Today because of the sadness of loss, hearts go out.It made me have to think.How love is so painful joyful healing and crushing etc.we are never alone in the many stages of grief.Loss of a loved one or loss of our body functions which are not comparable.How we deal with either loss is very individual and how we show that or dont.Survivors guilt has crept into my life numerous occasions.I wanted to run to my dear friend I met on this site who may live down the road, but I couldn't get out of bed today and had no info..than I stopped, said my prayers and knew the Lord took over this need.
I have taken my questions to the Heavens on many occasions.They are heard.Answers sometimes come slowly, fast, some I am waiting.Suffering has opened my eyes to more compassion than I thought I already had.You all are so important just even in the notes you write, pictures you share and sometimes the anger etc you share...bless me.I want to thank you all for that.Anyone at the end of their rope, tie a knot in the bottom of it when ready and climb back up..we wait for you.With all our hearts.jackie
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What a Great Post Jackie 👍. This site brings us lots of prayers, hopes, and positive thoughts 😉. Many many thanks to everyone that makes this site so great 🙏🐾🐾. Ken
I am sorry for your pain. I wish the end were here for me sometimes. I feel deserted by family and friends. It is such a horrible disease that I am realizing now. I hurt so bad that I don't want to move, and yet I do all kinds of things (like taping a wrist or trying new things I hear about) to find a solution and yes, I pray a lot. Worst of all I have had to deal with people hacking (literally) my uncaring neighbours!) into my accounts and devices and house and my husband who finally sees my struggles now thinks it is all in my head. I hope for you. I would rather feel totally alone and hopeless than feel good to have anyone join me in suffering this horrible pain from this horrible disease. Still losing my memory too scares me to death and the weakness of my body. I heard new hope about sortilin. I hope to find out more. If not for the pain, maybe I could think better...
you are never alone...ive had a gambit of responses to disease....and as I lay down it seems to be...party on she will get to it when she is well....I am blessed with a good neighbor but silently and this group...I go to Heavenly Father...with gripping anger prayers laughter, happiness sorrow.and many why's and why not....loss of self and loss of others is very hard but not an end for me.I thought the MS would take me than the many heart surgeries.....now it is to do day by day and try to serve and love somehow.I guess..to bloom where I am planted?
I knew a time when I was younger, I didn't believe it. I knew a time when it was evident, and I feared it. Then finally after too many years I got a diagnosis over the phone from a doctor who my doctor referred me to send her my last MRI's at her MS clinic. She was the only doctor in my state recommended by the NMSS. Before Christmas 2006 she told me over the phone I had MS. She said she was sure and saw it all telling me about what she saw and wanted me to go down there to our state capital where I could repeat testing through their clinic. After the testing she wanted records. All the records I could find and the killer to me... she wanted the name of the doctor who did the first MRI tests. Everything turned to caw caw after telling her. She suddenly and suspiciously treated me badly. I researched it, and he was her paycheck as she was a teaching doctor. My life was suddenly much grimmer. She left her job for the West Coast after referring me to the CC. They told me to go up there for testing. To my face they told me either you have MS or Cancer. Later, after I got a bill for over 22,000 and I started making payments until my Insurance would take my appeal for them to pay. Suddenly they changed their tune and their report, except for the results of the Tourtellotte spinal test (abnormal) became hazy. No doctor would help me. I woke up blind in one eye suddenly one morning after a week of migraines and pain in my eye. An eye doctor that ran many tests sent me to a retinal specialist. Optic Neuitis damage and other things they found. WV is a different world. My Primary physician at the time, a good one, was so confounded. Sadly he was leaving to be a pediatric doctor. I got back some vision but OCT testion showed the damage. Another doctor later diagnosed me after sending me for another second opinion. He put me on IVIG infusions and then Copaxone. After my body rejected Copaxone- I was losing weight, like 20lbs between doctor appt's and shutting down fast, I had to stop it. Then Avonex. I had to get a hip replacement so it was stopped for a while and I just could not take those shots anymore and the surgery a long healing time. Still at times I thought I will take care of me with God's touch. I am 68 now and the pain is really bad. In 2018 a doctor took me off my Xanax cold turkey. I had been on it for 30 years. What he offered me was not good. I have suffered horribly, took to falling and well... you know how it goes and I am SP. I am trying just to get something for the pain. Nobody cares. There are many people addicted to Opoids in this state and I am punished for that. I have all manner of vitamins, enzymes, and some herbals that I take religiosly but the pain and spasticity make me want to quit. I do take CBD oil but never used Marijuana. I am Sativa ready baby. I just need to find a way to get it. They passed the usage of Med Marijuana in this state 2 years ago. Many could get help for their addictions and chronic pain but the wheels turn so slow in this place. Some times I think I would try it illegally. But with my luck, I would be put in jail. I keep praying.
This is a serious concern for hand damage people. I know. I have to try and cook to feed my husband and myself. God has been good. I have caught things on fire. I remember hearing about a fire at the house of Annette Funicello years ago and I had to wonder. You can or at least could find her story on YouTube. It was very sad and it scared me. My heart went out to her and her husband who tried everything.
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