For those of you who may not know, I was diagnosed with Reflex Sympathetic Dystrophy of the left leg and ankle in 2006 following a worker's comp injury. RSD is a chronic pain condition where the nerves become damaged after a seemingly simple injury (a twisted ankle in my case), and the signaling gets stuck in the 'on' position. Once that happens, the Central Nervous System is then considered damage and there is currently no FDA-approved 'cure'. You may have heard of the people who go to Germany and get put into a coma for a week to reset the brain; that procedure is not approved here yet, though there are similar ones with the same drugs that are allowed. I will have this for the rest of my life, and I am only 23- that is a big hard knock pill for me to swallow. I have been through PT, 18 spinal nerve blocks (and counting!), a spinal cord stim trial, and so many meds I can't name them all. For more info about my disease and the treatment that the doctors are recommending (Spinal Cord Stimulator), visit the two sites below:
http://en.wikipedia.org/wi
http://en.wikipedia.org/wi
Brian has never known me without this disease, and he has dedicated all he has and all he is to caring for me. I am not allowed to drive, cannot work or go to school; I am an invalid. There are days I cannot get out of bed. Brian knows all of this, and yet he never complains- he washes my hair when I can't stand in the shower and have to use the shower stool, he makes me meals, he wakes up and gets me drinks at 3 am when I have cotton mouth, he drives me everywhere, I even moved in with him because he is better able to care for me than my mom is with her work schedule (we had planned to wait until after the wedding)...I could go on and on, but I think you get the point. Ask anyone who have met him, and they will tell you what a God-given gift I have in Brian.
I just wanted to give an update that we are going to court for my worker's comp case next Tuesday, Feb 3. This is not for the entire case, but to determine whether a Spinal Cord Stimulator is "medically necessary". This has been over a year in the making (I had the trial part end of October 2008, and was supposed to have the permanent surgery beginning of Dec 2008, and they denied it the day before the surgery. Ever since then, it's been a fight), and even though we have the medical data and doctor backing we need, it's not guaranteed. If they deny this on Feb 3, it's a final decision and I cannot dispute it- so the court date and possible outcomes are weighing heavily on me.
Right now, this is the only procedure that will offer me relief that I can hope for (ketamine infusions, the drug they use in the Germany comas, are an option, but the doctor who does them, Dr. Schwartzman out of Drexel, is the world's leading expert in my disease and has a waiting list of over 2 years. My current appointment date with him is end of January 2012!). It's not ideal, but nothing regarding what I have is, so this is what I am hoping for to help me live pain-free.
I do have to say, this has been a learning experience for me. I struggled for many months after being denied the surgery- it was my dream that I could walk down the aisle without support of a person/cane/crutches/wheel
It’s also been a growing process for me in other ways, not just in wedding planning. Brian and I made the decision to attend pre-marital counseling (outside of what our church requires with a Christian counselor who specializes in this) because we realize the strain that this could have on us and our relationship, and we want to be as prepared as a couple can be for whatever life throws at them. I HIGHLY recommend all engaged couples attend separate pre-marital counseling from what their church may require (no matter the denomination); consider it ‘fireproofing’ your marriage.
But in other ways, too, I have changed. I try my hardest to let go of things and give them to God (my faith has been amazingly strengthened during all of this), and that has become much easier as time has gone on. I try to find the good in things; Ma Ingalls from Little House on the Prairie once said, “There is no great loss without some small gain”, and I try to find that small gain in everything I do. It has helped tremendously to see and appreciate the little things (like going for random ice cream with friends and laughing for over an hour!). I have learned to accept where I have gone wrong and try to right that wrong as best I can- I realized that if I can apologize and try to make that first step where someone else may not, my relationships with everyone in my life have improved dramatically. I try (still learning on this one) to not stress about it all; God will make it work. Most of all, I have learned the power of prayer and the wonder of my faith. While the response to those prayers may not be what I want to hear, God is always with me and has many bigger and better things in mind for me. I get very happy (not proud, but genuinely happy) when I see the growth I have made in my life and in my relationships and in my faith. I realize I still have a very far way to go, and that it's a never-ending journey of growth, but this time has been such an eye-opener for me. I have found out that family, no matter if they mess up, love you and will try their best to always be there for you. I have learned the bonds of sisterhood (both real and relationship-wise!) cannot be broken, no matter how much you or someone else you know tries. I have learned who my true friends are, and feel so welcomed and loved by the heartfelt emotions that comes of a great friendship. I have learned that reconnecting with great friends lost along the way is a marvelous thing in and of itself, but rebuilding that relationship that once meant so much is a glorious and awe-inspiring thing, indeed. I have learned the wonders of prayer and a church family, and cannot thank God and those from that family enough for their gentle loving and guidance. Even with being sick, I feel so extraordinarily blessed- thank you so very, very much to those who have played an important role in my life.
Therefore, anyway, if y'all could offer up some prayers, thoughts, and vibes for me, it would be very greatly appreciated. I know I haven't always been the easiest person to get along with, and I realize that; if we have had our differences, please, take this as a sincere apology. I have learned the bitterness and poison of hatred and the sting of bitterness, and I have learned that life is so much better with an apology, a smile, and wiping the slate clean. You all are wonderful. If anyone has any questions, please, feel free to email me and ask away- msbriarrose@gmail.com.
If I forgot to tag you, I am sorry. It does not mean, in anyway, that you are not important. I went through the list and tried to get everyone as best I could. There are so many of you who are very important, and I love you just as much!
Annnnnd enough of the sappiness. Back to business as usual!
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