Yolanda and Lupus

I am currently having a "hives-attack". I can feel my lips swell and tingle as the histamine ("demon juice") cruises through my veins, like a limousine on a well paved stretch of highway – smooooth! Once again my immune system has received a message that there is a foreign substance present in my body, and it sets out to protect me. I wish it wouldn’t always do such a good job, that it would be late for work sometimes or even better call in sick a few times. Why does it have to be so darn conscientious?

I look at myself in the mirror – lipstick is not appropriate at this time. As a matter of fact it would take too much of that stuff to cover the fuller than normal lips. My skin is dimply – there are welts on the surface. Not a pretty sight. The tendency is to scratch, but you are rewarded with more welts – they spread to the head, face and feet. My immune system can’t seem to find the enemy so I have to shut down the production of histamine manually with some anti-histamine medication prescribed by my doctor.

The medication the doctor has prescribed kicks in eventually and the “demon” juice is gone, itching subsides, you breathe a sigh of relief and wish that it would not happen again. But it does – over and over again. I’m waiting for my body to “kick the habit” of producing histamine as I really do not like it or appreciate it.

Anyway, it’s a lot better than the pain and suffering of exposing my fingers and toes to the cold climate up north. The first time my finger tips turned white and shriveled up I almost fainted at the sight of them. The toes - I couldn’t see if they where white but the pounding in my chest was from the fright of losing them in the cold, as often times I couldn’t feel them. Then, when I could feel them they would hurt as bad as they thawed; I would threaten to have them amputated. At least I would, or so I thought, not have to constantly live with the pain from being exposed to the cold. The condition has a fancy name “Reynaud’s”. My guess is that it is named after the poor fella that got it first. I can sympathize with him. Poor soul.

p>SLE “Systemic Lupus Erythematosus” is what I’ve lived with for approximately twenty four years now. I had my first flare-up at around twenty-three (23) years of age and I’m now forty-seven (47) years of age. When I had my first flare-up it came and went quickly. It never gave me the chance to have a proper diagnosis and you know when as a female you dare to show up in a doctor’s office talking about strange things on your body and you don’t have the proof the old fella starts writing your admission to Psyche. So when the hives went away I stopped talking. So I never did get to find out what was the cause.

 All lupus patients unfortunately share the same experience with not being able to get an early diagnosis. It took two subsequent flare-ups, each more intense than the one before and occurring about every three years, for the GP to pay attention. Now he had seen them and he had a pattern and besides I was totally knocked off my feet. So to avoid a mal-practice lawsuit he (the GP) referred me to other doctors to see if they could do a better job. Guess what – they all stunk. Poor bedside manners and they talk down to me. The talking down to me got me. I thought the guy was going to prescribe me a soother, crib and nanny. He was pathetic. You know the rehearsed line “take your medication and if it doesn’t work, come back and see me”. We just did not click – no working relationship. As a matter of fact, you’d think that I was not in the picture half the time.

 It is important to put yourself first, to do things that bring you inner peace that improve your spirituality, soundness of mind, to soul search and to share. Sounds selfish? Not at all! In order to take care of others around you, you first have to love and take care of yourself. By demonstrating love for self you are able to extend that love to others. By thinking of self you are able to set boundaries, accept limitations, accept assistance, release, let go, not take yourself too seriously. Through thinking of self you create an awareness that prevents you from doing harm to yourself, from neglecting yourself.

Being diagnosed earlier on in life has been a blessing in that I’ve not taken anything for granted. For instance, you will never hear me say that I am “waiting until I get old or saving for old age”. The reality is that I might not have an old age. While I will not squander all my savings I am also not under any illusions about living to a ripe old age. If that happens I will consider it a bonus and be thankful; but, for right now my focus is on the now. I have a moment I can seize it and enjoy it.

When I was first diagnosed a guy came up to me soon afterwards and started to pity me. I quickly turned that situation around. I told him that knowing what I would most likely die from was a reward in itself as I now know not to waste time on the small stuff. I went on to tell him not knowing might lead him not to take full advantage of life. Basically, people that do not have a chronic illness take a lot of things in life for granted and end up full of regret. We have an advantage over the “well ones” we live now and we do not want pity as we have too much going on to waste time on a pity party.

