Gail,
Hey kiddo. Our hearts literally bleed for you. We know the hearache and pain. If you want to know how you feel please go to my diary section and sit down for a good read and a healing cry.
Yes we are with you as kindred spirits. There is no kind of pain that can describe the pain that we suffer. From the very beginning we were told it was psychosomatic and now we don't trust doctors. Some of the doctors that treat us think we are drug addicts....yeah we are in need of pain medicine, but that doesn't make us a drug addict.
Being a testosterone filled person (suppose to be funny) our egos are always wanting to 'fix things' including people. Well my darling there is no fix it here. Nothing is going to heal you. There is no magic formula. It's like we have to sit in it and that's about it.
I have portrayed myself as Prometheus, the man who in Greek Mythology stole fire from the gods and gave it to man. Prometheus' punishment was to be chained to a cliff where an eagle would come down every afternoon and devour his liver. Through the night his liver would grow back and he would have to endure this pain forever. This seems to be our road of life.
I would suggest a couple of things that you do before you move further from the direction that you want to go.
1) Get to free financial counseling. Don't go to a credit place that just wants to bankrupt you and charge you to do this. Go to a place that can help you settle your debts without bankruptcy.
2) Get to work on your disability. Make sure you speak with your doctor and get his/her opinion of what you should do. There comes a time when you have to say, I can't do this anymore. I can't function. Depression that is caused by continued pain is only going to increase your pain. It is very difficult decision, but once you get the 'ball rolling' for disability, the better off you will feel.
For me, I was fortunate. I got with my disability insurance adjuster and they hooked me up with Allsup and I was given disability three months after I resigned from my job. This is very unique for most people don't have disability insurance. But you get to a company that will take your case. It will be worth it if you have to pay some money for their services.
3) Don't give up. I tried suicide and I almost succeeded. You stand a chance to hurt everyone that you love or who loves you. You are a person of value. Ride this out. If you are a person of faith, then surround yourself with people from that community of faith.
4) Don't put pressure on yourself. For me, I have to keep reminding myself that I am disabled. That I don't have to do that which I did four years ago. If you do put pressure on yourself, you will increase your pain.
These are my experiences. I do hope that you take this advice coming from someone who has been there, done that, and still doing it.
/hugs to Gail
If you want to send me a PM, I would be glad to steer you to some suggestions on who to contact for disability representation.
Dark Pain
I decided to go ahead and include my article from my diary. I hope this might help. It's there if you want to read it.
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Dark Pain (defined) Pain that arises in the dead of night when no one is around. It is there when you wake up and waiting for you when you lie down to sleep. Here you are....I truly hope this helps:
I am not certain if I can write a short synopsis of my DarkPain. Right now I have the toughest pain in my feet in the last ten days. The bottom of my left foot (LF & RF) is swollen when I woke up this morning. As I do daily I keep an upward prayer to my Christ. I ask him with tears in my heart that if He would take away my pain. I generally end it with “Thy will be done.” You see several years ago as a teenager, I ask God to test me and to try my love for Him. Ever since a teenager I was lost in my love for God. My faith test was to my Master and Savior, Jesus Christ. You see I love Him more than ever. I don’t think it is because of my pain, but just the process of my continual love. When I married my darling bride of 23 years plus I thought I loved her that day when I committed my life to her and her alone. Now after 23 years, I can honestly smile at that day when I said I love her. I see now that love comes in depth, width, and height.
My life has been filled with the human vessel being somewhat weak in this world. I have had foot surgery when I was a senior in high school. I played a linebacker four years of high school. I also was varsity in basketball and was suppose to have been scouted by the New York Yankees double AA farm club as a pitcher with a 93 mph fastball and a ball that would emulate a ball dropping off a table. Some of you know what I just said as this is a baseball term.
In my 30’s I had a neck surgery from playing too much football with my head (duh). I recovered well from that surgery. I then continued through my 53 years of living with tummy surgery, groin surgery (as a result of trying to hurdle a tackler in High School), two knee surgeries, and finally a RF surgery. Unknown to me, I kept going back to the doctor with RF pain that was unbearable. I was on oxycotin by then for 3 months. I was turned over to a neurologist who could not find an answer to my pain. By know with my training I knew I was going to go to a psychiatrist (duh). Finally I got weary of his psycho babble and his beating around the bush wanting me to “discover my real pain” that was being willed by my psychotic inability to cope with life’s challenges. “Give me a break, will ya!” /sigh and they gave him a degree in stupidity. By now you can probably tell that I am not impressed with that medium of treatment.
