Friday, May 3, 2013

Lupus Awarenes Month May 2013

I really need to make another effort to push my 1st book again. It is dedicated to those with Lupus, their caretakers and family, and all of those that support us with this horrid illness. I am coming to the realization that the "Wolf" secrecy in the way it effects our lives, our physical bodies in so many ways causes havoc for us and our doctors. I was at my physicians office early this week, and had a very long, and very worthwhile visit with him. In fact both my husband and I went for several reasons. One of those was due to the fact I have had this "abnormal" blood test now going on for several months, seemingly related to the double vision, and the marked weakness and pain the my lower legs, and from my elbows to my fingers. The weakness in both arms and hands I began to notice just a few weeks ago. But the pain in my lower legs has been there now for months. Some days so horribly bad even on all of the medication I am on, that I could just sit in the floor, cry, and rock. Yet, I know I can't do that. I have to just move on, through the pain, even though it is as bad as it is at times. Back to the visit. As we talked about the blood work, possible medications that might causes this issue, and why it needed to not be there are all but basically "normal" would be none in the blood stream. Mine is way above none. The subject of course since part of this visit is about my Lupus, and other AI illnesses, is just how complicated Lupus is, and just how very little, or how much it can effect someone physically. As he said some have a small rash on their skin or face, and that is all. Others could have any and all of heart problems, kidney, lung, liver, stomach, muscles, joints, skin, eyes, in other words almost everything on the body for some can or are effected. Thus that makes for a very difficult patient, when numerous systems in the body are effected, and trying to treat all of those, then can run into medications have unwanted effects, or them not being something that should be taken together and so forth. For myself, it also means, like many, any of the smallest of infections (as I has on Monday) can go from very minor to putting me in ICU overnight. My body is not able to fight off things like someone with a normal immune system. So, as I found out, I have a kidney infection. That is why I ran high fever Monday. For anyone else it was fine to wait until Wednesday to see the doctor. For me, I really should have called and been saw immediately due to the high fever. Fortunately, I knew that, but I also knew what to do to try and get the fever down, so I did that. When it stayed down on Tuesday, I felt fairly confident I could wait until Wednesday to find out what was going on. But, I also knew if the fever had continued or gone up, even in the night, I had no choice but to go immediately to ER. So, someone with these types of autoimmune illnesses are always on "watch" on guard for something that others would not be as concerned about. A cough for a normal immune system, may be able to wait a couple of days, but a cough depending on other symptoms, especially any that indicate infection for a compromised immune system means DO NOT pass GO, and GO straight to your doctor or the ER. Back to my post now, thus I really need to push this book, and I am trying to decide if I have enough for my 2nd one to be published now. I have less poetry, but I have many prose that will be 2 or 3 pages long for each one. So, even though I have less in number of pieces the book still will be over 100 pages in length. Plus many of the "prose" pieces that are not in this 2nd book yet, are ones I am going to use for my 3rd book, which will be a sort of autobiography about a look into my life and Lupus, illness, chronic pain, and how I have sustained being here without being insane yet. So, I am in a place of a deciding dilemma at the moment. I plan to get through what I have ready for this next book again over the weekend, and make a decision. If I feel I have enough material in it, then I will begin to ready it for publication. That will mean I make my DEADLINE on "Tattered Musings"!!!! Keep my in your thoughts and prayers as I decide what to do, and how to handle this 2nd book. I have a couple of things I learned from the 1st one that will make this next one better I hope. I also have a "logo" that Jim designed for me, that I will be using. I am excited about that. Thanks so much for all of the love and support... and have a wonderful weekend!


I have made my decision that I DO HAVE enough material for my 2nd book! "Tattered Musings" :) I think I am going to make my deadline of the end of May. Still have lots to do to proofread one or two more times, and get it ready for publication! But, I am thrilled I have made it. Thanks again for everyone that has stood beside me, hand in hand... for you help to make it possible also...

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