50 Shades of Lupus

50 Shades of Lupus

My Mountain, My Lupus column

You’ve probably heard of the book 50 Shades of Grey and you’ve more than likely figured out that it is code for “50 Shades of F’ed Up.” Interestingly enough, that phrase truly describes my being diagnosed and  having to live with lupus.

Every day is a different shade of grey.

Sometimes it’s a bright shade where I can step outside and feel a little bit of sunshine on my face. Other days it’s cold and gloomy like a pain that starts in your lower back and radiates from your toes to the tips of your hair. Yes, some days even my hair hurts (what I have left of it).

This holiday was extremely difficult for me, as I am sure it was for a lot of us lupies. Traveling becomes more and more difficult as family members are less than stellar in their support.  They have no idea of the aches and pains we go through and the meds we take to try to alleviate them. If I had a nickel for every time I said the obligatory “I am doing great. How about you?”, I would be richer than the author E.L. James.

How many times can you really say, ‘I feel like crap,’ and still have people around to ask again tomorrow?

Lupus is honestly about 150 Shades of F’ed up, but without it I wouldn’t be me. I wouldn’t have realized how much I had taken for granted in the past. How much others take for granted. I used to have a Rolodex of people I considered close friends. Now, I can count them on one hand. Except now I appreciate those five more than I ever did that 100.

I spent Christmas alone and in bed.

My kidneys have been acting up since we moved coast to coast three months ago, and  I haven’t been able to get in for a real doctor (save for the ER) visit. Some might read that and think “poor girl, alone for Christmas,” but I don’t say that asking for pity. I say it so that others out there know you aren’t alone. There’s a whole group of us going through the same thing.

While my mouth says what everyone wants to hear, my brain screams the obscenities I’ve been longing to say since the day I was diagnosed. I am so tired of pretending to feel good so that others don’t feel uncomfortable. What is it about terminal illness and death that make people so uneasy? It’s as if they would rather pretend we aren’t slowly dying than to acknowledge and embrace the time we have left. It’s as if they are the ones living with the fate of what we have been dealt, and it becomes about them and not us.

If I said to you I have accepted my fate and that lupus will do what it wants, when it wants, would you say to me, “Don’t talk like that. Its morbid.” Would you see how confusing it is to have this disease? To feel good one day and then feel like you were hit by a bus for the next three?

The holidays are times when I long for the peace of not knowing what I have. I also can be thankful in the knowledge that after five years of waiting, at least I have a diagnosis.

Like I said, 50 Shades of Lupus.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

41 comments

  1. Diane says:

    Lupus is a very hard illness people really don’t understand how it can effect people so differently and how it effects are daily living. Some days are ok for me but other days I hurt and the fatigue can be awful then comes the brain fog I would not want no one to have. Then there is trying to work and not being able to quit work because you have to live. I work as a CNA and let me tell you it is getting hard taking care of others when somedays you just are sick yourself.

    • Tim Bossie says:

      Hi Diane! Thank you for your comment and truthful words. Lupus is different for many people and can effect different aspects of their life. What a great inspiration you are to help others, even when you are not feeling well yourself.

    • Bridget Gardiner says:

      Hey Diane,

      I am sooo with you on trying to work and also be able take time off to heal. That additional juggle and stress can be enough to send me into a downward spiral on its own. So many people have no idea what we are going through but I meant what I said when I said, We are not alone. It’s sites like Lupus News Today that help us reach and rely on each other. I am here if you ever need anything.
      Xo
      Bridge

    • Robin Mutka says:

      Agreed ! I am a nurse. It’s so hard taking care of others when you yourself are sick. I’ve been denied disability a couple times now so I had to go back to work part time….it is just so so hard.

  2. Mary Calhoun says:

    I spent Christmas day in bed, too. Sick with a flare. Then again I have no family left so it was inevitable that I would spend Christmas alone AGAIN!
    BTW, no need for an apostrophe in Fed. Also noticed you said going outside to feel the sun on your face was a treat. Big no no for lupus! Avoid the sun!

