Thursday, October 12, 2006

Spilling the beans


                           Right now….it is 10:53, and I can’t sleep. I have sooo much on my mind right now. Way too much I would say! What a day this has turned out to be. It’s different how things come about when you least expect them to. Especially when you don’t have anything planned or even when you do! Things in my life right now seem to have made such a big turn…a sharp turn at that! I guess you could even say to the point to where I have so much that I have to really do a lot of thinking. Plus a lot of talking to a few people about some things about some very important matters that NEED to be addressed very soon! And I do mean SOON! It just seems that so many things have really changed in my life. I’ve had a lot of time to do a lot of thinking and the arthritis specialist that I see in Englewood…took sooo many blood test the first time that I saw him. I’ve been back to see him twice since. The second time I went back, after the blood tests, he told me that I had Fibromyalgia! And proceeded to explain it to me. I then told him that I had it. He gave me a new medicine at that time. The next time I went to see him was another follow up to see how the medicine was doing. He gave me another script. I have another appointment to see him again on Monday the 16th! Last week, while at my neurologists office, when being told that I was "missed diagnosed," I totally forgot what my arthritis specialist had told me! Of course….I was just blown away from the news that he was telling me. So… I’m feeling like I’m in some kind of a big "Whats going on here?" kind of thing! If that makes any sense at all?! So many things are just rushing around in my mind! I’m confused, upset, worries, scared, mad, asking myself did I miss something here? I’m going to get a copy of the results that actually say that I DO have Fibromyalgia from the arthritis specialist and get all of the information that I can from my neurologist as well! Then, put them together, and start reading and go from there! Because all of this is just way too much for me! Whats going on? I WILL get to the bottom of this! Because this is about ME and I can’t just not know whats what!Do I have this…do I have that? Who knows! This isn’t right! It isn’t at all fair to me! Not at all. I can’t sleep tonight because I have too much on my mind. Besides all of the medical crap, I have a lot more as well. A lot that is personal as well. I don’t know what to do about either. I talked to my daughter today which helped, and found out a few things from her that I knew nothing about that really upset me pretty bad! Which upset her! I don’t want her upset either! Geesh! Then when my home health aid came, I just broke down and started talking to her! She’s here a few hours, which she really helps me out so much. But I felt that I must have bomb barded her today with all my problems. I just started talking and it all just came out, and my daughter was sitting on the couch studying and was confirming what I was saying…And I just couldn’t seem to stop! She’s such a sweet lady, and she had been through a very similar situation as me, and had a lot of good feed back for me. :o) She had also mentioned a program that she thought I was on called Passport. Most of her other clients are on that. I don’t have any clue as to how to find out how to get on it or anything else, and she didn’t either, just the name and what the program does, they really help the patients. So, That’s another project for me to do on line…research on that.
I haven’t heard from sister. :o( I must have upset her. I apologized to her, even though my family and I weren’t invited to the wedding, only the party. I was just confused on the invitation that I received. I had no idea that a party would be at a church..thats all. I wish nothing but the best for her and her new husband. Even the rest of my family was confused about it, not only me.


It’s now 12:07 and it’s taken me all this time to type this! See how long and how hard it takes me?! My hands have gotten so much worse! I do want to share something, and I hope I don’t get any flak over it. So, here goes;


Love is patient,


Love is Kind,


And envies no one.


Love is never boastful,


Nor conceited, nor rude:


Never selfish,


Not quick to take offence.


Love keeps no score of wrongs:


Does not gloat over another sins,


But delights in the truth.


There is nothing


Love can not face:


There is no limit to it’s faith,


It’s hope, and it’s endurance.


In a word, there are three things that


Last forever:


Faith, hope, and love:


But the greatest of them all


Is love.


1 Corinthiens 13


I’ve always loved that! :o) I know I quoted, but so what! :o) So sue me! I’m tired of feeling that I have to hold my tongue on writing what I want to in my own journal because of a few mean spirited people! If you don’t like it…move on!
I have too many other things in my life right now that I need to worry about then petty people that seem to enjoy picking on others! And I say to you; Go some place else!


If I missed a word or misspelled so what! There are more important things in life then that! Geesh! Get over your selves!


Moving on…..


