I'm a woman sharing her life experiences on living with CPRS, being a special needs mom, marriage, and all the humor and fun found in daily life if we just look for it. I want to share all it with all of you, and hopefully also be able to show you how God gives us grace and strength through each of our journeys!
Friday Night Football has been a part of my life since I was a teenager marching in the White County Warrior marching band. I have such fond memories of that time in my life. Sure- all the practicing that started in the heat of the summer was rough, and the fact that it took three nights out of my week between rehearsing and the game was hard, but it was all worth it. The things I learned, the friends I made and the fun I had made such a lasting impression on my life.
There was several years when my kids were little that those Friday night memories faded, but once my son was a teenager and he joined the marching band himself, the fun and memories of Friday Nights in a small town resurfaced again. The practices, competitions, riding the bus to away games, and working in the concession stands, brought back all the smiles and fun times that I had in my youth- except it was even better because I was experiencing it with my own son.
My daughter absolutely loves football- wether its our local high school (which she still deems her school since she graduated there) or her favorite college team The Georgia Bulldogs, she always tries to watch each game she can. So, she hitched a ride with a family friend tonight, and off to the game she went. Unfortunately, it started to storm, the game was called, and they had to leave early. But, as she often says, “oh well, maybe next time”. So I’m sure she will be checking out the schedule and finding a way to get to the next game! LOL In the meantime, we will just head out to the Dairy Queen and get us a blizzard!
Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. Hebrews 4:16 NIV
Hey everybody! It’s been quite some time since I have written a blog post. There’s just been so much going on in life that honestly I just let my blog fall off to the side. BUT…
God has really been working in me and letting me know it’s time to get back on here and blog. So here I am! After all, He is the one that planted the seed for blogging in my mind two years ago, and then I failed him by not sticking with it as I should’ve. So this time I’m gonna do my best to put myself out there and be open about life! My faith, my family, my friends, living with a chronic illness, being a special needs mom, and plenty more. All of these things I believe God can use to reach someone so I will go ahead and take the first step and let Him do the rest!
Why did I name this blog what I did?
Grace has many different definitions. When you google the defintion of grace, it automatically brings up 7 different things that the word grace can mean. Maybe the first thing that comes to mind is elegance (walking with graceful movement), or being courteous (showing the social graces). Or maybe you are a Downton Abby fan and you think of it as a title to describe a Duke or a Duchess. 😀 Maybe you’ve even used a “grace period” on a loan before, skipping until the next month to make your payment without penalty. But the meaning for grace in my blog title has nothing to do with any of these. Instead, I’m using the Biblical Definition of Grace: The free and unmerited Favor of God. So how does that play into my blog name? Well, when I think of Grace, I have to remember that Grace is undeserved favor. Grace can’t be earned or bought, and is definitely not deserved. God chooses to give me grace daily, and I must remember to choose to give Grace to others freely and of my own choosing, just like Christ does for all of us. Christ loved me (and you dear reader) so much that he died on the cross for us, forgiving us of any and all sins that we do in this life. But although that grace is free, we must choose to accept it, along with his free plan of salvation for us all. I can always count on the grace that he has given to me, but do I give others the same? Do I choose to give grace to my husband when he forgets to do something that I have asked him to do? Do I choose to give grace to my daughter when she decides that she doesn’t want to help fold the towels today, and chooses to do something else instead? Do I act with grace when someone cuts me off in traffic or do I have other things to say about it? Grace is given to me daily, no matter how many mistakes I make, no matter how frustrated I get with my family, and no matter how hurt I may be from something out of my control, because I have accepted Christ, and he is Lord and Savior over my life. Being a Christian, God chooses to give me grace daily, and that grace will help me get through my day, no matter what is going on. So when I chose to name my blog Grace for Every Season, I literally thought about how much Grace God really does give me- day in and day out- no matter what the season is, and I should strive to give that same grace to others- my family, my friends, and everyone else I come into contact with each day. Instead of getting frustrated, or giving someone a piece of my mind, I need to remind myself to just give them some grace- because I don’t know what the other person has been through that day, and maybe the grace that I give to them, is exactly what they need that day.
