March 2011


If you could go on vacation for the next month with an unlimited budget, where would you go?

Answer here

Ask me anything http://formspring.me/autoimmunelife

Being myself.

Ask me anything

I wish my child hadn’t died. I wish I had my child back.

I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me. I need to hear that my child was important to you also.

If I cry and get emotional when you talk about my child, I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears. You have talked about my child and you have allowed me to share my grief. I thank you for both.

Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I need you now more than ever.

I need diversions, so I do want to hear about you, but I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child; my favourite topic of the day.

I know that you think of and pray for me often. I also know that my child’s death pains you too. I wish you would let me know these things through a phone call, a card or note, or a real big hug.

I wish you wouldn’t expect my grief to be over. The months/years are traumatic for me, and the first ones are especially difficult, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.

I am working hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child and I will always grieve that my child is gone.

I wish you wouldn’t expect me “not to think about it” or “be happy”. Neither will happen for a very long time, so don’t frustrate yourself.

I don’t want to have a “pity party”, but I do wish you would let me grieve. I must hurt before I can heal.

I wish you understood how my life has shattered. I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am trying to be with you.

When I say, “I’m doing okay”, I wish you could understand that I don’t “feel” okay and that I struggle daily.

I wish you knew that all of the grief reactions I’m having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I’m quiet and withdrawn or irritable and cranky.

Your advice to “take it one day at a time” is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I’m doing good to handle an hour at a time.

Please excuse me if I seem rude, it’s certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

I wish you wouldn’t let my child die again by removing his pictures, artwork, or other remembrances from your home.

I wish very much that you could understand; understand my loss and my grief, my silence and my tears, my void and my pain. BUT I pray daily that you will never understand.

I will have emotional highs and lows, ups and downs. I wish that you wouldn’t think that if I have a good day my grief is over, or that if I have a bad day I need psychiatric counselling.

I wish you knew that the death of a child/sibling is different from other losses and must be viewed separately. It is the ultimate tragedy and I wish you wouldn’t compare it to other losses.

I wish you understood the physical reaction to grief. I may gain weight or lose weight, sleep all the time or not at all, develop a host of illnesses or be accident prone, all of which are related to my grief.

Our loved one’s birthday, the anniversary of the death and the holidays are terrible times for us. I wish you could tell us that you are thinking of them on these days. And if we get quiet and withdrawn, just know that we are thinking about them and don’t try to coerce us into being cheerful.

I wish you wouldn’t offer to take me out for a drink or to a party, this is just a temporary crutch and the only way I can get through this grief is to experience it.

I wish that you knew that grief changes people. I am not the same person I was before my loved one died and I never will be that person again. If you keep waiting for me to ‘get back to my old self’, you will stay frustrated. I am a new creature with new thoughts, dreams, aspirations, values and beliefs. Please try to get to know the new me – maybe you’ll still like me.

Author Unknown

I think the grossest part of my lupus flares is waking up in a puddle of sweat, no matter how dressed or undressed I am. I have the sweats constantly when I’m in this kind of a lupus flare, but they are the worst in my sleep….. So tired of this.
I was curled up to Johnny, apparently we spent the few hours we were both in bed cuddled the entire time, and woke up in a puddle, and it’s even more gross when you end up involving your SO in it, I’m sure Johnny did NOT like being covered in my sweat, though it’s far from the worst body fluid I’ve gotten on him…
YUCK!

  • 00:00 Tweets of the day wp.me/pnlI7-tb #
  • 05:49 "Satan wrote the Bible" – Interesting points… not sure I’d take it all that far, but there are a lot of good… tumblr.com/xkf1qxkg76 #
  • 07:47 Definitely… tumblr.com/xkf1qyfjqg #
  • 08:32 Seriously!RT @riotkat: This drives me crazy. Please stop telling my child its her whoha. Its a vagina. Or she can call it privates. #rant #
  • 08:42 @riotkat Definitely not just you…. it pisses me off! #
  • 09:26 Disgusting! I can’t believe someone would even try to get babies on that schedule! tumblr.com/xkf1qzf2de #
  • 10:31 This is rape culture! And it is so WRONG! An 11 y/o "asked for it"? Ridiculous! tumblr.com/xkf1r06kjd #
  • 10:32 This is rape culture! And it is so WRONG! An 11 y/o "asked for it"? Ridiculous! – I… I’m left speechless…….. tumblr.com/xkf1r075cl #
  • 11:37 Mmmmmm….. lunch (roast beef and swiss on sourdough, with salt and vinegar chips, and a raspberry ginger beer) (cont) tl.gd/989n62 #
  • 12:44 @sonjathegreat unfortunately I suspect their effect on fibro pain is the same as all chocolate/sweets/processed foods… bad. 😦 #
  • 13:01 Laptops make excellent heating pads for the belly while on my back…>.> #
  • 13:02 @sonjathegreat Well I think that’s a tiny bit better … but not much…. #

