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Wednesday, April 16, 2014

Fibro Warrior Wednesday - Jody aka Mia Love



This week's Fibro Warrior is Jody. She lives in Southern Wisconsin, the land of cheese! (Thanks, Jody, for the reminder of the food I miss the most :) ) Jody was diagnosed with Fibromyalgia at 39, in June of 2009.
 
What lead up to your diagnosis ?
The initial symptom for me was horrible pain in both feet, to the extent that I thought bones were broken and had difficulty walking.  That resolved itself in short order but then I had more ‘broken bone’ like pain in my collarbone.  Once again it resolved and then the pain moved to my left elbow, a throbbing ache that made it difficult to extend my arm.

Beyond the pain, I was extremely tired and couldn’t seem to get enough sleep.  I became worried and finally went to see a doctor who gave a tentative diagnosis of Fibromyalgia. 

Upon moving home from North Carolina a month later, I saw a Rheumatologist I was familiar with from an Achilles tendon tear years before.  He did all of the blood testing we’re familiar with, the scans as well and concluded I have Fibromyalgia along with other concurrent issues.

Were you working at the time?
I was working full time in the medical field at the time of diagnosis. 

What was your family life like?
I’ve been married for 23 years and we have two adult children, a boy and a girl.  Like any typical American family, we were always on the go and busy, whether that was working or play.  We spent all of our free time as a family and truly enjoyed hanging out with our kids and watching them grow up.   


How did your family initially handle your illness?
I was lucky because my husband’s eldest sister has RA and Fibromyalgia so the whole family had at least heard of it and knew some of what goes along with it.

In the beginning, they took it in stride and didn’t seem to be affected at all because I did a pretty good job of hiding the fact that I was ill and in pain.  I managed to keep hiding the progression over the next three years until it became too much.

The last two years have been difficult on all of us as the disease has worsened.  My husband and children definitely see the symptoms now.  They see the damage and suffering.  I can see how much it saddens and scares them and it’s heartbreaking for me to watch them go through that.

How has your family/ work situation changed since Fibromyalgia entered your life?
I managed to keep working for about six months after diagnosis but then had to quit because of the pain, exhaustion, and my memory failing (fibro-fog), which while awful for all of us. Plus, in that line of work it could have become dangerous.

My family situation is similar with the exception that they’ve had to help a lot more.  I rarely drive now so they have to take me places.  I also have a caregiver that comes in three times a week for a few hours to help with chores, errands and taking me to necessary appointments.  My family has had to get used to a new person being in the home and the fact that I need that level of help and care now.

What do you feel is the most challenging aspect of Fibromyalgia?
This is such a hard question because living with Fibromyalgia is so difficult on every level – physical, mental and emotional, financial.  Narrowing it down to one thing seems impossible but I’ll go with grieving the life that once belonged to you but Fibromyagia has stolen. 

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
IBS, Migraines, Spastic Bladder, Pelvic Floor Dysfunction, TMJ, Small Fiber Neuropathy, High Blood Pressure, Hypothyroidism, Acid Reflux, Ulcers, inability to control internal thermostat, etc. 

The list really does seem long and one thing I’ve learned is they go hand in hand and feed off of one another.  If I’m in a flare, many of the other issues want to jump on the bandwagon and make it absolutely miserable.  If the IBS acts up, the Fibro tends to get irritated too.  And so on and so forth.  That’s what makes learning how best to care for yourself so difficult.  

What have you found/ done that has improved your symptoms?
The combination of medications that my doctors and I have figured out work best for me.  Quiet time with loved ones.  Hot showers, deep breathing exercises, soft music, reading or watching TV/movies to take my mind off it and when all else fails, sleeping.

How open are you with friends & family about your illness & symptoms?
It depends on the family member and/or friend.  If I’m comfortable with them and if there is trust and communication already in place, I’m okay with sharing most aspects of being ill.   But even then, it can be hard to share, especially with family when you see how it can scare them and how much they worry for you.  We never want to burden anyone.  Nor do we want to look pitiful and broken.

