Let's talk Immuno deficiencies

[Jiggers]

Some of you here have known me personally for quite some time now and know a rough idea of what I have to deal with everyday from a medical stand point. There are a lot of you who visit here that I don’t know, that also have immune system disorders that maybe you’d like to share and teach us something that I, or we, may not know about. You don’t have to use your real name if you don’t want to. It’s like a chance to get it off your chest so to say. Like group therapy. I for one have never produced natural anti-bodies in my life and wasn’t born with a immune system. It’s not easy being me with all the related medical complications and BS that try and slow me down on a daily basis. I’m pushing 49 years old. Not bad for someone without a natural defense system I have to say. I try to be as functional as I can and not let any of my permanent conditions stop me. I have to get infusion treatments done at Virginia Mason two to three times every 45 days( 3 hour stays) to help strengthen my immune system. The treatment isn’t a cure and there is no cure for me. I have been doing infusions for almost twenty years now and will need to do them for the rest of my life. Its simple. If I don’t do them, I can/will die. There is a term that my Doctors call my very rare disease, but there are dozens of ongoing underlying complications that wreck havoc in me. I’m also thinking about writing a book on my disease because simply there isn’t one out at all. My condition is associated with more people who are of Asian decent and Doctors have discovered more cases across the big ocean than here on the Continent. Its hard to talk about yourself and the pain you have to go through because you just feel crappier when you think about it. But lately I have come to terms with myself, and hopefully something good will come out of my experience with this disease, and maybe it will teach somebody something new. Any thoughts?

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[JanS]

While what I have is different in many ways, I , too have a rare disease, an autoimmune disease that killed the kidneys, basically turned them into scar tissue (it has a really big name – lol). No known cause, no known cure. Sure my immune system is down, but totally not like yours. I can’t imagine how hard it’s been for you, and my life ain’t easy. I’m hooked to a machine 3X a week for 3.5 hr each time, so your infusion treatments ring a bell for me, too. I’m pretty much matter of fact about this. If I stop dialysis right now, I would probably live for a few weeks, a month tops. It all stops and makes you think. But…I’m upright, and can work part time, and I’m slogging through.I know you are , too. I sometimes wish for that magic wand to make everyone I know whole…you, my friend with MS (also incurable), and the many friends that I have with cancer, me, all those I see at the dialysis center. It’s overwhelming at times. Oh, for a “normal” life, huh, jiggers? Whatever that might be :) Hope things stay positive for you – I know it’s been no picnic for you.

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[JoB]

you are a talented writer jiggers. write your book.

if you bring the same passion, perspective and humor to talking about living with this illness that you bring to your sports writing.. your story will interest people..

and if a book seems like too much.. start a blog .. one essay at a time… writing about whatever you feel like that day/week/month..

write about your life..about music and sports and growing up hawaiian… after all your illness is only one part of your life. you may have had to accommodate it.. but you haven’t allowed your illness to define you.

i personally believe that that is the lesson that both those who share your illness and those who judge without understanding the impact it has had on your life need to hear.

write what you can when you can and it won’t take long before what you have written can be reorganized into a book with structure and purpose.

i might even know an editor or two who would take on that project without inserting themselves into your story.

if you create a blog and post a link here.. i will read it. if it becomes a book, i will buy it.

i read some of your sports pieces because they are well written and entertaining. ..

and you know i don’t follow sports.

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[Spring Chicken]

Jiggers, you are my favorite blog/forum person, I would buy your book!

Thanks for being here and for sharing your story. I was lucky not to have inherited the nervous system disorder that runs in my family, but have seen firsthand how difficult life can be for people with chronic health problems. Each new day brings hope that a cure is discovered soon.

Take care buddy, keep on writin’….

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[blazeember]

I don’t have autoimmune but I AM working very hard not to develop one as I get older and my system does not handle stress well. I see this happening in women around me as we age. More from the writer’s perspective, as a fellow writr, I want to say if you feel you should write something then I hope you do. It is a calling…

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