Lupus

Friday, December 16, 2011

Unsoliticed medical advice, it can't be that bad!

     Lupus is a disease that most people have heard of but usually do not know much about, yet it is an illness that people always seem to have the answer for or advice about.  Strangely, it seems that those who do not suffer from SLE, love to tell us sickies just what will makes us better, offering unwanted, unneeded, sometimes rude, often unfounded, strange, and potentially harmful antidotes, and or opinions. This "helpful" medical advice can leave us lupies feeling frustrated, hurt, unheard and of course annoyed.  Obviously we cannot control how someone perceives our illness, or the act of those giving us advice to stop, and think, and maybe, just maybe receive some knowledge from a reputable source before giving said advice.  There are also those lovely I know someone who knows someone who has lupus and they are fine or they are in remission.  I think this is one of the worst things that people say to me when said in an uncaring, condescending, minimizing my suffering, way.  When this is said like they even know what that person has gone through, when it really seems that they do not care.  I have explained many times about true remissions and that they only happen in 6% of lupus patients, so what some people think are remissions are actually drug induced, reductions of symptoms, meaning that person you are talking about is taking many medications, resting frequently, exercising and doing their best to function "normally".  Also everyone with lupus is different, we are known as snowflakes because we are each different in the way that lupus affects us.
 http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineempty.aspx?articleid=2756&zoneid=225
Q: Does lupus always eventually go into remission?
A: The simple answer is no. The more complex answer is that, for the majority of patients, the disease is characterized by periods of flares (i.e., active disease) and periods where things are relatively quiescent (i.e., inactive disease). In the latter situation, quiescence is usually achieved with medication.
Remission may be harder to define. One definition is that there are no symptoms, the patient is taking no medications, and all tests -- including the antinuclear antibodies -- become normal. In my study published 20 years ago, fewer than 6 percent of patients achieved that goal.
Therefore I prefer to say that lupus may often become quiescent, but some medication may be required to keep it that way. -- Peter Schur, M.D.

     It is also not so pleasant to hear that someone close to you has died of lupus and make our disease seem hopeless, but this I take much better than minimizing or not caring.  This reaction to me makes it seem like that person is concerned. 

     I get a chuckle when people think maybe if I slept more, or did a special diet, or did acupuncture, massage, or go to a chiropractor and my symptoms would just disappear.  I have no clue why people think that I have not looked into, done, asked or tried many things to help me feel better.  Of course, I have tried a number of things, you are not so clever as to mention anything I have not heard before, nor have you found the answer I have been looking for.  I also HATE when people think they have suffered more than me when having an illness that is not chronic, like a flu, honey I feel like I have the flu every day!  I don't mind when people give me unsolicited medical or life advice as long as they are not being rude, or condescending, if they are well meaning and kind, I take their remarks as concern not as minimizing how I feel.

     It is very nice to be told you look good, or pretty, or well, but just because I can slap a pound of make up on my face or body to cover rashes and lesions, wear my suck it all in jeans or dress, and smile, does not mean I feel like I look.  My hurting is inside except for when I have a rash that cannot be covered with make up or clothes.  For some reason people think there is a distinct look someone has when ill, like we should look like death is at our door step.  People also think that attractive people cannot be ill, like beauty cannot have a serious illness.  It is very strange, some of the reactions I have gotten for being an attractive woman, especially from fellow women.  I have literally gotten gasps from people like how could I possibly be suffering while having eye shadow on and a smile on my face.  I like to ask people when they tell me that I do not look sick, "What does sick look like?"  Most people cannot explain what they mean or maybe they are not prepared for my direct question made in response to their direct accusation.  I am not exaggerating my illness or how sick I am or feel, people close to me have seen me unable to walk, with the rashes on my body, the dark, puffiness under my eyes, my weight drop and gain, my hours spent in the bathroom vomiting, my thermometer reading of 102, my inability to eat, go out or talk.  They know I am not exaggerating my symptoms but down playing them.