So if you’ve never thought about Grace this way, and you’re curious about how that looks, reach out to me and I’ll be glad to answer the question you have. It’s not something that comes easily for me to do, but if God can forgive my mistakes, and show me the grace I don’t deserve, then I should most certainly be able to do the same for others.
Now that you know a bit more about why I named my blog the way I did, hopefully you’ll continue to follow my blog and share in a bit of my unique life. If you’re new to this blog, I encourage you to go back to my very first blog where I talk a bit more about myself, and my family and my decisions for creating this blog. Until next time, Grace be with you! Elizabeth
“Grace, mercy and peace which come from from God the Father and from Jesus Christ- the Son of the Father- will continue to be with us who live in truth and love.” 2 John 1:3
“Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.” Hebrews 4:16
As I sit and start typing this I have been in a week of what those of us with chronic pain conditions call a pain flare. What is a pain flare? Well, there are several variations of official definitions, but in essence, a pain flare is a sudden increase of pain in a person who already has chronic pain from a medical condition. A pain flare could last for hours, days, or at times a week or more. They can be very hard to settle, and can limit a person’s functions even more than what they usually experience. Sometimes a pain flare is called breakthrough pain, because it breaks through our normal chronic pain experience and causes exacerbation of our symptoms, both pain and other symptoms. There are several things people with chronic pain of some type have in common: 1) we all live with pain that is constant and we must find a way to deal with it daily, 2) Those of us with severe chronic pain, live with an amount of pain that would essentially cripple other people, while we still must find a way to function and live our lives 3) we all know what a pain flare is- whatever we choose to call it, and we all must find our own ways of dealing with them, and 4) no ones pain and pain flares are the exact same, even if their diagnosis is the same, so what may help one person, may not help another, and we may even find that what may be helping us at one point, may stop helping, so we must always be aware of our pain, and find healthy ways to deal with it.
So with all that now being said, let’s get back to what I have found that helps me to function the best I can through the 24/7 constant pain, and through a pain flare. As I stated in an earlier blog, I live with a condition called CRPS. On the MaGill pain scale, CRPS (formerly known as RSD) is listed as the highest pain condition known. On the image below, you can see where the most common pain (both acute and chronic) fall on the scale. The pain from CRPS is higher than childbirth, and the more common conditions of arthritis, and fibromyalgia, among others. Finding a way to deal with such constant, chronic pain and the other symptoms it brings with it, can be challenging, but it is something those of us with CRPS must attempt to do each and every day so that we can live as normally as we possibly can with this condition.
So what do I do to cope with my daily pain and my pain flares? Increased rest is the first thing that I know I will need to do for my body. One thing that I do is to try to focus my mind on something else instead of the pain. I may call a friend, or if my brain fog isn’t too bad and I can tolerate sitting and holding the book, I try to read. If the pain in my feet and legs are bad, I try to elevate them, remove any socks or shoes that may be causing increased pain, and try to move the affected part in small motions so as to help with the pain and stiffness of my feet and legs. Another thing I may do is apply warming mitts if the flare is in my hands, or a soft, warm, and lightweight blanket if it is my feet in a flare in order to keep the circulation going and warm my extremities. Often times, my flare fluctuates between the icy stages of CRPS (where I would use the warming mitt) and the fire stages of CRPS. Unlike what you’d think though, using ice is a big no no for most of us with CRPS, so if I am in a fire flare, I just have to do other things until it passes. Another thing I have to use in times of increased pain is a different pain medication than I take on a normal daily basis, and I will use it. Let me insert here that. pain medications (opioids) of any kind are a tool to use just as all the other methods I use to get through each day and flare, and are not a fix all, so they really need to be closely monitored by a physician to make sure that addiction to them doesn’t happen. My physician does testing on me at every visit to make sure my levels are the therapeutic amount he expects based on what is prescribed.
