View Full Version : The Emotional Price
05-13-2008, 10:28 PM
First, let me apologise for posting one maudlin post after another. Though folks generally don't seek out this kind of site until they are feeling overwhelmed, I feel a bit bad, not enough to stop mind you, joining up and crying all over everyone.
One of the worst things about SLE is the road to diagnosis. A near second is everything that comes after. In my case, only my GP will give me the Dx. The "experts" refuse to grant me the SLE lable until I magically produce a positive ANA, even though I know and they know and anyone with knowledge of this evil thing knows that positive ANA's, thugh handy, don't always or even often pop up in SLE patients. That's why it is so hard to diagnose... tests just don't tell the tale, history does.
So... evne though I suffer nearly everything my mom does, who has been graced with a Dx, I have no 'expert' treating me for anything more than simple arthritis. The drugs are about the same so Iam just going with it for now.
I see my rheumy's eyes glaze over as I tryt to get him to understand what I am going through.
I've had a neurologist all but call me a liar.
I kept a diary of woe for a time, to help one rheumy see my dy to day history... she never even bothered to flip the cover.
My GP is handling my pain meds reluctantly because my rhemy refuses... I'm fairly certain he thinks I am just a drug seeker. I had to drop my plaquenil due to night terrors. this was over a month ago, and I haven;t contacted my rheumy aboutit because I just don't want to deal with his distrust and impatience. The daily pain is somehow preferable to dealing with his disdain. My concern for allowing the damage to my organs and especially my CNS to roll along unabated is somehow secondary to not wanting even one more experience of being treated like a junkie, fool or paranoid.
I had a friend who is a nurse on a seizure research ward admit to me that manyt docs resent Lupus patients. I think he is correct.
At least three times a week something happens to me that makes me wonder if I'm not about to die but I just ride it out. Sometimes it is sudden massive dzzyness, sometimes it is true double vision (terrifying the first time around), sometimes I catch myself falling for no known reason, just happens.
The sensations and experiences I have learned to simply accept and wait out... any one of them would send a man racing to the ER in terror... but after so may trips with nothign to0 show.. well, you just stop going. My last trip was the true double vision... it scared the bejeezus out of me... had an opthamologist confirm my left eye was jumpy, said y 6th nerve was temporarily weakened.... perhaps from a mini stroke... they tested found nothing obvious (I dont have to tell you folks the inflamation in the brain from lupus is subtle as canbe and won't often show even with a Petscan) and just snet me home with no answers and, no real interest on their part in finding answers.
I know this attitude will be the death of me one day, but i can't help it.. going to the ER only thickens my medical records with shrugs on paper... at best.... accusation at worst.
I don't give up... won't give up... but I'm not fighting anymore... all I get is more stress and a bigger flare... its not like they can stop the thi9ng.. or the relentless, endless pain.. or give e back the intellectual capacities that I have lost, not that their egos will aloow the possibity that this former technican could have ever claimed greter intellectual power than they themselves posess....
i thinl lupus hurts their egos.... hard to diagnose, impossibe to fix... can only treat the sumptoms with medicines nearly as detrimental as the disease... i guess id resent it and its sufferers as well..... WE are modern medicine's failure and they dont like it...
I'm rambling..... anywya...the emotional toll is this.... despite all my certainty, despite my expeimentation with various situations to see how my body reacts, such as being in the sun, despite the truth I kow in my poor aching bones.... I still harvor doubts... which causes the experimenting, becausr thats what i do.. how i think.... but the docs hae it and think it6 proves im a nut...
i findmyself woderig if i am teuruly part of the sentiwnt world.... oh wow.... too tired to type well.... gotta run.... jusat.... let me know if any have had the same self doubt.. the same experiences with docs...
05-14-2008, 12:03 PM
I'm reposting this, sorry it came out in such a small font the first time. Dont know what happened. :)
Hi Commonsns1, (Bruce)
I'm a newbie here too. I've had Lupus for 26 years, diagnosed at 18 years old, right out of high school.
I read your post and my heart aches for you. You are so right, the emotional price of this 'distaster of a disease' is huge. It is overwhelming with the ups and downs and the loneliness, and the anger, and the frustration. The feelings that no one is listening to what you're really saying, no one cares that you're hurting. The emotional part of this disease is just as draining as the physical things we go thru.
I have to agree wholeheartedly with your statement that "the worst thing is the road to diagnosis, and a close second is everything that comes after". Boy, you hit it on the head with that one. That sums it up perfectly.
Thru the course of my Lupus, there have been times I've had to be on narcotics for the pain. Like when my hips were deteriorating and I needed to have them replaced. I was only 22 or 23 years old, so my Orthopedist wanted me to try to put it off as long as I could, cuz they were having some complications with the early hip replacements and the glue they were using. He told me that they were making great strides in new technologies and if I could hold off, he felt it would be better for me. Of course, he told me that we would do it at anytime if my pain was too much. I was young and very scared of having my hips replaced and going thru such a major surgery, so I eagerly agreed to hold off. Then a few more years down the road the pain got so bad I had to start taking strong pain meds to get thru my day. Then a few more years go by, and I had to take 2 strong narcotics, round the clock, to stay on top of the pain. When I finally worked up the courage to schedule my first surgery, I was surprised with a pregnancy. In order to make it thru the pregnancy with bad hips, I was weaned off the oral narcotics and put on a continuous epidural that delivered low dose morphine directly to my spine and hips, so baby wouldn't be born with withdrawals. Long story short, after the delivery, I went back on oral meds. It took me 4 years to build up my strength and gain weight before I could actually do the first hip replacement. The next year, I did the second one. Thru all of this, I experienced, with every new Doctor that got involved, the humility of being accused of abusing pain drugs. I was labeled a drug seeker. Even though I assured all my Docs that I wanted nothing more than to get off these drugs and have my life back, they did not trust me. That hurt me so much!! I finally found a Primary Care Doc that was wonderful. He listened to my whole story, took "all" my history into account, and helped me to recover from my surgeries and slowly, very slowly, wean me down off the pain meds. I told him how afraid I was of suffering withdrawals when it was actually time to completlely get off them, and he totally understood. He allowed me to cut back on one pill at a time, very slowly over six months, and made the taper so slow that I barely noticed it. It made a world of difference in my recovery to have a compassionate, caring, Doctor that listened to me.
I understand completely how awful it feels to have Docs, nurses, pharmacists, etc. think you are an addict. How humiliating. It hurts so very much. It's an awful feeling when you know that's not what you are at all. I am so very very sorry that you have to endure this.
I'll try to finish this up. I also understand the part about "not fighting anymore". I also reached that point. Not that I gave up the fight against Lupus, I just ran out of energy to have any "fight" left in me. I was so very tired and frustrated and sick of battling the flares, that I just sort of went into survival mode. I just tried to maintain. I totally understand the feeling of no "fight" left.
One last thing. It always amazes me that Docs are so reluctant to diagnose Lupus in someone, even when other family members (esp. Mom) has been diagnosed. It seems like a no brainer to me. What's the big fear with diagnosing someone? It puts a name to your problem and then you can move forward treating it. We know (Docs included) that you may never test "positive' with their diagnostic tests, yet you have this history of symptoms and problems. Why not assume it's Lupus and work out a course of treatment. If only Docs new how much added stress they put on us, by holding back with the diagnosis.
I hope that you will find some relief from your many symptoms. And, again, I'm sorry for all you're going thru. I'll send a cyberhug your way and some smiles to cheer you up. :lol: :lol: :lol:
Hang in there, and take care. I hope today is a better day for you!!
05-14-2008, 12:53 PM
Thanks, Lori.... that helped... if only doctors would visit these boards and see who we really are, and see our pains, fears and hopes.. maybe they'd be a little less angry with us for having this dsease.
I'm lucky to not have to speak about lonliness. I have a very ovign wife and two great boys as well as a daughter we hav casually adopted out of a bad home. There is pleanty of love around me.... without it, I don't kow I'd be here typing this.
