From J.E. Tada's A place of healing
So I am finding His Presence, His Comfort and His Faithfulness in this strange and alien country of increased suffering. Much of why God does what He does and heals when He heals remains cloaked in divine mystery. For those of us who do not experience a miracle of physical healing in out present earthly lives, can we hang on? Can we hold onto hope? And more....can we learn what we should learn during our period of captivity?
You can't teach suffering from a textbook....how do you communicate truth so words become a branding iron on a heart of soft wax?
If God sends us on strong path, we are provided strong shoes---Corrie ten Boom
I thought my life pre RA had suffering in it. Now I look at suffering in a totally different light. I had anxiety, depression, loneliness, some jealousy...and they were hard. Now I have pain, more physical suffering. And that seems harder that the previous things I have battled. I know that there are worse things out there than what I am facing. For instance, I have people at home most of the day to help me if I need it.Some people have no one. Ever. Some people have RA and are also facing brain cancers, or sudden deaths of family members, or cheating spouses, lost children. My own branch of suffering is hard, but I know things could be worse. I am grateful that it is what it is, and that God has granted what "escapes" He has, in the form of our renting from my parents' home, so while my husband is gone during the day, I have someone to periodically ask if I need water, or to say hello....even in my sickest moments. I know if I was alone all day this would be much much worse, I would feel too bad to pick up the phone and call anyone....and I would feel too bad to answer the phone if someone called. I would lay alone day after day....only I really would be alone. I would have God, of course, but unless He decided to speak to me, I would not hear another's voice for many many hours of the day and night.
How do you hold onto hope? Do you have a way now that you hold onto hope? I do not know how anyone out there who does not have God holds onto hope. Especially in the face of chronic pain/illness. RA is the sort of disease that takes a lot of trouble to control in the first place, and then, when a treatment is found, poof---it can suddenly stop working.
I have many hard, sad days...but if I so much as pick up one of my Christian authors, or my Bible, or my Suffer Journal and look at the verses and quotes I have begun to gather, I feel the small hope-flame flashing up. I may never be healed, I may never have good RA control...but I have God, and no one will ever extinguish Him.
I studied pain in nursing school. It is a BIG section of study in nursing. We learn all sorts of ways of assessing pain, and medications that treat pain, and non-medical ways of treating pain. I spent a long time studying pain, from the chemical messengers to surgeries to cut nerves to stop pain. No. You CANNOT learn pain from a textbook.That is why I describe my pain as I feel needed in this blog--because RA is not well understood in the general public.
I despise taking medication. I took some pride that I could push through pain relying on an aspirin or two.
I never liked taking meds. I was like Joni in taking very few medications. My anxiety/depression changed that as I took an antidepressant to help get over the issues--a crutch, I called them. Now...I have to have them. Or I would not be able to eat or sleep. Sigh. But...I have learned that I am very very grateful to live in a time where we have the therapies we have now. It used to be that the only therapy for RA was to take a LOT of aspirin...enough to be ototoxic (damaging to hearing), and did not create much protection from the damage of the disease. Now, there are treatments. I thank God that, if He has chosen not to heal me, there are options to make me a little more comfortable. And hopefully productive in the world at large.
My enemy has probably assigned some captain in his lowerarchy of hell to harass me. My wicked adversary knows I have at least become accustomed to quadreplegia---that total and permanent paralysis is no longer the struggle it used to be for me. I believe he views disabilities as his last great stronghold to defame the good character of God. Suffering is that last frontier he exploits to smear God's trustworthiness.
I often think similar thoughts of being personally hunted down. I can say, at least, that I had become "used" to my last great struggle. There were still bad days of anxiety where I needed a major break from people, as social anxiety was the main remainder of the agoraphobia and anorexia I once had. Now, a distant memory, I had learned to use the tools I used on the anxiety for my patients. I could handle anything if I was doing it for someone else---my anxiety would vanish while I handled my hospital rounds, my home visit rounds.
I have always noticed that suffering...especially illness suffering is that which breaks people. I heard people absolutely shun God permanently, sometimes whole households, over the illness of a member of the family. If God refused to heal the person, then by golly, they didn't want to do anything that had any smidge of God in it.That has always broken my heart. The enemy won. He drove them from God by throwing suffering at them. I can't run from God. He has done so much for me that to run from God would be to cut my own throat. He is my everything, and has been for years. It crushes me when people run from God. He is there, with open arms. It may be that He doesn't heal, but He loves so much stronger than anyone we will ever meet here on earth.A child will be sick and ask a parent to make them better...and while a parent does not have the power to cure them, they will hold the sick child and rock them. Have you ever found a sick child that willingly left Mama's arms when they have the flu or a bad earache? No, they will scream, and cling onto mama with every ounce of strength they have....even if mama doesn't "cure" them. All they want is mama close. God does have the power to heal, and sometimes will....but all I want if He doesn't heal me is to have Him hold and rock me while I cry. And I would scream louder if anyone pulled me from the arms of my "Abba, Father"....because He is what is holding me together. So...in the worst of the worst....would any rather snuggle their earache alone in the cold corner of the room while "Abba, Father" sits in a recliner, arms open wide, ready to hold, and comfort with the favorite blanket, toy etc....or sit in His great arms, warm and safe, even if suffering?
Rheumatoid Awareness
Saturday, February 28, 2015
Time
Things are so massively different for me. I am a different person than I was 7 months ago, before RA raised it's ugly deformed massive fire-breathing head. It may as well be a a dragon. It feels like a dragon.
I look at things so differently. What I worried about pre-RA doesn't matter. People that I struggled to forgive for things done to me have vanished. I prayed to forgive each one, and each one is barely even a memory now.
There are so many things I wish I had spent time doing rather than what I picked...more time with people and less time studying all these years. I loved the learning, but when it would have been easier to be active, I wish I had taken advantage of that.
Today is a good day. My pain is under control so far, and I managed to go outside. I am exhausted now, because I am not used to doing things. I so desperately want to do something, anything. I try. And then I feel so terrible I melt onto a chair...and then, if I do not go lay down, I melt in the chair until people ask me what is wrong with me.
I want to walk without limping, gauging the distance and effort and whether my knees will buckle under me...and how to ignore the bulge of my knees as the bursae on each knee push up and out of my kneecaps, making it difficult to bend my knees.
I want to be able to write without holding my pen in bizarre positions to try and make the pain less. I want to breathe normally. I want to not have all day stiffness that comes in the form of feeling like I have ten pounds in each joint from swelling. I want to not spend an hour at night moving my hands and feet onto different points of the bed because they are so hot from inflammation the blankets are already hot in two minutes. I want to be able to sleep in a bed, not a couch. I want to be able to train my dog daily, not every two weeks when I have a "good" day.I want to be able to drive a car.
This probably sounds like whining...but what is strange, I am not writing it with that "tone" in my head. It is more trying to show what life is like now. How quickly it can change with this disease. How I just woke up this way. So, no, I am not whining, but giving a glimpse into what I feel.
Medical professionals in many many instances say "get used to it". Hundreds of people in my support group have stated things which their providers, friends, spouses. I hate that. Never tell anyone that. I just laughed: I have not had a baby, but I imagine telling a laboring mama to "just get used to it" would go over well. Ha!
Much like labor...RA changes daily. Hourly. It changes too much to get "used to". If it stayed in one level, it would be easier to get used to. Ah, well...I digress.
Today is a GOOD day. I am enjoying that. Immensely. I used to sob on good days, because there is only a matter of time before I am sick again. It could be in an hour. I have no idea. But I am happy and thankful to God for RIGHT NOW. That RIGHT NOW is good, pain is controlled, nausea is gone, I am comfortable. I can read a book, do art therapy, sit outside in the sun (which I am going to do when I finish chattering like angry squirrel). Right now is good. And that is what matters. Right now. Not yesterday, not five minutes ago, not ten minutes from now. Just now.
Blessings to you...and I'm going to sit in the sun with my soul singing.
I look at things so differently. What I worried about pre-RA doesn't matter. People that I struggled to forgive for things done to me have vanished. I prayed to forgive each one, and each one is barely even a memory now.
There are so many things I wish I had spent time doing rather than what I picked...more time with people and less time studying all these years. I loved the learning, but when it would have been easier to be active, I wish I had taken advantage of that.
Today is a good day. My pain is under control so far, and I managed to go outside. I am exhausted now, because I am not used to doing things. I so desperately want to do something, anything. I try. And then I feel so terrible I melt onto a chair...and then, if I do not go lay down, I melt in the chair until people ask me what is wrong with me.
I want to walk without limping, gauging the distance and effort and whether my knees will buckle under me...and how to ignore the bulge of my knees as the bursae on each knee push up and out of my kneecaps, making it difficult to bend my knees.
I want to be able to write without holding my pen in bizarre positions to try and make the pain less. I want to breathe normally. I want to not have all day stiffness that comes in the form of feeling like I have ten pounds in each joint from swelling. I want to not spend an hour at night moving my hands and feet onto different points of the bed because they are so hot from inflammation the blankets are already hot in two minutes. I want to be able to sleep in a bed, not a couch. I want to be able to train my dog daily, not every two weeks when I have a "good" day.I want to be able to drive a car.
This probably sounds like whining...but what is strange, I am not writing it with that "tone" in my head. It is more trying to show what life is like now. How quickly it can change with this disease. How I just woke up this way. So, no, I am not whining, but giving a glimpse into what I feel.
Medical professionals in many many instances say "get used to it". Hundreds of people in my support group have stated things which their providers, friends, spouses. I hate that. Never tell anyone that. I just laughed: I have not had a baby, but I imagine telling a laboring mama to "just get used to it" would go over well. Ha!
Much like labor...RA changes daily. Hourly. It changes too much to get "used to". If it stayed in one level, it would be easier to get used to. Ah, well...I digress.
