|May 10 2011|
It has taken me awhile to write this because it is so close to my heart and painful. After 6 years and 11 months I feel more alone than ever with this diagnosis, and it has become more than justa name of a condition. It has become a monster, a black cloud that dictates my life, worse than any dictator in the world that has ever existed. I have no freedoms, my teenage years and early 20s have been robbed from me and replaced with a life similar to my 85 year old grandfather. The difference between me and my elderly, ill grandfather is that after years of being unhealthy he has a family support that is unbreakable.
As time passes and more health issues arise for me, I feel my family pulling farther and farther away. Moving in with them was the worst decision I have ever made. My support from them is gone. They are more in denial now than ever. After they have witnessed the big flares that incapacitate me, they grew more distant. They don't want to think that their daughter, sister, grandaughter, niece, etc has a condition that has altered her life to such a degree. They realize that this condition could land me in a wheel chair. They are frightened and have ran the other way leaving me to fend for myself. I never thought that I would be in this position. My family has in a way given up on me. As I am faced to make one of the biggest decisions thus far in my life regarding health, I am forced to do so alone and with the help of the few friends that have stood by me. I understand that to be the family of an ill person is not fun but to criticize my treatment plans created by my doctors and no longer be supportive is hard for me to grip. They are burned out from dealing with this, but I don't even voice everything that I experience. They demand me get up and do this or that and I am just unable to follow these orders physically. I feel like their new philosophy is "tough love." They believe that if they yell and ignore any indications of illness/pain that i will be fine. They get upset with me for taking my prescribed medications that do help me. I would not be taking them if they were of no assistance. I have dealt with this condition for7 years and it has taken about that long to located and isolate the medications/treatments that work for me. I am sorry but this condition is not going to just go away. I know they have all waited patiently for another remission to occur but that was a rare event for any rsd/crohn's patient. Tough love doesn't always work, and I never thought I would be treated this way by my own family who I have known from birth.
Denial- my family's new take on life, not a fun river to traverse upon.
A set back with insight
reality is setting in
another bump in the road
spread and life
update- ketamine treatment in December-some hard n...
A very Merry Christmas! =)
2 months out from an inpatient ketamine infusion. ...
7 weeks out from an inpatient ketamine infusion. ...
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