Category Archives: Fibromyalgia

This time last year, I left this post unpublished…

Jan. 26, 2014

Good news = This winter has not been as unhealthy as last year. Last year I was in bed for most of the winter, experiencing intense and daily pain, incredible fatigue and a sense that it would never end. This year, I am able to function most days. I have not had the pervasive fatigue and pain. While I have some very serious ups and downs, I am so incredibly thankful that it is not as all-consuming as it was last year. I have to be very careful that I don’t overdo it for too long. I revel in my good days. I seriously do too much on those rare days but for most of this season, I have days I get up, I teach school, make meals and function.

Bad news = I have had these spells that make me dizzy and cause half of my body to “fall asleep” so much more often than it had been.

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Finding the words

I haven’t written much lately. You may have noticed. I’ve had trouble finding words. That’s not normal for me.

While I am super stoked that I made it through the winter and pretty much accomplished my goal of not complaining about the weather ALL WINTER. Woo hoo! I never promised a Spring complaint fast…but I’ve been doing well. Caught myself once or twice. But seriously, it doesn’t help to complain so I swallowed it. You know what? I think it made it feel like the cold weather passed more quickly. Also, I didn’t look at the tropical pictures people like to torture others with. That helped too. I especially am NOT Looking at them this week. It helps me not complain ūüôā Of course I had to torture others last year when we went to Jamaica, so all is fair in love and holidays.

While this winter was, by a thousand miles, better than last winter it was another kind of painful for us. Last winter (2012-13) was a long and dreadful winter filled with pain and fatigue that I have NEVER experienced the like of before. I spent days, weeks and months begging God to take away my pain and to allow me to get back to “normal”. My normal is a healthy person’s sick day. God has been so amazing in giving me the strength for many years. I wonder, at times, if I went so hard for so long that my body just up and had to have a reboot. I entertained thoughts I had never thought I would¬†let jump around in my head. When your body is that rebellious your head starts to think crazy thoughts.

I am thankful that I had family and friends who put up with the nutty talk and prayed me through it. The Reverend still has a little PTSD from how hard it was for him. On my bad days, this winter, he had the look of sheer terror in his eyes. I know that he was a super hero and got this family through some of the most difficult times we’ve¬†faced. On those days he wondered if this time it (my inability to deal with life) was back again. I’m thankful to say that, for the most part, those days lasted only a few days at most. It was never as intense as it was before.

This winter was different. Oh man, how thankful I am for that! I can truly say that God has allowed me to see a bit of the normalcy back, though I am far from what I used to be, even still. I think part of it is that he worked on my heart so much that I just am NOT the same as I used to be. None of us are. The “Bad Winter” was a changing time for me spiritually, physically and mentally. I cut out food that was making my body more stressed than it had to be. I started running (OH MY WHAT¬†A MIRACLE!!). I had friends urge me to think outside of my spiritual box that I had put God in. God worked through it all. Wow!

I am healthier in so many ways.

But…then there is a different sort of pain.

The pain that people in ministry are not supposed to talk of. The type other people cause.

I had a feeling that something was coming. Call my weird but it’s true.

The church we are in has been so amazing and so full of grace for us as a family. We were growing, thriving, excited. I felt like we were on the cusp of something amazing for our little community. I still do. I think God is up to something. But that makes Satan (and yes, I think he’s working hard) upset. When the people of God are on fire and full of purpose¬†there is sure to be backlash. He doesn’t want people to be victorious. He doesn’t want people to be SAVED. He doesn’t like people to feel the love of the Father for his created.

And there has been backlash.

And that’s all I can say. It’s been tough in ways I can’t speak of.

I know that the battle is NOT lost. I know that there are incredible things happening in people’s’ hearts around this place. If the battle is this fierce, then it must be something crazy good. I see the seedlings of something.

Just wait. It’s going to happen!

 

 

Ehlers-Danlos Syndrome

Just what is that strange word I put up there in my title? It may be the answer that I have been¬†looking for all these years. It may be the “thing” that will make my life make more sense. The “Aha” in the mystery of what has happened in my body all my LIFE. The answer to the Fibro and CFS that I’ve endured for decades at an ever-worsening rate. It may be the answer to “WHY?”

“Why are my fingers so crooked, Mom?” I would ask. “I don’t know, dear, it’s just how you were born.” I may have shown off my incredibly flexible joints at that time because those fingers, as crooked as they are could move into contortions that would make some feel nauseous. the rest of my body is and was hyper flexible from the very start.

