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I can't do this right now
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I can't do this right now

As many of you know I cycle up and down with depression and fatigue.  I just got back from my new PCP (old one retired).  New one doesn't "buy" that I feel I am unable to work.  At each visit he urges me to find something I can do, to make use of my knowledge, to continue to be productive.  As I try to explain my fatigue, he suggests things like, arranging to take a nap in the day, or some other inane suggestion.  I struggle to answer a few questions here before I need to lie back and close my eyes until the world stops whirling.  I have about 3 hours of useful energy a day broken into five or six hitches.  

I tried to tell him I found something that I could do online, and that I got a lot out of it - feeling appreciated, useful.  Instead of being pleased that I'm trying to do something he advised me "not to get a swelled head over it."  I'm frustrated, humiliated, wondering if I am, indeed, as lazy as he suggests or just a wimp because I gave up.  

I have great admiration for people with this disease who vow to fight and not let it define them.  I can only ask, "Fight with what?"  I am exhausted by emptying our four litter boxes or going to the basement to run a load of laundry.  The trip to the doctor put me down for three hours.  Today I am overwhelmed by the pain and frustration on the board.  I can't formulate my thoughts, I can't put simples things together.

The two doctors that treated me with understanding and compassion have both retired.  All the new doctors I meet make some snap judgment about who I am now.  I am so tired of being treated like a depressed middle aged women who claims to be disabled because she is a little dizzy, a little weak and a little tired.

That's all, the tones you hear in my notes are just that, the same frustration, pain, fear that you all feel sometimes.  I miss the person I was!  I was good at it!  I don;t want to be this way!  q

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I'm so sorry that happened to you.  And there is no "swelled head", we really do appreciate you for everything you do and for who you are.  It shows how much you care for us, not just about how it makes you feel, and it's so appreciated.

I know the second guessing.  Been doing it every day all the time, but like my coach told me, only you know your body and only you can judge when enough is truly enough.

You are fighting, even if you don't feel you are right now.  Even just talking on here, and helping everyone, is fighting.  It's just a different fight than what most people think, but one so important that anything else pales in comparison.  Fighting with hope, and sharing that passion with others.  So it's a down time, maybe things will get better, maybe you'll find a better doctor.  Only the future knows, and I'm beginning to realize that there is no way we can guess what will happen to us.

I hope you start feeling better. Thank you for everything you've given me and I know will give to me.
Corinne
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Quix,

Sorry you had such a bad experience.  You must be so frustrated!  Don't give up and don't let anyone invalidate you for what they don't understand...  

Can you find a new PCP?  That would take a lot of effort... finding a good doctor to work with is one of the most frustrating things any of us go through.

Know that what you contribute here is invaluable, and it is ok if you can't do this every day.... and need time to recoup at times.....  

Let them try being dizzy, weak and tired and see what a struggle it is to get through....

None of us want to be this way!  Why can't people understand that!  The people who say this is psychosomatic / somatization disorder.  Why on earth would I want to stop doing all the things you love doing unless you really can't help it.

Hang in there.  You are a great person!  You have MS, but it is not who you are.

S
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I am truely sorry for the anguish you are feling right now and wish there was a way I could reach out through the net and give you a shoulder to lean on, if only for a moment.  I spent three years trying to teach "health care professionals" in nursing homes that pain is what THE PATIENT says they are feeling and that there is to be no judgment on the part of the doctor or nurse dspie any history of drug use or other non-medical issues. The same should be for fatigue.  I don't know a single employer who would allow a "nap" during working hours.
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Boy,I sure would like to know why so many defective Drs come out of med school.

You have been such a great cyber friend and a God Sent to many of us here.

I can relate to the fatigue,this is a new one for me,but I sleep more then I'm awake and get very little accomplished.Fixing a simple dinner wears me out.I mop the floor and need a nap.Laundry is physically challenging.Heck I fell a sleep in a restraunt.

