BBW… I already paid!

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Today, I decided to go with my hubs to look at a truck. You know, you can only hibernate for so long and then you want to go out. Granted, it is exceptionally cold, but I bundled up and hoped for the best. The car deal did not happen, but by then the damage had been done.

As the title implies, the BBW (or big bad wolf) has decided that the flare I am in is not enough and is making sure I pay for going out into the cold. How? My knees and feet are so painful and my fingers are not much better. I feel a cold in my bones that I have not been able to chade away yet, and I have been in for hours! Yes, he is making me pay and he has taken all my credit cards, checks and valuables with him!

This so totally sucks. I knew going out in the cold could make things worse, but I also hoped for the best. I am an optimist at heart, you know the type, always tries to see the bright side of things, and I cannot find it here. The bright side is filled with pain and chills. How did that happen?

Oh well, that is my rant for today… hope everyone else is warm, and pain free!

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Old Post called Depths of Despair

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Depths of Despair

Recently, I am having some real issues with my health. Lupus has been flaring, despite the best efforts to keep it under control. For the first time since I have had this disease, I felt out of control and ready to give in. Give in to what, you may ask. I was ready to give up the fight and give in and have peace. Depressed, yes, who wouldn’t be when yoru body is wracked with pain, your joints hurt, your fingers are swollen, and you can hardly walk. This time, though, it was different.

My lupus has started into the neurological realm now and I see daily things changing that I cannot control. Things like, my memory for instance. Sure, I joke about this but it terrifies me to think I cannot remember things at time. The fog I am used to having is mild compared with this. It is frightening to think that, like alzheimers, I may sink into the world of no memories. It would scare anyone.

I am having more migraines, more pain, and feeling lost in the shuffle lately. Combine this with an eye doc telling me I am developing cataracts, and my straws are overloaded and my back is breaking. I know this is a little thing but it virtually sent me over the edge. I mean, come one, what else is going to happen? There I said it.

The unknown is scary. I can deal with many of the manifestations this disease provides me with, however, losing my memory is quite another thing. The edge came closer and I was ready to go on over. I am prepared to die, as it were, but I prefer to live right now. I have a lot of unfinshed business to take care of. Grandchildren to spoil and love, family to love, and friends and spiritual brothers and sisters to love as well. I have been saying that a lot lately to those around me. I love you. Simple words but powerful in their meaning. I want everyone who has touched my life to know how much it means ot me that they are my friends and family and that I love them all.

Not to get maudlin here, but the edge was there, all I had to do was give up. I can still see it. However, I have firmed my resolve now and feel much better about it. I am going to live my life and watch those grands grow up into young adulthood and be there for their important events. I have seen the other side, almost wanted to go there, but now I am determined that I am here, I am living, and I refuse to succumb to the edge. The precipice is still out there, waiting… for how long who knows? In the end, I can only think about today and what I have to live for. That will sustain me. Sharing my love of God with others, helping friends when able, and loving each person who is in my life. These are the things that are important to me.

I am glad I saw the edge. It knocked me out of the blue funk and back into the land of the living. Praise Jah for all the friends I have and for the will that was given me when I was at that low point. Thanks for the encouragement you gave me and this life that I am trying to improve to show You that it is not in vain. You alone are the Most High and You have given me the strength to continue. Thank you Father.

Who’s afraid of the big bad wolf?

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Some days I am! Today would be a perfect example… I am watching four of the grands, at different times of the day, and I am reduced to napping in between several times because of the wolf. Am I surprised? No. You see, last night, as I posted previously, I had begun to have pain, acute and chronic. It was a harbringer of the day today. Try as I might, the more I wanted to keep going, the more my body fought me to lay down. In the end I gave in and rested whenever I could. Tonight, I am going to post this blog, watch a couple of shows I have dvr’d and then off to bed.

My lupus friends out there will understand the above paragraph quite well, because most of us have had days like the one today.  It is my hope that a good nights sleep, coupled with the rest today, may find me feeling much improved tomorrow. Here’s to hoping!

In the meantime I will stop fighting my body and listen to it and succumb to the fatigue this once. Who knows? Tomorrow I may find the big bad wolf has passed me by! Somehow, even with hope, I doubt it. UGH!

The Lupus Community

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Many of us have friends, some life long and others shorter term. One of the things that bind us as friends, is a commonality of something. Call it a community of sorts. I have several of these communites in my life. The one I am going to talk about today is the Lupus Community.

I have lupus. This can be a devastating thing that can overwhelm you when you are first diagnosed, and leave you shell shocked for some time. After the intial shock wears off, the knowledge phase kicks in, namely, where you research and learn more about this disease and its effects on your life and family.

It is during this phase that many of us have found a surprising community of folks who have been there, done that and now help others just like themselves. I call this the Lupus Community.

Now, to be certain, you would think that to be great friends would require seeing each other daily, talking on the phone, and sharing life’s events. Yes, that is true. In this community though, we do all of the above with tthe exception of seeing each other in person. We “see” each other online.

In this community, we can share things that we would not tell others. We can be honest, and discuss the way this disease has affected our life, warts and all. We can be brutal in our descriptions of certain manifestations of the disease and feel free to express our innermost feelings without fear of judgment or belittling that many “normals” sometimes do inadvertantly. If we are depressed, we can tell others and know that they will lift us up and help us to get through it. It is a community of others who are dealing with many of the same issues that are difficult to describe to those who are not ill. We laugh at our jokes and inadequacies, we cry when we lose a friend, we rejoice in remission, and we commiserate in our pain. We share links with information and discuss various clinical trials and developments as well as improvements in care and even good doctors versus bad doctors.

In the end, it is a community of caring, intelligent individuals who share a commonality of an incurable disease and who are living with it each and every day. When those closest to us get tired of hearing our complaints, this is the community that will help us and bolster us as we survive each day and keep the wolf at bay. It is a sounding board for us to vent and scream, to cry and laugh, to share and care. We cross all socioeconomic boundaries, all races and religions, and all countries across the world. We speak different languages and have different colors of skin. Underneath it all, though, we share the wolf. We fight it as one, and never give up on each other. We are men and women who share this unique bond. We are young and old, we are survivors one and all.

I am blessed to have found this community and to share it whenever I can. Yes, I may have in incurable disease called lupus, but, and here is the difference, lupus does not have me! I am a lupus survivor! I share this distinction with many millions earthwide! We will fight until our last breath each of us! If you are newly diagnosed, please join in the lupus family and you will feel the love and caring that I have experienced…

See, I am indeed blessed…