I avoid going to the docs as much as I can... well, doc... i avoid the so-called specialists and experts completely.
Here's an example of how my former neuro treated me... I am left handed, though my right hand has always do the grunt work for me.. left for precision, right for coarse, as in sports and weapons... I love to shoot, i love spinning a staff or nunchaku, i can throw a mean blade... but only with my right. But, if I attempt painting or wirting, my right hand has the skill of a drunken 5 year old. his has been the truth all my life up until a few years ago... until I had to use my right hand to write down some numbers as my left was busy holding something.... and they were legible!
I played with htis, as is my nature, and discovered my right hand had gained at least 85% of the skills my left hand has always posessed. While waiting in the room, I wrote a sentence, first with my left, then with my right, for the doctor to see.... he siad they look almost exactly the same.. but he said it not in confirmation but in accusation, as though I wrote it all with my left... he then slid the sheet aside and proceeded with the rest of his exam.... treating me like a liar. You should have seen him when I told him my former IQ and how, now, no matter how many times I take the same test, I score a full 30 points lower. He was insulted, asked why, if I had had such a score, I hadn't done more with my life.
And hasn't changed, really, from one 'exopert' to the next.... distrust, suspicion, disrespect....
So now... here I am, confident that something is happening, that I am getting MUCH sicker and that, perhaps soon, I will no longer be able to work any shits, and perhaps may have to give up my fledgling business, and maybe....... well... i get so tired, confused, dizzy.. my gaitr gets sloppy and the pain that use to be a constant but manageble 2 or 3 minus the flareups and occasinal jumps, now rests at a 3 or 4 or maybe 5 at all times.... well.. i wonder if im not in danger.... but i sit here.. wby? because I know, i KNOW, that i wont get help, real help, until the monsters hav eno coice but to believe me... so i wait... endure... and hope in some macabre way that it will flare so badly that i will finally get the help, the attention, that i need....
and i worry... about my family.. about my kids having to hear me cry out when i move, about my wife cryin over me while i sleep as i know she does sometimes, about living.... my wife has worries of her own.. she was butchered by a surgeon and the final, 2 year long series of asaults on her abdfomen to save her life finished with the removal of her abdominal wall... all of it... and she is heavy... so her back pain is pure and unceasing... so i dont dare tell her how scared i am right now... she doesnt need it....
my youngest said to me once the winter finally let go "daddy, now that its gettign warm, does it mean you'll be hurting a lot mor with the sun and all?".... this was his first thought about spring.... how wrong is that?
ok... im sorry.. i'll stop the pity train now.... thanks again for listening... it helps.... and the replies assure me im maybe not crazy
05-14-2008, 01:12 PM
You are absolutely correct about doctors dismissing us and not believing our symptoms. With women, they want to tell us that it is all in our heads and that we are being too emotional and causing our symptoms ourselves and want to send us to psychiatrists etc.
With men, because lupus does not affect men as often as it affects women, they accuse you of being a liar, of being lazy, of inventing symptoms for some sort of macabre attention.
Then, what they do is to brush us all aside because, as you so intuitively discovered, Lupus is THEIR FAILURE!
Bruce, I think that you are correct, you are ill and it sounds as if you are experiencing some serious CNS involvement which cannot and should not be ignored by your doctors. Somehow, I think that you need to find a rheumy who takes his job as a "healer" seriously and who will give you treatment for your symptoms which are, I believe, quite serious. I know that dealing with these self-righteous and uncaring doctors have caused you extreme stress (not to mention what it is doing to your emotional well being) and I don't blame you for not wanting to deal with them. But, you need a doctor Bruce! You need a doctor who will take your symptoms seriously and who will prescribe treatment to help you. Your fight, right now, should be to find a responsible doctor, to demand that you be taken seriously, to demand that they run the appropriate tests and that they provide adequate treatment. Do not sit down and take their abuse any longer. As a patient, these things that you are demanding are YOUR RIGHTS...not something that they have to get permission to do, it is what they are SUPPOSED TO BE DOING, AND THEREFORE, YOU ARE DEMANDING THAT THEY DO IT. They are to keep their opinions about you to themselves if it is not pertinent to your treatment and they are to treat you according to YOUR STATEMENT OF YOUR SYMPTOMS. That is what they are supposed to be doing. You are not asking anything extra of them, you are just demanding that they DO THEIR JOBS! ALSO, it is your right to get second opinions or change doctors until you find one who will do his/her job. Don't avoid doctors, this can only be detrimental to you and your health. Stand up and fight for a GOOD DOCTOR! Doing so will make a world of difference in your health! So, please, please, do this for your self and for your health!!
