"The un-Twisted Sisters"...Amy & Mel
The door slams shut shaking my kitchen, as it does every day at roughly 3:30. My place of solitude,quiet, and research turns back into a kitchen. Within the first 15 minutes of being home I feel like a ball player at batting practice, but the machine is turned on high, throwing out balls for me. You have to be aware, in the zone, or you might get hit.
Mom, can I have something to eat? Can I have candy? Can I have this random left over article of whatever is in the fridge ( that would be the voice of my constantly growing 11 year old son). I have homework. Do I have swimming? Can I play computer? Can I go outside? Can I _______? It wears my brain out, every day for 15 minutes I pretty much answer yes no and maybe. It’s like they have been planning these questions all day!
Today when the onslaught of questions if over my daughter says with hands on hips, ” Mom, I NEEEED your help, I have a lot to say for this thing I need to do for school, we are having an aware fair and I need to write this paper about how someone with a disability that I know has changed my life. Will you help me?” ( There was no breath ANYWHERE in that request.)
How could I resist helping my daughter with this paper. “Of course I will hon, just let me know when your ready to start. “
Now, Mom, I’ve been thinking about it all day and I wrote a few things down in my note book. She opens the purple backpack to revel this tattered composition notebook, and opens its curled edges with her tiny fingers. She looks up for a moment and says, “ok you type I’ll talk.”.
As I ready my fingers to put her words to “paper” I wonder what I will learn about today. She has several friends at school with disabilities, and she has such a compassionate heart for these friends. I wonder what story she is ready to tell and what new things I will learn about my daughter. The sound of wood on stone lets me know we have serious work to do, she has pulled the kitchen chair up next to me at the computer and has settled in. I ask if she is ready to go, she nods and Her first sentence tumbles from her mouth,”My Mom had something called Sacroiliac Joint Dysfunction”
My stomach lurched, I held my breath… oh Lord – what is she going to say, where is this going to go, should I even look at her? She had to chose someone DISABLED that changed her life… she’s talking about me, oh this child has always seen so clearly, so much to the heart of the situation that it burns through me at times. So young, only 8, and yet such clarity. I don’t’ want my emotion to get in the way of her voice. So I stare at the computer screen. Huge, white, with the cursor blinking, waiting for more of her words to tumble out. My heart braces for what it may hear.
Here they are, I think you, like me, will be surprised at the things Erin brings to light for us. We are all somebody’s something. None of us live our lives in isolation, and so our pain affects those around us, but I was surprised at how SHE reflected on those hard hard years. The more she talked, the harder it was to hide the tears that slid down my cheeks. Her are her words on our family and my situation.
My Mom had something called Sacroiliac Joint Dysfunction. She had it when she was 18. She got hurt when she was doing a flip turn swimming for her college. She tore her ligament in her butt. When that happened she froze in the water. She was in a lot of pain. The coach pulled her out of the water, and the trainer came to help her but no one knew what was wrong. She finally found a Physical Therapist to help her, but over time the injury was just too bad and she hurt all the time.
She couldn’t do as much as all the other Mom’s could do. But she could do and still can do stuff that other Mom’s can’t do. I have the same thing as she did but not as bad. She learned from her physical therapist how to help me feel better and put me in place. Most other Mom’s can’t do that!
Just because she had SIJD does not mean that she has to be treated differently. Sometimes I do not like that she had this. Sometimes she knows too much and the things she does to help me I don’t like sometimes! She was in pain all the time, and I hated that. When we played it hurt her. This affected me and my brother, Connor, a lot. She could only sit and stand for about 15 minutes at a time and needed to lay down a lot in between. It meant we needed to play a lot of games laying down, and that was kinda hard, and not nearly as fun because we could only play board games and card games. I wished she could have actively played with me and drawn with sidewalk chalk, sit and color with me, or just go for a walk with the dog, or come outside and watch me roller-skate.
Some of the things that I liked about the situation was we got to eat up in my Mom and Dad’s room a lot, and got to watch lots of movies and TV and cuddle with her, but I couldn’t get too close to her or it would hurt her more. I liked that we got to spend lots of time together as a family. We were never very busy, so we got to talk a lot. We also got to eat out a lot.