I'd like to see these Drs walk in my shoes one day,leg braces TOOOOO.Inject themselves 3 times a week and start there breakfast with 5 pills just to function!!!!!

I had to go to my son's football scrimage,it took everything I had just to be alert.

I wish I could send you my GP he is so sweet,compasionate and very caring.(plus a hotty).I seen him yesterday for stomache problems and my insurance will only pay for nexium once a day.He was kind enough to give me samples for 30 days to see if that helps taking it twice a day.

My heart brakes for you,there are kind hearted DRs out there,but they seem to be limited today.

Yea we may get dizzy,fatigued ,forgetful ,walk funny,weak,but we have a reason for a disability ,theres(Drs.) is just ignorants!!!!

Quix,you still are the same person,just with limitations,ya know the good Lord gives us no more than we can handle,but he sure can test us.Just take some quiet days for you and reflect on how many here you have helped.You are a DR with a disease and you understand our fears,the DX process and the whole 9 yards.You have taken your time to answer questions,research and be a great cyber friend,you may not have your private practice in an office anymore,but you sure have helped so many here.Maybe this is where the good Lord needs you to be right now,only time will tell.

I know I get real tired of this disease,theres no easy answers,but taking each day as they come.do what we can.

I miss the old me also,but I found dwelling on not having the old me just makes me sad.I wish I could tell it gets easier,but I can't answer that as I know my disease has advanced,but I do plan on living each day to its fullest,that is between naps.

Take some time for you,thats always important.

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Hi Quix, I'm so sorry that you are going through this with the new Dr.  When I meet Drs like that I try to think...they must have missed the 'how to be a compassionate human' lecture...he should try walking in your shoes for a day...it makes me so mad.  

You have been such a great support to so many people on here, more than you will ever know and more than you will ever admit to.  Your support has given so many people, including me and others from the 'great undiagnosed' the ability and knowledge too fight.  I can truely say from personal experience you have seen me through some pretty dark times and have given me the knowledges, answers and straight talking support to not dwell on things and try to carry on the best I can and I thank you from the bottom of my heart.

My friend has MS and she said something to me a while ago which has always stuck in my mind, she said:  I may have MS but it doesn't have me.....

Stay in touch, look after yourself and for once take some time for you...you deserve it.

Em
x

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I echo all the posts hear and will let their eloquence speak for me as well!!

I have a saying that I use when frustrated with the medical field. "Managed Care--they manage not to care". I think that is why we can't find good docs anymore. They are all too busy trying to make insurance companies happy and forget the real reason they went into the field!!

I have no doubt in my mind that you were a very compassionate, comprehensive and caring doctor--you still are!!!! I can read in all your posts the passion you carry for the medical field. You are a diplomat for your colleagues yet an advocate for all of us. You do a great job balancing between seeing things throught the eyes of a physcian and through the eyes of a patient.

I can only imagine how much more difficult it is for you to find a good doc due to the fact that you have first hand knowledge of what one is and that is in you.

Have confidence in your gifts and abilities and allow yourself to have down times, but in those down times use the little energy that you do have to build yourself back up spiritually, mentally and emotionally in that way you can rise out of your valley stronger, brighter and ready to take charge yet again!!!

My prayers are with you!! I hope you can cuddle with those cats and feel their loving purs.

N
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Dear Quix,

You mean so much to this group! I'm so sorry to hear about your "struggles".
If you're into reading, as I'm sure it's been a big part of your life.... :)

you might look at:
thehumansideoflyme.net Dr S. speaks about depression and other stuff; OCD is another big one.
ilads.org also covers this

I extend good thoughts your way ---hang in there okay?
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I'm so sorry you were being spoken to like that!  Uggh these Drs!

I seriously do not know how you are able to answer all of us the way you do!!!!!!!  I have a hard time reading and understanding some posts because at times my mind feels like a train wreck!  But you keep going and helping.  If you don't know the answer to our question you research it FOR US!

