When your first diagnosed with a “chronic” illness, life sure does change. I’m not just talking about the everyday illness. I’m talking about you really face an uphill battle when it comes to the medical institutions, the insurance companies, and figuring out where and what all the new terminology means. In all honesty, I was quite alone in this. I have always been a research nut. However, there were so many new, to me, vocabulary and scenarios. I had no advocate. It was quite the ordeal. Of importance: Do not give up! You have come this far, to turn back now.
Believe it or not, many primary doctors have not heard of this diagnosis. Specialists turned me away, telling me, that I was to “difficult” a case (yes, it’s in my records). I had no idea where to begin with getting my treatment, I was turned down, and turned away, and sent on many a wild goose-chases. I spent countless hours on the phone (Tip: Document all calls, date, time, contact and content), all in the attempt to get treatment. If your ever in my shoes, and you have
BLANK Health Insurance, if you can get rid of that God awful insurance, do so now. You never know, one day, this, or another medical problem will end the old life as you know it. Believe it, or not, the new you, will emerge. That’s left probably for my treatment blog, so I won’t bore you any longer. Life sure does change, in a lot of ways.
Through the process of the last year, I began doing specific research, not Google, or Wikipedia, but real, research backed by National Institute of Hearth, and other various, well versed entities. A leader in the field of CVID is Charlotte Cunningham-Rundles, I was able to hear her speak briefly at one of the national conferences this year. She is eloquent as a speaker.
Click on the link below for further research from Cunningham-Rundles:
Cunningham-Rundles, C. (2010). How I treat common variable immune deficiency. Blood, 116(1), 7–15. http://doi.org/10.1182/blood-2010-01-254417
How I Treat Common Variable Immunedefeciency Cunningham-Rundles, C. (2010)