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Primary Immune Defiency

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Learn all you can about your condition.  Your doctor may only spend a few minutes explaining your diagnosis.  Do online research, order free publications from the Immune Deficiency Foundation, or attend a conference.  Knowledge is power - to be the healthiest you can be.

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Join foundations and support groups.  You can never have too much support or information.

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Arrive to your doctors appointments early.  Most doctors book several patients for 1 time slot so if you are the first one to arrive you will also be the first one to go home.

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Bring a list of questions and/or concerns with you to each doctors visit.  It is too easy to forget something otherwise.

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Think positive.  Prepare, but don’t expect to have every negative side effect or experience.  Remember, as you get to know other patients with your condition, that we are all different and may have different reactions and outcomes.  Go into everything with an open mind and just take one day at a time.  Always doing your best to stay well.

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Fear makes everything worse.  Practice relaxation techniques to cope with the fear and anxiety that can come with medical tests and treatments.

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Do everything in your power to be well.  Not many people do; this can make a difference even to those of us who are genetically challenged.

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Weigh risk versus benefit in making your decisions.  It is important to lead a life of meaning, especially when facing a serious chronic condition.  At the same time, not every trip, party or experience is worth risking your health for, so weigh what each means to you.  Be sure to try to do what you can from the top of your priority list.  Don’t let others force their priorities on you.  Healthy people don’t have to make the same choices, so don’t expect them to understand.

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Reward yourself, you deserve it.  Give yourself things to look forward to.  Being happy and having goals, dreams and plans can carry you through so much.

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Take one day at a time.  It is too overwhelming to look at each chronic condition as forever.  Keep in mind that the longer each one of us lives, the better treatments will get, so there is much reason to have hope.

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Take notes and find ways to remember important information about your condition and your infusions. For example, bring a good listener to doctor’s visits and use the IDF eHealthRecord to keep track of your medical history and infusions.

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Don’t compare yourself to others.  We are all on a different path in life.  It is easy to feel terrible when we compare ourselves with healthy friends or relatives.  Each one of us has something special & unique to offer the world.  Just work at being your best self.

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Living with PI can be hard but it can also help you develop some positive traits.  You will also have experiences you wouldn’t otherwise have.  Try to find the good that has come from your journey.

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Try not to lose patience when teaching others about your condition.  It can take time for those around you to take it all in and some may never get it.

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Stay on schedule with your infusions and all other medical treatments.  We all get busy but remember your treatments are giving you a healthier life.

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Always get copies of all your lab and test results.  You would be surprised at how often abnormal results are not mentioned when you are called back with results.  Also, if you need to visit an emergency room or another doctor, be sure you have recent results to show them.

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Try to schedule all routine tests & appointments when its not flu season.  Its hard when you have a number of specialists to see but it will lessen your chance of catching something from a waiting room.

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When traveling with your SCIG supplies by plane get to the airport early in case you are delayed by the TSA.  You do have to declare any medical supplies over 3 ounces. Be sure to have your medical supplies in one bag, with a doctors note.  You are allowed a medical bag AND a carry on bag.

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Know and respect your limitations but know that they may also change over time or with improved treatments.

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Don’t expect a whole lot of support or understanding outside the primary immune deficiency community.  We are raising awareness of PI one small step at a time, but the general public still knows very little about our conditions or how exactly to deal with us.  Some lucky patients are surrounded by people who are brilliant and have lots of empathy, but most of us remain overlooked or misunderstood by many.  Try not to let this make you bitter.  Instead try to be a model of how to treat others.
 
Joanna Tierno RMS, RMS Medical Products Bolg

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