Your a DOLL to all of us!!!!!!!  

I cleaned my entire downstairs yesterday and I was done for the day!  I took hours because I had to sit down for 15min every 5 min!!!!!!!!!!  I'm so very fortunate because I have 3 kids, 2 are teenagers a boy and girl.  And they do their chores and pitch in all the time.  I don't even have to ASK!  They see me starting to clean and they say "what can I do to help you"!  

I don't know sometimes if they are so awesome because of me and my husband and the way we brought them up OR inspite of us...lol  

I think many are like me that read your post....AMAZED!  You are far from lazy!!!!!!  I don't know where half of us would be without your wisdom and insight.  We'd be talking to eachother and figuring nothing out!   You never come across is someone who has a swelled head.  You come off as Kind, Caring and most of all COMPASSIONATE!

We all hear the same things from our Dr's ..... you need to get up and go on and move around.  Your lazy, your crazy, your bored with your life, you smoke!  I'm sure there is many more little put downs people hear.

We appreciate you so don't you give that Dr the power to question yourself!

Lisa
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I am sooo sorry that you find yourself feeling down.  I am going to just speak for myself right now even though I agree with what everyone else has posted.

Before I met you and you took your precious time and thoughts and energy to help me I was on the brink of giving up.  I, like you, am tired of not being the person I used to be - fun loving, hard working, the ultimate gardener, home builder, etc.  Now I am just a lump of deteriorating flesh that can't walk, can't talk, can't see, etc.  You jumped right in and answered me the other day when I was having a serious problem and was scared out of my mind.  You are my HERO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

You are one of the most special people I have ever had the blessing to know.  We may only be connected thru this forum, but I feel that it is much more.  I truly believe that you are connected to me and everyone else in this forum thru our hearts and souls.  We are always bombarding you with questions and you never fail to take your time, no matter how you feel, to help us.

Well, I for one, and everyone else on this forum I am sure, are here for YOU!!!!!  We love you and think you are the best person we know.  You are still a great doc and always will be, your insights and suggestions to everyone here proves this beyond a shadow of a doubt. Who are you gonna believe?  Some idiot who doesn't even want to know you?  Or all of us who do know you and love you for the person you are?  I vote for us!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am sending you an enormous hug right now!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

With love, appreciation and support
Doni
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Sorry for what you are going through.  It seems so unfair after all you have been through already.  I hope you find a new doctor.  Could you call the retired doctor and ask for some names of others who might be more compassionate and understanding?  

You have helped so many of us so please do not discount anything you are doing.  You know the value this holds.  Does this doctor feel it doesn’t have any value because there is no monetary payment for you?  I hate that kind of attitude.  

With all the information you have gathered you should write a book…like a self-help book for neurological disorders.  Seriously.  The how-to guide that is obviously needed!!!

Consider yourself hugged!!!

Wanna
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Im sorry the doctor made you feel this way!! How insensitive are they?

You have carried many of us through on here, you have looked out for us when we have been down and informed others of this, what you have done on here is unmeasureable.
Do not let what a doctor said to take away what you have done on here.

You are still who you were inside and though this disease will take some of your physical and mental it will never take your spirit!!!

You are a amazing lady and intelligent lady you have helped people on here and when you were practising as well there must be thousand of thankfull parants out there too.!! You have so much to be proud of some of us only dream of achieving what you have.

I will pray for you, you have given so much to people over the years, god must have a heart for you.

You have gone on a amazing journey through your illness and along the way you have stopped to help people even when you did not feel like it that is not lazy!!

We are all here for you and even though i dont know you that well i send all my love hugs and kisses to you.

God Bless x
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I agree with what everybody's saying. It amazes me that doctors would treat A FELLOW DOCTOR with such disrespect! You ARE a godsend to those of us struggling to find our way. I am sorry that we sometimes may seem to forget that you have the same struggles. A person does need to be a paid employee somewhere to be useful. There are so many here who would be so lost without you.

