View Full Version : Never give up because.........
09-09-2009, 12:16 PM
aS YOU ALL KNOW I TOOK ILL IN 2004.......they said i had a nervous breakdown and so i lay in bed for months.My hair fell out then they saw it was something other than in my head.Then i was told it was M.E Chronic Fatigue Syndrome. Then as the years went by and i was swollen and hurting and my hair had all gone.....i couldnt breath.The doctor said my chest was clear.I began to feel yes it's all in my head.I changed doctors and was told i have severe asthma,which thankfully now after a long struggle is getting under control.My hair grew back. More recently this year got so intimidated by doctors i stopped going.At Christmas i missed all the celebrations as i was in hospital on morphine as i got lock jaw 3 times. I was so desperate,friends had left,i had noone to talk to,i lost all my confidence no self esteem.
I joined WHL. In such a short time members have helped me through such bad times,dark times,i have been desperate.Even after getting my Lupus label taken off me,ive been so low and was going to give up.Ive been so sick recently,so lonely always the members of WHL always are there and gave me the strength each time to keep going.Even talkking with a doctor for me was a day of doom,i hated it,they never listened.They've yawned at me,been rude to me and many have had the god complex.Each appointment i came away like feeling it was all in my head......members of WHL were always by my side with comforting words and such fab advice.
This week i wrote on a post saying i was ready to give up and believe its all in my mind.But then members come to my side to give me the right words to say to these men in white coats and bad attitude.Recently i changed Doctors and it was he who diagnosed me with Fibromyalgia,i didnt know i had this.Members continued to give me such kind and caring words even if they were feeling sick that day they were always there.Me who is nobody,me who is afraid of everything and everyone...they were always there.
Today was my Rheumi appointment. Today i was prepared to fight back as 2004 is along to to wait for meds or help from a doctor.My hair fell out a little more as i woke,but it just made me mad at these doctors,who never made me feel good.
I went in,spoke confidently,in fact the voice i heard today was a strangers voice yet coming out of my mouth.Felt so good to see the Rheumi actually make eye contact as i told him you are the key to my future health, you will help and listen to me today.I have done allot of research and you know i have insomnia.You say i have Lupus then take it away from me leaving me alone to cope with no meds.THIS STOPS TODAY!!!!!
TODAY IS A GOOD DAY......as i was finally given Plaquenil and on monday will be given Ambien to finally have a good sleep after all these years.Today the rheumi said,i may have Lupus but will not label me just yet.Today i was diagnosed with Sjogrens.
Today i feel so proud of the members of WHL and thanks them all for helping me be so strong in with the doc today.
Today is my beginning.Today i get medication to help me sleep and to help me feel better.Thanks you Saysusie for this wonderful site in memory of Louri.Today you all helped ME!!!!
I just hope as im so allergic to many meds im not allergic to this.I will take it tonight with a smile.Oh it feels good.
Thanks Oluwa,Noel,Jeanette,Phyllis,Abbasgirl,Rob it was your advice and words that made a difference.
Im so happy i have a few more names and it wasnt in my head. So MEMBERS....never give up....keep fighting.!!!!
Love and a big smile
09-09-2009, 12:30 PM
I read you post, my eyes brimmed with tears, Amanda. I am so happy finally Plaquenil and Ambien...so proud you stood strong like the woman we know you are inside and out..
Head hugs...body hugs...squuueze...
To your future...Yay!...
Hugs with love,
Olu aka Turdie
09-09-2009, 12:38 PM
Thanks so much for all your advice,i used your words and oh wow,do i feel good right now,even though i feel sick i feel soooooooooo good.
Love n hugs
09-09-2009, 12:42 PM
Oh, you are so much welcomed...you had the words in you all the while. It is when we have been beaten down, feel mistrust we forget I just jiggled ya little bit. It was all you, all you...
Remember ya might get nauseated and headaches from the Plaquenil to start....it should subside within two weeks...eat a bit with it...
09-09-2009, 12:46 PM
Well i already feel sick with the patches,so im hoping i might now realise any difference but thanks i will eat something and drink milk it says.After the fuss i made today im hoping im not allergic cause that would be funny :) not!!