Today is a GOOD day. I am enjoying that. Immensely. I used to sob on good days, because there is only a matter of time before I am sick again. It could be in an hour. I have no idea. But I am happy and thankful to God for RIGHT NOW. That RIGHT NOW is good, pain is controlled, nausea is gone, I am comfortable. I can read a book, do art therapy, sit outside in the sun (which I am going to do when I finish chattering like angry squirrel). Right now is good. And that is what matters. Right now. Not yesterday, not five minutes ago, not ten minutes from now. Just now.
Blessings to you...and I'm going to sit in the sun with my soul singing.
Breathing Space
From A Step Further, J.E. Tada
I sometimes shudder to think where I woould be today if I had not broken my neck. I couldn't see at first why God would possibly allow it, but I sure do now. He has gotten so much mre glory through my paralysis than through my health.
the idea of God getting glory through my suffering makes me mildly happy--probably would more so if at the moment my pain medication was not waning, and throbbing aches are shooting through arms, legs, hands, feet...and if my chest was not being crushed by intercostal rib irritation making each breath a stiff, painful activity. I write each of the passages that I put on this blog in a notebook...followed by Bible verses I read, and sometimes prayers. When I originally wrote that passage in my notebook, it delighted me. So I know it will delight me when my pain is again under more control.
It takes real humility and self-denial to put our pleas for healing before God and then willingly leave the answer with Him.
Do you remember being a child, and asking for something? Anything? It was nearly impossible to not ask and demand and bounce and wiggle and do all the other childish things that we did as children...It is hard to ask God something and wait for an answer, whether it is healing or what job to take. Sometimes it is all about giving God glory and waiting, sometimes it is about giving God glory and picking the job oneself. The main thing is to worship God and try to wait patiently, and ask Him for help with the waiting.
Job 40:1, 7-8. https://www.biblegateway.com/passage/?search=Job+40&version=NIV God understood that when Job demanded why, he was really asking God to be accountable to him. It seems so innocent, but in a sense, to insist such answers from God is to set oneself over God. How absurd! We, like Job, often think God is not treating us fairly. We act as if there were some imaginary court in the sky where God must answer to something called "fairness". But what we forget is that God Himself is the court; and He invented fairness. What made me think that even if He explained all His ways to me I would be able to understand them?
This idea was horrifying to me...but as I mulled it over, I think it is the attitude involved too. Am I being disrespectful when I sometimes ask, with tears on my face, why? I don't think so, and I don't think God is offended...I do not feel disquiet in my soul. And it is true that likely if God gave me the answer, or any of us, we wouldn't understand it. When we try to explain to a two year old why something is, rarely do they comprehend what we tell them...even if they listen all the way through, which they hardly ever do. Something will distract and they miss the point we are telling them. And for that matter....Jesus Himself asked God why He had forsaken Him. I think the point of Job there was showing how little we could understand anyway. I think we are free to ask why, but we still may not get an answer.
When we meet Him face to face, our suffering will have given us at least a tiny taste of what He went through to purchase our redemption.
But to all who did receive Him, who believed His Name, He gave the right to become children of God. John 1:12
For from His Fullness we have all received grace upon grace. John 1:16
And He said to Him, "Truly, truly I say to you, you will see heaven opened and the angels of God ascending and descending on the Son of Man. John 1: 51
I sometimes shudder to think where I woould be today if I had not broken my neck. I couldn't see at first why God would possibly allow it, but I sure do now. He has gotten so much mre glory through my paralysis than through my health.
the idea of God getting glory through my suffering makes me mildly happy--probably would more so if at the moment my pain medication was not waning, and throbbing aches are shooting through arms, legs, hands, feet...and if my chest was not being crushed by intercostal rib irritation making each breath a stiff, painful activity. I write each of the passages that I put on this blog in a notebook...followed by Bible verses I read, and sometimes prayers. When I originally wrote that passage in my notebook, it delighted me. So I know it will delight me when my pain is again under more control.
It takes real humility and self-denial to put our pleas for healing before God and then willingly leave the answer with Him.
Do you remember being a child, and asking for something? Anything? It was nearly impossible to not ask and demand and bounce and wiggle and do all the other childish things that we did as children...It is hard to ask God something and wait for an answer, whether it is healing or what job to take. Sometimes it is all about giving God glory and waiting, sometimes it is about giving God glory and picking the job oneself. The main thing is to worship God and try to wait patiently, and ask Him for help with the waiting.
Job 40:1, 7-8. https://www.biblegateway.com/passage/?search=Job+40&version=NIV God understood that when Job demanded why, he was really asking God to be accountable to him. It seems so innocent, but in a sense, to insist such answers from God is to set oneself over God. How absurd! We, like Job, often think God is not treating us fairly. We act as if there were some imaginary court in the sky where God must answer to something called "fairness". But what we forget is that God Himself is the court; and He invented fairness. What made me think that even if He explained all His ways to me I would be able to understand them?
This idea was horrifying to me...but as I mulled it over, I think it is the attitude involved too. Am I being disrespectful when I sometimes ask, with tears on my face, why? I don't think so, and I don't think God is offended...I do not feel disquiet in my soul. And it is true that likely if God gave me the answer, or any of us, we wouldn't understand it. When we try to explain to a two year old why something is, rarely do they comprehend what we tell them...even if they listen all the way through, which they hardly ever do. Something will distract and they miss the point we are telling them. And for that matter....Jesus Himself asked God why He had forsaken Him. I think the point of Job there was showing how little we could understand anyway. I think we are free to ask why, but we still may not get an answer.
When we meet Him face to face, our suffering will have given us at least a tiny taste of what He went through to purchase our redemption.
But to all who did receive Him, who believed His Name, He gave the right to become children of God. John 1:12
For from His Fullness we have all received grace upon grace. John 1:16
And He said to Him, "Truly, truly I say to you, you will see heaven opened and the angels of God ascending and descending on the Son of Man. John 1: 51
Miracles
From A Step Further, J.E. Tada
It may be good for God to heal one person, and not another, or even to heal a person at one time in his life and not another time. I believe God sometimes still heals miraculously today when people pray. Miracles has a special place for the time of Christ-proving Christ to be be who He was.
I have heard stories from mission trips of healings; people were barely able to even describe the event because they saw the massively obvious broken bone shift into place. The still obvious shock on the person's face makes me believe them. I have heard of visions of Jesus confronting non believers of various faiths stopping them from their persecution of the faith as much as Paul was stopped on the road. I do not doubt that miracles happen, and that God can heal. But He does not always heal everyone, and that does not mean a weakness of faith---look at Paul himself! He had a "thorn" in his side that was not removed; God's grace was to be sufficient for Paul, not the act of healing. Perhaps if some of us are healed, it would be worse, in that we would become prideful, or less reliant on God...it would create too strong a chance of drifting, even with a miraculous healing.
I cannot say how I might be if I were healed. I would imagine my faith would still remain stronger than it was.My faith has remained strong following other "catastrophes", such as the anxiety and depression I fought earlier in my life. But, as yet, it does not appear to be God's will to heal me. He will usually grant me the strength to handle it, when I stupidly remember to ask for help. So I obviously have not learned to completely lean on God's strength, since I still have to remember to ask for the help I desperately need.
Phony apostles ran amok, how were the real apostles to distinguish themselves genuine? Paul clarifies in Corinthians--they can know he is real because of consistent life and success of his ministry with them. Miracles had the definite purpose of spotlighting those men whom God had appointed to begin and lead His church.
After looking everywhere else fr the reason why my prayers for healing weren't answered, I was forced to return to God's Word and take a closer look...has it ever really hit you that the reason you are n your present condition is that God, in His Wisdom, wills it to be so? For God to answer our prayers, they must be in line with His will.
However, one must remember Abraham, who by calm discussion, changed God's mind regarding Sodom and Gomorrah. His Will had been to not give anyone a chance out of the town, but He allowed Lot the chance to get out of the cities before their destruction by Abraham's discussion to search the city for one good man.
The pages of scripture team with good things that can come from suffering. Pain and discomfort get our minds off of temporary things of this world and force us to think about God. They drive us to pull His Word off the shelf far more than usual and pay more attention when we do.
I certainly spend more time either in the Word or with books speaking of God. More than I have in years. I spent the last many years studying, but studying books for school. Being too tired to do much church attendance, although I was able to attend Bible Study most of the times. I have been glad to study more about God---I did not get the chance to go to Bible College since I got married and immediately went to work full time. I so regret working as much as I have....I was working so much, practically taking any extra work I could at the home health nurse job...and running from the other job as soon as I could leave because of the stress. I had worked so hard to get through nursing school, and then got married in a month and started a job a week later. I should have taken two to three months off. And just breathed. Caught up on the years of missing sleep. I regret that so much now. Yes, I am glad to spend more time studying God, but sometimes this disease makes me so tired I can't study as effectively as I could. Sometimes I can't remember what I should be able to from the exhaustion. I was able to study so much and retain so much nursing info, but I just can't retain what I hope to retain of Bible things. I want to retain (with a grain of salt) the cultural things I learn, or other items like that, and I just can't as well.
I am starting a long acting pain medication. We are having a little trouble getting the right dose. One dose is too strong and makes me loopier than all get out, the next is so weak that I am almost in worst agony because I go from no pain (and very loopy) to what pain I had before...and I see now how strong that pain really is. It is so much worse than it was when I first got this pain.
I was reading a book called Confronting Chronic Pain by a pain specialist MD and Psychiatrist...and I was struck by the truthful statement I had not considered...acute pain (like toothache, paper cut, etc) shows our body to take a break, be careful, you are injured. Chronic pain is useless. It is not telling you anything, really. The information is old news, and old back injury, or RA. There is no real point to the pain, because nothing much can be done about it. Resting doesn't make a difference, if anything, it makes it worse.
I am trying to force myself to get up regardless. Sometimes all I manage to do is get up, go upstairs, look out a window, and fumble my way back to the coolness of the basement which soothes my instant fever. Sometimes I manage to visit someone for a while. My goal is to do that, and to sit outside on a bench for 5 minutes every day.
What a thing...if I knew I would be like this years ago...I wouldn't have done nursing school. Maybe still have done some classes, because I love school. But I wouldn't have done all that stress when now I have no idea if I can ever go back. My medical leave is up in less than a month...then I assume I have to resign the job I loved. So I wish I had just worked at my favorite coffee stand and just had more fun.