Let us support you for a while - we owe you (your consulting fee:)

God bless you for all you do for all of us.

Penn
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Quix, I'm truely sorry your new PCP does not have a good insight into all that you go through on a daily basis.  You know better than he will ever know what effect your MS-the weakness, the vertigo, the fatigue, etc., as well as your struggle with depression, have on your daily life.  

And people don't just suddenly become lazy any more than they just suddenly become dishonest or selfish, especially after having worked hard all their lives like you did.  Lazy and fatigued are not the same thing, and anyone who knows anything about MS knows that the fatigue from MS alone can be overwhelming.  Add some depression to that and it's even more overwhelming.  

You are a kind person and a generous person.  Just because most doctors are not what you are doesn't make them right and you wrong!  The problem is, most kind and sensitive people put too much stock in what others think of them and say about them, and let it define how they feel about themselves.  I know because I, unfortunately, also do this all the time in my life with regards to others.

You are not wasting your talents on this forum, Quix, you are sharing them in a way that most doctors never will simply because most doctors will NOT get a disabling chronic disease which is life-altering in the prime of their medical career, and most doctors do not feel the need to share their knowledge and expertise with a patient, but instead hold that knowledge over their patients' heads in an arrogant and elitist fashion in order to let the patient know just exactly who the doctor *is* and who the doctor *isn't*.  And, as we all know, that unapproachability patients feel with regards to doctors does not facilitate a rapport and communication and so does not exactly facilitate getting answers as to what is wrong with our bodies.  You are NOT of that ilk but are instead generous with your knowledge and time.  It is unfortunate that your doctor cannot see the validity of what you are doing on this forum.  You don't need to be in a typical office setting in order to be of use to sick people as a physician.  Some doctors are out in the field working for human rights organizations, some are working at free clinics, and some are doing what you are doing, volunteering their time and knowledge online to those with serious questions and concerns.  Your doctor should try it, himself, some time--maybe he would like it (or maybe not :).  

Just as an aside (and maybe it will make you laugh), my former psychiatrist (whom I actually liked a lot but haven't seen in about 12 years) decided he no longer wanted to practice medicine when he was in his 50s and became a professional poker player instead.  He took lessons from one of the "poker greats" and started traveling all over the US going to poker competitions.  So, if a healthy 50-something-year-old MD can do this and not be deemed/labeled "lazy,"--and I say, go for it--you only live once and life is short--, then certainly a 55-year-old woman doctor with MS, vertigo and depression should not be chastised for no longer working at a very mentally and physically demanding (if you are not well) profession such as medicine.  I mean, what does he want you to do, go work part-time at McDonald's so you will be "productive"??  Aren't your talents better spent sharing the knowledge you learned in medical school in whatever capacity you can?  

I hope you don't beat yourself up over his unenlightened and judgmental comments.  Doctors only see a snippet of your life when they see you for a few minutes every few months or so.   They only know the little that they see right in front of them at that moment in time; they don't know the whole of what one deals with in his or her daily life when they have a chronic illness to contend with.  
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Dear friend,

As the others have so wonderfully stated, you are such a blessing to us and God has brought you into our lives. You have every right to feel useful, helpful to so many of us. Just the other day, I shared with my family and friends how helpful you have been to me and even took the time to share info about my grandson that was so helpful and sincere. I printed that post to give to my daughter. You may not be in the field as a pediatrician but you are a doctor who has shared from the heart to those who feel abandoned, feel desperate, need insight. You are a shining light.

Thank you for all you do for all of us.