    • Tim Bossie says:

      Hi Mary. We are sorry to hear that you were struggling so on Christmas. It is a hard holiday for many people, let alone having to battle an illness.

    • Bridget Gardiner says:

      Hey Mary,

      Always here if you need anything. Not sure if your on FB but check out my blog My Mountain My Lupus and message me or the moderators as we are always on there.

      FYI- I meant that bad word, f’ed up, but fed up works too 😉

      Xo
      Bridge

  3. Holly says:

    I read the blog and loved it because I felt so many things that you said. After seeing your facebook page, I realize we are in very different stages/phases of lupus. Long gone are the days of making pancakes at 5 am or going out on NYE. Long gone are the days of any sort of vacation – even a short road trip. My brain stem swells and my cranial nerves flare with any sort of activity and my tinnitus is so loud I can barely stand it. I live in a life of pure hell, as I get prednisone psychosis so never get a reprieve. I would love to join you on a lupus retreat but am basically bed ridden. I was once a successful photographer but can no longer hold a coffee cup, let alone my camera or my neck and spine and brain stem flare. That’s on top of the other joint pain and fun stuff. I am truly happy for you – not reaching this point in this awful disease which is debilitating to some and not as debilitating for others, and I pray that you are always able to keep up with your vacations and full schedule and night life. You are very lucky in that aspect! Wishing you the best, Holly xoxo

    • Tim Bossie says:

      Thank you Holly for the encouraging words for Bridget. We are truly sorry that you are in a more advanced stage of Lupus and for the limited activities and mobility.

    • Bridget Gardiner says:

      Hi Holly,

      I am so incredibly sorry to hear how advanced your disease has become. It makes me a very sometimes that there is no cure or effective enough of a treatment to slow the disease before it runs away with itself. Like my page My Mountain My Lupus, as I tend to keep my Personal page filled with happy stuff people want to hear, with the occasional slip up or political post thrown in to remind people I am still silly old me, even with Lupus 😉

      Anyway, message me there if you ever need anything. Also, I have a closed group called The (dis)Abled Traveller. It’s for people with chronic illnesses that want to travel but can’t for some reason or another, and we share tips of getting around a country, state or even the city or town we live in, because you never know who is passing through.

      There are a lot of posts that we all close our eyes and dream on someone else’s big trip. Other times we just post pics of crazy places so we can alll salivate and imagine. Anyway, it’s a fun little group and if you ever do get the opportunity to get out, even in a wheel chair, then we can probably all tag team in and figure out a way to make the trip less daunting for you. Much love and stay strong.
      Xo
      Bridge

    • Lisa says:

      Wow , Holly I feel like you just wrote my story .
      I’m currently bed ridden .
      Since this last Oct .
      It seems like all a blur .
      How did this happen .
      And how am I in this bad of shape 🙁
      I’m so sick I keep trying to find something else to treat , maybe something they missed . And I can get better .
      When deep down I know the reality is LUPUS is this BAD .
      Bad enough to keep me bed ridden literally feeling like I’m dying !!!

      Prayers for everyone who fights a chronic disease .
      It is defitniely God who gets me through every minute of everyday ?❤

      • Kell Wheelehan says:

        I can 100% relate! Laying on my couch day after day has become my prison. This isn’t living! Without my faith I don’t know what I would do.

  4. Tina Wagner says:

    Oh my goodness!!! I came across your article, read it and was brought to tears because someone goes through the same thing as me. As a newly diagnosed Spoonie with Lupus Nephritis, I find it very difficult to explain my disease to others. I am also struggling to try to learn my “limits” and what I can and cannot do on a daily basis. As I am trying to adjust to my medications, it feels like the world is passing me by and that no one around me can possibly understand. Your article made me realize that there are others out there like me who struggle, and that I’m not alone. Thank you!

