Spotlights On Those Who Love Us: Meredith Brabon!

I've written before about my "Australian soulmate", but in case you missed it, here is Kate's spotlight, While there are many similarities between us (including Spondylitis), a central one is our endless love for family. Kate is in the middle of her two sisters, Emily and Meredith. I've joked that I'd love to be the fourth sister and somehow they've made me feel like I am.

Recently Kate suggested expanding my "Spotlight Series" to include not only people living with chronic illness, but to their loved ones as well. I thought her idea was fantastic, especially since a central element of my blog has been discussing the relationships that have sustained me. Luckily Kate's youngest sister Meredith hopped right on board and I'm grateful for her enthusiasm! While we may be the ones physically enduring our illnesses, it can often be just as hard on the people who love us. After watching my family, friends, and John this past year as I struggled with my health, I'm more sure of that than ever. I'm infinitely grateful for their strength and support no matter where life takes me.

Meredith is 14 years old and in the 9th grade. Soon after I began e-mailing with Kate last year, I was also in touch with Meredith. I've loved learning more about her plethora of interests, but the one we've discussed most is her love of writing. Her work truly illuminates what a uniquely beautiful soul she has. She has even sent me some original poetry, including this poem about my friendship with Kate...

Kate & Maya

Each day’s an unknown abyss,

So deep you can’t see the end,

You just have to stumble blindly through,

And make your way carefully round the bend

No one else quite understands

What you feel each day,

Well, that’s what it had been like

Till you found someone through the haze

Your pain, your anger, your shadow

Is the reason you found each other,

But neither of you would trade it in

For the refuse, the safety, the cover

On different ends of the world,

You live distantly, far away,

But the invisible force that connects you

Beats the distance any day

To get a text in the morning,

or an email at night,

Is better than any medicine,

That helps win the fight

You’re both wonderful people

Fighting the same battle

I will always look up to you,

Like calves look up to cattle,

Strong and courageous,

Knights in shining armour,

Believe it or not,

It’s what you both are

Who in your life is living with chronic illness? Please say a bit about the disease itself and when they were diagnosed.

The person in my life living with chronic illness is my sister, Kate Brabon.  She was diagnosed when she was 22 years old with Ankylosing Spondilytis (AS), which is a form of arthritis that primarily affects the spine, although other joints can become involved (what other joints can become inflamed vary from person to person). It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort.

What is your relationship like? 

Our relationship is very strong.  Kate means the world to me.  I don’t know what I could do without her, without having her by my side everyday.  I know that I would be a very different person if I did not have her in my life.  We do heaps of things together.  Now that I’m back at school, I can’t see her during the day, but often at lunchtime I’m on my phone, and my friends don’t even bother to ask who I’m messaging because they know what the answer is going to be.  Kate. 

Has your relationship changed in any way following their diagnosis? If so, how?

I think it has.  I think that there was a period of time when Kate’s pain controlled her, which put a wall between us.  But over the past year, this wall has been knocked down, and now we are closer than we have ever been.  I think in a way Kate’s illness is a blessing in disguise for a number of reasons, one of them being that now she feels she can talk to me about anything.  And the same goes for me.

What has been the most difficult part of coping with your loved one's illness?

Feeling like you can’t do anything.  Watching them in pain, and not necessarily being able to say that everything will be alright, because you have no control over it.  Talking can be hard too, as it’s not easy knowing what to say, or what the right things to say is. But just keeping positive is the best thing you can do.  You just need to learn that there are actually ways you can help, as little as they may seem.

Where do you get your strength?

Music, writing and other people.  And from learning new things. 

What advice would you give to someone who also cares for an individual living with illness and/or disability? What helps you?

