MS Sunday and MS

I laid in bed until 5 am.Sunday almost over.I know that the Lord understands I praise him in my heart but really want to take sacrament.We all have our way of worship and each so very special.We Arent all Christian but we can and do love one another.Each plays a vital role in healing, life, death, happiness on this earth and respectfully I am grateful to all.MS and its other companion diseases test us to our max but we were not put on separate planets we were meant to be together.I never turn down prayer and friends who have no religion do not turn them down either.MS has made me scream to the heavens, and be thankful as well.I get the "How could a god let this happen. he must be very mean"...oh I get that.For me agency or choice will never be taken away and this earth is degrading, genetics are great and sometimes not.I see miracles in research etc and love id never felt if id not had something(many things) go wrong.Peace on the all ....

18 Replies

  • jackiesj thank you so much. My greatest loss in the past year has been my loss of ateending church to worship my Lord. It's the greatest test yet of my faith and I have had some Red Sea experiences on the past. Fellowship with God's children is/was a source of joy and strength and wisdom. How I miss my weekly spiritual food. So I will pray for you and you pray for me. Two new dr appts this week. Lost count of the "specialists" I have been to the last year, and frequently the last 3 months. But as Job and all the great ones before, "yet, will i rejoice in the Lord". "In His Presence" by Brothrer Lawrence has new meaning to me. Also, Hinds Feet on High Places. Storms of Perfection, also. I am learning to lean as the song says, and realizing it is only important to please God not people; to obey God, not people; and depend on His love and understanding and not others

  • agapepilgrim and jackiesj i understand how you feel. All the churches around me are being sold off as residential homes. All my original Christ filled ministers have been taken home to Glory. I don't drive anymore and as sitting on hard pews is a problem, I do not attend worship anymore. The churches that are left, there is no fire, so I stay home. If I want feeding I turn Joyce Meyer on, she calls a spade a spade, her ministry was the first over here to ask for monetary help for the people of Texas. Have a blessed Sunday, blessings Jimeka 🦋 🌈 🤗

  • @jimeka you called it. I dreamed up in my head s cushioned back and neck extensions , all padded, and left it where we always sit. But the bad rash stopped me cold, now spasms worse, etc. I live on pjs except to go to doctors. Fatigue!! But I read 2 devotion books, and audio devotion at night on my phone (vision inconsistency). We gotta find ways to fed our souls! God bless you. Going for nerve test tomorrow. Have no idea what to expect! But God is able!

  • agapepilgrim hoping and praying all goes well, please let us know how you got on. You never know your antics always make me laugh. Lol. But on a serious note, keep smiling, hugs Jimeka 🤗 🙏