So I finally went to see my regular doctor. Since I have a lovely wife and two little girls it seemed appropriate to me that we have a woman doctor. /sigh You see I am a man’s man. I (errr, use to) hunt, fish, paintball, noon basketball with us ‘use to be’s”, skydiving, and other physically demanding sporting type genre. I am a likeable person who is re-energized by being in the presence of crowds of people. I am a “people pleaser” who easily leads in the fun making. I have a blast with people, that is now gone. Anyways this lady doctor was wonderful. She allowed me to pray when we left her treatment rooms. She gave me respect and respected my body, I was amazed how she gave me physicals without her need to visually examine the ‘cough for me, please’.
After 10 months of trying to treat my symptoms she was able to come to a conclusion. It was a regular visit. I was typically depressed, in excoriating pain, unable to communicate my situation (by now I was sick and tired of telling anyone ‘how I felt’), and begging her to seriously consider amputating both my legs from just below the knee. “Dude” I was serious about the final discourse of my medical opinion, CUT THEM SUCKERS OFF!
During the course of her treatment for my symptoms, I woke up on a Sunday work day with pain in my knee down to my foot. I could not walk. So I went to the ER after calling in being unable to fill the pulpit that day. I got to the ER and they said I had what was called behind my knee as a “Baker’s Cyst”. I thought that was kool cause my last name is Baker. When they had taken this temperature on my check out it had gone from
my natural core warmth of 97.3 to 104.5. I started to get groggy, my face felt hot, and I started to have a lapse of time. Like I was in the ER hearing the words such as “stat”, get the doctor in here now, and stuff like that. I finally open my eyes to being told I was in the intensive care unit. I always thought man being in intensive care must be very interesting. You got people waiting on you hand and foot (pun intended), they continually check IV’s, temp, and ‘is there anything I can get you?” type stuff. Well after being in there I will say this, “it was terrible.” I didn’t care if I lived or died. I was in total pain of my feet and when they asked me if I wanted anything I would say ‘to die’. Then they called my church family to come see me and appointed a “head hunter” in to talk to me. “Way to say how you feel, Charles!” Is what I thought. You know you can say you feel like you want to die without having the whole hospital jumping to deal with you, not because they care, but because they don’t want to get sued! Bah! I thought, you dummy don’t tell them how you feel. I knew better than that, but was caught at a weak moment.
See here is the thing for me as I once again regress. Oh and by the way, you have my permission to stop reading this whiney, self-gratifying, out of tune with reality rant. Ok, back to my story. I have enjoyed my calling from God to be a pastor. It has been the most rewarding part of life just below my love for God, my lovely bride and our two little princesses. Educationally speaking I felt that I had prepared myself to deal with mostly the spiritual lives of a hurting peoples. I felt secure that I could help people deal with the challenges of our day. I had a baccelor’s degree in Bible and a minor in psychology (counseling studies). I was able, by the grace of God to achieve a Master of Divinity from a very reputable seminary. These two achievements were skills that I felt would help me to love people and my God even more.
I was very successful in ministry. I was able to change lives through people receiving Christ as their Savior, to lighting fires under the hearts of the depressed to look upward to God, and increased the overall ministry of the church. In 22 years of pasturing, I ministered to four churches. It was while ministering to one of my churches I was awarded a Doctorate of Theology from a well known Christian University. I did not understand why I was to be given this last educational achievement of which only 4% of all pastors ever receive. I was finally told by the president of the university that my present church was being evaluated and had reviewed my ministerial leadership in a way that revived that congregation of 350 people. WOW!! I felt it was an award from God for my faithfulness to Him. Then I was reminded that we will get our award at in our presence of God. These awards are called crowns of which in the end we will cast them at the feet of Jesus.
So I was set. By now I was at the height of my ministry. It was great because I know for a fact that a minister’s effectiveness is at its highest peak in their 50’s and 60’s. It is there that our years of walking with God get better and our ministry with people is at its best. WHOOT!! I thought.
