Friday, December 6, 2013

We Dont Need Permission to Voice Our Pain!

I dont know about you but I have long since struggled with the "acceptance" part of my condition. I mistakenly thought accepting it would somehow cement the fact that I was weak, less capable, less important or just "not normal". That if I accepted it all of a sudden a right light would be shining on me and everyone would know I am no longer the person I used to be, or I can no longer do all the things i used to do. Well as you may also have also seen in an earlier post (one of my favorites) I came to terms with that aspect. As I hope everyone does at some point.
 But, and this is a very big but, part of me has still been off. I talk to myself, I question myself and its taken me a while to figure out. But I have waiting for permission to be sick. I have been waiting to hear from a mystical unicorn that its ok to be sick, tired and angry. That its okay to sleep, cry or go slow. I needed some ONE to listen to my ramblings without judgment, and since I don't/didn't think it's truly possible NOT to be judged I have always been holding back my thoughts feelings and pain...just a little, while I wait. Wait for something I don't even think can happen, so I have been left perpetually feeling vexed.
 I have exhausted every avenue, done everything I was told, researched until my eyes bleed, exercise, eat right, try everything under the sun to manage and even accepted, fight or give into my body,  and still feel something is not required further investigation.

My investigation has lead me to my epiphany, that I am looking for permission. Permission to say and feel everything I have been holding back. I talked to myself in the car for a very long time and said all the things I would NEVER dare to say out loud (for various reasons) and it felt great. The world did not end. No one fired me. No one judged me. I was not asked for a divorce. No one died.
I thought OH HELL if I heard this from any normal person I would gently suggest they seek immediate counseling. But  pain changes people. A chronic pain patient can say these things and I would never suggest they were crazy. I would break down and sob because I knew exactly they feel. If we want to get through it, over it or around it we have to VOICE the good, the bad AND the ugly.

If you have ever thought anything similar and were to afraid to say it outloud you might want to try it. Even if no one ever hears it you have every right to think and feel it. No matter how crazy. You know it may be temporary, not true of your everyday nature and you may feel guilty about it but know YOU CANNOT be the only one. And if there is one (me) there is more. And if there is more, its NORMAL!!
It doesn't make you a bad person!!! It makes you human.
So although I love life, my family and friends of course there will times when I dont! Of course! Are you kidding me?! Chronic pain changes EVERYTHING!
That old saying "Pain is Temporary" was not meant for those of us who's pain NEVER, EVER goes away.

It is not temporary when your insides feel like they have swallowed all the pain, from all the souls in, all the world.

No one can tell you what an appropriate response is to that kind of life. 

I don't need permission!This is how I can feel on any given day and I HAVE THAT RIGHT!
Judge me or relate.
On my bad days....
I wish I had no kids. I wish I never had to take care of  anyone at all ever! I resent getting up everyday to pack a lunch. I wish they could put themselves on and off the bus. I wish I had a nanny to do everything for me .
 I just want be left alone. Left to eat or sleep or cry at my whim. Never work, never workout. I pray God will give me a new body. Then I pray someone would die and miraculously switch places with me so I can live out the next 50 years in a "real" body.
I wish my husband would just go to work and never come home. I don't want the guilt of not being a good enough wife. It wouldn't matter if I cleaned or cooked. I wouldn't have to go places I don't want to go, or even be intimate when I am never in the mood anyway. He'd be better off. I wish my friends would go away because they are useless anyway. They aren't there when I need it and they can never understand what I'm going through. 
I wish I was dead. I wish I could disappear. No one cares about my constant complaining anyway.
Sometimes I dont take a shower for days, even weeks,  because I'm too depressed to take care of myself. Sometimes I only do the birdbath because it hurts too much to climb over the tub wall.
I only get dressed up for things so no one things of me as "SICK" when they see me.
or I dont really care to be dressed up all. What the for? Maybe if I look like crap someone will know by the outside how bad I feel on the inside and I'll get some freekin sympathy!
 Rain hurts, clothes hurt, stress hurts, noise hurts, working, smells and washing my hair hurts. Even resting hurts! 
And I dont know how anyone can have pain and despair for the future and still be living.

So again, even when I am generally a positive person, trying to encourage others, and being my own cheerleader OF course there are days when I want to say "F%*@K YOU" to life! F you to health insurance, F you to the doctors office, F you to pain, the dog, the mailman, the tv and anyone else a very BIG F YOU to everyone who asks if I've gotten any better!  Just yell it out, let go and move on And if you need to do the same, go right ahead!  I would not judge you!! EVER!! Because you DON'T NEED PERMISSION!! You earned it by getting up every morning and putting that foot on the floor! 

