I have tried avoiding this post almost all week... it's a tough one that's for sure. I hope y'all don't mind me venting a bit. Ever since Tuesday this week has been bad, bad, bad. 😢 Let me first say I'm sure it has nothing to do with Ocrevus. It was Tuesday when it all started to plummet from the edge of the cliff. Tuesday was my 44th b-day. No jimeka I didn't let you know for the b day club. Ever since my 21st birthday I have not been much on celebrating it. My 21st was horrible. My grandfather was one of the greatest men I have ever known. On my 21st I was a pallbearer at his funeral. Of course over the years it became bearable but always seemed to be a bad day. I kind of wish they would make a wishing you a tolerable birthday card. It struck AGAIN!!! I received a call telling me they were moving my grandmother, the last of my grandparents, to hospice care. 😕😢😭 The worst part is that part of my family lives on the east coast and I will be unable to make the trip to see her before the time comes, or for the grieving process after. I have been just completly devastated by the day I was born. I just want it to all STOP. Sorry for the negative post, but I really really really need y'all's prayers in the worst kinda way. My exacerbations are kicking my tail. My heart is splitting in two.
Stress related exacerbations ..... arrgg... - My MSAA Community
Stress related exacerbations ..... arrggghhh...
Allen5280
I am so sorry for your loss I know you hear that all the time I have something to say just read this my Birthday is the day after Christmas I hate it. My mom always said we should move your day to May I was all for that but it never happened. Why don't you move your birthday to another day I mean you will know the correct day if it makes you feel better why not do it.
Good luck in what ever you do
Allen5280 you are obviously under attack and we are always hit when we are down, or done something wonderful like you have done in learning to play the harmonica. I am truly sorry about your situation. May I ask the reason as to why you cannot visit your grandmother. Are you far away? Many blessings Jimeka 🦋 🤗 🌈
It's to far for me to make the trip physically. I have difficulty in just making a little over an hours trip to my MS specialist. They are about 1300 miles from me and even trying to get a flight and going through all that is just not feasible.
Allen5280 I totally understand, it is really hard travelling. Would one of your family be able to arrange a face time or Skype for you and your grandmother so that you can talk with her. Blessings Jimeka 🦋 🌈
Thank you jimeka , I'm not sure the on the condition she is in now if that would be feasible or not. She has been in nursing care for the last 15 years or so due to Alzheimer's. I knew this time would come and it's been for some time. I'm was more upset because the day the call came and was handling everything OK till I found out my brother had decided to stay in Huston. Back in 2008 as hurricane Ike approached Huston I was apart of the evacuations flying people out of Huston to College Station and kept trying to get him his wife and his daughters to go then as well. They decided to stay then too. At least then I felt I was able to help. Now I feel so helpless as my hands are now tied and can't do anything to help anyone. Well not in a physical aspect anyway. I am doing better today I went to sleep yesterday and have awoken from my small coma and the rest and everyone's prayers have helped me so much. Thank you
My heart😔💙 is with you Allen5280 .❤️💔❤️
Our birthdays are just like any other day, they can be sad or happy. I know that losing someone close to you is hard, and you should grieve, but after that try to remember the love that they shared with you. That love was a little for that moment and a little for when you need it later.🍫
Thinking of the unconditional love that my mother and grandmother gave me always helps me feel calm, if not happy.
Sounds like your last few weeks have been crappy & your feeling stressed & sad & over whelmed . First my prayers are with you & your family & I'm terribly sorry for your loss . Your birthday is a date on the Calendar but like the other person said , pick a new day for yourself plan a get together with friends & have some fun . I'm all to familiar with loss & having birthdays around the same time. But what I've done is celebrate my birthday a week before my birthday so I don't miss my birthday & instead of people buying me gifts I had everyone being a favourite dish they like to make & we had a potluck party . We played music & silly games . Anything I could think of to make the birthday awesome & help me not think about the stuff that's happened around my birthday . We also sent off Chinese lanterns on my actual birthday & its the day from grandfather passed away . We set them off with notes to him telling him we loved him & missed him . So ya celebrating early was awesome but the Chinese lanterns were the best idea . I hope that the next year things get easier & that you have a great birthday . Stress & ms don't work & when the stress starts bugging me I unplug from texts & phone calls & Social media . I put my phone ok do not Disturb. & have a me day of what ever I want . I hope you have a good rest of your day . ((((HUGS))))) Take Care .... Cat 🐱
Thank you for your support and prayers, they are greatly appreciated
We're thinking and praying for you Allen5280 !
Daw, I'm sorry! I was very close with mine and lost them several years ago. I miss them every day. It doesn't get easier, but it does become normal eventually. What are your favorite memories of them together, if that's not too personal?
My favorite memory of my grandmother is she was my first music teacher. She taught me to play my first instrument, the panio. She taught every single instrument. In my life I have played the panio, trumpet, guitar and now the harmonica. My grandmother could play just about everything. Including the little known thermon and even cowbells.
Sending you prayers
Thank y'all so much it's not just the situation with my grandmother that has me bound up in such knots... I also got news this m9rning that my brother and family have decided they are not evacuating their home in Huston due to Harvey where rain totals are expected to be 2 to 3 feet through next week. Their house floods on a regular basis and I am worried sick, Literally sick.
I appreciate y'all's prayers so much through this all
sending prayers your way my friend.
My hearts breaking for you my friend. Prayers going up. So sorry for your pain. May God comfort you in your time of need. God bless you and your family in these stressful time. Praying your exacerbation pass quickly.
Donnie
Allen5280 , I'm sorry you're struggling with so much right now. Please know that you are in my thoughts and prayers as is your brother and his family. I wish there was something I could do to help, and I hope you will continue to reach out here as needed. I think the Skype or FaceTime idea with your grandmother is a great idea if you can get someone on the other end to help arrange it. Take care of yourself and please keep us posted on how you are doing.
