Wednesday, May 4, 2016

Live Your Life Outside Your Blog: My Challenge

“Live Your Life Outside Your Blog: My Challenge.”
by Cathy Kramer

My first session at HealtheVoices16 was with Trevis Gleason, author and chef who also lives with MS and spoke on Advocacy Offline.  Gleason left those of us at HealtheVoices16 with a lot to think about, but for me, he also presented me with a challenge.  Gleason shared how his cane often leads a person to ask questions which in turn starts discussions. Those discussions create education/awareness for those outside our blogs and communities which in turn allows the education of chronic illness to grow. A bonus is that with awareness, more and more people are able to help one another. I love this idea, but honestly, sharing outside our community isn’t something that comes naturally for me which is why I now feel challenged to do it.

I am a private introverted person. I like mulling over my thoughts and feelings and then letting them go.  My blog is generally the mulling over phase.  But otherwise, I keep my personal issues to myself or a small handful of people.  Of course most people at work, including my past and current manager, are aware that I have rheumatoid arthritis (tough to hide when you are limping around), but I purposely keep a personal Facebook page and a Facebook blogger page so that I am able to live two separate lives.  It isn’t that I am ashamed of my disease, because I am not, but more that I don’t want it to be the focus of my life.  I already have to constantly remind myself that RA is not my main identity. It is a part of many things about me. Plus, depending on where my rheumatoid arthritis is that day, I sometimes feel vulnerable when people ask me about it. Knowing this about myself, my challenge is to find a balance that allows me to grow in all areas of my life, but to also share my experiences with rheumatoid arthritis outside of my blog so that others can also learn to share their experiences safely.

Recently Gleason’s wise words, “when we expose our condition, it starts conversations” became reality. I was walking back to my classroom the other morning when a colleague mentioned that she really enjoys my blog and has shared it with others who live with RA.  What??? So, while I do try to keep my two Facebook pages separate, I have shared a few things such as when I received Healthline’s Rheumatoid Arthritis Award, becoming part of the Joint Decisions team and the exciting things we have done there, and when I participated in HealthCentral’s Live Now Live Bold project.  The Joint Decision posts on my personal page were easy because the focus wasn’t directly on me, but our group as a whole. When I shared the Health Central piece, it was very intimate. I shared stories that were more difficult to relive than I thought they would be.  I really debated whether I wanted to share this story on my personal Facebook page, but upon completion of the project I felt extremely proud of all that I have accomplished over the years and nervously shared it. I was surprised to hear from Facebook friends I have known for years that they also have rheumatoid arthritis or have family members who are living with it.  Family members shared it and several people also commented they have RA which my family never knew.  It started the conversation. 

My life with RA is has been extremely tough at times, but it has also been wonderful at other times and one of my main goals on my blog has always been to share that there is more than pain and limitation to living with RA.  I need to start those conversations so more people are aware that it can both. I want people to see me doing fantastic things in my life but to also be aware that I struggle some days. I want people to know that it isn’t necessary for someone living with a chronic illness to have obvious marks of disease in order to have the disease.  A co-worker once said, “But your hands look fine.” I blew off the comment, but this would have been an ideal time to briefly and gently share more about life with rheumatoid arthritis because if I don’t share it, how can I expect a person to know? My challenge is be more open with my disease offline. I need to share not only so others know they aren’t alone but so they too can feel free to share their story. The more we share, the more we know we are not alone. For me, it might start with a few more posts about rheumatoid arthritis on my personal Facebook page or sharing with a co-worker that not everyone with RA has wonky hands.  I could even be really brave and show her my wonky elbows. From there, who knows?

To help me with this challenge, I am focusing on the theme of “live your life outside your blog” in honor of Arthritis Awareness Month. I have asked several people in our community to share their stories of living life outside their blog or community, so please look forward to those each week.  Along with reading Gleason’s new book, I am hoping to gain some insight from these bloggers into how I can bring better awareness to rheumatoid arthritis (RA) and other chronic illnesses.  


How do you share your disease offline?

*"Live your life outside your blog" theme is my interruption of the session given by Trevis Gleason at HealtheVoices16.

My travel expenses to HealtheVoices16 were paid for by Janssen.  All thoughts and opinions are my own.  