Monday, December 2, 2013

Awareness Bling

Just some shout outs!!! 
Go check them out and tell 'em who sent ya!

Shades of Awareness Jewelry
Sterling Silver Lyme Disease, Babesia, Celiac Disease Awareness Charm Bead, European Style

Amy's Awareness Jewelry

Sterling Silver Autism Necklace

Jewelry by Pam

 Ehlers Danlos Syndrome w/ charm


Rebekah's Pure Living Products

A long overdue recommendation!! 
Rebekah's Pure Living!

Rebekah's is a family owned business that cares about your health. They are improving the lives of clients that want to take control of their own health. They provide superior customer service while offering high quality, hard to find products. They are located in Lapeer, MI. They also offer free shipping on all orders within the US. Here are some of Rebeka's products that you may find useful. Here are some stories of happy customers,


Four Kings by Dragon Herb
For those especially who wish to fortify their immune systems

Thyroid Energy
NOW® Thyroid Energy™ is a complete nutritional supplement for the support of healthy thyroid function.  NOW® has combined Iodine (from Kelp) and Tyrosine, the two integral constituents of thyroid hormone, with the minerals Selenium, Zinc and Copper, to assist in its production.  In addition, NOW® Thyroid Energy™ contains Guggul Extract, an Ayurvedic herb known for its ability to support a healthy metabolism.*

Constipation Stop by Renew Life
Potent Herbal Laxative Formula for Relief of Occasional Constipation

Ocean Energy (B-12)
LifeGive™ Ocean Energy B-12 is bacteria formed from Saccharomyces Cerevisae.  This is the best known vegan source of Vitamin B-12


Healing Bath Salts

Milk Thistle
Milk Thistle is considered by many herbalists to be the primary herb for liver health. The active components in Milk Thistle are its flavonoids collectively called silymarin; and the majority of Milk Thistle-related research has been conducted on this component. Silymarin has long been recognized for its ability to promote healthy liver function in a variety of circumstances. 

Rebekah's Candida Clear
These synergistic ingredients help to support a healthy balance of intestinal bacteria.  Candida is the beneficial bacteria that normally populates the gut; assisting in the digestion of food, production of vitamins and detoxification processes.

Organic Bowel Cleanse

Tuesday, November 26, 2013

Im "Published"..well sort of...

I am so excited to share that I had a wonderful opportunity to be part of a book Fibromyalgia Journeys, A Collection: Stories of Courage and Personal Triumph.
My contribution is titled "Never Give Up". I have just one story among many that have messages of hope, pain and understanding. It was written by Shelly Bolton who was featured in Fibro Daily if you want to read her story. This is her second book. The first being Fibromyalgia: A Guide to Understanding the Journey.

Both are available for kindle (or kindle app on your device) for a very small fee, but of course I would love you to read what I wrote and let me know what you think. For those of you who may not know, Amazon allows you to post reviews if you have an  account with them (meaning you have purchased something through amazon at some point) but it isn't not required that a person purchase the item they want to review. It is very helpful if you leave a review.  I am told the paperback will be available soon as well and I will update on that when I receive the go ahead.
I have to say it is very scary to put yourself out there for entire world, whether its blogging, websites, Facebook or support groups but when you see someone that can be helped, its all worth it. When you can inspire someone its even better. I did not hesitate to share my story because I know if just one person can understand what we go through as a result of Shelly's hard work then I can take SOME credit for helping to raise awareness. 

Thank You Shelly for the opportunity!

Here is one review form Amazon
"As a person who has struggled with Fibromyalgia for over 17 years, I must say that I have read many books on the subject. This book is so different and for that I am thankful. These are real people with real stories living with Fibromyalgia. None of their journeys are the same but they all share a solidarity, which Shelly Bolton has so beautifully woven together. I was sobbing by page two of the first story. I forget how isolating this horrid illness can be until I read words from a page that so clearly illustrate my own deep feelings both emotionally and physically. Sometimes the reading is hard because it is so relatable and pulls at your deepest heart strings. At other times, parts are funny and many times hope filled. If you have been diagnosed with Fibromyalgia recently or twenty years ago, be kind to yourself and purchase this book. You will not regret it. Regardless of how long a person has lived with Fibromyalgia, it is always, always comforting to feel validated and to be reminded we are in this together."

