We often hear “But you don’t look sick!” but the truth is that most of us try very hard to pass as normal. We rest before going out and take our pain meds at the optimal time. At times we hurt so much and are tired from trying to play healthy that we feel like lying down right then and there, but we (usually) hold it in until we get home to our beds.
2. It’s not all in our heads
Just because you can’t see it, it doesn’t mean it isn’t there. Our pursuit of healthcare is not driven by hypochondria or need for attention, it’s driven by physical discomfort. What we are doing is looking for something to improve our quality of life, and sometimes find the cause of our pain if it is not known.
3. We are not making a mountain out a of molehill.
We are actually in more pain than you think we are in. Studies have shown that, generally speaking, people tend underestimate other people’s pain. This may be because chronic pain itself is difficult to imagine, especially if you have never experienced it firsthand. Even those who have experienced similar types of pain in the past have a difficult time remembering it until they experience it again.
4. No matter how long we’ve been suffering , it still hurts
Having pain for an extended period of time does not give us superpowers to feel it less. However, most people with chronic pain have learned over time to exhibit less pain related behaviors. So you can never really tell how much pain a person is in just by looking at them.
Spoon Theory is an analogy to explain what it’s like to live with a chronic illness such as chronic pain. Christine Miserandino, a woman who lives with lupus, originally coined the term on her website ButYouDontLookSick.com
The basic premise is that when you have a chronic condition you wake up each day with a certain number of spoons. Every time you exert effort — by getting out of bed, cleaning, getting dressed — you lose a spoon. When you run out of spoons, that’s it, the day’s activities are done. This article was written by http://www.chronically-awesome.com/16-things-chronic-pain/ -please follow link to view original.
Chronic pain can be an exhausting condition and this analogy demonstrates the need to budget and the loss of control some people experience. So if we cancel our plans with you, it may be because we ran out of spoons.
Some of us just don’t have the spoons to work on top of our activities of daily living. It can turn our pain from bearable to unbearable. Also, most employers are not eager to hire someone that can only work a few hours a week, is completely unreliable, may or may not show up, and may end up leaving at any point during the shift due to pain flares that make being productive impossible.
8. It’s really hard to get out of bed in the morning… and always!
But that doesn’t mean we still can’t have fun from bed.
So if we can’t make it out you can always bring the party to us!
9. Every minute feels like an eternity when waiting
Whether it’s an hour in a waiting room or 5 minutes in line, every minute drags out when you have to hold an uncomfortable position. It’s not that we are impatient, we would just prefer to use our spoons on more important things.
10. We are not ignoring you
Pain can be very distracting and mentally draining. We try our best to stay sharp and attentive but if we seem not to fully be there please don’t take it personally.
11. We get REALLY excited when we have a good day
Physically feeling good is just about the most exciting feeling in the world cause it means we can finally get stuff done! Its like going on a mini vacation (except for instead of doing nothing we try to do everything)!
12. And get really bummed when we have a bad day and can’t do the things we love
13. It can be hard to find a good doctor
Unfortunately, most health care professionals have little knowledge in pain management because it is rarely part of their training. We often go through many doctors before receiving a proper diagnosis and wait months to years (literally!) to see a pain specialist for treatment. Also, doctors too fall victim to the cognitive error of underestimating other’s pain, and vary few doctors are willing to take the legal risks involved in prescribing pain pills. So if we happen to find a good doctor who listens and is willing to treat us, we feel like we’ve died and gone to heaven! This article was written by http://www.chronically-awesome.com/16-things-chronic-pain/ -follow link to view original.
14. We are not drug seekers
We are pain relief seekers. Sometimes our medical treatment does require the use of opioids or medical marijuana to keep the pain under control and help us resume to as close to a normal life as we can. We take it just like any other medication. We dislike the side effects just like any other medication. And if we find pain relief from another means, we simply stop taking it, despite months or even years of use. This article was written by http://www.chronically-awesome.com/16-things-chronic-pain/ -please follow link to view original.