She finally had surgery a little over a year ago to fix it. Now things are really different, she can get up and play with us with out hurting, I can sit on her lap and she doesn’t hurt, we even played with sidewalk chalk the other day.
Some stuff she won’t be able to do ever, even if she was the healthiest person ever and never hurt anywhere, like sky diving, or bungee jumping, or hang gliding, the surgery she had to fix her made it so she can’t do these things.
One year after her surgery she decided with this awesome experience that she wanted to help others with the same thing as her, so she has helped lots of people and has written about her experience on this journal website thingy. I’m glad she helps other people and I want to help too.
By:
Erin 
I exhaled and hugged her. Unaware at how deeply she had reached into my heart or that she had placed a band-aide on more of the worries and pains that living with this dysfunction caused, she just said, “Wanna watch me skateboard now?” Yes, Erin, yes I DO, let’s go.
There are a few scales that the medical community uses to determine how we are doing and where we “fit”. It’s been my experience that most of my medical professionals have assessed these things in a very conversational way. Asking me questions about my life and how I do things, and just observing me, but now that I have looked at a few of these tests, this is without doubt the information they were collecting.
I noticed in my own journey that I was unwilling to label myself as “disabled”. Maybe it’s the super mom thing, maybe it was self-preservation, maybe it’s just cause I am a stubborn goat… I’m not sure, but after taking the test while putting this page together, all I can do is shake my head at myself.
Here is the Oswestry Low back pain scale… it’s a test you can take yourself and SEE where YOU fit…
I was at an 82% by the time I had surgery, it’s now 8% at 14 months post-op.
INSTRUCTIONS: Simply answer the below questions by choosing the ‘best answer’ that describes your ‘typical’ pain and/or limitations within the last week or two. You can only choose ONE answer. If your limitations fall in-between two questions, pick the higher point value question. After you have finished the test, add up your points, divide that number by 50, and multiply by 100 to get your percent disability.
Oswestry Low Back Pain Scale - clicking here should take you to a PDF… keep track of your score and then see how to score and interpret below…
INTERPRETATION:
Now, simply add up your points for each section and plug it in to the following formula in order to calculate your level of disability: point total / 50 X 100 = % disability (aka: ‘point total’ divided by ’50′ multiply by ‘ 100 = percent disability)
SCORING:
0% to 20%: minimal disability: The patient can cope with most living activities. Usually no treatment is indicated apart from advice on lifting sitting and exercise.
21%-40%: moderate disability: The patient experiences more pain and difficulty with sitting lifting and standing. Travel and social life are more difficult and they may be disabled from work. Personal care sexual activity and sleeping are not grossly affected and the patient can usually be managed by conservative means.
41%-60%: severe disability: Pain remains the main problem in this group but activities of daily living are affected. These patients require a detailed investigation.
61%-80%: crippled: Back pain impinges on all aspects of the patient’s life. Positive intervention is required.
81%-100%: These patients are either bed-bound or exaggerating their symptoms.
http://www.paradigmcorp.com/blog/?tag=oswestry-low-back-pain-scale
Another scale they use A LOT is that STUPID Visual Analog scale, you know the one with the smiley faces…. rate your pain on a scale of 1-10 10 being the worst pain you have ever felt.
I don’t’ get this scale, I have NO idea how someone with Chronic pain is suppose to interact with this scale.
Here is a great useable interpretation by Andrea Mankoski
A blog from an Er Doc in the Northwest posted these definitions for this scale for a more amusing look:
“You’ve probably seen some version of that chart before. You may also have noticed how inadequate it is at helping you. Based on the faces, this is my interpretation of the chart:
0: Haha! I’m not wearing any pants!
2: Awesome! Someone just offered me a free hot dog!
4: Huh. I never knew that about giraffes.
6: I’m sorry about your cat, but can we talk about something else now? I’m bored.
8: The ice cream I bought barely has any cookie dough chunks in it. This is not what I expected and I am disappointed.
10: You hurt my feelings and now I’m crying!