These are the warming mitts I use when my hands are in an ice pain flare.
Cognitive Behavioral Therapy is another technique I use not only daily, but especially when I am in a pain flare, to try to just gain control over my brain and mind so that my fight/flight response doesn’t get out of hand, causing an even worsening flare. Another thing that really helps me, not only with the daily pain, but also to get through the flares, is to listen to music. For me, that is usually a mix of Christian, Country, 80’s, and jazz. When in a flare, I will usually choose either a quiet jazz (because it is soothing to the nervous Sytem) or Christian music because both help to settle my brain and bring a calming presence to my body. Prayer also is a tool that I use to bring myself through a pain flare. I’ll just close my eyes and try to focus on talking to God instead of focusing so much on my pain flare. Praying is a daily part of my life, as I have a personal relationship with Christ, and it is like talking to someone I know loves me and helps me, no matter how rough my day is, and he doesn’t care how badly I feel or how grumpy I am from the pain right at that moment. He loves me in spite of it.
I recently fell, pretty much face planting it in my front yard because I was trying to grab up my brand new puppy who had run out the front door. Landing on my face, knees, and hands I knew I would need to really get my nervous system calmed down, as I already could visibly see a flare starting in my hands. So once, I got back inside, and of course had tucked the puppy into her crate and checked myself and cleaned my wounds, I immediately started streaming some quiet nature videos with relaxing music to them. I just sat for at least the next hour just soaking in the calming presence of the video so that my nervous system would settle down and not cause my body to go into a full out flare. (I did end up having to have x rays of my hands and wrists, but was able to keep the flare down to a minimum by immediately doing this, and reminding myself that I was ok).
Lastly, if I am in a flare, and I need something more than I’ve already done, the next thing I will do is to just go lay down and take a nap. By doing that, it gives my nervous system time to settle itself down. I have found when this is the option that is needed, that I cannot put a time limit on how much I lay down or how long I sleep even if it is in the day. I just leave it up to my body to decide, as it is in those times that I will actually sleep as opposed to my normal fitful and sleepless nights. Giving myself grace for having to do these things to take care of myself helps to alleviate the feelings that I am somehow failing my family by needing to lie down. I know they understand, and they want me to rest and be my best, but sometimes I fight those feelings of inadequacy because of having to deal with all of this. But I remember that God gives me grace, and I try to do my best to extend that grace to others, so why not extend that to myself when needed as well?
These are many of the ways that I have learned to cope with a CRPS pain flare. Others may cope differently, depending on the source of their chronic pain and what works for their bodies. But one thing I can say is that I must do what works for me if I don’t want to stay in a flare, because any length in a flare is too long!
Until next time! Wishing you health and happiness. Elizabeth
Hebrews 4:16 NIV Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
Time. What does the word mean? In the Merriam Webster Dictionary alone, there are 15 different definitions of time as a noun, and several more as a verb and an adjective. But what does time really mean to you? We’ve all heard of the phrases “the passing of time”, “time is a thief”, “don’t waste my time”, “turn back the hands of time”, “it’s time for a change”, “out of time”, “spare time”, “on time”, “make time”, “as time goes by”,”just in time”, “time flies”, and even phrased a bit differently by the White Rabbit in the book Alice in Wonderland. As he goes running through Wonderland with his very large timepiece, he calls out “I’m late, “I’m late, for a very important date” Why do we tend to put so much focus on time? And how much have you really thought about what time means to you?
Time is something that as children we often want to rush. I can remember waiting to get just one day closer to summer break, one day closer to Christmas, one day closer to whatever fun activity that it is that me and my friends wanted to do. It seemed like I was never going to reach the ripe old age of 16 when I would finally be old enough to drive a car. I can remember thinking that the days were so long when waiting for these things, or it seems like the ride took ages when getting to a vacation destination. Yet, after the activity had been done, or the vacation was completed, it seemed like getting home didn’t take much time at all. I can remember counting my age in half years. I would always say “I’m 12 and a half” or whatever the current age was. Does anyone else remember doing any of these things? I imagine there are many of you that did, and that some memories for sure came back of various things that you had forgotten about over the course of time.