So God called me to my last church. It was a smaller congregation and one with a history of pastors being there for 20 plus years. WOW again!! I am just a few months close to my 50th birthday and going to a church that will finish out my pastoral ministry. Then the DarkPain arrived. I am now 52 years old. My DarkPain is hidden through by my inability to minister to people. I don’t want to hear anyone say, “Now it is time for us to minister to you.” I got so tired of hearing that that I was ready to puke. Come on, I thought to these people. It came a day of DarkPain that I had thrown in the towel. I had given up and I had become wanting of my faith because of my terrible DarkPain. I took my morphine (100 mg) and swallowed 10 of them and went to bed. The next morning I woke up angry. I mean VERY ANGRY. Why didn’t I die. How come I have to once again face this DarkPain. Why do I have see my family suffering through my DarkPain. I did the wrong thing. I told my doctor what I did. It was the wrong thing to do. My doctor had me go to a pain clinic and listen to their speal. I went back to my doctor and told her that I had given up and what I did was a faithless act. I told her that I would never do that again, and she had Betsy put my meds in a lock box and now she gives out my medicine. It works now. There were a few times that she would leave the box open and I would grab a few extras to take in the night time. But I figured finally that that was dumb. You end up on the last few days short on the monthly prescription. Then I would really be up a creek for two days. I stopped that really quick. Poor method.
They do not understand the meaning of pastoral ministry. I was comfortable living in a glass house. People knew everything about me and I was secure that they would find no ill will toward the cause of Christ. “I don’t drink, smoke, cuss or chew, or run around with girls that do.”
The study and discovery of the Bible. Being trained in Greek and Hebrew I explored the scriptures daily. I was excited to be able to present my understanding and discovery of what the Bible said to me. People told me that I had a personable presence in the pulpit. People would tell me that they thought I was talking straight to them. I would respond that “no, you were in tune with the Holy Spirit who had revealed something that challenged you in your life with God and His people.” What an exciting life.
I enjoyed the hours of visiting in people’s homes, visiting the nursing homes, marrying, dedicating babies to God, helping people in crisis, giving out the awesome hope in Christ to those who are anxious for a connection to God. All this is now a thing of the past. It took me a few months before I could attend a worship service in my church that I use to pastor. It would tear me up that I had to sit and listen to sermons I had preached. /sigh So I left that church and I am presently attending another church with my family that ministers to them and my wife loves being there as she is teaching the third and fourth graders. God is there in my heart but I struggle with not being able to participate fully in the worship experience. I can’t stand and sing. I can’t go around and shake hands. I am tied to these pitiful feet that drag along is lamb’s hide and about two sizes larger than I was before the onset of the DarkPain.
As far as my family goes, my two little ones are so carrying. At night for our prayer time, they always ask God to heal me. They put their arms around me daily and ask how I am doing. They give me healing hugs and precious kisses that are part of my daily dose of medicine. My wife and I are even closer. (So help me if someone says, “Maybe this is the reason why you have this” I will never post here again) I am serious. My pain and my disease is from the DarkOne. God is a God of Grace, the Jehova Jirra, the Beginning and the End, the Bread of Life, the Everlasting Father, the Prince of Peace, the Savior of the World. God does not cause bad things to enter into our lives. Most the time we bring it on ourselves but nevertheless, “S %$t happens”. (I am pretty wound up right now but I usually don’t say vulgar words but sometimes they describe feelings.
My loving wife is my soul mate. She is so helpful to me. We have ministered together for two decades. Now she helps me get up in the morning. Sometimes when I am walking around the house I am thrown down on the floor. The DarkPain has arrived once again. My ankle feels like it has been broken. I can even locate where it is broken but if you ‘touch it’ I will hit you. No kidding around.
Anyways I have been hampered by the pain and medication of performing my husbandly responsibilities to fulfill my wife. Sometimes we just lay with each other and talk about stuff. Once again, don’t tell me that this has brought us closer to God. Because she desires those needs and I am unable to fulfill her. She puts lotion on my feet, and today she graciously and unwillingly removed an infected toe nail that was ingrown. Boy did it hurt and she hates dealing with feet.
By now if you have nodded off, I understand. Most of you have understood my DarkPain. You see I am not the only one here who fights DP every waking moment. Some of you probably feel like you are forsaken by God. Go ahead and tell Him that your are ticked. God can handle your anger. Unleash that anger to a loving God. God will absorb it and use it to help you through the grieving process. I feel for most of us, that we have been to hell and back. Our interpretation of nerve pain is real. There is no way we can avoid it. Every single day we wake up from nightmares. For me, it is unable to breath and a mixture of all the churches I pastured, along with my parents and sibling. UGH!! I hate those nightmares. I despise waking up pools of sweat. I hate playing on the computer with my arm jerking throwing the mouse to the end of its tether, as it ends up on the floor. I hate having my wife wake me up in the middle of the night as I sit in my office chair slumped over sleeping. I hate telling my family I can’t go see them in a play! Or I get to the play and have to go home because I can’t take the pain of sitting quiet like nothing is happening to me. ARGH!
