Lost my smile

[agapepilgrim]

My friends here say I haven’t lost my twinkle or “beauty” but even my husband tells me how sick I look now. Just to share the change I am posting a photo of me holding my Mandi on her last day. My other source of joy was my daughter, my friend, and she has totally defriended me “because I don’t control myself and all I think about is MS”. She even told me this forum was negative for me because it makes MS a focal point. She has had Crohn’s disease for 25 years of extreme pain, and told me she would never join a Crohns Group. So, we are incommunicado.

[Debbie_2]

Your a beautiful lady !Prayers for Your smile to revive , 😊prayers for you to find your joy -

Big hugs enclosed!

[jimeka]

agapepilgrim well yes your daughter is right in saying that this forum is a focal point, and yes it is a place that we can come and be negative or positive. It is a place where we can share how we feel because we know that others on here understand. Like we understand what you are going through or at least we try to. Ms plays with our mind, mentality, physical ability, the list is endless. We have days where we forget, we cannot remember from one moment to the next, we hurt, we feel alone, again the list is endless. It is a slow form of torture as you never know what it will throw at you next. BUT, I know that you have a strong faith, and you help me so much in the way you display your faith. You are not afraid to be counted. I hope and pray that your joy returns. Sending you love, peace and joy and a huge big hug, from someone who respects and loves you. Dig deep agapepilgrim, you can come out smiling, I have faith that you can, blessings as always Jimeka 🌈 🙏 🤗 💐 🍫 ☕️ 🍔 🍟 🍩 🍦I wish we could sit together and share all these xx

[agapepilgrim in reply to jimeka]

jimeka WOW!!! How did you know what my favorite foods are!!! Thank you! I will keep a picture of you (have it on my wall with Tutu) sitting at a cafe eating all that food, with flowers on the table, holding hands and praying first, then laughing at all the crazy situations!!

[jimeka in reply to agapepilgrim]

agapepilgrim birds of a feather! 🤗

[agate]

agapepilgrim , your daughter is your daughter and you are you, and I hope she realizes that. I think she's being unfair to you. It's possible she's having trouble dealing with the fact of your MS and finds it easier to cut you off than to face that fact. This is very common among family and friends, I'm afraid. I have a feeling that, since she's your daughter and will always need you, she will regret her attitude and return. Lovely photo!

[agapepilgrim in reply to agate]

agate thank you for that outlook. It is ironic that during the 6 first 6 months of my flare ups and total personality change, uncontrolled anger, my husband would get sooo angry and say that it was all my fault, etc., My daughter told he was just very afraid of my new condition and his fear was coming out as anger to me. Now maybe her withdrawal from me is because she can't accept or "handle" my emotional outbursts. For 8 years, she has been inviting us to her home about every 3 months or so (250 mile trip) when convenient for her hospital night shift job, and we have stayed a few nights then come back home. She moved, and needed a portable dishwasher; we found one; delivered it to her. During that visit, she yelled at me for the first time in her life, and told me she was tired of the way I was acting and could not put up with it anymore. It escalted from there. That was May. We have not been invited back since then, even missing for the first time in 22 years her son's birthday. Her excuse was they were all too busy. Just shredded my heart. And still they are too busy to have us visit. You are right, she can't face my condition, or accept that my actions are due to right brain damage. Guess she wants to remember me as I was. one of my favorite scriptures I need to apply, "Trust in the Lord with al thine heart; and lean not in thine own understanding, but in all thy ways acknowledge the Lord, and He shall direct thy paths.,,,,,,,,and the peace of God which passeth all your understanding shall abide in your hearts." So I shall try,

[erash]

agapepilgrim

I bet you wish you could forget about MS and not have it be the focus of your day. Likewise, I bet your daughter wishes she could forget about her Crohn's disease. Perhaps she just needs some TLC?

We often grow up being the focus of our mom's attention and as adults, it's sometimes difficult to realize mom isn't impermeable.

