morgan617 Posted March 15, 2007 Report Share Posted March 15, 2007 Sweet Melissa, you are in my thoughts and prayers.....No words of wisdom and encouragement here, sorry.....sometimes there just are no words.....when the focus of our life is clothes or pj's and that's the best people can come up with to talk about, there's not much one can say to ease the pain....physical or emotional.....love you baby girl.... Quote Link to comment Share on other sites More sharing options...
Poohbear Posted March 15, 2007 Report Share Posted March 15, 2007 Howdy Sunfish!I can only imagine how weary you are of feeding off the bottom of the ocean. No wonder your tummy hurts!!Seriously though, as I've said before...I struggle to find words that don't sound trite and that help ease your burden in some way. You are in my thoughts and prayers and heart all the time though.Hey... you'll probably appreciate this story..... a friend and I were talking earlier this week about God and various stories in the bible and people on earth etc. I told my friend I need a T-shirt that says something like, "Job's friends were miserable comforters until they learned to shut their mouths and just sit with him SO....Keep your mouth shut and sit down" (this is not meant to offend anyone...we were just talking about how people mean well but don't know what to say and often make you feel worse). Sometimes there are no words. Reminds me of Forest Gump when the girl goes back to the house she was abused by her father in. In her anger she's throwing rocks and then falls to the ground in tears and I think Forest Gump says, "Sometimes, there just aren't enough rocks"If you need me to send you some new PJ's I will and I'll include a note that says you are to wear them as long as you need to!I recently met a new Dr and we were discussing my ADL's and what I can/can't do. She said the one thing that stuck with her and helped her understand my limitations was when I said I can't even do all my ADL's on a daily basis....that I make choices like, "Do I shower today or fix lunch" because I don't have the energy or stamina to do both. I'm sorry that on top of all of this you aren't getting timely responses from all your Dr's!! Quote Link to comment Share on other sites More sharing options...
yogini Posted March 15, 2007 Report Share Posted March 15, 2007 Sunfish, I hope you are able to resolve your stomach pain. Glad you've been able to stay out of the hospital, at least. And Poohbear, good to see you posting again! Quote Link to comment Share on other sites More sharing options...
lalalisa Posted March 15, 2007 Report Share Posted March 15, 2007 Melissa,Thanks so much for the update. I will definitely be praying for you. You are such a great example of perseverance to us all.Please take care,Lisa Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted March 15, 2007 Report Share Posted March 15, 2007 Melissa--i'm relieved to see your name pop up-- even though i know it doesn't mean things are ok. things sound pretty much as far from ok as they can get, aside from you still being home. i remember feeling the same association with being treated like a child when people would say things like "it's so great, kristen got a shower today!" or something like that. i would get so frustrated because even though i knew it was a huge accomplishment, i wanted to have accomplishments that didn't involve basic movement and hygiene. I can't fathom how weary and frustrated you must feel with this setback of pain. It must be agonizing not to have a doctor guiding this or to have reliable prescriptions showing up on time. I'm thinking of you often.love and hugs,Kristen Quote Link to comment Share on other sites More sharing options...
pat57 Posted March 15, 2007 Author Report Share Posted March 15, 2007 what do you think about a dictaphone? Quote Link to comment Share on other sites More sharing options...
corina Posted March 16, 2007 Report Share Posted March 16, 2007 glad to hear from you melissa. i wanted to let you know that i can fully understand that you would want to have more depth in your life than you're having nowadays.thinking of you,corina Quote Link to comment Share on other sites More sharing options...
StaceyYount Posted March 19, 2007 Report Share Posted March 19, 2007 MelissaI am so sorry this is still such a struggle and it infuriates me that your doctor is not calling back and that your pharmacy is not doing its job and oooh if I could but take it all a way. I am sending you many hugsAnd I soo know how you feel how frustrating and just sooo annoying really when people say ooh you got dressed today when they probably don't reallly realize what a struggle that was and that like you said you are not 2. My gran always says "I am soooo proud of you!" It is sooo hard to feel like someone when everyday is a struggle just to do what most people do without even thinking. I just wanted to say I hear you and sooo understand!Vent away and know we are here thinking of you and sending you strength! Quote Link to comment Share on other sites More sharing options...
Sunfish Posted March 19, 2007 Report Share Posted March 19, 2007 thanks all. ends up that i had a kidney infection. i never can "catch" UTIs/bladder infections b/c of impaired bladder sensation/function but usually i get more classic kidney pain. obviously this time around the pain was referred so that it felt more abdominal; since i already/always have GI discomfort no one thought otherwise. my home nurse did a urine test "just in case" and ends up i have/had two bugs. thank goodness we caught it before it spread further, but i'm thankfully in a lot less pain which is a huge relief. it also ends up that my doctor never even got the messages...not even the one from my nurse. ggggggggggrrrrrrrrrrr. but at least it means my doctor wasn't dismissing me. i have an easier time being angry at the office than at her. and she pretty much reprimanded me for not just calling her at home (she's also a friend & neighbor, but i always worry about being a bother). she & i were both relieved though that my pain had an "answer" as opposed to many of my ongoing issues that do not. pat - i don't mean to dismiss your suggestions, but when i'm struggling to be able to physically get through a day and can hardly take care of the necessary medical tasks a dictaphone wouldn't really be of any help. i have a mini-recorder from years of musical ventures but it still takes time, energy, & concentration that i don't always have. if i had the physical or emotional energy i would be journaling in some way; right now it just can't be the priority though. in terms of talking (vs. writing) there's also the privacy issue as there are people in & out of my room constantly so that uninterrupted time with any sort of regularity is a luxury i don't (and can't) have right now. melissa Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 19, 2007 Report Share Posted March 19, 2007 I am thinking of you Melissa. I am sorry you have been in such pain. Katherine Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 19, 2007 Report Share Posted March 19, 2007 Oh Melissa,I'd throw rocks with you (or for you!) if I were there. YOU contribute so much here, and have much to teach us all. I'm so appreciative. Big Hugs-Julie Quote Link to comment Share on other sites More sharing options...
pat57 Posted March 19, 2007 Author Report Share Posted March 19, 2007 oh I'm so glad you found that problem and your doctor remains attentive. And don't worry about hurting my feelings. Sweet of you, but I appreciate the clear reply. You are pretty succinct which is another reason I was urgeing you to journal. You write well.But you do excatly what you deem to be in your best interest!!~~~(((((((sunfish)))))))) Quote Link to comment Share on other sites More sharing options...
goldicedance Posted March 20, 2007 Report Share Posted March 20, 2007 Melissa...That's terrible that you are still waiting to hear about SSDI. Have you written your Congressmen?Just a hint as that may trigger a faster decision.Lois Quote Link to comment Share on other sites More sharing options...
Sunfish Posted March 20, 2007 Report Share Posted March 20, 2007 yeppers lois -we've written & spoken with our local congresswoman...:-)melissa Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted March 20, 2007 Report Share Posted March 20, 2007 MelissaHaven't been here for a few days and missed this post.Thinking of you and sending you patience and healing energy to do the basics.I am glad you figure out the pain issue.S Quote Link to comment Share on other sites More sharing options...
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