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  • 00:00 Tweets of the day wp.me/pnlI7-t4 #
  • 00:22 It’s been a little more than two months… wp.me/pnlI7-t5 #
  • 00:38 grief? wp.me/pnlI7-t9 #
  • 01:24 Right now is one of the times I hate not having tv/cable! I can’t seem to find any live streams for what’s happening right now! #
  • 01:27 Live video feed for aljazeera (in english) – Pause the top video, scroll down to the second, it’s live. tumblr.com/xkf1qj88y4 #
  • 01:27 @theineffabelle Thanks Lauren! #
  • 01:27 @SCVMommy Thanks! #
  • 01:28 Live streaming news from Japan tumblr.com/xkf1qj8i0r #
  • 01:29 @SpoonsAndRoses Mine’s not, thanks for letting me know…. I’m glad I finally got some suggestions of places to watch online. #
  • 01:33 @SpoonsAndRoses thanks for the info! #
  • 01:40 @SpoonsAndRoses amin? #
  • 01:51 @SpoonsAndRoses do you mean a mic? #
  • 01:51 @SpoonsAndRoses oh sorry,…. brain fog… yes I do. 🙂 #
  • 01:53 @SpoonsAndRoses my friend wrote it for the daughter she lost to SIDS, I reshared it for my Lily. #
  • 02:13 I hope my aunt’s family in Japan is ok…. #
  • 02:18 @SpoonsAndRoses are you wanting to copy it, or use my link? #
  • 02:20 RT @BBCNews: #Tsunami is higher than some Pacific islands and could go right over them #
  • 02:20 Indeed RT @UCTD_girl: @SpoonsAndRoses A reminder of how beautiful and devastating nature can be. #
  • 02:28 hoping my stepfamily in Japan (whom I’ve never met) and my friends in HI and around the Pacific Rim are and remain safe! #
  • 02:28 @SpoonsAndRoses Ok, go for it, thanks! #
  • 02:45 @SpoonsAndRoses what is your tumblr? #
  • 03:28 RT @BBCNews: #Japan authorities say at least 29 people have died in #earthquake and #tsunami: bbc.in/e29Rho #
  • 04:08 Just finished watching last night’s episode. bit.ly/3H3Yc3 (via @GetGlue) #TheDailyShowWithJonStewart #
  • 04:09 Watching last night’s episode… it has some awesome laughs!!! bit.ly/cOt2pf (via @GetGlue) @colbertreport #
  • 04:30 I am watching Bones bit.ly/aCrTAT (via @GetGlue) #Bones #
  • 05:22 It means so much to have Johnny so concerned about my online friends, and their kids… I can just say "so and (cont) tl.gd/97hq3d #
  • 05:22 I should clarify and say that he cares about the kids of those who have them. #
  • 05:23 RT @BBCNews: At least 40 people reported to have died after #earthquake in #Japan: bbc.in/e29Rho #
  • 06:48 RT @CNNLive: First signs of #tsunami have started in Waikiki Beach, #Hawaii. Live @KITV4 coverage: on.cnn.com/cnndcl2 #
  • 06:49 RT @BBCNews: As many as three hundred bodies have been found in Japanese city Sendai, says #Japan’s news agency Jiji: bbc.in/e29Rho #
  • 07:04 Can Patients Get Around the Exorbitant New Cost of a Pregnancy Drug? – This frustrates me so much, there… tumblr.com/xkf1ql1hnv #
  • 07:18 @bearawks Exactly! I’m going to have to be on it if we try again, due to PTL (x2) with Lily, lots of PTContrax, and Lily being preemie. 😦 #
  • 07:18 @bearawks Could help keep baby in to full term, which could help prevent another SIDS death, or death due to other causes.. ridiculous! #
  • 07:29 @bearawks too expensive and not putting myself plus another person through all the hormones andeverything #
  • 07:29 @bearawks I’d have to go through massive amounts of hormones and the other person would too, to get ready for the preg, than during the preg #
  • 07:29 @bearawks I’ve had a couple of people offer to be surrogates #
  • 07:35 @bearawks I’m not willing to do that to other women, or to force myself through the large amounts of hormones over a short amount of time. #
  • 07:35 @bearawks Doing the meds before the egg retrieval would be worse for my health than another pregnancy… #
  • 07:39 @bearawks thanks! Who did you lose? during a pregnancy or after? (if you don’t mind me asking of course….) #
  • 07:48 @bearawks I’ll listen to it later on for sure. 🙂 Right now Johnny and I are watching a show togehter. #
  • 09:09 I wish my kidneys and sides would stop aching. ::( #
  • 09:19 @PrincessLilla thanks for the correction, I was a bit confused lol! #

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