Take Time Out To Discover Who Lupus is to You....

Diagnosis Lupus:

Treatment; Self Acceptance & Quiet Contemplation Begins

On January 31, 2011 I was diagnosed with Systemic Lupus Erthematosus or SLE Lupus a disease that one can’t pinpoint to when it came to be a part of my life but through previous journal entries I have expressed to you the signs I feel over the course of my life were the beginnings of a disease I would soon learn has no rules, has no time lines, has no rhyme or reason but very much lives with you. It starts if I may compare it to a; like a jigsaw puzzle of many scattered pieces of clues by which you could spend a lifetime not recognizing; not being heard by doctors; or even sometimes so unseemly related they can’t direct doctors in the right direction. So you go through this life carrying around like sentimental little pebbles from your earth’s crust in your pocket until one day your pockets overflow and it moves to a cigar box of tiny treasures. You don’t know why you hang onto them but something instintively tells you to so you do. One day as with any disease the body sends out a very loud rumble not just to you but to the doctors and when it does you rush right away thinking “Oh – please fix me!” Only with Lupus as with many other auto-immune disease even that loud rumble isn’t clear enough to discern the reason why thunder just rolled through your earth’s core. You’re left to wait out a storm you don’t understand, you’re left to wonder why a doctor can’t give you some answer but as you’ve done across time you add this too to your little box of treasures.

The little box eventually becomes as overwhelmed as you are – by this time you have lost faith and hope in ever finding out what is wrong with your personal earth. You pray though you think no one hears, you cry because of the humiliation you face each time you go to your doctor and they console you with meds and words you don’t comprehend then mark it in your chart that you seem to have some psychiatric issues underlying because  your tears aren’t seen as frustration or fear but an irrational human being who can’t accept what this doctor has told you. It’s a pain for journey for both your body and your mind but – “Look – please look at my box of my earth’s pebbles – there’s something here I promise you” . You’re sent away yet again and again until one day; one doctor opens up this little box and examines all your little trinkets you’ve saved across time and she in my case chooses a different path – she starts to go through the little pebbles one by one and promises to meet you in two weeks to discuss your blood work results and what she thinks the story of your keepsakes tell her.  You return and upon that return she finally answers the ages old question with a real answer.  You have Lupus.

You’re so happy to hear that your disease has a name; to the point you don’t hear much after that other than what the plan of action will be. You’re in tears – you’re overjoyed even though what you have is incurable – it’s mysterious, it’s a very scary disease that can do whatever it wants whenever it wants but despite that you have a real tangible reason for the years you carried on trying to find out what it was that made your earth off kilter.

Though I have had signs here and there throughout my life it wasn’t until early 2008 that I began to quit accepting doctor’s inadequate explanations and I went from doctor to doctor to doctor until I found my saving grace; the doctor who dug deeper and found the answer; “Yes, my diagnosis is Lupus”. Everyone will take hearing this a different way; everyone will deal with coming to terms with their disease a different way all I can share with you is my way.

To start to me this was the most positive thing I had heard for 3 years – it was something I could sink my teeth into and fight regardless of what it can do to you in the long run. It was because of this positivity in hearing I wasn’t crazy; I wasn’t imagining things that I chose from that step forward to continue to always see this through with the highest regard of positive thinking I can manage and trust me – I burst the mercury in the thermometer gauge of positivity.  Keep in mind there’s a high road and a low road to everything you do in life; the high road for me is to face this with a positive outlook instead of seeing even remotely a sign of a low road that is paved with negativity. In doing so though sacrafices have to be made; changes in what is most important and necessary have to be made in order to remain on the high road.

The first step - Prednisone – a true salvation for Lupus patients because it works on removing the masses of inflammation from your body that is part of what creates the pain you’ve lived in for years. I was started on 40 mgs a day and am working on a taper down effect – I’m still on 30′s; this Wednesday will be two weeks but because I couldn’t handle the 10 mg jump down which threw my body into a flare up right away my doctor has decided to keep me on 30′s until prob. Monday a total of a week and a half then I drop down to 25….and the schedule goes on until you’re Prednisone free. This is just a temporary solution due to the damage the drug itself can do to your body over dosage and length of time used; to a life long problem, so the next step is finding a life long drug that will tame Lupus. For me its a drug that treats Malaria; hydroxychloroquine, Plaquenil – if it’s a drug that works for me as it has for so many others it follows suit to being the one drug doctor’s can’t tell you why it works it just does. I started my first dose today. It’s been kind of a tough day as I’ve felt nauseated and have hurt a great deal – keep in mind the hurt doesn’t go away right away when you pop a Prednisone it takes time as well and as my doctor has told me I might not ever be pain free. Only Lupus knows the answers to this.

