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Suddenly realized what all this will do to my life expectancy

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Posted 7/12/2011 6:18 PM (GMT 0)
Yesterday and today I couldent help thinking about the fact that my conditions commonly take 10-20 years off a person's life. What the infamation is doing to the parts of my body other than my joints.
What the new increase in MTX is doing to my kidneys. What the weight due to decresed mobility and meds is doing to my body. What the suppressed immune system might do to me.
I have considered all this before, but its just getting to me now. I might not see 60. My oldest would be 40. My husband might marry again.
My little sister just got it through her head that this is not going to go away. I am not going to be able to do the things I once did. The best I can hope for is to be able to do some things once in a while an hope not to decline too quickly. Her opinion is to stop the "awful" meds, medicate the pain and have a great time while I still can. Why spend years and years feeling sick?
I told her I am trading health for time, but its realy not that clear cut. Right now I have the choice in throwing a pitty party, or moving on without thinking more on this.
Posted 7/12/2011 6:33 PM (GMT 0)
Christina,

I am sorry that you are going through this. I think that this is the hardest part of any illness or chronic pain and condition.

The hardest part of what happened in my body is that this is life long. What will the future be like? When will I get to the point where meds no longer help and there is nothing anyone can do? Or worse.

Its easy to fall into seeing life this way, as you put it, throwing a pity party or moving on without thinking more on this. Only you can choose, not your sister or anyone else.

Either way, take care of yourself in the way you want to, to the best of your ability, and know we are here for you. I am sorry that there is nothing more that I can offer you in comfort.

Hugs to you today,
Mindy
Posted 7/12/2011 7:26 PM (GMT 0)
Christina...

As Mindy said, these are the hard parts that come w/ a chronic illness... and I think about these things, too.  I'm 38 w/ a progressive illness.  I know my body is far "older" with all my health stuff... And I do wonder about the future... the kids (especially having 2 brand new babies).... all that stuff... the same things you mention.

I wish I had more words of comfort... but know that many of us here understand and really "get" what you are saying.

Many hugs --Tina

 

Posted 7/12/2011 7:57 PM (GMT 0)
Christina, this is sure something many of us have pondered many times over, especially when you have been battling it for years. This especially hit me the hardest when in 2002 crohns disease took over my and took away life as I once knew it.

I am and have been consistently since then on two drugs that are new which have potential horrendous side effects from causing cancer to death. I had to really think hard about starting Remicade infusions every 4 weeks. It made me sick for 3 days and I usually was in bed those three days and then I would start to feel better. I could try the drug and hope it helped or stay either in ER, admitted to the hospital numerous times or spend the rest of my time in the bathroom. I ended up with Lupus induced by Remicade so I had to stop the infusions because I built up antibodies to the drug. I then went to Humira injections every other week with the very same side effects and still have the Lupus looming because its in the same class of drugs as Remicade. It became a quality of life issue with me in making my choice to to take these medications. Life is better with them, anything is an improvement compared to what life is without them. Its the same with all the other drugs to battle CP.

My family to this day is totally against me using the TNF blockers because there is no data available for long term use. I finally decided that since I don't have a guarantee I will be here tomorrow or the day after, I want to feel the best I possibly can while I am here. This theory has helped me maintain a little balance in deciding how to have some better quality life. I guess if I didn't look at it this way, I would have already put myself in the ground out of stress and fear of my choice. Try not to let this drag you down too much and enjoy what you can, life is too short. Hugs.
Posted 7/13/2011 7:15 PM (GMT 0)
In life there are no guarantees. A person who is very ill and not expected to live another year can see their condition improve for no apparent reason or benefit from a new treatment that brings about a cure. A totally healthy person can be crossing a street and get run over by a car and die instantly. Yeah, I know that sounds so cliche, but it is the truth.

I had an great uncle who was a farmer all of his life. In his 40's he was involved in an accident. He was mixing pesticides to spray on the crops when somehow a big cloud of the stuff engulfed him and he inhaled huge amounts of it several times before he could get clear. He wound up in the hospital in serious condition and he had several doctors tell him that IF he walked out of there he wouldn't live for more than a year or two because of the damage to his lungs.

For over 25 years he had to deal with a moderate case of emphysema, but he lived and he continued to farm. He finally retired from farming when he was 66 and passed away 3 years after that.
Posted 7/14/2011 1:38 AM (GMT 0)
Wow Jim. Thanks for sharing your great uncle's story. Bless his heart. I know what emphysema is because my grandpa lived with that horrible disease. Unfortunately my grandpa got it from cigarette smoking. He had been quit for 14 years when he passed away at 79 years old. But the thing is, he started smoking at the age of 6, so all those years of smoking had already caught up with him. I'm sorry that your uncle had to go thru that, but thanks for pointing out that we could live for years with this horrible cp and everything that comes with it.

I hope you're having a low pain day.

love and hugs
Loretta
Posted 7/14/2011 7:47 AM (GMT 0)
Hi Christina
Just thought I'd add my thoughts. I know it's easy to give good advice but another to live by it. No one knows what the future holds as someone mentioned. You can be perfectly healthy and die suddenly of many different things. I think the important thing is what we do with whatever time we have. I think it's better to focus on the here and now than try and anticipate what years down the road will bring. After all no matter who we are, the here and now is all we have and I've come to realize that every second I waste worrying about tomorrow I take away part of today. Anyway just my thoughts. Hope you are doing well. Take care .Stingray
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