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Life's a bitch, and it kicks like a mule :-(


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I've been with the girlfriend now for nearly 14 years, and we have 2 beautiful daughters, one, Samantha, is eight on Christmas Day, the other, Ronja is three 2 weeks later. Kirsten is 34, and even though she has had quite bad epilepsy since she was about 7 years old, she's been a wonderful mother to them both.

 

Since Samantha was born, Kirsten has had a lot more medical problems, and after Ronja, it got even worse, her eyesight has got very bad, she has big problems with her joints, and now suffers from severe migranes, which bring on bad epileptic seizures. She just brushed it all off and took it in her stride, but she finally listened to friends and relatives, and went to the doctor for tests.

 

Well, the results came back today.

 

She's been diagnosed with Systemic Lupus Erythematosus.

 

There is currently no cure.

 

The doctor told her that she will probably be totally blind within a couple of years, and they have no way of knowing how bad she'll be physically, but she definately will deteriorate, probably needing liver transplants due to the high dose medication she'll be on for that and her epilepsy, and whilst it's not a death sentence, it's certainly a possibility. Lupus kills one in twenty within the first five years from diagnosis, rising to one in four within 20 years, there's no proper figures over 20 years yet.

 

Even after being told all this, and a lot more, she started to make jokes about being able to have a "white dog and a blind stick", and knowing all along that she was a bit Psycho. Right now, we're keeping it away from the girls, they don't need to know for a while, and Samantha probably wouldn't understand yet, let alone Ronja.

I haven't told her yet, but I decided earlier today that with the money I'll be getting from my house sale in Wales (around 200K), I'm going to take her to as many as possible of the places in the world that she has said over the years that she'd like to visit, while she can still see them.

 

Kirsten and the girls are staying at her parents place this weekend, and I'm not working tonight, so I'm spending a little time on my own with my second best friend, Glen Fiddich. Here's to the future, it's going to be one hell of a bumpy ride.

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Very sorry to hear about Kirstens illness, but you have my full respect for what you are trying to do for her. Many people would just give up and roll over, but she is coping with it in her own personal way of making it light hearted & joking about it - she has got guts for that & sounds one strong woman. I wish you all the best with your plan & hope that you can both enjoy what you are trying to do for her before the inevitable happens with her sight. My thoughts are with you as I am sure most of the members on here will be. :Thumbs_Up1:

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DJ,

 

I am sorry to hear about her problems and I think it is great that you want to try and make her life as pleasurable as you can.

 

My neice has had Lupus since she was eighteen. It is a bad disease, but she has survived for twenty-seven years and is still doing well. She has had many surgeries. Both shoulders replaced, both hips replaced and recently she had to have her ankles fused. I know she has had more surgeries that I can't remember right now. She has turned her care over to another doctor recently and seems to be doing better. I will try and find out what type of doctor she is going to now, but he has seemed to stablized her disease. I do know that people with Lupus should stay out of the sun, so you might want to get Kirsten to be aware of that.

 

heavy1

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  • 3 weeks later...

This is sad to hear DJ and my thoughts are with you and Kirsten right now. A friend of mine has just lost his daughter to Lupus but she had it all of her life to be fair. It is good to see you are both being positive and the plans you have with travelling are a brilliant idea! Try and remin optimistic as they discover cures daily for all sorts of illnesses.

Kirsten had a great supporting husband in you and 2 fantastic daughters, she will get her strength from that.

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  • 2 weeks later...
  • 2 weeks later...

Hello Pal, my mother had Lupus, she fought it every day for years and she still carried on, sadly she passed away this year but it wasn't Lupus that killed her, she was always strong and mentally tough and on many occasions got the better of the Lupus. Stay strong mate and best wishes to you all!!!

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Hi DJ, happy new year m8 (if that don't sound too sick), just a small heads up on something i have just seen on BBC1 breakfast TV this morning they were talking about meditation and how it had helped some blokes Mrs/GF she has Lupus as well (they called it just Lupus, so don't know if it's the same as Systemic lupus erythematosus or not) but the upshot was spending 10-30 mins a day was helping his Mrs/GF with her pain, personally i think it's a load of old bull but i'm not suffering from Lupas, it may be worth looking at after all you have jack sh1t to loose m8, also with migrains I've had them since I was 7 after getting meningococcal meningitis nothing worked for me untill I tried some medication called "Imigran" which does work a treat it comes in 50/100mg pills, injection and nasel pump, I have no idea if she can use them or not but at least bring it up to doc there based on a group of drugs called "sumatriptan".

As i say just some info for you m8, good luck buddy, and if we can help further just let us know.

 

 

All1

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