None of that is medically useful and it doesn’t even have all the numbers, so I made a better one with all the numbers: ( see below)”
The worst pain I have ever felt in my life is the feeling that is with me daily…. so it’s a 10, all the time, a ten… my entire butt and low back are on fire, literal fire all the time, the pain that shoots in my groin and hip and down the back of my thigh are horrible… oh but wait that KNIFE that sticks in my backside that causes me to drop to the floor… now that’s pretty bad too… well the fires in my rear aren’t as bad as that knife, so maybe I’m only a 7…
I ramble to point out the INSANITY of the 1=10 scale in our cases. I eventually stopped answering this question and would say well I can’t bend without pain, I can’t carry a laundry basket down stairs, my kids have to stand on chairs to hug me, ect ect. I couldn’t GIVE them a number, I COULD paint a picture. So if your at the end of your rope trying to figure out how to quantify your pain, your NOT alone.
I do suggest that you skip telling your provider your at a 10. Most of the ones I have dealt with, even the good ones, will say, well then you should be at a hospital then. I wanted to say YES YES I SHOULD, but I am a Mom and a wife and this never ENDS it is ALWAYS like this, so I have learned to LIVE with it.
Or you can try bringing this scale in :
“0: Hi. I am not experiencing any pain at all. I don’t know why I’m even here.
1: I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.
2: I probably just need a Band Aid.
3: This is distressing. I don’t want this to be happening to me at all.
4: My pain is not kidding around.
5: Why is this happening to me??
6: Ow. Okay, my pain is super legit now.
7: I see Jesus coming for me and I’m scared.
8: I am experiencing a disturbing amount of pain. I might actually be dying. Please help.
9: I am almost definitely dying.
10: I am actively being mauled by a bear.
11: Blood is going to explode out of my face at any moment.
Too Serious For Numbers: You probably have ebola. It appears that you may also be suffering from Stigmata and/or pinkeye.”
( or quiet possible Chronic SIJD with other co-conditions layered in!)
Someone in his comments section added :
1o should be I am afraid I am going to die from this pain
11 should be – I am afraid I WON”T die from this pain, but that it will never go away. Isn’t that the sad sad truth.
for more from the funny ER Doc go here – Movin’Meat. But at least we know SOMEONE gets it!
But seriously, I know many of us are trying to figure out “how bad” we are and if we are really “disabled”. Take a look at that first scale for some real help and put your mind at ease. It will help you see where you are at,and make decisions about treatment and finances, applying for disability ect.
Hopefully the second scale makes you smile a little 
I kinda love facebook at times. It enables us to stay connected to so many people from so many different places in our lives. This week I was posting my joyous news that I had GOTTEN my acceptance letter to PTA school. _ Hang on … just hang there for a moment. I MADE IT IN. In two years I will be let lose into a clinic somewhere here in Illinois to treat patients under a PT. WOW. Ok, lets be real, if I had been asked a year ago if I thought that I would be back in school and heading for a new career – no way, no freaking way – wouldn’t have happen. I wasn’t ready yet, I hadn’t been through what I would need to go through in order to get where I am now.
I posted on my facebook wall I got in… I GOT in…. I GOT IN!!!!!!!!!!!!!!! and a treasured friend and former pastor of ours stopped by my wall and said ok Aim, got in where, what… what did I miss. I Gave him the 3 sentence sum up… bad bad pain, surgery, better now… um go to this website for fuller story . A few hours later he came back and asked if he could use my story as part of his sermon. I was humbled, and awed. OF COURSE you can. He said he was going to be preaching on why bad things happen. I’ve answered this question a million times in my years of ministry and loving Jesus, and I agree with what Brent lays out in his sermon.
If you want you can listen to Brent’s sermon here at Reno Christian Fellowship ( The sermon was from March 18th 2012)
He himself is no stranger to pain and loss. As I sat here at home listening to the sermon, and his retelling of my story, I sobbed. BIG huge tears. A feeling of, well, blessing, came over me. It was a HUGE feeling, it rattled me, it changed me in that moment. There was something beyond powerful about this friend of mine reading my story of pain and frustration, seeing my fight for hope, and the excitement I have NOW that I will be able to contribute to furthering solutions for SIJD and all the pain it causes. It is redemption in every sense of the word and it makes my skin tingle and overwhelms every part of me at the thought of it. The idea that God is willing to take me into a place where my year of pain and suffering can be transformed into something he can use is so far beyond my comprehension. It’s so big and overwhelming to me, that God would chose to use me and my story to point to him, to bring others hope, and even more to mend my heart is such a deep deep blessing I find it hard to find words to bring it into full color for you.