    • Tim Bossie says:

      We are so very glad that Bridget’s experience has helped you in your own struggle with Lupus and the life that you have to try and navigate now. We at LupusNewsToday hope that you are able to continue to move forward in learning limits and make adjustments.

    • Bridget Gardiner says:

      Hi Tina and thank you so much for your kind words. There are times when I am writing my articles and I wonder if I am crazy or I am saying something that other people will resonate with. I feel like every day I am learning a new opportunity to become a better Lupus warrior and henceforth survivor. I read earlier someone saying “This disease ain’t for the weak”. And I thought to myself, she definitely gets the golden star for writing this week 😉

      Sending you love and light!
      Xo
      Bridge

  5. Heather cecil says:

    Hi Bridget
    I was diagnosed with lupus 3 years ago. I know what your going through. I feel just like your letter. My husband doesn’t even understand. I’ve started chemo for mine and some days the treatment feels worse then the disease. I just wish they could find a cure.

    • Tim Bossie says:

      A cure would be nice wouldn’t it? We at LupusNews hope that you are able to find some sort of relief through the chemo and that your husband is able to better empathize with you during this struggle.

    • Bridget Gardiner says:

      I know love. Gone too are my denial days but I still float nicely between anger, and despair. You have to be so careful though NOT to let it snap you and toss you down. Remember, too bend if you must, but don’t you dare break. Are you in a support group or do you have any other family with auto immune in general that you can commiserate with? Sometimes having a friend in crime that’s willing to have movie marathons when your on bed rest but go on a walk with you one day when your feeling great? Let me know and I can try and help out.
      Xo
      Bridge

  6. Trina says:

    Your article gaves me some hope actually. I spent Holiday in Bed as well. I just happen to be around People who say my Lupus is destrying their lives. As if I’m complaining I try not to but having noome that understands is hard. I destroy everything because I’m sick and to my Familu it makes me a bad person. I hate Lupus!

    • Bridget Gardiner says:

      Hey Trina! It can be really tough when we aren’t getting the support we need from our family and friends, but that’s why we have sites like Lupus News. So we can encircle ourselves with fellow warriors who know what we are going through. I am here if you ever need anything, even if it’s just a virtual shoulder or hug.

      Xo
      Bridge

  7. Karen Powell says:

    This really hit home. I can’t tell you how many times people say “but you look great”!!! That’s because I have a rash on my face and constantly have that flushed look! I’m close to you, just here in Charleston, SC. Would love to have a monthly or quarterly get together with other Lupies.

    • Bridget Gardiner says:

      Hi Karen! I would love to try and get some of us warriors out here together! The Lupie Lunch! I have a crazy month coming up but mid February and later I think we could plan something out! I love that idea! Message me on FB and we can plan something out.

      Xo
      Bridge

  8. Vicki says:

    Good way to explain how we feel physically(pain) emotionally(the guilty when we can’t do things as much or as well as we used to) having to cancel sometimes at the last minute or faking things(smiling and laughing like nothing is bothering us so that other don’t feel uncomfortable around you). Hardest thing for me is having to look at my granddaughter and cancel something because Lupus had a change of plans for me without checking with me first and other family members making snide comments like “Are you really as sick as you say or think you are?” “Must be nice to lay around all day and do nothing” My rock that I should be able to lean on for support(spouse) who was so used to me doing everything for everyone at first “dealt” with it by having the attitude of “if we don’t talk about it then it isn’t true/happening” then finally decided they couldn’t/wouldn’t” deal with it and moved out leaving me with nothing while fighting to get disability or something to help,which I have been denied a couple of times. So had to go to work and now having to “fake feeling healthy” just to go to work so I can have money and some type of insurance to see the Dr and get my meds. Find it so amazing how when I was healthy phone was blowing up with invites here and there and constantly on the go to shaking the cobwebs off of it when I do get the occasional call/text and those are usually cause someone is needing or wanting something FROM ME and not to ask how am I doing or if I NEED something. Also find it amazing when I am able to get out for awhile(usually cause of Dr appts or something besides work) and I run into someone they are like “Oh my goodness, haven’t seen or heard from you in ages? Are you better now?” And always FEEL like saying “No I’m still sick but because all you people who said you would be there for me if I need anything have disappeared unless I am out like this or you need/want something from me” or “Last time I checked phone calls and visits work both ways….Haven’t moved or changed my number” and it hurts the most when it comes from “FAMILY”, but I usually just stand there and smile and nod with “Yeah just been busy working”
    Would be nice to see more news, awareness activities, commercials or something like they have for other things,(stuff like Relay For Life, certain fundraising things like the paper balloons you see in stores for MS, diabetes and many others) Maybe if there was more things like that more people would begin to understand. I always have said I wouldn’t wish this even on the worst people in the world but would like for some people just to walk in our shoes for even just one day and see if they could do it….Sorry for the long rant but seems like wonderful sites like this is only place feel comfortable talking about it anymore!! Prayers for everyone of us dealing with this and hoping for the day when the medical world figures something out for us so that we can join the “real world” again!!! <3