So go to Amazon and download here for more stories of hope and know you are not going though this alone!!

Wednesday, November 20, 2013

Why Do You Blog?

I blog because in some way I find it therapeutic to write down what I'm going through. It helps me process through it and be able to know that putting it out there for the world makes it very real, and whatever it is I have to face it and be accountable. I also do it because I know somewhere there is someone going through the same thing I am. I don't do it to brag, complain, or even pretend to be an expert on anything. I do it so if someone feels the same way I happen to feel, they know they are not alone. And sometimes that can make all the difference between a good day and a bad day.  I have read a post that says "I know it hurts" and teared up.  When I see the words "no one can motivate you but you" I get a little more hopeful. When There is a picture of a person slumped over and it says "don't give up"..well..I decide that day I won't pack it in.
I dont know the people personally on the pages and blogs that I follow but you read the struggle and follow for months or years what they have to say you feel like you are invested in their health. You want to know if things work, you feel badly when they are having a awful time of it. And i think these connections are what keep us going, despite all that we have to deal with.

There is a reason why people start support groups and organizations. Its so people can be in the company of others who are going through the same thing. Feeling LESS alone is critical to healing in my opinion. When you are in pain, or struggling mentally, even feeling depressed, it can be greatly  amplified by the fact you feel alone. And conversely it can diminish those feelings just enough to know you may make it through another day.

Jan Fears Says:
"I blog b/c I can connect w/others with my same sufferings. The Drs do NOT seem to truly understand how deeply these diseases affect us. Mentally, physically & emotionally. We are so depressed at times that we honestly want to die. I can only speak for myself on these matters. Pain is an evil thing that works on you 24/7 even tho I take 5 different pain meds, I still cry with pain. I have withdrawn from living that I rarely leave the house. I have to leave to go to Dr appointments for pain meds, I try to go to a store on that day or get my hair cut so I don't go out again. I don't have any friends outside of FB bloggers. My Husband does all the shopping & cleaning for us. 

I had to move to the 'Guest Bedroom' b/c of my lack of ability to sleep & me not being able to be touched when I do 'cat nap' . My skin feels like it is bruised ALL the time, so when I get bumped or touched it feels like I get hit. When I get my B/P taken at the Drs office, I have tears rolling down my face B/C of the pain. When I swell & the Dr mashes his thumb on my leg, checking the swelling, tears roll due to the pain. The Dr says he is sorry, but I don't think he truly understands how much pain I am in. I have fibromyalgia, Sjogrens & Osteo Arthritis that cause my pain. I'm only 59 but I feel over 100! With us exchanging how we feel, how we deal with pains, how we handle our lives we learn how to live better w/all of our afflictions. 
Mentally, going day to day in pain, your attitude towards life changes. Your way of thinking changes. Everything changes! The way I dress, looser clothes b/c tight or fitted clothes hurt me. I thought I was having a heart attack one time - no, just chest muscles aching b/c I was dressed with a bra on all week. I can't wear "going off" clothes every day - ya know the standard tee shirt & jeans.
To walk around I use a cane. I do this because my feet, ankles & knees are unsteady."

Terrie Smith Freeman Says:

I blog for the support and comprehension of others who have walked a mile in these shoes." 

So please share with me why you blog and feel free to include a link to your site :) 

We are all in this together!

Sunday, November 10, 2013

AcuMed Magnetic Patches

I do not recommend products lightly. I have used these as well as friends and my husband and we all feel the same, that they are helpful. They are a great alternative to popping more advil or tylenol. They give varying degrees of relief and can decrease pain which can also help restore some range of movement. They have been particularly beneficial to me after a race, or during a flare. Sometimes it takes 2, a few hours and other times it takes 4 an entire day depending on my pain level, but they have yet to disappoint me. With that said I am able to offer a discount to anyone interested in trying. I hope you do! 

If you would like to receive a 10% discount on AcuMed Magnetic Patches please follow these steps before you place your first order. Steps 1-3 will only have to be completed for the first order. After your first order is placed, you can go straight to Step 4 each time.