I know many of you are suffering far beyond your measure, the idea that this suffering could ever be anything else OTHER than suffering is probably laughable. But what if it’s not. What if there IS a point to all this…. what if it’s NOT for nothing……
I was reading a friends blog this morning, it’s my best friends sister and her family, they are in the process of turning their family of 4 into a family of 6. They are in Ethiopia and have adopted 2 beautiful children and said their goodbyes to the orphanage they have been staying. Their was a party and a closure, a chance to say goodbye.
Here are my friends words,”The older kids were then asked to pass along what their wishes and hopes for their two friends. They dream that Ibsitu and Gelmessa would be everything from a doctor to a professional soccer player. But the recurring theme was that they would return to Ethiopia one day to visit and help other children like them. ”
That theme is one I share, to return and help others that suffered like me. From the orphan being brought into a family and a new land, to someone like us, a person that suffered in chronic pain, that was brought into a new life – we should return, to share the hope and redemption God has shown in our lives to help others.
to read more on the adoption journey please visit teamforman.com
So you have found the wonders of your new SI belt, but your still not sure how to put it on… that’s ok most of us weren’t when we got it either! Here is a quick video that explains how to put it on. Research shows that wearing it under the little bones that stick out at the front of your pelvis is FAR more effective than wearing the belt higher up… so keep that in mind when putting it on.
I can so excited today, like a kid on Christmas morning waiting to open presents! It’s just a normal Saturday for everyone else around here, but this afternoon I am getting a chance to see one of my smaller “big ideas” get hashed out. I got a call earlier this week from someone that can help me with a project I have wanted to do for awhile that I think has the potential to help people with SIJD. I had only mentioned my idea once in passing and was just praying for God to make a way for it to happen if it was needed. So to get this phone call this week was thrilling in every sense of that word! I danced and jumped all around the house after hearing it. Mostly because it means some cool things might happen. We are going to meet today and talk about what we can do with our short time and resources, but it will end in SOMETHING and most likely the ability to do a few somethings in the future. I wish I could share more right now, but I want you to be excited and surprised too. But it is good and when it is finished I will be able to share it here, which is the BEST news! So friends, be excited, good things happen when you aren’t expecting them!
At some point in our lives, each of us faces the loss of someone or something dear to us. The grief that follows such a loss can seem unbearable, but grief is actually a healing process. Grief is the emotional suffering we feel after a loss of some kind. The death of a loved one, loss of a limb, even intense disappointment can cause grief. Dr. Elisabeth Kubler-Ross has named five stages of grief people go through following a serious loss. Sometimes people get stuck in one of the first four stages. Their lives can be painful until they move to the fifth stage – acceptance.
During grief, it is common to have many conflicting feelings. Sorrow, anger, loneliness, sadness, shame, anxiety, and guilt often accompany serious losses. Having so many strong feelings can be very stressful.
Yet denying the feelings, and failing to work through the five stages of grief, is harder on the body and mind than going through them. When people suggest “looking on the bright side,” or other ways of cutting off difficult feelings, the grieving person may feel pressured to hide or deny these emotions. Then it will take longer for healing to take place.
Grieving and its stresses pass more quickly, with good self-care habits. It helps to have a close circle of family or friends. It also helps to eat a balanced diet, drink enough non-alcoholic fluids, get exercise and rest.
Most people are unprepared for grief, since so often, tragedy strikes suddenly, without warning. If good self-care habits are always practiced, it helps the person to deal with the pain and shock of loss until acceptance is reached.
http://memorialhospital.org/library/general/stress-THE-3.html
My heart is heavy, heavier than it is has been in a very very long time. This seems impossible to write about, and yet the idea of staying silent hurts just as much as trying to write.