Don’t distance yourself from them.  Even if you feel like they don’t want to be around you, or even if you feel uncomfortable being around them, they need you and they want you there.  When Kate’s pain was first especially bad, I felt uncomfortable because I didn’t understand.  I didn’t know what to say or do. So I didn’t do anything.  I distanced myself from her because I thought she didn’t want my company.  But I learned.  I realised that just being in the room, giving a hug can help.  When we were away on holidays, there was severe humidity everyday, which Kate’s body does not cope well with.  I think she was in more pain that I realised. But because I was on holidays, living in the moment, I wanted to have fun.  So I stayed with her, being cheerful and helping wherever I could.  I realised that having a good mood, and spreading it around is a great way to get her to feel happy.

If you could send one message to medical professionals around the world, what would it be?

Be supportive and straight to the point.  Don’t let your patient feel like you don’t care, or like they are a bother.  And let them feel welcome to ask questions.  So basically, overall, remember that they are not just a patient, but a person, and you need to be as helpful as you can, giving the best help you can both medically and morally.  

I'm hopeful that Meredith's spotlight will be the first of many. Do YOU love someone who is living or who has lived with a physical or mental chronic illness and/or disability? Would you like to tell your   story? If so, please contact me at mklaub@gmail.com. I'd love to hear from you!

Meredith: Thank you so much for your thoughtful answers and for supporting Kate the way you do. Your presence is a true blessing in her life (and in mine too!)

Love,

Maya

A Health Update & What Fatigue Really Feels Like

I think it's high-time for a health update (if you guys don't mind) and I'll start with the good news: I'm beyond thrilled to report that my pain seems to finally be under control! After about a year of consistent (and often burning) pain ranging anywhere between 6-10 on the "pain scale", I'm now about a "1-4" on any given day. Who knows how long it will last, but I'll take it! I attribute this change to a few important factors:

1) I finally found a drug that works for me as well as Humira used to. Since November, I've been receiving monthly Orencia infusions in the hospital that seem to work wonders. The 3 1/2 hour infusions aren't fun and, just like all TNF Blockers, Orencia weakens my immune system, leaving me vulnerable to illness and infection. However, I'm willing to take the bad with the good because...well...the good is so good. While I risk sounding overly sentimental (oh, who am I kidding? That's my middle name), I feel as if I have my life back; I feel as if I can be Maya again.

2) I've also been on a gluten-free diet since late November and, while I was initially skeptical and resistant to giving up my bread and baked goods, it has been entirely worth it (and please appreciate that this is coming from a bread fanatic)!  I have done lots of reading about the benefits of removing gluten from our diets. The truth is that  - sick or not - many of our bodies just can't handle the stuff. According to Catherine Guthrie, a writer for Experience Life Magazine, "gluten is an umbrella term for proteins found inside many grains and seeds, namely wheat, rye, barley, spelt, kamut and triticale. Although most of these foodstuffs, especially wheat, are considered a mainstay of the human diet, not everyone can digest them." She goes on to explain, "...grains in general are a relatively new addition to the human diet. Our ancestors began eating them, at the earliest, 15,000 years ago, which is a blink of an eye in our 2-million-year history. Some of us have adapted; others have not...Today, up to 90 percent of the protein in wheat is gluten, a 10-fold increase in the past 100 years. The average American consumes about 150 pounds of wheat each year."To read the rest of this article, click here. I'm not trying to push this lifestyle on anyone, but it's definitely worth a try! Trust me - if it makes you feel better, you wont even be tempted a little bit by that cookie. Your brain quickly becomes re-wired: Cookie = pain.

3.) I give myself ample down time and treat my body right. For the majority of my life, I think I was living in some form of denial, while the truth is that Spondylitis is here, it's forever,  and it demands some very real changes. Before last year, if I was experiencing a "good day", I would push myself to the limit. Part of that was being a college student and wanting to keep up with the fast-paced lifestyle, but deep down, I'd also somehow believe that a good day meant my disease was miraculously cured. It was obviously never the case and, with increased activity and stress placed on my body, my pain retaliated. I had a hard time accepting that my limitations were so different than those of my peers, but now I've come to a place of acceptance. If I'm in pain, I can't push myself to walk that extra 5 city blocks. I can't stay stand around in bars for hours because the pain that night and the following morning is just not worth it. I can't stay out as late as everyone else because sleep is a driving force in my pursuit of health. I can't just eat anything I want; food is fuel and I need to ensure the right things go into my body.  None of it is worth the aftermath and, the I know the longer I live in this body, the more self-aware I'll become.

