Hi everybody...what follows is straight from my heart
I am the 8th of 10 children. My eldest sibling & brother, Tim, went thru unspeakable suffering for many months and finally lost his battle with glioblastoma multiforme (brain cancer) on 10/07/08.
For the last couple of months until his death, I visited him every day. His wife provided tender, loving care to him and would have continued to do so for many years to come, even though he was bedridden, incontinent, and barely able to communicate, if only he would have lived longer.
To witness my 76 year-old papa's pain as he watched his oldest child dying was almost unbearable. Even though I was prepared for his death, it has affected me in ways I couldn't anticipate. I am heartbroken because life will never be quite as sweet...a piece of my family has gone away forever.
My RA is getting very, very ugly...and I think we all know how crappy that can be. I've been unable to work since 10/16/08 and I'm not sure that I'll be able to resume working.
So, to put it bluntly, I'm experiencing physical & emotional pain on a scale I wouldn't wish on anyone.
We're all on a rheumatoid arthritis forum, so we all know pain, don't we? Even though it hasn't been proven, I know from my own experience that STRESS worsens RA & other autoimmune conditions.
For the sake of your health and that of others...please, do whatever is in your power to avoid causing stress & pain to others. Emotions run high when talking about things that are very important to us, and when we get caught up in the "heat of the moment," we can say things that cause pain to others, though it may not be our intent to do so.
Words do have the power to hurt, but only if you allow them to. Not everyone is able to let words "roll off"...some people are more "tender" than others and words can penetrate the heart like a sword.
Much love to all,
Ezzi
Ezzi- what a beautiful person you are!
Sorry you have been through so much recently- hope the future is brighter.
(edited to add the above)
wanttobeRAfree2008-10-28 07:28:12I am so very sorry for the loss of your brother. I hope you will find some peace during this difficult time. My father in law passed away July 31 and the stress and my RA is awful, I can only imagine how it would double if it was one of my brother's. I hope you find some relief and try to take it as easy as you can. Keep in touch
Reegie
I agree with WTBRAF, you are a beautiful person.
I am terribly sorry for your loss and I too hope you find relief from your RA soon. I agree about stress being a factor for RA flares. I always flare from increased stress.
Thanks for the kind words...
I'm as guilty as the next person of lashing out in anger (believe me!!), and it's only recently that I've realized that my anger doesn't affect the person I was angry at...my anger makes things worse for me, and only gives power to an emotion that ends up making me feel awful...so, I'm making a real effort to change in that respect.
Squelching my anger doesn't dampen my passion when I speak out on issues that matter to me...it only changes the WAY that I speak out...anger and passion are 2 VERY different animals, aren't they? I've learned that I get my point across much more effectively by being mindful of the thoughts & POV of others, rather than being ferocious all the time.
Anger & hatred are so draining, and I thing we're probably drained enough due to RA.
Leslie (Ezzi)
sorry for your losses, ezzi... this is a wonderful thought you posted..
I hope some take heed... I know I will.
Good suggestion to all. THanks for the post. Prayers for you.I agree totally with you. Thanks for the thoughts.........Thanks for the post. I am sorry to hear of your loss and will keep you in my thoughts and prayers. Hiking_galLeslie,
It's hard to lose a loved one - prayers for you and your family. I appreciate your post and maybe it will be a good reminder that sometimes it's a good idea to pause before posting.
I am so sorry to read of your loss. It's no doubt a comfort to you that you spent so much time with him, and to have seen how his devoted wife cared for him. I hope it comforts you to know that he knew he was loved and valued by his little sister right up to the end of his life here. I will be praying for your family, I know how hard it is to lose someone you love, to long to talk to that person for just a minute longer. I'm glad he had you for a sister.Dear Leslie,
My sincere sympathy to you. I have lost both my mother and best male friend to glioblastoma, one year to the day apart so I really do feel your pain.
Keep up that magnificient attitude you have and know that your post has had an impact on some of us.
Ann
Leslie - I am very sorry for your loss, and feel for your Father. It has to be hard on a parent to lose a child, there is something so unfair about it. And your words are very wise. Take care of yourself, this first year without a loved one is very hard. Rest and get your strength back. CathyMy dear Ezzi, Please accept my deepest sympathy for the loss of your dear brother. My own older brother passed away 2 years ago, following a 4 year battle with liver cancer, and I still feel him with me every day.
It's good that you were able to spend time with him. That time is so precious. Your father sounds like he is going through unbelievable grief. We are not supposed to outlive our children.