Go to and create a new customer account.
Once you have created an account please send an email to from the same address you used to set up your account 
Copy and paste the following into the subject of the email: RunningWith, (Insert Your Full Name), Customer - Discount Request
We will send you a confirmation email once we approve your account to receive discounts. The email will be from AcuMed with the subject: Customer Discount Request Approved and Completed. Please allow us up to 3 business days to send you your approval.
You are now ready to place an order! Follow the steps below to ensure that you receive a discount.via your organization. Do not place an order by any other means, doing so will result in you not getting a discount.
Click on the following link:
Click on the “Buy Now” button and place the desired amount of boxes in the “Qty” field.
Begin the checkout process by clicking the “Checkout” button in the pop-up window.
Log in as a “Returning Customer” by entering your email and password and clicking on the “Login & Checkout” button.
Enter your billing and shipping information as necessary. Your discount will be reflected in the “Your Order” section of the final checkout page. If you do not see your discount, please contact us prior to completing your purchase. If you do see your discount click “Place Order” and your done!

Thursday, November 7, 2013

Never underestimate the power of stress!

Never underestimate the power of 

 I have seen first hand how I have become crippled by stress, unable to focus, increased pain, and nearly bedridden for weeks at a time. I have lost and gained weight. I have alienated people and lost all interest in things. I have even seen a decline in cognitive skills when stress had been at all time high. Recently the fibro symptoms have been getting worse. Because I have been exercising and eating right, I of course blame the changing of the seasons because, as we know, for many of us winter is the WORST. The cold kills me.

I dispute anyone who tries to debunk that fact, and PLEAD for more research to be done in that area!

Well,  I have just relieved myself of a stressful situation recently, and at first thought it I was just doing something good to relieve my intellectual battles. I was very aware that the constant state of frustration was making me crazy.  But I noticed today as I became empowered to take a trip to NH (I'm in Mass) and visit an old friend, had the energy to do dishes and some other housework and organizing...that I just felt great. Better.  I felt 20 pounds lighter and like a great burden had been lifted. 

The slowly increasing pain I've been having in my neck, the headache I have had for 5 weeks, and the jaw clenching....gone.
Albeit it may come back for other reasons, such is the nature of Fibro and CFS. But it was slowly taking its toll on my body, and I did not even notice.It was not enough to be a direct slap in the face or cripple me on the couch..but it was slowly sucking the life out of me. I was moving slower and slower, feeling older and weaker.
When I said 2 days ago "I'm done"....Poof! Gone!
Like magic!
Stress kills, cripples, changes who are and who you can be. Find ways to avoid it, relieve it, remove and reduce it from your daily life. It will only make you worse and I know you do not want to feel worse. Some of us really cannot carry any more on our shoulders than we already do. 

Hang in there! 
Much Love 

Wednesday, October 23, 2013

My Five Fibro Stress Busters

How I hate thee. Let me count the ways..
 For those of us with chronic pain stress can cause more debilitating pain than the everyday pain we already experience. 
I am not an expert, but I have found some key things to do that if done on a regular basis can help to reduce the amount of stress we encounter. Some stress in unavoidable no matter how hard you try and that’s where you need to develop some coping skills so you don’t end up in the bed for days at a time.  Ill touch on that later.

If you believe most of what you see, just stop completely. Everything is going to kill. You can’t eat anything or take anything without suffering serious consequences down the road. You will suspect that quiet neighbor or having someone locked in the basement and you will fear for entire state of the world if you try to keep up with current events. If you have a pretty good filter then LIMIT the exposure to the news. Instead of everyday, do midweek. Its far better to hear something from a friend at work and “Say wow I didn’t hear that”, and then let it go,  then to see it on the news, talk about it, think and dwell on it and take it with you to bed. We are inundated with bad news and it is very depressing. Even if you are unaware it can hang around there in the back of your psyche telling you what a sad state we are in. Children shooting teachers, health insurance and unemployment, cancer rates, the economy, hurricanes, overpopulation, chemicals and on and on and on…Enough already right? Lets dial back the crazy!

Friends and relatives. Are they helping you up or pulling you down? Same as with the news….LIMIT your exposure to the “suckers”. I call them suckers because they drain you of everything you need. Energy, patience, dignity, sanity, and worst of all time. We don’t have a lot of time to throw it away on people who are unaware of how their constant demands or complaining can suck the life out of us. You don’t have to cut everyone off but take a serious inventory of how you feel mentally, emotionally and physically after you spend time with people and see who is a trigger for pain, or depression, headaches or fatigue. Let them know when you get together it can’t be 2 hours of complaining about life, parents, work and kids because it’s just not good for your health. Designate 20 minutes to vent about “whatever” then the rest of your time needs to be constructive and positive. Any true friend will understand.
 Now those pesky relatives. Much harder!! I know!  Try the same and then be prepares to stick to it. Take control of your environment. If they don’t honor your wishes you have to give a warning and follow through.
“If we can’t talk about something else, I’m going to have to leave”.
“This is going to stress me out so we need to change the subject”
“I am going to have to hang up if you keep…..but we can try again tomorrow”
“I love you but this is not good for my health and until you understand I cannot……”
“I do want to help you but THIS will make me sick with worry so can you brainstorm with me a different way to help you”
“I don’t want to have you over until you stop making me feel bad about…….”

