Does Lupus, the Joy-stealing Bully, Have a Nasty Friend in Town?
I am a self-professed joy junkie, so when I see too much negativity I either try to counter it or avoid it altogether. This is my mantra for the way I live my life.
Even when I had a pity party for myself prior to lupus, I would let it last only three days before I demanded: “OK, girly, get over it.” I am all about solutions and being happy.
But it’s been difficult lately being my joyful self. I’ve become a cave dweller, avoiding people – which is totally unlike me. So I knew I needed to spend some time in solitude. I was already doing that, of course, but this alone time was purposeful, trying to figure out why I wanted to be alone.
And it didn’t take me long to figure it out. In the past few months, I have been having problems with my arms. I am stubborn, so I started doing all kinds of exercises to try to strengthen them.
Unfortunately, it seems that instead of getting better, my arms are getting worse. It has become difficult to shower without using both hands, one assisting the other.
Taking off a bra has become a Cirque du Soleil act of epic proportions. I’m convinced that if I recorded that struggle, it would be quite entertaining.
My arm challenge has become real, and now I am waiting for an appointment to see if lupus has brought a friend who is playing a nasty neuromuscular game with me.
While I was reviewing my attitude, I started thinking, “Man, I’m too young for this,” and that triggered a new pity party. This happened within the party that was already going on. Party crashers stink. In fact, they can often get out of control.
Then I remembered that lupus is a messy little drama queen, and its favorite demographic is the young. It typically jumps in and starts being mean to women who are of childbearing age.
Like any bully, lupus brings its friends with it. I have always avoided bullies – not because they are scary, but because they make me angry, and want to fight.
I’m already fighting lupus. But when you face more than one opponent, your chances of winning are slimmer. That’s not to say it can’t be done. But it requires you to brace yourself, both physically and mentally.
As I reviewed my attitude, I realized that once again I’m gearing up for a bigger battle. It has been hard enough having my life dropped on its head. Now I’m fighting my way out of another fog.
I am hoping lupus’ leaves soon. One thing I have learned about bullies and their friends is that if you can beat the biggest, baddest one, the others will run.
I am battling for remission of my lupus as if my life depended on it. Actually, it does.
I know I will win, even if it’s just in attitude.
Last weekend I went to a jazz club and had lunch with new friends. Today I will be baking cookies with another friend.
Lupus has taken so much from me, but I refuse to give it my joy. I am making an effort to spend time with friends, coming out of my cave a bit more. We can’t be in control of everything, but what we can control, we should.
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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.
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Eddie Phillips
Hi Kellie, Lupus is the bitch that just keeps on giving.
Hope all goes well with the investigations, we would make good CSI's as there is so much investigation that goes on with Lupus and a lot of it is done by Carers and Warriors such as yourself.
We recently had some good news, I was investigating some symptoms and it pointed to Cerebral/CNS Lupus but also possible Early Onset Dementia, well the good news is that it is not Early Onset Dementia....woohoo....it is ONLY Cerebral/CNS Lupus, so that is our new gatecrasher.
Thinking of you as always
Eddie
Kellie McRae
Eddie, you said a mouth full! This thing has definitely made us experts at research, I think we could give many of the doctors dedicated to research a run for their money. I'm so tired of looking up new stuff but we really have to stay on top of what we can. I am so happy to hear that its not early onset dementia, as soon as I read those words I was on the edge of my seat. I'm sorry that is cerebral/CNS lupus but given the choice, I can certainly see why you are happy. Prayers going up for Julie and you always, and I just wish we could push the gate crashers out, call the cops and have them hauled off but we both know, we will have to stand at the gate for the rest of our days with our baseball bats trying to beat them back :-)
Judy Marley
Good for you keep optimistic, we all have down days these are nasty diseases that wish to control our lives, I was diagnosed with Lupus three years ago at 75, a very active person many of these were outside but I continue pushing at the gym and swimming indoors.
Have they checked you for Dermotomyasitis as that is what I have not Lupus.
Angela Shearell
On December 16,2016, just 9 days in front of my 4514th birthday, I received a phone call that would change my little life. The voice on the other end of the line told me that I had tested negative for rheumatoid arthritis, but the results had come back positive for systemic lupus erythematosus. My heart fell to the floor. My family and students have been my greatest earthly gifts during this life-changing ordeal. So as I cry and type this comment, I ask that you would all keep me in your prayers. Mind you, I'm not one to give up and lay down. I am a warrior. I will stand and fight this ugly monster and all of its comrades with you. Peace and blessings to you all!
Kellie McRae
Angela, I have made sure to stop as I read your post and say a special prayer. This is not the diagnosis anyone wants but I don't think RA would have been any easier to deal with since they both really do a number on your insides. Cry as much as you need, its therapeutic and I am glad you have no plans to lay down and let lupus run amok. Soldier on Warrior, there are plenty of us in the foxhole battling it out with you and we are here for you to lean on. Blessings!
Linda Craig
Kellie and Angela I'm in the foxhole with you all i was diagnosed in 1999 i am 66 years old retired last sept. 1st. No family member understands my pain and fatigue.. I don't get treated by drs. For my Lupus.. I don't chemical myself i don't need the added side affects... I use natural herbs.. Etc.. I also suffer from IBS..which is spasams of the colon.. I had one half of my colon removed 4 years ago because of a pre-cancerous leision... Coping with both naturally as much as possible.. Prayers for all that suffer with any disease especially Lupus and any Gut disease! Help to see I'm not alone in my struggle!! Even though I don't wish this on anyone... Except maybe My Husband he has no compassion or understanding that the stress he creates make Me sicker and he doesn't care about no one but himself!! Pray for Me please and I You All in return!!
