In June here in Phoenix is the conference for the Immune foundation. It is my hope to attend. The scholarship covers almost $700 in costs. The other entry costs are not covered, another $150?. What do you think? I have never written a letter like this.
Read more HERE at the Immune Deficiency Foundation about the upcoming 2011 conference in Phx AZ
Hello and Good Morning
It is with a grateful heart that I received this request for an application letter to attend the upcoming conference here in Phoenix. It was so strong in my heart to attend the conference but I saw little way to make it so. With a very tight budget two wonderful (adopted) special needs children (10 &13) the idea of getting off to tend to my own health needs seamed out of the question. My sweet husband so wants me to attend and has expressed full willingness to do to my tasks if I were able to go. Even in that however the added loss of his hours along with the cost wold just make it all too impossible. So I let it go, asking a prayer if there were a way dear Lord to make it so.
I received an email this morning encouraging me to make this effort to request a scholarship to attend. With the scholarship the loss of income could be weighed as a good cost and investment toward good health, affiliation and encouragement.
I was diagnosed almost a year ago. With CVIG IgA deficient. A more complicated issue I understand. A nurse met at the physicians office the first infusion due to the threat of aniphylactic (sp?) shock. The vomiting on that first infusion was rather scary. Since then she has come to my home monthly to administer six hour infusions. I am blessed she is a wonderful nurse.
My diagnosis came at 49 years of age. Years of medical folks saying "It shouldn't" to me as if it were all in my mind. Sickness kept returning over and over. Years that came to a definitive point when anti biotic were at a twice a month necessity. With the kids health pulling strong and now after years of the intervention for them my health had even suffered more. Stress is an awful foe.
Last January my health was so bad. Within a four month period pneumonia and then bronchitis three times.
I thought I was dying. Truly I learned I was slowly dieing.
In late January my eldest sister and I were on the phone her taking her last breath in a hospital bed. She died of issues so odd that hit her all her life. Same thing was told to her year after year. "It shouldn't'' My niece held the phone to her ear and she passed away hour later.
I went to the doctor for my appointment's the next day or so. Telling him of her death and my fear. He looked at me funny and said he needed to run a few tests. The most amazing thing was that after 49 years of suffering he found it! He studied at a university that specialized in PI. He saw it. In my dear sisters passing I was given a chance for life. This a gift.
Infusions have taken some numbers of IGg from 28 on one line (of the lab results) to over 1000 in 11 months. My lymphatic system is almost to a low average range, it was gone. I had gotten very close to death. Now I turn 50 this year. My dignity restored. Now it is a resounding 'IT'S NO WONDER! CVIG caused so many issues all my days. The medical field was ignorant to discern it.
With the IgA thing little information is out there. I especially noticed the lecture on that topic.
My veins began to blow out after only three months. ER's for stroke scare over and over due to tiny , very tiny veins. Now I have a new port with a few complications. Strange to have this thing in my chest.
It is my utmost desire to come be with those who would cause this obscure experience to be less so. To sit and share a cup of coffee and be a part of those who would so identify and understand. To sit at the feet and humbly learn from those who have walked this path. To no longer feel as if I am walking it alone.
Thank you for your consideration
So what do you think?