  • @jimeka today the antics in my mind cannot be repeated. The nerve tests were a joke! I could have told her the results before the nurse went through her job of putting electrical stimulators on vaiours parts of my body, starting from my fingers to my shoulders. I do believe a Taser gun would not have hurt anymore! When she got to the fleshly part of the underside of my upper arm, my whole body jerked off the bed!! Yep, just picture a Taser gun torturing you - now they can't hurt me any worse if a lawman came after me! (for holding the doctor down; wiring her up; and saying, this might sting a little!=that's what they would arrest me for) (course then, I would start crying and raising my voice, and saying, don't you see I am just sick of all the doctors giving me wrong diagnosis, the misplaced needles, the confusion of all the inadequate meds, I just want to end all this MS tsusami! thats why I yelled and said try sticking those needles in your arms; and she pushes the panic button underneath her table.... and they interpret that as suicidal and want to admit me to the "mental health clinic" , you know, the looney tooney bin! And I yell back and tell them I went there for a week and the head shrink asked me if I would like to go home just 4 days into my stay because I was distubring the other paitients (That was because I asked the counselor during "group therapy" who made her god to decide I was anti-social if I stayed in my room and read a book for over an hour???..........Hey, isn't that ironic, my current neurologist told me during one question and no answer visit that I read too much!) Don't you just love it when the nurse says that: You are going to feel a little sting!" Right, and every nurse, every doctor, who performs any painful test on a patient should, in their graduate studies, be required to have the procedure done to them!!!!! HOW ABOut when the nurse blows a vein while taking blood or inserting an IV, and saying, oh, you have difficult vein! Duh!! Do you think I was just whistling Dixie when I asked for your best phlebotomist, and use a butterfly needle (unless IV) and put a needle to the vein every so slightly to make sure it doesn't run and hide before you jam in into my arm??? A few good nurses will do that, and about, mmmm......1/100th of my experiences with blood drawn and IVs inserted are just a "this may hurt a little." Frank gained new respect for what I go through when he saw a nurse stick my upper arm about 20 times just to dry to deaden it!!! I heard him repeat the story to others and I wish I heard half the empathy to me as he uses to others in telling the stories. "(And then they cut this big slice right off her arm for a biopsy of the rash!") How could he possibly have the audacity to "scold" me when I get upset at him and cry (well, raise my voice somewhat) and tell him to go read a book on MS or read some of the horror stories on this forum and see how long he would last. Really, though, he topped himself today when I compared the needles stuck in my painful shoulders (that are even painful to the slightest soft touch from him) to someone sticiking a needles in his painful knee (hurting at the time), and he sternly said, you have no idea how much my knee hurts. (Aren't you proud I didn't answer back and say if you won't even take a tylenol for the pain, you don't know what pain is!!!!) But it's all relative. When folks like us have lived with pain for 50 years, and a good morning is when you wake up and there is no pain anywhere (of course, I haven't sit up, put my feet on the floor, and started walking to the potty room lol), then pain is definitely relative. As one person wrote on this forum, our level 6 pain is to the world about a 10, and their level 10 pain to us, oh, I;m fine today, the pain has let up a little bit! It's like the incident of my grandson's birth: Daugher Rushed to hospital cause water broke, after very short labor, baby delivered, and doc said, I am so proud of you enduring those labor pains with no pain meds because the baby came so fast and her reply, Oh those pains were nothing compared to the Crohn's disease pain in my ileum ( connecting small and large intestines I thkn) I experience EVERY day. As a mother, I had to cry to imagine that kind of suffering of my grown child. 20 years later, I can have true empathy because I know exactly what she is going through. Before the last 3 years, when my 50 year living with MS symptoms became magnified about 100x, I couldn't imagine her daily living with pain, and wondering if she could stay upright rather than doubling over in pain and tears, yet she works her 12 hour shift as respiratory nurse, (cause she is single mom of 2 boys after 2 abusive husbands who didn't or wouldn't accept her pain as real)

    . NOW I know her pain (I think), and yes, at times it is worse than labor pains or pleurisy pain(yep, had that a few times, with pneumonia), and yes, our happy days are those days when we wake up with no pain (but then we would probably be inHeaven "where there is no more sorrow, no pain, no more tears, all is joy and peace and love. (But, wait, we NEED each othere HERE and now, so don't go). If Jenn can put up with her horrific treacherous disease (that's what her GI told us - a treacherous disease. Looked up that one, means walking on thin ice and never knowing if next step you break through and in sub zero water! - would that be us?) That was a wise doctor. Frank asked him what could we do to help her the most? And his answer: complete trust and empahty. Don't offer solutions; there are none; just be there and feel her pain and support her. Which we have tried to do, but I can truly do now during my own treacherous disease!

    Anyway..(I think I indulged in non-linear thought and writings tonight as one of my neurologists wrote about me, but, hey, linear conversation is boring; so is coffee talk --other neuero said I couldn't express my symptoms except using coffee talk (?? anyone know what that means!?? negative or positive adjective??), Today the new botox pain care neurologist said she would "get back with me after studying the tests taken today." I told Frank just stuff me away in a nursing home. He had usual response - anger. I just laughed to myself. This started out with the intention of bringing a smile, but then got lost. Nerves without myelin in communication center will do that.! (If only the men in white with strait jackets would believe!) I admit I am rambling (hopefully rambling rose). 5 hours ago I took my prescribed Restoril, Valium, Backlofen, 800 mg potassium, melantonin, sleepytime tea, turned on sleep oils in diffuser.....amaybe they will intime to sleep a little, then prepare for new GI tomorrow (today at 3! haha)Yep, could play poker with my stack of cards from specialists now! My wind chimes are all playing, Irma coming in as "just a depression" here in KY,

    Jenn and boys recorded a little version song for me from the movie Finding Nemo. "just keep swimming, swimming, swimming. Just keep smiling, smiling, smiling." Gurgle, gurgle gurgle!

