"All our words are but crumbs that fall down from the feast of the mind."
Khalil Gibran

Tuesday, February 19, 2013

I Have Lupus, Now What?

I have SLE, which stands for Systemic lupus erythematosus.  It is a long-term autoimmune disorder that may affect the skin, joints, kidneys, brain, and other organs.  Each person experiences it a little differently, but one thing is the same for all of us, as of today, there is no cure.



I don't normally post this sort of subject matter on this blog.  I have another Faith Based Blog called  Remnant Postings where I've talked more about my health challenges. However, I decided to post this particular blog here on Mind Crumbs because I have had many people ask me about my Lupus over the past couple months, and I don't want my Faith to be an obstacle in the sharing of my information and encouragement with someone who might need it just because they may not share my religious beliefs. 

Recently, I was in a forum on a Lupus website and there was a woman who said that she had just been diagnosed with Lupus and she wanted people to share information with her regarding what worked for them when coping with the symptoms/diagnosis of Lupus.  She wondered if there were any natural remedies that help with symptoms.  Her question was basically, "I have Lupus, now what?"



My hope is that someone will find this to be informational and/or helpful.  I want to encourage people to see that it is not all out of our control.  And if you are a friend or loved one of a person with Lupus, try to be patient, understanding, and compassionate.  Spend a little time researching Lupus (not too much...it can be scary), and just remember that you don't have to FIX IT (you can't anyway), but just BE THERE.  You can't always see our illness because our own body is attacking itself from the inside out.  But just because we look like you, doesn't mean we feel the same.  


A great website that I referred my family to when I was first diagnosed, was http://www.butyoudontlooksick.com/. Read the article 'THE SPOON THEORY'.  If you have Lupus or a similar disease, copy and paste it and send it to your friends and family!  It will help them to understand why you can't do the same things that you used to.  My husband still talks to me in terms of 'how many spoons do you have left today?'.  (That will make more sense after you read it)

Finally, after all of that, here is my letter to the woman I referred to at the beginning of this post:



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Dear (name left blank on purpose),



I am very sorry to hear of your diagnosis, but I would like to encourage you that although your life will change with Lupus, it is still possible to live a good life.    You have to be careful what you listen to however, because when I was first diagnosed, several people told me that they knew someone or knew OF someone who had died from Lupus.  That was very scary and disheartening to me, not to mention NOT HELPFUL!  People just don’t always think before they speak and sometimes they just don’t know what to say and/or perhaps don't fully know what they are talking about.  But the more I know, and the longer I live with Lupus, I have discovered that the majority of people LIVE with Lupus...not the other way around.  That is encouraging.  For me, I have family members who also have Lupus, but even so....I still did not understand much about it until after I was diagnosed.

Lupus has forced me to slow down and to constantly be aware of eliminating as much stress from my life as possible (it is an ongoing process).  Of course every person with Lupus experiences it a bit differently, but one thing that seems to touch most people is stress.  Stress seems to be a huge trigger for flare ups for most people living with Lupus.  

I've been diagnosed for 9 years now.  I take medicine but some of the simplest and most helpful tips are lifestyle changes.  They are invaluable when you realize how important they are to how you feel.

IMPORTANT CHANGES YOU CAN MAKE ARE:

* Getting sleep!  If I am overtired or struggling with insomnia, my symptoms are DRASTICALLY worse.  And I am not exaggerating, lack of sleep can really make my pain much worse.  Guard your sleep as if it was as valuable as Gold.

* Reduce Stress!  Weed out dramatic people in your life. I'm going to say that again....remove toxic people from your day to day life!  When they are family, limit your interactions (especially when in a flare up).  Take time for yourself to relax (it's best if you can do this daily, even if it is just for 15 min's), let your world stop...put on relaxing music, take a bath, meditate, etc.  I am a Christian so I will read my Bible, but do something that allows you to 'fill the tank' so to speak.  This step is SO important!  I also had to stop volunteering to do so many things, I had to limit my time out with friends and readjust things a bit.  I began having friends over more than going out, or talking on the phone instead of meeting in person.  We meet at coffee shops instead of longs days out.  (Don't get me wrong, you don't have to stop doing everything fun, but you will learn your limits.)

