Me: "I'm getting worse..."
Mom: "No, don't say that! You are getting better! This guy is helping you!"
Me: "I know this is promising, Mom, but just for the record, I'm getting a lot worse."
Mom: (sad look) "Don't you think I can see that... You don't get to go do anything anymore. I know."
Me: "But, everyone kept telling me that it doesn't always spread... that's a small chance. Why do I have to be the one that has it spread all over???"
This was a small conversation I had with my beloved mom this morning, and of course, I cried, as I always do when talk about this disease becomes serious. This is the reality of it all, of life. It's not pretty. I have to take opiates now just to sit around my house without feeling like my limbs have been set on fire. In the summer, I used to be able to tough it out and go a whole day (whooo hooo) without an opiate and just taking the other meds I have. Now, I've swallowed my pride (and more opiates) because going without would be torture and detrimental to my physical, emotional, and spiritual self.
What is the message behind these ramblings? FEAR. I AM SCARED. Pushing that fear aside and not recognizing it isn't the way to go, but letting it consume me shouldn't be an option either. After reading the bio of a friend on one of my raw food loving websites (http://my.crazysexylife.com/profile/CarolynNewman), I realized that this whole time, fear has been motivating me to live better, do better, be better. Without the fear of this disease spreading, would I have taken so much control over what I eat, drink, think, say, and do? Probably not. So, is fear a bad thing? Not necessarily, but we have the responsibility to turn our fear into action instead of being paralyzed by it.
FYI, Carolyn has a wonderful website, http://www.warriorwear4u.com, where she sells sexy and sassy compression socks for us goddesses who just happen to have a chronic illness.
7 comments:
Dearest Maria, I felt I knew what this post was going to be about when I saw the title-I was hoping I was wrong.
Sending you loving thoughts, even though you are oceans away, I am crying with you, I only wish I could do something more useful.
I know of a lady who is being treated, I was going to wait till whether she had a favourable response to it but I will tell you now...her new dr's are testing for metals but also for a whole load of other things, viruses and I forget the rest. It sounded very intense. But they seem to be doing this specifically for rsd and its way more than anything that I have heard about before. She also said it was covered by her insurance too (she and they as far as I know are in Texas though).
They have a limited website www.neurosensorycenters.com but she said she had better information that the dr's had sent her before she went so I will get hold of her and send them to you. I don't know but maybe it could help you too?
Hugs and kisses to you, I am so glad your parents are so there for you.
I regulary read your blog, just wanted to send you cyber ((HUGS)).
I have a relative who lives with chronic pain, she like you is an amazing young lady xx
I love your attitude mate, we all have the power to focus our pain into something productive...even if that's just staying sane for one more day! RSD certainly does spread, I wish the doctors would stop perpetuating the myth that it doesn't. People with RSD that stays contained seem to be the minority! I know how scary it is...so scary I have to shut off looking forward sometimes and just keep my mind in the present xx
Hi Maria,
I don't have any magic words for you but I wanted to let you know that I am thinking about you and I think that you are incredibly brave and strong.
You know your body better than anyone else and you have a better pulse on whether certain treatments are helping. Opiates never did much to help my pain so I am glad that they can help you at least a little bit. I had good luck with Lyrica taking away the worst of the pain but there were some negative side effects that were just totally worth it to make that pain go away.
Your ability to share your experiences is inspiring to me and helps me realize that I am not the only one with these feelings.
I <3 u Maria.
Oh, sweetie - I take a break from blogs for a couple of days and I miss this... I'm so sad. :(
What can I say that's not been said already? I share your fear. I am scared, too.
I wonder if doctors say it doesn't spread in some foolish notion that perhaps if we don't think it can spread it won't?! Mind over matter or what?
Then again, I had one specialist who, when I returned to see him because I had symptoms in a new location, tell me he'd hoped mine would 'burn itself out'.
Um, according to the VERY helpful book Living with RSDS by Linda Lang and Peter Moskovitz, MD (both of the RSDSA - she a RSDer, he an MD on the board) it does NOT 'burn itself out' and many of these ideas doctors espouse are well out of date, as it much of the information we seem to be given by doctors who 'know'.
YOU know your body, YOU are in charge. YOU have taken incredible steps to make your body as healthy as possible to lighten its load.
What's more, you come here and to other blogs to encourage others, and when you are scared you are strong enough to ADMIT IT.
Fear loses some of its potency when we share it, don't you think?
You have been able to do SO much while also going to great lengths for your health; how you manage to do this is beyond me. AND I DO want you to know that you will STILL be the same amazing Maria if you need to slow things down.
And honestly, I can only imagine how much that must hurt you, since I know you enough to see your drive, your incredible spirit and determination.
Sending you all my support and love each day. Know at least I'm out here and I care very much for you!
Keep taking each day as it comes, as Caf said. We're all in this together in that way!
Much love xoxo
Lisa
Hi Maria,
I, like others who have posted here, completely empathize with what you are going through. It's difficult, at best, to realize that your RSD is spreading. I remember when I first told my doctor my RSD was getting worse, she looked at me and said, "I thought you were in 24/7 horrific pain already!" Talk about someone coming close to getting slapped!!
But, the positive that came out of it was connecting with the 'group' of doctor's I have now. For if I would have remained her patient, I would never have been searching for another doctor. There is a reason for RSD spreading or getting worse, what is that reason? It's different for everybody, but one day you will look back on these days and know!!
I too have had excellent relief with Lyrica, but it's not for everybody so if you haven't tried it already, ask your doctor for some samples for you to see how it will work with you.
Maria, most everyone who has chronic pain, be it RSD; Cancer; Fibromyalgia; MS; or whatever, we all have emotional issues along with them. You are entitled to host your own 'pity-parties' now and then!! So let it out and cry, it is healing!!
If you need anything, and I do mean anything, please don't hesitate to let me know!! I am here for you!!
~God Bless~
Much Love & Respect,
Coach Marla
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