I wish and hope you and your daughter can find a place of peace and understanding 💕

[agapepilgrim in reply to erash]

erash Yes, her Crohn;s has flared due to elevated liver rates, and having Prisolec taken away. And now withdrawal symptoms with migraines. And a lot of job stress; applied for professor job to move into education field; high stress is keeping Crohn's flare up. And the usual problems with 20 yr old (in college) old 22 yr old (autistic) sons at home, single mom. Yes, we have been her total support system thru Crohn's and 2 abusive marriages (paid for the divorces, etc), supported her while she got her degree at age 40, then masters last year with 3.9 avg. She is more of a fighter than me!! But, I cannot be her emotional support at this time when I cannot even control my emotions, I have more and mroe cognition failure, and weighed down with fatigue. But, I must accept she is using all her "spoons" to live her life, and cannot deal with a 2 night visit from me. Still don't understand, and I read the other day, "Only when we find a reason why destuctive things happened, can we move on, leave them behind, and move on to the next challenge," So, I pray for understanding, My TLC cup for others is empty right now. I respond to all of you because I know you understand and accept me, but no one else does in my life. Many of you have the same problem, so it helps me cope, breathe, and be.

[erash in reply to agapepilgrim]

agapepilgrim

I wonder if acceptance requires understanding the cause?

Sending you 💕

[agapepilgrim in reply to erash]

erash psychologist say yes I have to understand why to let it go. But only God knows the reason a 14 yr old boy would molest his little sister, or why my parents were never home and were cruel. As my brother said s few weeks, they should have been made into eunuchs. Lol. Some things I say I am putting that on a shelf until I can forgive without knowing why. That’s called FAITH.

[SlmHarris]

So sorry your daughter feels that way! I myself feels like the more you learn the better off we understand ourselves! I have learned so much from reading about other MS patients and there experience.

I have a young friend with crohns. When u explained to her how to learn more on crohns she was happy to learn.

We all are different on how we choose to learn about our disease. Some like to do research, some join groups and some try to not find anything out.

I hope one day your daughter realizes everyone finds comfort in different ways. She will come back around one day.

Best wishes!

[jimeka in reply to SlmHarris]

SlmHarris how are you doing? How is the new treatment working? Hope all is going as well as it can be for you. Blessings Jimeka 🦋 🌈

[SlmHarris in reply to jimeka]

So far so good! I am still having terrible headaches. I had an MRI yesterday to check if there is any growth of my brain tumor that can be causing it. Should gear something today

How are you doing?

[jimeka in reply to SlmHarris]

SlmHarris i am not even going to complain with what you are having to endure. Please let me know your results of the latest MRI. Headaches are not nice at the best of times, however they are caused. Ms seems to cause a lot of migraines something I suffered with as a young woman, they said then that it was hormonal, but who knows how long the ms has been lurking. Anyway, please keep in touch, blessings Jimeka 🦋 🌈 🍫

[SlmHarris in reply to jimeka]

Thanks!

[Nom_De_Plume]

@agapepilgrim

You certainly look less than joyous in this photo, holding Mandi on her (?) last day. 😔

Beauty is also within, of course. I think of your soul when I speak of your beauty. When you suffer, don’t feel well, and aren’t in a happy mood, you can still be beautiful.

I’m not sure about your daughter, but, like your husband, she may benefit from reading something on pseudo-bulbar affect.

🤗 hugs

Lisa

[Hidden]

Absolutely! Non_De_Plume said it well. True beauty comes from within. Whether or not someone appears beautiful is significantly altered by the beauty from their soul that shines through in their personality, compassion for others, kindness, caring, etc. No doubt you well know this. You have exhibited such beauty in all your posts and replies I've enjoyed reading. Even in your post I'm replying to, your showing your beautiful soul in the love you have for Mandi and your daughter and in your grieving.

Unfortunately only those we love most have the greatest capacity to crush our spirit. Your daughter is likely dealing with her own demons.

We are here to support you through this sad time. Please keep engaging with all of us. You help lift our spirits to get through our own struggles with MS.

Michael

[mrsmike9]

Losses. We're surrounded by them and it sounds like you've really been hit. Loss of your daughters companionship, your furry baby, and stuff MS throws at you which keeps you from moving and thinking correctly. That's a ton! Feel your grief and losses. Then you have to find the strength within to move on. Try to find something that interests you to give your life meaning and to use as an escape. Do you have a hobby or a group you take part in? Use those things to give you life meaning again and you will find hope and joy. It's nice to even read a book and submerge yourself in someone else's life to forget your current situation. Best wishes!

