Two Years and Counting

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Two and a half years have come by quiet slowy and agonizing.  I have managed to come to terms with my diagnosis, even though I had lived in denial to friends and family whom i was not comfortable exposing all my sysmptons.I was afraid of losing relationships due to my exposure.  I am sure it has also been difficult too for close friends and relatives too in dealing with this.         

I remember clearly just like it was yesterday, when the doctor gave me the diagnosis, there was lots to take in, lots to learn to cope with the diagnosis.

All I said to the doctor is write it down and let me leave, but I reminded her I will not be your poster child for this disease, I will manage to beat all the odds.  

I can not confidently say I have beat all the odds, since My body has paid a painful price in the process. I have learnt a lot in the last two years, I guess after going into the hospital almost ever week or so and having to have almost ten vials of blood withdrawn from me, I had to learn to read  and understand the results as well.  I have also learnt with scleroderma, since my arteries and vessels are hardening up it is difficult to get a vein to withdraw blood, I now know the left arm is better, so I always have a bruise as well as a black mark on my arm left from the blood withdrawal. 

 I have also managed to somewhat live with the raynauds and the sensitivity to the cold.  For two years I lived in Ghana for two months in the winter to avoid the cold,this means I have not been able to work throughout the year in the last two years. 

It has been two years and I have gained a lot, I will not complain about the financial loss then, In the past two years, I have not had digital ulcers, the fibrosis in my lungs are clearing.

I had to use my humour and fashion sense too, My  good friend Ben in New York, realising I love wrapping myself in Pashmina's sent me every colour of the rainbow.  My sisters can not stopping buying me all sorts of coats and mailing them to me sometimes as far back as China. 

I have also learnt to do my grocery in two rans, I do the dry food section with such speed by the time I get to the frozen aisle am sweating and warm enough I can pick frozen food without freezing, I am now used to seeing people stiring at me when its summer and I have gloves on in the grocery store cold section.

The visual changes I have had are quiet minimal, and I have manged to reasearch and used hypoallerginc makeup to cover up all my imperfections. Once whislt in my favourite place "the hospital" amd one of the nurses heard I had lupus and scleroderma, she came in to chat with me.  She told me I was lucky I had scleroderma, I wondered why? and she said, "well you will never had wrinkes", I will say I took this painfully as a complement since I had to find something positive about this dibilitaing disease. I avoid using bar soaps since it dries my skin and use liquid soap and use lots of shea butter oil and high sun protection factor sun block to keep my skin moisturised.

I have learnt to live and address all the "uncomfortable questions" I have also learnt that I do not have to validate my condition when I am unable to perform certain tasks, neither do I expect people to think of any of my symptons as a disability, to every task there is  a challenge, and since we all intend to tackle each hurdle in our lives, I meet each challenge with an open glove.  My close friends have learnt to forgive me and understand when I can not make it to a planned date, or when I have to have a nap to rejuvenate my self each day after holding a regular job.

In the past six months after, I have managed to go back to work full time, and I am enjoying it again,  I have stayed to weather one of the harshest winter ever, and I am glad to say I managed to survive with the storm with the help of a new toxic medication.  and the side effects are quiet terrible which I dare not complain, since I am leading a life I lost in the past two years. 

I am surprised to admit freely, I have not felt ashamed to cry for My Mum during certain procedures such as the ever painful bone marrow biopsy. I had researched and knew it was quiet painful, yet I also knew it was imperative I had one to determine if I had Lukemia or lymphoma, I am glad to report I did not have any, and now have to live with some of the unusual side effects, A nerve was touch in the process and makes it uncomfortable to sit up right with my back to a chair.   Even with all these challenges I still remind myself of my Priorites being a Mother and friend to my family.  My fears of the unknown of having a crisis and not be able to recover, or have shortness of breath and not be able to drive myself to the hospital for oxygen, and worst of all having to go on "steriods and immunosppresants"  I have managed to address all my fears, and  ready to take a deap sea dive. You will have to take risks in life to determine your strengths and abilities.  I also know my faith in God and prayers has helped me in the toughest times.

At this time, I will like to say Thank you to each and everyone of you, For sending me to the health farm (Sogakope, Ghana) Healing services in all my friends churches,recommending pomegrante juice (an anti oxidant to help with my immune system), buying me all those wonderful wigs (to hide hairloss), Pashmina's (to keep me trendy and warm) Eye drops (For my eye infections), And all those larger size clothes and shoes (to keep up with my weight gain) And the best gift from my Little boy "Hand Warmers" (to put on my gloves to keep me warm) and the Long distance calls to check on me and pray with me each time I had to go in for results of test,  I honestly can not express my gratitude for each and every gift, even though  sometimes I was hesitant.  

 

I hope with everyone getting awarness from me hustling you, will enable you sponsor my cause, and have drug companies approve new drugs for this disease, since all the drugs now on the market were approved over fourty years ago. And yes, we have to borrow other diseases medication, such as using antimalarials as well as chemotherapy medications which are quiet effective yet could be toxic as well.  I hope my story motivates you to make a donation to Lupus Ontario or where ever you live on the earth, since it will be shared to better our lives.  I will leave you with some alarming statistics, hope it is a wake up call 

1 in every 200 people will be diagnosed with lupus.

1.500.000 million americans have the disease

90% affected will be women  in their child bearing years.

80% will develop the disease between the ages of 15 - 45

70% affected are systemic and most fatal. (I have systemic)

50% cases will affect moat major organs ( My lungs, digestive system, soft tissues muscles are affected)

10% will have discoid lupus( Seal, the musician was diagnosed in his teen ages years)

10% will have mixed connective tissue disease ( will have overlapping diseases)

20% of people with lupus will either have a parent,or sibling who will develop lupus)

5% of babies born to lupus parents will develop noenatal lupus

Lupus is 3 times common in Woman of Colour than their White counterparts.

1 in every 200 African American will be diagnosed with Systemic Lupus and are most likely to suffer from strokes and sizers, Even though there are preventative causes and also lots of research for the disease, there is still a lack of awarness.  The average life span after Diagnosis in 1950 was three years, but in recent years the lifespan after diagnosis has been raised to ten years upwards, Even with all the medication and research the death rate for African American women rose to 70%  

These are things that will make you go HMMMMMMM!!!!