As you can tell…..this whole last week has made a huge impact on me. So much to do and so much to get in motion soon. And a lot of help need as well. Soooo…back to the drawing board for me. Back to researching on line for information. I’m in a bracket that I feel isn’t very fare. I’m not under the age of 18, I’m not over the age of 65, I’m not a veteran and a few other things I will not mention. Which leaves me in a "limbo" type of space that is hard to get help. I’m a 43 year old woman disabled woman. Thas it. I receive S.S.I. wich is $603.00 a month. I also get the Medicaid card. That’s what I live off of. I pay Jim $200.00 a month! Everyone else that lives here doesn’t pay anything! Which upsets me. Last summer…a friend of mine and I(well, she claims now she doesn’t know me now lol I consider her as a friend, friends help friends) talked about that, and got through to him and he finally decided to stop having me stop asking me to give him that money! Because I need it for my own needs! Well…now, It’s back to where I pay him $130.00 a month now! It’s something that he came up with and that’s what I have to do! So, I do it! <sigh> There is a co pay now on all of my meds. And I have to pay for that, my personal items, my other personal items like the pads I have to wear because I urinate myself! Those are expensive! I’ve said many times how I leave a lot out that I don’t write about, well tonight I’m letting some of it out! And here it is! This is my life! This is how I live! This is it, black and white! I’m still going to make a private journal, but still haven’t had the time to do it as yet. But I will. I also have some poems that I’ve written from when I was a teenager as well that I will post. That was a loooonnngggg time ago! LOL :o) I just came across them! The pages are discolored! LOL :o) Oh well. :o) It is now 3:15...I think I'll wrap this up. I hope I didn't depress anyone. :o) Sorry if I did. Thank you for all of your kind emails and comments! God blesses you all each and every day!

21 comments:

Anonymous said...

It's your journal Lisa ~ in YOUR words ~ it's all about you and what you need to off load - so, you do that sweetie.  We will listen, and learn and try to understand what you are going through. We all have a choice one way or another ~ i chose to read your journal because I like what you say, I try to understand what you feel, and to laugh along when you are funny! You're just one nice lady!  I just wish you didn't have to suffer so much.  Millie :-)

Anonymous said...

I just want to give you a hug (((((((((((((((( Lisa ) Things have got to get better, they just have to. I'm not far from Englewood either :)
Hugs
Ang

Anonymous said...

Lisa, you write whatever is on your heart.  It's your space to say how you feel.  No explanations are needed.

We love you and that's that!!!

Deb

Anonymous said...

That was a brilliant entry, it told us about you, your in a place were you can do that, you write from your heart, if you want to write it do it. Your journal is for you, if you get the odd comment you dont like tell them to move on and delete.Try and take one thing at a time, you have a whole set of things going off and thats crouding your brain. You will get the info and your point across to all those people that matter. I do hope you had some sleep, if not you are going to have a rough day. Your in my thoughts and prayers
love and hugs
katie

Anonymous said...

awwwwwwww hugs. Im so sorry. why do you have to pay anything to live there IM a bit congfused on that one. ????? anyway IM so sosrry I m sure it must have days you get hit like a rock with it all {{{{HUGS}}}}}}

Anonymous said...

Things have been pretty rough for you lately, more so than normal and you already deal with a lot as it is so that says so much about how you are feeling.  I'm very sorry for all that is happening, all the confusion going on with the diagnosis etc.  I hope you are able to find some answers soon.  It sounds like a lot of emotional stuff is going on for you as well, which doesn't help you in the long run with your disease.  You are lucky that you have your faith because I'm sure it sees you through tough times like this, it will always be there for you to fall back on.  I'm glad you are not letting that other person determine what you write in your journal, quote away if you want, put as many bible verses in here that you want because it is YOUR journal.  Nobody determines what you put in here but YOU.  I'm sorry that you had to come across someone as intollerant as that person who has been giving you trouble.  Write for yourself, with no concern for what other people may think, all that matters is that you stay true to yourself.  You know you are a good person with good intentions.  And your other friends on here know too.  I hope things start getting better for you soon!!!  Another long winded comment from me, lol... sorry!
xoxo, Heather

Anonymous said...

Lisa, Doctors love to diagnose--sometimes they seem to confuse us & we wonder, "WHAT?" .  Does one diagnosis negate the other?  Oh, you do have a lot to figure out.  If you want to talk ever you know where to find me.  Merry

Anonymous said...

Lisa, I am so sorry you have been having a rough time lately, If I lived closer to you I would help you out with grocery shopping, etc, I hope things get better for you and I pray for you every day, You are an awesome lady and a great friend, Love Ya and Huggggggggggggsssssssssssssssssssss Lisa

Anonymous said...

