LUPUS AWARENESS MONTH

SHE FIGHTS LIKE A GIRL!

We are now in a brand new month, which  also celebrates a disease that I am familiar with all to well.  No, it’s not me living with this ailment, but I live and married to a woman who is living with said disease of lupus. To educate those on who are not familiar, aware or understand this disease, lupus is an autoimmune disease that can create many other symptoms within the body.  This disease can affect any organ in the body and can be just as deadly as cancer and other life threatening ailments if not treated or managed properly by your physician.  No cure exist at this time, but this doesn’t mean that you can’t live life to the fullest or be happy.  Sure you may have limitations on what you can participate in or push your body to do, but the worse thing you can do is nothing!  Sadly, many doctors and some people don’t think this disease exist and it’s all in the patients’ mind.  However, discussing the symptoms that you have can’t always be explained in a textbook or with a simple medical degree.

Many symptoms come with lupus, such as butterfly rashes, extreme fatigue that doesn’t go away with rest (ever), joint pain, stiffness, joint swelling in some or all joints, muscle pain, fever that comes and goes, rashes, skin sores, hair loss, seizures at random times and sometimes fainting spells.  Each person is affected differently by lupus, which adds to the anomaly of how to treat it with one simple medical treatment.  For my wife, her lupus flare-ups are usually triggered by extreme stress, weather changes, humidity, certain foods and beverages and environment.  When we lived in Maryland, the humidity was literally killing her slowly where she was in the hospital almost every two weeks during the spring and summer season.  At one point we spent over $3,000 in a matter of a two and half months before she was diagnosed.  The amount of stress that hovered our heads for that time frame was just ridiculous, and I was only able to work one day in those two months.  Many visits to the hospital and urgent care centers just resulted in the same diagnosis over and over again or simply the medical professionals had no clue.Lupus Ribbon - 2

My wife was subjected to numerous medical procedures such as ingesting barium, which is very chalky and bitter, just to see how solids digest in her stomach.  Other times she was forced to eat oatmeal, which she is not a fan of, to see also how food and solids digest through her system.  They told us what we already knew that food digest very slow in her stomach, but we needed to know why.  Once again we went home with more questions than answers and really began to question the hopefulness of us ever finding out what is wrong.  Seeing your loved one crying in the middle of the night because she is scared and not sure if she will live through the week in this condition is very hard to watch.  I started to get extremely frustrated with the hospitals and doctors not really hearing her complaints and listening to her symptoms.  One incident really got me when we were sent home with medication like Zantac and Prilosec, which they thought would help her issues in her stomach.  Well, that quickly went to the waste side when my wife took one, suddenly screamed at the top of her lungs, dropped to the floor and just curled up in a fetal position.  When I was able to get her to talk to me about what happened she explained to me that she felt the pill burst in her stomach.

I got frustrated to the point where I was doing medical researches myself to find out what is wrong with my wife.  Watching her unable to enjoy things that we started to enjoy be squashed because she’s ill was a very hard transition.  Through all the researching I did for the following hours I was able to narrow it down between Lyme Disease or Lupus.  She had all the same symptoms of Lyme Disease, except for one thing that she was not suffering from, but everything lined up with our second choice.  In one of our many visits to the hospital we brought up the possibility of her having lupus, and finally one woman physician explained to us that she might actually have lupus.  This was confirmed with our current Endocrinologist when they tested her white blood cells, her ANA and other lupus bodies.  Two and a half months later we finally had an answer of what was ailing my wife, but our early knowledge of how to handle it was still very young.  For nearly five years we have had to learn the hard way of what to avoid, what not to do, what not to eat, how to keep stress at a minimum and what to do when her flare-ups decide to come.  At times her flare-ups can put her in bed for hours to days at a time, and for her to quickly get over the flare-ups is to sleep; which has at times been 16 hours in one shot.

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It is very ignorant for people to tell her, “well you don’t look sick”.  People with cancer sometimes don’t look ill either, but you wouldn’t dare say that to their faces.  Many people who are not educated enough to understand this disease can and will make remarks that are not appropriate and wonder why they get the side eye.  Lupus has affected many women in keeping them from getting pregnant, but for others it hasn’t bothered them in preventing them from getting pregnant, but makes it much harder.  My wife is somewhere in the middle with that of making it harder for her to get pregnant, or possibly not being able to get pregnant at all.  This is something that we may never know until she passes the age of where it is her last chance to carry a child.  We have learned some many things living with this disease that we have approached a place in our life that we are blessed whether we have children or not.  Our life is not going to go to hell in a hand basket because she doesn’t or can’t bare me a child.  I love her regardless and having a little one added to our family will not necessarily make that any better.  We have to think about the stress that comes with raising a child and how will she fair with that interruption of always having to care for him or her when I’m not around.

Lupus seizures are real and can happen at anytime.  We have had to learn of when to read her body language and how she feels to know if one is coming in the immediate future.  Since we have a dog now he can pretty much tell when she doesn’t feel good or when a seizure is approaching by hanging around her constantly.  Our black lab, Romeo, is a very wise and smart boy who knows that she needs comfort when she’s not at her best and struggles through the day.  Sometimes she feels bad when I have to pick up more of the slack when she’s not having a good day, but this is something that I have embraced and will continue to embrace until the end of time; unless my body decides to break down as well.  The hardest thing, I think, to treat lupus is that there is not specific test to determine whether a person has it or not.  You can’t just walk into a clinic or a hospital and ask to test you for lupus by giving you a kit or just drawing blood.  So many other things go on behind the scenes, and questions that must be asked, before you are diagnosed.  True your white blood count will be elevated, but by how much?  Your ANA might be negative or positive, but that doesn’t necessarily mean you have lupus either.  These are things that they look at, but all symptoms sort of have to be tied together to determine your diagnosis; but AGAIN it affects everyone much different.

