I’ve been married to my wife, as you may know as labellanoire in the blog world, for nearly six years now and we have been through the ups and down that any marriage can have.  The one thing that remains constant, and will probably remain on the front burner of the stove, is her lupus condition.  For those of you that do not know what lupus is, it is basically a disease that allows the auto-immune system to attack itself at random times, if not on a constant basis.  It, however, affects everyone different to where some can’t stand sunlight, certain lotions, certain foods, and sometimes can’t work and makes them reach the disabled list to collect disability checks.  I have to say that my wife has gotten close to pursuing that status, but with her strong will and resolve she will not go down without a fight.  Sometimes fighting back with this disease can cause her more grief in the long run, but she always comes out on the other end standing up stronger and more determined.  It is so unpredictable with this disease that it can sometimes have me out of work for a few days just to care for her and to make sure we keep her out of the hospital.

Certain weather patterns can cause her lupus to flare up to where it looks like she is ready to play softball the way her hands look, or floating around like that Sudafed commercial.  It isn’t that bad during the winter or fall seasons, but the summer season is the worse for her, which offers some dilemma because she likes being outside enjoying the weather.  Last year when our power went out, because of the Derachio storm system, for a week, our apartment inside reached over 100 degrees!  That was obviously not healthy for her and we had to find a solution for her quick or she would be in the hospital for days to come.  Thankfully the Sunday before the power came back on, a Marriott, in the location of where I work, was able to offer us a room for a massive discount.  That was one of the worse times I’ve seen her suffer with this condition since it started to show itself back in June to July 2011.  When it first came about I was out of work for nearly two months trying to help her and take her from hospital to hospital and doctor to doctor to find out the problem.  I had to research her symptoms myself on the internet and pre-determined that she had lupus, which would take another two to three weeks before she would be officially or lead in that direction.  Hence our doctor’s office is in Albany, New York where she is from and where she went back to her old doctor.  I must say travelling six to seven hours either by car or train is worth the time and trip for the treatment we get for our health.

Now two years later she still struggles with this disease on a daily basis, but I give her great credit in continuing to stay the course to live a normal life and not let this get her down.  Since the beginning of summer we have changed our food intake to mostly home-made smoothies, which has made her and I loose weight rapidly.  Loosing weight for her is vital and must be kept on the forefront if she wants to live a long life with this disease and keep it at bay the best way she can.  Just a few days ago she had a seizure episode, which is lupus related, and I tell you it was hard to watch, but being a first responder helped me stay calm and helped her from freaking out.  The seizure lasted for about a few hours, but by morning she was fine and basically back to normal.  Some would say take her to the hospital, but if you was with us at the beginning stages of this disease, you would know that going to the hospital would do nothing for her except pump her full of pain meds and send her home six to seven hours later.

As the weather continues to do what it does, and give her lupus fingers and joints almost on a daily basis, we both have to make sure she stays the course to loose weight and remain extremely healthy.  This is also the time for me to suffer from migraines from being in the extreme heat with the humidity up in the 1000%!  Since I have gone to a more healthier choice in food and intake, I can stand off the migraines, but once I get hungry and can’t reach or get food in me, that is when things can go wrong for me quick.  This is a great improvement from years past where just being in the humidity and heat working will bring migraine symptoms and near vomit senses.  So this summer, just like others before, has to be dealt with in a strategic fashion so we can maximize our time outdoors and not be cooped up inside all summer long wishing and wondering.  If you know someone who suffers with lupus on a regular and daily basis, I tell you to be patient with them and offer your hand to help them as they will need it more than you think.  I’ve seen my wife fight this for two years now this month and unfortunately this will kill her in the future or be the cause of her death, but I take each day with her as a precious time line.  You never know when a person will pass away and from what, but you can at least make the time worth while so the regrets can be minimal.

I thank those that have stood in our corner and done what needed to be done to make sure we have what we need.  Although it hasn’t been easy, I wouldn’t change it either as this is what came with her, stay with her, and later on go with her.  I don’t like the summer season as it is with the hot weather and humidity in this area, but more so for her sake.  The only thing that keeps her going without daily flare ups as bad is a green tea substance that she puts in her food and drinks.  This potent substance keeps her flare ups from being massive and us in the hospital on a weekly basis.  Even though we have pain medicine for a back up in case she can’t order more green tea, the pain meds can sometimes make it worse for her and cause her more pain in the long run.  With this heat and her being deathly allergic to mold in the air, if exposed to too much of it, the pain meds can, I think, rush her to her demise.  However, as this summer season continues to go full steam ahead we can’t feel sorry for ourselves because of this.  We have to continue to press forward and do our best to fight this disease on a daily basis.  The fight won’t stop until she is one day with God in full peace and with painless symptoms.  Just remember if you come across someone, or know someone, who has this disease, please remember this post and just be a helping hand in this unforgiving summer season, especially when they are in a situation where the power is out and no a/c or cooling system is available to them.




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Filed under Off The Clock, REAL-LIFE STORIES

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