Concentrate on being yourself. Increase the positive benefits and pleasures you can get out of life. Never worry about comparing yourself with somebody else. There are absolutely no benefits to that besides you might later learn that they are worse off than you are as we all know that we will all die one day but some of us never saw it coming.
Set reasonable goals for yourself, consider the things you have and how you feel. 

Try to build quality into your life and not quantity. The arthritis (joint pain) will take care of the quantity. Less is better in every aspect. Get rid of the clutter, downsize. Let friends and loved ones in - talk about your feelings with the people you’re close with. Don’t avoid facing up to the fact that you have Lupus otherwise you won’t be able to get to the next level. You might even need to educate those closest to you. Do not be discouraged by uneducated comments use the situation to your advantage. Share. Release, surrender, mourn the loss, pick yourself up, dust yourself off, accept and move on.

Finding it difficult to move on? You might be grieving. Grief is like a deep infection. The only way to healing some infections is to open up the wound and letting what’s on the inside ooze out.  It may be painful, but eventually the wound will become completely drained and begin to heal. Keep working on your commitment to self. Do your part. If that’s not it find a doctor that’s nurturing and supportive and most importantly knowledgeable about Lupus. You need to prove to yourself that you can live and be happy, even with Lupus.

I eventually became frustrated and panicked as my diagnosis was taking way too long. That’s not good. Too much emotion. Lupus thrives on negative emotions – stress. I could picture it like a man about to haul in the mother-load, rubbing the hands together and licking the lips. Ah ha gothcha! I needed a quick diagnosis and a fix-me-up; let me get back to a normal life. With that I changed doctors frequently. I finally caved in and agreed to be patient with a doctor who came highly recommended, at least more highly recommended than the others. He did it. He was the one that called it by name.  

I knew it was not good news but in a way it was great news. It now had a name and besides I was happy to hear that I was not mental. Though Lupus is a disease that can have serious consequences and there is no known cure at present, I was relieved to learn I have Lupus and not some of the other diseases out there. Sounds crazy? With no known cure I knew straight off that Lupus and I were going to be “buds” for a long time. But the truth is I took it like a trooper and made a pledge to myself to learn as much as I could about this enemy. I soon realized that it was not only up to the doctors, but it was also up to me to do my part.

I am quite content these days, in spite of the hives, to live with this disease daily and to take care of myself. It is a manageable disease, meaning there are consequences for not following the right protocol like: getting too much sunlight, not getting enough rest, being too stressed out, not taking your meds, etc. Lupus does not wait for you to adjust your lifestyle – it will, if it has to, do it for you by knocking you off your feet. Oh yes, Lupus does not fool around it is like Mohamed Ali – it can pack a serious punch and knock you out if you are not paying attention to it.

Normally, our immune system will outfit our body with boxing gloves to protect itself from infection. However, in the case of Lupus some rogue immune cells grab the boxing gloves and attack good tissues. That’s like outfitting a three (3) year old boy with boxing gloves – there goes the cat’s head, dog’s eyes, the glass top coffee table, oh gosh the TV. Every thing around the house is going to be broken eventually unless he is stopped! In the case of Lupus the body outfits itself with antibodies that can destroy the body’s blood cells, organs and tissues. These antibodies lead immune cells on an attack. Unbeknownst to you they move around your body, stealth-like looking for your healthy organs and then they pounce. Attack! What happens next is you are told you have a chronic long-term disease, an enemy for life – Lupus!

The older folk always gave the advice that if you cannot beat your enemy, then you should join your enemy – that’s the same advice you can use for Lupus. It does not care if you love it, it wants your respect. If it does not get your respect, it plays games with you such as senior moments, joint pain, kidney failure, headaches, just to name a few of the games that you will neither win nor enjoy.

On the other hand, if you educate yourself and pay attention to your body you will benefit greatly from the knowledge. It will allow you to redefine yourself and enjoy life even though you will have obvious limitations.  The key is not to focus on the disease but on what life you have left and seeking always to do what is right for you. Seeking inner peace helps as well.