Tuesday, May 24, 2016

Letting in a Caregiver on Your Chronic Illness Journey

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.

Sunday, May 22, 2016

Spiritual Self-Care

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?

Saturday, May 21, 2016

Mental Clutter

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 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.

Tuesday, May 17, 2016

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

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!

Monday, May 16, 2016

Top 5 patient rules you should break

Despite working on leaving behind our paternalistic past, some of the things that are hardest to change in healthcare pertain to how patients are supposed to act.

I'm here to tell you as a fellow patient and health activist: It's okay to break these seemingly-unchanging rules.

1. Don't question.

There is an epidemic among patients, something that we have the power to attack and change - silence.

Many patients, yours truly occasionally included, struggle with the ability to speak up to someone who seems to be more educated on medical issues than ourselves.

We have to start remembering, though, that we are experts in our bodies and our illnesses. Even if you don't know the mechanisms behind what your illness entails, you know something that your physicians don't - how your illness truly affects your quality of life.

It's time that we start speaking up when we have a difference of opinion in the physician's office.

2. Remember that the physician knows much more than you.

In order to fight rule one, we have to start learning about the mechanisms, medications, and complications associated with our illnesses.

If you have the ability to, head to a library and pick up (legitimate) books on your illnesses. Go to the nearest medical school or contact a provider/professor there to ask about learning more. Get in touch with non-profit organizations to learn what resources and information they can offer to help you in your journey.

We have to become our own advocates in order to get the care we deserve.

3. Don't bring in outside information.

Many physicians are busy and may sneer at the idea of a patient bringing in materials for them to look over. Others won't look at information such as sleep or fitness trackers. 

Some even refuse to look at pictures or other visual documentation of an illness.

Frankly, that is a load of BS.

If the goal is to help a patient, physicians should be willing to look at this information. Do not hesitate to bring it in and request that they look over it - even if it is later in their day after you've left. Follow up via email or your Electronic Medical Record (EMR) portal.

Just remember that they may not take it well.

Without documentation of my rashes as a child, we may not have found out that I had SJIA instead of leukemia. This effort can literally save lives.

4. Be polite no matter what.

It's common in our society to ask how someone is and, when they ask you back, to respond in a polite manner something along the lines of "doing well, thanks."

This is something we have to unlearn when it comes to the medical world.

Should you be respectful? Absolutely. Polite responses such as this, though, will often lead to physicians not believing fully what you're describing.

Smiling apparently does, too, according to one of my former PCPs.

5. Keep non-medical or sensitive issues private.

It's a common thing to think that physicians have no interest in what your life outside of your medical issues is. 

The reality is that many physicians take that mindset.

However, it's important for physicians to know when things in your home and/or work life are changing. 

If you're having an issue sexually, for example, this could be a sign of heart disease or other important health issues. The stress of planning a wedding, moving, or trying to get pregnant can cause additional issues.

In order to treat us as whole people, physicians need to hear what our lives are fully like. Is that easy in a 10-minute appointment? Nope. But you have the right to get your questions addressed and answered.

What would you add to this list?

Thursday, May 12, 2016

Fibromyalgia Awareness Day

Today is Fibromyalgia Awareness Day. Yay?

If you're unsure what living with fibro is like, please check out this post defining the condition.

You can also learn more about Morgan Freeman's battle with fibro here.

Since it is Arthritis Awareness Month, I also encourage you to check out posts with that tag on Instagram, Facebook, and Twitter. Make sure to check out the tag SeeArthritis as well.

If you're looking to follow me in more places, make sure to check out the following:

Tuesday, May 10, 2016

Leaving My Job

As of May 27, I will be leaving my current job.

It's a bit of a bittersweet thing. I used to really enjoy my job and my ability to help these physicians to help their pediatric patients. I was given opportunities to speak with various higher-ups about patient engagement and MedX.

Lately, the environment has changed greatly and I've been left feeling very torn. 

I don't enjoy this job anymore and that, coupled with my never-ending fibromyalgia flare-up, was already making it hard to get up and get to work. Late night or early morning meetings didn't help the situation.

I've tried to stick it out for a while here, but it's becoming increasingly obvious that missing a day a week due to illness isn't making me very popular. There is a lot of frustration, for me and for others, at my absences lately.

I went from feeling very included to not having that anymore and it's rough, especially as I felt I was finally hitting a groove about three months ago.

C'est la vie, I suppose. I know I'm worth more than this, though.

I do not currently have another job lined up. 

Normally, this would scare me, but T's aunt left us some money and I will be able to take some time off to try to get this fibro under control. I'm hoping to work part-time after a few weeks or even launch Chronic Sex as an official business.

I will be attending a few interesting conferences in the next several months, including presenting on sex with chronic illnesses at a few.

If you know anyone looking for a workaholic trying to reform herself, give me a holler!

In the meantime, expect to see more posts in June here, at Chronic Sex, on Medium, and at my official site.

Wednesday, May 4, 2016

Ruminations on being parentless for two years

Today is my independence day.

It's the celebration of starting to heal my mind, body, and soul.

It started with saying goodbye to my mother.