Do you blog about your illness?  If so, what inspired you to do so?
I do blog about Fibro and the various ailments that go along with it.  The inspiration came from someone I love and adore, Tony, who not only gave me the platform by building the blog, but also the courage to talk about being sick, publically. 

It’s become both a great method of therapy for me as well as making me feel as if I’m helping others with my story and hopefully, them being able to relate to it and not feel so alone.

What is the best advice you've received regarding Fibromyalgia?
Learn how to be kind to yourself because you’re going to need that now more than ever.
What was the worst advice that you followed?
I never received bad advice from anyone on how to handle being ill but I have been my own worst enemy.  I’ve pushed myself relentlessly in every area and it has done nothing but make every aspect of my illness worse.

What is your favorite way to cope with your life as a spoonie?
Spending time with those I love, listening to music, reading and hot showers. 

What is one thing you've learned about yourself since your diagnosis?
I’m not nearly so in control as I believed I was.  Becoming sick has a way of showing you just how fragile and out of your control life can be.

Now that you've gotten to know Jody a bit, check out her blog and connect with her. She welcomes your emails.






Monday, April 14, 2014

The Importance of Stretching

- I originally posted this in August of 2010 but have found a reminder to be great even for myself. Stretching is so important for us, as much as we hate to admit it.


When I was first diagnosed with Fibro and sent for Physical Therapy they gave me a list of stretches to do daily. After a couple of weeks of being honest with my PT, and saying that no I really wasn't doing my stretching regularly, she told me that perhaps she needed to show me the stretches again because maybe I wasn't doing them right.  Something must be wrong, she said, or you'd WANT to do them on a regular basis.  I kinda blew off her statement at the time. But looking back, I know she was right.

I'd love to say I stretch every day now but it wouldn't be true. However, when I do wake up feeling tighter or a little more "Fibro-ey" I stretch. I stretch throughout the day when muscles feel tight, and sometimes I wake up in the night and I stretch.  It is the one thing that I know will make specific areas feel better.  Most of my stretching I do in the bed before I ever consider getting up in the morning.  Some days (as we all know) I'm tighter than others. Those days I stretch more, because I have to - just to get out of bed.  Other days I wake up with good movement and I don't really bother.

Rules
Before you attempt to get started with stretching here are a couple of rules that finally made the difference for me and turned stretching into something helpful rather than "exercise" or even "painful".


1. Start Small.  You don't have to do the full movement the first time (or even the first 10 times).  You may not be able to reach your toes (or complete a stretch) and that's ok.  Just do what you can to start and eventually you will find what works, and find you want to repeat the stretches regularly.

2.  Don't stretch any further than is comfortable. You should feel a slight stretch but if you feel strain (or pain) you've gone too far.  Back off or stop completely. Understanding what your body is saying to you is essential in proper stretching.  Too often we are taught that a little pain is a good thing.  It's not.  If it hurts, STOP.


3. Hold the Stretch. Ideally you want to hold most stretches for 2 minutes, but early on you won't be able to (you may never get to 2 minutes).  Hold it as long as you can without feeling pain or strain


The Difference Between a Stretch and Straining - I never realized there was one until my last attempt through physical therapy. It seemed that other PT's I'd gone to told me to hold it till it hurt, or that "a little pain is a good thing".  It's not a good thing.  Stretching should feel good.  Strain is when your muscle is working too hard and you will feel it both during the stretch and later.  It may take a little bit to really listen to your body and understand the difference, but if your body is saying "this is too much" listen to it.  Pain is not a good thing.  We are stretching to avoid pain throughout the day, not to increase pain.

------- Now Let's Get Started -----

Stretches
I was going to group these stretches by what they stretch but instead I'm going to give them to you in the order that I do them (typically from easiest to hardest - sometimes I don't make it to the harder ones).  Where I could I included images to show you these stretches.