     I would not wish this illness on anyone, I would say my worst enemy but I don't have any, fortunately.  I suffer chronically, this means daily and pretty much, forever.  I have the flu everyday, and simple tasks for a healthy person can seem insurmountable to me and others with SLE.  I do not like to complain so please do not tell me you know someone with a bad illness that never complains, maybe they just do not complain to you, or maybe they are doing well on days you see or talk to them.  I cannot help that I feel awful most days even with the medications that keep me semi functional sometimes.  I am not trying to burden you or make you sad, angry, or worry, I am just trying to deal with my illness, minute by minute, in the hopes that some day there will be a cure and or a vaccine, so that one day, no one else will ever have to suffer like I do.  I know that there are people with lupus sicker than me, and people with other diseases that are quickly fatal, but that does not negate my suffering or make my suffering any less.  I am obsessed with my illness because it never lets me forget it is there, I am sick every single day and my best day would be your worst.  Don't judge me for having lupus, embrace me because I am surviving. 

39 comments:

  1. As a fellow Lupus sufferer, thank you. You really have said it so well! I think the hardest for me has been my family just constantly expecting me to be better. They just don't comprehend that this goes on forever, and that I didn't choose it.

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    1. I am close to tears reading an relating to ur blog. I am yet to receive a diagnosis-other than fibromyalgia. Alot of "real" conditions/causes of suffering cross each other but i havnt recieved the help or understanding yet,as u could imagine- although suffering from an imunne disorder,(which ever it may be)giving up is never the option, although the idea comes briefly to mind, but we know we are fighting with all we have- some silent devastation. I pray that u can find some peace, if not reduced solitude.xx As i keep hoping an praying for myself an my children who bear the direct impact from my undiagnosed suffering.

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    2. feral, I am so sorry for your suffering, I am glad you were touched by my post. I have other posts about getting a diagnosis, it takes the average lupus patient 4 years to get a diagnosis. I fear that fibromyalgia is the flavor of the month diagnosis. It is just easy for doctors, I have both lupus and fibro but I am thankful that the fibro diagnosis was after lupus. I think after the fibro diagnosis it is hard to get a doc to look for anything else. It is worth the fight for your children, when I was so sick I could not walk or leave my bed and just getting through every minute was a struggle I would look at my husband and children and think this is why I choose life. I will pray for you that you will receive a proper diagnosis so you can find a treatment that helps. Best wishes and gentle hugs. Also if you have any questions feel free to ask, I am not a doctor but I love to do research, I'm weird! xo

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  2. Thepaintedrabbit,

    Thank you for reading and commenting on my blog. I always hear from people that even their families and close friends do not try to understand and they feel so all alone. I hope by yelling via my blog, I can spread awareness, understanding, and love for all of us sufferers.Best wishes and gentle hugs. xo

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  3. I really appreciate your thoughts here, I've been living with being sick for several years now, and while I do have many good friends who do their best to understand, and even better some of them who are aware they can't understand, there are invariably the people who want to comment that I don't look sick or yes, as you say, say they know just what I'm going through because they had a bad flu once. Then I love the comments about how great I look, I must be feeling well because my cheeks look so rosy! Ugh. Then the ones who say I just need to push harder and I'll feel well, as if it's all in my mind. I used to get really hurt by the comments, but after 3 years I'm beginning to accept that I have to trust myself, I know what I feel and ultimately that's what matters most, I know I'm not inventing symptoms or exaggerating how I feel - I mean, I can't even imagine doing such a thing, and I'd give anything to have it all go away! It's nice to find someone who knows a lot of what I'm feeling too, although I sure wish none of us had to deal with these chronic health issues.

