I still need to talk. Sorry. A lot of stuff has just come to a head, thats all. Yes, more sleep will help my body but I'm still going to feel the same as I do now.
Me and my body seem to be two different things to me anymore. It's not just, black & white anymore, there are grays too.
And also yes, when someone is either going through something bad or something that they've learned about their health that really isn't good news and you know your prognosis, this is how you can tell who your friends are and who aren't.
Yes, being told some not nice stuff from all of your doctors does change a persons life and how they look at things. I've noticed that I stand up for myself more. And, so what if I've changed, given the exact same information as I got, wouldn't you? And how? There are so many things that I hold inside me and not tell anyone. It's on a 'need to know basis.' And you know, what I can't still understand is I'm held responcible for my own illnesess! What I mean; I can feel great one minute and then the next minute I can go right into feeling pretty bad. And yes, it's that fast. And when you try to explain it, not too many people get it, or understand. They automatically think that I've changed. Yes and no. Yes, I would love to do this and that but, no, my body won't let me. How hard is that to understand?
I want to get out of the house a lot more then I do but, when I'm not able to, I'm not able to. It's that simple. This has taken my body and morfed it into one that is harder to read then my old body was.
This is no fun and it's not fun when I have to tell someone, "No, I'm sorry, I can't." It has nothing to do with any one person, it's just my body speaking to me. And I 'have' to listen.
Aren't you allowed to grieve? Grieve my losses. And everyone is different when they do grieve. And how long it just might take.
I thought I could get the diagnosis and then "just" be relieved knowing. Well, you don't know how you will react until it happens. Thats why I don't like to hear someone say, "I would have done this...or that!" Really? And you know this for sure? I don't think so. Not if the shoe was on the other foot.
And I'm just tierd of feeling like I have to have a smile on my face all the time. And be in this supper great mood all the time. Well, this is life right here. I can't do those things. Sorry. I can't walk on water.
The only thing that I can fight, is doing my best to prove him wrong on my prognosis. And 'thats' what I'm going to try and do. So far, I do know that I am a month ahead of him. Yay!
And, in my opinion, getting hurt because I'm not able to do something thats beyond my control, really hurts me!
You know, all of this thats going on, I'm doing the best that I can to still be me.
And I don't know how many times I've writen in an entry that I'll do my best to get to your journal. Yes, I know it's been awhile since I've been to your journal. But, I've asked for you to bare with me, didn't I? I can only do so much. Do you read what I write? If you needed me to talk to, then just ask me, I have a good listening ear. Just understand what I say. If not, oh well then.
And it also seems that when I write like I am now, where are my friends? They read and don't comment and back away.
I'm hurting.
I'm grieving.
When do people need their friends the most?
And all I'm doing right now is hurting AND grieving. Is that a bad thing? It has just all seem to hit me all at once. Not a good thing. From March until now, I've had a lot of thinking time and a lot of time to watch and listen to other people. And get emails about how I've changed. Ask yourself....wouldn't you? And how I've rubbed someones face in something that I wrote. No....thats just the way YOU took it. And that I've writen something that wasn't politically correct! So what! I can't spell either! Whip me out an email for that one too!
And it just all comes back to, "Try wearing my shoes and see how you feel."
26 comments:
Awwwwww Lisa I am so sorry you have so much going on right now, you are always in my thoughts, do'nt worry about the journals, just get to them whenever you can, there is a card coming for you, Love and Hugs Lisa
believe me sleep would help you and added with chiropractor stopping all drs and meds and eating nutritionally well (not what htey bring you ) with herbs and such. I KNOW I HAVE SEEN it. I have a friend who is in year 22 going on 23 of HIV with aids now .......... she has way more things than you can list going on symptoms such as yours............. and much much more you have no idea what aids does to you. so about a year and half ago she stopped depending on drs and being at thier beck and call............. she went holistic and all those meds took a few months six or seven she said to get out of her system but she said she is sleeping better she feels better than ever before. YES she still has aids but she is better way better. You can not let these drs that we have now days use you as the pharmcutical companies test rat!!!!!! you are worth more than that. GET UP get proactive and do your own thing dont let them dr you THEY OBVIOUSLY DO NOT Care!!!!!! find you some good holistic drs and go from there!!!!!! you can do most of the research online to find what you need. You are home you have the time....... take control of your life!!!!!!! FOR YOUR Lifes sake and your kids and grand kids. stephs fibro is almost non existant and her in ablitly to walk and function in daily life that has changed so greatly. you would feel so much better if you got proper sleep. proper care.
Hi Lisa,
Maybe I missed some news. I was not online yesterday and maybe the day before. I did see that your arm was still hurting but I don't know the outcome of you thrombophlebitis is that is spelled correctly(?). And I don't understand what you mean by prognosis. Do you have a new prognosis on your MS? What's going on? I'm confused by this writing. It doesn't really say what's going on.