I am sorry that the md did not support you. Unfortunately, many of us have faced this type of doctor who does not think before he speaks. You have given us good counsel when that occurs... move on and get one that does support you.... maybe you should consider that as a possiblilty.
GOD BLESS YOU.
Frann
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Argggg I get so exhasperated at these doctors. Why would anyone think this is how someone would want to live!! Are they that blind? (I could add a few other fitting words but I won't). Why can they not see you are not the person you once were, you are not yourself, see that, and try to do something about it. Is that not what they 'swore' to do!
Quix I feel so badly for you, how to survive all this with sanity intact. You are such an enourmous help to everyone here. You should be proud, we are very thankful to have you.
Jazzy
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Although I'm new to this forum, you have already had a positive impact on my situation.  The physical symptoms for me have not approached the mental anguish, and I now feel better enabled to become my own advocate.  Thank you and I pray you'll have better days ahead.

Sherry
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Hopefullly Quix , you being part of this elite group can come to terms with his insensitiviy...I feel in  simple terms that Doctors have egos; rather BIG egos (not all of course!) and it seems from what I read over and over again, when a doctor "can't" figure out what's wrong they tend to become flippant, impatient, tell you it's all in your head,etc!

btw, where's the professional courtesy?

We're all pulling for you,,,,you're very well like here. and I'm sure you know that it Counts!

September's Public Health Alert is another very informative issue. This might apply to you, and geez, maybe it's time you find something for you.  publichealthalert.org
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Quix, as being a new person on this forum, I want to thank you for your insight and compassion in answering my questions.  In the past year, I have met more than my share of uncaring, arrogant physicians, even ones who have told my wife she would be better off without me holding her back in life.  You have inspired me this week and helped me to think that maybe there are still nice people in the medical profession.   Thank you.  Your knowledge and empathy are priceless to this forum and all the hurting people with this horrible disease.
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You are loved...you are defined here!!!!!
JonM
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I'm sorry for what you are dealing with. You mean a lot to us here (isn't that obvious?:))

What you are doing here is important!! It doesn't matter what anyone else thinks. I think all doctors should experience a chronic illness if only for a short period of time. Did you ever see the movie The Doctor? William Hurt plays a no it all doctor who becomes ill. In time, he changes in realizes how wrong he's been about treating his patients.

I can relate to your PCP not getting things. The last few times I've seen him have been in the late afternoon when I am totally exhausted. It seemed as though he thought I was depressed. I'm not just have periods of extreme fatigue.

Take care of you for now. If that means you need time away from all of us, well, we understand.

IUMOM
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Just wanted to keep this near the top so when you are able to catch up you would not have to search too far.

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hi quix

i posted a msg very soon after you posted yours, somehow it didnt show up, just to say that i really hope your feeling better at the time of reding this and no matter who tries to pt you own, do you best to bouce back because your the so much better person. have faith , we all have bad times all we can do is carry on, please do, have faith in yourself your a brilliant and thoughtful person

harrie
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Pay no attention to that man behind the white coat.  Sounds like HE's the one with the swelled head and that his practice is all done with "smoke and mirrors."  I won't even dignify the way he treated you with a rebuttal.

Now, enough about him.  Let's talk about you.  I echo all the sentiments here of your value to the people here, your dedication to using your knowledge, education, and experience, and not just sitting back and resting on the laurels of what I have no doubt was a successful practice.  

I have the utmost respect for (good) Pediatricians (and I have no children, so it doesn't come from personal experience).  It comes from realizing that you must have much better diagnostic skills, and be more observant than a PCP.  Many of your patients (especially the very young ones), can't tell you how they feel, they can't give you a history, in reality, they can't do much to help you help them.  

The skill you developed as a Pediatrician - to see and hear beyond the ability of the patient to present symptoms, or give a good history, is what makes you so very good at what you do on this board.  You use your diagnostic instincts and the drive to research and find answers to a degree most physicians don't take the time to do - why?  It's NOT to feed your ego, and certainly not your bank account, but because you define what a physician should be.  And are continuing to be exactly that to the people here.