“I have these shooting pains that happen randomly through my body, Mom. What is that? Is that normal?” She would typically reply. “I don’t know, but it could just be your mind playing tricks with your body.”

“Dr. why am I losing so many babies? Is there something wrong with my body?” The Dr.’s answers went something like this: “We have run all the tests to see why these miscarriages are happening to you and we see nothing to be alarmed about. Maybe it’s just your body’s way of getting rid of embryos that have something wrong with them.” After losing Josiah and then three more pregnancies, the Doctors remained stumped as to why I was not able to carry a baby to term. They just couldn’t find a reason.

“Why do I have several organs that are malformed and not working like they should?” Shoulder shrug.

“I am just so tired all the time and feel like I just can’t function. My body hurts so badly sometimes I want to scream.” Doctors would imply “It’s all in your mind.” or say “We are diagnosing you with Fibromyalgia because of the chronic pain and Chronic Fatigue Syndrome because of your fatigue.” And then just give me a list of things I could try that may or may not work.

Finally, after years of suffering I think I had someone has given me a lead into what could very well be the answer!

Ehlers-Danlos Syndrome. A rare genetic condition that my cousin was diagnosed with a few years back. It usually runs in families and she was kind enough to send me links of information that I could gape at. I gaped because it described what I thought was quirks and deformities and odd qualities about myself and made it make sense. It was an “Aha!!” Moment. I am convinced that this syndrome is actually why things in my life have been painful, strange, and tiring since the beginning of my memories. All my life, I have felt that much of my pain was all in my head. When I would get sick, it was in my head. I felt like I had to explain that what I wasn’t just faking and that it wasn’t all in my mind.

Ehlers-Danlos Syndrome has some specific characteristics. There are a few different types of the syndrome and so the symptoms vary some from person to person, but there are more common symptoms which are taken by observation and put on a scale to narrow down the possibility of having it. Genetic testing can be done and I¬†have been referred ¬†to a specialist. I’ve waited a good long time and hope our health system can show me a favor by getting me in after waiting more than a year.

There is a test called the Beighton Scale, is a list to verify hypermobility of joints. It is said that if you can do a certain criteria of hyper flexible moves then you are officially at risk for Ehlers-Danlos syndrome. It is one of the main criteria for diagnosing Ehlers-Danlos Syndrome. I’ve done the scale myself and find myself¬†with the score ¬†of “Um Yah, you have this genetic condition.”

There are SO many of my symptoms that didn’t make sense before and now make sense that I am not even doubting, before genetic testing, that my¬†ancestors handed down this lovely syndrome for me to enjoy and call “Fibromyalgia”. It helps make my life, my pregnancy losses and other things make sense right down to my crooked fingers and velvety skin! ūüôā

Why is this important to know at this stage in my life? Well, it helps me know that I haven’t been crazy,¬† with all these things going on in my body. It wasn’t all in my mind. It wasn’t because I was an emotional mess. It is just¬†that I have a genetic reason for it. My body was created in this way.¬†It helps Dr’s know how to treat me and to know that there are certain things they should look at when I come in with a list of symptoms. This genetic condition messes with the production of collagen in my¬†body and collagen is in every cell. It can affect many areas of the body in the organs, connective tissues and¬†on.

Knowing that this is the Genetic Syndrome that has probably been with me all my life doesn’t make me freak out. In fact, it’s the opposite. I feel at peace. I was created and born for a purpose. God knew this long before I did. He knows my limitations because he allowed me to be born with them. He is in control.

frazzle be dazzle

I almost promised myself not to blog a rant of any kind ever again. I get flak about those posts more than any other. It shows my ungodliness something awful! It shows how far behind in the process of knowing God I actually am. I’m pretty sure the closer you get to God the less rant-y stuff you have to say. Then again, there is Jeremiah who ranted for God all over the place.

I am frazzled. Stick a fork in me because this pork roast is DONE. I’ve said it before, I know. This time of year is probably the most unkind to my mind and body by a long shot. I see the weather changing. I feel it in my bones. No, honest, I really feel it in my bones. It’s not just a saying. It’s for real! Scary thing is, it’s not even snowing yet. The world around me is getting ready for it, though.

A distraction from the pain, for me, is seeing the post-harvest prairies which have turned a fiery yellow. The whole landscape is filled with the trees which have come alive with a blazing glory. The harvested fields turn a type of gold. I think God attempts to burn our retinas just a little with the color so we are relieved to see white after a time. There is nothing like the delicate beauty of the first snow. I am preparing my positivity now. My thankful meter. It works!