In any event, I certainly hope your arm is healing, the other bruises on your body (did you find out if they are part of MS),
I do hope you will be feeling better enough to have a good Christmas.
hugs, Arlene
Lisa, I am sorry that you are feeling so down. I think I have told you before that I go through something like you are experiencing Although, mine happens to be emotional. Panic attacks, and depression, moodiness, and a bad temper (that just developed recently). I think everyone has their own pains. My point is Lisa, you are not alone when you are miserable. I have been reading your journal for a while now, and just about every entry lol, I see that you are suffering and I try to be as supportive as I can. Life is going to get us down, but we have to do the best we can to survive. Unfortunatley, it's the only life we have....You are doing the right thing by writing your feelings somewhere! I will tell you, that helps me more than anything. For everything really personal, I have a private journal. You may want to consider that if you don't have one already. You can really let it out there, and NO ONE can nit pick at what you say. I think the reason you get so many e-mails with people correcting you and so forth is because of the amount of readers that you have. The more that reads your journal, the more likely a butthole is going to pop up every now and then lol. Don't worry about what they have to say! Keep your head up! -Missy
Lisa honey,
What you can't walk on water?? I AM KIDDING DEAR.
I don't get why it's so hard for people to get it...I think I needed to hear it ONCE to undestand.
PLEASE people in J_LAND no hate male...I get how Lisa is feeling.
I haven't slept well in 2 weeks.
I had to take today off because I am afraid to drive. & try to catch up with house work...laundry ect...& son would like tree up...
BUT do you think EX father of son would back off.??..doesn't he get that when he hurts me he hurt's son?? He's the example of what a man should be for son...heaven help me...
DUH. He pulled out of the parking lot SAT and yelled to me "that he was going to call the cops on me if I ever call him." WELL, now that was smooth, son was standing there and was worried that DAD is going to call the police on us! What a world. Not to mention he was so close he could have run son down.
Lisa I hope you have a good day.
Love,
Donna
If I've said this once I've siad it a thousand times to other people-"You can't please everyone ' so ya got to please YOURSELF.
To hell with what people 'think' you should act like,look like,talk like,feel like;
Hell they are having a hard enough time livin their own life-don't let them think for a minute they are gonna tell YOU how to live yours....Hey-just say-if ya don't like me the way I am-whether it be good or bad-just 'KISS MY GRITS' & have a nice day ya'll
~c~
((((((((((((((((((((LISA)))))))))))))))))))))))I am so sorry you are hurting,no one knows,like you do.You are a good and special person.I just love you so much.
Lisa,
It's you that's got to deal with it, and someone giving their ninepence' worth on how they would deal with it or make suggestions is basically guilty of empty talk. I've done it myself to you. You write what you need to write about, and you're excused from commenting if you're not up to it. Some people are so inconsiderate, it's breathtaking. When you lose a faculty, whether it be muscular control or something like sight or hearing, you will grieve. We're here for you. Period.
Wow, this is a good entry. Are there people giving you a hard time?? Sometimes I do wish the shoe was on the other foot for some people so they can see. Yes, you do "DO" some things at times, and then you have to pay for it the next day because your body did too much. You are still the same person to me, just more 'disabled' on what you can do. You still have the same personality. lol.
Love ya
I am sorry you are hurting. I hope you get some relief from you pain. Have you ever thought of maybe going to get a professional massage to get toxins out of body and help with your pain. I know a hot whirpool would help you tremdously, and your diet? Do you eat much salt or sugar? try to eat and drink healthy foods only. It is amazing the chemicals and stuff people are injesting and how it not only affects body and mind.
Bell well, and be happy.
God Bless.
(((((((((((((Lisa)))))))))))))))))
Deal with you and screw what everyone else thinks!!!
Well lisa sorry I havn't been by I have been feeling a little down myself the last few days,which I do not always say so i my journal..Some blogs I have got to others not.So I do undertand when you cannot get there being you are much iller than myself.Don't let it worry you.I work my way round when I feel this way,when I can, and it's not everyday I am afraid.Takes some catching up when you miss a few times.I hope you have a much better week this week. Prayers
continueing.Take Care God Bless Kath
astoriasand http://journals.aol.co.uk/astoriasand/MYSIMPLERHYMES
I am so sorry that you feel this way. Yes you have a right to grieve. Just please don't let the sadness consume you.