Not a lot of explanation here. Don’t be the chauffeur and the therapist and the organizer. You cannot be all things to all people. Don’t take on too much for all your various reasons…only do what you head and body can handle. If you stretch yourself too thin you are no good to anyone in the first place. “I would love to but I can’t”.
No one will die if you don’t get the dishes or laundry done. So you make sure you all have clean underwear and forget the rest. If someone really needs something before you get on it, teach them how to load the washer or let them clean their own plate so they can eat. I REPEAT: NO ONE WILL DIE because you told your friend you can’t watch her kids, or you didn’t take out the recycling. Don’t get wrapped up in the baby mama drama, cheating, evictions, or the gossip from the daycare. It’s not good for you! So pace yourself and if you’re struggling, think about how important it really is on a scale from 1-10 and take it from there.
“Slow and steady wins the race”

Fourth: LET IT GO! Learn to let it go. Don’t stay angry or upset. Yes things suck, process it, and sit there in it for a MINUTE, then come up with a plan. If you can’t, then let it go. Come back to it later or get a second opinion. You make yourself sick by LETTING yourself stay in a negative state of thought. Life isn’t always easy but if you can deal with chronic pain you can deal with pretty much anything. Yell, cry or throw something (preferably something soft! No broken cell phones please!) and take that minute. But you have to let it go. You will get the headache, back and neck pain, tightness in the chest and the crinkle in the forehead because you can’t stop thinking about it. Find your Zen, phone a friend, lay in a dark room and imagine your happiest place. You HAVE to learn to let it go because it’s not good for you.

This is an assumption that you have already figured out some if not all of your triggers. I can’t stress enough that YOU have to limit all the things that make you feel bad. If you know you are going to have anxiety in a certain situation avoid it if you can. Some you can’t I know. Don’t skip the job interview or your doctor’s appointments of course. Why? Because, say it with me….THAT'S NOT GOOD FOR YOU! If you can’t avoid them use a coping mechanism.
  • If it’s going someplace new, bring a friend or even two friends. Call ahead and find out when it’s the slow time. Ask questions of a staff member or volunteer to put you at ease when you get there.
  •  If its pain and shopping see if you can bring help, use the motorized cart or hire someone to run the errands. You can even barter with someone. Knit the neighbors kids some hats and mittens and she can grab you some things while she’s out. 
  • See if there are any local stores that can have things delivered.
  • If its food just don’t eat it. Find something else. Sometimes ‘moderation” is not even a choice. For years I felt like junk after drinking beer and I repeatedly said “It’s not a hangover!” Come to find out I have a sensitivity to brewer’s yeast. So after nine months of no beer I had just ONE at a cookout and for 2 days after I paid for it dearly! NO MORE BEER for me.  (And I don’t miss it, never really liked it anyway it was just for social reasons). Just ONE margarita with a few glasses of water I can do with no effects. Two margarita’s and the pain is through the roof. Too much caffeine, pain is through the roof. Chocolate gives me migraines. Doritos’ (before I quit them) gave me a headache and made me fall asleep hard after 15 minutes. Figure it out, once you do modify or stay away. 
  • If your always in pain after sitting in the rocker, move to the couch, bet pillows or pads.

Since I have implemented these AND learned to let go of the guilt associated with it, I have been less stressed and sometimes even laugh at things while other people are stressing out. Not to be disrespectful but I say “There’s nothing you can do so don’t freak out. Take that energy and put it someplace else!”
There are other things you can do and many different ways to do it but you MUST believe that you and your health are important enough to decide to make the changes, and stand your ground. It’s a process and you can have setbacks. Setbacks are okay. Just keep going.


Friday, October 11, 2013

We Are Indefatigable!

