto! 
 
O, Canada!
 
There is some great buzz out there already on Twitter using the tag #selfcaremvmt. The movement centers around how important it is to care for ourselves as patients with chronic illnesses and to celebrate the moments where we have been able to care for ourselves.
 
For the next few weeks, I’ll be posting on some self-care topics as a part of the lead up to this awesome event – and my foray into world travel. 
 
It is important to mention that I am being compensated for these blog posts and my involvement in the Self Care Mvmt. However, all thoughts below are my own and have not been influenced by said compensation.
Today’s topic is spiritual self-care.
The word ‘spiritual’ often leads us to conjure up ideas of someone interested in religion, but it means so much more. I personally am not a religious person.
To me, spiritual self-care is something that allows me to recharge my batteries, help me unwind, and where I can simply exist. There are a few things that bring me to that place – most notably, exploring and spending time with loved ones.
Many of my loved ones aren’t physically close and, to be honest, being in nature in Wisconsin is really hit or miss.
I am leaving my job at the end of this week because it will allow me the ability to take better care of myself. This is something I will touch on in the next few weeks in more detail, but it plays a role in my spiritual self-care as well. Without being tied down to my current job, I will have more opportunity to be in the community and outside on the few good days we get here.
It also allows me the ability to travel much more, something I find my heart glows from.
It’s the thing I love most of all.
Traveling and exploring can take a physical toll if I am not careful. My multiple chronic illnesses, especially my systemic juvenile idiopathic arthritis and fibromyalgia, don’t do as well with certain types of travel. I really need a lot of time when flying somewhere to unwind after the trip or, sometimes, after a flight.
Traveling, for me, helps me to work more on staying in the moment, being present. I am no longer thinking about my history of abuse or the toll my illnesses may take. The only worries and anxieties I encounter are related to engaging in something fun.
I meditate, though not enough lately. I use an app called Buddhify, which I know I’ve discussed so much before, but always deserves mentioning. The Health Storylines app, from Self Care Catalysts, has great guided meditation as well as an area for social support.
Part of my goal with the time I am taking off of work will be to set a schedule for myself that includes physical and spiritual self-care methods so you’ll have to stay tuned to see how that goes!
I anticipate that this move will increase my quality of life, though.
What are some things that you do that could be considered spiritual self-care? Are there any apps that you utilize to help you do so?

 

Mental Clutter

Posted on by Grayson

Spend a little time clearing your mental clutter by writing down everything that’s on your mind so that you can release your worries and be more present in conversations today.

Do you feel that your worries have less of a grip on you now that you’ve taken some time to purge them in this way?

I am worried about leaving my job. I know that I am making the right choice, but I worry still.
Will I be able to stick to this schedule I have outlined in my mind that involves visiting the gym daily in order to regain my strength and to work on becoming healthier?
Will I be able to push myself enough to get Chronic Sex as a project and a potential non-profit off the ground?
At the very least, will I be able to take care of keeping our apartment clean and general housewife-type stuff?
Is this the beginning of the end of real work for me? When will I be bad enough off that I have to look at disability? How does this affect our potential future plans to get a house?
I worry about how this will impact my place of work. I try to act like I don’t, but I do. This is the main reason why I have had any second thoughts I have encountered. They’re very small, but still there.
Will I be able to pull myself away from taking a break to start all this? Will I really be able to take a break?
I doubt it, but I am going to try.
I’m burnt out. I’m tired. I’m ready to take the next step, to stop working for someone else and do work that is desperately needed.
Maybe it’ll help me figure out how to eat again. Even with this prednisone burst, I’m not hungry and that frankly scares me.
–
I do feel better after writing this out. I enjoy activities like this which allow us to really examine what we’re doing and worrying about.
I think it’s natural here for me to have concerns. After all, I’m looking at starting like an official organization? It’s a little daunting.

 

A Recap of My Time as the Dane County Walk to Cure Arthritis Adult Honoree

Posted on by Grayson

I had SO much fun back on the 7th at the Dane County Walk to Cure Arthritis! Our team Puck Arthritis raised over $1100 to help other patients like me living with arthritis.
I had such a great time being the adult honoree and working with Hana Johnson at the Arthritis Foundation.
She hung out with me at WORT on the 2nd despite having been in a car accident earlier in the day to help talk about how arthritis affects people here in Wisconsin. You can take a listen to our hour-long segment here:
Hana is pretty much the best.
By Saturday, I was more than ready to dress up all hockey-like, so…
T and I dressed up in hockey jerseys and made this amazing sign:
Neither of us has drawing skills, so we are really proud of that! T drew and I colored in.
I especially love his goalie:
It’s beautiful.
I had to give a speech and I did not write one beforehand… but it actually went pretty dang well!
Gia, the youth honoree, and her mom are to my right.
I got a snazzy sign to put up in my office.
My team had a blast.
My stick had names of people with arthritis and I will have to take closer photos to share later on.
My friend Jill and her husband Gary even drove down from Minnesota to come walk with us!
Our friend Janice brought along her son Jesse along with his wife Sharon and their baby boy.
Sharon, by the way, was the captain of the 2006 Wisconsin Badger’s Women’s Hockey NCAA Championship team… So, basically, it was like the best day ever.
Once we got home, I finally SLEPT! My fatigue from the previous two weeks finally resulted in a three-hour nap.
I so needed it.
Thank you to those of you who came out, donated, or helped spread the word. You rock!