Now on to the not-so-great news...

For the past month and a half or so, I've been feeling outrageously fatigued every day. I can wake up at 8:30am and easily get back into bed at noon for another four hours of rest. I feel as if I could sleep at any given moment which gives me a major disadvantage in school, as you can imagine. When fatigue hits,  each and every task (getting dressed, taking the bus, seeing friends, etc. ) feels tremendous and can completely knock me out. It's important to understand that real fatigue is not just feeling tired; it's an entirely different beast. I read some descriptions of fatigue by fellow patients on the Spondylitis Association of America's website. Michael from New York City wrote, "true fatigue feels like "wearing a jacket containing 40 pound weights in each pocket, while slogging through a vat of molasses with suction cups glued to the bottom of your shoes." Tim from Phoenix explains, "No amount of sleep will reduce the fatigue that makes me feel like I'm walking around all day with one of those lead aprons that they use at the dentist's office for x-ray protection. It feels like when you experienced a BAD case of the flu - pre AS." Unfortunately, these descriptions are dead-on. Below, you will read about Spondylitis-induced anemia. which I have apparently developed. My blood tests show "mild anemia"and it has been enough to profoundly impact my life.

Here is a more detailed explanation of the causes of fatigue in Spondylitis (copied from SAA's official website)

Fatigue In Ankylosing Spondylitis

As reported in our News Section on November 20, 2006.

"Fatigue has been recognized as one of the major complaints among patients with inflammatory rheumatic diseases." State Croatian researchers in a recent study. But what causes fatigue in Spondylitis? Fatigue can be caused by many things related to Spondylitis such as loss of sleep because of physical discomfort. But it can also be a by-product of the disease itself. Spondylitis causes inflammation. When inflammation is present, your body must use energy to deal with it. The release of cytokines(1) during the process of inflammation can produce the sensation of fatigue as well as mild to moderate anemia. Anemia may also contribute to a feeling of tiredness. Treating the inflammation caused by Ankylosing Spondylitis can assist in decreasing fatigue and anemia. We recommend discussing treatment options with your doctor.

Tip: Fatigue can be a big part of pain. In addition to speaking with your doctor, ask your physical therapist to teach you how to move with efficiency so that you may minimize fatigue and frustration. The Croatian researchers conclude that, "…the intensity of fatigue should be assessed more frequently in patients with inflammatory rheumatic diseases as a marker of both disease activity and functional ability."

(1) Cytokine: A small protein released by cells that has a specific effect on the interactions between cells, on communications between cells or on the behavior of cells. The cytokines includes the interleukins, lymphokines and cell signal molecules, such as tumor necrosis factor and the interferons, which trigger inflammation and respond to infections.

Although the fatigue is the hardest to cope with, I've also been experiencing a whole slew of other strange symptoms: occasional dizziness, extreme thirst, mild hair loss, many mouth sores, and night sweats. While these symptoms sounded like possible side effects of a drug, my primary care physician thought they sounded too "auto-immune" in nature. She believes that they're more likely linked to Spondylitis or maybe another issue all together (let's pray that isn't the case). She ordered a wide spectrum of blood tests that I got today. I just pray that we can get to the bottom of all of this, so that I can feel better and truly enjoy this improvement in my pain. Please keep me in your thoughts and I'm wishing all of you good health and happiness (as always).

Love,

Maya

Beautiful Pill Box Giveaway (Choose Your Favorite)!