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All these years later, and living in a whole new region of the country, we are still learning more and more about how this disease transform as she gets older.  My wife is also allergic to almost everything known to man so that also made diagnosing her much more difficult, but we have gotten better in knowing if she is having allergies or a lupus flare up.  In talking to other people who live with this disease, we have learned that some, if not most, are at their worse when winter season falls.  The bitter cold in the air, and the barometer declining, makes them experience severe joint pain and near paralysis when they flare up.  My wife goes through the same issue when temperatures begin to spike above 85 degrees and the humidity is above 60%.  After rainstorms when the mold is ever present can be dangerous also, but the rain washing the contaminants out of the air balances it out for many lupus soldiers.  So if you ever hear someone say, “my grandmother or my mother or my best friend had lupus at one point”, is either misinformed or ignorant on how the disease works.  With no cure insight at this time, you either have the disease or you don’t and if you do have it and it isn’t bothering you currently, then it is called remission.  Remission is where the disease lays dormant until whenever it decides it has been dormant for too long.

With lupus causing many other symptoms within the body, my wife has suffered many surgeries and skyrocketed medical costs.  Due to people mistreating the medical system and constantly raping the drug market, it makes it much harder for her, and other lupus soldiers, to receive their medication as it is prescribed.  Organizations continue to raise prices for medications, obviously money gauging, that can assist helping these soldiers live a better life, but personal budgets keep getting demolished and blown out of the water to combat.  My wife is only in her early 30’s and lupus has already taken much affect on her esophagus, stomach and kidneys.  At one point she was taking four pills to slow down the deterioration of her kidneys for $120!  Four pills cost that much each month and that obviously destroyed any budget we had set for those few months.  Anyone living with this disease can tell you that one day is different from another and you don’t know for sure how you will feel the next day or next week.  Lupus affects your way of life, but you can determine how much you let if affect you.  Some people have severe cases of lupus where they are in wheelchairs, bed ridden 24 hours a day, go through chemotherapy and actually medically handicapped. 

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The worse thing you can say to a lupus soldier is to tell them, “get up and move around!”  If they could get up and move around they would’ve done that already!  Each time my wife explains what hurts or how her body feels today, people want to drop their two cents in giving her advice on how to move around, what to do to keep from being stiff and what she should do for joint pain.  Listen, if a lupus soldier could do all these things with ease you wouldn’t even know they have lupus, unless they told you.  My wife says it all the time that his disease sucks and I agree 1000%!  It isn’t a simple thing to live with and very unpredictable, but you have to accept that it is part of your life or you will be suffering much more than you need or want too.  The best way a normal person can even somewhat understand how it feels to have lupus is to imagine your worse flu or time you had pneumonia, and picture having that everyday for the rest of your life!  Could you imagine those symptoms always being there no matter what you did?  Most of us would be ready to jump in front a semi or hoping we get ran over by a train to end our misery.  As time goes on living with this disease I’ve been more and more apt to educating people on what this disease can do and will do.

Until a cure is present and delivered to every lupus patient around, medical marijuana is one thing we have considered if necessary.  It isn’t off the table with our doctor and will be used as a last resort, before chemotherapy, if her prescription drugs don’t continue to keep the body aches and pains at bay.  We aren’t that far away from this coming a reality and if it will make her feel almost to the point she is cured of the disease than best believe we will pursue it for her.  My wife’s health and well-being comes above anything I do, including my job, and would love nothing more than to see her pain free and not having to suffer anymore symptoms of this nasty disease.  However, the silver lining with this being now a permanent stay in our lives is that it has shown how much our love for each other really is, how strong she can be, how much we can endure together and that even our rockiest times won’t deter us.  This woman I am married to is very strong and continues to push on even when she is not feeling her best!  Unless she just can’t do it that day, I will come along and lift her up to keep going when necessary.  All lupus warriors are strong and possibly the strongest person you know or will ever know.  If you know someone who has this disease please don’t feel sorry for them or give them pity, just be there for them when they are struggling to continue to do the simple things in life.  Taking a shower, putting on clothes, eating food, drinking or anything that we take for granted just be there for them and let them know you care!

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Even though most women are affected with this disease, many men have it too.  No one is immune from being affected, however, it is not contagious but no one knows for sure if it is passed through the genes or just something that happens.  Many questions have to be answered and many researching has to be done for society to be free of this disease.  It is an everyday battle for lupus warriors and a constant struggle of not giving up and to maintain mentally strong.  The fight isn’t easy for their partners either, who can only do as much as they can while watching their friend or love one dealing with their daily mountains.  You have to learn to grow in this fight together or you will not survive this day to day battle, and things will not improve at all.  Faith and courage are the two biggest things I think you will see a lupus warrior have and display to all of the world that they can’t be beat by this disease.  Together we can fight this battle and conquer the war on lupus, but we all have to be on board and make sure people who suffer everyday aren’t forgotten and pushed to the back burner because they don’t look sick.  Ignorance is not the medicine that these warriors need!

Henry Scott

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