As the Cleveland Clinic explains: addiction appears to be distinctly uncommon in patients without a prior history of addiction. It’s important to keep in mind that addiction is different than physical dependence/tolerance. Physical dependence can occur with many different types of medications (e.g. beta-blockers), whereas addiction is a psychological phenomenon that is not caused by “chemical hooks” and usually requires a setting very different than that of a chronic pain patient. Unlike street-users, the medical patient is under the supervision of a doctor, is taking the medication in a slow-acting form, and is going home to a life where he or she is surrounded by the people they love.
15. You don’t need to give us suggestions or medical advice
When we are venting about our situation what we really need is to be heard and understood, not given advice. We appreciate the thought, but it can be exhausting hearing advice all the time and frustrating when it doesn’t work. Unless we ask or you have chronic pain yourself, it’s best to leave this to the experts.
16. All we really need is your love and support
Sometimes all you can do is just be there, and that’s saving someone’s life!
Author: Tea Lynn Moore
Tea is a University of Toronto student researcher and professional patient due to Ehlers-Danlos Syndrome and related conditions (Craniocervical Instability, Trigeminal Neuralgia, CRPS, Dysautonomia, Gastroparesis, CSA…) and a writer for various websites! You can follow her work on Facebook: facebook.com/TeaLynnM and Twitter: twitter.com/TeaLynnM
Tea is a University of Toronto student researcher and professional patient due to Ehlers-Danlos Syndrome and related conditions (Craniocervical Instability, Trigeminal Neuralgia, CRPS, Dysautonomia, Gastroparesis, CSA…) and a writer for various websites! You can follow her work on Facebook: facebook.com/TeaLynnMoore
As my son’s children were leaving our house after a visit, I started giving my individual good-byes to each child. I started with my granddaughter, giving her a kiss on the cheek and telling her I loved her. As I did this my three year old grandson started giggling and wiggling with anticipation. “You can kiss me too! Grams, you can kiss me too!”
What a blessing! He is not always so ready with affection but this time he certainly didn’t want to be left out on what was making his sister smile!
We all want to be loved and we are hurt when we think God is playing favorites. The truth is I was going to kiss Eli too. It just happened that I had been standing closer to his sister.
Even the anticipation of seeing someone we love calls out for favor. And rightly so. Love should be expressed to the lover, not hidden away shyly. And how sweet we feel when that anticipation is requited. When we turn to God he is quick to respond. We do not have to worry when the response seems long, when it seems that he is attending to someone else first. We don’t have to line up to get an audience with him. Love is not something that God can run out of nor is it exclusive.
The Bible does give some prerequisites we have to obey before we seek out the joy of his favor:
1.We must forgive others before he will forgive us. Matthew 6:12, forgive us our sins, as we have forgiven those who sin against us. and 15, But if you refuse to forgive others, your Father will not forgive your sins.
2.We must love others if we want God to love us. Matt.5;43-48, You have heard that it was said, ‘YOUSHALL LOVE YOUR NEIGHBOR and hate your enemy.’ 44“But I say to you, love your enemies, 45 so that you may be sons of your Father who is in heaven; for He causes His sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous. 46“For if you love those who love you, what reward do you have? Do not even the tax collectors do the same? 47“If you greet only your brothers, what more are you doing than others? Do not even the Gentiles do the same? 48“Therefore you are to be perfect, as your heavenly Father is perfect.
Lev. 19:17, “Do not nurse hatred in your heart for any of your relatives. Confront people directly so you will not be held guilty for their sin.
1 John 4:20, If anyone says, “I love God,” and hates his brother, he is a liar; for he who does not love his brother whom he has seen cannot love God whom he has not seen.
Love is a powerful emotion which should be expressed and never hidden. But first we must learn to love or we will have nothing positive to express. If you have certain people in mind that you believe you can never love, I understand. Outside of God you cannot love the unlovely.
Seek him out! Cry out to God until he answers you and remember you don’t have to wait your turn. Today is the day to come to him for
When I think of the past I sometimes don’t consider the joyful times. I tend to be an Eeyore. I remember the things I did wrong, wishing I could correct them. Not exactly a Christian virtue. I do, however, hang on to the beautiful time of marriage, the birth of my sons and grandchildren. I easily remember the cute things they said or did.