How can we not be? We get up every day and take on a challenge the not a lot of people around us can understand. Many would ask to be stranded on the top of Mt Everest in the middle of the winter before they volunteered to take this on. We often complain and we are just in doing so. We are tired all the time. We hurt all the time. We have to keep going even when it truly feels like that is not even an option. Someone asked the other day “How do you explain the fatigue from fibro in contrast to the fatigue from a long day at work?” This was (part of) my answer:
“…when it’s fibro fatigue I want to sell my kids, divorce my husband, and sell my soul to be left alone to lay down and die”

So often we focus on the facts, and the facts are painful. There are a lot of things we can no longer do, or do less often. It has changed the way we eat and sleep. It has changed relationships and job status. Everyday experiences are more stressful, less enjoyable and quite often are avoided. It has changed the way people perceive us and even worse it has changed the way we perceive ourselves. It takes over every molecule of our being so it’s only natural to change along with it.

But the reality is we are stronger than these little bodies try to make us believe. I always call Fibro a cannibal because over the years that's the best way I have found to describe it. It eats away at you from the inside out and even gets you to destroy yourself. But you are MUCH stronger. Muscle weakness shmeakness I say. We are not special because we are ill. 
America is supposed to have the best health care, and by study after study you can clearly see we are the sickest and most unhealthy people anywhere.

How many diseases, syndromes and conditions cause muscle weakness? How many cause unimaginable fatigue? How many change the way we live our lives? How many cause depression anxiety and mind numbing pain? Uuuuummmm a lot! In fact most of them. Even when you see the uber positive, crazy happy people…you all know one at least. They are never pessimistic or negative. The ones who SAY “I didn’t change anything… I am still a great wife, I still work, I still bike and I am kicking this thing in the teeth and I will not be held hostage by this”, well they still have changed. They change what they eat, the medications they take, or treatments they receive.  They change the circle of support they have to incorporate people who are also ill. And yes, that means they have changed. They adapted to the new body and like it or not they reach acceptance with it. You can say you will never accept it or you are still fighting it. I hear it all the time. I did it myself for a long time.
"I have learned nothing
I am not better off
Nothing good came out of this
I am not thankful for any of it
I wish I would die
No one knows what I feel like"

It’s a process, a long ever changing, difficult to master process.
But you did accept it, at least in part. The fact that you looked for answers means you accepted it. Looked for the right doctor, joined support groups and read books on it. You may not be happy about it but you know it’s there and you can’t deny it. But I say we are special, not because we are ill, but because we continue to live with illness. We could lay down and die, take a bunch of pills or  drive that car into the lake. But we don’t. We are indefatigable. 

We wake up everyday and do all over again that which cannot be done. We live every minute with something there seems to be no cure for. We live with people misunderstanding us, judging us, and telling us everything that’s different from what we used to be. We live everyday not knowing what our bodies will do next to betray us next. We live with the side effects and collateral damage. We live. We keep on living. We do anything and everything we can to get through each damned day and we do not rest until these bodies demand we rest, and even then we are NOT happy about it. There is always something else we would rather be doing. ALWAYS! How can that possibly mean we are any less than anyone else? We are not. You are not. I am not. I say it makes us stronger.

This is not a “think positive” speech because either you do, you don’t, or your working on it. But you can train your brain to work with you. To realize you are not less than anyone else. You have adapted to your conditions like the Red Squirrel, Arctic Fish or even us having 5 fingers. Adaptations are to help survive in harsh conditions and that’s what the body is doing. You are tired because your body needs that energy to fight off the invaders! That doesn’t make you lazy! What? You are adapting for crying out loud! Stop thinking of yourself as weak, tired, or incapable! And if you have to fake it till you make it…try this;
  • Instead of saying: I was too tired
  • Say: I chose not to do that today
  • Instead of saying: It hurts too much
  • Say: I’ll try it again later
  • Instead of saying: I can’t
  • Say: I don’t want to right now
  • Instead of saying: That always causes a flare
  • Say: that’s not the best thing for me
  • Instead of saying: I wish it would just go away
  • Say: Someday it will hurt less, I can wait
  • Instead of saying: Why is this happening to me
  • Say: I will learn to listen to my body
  • Instead of saying: No one knows what I feel like
  • Say: There are a lot of people going through the same thing, boy are we strong

Retrain your brain! 
Dum dum dum dum dum...”I pick things and put them down” HA sorry,  I had to.

If all you can do fake it, then fake it!! You know you have already had a lot of practice faking plenty of things like..oh, lets see, do I need to make a list? Naa, Im done with list making for today. But I will leave you with one, The biggest fake out perpetrated by you and everyone with chronic pain and illness..
"I’m  Fine"

So drop the fine and declare that you are adaptable, capable, and Friggin’A you are 

Saturday, September 21, 2013

Make a Small Change. You Will Not Die!!