This is a two way street. I have had days where I just wanted to give up. Life on those days was just too much effort, too much pain, both physical, as well as emotional. So many people here have helped me, and one of those people, is you. You have always, without fail, had the right words, at the right time when I needed them. And I know I am not the only one who feels this way. You give so much.
I remember when you were told that you did not have Lupus. You sent me a message saying that you no longer belong here. I told you that was absolutely not true. Lupus or not, you have become a trusted, and loved friend of so many here. And since this place is also for the friends and family of people with Lupus, you most certainly do belong here. I am thankful every day, that you stayed.
You have found a strength and confidence that I believe was always within you, you just needed help in finding it. Today, your attitude and demeanor is so different from the person I knew when you first joined. You have always been strong in the support of others in need. Today, I see a woman who is also strong in the support and well being of herself.
09-09-2009, 01:18 PM
Thanks so much that was so kind of you...so kind.
09-09-2009, 01:38 PM
I am so proud of you. You must be so relieved, finally you have the meds you need. I have been on Ambien since 2001, I take one every night, it's a God send. The first night of sleep, felt like all the Holidays combined into one. I will bet you, that you will feel better in a short time.
Good for you.
09-09-2009, 02:02 PM
i'm so glad you are full of hope and found your voice. i can't stand when doctors forget a.) that this is a person they are dealing with and not an experiment in their own egos and b.) that they aren't the ones who are actually DEALING with the sickness. The first doctor I went to said "oh, you have lupus." and gave me no information on the subject at all!! How cold! Anyway, keep us updated. I'm sending lots of love your way.
09-09-2009, 02:13 PM
Thanks so much Debbie.He will only give me 2 weeks supply as they are 'very addictive'' bla bla , but i tell ya if they work and wake up to fireworks you know its me lighting them :).If need be i will take 1 then hold on to em like gold.
Thanks also Sarah.Yes they have been so awful with me and i feel sorry for any member who went through what i did cause i did nearly give up.This is the rheumi who said i do have Lupus,but because my bloods say im so healthy lol he wont actually say i have it again so fast.Protocol,but i dont care now,i have meds and now i may have a chance at easing.
Thanks so much for both your support n kind words.
love Amanda.....who has just swallowed her first pill yipeeeeeeeeee! xxxx
09-09-2009, 02:56 PM
09-09-2009, 03:05 PM
Ah thanks.I never thought id have a day come my way like it did today.So there is hope for everyone! Hope you are feeling ok.Hey do you see your friend who just got married to the singer? xxxx
09-09-2009, 03:29 PM
i just found another reason to hate paying bills....that is what i have been doing this afternoon, and i missed this incredible news....hooray my friend.
amanda, i wish you would go back and read some of your posts when you first joined, and reread today's post, and you will be amazed at the strength that is evident today. congratulations to one of my favorite people in the world....you have overcome obstacles that were so high and most people would have given up....but you didn't, and look at you today.
you better be walking around your home, loving all of your little family and with a huge smile on your face....your post today, made me smile from ear to ear and at the same time, it made me get tears.....
I CELEBRATE YOU, Amanda
09-09-2009, 04:01 PM
Phyllis, Thank you and im so glad you paid your bills thats important !! Yes i might read them tomorrow.And i am still smiling as i took it an hour ago and feel no reactions so far,so hopefully i can continue taking it.Lets hope when i wake i feel like this,cause that means i have hope!! Thanks for always supporting and advising me Phyllis.....sending you gentle hugs n love.xxxxxxx
09-09-2009, 04:58 PM
Outstanding Amanda. I'm glad you stood up for yourself and got the proper results. I'm glad you are on medication...I hope you start to feel better soon. :hug:
09-09-2009, 05:00 PM
Oh thanks so much Brenda.Ive waited along time for this day.xxxxxxxx
09-09-2009, 05:35 PM
Angel...we have not seen or heard from her..they went to the Bahamas after the wedding and now I think they are traveling to promote.He also had scheduled dates all over the US to perform prior to the song hitting the radio. It is all over the place here and in the top 10 Billboard!! I am so happy for them. She is a wonderful spiritual person and she teaches yoga when they are in London. Be well.
