Tuesday, January 21, 2014

Searching & Praying

March 7, 2013

Beware, my update is not so pretty, but I’ve had a lot of people ask. First I want to say how appreciative we are for all the love and support from so many people, even people we didn’t even know have helped out. We were sooo very blessed to be able to pay down such a huge, huge bill. Thank you sooo much!

Because of medical reasons we are not going to the naturopathic clinic right now. The clinic got me somewhat walking and driving again, which was awesome, but since November I have plummeted and have taken a turn for the worse. We are actively trying to figure out what to do and what treatments are the best way possible. Going either the western or the alternative medicine routes have both seemed to backfire on us. We have tried soooo many things. To summarize a lot of what has taken place; I am crippled again. All the improvement that I made is lost. In November it started out as a pulmonary embolism/ongoing pneumonia, that just didn’t want to go away. At the same time we found a blood clot that has prevented me from getting some of the IV treatment that helped me before. And now, this one is really hard for me to say. I guess because its so current. The inflammation is spreading so fast its in my head and eyes. I have scleritis. I have learned I am on my way to going blind. If I don’t do something fast I will go blind permanently. I started steroid drops in January that have helped, but I was told I can’t be on that for too long or I can go blind from those as well. So as of right now I am going into the hospital to get a RA infusion tomorrow. It is a quick fix drug that turns off some of my immune system. Unfortunately,  I can get serious side effects from it like I did with my last RA drugs. But the quick fix is what I need right now to hopefully prevent me from going blind or having permanent damage. I pray I don’t get serious side effects from it. Right now my eyes are just blurry, extremely painful and lots of pressure in my head. You know the first thing I thought of when I thought I would go blind? Is my family of course. Then I thought; Oh no, what if I can’t see to do my hair and make up. Silly me I know, but I miss doing those things. LOL

I know how serious everything is. Realizing it, has made me real, real sad. The problems with my eyes have forced me to do a lot of soul searching, breaking down of why I have to endure one more thing. It also makes me wonder what my purpose is here, how can I overcome this new challenge. How do I not let anger get the best of me. I am still trying to figure it all out. . I think it will be okay. On a positive note the RA drug could also get me moving again to where I can try to combat it with other therapies. We haven’t told our children that part yet about my eyes. We don’t plan to unless it doesn’t go away. There have been many times I have felt like, oh my gosh I could have died, but I think I am here for a reason. A reason I don’t know. But I do know I won’t stop fighting to prolong my life. I want to be here.

On a happy note, we decided we are not moving or going somewhere warm for awhile. It just didn’t work out with so many variables. Right now we’re trying to think of ways of how I can survive next winter. We love it here and we don’t want to leave our family and friends. With our tax refund money and refinancing our house we have thought of building a sun room. I know the sun is vital and helps my disease a lot. It is the one thing that I know that truly has helped. We are hoping it will help me get through next winter. I have read many comments that people chronically sick and building a sunroom is the best thing they ever did. We know money is precious right now and its hard to know what’s best. I also realize what I do for treatment this next year might be way expensive. It always is, no matter what route I take, but I think this our next step. If it doesn’t work out for next winter then I guess we move.

If anyone has thoughts or ideas about a sunroom or has done one let us know. Please be positive, I know most of you would, its just I can’t handle negative things right now. LOL If you want to tell me, “That is a way dumb idea”, please message Kent instead. LOL




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