January 9th 2012 we lost one of our own. I got a call from one of the beautiful woman that I do SIJD outreach with and I knew what she was going to say before she said it. I didn’t want the words to come from her mouth, but they did and they hit me like a truck barreling down a highway at full speed. Amy, Cindy* killed herself. There were more words but I can’t remember them as my body went into shock.
I screamed, tears began to pour from my eyes. THIS is WRONG. So very very very very wrong. Cindy didn’t have an incurable cancer, or an inoperable tumor, or a rare unknown disease, she had SIJD. This 45 year old woman had SIJD and had fallen so far into despair because of the lack of help available to her in her community and immense pain she was in with no sign of help she could no longer hold out that help REALLY was available, anywhere. That help anywhere, was real, was too hard for her to hold onto.
While talking to another friend that had walked beside Cindy over these last 5 months trying to give aid and comfort we agreed that losing her was like losing someone that you had been in battle with, losing a fellow solider. But it’s not just that she was wounded in action… it’s far more horrific than that.. she was SHOT while being carried TO a medic! Those are NOT the rules of war. IT grieves me to my core that her story ended this way.
Dear friend, I don’t know the troubles and pains that your life has seen. I don’t know what your resources are. But please… please reach out to those around you. Despair and hopelessness can win this war, share your burden. GET help from those you trust. Let someone in to your wounded world. This is NOT a death sentence.
*name has been changed to protect privacy
admittedly, it’s not an easy task… it’s hard… and sometimes well… it’s irritating. Those people around you that always have a glass that is half full… they are always happy, and bubbly no matter the situation. Frankly to me they seem fake, I mean seriously who has a good day every day all day?! No me, that is for darn sure!
But that isn’t exactly what I am talking about. I was sitting in church today and the pastor said” Gratitude is the healthiest emotion psychologists say that we can have. The more grateful we are the healthier we are emotionally.” I know I heard it at church and it DOES have spiritual implications, but for today I just want to muse about gratitude in regards to our situations of pain and dysfunction. After a year and a little bit more of interacting with other SIJD patients like myself I have noticed that there IS a difference in the way people feel about their situations, no matter HOW bad things are physically.
Trust me and hear me here friend, I am NOT saying you can wish or think your way to a better less pain free life. That is NOT what I am getting at here. I do believe that we can not always control our bodies, our level of dysfunction. We can’t control the fact it hurts to sit in a car, or eat a meal out with our friends, or that while our friends train for a marathon, we lay at home hoping to make it down the stairs to the kitchen…. or that while friends deadlift a zillion lbs in training for that next competition, we have to hold back and try other things. I DO NOT believe you can wish or think your way into making those situations easier.
What I DO think is that while our friends run, and lift, and sit through movies AT the movie theater, we don’t HAVE to chose bitterness, and sorrow ALL the time. The resentment, and anger at all we have lost and our losing will choke us. It’s easy to be angry, at the family that does not understand and expects us to do “normal” parent things, it is easy to be jealous of the friends that go out and leave us behind because we can’t join them, it’s SUPER easy to be pissed as all get out at the Dr’s and medical community that look at us and roll their eyes, or shrug their shoulders, or don’t call back…. We need to be allowed the time and space to really feel these emotions, because they are real and we need to own them.
Equally as important is owning, feeling, and finding the moments to be grateful for. The friend that asks how we are, the spouse that handles a house hold chore, the children that want to simply BE with us, the fresh air we can feel through the window, the sunlight we can see with our eyes, the TV show that makes us laugh. We have to be aware of the little things, we need to pile them up and keep them close, but they ARE out there. Everywhere, every day, there is something to be grateful for. We have our sight, our hearing, our favorite pet caretaker, a food that we love, a conversation with a friend, a roof over our head… I don’t know what your moments are, but I know for me that if I were to focus on all the obstacles I would never have found the will to keep moving forward.
The Israelites had a cool tradition of building alters from rocks in the places where God moved so that they would remember to be grateful. No matter if you think God is fact or fiction… I do think it is important for us to build our own memories of gratitude as we travel on this road of SI joint dysfunction. Write those moments on scraps of paper and toss them in a bowl, or rocks, or keep a journal with the 1 thing your glad about today. Sometimes it’s hard and the thoughts are small, but I believe in my heart what the pastor said today… the more grateful we are the healthier we are, and who doesn’t want that!