09-09-2009, 05:52 PM
I am so happy that you persisted, found your voice and were finally HEARD by the physician! It is very, very discouraging to know that something is just not "right" only to be poo poo'ed by the medical community. Today, you've received the validation that has been so elusive and much deserved.
Plaquenil takes some time to start "working" so please don't get discouraged if you don't see immediate results. I have a co-worker who swears by Ambien for insomnia.
Today is a great day for you, dear Amanda. I am so happy that you can finally receive treatment. Take care!
09-09-2009, 06:31 PM
We've never met, or talked, but you have inspired me tonight. What a wonderful post. I'm all teary-eyed now!! (in a good way!)
I really hope the Plaquenil is helpful to you.
09-09-2009, 06:57 PM
Amanda my sweet angel,
I am so happy for you and proud of you today. It was wonderful reading your words about how you conquered your fear and spoke up and stood up to that doctor. I really believe that voice you didn't recognize was God and his angels working through you to help you. I hope that, as I write this, you are safe and snug in your bed dreaming the most wonderful dreams on your first full restful night of sleep in five years. Your words today were inspiring and full of strength and are going to help many of us find hope in our own struggles. Thank you for sharing your wonderful story!
It is a wonderful moment when you find your voice.
It is up to us to stand strong and speak confidently when it comes to our issues and our health, what no one tells you is that 'HOLY COW' that is hard to do! So...CHEERS TO YOU!
You are a wonderful being with a STRONG VOICE, always use it :)
OH! I put in a happy face and got a laughing face? Maybe I need a tutorial on using "Smiles"!
09-10-2009, 04:06 AM
Andrea,oh wow i hope he hits the big time with his songs as his voice is fab.Yoga is a good job to have,glad she has you as a friend.
Bonus Mum, thanks so much for the info on plaquenil its very much appreciated and thanks for your kind words.I get the Ambien Monday when i see my doctor,so i carnt wait to see if it works.
Bunnie, Thanks so much for being so lovely.I told my story as believe me,ive been through the worst doctor appointments,even being turned away for the dead,when i was so desperately ill.So to know someone with a little success will give hope to others to keep fighting.I know i have along way to go yet,but to have this one moment of happiness is a good feeling for a change.
Sandy, you know what, i believe you.The night before i did my angel cards they told me they would be with me,i even prayed.But also its members like you who gave me info,help and support also that helped me through it all.Ive along way to go i know,but this moment feels nice,so thank you.Oh Monday i get my Ambien,so i'll let you know tuesday how it went.x
Samo, oh your dog makes me smile,so cute.Yes and thank you.I never realised back in 2004 just what a fight i was gonna have with the doctors i tell you.Sickness should come with a health warning in regards to Doctors attitude.I swear they have not helped my well being at all this year.Until now.Im so weak,so intimidated and i nearly laid back and believed them all.Thank god i listened to everyone here when you all said dont give up,go back say this n that.Im so grateful for all of you,believe me.Thanks so much.x
I liked the smilie as im doing that movement now....i will tell ya why.....
Yesterday as instructed by the Doctor,i called to make an appointment for an eye test.The lady at the optician then teold me i have to pay for the test.I told her she was mistaken and with an attitude she said....anyone with Incapacity benefit have to pay for their test...i said you are wrong and left it. Later i spoke and told Oluwa from here.She told me how important this test was.As i looked through my paperwork,you know i found a certificate from Incapacity.It lists all the things and tests i can get free.Guess what number 3 was.....yip an eye test.
So this morning i had the pleasure of calling that snotty woman back and letting her know she was wrong.It felt good.I have my FREE eye test on Monday :)
Also so far so good with the Plaquenil.!!!!
Love n gentle hugs
09-10-2009, 06:30 AM
Look out World! Amanda's been empowered and she's not taking anyone's crap any more!
09-10-2009, 08:21 AM
Way to be strong!
Keep it up, and keep us updated.
Praying for you,
09-10-2009, 11:03 AM
Atta girl, Amanda!!! (((((((APPLAUSE)))))))) (((((Pats on the back))))))
I'd love to see the look on the snotty woman's face when you teach her a thing or two! lol. You go girl!!!