Kelli
http://journals.aol.com/kamdghwmw/noonmom
Awww lisa ((((((((((((((((Hugs))))))))))))))))))) I'm here for you hun xx Please don't feel this way ~ I know it's easier said than done
Jenny
Lisa the only one you have to please is yourself, don't worry what others say or think dear, you are letting it all get to you and that in itself can cause you to have more pain and discomfort health wise. Keep a positive attitude, use my personal motto "No One Or Nothing Will Get Me Down", it works for me and hopefully for you also. Know health wise you are going through many ups and downs, but this constant stress on your system can't be helping you. Talk with your nurse and see if she can get you in to be checked for depression and help with your getting something that can help you with that. How you mentally feel can make the world of difference in how you handle each day. Take care....Arlene (AJ)
I'm here for you. Consider me a friend. I know it is difficult for you. You don't have to be in a super mood always. Just do your best and take each day as it comes. Take care.
Phil
It's good that you are getting your feelings out. I know you are frustrated and have been. You can count me as one of your friends and I'll be here if you ever need me. Have a good evening. Luv ya!
Allison
I don't know how anyone can be considered responsible for his or her illnesses. Of course you're responsible for handling it in the manner you best can, but gosh, you don't control it. I haven't read journals in 4-5 days, so I have likely missed stuff. You are worthy. I'm sorry if some of your friends can't handle the changes in you. You can be polite when saying no, sure, but I'm sure that you are. Perhaps they are scared of it? Anyway, you do what you have to. God knows, and He loves you.
Hon, you don't have to apologize for needing to talk. Don't we all? Serious health problems turn one's life upside down. They change everything, from how we think, to how we feel. I may not stop by as often but I DO care about you, DO miss stopping by. Oh, and by the way. have I told you lately how proud of you I am for your courage..your spunk? NO? Well, I'm telling you now.
Big hugs, and much love too.
Barb- http://journals.aol.com/barbpinion/HEYLETSTALK
Lisa, I understand. I am so sorry things are hard for you. I haven't commented or written in your journal as i haven't had time to read anyone's journal. Dave had a knee replacement and is still recouperating. Things aren't going so easy as they do for some people. That's why I haven't written. I have thought of you, I have sent you email. I am here if you want to talk to me. Merry
I am glad you are getting this out. I am sure with all the changes and adjustments you have had to make you feel you might go mad at times, and none of us know exactly what another feels, especially one in the grip of a major disease that is having its way with them. I am just grateful you are still able to report back. It's like you are on a space journey to another planet and nobody else really knows who isn't along with you what you are experiencing, so keep on writing and recording. I am so happy to see you having happy moments with your family. I do remember when being very ill people would not believe I was that sick if I smiled at all! Ha I told my sister when she lost her pancreas don't go see a doctor and laugh he will never believe you are too disable dto work. Just like kind of somber. Remember how people are always deciding a suspect killed somebody if they don't act quite like they are grieving properly, and of course sometimes that's a clue, but sometimes it is not! So smile and laugh as much as you can, because I think that's better medicine than pills. Gerry
I've been dealing with Pop/death issues and haven't been around in few days. I don't usually read other peoples comments on the blogs I read. I read the entry and then comment if I'm going to so I'm not sure what's going on but it seems like somebody's giving you crap again! I don't think you've changed. It sounds to me like sometimes you feel good and sometimes you don't. What's everyone's DEAL??
And just so you know FOR SURE, I'm not upset that you haven't been by my journal lately. I know you'll stop around when you can. We all have our own shit to deal with. I've been spotty myself with journals. This month is turning out to be a real UP AND DOWN emotional time. But I knew it was coming.
Email me if you need anything, Darlin'. You're doin' a great job of standing your ground over there. I'm proud of you!
Love,
MJ
aaaawwww! baby I do understand your pain honey. I to have been depressed lately. I just worry about you all the time. Believe me when I say this,if I could take the all the pain you have to endure I would in a heart beat. So you could have your life back. I love you honey Mom
Lisa, Sometimes we just have to do what we have to do! If you want to talk my dear by all means TALK! LOL!!! I understand how you feel everyone does not understand those of us suffering with fibromyalgia, lupus, chronic fatigue, and so on and so on..... but I DO! Take care of yourself. Don't sweat the small BS! lol!!
Your fibro friend, FIBROLUPUSGRANDMA (DEEBA)
COME VISIT SOMETIMES http://360.yahoo.com/fibrolupusgrandma
I'm behind in reading as usual. Sorry about that. I don't have the same probs you do. Mine our different but I know I can only do so much myself physically. I have good and bad days. I don't get alot of sleep and it makes me physically ill. To hell what others think. And don't worry about getting around to my journals. I understand. That's why I just email ya sometimes. The news you got can be devastating and you have to deal with it your own way. No one I know can be happy all the time even people in good health! Keeping ya in my prayers hun.......Hugs, D
Haven't read all your blogs,only came across them by accident. I watched some vids, and looked at pictures. Not quite up to date with your health etc but from what I've read your in alot of pain and discomfort.mentally to,like you have to justify your emotions!!! Just wanted to say.......well said!- regarding the comments, above,you sound like quite a strong person who knows there own mind! Keep smiling, Lisa. xx x x xx x x xx x
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