I was walking today, out in the beautiful autumn sunshine, reminding myself to soak it in. All of the sudden it hit me. I want¬†the Joy of the Lord to shine¬†and warm me¬†from the inside out. I am ready to stop complaining about my pain and start being warmed from the deepest part of me so that the light of Christ warms those around me. The external temperature is just that…outside of me. I can’t control it but I can let the glow of Christ’s love change my outlook.

Matthew 5:16

In the same way, let your good deeds shine out for all to see, so that everyone will praise your heavenly Father.

Job 33:28

 He redeemed my soul from going down to the pit, and I will live to enjoy the light. 

Matthew 5:13-15
“You are the salt of the earth. But if the salt loses its saltiness, how can it be made salty again? It is no longer good for anything, except to be thrown out and trampled by men. 14 “You are the light of the world. A city on a hill cannot be hidden. 15 Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. 16 In the same way, let your light shine before men, that they may see your good deeds and praise your Father in heaven..’

Running with Pain, Part 2

I have had a pretty decent summer with pain levels. Yes, I’ve had pain, but the intensity has not been unbearable most times. That all changed this week.

I believe it is a combination of things, but it’s all guesswork, really. I think it’s allergies, stress (think home school¬†start-up, Aspie kid adjusting, getting programming for my other gal with challenges and meetings, etc…) and peri-menopause. It’s kicking me in the rear.

Migraines are NO FUN at all. Even when you are laying in a room with blinds drawn and earplugs in (for the noise issues) there is still cloying pain. It is close to unbearable except that life goes on. Any mom who knows the chaos of children would give a front tooth for a dark room without noise. This I know. Except those that have migraines. Those people know they would give up a set of teeth to never have another pain in the head again. It’s disruptive to everyone.

“Shhh. Be quiet. Mommy’s got a headache.”

“Can you stop moving? I can’t focus on anything when you are moving like that in my general area.”

“Kids, can you stop being kids for this week because what you do as children makes my headache worse.”

Running hasn’t happened either. I tried on Monday, but then I collapsed with defeat on someone’s lawn. It was a beautiful moment as I looked up into the sky through the trees. I was reminded why I was running. To point to the One who made me.

I have felt the pressure build as I stumble through the week and the 5k gets closer. I pray and I hope that the pain subsides. I have prepared¬†for this for months (obviously, because I won’t stop talking about it). It would be a kicker if my pain won in the end.

I will NOT. LET. THAT. HAPPEN!

More importantly, I believe that God will give me the strength I need to get to the goal.

Running with pain. Well, it is a given that pain will be there. It’s just how much can a person take? I guess I’ll find out this weekend.

As a fabulous aside, I have now been able to raise $530 for CAUSE Canada and feel fantastic about that!¬† I had a goal of $1000 so if you want to help me reach that by Sunday, then please go to my donation page here. I may even attempt a backflip for that. No, I won’t don’t worry Mom!

Thank you to all that have helped raise money for CAUSE Canada so far!  You have made a difference in lives who would not have a chance without you.

 

Running with Pain

English: Female Jogger on Coleman Avenue in Mo...

English: Female Jogger on Coleman Avenue in Morro Bay, CA (Photo credit: Wikipedia)

Gasping, shuffling, puffing and looking at my watch to see that only a few seconds had passed since I had last checked, I kept jogging badly until the one minute mark hit. Walking with a slight limp, I gratefully hoarded air into my lungs and cringed when I saw that I only had three minutes left to walk before my next minute of jogging.

These were the first few weeks, that felt like years, of my foray into the world of jogging. I had made the commitment to “run” in a 5km¬† in September and I had only¬†four months to prepare. The snow had just cleared off of the road and I pushed myself out the door, mentally kicking and screaming. Pain and fatigue had pushed me into such a tight corner that I desperately fought back by training for a run. Never, ever in my life had I imagined myself in such a spot.

The Couch to 5K program typically takes 9 weeks to complete. I took all four months. I still have a week left in the “program” before I technically complete it. I have nine days until I run the race.

I didn’t realize how mental the game of running is until I came to a point where the program pushed me to run eight minutes. I was pretty sure I couldn’t do it. Then again, I thought to myself, I had just run five minutes consecutively a few days before. Eight minutes were not even double that so I think I can do this. My brain changed during that run. When I wanted to quit, I told myself “I can do this …it’s only 3 minutes more”.¬†As I ran, I avoided looking at the time. When I finally did, I realized that I had already done five minutes. Surely I could do three more!¬†I dragged my feet on the ground, hardly able to lift them, but lift them I did. After that, it got easier to convince myself that I could do it! It was a miracle, really. If I couldn’t do the full-time I just kept trying, week after week, until my body said “YES!!”