Peace and Blessings
05-14-2008, 01:54 PM
Head hug. I understand your emotions. I also have learn my emotions, my state of being does change IT's existance in me.
I find if I am armed with confidence and knowledge then I don't feel like I am making it up, trying to obtain drugs or nutso when at an appointment.
I find in an doctors office, the room without a clock, old wrinkle magazine piled near your chair with Bertha Jones on the address label, bio boxes filled with syringes.... we usually feel vulnerable, defensive...especially when we find we are somewhere in the process of finding a diagnose, a diagnose unlike a cold diagnose.
We prepare ourselves to defend, rehearse our words in our heads. We forget what we wanted to say, it doesn't go according to plan...we leave crying, we leave angry. How often do we feel...okay, it is going to be alright? Rare? Probably.
I find if you enter the room with poise and self assued you fair better, as in how you will feel when you or when you don't get a diagnose.
I think doctors are hestitant to make a diagnose in the interest of you regarding insurances. Life insurance, new health insurances....
And of course there are some who are just arrogant numbskulls...or just looked at the pictures while in med school and didn't bother to read. Or advanced their knowledge by never picking up a book since the got their MD status..
I know the importance of having a diagnose, it settles our thoughts, makes us want to say, Okay this is what it is, now lets fix it. As if it is cut and dry, black and white. IT has so many gray areas....we still muddle through diagnosed or not.
Doctors do have guidelines, a criteria for diagnosing...4 of the 11. Do you know what they are? I can post them for you... It is an accumulative disease.
Despite not having a diagnose, are they treating your symptoms as if you do have IT? Can you seek out another doctor?
If so, don't mention your other visits, as if you were starting from scratch. Not all rheumatologist specialize in SLE....keep that in mind. If you have to travel an hour, do so.
Or have a meeting with your previous Rheumatologist and tell him the feeling you are having about your visit, about your diagnoses, the treatment pain...
Some offices are strict on time..some every 15 minutes...when making an appointment request a longer appointment. They can bill your insurance as a High Visit...
When you feel they are not beliefing them, ask them if that is indeed what they are thinking.
Are you doing all the do's to keep your Lupus at bay? Mild exercise, swim, yoga,rest, proper nutrition, avoid the junk...anything in a colorful wrapper or that is in a bag with grease spots on the side. Avoid sugar and simple carbs. Eat for your health and not the taste bud...read about Lupus...adjust your life a bit...
Just a few of my thoughts...know we know how you feel, been there, did that, still doing that...
Breathe and stop doubting yourself...take a deep breathe and regroup tomorrow, make a plan for your health...diagnosed or not..
05-14-2008, 02:50 PM
I've been toyed with for two years now. I have NO faith in my rhuemy who shall from this moment forward be refered to as stinky face.
I put all my faith in my family doctor. She has tried to get me refered on to another rhuemy but I got short listed to another icky one who she advised me not to see. She wants me to stay with stinky face for a bit, and she'll try for another rhuemy again later.
Got to love our medical system grrrrrrr. Fortunately I'm not in too much of a mess right now. And my family doctor is watching my monthly blood work.
There are times I'm at a lose as to what I should be doing next. Right now I'm waiting to see what happens with my next appointment with stinky face. She might give me the boot when I'm telling her to stuff the plaquenil. It's not working for me and I have no intentions of taking anything else unless she's going to run some proper tests.