Time is funny like that. It seems like when we are younger, we are always wanting time to speed up. As college students, or young adults, we seem to think there is never enough time in the day to actually complete all the things we want to do. After getting married and having children, there are many times that we feel stuck in some kind of time warp, where the days often seem the same at the beginning. Days of learning how to be a parent, staying up at night with our children, caring for them when they are sick, and things such as that. When our children are infants, we seem to want time to speed up just so we can hear them talk and see them walk, (and let’s admit it- we even just want them to be old enough to sleep through the night so that we can too). Then we realize what we asked for when time truly seems to speed up, and life becomes so crazy we don’t even know how we complete all our activities in the time we have during the day. Those kids do start to sleep through the night, walk, and talk, run and play, and grow even more. Ball practice, games, church activities, maybe even dance or gymnastics start happening, and if we aren’t careful, we will get so caught up in the craziness of that period, that we will let time pass away from us, and unknowingly forget to savor those moments. Finally those kids start becoming teenagers, and we start wanting time to slow down, because we realize they will soon be gone from our home and leading a life on their own. Time itself truly does seem to fly at times, while at others, seems to move at a snail’s pace. Yet time is the same always. Time itself never changes. Sixty seconds to a minute. Sixty minutes per hour. Twenty-four hours per day. Seven days per week. Fifty-two weeks per year. It’s us that change. it’s us that look at time so differently. It’s us that hopefully come to realize that time is precious.
Has anyone ever heard the phrase “in the blink of an eye’? The actual definition is something that happens very quickly, or in a very short time. Or, for an even more descriptive definition, it is something that happens in an instant. Did you know that researchers have actually recorded the length of time that it takes for someone to blink? According to their research, a blink takes 100 milliseconds. For those of you who might want a little better description, a millisecond is one-thousandth of a second. I don’t know about you, but I’d say that’s pretty quick. My entire life, I’ve heard different people say that your life can change in the blink of an eye. I am not sure that anybody really understands what this means, until they have an event that does just that. Maybe that realization for you came with the birth of a child, the loss of a job, maybe an injury, surgery, or other illness that wasn’t expected. Maybe it was the loss of a loved one, or someone you love moving away. Whatever it was that caused you to realize how quickly that life can change, you understand how precious time actually is. It isn’t meant to just squander away, yet how many out there spend their entire lives doing just that? How many of us took too long to realize that God has a purpose for our lives, and we must be purposeful in the way that we live it out?
Time is such a valuable commodity. It is something that ticks on by the seconds, yet is something that most of us think nothing about. We just go on about our days, where time is not really on our minds. My daughter, who has Down syndrome, asked me the other day, “mom, why does time go by so fast? ” And I think, that in her own thought processes, even she realizes how precious that time actually is, as time is something we talk to her about quite a bit. If you’ve ever lived with or worked with a special needs person, you’ll know that most of the time, their sense of time perception is different than most. And most of the time, we are telling her she is wasting time with some of her daily habits. (Anyone that knows her, knows that she sets her own speed for most things). So, for her to realize that time does seem to fly by, makes us realize even more that time is truly precious. I mean, it seems like she was just born yesterday, and I blinked, and she is almost thirty now! Truly, where does the time go?
As I was writing this blog, God lead me to the book of Psalm. Psalm 90 is actually a Psalm of Moses, and the entire chapter is about how our time on earth is limited, and how we should use that time wisely, and with our eternal home in mind. Psalm 90 verses 10 and 12 reads like this:
Psalm 90: 10,12 NIV 10- The length of our days is seventy years- or eighty, if we have the strength; yet their span is but trouble and sorrow, for they quickly pass, and we fly away. 12- Teach us to number our days aright, that we may gain a heart of wisdom.