* Listen to your body!  It will tell you a lot if you pay attention.  I find that I must pay attention before I've gotten to the place where I've done too much (like being at the point where I'm tired or my body hurts). I've discovered that I can overdo it and not even realize it until the next day.  I might be having a garage sale, going shopping, or just standing on my feet a long time and I feel fine while doing it, but the next day I can wake up feeling awful and dealing with serious pain, inflammation, and fatigue.  Pay attention as you live day to day and figure out what activities makes things harder for you or how long you can do certain activities without suffering later (this is a trial and error process but you'll get there).

* Eat Well!  I have found that eliminating processed foods helps.  Eat whole foods (foods that are about the same as when they get picked or harvested).  Eat organic when you can (I notice benefits from reducing the chemicals I'm ingesting).  Farmers markets are great.  Many local farmers may not be certified organic but they use as few chemicals as possible and produce great food that had not been processed for traveling thousands of miles via trucks, etc.  The farmers are usually happy to tell you their farming practices.  Buy meat from local farmers if you can (split a beef with a friend or two if you eat meat)...find someone who lets their cattle graze and eat a natural diet with minimal use of antibiotics.  Better yet....eat Venison, Elk, or Wild fish (be careful, some lakes and other locations can be stocked with farm raised fish).  I didn't change my eating overnight...its been a process stretching many years, but each change is progress.  When faced with a food choice, try the best option available.  And remember, eating fresh fruits and vegetables isn't just a better option; they provide much needed nutrients for your body. 

* Surround yourself with good people!  There is an old saying that says 'We are a product of our environment'.  While I don't totally support that saying, there is some truth to the idea that if we are surrounded with negative people...we tend to see things as worse off and it causes more stress (obviously a bad byproduct) and is unlikely to help you.  But if you surround yourself with people who encourage you, lift your spirits, make you laugh, love on you, and who support you...you are likely to be less stressed and you will enjoy your life much more!

The good news is that all of these things ARE within your control!  There is so much that is unknown about Lupus and varying ideas of how to treat the symptoms.  I encourage you to take control of your life, be informed and don't just expect that a Dr. will give you everything you need.  They just can't and I find that often they are just making educated guesses regarding what will help you.  Never be afraid to ask questions or tell them the details of how you're feeling or what hurts.  Be your own health advocate.  And getting a second opinion regarding new treatment is something you might want to consider as well if it is financially feasible

None of these things seem like rocket science, and they are all sort of common sense things that most people know....BUT don't be fooled into thinking that they are not important.  Even though we know these things, you may find it is much harder to put into practice than you think.  And as time goes by, we discover the true benefits of having these things in place.  You can take all the medicines that a Dr. can prescribe, but if these other areas of your life are out of order, you will still struggle.  I know this from experience.

I know this is a very long response.  These are just things I wish someone would have shared with me when I first found out I had Lupus.  I know it may seem overwhelming, but remember these are things to do over a period of time.  You don't have to change everything today.  I would like to also share with you that because I have Lupus and have made these changes over the years, my life is better.  I have way less stress, I am surrounded by friends who love me and encourage me, I value the things more that really matter in life, I don't take as much for granted and I focus on stopping to smell the roses (so to speak).  I'm far from perfect, but I am much better than I used to be!

One thing my Dr of many years shared with me the day I was diagnosed was this, "Jessica, you can do this!  Don't allow this to beat you or ruin your life."  I personally had a long story of medical issues before my Lupus diagnosis, and I had just gotten through 3 back surgeries and a spinal implant to help with permanent nerve damage in my leg when I was told I had Lupus....so I was very distraught when I was told I had Lupus because I thought I was finally feeling better after 3 of the worst years of my life.  I didn't want to hear that I had another thing to battle.  But my Doctor was right...I am surviving with Lupus.  I have good days and not so good days, but it is possible to manage it!

