stuff
New to this site. I love it. Have been on several sites and as soon as I figure out how they work they change or I never figure them out! I am a really low tech old lady. For IT support I do call my grandkids. I have been diagnosed with cvid for a little over a year. It is finally a relief to know that I was not crazy, a nut, or just enjoyed being sick. I lost my job (voluntary retirement) however I do not remember anything voluntary about it. Now have a port which has been great for me. I am still learning how to pace myself. I was a single mom for 20 years and always did everything and enjoyed it. Now It generally honks me off that I have to take breaks, some days are totally worthless.
I have learned a lot from this site. Just been reading for weeks and gleaning. I do not see an immunologist. I see a heme/onc dr. I am feeling ok but wish I knew more of how to take care of my self. The nurses at my infusion center do not seem to know much about cvid so I just hit places like this:). The Gammaguard folks sent me a very informative book.
My last labs showed some dehydration, nurse said I should drink water rather than anything else so I am doing that. My M spike is increasing, for now I am just ignoring it. I went from .04 to .06
I do have some other fun stuff I am learning to cope with but ....Three out of four of my issues involve fatigue. A goal maybe. Think I will plan on getting dressed at least 3 days a week. Being retired I can do that . Any feedback on things I can do to make myself operate at my maximum would be appreciated.
I have learned a lot from this site. Just been reading for weeks and gleaning. I do not see an immunologist. I see a heme/onc dr. I am feeling ok but wish I knew more of how to take care of my self. The nurses at my infusion center do not seem to know much about cvid so I just hit places like this:). The Gammaguard folks sent me a very informative book.
My last labs showed some dehydration, nurse said I should drink water rather than anything else so I am doing that. My M spike is increasing, for now I am just ignoring it. I went from .04 to .06
I do have some other fun stuff I am learning to cope with but ....Three out of four of my issues involve fatigue. A goal maybe. Think I will plan on getting dressed at least 3 days a week. Being retired I can do that . Any feedback on things I can do to make myself operate at my maximum would be appreciated.
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