I also enjoy recalling my salvation and baptism.
This past weekend I left behind all hurtful feelings of the past and took great joy remembering with my family the happiness of our mutual times with my mom.
My mom was buried on Saturday the day before Easter. She would have liked that, being buried on resurrection weekend.
Her oldest grandson is John Goodwin. How special it was for her and me, for all of us, when John became part of our family! He was my ring bearer and I thought he was the most handsome little boy I had ever seen! (He continues to be a good looking man.)
He and his wife Tosha have a son Graham, a daughter Gracen, and a little girl on the way. It was so good to see them, to be with them this weekend. Nanny, as they called her, loved her grandchildren so much!
We had 5 toddlers under the tent at the grave site. It was a joyous time to see the going and coming of generations. Mom would have appreciated it.
Stephen, my younger son, and Judge, my husband, read Scripture at the burial. Seth my older son closed with prayer. I invited everyone to take a rose from the spray on the casket. Mom loved roses and she would have liked that too.
We exchanged “Nanny” stories. If you knew her, you would understand.
We drove back to Knoxville and Sunday we celebrated Easter and the first birthday of our granddaughter, Emmy. What a wonderful day!
I thank all of you who know me for your condolences. Your thoughts, kind words and prayers are appreciated. Blessings to all of you!
We use many words in the Christian church that the world does not even know the meaning of; words that are second nature to those who have been Christians for many years. But to the outside world it just sounds like religiosity. A few translations help with the meaning but sometimes leave out the term that is so precious to us.
Propitiation. The dictionary is sometimes comical, sometimes annoying, sometimes not helpful at all. Propitiation: The act of propitiating. Helpful. Very helpful.
So I looked up the verb instead of the noun and I like the simplicity of the beautiful meaning.
To commemorate the resurrection of our Lord, let’s look at the verses that use propitiation but replace the word with one of it’s meanings : to make favorably inclined. I am not saying that God was not inclined toward us before Easter. He loved us so much that he gave his Son on the cross for us. Yet, with that giving and with it’s forerunner in the Old Testament there is a special powerful love that inclines Him toward us in a remarkable way. The willingness, joyful, painful willingness of sacrificing his Son to make us also be his children. He could have lived happily through eternity as a triune God leaving us to perish. But he chose to become inclined toward us, to put away our sins and forgive by the death and resurrection of his Son through faith. He inclined himself toward us not because we did anything to make ourselves pleasing but He did it without our initiation or goodness.
In some of the following verses I added another translation which uses the sacrificial atonement wording for propitiation. Each one of them speaks of his inclination while we were still sinners.
Sink your eyes and your soul into what God has done for us! Happy and Glorious Easter weekend!
… He becomes so favorably inclined toward us for our sins, and not for ours only
but also for the sins of the whole world. … I John 2:2
… In this is love, not that we have loved God but that he loved us
and sent his Son to be favorably inclined toward us for our sins. …
I John 4:10
… whom God put forward his Son to became favorably inclined by his blood, to be received by faith.
God displayed publicly and made himself favorably inclined in His blood through faith. …
(For God presented Jesus as the sacrifice for sin. People are made right with God when they believe that Jesus sacrificed his life, shedding his blood. This sacrifice shows that God was being fair when he held back and did not punish those who sinned in times past,)
… to be made like his brothers in every respect, so that he might become a merciful
and faithful high priest in the service of God, to make Himself favorably inclined for the sins of the people.
(For this reason he had to be made like them, fully human in every way, in order that he might become a merciful and faithful high priest in service to God, and that he might make atonement for the sins of the people.)
… You shall do no servile work in the time of this day: because it is a day for God’s inclination to be favorable toward us that the Lord your God may be merciful unto you. … Leviticus 23:28
(For this reason he had to be made like them, fully human in every way, in order that he might become a merciful and faithful high priest in service to God, and that he might make atonement for the sins of the people.)
It has been a while, hasn’t it? I ended my last blog on December 22, 2017 by saying Christ has brought me through. He is still carrying me. It turns out that as the pain revved up in my back again after the ablation I was told it could take up to 6 weeks to get relief. Six weeks came and went.