Tuesday, May 3, 2016

When Your Friend Goes Missing

One of the benefits of being a blogger is the friendships you develop over time. I don’t think most of us expect this when we first start blogging. Another thing you might not expect when you first start blogging or join a health community is how sad you will feel when a friend you have never met in person, never had the chance to hug, but feel like you have, goes missing. Your friendship has developed over Twitter, Facebook, long email chats, texts, and phone conversations for several years and when that friend is missing from your daily life, you feel lost. Do you allow them their privacy or text, email, social media the heck out of them until you know things are okay?  Do you wait it out or start thinking of any connection you can to this friend's "real" life?

I did a bit of both. When my good friend Lene from The Seated View became sick and shared on social media that she was being admitted to the hospital, I sent her a few text messages. I got a very short one back the first day or two she was in the hospital which let me know she had read my text.  But when I didn’t hear anything else for several days, I started panicking. The not knowing was making me crazy and I began the search for people in her "real" life. Luckily, I found the email of “The Boy”, as Lene likes to call her long time partner. Fortunately for me, he is a very caring person and emailed me back quickly with an update and continued to do so until she was good to go on her own. In the meantime, Lene's sister also posted on Facebook, which I know was very comforting for a lot of us.

Many of us in the blogger community are in the same situation. We have never met in person the people who have become our life long friends. What do we do when they go missing?  Should we have a contact list we give to those we become close with just in case?  What do we do?  Have you run into this same issue? The good news is that Lene is back home and on her way to recovery.  She now has my husband's email and phone number, just in case.   

Blogging is a way for many of us to work out what is happening to our bodies. We share with others but often get so much back in return.  Sometimes those we meet online become the most special people to us. Lene is that someone to me.  

Thursday, April 28, 2016

Raising a Family with Rheumatoid Arthritis


Raising a Family with Rheumatoid Arthritis
By: Cathy Kramer

In the next few months, my oldest child will turn 20 and my youngest, 18.  It's an exciting time with young adults in the house. I feel fortunate that my diagnosis of rheumatoid arthritis (RA) came after pregnancy, infancy and toddler-hood. However, at 6 and 8 years old, my children were given a quick lesson on what it's like to see Mom develop and figure out a chronic illness.


Many parents choose to hide their chronic illness from their children for as long as possible. In my case, my daughter, who has always been very in tune with me, figured it out around the same time I did.  She sat on my lap and saw the first signs that something was wrong—“Mommy, why are your fingers so big?”  Both kids noticed the struggles that quickly took over my body, and being the caring people they are, they wanted to help me in any way possible. For me, the decision to have an open discussion about what RA is and how it could affect my body was necessary.
  •  I explained in simple terms that my joints hurt, and they both needed to be careful with me, giving specific examples.
  •  I let them ask as many questions as they wanted, and I answered them as honestly as I could.
  • My children were old enough at my diagnosis to know the difference between how I felt before and how I was feeling at the time. I was asked if I was going to die—the worst question a mother can hear from a young child. I felt confident assuring them this was not something they should be concerned with.
  •  I shared that some days would be better than others, and I didn’t know for sure what was going to happen. But I told them that I would always be the best momma I could be. That was reassurance enough for them.

      Both kids were fairly young but needed to find ways to help me, and I needed to let them do that for me.  As a homeschooling family, my children were always with me.  My son was/is my protector. I could always find him next to me at the grocery store ready to help load groceries or at the end of a playgroup ready to grab the lunch bag from me.  I realized when he was old enough to stay home alone how seriously he took his job as my protector. When I told him he could stay home while I went to my rheumatologist appointment, he said, “Are you sure? I don’t want you to go alone if you might cry.”  My daughter, on the other hand, was/is my cheerleader.  At six years old, she developed a system of tracking how I was doing each day. We printed out a calendar for the refrigerator and each morning she would check with me to see how I felt.  She would use a variety of faces to represent my condition.  It helped her to know what I might be capable of doing that day. One day, she went to the calendar and was so excited because I had an entire week of happy faces. When I started seeing a naturopath to work on eating healthier, my daughter cheered me on when I ate well and helped me from not eating inflammatory foods when I was tempted. (She still keeps a watchful eye on my nutrition and food choices.) These were big responsibilities for her to take on as a child, but looking back, I don’t think there was any other way we could have dealt with my pain, the unstable feelings, and the fear that we all had. My children saw me in pain, and they felt better knowing they were helping in some way.

