My pity-patty party must end!: There are... - My MSAA Community

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My pity-patty party must end!

TonyiaR7
TonyiaR7

There are so many wonderful, blessed, talented, gracious women and men going through their trials with life and MS. I complained much this summer and shed many tears. I have never experienced pain like this ever. I am already on pain medication and Neurontin and trying to give Trileptal a try. Spasms were bad this summer. These symptoms are bad in the winter too! Thus cold and burning pain, prickly-pin pain in the face, legs, feet, arms ... is the worse I have experienced in so many consecutive days. And then are family issues. Everyone experiences something.

With out my faith in my God, and husband/youngest son, 84 year old mom and folks on My MSSA Community, FB, church... people in passing who lavish me with love, forgiveness and support, thank you for trying to make feel special. I am thankful. You may not hear from me for a short while. My troubles have taken a toll, I need a break. I need inward healing and slowly return, until I can cope with this new physical state. If you have suggestions, or words of encouragement, I appreciate them. I guess I am in a very humbling state at the moment. So please be gentle. Pain can wear you down.

Prayers for all. Keep persevering. Do not give up hope. Keep smiling even if you have to draw one on. You are not forgotten. I pray for a cure for all with any form of MS, terrible disease, affliction, and any burdens of life. Cherish joy. Look for what is good, right, commendable or beautiful. Cherish those moments.

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Hi Tonyia, at the end of the day, all you need is hope and strength. Hope that things will get better, and strength to hold on until it does. Prayer may not change the situation but it may change our attitude towards the situation and give us strength and hope which can change our entire life. May God keep you in His tender loving care, blessings Jimeka 🙏 🦋 🤗 🌈

I always hold on to the phrase, this too shall change and thank goodness everyday is different! Keep hope . My husband will tell you I a have a few days a month in a row that I am in a lot of pain and a emotional trainwreck.I have connected the dots and it is around the full moon,I guess the pain is to keep me from turning into a werewolfe.My dr chuckled at me when I told him it is around the full moon,but I think I may be on to something. You are never alone here, we really "get it". When I start howling at the moon, I will let you know:) pam

I’m sorry you are going through such a rough time. I’ll continue the prayers on your behalf.

TonyiaR7
TonyiaR7 in reply to greaterexp

Thank you for your words of encouragement and prayers. I haven’t lost hope. Each day is different. I notice my attitude and emotions was effecting my pain level. I wish I could sleep longer each night. But I went from 2 to 4 hours before the pain wakes me up. I am still taking medication that the neurologist gave me. I haven’t given up hope. I had to start cleaning the junk out of my life, like forgive my son who is recovering from drug addiction. It was a very hurtful , scary time. I am persevering. I am returning all the clothes I bought when in the peak of pain. I pray I will never do that again as a way to block the pain. There can be worse things but this is not the right way. I had to forgive myself from this shameful act. . Thanks for prayers.

greaterexp
greaterexp in reply to TonyiaR7

It must have been so hard to not only go through that time, but to share it here. I very much admire that you have shared it. I can barely stand looking at Facebook, where people try to portray their lives as perfect and themselves as perfect. But by talking frankly about your depression and the effect it had on you, you are helping the rest of us. God will use that for good. He knows that we can try to self-medicate to deal with intense pain, either physical, emotional, or both. That "medication" can take many forms.

I'm so happy that you have forgiven your son so that you both can have peace. I hope that this is a start to a better relationship with him, but even if that never comes, it was very important for you both.

Thank you for sharing of yourself here. You're a treasure. I pray God gives you all you need for every minute.

I hope you are feeling back to yourself soon...or at least a new version of yourself. This illness has a way of breaking us down, for sure. It sounds like you have a good support group and faith that will sustain you. That is huge. Day by day you will make it. This group will be here when you are ready to jump back in. Wishing you well in these trying times. Blessings....

Well, I have promising news!

Presently, the physicians have me Neurontin (gabapentin) for managing my pain. The past 2 days, I had less pain in the afternoon and evening. It’s not perfect, but it gave moments to rest and accomplish a few things.

I am happy to write the discussion questions for the book club. I hope I can host and/or facilitate the meeting at my home, for a few women from my church. I hope I can teach a music lesson to my only oboe student.😊💕

My care team of physicians agreed to send me to a physician for medical marijuana since it is approved in my state and for my condition, MS.