I actually really like how verse 12 reads in the NLT version as well:
Psalm 90:12 NLT Teach us to realize the brevity of life, so that we may grow in wisdom.
Something I have found for myself down through the years, is that I always seemed to feel that if I had any amount of rest or down time on my hands, I felt that maybe I wasn’t doing all that I could do, and wasn’t using my time wisely. I know what it is like to feel like you can’t rest because you have things to do, or you can’t take the time to refresh for fear of what others may say. Or maybe you actually try to take the rest time, but are made to feel guilty because of it. But I have come to realize through my life with CRPS, where I have to take time to rest, because I won’t be able to physically function if I don’t, that it is actually the other way around. That all the rushing, the cramming of things into the schedule, and just the general rushing around of life, is not using our time wisely, and is not healthy for us in the process. God doesn’t want us to be so rushed, and our schedules so crammed full, that we feel guilty when we take the time to just rest, enjoy time with our families, or spouses, our friends, and to spend time in prayer with him. God doesn’t want us to feel like we have to fill every second of our day with stuff. When we do that, we can’t hear what he has to say, and we can’t do what he wants us to do because we don’t know what that is, because we never stop to listen to him speak to us. God created the world in a time span of 6 days, and on the 7th day even God rested, and he directs us to do the same, not to work, squander or rush our lives away in busyness, but to take that time to renew and refresh. How many of you have rushed around so much you’ve missed things in your family’s lives? How many of us have truly thought that all the rushing around, and all the craziness was not only an ineffective use of our time, but might have all been done without thought of our eternal home in mind? Maybe you are one who never takes the time to stop and refresh, to spend time with your children, or your family. Maybe you are a Christian who doesn’t spend as much time in the word as you should. Whatever the case may be, I urge you to learn to take time to slow down, stop the constant rushing, and rest and replenish yourself, not only physically, but spiritually as well. I speak all of this from experience, so please believe me when I say that you will be a better person for yourself, your family, friends and God, if you’ll just take the time that you need to live thoughtfully, and with purpose, taking time to care for those things that are important.
Genesis 2:2-3 NLT On the seventh day God had finished with his work of creation, so he rested from all his work. And God blessed the seventh day and declared it holy, because it was the day when he rested from all his work of creation.
I hope that this blog spoke to you in some way, and has encouraged you to make changes to your daily routine if needed, to spent time with those you love, to spend time in the word, and to let God give you a heart of wisdom as each day passes. See you next time! Elizabeth
Hebrews 4:16 NIV Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
Hello everyone! Welcome back to the Grace for Every Season Blog! In my first blog post, I had mentioned that for my next blog, I would be talking about the word Grace, but I am going to postpone that blog until the next time. Instead, in honor of all the people like me around the world who live daily with CRPS, and because November is CRPS awareness month, I don’t want the month to go by without acknowledging it and using this platform to help spread awareness.
I have written and re-written this blog several times. When you live with something daily, you want to educate people who may have never heard of it, but sometimes you find that hard to do without essentially turning it into a whole book to read instead of a blog. For that reason, I have decided to just give you some basics, so that you are more aware of this condition and what those of us who live with it go through each day, and yes, it is still pretty lengthy, but worth the read. Also to note: all this information comes from my own personal experience, along with information gathered from the website http://www.burningnightscrps.org A big thank to them for all their wonderful information. They also have some wonderful graphics that condense the information into an easy to look at form.
So, What exactly is CRPS? Well, simply put, CRPS (formerly known as RSD) is a multi- system disorder, characterized by severe pain in the affected extremity(ies). But that doesn’t even begin to describe what CRPS really is, the symptoms it causes, and how it affects daily life. A person with CRPS can have all the symptoms or only some of the symptoms. Sometimes a person can even go into what’s called a “remission” where they improve and don’t have any of the symptoms of CRPS, but even then the persons CRPS is always there, just waiting on the next time it decides to start causing problems again. In my case my symptoms are always here with me 24/7, and I have just had to learn to deal with them and the pain as best as I can. Many people only develop CRPS in one extremity, but it can spread to other extremities. In my case, it has spread to all four extremities within a 2 year time span.
