These past 6 years havent always been my finest moments, sometimes I am to argumentative and I realize and feel bad about this but yet other times feel no dismay at my actions because I also dont want to be a stone that others step on. I think ive grown and matured but I also know I certainly can still become even better both as a patient, a friend and as a sister, daughter, etc. I know my stubborness is an asset but I also know it can be a downfall and ive tried very much to reign in my opionated self but I know im far from perfect. I dont always care what people think of me and yet I care to much what certain people think. I want to be liked but yet I dont need permission to be someone other than who I am. I think I am fiercely loyal if you are kind, helpful or just listen and are there for me. I love what I get to do for others but have no illusions that I do things perfectly because I dont always. I want to be liked but I dont need to be liked.
I feel like over the past 4-5 months ive sort of put alot of things on the back burner including many friends and other than immediate things ive not been the best leader I can be for APF (my thoughts -ive never gotten anything but encouragement from managers/fellow leaders.) but I am always here for patients/others needing advice on pain and I will always work tirelessly (tiredly?) behind the scenes when not out in the open working on projects. I feel like other than my closest (distance wise) niece and nephews ive not been a great aunt but I also know the others are always in my thougts and as their aunt i'll always worry endlessly about how they are doing. Other than this new project for MPS I/Genzyme which hasnt been all that time consuming (a few hours a week generally) ive not done much around MPS and feel so incredibly out of that loop but yet I dont think there is alot ive missed I suppose it's just a weird feeling since that is where I really started with advocacy.) Often these past 4-5 months ive looked back at the things ive done and it feels more like a cloudy memory than an actual memory I think because of so much going on H/A and this tiredness wise. I dont quite feel like there is a 'normal' routine to my life yet even 4-5 months later since that first surgery but I think that isnt really true (it just feels like it is because it's just different and a different normal right now than pre-May). This isnt to say that im not happy I had these shunt surgeries (and in general!!) - sure I wish the first one would have worked for longer than it did and the same wish with the subsequent revisions but there's no sense mulling over what I cant change about my body (finicky in-ability to regulate CSF with these shunts properly I guess). Im glad that I have the neurosurgeon I do whose willing to help and willing to stick with my care in the long run. I hope we get this figured out soon and I hope in the new year to figure out other aspects of my care that puzzle me or make me scratch me head in wonder. In all I guess this post is really just my mumblings and thoughts on what the past few months have taught me and what I think im trying to learn as time continues to march on with and despite MPS.
My conclusion at the end of this essay is that I think I was the carrot and am now the egg but hope to become the coffee bean and change those around me but never stop realizing that i'll never be able to change every situation and so instead a balance - a egg because it represents flexibility and adaptability and the coffee bean becomes it represents the ability to change the situations around you for the better. ...
A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up: