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21/03/2013 - evening


Thursday, March 21, 2013

As I was washing the pots this evening I was shocked to notice the tears streaming down my face. I feel that maybe getting this off my chest may help me feel better. This downer that I appear to be on may lift. My happy facade has its cracks and the more I try to hide them - the wider they seem to get.

Im scared. Thats the main thing. Nobody truely knows how long they are going to live, but there is this feeling that you will live to an old age, live to see your children grow, to meet your grandchildren even. I am under no such illusions, and it scares me. I know that there is a good chance that I wont reach the age of 50. That I will need a transplant at an early age. That theres a chance that they wont find a match for me in time. Its the most serious end of the scale - but its there. I know there is dialysis... but to be honest, that scares me to. Im 23 years old. I've never smoked, I dont drink much, until about 5 years ago I was healthy and the "ideal" weight then contentment and stress put some weight on me. Ive never done drugs. Yet I have CKD. There are people who abuse their bodies and never have a problem. CKD is mainly found in non-caucasian males over the age of 65 so my luck is pretty low/bad.

I have no support, my husband doest realise the severity of the situation (and wont take time off to come to an appointment with me) and he loves me the way I am. Which is lovely - but not good for my health. My mum is as bad as me and is always offering bicuits and such. My will power is virtually non existant at times and I crumble.

I want another baby. I would love to give Taylor a little sister (even a little brother would be welcome) but I have been told that there is minimal chance of being able to have any more children. This is adding to my down-ness. Especially with all the pregnancies and new borns around me.

I just feel worthless and pointless - like im a waste of someone else's perfectly good oxygen. Ive googled my condotion a lot. I know what my doctors arent telling me. Im on stage 4 out of 5. next stage = recognised kidney failure.

I realise that this blog is dripping with self pity, but in writing I can put the words that will never leave my mouth. I have to be strong. For my son, for my husband. For me.

Thanks for listening.
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Member Comments About This Blog Post:
ICEDEMETER 3/21/2013 10:20PM

    Yes, you have to be strong, BUT a big part of that strength is allowing yourself to be afraid, to be sad, to truly experience whatever emotions come with this. The "little miss sunshine and smiles" facade is not a requirement for dealing with this.

Another part of that strength is allowing others the joy of helping you. Let your husband in to the facts and the fears and the emotions, and let him truly be your partner in this. Let your family know what the true deal is, and let them know what they can do to help you avoid the worst case scenario.

I had to be strong when I was told at 16 that I had a potentially fatal blood disease and could never have children. I had to be strong when my first husband was diagnosed with and died of cancer when we were in our 30s. I had to be strong when I was diagnosed with cancer in my 40s. I learned that I had to allow myself to grieve, I had to allow myself to be angry, and I had to let others help me and lend me their strength sometimes.

Trust that you will do the right things to take care of yourself, trust that those you love will help you as best they can, and trust that you'll be able to work through the emotions and start truly finding the joy in every day again. Especially trust that you are a special and unique person who is needed and loved just as you are, and that the disease is just something you have, not something that defines you.

Strong thoughts and best wishes to you emoticon

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ALL-IS-AMAZING 3/21/2013 6:33PM

    emoticon You are dealing with a lot. Hang in there! emoticon

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