When you live with a chronic illness, you must learn to be assertive, feel confident with your reasoning, whatever it may be– igg brand, tube rating, needle sets, a new illness, new doctor—-the most important part of this is the learning process. If you have a PI, or chronic illness—never, ever take the advice of anyone, in regard to your health as an end-all be-all….until you fully research your stance. Explore your options, most importantly KNOW YOUR RIGHTS. Please, this is key to standing your ground.
Most people blindly will accept what there insurance decides–DO NOT DO THIS! you have rights, and other options.
Also, medical field, there are excellent physicians. Not the case for most, especially with chronic and rare diseases. Do,not settle on a physicians decision, because you feel they know everything, they are human. Most importantly, you will need a good team of specialists hand picked by YOU. Do your research, on these docs, ask your PI community, before making appointments. Then make 3 or 4 appointments with the various specialties and Interview them. There will be times when you need to change a specialty, or add one. These are stressful times for me when interviewing, but the suggestions above will help you to feel more confident when deciding who is the best fit for you.
Also, you are not bound by any one igg brand, or route, you have choices! Did you know that? Did you know that if your on Medicare, that you can choose your specialty pharmacy? you are not stuck with whoever your given in any of the above.
Also, do not blindly believe any propaganda stated by any organization that purports to support our community. Again, do your research.
Everything above I’ve mentioned–common motivator: MONEY.
Most see us as their income, honestly, we are. Understanding the motivations of those will help you To understand why you need to be your own advocate. This will empower you, taking the power away from those seeing us as their income. Not accepting status quoe.And taking control of our health.
It’s hard at first, but if you lived long enough had a delayed diagnosis, you may feel beat down. Understand. Been there, still have those moments. Ultimately, there is not another human being on this earth that has lived in our shoes. You have a voice, use it!
this volunteer based organization can help guide you and I’ve received advice from them, and it’s free.
Primary Immune Patients United 