With Fibro/Chronic Fatigue/arthritis, I couldn’t do it some days even if my mind was saying I wanted to. There were a few days I just couldn’t. I decided that even if I just walked or got out a bit, that was better than nothing. If I really couldn’t even get out of the door¬†I let myself off for the day and knew I’d get back at it when I could. I let myself go from the guilt I usually place on myself when I “fail”. I determined that God was at work¬†and I would be a willing vessel, so to speak. I would not quit this time.

The miracle of movement and energy has been overwhelming¬†this summer.¬†As time and training¬†has passed I have been so thankful that my energy levels have gone way up. That’s not to say I don’t have my bad days anymore, but ¬†I am able to do much more than I could just six months ago. I feel like I have a long way to go, but looking back it’s been¬† a hike already.

I have had incredible support throughout this summer with my attempts at running. My dear man, bless his heart, thought that I should do something besides running when I told him what I was going to do. After seeing me get out the door and make some progress he changed his tune and expressed that he was impressed¬†with how I was coming along. My mom, sweet lady that she is, thought I should do something less dramatic when I told her I was going to do this crazy thing called running. She, as well as my dad, became my biggest encourager¬†as well. The list goes on with the people who have cheered me on and it has kept me going. God works through the words of his people, I tell ya! I don’t know if I have ever felt that kind of support before. I consider many of my friends and family encouraging but in this difficult task I didn’t know I needed the words of support until I had people express them to me.

In a little over a week the official “run” will be over. I have thought about what I will do to keep up the momentum and not fall back on old habits. I only know how easy it is to hibernate and not move at all during the winter months. I have formulated some ideas to keep me going. I may just surprise myself again. You never know.

How about you? What are you going to do to keep moving this winter? I live nowhere near a gym or exercise facility. I never have liked exercising in my home but know I will have to do something. How about you give me some ideas?

Next time, I’m going to give away the secrets I found out that worked to help me be successful in training while living with chronic pain.

To Write or Not to Write?

Mainstreet Canmore

Mainstreet Canmore (Photo credit: Wikipedia)

I am not a published author yet. I am only a grade 12 grad with a two years in college to my credit. I really don’t know the technicalities of writing and yet I LOVE it!¬† I love writing, I think it’s my new calling (by God) ¬†in life and I find myself drawn to it like a butterfly to a colorful flower. My blogs have¬†been a source of learning the art and¬†growing in the love of writing.

I wonder, is it worth my time learning and hoping that eventually I can say something that will change lives through my writing? Am I too optimistic that I can publish something that God will use to his glory?

I feel driven, as driven as a golf ball on the right side of the club, belonging to Tiger Woods. I’m sure the balls that he drives have a great trip while they are on their way to their destination but don’t know exactly if they will hit the mark until they get there.

Part of the question is, why would my words make any difference in this world? Why would anyone want to hear my story? I know I have several stories to tell and of them I am eager to share.

I suppose I am nervous about how bad my writing technique will be and if I’ll ever actually get them done?

I am looking at my writing projects as I am of my foray into jogging this summer. I didn’t know¬†if I would be able to do it. I saw that maybe, just maybe even though my physical body was so weak and the task so large, God was right there with me walking those first laborious 3 Km. After that discouraging and painful walk, he still gave me the dream to jog the 5K in Canmore. Little by little, minute my minute, pain by excruciating pain, I have come farther than I thought was possible. In fact, a few short months ago I knew…I (thought I) KNEW that for¬†me, running 5k would never be possible. And yet, here we are and I am jogging 5K already in 25 minutes, which is a decent pace for anyone let alone ME who thought it was highly unlikely. Glory be to God!!

Back to writing. If I look at becoming an author as something that is  definitely possible, instead of thinking that it is a highly unlikely event, then maybe I will start getting somewhere, little by little, article by article and book by book. That last part makes me super excited!!

Writing is a little like running. It takes a vision, passion, learning the right techniques and then doing everything you can to make it possible (like the right equipment and knowledge) oh and it takes¬†a lot of¬†discipline. Even when you don’t feel like it, it¬†is necessary to keep on going.

It is a steep learning curve but I intend it to be the next big thing I conquer…that is after I run my 5K in Canmore, raise $1000 for Cause Kids and actually survive it.

Remember, if you want to contribute to Cause Kids then there is the link to my pledge page. cause-kids-logo-sm