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  4. Sarah,
    Thank you for taking the time and reading my blog and for such nice, understanding comments. I am also blessed with friends and family that mostly support me. My husband is wonderful in so many ways, I adore him and I know I am so blessed to have him in my life and I wish everyone could have love like he and I do. I wrote this due to so many people hurting and due to others not trying to understand their daily struggle and to promote awareness. I am glad when I can help others. Best wishes and gentle hugs. xoxo

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  5. Thank you so much for this. I had been feeling so much better, and medication free, for some time. But in the last few weeks I've been heading downhill and I am just devastated. We moved about a month before I started feeling really sick again (which I know is part of the cause of my health level at the moment) and the new friends I've made are kind of shutting me out now, thinking that I'm just a flake or something. Like you said, because I don't look sick, they think I'm lying. My husband is completely wonderful though, and I'm SO glad I have him and his support. Now I just need to be confident and stand up for myself. Your blog gives me a lot of hope. Thanks :)

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    1. Hi Alisha.. I SO understand how you feel right now . I was doing pretty good and did a quick 180 and getting sick again. I also understand about "new friends" and feeling shut out. Im right there myself. It is a really sucky feeling actually and although I want to just brush it off and say "who cares!" Im still hurt inside. I dont tell many people I am sick and I dont have many friends because as you said, they think you are a flake when you have to cancel plans or strange because you cant do certain things. I dont understand how people can be so insensitive and uncaring. This week my little boy was out for vacation and the four little boy friends who were suppose to call us when they made their plans to have play dates together this week (speaking about it right infront of me), obviously did not want us around. I know this because one of the mothers posted several pictures of all the boys together this week on their multiple "play dates". Is it me? Is it my son? It just really hurt my feelings for my little boy. Another thing that really bothers me about "friends" is as you may know, most of the drugs we have to take can cause us to get sick really easily which is really BAD for us. It takes every bit of my courage to tell people that I really cant be around kids or adults who are sick. To PLEASE let me know if someone is sick or may be getting sick and I will gladly stay away....I cant even tell you how many times I have gone to a playdate or a family gathering and there are SICK people there!!! I just dont get it...These things make me feel isolated and lonely. I use to have such high selfesteem and now I feel pretty much worthless at times. The only comfort I have is knowing that there are thousands of women that know exactly how I feel. Its just to bad we cant all live on an island together :) Hope we both start feeling better. Take good care of yourself

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    2. Alisha, I am so sorry you are not feeling well and it is so hard to doing well and then be hit with feeling very ill again. That is so hard. Have you seen a rheumy there yet? Please get back on plaquenil if your body can handle it, usually it is a lifetime medication. I hope you feel better soon. Thank you for commenting. xoxo

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    3. Wildlife,I think I know who you are friend. ;) I am ready for that island I call it lupie island. xo

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  6. Alisha,
    Thank you for reading my blog and taking the time and energy to post. I am so sorry for your relapse, I hope you go back to feeling better soon. I am also sorry to hear that your new friends are turning their backs on you, hopefully they will get to know you better and understand that you are truly ill. I also have a wonderful husband and that helps a lot, I don't think I could deal as well with out his support and unconditional love. A great way to have people understand our disease more is give them info on it, I have a lot of posts that explain lupus in detail and even my post on disability has in depth info on lupus. Keep up hope and know that you are never alone. We are stronger when we all stand together. Best wishes and gentle hugs. You can always talk to me. I am on facebook too. xo

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  7. I love this, I feel like it was me writing. I don't even know if I have lupus yet, though i suspect, waiting for an official diagnosis, and I am still at the beginning (almost a year since I started getting sick) thank you for this, makes me feel like someone knows! I get so much advice and I know most ppl mean well, but man, they just don't know!

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  8. Alondra,
    Thank you for reading and commenting on my blog. It can be a very long road to a diagnosis and some people wait years and still ??? I am happy you feel like you are not alone now because you are not. Most of the time people mean well and that is not what I get angry at, it is those who doubt how sick lupus makes me. It does get annoying to hear everyone's great advice! I know what you are going through, you are not alone and I understand. xo

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  9. Marissa,
    Thanks so much for writing this blog! My husband thinks that if I would lose weight & become more active I would feel better. Its hard when the prednisone makes me bloaty, right foot is swollen and left lower leg is swollen. Feet feel like they are falling asleep or I will lose my balance. Ugh the frustation of Lupus! I did start methotrexate and hoping if I can get past all the side effects I was having for days that the drug will actually help. Thank you for bringing awareness to Lupus, if only more people really understand the world would be a kinder place.
    Regards,
    Sherri