What are some of the symptoms of CRPS? *PAIN: burning, icy, gnawing, throbbing are some just ways to describe it, and the pain is usually out of proportion to whatever illness, surgery, or injury that caused the CRPS. *CHANGES IN HAIR/SKIN/NAILS: this can range from hair loss, too much hair growth in the affected area, brittle hair and nails, issues with ridged, and damaged nails, and decreased nail growth. *SKIN CHANGES: this can also vary but can include one or all of these: changes in skin temperature, excessive sweating in the affected area, hypersensitivity- also known as allodynia, thinning skin, shiny skin, cracked, blotchy, spotty, stretched, drying skin, wasting, texture changes and several others. *MUSCLE AND JOINT ISSUES: these include weakness, stiffness, contracture, loss of movement, tremors, spasms, jerking, dystonia, and wasting. *CHANGES IN CIRCULATION: lack of circulation, blood vessel constriction, and even infection, septicemia and gangrene in severe cases. *OTHER SYMPTOMS THAT CAN OCCUR: issues with eyes or teeth, migraines, headaches, depression, anxiety, excess stress, sleeping issues, insomnia, problems with the urological, respiratory, cardiac, and gastrointestinal systems, and reduction in bone mass or osteoporosis.
So do I really have that many symptoms? Unfortunately, yes I do. I have had and still have most everything on the list excluding just a few. I won’t go into which symptoms I have, or don’t have, but just be aware that someone with CRPS may look ok on the outside, but we are dealing with what is to most people an invisible disability. It is not fun in any way shape or form to deal with these symptoms continually twenty- four hours a day, seven days a week. The pain never ends for me. It does go through periods where it is more tolerable, and other times where is worsens, or even flares up to a more severe state. I am thankful that I have a pain medicine physician that treats me, and I’m thankful that he is caring, and helps me to keep my pain under control.
How do you treat CRPS? There are several different ways you can treat the pain and symptoms of CRPS. I won’t list them all here, but only the ones that I myself have had. Each person is different on what helps keep their pain and other symptoms under control (well as controlled as you can in a disorder that affects your sympathetic nervous system). *The first order of treatment that I had was Physical/Occupational therapy for the affected extremity. This was actually started after I had my surgery that caused my initial diagnosis of CRPS, but was continued for many months to help me after my initial diagnosis as well. *Opioids are another way that the pain symptoms can be helped. Of course, most of us don’t want to have to take narcotics the rest of our lives, but those of us with CRPS oftentimes it is a must in order to go through daily activities. *Massage therapy- I undergo massage therapy as often as I can in order to help my circulation, and help with my pain. This is not something that for what most of you would think is a relaxing time. This is literally a therapeutic time where often times it just down right hurts, but is helpful in the bigger picture, so it is something that I need to do to help myself. That being said, if you happen to be someone who has been diagnosed with CRPS and happen to be reading this, I would only go to a massage therapist who is either aware of, or willing to learn about CRPS, and how the treatment they use will affect your body. Even with my own therapist, there has been a time of trial and error where certain techniques may in essence flare me off for a while, so we have learned to avoid those, and stick with those that actually help. *CBT or Cognitive Behavioral Therapy is another thing I use to get through my day. It is something that my husband was taught to do when he developed a chronic pain condition, so thankfully I already knew the basis and premise of it when I developed my CRPS. There are many different things that CBT is used to treat, and several psychologist and counselors out there who use it for specific things that they are treating. For me it is essentially a way to keep my thought processes healthy, thereby helping me to deal with my pain levels, anxiety, and other symptoms. If you want to know more about CBT and how it is used, I urge you to look it up. So many people have told me things like “how can you smile if you’re in such pain?” or other unhelpful things such as that. But my CBT and God’s grace is what keeps a smile on my face even through the pain, because the opposite just isn’t where I want to be every day of my life. Of course, I have bad days where I fight to stay smiling or happy because the pain and the CRPS can just get you down, but I refuse to give up and give in. I just pray that God will help change my mindset that day so that I can get through the pain. *Sympathetic Blocks- I have had so many of these, and I have had both the Stellate Ganglion blocks (which dealt with my upper extremity CRPS), and Lumbar Stellate Blocks (which help treat the CRPS in my lower extremities). *Spinal Cord Stimulator- I had a Spinal Cord Stimulator placed to help with my upper extremity CRPS in August of this year. There is a possibility in the future, that I could have to have a revision on it to add leads in for the CRPS in my lower extremities as well, but for now, we are continuing to treat those with the Lumbar Stellate Blocks.