I wish I had not been so afraid of everything--although I think that is from pain I did not register very well.I wish I had felt more sure of doing things, going places. Now I can't drive, how could I go anywhere? Maybe the new medications will help; my injections, my nausea meds...
I didn't want to do this. No one wants to face this sort of thing. What's funny is how scared I was of this sort of thing...I would never read about Joni because I was sure I would end up like her....I would never read this novel we have about the author who went blind....and yes, I did not exactly get those things, but I do have a chronic condition, and just about got my worst fear.
God is here though. Right with me.
It may be good for God to heal one person, and not another, or even to heal a person at one time in his life and not another time. I believe God sometimes still heals miraculously today when people pray. Miracles has a special place for the time of Christ-proving Christ to be be who He was.
I have heard stories from mission trips of healings; people were barely able to even describe the event because they saw the massively obvious broken bone shift into place. The still obvious shock on the person's face makes me believe them. I have heard of visions of Jesus confronting non believers of various faiths stopping them from their persecution of the faith as much as Paul was stopped on the road. I do not doubt that miracles happen, and that God can heal. But He does not always heal everyone, and that does not mean a weakness of faith---look at Paul himself! He had a "thorn" in his side that was not removed; God's grace was to be sufficient for Paul, not the act of healing. Perhaps if some of us are healed, it would be worse, in that we would become prideful, or less reliant on God...it would create too strong a chance of drifting, even with a miraculous healing.
I cannot say how I might be if I were healed. I would imagine my faith would still remain stronger than it was.My faith has remained strong following other "catastrophes", such as the anxiety and depression I fought earlier in my life. But, as yet, it does not appear to be God's will to heal me. He will usually grant me the strength to handle it, when I stupidly remember to ask for help. So I obviously have not learned to completely lean on God's strength, since I still have to remember to ask for the help I desperately need.
Phony apostles ran amok, how were the real apostles to distinguish themselves genuine? Paul clarifies in Corinthians--they can know he is real because of consistent life and success of his ministry with them. Miracles had the definite purpose of spotlighting those men whom God had appointed to begin and lead His church.
After looking everywhere else fr the reason why my prayers for healing weren't answered, I was forced to return to God's Word and take a closer look...has it ever really hit you that the reason you are n your present condition is that God, in His Wisdom, wills it to be so? For God to answer our prayers, they must be in line with His will.
However, one must remember Abraham, who by calm discussion, changed God's mind regarding Sodom and Gomorrah. His Will had been to not give anyone a chance out of the town, but He allowed Lot the chance to get out of the cities before their destruction by Abraham's discussion to search the city for one good man.
The pages of scripture team with good things that can come from suffering. Pain and discomfort get our minds off of temporary things of this world and force us to think about God. They drive us to pull His Word off the shelf far more than usual and pay more attention when we do.
I certainly spend more time either in the Word or with books speaking of God. More than I have in years. I spent the last many years studying, but studying books for school. Being too tired to do much church attendance, although I was able to attend Bible Study most of the times. I have been glad to study more about God---I did not get the chance to go to Bible College since I got married and immediately went to work full time. I so regret working as much as I have....I was working so much, practically taking any extra work I could at the home health nurse job...and running from the other job as soon as I could leave because of the stress. I had worked so hard to get through nursing school, and then got married in a month and started a job a week later. I should have taken two to three months off. And just breathed. Caught up on the years of missing sleep. I regret that so much now. Yes, I am glad to spend more time studying God, but sometimes this disease makes me so tired I can't study as effectively as I could. Sometimes I can't remember what I should be able to from the exhaustion. I was able to study so much and retain so much nursing info, but I just can't retain what I hope to retain of Bible things. I want to retain (with a grain of salt) the cultural things I learn, or other items like that, and I just can't as well.
I am starting a long acting pain medication. We are having a little trouble getting the right dose. One dose is too strong and makes me loopier than all get out, the next is so weak that I am almost in worst agony because I go from no pain (and very loopy) to what pain I had before...and I see now how strong that pain really is. It is so much worse than it was when I first got this pain.
I was reading a book called Confronting Chronic Pain by a pain specialist MD and Psychiatrist...and I was struck by the truthful statement I had not considered...acute pain (like toothache, paper cut, etc) shows our body to take a break, be careful, you are injured. Chronic pain is useless. It is not telling you anything, really. The information is old news, and old back injury, or RA. There is no real point to the pain, because nothing much can be done about it. Resting doesn't make a difference, if anything, it makes it worse.
I am trying to force myself to get up regardless. Sometimes all I manage to do is get up, go upstairs, look out a window, and fumble my way back to the coolness of the basement which soothes my instant fever. Sometimes I manage to visit someone for a while. My goal is to do that, and to sit outside on a bench for 5 minutes every day.
What a thing...if I knew I would be like this years ago...I wouldn't have done nursing school. Maybe still have done some classes, because I love school. But I wouldn't have done all that stress when now I have no idea if I can ever go back. My medical leave is up in less than a month...then I assume I have to resign the job I loved. So I wish I had just worked at my favorite coffee stand and just had more fun.
I wish I had not been so afraid of everything--although I think that is from pain I did not register very well.I wish I had felt more sure of doing things, going places. Now I can't drive, how could I go anywhere? Maybe the new medications will help; my injections, my nausea meds...
I didn't want to do this. No one wants to face this sort of thing. What's funny is how scared I was of this sort of thing...I would never read about Joni because I was sure I would end up like her....I would never read this novel we have about the author who went blind....and yes, I did not exactly get those things, but I do have a chronic condition, and just about got my worst fear.
God is here though. Right with me.
Thursday, February 26, 2015
Enbrel 2.0
The shipping pharmacy that I will get Enbrel from is shipping out free samples next week. I am not sure if they are arriving on the 3rd or being shipped on the 3rd, but hey, we are getting some stronger medication that may do something.I have yet to meet anyone with as active of RA get much relief out of the simpler meds. I hung on thinking (and hoping) that maybe I didn't have RA, and that these meds would work. The Minocin (minocycline) helped a fair amount, but it just isn't kicking the pain away. Or really the nausea.
The drug companies lie, of course. Enbrel may make some people act like those on TV...the in-absolute-agony to playing-tennis people...but not everyone does that. I am hoping for that, but will be happy with half better than I am. Or even less if I have to settle.
Worked on forcing myself out of bed and up today. I still melted and laid down whether I wanted to or not, but I tried. I mean, there is the chance that I never get any better relief than this. So I took nausea meds and pushed as best I could.
I am so afraid of being like this the rest of my life. Or worse. This is a progressive disease.
The drug companies lie, of course. Enbrel may make some people act like those on TV...the in-absolute-agony to playing-tennis people...but not everyone does that. I am hoping for that, but will be happy with half better than I am. Or even less if I have to settle.
Worked on forcing myself out of bed and up today. I still melted and laid down whether I wanted to or not, but I tried. I mean, there is the chance that I never get any better relief than this. So I took nausea meds and pushed as best I could.
I am so afraid of being like this the rest of my life. Or worse. This is a progressive disease.
Never Alone
From A Step Further:
We should never be alone when we suffer...we should never build a self imposed wall around us that allows no one inside to see what we're going through and to hurt with our hurts. People who are suffering are in desperate need of deep and meaningful conversations with other believers.
I have vaguely walled myself off. I created this blog to vent, because I had some bad experiences venting on other forms of social media. This way, those who care for me can check on me, and let me know either here in comments or via FB emails, calls, texts what they think. I was very very walled off for a while. Really, what changes? My emotions still go through the same circle of stages of mourning over and over again. So I rehash the same emotions...much like many patients I had in my past.
It takes time for a person to realize that he never will walk again, or that he really does have terminal cancer, or whatever. We have the freedom to feel sorrow and grief....no one would appreciate being told upon the arrival of a stillborn child "The baby is in heaven"...it's too soon. Time to mourn and process is needed, and allowing others this time is crucial Nothing is more devastating than an "attack" on the process of mourning.
I have had so many people in my life dealing with death, or sudden divorces...friends, or almost total strangers. I never told the newly divorced person "you can find someone else now!" I merely hugged them close, and let them cry freely without judgement.
I spend many "watches of the night" crying to God...mourning being in pain, or having had a nausea filled day to the point of not being able to eat. I ask Him, much like people asked me "Why? Why did he leave me?" from their divorces. I ask God why I am ill, even if I don't really want an answer. I do want to know if this will ever be useful to anyone else, or useful for me besides learning patience. So, I cry out to Him, imagining Him standing/sitting at my sick bed, stroking my hair, wiping tears from my teat-stained face, holding me safe in His arms. I cannot say why He has not chosen to heal me. It may not be His plan. For one, I have that new dream of oncology nursing, something I had never considered.
Mourning isn't enough. When your body is racked with pain, your heart is breaking with sorrow, your mind is a mass of confusion, and our soul is weighted with guilt, you have a need to know there is someone, anyone, who understands what you're going through. God uses those soothing Psalms to turn our tears of agony into tears of release.
God certainly can, and sometimes does, heal in miraculous ways today. The Bible does not teach that He will always heal those who come in faith.
(Paul for one--if he did not have adequate faith to be healed, who would)
We should never be alone when we suffer...we should never build a self imposed wall around us that allows no one inside to see what we're going through and to hurt with our hurts. People who are suffering are in desperate need of deep and meaningful conversations with other believers.
I have vaguely walled myself off. I created this blog to vent, because I had some bad experiences venting on other forms of social media. This way, those who care for me can check on me, and let me know either here in comments or via FB emails, calls, texts what they think. I was very very walled off for a while. Really, what changes? My emotions still go through the same circle of stages of mourning over and over again. So I rehash the same emotions...much like many patients I had in my past.
It takes time for a person to realize that he never will walk again, or that he really does have terminal cancer, or whatever. We have the freedom to feel sorrow and grief....no one would appreciate being told upon the arrival of a stillborn child "The baby is in heaven"...it's too soon. Time to mourn and process is needed, and allowing others this time is crucial Nothing is more devastating than an "attack" on the process of mourning.