And...any changes in your eyesight after the test...go back and tell them. Even if it's a slight change.
I asked my gi doc this week why does it seem like rheumys are afraid to diagnose when it comes to autoimmune disease. He told me that most docs he knows aren't afraid to diagnose...they're afraid to treat the disease because of the dangers the treatments pose. He also said, it's more work for them to do, keeping tabs on your health while on the treatments... and they make no significant amount of money off of that unless they do the tests in their offices. I saw a rheumy who did that in his office at the beginning of this nightmare. I mentioned it to the gi doc and he said he knows that doctor and he's AWFUL! lol. I told him I appreciate that. Not many doctors will talk about other docs.
I don't know how true his statement is, but it makes sense to me. It's like you have to MAKE them treat you.
09-10-2009, 11:15 AM
You are so RIGHT!! I was demanding my meds and treatment yesterday instead of the intimadated little crying girl just sat obeying.I never thought i would actually get my way.To make him feel better he said.....i was going to start you on Plaquenil anyway....yeh course you was :) But it does make sense what you said and its so not right.The hell we all go through until we get that dx.Im looking forward to the eye test on Monday lol,just let her pretend she was right again.I feel sorry for all the others she sent away,like she tried with me yesterday,i was going t leave it as i couldnt afford it,when in the end i was entitled to have it free.I hope you are resting today and enjoy your day out shopping,but take it easy.Thanks so much for your reply my friend.
love n hugs
09-10-2009, 02:02 PM
oh lordie lordie....here comes amanda the lion king....
i love it girl...you just keep on standing strong....you are awesome.
Abbasgirl....thanks for sharing that story...it all makes sense, I am very happy for you that your dr. shared his honest opinion of your old rheumy....now you don't have to second guess your decision to find another.
Samo....I LOVE YOUR ACVATAR...what a precious dog.
09-10-2009, 02:37 PM
I LOVE YOU AMANDA!!!!!! YOU ARE OUR LION!!!!!! and our FRIEND!!!!!!!!!!!!!!!!!! :cute:
OK, I could not help myself so I had to post a reply.
First, thank you Amanda and Phyllis for the compliments on my little angel Oliver. He is, after all, my furry son :cute:
Amanda, good for you on calling that snotty woman back. Plaquenil was one of the first medications I was on and my doctor required me to have periodic eye exams. So good on getting some more practice on using your voice.
Much love to all!!
09-10-2009, 07:22 PM
I read what you wrote and you are something--something very special and precious to us. I am so glad you found your voice and that your rheumy is making eye contact with you and listening to you. I hope you meds kick in and work for you. I, too, am allergic to and have bad side effects to many meds. If you can't tolerate a med get your Dr. to prescribe another one for you, until you get one that you can tolerate. Will always be here for you. We care.
09-11-2009, 06:05 AM
Samo & D.O.W,
Thanks so much for the posts and information and support .I really appreciate it all.Thank you.
04-26-2010, 05:09 PM
I found this old post and im adding to it. Just to say still dont give up!! Times will be hard.Im sorry im M.I A but i got that dark cloud all around me,i feel awful,ive been hiding in Mafia Wars,sometimes just sitting there trying to feel some other emotion than the depression.I always pop in here,but i hope you all understand when you are so low writing to others sometimes isnt possible,with no good thoughts to find....but i know i;ll come out of this.Like my Angel cards say when i pick one, Have hope because something good is around the corner!! Must be a very big corner :) but im hanging in there. Hello to you all anyway and sorry i seem to be ignorant,im not really....diggin hard to get out lol.
Lots of love.xxxxxxxxxxx
04-27-2010, 04:31 AM
We all have our times of silence. Just don't leave us. We are here. I'm having a bad time also; but i've decided to keep on plugging along.
"Come to me, all you who are heavy burden and I will give you rest. Take up my yoke and learn from me, because I am gentile and humble in spirit." Matthew 11:28
this one helps me a lot.
Nonna :wacko: :twitcy:
pain you are not the enemy, you are just there. I'm ignoring you.