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  10. Sherri, Thank you for reading my blog and taking the time to comment. I am so sorry that you are going through a hard time, but you know you are not alone. I wish I could exercise more, wouldn't that be fun! And to get off of prednisone that would be quite a treat! I have a post on here about prednisone, he is my abusive boyfriend. I hate to love this drug! I could not walk for 5 months and on prednisone for just a few hours I was walking again!! It is a wonderful drug if you do not include the lovely side effects! I love the moodiness NOT! I agree if people were more understanding the world would be a much better place. xo

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  11. I have been reading all of your blog and you have definnitly taught me alot. I was diagnosed with lupus about a year and a half ago and I cannot believe that today I learned about remission. I kept thinking why am I not going into remission? I take the medications, I follow doctor orders, why do I feel so horrible? My rheumy thinks I should be feeling better but I am not. Thank you so much for all your information. I can't believe that Dr's don't tell us more. Now I am off to the cardiologist to find out why my EKG is not good. Yep,,,I'm ok..lol. Thanks. Phyllis

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  12. Phyllis, I am so happy that you have learned a lot. I am the same take all the medications and still flare almost constantly. Doctors for some reason expect us to inform ourselves. People can have medication induced remissions and that is all I can hope for. My rheumy told me that I also have fibromyalgia and that is why I still feel bad. Who knows what is going on. I have had quite a few abnormal EKG's as well and my cardio scheduled me for a stress test but I could not walk at that time and just did not feel like going through any more testing. I did not know at the time that you do not have to walk they can give you a shot. Anyway, good luck! Thank you for reading my blog and taking the time to comment. Best wishes and gentle hugs. xo

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  13. I have a few family members that have 'cured' themselves from various ailments is met with diet, acupuncture and massage. Telling them that I am feeling sick is met with "are you eating enough vegetables?" I'm vegan 99% of the time and have a very healthy diet.
    I feel like a failure because I'm not getting better and that I can't even talk to my own father anymore. He blames me for being sick because I wont drop everything and see a holistic specialist in England when I have a job, husband, family in Florida.
    I can barely afford my medical bills now, don't talk to me about seeing an acupuncturist!

    Wow... I needed to vent! Thanks for the great article.

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    1. I just realized that hardly makes sense... darn smartphones!

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    2. Hello Emi,

      You made perfect sense!! I am so sorry you are being judged so harshly and blamed for a disease you have no control over. If it were that easy to cure lupus we would all be cured! Also, before doing any new treatments, taking any supplements, herbs, extracts, or natural remedies please ask your rhemy before. Anything that causes our immune system to be stronger it hurts us more, that is why we take immuno suppressants. It is not fair to be sick and to be judged, how cruel! There are things that help people with lupus but don't cure it like,meditation and massage can help for some (not me it made me worse but I was told I wasn't seeing the right type of massage therapist). But nothing will cure it. I hope your family will become more understanding with your struggles. I am here for you!! I also have a Mrs.lupus face book page if you want more info and support. https://www.facebook.com/Mrs.lupus

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  14. I liked your facebook page last week :-)
    Right when I started getting sick I began having terrible cravings for garlic. I would just sit there and chew on the fresh cloves and still not be satisfied. This made me do some research and find that garlic boosts our immune system. Maybe my body was trying to tell me something. This made me look into food as medicine and really think about how I feel after everything I eat. Going in this week for allergy testing, so we will see.
    Both of my meds are generic (plequinil and tramadol) so I find it funny when people tell me that western medicine just wants my money.
    I think I will schedule myself a massage one of these days. That is one suggestion that doesn't upset me!

