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3 Ways to Cope When Your Health Becomes a Barrier to Your Favorite Hobby

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I’m only a stone’s throw away from the operating room to have my right ankle fused because of chronic osteoarthritis. I’m so close, I can see my surgeon’s face as he waits for me inside. He’s wrapped up in his scrubs along with the anesthesiologist and nurses.

Whether the ankle fusion happens next year or three years from now, that’s unknown. The only thing that is known is that it’s going to happen.

Since the when is unknown, I feel a greater sense of urgency to cross off a few items from my bucket list while my ankle is still healthy enough. One of those items is taking my dream hiking trip on the High Sierra Trail, which I’m scheduled to leave for later this week.

After this hike is over, I’ll still take short weekend trips, but those will only require a little walking, nothing like a 70-mile, 10-day hike through the Sierras. This is it. This is the one.

While visiting my doctor to discuss what this hike would mean for the health of my ankle, we both felt that it is not the best idea. We talked about the chances of feeling discomfort during and especially after the hike as well as damaging the ankle even more. While I was able to get a cortisone shot to help with any discomfort during the hike, it’s only temporary. What’ll happen after is more of the unknown.

I’ve been fortunate enough to remain pretty active for a long time. But now my osteoarthritis is dictating what I can and cannot do physically. When trying to manage chronic OA at the age of 38, it’s important that I know my limits and have realistic goals for my activity levels. I’ve finally come to the acceptance that it’s time to move on from hiking and find another activity to pursue.

When I return from my hike in mid-September, it’ll be time to find a new hobby. But I’ll be confident in my approach to find that hobby because of the way I’ve approached previous barriers created by my osteoarthritis. Below are three ways I’ve been able to approach those barriers:

1. Accept reality: Knowing that it’s time to move on helps make taking that first step that much easier in looking for something else.

2. Be proactive: For years I’ve been working hard to do what I can to remain healthy and be out ahead of my osteoarthritis limitations. I’ll be able to draw on that experience to help find out what’s next.

3. Keep an open mind: I don’t know what the experience will be like as I search for something else. But being open to new experiences will allow me to find the best fit for the next stage in managing my osteoarthritis.

There are a lot of unknowns about what’ll happen once the final hike is over, the health of my ankle being only one of them. But I’m not only looking forward to the taking this amazing trip, but for the adventure that will come after it as well.

Lead photo courtesy of Thinkstock Images

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Why I Sometimes Can’t Shake Hands

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The handshake has been around for a very, very long time. And it’s the customary thing to do when you meet people for the first time. The problem is, sometimes I can’t shake hands.

On days that my arthritis is acting up, you’ll notice my hands aren’t really doing anything. You won’t find me reading a book in bed. I won’t use the remote to fast forward through the commercials. And I’ll try to shoo the dogs away when they want to be petted.

Now if I have to go out somewhere that particular day, I’ll try to stay away from people so I don’t have to hug someone I know or shake hands with someone I don’t. Arthritis days can make someone very unsocial, just not on purpose.

The thing about arthritis is that the possibility of pain is always hiding under the surface just waiting to strike. And when it does, it’s hard not to give into it.

It’s not like my fibromyalgia pain. When that strikes, it forces me to be bedridden until it goes away. With arthritis, it’s a bit different. There are still dishes to be done, dinners to be made and laundry to fold. And in my case, I have an adult child with special needs who requires assistance throughout the day. That’s not something that I can just say, “No, I won’t do that today.” So how do I go about my day when the arthritis in my fingers is so bad that I feel like I want to cut them off?

It’s usually a good day to enjoy things like frozen pizza. It’s easy to cook for a family and doesn’t require any special preparation. Or I’ll microwave a batch of precooked chicken wings.

As for the dogs, instead of scratching them on the head, I’ll just pat them. That requires no finger joint movement. As for the laundry, well, that can simply wait. And that goes for all of the household chores. They’ll be taken care of once my fingers allow me to do so. Fortunately, for me, my arthritis pain usually only last for a day or two. I know that others, like my friend, Sonya, can’t say that. Theirs is an everyday challenge.