- Full Body Stretch - Laying flat on my back in bed I attempt to lengthen everything.  I start by extending my legs straight out as far as they can go and pointing my toes outward, then bringing them back to a straight position and pulling my toes towards my head.  I then extend my arms out to my side stretching them as far as they will go, then slowly move them up above my head and hold them.  You should feel a few small adjustments (or pops) as you do this and work out some of the "kinks" from the night before.  If you think about it these are the same stretches your body does naturally when you yawn and stretch.  You are just doing them on purpose.

- Pelvic Tilt - laying flat on your back, bend your knees, keeping your feet flat on the ground.  Press the small of your back into the bed while slightly lifting the bottom of your pelvis upward. The pelvic movement is so slight that if someone is in bed with you they won't even realize you are doing it, but you will feel it.  I take this a step further (once I feel I can) into the...

- Pelvic Tilt into Table/Bridge - from the same position, lift your pelvis off of the bed, supporting your body on your shoulders and feet. Your body should be a straight line from your shoulders to your knees  Hold this for 10 seconds (increase duration as you increase ability).  Release back to the bed and then repeat.


- Hip Flex/ Back Stretch - lying on your back, stretch one leg out straight, while pulling the other knee into your chest and hold.  Then alternate. After you've done each leg separately pull both knees in to your chest and roll your chest toward your knees at the same time so that your back is curled and your head is looking at your knees.  

-Lower Back Rotation Stretch - Lying on your back with your arms spread apart, bring both knees to your chest and then let them fall to the side.  Keep upper back/shoulders and arms flat against the bed.
- Hamstring Stretch (seated) - this stretch is quite often my benchmark for the day. If I can touch my toes it's a good thing.  If I can't touch my toes I'm really tight that day and I'm probably not going to come out of that tightness for a while.  These are the days when more stretching is usually required to get me out of bed (sometimes interspersed with naps).

- Single Leg Hamstring Stretch - Keeping one leg straight out with toes flexed upward, bend the other leg placing your foot flat against the inside of the straight leg.  Lean forward reaching your hands towards your toes.  Don't hurt yourself by stretching too far. If you can't reach your toes, then grab your leg as far down as you can reach and hold.  As you do this stretch more you'll eventually reach your toes (I did).

- Piriformus Muscle - This stretch can be done laying on your back or sitting in a chair.

- Groin Stretch -
Cobra pose
- Back Extension (Cobra) - lying on your stomach, put your arms forward with your hands slightly outstretched from your head.  Push your shoulders upward.  You really should just be bending from the back, if you don't have much strength in your arms and shoulders, don't try to go very far up. Let your back do the work.

- Cat/ Cow Stretch - Get on all fours with your head down and your back  curved up. Butt in (almost like you are trying to look at your pelvis.  Hold that for a breath, then as you breath out, lift your head up while pushing your butt out and allowing your back to bow inward toward the bed.  Continue this movement through several breaths.

Unfortunately, you do eventually have to get out of bed, and once you do there are a few more stretches you should do for other areas of your body.  I like to do these in the shower, as the warm water helps to loosen things up.

- Neck and Shoulder Stretch - if you are like me and have neck/shoulder issues holding this stretch may be difficult and even painful. A good alternative is to put your arm behind your back as shown in the image but then place that hand against a wall, rather than using the opposite hand to hold it back there.

- Upper Back Stretch  -  Just put your hands against the shower wall as shown and stretch out while the water warms your muscles.

- Chest Stretch - This is basically the opposite of the neck/shoulder stretch above. Again I do it on the wall in the shower.  Facing the wall, place one arm flat on the wall straight out at shoulder height.  Then slowly turn your body away from the wall, keeping your arm against the wall.  Hold for 30 seconds then repeat with the other side.

- Shoulder Stretch - Facing the wall, place your hands palms out on the wall and slide them up as far as they will go above your head. Ideally, you want to be as close to the wall as possible before you start and get your hands all the way above your head bringing your nose touching the wall.

Of course, there are plenty more stretches you can do and if you have a chiropractor or physical therapists you may want to ask them to give you some diagrams of specific stretches that would help you with your specific areas of pain.  You can also just go to Google and type in "stretching" with the body part you have trouble with and you will find some great resources for stretching different areas of your body.

