Category archive: Lifestyle
Ehlers-Danlos Syndrome and Exercise – The Impossible Combination?
One of the topics that comes up quite often in my Ehlers-Danlos* groups is exercise. We all know we need it and yet it’s so difficult to start or maintain because of the obvious resulting pain, joint laxity, and POTS symptoms. And yet without it we aren’t helping our joints because we aren’t strengthening the muscles surrounding them and we’re not improving our overall health. I’m right there with my fellow EDSers on this and I’ve been struggling for years trying to find something that works. My one constant companion (although neglected more often than not) throughout these past 30 years has been a Nordic Track machine. It’s a wonderful tool because it provides great cardio with ZERO impact! It’s always been my friend – when I choose not to ignore it. A mistake I’ve always made though was to use it in conjunction with starting a completely new exercise routine including weights and dance-like moves which always leads to soreness, joint pain/problems, and ultimately quitting – usually sooner than later. But a couple of weeks ago I made a conscious effort to start anew and NOT get ahead of myself. I’m using JUST the machine 3 or 4 times a week for 20 minutes a day, I’m drinking 80-100 oz of water a day, and I’ve SLOWLY added some stretching and light isometrics. I haven’t experienced ANY soreness and I certainly don’t feel like quitting. In fact, I’ve always avoided stairs like the plague for decades because of the knee pain and possibility of subluxing, but yesterday I purposefully took the stairs multiple times and I didn’t have ANY problems. And still no backlash today! That alone is such a HUGE accomplishment!! If you don’t suffer from joint hypermobility then you just won’t get the full impact (no pun intended) of that last statement. FYI, because of other health issues I’ve had to revamp my diet and I’ve already been eating grain and soy free for 3 years. That has also contributed greatly to my overall improved health and well-being. I also take 4-6 grams of Vitamin C a day and 400mg of chelated Magnesium and 22 mg of zinc. So can an EDSer find exercises to help pain and joint laxity? After a couple of weeks of skiing at home, I’m inclined to say yes – at least for this bendy girl!
*Visit the EDNF website for more information about Ehlers-Danlos Syndrome
I am NOT a medical professional and I do not intend for my statements to influence anyone to start a diet and exercise routine without proper medical care. Please do your own research, clear things with your medical professionals, and find what works for you.
Why did he lose his job again? They’re all strong in their faith and have been shining examples of what Christians should be. What purpose can this be serving in his family’s life?
Why did she die? She was too young and had so much life in front of her. Her family certainly prayed hard enough. Why didn’t God heal her?
Why did they get divorced? They were a perfect couple. How can this be what God wanted for them?
Pondering these (real) situations today makes me question God’s motives as I’m sure (if you’re honest) you do too. How can a good and loving God allow us to go through this garbage? Doesn’t our faithfulness to him count for just a little bit of favor? So many questions….
Earlier this week I posted a Bible verse on my facebook page: “[Trials and Temptations] Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.” (James 1:2-3 NIV).
Perseverance? Perseverance for what? More trials? It seems like a vicious circle.
But when I quit complaining and airing out my questions and anguish to no one in particular and really dig into that verse and have a conversation with the Lord, I discover something. I discover that God, MY God, the father of our dear savior Jesus Christ, has something for me. He’s got all the answers to all my questions!! But he tells me that if I want to make the tough decisions and have my heart wrenched open 100% of the time, then I could do his job and have the answers too.
His job seems a bit tough to fathom, though. Watching people destroy each other spiritually, emotionally, and physically? Watching people destroy the environment and themselves? Watching a mother grieve a murdered child? Watching a father commit suicide because he feels inadequate for not having employment to support his family? Watching a child suffer abuse and become hardened to love? All these and so much more? And not just singular isolated cases, watching ALL people suffering these things simultaneously all day every day – – 24 hours a day? And not just watching all these things but knowing WHY they are occurring in the first place and having to chose how to interact and discipline and comfort? WHAT??!!!