It also helps that I have an understanding spouse who is willing to pitch in and take over when I’m not able to. For that, I am very grateful.

Lead photo source: Thinkstock Images

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13 Tips for Going Back to School With Juvenile Arthritis

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Heading back to school with juvenile arthritis (JA) can be tricky on your joints. Follow this list from elementary to high school to make the most out of your school year!

1. Apply for a government disability code (IPP). This recognizes that you have a physical disability and allows you to use accommodations in the classroom.

2. Ask your physiotherapist to write a list of accommodations that you can distribute to teachers and gym instructor.

3. Ask for extra time on tests, computer use for in-class essays, and extensions on assignments when you are away for an appointment.

4. Ask for printed copies of notes or have power points emailed to you. Have your teachers prepare pre-packaged notes for infusion days! Don’t let your disease impact your grades.

5. Make sure to empty out your overflowing binder to reduce the weight you carry. Use two sets of textbooks (for at home and in your locker).

6. Use pencil grips!

7. Use a laptop, iPad and voice recognition software.

8. Back to school fashion doesn’t have to been a strain on your joints. Look for comfortable foot wear (Birkenstocks or Nike) and find a trendy backpack. Don’t hurt your joints by wearing flats or using a satchel.

9. Get a locker in a central location and ask for elevator access.

10. Circle multiple-choice answers instead of bubbling in a Scantron or ask about oral testing.

11. Take advantage of zipper pulls, velcro, easy-to-open containers/water bottles

12. Keep your teachers and gym teachers informed. Fatigue and sore joints can be misinterpreted. Don’t let your participation marks fall behind!

13. Modify gym activities. Participate in sports that you can do and take breaks!

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12 Tips for Students With Arthritis Entering Your First Year in College

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Your first year of college is only a month away! Don’t let arthritis hold you back from the degree you deserve. Follow these 12 tips to finish your school year with straight A’s!

1. 
Register with your college’s accommodation center. Benefits include extra time and breaks during exams.

2. Apply for physical disability scholarships, loans and grants for scribes and arthritis-friendly equipment like a lightweight laptop, an iPad and voice recognition software to record lectures.

3. Apply for a scribe. Not only will they take your notes in fast-paced lectures, but they can also provide you with notes if you miss a lecture for an appointment. 

4. Learn to type your notes. Color-coordinated notebooks look pretty, but they may put an unnecessary stress on your hands.

5. Apply for a handicap pass and parking pass. Ask for permission to park in multiple parking lots, so you can park close to each of your classes or so you can drive across campus instead of walking.

6. Meet with your professor to explain your disease. This will help them understand how they can further assist you. 

7. Get online textbooks. Use an iPad to view textbooks instead of carrying heavy textbooks.

8. Download the PowerPoint presentations on your iPad instead of copying out notes you can fill in the blanks. 

9. Leave enough time in your schedule to walk between classes.

10. Don’t book an 8 a.m. class if you experience fatigue and morning stiffness. Make sure you have flexibility set up in the schedule when you select classes. Start after 10 a.m., take evening classes and try to have a day off!

11. Don’t be afraid to take a reduced course load or spring courses. You can still graduate on time, and your body will thank you for it. Remember you will have to miss classes for appointments, and it’s better to take on an amount you can handle. 

12. Keep your joints moving by using your campus gym and sign up for cheap fitness classes. Don’t forget that yoga, biking and swimming are all arthritis-friendly activities at a reduced student rate! 

Lead photo source: Thinkstock Images

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What My Father Taught Me About the Value of Caregivers

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Eight years ago, my father passed away after a long battle with Alzheimer’s. As I sat by his bedside, my thoughts turned to all those moments in my life when he was my caregiver. More than just his role as the dutiful parent, he became my main caregiver when I developed juvenile rheumatoid arthritis at 13 years old.