Growing up in an abusive home was hard. There aren't words to share enough of it all.

Thanks, Giphy!
I did meet my dad before the wedding. We're all busy and don't talk anywhere near as much as we should.

I am still left feeling very much like an orphan. It's not been easy to handle. I have had moments of weakness where I want my mother around... and then I remember it's the idealized version of a mother in a movie or on a show and not my mother.

Thanks, Giphy!
Note: not Kyle's mom.

Cutting contact with my mother helped me learn a lot about who I am as a person. I had to go through what I did and didn't like all over again. 

The Dave Matthews Band? No longer a like. 
Harry Connick Jr? Still a like but no longer a love.

I've gone through this with food, media, clothing, and more.

It's exhausting. I just had finished the period of my life where I should have had that all done when I cut contact. I had to do it twice.

And it was exhausting.

Before cutting contact, I blocked mother and her beau on social media and made some accounts private for a while. Part of that certainly was struggling with my compassion.

The issue is that I was, for a long time, too compassionate to others without being compassionate to myself.

This was evident when examining what led to my flares and other issues.

Very uncool.

Now, though, I am secure in myself.

I don't need my family of origin to complete me. I simply need my family of choice, the family I've made with you reading and T's family and my sister's family and close friends.

If my mother were to try to guilt me now? I would only have one reaction:

Thanks, Giphy!

Tuesday, May 3, 2016

Review of H Factor Hydrogen Water

This is a sponsored post. I was provided the product in exchange for an honest review, and I have been compensated for my time through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by H Factor or Chronic Illness Bloggers.

In the FAQs on their website, H Factor lists many articles related to the potential benefits of this water. There is also more information here for the curious. 

Some of the benefits listed on their website are:

"Studies have shown hydrogen water may help achieve peak performance, recover faster, increase blood circulation, helps skin care, relieves allergies & reduce inflammation."

The package is natural aluminium and much better for the environment than plastic. It's still recyclable and such, too. I will say, though, that this was not easy to open with painful hands. It was also quite awkward to hold at times as I was worried that I would squeeze too hard and spill the water everywhere since the package is pretty malleable. 

The size of the package was not a good size for my swollen hands, either.

Each bottle comes with its own plastic straw which was interesting. It felt as though that could be made more environmentally friendly somehow. 

The recommendation is to drink these within 30 minutes of opening to get the maximum effect.

The taste of this water is off just enough that you know this is not tap water. The taste is similar in off-ness to carbonated water, though this is far less bubbly than that.

I felt as though I should add a disclaimer on here that I am awful at drinking water. I could see the potential for me to feel better drinking two of these a day since I don't drink much at all... But then, within a few minutes of drinking some of this, I actually started to get dizzy, gassy, and pretty nauseous.

Hours later, once I got home from work, I was fairly sick to my stomach. I spent a lot of time in the bathroom or feeling quite queasy. I ended up sleeping on the couch one night due to nausea.

Needless to say, I did not drink another one of these waters. I'm still, frankly, recovering from the first one!

I can certainly see the potential that these could help some of us. After all, many items do help a variety of people whether or not that may be obvious or intuitive at first glance. I do have concerns over how helpful this could be. After all, even Livestrong has its concerns.

This was far too harsh on my GI tract to have any benefits for me whatsoever.

If you would like, you can connect with H Factor on their siteFacebook, Twitter, Instagram, and YouTube

Monday, May 2, 2016

The #1 thing you have to do to be a 'good' patient

We often discuss the qualities we want to see in the perfect physician -  the compassionate one who comes in and just gets what you're going through.

What if we turned the tables?

What is the top quality that we need to be the best patients we can be?

Be present.

When I say 'be present' I don't mean that simply showing up will make you a great patient.

In my experiences with PTSD, I have had to learn to be present. I have to focus on the here and now in order to protect myself from the ifs, whens, and weres. 

When I say 'be present,' I mean to work on mindfulness, the practice that helps us to embrace the current moment.

Our physicians are busy. We are not their only patients. Depending on their practice and where it is located, they may be responsible for upwards of 2000 patients.

Their minds are often thinking through their to-do list for later, who they need to finish charts for while they work into the wee hours of the morning at home.

They may be thinking about the checklists we all create in our heads regarding diagnoses and other issues.

In order to get the best care from our physicians, sometimes we need to be here now.

We get busy, too. Perhaps we are juggling too much on our plates like our physicians do daily. 

That makes being present all the more important.

By being present and focused, we can ensure that we are actively engaged in conversations with our health care team.

If we are not, we may miss sharing important pieces of the diagnostic puzzle with our HCPs. They may miss asking questions that lead us there.

"But how, Kirsten, am I supposed to be focused when I have 8,225,953 things going on??"

Some people find making lists very helpful in the process of being present and focused on the task at hand. Others enjoy exploring mental and/or physical grounding techniques. There are other tips over on the resources page.

Meditation can help us to cultivate this presence and, more importantly almost, the ability to be kind to ourselves when we're not able to be as mindful and present as we like.

Do you practice mindfulness? Have you found it helps you with being present at appointments?