Um, no thanks! I have a hard enough time dealing with the few trials that come my way along with those of the people I love. If knowing all the answers comes with knowing (and feeling) all the pain and making choices that I know will cause more pain but it’s the right thing to do, then I think I’ll just shut up, and consider it pure joy when I do suffer trials. Those trials produce in me the perseverance to get through this life and make it to the glorious home that awaits me in heaven. It also provides me the strength, wisdom, and empathy to encourage others on the same journey. Our faith WILL be rewarded – we just have to TRUST that God knows the answers and knows why he’s shaping us in this way. And knowing I have a loving father who cares enough about me to NOT tell me all the painful answers – to just embrace me in his arms and quiet my soul – gives me the courage to press on.Details
My day yesterday began by touring the book depository and grassy knoll in Dallas, TX where JFK was assassinated. I tried to absorb the awesome weight of it all while physically being in the presence of those historic places. Admittedly I was having to stretch myself to feel something more than a dutiful sense of remorse as a good American should. I was intrigued by the conspiracy theories and captivated by the pictures and videos in the museum on the 6th floor of the former depository. But since these events unfolded before I was born I lacked the real ability to feel the outrage and pain a person should while visiting such hallowed ground. That is until I stood in the window right next to the infamous window where Oswald allegedly shot the President. From that vantage I could see crude white X’s painted in the street marking where the bullets found their marks (where ever they originated from). At that moment I quickly and flippantly remarked, “X marks the spot” not comprehending what those X’s represented. Before that little phrase finished leaving my lips, I got it though, and I felt a huge surge of sickness and sadness come over me. It was a powerful image those X’s.
In a few short minutes I found myself in front of the building, with the knoll behind me and the Veteran’s Day parade going by. The marching band was playing the Marine Corp Hymn, flags were waving, and I looked at the time. It was 11:11 on 11/11/11 exactly 11 days prior to the anniversary of JFK’s assassination. Goosebumps erupted in waves across my skin and for the first time on this patriotic day, I felt like crying … But I held it back.
I reflected on why we set aside a day to honor our vets, both living and dead, as I traveled back home by way of a couple of flights across the country. That part of Veteran’s Day has always been real to me as my own father is a Korean War vet and I have several uncles who are Vietnam War vets. More than Independence Day or Memorial Day, Veteran’s Day has always held more personal relevance in my life and I try every year to reflect and contemplate it’s significance.
The final kicker of the day though, the one that made me shed a tear in true gratitude and patriotism, was upon the announcement by the flight attendant just before we exited the plane, that we had an active duty serviceman on board and we should all show our support by giving him a cheer. When he stood up, he so closely resembled my own son (and he must have been about the same age) that I realized the true cost of our freedom. I felt it quite painfully real. It’s not our ancestors who’ve fought and died or historical events that stir an honest sense of sadness and patriotism in me. It’s the thought that boys (that could be my own little boy) are giving their lives for me and people they don’t even know. They are bravely fighting wars to keep us safe and to keep events like Pearl Harbor, Kennedy’s tragic death, and 911 from happening again. I felt a mother’s pain and pride when that boy – no – MAN in uniform stood up and removed his hat in appreciation of our cheers.
God bless the USA and God comfort all the grieving mothers whose sons and daughters will never come home from the fight!!!Details
Grain free eating isn’t that hard but it does require a little extra effort and forethought. In the past couple of years I’ve actually had to think about establishing some routines in my life, which, for those that know me well will nod in agreement, is like trying to bottle the wind. I’ve always been an impulsive, fly by the seat of my pants, kind of girl. But, knowing I must plan ahead for my meals has helped bring about a certain order in my life. For instance, I have to set my alarm on Saturday mornings so that I can be up early enough to get to the the local Farmer’s Market to buy my grain free meat and eggs. But instead of waking up begrudging the alarm on a day I used to sleep in ’till hours I shan’t mention, I wake up gleefully before the alarm and jump in the Caddy and race to Downtown Wake Forest. Why? Just for eggs? Not entirely. Dowtown Wake Forest holds magical places to explore and engaging people to visit. I love my Saturday morning routine now and wouldn’t trade it for even a single Saturday of sleeping in ever again!Details
Sitting in the barber chair, I felt my head get significantly lighter as the barber snipped away my long tresses. It was a liberating feeling! It was like something intangible was lifted away along with the weight of the hair. I couldn’t help feel a tiny little bit of remorse though for what I had just done when I gazed down at the pile of freshly shorn locks that used to be attached to my head. Yet at the same time I felt giddy with a sense of daring bravery – like I had just broken out of prison. I had spent the majority of my life adorned by, enveloped by, and defined by long curtains of hair. I loved my long hair. I still do. And it will be back. But for now, it’s fun to be sporting a sassy crop of spikes haloing my face.
So the burning question on everyone’s lips these days is, “Why in the world did you do it?” (I bet some people think I’m having a midlife crisis.) As to the short hair, there seems to be two camps of opinion out there. Some people can’t fathom that I got rid of such pretty long hair and think I’ve made a huge mistake. Other people think it’s the coolest thing I’ve ever done. I’ve gotten lots of compliments and the majority of them center around the phrase, “you look so much younger.” THAT, I find extremely humorous. After reading the rest of this, you will too.