Kellie McRae
Aww Linda, I'm so sorry that your hubby isn't understanding. I am all for doing as much natural as I can but I take the medications. I shared in another one of my articles that I once stopped my meds cold turkey (I don't recommend this) and I learned that for me that was a HUGE mistake. I will definitely say a prayer for you, we could all use some support and relief. Blessings to you lady, I hope you have more good days than bad.
Eddie Phillips
Hi Linda, it still astounds me how many partners don't get Lupus, especially those that have been together for so many years, I just want to slap them around until they understand. My wife Julie has had Lupus for 30+ years and we have been married for most of that (32 years and counting). I recently gave up work to become her full time carer and would do anything for her, in fact I do all the housekeeping, cooking, help her with bathing and dressing etc. I don't say that for praise it just comes naturally, whatever happened to "in sickness and health".
Family is a different matter, they don't live with it from day to day, but they should be willing to show empathy unfortunately as you have found it doesn't always happen. In fact my sister-in-law is no longer welcome to our house due to her lack of understanding I threw her out.
So you definitely have my deepest sympathy and I will be thinking of you.
Sarah Jansen
Hi Kellie,
My SLE ambushed me in 2014, just as I turned 54. It brought a very nasty friend, fibromyalgia. Your description of the difficulties of showering and dressing reminded me of the weeks leading to my diagnosis. My wonderful husband would help me with my shirt and bra. Those initial battles were so difficult.
Eighteen months later and more nasty friends showed up, Reynaud's and an extensive DVT blood clot in most of my left leg with some little pulmonary embolisms tagging along. Just before the DVT was diagnosed we were prepared to just give in to the monsters. That diagnosis gave hope again.
Despite the disease, I think I get most frustrated by the lack of media attention to Lupus.
As the saying goes, keep calm and carry on.
Kellie McRae
Hi Sarah, I like how you put that...we were ambushed weren't we? Lupus is so not nice and it is like that party crasher that just won't go away, it's surly and wants to fight. Please don't give in to the monsters. I know there are so many days I want to just throw in the towel too. I'm glad you got something in all of that, that gave you hope. Also, having someone in your corner that can help you is awesome as well. Please thank your husband, so many people do not realize that its not just a disease that WE battle, it's also a disease that our loved ones battle as well, just from a different standpoint.
Charese smith
I recently was diagnosed after over 3 yrs of feeling awful with 2 points of lupus. I was told that 4 are required for a complete diagnosis. It was decided that I have another possible autoimmune disease in addition to beginning stages of lupus. I am currently a stay at home mom of two very active boys. One is 4 and the other is 8. Any advice for the days when my fatigue, and back pain, prevents me from being a playful, engaged mom? Also, any supplements that have helped you? My Dr. only prescribed the anit-malaria drug and I am not emotionally ready to have more headaches or brain fog to begin taking it.
Thanks,
Love and Blessings
Charese
Kellie McRae
Hi Charese, I'm so sorry to hear about your diagnosis. I can't imagine what it must be like to have small kids at home. As far as supplements and things of that nature, my recommendation is to do your own research to see what works and make sure you speak with your healthcare professional. We are all so different that one thing that may work for me won't work for the next person. As far as the kids, I learned when rearing my kids that as long as they have your attention, that's what's most important. Board games, funny games that don't require you to move very much will be good for both of you. I used to play things like who could make the funniest faces and now with cell phones, you can take pictures of the silly faces and you can each vote on them. I used to also play "Worlds worst" which we would insert things like librarians, teachers and things that make them laugh. I also liked to play I Spy or help them write 2 person plays and they can perform them for you (this became a Christmas tradition in my home) funny, my kids enjoyed it so much that even as they became teenagers, they would get together and do a skit to surprise me. I hope this helps.
Acookie
I'm here being all chummy chummy and buddy buddy with my pal lupus and it's friend rheumatoid arthritis. <3 I'm 20 and I was diagnosed like 5 years prior.
Kellie McRae
I know, it stinks making friends with the enemy but once we learn how to work more with it than against it, I personally have better days. I go rest when it says rest and those days when I have great energy and low pain, I do as much fun stuff as possible :-)
PARO18
I am a 51 year old women. I have been diagnosed for over 17 years and still i get surprised by the impact of all my heath issues. I have just finished my postagraduate MBA, and found a job straight away. Unfortunately, my condition got a new friend called fybromialgia. I have just finished my postgraduate MBA, although during my academic year I pushed myself to the limit to finish it, i finished and managed to get excellent grades. However, I was totally exhausted! Now, just after a three weeks of working as a teacher, I had a nasty fybro and lupus flare up. It is so annoying and frustrating, and I am wondering if I just need a rest and get back on track with the right medication. Blessings to all and my best wishes :)
Kellie McRae
I am so sorry that you have put in all of that work and now your body is dragging in new stuff. Its so difficult because once your immune system is compromised, it seems is prone to all kinds of additional things. It seems we are constantly in a state of "cope". I hope you get some relief and get the opportunity to enjoy the fruits of your labor.