I have to remind you guys how important it is to take care of these fragile bodies we have. Just like dominoes, when one thing gets unbalanced, so does another and another and before we know it we don't know where to start, what is wrong, or why it is happening. For some it may be walking 15 minutes instead of 10. Others may need to cut back on the coffee or sweets. Some may really need to take 30 minutes to try to learn or perfect meditation. And maybe its more (organic!) fruits and veggies?!

But if you think deeply and honestly for just a few minutes I think you can see one or more places that you can make a little change. A change that may really pay off in the long run.

 YOU wont die with one less trip through the drive thru, or less sugar in your tea. You wont die if you add 2 minutes to your normal exercise or stretching routine.Just try it. Find something. Give it some time and see if it helps. If not, try something else. We cant pick up one random card and expect it to make a full deck but at least you are being proactive. At least it's one step in taking some control back and you have to feel good about that. Being positive is less exhausting than being negative and lets face know you are exhausted enough already! 

Wednesday, August 7, 2013

A Note From Your Trainer

I think i have said this before but being a trainer is a lot like being shrink. I wish I had a degree as a psychologist because I could charge A LOT more per hour. I just have to vent that it irritates me that people don't accept help and do what they are told. If you find it hard refocus and get back at it. Don't whine about the pain, we all have pain. Your human body has no more significance than my body. It all depends on what you put into it what you will get out of it. If you accept you can, then prove it to yourself. Once you see it you believe it.

You can have every and any excuse to have been held back physically, emotionally, intellectually, or spiritually. Weather its parents , friends, abuse, accident or tragedy...there are too many to list. And they are valid most of the time. I accept and understand and don't judge. I have my own demons I am still trying to work out at 41 years old. But I am trying to work them out. I am not sitting around saying it hurts, my mom made this way, I don't have enough money or no one understands me. And I have come very far in my short adult life. And I know if I did not accept responsibility for how my life is GOING, rather than blame others for how it went, I would be sitting in the bed everyday on heavy medication, old bitter and angry. And that is unacceptable to me. If you r doctor, friend, teacher, shrink, boss, neighbor or TRAINER offer help TAKE IT!

If you have been given the opportunity to turn things around in a positive direction, and if you have been offered the information to make significant lasting changes for the better, and you have a chance to move past what has been dragging you down, TAKE IT. And if you don't take it you have no one to blame but yourself. Not many people get that chance and even fewer get it twice. TAKE whats given to you and make the most of this life. You can make a difference.You don't know who is watching. So if someone offers you help don't give excuses, give results.
You are stronger than you think, and can do more than you know.
Or be so kind to let them know ahead of time you are not willing to do the work so they can move on to someone else who needs and wants the help.

Tuesday, July 23, 2013

I Am Fibrotastic!

In my early 20’s I became increasingly more fatigued than I had previously been. My concentration was off. My muscles were sore all the time. I did not sleep well, and felt as though my life was always moving too fast and it took all my energy to keep up with it. I was trying to juggle a small child, college classes on and off, parties with friends on the weekend, and I worked. Sometimes multiple jobs. So when I looked for a reason why I felt the why I did, it was obvious. The stress of being a young single parent and all the responsibilities that come with it was always number one on the list. Working at a health club, babysitting weekend nights and staying up all night were all next in line. I went to counseling to learn how to manage my life and although somewhat helpful, I was told I had Adult ADD, that I was bi-polar, and had manic depressive tendencies. No thanks. I didn't like that but what can I do. They are the doctors right?

 Don't they know best? After trial and error for years with multiple medications, lets face it TONS of medications and lifestyle changes nothing ever really improved. So I gave up.

In my early 30’s when my second child was a year old I came down with meningitis. After this episode I never seemed to fully recover. Widespread body pain and fatigue were ruling my life. Most days I was forcing myself to stay on my feet and get through the day, get chore done and not look weak or lazy. I was now married and had more responsibility and could not figure out why life seemed so unfulfilled. Yet another year later the signs of meningitis reared its ugly head and I was back at the hospital for a second time. Who in the world ever heard of such a thing?! By now I think I am a medical mystery, an anomaly. I am messed up! I began to do less and less of things I enjoyed, became anxious in certain situations, withdrew from friends. I suffered from injuries and winter illnesses that seemed to never want to heal or go away. Headaches and pain were at an all time high. I finally decided something was wrong with me and it must have been the meningitis.