    • Bridget Gardiner says:

      Hi Vicki,

      I completely understand where your coming from and I agree 110%. So very thankful for sites like this. Lupus news has given me a place I can go to see how other lupies are dealing with the challenges of this disease, but it has also given me a place to vent out my own issues and challenges.
      I want to say how sorry I am that those who are supposed to be there for you, have deserted their charge, but there are many of us that ARE here for you if you just reach out, like you just did. My FB page is My Mountain My Lupus and everyone on there is pretty amazing. We live by the same philosophy you touched on above. Being there for each other when we need each other the most.

      Hang in there love as it it WILL get better. And you do have people(now) that you can reach out to. Please don’t ever hesitate to reach out if you need someone to talk to.

      Xo
      Bridge

  9. David Claycomb says:

    Right after my mother had her thyroid removed she was diagnosed with internal and external lupus. There were so many days that she was in immense pain and was not able to even get out of bed. In 2005 she lost her battle with lupus she was only 41 years old was her body gave out. I would do anything to have her here with us still to see her two beautiful grandchildren whom she would love dearly. We expected the disease would take her but not as soon. May you RIP Mom love you more than you would imagine and miss you more than anything.

    • Bridge Gardiner says:

      Hi David,

      Thank you so much for sharing your story of your mothers battle with Lupus. I am so sorry you had to lose and at such an early age. Lupus can be so unfair that at times it can be unbearable, I know. My only comfort is in knowing that the medical community is making great strides in trying to help us treat this awful disease. My thoughts and prayers go out to you and your family.

      Best
      Bridge

      • David Claycomb says:

        Thank you it was very tough on me she passed right by my side at home. People dont know the physical,mental, and emotional strain the disease has on one unless you witness it first hand.

        • Bridge Gardiner says:

          Agreed. I am sure it meant the world for her to be able to be home and with family. That must have been crazy tough on you but it was extremely brave too.

          Do you participate in any lupus walks Or organizations? You’ve shared a beautiful story with us and it’s something extremely difficult to do. But when one of us stops and says ” hey, my life was touched by Lupus. Here’s how”. Then more and more of us do it.

          Keep in touch with medff and let me know if you find any cool orgs out there for us to check out. I would love to do an article on the various groups covering multiple perspectives. Let me know if you would be interested in talking more.
          Best
          Bridge

  10. Sheila Ridder says:

    Thanks for listing this article. I too don’t ever know when things are going to be bad. I try my hardest to not let it out but occassionally my kids are the brunt of my pain. They are 21 and 18 so they have watched as I have fought. We really didn’t understand until about 4 years ago. Then everything started changing. Today my son helped me carry my huge bag full of nursing books…(I decided I should go back after 15 years of being and LPN) …and I am a year away from graduating…I just pray I can keep it up…LUPUS SUCKS and so do all the diseases that join it along the way.
    Thanks for having this article and the FB page…just reading about others makes me feel a lot less alone.
    Gentle hugs,
    Sheila

    • Bridge Gardiner says:

      Hi Sheila and thank you so much for reading and commenting. They say Lupus hurts not just us, but those that love us. The flip side of that though is they get to celebrate our successes as well. Having Lupus doesn’t mean our lives are over, it just means we have to adjust. Congrats to you for going back to school and for raising what sounds like some pretty darn good kids!!!