I have had so many people in my life dealing with death, or sudden divorces...friends, or almost total strangers. I never told the newly divorced person "you can find someone else now!" I merely hugged them close, and let them cry freely without judgement.
I spend many "watches of the night" crying to God...mourning being in pain, or having had a nausea filled day to the point of not being able to eat. I ask Him, much like people asked me "Why? Why did he leave me?" from their divorces. I ask God why I am ill, even if I don't really want an answer. I do want to know if this will ever be useful to anyone else, or useful for me besides learning patience. So, I cry out to Him, imagining Him standing/sitting at my sick bed, stroking my hair, wiping tears from my teat-stained face, holding me safe in His arms. I cannot say why He has not chosen to heal me. It may not be His plan. For one, I have that new dream of oncology nursing, something I had never considered.
Mourning isn't enough. When your body is racked with pain, your heart is breaking with sorrow, your mind is a mass of confusion, and our soul is weighted with guilt, you have a need to know there is someone, anyone, who understands what you're going through. God uses those soothing Psalms to turn our tears of agony into tears of release.
God certainly can, and sometimes does, heal in miraculous ways today. The Bible does not teach that He will always heal those who come in faith.
(Paul for one--if he did not have adequate faith to be healed, who would)
How Does a Dr Office Lose a RX? Very easily...
I am all ready to have Enbrel shipped to my door....except the shipping pharmacy doesn't know where the script is, and the dr office doesn't know where they sent the script. oooops. lol. oh, the joys of dealing with the patient side of being in medicine.Let's just say I liked being more in the know.You never get to know as much as a patient as you do when you are the medical person, regardless of what is said.
Found the lost script! It's still waiting in the office, as I had had to remember to change the insurance card at the office. I hate trips--I forget to do things because of being too tired and icky feeling.
Found the lost script! It's still waiting in the office, as I had had to remember to change the insurance card at the office. I hate trips--I forget to do things because of being too tired and icky feeling.
Tuesday, February 24, 2015
Elbows
My elbows are killing me. And my feet. And my hands. And every breath is like breathing with two of my nieces on my chest with sand in between my ribs. And my neck muscles are in spasm.
No sleep now, instead of constant sleep. Sometimes that's the battle we play. Sleep that won't stop followed by sleep that won't start.
I miss life. It's a honest statement. I miss doing simple day to day things. I'm still trying to learn and accept my new life. I'm reading all I can on dealing with pain and whatnot...but when it comes right down to it, you still have to learn your own way to manage. I'm still learning mine.
No sleep now, instead of constant sleep. Sometimes that's the battle we play. Sleep that won't stop followed by sleep that won't start.
I miss life. It's a honest statement. I miss doing simple day to day things. I'm still trying to learn and accept my new life. I'm reading all I can on dealing with pain and whatnot...but when it comes right down to it, you still have to learn your own way to manage. I'm still learning mine.
Monday, February 23, 2015
Pain Level
I think my pain level is what is making me feel so sick and unable to stand food or activities. Have a doctor appointment in the morning, and I will talk to him about what we can do.
To Care
Crazy isn't it...but at the same moment that my fingers, elbows, knees and feet ache with broken glass, and intermittent nausea and fevers...I want to take care of someone who is sick as me. I want to be there, offering all of my strength, and all the strength God lends me.
Doesn't seem to be in the plan. I hope I help my sister who is ill with ra...but she often does more for me than I for her. I miss the fight to help others feel better. I do not like being the one who has to fight to feel better.
Maybe if I ever work again, I will even change paths. I never liked oncology nursing, but I am beginning to be very interested in it. Maybe because my pain can be similar to cancer pain, and the chronic exhaustion and nausea...I feel that, with God's strength, it would be a good path for me. I never thought I would be interested ever in onc nursing...but I am wildly interested now. Maybe even hospice. I was too weak to take those in before. The massive illness and sadness that can be with those two. I think that I could handle it, if that is what God plans for me...if I get well enough to work again.
Isn't it funny though...to just suddenly want to care for someone like I used to. And a sicker population at that. May God let this new dream happen....?
Doesn't seem to be in the plan. I hope I help my sister who is ill with ra...but she often does more for me than I for her. I miss the fight to help others feel better. I do not like being the one who has to fight to feel better.
Maybe if I ever work again, I will even change paths. I never liked oncology nursing, but I am beginning to be very interested in it. Maybe because my pain can be similar to cancer pain, and the chronic exhaustion and nausea...I feel that, with God's strength, it would be a good path for me. I never thought I would be interested ever in onc nursing...but I am wildly interested now. Maybe even hospice. I was too weak to take those in before. The massive illness and sadness that can be with those two. I think that I could handle it, if that is what God plans for me...if I get well enough to work again.
Isn't it funny though...to just suddenly want to care for someone like I used to. And a sicker population at that. May God let this new dream happen....?
Sunday, February 22, 2015
Yuck
I am running a low fever, my joints feel like they have glass in them and are being jumped on by someone...and I can't eat more than a few mouthfuls because I feel so nauseated.
Saturday, February 21, 2015
Invalid
While I have read the word hundreds of times in many books and in the Bible...I hate the word invalid now.
I suppose if you get right down to it, at many stages of this disease of mine, because it is out of control, I am an invalid...I can no longer drive a car, etc...which seems to classify as that. Especially compared to the independence I demanded a few short months ago. I even often demanded to drive rather than my husband, to be that independent and that in control of what was happening.
Gee, seems not surprising I have to be so dependent on others at this point, in a way...my greatest fault could be the fact I wanted 100% control of everything to keep my anxiety and stress under control. I cannot have that control now, because I cannot control my own body.
I have to rely on others more than I have in years. I am inordinately grateful I have people who will drive me to dr appointments, pick up library holds and medications, or buy more colored pencils and candy to make my time easier. I cannot express my gratitude in a million years.
I am grateful beyond words to my God, Who has not healed me, though I still ask faithfully, but does often grant answers to my requests for less pain, less nausea and more strength and peace...and honestly, with those answers, it makes my RA bearable. I can never ever thank God enough for His answering those requests for me...or for answering requests I have made for my RA support friends to have peace when scarier, worse health issues appear. He is so good to us, even in the midst of our pains from this sinful fallen world.
I still hate the word invalid now. Because I read it In-Valid...as in, I am no longer valid. I have become a burden to others, and I am no longer the nurse, the wife, the homemaker, the friend I was. While this sounds like self pity, it isn't exactly...more how I hate the word. Because I do feel no longer valid. Somehow I am further from the world than I was before. An outcast.
But we of the faith really are all outcasts...we do not belong of this world. In a way, being an "invalid" shows you how much we are not of this world. How much life really is the book of Ecclesiastes; the world is meaningless. I see that so much more now than I did before...I had merely glimpses of the meaninglessness of the world before being invalided. Unless God is the main focus of our every breath, we are nothing. Maybe we are all not valid to the world, because we are crazy to have faith in God. In that case, I will gladly take the title of invalid...I do not want to be considered valid in the world...it is such a wicked and sad place, groaning under it's load of sin and destruction and longing for the end. I only want to be Valid in the Land of the Lord.
I think we forget and get so wrapped up in this world that we do not actually belong here. What a wonder our real home must be.
I suppose if you get right down to it, at many stages of this disease of mine, because it is out of control, I am an invalid...I can no longer drive a car, etc...which seems to classify as that. Especially compared to the independence I demanded a few short months ago. I even often demanded to drive rather than my husband, to be that independent and that in control of what was happening.
Gee, seems not surprising I have to be so dependent on others at this point, in a way...my greatest fault could be the fact I wanted 100% control of everything to keep my anxiety and stress under control. I cannot have that control now, because I cannot control my own body.
I have to rely on others more than I have in years. I am inordinately grateful I have people who will drive me to dr appointments, pick up library holds and medications, or buy more colored pencils and candy to make my time easier. I cannot express my gratitude in a million years.
I am grateful beyond words to my God, Who has not healed me, though I still ask faithfully, but does often grant answers to my requests for less pain, less nausea and more strength and peace...and honestly, with those answers, it makes my RA bearable. I can never ever thank God enough for His answering those requests for me...or for answering requests I have made for my RA support friends to have peace when scarier, worse health issues appear. He is so good to us, even in the midst of our pains from this sinful fallen world.
I still hate the word invalid now. Because I read it In-Valid...as in, I am no longer valid. I have become a burden to others, and I am no longer the nurse, the wife, the homemaker, the friend I was. While this sounds like self pity, it isn't exactly...more how I hate the word. Because I do feel no longer valid. Somehow I am further from the world than I was before. An outcast.
But we of the faith really are all outcasts...we do not belong of this world. In a way, being an "invalid" shows you how much we are not of this world. How much life really is the book of Ecclesiastes; the world is meaningless. I see that so much more now than I did before...I had merely glimpses of the meaninglessness of the world before being invalided. Unless God is the main focus of our every breath, we are nothing. Maybe we are all not valid to the world, because we are crazy to have faith in God. In that case, I will gladly take the title of invalid...I do not want to be considered valid in the world...it is such a wicked and sad place, groaning under it's load of sin and destruction and longing for the end. I only want to be Valid in the Land of the Lord.
I think we forget and get so wrapped up in this world that we do not actually belong here. What a wonder our real home must be.
Friday, February 20, 2015
Whispers
From A Step Further by J.E. Tada
God whispers to us in our pleasures, speaks to our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world.
Worrying, complaining, and bitterness were often temptations to me as I struggled with the meaning of my paralysis in my early hospital days. Committing ourselves to our faithful Creator--that's trusting God, continuing to do good--that's obeying Him.
I still have so much trouble with not complaining--most of these blog posts have some note of complaint, if not full complaint. I so thought when this fell upon me that it would go away, or be less than it is...and, shockingly enough, I am a sinner, so I will continue to work on decreasing my complaints, worries, etc...
