Journal Sentinel: When The Choice Is Health Or Hearth

For Michelle Grosskreuz, the choice came down to her home or her health.

The moving van comes next week.

She has lost her condominium in St. Francis to mortgage foreclosure, in part because of the rising cost of the medications she takes for rheumatoid arthritis that has ravaged multiple joints in her body since she was 2 years old. She is 38 now.

Paradoxically, what she wants you to know is that she’s among the lucky ones. She has insurance that helps cover the cost of the drugs.

“There are so many others out there who have higher deductibles and out-of-pocket costs where these biologic medications, whether it’s for arthritis, multiple sclerosis, epilepsy, organ transplant, etc., take allof their extra money,” she said.

Or patients decide they cannot afford the specialty prescriptions and they go without, often leading to more health problems and costs down the road.

Read More: http://www.jsonline.com/news/milwaukee/when-the-choice-is-health-or-hearth-k45k7oo-156039825.html

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Getting Closer To Myself: Does This Chronic Illness Stuff Ever Stop Feeling New?

“I’ve been at this for four years now.  But I don’t feel very practiced.  I feel kind of, well, not numb.  The opposite of numb?  Like I’m wading in quicksand?

To be honest, I don’t know how I feel right now.  But I wonder if this ever gets easier, ever gets less pressing.

I’ve been wondering lately if I’ll ever get ahead of my illnesses, if someday, I won’t feel quite so much like a sick person.

But it also worries me.  What happens when I get used to this?  What happens when things no longer rock my world off its axis?  What happens when abnormal tests, abnormal blood work, abnormal everything, becomes the rule rather than the exception?  Am I there yet?  Am I already there?”

Read More: http://gettingclosertomyself.blogspot.com/2012/05/does-this-chronic-illness-stuff-ever.html

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Adventures In Flying

Today was supposed to be the day that I made my 20+ hour trip from South America to my parent’s house in South Texas. Over the past few weeks, and especially over the past few days, I’ve been a little nervous about taking such a long trip on my own…but anytime such nervousness arose, I reminded myself that as long as I asked for all of the help that I needed, everything was going to be okay.

As I started my trip this morning, hours before the sun had even risen, I was feeling a little bit of relief. My largest suitcase (which I can’t even carry/roll on my own) was checked in to my final destination, and all I had to go was get both myself and my carry-on through my scheduled four flights. Challenging, yes…but completely doable. During my first flight, I thought about how helpful everyone at the first airport was, as they gave me a helping hand with my bag or as they asked me to jump to the front of the many different lines that I encountered.

A few seconds into takeoff of my second flight, the plane that I was in struck a bird. Now I’ve never experienced this before, but the moment it started, I knew exactly what was happening. (It felt like the left engine was going to completely fall apart, and the air inside the cabin had a “burnt” smell.) I knew as much, partly because I had done some extended reading on the topic of “bird strikes” soon after the U.S. Airways flight landed in the Hudson River a few years back, after losing both engines due to bird strikes. I also started to remember, as I sat there frozen, how all of the articles mentioned that the most dangerous bird strikes were the one which occurred seconds after takeoff.

In what seemed like an eternity, but which in reality was probably less than a minute, the pilot came on the intercom to tell us that we had indeed run into a bird, and that we were lost almost all power in the left engine. He was going to turn the plane around for an emergency landing, but in order to do so he would first have to increase our altitude. He also told us that we could expect to see emergency vehicles on the runway as we landed.

And in what seemed like a double eternity, we continued to increase our altitude…even though our ultimate goal was to get back on the ground as quickly as possible. Before I knew it, the wheels touched down on the tarmac, and everyone let out a collective sigh of relief (which was immediately followed by applause and clapping).

As we taxied back to the gate, the reality of our situation started to settle in. Imagine a tiny airport in South America with a once-daily flight to the U.S., and with not a maintenance hangar in site. This is exactly where we were. Now don’t get me wrong…I think every person on that plane was happy to have landed safely…but it was quickly evident that we were dealing with a problem that was going to take the airline days to resolve.

I started to think about everything that was in my near future: having to collect the bag that I couldn’t even carry/roll, having to take a taxi or a shuttle to a hotel, having to spend a yet-to-be-determined amount of nights in this hotel (ended up being two), and than having to complete this process in reverse when it was time to go back to the airport. I immediately started to get anxious, but ended up thinking the same thoughts that have gotten me so far: everything is going to be okay; I just have to get through it one step at a time.

While I was being wheeled around the airport (the guy who was pushing me was also managing to pull my large suitcase at the same time), I was still feeling optimistic. (I was also feeling what has probably been my largest adrenaline rush ever.)

The long line at the tiny airline counter had already formed by the time I and the four other people in wheelchairs showed up, which was not a surprise considering that we were the last ones to get off the plane. What was a surprise, however, was the airline employee who told the people pushing the wheelchairs that they needed to put us at the end of the line.

I immediately objected to being put at the end of the line, and demanded that those of us with wheelchairs be allowed to go to the front of the line. The airline employee’s response remained unchanged: we were to wait our turn, at the end of the line.