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    1. That is great to use food as medicine. I have been craving oranges the past month, cannot get enough of them!! They taste so good and make me feel better (okay maybe not but I love them). I started taking a multivitamin again and I feel so much better. I could not take one for a while because for 8 months I could hardly keep anything down, then I was still too sickly, so now my tummy is strong enough. Also, vitamin D and iron are prescribed for us a lot and those are not "medicine" but used for medicinal purposes. Thanks for liking my page! Good luck on your massage some people think they help a lot. I wish it helped me!

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  15. Well said! I can relate. I agree too that advice is accepted best when its coming from a caring place. There's always going to be that nay sayer that comes along isn't there. I've gotten good at not taking it to heart or getting too angered & realize that these people have a knowledge deficit. I tell myself...they are trying to relate at least.
    But then, (here's another blog for you to do kind of on the flip side of this)....when family and friends don't acknowledge your fight with Lupus at all. That can feel like... doesn't anyone care? I'm quite sure most people who know me...know I have struggled with Lupus for many years. Maybe they don't know what to say? Maybe they don't understand this has changed my life? Maybe they think I'm crazy! Maybe they really don't care! Maybe its a combination of all of those things I'm not sure. I try to tell myself, my mother taught me if you don't have anything nice to say...don't say anything at all. So that's what they are doing?!
    I've noticed old friends seem distant & I don't understand why....try not to take it too personally as we all struggle agaisnt something. I know people grow apart...but inside illness or not...I'm still the same old me at heart :) So for those who don't know what to say and really do care....I guess I would just say...I'm sorry you have been through so much dealing with illness. If you care...ask a question...what is it like for you...& I can try to answer. I can read people pretty well...and I can feel the akwardness sometimes...and I try my best not to burden anyone with my woes. I don't wollow in self pitty...so that's not at all what I'm looking for either. I'm sure my fellow lupies understand this side of the story too. Somewhere in between...don't hand out your medical advie on how I should live and I would be better off. But don't ignore my fight either. :) Do you find this to be true for you as well?

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  16. Megs,

    I wrote this more for the newly diagnosed and for those who have friends and family that either dismiss their illnesses or think they have the answers to heal them. I did not really write this for myself being that most of the people that I care about try to be supportive and if they say something not so thoughtful I don't get angry. Lord knows I have had to stick my foot in my mouth numerous times so I try not to judge. But there have been some very rude people that I don't know well and to them I could careless what they think. I wrote this because I felt so bad for those that get so much stress and pressure from those close to them that don't take our disease seriously. I think when you have this disease for a while you learn that you cannot let others upset you and you move on, it's really not worth the time and energy. Sometimes explaining how you feel can help because some people don't quite understand how they make us feel and they want to know. As you know with lupus one minute you are positive and you decide that you will control your health and then the wolf howls and dictates to you that it will decide your fate. I really don't try to explain my disease to people any more unless they ask, I cannot use my precious energy for that. I come from a place of, maybe that person does not mean to be unkind, rude or judge you, maybe they are struggling with their own demons or maybe they are in denial about how hard lupus is to live with because it is too painful for them. Everyone struggles with things in their lives and sometimes what is taken as a personal insult is rather someone having a bad day or their own personal strife. I usually accept everyone, of course there are a few exceptions. It is no fair of me to judge someone for a rude statement as it is for them to judge me for being ill. However if someone is continually causing emotional harm it is in your best interest to separate yourself from that person, no matter who they are. Toxic people will suck the little energy you have out of you. <3

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  17. Thank you for another excellent blog.

    Your last comment about toxic people sucking the little energy you have left out of you really resonated. I'd rather be isolated than around people like that.

    I appreciate your helping educate people. Gentle hugs. Injoy:) Carolyn

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  18. Carolyn, thank you for taking the time to read my post and comment. Your kind words are really appreciated. Much love. <3

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  19. Well said Mrs. Lupus. I am a husband of a wife with lupus and have seen first hand the nastiness of this disease. I saw my wife reading your blog, so I took a look, glad I did. Keep up the good work here, information like this is vitally important for those with lupus, those that support those with lupus and for those that know or may know someone with lupus.