Be encouraged.....and know that some people with Lupus have infrequent flare ups.  And I've heard of many people who have adjusted the things I mentioned above and DRASTICALLY reduced their flare ups.  When I can manage my stress and environment well....I do SO MUCH better!

I hope that this helps and isn't just completely overwhelming. 


Best Wishes,

Jessica

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LUPUS TRIVIA 


The following celebrities suffer from Lupus:
  • Tony Braxton (Singer)
  • Seal (Singer) - A Lupus rash was the cause of his facial scarring.
  • Terri Seymour ("Extra" Correspondent and former girlfriend of Simon Cowell)
  • Nick Cannon (Actor, Host, Comedian, & Musician)
  • Tim Raines (Athlete/Baseball)
  • Portia de Rossi (Actress, Wife of Ellen Degeneres)
  • Barbara & George Bush's Dog Millie (Yes, that seriously made the 'celebrity' list.  Ha!)
  • Kelly Stone (Sister of Actress Sharon Stone, the two started Planet Hope)
  • Mary McDonough (Actress best known for her role as "Erin" on "The Waltons"
  • Michael Jackson (Singer)

5 comments:

  1. As an added note, I'd like to mention that both heat and massage help to treat my symptoms when my joints or connective tissue are inflamed.

    *HEAT*

    1.) Heating Pad - Sometimes I use a heating pad (I have the kind that has a thin foam insert that can be wet, rung out, and placed under the heating pad cover to provide a moist heat). This is best for targeted heat therapy for one or more parts of the body.

    2.) Heated Mattress Pad - I also have a heated mattress pad that goes over my mattress and under the bottom sheet. I like this better than the standard heated blanket. Two of my most difficult times in regard to my body/joint pain is at the end of the day when I'm first going to bed and laying flat and then again in the early mornings right after I wake up. I often say that I feel like the Tin man (needing some oil in my joints so they start to work). This heat helps to relax me and reducing body stiffness...as well as just keeping my warm. I am very sensitive to cold temperatures and being cold increases my pain.

    3.) Hot Bath/Hot Tub - Sadly, I no longer have a bath tub in my current house....BUT...a good soak in some hot water can go a long way to relieving my sore joints and connective tissue. This also helps to relieve stress, which is proven to cause and/or exacerbate painful symptoms and flare ups. If you can combine this with aroma therapy (using essential oils in the bath water), some candles for peaceful ambiance, and some soothing music...even better!

    *MASSAGE*

    Everyone is different regarding what they are comfortable with when it comes to massage. For me I would never go to a massage therapist because my skin is so extremely sensitive that I fear the session would leave me in too much pain.

    On the other hand, I know many of you will be comfortable using a professional massage therapist, which is great! I would just suggest asking for someone who has experience with Lupus or Fibromyalgia clients.

    If you are like me, I've found that with some careful instruction you can work with a person that you know and trust (a friend, spouse, family member). Just be sure to talk before you begin and have an agreement that if something starts to hurt that you will have a way of letting them know. (You can talk about possible responses to that scenario before the massage begins so that you are prepared should that occur) You can learn together what works and what doesn't. For me, a certain area that is sore can be massaged and feel great and in an instant the feeling can change from good to painful. I now know at that for me, if this happens, it is now time to move to another area. Depending on how long the pain remains in that area, I may or may not ask to return to that area before the massage is over. It is sort of a trial and error process that gets better over time.

    Although this process can be a little tricky and take some practice and patience, I believe it is very much worth it. Regular massage can greatly increase the quality of your life and minimize your painful symptoms.

    I hope this information is helpful to those of you who know what it is like to live with an Autoimmune Disease, Fibromyalgia, Arthritis, or Chronic Pain.

    Sharing what works is a way we can help each other to succeed in living with chronic pain.

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