So I have an appointment this week. If this treatment works, then the doctors will slowly reduce my opiates, with the hope that I am opiate free. I hope and pray this is part of the plan that God has for me.

I thank God for you all; He has started to renew my spirit of hope with a positive attitude.

Thank you for your wise, caring, loving words. And of course, your prayers.

Tonyia

I just started on gabapentin and its amazing for my nerve pain! Wish i had asked for it sooner! Glad its helping u! Hope u get ur medical marijuana 💜

I am glad it is working for you. Gabenpatin worked for me in the past. But now the dose has to be so high to cope with the pain.

Sounds like lots of positive news!! This is wonderful to hear. Wishing you well on this new treatment plan. Please share how it all goes. You said you were hoping to facilitate the book club in your home. May I ask what book you will be discussing? I am always interested in recommendations. Blessings...

We will be discussing “The Boys in the Boat”, by Daniel James Brown (Nine Americans and Their Epic Quest for Gold at the 1936 Berlin Olympics). It is also about Joe Rantz’s life who was one oarsmen for rowing the Olympic Gold.

Here are a few others

Our next book is Midwives by Chris Bohjalian (excellent; you can’t put it down)

The Crooked Little Road to Semj-Ever After. Happiness a memoir by Heather Harpham

The Half-Stiched Amish Quilting Club by Wanda E Brunster

Home for Unwanted Girls by Johanna Goodman

Lilac Girls by Martha Kelly

If I cannot facilitate the meeting there is always a gracious volunteer from the group.

Thank you! I have not read any of those. I love to read as long as my migraines are cooperating and I can focus. I will definitely look into these. Thanks, again.

I contacted the national library of congress. They send out audio books for free. I cant read like i used to cuz of blurry vision and migraines and its been awesome. I can now gobble up books like i used to!

Really?? How do you listen to audio books? A particular device or what? I am electronically way behind the times so please excuse me if that is a stupid question.

Not a stupid question at all - they send a tape player like thing. The books they send u plug into the player and u can either plug it in and listen or carry it around as it has a battery

I need to look into that. That's very cool. I find myself having to reread some things to grasp the meaning sometimes. I wonder how that would work with an audio player? That is, could I still follow along or would I get lost? Hmmmm, possibly worth exploring at least!

It lets u back up 15 sec increments just in case. Its all digital. Just google talking book program. Wen u call u pick the state ur in and they connect u i think.

I use Amazon’s App, Audible, which gives you a free trial period, then you pay a monthly. This way I can listen from my iPhone or iPad. It relieves my vision or I can read along with less effort. I forget the price.

U can download it to ur phone too. I chose not to do it that way cuz i am running outta space on my phone. They give u several options.

I had to have my neuro sign the application cuz they have to know u qualify. My neuro said MS is an automatic qualifier

Awesome!

Prayers going up for you Tonyia. Praying for relief for your pain and that they find some meds that will help you.

I still haven’t been able to get pain management to do anything different. Their only offer is epidurals and I’ve had my share in the past and they didn’t help.

Hope you have better luck.

God bless

Donnie

TonyiaR7
TonyiaR7 in reply to Doubled51

I think it’s either time for you to change and/or give then feedback and see if they can offer something else. I have tried different pain management and rehabilitative services. My first physician, Dr Richard Zorowitz, was fantastic but he moved so far away, now in Washington DC. Then I found one local until their practice stated they would no longer do opiates and he referred me to my present pain management specialist. I also have physiatrists. I definitely believe in PT/OT.

It's ok dear every one has to complain from time to time, I'm sure no minds if you need to complain. I know I don't sending you hugs of love. sending everyone HUGS of love. Mary

Yes, this disease can be painful, between muscle spasms, nerve pain, or poor posture or gait that causes you to compensate in a way that isn’t good for your body, difficulty swallowing. Like poor balance or feet problems that results in a bad back or throwing your vertebrae out of alignment. Pain is a subjective.

TonyiaRobinson7 sorry for the length of time it took me to respond but I’m glad I got to read your post, with what you’re going through and are still able to be so positive it will help me to keep going 🙏

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