I only got what I perceive as about 30% success. The pain is still heavy but it is dull not so sharp as before the procedure. It limits me significantly. My doctor at the pain clinic has me scheduled for another procedure on April 5 to calm a nerve that is causing much of my pain. From what I have read, this procedure helps 50% of those who do it and for those 50% it can last from one week to one year. Not good odds but when you are suffering, you will reach for any straw.
My right hip has been bugging me for quite a while but I didn’t think it was anything serious. Since January, however, the pain has increased significantly. The hip is giving way on me much more often. I rarely go out without a wheelchair because my hip may cause me to stumble at any time.
We are now preparing for a total hip replacement in April after the back procedure.
I have the world’s greatest physical therapist. He is my age and has known pain himself so he goes at it gently. “It” being exercising and kneading the muscles that support my back and hip. My favorite parts of the session are the ultra sound and electric current.
Judge took off five weeks this year through the family care act (Is that what it’s called?) . It is the federal program that guarantees him a job when he returns to work. With my back and my hip as they were, I could not care for myself. I couldn’t even do crafts or hobbies to pass the time. Crying and moaning? I had plenty of time for those activities. Financially it has been rough. No work, lots of medical bills.
My mom moved into assisted living in October of last year but her dementia progressed rapidly. In January she was put into rehab because of some falls but she was unable to advance very much. She is now in a good nursing home. It is a short walk from our front door (for Judge not for me!). I am so glad we are able to keep her close. She still knows us, loves to get her hair done and listens to Elvis. When I visit I always ask her if she knows me. Last week she said, “Why, yes.” “You’re Judge Pippin’s wife.”
Life can change so quickly. 2017 was a year of increased pain and personal chaos. I am praying that ’18 will be a year of healing and peace.
On a younger note, Eli turned three in March. We with family and school mates celebrated at Premier Athletics. Emmy will be one on Easter Sunday. They bring us so much joy! Seth and Mallory are such good parents. My younger son, Stephen, will graduate this spring. He has worked his butt off putting himself through college. We’re really proud of him!
I don’t know what I will do about the blog. At least for now I thought it would be a good way to catch you up on what’s going on with us.
It seems like a litany of physical complaints. But God is growing us up just like the daffodils in my front bed. Through the cold and snow those daffodils continue to hold their heads high.
I finally had my nerve ablation in my lower spine this afternoon! I am doing ok. SORE. But OK. I have waited months for this, put my life on hold as if it were not on hold already. Many trips to the emergency room. Many nights sitting up crying so Judge could sleep and go to work the next day. Many nights keeping him awake. Now I understand it can take 4 days to 2 weeks for the nerves to die so the healing is rather slow.
I thank you all for baring with me! Friends have brought food, sat with me while cried, toted me to the emergency room, and bought almost all of my Christmas gifts. I ordered a few.
Now it will take a while to get my muscles working again as I seldom have left the condo.
My family ha taken excellent care of me. I owe them one or twenty. Stephen came from Chattanooga to stay a week to care for me so Judge could work. He is a very tenderhearted young man.
Christmas I will be very thankful but mostly sitting around. What joy Eli and Emmy (grandchildren) will bring to us!
Today is Friday and I have no back pain at all. I have cried with joy!
God bless all of you! Merry Christmas! Christ has brought me through!
As some of you know i had a back injury at physical therapy. Come to find out I was misdiagnosed by the surgical nurse and could not get an appointment with the neurosurgeon till last week. It seems, I need a procedure done. I go to a pain clinic but they have maxed out what they can give me at this point. My pain clinic and my neurosurgeon agree with what I need but so many people are involved. The former, my family doctor as well as my lab. I have been on blood thinners for over twenty years and will have to be off for a while before the procedure can be done. I ended up at the emergency room again this morning so when that injection wore off, it wore off badly!!
I called each office involved and everyone except my lab person were out of the office. She was very compassionate and said that tomorrow she will gather the doctor and his nurse and see if we can’t speed things up a bit. It is getting worse so please keep me in me in your prayers.