After I had such a great response to my last giveaway, I wanted to start making it a regular thing. Since I take about 15 pills a day, I always have my pill case with me. I started searching on Etsy.com for pill boxes that caught my eye and - sure enough - I found these beautiful boxes from The Dailey Dose of Quilts! While my pill container is made of drab, green, plastic, these boxes are covered in beautiful and fun fabrics chosen by the artist Cindy Criswell Dailey. They're not just meant for pills either; these boxes can hold jewelry or any small trinket. 

I asked Cindy if she'd be interested in participating in a giveaway and she was immediately on board! Not only that, but she is offering not one - but THREE - of her boxes to give away to three lucky readers!  Click here to see all of the boxes you can choose from if you win. 

The 3 winners will be chosen at random on Saturday, April 9th (2 weeks from today). You have the opportunity to enter twice...here's how:

For Entry #1:

Head over to the Daily Dose of Quilts on Etsy.com. Take a look around the shop and then leave a comment on this post answering the question: "What is your favorite item in the shop and why?" Then please copy and paste a link to that item so that other readers can check it out too.

For Entry #2, please do 1 of the following 3 things:

1) Head over to Dailey Dose Of Quilts on Facebook and "like" this page.

2) "Follow" Cindy's blog (there is an option to do this on the top left corner of the webpage).

3) Visit Cindy's blog and leave a comment for her on your favorite post.

(Don't forget to comment on this blog entry and tell me what you've done! If I don't know, I can't count your well-deserved entry)

Aside from creating her beautiful artwork and being a wonderful wife and mother of three successful boys, Cindy also suffers from Osteoarthritis. Here is today's spotlight on Cindy Dailey - the generous artist behind today's giveaway...

What is the year you were first diagnosed?

I think I was diagnosed with Osteoarthritis about 15 years ago. I would have been 35.

What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?

With any diagnosis, not just Osteoarthritis, I recommend you learn as much as possible about your condition. Settle in your mind how you will adjust and live your life. If you are terribly distraught over the information you have received, you may find a support group very helpful. I have a "glass half full" personality. I could think of so many things that could have been so much worse. Due to family members being diagnosed (my brother and my mom), I was diagnosed in the very early stages.

Please explain a bit about how your condition affects you. 

Osteoarthritis in my case affects me by limiting my hip, knee, and shoulder mobility.

Osteoarthritis is a type of arthritis that is caused by the breakdown and eventual loss of the cartilage of one or more joints. Cartilage is a protein substance that is a cushion between the bones of the joints. Osteoarthritis is also know as degenerative arthritis. There are over 100 different types of arthritis conditions and osteoarthritis is the most common, affecting somewhere in the neighborhood of 22 million people in the United States. Normally Osteoarthritis occurs more frequently as we age. Before age 45 Osteoarthritis occurs more frequently in males. After 55, it occurs more often in females. Race does not seem to factor in the disease one way or the other.

The cause of Osteoarthritis is mostly related to aging. With aging, the water content of the cartilage increases and the protein that makes up cartilage degenerates to the point of flaking or forming tiny crevasses. Often with aging there is a total loss of the cartilage cushion between the bones of the joints. Repetitive use of these worn joints over time can irritate and inflame the cartilage which causes joint pain and swelling. Loss of this cartilage cushion causes rubbing between the bones, leading to pain and limiting joint mobility. You will often see Osteoarthritis in multiple members of the same family, which could indicate a genetic basis for this condition. That is how I found mine early. My brother who is 7 years younger than I am was diagnosed at 28 with a pretty severe case of Osteoarthritis. His physician asked about his siblings and recommended that I be checked. Because this disease normally runs on the female side of the family and because my mom had been diagnosed, they felt I should see if I had the disease too. I had aches and pains but did not think a lot about it. I keep pretty busy so just went along with getting a check up. That's how I found out I had it. Since then I try to pay attention. I am short (all of 4'11''), so even though I am not skin and bones, it is important not to be way over weight. 