A physician should be someone skilled at finding answers that help people understand and deal with the disease, or symptoms of a disease, that plague their lives.  We come to you with words typed out on a keyboard.  You can't see us, or hear our voice or examine our bodies - yet your insight is AMAZING!  The questions you ask, the observations you make, are all those of a physician who has extremely keen diagnostic skills, and continues to use them and to develop them.    

I understand that the insensitivity of people, especially those to whom you are vulnerable, can make you feel frustrated, humiliated, and like you gave up.  But the truth is you have done anything BUT give up.  You are fighting a good fight.

I love your screen name, and I understand how you must feel like you are flailing at the wind, trying to make sense of your day, trying to weave your way through the disease, trying to keep your life vital.

Please know that each of us here consider you to be a success, right NOW, not just in your previous practice.  You are succeeding in helping people in a way that is much harder to do than when a doctor sees a patient in the office.  You are working hard girl, each time you get on this board.  You work hard to work through the symptoms of the disease that make it difficult to read, to write, to think clearly, to stay up long enough to complete a post.  YOU ROCK! ! !  I can't say it enough.

As a matter of fact, I have told many of my friends about you - about how you give of yourself here, and how very valuable you are to the many people with questions and fears who are looking for answers.  

Please know that each of us here want the very best for you - however that plays out.  If that means you need to take a break from the board, then take a break.  Take a vacation, if you will, and feed your soul.  I know helping people feeds your soul, but I'm sure it takes a lot out of you as well.  

Know that we support you, and love you, even though we've never met face-to-face, I think we've met heart-to-heart.  And our hearts thank you.  You don't have to feel "up" to be here.  You don't always have to be the strong one.  You can bring us your pain.  Sometimes we need to be able to give something back to you.

We will hold you up in prayer.  We will speak to each other of the wonderful things you have done for all of us.  We will love to hear from you when you are able.  And we will respect you for taking care of yourself, as well as for everything you give to those on this board.  

Thank you for being so transparent, and for allowing us the privilege of telling you how much you mean to each of us.  

Much love to you.

~Elaine
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Oh, my...I have no words for what I am feeling reading your words.  Thank you so much!  You have touched me a most profound way.  I printed all this out and it will, indeed, sustain me when I swing low as I did a couple days ago.  That lability is more the disease, I think, than the doctor.  My family felt that he was just being droll with his fat head comment and I am just too tender to perceived criticism.  Thank you, thank you.  What a wonderful bunch of friends.

I have to share something ironic and soemthing else funny.

IUMOM mentioned a movie caled, "The Doctor." with William Hurt.  It's about an arrogant surgeon who gains humility and compassion when he is forced into the patient's role.  He then takes what he learned to the medical school to impress upon medical students the need for empathy, kindness and patience.  That movie is based on a true story.  The doctor was in practice in my city and is now retired.  His sons and a nephew are currently in medical practice.  IRONY ALERT!  His nephew is  my old, "evil" neurologist, and has the poster for the movie right in his waiting room.  When I wrote him my nastygram, I told him that poster was false advertising.

FUNNY ALERT - My new kitten is a 3mo rescue.  Her name is Clyde.  She still wnts to nuzzle and nurse when she's sleepy.  This morning she was nursing my mom's neck - and gave her a hickey!  If that doesn't put you in a good mood, what will.  So my mom and dad have to return to their retirement complex and explain mother's new.....uh....lesion.  What fun!

Again, you are all so special to me.  I'm back, let's Rock!  Quix
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Some dr's can be such jackasses!!!!!!! for lack of a better word;)  I'm so sorry that you've been put through so much and and feel that no ONE should have to FIGHT to feel better! It's ridiculous that certain individuals in the medical profession have found it worthwhile to belittle so many that are merely trying to understand what's happening to them!!  I used to be a very laid back, easy going person and have found myself becoming more and more defensive the past few years for fear of being deemed "easily disposable" to these particular physicians.  It is a sad state of being when you have to battle with medical professionals for your health!!  