My thoughts and prayers are with you and your family. Be comforted by your friends and family and the knowledge that your brother is at rest in the hand of God.
Much love, Nini
I believe we "FRAME" our world with our words.
Peace,
InflamedOnline
Thank you all for the comfort you've given me...
When I was diagnosed, I asked "why?" Not long after, someone very wise told me that I should see RA as an opportunity to take stock of my life; I did so, and was finally able to see what should take priority in life...the love of family & friends.
Pain, physical & emotional, has made me a bit wiser, so rather than condemning pain, I do my best to "welcome" it as a chance to slow down & "smell the flowers."
Peace & love to all,
Leslie
Thank you for your wonderful post!!!!Still like this post. Thanks so much.ezziboo-
Great post. Always applies.
I'm very sorry for your loss Ezzi.Me too!!!!I'm so sorry for your loss. Your outlook is much like mine. I've embraced RA. It doesn't mean that I've given up like some on the forum have said. It just means that I've come to an understanding and have learned many things about myself on this journey. Lindy
Hi Ezzi, just wanted to say that losing a loved one is life-changing and along with this disease the stress is immense, so take good care of yourself, let yourself grieve, I lost my Mother almost 2 years ago, I will never get over it, she was the most important person in my life. But it does get easier and the sad days are fewer, keep your chin up and thanks for a great post. Hugs Janie.Hi Ezzi.
Your post brought tears to my eyes, what little tears i still produce, that is.:)
I can relate to what you had to say on many levels and totally agree with you.
My condolences to you and your family. Many blessings.
Good luck with your new treatment coming up in a couple of days. take care.
Wow you've had a really tough time and it seems you have grown in wisdom through it. Your message is beautiful and heartfelt. Thank you for speaking out.
Thanks to all of you for the kind words
I think I've reached the "end of the tunnel" of the grieving process...I'm able to look at pictures of Tim and smile instead of crying.
Job stress (I'm a welfare case manager in Louisiana...nuff said), 2 back-to-back hurricanes (Ike & Gustav...no damage, just 5 days without power during Ike), Tim's torturous decline, my dad's heart scare, and realizing just how serious RA is and how it would affect my life .........ALL of these things contributed to this rotten RA flare and the depression that came along with it.
I had a whole-body cortisone shot last Wednesday, resumed MTX injections (liver back to normal...for now
Four months of Humira didn't do a thing for me, so I'll begin Remicade within the next week.
I'd love to hear from anyone who has been helped by Remicade!
Happy Thanksgiving...gobble gobble!!
Welcome back Ezzie- haven't seen you posting for a while. I'm so glad you are coming to terms with things. I'm glad the pain is being replaced by happy memories!
Best of luck using Remicade!
Hope you enjoy your Thanksgiving!
I am so sorry for your loss and for what you are dealing with when it comes to RA.
Thank you for this beautiful message. Good Luck with Remicade!!
Yes, good luck to you.Hi Ezz, I was on Remicade for a about 18 months. Had to come off it 3 times last summer for 3 different surgeries. I wasn't able to achieve the same level of relief again and I was up to 800 mg. every 5 weeks or so. We stopped Remicade and let my system rest then I restarted Humira with an increase in MXT dose and it worked like a charm. I'm now in clinical remission. Probably if I hadn't had to stop Remicade for most of the summer I would still be on it. It wasn't that it failed there was just too much interference in the process. Hope that it works well for you. There are several people on the forum that are doing well on Remicade. LindyLindy, thank you so much for the info...I'll have my first Remicade infusion on 12/10/08.
I'm so happy to hear that you're in clinical remission!ezzi-
How are you doing?
ezzi-
How are you doing?
ezzibou-
Where are you?
did you PM her Jan?babs-
No, I didn't. She is probably on vacation or something.
Ezzie- I can only imagine your grief. I have lost people I loved deeply but losing one of my siblings would be devastating. They have been so there for me since RA. I had no idea how my family would rally if I became ill. Each and every one of them have been there for me way beyond one should expect of them. My parents have been gone many years so our family, siblings, are very close. I pray I never experience losing one of my brothers. My deepest sympathies are with you. RA is a devastating disease and the people that understand this best are others that suffer with RA. We need to be the most understanding, caring, kind and supportive to each other. None of us need hurt feelings while coping with RA. Your words and encouragement are very kind and I am so glad to read all the other supportive replies you received. From a kindred spirit - Roxanne
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