I just had to have somewhere to speak..I'm sorry

[tinac]

Thank you all for so much encouragement and advice! I think its what I needed. I have a bit of good news to share in this otherwise dreary story...we found this out yesterday!

update...Mri results on my mother...those of you who know whats going on and are waiting and praying need to hear. The dr. was just as shocked as us with the news. He hoped for some improvement but because of how bad it was and her state of health feared the worst. ...Uh....the tumor has shrunk...80 percent!!! OMG... none of us dared to even hope for something like that! Her decreased state is because of brain swelling due to harsh radiation. This means we continue the fight!! In the immortal words of Charlie Sheen...WINNING! lol....Thank you all for the continued prayers!

Because of my flare up I haven't gotten to be with her in the last few days but am getting the updates via my daughters. I took your advice so instead of just wallowing in my torture, I went back to the dr. He gave me a an additional steroid bolis . I now have enough steroids coursing thru my veins to choke a horse....If I come across one I JUST MIGHT DO IT! He also gave me adavan which is new to me. I took it along with my ambien but it seems to have the opposite effect. Its 4 in the morning and Im awake. Still feel to bad to get up and be productive but it did calm me a bit. Maybe tomorrow will be better with that med added.

I wish I knew how to add a pic of my sweet mother to the post because you would just want to hug her and see who you are praying for!

Thanks again for the prayers and well wishes..I know it lifts me up as much as her!

I hope to repay the favor some day with a story of gladness and triumph!!

Love
tina

[MINOP]

Dearest Tina

I am truly sorry to hear all that has happened to you.

Grief can be an emotional rollercoaster, with unpredictable highs,lows, and
setbacks. Everyone grieves differently. Feelings of guilt, anger, despair and
fear are common. A grieving person may yell to the heavens, asking God
why is this happening? Lashing out at loved ones, or crying for hours on end.

These are common expressions of pain you are feeling as you grieve for not only your brother and mom but for yourself as well.

Perhaps hospice care isn't available in your area but it is an option you may want to consider. Hospice care can be either in the home, hospital or place
of choice.

I will keep you in my prayers, praying that you will find peace while going through this difficult journey.

As far as the bills, contact a social worker at the hospital and find out if
they can assist the family with this burden.

God Bless you and your loving family.

MinOP
msworld

[tinac]

Thank you Minop,
I think I have been thru all those emotions. It dosent help that I have to pass Marks apartment on the way to the nursing home. My sweet nieces cleaned out his house to save me the work however I needed to do that. They didn't know and were trying to help but I spent so much time there with him, planning, talking and I would clean for him because of his disability. I wanted to walk thru and feel him. He liked his bed made just right cause of the missing leg and said I was the only who did it properly. I wanted to feed his recue fish once more(gold fish saved from being bait at the local bait store). He loved and named them John boy, Jim bob, Jason and ben Walton(lol) His granddaughter took them home along with his three legged cat(which I thought was ironic since he was an amputee himself).

He loved to cook and I wanted to make sure his kitchen was in perfect order and find someone who needed and would appreciate his equipment to give it to. There are many other things but my family didn't ask me, they just wanted to protect me from the pain. It may sound like I resent that but I swear that's not what I feel. I love them for their love, just wish it had gone another way.

It will probably feel better when someone else moves in there. maybe some kids that will leave their toys in the front yard. It may be while though seeing as Marks best friend can be seen sitting in his driveway late at night many nights. My other daughter lives near there and goes to comfort him and send him home when she can. I cant believe its been like 26 days now. Seems like yesterday. Just the other day my husband had to change clothes in town for a meeting..he said..babe, Ill just take my clothes with me and run over to Mar......then just teared up, lowered his head and said Im so sorry.

I know its still early and we will get thru this. I also know nothing will help but time. Writing it helps me. I don't know if you guys have a code word such as ALERT to save each other from newbee posts like mine but that would be perfect and the letters A L E R T "alert,long,emotional,rambling,thoughts" would certainly fit!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Temagami]

So sorry that you are being inundated with loss and your own health setback. You may find support at ACOR.org regarding your mom. On top of the loss of Mark, you are having to postpone the grieving in order to cope with the rest. Your daughter would not have waited for an ambulance even if you had told her to once she had seen her uncle. Sounds like you have raised resilient children, please don´t beat yourself up with the fact that she found him.

Keep venting/expressing as it does no good to hold it in. Tears are healing. Eastern cultures believe that the lungs are the organ of grief- focus on taking full breaths.

Hugs,
Temagami

[tinac]

You are right about my daughter. She would have done anything she could. I'm proud of her and all my children thru this time. Just after the moment she told me the news she said...mom..are you alone? I was because I sent my husband to be with her..lol. Thru her tears I could hear her saying dad go home moms alone...I was saying..Phillip stay with Leslie. Phillip had the level head. Leslies wonderful husband was there. Phillip said take care of my daughter, Im going to my wife. Even days later when my grown nieces, nephew and I were trying to get the plans made I kept trying to make it as easy on them as possible. The problem was they were doing the same. I have heard at times like this there is often discord and even anger to the point of family breakups. This was so the opposite. photo tributes, music, pall bearers, plot location etc.. we looked thru photos together and laughed and cried. we put them all, anyone that meant something to anyone. I loved hearing and seeing what was special about Mark to each and every one. It was like learning something new about him even after death. The kids did not know my brother and I shared a love for Creedence Clear water revival. The song "as long as I can see the light" in particular. They love it now. Look it up...its great! let me know if you like it?