My father was the one who drove me to and from doctors’ appointments, reminded me to take my medicines and even was my therapist. For two long years, my after-school activity consisted of sitting in a chair watching “General Hospital,” wearing a neck brace that was tied to a thick rope, and on the other side of the door was a bag filled with gallons of water. My father had to place me in “traction” every single day, although it was very difficult for him to see me in such pain. I remember begging him, “Not today, let me have a day off,” but he never gave in. He knew that although it hurt me, in the long run it would be beneficial for me.

As I sat there by his side those long days before he died, I thought of the important role of caregivers. Since arthritis is a disease of mobility, the role of the caregiver is essential. There are over 50 million Americans diagnosed with arthritis, and each has at least one caregiver. The role of the caregiver is important no matter what age we are diagnosed with arthritis. The role takes on various forms throughout the lifespan of a person with arthritis.

It is the parent of a child with arthritis who wakes up earlier than usual to prepare a warm bath, so their child can move his/her joints before heading off to school.

It is the parent who has to prepare a good breakfast because their child will need to take morning medicines. It is the strength of a parent who cries in the shower alone, but puts on a brave face in front of their child as they prepare their Enbrel injection.

It is the boyfriend/girlfriend of a person with arthritis who learns to hold their hands differently because crossing their fingers is way too painful.

It is the spouse of a person with arthritis who quietly helps his loved one dress, put on their shoes, and get ready to face the world every day, while no one else has any idea of what it may have taken to get them out the door.

It is the spouse who waits patiently after the surgical doors close, leaving them alone with their thoughts and prayers as their loved one undergoes yet another surgery.

It is the child of a person with arthritis who grows up all too soon by taking care of their parent, reversing the traditional caretaker roles. These children, who mature before their time, learn to take on a myriad of adult-type responsibilities.

I intimately know each of these caregiver roles because my husband and daughter have continued the legacy my father began. Throughout the years, my arthritis has destroyed both my hips, my right shoulder, and both jaws. Thus, I have had to undergo seven joint replacements. To have a part of your body removed and replaced by metal makes you feel less human and more robotic only if you allow it to do so. For though it is quite painful, it quickly puts life into perceptive.

After each surgery I felt as though I had been robbed of my abilities as a human being. I could not move without aid. When I began to walk, I could not simply get up and move. I remember giving my legs the command to move, but they stood as still as Roman pillars on an archaic building. With time, as my muscles came back to me, I began to move my legs, and soon I was walking ever so slowly again. Through the weeks of therapy, I progressed from a walker a cane to walking on my own. I felt as autonomous as a toddler taking her first steps.

With this newfound independence also came a great deal of inner wisdom. The little everyday movements became small victories as I acquired them. I began to realize what truly matters in life are the people around you, the support system that stays behind when the surgical doors close. Once they are reunited with you, they search for ways of helping you deal with your pain and inability to move. This support system, the caregivers, whether it is comprised of one or many, is the essence of recovery. I got up and walked across the room because my husband or daughter was on the other side, waiting to surround my body with their arms.

It was that one hug that made all the pain worth it. It was their mere presence day after day that made me realize that although I have one more piece of metal inside my body, I am still the same person with the same hopes and aspirations.

Although my father is gone, he left me with wonderful memories and a legacy to help others in need. This example of service to others is what lies at the core of the Arthritis Foundation’s mission statement. Let us never lose hope that one day arthritis will be conquered, but in the meantime, let us continue to fight the good fight and care for everyone around us.

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6 Things I Need 'Normal' People to Learn About My Chronic Illness

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I don’t know exactly how or why I developed a chronic illness, but I did.

Somehow I went from a college kid living my life to a 31-year-old woman with knee replacements now living the bionic life.

I have learned to accept my disease and how my life is. The fact of the matter is, I actually love my life.

At this point, I don’t have a problem with my disease.