Follow Your Shadow Dancers

In the short two weeks that I have known I have Lupus I have learned one graven thing about this disease; Lupus Owns Time Owns Lupus and Lupus controls time from the onset of a grain of sand in an hourglass to the gravity by which it is pulled through the slender tunnel. A tunnel that if you took the low road here doesn’t look so go but if you took the high road you think to yourself  “that’s a lot of sand Lupus owns and a small hole it must go through” so though Lupus owns time it doesn’t have to own you. Does this mean you will always have good days – NO but its what you make of the good days that is what will keep you positive that and too I’ve learned of shadow dancers. I’ve mentioned them in my other posts but a shadow dancer is a person who has had lupus and is living with Lupus positively. Your shadow dancers will become invaluable to you especially during this time of self acceptance; the changes your body goes through as you try the meds and on those days just out of the corner of your eye you can see a glance of the low road below you and maybe your positive levels aren’t as high as they could be. Your shadow dancer is who you will ask questions to – and no they aren’t doctors but they are experts in their field – why because they’ve walked that mighty mile you’re walking now. But even shadow dancers have shadow dancers and some days you because you chose to stay on that high road with them; some days you will be their shadow dancer, they may seek comfort in just knowing they aren’t alone in their disease, they may have gotten some negative news and need to have a hand to hold so one thing if I can advise anyone with any disease is to find yourself a shadow dancer or two or three or four – there’s no limit

I am fortunate in knowing someone with Lupus; actually I know two people with Lupus but one I’ve lost touch with because she moved away back when we were kids to another state. But in knowing someone who has Lupus that I can ask questions of and get a real genuine response from experience and understanding makes all the difference in the world – especially right now. Especially right now as I have started already on my journey to acceptance and quiet contemplation. I think anyone with a choronic illness will take these first two steps and should take them. It is not just necessary it is vital if you wish to stay on that high road.  Trust me when I tell you as you step up on that high road of positive vibes and staying positive shit happens that is going to bring negativity into your life but in spite of that negativity do not forget you just took that step – do not forget where it was you were heading when you took it and keep your head high looking ahead at your shadow dancer before you who’s going to show you how to get down this road.

I hate to say this part but its a must if I am to be truly honest in my journey. I have chosen as I have said to take the high road and the first day I took the first Prednisone is the day I put all my faith in the power of positive thinking. I’ve also displaced myself into a world where Kristy stands back and quietly contemplates the things in her life. Take this time for yourself – if you don’t I can’t say to you that you will be able to stay on the high road because the negativity in denying yourself this time for self acceptance and quiet contemplation of the the greatest most important things in your life could literally leave you in a stand still; not knowing how or which way to turn to ensure you stay on that high road of living positively with Lupus.

There are going to be people in your life that don’t like this – there are going to be people in your life who want to remind you that you have an incurable disease or treat differently because of your disease; some of it is with good intentions, some of it is out of wanting to be the one to make you all better and some of these people you won’t understand why they can’t understand why you are changing and coping and choosing not to be negative – my theory for my own life is that they are feeling left out and don’t like that feeling but the truth is sadly; it’s your body; it’s your disease; it’s your future and your life and only you can be at the helm of this mighty ship on a great ocean of uncertainties. It’s not negative to take this time for yourself or to come to terms with your Lupus alone if this is how you choose to do it so long as your outcome carries you forward on that high road of positive thinking and positive fighting in the emergence of self into acceptance. I’ve been actually shocked during this process that I am still going through and will go through until I feel strong enough in my acceptance that I know I will never stray from my positive light – from my shadow dancers and from life. What has shocked me most in my life are the people in my life who have responded to this time I’m taking – the ones I thought would respond well haven’t – the ones I never thought would have. But it is in this shocking awareness where I learn where positive breeds positive and negativity breeds negativity.

I’m enjoying this time with myself immensely – its truly the first time I’ve honestly taken it to the level and power it can be taken to. Yes, I faced my own mortality when I had a massive heart attack at 36 but now I suffer and probably always will PTSD Panic Disorder because when that happened I thought I had done all this then only what I did is hide my fears inside and went on with just an attitude of “loving every day you’re on this side of the green grass” – as good as that sounds it doesn’t exactly work that way instead a vicious monster rears its head and great fears and negative vibes outweigh the good. I am proud of myself for taking this time – for truly seeking my truths, my disease, my fears, my happiness in knowing what I have so at least it can be treated, for finding faith, courage, hope and love enough of my “self” to love me with my disease enough that I can remain forever on a high road with shadow dancers who will always be there for you – you for them so that you can always be the best person you can be by remaining positive – so I can live a very long and happy life with those who love me and I them.