Onward through the fog....

     Well, so far I have had no responses, but it will take a bit for me to learn the ropes of blogging and hopefully get this out to the people that need it the most. It's a bit like the sound of one hand clapping right now, but I can't let that stop me. That way when someone that needs information or a source stumbles upon the site, I will be here and ready to help answer questions or just listen. It's not hard coming up with subjects to talk about, so this is me keeping onward through the fog.
     Today's Bitch: The Rain...so, are we sick of it yet?  One of the many variables of CVID is the pain. This can strike because of many reasons. For me, it's RA, osteoarthritis, osteoporosis and many spine problems due to herniation's and bone marrow that has been eaten up by the CVID in the spine area leaving me a very damaged spine. All of these combine to make it a hellish time especially when it rains.  How many of you have this problem?  Do you have help at home to assist you through your ADLs?  (ADLs are Activities of Daily Living, one of the main quantitative ways your doctor, the state and any outside source decides your daily quality of life and any extra care you may need in the home).  Have you sought help with any problems you may be having due to the degree of difficulty you have with your ADLs?  Quality of life with CVID is Very Important. One reason is it helps our outlook to have the help we need in place so we don't get frustrated with our lives or even hurt ourselves more. If you are having difficulties in this area of your life, it does depend on insurance, what state you live in and your needs. I have been through 2 states dealing with Personal Care Attendants and Nurses in the home. If you have any questions, I would be more than happy to direct you to the basic steps of getting some help in your home.  This leads me to my next subject of the day:
     Your Infusion pharmacy and having an advocate.   All of us on IG treatments should have an advocate assigned to us to help with questions and the many small and large things that come up during infusions. IVIG patients usually go to a transfusion/Infusion center, there are nurses available there to help with any questions you may have. I have been on SUB-Q-IG treatments since the beginning and perform my IG infusion here in the home myself. That's when the questions come up.  Doing your own treatments can be a bitch eh. I know, I have had so much come up, from recalls of the IG plasma to traveling on a plane. I get my IG through a national pharmacy called Bio-Rx. They have an excellent advocacy program. They have assigned me an advocate that not only helps me track my supplies and calls every month for my re-order, but also helps me with so many other questions and situations. Have you had to travel on a plane?  One of the situations that had me in a dither was when I was going out of town and was flying for the first time as an IG patient...those TSA rules are a bitch for anyone carrying IG onto a plane. Not only is it a liquid, but it is in vials, and the many supplies you have to carry also go against TSA standard guidelines.And they are strict!  However, for us and others like us, there are ways to work with the TSA to get our supplies on the plane with us as they cannot go with the luggage due to the environment in the luggage compartment. Keep in mind while you work with the TSA during your check-in, that they are doing this for Your protection. I found the TSA and the company I was flying with to be very considerate. They really aren't trying to make your life difficult.  My advocate told me step by step what I needed to do and how to do it, And provided a legal transport carry case for all of my meds and supplies. You will always need some lead time on this for the first time you fly to get the doctors letter in place and the carry case you will need to get the medications through the check points of their security. Once you have it in place and the carry case together, you can then fly and travel with it whenever you need. I use it even on car trips as it is in one very safe place and in case of some problem, everything is explained by the doctors letter.  So, your advocate is very important. A good relationship with them is paramount. They are there to help and all of them either have a PID themselves or are a caretaker of a person with a PID.
     Well, that's enough for today. Any questions, I am here to help. Take care of yourselves and enjoy every day as well as you can. I wish for all of us to have an Uncommon Life.