Hang in there Quix!  I don't know you personally, but I've read your posts and clearly see just HOW important you are to the many people that have grown to care for you as a person and respect your advice/education!!  There need to be more people in the world like you! :)  

I'm sad to hear about the overwhelming fatigue!  I don't really think that people understand this is not your "ordinary" exhaustion?  I hate it myself that at just 35 yrs old...it takes everything out of me just to keep up with the laundry on any given day!! I can remember just a few years back being able to clean the entire house, do laundry AND run after the kids all day!  

Hang in there:)
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sorry to hear about your troubles...please know that it is only people like you who can actually understand what some of us are going through.  Some of your posts sound so much like me it is scary.  I do not know what is wrong with me but whatever it is...i  know exactly how you feel...except I am not middle aged (not yet at least)...but sometimes I feel like an old lady (not that there is anything wrong with being opld)

It sometimes makes me feel very hopeless when i have to be helped to the couch by my husband after vacuuming 2 rooms in my own home and not being able to sit through a church service without feeling like my head is going to roll off of my shoulders...I guess st least you can be glad you have a reason.  At this point people continually ask me..so what is wrong with you...and then of course everyone has there own theory of what is wrong with me or what medicine i should be on or what foods i should eat or herb i should take, now it is just becoming anoying=(

how can a 32 ...wait I think I am 32...I can not even remember my age anymore...the other day I even talked to my husband about going to see the fourth of July fireworks...he looked at me like I was insane...I did not even understand it was because it is almost September...HELLO...anyone home.  Anyway, I understand, we understand and I am glad that you understand me!  i am glad to know there is someone else out there who needs a nap after doing a load of laundary!!

take care=)
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Oh sweetheart, I started tearing up when I just read your posting.  I have been out of town for a while and just got in today, so I haven't been on the board at all.  I want you to know that I am giving you a big hug right now!  There is no advice I can give you that hasn't already been lovingly given.  I just want you to know I am here for you and completely understand what you are feeling.  Stay strong and know that you are loved!

Jenn
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Yea!!!!!!!!!!!!!!!!!!! You're back!!!!!!!!!!!!!!!!!!! You sound sooo much better!!!!

Here's hugs to you))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))!

Much love and support,
Doni
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I've only posted on this site for two days, but I can tell your response to me helped tremendously.  As I read through the boards, you have found a calling for all of us, no matter where we are in the process, the disease, the complete unknown for many.  It is nice to have someone who does have some medical knowledge that can make us feel human and not just a patient coming through the door.

I have been very lucky, that I'm moving through Dr's fairly quickly.  Though at this time I'm not sure if this a good thing or bad.  Good in that I won't sit in limbo-land for many years, but bad in that it is apparent there is concern about my problems.  I can't imagine the pain that you and many go through wiht Dr's who just dismiss the issues.  

I guess I used to dismiss my own issues thinking they weren't important, a Dr. wouldn't take me seriously.  Fatigue=hormone out of whack even though it came back normal.  Now, I'm taking note thanks to you and this board.

Try and keep up the fight, and know there are people on this board that completely understand.  It is truly one of those times when one has to walk in your shoes or follow your path to understand.  Like I said in my post, while we don't know what my problem is, it is a serious issue and I can't take another well meaning friend telling me not to worry, they are sure everything will be fine.

Big hugs!
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Yay Quix, I am so glad you are back! Big group cheer and hug!
Omg that is major ironic with the doctor's nephew. I watched that movie and loved it. I swear if I was a doctor I would lay awake at night thinking about my patients and wondering if I was missing something, some way to help them or what was wrong with them.

Quix am so thankful for your insight to my situation and your help. I think we all feel like we are flailing about treading water and need rescue. Your words were an huge help to me. Thank you so much.

I am amazed how I find my thoughts being spoken out by others here on the forum. (big smile).

