April is Primary Immune Deficiency Awareness Month

year, we were visiting local plasma centers, thanking donors, and participating in the PI Community. When you feel isolated and alone, your entire life with illness and denial from all facets–it was only appropriate that there was a communal “ah-ha” moment where others identified…

Primary Immune Deficiency Awareness Momth is the entire Month of April!

 

Until next time!

IMG_4066

Infusion day

This is a weekly thing, never know how i will feel afterwards. Two years now. There are times I get so depressed and just do not want to infuse, go to weekly Drs appointments, tests, etc….over and over and over, rinse, wash, repeat. I wonder how many other people go through this slump. 

Planning Infusion day, and days of side effects (which are always unknown) really gets annoying to me. I don’t think anyone gets it.  Unless you are in our life, a person with A PI, you never will get it. That’s what’s so frustrating with organizations that supposedly advocate for us, they don’t have a PI. They have no clue what it’s like, how we feel, yet they earn money off of our illnesses.

WalkforPI

WalkforPI

First annual Walkforpi will be held in St. Louis!

This is actually a bitter sweet time, maybe I’ll fill everyone in later. I originally was extremely excited to bring the walk to our city…the excitement became disappointment, which has nothing to do with anyone or anything at that moment. However, I was originally not going to attend the walk due to several issues as well, I did not expect anyone to walk with me…..

you know, I would not even be writing this if it were not for someone out of the blue calling me and asking me about the arrangements for the walk. As I had not expected anyone to attend!

Myself, and my fellow peeps with our DX was/is the motivation, that changed my mind. WE will have this chronic disease FOREVER. Only WE can relate to the struggles, not any employee, organization, or even family.

When I mention family, I do not mean it in any mean way. As my family, the ones that I care about, support and love me. However, living with this type of illness is something that not another single person in this world can understand unless they have it.

I walk for my fellow civd’ers, and pi’ers, not another sole. There jobs, employment will come and go. WE will always have this chronic illness, for that reason alone, we need one another.

I was very happy when I heard that my daughter and my Neice actually want to attend! Motivated me to write this.

Praying the walk is a success, and more than anything, awareness is raised.

 

I’m Back for a bit…

I re-read some of the blogs previously written. It is now May. Sadly, we lost our beloved Sadie 11/14/15, life pretty much went from and to worse, after that.

A long and still occurring battle began in December and continues today with the health insurance company, Cigna. They have been a living nightmare. We have also moved,  yes, boxes everywhere, no energy and not much help.

Meanwhile, my daughter has undergone some very traumatic events. It’s takes all I have to help her not lose her childhood and self to the trauma. I pray so much for guidance with this. Amongst other occurrences, she has been apparently exposed to “to many adult situations–CVID included”. Yeah, that’s a huge slap in the damn face. Now I am a pathetic mother, not 3 times, but now 4. I can understand why some feel this way, and if and when she has researched CVID, It’s not good. I do not want her to know the prognosis, although we are all variable, and I do let her know that, and she can see with our meetings.

also, mutually fired another doctor, which stinks because now I am adding more stress to a bad situation. Interviewing certain specialists in the Midwest is unheard of, this particular type of specialists is so incredibly hard to find with crap pot insurance, and limitations, that if I cannot find one soon. I will certainly by hospitalized, but I will wait to near death fit that, as I despise any hospital.

 

 

Common symptoms that go Undiagnosed for Decades

Common symptoms of CVID and delayed diagnosis….by decades

Common symptoms that may help answer your questions about why your sick all the time:

https://primaryimmunepatientsunited.com/common-symptoms-that-go-undiagnosed-for-decades/?relatedposts_hit=1&relatedposts_origin=155&relatedposts_position=0