Parenthood and exhaustion go hand in hand. Add in homeschooling your kids until high school, teaching a class or two in the evenings and dealing with joints that don’t want to move – you will probably find yourself with a full-blown case of exhaustion.  But, like we all do, I made it work in the following ways:  
  • I planned naps into my day, especially days I worked in the evening. I was lucky that my kids always stayed close by while I slept. 
  • On days that a nap wasn’t possible, I planned quiet time into our day. The kids and I would lay in bed, snuggled up watching a TV show or reading a book together.   
  • I learned to ask for help from others.  This was hard at first, but with a little practice, it got easier. I asked my husband for more help around the house or to pick up groceries on his way home.  My sister even cleaned out my refrigerator when she was visiting from out of town. 

I have been very fortunate that my family has always been very close. My husband has always made the kids and me a priority. I remember many evenings when he would play with the kids so that I could sneak away to soak in the tub. On the weekends, he would offer to take the kids out so I could rest. My husband and kids have honored my need for alone time when I am experiencing a flare. They are there for me, but also respect that sometimes I need time to cry it out. 

In addition to helping my family find ways to help me, I’ve also learned how to care for myself in the following ways: 
  • I keep my schedule simple. 
  • I plan ahead for home and school so if a flare occurs, it doesn’t feel like the end of the world..
  • If I am flaring, I drop everything I can and focus on myself.
  • I remind myself that rheumatoid arthritis is like a thunderstorm.  When it is active, it is strong and scary, but the calm always comes.
  • I incorporate things I can look forward to into my day such as a chocolate bar, a quiet walk or a movie with the family.
  • I found a rheumatologist that I feel compatible with and don’t hesitate to tell her if I feel I need more attention. If I could go back and redo one thing from my RA journey, it would be to find a rheumatologist I was more compatible with from the beginning. Rheumatoid arthritis is not a disease to take lightly. The first years are lonely. You don’t understand the pain or the feelings of inadequacy that can come with the physical limitations. Until I found a rheumatologist I clicked with, I wasn’t a strong advocate for myself. I needed a support system outside of my family to discuss the tough job of being a mom with an autoimmune disease. Despite having a wonderful family, I often found myself alone in the shower hyperventilating. I wish I had shared the need to either see a therapist who specialized in chronic illness to discuss these feelings or asked if my rheumy knew of other patients I could talk to. Several years after my diagnosis, my naturopath set up a meeting between a newly diagnosed patient and myself. I remember feeling such relief in knowing I wasn’t crazy for having the feelings I had. I also would have asked for physical therapy early on. Once I hooked up with my current rheumatologist, she recommended it immediately.

It took a long time, but I now have more good days than bad.  My daughter mentioned one day that she sometimes forgets that I have RA. That’s an awesome feeling.  My pain and limitations are no longer the focus of our family life. While my daughter says she sometimes forgets, I believe that compassion for others became a part of both of my children’s personalities as they were growing up. While life would have been easier without a mom with RA, I feel that it has helped my children to look beyond what they see in a person to what else might be going on. Plus, they are both proud of me. They have mentioned many times how amazing I am. They have grown up watching their mother deal with a chronic illness. They saw that despite the pain and fear I often experienced, I lived up to the promise I made to them that I would always be the best momma I could be.  I lived up to that promise plus so much more. I made my kids proud of me as a person.  

Balancing RA and a family can be challenging, but you can do it.  You can make your children and yourself proud. Sometimes it doesn’t seem possible at the beginning, but trust in yourself, and you will get there. We each have a story to share that is uniquely our own while sharing the same disease.  Listen to your family when they say they want to help.  Choose a rheumatologist who listens to your needs.  Be an advocate for yourself at your appointments.  You deserve it!

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.



