Living with Primary Immune Deficiencies

April27

Every time I think, hey I feel fine, I’ll get back to work, I’ll, I’ll, oh damn, another infection… third one this year (the other two were Staph.. a new adventure)… I say, its ok, you are ancient in terms of primary immune deficiencies… 49 is more like 85 for you so you ARE doing great… and I say, you are so lucky, look how long you made it so far and if you were in a country without health care or antibiotics you’d be long gone… and I say get out there, take risks, not too big, but enough to still ‘have a life’… don’t let fear rule, sure bugs may get you, they may even kill you, they will certainly send you another round with antibiotics and sooner or later, yes, that will take you closer to more rounds with cancer but really the biggest danger is none of these, it is ‘giving up’, it is ‘quitting life’ and all its interactions, it is losing investment in personhood.,,, and so… another day, another adventure, another chuckle, maybe a cry and that too is another ticket spent in the amusement park of life… bring it on… life is for living.

Donna Williams
http://www.donnawilliams.net

UPDATE: turned out to be ‘just fungal’… guess that’s a muted hooray…. don’t have to do another antibiotic yet :-)… on the other hand its part and parcel of the plethora of fungal infections that those with PID live with… in my case subhorroeic dermatitis of the scalp and ear canals, fungal sinus and lung infections and of course the old favorite, oral thrush which causes me asthma for good measure… or challenge, or entertainment… writer’s fodder at least! Ode to a fungi???

biopsy on Monday, got another leg lesion… doc isn’t sure, might be Bowen’s Syndrome… a syndrome of in-situ squamous cell carcinoma usually on the lower legs, common in immune deficient folk… found early no biggie as it can take weeks… but ignored these can suddenly come out of dormancy and go into lymph… that’s the road to shit street so I don’t want to go there… a quick freeze will fix the bugger but we’ll biopsy it so if any of its friends show up we know what gang they represent. Makes me a little worries, because we all have squamous cells inside our bodies too… so if someone like me has them get funky and misbehave I hope the ones inside don’t do so! I can’t exactly stick my head up my butt to check!

posted under Donna Williams, health, psychology, sociology

19 Comments to

“Living with Primary Immune Deficiencies”

On April 27th, 2013 at 1:02 am Jennifer Henry Radcliffe Says:
Donna Williams, my cousin has primary immune deficiency, she has had IV infusion therapy to replace IgG3 and 4 since the 3rd grade, she’s now in her mid-20s. Has anyone told you about this? It really works!
On April 27th, 2013 at 6:13 am Donna Williams Says:
hi Jennifer, because my immune deficiencies are white cells, Complement C3, IgA and IgG2 I’m not the typical candidate for IvIG. I was also deficient in IgG4 at one point but they tend to use IvIG for those deficient in more than one of the IgGs and contra in those with IgA deficiency. If I go deficient again in both IgG2 and IgG4 they might look at it again… but they’d still be cautious with me because I’ve had a history of NO IgA (presently deficient but at least have some).
On April 27th, 2013 at 6:14 am Donna Williams Says:
http://www.cidpusa.org/ivig_complications.html
On April 27th, 2013 at 6:15 am Donna Williams Says:
Patients with primary antibody deficiency syndromes may be at increased risk for reactions. Anaphylactic reactions induced by anti-IgA can occur in individuals who have a total absence of circulating IgA and antibodies to IgA.
On April 27th, 2013 at 6:15 am Donna Williams Says:
Because the combination of the absence of IgA and the presence of anti-IgA antibodies is infrequent and reactions are rare, screening for IgA-deficiency is not routinely recommended for potential recipients of IVIG.
On April 27th, 2013 at 6:15 am Donna Williams Says:
and my IgA deficiency is genetic
On April 27th, 2013 at 6:16 am Donna Williams Says:
so not likely to buggar off soon
On April 27th, 2013 at 6:17 am Donna Williams Says:
there are different forms of PID and unfortunately not all can be treated with IvIg. bit of a buggar really
On April 27th, 2013 at 1:00 pm Jennifer Henry Radcliffe Says:
Sure is a buggar. Sorry that it can’t help.
On May 3rd, 2013 at 5:11 am Sherry Lee Says:
You are an awesome writer! I discovered your book today through Dan Irelands site. God Blessed You
On May 11th, 2013 at 12:01 pm Lana Nikolic Says:
Hi Donna,
thinking of you, hope you feel well xo
On May 13th, 2013 at 9:45 am Jacqueline Roump Says:
Hi Donna,
I sincerely hope you are feeling better.
Have you heard of the GAPS diet? It is based on the SCD diet with improvements.
The goal of the (temporary) diet is to restore the gut flora and so the immunity.
It was perfected by Natasha Campbell-McBride for her autistic son.
She wrote a book about it: Gut And Psychology Syndrome.
She also have a web site: http://www.gaps.me.
Other sites of interest:
http://www.gapsdiet.com
– all the details of the diet
http://www.gapsguide.com
– very useful too
I am on “Full GAPS” now, before trying the introduction, this is the best way to do it (not jump on the Introduction Diet right away).
I love your site. Cheers.
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