For two nights this week my husband and I watched a movie about Martin Luther. It is on demand if you have any interest. This isn’t the first Martin Luther movie we have seen. Not Martin Luther King just Martin Luther from whom modern Lutherans draw their name.
Martin Luther did not intend to break from the Catholic church. He only wanted to reform it. And he decried his name being used as a name for churches.
But he could never deny anything he read in Scripture. He was devoted to the Book and to Christ.
There is so much to Luther and to his story but the turning point for this man who wore out the confessional was when Scripture came alive to him. By faith alone! The righteous live by faith alone not by the number of good things they do. He set the Holy Roman Empire ablaze with this insight. It was freedom! And it could not be quieted!
How long has it been since you read a truth in the Bible that you suddenly saw as if you had never seen it before? It is astonishing when it happens, when God pulls back the curtain on our blindness!
Romans 3: 23-24
for all have sinned and fall short of the glory of God, being justified as a gift by His grace through the redemption which is in Christ Jesus;
For it is by grace you have been saved, through faith–and this is not from yourselves, it isthe gift of God–
For we maintain that a man is justified by faith apart from works of the Law.
Almost 3 months ago I injured my back during physical therapy. It was diagnosed as an annular tear, a tear of the tissue surrounding the disk. I was told it would take about 2 months of rest for it to heal itself. The second month, the pain began to escalate. Last Thursday and again on Sunday I was in the emergency room with what felt like a stab to my lower back. Sudden unrelenting pain, so much so that I became panicked that it would happen again. I was afraid to stay at home by myself and Judge was afraid for me. His mother came in the mornings Monday-Wednesday before he left for work so there was no time when I was alone in the mornings. By Thursday my sense of panic began to ease and I was able to stay alone. To be honest, I am still afraid when I get out of my chair. It has been a very rough time for us.
I have another upcoming visit with my neurosurgeon and my pain clinic as well.
I have read a good bit about annular tears (while glued to my chair). They can take up to a year to heal but surgery should intervene after several months. And, they are excruciatingly painful (oh, really?)
I am tired. Tired of expecting the next attack of pain. Tired of being so preoccupied and tired of this chair. Tired of any kind of pressure to fulfill any obligation. Tired of panic.
I am going to take a hiatus from blog writing. I can’t even put two thoughts together.
Thank you for following and reading my blog. That has meant so much to me. If God brings me to mind, please keep me in your prayers. Maybe I will be able to start up the blog again soon.
The year’s at the spring
And day’s at the morn;
Morning’s at seven;
The hillside’s dew-pearled;
The lark’s on the wing;
The snail’s on the thorn: God’s in His heaven— All’s right with the world!
While it is a nice poem, after the hurricanes I am not sure all is right with the world at least from our perspective. I see the destruction and broken hearts but also all the giving hearts and the resilience. Things never seem right with the world on a global perspective even when our private lives may resonate with Robert Browning’s verse.
No matter where you are personally on such a spectrum elsewhere it will be different until Heaven’s glory dawns.
Except for the fact that the year is at the autumn instead of the spring, my life on one level could fit the verse. On the other hand, I have been terribly sick for a few weeks, thus the inconsistency in my blog appearances.
Friday morning my husband had an important meeting at work. He refused to go even though I insisted I was fine. He said he could not leave me in that condition. I still insisted that I could take care of myself. He would not leave and within a couple of hours we were at the emergency room getting pain and steroid injections, increasing the dose of my anti-inflammatory and getting prednisone.
I am doing much better as long as I sit in my recliner and do not move unnecessarily but the side effects from the prednisone were worse than the cure. Had to nix that. As long as I can hold out till Monday. I am praying the orthopedist will give me an effective spinal injection. Please pray with me on that.
I guess that because I have insurance and live in a place where I can readily get medical help makes things all right in my world. Of course, there is no guarantee that I will live with a healthy back after Monday. Fiddling around back there makes me nervous.
I can’t speak for hurricane survivors. I imagine some are extremely grateful while others are devastated.
I appreciate your patience with this rambling post. Comparing my painful injury to the event of a hurricane is not even sensical. So I ramble about my physical pain in the face of others emotional pain.
Please pray for me these next few days, especially on Monday.