New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/26/2011 8:31 AM (GMT -6)   
please delete

Post Edited (tfofd) : 6/10/2011 6:43:22 AM (GMT-6)


Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/26/2011 8:55 AM (GMT -6)   
Lupus is such a tricky illness that can look and act so differently from person to person...plus I think when we get doctors from different medical schools or who have been educated in different decades they simply have learned different things. Plus the on-the-street education they obtain in however long they may have practiced.

After 10 years with this illness (diagnosed & undiagnosed a time or two), most of which has included reading here as well as reading everything else I find on the illness, I'm convinced of one thing -- the diagnosis is *not* the biggest issue -- the thing that is *really* important is a rheumy who is capable of treating the symptoms and keeping them under control.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/26/2011 8:18 PM (GMT -6)   
Tfofd, that is my dilemma too. Without a diagnosis they won't even give me steroids (which are highly effective with me) and the last ER visit the doc said that my inflammatory tests were "fine" (yet my fam doc said my RF's are elevated) and I certainly am swollen enough and bruised enough for the eye to see! I am also frustrated that this "diagnosis" is so important when what I need is just simply treatment like Lynnwood said. If they would just treat the symptoms at this point I think I would be satisfied...  Good luck!  Nicki

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/26/2011 8:55 PM (GMT -6)   
I respectfully disagree with the "but no rheum..." statement. I have personally visited 3 rheumies who are quite comfortable prescribing both plaquenil and prednisone before they have fully committed to a particular diagnosis.

There are pretty much 2 distinct classes of rheumies - those who will take care of the patient, dx or not, and those who have some mis-matched set of rules they seem to make up as they go along (which seems to involve ignoring the patient's symptoms as long as possible.

Auto-immune diseases are not for the timid, sometimes we really have to search high and low to find a doctor who actually is brave enough and princibled enough to do the right things.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/26/2011 11:13 PM (GMT -6)   
Thank you Lynnwood! I am frankly terrified of this rheumy visit coming up (my first)... after the experience I have had with so many other doctors who just don't seem to believe me or care or something and all--and I am pinning so much hope on him! I am hoping so much that whether or not he can diagnose, at least he will put me on something that will relieve the terrible pain and fatigue I've had so long (the steroids have been incredibly helpful for me as long as they are in high enough doses it seems). The 10mg prednisone seems to be helping somewhat more this evening but still in a fair amount of discomfort (not nearly anything like yesterday before I started though, so I am grateful!) I keep telling myself not to put too much hope on any person such as a doctor, but they hold the power of "life" for me right now as far as being able to really live. I know that sounds terrible to say that I recognize any person to have that over me, but without the steroids or something similar, I am in complete agony. I am just really praying that this rheumy has compassion and really hears me out when I see him (and really hoping it works out as soon as possible to the beginning of the week as my fam doc is trying to do for me). At least I feel like he really believes me now although at first he kept asking me if I was depressed! :-(  Well--yeah... who wouldn't be after 5 months of pure torture! But I am not depressed where I don't feel like I can't get my life back with the proper help I need! I am a fighter and ready to conquer this and get back to life!!!  Nicki

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/27/2011 8:30 AM (GMT -6)   
Tfofd, my heart just breaks for you! Why do we have to beg and plead with these doctors just to give us our lives back? Why do we feel like we are children begging just to have relief?!!! I am so sorry that you are going through this. I know that is all I can say is that I am sorry -- and it seems so weak to even say it because you need someone to listen to you and do whatever it is that makes you more comfortable. I am serious that I really think I will write a book and get it publicized to the media about the silent disease that we all face. I think more people, doctors, and medical systems need to be aware of the extreme pain, fatigue, and mental & emotional distress these autoimmune problems cause. I think it should be enough to know that someone has "some kind of autoimmune problem" going on to be able to treat them freely in the manner that is most helpful to that specific individual. It is obvious to me from my short time in this forum that each person's situation, symptoms, and specific needs are extremely varied. Why is it not obvious to these doctors that each of us needs to be treated with the same human dignity, compassion, and respect that all other patients receive in the face of even less serious diagnoses than we have?! This is practically a "life sentence" to hear one has this condition. It is almost a mourning or grieving process one must go through in realizing that all their hopes and dreams may be dashed because they don't even have the strength to get out of bed every day? I have been going through the same thing as you with my doctors. I have been so weak in bed that my husband would have to hold the phone for me just to talk to the doctor and literally have to plead with him like a little child to please give me some relief from this terrible disease. And we even know what works for me--steroids--and he has not wanted to do that for me... One should not be put in the position of losing that much human respect to have to beg for something that they deserve and are required to have in order to be able to be a functional part of society. I know that is the only drive I have and you have and everyone else I have talked to--to be able to live normally (as much as possible) despite the disease conditions. Is that really too much to ask for. My heart just breaks for you honey. I wish I could do something and I know it is not much comfort just to send you "words" and more words... but I am saying a special prayer for you today too--that the ear of the Almighty in His Power and Might can help to change this terrible system and give comfort to HIS children that are suffering so terribly and that includes you. Please write to me anytime. I can't "help" much, but my heart and mind are always there to comfort with words at least and to pray that this terrible situation is taken away from all of us. It is simply inhumane to treat others in this manner. Your friend, Nicki