      Best
      Bridge

  11. lacey locke cornejo says:

    I was diagnosed in aug 2011, i had no clue what lupus was, so i worked for 3 more yrs , in the 3rd yr i found myself having to take off more an more,until i finally quit my job. I was sick at my stomach alot,if anybody was carrying the germ around me,i got it..an it takes me longer to get over it..well i had been on medicine since 2011,for pain, needless to say my boss told whoever would listen that i was a drug addict, which broke my heart,thats the reason i quit my job..so unfair to me,an i live in a small town,so now i live with lupus an being a ” drug addict ” anyway i want to say is almost 6 yrs in,its starting to take a toll on me..but i get up everyday an make the best of it..so thank you for your insight.

    • Bridge Gardiner says:

      Hi Lacey,

      Thank you for sharing your story too love! I know it’s never easy to stick your hand up in the air and yell”I have Lupus” , but that person was in the wrong, not you. Having lupus means we are protected under Federal Law so don’t ever be afraid to ask for some rights someone else would be given. Which is to not have any personal information shared with other employees. But I digress. Instead I will leave you with tons of virtual hugs and love and light being sent your way. Check in with us and let us know how it’s goin!

      Xo
      Bridge

  12. Sylvanna Lheureux says:

    It is so nice to read that you are not alone when you are going through this. Every holiday is painful not only because of how you are actually feeling but the constant lying to your family that you are okay and the meds are keeping your lupus under control, just to avoid more questions and haggling. I moved here to Savannah 2 years ago and there are some amazing doctors here who for the first time has taken me seriously. I can function most days like a normal human being and finally able to keep working but there are always bad days that even spouses cant understand. I hope you find a great doctor and start feeling better.

    • Bridge Gardiner says:

      Oh wow! Your in savannah? I am sensing a Lupus Lunch! You can reach me at my FB blog My Mountain My Lupus and we should try and get some monthly lunches in different cities going. Its good for the soul!

      Now that being said, don’t give up hope love. I know sometimes I get super frustrated that it isn’t the top priority of scientists ( what must they be working on, lol)! But some of the articles here on Lupus News Today are just insanely positive in terms of results. I am still confident we will find better ways to treat this disease even in just the next 5 years.

      Message me on FB and let’s get this love nah together for late February!
      #LupieWarriors
      Xo
      Bridge

    • Gregg says:

      When you pushed through pain all through your 20’s, 30’s & most of your 40’s then u just can’t. Anxiety, loneliness, fear, inflammation in my abdomen so huge it stresses my heart early hit. Horrific migraines from age 11 on, lymph nodes throbbing, etc. the guilt, totally get pretending, when asked, I’m good.. then you cry alone. Put yourself through college, helped others always, gave everything, no energy to shower, pray every day please fix me or take me. Always being the one to listen & help my mom, partner, etc doesn’t want this person so you keep trying to do what little now you can while being told if you just do this or that…just want me back, it’s rob everything & never have leaned on others. Wouldn’t get any empathy anyways, my mom has npd and life centers around her, yet I love her even more. I’m sorry for all suffering, it takes everything.