How can I help someone with CRPS? Well there are many ways you can help someone with CRPS. You can pray for them. You can help them by making a meal, bringing a purchased meal, helping to clean their house, take them on errands, be the driver for their procedures, etc… Those of us with this condition often cannot do those simple tasks for ourselves, but we won’t always ask for help, so don’t just offer the help- just go ahead and take it upon yourself to just bring the food, or come on over and just say, I’m here, what can I do for you today? If you can, offer to pay a bill for the person. Many with CRPS have lost their ability to work or hold down any type of meaningful employment, (and many have been fighting to get or keep Long Term Disability and Social Security benefits) but yet regular bills and medical bills keep piling up, so finances get very tight. If you’re able to do this, it’s a huge help. You can’t take the pain and symptoms of CRPS away, but you sure can help the person by doing just those simple things that most people take for granted. I promise you that your kindness will be so much appreciated. Let them be real with you, and not feel as if they have to “put on a face” just to be near you. If you are a close friend, I will assume that you have already figured this out, but if you have not, here’s your opportunity to do so. Be creative and think about ways that you can help. If you’re not sure, then again just ask the person directly how can I help?
What is not helpful for someone with CRPS (and for people with other chronic conditions)? Treating them as if they are making up their illness or their symptoms. We should not have to prove to you how we feel or what we are going through. Assuming that because they were able to get up and get dressed to head out for errands or such, that they feel fine or that their pain is absent. Life must go on, and most of us still want to be able to go out and do our own errands even though we may feel terrible. It’s good to be able to look at things and be with people outside our own homes. Telling someone how great they look in an attempt to make them feel better. Believe me, if the compliment is truly something you mean, by all means, compliment the person, but what I have found typically is that people don’t really know what to say, so they feel that by telling you that you look great, it must be helpful in some way. Please just treat us instead like you would anyone else. There are many times when told this I do have to resist the urge to be sarcastic and say something like, ” well its good that I don’t look how I actually feel”. Again- this doesn’t mean you shouldn’t compliment the person, but please don’t do so out of the lack of anything else to say to them. Don’t talk about them behind their backs or gossip about them. Don’t feel sorry for them- they don’t need your sympathy, just your understanding. Don’t leave them out of invites to things just because you assume they won’t come. Believe me, we want to go places, and have things to look forward to- just don’t be hurt when we accept, but maybe have to cancel out at the last minute because we just can’t do it that day after all. There are so many other things I could list here, but I hope that by listing these it helps you to understand how these things are not helpful to a person with CRPS (or other chronic illnesses).