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Anonymous said...

It must be so frustrating for you when you're told one thing by one person and something different by another. I hope you can get to the bottom of it all. Sorry you still aren't sleeping. Some people who read these journals need to get a life!Just write whatever you want, it's YOUR journal! Jeannette xx  

Anonymous said...

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Anonymous said...

Lisa, I know where you are coming from. I have fibromyalgia too. and its been a fight to get someone to believe my pain, and then I went to a specialist at UVA, and they said I had it. But was little that could be done about. Tried shots. Some medication, that hardly ever helps. I've fought for SSI., got a lawyer and everything, and fought for 5 years, finally got in front of a judge and still didn't get it, He said if I could type on the computer , I could find a job. Ain't that some crap!!! You can't type if you can't get out of the bed until 10 or 11am. or can't sleep all night, no employer will put up with that. I've already been fired for just about that reason, at my last jobs. Its not fair. I feel your pain.
God Bless,
Your friend, in Va.
Liz

Anonymous said...

hi Lisa...

it is wrong for DRs to confuse patients, i have had it happen to me too and it is so frustrating and worrying...Best Wishes and Take Care!

Astra!

Anonymous said...

That took you more than 4 hours to type, Lisa. As you said, it must take a huge effort to do a length of text which would take me a matter of minutes. I'm not boasting about it, it showed me the extent of your problems. You have told us that you have a multitude of medical problems, but misdiagnosis absolutely does NOT help. Just look at it this way: the doctor is not God, he is only a human being, as fallible as the next man. Apart from the medical problems, there is a lot on the private front for you as well. I can only wish you strength from across the pond.

Guido
http://journals.aol.co.uk/pharmolo/NorthernTrip

Anonymous said...

I have fibro and cannot get a diagnosis.  You sound so different because of this, and going through all of this just this week.  I didn't know you needed the pads too.  That's so hard on the self esteem issue and the feeling of femininity.  I had that issue temporarily when my bladder dropped almost out of me when I lifted my daughter who was in a body cast after being hit by a car.  I had to have it sewn back in and from then on, no problem.  I hope you feel better soon.  Wish you could use a mic or a camera and we could talk.  I'd love to hear from you.
NELISHIA
http://journals.aol.com/nelishianatl/WISHINGANDHOPING/
http://journals.aol.com/tsalagiprincess1/JumpingOffTheDeepEnd/

Anonymous said...

I just wanted you to know, I really enjoy your journal. I am sorry your not feeling well. You are a very brave woman sharing your thoughts and feelings with us. May God bless you and your family.


In Christ,
Gabrielle

Anonymous said...

Man you are the forth journal today that said people were being mean!!!  Don't worry about them you have far too much already to be worrying about!!! Hugs,my friend..you are in my prayers!! TerryAnn

Anonymous said...

Wow, you have a lot to deal with.  But the Lord will help you through.  Just take things one step at a time.
You are at the same place I am financially.  I am on SSI disability and medicaid.  John is on SSDI and medicare.  Mine was cut to about $200 because we got married.  We have to pay a rent.  But we always make it somehow b/c the Lord provides.
I understand being scared when getting a diagnosis and not hearing it the first time.  That happened to me also.
Both Valerie (my sis) and I have fibro.  If you want to talk, email me.
As John says, take things one day at a time, one minute at a time.  That is the only way to get through sometimes...  And keep positive.

Krissy
http://journals.aol.com/fisherkristina/SometimesIThink

Anonymous said...

What was going on in J-land last week?  I've read 5 of them where people were giving them a hard time about what they write in their own journals.  It's crazy!
Hugs,
Dana

Anonymous said...

go back and think about what propelled you to even think about beginning this journal..it was not for comments nor for companionship was it? It was for YOU and YOU wanting to express yourself. Do not let any AH upset you.
You are a smart and loving lady who has been dealt a crappy hand....but you will rise above it. I am always here.
lisa jo

Anonymous said...

Sounds like a terrible week for you.  I would ignore the uglies and delete.  It's your journal.  They can click the X.  I don't know why people want to be so miserable.  Wouldn't SSD be more beneficial for you?  I certainly hope the doctors quit fussing and come to some sort of agreement.  Now, I'm a little confused....isn't Jim your husband or is there a landlord Jim?   LOL...I'm losing my mind, I think.  HUGS  Chris