glimpse into my world....
This past Sunday, I came home from church and a special gathering, very tired and in some pain. Long days are hard on me, mostly physically and especially if the night before I didn't sleep well.
I decided to lay on the couch and flip TV channels. I came across Discovery Fit and Health and saw a preview of a man with deformities like myself. When it was made known that it was Neurofibromatosis ( or NF--the condition have) I was intrigued and continued to watch it.
It was something I can relate to and I have never really known anyone who has suffered from this disorder as I do. There's no cure and basically it's a life long cycle of surgeries after surgeries. I know a lot about this disorder due to myself suffering from it but also my own research on the topic. When I was watching this show, it blessed me in so many ways.
As a background, NF has two types: Type I and Type II. Type I is the most common and least harming to the body; Type II has a huge chance of the tumors becoming cancerous; however, both types do the same thing-- deformities due to the nerve tissues growing out of control.
I have Type I; the two men on TV has Type II. I'm blessed.... so very very blessed.
I was able to fully relate to the emotions that come along with this disease. The stares, the looks, the questions, the criticisms, etc. But one thing that the two men said that I could say "Amen" to was the fact that this disease is what makes them who they are now; it molded their character and life.
Unlike the two men, I started the countless, risky, surgeries since I was very very young. I'm so thankful that the "worse" of surgeries is over, even if I do have to continue to have them as time passes on because really, that's the only treatment for this disease. I had wonderful reconstructive surgeon growing up and when I was 16 yrs old, he retired and handed me down to another wonderful reconstructive surgeon (my last surgeon's resident), who is now still my surgeon. It's hard to believe he has known me since I was 13yrs old. I have every confidence in my surgeon, but ultimately, my confidence lies in the hands of my Savior...the Great Physician. I couldn't help but wonder if the two men being interviewed on the TV show had the same Great Physicians as I do. Because honestly, there is no Great Physician than God. I continue to accept who I am and how I was created. I don't think my life of trusting in God would have been the same if I didn't go through with the many health issues as I did as a young child.
I still go through health issues constantly. I get sick a lot, but it's something I'm used to. My GI issues may have something to do with my NF but the GI docs at UVA isn't completely 100% sure because the fibroid tumors can be so microscopic that even MRI, colonoscopies, etc won't be able to detect it.
Recently my GI issues has gotten worse. The pain sometimes is so unbearable that all I can do aside from medication, is to lay down almost all the time. My pain has now located itself in three places: lower left, upper right, and mid region. My mid region seems to be the most intolerable recently and once again, my diet strained. It hurts to eat---it even hurts to drink. At times, my day's diet can be just fluids--- that's all I can handle.
At times the pain can be so unbearable that I have to cancel on meeting with friends (and I feel as if I let my friends down) or I can't get myself to church. That's when it hits hard on me. I hate missing church. I always feel like it's a sin to miss church (due to a childhood church upbringing); but I understand when "others" have reasons to miss church due to their chronic conditions. This is where I don't understand. Why is it so hard to give other people grace and not give grace to yourself? God gives us grace though we don't deserve it. I struggle so much with giving myself grace that I feel as if I'm slamming my head on the wall and still no sense is knocked in! I know, you are your own worse critic, but still it's hard to go through so many health issues that I can't even give myself leeway when I have to cancel at the last minute. It's tough, but I'm learning slowly to give myself grace and not worry about what others my think or feel. But one thing is for sure, God gives us grace, even when others don't (or you think others don't!).
Please continue to keep me in your prayers. The past month have been really hard on me physically and I'm very tired. I have a follow up with my GI doctor next Tuesday. I'll update more when I know more about what's going on. Thanks!
I decided to lay on the couch and flip TV channels. I came across Discovery Fit and Health and saw a preview of a man with deformities like myself. When it was made known that it was Neurofibromatosis ( or NF--the condition have) I was intrigued and continued to watch it.
It was something I can relate to and I have never really known anyone who has suffered from this disorder as I do. There's no cure and basically it's a life long cycle of surgeries after surgeries. I know a lot about this disorder due to myself suffering from it but also my own research on the topic. When I was watching this show, it blessed me in so many ways.
As a background, NF has two types: Type I and Type II. Type I is the most common and least harming to the body; Type II has a huge chance of the tumors becoming cancerous; however, both types do the same thing-- deformities due to the nerve tissues growing out of control.
I have Type I; the two men on TV has Type II. I'm blessed.... so very very blessed.
I was able to fully relate to the emotions that come along with this disease. The stares, the looks, the questions, the criticisms, etc. But one thing that the two men said that I could say "Amen" to was the fact that this disease is what makes them who they are now; it molded their character and life.
Unlike the two men, I started the countless, risky, surgeries since I was very very young. I'm so thankful that the "worse" of surgeries is over, even if I do have to continue to have them as time passes on because really, that's the only treatment for this disease. I had wonderful reconstructive surgeon growing up and when I was 16 yrs old, he retired and handed me down to another wonderful reconstructive surgeon (my last surgeon's resident), who is now still my surgeon. It's hard to believe he has known me since I was 13yrs old. I have every confidence in my surgeon, but ultimately, my confidence lies in the hands of my Savior...the Great Physician. I couldn't help but wonder if the two men being interviewed on the TV show had the same Great Physicians as I do. Because honestly, there is no Great Physician than God. I continue to accept who I am and how I was created. I don't think my life of trusting in God would have been the same if I didn't go through with the many health issues as I did as a young child.
I still go through health issues constantly. I get sick a lot, but it's something I'm used to. My GI issues may have something to do with my NF but the GI docs at UVA isn't completely 100% sure because the fibroid tumors can be so microscopic that even MRI, colonoscopies, etc won't be able to detect it.
Recently my GI issues has gotten worse. The pain sometimes is so unbearable that all I can do aside from medication, is to lay down almost all the time. My pain has now located itself in three places: lower left, upper right, and mid region. My mid region seems to be the most intolerable recently and once again, my diet strained. It hurts to eat---it even hurts to drink. At times, my day's diet can be just fluids--- that's all I can handle.
At times the pain can be so unbearable that I have to cancel on meeting with friends (and I feel as if I let my friends down) or I can't get myself to church. That's when it hits hard on me. I hate missing church. I always feel like it's a sin to miss church (due to a childhood church upbringing); but I understand when "others" have reasons to miss church due to their chronic conditions. This is where I don't understand. Why is it so hard to give other people grace and not give grace to yourself? God gives us grace though we don't deserve it. I struggle so much with giving myself grace that I feel as if I'm slamming my head on the wall and still no sense is knocked in! I know, you are your own worse critic, but still it's hard to go through so many health issues that I can't even give myself leeway when I have to cancel at the last minute. It's tough, but I'm learning slowly to give myself grace and not worry about what others my think or feel. But one thing is for sure, God gives us grace, even when others don't (or you think others don't!).
Please continue to keep me in your prayers. The past month have been really hard on me physically and I'm very tired. I have a follow up with my GI doctor next Tuesday. I'll update more when I know more about what's going on. Thanks!
Comments
I can so relate to your blog. I have had 18 surgeries and have much trouble with my digestion and stomach. Sometimes from nowhere, the pain hits and I am in bed wrenching with pain. I too, believe that God has used this to make me the kind of person that is available to people who suffer. Hang in there dear friend, and yes GOD's Grace is available to you too! Love you sweet friend... much love
Lori Richards