Alright, so is it a midlife crisis? In a way, yes. But not in the traditional sense. I am 45 years old and that most certainly qualifies me as middle-aged. I can see and feel the signs of an aging body, face, and hair every time I look in the mirror or tackle a set of stairs. My children are grown up; my daughter is married and my son has graduated from college. I am getting older and it’s a reality. When I look back at pictures of my former, youthful self, I see and recall a crowning glory of long, vibrant, silky, full-bodied hair – dark brown with red and gold highlights. It was a thing of beauty which never failed to garner attention.
But in my mid 30s I discovered (oh the horror) a few nasty, wiry, silver hairs poking up through my luscious strands like a gleaming pitch fork tines. Um…WHAT? This couldn’t be happening to ME! So I plucked them . . . and they re-grew . . . and apparently multiplied. (Word to the wise – plucking gray hairs is like dowsing water on your Mogwai – see, I told you I was old – you are too if you get that reference) So one day, I did the unthinkable – broke down and bought a couple of boxes of hair color. “This is it,” I thought, “say goodbye to the beautiful hair forever.” I actually cried. The thought of having to color ALL of my hair when all I wanted to do was cover up a few gray strands killed me. I still had TONS of beautiful locks! But I took a deep breath, wiped away the tears, and did it. And for the last 10 years I’ve been doing it. At first I could get away with going 3-5 months without re-coloring it. Over the past decade that time has diminished to its current range of about 3 weeks between colorings.
Over the last several weeks I’ve had a revelation. Life is short – and no, that’s not the revelation – I’ve known that for a while. What I mean is, our lives can be defined in 5 (yes FIVE) 20 year phases:
- youth/school aged = birth-20
- young adulthood = 20-40
- middle-aged = 40-60
- senior = 60-80
- elderly = 80-100
That’s it. Only 5. I’ve lived and enjoyed the heck out of the first two phases but suddenly I find myself in the third phase. Five years into the third phase at that. I only have 2 more phases after this one (if I’m lucky)!!
Revelation – I WANT TO LIVE while I’m alive (Thank you Bon Jovi for those words of wisdom)! I embraced the first two phases with gusto and made the most of them and I want to do the same with this one, and the one after and the one after that. I don’t want to wake up when I’m 60 and wonder why the heck I wasted what could have been the most vibrant phase of my life in denial and pretending I was still living in the previous phase; desperately clinging to it like I was hanging from a rope over the edge of the Grand Canyon.
God, in his infinite wisdom gave us a graceful transition to the last two phases – not an abrupt screeching halt. We do that to ourselves. Why on earth don’t we just allow ourselves to age gracefully and embrace every moment of who we are? I for one do NOT want to wake up one day and suddenly be a wrinkly, gray-haired, little old lady and have arrived there as if a train smashed into a concrete wall. I want to make a gradual change and welcome the new beauty in my body, face, and hair, at every age. We only get one chance to live our lives. I don’t want to live mine as a lie. I’ve blown almost 10 years of it already in denial. I’m not going to waste once second more!
So back to the burning question, “what’s up with the hair?” Well, I’ve had it. I’m done! No more hair color for me!! I want my crowning glory back in whatever color and texture it happens to be. After several weeks of investigating my options, it appeared to me that the fastest way to accomplish my goal would be to cut off all my hair and let it re-grow. I’m far too impatient and frugal to spend the next several years trying to highlight, lowlight, tweak, or whatever-it-is-they-do to my hair to mask the line of color growth. So off it came.
THAT was phase 1. Phase 2 is the color change you’ve all been guessing at, but now you know it’s not what you thought it would be. Growing and snipping away the old color will take several months to accomplish, but my hair grows fast so it won’t be a long wait. I can already see real hair! Phase 3 is the re-growth to restore those long tresses to a new-found beauty. That will surely be the longest phase but one I’m going to have a lot of fun with. There will be lots of great hairstyles to play with along the way.
Hopefully my journey of hair transformation will inspire other people (especially women) to grab hold of life and live it to the fullest. My advice: embrace who you are and where you are – right now! Don’t live in the past and don’t live for the future. You’re missing out on LIFE if you do either.
Colleen Ann Guest
September 14, 2011
Phase 1 complete . . . Phase 2 underway . . .