04-29-2010, 01:02 PM
Nonna thanks thats such a nice verse. I hope you ease also soon. My Doctor has been called again today this time by my own Mam. She went mad saying this is it someone has to find out what exactly is wrong with me.I know i have a few diagnosis's but my hair is falling out,i look like death and feel so low and anxious and have a huge rash again....which is invisible to doctors :) I laughed when she put the phone down....apparently now theyre going to look into Lymes disease. I have lost all faith in my doctors so im taking that comment with a pinch of salt.Last time they said it was Lupus lol. 6am i went to sleep finally this morning,just feel wide awake at night yet so very tired all the time if that makes sense.
love n hugs
04-29-2010, 03:19 PM
I am thinking of you and will pray for you.
04-29-2010, 05:12 PM
Amanda we all have to be our own advacits spelling probably wrong but we have to stand up for ourselves. After all who knows our bodies better than we do. Sometimes you just want to scream listen to me it is not in my head. Way to go and it is important to report any change in your vision on plaquinel. I been on it 530 days as od today and i have had some things happen and had to go for and eye check but it was okay. Love and prayers Bonita
04-29-2010, 06:48 PM
I guess you thought that I was lost in the wilderness or something:nah:. I am so sorry to be Soooooo late in joining this thread. There has been a death in my family and I've been trying to help my Mother make arrangements and trying to help her with her grief. So, I've not been here as often as I would like to have been.
But, first, I want to say that you have ALWAYS been there when I was in my darkest and loneliest times (both her and on FB) and have always given me encouragement, hope, and understanding. So, I want to thank you for being who you are and, as Rob mentioned, any thanks that you give to me is a two way street!
You have been so brave and have never given up, even when you felt that there was little hope. Now, you have become a lion and an avid advocate for yourself. Even up to telling that snotty nurse that you did not have to pay for the eye treatment:cute:. Good Work!!! You are so much a part of this family and are very much admired by me. I wish that you could finally get the rest that you need and some of the answers that you need. Are the doctors looking for Lyme Disease as an overlapping disease with your other issues?? If so, I think that it is about time that they consider the fact that you are not suffering from one illness, but rather several overlapping illnesses ...each of which should be treated!!! If they have not considered that fact, then tell them to consider it instead of continuing to send you on this stupid merry-go-round! If there are more than one illnesses occurring simultaneously, then that would answer many of your questions.
Please know that you are in my thoughts and in my prayers!! Sending you the warmest hugs filled with love!!
Peace and Blessings
05-01-2010, 05:49 PM
DOW & Bonita & Carlotta, thanks so much for caring so much. I am not really sure,the doctor spoke to my Mam as she has had enough as ive been quite sick recently.Migraines,vision disturbances,numbness,chest pain bla bla bla.I went for an eye test they found a dot ? Asked what she meant and said oh just come back in July for another check and that was that lol.Asthma clinic are arranging a sleep study on me and want me to see a cardiologist for the breathlessness,not the asthma....and also a neuro.Thing is i'll be very surprised if my doctor actually arranges any of these appointments...at the moment not sure whats happening.Only know i need help urgent and ive lost all my confidence dont seem to be able to cope very well.Having neighbour problems so im away for 9 days ...oh so peaceful here.
Carlotta, thanks for your kind words and im so sorry and send you my deepest sympathy.You are so kind to everyone here always.Hope you are rested now after your shows.Glad you enjoyed them.
Bonita, yes we all know our own bodies,but isnt it so frustrating, all the wasted time and wrong diagnosis we all go through to actually try to feel well or get the doctors to get their acts together.Im glad you are going for an eye test....let me know how you get on,i'll be thinking of you.
DOW i hope you are feeling a little better every day my friend....think of you often.
lots of love
05-01-2010, 07:07 PM
hello my little english love,
i sat here reading your original thread, and was in awe, you have been fighting for decent medical attention for too long. It is past time for them to pay attention to you. I am glad that you are taking a few days away from the neighbors and everything...you enjoy peaceful rest, my friend.
I agree with Carlotta, even if what you have is multiple auto immune diseases, the drs. are responsible for sending you to the appropriate specialists, completing diagnostic testing, and putting you on the appropriate treatment plan.....for one or 15 diseases, how ever many you have. I know you are tired, but take this resting time, then march back into battle and fight for your rights. You DESERVE good medical attention.