Symptoms of Osteoarthritis is pain to the affected joints which will usually get worse as the day goes by. Pain and stiffness of the joints can occur after long periods of inactivity. Examples for me that I have to be mindful of: sitting at my sewing machine for long periods, I traveled for work in the past and sitting while traveling would become uncomfortable. I would periodically take breaks to walk around and stretch out.Since my diagnosis i have owned and rode horses and a variety of other activities that I enjoy.
In severe Osteoarthritis, once the cartilage cushion is gone, the rubbing between bones will cause pain at rest or pain with limited motion. Symptoms of osteoarthritis vary greatly from patient to patient. Some people can be debilitated by their symptoms while others show very few symptoms in spite of dramatic degeneration of the joints. Symptoms can also be intermittent. I have been taking Celebrex 200 mg two times a day for several years and this has kept my pain in check. I have gone through several periods where I would need an injection of cortisone in either my hips or shoulders. Then I go for a year or so without problems. I found that a few missed doses of my celebrex would cause me to need the shots. Recently I have had a change with my insurance and I have had to make some changes. The insurance company I use requires that a generic medication be used. I tried Naprosyn, then I switched to Meloxicam (Mobic). Neither of these medications have done as well as the Celebrex, but I am hopeful that the Meloxicam will work, I've only used it few a few weeks now.

Did your diagnosis have an impact on your artwork and your decision to start your business?

I have crafted in one way or another for years. My crafting intensified after a bad period of working for a large company who treated some of our Department pretty badly over  workers compensation claims that were handled by the insurance company badly. They messed up the claims by following the wrong states Workers Compensation rules. They did this with a couple of employees. These [Workers Compensation] rules are set in stone and it was really frustrating to go through this rough patch. I can laugh about it now because it's in the past and perseverance within our group finally got things worked out. I use to laugh after a rough day of arguing and documenting these issues, and I would come home and quilt for hours. I would shove a King/Queen size quilt through a standard sewing machine to quilt it. I needed the stress relief that badly. Now I quilt at a much more relaxed pace. I do have to say some of my best work came during that period. A really difficult day at work required some creative work at home. It was like I had to be good at something during that time. Crafting was it.

What are 3 things you couldn't live without?

First my family, my books (any and all), I love to read, and my music.

Where do you get your strength?

My strength is my God and my family. Most of us have a medical background. I am both a nurse (LPN) as well as an Emergency Medical Technician Intermediate level. My husband is An Emergency Medical Technician Intermediate as well as the Coroner for our county. Our older 2 sons are Firemen / Emergency Medical Technicians. Our youngest son in a freshman in college and wants no part of any medical related field. Right now he is in Engineering. With our backgrounds, my Osteoarthritis is pretty low on the chart of worse case scenarios.

Crafting has also been a great stress reliever for me. I make quilts, pill boxes, key fobs, business card cases, trinket boxes, and a variety of other items that I embroidery on. For me on a really busy day when I feel that I have not accomplished much, crafting is a time for me to sit create and feel good about myself. Each year I give away 1-2 quilts for some type charity event. In years past I've sent quilts to the victims of Katrina, Cancer Children, Battered Women's organizations, premature babies, and children who have lost their homes to fires.

What are you most proud of? 

I am most proud of my children. All three boys have attended good schools and have all gone to college. They are all such individuals. They each have picked the college of their choice and excelled in what they wanted to do

If you could send one message to medical professionals around the world, what would it be?

If I could sent one message to medical professionals around the world it is, "Listen to your patients". So many times in the busy physician's offices, the doctor and the staff are so busy looking at the next thing on the list and how quickly they can get out of the office today. I see it so often: the person in the office with them has scheduled time and would like to talk more freely about what is going on and what help they might can offer, but the physician just goes in and out and doesn't really listen to fears that are real for the patient.

Thank you Cindy! Your work is so lovely (just like your spirit).

Love,

Maya