When I speak of having faith in God during our times of suffering and crisis, I am not talking about an emotion. Trusting God is not necessarily having trustful feelings. It is an act of the will...trusting God is reasoning with yourself to act upon what you know in your head to be true, even though you do not feel it to be true.
There are times when I am so unhappy that it is an effort to pray, and to ask God yet again for the strength and willingness to face the day, especially the days I cannot do much from exhaustion. I am not so much mad at God but angry at the situation, and why I have to go through it. I desperately WANT to trust God, while half of me shouts to NOT trust---I assume this is the world whispering in my ear, because it dies quickly once I actually ask for help.
How could this crazy paralysis possibly fit into a pattern of good for my life? I felt as though the despair of my soul was as bleak as the gray hospital walls which surrounded me.
I so cry this sentence out five hundred times a day, substituting paralysis with RA. Although, paralysis would work, in that I feel that my life is paralyzed. How could this RA work for good, or be helpful to me or anyone else? God uses all for good...but I know from previous experience that it may be a decade before I discover the good that comes from this disease. That is hard to take...considering the completely different discomfort of RA. If there is something good that comes of this, it seems more worthwhile....otherwise....so meaningless.
Self pity never helps anyone. It only magnifies a person's own misery. And it certainly doesn't help God. Although it may seem God is being grossly unfair and giving us a heavier cross to bear, we really don't know what the person next door has to live with. He will give us the unique Grace to bear our unique cross.
I try and stop myself from pitying myself--again, when I ask God for strength, my pity often vanishes. I actually cannot think of a time in which God has not vanished all negative emotions with this disease when asked for Help---and days I ask continually for help have been my happiest.
Surely God is my help; the Lord is the One who sustains me. Ps 54:4
God whispers to us in our pleasures, speaks to our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world.
Worrying, complaining, and bitterness were often temptations to me as I struggled with the meaning of my paralysis in my early hospital days. Committing ourselves to our faithful Creator--that's trusting God, continuing to do good--that's obeying Him.
I still have so much trouble with not complaining--most of these blog posts have some note of complaint, if not full complaint. I so thought when this fell upon me that it would go away, or be less than it is...and, shockingly enough, I am a sinner, so I will continue to work on decreasing my complaints, worries, etc...
When I speak of having faith in God during our times of suffering and crisis, I am not talking about an emotion. Trusting God is not necessarily having trustful feelings. It is an act of the will...trusting God is reasoning with yourself to act upon what you know in your head to be true, even though you do not feel it to be true.
There are times when I am so unhappy that it is an effort to pray, and to ask God yet again for the strength and willingness to face the day, especially the days I cannot do much from exhaustion. I am not so much mad at God but angry at the situation, and why I have to go through it. I desperately WANT to trust God, while half of me shouts to NOT trust---I assume this is the world whispering in my ear, because it dies quickly once I actually ask for help.
How could this crazy paralysis possibly fit into a pattern of good for my life? I felt as though the despair of my soul was as bleak as the gray hospital walls which surrounded me.
I so cry this sentence out five hundred times a day, substituting paralysis with RA. Although, paralysis would work, in that I feel that my life is paralyzed. How could this RA work for good, or be helpful to me or anyone else? God uses all for good...but I know from previous experience that it may be a decade before I discover the good that comes from this disease. That is hard to take...considering the completely different discomfort of RA. If there is something good that comes of this, it seems more worthwhile....otherwise....so meaningless.
Self pity never helps anyone. It only magnifies a person's own misery. And it certainly doesn't help God. Although it may seem God is being grossly unfair and giving us a heavier cross to bear, we really don't know what the person next door has to live with. He will give us the unique Grace to bear our unique cross.
I try and stop myself from pitying myself--again, when I ask God for strength, my pity often vanishes. I actually cannot think of a time in which God has not vanished all negative emotions with this disease when asked for Help---and days I ask continually for help have been my happiest.
Surely God is my help; the Lord is the One who sustains me. Ps 54:4
Change
From A Step Further, J.E. Tada
Don't fall into the trap of comparing your situation to others.
---I consider the verses in which Jesus talks to Peter about not worrying about John's life; that is, if Jesus allows John to live until His return, what is it to Peter? Our lives are very unique, even with the more difficult things...we cannot look at other people in whatever suffering or trial they may be in, we should not judge.
I found it difficult before I got sick to understand my sister's walk with RA. I have decided that one, the disease is different for everyone, for some it is more difficult, for some less...two, I think that there may be more than one type of Rheumatoid Arthritis, but that the medical community has not found and separated these. My own little theory.
I regret how I thought Rheumatoid Arthritis was, based on my readings. I also regret how many diseases appeared to me.
My patients nearly always found me compassionate, which I appreciate---but now I have such a deeper appreciation for health.
I have been reading books about cancer survivors (Reconstructing Natalie being the only one I have), and I feel for the character more than I did before. The devastation of being suddenly not who you thought you were. It is certainly life changing.
Contentment is not found in circumstances. Contentment is found in a Person, the Lord Jesus. If I am to have grace and peace--true contentment--in my life at all, it will be because it flowed into my soul from the God and Father who loves me. The grace of God is abundant, boundless, inexhaustible, available and free. A mighty underground river, rushing clear and fresh, but not cheap. We must seek it.
Did that mean I got back the use of my arms or hands? No. But drawing on His Grace, I did learn contentment.
Contentment is something that wavers in and out for me. Because my disease varies daily, hourly, it is hard to become "used" to and settle with the illness. However, I do have the blessing of still moving under my own power, something Joni did not have. I am still working on asking constantly for the grace, power and strength of the Father to be able to function contently. When I do remember to ask, God has given freely and kindly to fulfill my sense of peace, grace and contentment. I am a sinner, and forget to lean heavily on the One unfailing therapy I have. We are such fools to forget we have a Loving Father who is more than willing to shower us with the energy to handle whatever has been given us by the prince of the world, and thus create good from evil.
When Christ gives us strength to tackle a painful situation, gaining contentment doesn't mean losing discomfort or sorrow.
I think of Jesus in the Garden the night before the betrayal...and how He cried out to the Father to have the cup removed, as I have cried night after night. The Christ's cup could not be removed, and while the author does not describe it, I feel certain that the Father gave His Son the strength to continue onward...
I continue to hope for healing, or lessening of my disease so that I can have a more active life...often I catch myself saying "a fuller life". Really, though, when I focus on and praise God, there is no further fulfillment of life. That is what we are for, to have a deep relationship with out Lord. But I still long for that "fuller life" of driving a car, cleaning house, visiting friends whenever I want to.
By day the Lord directs His love, at night His song is with me--a prayer to the God of my Life. Ps 42:8
For this God is our God forever and ever He will be our guide even to the end. Ps 48:14
Don't fall into the trap of comparing your situation to others.
---I consider the verses in which Jesus talks to Peter about not worrying about John's life; that is, if Jesus allows John to live until His return, what is it to Peter? Our lives are very unique, even with the more difficult things...we cannot look at other people in whatever suffering or trial they may be in, we should not judge.
I found it difficult before I got sick to understand my sister's walk with RA. I have decided that one, the disease is different for everyone, for some it is more difficult, for some less...two, I think that there may be more than one type of Rheumatoid Arthritis, but that the medical community has not found and separated these. My own little theory.
I regret how I thought Rheumatoid Arthritis was, based on my readings. I also regret how many diseases appeared to me.
My patients nearly always found me compassionate, which I appreciate---but now I have such a deeper appreciation for health.
I have been reading books about cancer survivors (Reconstructing Natalie being the only one I have), and I feel for the character more than I did before. The devastation of being suddenly not who you thought you were. It is certainly life changing.
Contentment is not found in circumstances. Contentment is found in a Person, the Lord Jesus. If I am to have grace and peace--true contentment--in my life at all, it will be because it flowed into my soul from the God and Father who loves me. The grace of God is abundant, boundless, inexhaustible, available and free. A mighty underground river, rushing clear and fresh, but not cheap. We must seek it.
Did that mean I got back the use of my arms or hands? No. But drawing on His Grace, I did learn contentment.
Contentment is something that wavers in and out for me. Because my disease varies daily, hourly, it is hard to become "used" to and settle with the illness. However, I do have the blessing of still moving under my own power, something Joni did not have. I am still working on asking constantly for the grace, power and strength of the Father to be able to function contently. When I do remember to ask, God has given freely and kindly to fulfill my sense of peace, grace and contentment. I am a sinner, and forget to lean heavily on the One unfailing therapy I have. We are such fools to forget we have a Loving Father who is more than willing to shower us with the energy to handle whatever has been given us by the prince of the world, and thus create good from evil.
When Christ gives us strength to tackle a painful situation, gaining contentment doesn't mean losing discomfort or sorrow.
I think of Jesus in the Garden the night before the betrayal...and how He cried out to the Father to have the cup removed, as I have cried night after night. The Christ's cup could not be removed, and while the author does not describe it, I feel certain that the Father gave His Son the strength to continue onward...
I continue to hope for healing, or lessening of my disease so that I can have a more active life...often I catch myself saying "a fuller life". Really, though, when I focus on and praise God, there is no further fulfillment of life. That is what we are for, to have a deep relationship with out Lord. But I still long for that "fuller life" of driving a car, cleaning house, visiting friends whenever I want to.
By day the Lord directs His love, at night His song is with me--a prayer to the God of my Life. Ps 42:8
For this God is our God forever and ever He will be our guide even to the end. Ps 48:14
Wednesday, February 18, 2015
Never Get Used To It
The medical professionals all say you will get used to your disease. No, that is not exactly true. You get used to the idea you can't be who you were, but the disease changes often enough that one never gets used to it.
I have spent the last several days asleep. No matter how hard I tried, I could not stay awake. I discussed this with my sister and my ra buddy Erin...my sister says it is like the non pain pain.
Non pain pain. Now that makes sense, doesn't it. Really. But being one with ra, it does. Pain that is there just enough to exhaust you but not register as pain. Pain enough to create anxiety, irritation or nausea, but not register as full pain. We say that is because it takes a lot of swelling etc., to actually hit the pain register in the brain...otherwise it just knocks one out into full sleep.