Friday, April 22, 2016

Raising a Family Facebook Chat#1


Tuesday, April 26th at 2PM, Joint Decisions and Mariah Leach of From This Point.Forward will be hosting a Facebook Chat. Raising a family with rheumatoid arthritis or any chronic illness is dear to my heart and something that needs much more discussion. Mariah is amazingly down to earth and has tons of great advise. Plus, in chats you can be the expert too.  Come share your advice or ask questions. It's a safe place to share.

Wednesday, April 20, 2016

HealtheVoices 2016


HealtheVoices2016 was AMAZING!!!  Walking among 90+ health advocates/patients, I was pretty much in awe the entire time. A lot of great things happened at HealtheVoices16 and as I started this post I realized I could write pages about it but instead have decided to share the most important takeaway I experienced from the weekend and give myself some time to reflect on all the other information I took in. With some reflection, I can share better in individual posts. Plus, posting regularly is actually something I learned I need to be better at doing.

Do you remember when you graduated from high school and either went to college or started working?  All the sudden it felt like the world grew.  You were exposed to people, places, and events that you never knew existed.  This is the feeling I had at HealtheVoices16.  In my eight years of blogging, I have made numerous connections, but all those connections have had rheumatoid arthritis.  Last weekend my world was opened up to 20+ health issues.  

With rheumatoid arthritis as a diagnosis, it is really easy to start believing you are a unique snowflake and your diagnosis alone is constantly dealing with changing health issues, insurance, and prescriptions.  Guess what?  It isn't. No matter what the health issue, we all deal with a multitude of feelings, frustrations, and life changes.

HealtheVoices16 allowed me to meet some of the nicest, most enthusiast people ever.  On Saturday night, we had small group dinners and I didn't know anyone in my group. I was super nervous. As we sat down, our illnesses and advocacy brought us together, but soon we learned we have so much more in common.  Cindy @MyelomaTeacher was a fifth grade teacher just like me.  Anna at DiabetesSisters lives 20 minutes away from me.  In a session, I learned that David at MS Challenge has a book coming out with exercises for all levels.  We can use that in the RA world too. I met Dave from ActiveMSers and Todd from Overcoming Psoriasis who both kept me laughing nonstop. Watch out for those two!  Todd shared a couple of psoriasis tips that I plan to use on my daughter's eczema. Howard from The Itch to Beat Psoriasis is another new friend that I had the privilege of sitting down and talking with. His calm personality is just what I needed after a loud meet and greet. I also got to hang out with two new friends with RA and Diabetes. Molly from And Then You're at Jax who I have been following on Twitter for a while and is a new member of Joint Decisions.  Yay!  Also, Rick from RADiabetes who is a go-getter. Connie from Life Beyond Hepatitis C lead a few of the group discussions I was in.  I wanted to take her enthusiasm home with me.  I was touched by Wendy at Candy Hearts Blog who "cries every single time".  That was the amazing thing about HealtheVoices16, you felt safe crying. I finally got to meet Kirsten from Not Standing Still's Disease & Chronic Sex (if you haven't joined #chronicsex on Twitter or Facebook, I recommend it.)  Kirsten is also new to Joint Decisions. Yay! There were so many other wonderful people that I hope to share with you in other blog posts and so many people I never had the chance to meet.    

HealtheVoices16 takeaway is that we are all in this together.  We are "Better Together".  We can stop feeling like we are alone and start working together as a health community to make better stories for us all.

We were well taken care of at HealtheVoices16 due to the wonderful Tonic Life Communication gals. A special thanks to Deirdre, Kimberly, and Rachel for all you personally did for me. Also, to Janssen for paying for my travel expenses, but mostly for having such an amazing team of people.

*Thoughts and opinions are all mine. :)

Wednesday, April 13, 2016

I'm BACK!

I find a certain satisfaction from mowing our lawn. My husband does not.  I experience that same feeling you get after you've deep cleaned the house. Plus, I like being outside. So, when my son became old enough that he lost interest in mowing, I took over a few years ago.

The first mow of the season is generally tough. My calves aren't used to pushing a machine uphill and since we don't have a self propelled lawn mower, it is a workout. Last season, I made it almost to the end of the season. But as the grass kept growing higher and higher, I had to admit the hip pain I was in was too much. I couldn't continue. My husband of course took over. It's hard to admit defeat.