I searched the internet, read books from the library and although I realized I do in fact have ADD, there were too many other possibilities out there for me to diagnose myself with anything. Finally I decided I didn’t know what was wrong with me but I knew changing my diet would be nothing but helpful. I did that and no change really made much of a difference. In between numerous doctors’ appointments with dismissive answers, my in home daycare children, foster children and my own third baby, I ended up having to scale back, and eventually quit everything to just sit home and be sick. I felt like a failure and a loser. I felt weak and ashamed that my body could not keep up with everything my heart wanted to do. I gained weight, lost hope and became very angry. In seeing a Rheumatologist for another injury, he quickly changed his line of questioning, did the tender point test and diagnosed me with Fibromyalgia. I went home searched the internet to find out exactly what that was and then had my greatest A-HA moment in years. I was so  happy to have a diagnosis that validated me. Now I knew what was wrong all these years! I was not crazy! I was not lazy. I was not being a drama queen and I WAS NOT making it up!! Happy happy joy joy!!

Then I cried. For a long time. Like the shower, in the car, in the bed....It seemed I was doomed to a life of pain with no help or cure in sight. The emotional fallout was much greater and complicated than I can ever put into words.  I ended up on disability and just plain miserable.

At 39 I decided to try diet change again but his time be more strict. The information was mostly incomplete and contradictory and the only common denominator I found in hundreds of hours of research was diet. Maybe helped a lot or a little but it was obvious that was a factor. No artificial ingredients, no caffeine, gmo, hfs, etc. and as little processed foods as possible. As clean as I could afford. I even cleaned out the house of chemicals, hair products, tore up carpet you name it. I went all out. This time it made a noticeable difference. Right away I felt like I had a little more energy, and I was less heavy, angry and also has fewer digestive issues. I felt good enough to start running and working out again, where I had done in the past, but then it became too painful. Shortly after, bringing my youngest to preschool I met another mom there who was a doctor. We got a little friendly and after a few of my side handed comments like “I’m always so tired” and “everything hurts” she  said she would love to see me (as a patient) and try to figure out what was going on. I declined for a while. Beside the fact that it had the potential to be awkward, I was suffering from doctor fatigue. I did not want to go through that anguish of hearing “its tendinitis, I have to lose weight, it will go away eventually, or all new moms feel like this”. Eventually winter had destroyed me yet again and I figured what do I have to lose?

She did testing no one had ever done before. I had Fibromyalgia for sure, but also some overlapping Chronic Fatigue Syndrome, I was hypothyroid, and had Adrenal Fatigue. Other side conditions from the high stress and wacky hormones also developed or had become worse, like TMJ, depression and anxiety. Throughout this process I discovered it all led back to the birth of my first child. I had been living with this for an astonishing 22 years, all the while it was getting worse with every stress or trauma. She put on supplements specific to my needs based on those tests and a thyroid medication. I exercised a minimum of 30 minutes a day, 5 days a week. It hurt. It was not easy. But every day I could do a little more and a little more. Sometimes I cried while I ran around the track, other times I yelled at the tv and cursed the maker of the dvd, but my it was helping me. I could see it and feel it. And combined with the healthy diet I felt like a human again. I decided to be in control. If I could not cure it I would mold it. I was in pain anyway, so I decided I would benefit from it by building a stronger body for it to live in. Feeling sore from a workout is mentally and emotionally more empowering than feeling the pain from Fibro itself.

 Although there are “flares” and bad days still, they are happening less and less often. Overall life is much better. I have less pain and less depression. But those days are fewer and fewer. I was able to start working and start a support group. I am running and participating in obstacle course races and feel great most days. I started an organization for people with who suffer with chronic pain who also stay as active. They get together for events, give support, suggestions and share stories of accomplishments. I never would have been able to get any of this done without educating myself, having the support of a good doctor and a supportive family.

My advice to anyone is to know you are you are important. Your life matters. No one will fight for you as hard as you will fight for yourself so do not give up. Keep looking for the right doctor, vitamins, or exercise. Try everything alternative as well as modern. Know it will most likely be a combination of things that help, just as it is a combination of things that are making you ill. It may take months or years but it’s worth it. You have to form a front of every level. Physical, emotional, mental and spiritual so it has no chance but to back down. I know it hurts. I still cry. I still curse the gods. Its okay.