Allen5280 , my heart breaks for you. I'm sorry for the pain you're feeling.
I pray that you will feel the special comfort of God that only He can give.
I'm glad you let us know what's going on. I wish I could fix things for you, but will be praying for you and your family.
Thank you greaterexp , the peace in the midst of the storm that only he can provide, has been returned to me. Y'all's prayers have been heard and answered. I can not thank you enough! 😊
That is wonderful to hear. We will keep praying that God sustains you through it all.
I am here and message, replay as you need and/email.Im sorry for loses and so many at one.I will say I am in joy sadness when you share your joy of grandparents(IM GRANDMAJ)you may feel broken but you are more together in speech than I know of a lot people.Cant go to funeral, I feel the guilt cause my mom is 88 and I cant visit and keep praying to hang on and feel better before she does die.Cant see fam, cant travel.I am here if you would like to talk if you notice me here.Thank you for sharing because many of us LOTS feel like we let ourselves down and others and life is life.Many prayers as I drift to sleep.Hang in there, not a bad attitude, a normal situation for us....welcome.
I'm sending my thoughts and prayers out to you for your grandmother and to your brother and family so they will be strong to get through the storm. And most of all you so that stress can subside and you may breath steady once again.
We are always here for to share what ever is troubling You!
I hope you have some stress relief soon. We all no stress and hear are vultures.
Best wishes!
You're in my prayers!
@Allen5280 I am sure that your grandmother knows your heart. As a mother, she also would never want you to jeopardize your health, including risking it to travel to visit her.
If she has Alzheimer's and isn't lucid, then it might be painful for you to observe this over Skype. On the other hand, it might be helpful for you to be able to tell her that you love her, even if she isn't lucid. You are a thoughtful person so I know I don't have to tell you this and you will sort it out!
Do you think the funeral planning has been done? I don't want to be morbid, but perhaps you could contribute by selecting the music? 🎼 You could also write a eulogy for her and ask it to be read at the service. Just some thoughts on how you might participate from afar if that would make you feel better.
If she is near Boston and you'd like something relayed, I might be able to help.
Sending additional prayers that you will be at peace, my friend. God bless you and your family.
Hi Allen
Maryann here I was reading your post and I feel for you.
I hated celebrating birthdays because on my mom's Birthday my son Josh passed away he was 3 moths to the day that is also when I learned I had MS and at that time there was no cure. They would give you steroids that would make your heart beat fast than slow it down. I have optic neurotis, I woke up one morning and fall directly to the ground.
Things do get better and you will have alot of trials I am not gonna lie to you although it is upto us how bad it remains.
This is a wonderful site I wish it was around 27 years ago. That is how long ago I found out that I have it.
Just rember when you are feeling down or things are not going right jump on the site and vent.😊
oh, my heart hurt reading this Mary, I cant imagine...and the loss of a child especially, and one loved so much...Look up the song "Mary did you know" a song that brings me thoughts of how another Mary may have felt...peace in kaos....I have to look for that all the time...
Allen5280 I am also sad to hear of your difficult time right now. Know that you and your brother are in my prayers too. I agree with the one who said to think about writing a eulogy to be read at the "Celebration of Life". What a tribute that would be for her! I had 2 very sweet, loving Christian grandmothers, but no one taught me music of any kind. What a blessing to have all those memories, of her teaching you to play all those instruments! I will pray for God to turn your sorrows into joys, remembering all those happy times with your grandmother. That is a wonderful inheritance, and it's all yours! Stay well, friend.
Allen - I am so sorry for the troubles that have come your way and that they all seem to happen on or around your birthday. I have 2 friends that hate their birthdays for different reasons. One because it is December 24th and the other because her infant daughter passwed away on her birthday. Each of them has done something wonderful! They have a 1/2 birthday. The ne with the birthday in December celebrates hers June 24th. The other celebrates her birthday March 3 in stead of September 3rd. That way they can still celebrate their birthdays and for the one it doesn't remind her of her daughter. The friend who lost her daughter does some kind of a volunteer project on her daughters birthday every year. One year she went to the nicu at the local childrens hospital and rocked and cood to babies. Another year She went to a women's shelter and watched children so that the mothers could have a few minutes to themselves. Every year it is something different. After she does the service she writes a letter to her daughter telling her what she did to remember her and that she did it for her. This has made her birthday much easier to handle.
My mother-in-law passed away 2 years ago and one of her nieces was unable to attend because she was in the hospital so we taped the whole service and put it on a DVD for her. That way she could be there and participate.
When my mother passed away one of her sisters was unable to go to the funeral because she was on active duty and couldn't get stateside. So what she did was ask everyone for pictures of my mom throughout her life and she put together a really nice DVD with pictures and music showing her life. It was a wonderfulway to participate.
Is that something you could do? Collect pictures and put on DVD with you playing a coupke of her favorite songs on the harmonica? Then that could be played at the funeral. Just a thought.
It is never easy when a loved one passes, but it does get easier as time goes on.
What really helps me with my mom is remembering that I WILL see her again in the next life. Just as you WILL so your beloved grandmother and grandfather again. And the great thing about that is that you all will be well, happy and painfree at that time!
I will keep you and your family in my prayers.
How are you I am wondering this early in the morning....I also know what guilt can be had when we cant do what we use to travel and all...and most of our loved ones wouldn't want us to feel bad.They also know we love them without saying it but that its nice to hear.Our bodies do the best they can but our heart reaches surpasses all......I have a similar issue, it makes me sad and angry that others don't understand, comprehend what it takes to do things.Thinking of you....jj
I don't know what to say except I will certainly keep you in my prayers. Praying for peace in your heart, soul and body.
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