Today though, I'm BACK!  I felt strong and pain free as I completed the first mow of the season!  As a bonus, it was warm enough for shorts. (Sorry, no pictures. Super white legs that need a mow themselves don't make for great photos). It feels amazing when you accomplish something that less than a year ago you had to give up on and let others do.


Monday, April 4, 2016

#BesidesMyDiagnosis

One of the many things I love about being part of two new groups, Chronic Illness Bloggers and #ChronicSex on Facebook and Twitter, is that I'm exposed to a variety of new bloggers. I love the idea of embracing our beauty outside of our illness presented by Ness of The Girl with the 5 Lads who writes about family life when chronically ill.  

I feel like my life is in transition. At 48, my meds work most of the time at preventing joint pain, but I believe that in combination with peri-menopause, they are preventing me from losing weight which is frustrating but I am working towards appreciating the new body. My kids are growing up and the need to control their every move is gone, although I still make unsuccessful attempts here and there. I'm not sure how long my job of 15 years is going to last due to state budgets issues. I just feel like I'm reestablishing myself and need to focus on what I love about myself which is why I was attracted to this linky. Enjoy and please share your own #besidesmydiagnosis on your blog or through Twitter.

1. #besidesmydiagnosis the three things about my appearance that I love in the mirror?
       My eyes, smile, and naturally graying hair.

2. #besidesmydiagnosis the things I have read most are?
       Kristin Hannah, politics, and educational materials for the pre-GED class I teach.

3. #besidesmydiagnosis my favourite comfort foods are?
       Pizza, chocolate, and wine.

4. #besidesmydiagnosis my favourite past times are?
       Hulu and Netflix, walks, family time.

5. #besidesmydiagnosis my biggest accomplishment since illness is?
       Raising two beautiful children.

6. #besidesmydiagnosis I feel my best quality is?
       Patience

7. #besidesmydiagnosis my motto/mantra to live by?
       The best thing that can happen to me is happening right now.

8. #besidesmydiagnosis I would love to travel to?
       I'm not really a traveler (anxiety with flying), but I love quiet vacations. - little time in the car but lots of time 
       in nature

9. #besidesmydiagnosis my guilty pleasure is?
       After my evening class ends, I sometimes stop for hamburger and fries and sit in the quiet car eating 
       them.   

10. #besidesmydiagnosis I have many dreams and ambitions such as?
       To one day be a grandma. To know that the job I do is contributing to a better world. To share my gifts while
        also embracing the unique gifts others have to share.  


Why these questions? (From Ness' site)
Many people never describe themselves as beautiful as they do not fit into societies/media stereotype of beautiful. This is rubbish, we are all beautiful so should learn to love ourself. (Question 1) We can find friends through our interests, passions so these may open debates and make people find kindred souls. (Questions 2,3,4) We often focus on negativities and fail to see what we have accomplished since illness and make us thing about our best qualities. (Question 5,6) You can tell a lot about a person by their mantra (Question 7) We all need to hold on to our dreams (Question 8, 10) This is just for fun and giggles (Question 9)


Friday, April 1, 2016

Making My Girl Proud

As a momma, my goal has always been for my children to see me as a whole person - someone who makes mistakes and can own up to them, a person who at times is weak and vulnerable and sometimes even falls apart. Rheumatoid arthritis has definitely given my children experience in all of these areas. They have witnessed me at my worst. As young children they helped me undress, they have been rudely awaken by our border collie to come help get mom out of the bathtub, held me while I cried after rheumatology appointments, and much more. But as a momma, I also want them to see me at my best, to see me pick up the pieces and move forward. To show that I am strong enough to handle whatever comes my way. I want my kids to know that I am forever learning and making myself better as a person. When I show them my strength and make them proud, it is the BEST feeling ever!

My daughter and I decided to take a short spring break vacation together, just the two of us. She has always wanted to see the Rocky Mountains, so we planned a trip to Colorado. We had several things we wanted to do during our short three days, but the main thing was to hike in the mountains. Unfortunately for us, Colorado had a blizzard two days before we arrived so the mountain was covered in deep snow. We didn't let that stop us.




