My Life with Lupus/MS

Life with Lupus/MS (background info)

I realized after putting up that last (and first of a series) post regarding Lupus/MS that I had never posted the following ... 

Why am I writing this?  Because I need to.  Not for sympathy but for understanding.  Most autoimmune diseases are misunderstood, not only by average people, but also by doctors who do not specialize in these diseases, they do not understand how they are diagnosed and some do not (in this day and age) believe they even exist.  Some, who claim to be a lupus specialist … have no clue … believe me, I’ve seen several like that! 

What are Autoimmune Diseases?  “With an autoimmune disease, your immune system attacks healthy cells in your body by mistake.  There are more than 80 types of autoimmune diseases, and many with similar symptoms, which makes getting diagnosed frustrating and stressful.  Usually the first symptoms are being tired, muscle aches and low fever.  The diseases may also have flare-ups, when they get worse, and remissions, when they all but disappear. The diseases do not usually go away, but symptoms can be treated.”

What is Lupus like for me?  It’s:

When you wake up some mornings and can’t get out of bed because the flu-like symptoms are unbearable.  If you’ve ever had the flu, you know EXACTLY what I’m talking about … achy muscles all over … down to your bones, chills, etc.

When your muscles ache so badly its painful to move much less walk … I’m not talking muscle aches like you get with exercise … this is more like pins and needles … like your muscles are refusing to work.

When your 16 year old son has to practically carry you down the stairs to drive you to the doctor for steroid IVs because for several days you haven’t been able to get out of bed because every time your feet hit the floor or you stand there is electrical like pains shooting down from your knees to your ankles.  Like your legs are hooked up to electricity!!!

When you find it difficult and painful, joints and muscles, to walk around your own yard especially if there are any inclines, you avoid the inclines!

When you can hardly make it down your front steps and down the driveway to check the mail … holding on to the stair railing for dear life because when you are in that much pain … pain that brings tears to your eyes … you tend to fall a lot.

When every joint hurts so badly … joints you never even think about having … like all those tiny joints in your feet … or every joint in your spine and worse every joint in your entire body.

When you are fine, or feeling pretty good, and you go out to dinner, or Scott has just said dinner is ready (he does 90% of the cooking in our house), and suddenly you’re so violently nauseated and faint you cannot eat and must leave the restaurant or not eat dinner with the family.

When you are standing in line at a check out and your throat becomes so suddenly dry you have to take a  water or soda out of the case at the check out and start drinking before you’ve even paid for it cause you feel like your gonna choke to death!

When you miss a football, baseball, basketball or some other event of your child’s because you’re just too ill to go.

When stairs become so unbearable but you can’t avoid them and, if in public, you move so slowly it’s embarrassing.  There were years where I avoided sitting up high in the bleachers at games of my kids because it was just too embarrassing trying to climb the steps.  You feel like your 100 years old.  Or those times when you do sit up high because you’ve been having a great day and feel wonderful and have energy, only to find when you stand that you need assistance going down or back up. 

When a migraine will come on and last for days and you know you’ve done nothing to trigger it and the medications that normally work don’t and you end up in the ER or even worse having to spend the night in the hospital.

When your body wants to go into anaphylactic shock just by walking down a laundry detergent isle in the grocery store … I literally have to hold my nose or avoid the isle entirely… just the smell of the chemicals, can be very overpowering.  My family has witnessed firsthand what it does to me.

When walking outside into the cold or being in an extremely cold restaurant or theatre makes you very nauseous.  I carry a jacket with me when we go out and always have a blanket in my car … there’s been many a time Scott or one of the kids has had to go out to the car to get my blankie!

When you have months and months of back to back infections: from bladder, to kidney, to bronchitis, to yeast, to URIs, to UTIs, eye, sinus … you name it … you just can’t shake it and before you know it you’ve gone through several rounds of antibiotics … to no avail.

When your legs from your knees down to your toes feel like you have them in ice water no matter how many pair of socks you put on or no matter if its 90+ degrees outside.

When you get so nauseated and dizzy you have to go lay down RIGHT NOW or you will pass out … no matter if your in the middle of shopping or doing some activity with your kids or family.  At my worst, I’ve had to leave full shopping carts (so don’t judge people who leave full grocery cards just sitting there) but thankfully most times Scott has been with me so I leave him to handle it.

When you have unexplained skin rashes that come out of nowhere and attack various parts of your body (sometimes just one location … like your hands or feet … but many times spread over different areas at the same time… thighs, face and neck, belly button area, underarms, knees … you get the picture).  When I say unexplained … I have had many skin scrapings done of these rashes and a couple skin puncture tests (where they puncture the affected skin down through several layers requiring several stitches to close the wound) … all with inconclusive results.  I’ve been asked by strangers how I got burned … that’s how strange the rash is and can look.  And it not only itches it is very painful.  Yes, I’ve even had them in my scalp, causing alopecia (serious bald patches) to the point you have to change your hairstyle to cover it until it finally clears up and grows back in … thank goodness it has always grown back in!!!

When you go to pick up a pitcher of tea or something else small and you drop because you’ve temporarily lost muscle control.

When you sit down to eat dinner and have no idea what the fork and knife are for.

When you legitimately cannot recall the name of something … a common thing, like a dishwasher or dining room ...or what you were going to say or even worse yet … you get lost in a conversation … literally lost.  It’s a helpless feeling.  It actually has a name ~    “lupus fog”.

When you try to walk for exercise but can’t because it’s so painful in both your muscles and joints you move so slowly … its agony.

When you break out in tiny bruises for no reason … bruises that look as if someone has touched you (the size of a fingertip)… all over your body.

When you hurt so bad you cannot handle being touched … it’s just too painful.

Now you’re probably thinking “Good Lord Have Mercy” … however, these are just many of the symptoms I’ve had … never all at once but many times several at the same time … like joint pain, muscle pain, fatigue along with some other symptom or any combination of the above symptoms. 

For the past 4+ years, I’ve been in ‘remission’, which as I understand it and my doctors have said … Lupus never goes into remission and stays and its not really a true remission as you still have ‘break through’ symptoms but not true flares, if that makes sense.  With my remission I’ve had … perfect blood work results (CBCs and Cardio CRPs), symptoms down to completely bearable with very very very few bad days and I’ve been off Plaquinil (a lupus medication that controls the symptoms) for over 4 years and have only had to have oral steroids occasionally, as opposed to IV steroids.  Before remission … the symptoms were DAILY … some days worse than others, of course, but DAILY.  It was my life … but it wasn’t much of a life most days.

I try hard to ignore any symptoms … mind over matter sort of thinking … but when I feel sooo bad … it gets very depressing … very!  AND resting … I’ve learned to listen to my body which is VERY important with any autoimmune disease … learned what my limits are and learned to make myself REST cause it can sometimes be the only thing that keeps me going! 

So if you hear me say how thankful I am that I am in remission … maybe you’ll understand that thankfulness because a life in a full blown lupus flare is just not much of a life.  Most days since I’ve been in remission have been normal … able to walk around my house and up and down stairs without pain … heck some days I can even run up or down the stairs like a normal person can and though a lot of times I need a nap to make it through the day, that’s not every day either.  I don’t take any of it for granted because I know that I could easily wake up one day and be back where I was.  For now, I pray that doesn’t happen and I thank the Lord every day that I living in a remission and am fighting this disease and not letting it control me.

No one can ever truly understand anyone’s pain, whether it be physical or emotional, unless they’ve walked in their shoes, but at least we can try!  So try to be understanding of anyone suffering with an autoimmune disease even when you can’t see the symptoms or understand why the symptoms come and go … just be understanding.