[agapepilgrim in reply to mrsmike9]

mrsmike9 thaks for the advice, all I have read, heard fro counselors and neuro. I was a book worm but now dry eye disease made worse with MS everything blurry when I read over10 min (squinty now); crochet and knitting-now right hand uncontrollable and pain; hiking we loved (eve 10 day backpacking- now extreme back spasms and fatigue and unbalance, also canoeing taken away. Gardening take away. Churchattendance seldom, traveling to unknown sights- all taken away along with a good nights sleep gone. My husband said the other day “ I thought you wanted to do that (shape and trim our entrance evergreens). Response, I want to, but what I want to do and what I can do are 2 different lives now. Sewing is gone. I thank God every day that I can take care of personal hygiene and walk, but cognitive decrease and emotional increases are difficult to handle. Thank you for your inspiring words. One thing I haven’t lost - the love of God and the friendship of Jesus.

[mrsmike9 in reply to agapepilgrim]

More losses... So very sorry. Can you think of ONE thing you can do, and enjoy, that you can do? If you cannot read, there are always audio books.

[agapepilgrim in reply to mrsmike9]

mrsmike9 are those from the library? DVD to play on pc? Or load to kindle? That would help me fall asleep!

[mrsmike9 in reply to agapepilgrim]

They're at the library. I like to find what I want and have them hold them at my nearest library. Then I can just go in and pick them up from the hold area and not look around. I almost always have one going in my car because I have to drive a lot!

[mrsmike9 in reply to mrsmike9]

Oh, and you get CD's. They're wonderful!

[agapepilgrim in reply to mrsmike9]

mrsmike9 ok. We used to rent them from cracker Burrell when we were traveling tally full time in our motorhome for 6 years. Rent and return any Cracker Barrel. Totally forget! Hurts my legs terrible to travel now. Legs start spasms. But I could play on pc. Thanks!!!!

[kdali]

Wow, that's awful and I'm sorry! It's not anyone else's place to decide how is best to live with your disease.

[4fishylady]

agapepilgrim, I am so sorry to hear of your current situation. I will add you to my prayer list. Read in the Bible the book of Psalms, especially Psalms 37. It is so comforting to me when I get down from the issues in my life. God is so good. God is my Refuge in times of trouble. I recently bought a new coffee cup at a coffee shop. It has written on it "Never let anyone dull your sparkle." It cheers me when I am down, and reminds me of God's Word. God gives us a sparkle, if we believe in Him; "Let your light so shine.....Shine as lights in the world.....Arise, shine for your Light has come.....That your joy may be full.....The fruit of the Spirit is love, joy, peace." May you know His peace today.

[agapepilgrim in reply to 4fishylady]

4fishylady yes Psalms I read almost every day I have that psalm underlined. Right now I am trying to “rest patiently in the Lord”. My devotion book by Sarah Young always uplifts for awhile. Just praying what God wants me to do. The doors closed with no medical response almost seem like a sign for me to “let go and let God have His way” without the medical field or $300 monthly pills, not counting Tecfidera. Thank you for your reply. It gives me strength to read fellow Christians surviving the similar symptoms. Listen to a song on you tube “I sing because” by Squire Parson “ uplifting

[Doubled51]

Agapepilgrim. I've never read a post that you didn't mention your faith in God. Thru all you your pain and tribulation the light of Jesus continues to shine from you. There is nothing more beautiful than sharing your faith even when nothing else seems right in your life. In this ms world we live in let us never forget that we still have a promise that in our new life there will be no more pain no more sadness no more sorrow. We will have exceeding joy in a new body in a place where the word ms is no even possible. You inspire all of us when you share and hold on to your love of god thru all the things you've lost in this world. But we have a promise that all things will be restored and more when we reach our final destination. Heaven. Every time you share that your faith is still strong your beauty shines to the world.

May God richly bless you.

Donnie

[4fishylady]

Agapepilgrim I am so glad you love Squire Parsons' singing too! His voice is so wonderful to me! I'm praying for joy and hope to come back into your heart and life today.