  13. Robyn says:

    Hi Lupies, I am 51 and I was diagnosed with SLE at age 23. I most recently had a CT scan of mid area and in doing so the lower part of my lungs were captured on the scan as well. With the CT you could see I had nodules on the lower part of my lungs. My doctor read the report and ordered a full CT of my Lungs. Long story short the report showed more nodules, scarring and tumor in the right upper lung. After a few other test a PET/CT was ordered from head to middle of shin. The PET came back Underlying Lymphoma. I had small cm and small mm nodes starting from jaw, neck, clavicle, arm, above and below diaphragm, lungs, groin, pelvis and spleen. I am having blood work and waiting for a biopsy, mammogram and a few other test. I also have fibromyalgia and rheumatoid arthritis. Has anyone ever had the same happen to them? I don’t think I have Cancer! I belive this is autoimmune and not Lymphoma could I be in denial perhaps. Hoping someone has gone through this before or had something like this happen to a friend or family member. Also I didn’t mention I’m in alot of pain!

    • Bridge Gardiner says:

      Hi Robyn! My goodness love! I have no idea know what most of that means, nor would I ever even try, but not knowing is always the scary part of being diagnosed that gets me. Definitely keep calling and making appointments with your doctor and give them regular reports until your feeling at a point that You feel it’s being effectively managed, both the symptoms and the pain. Squeaky but nice wheel is my motto for sure. The worse I feel the more I call, the more I call and the harder I cry until finally, someone, listens. Lol. Or at less helps you laugh through it.

      I know I’ve heard of a lot Lupies having more than one auto-immune, although I am curious what if any studies are out there regarding statistics.

      Your welcome to hop on my FB page My Mountain My Lupus and keep in touch. Let us know how your doing. Your not alone love.
      #LupusWarriors
      Xo
      Bridge

  14. Gladys says:

    Great article. I appreciate your blog and have shared it with others to help them understand our plight. I have bounced between yes and no as far as a diagnosis and yet I have every symptom except the butterfly rash. I work from home and luckily can take a break anytime I need. My diagnosis came from an integrative physician who also did genetic testing on me. She has helped in that I now know I am opioid resistant so pain killers don’t help. I also can not and do not take biologics. My choices of medications are very limited as well as my diet is very strict. It is difficult for family and friends to understand that I do not enjoy going out to eat as there is nothing I can eat. It is exhausting for me to be around crowds with too much stimulation intensifying my pain. Also sun sensitivity. I have been very lucky lately to have good days where I can get out into nature and ground myself with nature. Stay strong and carry on.

    • Bridge Gardiner says:

      Hi Gladys,

      Thank you for sending so much, my goodness, everything! For sharing my articles and blog, commenting on my articles and blog posts, but mostly for being brave enough to share your story as well. Having lupus means we have to be warriors right from the start. But having that quiet “me” time is essential for us.I too have been spending time with nature and meditating. We have to be able to decompress otherwise every person I know with Lupus would be in a stress flare, every day of their lives. lol. You mentioned diet though. I am curious what types of diets you have tried to help with Lupus. I just joined an auto-immune diet group on FB but so far haven’t tried any of the recipes. Ive tried cutting meat out and at a different time I tried gluten free, both helped my condition but I am a foodie and have no will-power to be honest. Plus the benefits weren’t that amazing since I wasnt on a proper diet for auto-immune, I was just trying to cut stuff out for stomach issues at a time when i thought I was perfectly healthy and normal. Message me if you don’t mind as i am curious about diet and what foods people find are flare triggers for them.
      best,
      bridge

  15. Robin Mutka says:

    Thank you for finally bringing up terminal illness and death. I keep reading how you can live a long life with lupus…but I have been in home health care for over 12 years now…currently I’m a nurse and can barely work part time, but anyway in all of my years, I have only met 1 person in the geriatric community that has lupus…she was a strange case too because lupus had just started effecting her one year prior, and that’s when she was diagnosed… So if lupies get to live a long normal life span, where are all the geriatrics ( elderly) lupus patients at ???? They don’t exist !

  16. Jamissa says:

    Thank you for sharing this. I have been at the end of my ropes this past 3 months especially. I have pretty much given up on everything. So many things bottled inside me. I was diagnosed with SLE on October 10, 2014, I have Fibro and Raynauds as well. I have many other things going on with me, but will talk about it a later time. Just wanted to thank you for sharing this.

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