[AnnaMae7]

Tina,

Wow...I was so touched by your story. First thing I am so sorry for the loss of your brother Mark, my Condolences to you and your family. Second thing I am so sorry to read about your Mom and thrilled to see the news that the tumor has shrank so much!

I feel that your truly blessed with the family that you have, seems like you are all there for each other, and this ordeal is bringing you all that much closer. It never seems to amaze me on how much we can endure. We sure find out that we are stronger that what we believed we were.

Take time for yourself as needed.... You deserve it. As for you sending your daughter and the nieces and nephew packing up his things, don't dwell on it. Everything happens for a reason, maybe it would of just been way to much for you....can think of the "what if's or the I should of's", it will drive you crazy. Just rest as you have and get yourself where you need to be.

Thanks for sharing with us... it tore at my heart, but is already getting better for your mother. Things take time. You and your family are in my thoughts and prayers. Please keep us updated, and vent here anytime.

AnnaMae

[Mamabug]

Tina --

You thanked everyone, in one of your posts, for the encouragement and advice.

• I also want to encourage you, but, I have no platitudes. Just hang in there; continue to be grateful for the family support that you do have; take care of yourself.
• My advice is short, but, in reality, not always so simple: Try to reduce and manage your stress. You had no control over your mother's health, or your brother's death. But, retain control over those things that you can.
  • Choose carefully what you say yes to and what you say no to. Reduce your responsibilities; delegate tasks when possible -- even things like a phone call to make a counseling appointment, if that would be helpful. If family members are also struggling with "too much" right now, perhaps you have friends who ask "if there's anything I could do...". Take them up on it, and delegate something that you just do not have the motivation or energy to tackle by yourself.
  • Give yourself permission to let go of any guilt you feel.
  • Pamper yourself in simple ways, as much as you can. Be good to Tina.

~ Faith

[Krysalus]

BIG GIANT HUG

Hi Tina.

I read your post and followed the trail all the way through. I was teary reading your early ones. My condolences and you and your family remain in my thoughts and prayers.

I was happy to read about how well your mother is doing. That is truly remarkable.

Please take time for yourself. You can try to take care of everyone, but if you're not well yourself, you won't be able to take care of anyone. It's okay to take care of yourself.

Your family sounds truly wonderful and supportive of each other and that is its own blessing.

Sometimes we all don't want to share things that others around us just don't understand or if we want to spare their feelings. I am so happy you came here and found this site. Please come vent, laugh, cry, scream, tell a joke or share a smile or a tear here. I have found these message boards to be a lifeline when no one physically around me 'gets it' or truly wants to take the time to listen. I've found the people here to be terrific, understanding, insightful, helpful and supportive of every issue.

[Wordsgood]

Oh Tina, words are simply not enough!

I'm very glad you found this forum, but beyond sad about why.

Please, please, please... DO get help as soon as you are able. What you have and are still dealing with is beyond what anyone could or should, have to cope with. Please know that we are here and we do care. You HAVE been heard and our hearts go out to you.

I will be keeping you and your family in my thoughts. Sending you massive hugs now! Gentle, but huge ones!

[Cat Mom]

I hope to repay the favor some day with a story of gladness and triumph!!

Love
tina

You just did!! You have a wonderful family and a beautiful heart. Thank you for sharing a few personal memories of your brother and as well, the unexpected good news about your Mom's tumor shrinking. Please keep us updated. You are all in my prayers.
Jen

[CaroleL]

Tina --

You thanked everyone, in one of your posts, for the encouragement and advice.

• I also want to encourage you, but, I have no platitudes. Just hang in there; continue to be grateful for the family support that you do have; take care of yourself.
• My advice is short, but, in reality, not always so simple: Try to reduce and manage your stress. You had no control over your mother's health, or your brother's death. But, retain control over those things that you can.
  • Choose carefully what you say yes to and what you say no to. Reduce your responsibilities; delegate tasks when possible -- even things like a phone call to make a counseling appointment, if that would be helpful. If family members are also struggling with "too much" right now, perhaps you have friends who ask "if there's anything I could do...". Take them up on it, and delegate something that you just do not have the motivation or energy to tackle by yourself.
  • Give yourself permission to let go of any guilt you feel.
  • Pamper yourself in simple ways, as much as you can. Be good to Tina.

~ Faith

Mamabug, what a wonderful message you wrote! I think it's fitting for all of us. It did me a world of good just reading it. If you don't mind, I'll be putting this on my fridge, mirror, bathroom. It will be a constant reminder!

Thank you!!!

[Ms Lada]

I understand, as so many on this forum do, the need to reach out to people you don't know but have shared expereinces and challenges with instead of your friends and family.

You were heard and understood.

I hope that helps you somewhat get through your hard times. take care as best you can, and remember it is okay to let others help you. It usually helps them to in some way.
K

[Mamabug]

Carole --
I'm so glad that what I posted was helpful.

Over the past two years, I have worked diligently at improving my health: changing my diet, adding exercise, losing a significant amount of weight, etc.

And, one additional "health strategy" for me has been stress management. It makes a huge difference in reducing my risk for MS flares.

~ Faith

Mamabug, what a wonderful message you wrote! I think it's fitting for all of us. It did me a world of good just reading it. If you don't mind, I'll be putting this on my fridge, mirror, bathroom. It will be a constant reminder!

Thank you!!!

[cindyw224]

Tina,

I am so very sorry for all you are dealing with. I'm sending you a big hug.

Cindy

[shaden65]

God bless you, tinac

this is a great place to share~~~thoughts, feelings, experiences, wishes, desires.....lay it on us!!!