Thanks & Thoughts

May 13, 2013

I just received the best surprise ever! I came home from a Dr. appointment with my whole yard weeded and flowers planted everywhere. Oh it is sooo beautiful!

    

                                                                           

Before I got so sick I would spend hours outside gardening and planting flowers. I have  realized being outside is truly my place of serenity. For me, I know without a shadow of doubt  there is truly some sort of healing there. I’m an outdoors girl all around! I may not have known what I was doing in the past when I was gardening, but I loved it. A flower just makes dark moments a little brighter. It helps me forget all my current woes. The generosity and love given by others helps remind me to keep fighting when I have felt defeated over……..and……..over.

Thank you, thank you to the wonderful people who were involved. I know that was expensive. Please know it has meant the world to me.

I’ve been debating of giving a little glimpse of what my life has transpired recently. I have had nothing, but bad news. Especially lately. I would rather you all hear it from me than from other sources or my kids not understanding it all and trying to explain it.

To be honest, recently has been some of the darkest moments of my life. Going blind for a time in February when the inflammation was at its worst and not being able to see or move was the most torturous time I have ever endured. It felt like the worst kind of prison mentally, physically I have ever been through. A prison of all I could do was just lay there and be stuck in one spot. I couldn’t watch TV. I couldn’t read. I just had to sit there in this pain and anguish for days. I was very, very angry. Angry at God for taking everything from me. I felt abandoned by God that my prayers and efforts were in vain. I felt, haven’t I truly endured enough already. Hasn’t my family been through enough without a mother and wife for two whole years? Why did things go downhill so fast when I was seeing improvement?

During that time I couldn’t let anyone in my home for I did not want anyone to see my anger, to see how bad things truly were and see my pain. I knew I needed to get through these emotions in my own due time. I didn’t want anyone to see how deep into that hole I had truly fallen. I knew if I talked about everything my anger would come about in my words. Over the last few months time I have realized my anger and bitterness will get me no where in life.

No matter what religion you believe in……I believe there is a God at my side. Helping me carry all these burdens. I may not understand why I’m going through all this, but I do know to keep on renewing that hope, faith, to treasure every moment with my family and to get the most out of life. I can try to be a good mom from bed being crippled with limited movement. I may not be able to go to my kids concerts or sports activities (that they want to do, but haven’t started back up again), but I figure if I try to be the best mom I know how that’s what matters.  I can only do what I can at my own pace and I have learned to just be grateful for what I do have in life.

Every specialist I’ve seen, even the best in the country don’t even know what to do with me. As I have mentioned before, whether its alternative medicine or Western medicine it has all been the same.  I like being a little unique, but this complicated, rare and uniqueness medically that I hear from every doctor I see I didn’t have in mind. LOL I worry about being the label of a hypochondriac or being a “sicky” my whole life. I am trying my hardest to get rid of those labels if said by anyone or put upon myself by my own thoughts in my head. LOL It is kicking me in the arse, that’s for sure. Ha,ha

The good news is right now, my joints have improved a bit. I’m trying to move and get out more. It amazes me how much energy it takes just to sit up, talk and move. It’s improving though. The bad news is the disease is also in all in my organs. From what I was told I just saw the best eye specialist in the country. My vision is changing constantly that usually happens over years time is happening fast within the last weeks, and few months. They said, “I’ve never seen this before”. I don’t know what the official outcome of the permanent damage will be to my eyes. Once the disease stops attacking them we will know what were faced with. My eyes might be freakish to look at when all said and done.  The inflammation ate through the whites of my eyes and shows parts of the blue layer underneath. Especially, in my left eye. I’m just sooo thankful my up close vision is still working, so I can read. The pneumonia is still there at the base of my lungs. That’s probably why I’m so extremely tired all the time. They told me to go to a different pulmonologist and to see a cardiologist. They want me to go on more drugs and steroids. I absolutely hate steroids knowing what they do to me. Sigh…… And last week tests came back positive for skin cancer on top of my head. Sigh……..I go in for a small surgery on Wednesday.

I’m sorry I don’t know who was all involved with my flower beds, but please send my thank you a long to them. Thanks again! 

Em