"I used to be a very laid back, easy going person and have found myself becoming more and more defensive the past few years for fear of being deemed "easily disposable" to these particular physicians"
Jules that is me to a T. I dont' like how this whole thing is changing me. I want to be the person I was.. not this unwelcome, altered version of myself.
My mind is styrofoam today, I hope I am making sense. I can't even think how to spell and have to keep looking things up. :(   Lord I can't think straight. There was a ton more I wanted to say, but it has left the white matter diseased building. Lmao  (have to laugh or cry)

Jazzy



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Sorry about the empty space above.  Pressed the wrong key as typing in the dark.

Quix, perhaps you can borrow my doctor, one of whih is not an ms specialist and she is very young which would imply she she does not have extensive knowledge about ms.  Well, she does not.  But, boy she is very compassionate and supportive.  Even though she can not do much for me other than prescribe the medicine my consultant asks her, she has asked me to see her as much and as often as I like, if it helps me.  Yes, I was only dignosed last week only and talking does help enormously.  

Every day is not a good day for everyone,perhaps tomorrow will be a better day.  I get the feeling all those people that replied to your message really need you (incl me).  Your knowledge and encouragement gives people strengh and motivation.  

Janey1
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So sorry for "stupid" Dr's --that is my word of the day--stupid.  "Stupid is as stupid does" LOL and the did stupid.  
You are like the elastic for us, even the short time I have read and posted here, not dx myself, you hold it together, so many people appreciate and need you.  
Here is to hoping tomorrow is better for you.  Wish I could make it so.  Hope maybe I made you laugh.  

hugs,
Tracy
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To quix,
    I know that Drs. have to stay detached or the emotions would get in the way of them preforming there job, but it kills me when they make comments about something they have never experienced. For someone who has never felt true fatigue you have no idea what it is like. Even well meaning Drs say stupid stuff.  You are great.
                                       Alex
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My sentiment echoes everyone else's here, Quix. When I came to this forum I was scared, worried and confused. You were one of the first people to greet me and help me understand this disease and helped me regain my focus. You helped give me hope for my future. You put so much into helping everyone here and I hope you realize how big of an impact you have. My heart goes out to you and if there were any way I could help carry your burden, I wouldn't hesitate. Please take care of yourself; you're the only Quix we have!
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hi folks,
i just want to point out that this is a really old post from 2007 - you're still welcome to post your comments.

Lulu
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I appreciate you Quix.  You have helped me an aweful lot.  Go take a nap.  I will be.
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Quix -

You have blessed us.  

What has he done?

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i couldnt figure out why the post was so old, because it is old !

meg
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Quix,
By reading the number of responses to your post, I think it wise to see just how loved and respected you are.

When I went to my last Neuro visit in St. Louis, I was so discouraged.  That Dr. was so belittling and judgemental that I was severely depressed for several days.  She made me feel like I was of no value.  I just kept praying that God would help me remember that I am who He has made me and that my value is not based on some falsehood that others believe.  I know that my health issues are real and I know my limitations are real despite of what she or others may believe.

You know your body.  You know what you are capable of.  You know what you once did and the energy that it took to do what you did.  If you are unable to maintain that level of energy then you aren't being lazy and you haven't given up.  Your body just isn't allowing you to do what you want and what it once could.  

I do feel that God is using you in a different way than He once used you.  I hope you will not let that PCP define your life by his/her false knowledge of yourself.

You are wonderful!
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Quix,

I'm so sorry that your dr made you feel bad.  He had no right.  I thought doctors wanted to be doctors because they wanted to help people and make a difference?  You have definitely made a difference to me!  You don't know how many times I have read and reread your health notes.  You are always here for everyone and I look forward to reading your posts.  You are a true blessing!  God bless you and I pray that tomorrow is a better day for you.
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Oh, wow, guys, Thank You!  

You'll be happy to know I have recovered from that incident and "turned" that PCP into a great ally.  He still has a personlaity like a saucer of cold pee, but we work okay together,

Quix
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