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/27/2011 9:57 AM (GMT -6)   
When you do see the doctor, I find it best to have a simple list of your symptoms to give him. Not just todays symptoms, but symptoms as they appeared over the the years (and if they were treated, with what and how did they respond).

If you feel it necessary,you may also take a list of what drs you have seen. DO NOT go in & recount each dr and how they have done you wrong. (Don't give them this list unless they ask for it.) This tends to waste the drs time and make him/her loose interest in you, the patient. You don't want them as therapists or commiseraters, you want them to see the symptoms and match them to THEIR education on symptoms and treatments.

Similarly, don't mention what diagnosis you think you might have. This tends to make the dr look precisely at that dx and determine a yes/no for that disease. Again, you don't want them to narrow their focus -- you want them to mentally consider EVERY dx they've ever learned about and how it does or does not fit your symptoms. I find mentioning a disease narrows their thoughts (even with the best drs who don't mean to, its the human power of suggestion.)

I'd also like to suggest 2 things -- 1) could you both try to put some paragraphs in your posts? I find them hard and difficult to read without the paragraph breaks, and most of our members also have issues with eyes & concentration. You might get more support this way. -- 2) Could you talk about things that are helpful and supportive sometimes? Everyone here is ill, string to heal or at least to find ways of coping. For instance, does some of the pain recede with ice? Or heat? Was your day better because x, y, or z happened? Did you manage to enjoy a laugh with someone for a minute or two anyway? I don't mean you have to be light or airy in dire circumstances, but try to put your mind on positive things -- it really does help us feel better.

Hope you both feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/27/2011 10:12 AM (GMT -6)   
Thank you Lynnwood for the advice! I thought I have been saying what helps me (the medicines, baths, etc.) and also have had some laughs about the good times (especially last week with Easter Egg Hunts and all...).
 
I thought I could express myself here the way I am feeling and in response to other's notes.
 
I am a little scared to write now in not knowing what all the rules are? I seem to keep overstepping them... I apologize.
 
I found this forum very helpful and thought I could turn here for support.

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/27/2011 10:54 AM (GMT -6)   
Thank you Tfofd. I know everyone means well. I just feel pretty crushed right now because I don't know "how" to express myself right and just say how I feel and that is me. I feel bad that I am coming across wrong and feel scared now to say anything. I'm sorry I don't come across more positive. I was just trying to be supportive to others that I thought were having a bad day.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/27/2011 12:09 PM (GMT -6)   
NikiS

I was not criticizing at all, I didn't mean anything that way. You are doing nothing wrong! I just meant that sometimes if I can think about something besides my illness it can help bring a little lightness to my day that somehow ends up helping my pain.

You are expressing yourself just fine, nothing is wrong, didn't mean to make you feel scared in the slightest.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/27/2011 12:29 PM (GMT -6)   
Thank you Lynnwood! I was scared I had said something wrong. I really don't mean to if I do. I am just "out and out" with everything and am always putting my foot in my mouth!
 
I really appreciate all the help and advice you have given me for several weeks now and it has been a life-line to me during this rough patch--so I don't want to lose this opportunity to talk to everyone here! I also really appreciate all the advice you gave me on how to approach the upcoming rheumy visit. It looks like it will be Wed this coming week but don't have a time yet.
 
My fam doc did say he will allow me a few more prednisone until wed since he thought it would be monday he could get me in--so I am grateful for that! I am trying hard today to catch up with homework for school... got a little behind over the past few weeks and hard to concentrate at times--but you made me feel much better and thank you! :-)  Nicki
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, September 21, 2018 2:59 AM (GMT -6)
There are a total of 3,005,360 posts in 329,224 threads.
View Active Threads


Who's Online
This forum has 161774 registered members. Please welcome our newest member, Audreyli.
228 Guest(s), 1 Registered Member(s) are currently online.  Details
bluelyme