Saying goodbye is never easy, especially when leaving such special people behind…two and a half years ago our family of six came to Georgia from Canada, broken and desperate for medical help.
Many cherished memories have been built here in Georgia since that time. The most significant being my healing from SIJD and our family being restored and strengthened.
Yet the healing we’ve been given lives on and overflows from our life to the world around us in a most enriching way. So, it is with full hearts and able bodies that we move forward to pursue the call to full time church ministry that God placed within our hearts many, many years ago.
In one week we will be in Texas! While completing his studies towards his Master of Divinity, my husband (Nigel) will begin volunteering his time to minister to a very special congregation there. We are so excited for this new season as a family! We can see now that the Lord has specifically prepared us for this and we are ready to follow where He leads us (and a little scared!).
From trauma to triumph, we’ve come A LONG WAY baby!
Here’s to all the adventures we’ve had in Georgia…
To my dearest friend and mentor Vicki Sims, thank you for believing in me and never giving up on me. Thank you for encouraging me to continue hoping against all odds and to cling to the Truth. Thank you for prodding me until I got up the courage to share my story publically online and to encourage others who may need support.
To my super-cool friend Hollie Autry, thank you for not letting me get away with being too serious and for helping me break out of yoga pants and brave heels and cute clothes again! And to the rest of the staff at GPT who always put up with me practically living at the clinic, thank you!
To each and every SIJD person I have met online and in person…I consider myself so very blessed to have had the priviledge of coming alongside you during a portion of your journey to recovery from SIJD. Thank you for trusting me enough to tell me about your story. You are each so unique and special, you have helped me to see my years of physical weakness as a strength, for that I am forever grateful. And what a joy it has been to meet some of you in person, the tears we’ve shed and hugs we’ve shared have been healing to me too, thank you.
To our beautiful house on the lake which God miraculously provided us as a safe place to recover. We’ll never forget the cherished memories of afternoons spent at the beach or hiking in the lush forrests accompanied by plentiful wildlife…our boys catching all sorts of cool and disgusting creatures almost daily. To a great neigborhood with the best neighbours we’ve ever, you truly cared about our well being.
And while I’m on the topic…
Thank you also to our dear life long friends and cherished family who have stuck by our side through thick and thin…we put you through so many heartaches and yet you’ve still loved us with such tenderness and care. You’ve helped us see what relationships can look like when we are the ones who need help and not the other way around. We’ve learned the hard lesson of humbling ourselves to allow you into our pain and how beautiful that can be…thank you for your sacrifices on our behalf and for believing in us and the choices we’ve made.
Finally, to my incredible husband and my children who are stuck with me whether we’re in Alberta/Canada, Georgia or Texas! My dear husband, your love has never been so real to me then when you graciously served me hand and foot. You changed me, fed me, carried me up and down stairs and in and out of wheelchairs. You stood by my bedside on so many hospital stays while I was mostly unaware of how serious things got. You have been my greatest advocate, my strength and the strongest man I have ever known. You loved our children and cared for them as I would have, even when you were broken inside. Though you protest, I will always hold fast to the knowledge that you carried me to Jesus and on your shoulders I found healing. And though I often begrudge it, thank you even now reminding me to pace myself (post-SIJD) on the days I feel invinsable!
To my four precious children and most cherished gifts I have ever had in my life, thank you for genuinly enjoying and appreciating me when I was at my weakest. You helped me see value in who I am, without my ability to earn your love by my works. Thank you for the years you spend by my side when I was crippled. I know I would have given up if not for the hope I saw in your eyes. Thank you for your patience and for spending time with me in unconventional ways with my bed always in the mix. Most importantly, to my Heavenly Father…time and time again You have shown me that You will never leave me or forsake me. Thank you for your unconditional love and grace that sustains even in the darkest of times and the harshest storms. You are my life.
Here’s to the next great adventure in our life, Texas here we come!!!