I could laugh slightly...I've had depression type sleeping. This is infinitely deeper sleep. I am a light sleeper...people walking in the next room wake me. This sleep, without even pain medication, is deep enough I do not wake when people walk by me. Then, suddenly, my pain increases and I wake up.
So no...I will never get used to my disease. Just to managing it as best I can.
I have spent the last several days asleep. No matter how hard I tried, I could not stay awake. I discussed this with my sister and my ra buddy Erin...my sister says it is like the non pain pain.
Non pain pain. Now that makes sense, doesn't it. Really. But being one with ra, it does. Pain that is there just enough to exhaust you but not register as pain. Pain enough to create anxiety, irritation or nausea, but not register as full pain. We say that is because it takes a lot of swelling etc., to actually hit the pain register in the brain...otherwise it just knocks one out into full sleep.
I could laugh slightly...I've had depression type sleeping. This is infinitely deeper sleep. I am a light sleeper...people walking in the next room wake me. This sleep, without even pain medication, is deep enough I do not wake when people walk by me. Then, suddenly, my pain increases and I wake up.
So no...I will never get used to my disease. Just to managing it as best I can.
it Is Impossible
Notes from A Lifetime of Wisdom by J.E. Tada:
When you think about it, if our adversary can get us to focus on our past mistakes, wrong turns and wasted opportunities, he has stolen the present moment from us...if our enemy can keep us occupied with our past with our past or with our future, we lose grace, blessings and opportunities in the Now.
---focusing on Pain or illness is a similar example of wasted time, although as equally hard to stop thinking about as brokenness. I can become so focused on my ra that everything washes away and it is all that exists. On the worst of the worst days it is perhaps more understandable, but I can still ask God for strength to fight the feelings of depression, irritation, pain and nausea. There is no need to go it alone.
The weaker we feel, the harder we lean. The harder we lean, the stronger we grow....the main aim of God in the work of grace is "an even deeper knowledge of God, and an even closer fellowship with Him. Grace is God drawing us sinners closer and closer to Him". This is the ultimate reason...God permits heartache and complexities of one sort and another into our lives to ensure that we learn to hold onto Him fast.
---I equate this to the relationship between myself and my dog. In a way, I continuously ask and even demand that my dog give up normal dog but behavior. I do not want my dog to dig holes. Not because I do not want to let my dog have doggie fun, but because his holes may cause my horse to break it's leg, causing great damage. Or a cow may fall and break it's leg. I thus stop my dog from digging holes. I expect my dog to want to be with only me. I allow my dog to be with other dogs, and take delight in his fun with other dogs. But if my dog begins to focus only on other dogs, and create a pack mentality of doggie destruction, I will remove the dog from the pack in protection...while to the dog I have devastated him, even if I spend ultimately more time with the dog. But I have prevented the dog from worse harm, although he cannot see it.
It is impossible (quadriplegic). You simply can't manage sweet patience and true joy while you're trying to find within yourself the stamina of courage to do so. You will fail every time. The courage, patience and the will to get up and face each day come from another source.Leaning...you will also begin to see how Grace relates to that increasingly rare and elusive state of being we call contentment.
---I am just entering a time of increased.pain and sickness after four or five glorious days of being nearly pain free. I walked to the barn for the first time to see goat kids and the calf. I have not been to the barn in likely four months. The last time I went out that much I sobbed hysterically, because it was if I stepped out of coma...the season was fall, so much had changed...there were no flowers...it was a season of death, and I wished I was part of that season. I was still so mourning the great loses I had accepted...not just my ra, but many things I had avoided, like deaths in the family and other stresses. I simply couldn't take this.
I still can't. It, as Joni says, is impossible. There is no earthly way anyone could take the constant tide of better-ish to horribly ill. There is no way. Once I began to cling desperately to God, crying to Him and clinging to Him at all hours, it became, becomes, easier...there are still days I scream silently to myself that this is impossible, and much like Joni did in her books, beg Him and why I have to face this too. Especially when I have faced many great battles...
So perhaps He is keeping me safe from the dog pack mentality. I do not know. I know it breaks my heart and nearly makes me throw up considering 60 years of this suffering...with possible little to no relief. I have read and watched the stories of my fellow sufferers the immune system is indeed impressive...I wonder we get colds etc at all.!!
By day the Lord directs His love, at night His song is with me--a prayer to the God of my life. Ps 42:8
For this God is our God for ever and ever; He will be our guide even to the end. Ps 48:14
When you think about it, if our adversary can get us to focus on our past mistakes, wrong turns and wasted opportunities, he has stolen the present moment from us...if our enemy can keep us occupied with our past with our past or with our future, we lose grace, blessings and opportunities in the Now.
---focusing on Pain or illness is a similar example of wasted time, although as equally hard to stop thinking about as brokenness. I can become so focused on my ra that everything washes away and it is all that exists. On the worst of the worst days it is perhaps more understandable, but I can still ask God for strength to fight the feelings of depression, irritation, pain and nausea. There is no need to go it alone.
The weaker we feel, the harder we lean. The harder we lean, the stronger we grow....the main aim of God in the work of grace is "an even deeper knowledge of God, and an even closer fellowship with Him. Grace is God drawing us sinners closer and closer to Him". This is the ultimate reason...God permits heartache and complexities of one sort and another into our lives to ensure that we learn to hold onto Him fast.
---I equate this to the relationship between myself and my dog. In a way, I continuously ask and even demand that my dog give up normal dog but behavior. I do not want my dog to dig holes. Not because I do not want to let my dog have doggie fun, but because his holes may cause my horse to break it's leg, causing great damage. Or a cow may fall and break it's leg. I thus stop my dog from digging holes. I expect my dog to want to be with only me. I allow my dog to be with other dogs, and take delight in his fun with other dogs. But if my dog begins to focus only on other dogs, and create a pack mentality of doggie destruction, I will remove the dog from the pack in protection...while to the dog I have devastated him, even if I spend ultimately more time with the dog. But I have prevented the dog from worse harm, although he cannot see it.
It is impossible (quadriplegic). You simply can't manage sweet patience and true joy while you're trying to find within yourself the stamina of courage to do so. You will fail every time. The courage, patience and the will to get up and face each day come from another source.Leaning...you will also begin to see how Grace relates to that increasingly rare and elusive state of being we call contentment.
---I am just entering a time of increased.pain and sickness after four or five glorious days of being nearly pain free. I walked to the barn for the first time to see goat kids and the calf. I have not been to the barn in likely four months. The last time I went out that much I sobbed hysterically, because it was if I stepped out of coma...the season was fall, so much had changed...there were no flowers...it was a season of death, and I wished I was part of that season. I was still so mourning the great loses I had accepted...not just my ra, but many things I had avoided, like deaths in the family and other stresses. I simply couldn't take this.
I still can't. It, as Joni says, is impossible. There is no earthly way anyone could take the constant tide of better-ish to horribly ill. There is no way. Once I began to cling desperately to God, crying to Him and clinging to Him at all hours, it became, becomes, easier...there are still days I scream silently to myself that this is impossible, and much like Joni did in her books, beg Him and why I have to face this too. Especially when I have faced many great battles...
So perhaps He is keeping me safe from the dog pack mentality. I do not know. I know it breaks my heart and nearly makes me throw up considering 60 years of this suffering...with possible little to no relief. I have read and watched the stories of my fellow sufferers the immune system is indeed impressive...I wonder we get colds etc at all.!!
By day the Lord directs His love, at night His song is with me--a prayer to the God of my life. Ps 42:8
For this God is our God for ever and ever; He will be our guide even to the end. Ps 48:14
Monday, February 16, 2015
Success and Heartbreak
Success! My body must be in a semi natural remission the last several days. Still a lot of swelling and swollen bursae, but milder pain until later in the evening. It is so pleasant to have more energy and be able to think more clearly.
I have done a little research; RA patients need higher protein and higher Vitamin C diets. So I am working on those two things. Maybe the higher vitamin C has made a change for me. Whatever the cause, I am extremely grateful for the break in misery.
Today I walked (slowly, and with a faint limp) to the garden, looking at all the new, soft, spring plant-life. Little daffodils, snowdrops are blooming happily and brightly. Perennial plants are slowly poking up out of the ground.
As much as that brings happiness, it brings a mild sadness to my heart. Better than the last time I had a slight remission. The last time I was able to go outside with any length of time...and saw the changes in season, I went in the house and sobbed. It is hard to go months not seeing or caring about those things, and then poof! see a totally different season. I imagine that is how coma patients feel. It is such a shock to see big changes in season. For instance....I've gone from late summer to spring without really seeing any other season.
I am really glad I saw the flowers, the goat kids and the calf. It lifted my whole spirit. I will leave for now--return and write my thoughts on my Bible study later.
I have done a little research; RA patients need higher protein and higher Vitamin C diets. So I am working on those two things. Maybe the higher vitamin C has made a change for me. Whatever the cause, I am extremely grateful for the break in misery.
Today I walked (slowly, and with a faint limp) to the garden, looking at all the new, soft, spring plant-life. Little daffodils, snowdrops are blooming happily and brightly. Perennial plants are slowly poking up out of the ground.
As much as that brings happiness, it brings a mild sadness to my heart. Better than the last time I had a slight remission. The last time I was able to go outside with any length of time...and saw the changes in season, I went in the house and sobbed. It is hard to go months not seeing or caring about those things, and then poof! see a totally different season. I imagine that is how coma patients feel. It is such a shock to see big changes in season. For instance....I've gone from late summer to spring without really seeing any other season.
I am really glad I saw the flowers, the goat kids and the calf. It lifted my whole spirit. I will leave for now--return and write my thoughts on my Bible study later.
Friday, February 13, 2015
Thankful
I am so thankful...I have been able to be up, eat, clean house a little bit, visit people the last couple of days. Thank the Lord for giving me strength to be able to be up. A true blessing.
We need to be thankful. Even for hard things...I am working on that still.
We need to be thankful. Even for hard things...I am working on that still.
