In the words of Gloria Gaynor …

I am Rosamund Mary
I was born on the Isle of Man
I was adopted when I was 12 weeks old
I have a rare form of Von Willebrand’s disease
I have less than 3% Von Willebrand’s factor
I have less than 1% factor 8
I have injections to replace the clotting factor and stop bleeding
I learned to do them myself when I was 14
I started my periods when I was 13
I would bleed for 3 weeks out of 4 and then start all over again
I have taken hormone pills ever since then to keep the bleeding under control
I have always had acne on my chest from the hormone pills
I used to have horrendous period pain every month
I once had to stop my car and knock on a strangers door for help because I was blacking out from period pain
I now take hormones continuously because it’s safer for me not to bleed
I was given Hepatitis C from contaminated NHS blood products
I was probably exposed with every injection I had in the 70’s and early 80’s
I had on average 1 injection a week then to control bleeds
I was not told by my specialist about my infection with Hepatitis C
I found out by accident at another hospital
I had a 12 month and then a 6 month course of treatment for the Hepatitis C
I had a biopsy before the 2nd course of treatment
I lost six pints of blood and nearly died after a bleed in my liver
I discovered just before I got married the Hepatitis C was no longer detectable in my blood
I have been ill with chronic fatigue ever since those treatments
I now have on average 2 injections a week of clotting factor to control bleeds
I have been exposed to vCJD
I have been unable to work since 2008
I have been unable to have children because of my ill health

I am what I am
I am just right
I am all this
I am me

0 thoughts on “In the words of Gloria Gaynor …

  1. Now re-write that but with the addition of the positive things in your life, you need to stop dwelling on the negative and concentrate on the positive, believe me you would feel a lot happier if you did.


  2. Now re-write that with the positives in your life. You need to stop dwelling on the negative and concentrate on the positive, believe me you would feel much happier and healthier if you did.


  3. That's very thoughtful of you McLeod but my point in this post is that I am absolutely fine with all that. I am me. I am happy to be me warts and all. The piece is about acceptance and peace, not about dwelling on the negative and so getting depressed and more ill. I can assure you that my outlook on life is not negative in any way and if you knew me in person rather than solely through my blog, which I do use to expunge the nasty stuff and thus remain sane, I hope you'd see the positivity.Apologies if this came across as unhappy and negative cos that wasn't the intention and isn't the case. Many thanks for your concern however xx


  4. I don't see Ros's words as negative. I see them as an account of the many medical challenges that she faces, stated in a neutral and matter-of-fact way. That she goes on to say “I am just right” demonstrates that she's in full acceptance of the situation and to me, this is a sign of great strength and a positive mental attitude. Acknowledging the facts, such as they are, with no negative spin, is in achievement in itself in my view.Ros, keep up the great work with your writing. You're a very strong woman with a great turn of phrase and exactly the right approach to your illness and your documenting of it.


  5. Rosamund,As you perfectly said, “I am me”. Acceptance opens doors. Your validation that you accept what comes your way and you still have more friends that most of us tells us we all love you for exactly who you are. I am the stepmum of 2 girls with severe factor V deficiency. I think I know how to spell FFP backwards and forwards in my dreams. My journey has brought me to you. I am tickled to know you and your funny blood.Cheryl


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