It’s “normal,” or healthy, people who seem to have more of a problem with it than I do.

1. This is my normal.

I have a health situation that will always inhibit me from doing things like “normal.”

I will always question if I should Uber or walk because I’m not sure if my legs will cooperate.

I will always be conscious of my diet choices and alcohol consumption to ensure I don’t set off a flare.

I will always have to visit a doctor, participate in lifelong physical therapy, take meds or have IVs and always make conscious efforts to stay ahead of my disease.

However, I can’t constantly look at my condition as an obstacle.

To ensure that I am living my life as “normal” as possible, I simply need to make modifications to my lifestyle that best suits me and my disease.

2. Your health advice is (respectfully) BS.

Unless you are a healthcare professional with accurate information regarding my illness, or you are powerful healing shaman that can take away my disease with a simple touch (please email me if you can do this), you have no business offering any health advice.

I appreciate your eagerness to help, but respectfully, stop.

Any mainstream supplement, diet, treatment, prayer, affirmation or drug, I have already tried or considered.

A note to multi-level marketing (MLM) sales peeps: Most products you’re selling consist of fake nutrition laced with soy, sugar, and chemical bi-product. Just because you bought a “welcome kit” and watched some info videos doesn’t mean you know how to ease inflammation. In fact, I’m personally offended you think my struggle is a business opportunity.

I have very specific drug, diet, and lifestyle protocols implemented that are tailored to my genetics and disease, so that pill you saw at GNC with “joint support” doesn’t apply.

3. I’m not too young.

Autoimmune disease affects upwards of 50 million Americans.

It does not discriminate by age, race or gender.

An autoimmune disease is when your immune system can’t tell the difference between foreign invaders and it’s tissues. As a result, those that have autoimmune issues present different symptoms depending on their diagnosis.

In my case, I have arthritis in my joints. Arthritis is often labeled an “old people” disease; however, anyone at any time can get it.

4. Stop calling me out.

For the last 12 years, I have been battling pain and inflammation in my entire body. My knees are the biggest problem area. Over time, my knee joints developed deformities and as a result left me with a sickkkkk pimp walk (I kid…but I have a little limp even with knee replacements).

I can’t for the life of me understand how “normal” strangers over the course of 12 years, at least once a day, have come right up to me and asked, “Why do you walk that way?”

Thousands of times (not exaggerating), I have been approached with the question, “What’s the matter with you?” or “What happened?”

Seriously? I appreciate the concern, but it’s none of your f*ing business.

5. I’m not a flake.

I love spending time with my friends, drinking some whiskey and gorging on tacos just like anyone with interests outside of Netflix.

The problem is, I simply can’t sometimes.

Sometimes my disease forces me to stay home. It’s either I am in pain, or I am exhausted, and there’s not a damn thing I can do about it.

Trust me, I’d rather be out watching the Denver Broncos be SuperBowl champs, or catching the latest Leo movie. It is what it is.

It is what it is.

woman doing exercises for physical therapy in the pool
Mandy doing her pool therapy.

6. My disease is hard to explain.

I have an inflammatory condition that affects my joints, but WTF does that even mean?

The best way I can describe it is like this: Imagine you are wrapped from head to toe in a giant piece of cellophane wrap, burrito-style. The degree of tightness you are bound varies from day to day.

On some days, the cellophane is loose, so you are free to move.

On other days, it’s so tight that you can’t move at all, but that cellophane is always binding.

Over time, your body parts develop deformities because you are constantly tight.

Fighting the cello-phone all day long makes you super tired, and sometimes you’ll just want to lay in bed all day and stare into space. That’s what it’s like to have inflammatory arthritis.

I’m the cellophane-burrito-wrapped girl that walks kinda weird.

The only thing I can do is embrace my new normal and help other people who are struggling with their disease embrace theirs, too.

This is who I am…

… and I’m cool with it.

Are you?

This blog was originally published on Bliss and Health.

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