So how bout it? Do you stretch regularly?  If so do you have a typical routine you do or certain stretches that you find more helpful than others?

Wednesday, April 9, 2014

Fibro Warrior Wednesday - Ashli



This week we are talking with Ashli Chantelau of Huntsville, AL. She is another Fibro Warrior that I met through Twitter. While she lives right here in my hometown, we've not officially met yet. Hopefully, we will remedy that soon now that the weather is warming up.  Ashli was diagnosed in 1998 when she was 17 years old.

What lead up to your diagnosis (symptoms, dr visits, etc)?
I'd been dealing with migraines since I was a kid. However, for the last year I'd had this unrelenting fatigue and severe body/joint pain. I was in 5 car accidents between 12 yrs old and 17 yrs old. At 16 & 17, 2 accidents were at speeds in excess of 45 mph and I was sitting still at red light. I had physical therapy both times because I had wicked whiplash. I really feel like both the trauma from the car accidents and being sick so long with migraines precipitated the Fibro onset. I always had neck pain after those accidents but it worsened and never got better. (BTW NONE of those accidents were my fault. LOL I just had horrible luck.) My Neurologist recommended that I see a Rheumatologist. The first rheum appointment she loosely diagnosed me with Fibro.


How did your family initially handle your illness?
I lived with my parents, and had already been diagnosed with chronic daily headache and chronic migraine so being 'sick' wasn't new. I had already, years before, been withdrawn from school and home schooled. It was hard because I didn't "look" sick. I was so young so the majority of the people I came in contact thought I was being a bratty teenager. That was hardest. The people who told me it was all in my head. That I was being a spoiled brat and needed to get over it. My parents just felt helpless. After I had my daughter I understood that feeling but then I always thought "How silly. Like this is your fault." They were always supportive. They got me to the best doctors, paid for extra things insurance didn't cover, buying herbs/vitamins/supplements, etc.

Ashli with her daughter
How has your family/ work situation changed since Fibromyalgia entered your life?
I'm a mother and wife now. When my daughter was little she didn't understand Fibro. Even "Mommy is sick." didn't fully sink in. Now she is 11 and she's probably the most compassionate person in my life. She is always asking how I *really am and making sure I rest. It's both wonderful and horribly guilt inducing. It's harder to pace myself. I feel a lot of guilt because while I haven't ever been 'normal' or pain free since I can remember, I feel guilty about not being as active as my age should allow.

What do you feel is the most challenging aspect of Fibro?
The fatigue. Most of the time fatigue is really hard to work around.

Do you have any other co-existing conditions?
Chronic daily headache and chronic migraine. I have had migraines since I was 6. They became chronic at 12. My neurologist was the one who suggested I see a rheumatologist. He is a great listener and believed in Fibro. I also have nerve damage in my neck and knees. I feel like my migraines control the Fibro. They are my dominant illness. Sleep deprivation and nausea/throwing up can cause a flare. As I get older, I get more and more symptoms of Lupus. However, my antibody tests were negative. Eventually I'll make it back to a rheum and maybe do some more bloodwork and see what we've got. After so many years of tests and doctors, I just needed a medical break. 

What have you found/ done that has improved your symptoms?
Pacing myself. Which is an art in and of itself. Avoiding dyes and eating clean(er). Water therapy; swimming/walking in a pool.

Ashli and Hubby
How open are you with friends & family about your illness & symptoms?
They know I suffer. I'm more than willing to explain any symptoms, causes, treatments, etc, but I find most people aren't willing to listen. And even with explaining they still don't "get it". So that leads me to say the ever so common "I'm fine." 85% of the time.

What is the best advice you've received regarding Fibromyalgia?
Not to worry about the ones who don't believe it exists. That it ISN'T all in my head and I'm legitimately sick.
What was the worst advice that you followed?
Anything that was followed by "It cured my aunt's best friend's uncle's lawyer's proctologist...." I was so desperate to 'cure' myself when I was younger I tried ANYTHING. I've learned over the years that there's no magic pill or drink. It's a combination of many things and even then, there might not be a 'cure'.