I'm tired of her shoving me on medications when she doesn't even bother to look at my blood work. She's NEVER sent me for a scan which is why I went to her in the first place. She hasn't tested my rash...she told me bold facedly that she (hey wait is facedly a word?...is now heehee) doesn't believe that "lupus" is a proper diagnoses for anything...that it's a convient label that doctor's use when they don't know what is actually going wrong. Grrrrrrr
I don't likes her...can you tell?
Hugs and welcome hope you and your family are having a great day dispite everything :)
05-14-2008, 05:51 PM
o wow. ive never really thought about how doctors think of lupus patients beyond ruling us as not really sick. i would never have thought that because of how the disease is they have a hard time resolving it, and it makes them feel useless. but then again. ive had too many bad experiences to think positively of most of them now.
on monday i go to brain mri. the previously done ct scan showed some deterioration as well as a portion thats enlargin. my vision is now apparently being affected by the enlarging part. but my neuro is apaprently not convinced anything is wrong. but my opthamologist (the second one i've visited) refuses to treat me for teh glaucoma and astigmatism without further details about the brain issue. im not sure, but does all that make sense? the neuro practically told me i cant be in as much pain as i say i am. i dont know, but the fact that i cant walk, or sit, or grip anything, the debilitating pain i know im experience when trying to physically acomplish even the simplest of activities isnt enough? she implied i couldnt possibly be experiencing what i say i am even tho i winced at her ecver touch in the physical exam. but she still approved the mri. i wanted it done, to soothe my own concious. so we'll see.
then theres ma regular doc/rheumy he says he would just adjust my meds and the dosages .. and see what happens. is convinced something is wrong, but just basically says its all the lupus , therefore more drugs. i have meds for b/fast...lunch...and dinner. still my eyes ache, still my vision is blurry, still i can barely make out words on a page.
still my memory fails me, my processing and focus is not like it was. then there are the physicaly issues. its too upsetting
05-14-2008, 08:01 PM
Hello all, I was reading some of your posts and as frustrating as it all is, it is nice to hear that I am not the only one having this problems with specialists acting like I'm a hypochondriac.
Fortunately I have an awesome GP, but my rheumy (who I travel to the other side of the state to see) thinks all my pain is from fibromyalgia. She even wanted to diagnose my with FM but I have had the dx for as many years as the lupus!!! I haven't been back to see her and both me and my GP are about to the point we are pulling out our hair its so frustrationing.
At best I get "well, you are stuck between a rock and a hard place". I'm sick right now and only getting sicker. My lungs and heart are my main concern right now. And though I am struggling to breathe, I am not sick enough for them to do anything for me. In other words until my kidneys fail or I have a heart attack I just have to continue being miserable.
Thanks for being here, its nice to know you aren't alone.
05-15-2008, 01:49 PM
Bruce, I'm so sorry you're experiencing the diagnosis nightmare. You have a lot of company, as you can see. You deserve better treatment by your doctors - we ALL do - and I hope you can find the strength to demand it. Seek out a doctor that really knows about autoimmune disease. I don't know where you live, but I know there are specialists is many parts of the country that focus exclusively on autoimmune diseases.
Find out if your state has a Lupus Foundation office. They may have good info for you on medical providers. Also, if you have a local support group in your area, you might want to get involved. Someone in that group could have first-hand information on doctors in your area that really "get it." And wouldn't that be a nice change?
I'm very happy to hear that you have a supportive family. This illness is so hard to manage, but managing it alone - without support - would be much harder.
I hope you'll keep us posted on how you're doing. Everyone here is going to understand what you're going through, and many will have similar experiences to share. I don't know what I'd do without this 'family.'
05-17-2008, 10:27 AM
I am sorry to hear about the problems with doctors. I think it's universal though I was very thankful that my GP listened to me. You need to demand a better doctor.
It's great that you have a supportive family. Wow, you are truly blessed.