Together we took in the beauty of Mother Nature. We stood and absorbed the absolute quiet, we watched a mouse run on top of the snow, we stopped to observe birds, and we even ran into two separate families from our hometown of Wichita, Kansas. It truly is a small world. I am going to be honest, the higher we hiked, the more difficult it was for me. My 17 year old was jogging up the inclines while I had to stop for frequent photos (catch my breath). But on this mountain I made my girl proud. She saw me keep going.  She saw me push my physical capabilities of trudging up snowy trails. On this path here she said,  "Mom, you are almost 50 and have RA. I hope I'm as active as you at your age."  This will forever be my favorite part of the trip.


The next day we went to Red Rocks Amphitheater. We enjoyed the sunshine and the views.

I am crazy about this girl.

Yep, we walked up and down these steps. 
Rheumatoid arthritis is forever an up and down journey. Some days we struggle and need the help of others. Other days, we prove to those around us and ourselves that we are strong. We may have an autoimmune disease, but we don't let it stop us from making those around us proud.
 

Thanks to Mariah at From This Point. Forward for some great recommendations for our visit to Colorado. Blogger friends are the best!


Saturday, March 26, 2016

AbbVie Rheumatology Scholarship

As my children reach college age, I know how important financial assistance can be when considering college.  Scholarship applications are exhausting!  Add in an autoimmune disease and sometimes it is just too much, which is why I'd like to share an exciting opportunity for anyone with RA, JIA, psoriatic arthritis (PsA) or ankylosing spondylitis (AS).  AbbVie Is offering $15,000 in scholarships to 15 people!  Application deadline is April 4 so hurry!  Here's additional information.  Good luck! 

AbbVie Rheumatology Scholarship Overview
·        The scholarship is available to students living with RA, JIA, PsA or AS, who are seeking an undergraduate or graduate degree from an accredited United States (U.S.) university/college or trade school, and who plan to enroll for the 2016-2017 school year. 
·        Fifteen Rheumatology Scholars will be selected. The award value will be $15,000 for each recipient.
·        Applicants will be judged based on academic excellence, community involvement, written response to an essay question and ability to serve as a positive role model for the rheumatology community. 
·        Key dates and deadlines include:
o   Applications are available on www.RheumScholarship.com
o   Applications must be submitted by April 4, 2016.
o   Winners will be notified by April 29, 2016.
·        More information on the AbbVie Rheumatology Scholarship, the application process and eligibility criteria can be found at www.RheumScholarship.com.

Tuesday, March 22, 2016

Pain is a Stimulant for An Introvert

Having an autoimmune disease like rheumatoid arthritis requires a person to constantly question what is going on in their life.  Well, more so if you are an introvert.  As an introvert, I have a constant conversation going on in my head about how I feel, why I feel the way I do that day, and whether or not there is something else I could be doing. I have grown to understand this about myself, but sometimes feel sad for those that care deeply for me because I know they don't quite get this about me.

When I took an Introvert or Extrovert quiz on Quiet Revolution, a website for introverts and those who want to better understand us, I obviously scored as an introvert.  One of the characteristics was "When you're in overly stimulating environments (too loud, too crowded, etc) you tend to feel overwhelmed." Pain is a stimulant for me, a noise in my head taking over my body and overwhelming me.  I find it easier to not share my challenging days with those close to me because I know I don't have room in my head to think about their caring thoughts.  It is just too much noise at the time trying to compete with the pain.  When the pain starts to dissipate, I find it easier to share because some of the noise is gone. Another reason I hesitate to share my pain at the time is that as an introvert I tend to absorb the feelings of others and to be a good listener.  So, while people want to be there for me, they almost always need to share their own experiences or struggles going on at the time. To me this is another stimulant that I don't have the energy for at the time. I know it hurts feelings when people find out after the fact that I was in a lot of pain, but when hurting, I only have the energy for one person: ME. I am not going to lie, it is an ongoing battle to shut people out of my life while I deal with my own reaction to the pain, but the better I understand my own needs, the easier it becomes.  And just so you know, I am never really alone during a flare. I always have that introvert part of my brain talking me through it.  Please be patient with me and know that I appreciate you being there for me when I am ready to share.