What is your favorite way to cope with your life as a spoonie?
Blanket burrito, heating pad and a good book.

What is one thing you've learned about yourself since your diagnosis?
I am so strong. Stronger than I ever thought. Getting through being a sick kid was hard. Getting through being a sick teenager was harder. But conquering being a sick mother? Ah, the hardest yet. I always think I've got nothing more to give.....that's often when I find an extra bit.

If you'd like to get to know Ashli better, you can follow her on Twitter.

Thursday, April 3, 2014

Dear Fibromyalgia

The book "A Return to Love" talks about the idea of writing a letter to your illness and letting go of all the negative thoughts you have towards it, the "why are you doing this to me" thoughts. When I read this I thought it was interesting and I thought I'd write a letter to my illness, Fibromyalgia. However, I kinda put that thought on a shelf where it sat for a while. I brought it down on occasion thinking I should do that.



Dear Fibromyalgia,

You suck. Plain and simple. You've ruined a lot of lives and at times I've felt you ruined mine. We've known each other for a while now and I'd love to say you've been there for me, but the truth is you're not a very good friend. You've pushed me in a lot of ways, and a couple of times you've almost pushed me over the edge. You've brought me to the point where I considered suicide as an option to escape the pain you cause, but I realized that the pain I'd leave behind for others would be worse than the pain you cause me, so I chose to fight back. You and I have been fighting for years now. I'd say that overall it's a draw, but I still have some fight in me and some hope that I can win.

What I realize as I look back over our last few years together is that you've taught me a lot, and I actually have a lot to thank you for. Thanks to you have a lot more empathy for those who are disabled. I no longer look at an overweight person in an electric cart and assume they are just lazy. I know there are many real things that may have lead to their state, and that they may be suffering quite a lot and unable to reverse their situation.  Thanks to you I am a better person both mentally and even physically. Thanks to you I am stronger. Thanks to you I have the ability to tolerate pain that would bring many men to their knees in tears, and I can do it with a smile. Thanks to you I am a much better actress.

Thanks to you I have a new drive to finish school so that I can use the pain you've caused me and all my experiences in life to help others in a profound way. Thanks to you I have become an advocate not just for my own health but for the health of others. Thanks to you I am no longer blind to the effects that the environment has on my body. Thanks to you I have learned that health is about much more than how much you work out. Thanks to you I am making better choices with what I put in my body. Despite all my health issues I am a much healthier person and behave in healthier ways.  Thanks to you I make better choices about who I choose to spend my time with and how I spend that time. I have a much better sense of what is important in life. I know who my real friends are.

So Fibromyalgia, we will continue this dance for the rest of my life. I will fight with you, you will bring me down. But, I will get back up again. I will fight you and I will win and along the way you will continue to teach me that I have much to be thankful for.

Julie

Wednesday, April 2, 2014

Fibro Warrior Wednesday - Laura Kelly-Pifer



Laura Kelly-Pifer is this week's Fibro Warrior. She is located in Northwest Pennsylvania. She was diagnosed with Fibromyalgia about four years ago. However, she's been diagnosed with Rheumatoid Arthritis (RA) since 2005, just a few months before she turned 30.      

What lead up to your diagnosis (symptoms, dr visits, etc)?
I already was seeing a specialist for my RA and at one of my check ups mentioned that there were some additional symptoms that I was experiencing. They were totally different from the RA so I’m glad I asked. It was then that I was diagnosed with fibro.

What were the additional symptoms that lead to your Fibro diagnosis?
I had a lot of muscle soreness, fibro fog, pure exhaustion, and stiffness from what I can recall.
Were you working at the time?
Yes, full time outside the home and also had began my Coaching Career on the side as well as the role of Mommy.

What was your family life like?
I was married with 2 girls, pets.