Moments of Time
I managed to go to a friend's house last night. It was a short drive, and I pretty much laid down the whole time I was there. But I went for the first time since the last time I went.
"I've clung to [God] in countless storms, like a strong rope when I feel myself slipping." J. E. Tada.
How comforting it is to know God is there and sturdy to take my constant pulling and nagging for help. He is there 24/7, never sick, never tired, and always willing to listen to me.
"In those mad, midnight moments when hope recedes, worries mount, sleep refuses to come, I have t remind myself God is not sleeping either. He sits up with me ALL night. He hears me when no one else hears me, bending down to listen to my whisper. He knows every tear that falls."
As discussed in an earlier post, things are so much worse at night. I often face my worst crisis in the middle of the night, when the house is silent with sleeping people. I smother my tears of frustration and pain to hide them...I don't want to wake anyone because there is nothing anyone can do for me, and I don't want to hash over the same thing again. And again. It's always the same...the fear of being invalided the rest of my life.
So I turn to the One who is always awake.
Peace is often given to me with some simple prayers. J.E. Tada says she often lost her temper with God, practically yelling at Him, much like Jonah did. Somehow I can't do that...and I am not even mad at God. I do not understand why He has allowed this, but if He will give me His strength to take it, I will be able to take my RA.
"Allowance of pressure and suffering to the point of suffocation is to complete one thing--reliance on God."
I am having to rely on God with my life more than I have in some time...and having God near me is quite the reward for suffering. I still wish that I would simply heal up and be able to run in the field again with my dog.
How abundant are the good things
that you have stored up for those who fear you,
that you bestow in the sight of all,
on those who take refuge in you.
Psalm 31:19
"I've clung to [God] in countless storms, like a strong rope when I feel myself slipping." J. E. Tada.
How comforting it is to know God is there and sturdy to take my constant pulling and nagging for help. He is there 24/7, never sick, never tired, and always willing to listen to me.
"In those mad, midnight moments when hope recedes, worries mount, sleep refuses to come, I have t remind myself God is not sleeping either. He sits up with me ALL night. He hears me when no one else hears me, bending down to listen to my whisper. He knows every tear that falls."
As discussed in an earlier post, things are so much worse at night. I often face my worst crisis in the middle of the night, when the house is silent with sleeping people. I smother my tears of frustration and pain to hide them...I don't want to wake anyone because there is nothing anyone can do for me, and I don't want to hash over the same thing again. And again. It's always the same...the fear of being invalided the rest of my life.
So I turn to the One who is always awake.
Peace is often given to me with some simple prayers. J.E. Tada says she often lost her temper with God, practically yelling at Him, much like Jonah did. Somehow I can't do that...and I am not even mad at God. I do not understand why He has allowed this, but if He will give me His strength to take it, I will be able to take my RA.
"Allowance of pressure and suffering to the point of suffocation is to complete one thing--reliance on God."
I am having to rely on God with my life more than I have in some time...and having God near me is quite the reward for suffering. I still wish that I would simply heal up and be able to run in the field again with my dog.
How abundant are the good things
that you have stored up for those who fear you,
that you bestow in the sight of all,
on those who take refuge in you.
Psalm 31:19
Entrapment
More thoughts fro Joni Eareckson Tada's A Lifetime of Wisdom.
I do not know that I agree that God confines us, as in the following, but I know He may allow it.
The love of God is supreme and matchless and He only confines me for a wise and timely purpose. For those who believe in the love and the wisdom of a sovereign God, even a heart breaking confinement can be a place of building trust.
I still trust my God. No matter how sick I may be, or how sad and hopeless I may feel momentarily. I know that my God is always there, and that He always loves me.
He allowed this thing to happen to me, as with all those hard things that have happened. I cannot say why, although I know that I have had time to reach deeper into the Word, spend more time "being still and knowing" and reading the experiences of others. Something I have always wanted.
We may not be accountable for some trials, but we ARE accountable for our responses.
This one can be tricky. How I work at, with God's help, keeping patient and hopefully somewhat kind to my care assistants. I try to keep my mind in a good location, focusing on what I can do while stuck in one place. I can often focus on the Word. I can ALWAYS pray, and I can know God. That really is the single most important thing in existence--God. It really should not matter how sick I am, but what I can do to serve God.
It is hard to focus completely on God. When we are sick, we feel "too ill" to think of God, we can only think of our own comfort. When we are well, we are "too busy" to think of God. I guess we have to learn to do everything for the glory of God so that everything is of God. Otherwise, as a well person we are like Mary and Martha--too focused on doing something rather than spending time with God. If we focus on doing the things we must FOR God, then we are able to know Him. Even bed rest.
Praise be to the Lord, for He has heard my cry for mercy. The Lord is my strength and my shield; my heart trusts in Him and I am helped. My heart leaps for joy and I will give thanks to Him in song. Ps 28:6-7.
The Lord gives strength to His people; the Lord blessed His people with peace. Ps 29:11
I do not know that I agree that God confines us, as in the following, but I know He may allow it.
The love of God is supreme and matchless and He only confines me for a wise and timely purpose. For those who believe in the love and the wisdom of a sovereign God, even a heart breaking confinement can be a place of building trust.
I still trust my God. No matter how sick I may be, or how sad and hopeless I may feel momentarily. I know that my God is always there, and that He always loves me.
He allowed this thing to happen to me, as with all those hard things that have happened. I cannot say why, although I know that I have had time to reach deeper into the Word, spend more time "being still and knowing" and reading the experiences of others. Something I have always wanted.
We may not be accountable for some trials, but we ARE accountable for our responses.
This one can be tricky. How I work at, with God's help, keeping patient and hopefully somewhat kind to my care assistants. I try to keep my mind in a good location, focusing on what I can do while stuck in one place. I can often focus on the Word. I can ALWAYS pray, and I can know God. That really is the single most important thing in existence--God. It really should not matter how sick I am, but what I can do to serve God.
It is hard to focus completely on God. When we are sick, we feel "too ill" to think of God, we can only think of our own comfort. When we are well, we are "too busy" to think of God. I guess we have to learn to do everything for the glory of God so that everything is of God. Otherwise, as a well person we are like Mary and Martha--too focused on doing something rather than spending time with God. If we focus on doing the things we must FOR God, then we are able to know Him. Even bed rest.
Praise be to the Lord, for He has heard my cry for mercy. The Lord is my strength and my shield; my heart trusts in Him and I am helped. My heart leaps for joy and I will give thanks to Him in song. Ps 28:6-7.
The Lord gives strength to His people; the Lord blessed His people with peace. Ps 29:11
Thursday, February 12, 2015
Thoughts
From my readings of "A Lifetime of Wisdom" by Joni Eareckson Tada.
"It's worse at night. It always is."
why is everything worse at night? Pain is worse, colds are worse, fear is worse. Even if every light in the house is on, as if you were fooling yourself into thinking it was daytime. But yes, everything is always worse at night.
Yet God is there through the watches of the night--as it says throughout the Psalms. Jesus prayed through the night as well. Obviously God is always there. So we should not be afraid. Maybe it is that fear that makes us feel worse.
Struggles are many in this life. I have had many difficult things. I am sure anyone reading this has as well. Times of being alone, or sick, or afraid. Times of great sadness, confusion...so many emotions. "God has placed me, not misplaced me--He knows where I am and how to care for me".
This is a hard thing to take, although very comforting at the same. That God knows where I am and how to care for me. The hard part is that I am allowed to be here, dealing with this chronic disease. However, God is good.
There was a time in my life in which I had no one. Whether I caused that, or it just happened, I do not know. It does not matter...it lead me to be the person I am now, and after all these years, I am grateful for the difficulties I had.
Now, in this difficulty, God knew what I needed while I wait (impatiently sometimes) to see how stable I get....He has given me a chance to have many dear friends, closer to sisters, who are often contacting me. God does indeed give us an "escape" from our troubles. I used to think that meant there was a way of avoiding suffering. In some instances, perhaps...but I think there are also ways in which we are able to escape the pain of whatever struggle we face.
I have been given a dear sister who has been sick alone for decades with RA. She is my likely strongest supporter, giving me the best tips on the disease. My parents, my oldest sister.. I have my "sister" friends who I adore, and my "parents".
We may feel fenced in by diseases or struggles...but we are not trapped. Fences may seem like they have no opening...but as Joni says, one can always look up. And we get the best hope from above.
"It's worse at night. It always is."
why is everything worse at night? Pain is worse, colds are worse, fear is worse. Even if every light in the house is on, as if you were fooling yourself into thinking it was daytime. But yes, everything is always worse at night.
Yet God is there through the watches of the night--as it says throughout the Psalms. Jesus prayed through the night as well. Obviously God is always there. So we should not be afraid. Maybe it is that fear that makes us feel worse.
Struggles are many in this life. I have had many difficult things. I am sure anyone reading this has as well. Times of being alone, or sick, or afraid. Times of great sadness, confusion...so many emotions. "God has placed me, not misplaced me--He knows where I am and how to care for me".
This is a hard thing to take, although very comforting at the same. That God knows where I am and how to care for me. The hard part is that I am allowed to be here, dealing with this chronic disease. However, God is good.
There was a time in my life in which I had no one. Whether I caused that, or it just happened, I do not know. It does not matter...it lead me to be the person I am now, and after all these years, I am grateful for the difficulties I had.
Now, in this difficulty, God knew what I needed while I wait (impatiently sometimes) to see how stable I get....He has given me a chance to have many dear friends, closer to sisters, who are often contacting me. God does indeed give us an "escape" from our troubles. I used to think that meant there was a way of avoiding suffering. In some instances, perhaps...but I think there are also ways in which we are able to escape the pain of whatever struggle we face.
I have been given a dear sister who has been sick alone for decades with RA. She is my likely strongest supporter, giving me the best tips on the disease. My parents, my oldest sister.. I have my "sister" friends who I adore, and my "parents".
We may feel fenced in by diseases or struggles...but we are not trapped. Fences may seem like they have no opening...but as Joni says, one can always look up. And we get the best hope from above.
