As I look back at my life and think of what my plans were at age 19 the plan I am about to make never crossed my mind. After months of debating it has been decided that I will be moving back home with my parents by the end of this month. At 19 it did not occur to me that I would be so sick to the degree of the incapability of working, providing for myself, and having to move back home at age 29. It is not an ideal situation. Nothing about my life the past 10 months has been ideal. Slowly I have been stripped of my independence. Ideally, I would not be sick, or if I still had to be I would at least be well enough to work and finish school and stay at my apartment on the third floor.
Every day I tell myself "it could be worse" or that "one day I'll be well again". I believe in those words. It is what provides me hope. However, hope does not change reality. The reality is, I can no longer provide for myself. I have extreme dizziness. If I walk too fast I feel I will pass out. It also aggravates the rib with fast motions. I cry every time I have to leave my place because of all the stairs that await me. It takes so much preparation to get myself out the door to do one activity. Just one. After that, I am back in bed, hurting, and tired. I cannot drive myself anywhere. I need rides everywhere I go. My mother has to come do my grocery shopping because I am not strong enough to even carry the bags up my stairs. It takes all my focus to get up those stupid things and even then, sometimes I need help.
My rib hurts so much that it has made me a cripple. Luckily, after speaking with the doctor this last time around, we agreed to stop my current treatment plan. It was taking so much out of me. Sadly, there is no new treatment plan. None of it is FDA approved for SAPHO SYNDROME. No one knows how to treat it. So I am back to square one. There is an idea of possible removal of the rib bone, but that will take some serious convincing. The percentage of it working is very slim and the percentage of it attacking somewhere is great. But that is the plan for now. To convince the Thoracic Surgeon. Those are just some of the issues I deal with in relation to this disease.
Regardless of those things, the point is that I need more help. So after much prayer and thought it was decided that moving back home was my best option. It would allow a bigger space of comfort, more accessible help from my parents, and a place for me to recover with no stupid stairs to keep me indoors as much. It was a really hard decision to come by. All my independence is stripped from me. Rides to church and other social activities will be harder to come by. I will be that much more isolated from my friends. However, there comes a point where illness humbles you. It allows you to make choices on your needs and not your wants. It allows for hope. It provides learning. It also provides a chance to follow what you believe is the right thing to do even though it is hard.
I have come to a point with this illness that I cannot do it alone. I cannot pretend with a life that does not exist. My new dreams are that I will be well. It can get better. I will get to a point where I am back on my feet and able to work, drive, finish, school. date, and live on my own again. That is what moving back home will do for me. Provide me hope and comfort, realign my dreams, and accept help from those who love me most. It is not easy but how grateful I am for things that are not easy. How blessed I am that I have a home to return to. How blessed I am to have help waiting for me.
God may not bless me at this moment to be well, but he sure has blessed me with tools to survive and keep fighting. To those that suffer from any aliment, I say: be grateful for the things that humble you. For the things that are hard in life. Accept the help where it can be found. What a marvelous journey that we get to go on, that others do not. It is not easy, some days are better than others, but it is our journey. Mine happens to be bringing me back home.
Every day I tell myself "it could be worse" or that "one day I'll be well again". I believe in those words. It is what provides me hope. However, hope does not change reality. The reality is, I can no longer provide for myself. I have extreme dizziness. If I walk too fast I feel I will pass out. It also aggravates the rib with fast motions. I cry every time I have to leave my place because of all the stairs that await me. It takes so much preparation to get myself out the door to do one activity. Just one. After that, I am back in bed, hurting, and tired. I cannot drive myself anywhere. I need rides everywhere I go. My mother has to come do my grocery shopping because I am not strong enough to even carry the bags up my stairs. It takes all my focus to get up those stupid things and even then, sometimes I need help.
My rib hurts so much that it has made me a cripple. Luckily, after speaking with the doctor this last time around, we agreed to stop my current treatment plan. It was taking so much out of me. Sadly, there is no new treatment plan. None of it is FDA approved for SAPHO SYNDROME. No one knows how to treat it. So I am back to square one. There is an idea of possible removal of the rib bone, but that will take some serious convincing. The percentage of it working is very slim and the percentage of it attacking somewhere is great. But that is the plan for now. To convince the Thoracic Surgeon. Those are just some of the issues I deal with in relation to this disease.
Regardless of those things, the point is that I need more help. So after much prayer and thought it was decided that moving back home was my best option. It would allow a bigger space of comfort, more accessible help from my parents, and a place for me to recover with no stupid stairs to keep me indoors as much. It was a really hard decision to come by. All my independence is stripped from me. Rides to church and other social activities will be harder to come by. I will be that much more isolated from my friends. However, there comes a point where illness humbles you. It allows you to make choices on your needs and not your wants. It allows for hope. It provides learning. It also provides a chance to follow what you believe is the right thing to do even though it is hard.
I have come to a point with this illness that I cannot do it alone. I cannot pretend with a life that does not exist. My new dreams are that I will be well. It can get better. I will get to a point where I am back on my feet and able to work, drive, finish, school. date, and live on my own again. That is what moving back home will do for me. Provide me hope and comfort, realign my dreams, and accept help from those who love me most. It is not easy but how grateful I am for things that are not easy. How blessed I am that I have a home to return to. How blessed I am to have help waiting for me.
God may not bless me at this moment to be well, but he sure has blessed me with tools to survive and keep fighting. To those that suffer from any aliment, I say: be grateful for the things that humble you. For the things that are hard in life. Accept the help where it can be found. What a marvelous journey that we get to go on, that others do not. It is not easy, some days are better than others, but it is our journey. Mine happens to be bringing me back home.
Thank you for sharing! You're wonderful!
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