  • oh my heart and I want to give you a big big hug that doesn't hurt....

  • But it was supposed to bring a smile lfrom my writing! I tried to be friends funny about it!!As Tinkerbell says d the Peter Pan, " you have left st your happy place"!😜😜⚡️🌨🌧⛈you mak my happy 😊 happy place come ba! But here goes my back so back to bed! But are precious jackis!

  • I will pray for you & please do for

    me. We moved also & it's a bit away so I need 2 wait for summer 2 be over so I can go on my chair 2 the Church at the school here. I liked my Church where we. were but never thought about it. Sometimes my mind goes blank on things I have 2 have.

    Hope the Dr's are helping U & find a way 2 make things easier 4 U.

  • Thanks, agapepilgrim for your insightful comments. I love our rich heritage of hymns and gospel songs, as we sang in a choir for over 40 years. I am sorry that you can no longer attend. Could they record the service for you? Thank you for your reply to Jackie's.

  • @joc-42 they do and they and I watch the dvds, and receive encouraging words of wisdom, but it is just not the same as "gathering ourselves together" with a group of God's children and feeling at one with the Holy Spirit "rushes through like a mighty wind" and our souls are refreshed. But, as Paul said, "I may be discouraged, but I am not in despair; I may be confused, but not cast down." Thank you for your concern and suggestion, though. It let me know you care. I have me old CDs all downloaded onto my pc (big player quit), and either that is playing, or my phone is playing the wonderful songs that turn our hearts toward Christ, and nothing is important (negligent doctors, inept insurance clerical workers, and support nurses who sometimes live in foreign countries and I can't even understand!) but feeling the joy of His Presence, as Andrew Murray wrote about in his books. May God give us the grace "to bear this thorn in our side" and prove to the world that His grace is sufficient for us!"

  • I could not agree more to each comment you made. I do not attend always because sometimes it is too tiring because of too many activities. We do have a very good class at church and good friends there. Glad you get the DVD's. We can hear our most recent sermons on the web if we miss. scripture, music, prayer, fellowship and quietness are so enriching to us. So good to have mutual values as believers.

  • agapepilgrim Loving your posts! "it is only important to please God not people; to obey God, not people; and depend on His love and understanding and not others." Keep it coming! :)

  • Agapepilgrim I'm so sorry for the Jumping thru hoops we must do.Yes to prayer....!Job has been a favorite of mine and knowing that HE understands so well.xoxoxox

  • @jackiesj let's use the hoops for twirling like hula hoops! Got my first one when 9 in 1955-56. I couldn't keep the silly thing going round me; it kept falling! Forgot to put your name on last reply! Now I can lie back down with smile!

  • My wife is a Eucharistic minister who takes hosts to the homebound. I think she does a great job as she spends time interacting with each person if they're able and want to. You should let your church know if you'd like them to have someone stop by and give you communion. Have faith. You are in my prayers.

  • Hat MD I love all these comments!A minister for a wife....How wonderful!She certainly would be a go to for me!TY for suggestion to all on home communion etc.I agree also jmeka, ms pilgrim and all..those seats go ugh for a week until the next time.I have a walker with a seat that seems to help, or I they pull up a metal folding, couch in the coyer is best and sometimes the nursing room for moms.Great conversation and comfort.Plus nothing more spiritual than holdn a baby if they can set on my lap with support.Too afraid of dropping and not feeling it.Im grateful for our sunday conversation and hope others don't mindIt is a blessing in itself.

  • May the Lord bless you and give you peace today and always.

  • Peace to you too, jackiesj ! Yes, "MS tests us to our max!" That's for sure. And yes, we "love one another" all the more, because of our common struggle.

    God bless you.


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