Tuesday, February 10, 2015
changes
What a change of attitude this disease will throw at you. It really tosses some depths of despair at one, even if you try hard to be positive. Honestly, the oyster way to have a good attitude is to ask God. Not only for a better attitude, but to ask Him to just love through you. I really do not have the strength to take on this chronic disease myself, even with the great support team I have been blessed with.
If prayers are answered immediately, be thankful...you may have to be patient and wait for an answer to prayers...paraphrase of j. E. Tada.
I have been so blessed that when I ask God for help to HANDLE my sickness, I get an instant answer...maybe a day or so, but I do get an answer. Or thus far. My healing process has still been a no.
But if a day is a thousand years, think of what I can do in a day. Paraphrase again.
If I prayed more, one could consider the time to be a thousand years of prayer because of being with Someone outside of time. Maybe my difference making could be by prayer. I do not pray as deeply as I possibly could. What conversations I have missed out on.
My problem is, too, that I prefer to write prayers out...and my hands do not cooperate. Maybe that difficulty, though, would make me be still. Still and know God was and is there.
If prayers are answered immediately, be thankful...you may have to be patient and wait for an answer to prayers...paraphrase of j. E. Tada.
I have been so blessed that when I ask God for help to HANDLE my sickness, I get an instant answer...maybe a day or so, but I do get an answer. Or thus far. My healing process has still been a no.
But if a day is a thousand years, think of what I can do in a day. Paraphrase again.
If I prayed more, one could consider the time to be a thousand years of prayer because of being with Someone outside of time. Maybe my difference making could be by prayer. I do not pray as deeply as I possibly could. What conversations I have missed out on.
My problem is, too, that I prefer to write prayers out...and my hands do not cooperate. Maybe that difficulty, though, would make me be still. Still and know God was and is there.
Enbrel
The rheumatologist surprised me--we are skipping methotrexate and going straight for Enbrel, which is a biologic medication...sort of gives the body something else to "kill" other than itself.
I am excited but terrified too. I have had so many other medicines that just did not help...but at least we are now with the bigger guns, so I pray we lessen some of my discomfort.
Have not been able to type for days, and I am away from my quote book--but I have been trying to read some books, and have several thoughts. Will post those later tonight if able.
Here we go!
I am excited but terrified too. I have had so many other medicines that just did not help...but at least we are now with the bigger guns, so I pray we lessen some of my discomfort.
Have not been able to type for days, and I am away from my quote book--but I have been trying to read some books, and have several thoughts. Will post those later tonight if able.
Here we go!
Friday, February 6, 2015
Short Message
Bad hand swelling, so just a word:
I am living every day until I can be alive again.
Whether by the remission of my illness or to be with my King. My new goal words are that. Living every day until I can be alive again.
I am living every day until I can be alive again.
Whether by the remission of my illness or to be with my King. My new goal words are that. Living every day until I can be alive again.
Ponder
I have lost a few friends over my illness. Having been on the side of an "unbeliever" of the intensity of RA pain (or whatever I have)---I can understand partially. I have had some quite unkind things said to me.
I was reading this evening (oh to read again!) about the crucifixion and how, to paraphrase,[A Step Further, Joni E Tada] it really was if Jesus was being demanded of why He did sins. MY sins. "Why did you think poorly of that person? Why did you lie?" etc etc...It really horrifies one to consider that everything I have done and will do that is a sin was asked of Jesus. Times millions of people.
What absolute torture...I wonder if, although He did not do those sins, He had to feel the guilt of them. Guilt is so smothering, it must have been terrible if He was saddled with that as well. Wow.
Then, I remembered that God abandoned Jesus on the Cross, and that that was the absolute epitome of suffering. I imagine no one would understand losing that connection but Adam and Eve, who were with God daily, but where Jesus had never been without Him from my understanding......and what is Hell but the complete lack of God? So Jesus pretty much literally went through Hell on the Cross. He was accused of all the sins of the entire world past, present and future....and the ABANDONED by His Father, something none of us ever have to face.
I am so grateful that my Father will never abandon or forsake me. He is always there with me as I struggle hourly with pain, anger, depression, acceptance and the whole long spectrum of grieving. Anyone else may leave me at any time, but He is always there for me, loving me and weeping with me, even though it may not be in His plan to heal me this second. It may not even be until I leave this world for my new home...but I think He weeps for me too. He wept for Lazarus, even though He raised Him from the dead. I have died in a sort of way. I will never be who I was. I may also never get much better....some RA is very resistant to therapy. So I think when I cry over my "death", He cries with me, holding my close to His heart.
I was reading this evening (oh to read again!) about the crucifixion and how, to paraphrase,[A Step Further, Joni E Tada] it really was if Jesus was being demanded of why He did sins. MY sins. "Why did you think poorly of that person? Why did you lie?" etc etc...It really horrifies one to consider that everything I have done and will do that is a sin was asked of Jesus. Times millions of people.
What absolute torture...I wonder if, although He did not do those sins, He had to feel the guilt of them. Guilt is so smothering, it must have been terrible if He was saddled with that as well. Wow.
Then, I remembered that God abandoned Jesus on the Cross, and that that was the absolute epitome of suffering. I imagine no one would understand losing that connection but Adam and Eve, who were with God daily, but where Jesus had never been without Him from my understanding......and what is Hell but the complete lack of God? So Jesus pretty much literally went through Hell on the Cross. He was accused of all the sins of the entire world past, present and future....and the ABANDONED by His Father, something none of us ever have to face.
I am so grateful that my Father will never abandon or forsake me. He is always there with me as I struggle hourly with pain, anger, depression, acceptance and the whole long spectrum of grieving. Anyone else may leave me at any time, but He is always there for me, loving me and weeping with me, even though it may not be in His plan to heal me this second. It may not even be until I leave this world for my new home...but I think He weeps for me too. He wept for Lazarus, even though He raised Him from the dead. I have died in a sort of way. I will never be who I was. I may also never get much better....some RA is very resistant to therapy. So I think when I cry over my "death", He cries with me, holding my close to His heart.
Wednesday, February 4, 2015
Patience
Still cannot read, can't hold books more than a few minutes. Typing is slow but easier to do...I can get propped just "so" and be ok-ish.
Frustration and depression have been washing over me the last week. I feel more at square one than I have with the amount of pain and swelling that I have had lately. It's visible enough for others in the house to comment on my hands...which also makes sense why I am typing with about three-five fingers with both hands.
keeping the faith in suffering. Always.
Frustration and depression have been washing over me the last week. I feel more at square one than I have with the amount of pain and swelling that I have had lately. It's visible enough for others in the house to comment on my hands...which also makes sense why I am typing with about three-five fingers with both hands.
keeping the faith in suffering. Always.
Reflections in the Mirror
I have been too sick to write anything.
I tried tumeric, which is supposed to be a wonderful antiinflammatory. It also kills everything in your gut and makes you sicker than a dead dog forever. And then gives you another flare because you needed one. Riiiight.
I was mulling over my past, as I haven't been able to read either to speak of. I was thinking of saying for years "I don't feel good," and "I'm tired."
Then I thought that those symptoms came from the ever increasing anxiety that I had was the cause.
Yeah, I don't really think so anymore. It was pain.
My sister and I have what we describe as "non pain pain". Which is pain that you don't register yet, but it is making you irritable, exhausted, anxious etc. May not make much sense, but sort of like how babies or small children hurt but don't tell you until it is really bad, such as with a cold. They just get moody and fussy.
My theory is that, as joints themselves do not have nerve endings in them, it takes an awful lot of swelling and misalignment to cause pain. And it does.
So the non pain pain has been acting up in my life for ages. It explains an awful lot. Also makes things really depressing, knowing I have had it so long, and will continue to have it.
I did manage to read something by Joni Eareckson talking about our unseen battles. She referred to a roommate who was blind with an unknown neuromuscular disease, yet she never complained or said anything negative. (I wish I could say the same for myself...I have been quite negative)...and while this woman was often alone the last years of her life, she was not alone...because those in the spiritual world were surrounding her and by her choices, celebrating. Her attitude and faith in God meant that there was great celebration on the part of God's side.
I burst into hysterical tears at this. Not even about the celebration for the choices--which it is true we can control our minds regardless of our health---but the idea of never ever being alone, having even more beings around me. God is always with me, but the idea of even more company was just too much somehow. I so often feel too terrible for company, yet being alone is among the worst.
I tried tumeric, which is supposed to be a wonderful antiinflammatory. It also kills everything in your gut and makes you sicker than a dead dog forever. And then gives you another flare because you needed one. Riiiight.
I was mulling over my past, as I haven't been able to read either to speak of. I was thinking of saying for years "I don't feel good," and "I'm tired."
Then I thought that those symptoms came from the ever increasing anxiety that I had was the cause.
Yeah, I don't really think so anymore. It was pain.
My sister and I have what we describe as "non pain pain". Which is pain that you don't register yet, but it is making you irritable, exhausted, anxious etc. May not make much sense, but sort of like how babies or small children hurt but don't tell you until it is really bad, such as with a cold. They just get moody and fussy.
My theory is that, as joints themselves do not have nerve endings in them, it takes an awful lot of swelling and misalignment to cause pain. And it does.
So the non pain pain has been acting up in my life for ages. It explains an awful lot. Also makes things really depressing, knowing I have had it so long, and will continue to have it.
I did manage to read something by Joni Eareckson talking about our unseen battles. She referred to a roommate who was blind with an unknown neuromuscular disease, yet she never complained or said anything negative. (I wish I could say the same for myself...I have been quite negative)...and while this woman was often alone the last years of her life, she was not alone...because those in the spiritual world were surrounding her and by her choices, celebrating. Her attitude and faith in God meant that there was great celebration on the part of God's side.
I burst into hysterical tears at this. Not even about the celebration for the choices--which it is true we can control our minds regardless of our health---but the idea of never ever being alone, having even more beings around me. God is always with me, but the idea of even more company was just too much somehow. I so often feel too terrible for company, yet being alone is among the worst.
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RA Awareness Day