I told the young man who was pushing my wheelchair that this was not acceptable, and asked him to please wheel me towards the front of the line. I could tell he was confused: should he listen to his fellow airport employee, or to the passenger in the wheelchair? In the end, he chose to listen to the passenger. As he pushed me towards the front of the line, the employees who were pushing the other wheelchairs also followed suit.

Which leads me to my next surprise: some of the passengers in the first class line started to complain (out loud) that those of us in wheelchairs were being given preferential treatment. (Talk about being *completely* flabbergasted!) Luckily, the passengers who agreed that we should go to the front of the line outnumbered those who disagreed, and quickly stepped aside and told us to please go ahead.

Despite these few “misguided” people that I encountered during today’s journey, I’m still convinced that a large majority of the people that I have encountered so far–employees and fellow passengers–have been more helpful than I could have ever hoped for. (I’ve counted at least twelve pairs of hands that touched my carry-on suitcase today, and the taxi driver and the hotel staff have been extra-accommodating.) It’s sad that those of us with disabilities continue to encounter attitudes such as some of those that I experienced today, but it’s also nice to see that there are so many kind souls who are ready to help without even being asked to do so.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Kathryn

Kathryn

Real Profiles of Rheumatoid Arthritis
Photos © Kathryn

Name?

Kathryn

Age?

22

Location?

Boulder, Colorado, United States

How long have you lived with RA?

Only about 14 months. I developed symptoms in January 2011, and was formally diagnosed in August 2011.

What advice would you give to someone who has just been diagnosed with RA?

Stay positive! Explore all your options and keep an open mind. Living with arthritis and chronic pain is tough, but allow yourself days to feel sad. Don’t let your medical team call all the shots – it’s your body and you definitely know it best. A good relationship with your doctor is key, so exercise your right to “shop” around for doctors, and find someone who really fits for you! Make sure you’re heard when you need to be; it’s okay to speak up! Don’t let your arthritis define who you are – work with your physical limitations, but don’t let them keep you from doing what you love.

Do you use any mobility aids?

I rely on my cane to help me walk, especially on the stairs, and I will sometimes wrap my swollen wrist in an Ace bandage to support it when I need to get some computer work done.

How has living with RA helped to improve your life?

Before my diagnosis, I struggled a lot with staying positive about my life. Now, I am incredibly positive most of the time! Life with arthritis can be pretty sad without constant positivity and a great attitude. I’m also learning a lot about how my body works and how I can work with it. I have a bunch of free time since I took a semester off of school, so I have used that time to learn a lot about autoimmune diseases and the best ways to take care of myself. After years of school and loads of stress, I’m finally learning to relax and do what’s best for me. I sleep in, take long naps, and read as many books as I’d like. I work from home, and develop to do lists that allow me some flexibility and time to relax. In middle and high school, I was a pretty decent artist, but dropped art in order to focus on my college studies. Now that I have time off, I’m getting back into my art and really loving it! I’ve also started collecting and planning some vegetarian and gluten free recipes; I hope to start my gluten free lifestyle soon!

My RA diagnosis has also made me a more compassionate person. I sympathize with other chronic pain sufferers, and am becoming active in a number of chronic pain circles.

Do you have any visible signs of RA?

I have rheumatoid nodules on my thumbs, a great deal of swelling in and around my right wrist and ankle, and swelling in my knees. My fingers are also frequently swollen. My gait is very visibly affected, as I rely heavily on my cane and tend to walk at a slow pace with stiff knees.

Can you please describe some of your favorite coping strategies for living with RA?

I have a wonderful support system in my family, friends, and especially my boyfriend DJ, who is my constant caretaker. I enjoy fresh flowers and try to have them in my home as often as possible, where they brighten up my day. I rely on my loved ones to help me through my rough days, but I’m not afraid to cry, rage, or just have a mopey day every once in awhile. Since my diagnosis, I have also started blogging as a way to express myself, release some stress, and cope with the day to day struggles I experience. I love reaching out to other RA and chronic pain sufferers and have made some great new friends through blogging (My blog is here.) When my wrists feel okay, I like to open the windows and sit in the sunlight to work with my sketchbook. As often as I can, I go out to visit my horse, Uno. I rescued him as an 8 month old, and he’s been mine ever since! He is such a sweetheart, and gives me extra cuddles when I’m feeling down.

Can you please describe your current medical (traditional and alternative) treatments?

I’m currently on a weekly injection of methotrexate as well as a weekly injection of Humira. I take Plaquenil twice daily and a folic acid supplement every day. My boyfriend and I make it a habit to go for short walks as often as possible, and I stretch and do a little yoga daily. I’ve recently started drinking a glass of 1/2 water and 1/2 organic tart cherry juice daily.

Is there anything else about yourself that you would like to share?

I hope to get back to school in the fall, and will complete my undergrad degree in Environmental Studies by next year. I’d like to get my masters degree in Environmental Public Policy. My ultimate goal is law school!

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