Pets? How many? What kind?
I have 2 gray cats and 2 dogs.  One is a Cocker Spaniel and the other a Lab/Border Collie mix.

How did your family initially handle your illness? 
With a chronic pain condition, it’s hard for anyone but you or those going through it to understand.  Thankfully, my family was/is supportive but they weren’t always.  In the beginning, there was nothing that they could “see” so it was hard for them to relate.  Because I had already been suffering with the RA, my family more or less knew what to expect once the Fibro came along.

How has your family/ work situation changed since Fibromyalgia entered your life? 
I’m probably not in the norm here but it’s actually gotten A LOT better.  As a family, we are healthier than ever before.  We’re physically active, we eat less processed foods, more fruits and veggies and, I was able to leave my job from Corporate America and now work from home as a Self Discovery Coach ™.

Tell us more about your coaching.
I'm a Self Discovery Coach(TM).  I help others create a life that they love by working one on one with them.  Coaching is a process that allows the mind to stretch and grow so that you can create a life that feels good, both inside and out.  It helps you become that AMAZING person that is already inside you!   You’ll have more clarity to find your passion and live it, to lose that stubborn weight and to find more balance in both life and your life/work.  All those things that you have been thinking about can become a reality with coaching.  A Coach can help you identify those things that may be holding you back and help you be the best you can be!

What do you feel is the most challenging aspect of Fibro? 
When I was first diagnosed, I had a period where I experimented with different meds to see which helped best.  I packed on 40 lbs in one summer and became a walking zombie.  That part was AWFUL!!!  I was tired, depressed and really having a difficult time.  It was then that I made a decision that there had to be a better way to live life, even if it meant making some lifestyle changes.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia? 
Yes, Rheumotoid Arthritis.  In all honesty, I really don’t think about which one is worse, which impacts the other, etc.  When I’m having a bad day, I’m just having a bad day.  I try not to dwell too much on it as I find that when I do focus more on how bad I feel, it can lead to more bad days.

What (if anything) have you found/ done that has improved your symptoms? 
Staying active and choosing to eat healthier foods.  When I began eating better, I noticed that I felt better.  When I would choose to go back to certain items, I would experience pain and discomfort.  Some things just aren’t worth it!

What foods did you find affected you the most?
I found that my body does not like processed foods and fast foods as well as some other things like potatoes and pasta.  It was really a trial and error experiment.  I would journal the food I ate and then would note how I felt.  After a while of journaling, I came up with a list of things that seemed to cause inflammation for me.  It's been almost 2 years since I've had a fast food burger.  NOT worth it!  I'll make a burger here at home that tastes way better and better for me.

How open are you with friends & family about your illness & symptoms?
I’m open about it but I don’t make it a focus point.  It’s only one component of who I really am.  If someone asks about it, I’m open.

Do you blog about your illness?  If so, what inspired you to do so?  Occasionally I do and I do so because I want folks to know that they can overcome Fibro.  As I mentioned before, Fibro is only one component of who I am.  I’ve chosen to overcome it and not allow defeat.  I know all too well how dark of a place you can go if you allow it.

What is the best advice you've received regarding Fibromyalgia? 
Listen to your body.  If you need to rest, do so.  And, Live in the moment.  You only get one life, enjoy it!
What was the worst advice that you followed? 
Listening to my Dr and taking the meds he gave me.  It wasn’t long after that I found a new Dr who had a different approach and helped me make some great strides towards better health.

What is your favorite way to cope with your life as a spoonie?
Resting when I need too.  I set aside “me” time each day and in fact, many a Sunday, you won’t catch me out doing things but instead I’m at home, in my PJs, resting, watching Hallmark Movies.

What is one thing you've learned about yourself since your diagnosis? 
I am one strong chick!  God has graced me with both RA & Fibro so that I can help others in the same situation.  I am doing His work each time I work with one of my clients to help them better their health. I don’t look at it as a punishment but rather with honor.

Now that you've gotten to know Laura a bit, be sure to check out her blog at  exercise2day.com and follow her on Facebook and Twitter.
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