I hope this helps you to have a bit more awareness of CRPS, it’s symptoms, and how it affects the person living with it. I am thankful that God has allowed me to use this blog to increase awareness and help others understand. Until next time! Elizabeth
Let us thenapproach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. Hebrews 4:16 NIV
My name is Elizabeth, and I’m new to blogging, so first let me introduce myself. I am a Christian, a wife, a mom to two adult children (one with special needs and one college student who is learning his way in this world), and by profession- a Registered Nurse. For nearly nineteen years, I worked as an elementary school nurse and I felt it was truly my calling, and the mission field that God had given me to show his love to others through my gifts in my profession. But when I developed a debilitating, and disabling rare condition known as CRPS in late 2020, my world came tumbling down around me. No longer could I do all the things I could once do. No longer did I have all my physical abilities. Those losses not only affected my daily life, but eventually led to the subsequent loss of the job I loved so much. I was dealing with all the stuff- the losses, the chronic, constant 24/7 pain along with all the other symptoms of CRPS, and yes, all the anxiety, sadness, and other emotions and feelings that come with such a diagnosis and loss. I found myself just surviving, but not really living, and I knew I would really need to lean on God to help get me through all that had and would come my way. I came to realize that living with a chronic illness was going to be one of the biggest challenges that I’ve faced so far, and I knew I couldn’t do that alone. I’ve first and foremost had to learn to trust God and his plan for me through this. I’ve had to learn when to say no to previous plans, when to give my body and rest, and that it’s ok to rely on friends and family and ask for help when I need it. I made the decision that although I will live with CRPS the rest of my life, that I don’t want it to rule me, so each day I make the choice to step forward and do my best to live my life in this hard, new place I find myself in.
When God started nudging me to start writing a blog, at first I felt like maybe I had misunderstood. I mean, who would read anything written by me? It’s not like I am famous. I’m not a writer- I mean other than some newspaper articles and those required college essays, I’ve never written anything in my life. I’m not an online influencer. I don’t wear all the brand name clothing, and most of the time, you won’t even find me wearing makeup. I’ve often been told that I’m real, and with me “what you see is what you get” so to speak, so I was wondering how could God even begin to use me through this blog? And, although I am known by many in my community, I didn’t feel like I had anything to offer, and truly just thought I was misunderstanding that nudge from the Lord. So, I ignored that nudge for several months, but God just kept sending all the thoughts back to me, and so I started sharing the idea with a few of my close friends, asking them their opinion, and to pray about it with me, so that I could make sure I was hearing Him correctly. I won’t ever forget the first thing that my friend Robin told me. She said “Elizabeth, you may not feel like it, but you are an amazing woman to so many of us, and you have a lot to say that people may need to hear” And that was followed by two other friends who said “if God told you to do it, then you need to listen and do it”. You can’t really get any more direct than that, right? So I did. I began to pray about it, and they prayed about it, and finally after many more months, here I am, embarking on yet another season in my life, both scared and excited for the journey ahead. For months, I have been waiting until it felt like the right time to start the blog, and this past month, that confirmation in timing was given to me. I told God that I will do my best to write the words he wants me to write, and I’ll just trust him to send the readers my way. Even today, while listening to a podcast, I was reminded that God can use me and has chosen me, when I heard Romans 8:11 again, which states (paraphrased)
The spirit of God which raised Christ from the dead, lives in me and gives me life.
I’d love to have you join me on my blogging (and life) journey! I’ll post the things God places on my heart, in the hopes that you will benefit from them, and I hope that my blog gives you a smile, a cry, or even a comfort in the part of life you need it most. I’ll write about all kinds of topics, from things I’ve learned as a woman, a special needs mom, to things I’ve learned from nearly 30 years of marriage. I’ll definitely write about things that God has shown me through my chronic illness, and what I’ve learned through my husbands chronic illness, and so much more! Daily life, just like all seasons, can be so much more fun when you know that someone is right there with you, So I invite you to join me, and walk (or read) through each blog with me, as I hope to share with you all, God’s words of hope, love, and encouragement, dispersed with some fun and humor from my crazy life!
Can’t wait to be here with you again soon, where we will start talking about why I named my blog Grace for every season, and what Grace means for us all!
In His Love,
Elizabeth
Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. Hebrews 4:16 NIV
Grace for Every Season 