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    1. Thank you so much for taking the time to read and comment on my blog. It is wonderful that you are so supportive of your wife, it is so important to have a strong support system.

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  20. Thanks for putting together this blog, I have not been Offically Dx yet. But I have had a recent Mildly positive ANA and I have many symptoms I think the worst is feeling like I have been hit by a bus, And you never know when you are going to wake up with it. I used to blame it on my bed that is was to hard but I think I am just kidding myself. I have a Very slight rash across my nose and face but it is very light. I noticed this a few years back, thinking that it was because I was getting older and my skin was changing. It darkens with the sun, again I blamed it on sunburn, but you would think the entire face would be burnt.I had no idea that I could Possibly even have Lupus. Heck I did not know really what it was, but after studying it more I have noticed that I have many symptoms. And now I am in waiting for a DR appoinment thankfully on thursday. Thanks for the great blog I will be reading more soon. May your days be filled with blessings

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    1. It takes a long time to get a lupus diagnosis. I think many of us kid ourselves, I had many excuses for my symptoms. Herniated discs, not sleeping enough, doing too much etc. I always had an excuse. I wish you luck at your doc appointment I hope the doc listens to you and does the proper things. Sending you best wishes and gentle hugs, Thanks for commenting!

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    2. my sister was diagnosed with SLE last year ,,,,,we together as a family are living with it . i dont have SLE but i can imagine how hard it would be to suffer through ....we all have spent many sleepless nights ,her boddy used to shiver due to pain ....its quite depressing to see a family person to live through such a pain
      you are doing a great job by the way
      BEST WISHES

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    3. Vinod Raturi, Thank you for being so supportive to your sister and I am so glad you took the time to read and comment on my blog post. Best wishes to you and your family.

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  21. This is so heartfelt! I absolutely love it! Words spoken straight from the heart. I am myself not a suffer but I suffer through my dad. It was been a very long and tiring road dealing with it. I am not even having symptoms so I can only imagine what he is going thru it first hand. I have been there thru everything with him and it's been long to put it nicely. He has been to what seems like a million Dr's before they finally properly diagnosed him. And even when people ask how your feeling or say your looking good it may be to lift a suffers spirts. But I am sorry for all suffers and loved ones! If anyone is from Ohio the Ohio State university has the best Dr's ever! Maybe a couple hour drive once or twice a month but totally worth it. Dr Stacy is the best!!!

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    1. Thank you so much for posting. Thank you for sharing doctor information it's so important to have a great team of docs. Your father is lucky to have you as a daughter thank you so much for supporting him. hugs.

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  22. Have been suffering from (LUPUS) disease for the past four years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (HERPES VIRUS) by this Man Dr Osemudiamen and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr.Osemudiamen telling him about my (LUPUS) he told me not to worry that i was going to be cured!! hmm i never believed it,well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr assured me that i have cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So friends my advise is if you have such sickness or any other at all you can email: drosemudiamenspellhome@gmail.com or call +2347038110398. He told me that he also help people to cure HERPES VIRUS and also help people to bring their ex lover back. contact dr Osemudiamen if you have any problem. email: drosemudiamenspellhome@gmail.com

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  24. Hello everyone, I was infected with the herpes virus and I got cured of the herpes virus few months ago after i contacted Dr Ekpiku. I saw a post on the internet after i have seek healing for several years from different doctors in California. I sent the Doctor a request for help, just a few email i followed his instruction and he sent me the medication after i paid him. Now i am negative and i referred him to all my friend who had this same sickness and they have gotten their cure too. You can contact him via his email. Ekpikuspellhomeofgrace@hotmail.com or Ekpikuspellhomeofgrace@gmail.com Phone call: +2348073673757. While i was on his medication i understood that he can also cure HERPES, HIV/AIDS, CANCER, Male/female menopause, Miscarriage, Menstruation problems, PREGNANCY PROBLEM, EPILEPSY, GONORRHEA, LASSA FEVER, OBESITY, KIDNEY FAILURE, HYPERTENSION, FIBROID TUMOR and many more.

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