Next paragraph but still on the hate mode. /hehe I hate having to wear them stinkin’ shoes that have lamb’s wool in them and are a type of slipper that can adjust to the swelling of my feet. I hate having to roll my pant legs up because I can’t stand the cuff hitting the top of my foot. I hate losing my balance or getting hit with pain that causes me unbearable pain. I hate laying on the floor because of sharp, stabbing, throbbing, cramping, burning, lancinating (electric-shock like) DarkPain. I hate being told by my doctor to the disability insurance that I cannot be in a crowd with people. I have to avoid close, personal attachments. That I will probably never work again in my life.
This morning as my wife came in and asked how I am doing. I told her with a smile I am healed!! She then went on to say, “Yeah you feel great. No pain, you lost that 50 pounds and are ready to go back preaching.” Then she went to look at my feet and presented her evaluation, “Well your LF has swelling on the bottom. Both your feet are swollen all over. Your LF’s ankle is swollen a lot.” I told her (I didn’t want to look at them) that I need to go take my pain medicine. You don’t want to know the pain meds I take….Take in mind I tried the taste of Vodka when I was 14 for curiosity’s sake. I never smoked cause it affects the lungs for athletes. My wife was the one that introduced me to sexual behaviors and I introduced her to sexual investigation.
Now I have to take the typical meds for depression, nerve conductivity, sleeping pills, diet pills, and stinkin’ morphine (300 mg and 4 tabs of oxycotin as needed). This morning when I sat along side of the bed. I said, “Lord, can you remove this pain from me. I am stuck in it and I can’t get out. I can’t stand it, Lord. It hurts so bad. At the end of my conversation with Him, I said, “May Your will be done.”
DarkPain, you may win the battles here and there. You might visit us at any time of day. You hamper us as wage earners. You, DarkPain are the reason we can’t have a fulfilling daily, walk with people. You cause us to withdraw. You prevent us from regular play with people and put us in our corner of the world writhing in pain. I hate you DarkPain. I hate you for what you stand for in our lives. Your absence is far from our grasp. You make us lie down and wake us up in the middle of the night for your nightly sweats, nightmares, jerking body movements and no sense of where we are when we wake up.
I call upon God who is my Victor over this pain. My hate will process itself one day to something far more better. We cringe from our daily walk and one day we will wake up healed. I trust in you, my God, my Creator and my Savoir. You and your presence in people as they help me is always constant. I have been told Your grace is sufficient and it is. DarkPain cannot venture into God’s territory of love and care.
Enjoy the helpings of other people. Hate the pain and not take it out on people. Embrace the pain and tell DarkPain that he is not in control. Even though he might be tell him different because he does that to us.
Finally I ask that you forgive me for if I have offended you, the reader in anyway and from writings please forgive me. In no way would I ever knowingly offend you my soulmates and my close friends. I love you all and I know you love me. We all share some of the same pains and daily challenges of stinging, unrelenting pain. Keep your head up and stand in dignity. You are the survivors. You are the most strongest of people in this world. I have had men tell me that I am admired because of the pain I have to deal with every day. These people cause me to feel good because they see and acknowledge my situation.
Well you have heard enough from me, probably too much. I will close this insane examination of DarkPain. When I first subscribed to this forum you all made me feel good as I was shocked that you had the same problems and symptoms that I have. I care for you and I hope that one day we will all be healed. I would hope that God will one day touch our bodies and heal us. This is my hope.
DarkPain
PS: Oh if you find mistakes and miswording sorry. As I typed this and was at the end of my paragraph I said that I don’t ever want to read this again. I am done and moving on in my desert dwelling walk with God. CYA
There are three kinds of people in this world, those who can count and those who can't.
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Post edited by: DarkPain, at: 01/14/2010 02:14 AM
I am privileged to be part of this wonderful family. You all help me keep my sanity when the chronic pain puts me into severe depression and pain. I value your opinion and your advice.
I am not a medical doctor or a trained pain management person. I want to give hope as you all have given me hope to live with RSD. DP
"I have suffered from depression most of my life, but had some long, non-depressed times. The last 16 years have been an on-going, constantly worsening nightmare for me medically, socially and with my family. 11/2008 to the present has been the worst time in my life, and new things just keep piling up. During that time I’ve gone from being mostly homebound to being totally homebound due to the errors of about 2 dozen doctors who overmedicated me so badly that I came home w/ 4 conditions I didn’t go in with. I spent months wanting to die, and finding MDJ may well have saved my life. It’s one of the worst feelings to know that nobody on earth needs you for anything; but now that I’ve been a group leader for awhile, there are people here who need me. Thanks MDJ." (Sylvia4648)