Now, i need to apologize to you. I have not been an attentive friend. We all face times where we just don't have the energy to talk to anyone, and our minds just don't want to think of the words to say.....it is very frustrating, but it is a realty of our lives....I promise you that I will be watching out for you.
05-02-2010, 03:36 PM
Oh Amanda, I'm so sorry you've gone through so much lately. And I've not been around very much, although you have been in my thoughts and prayers. I am so sorry. I understand so well your frustration in not getting a diagnosis and the care you deserve. I think that's the MOST frustrating part of all this - dealing with the doctors and getting what we need from them. It shouldn't be this hard. Good for your mom for advocating for you!
The thing is, I think one thing I've learned in the last nearly 4 years is that doctors know much less than we think they do. They have the scientific training, sure, but they don't know anything about our lives, and the range of emotions we experience because of our physical challenges. They guess at a diagnosis, later to discover they were wrong, and expect us to simply go along with beginning the process all over again. And whether they know it or not, THEY work for US!!!!! I'm really glad you're away resting for a while, and I agree 100% with what others have said here. Relax, take the time you need to center yourself again. But then, when you're ready....take a stand. Don't let them get away with not giving you the diagnosis and treatment you need - go get them, girl!!!!!!!
You have been such an insppiration to me, and I'm sure countless others as well. Remember how you faced down that MRI machine, and won?!?! You can do absolutely ANYTHING you set your mind to, Amanda.
And if you don't think the doctor will arrange the tests you need, here's what I would do: ask them to please schedule the appointments before you leave. Plop yourself down in a chair, and say, "I'll wait...please call them and tell me when my appointments are." And do just that...sit down and wait!
I'm sending you LOTS of love, hugs, and healing wishes and prayers, my friend. Be gentle with yourself, but be forceful with the docs! :)
05-04-2010, 05:50 PM
Brandichi and Phyllis you both have helped me always more than you ever know.I jus feel so embarrassed im still here writing the same old same old.Long for the day im here with positive and happy feelings inside so i can be strong enough to fight n speak up for myself.I think each doctors appointments and bad attitudes have actually started chipping away at the soul now.Im still fighting but with less fizz at the mo.....it will come back...soon i hope.Just feel like a child...need guidance n help to make them hear me....or a good shake..but lack of sleep is eating my energy.Im that person who needs that violent shake n slap like on Airplane the film lol....except id sit n let you do it lol:) Thanks everyone...each post really helps me.
Lots of love n hugs.xxxxxxxx
05-04-2010, 08:55 PM
Oh Amanda, my heart is just breaking for you. I can hear the despair in your words. I know what it's like to be in that dark place and it's absolutely a rotten place to be. I also know that you are powerless over it. That cloud has to do it's "thing" and it will then lift. It may take a bit and test your last fiber of courage, but it will lift.
It saddens me that you have struggled to get proper medical treatment and a correct diagnosis for so long. Where's the doctors' passion for putting the puzzle pieces together and determining the cause of your suffering? That is SUPPOSED to be their purpose--not fattening their wallets. I wish I was more familiar with the medical delivery system where you are so I might make some suggestions, but unfortunately, I cannot.
Please know that you're a valued member of the family and we are all hoping and praying for someone to take the time to hear you. We're listening.
05-05-2010, 07:31 AM
Thanks so much BonusMom and i know everyone hear understands what im saying.You all give me hope.
Lots of love n hugs.xxxx
06-24-2010, 06:39 PM
YOOHOO hello everyone.....well what a rubbish year ive had so far but im still fighting,even though i feel im not winning but wine....ing :) Hope you all are coping ok and taking one day at a time.Im still ere and popping in to see you are hanging on in there.Im hooked on mafia wars so when im bad i go attack someone lmao....not in real life though.Lots of love everyone.xxxxxxx
06-24-2010, 06:45 PM
hello my little english friend....so glad to see you around. I am glad that we are back.
06-24-2010, 06:51 PM
We were never gone....just resting and trying to cope ....or like you becoming a grandma again.....yipeeeeeee:)xxxxx