My Health
Posted: Sat May 30, 2020 4:46 am
Hello, This is going to be pretty long. I just wanted to give you as much info as I could so you could understand where I am coming from and the needs I have.
I know that I have been here for a long time, on and off since this place started. But, I have kept a lot from y'all. When I started on here, I was really cautious and kept to my alias, only giving out info once in a great while. So, now with social media and video calls and all, I think it is safe to say that you all have learn a bit more about me than usual.
Anyway, what I am getting at is that I am willing to disclose some info about me that not many past members know about. That is that I am pretty sick. I have been since I was a baby.
I have Systemic Lupus Erythematosus, or SLE, which effects my whole body. I was diagnosed at age 4 and both my doctors and parents decided not to give me any treatment. The treatment at the time was just steroids and the treatment they have now, was just being made or was in the testing stages. So, they decided that letting the disease run its course would be better than the side effects of treatment since I was so young. With that, the disease was active until I was 14 and I was declared in remission, which was a miracle since they didn't think I would live past the age of 12. I graduated highschool, started college, met my (now) husband and got married.
My husband and I went straight into ministry as Youth With a Mission missionaries. We did our DTS in '09-'10 and in January of '10 we went to South Africa and Mozambique for our outreach for two months. About half a year after we got back from our outreach, I was around 22 at the time, I started having "episodes", somewhat seizure like, and ones that were declared Non-Epilectic. I didn't think anything of it, but then I started getting rashes when I was in the sun and other things started happening. It wasn't until we left that ministry and moved, that I decided I would finally get checked out and found out that the disease was pretty active again. That was when I was 26.
Since then, I am now 31, I have been on four different treatments and I am now on two treatments. One treatment is in pill form that I take every day and the other is an infusion that I go in and get once a month. Both treatments are immunosuppresants, so I barely have an immune system.
Since I didn't have the treatments during my childhood, letting the disease run its course caused a lot of problems in the long run that I am now dealing with as an adult. The disease, SLE especially, effects EVERYTHING. My organs, my skin, my joints, etc. It has especially effected my digestive system, my brain and my joints.
At the moment, I am at a usual level of 4-5 in pain everyday. No over the counter pain meds work for me, neither does some prescriptions. So I mainly deal with it and leave it at that unless it gets higher. I also have problems with memory, mostly my short term. I have problems with talking because I lose my train of thought or I forget a word. I have trouble eating because my digestive system doesn't work like normal.
Along with all of that I have the other stuff that comes with the active lupus which is rashes, lesions, sores, headaches, fatigue, nausea, etc. Some of which is caused by the treatment I am on.
So, just pray for me. I can't really work a nine to five job and I am trying to get into the career I want. I am trying to finish my AA and then I am going onto my bachelors.
Stress and sun are two of the major triggers for lupus and so if I have too much stress or I am in the sun too long (which I live in Southern California, sun is must) I can get a flare up. So pray that these triggers will not happen, especially since we are going into the summer season.
I know that I have been here for a long time, on and off since this place started. But, I have kept a lot from y'all. When I started on here, I was really cautious and kept to my alias, only giving out info once in a great while. So, now with social media and video calls and all, I think it is safe to say that you all have learn a bit more about me than usual.
Anyway, what I am getting at is that I am willing to disclose some info about me that not many past members know about. That is that I am pretty sick. I have been since I was a baby.
I have Systemic Lupus Erythematosus, or SLE, which effects my whole body. I was diagnosed at age 4 and both my doctors and parents decided not to give me any treatment. The treatment at the time was just steroids and the treatment they have now, was just being made or was in the testing stages. So, they decided that letting the disease run its course would be better than the side effects of treatment since I was so young. With that, the disease was active until I was 14 and I was declared in remission, which was a miracle since they didn't think I would live past the age of 12. I graduated highschool, started college, met my (now) husband and got married.
My husband and I went straight into ministry as Youth With a Mission missionaries. We did our DTS in '09-'10 and in January of '10 we went to South Africa and Mozambique for our outreach for two months. About half a year after we got back from our outreach, I was around 22 at the time, I started having "episodes", somewhat seizure like, and ones that were declared Non-Epilectic. I didn't think anything of it, but then I started getting rashes when I was in the sun and other things started happening. It wasn't until we left that ministry and moved, that I decided I would finally get checked out and found out that the disease was pretty active again. That was when I was 26.
Since then, I am now 31, I have been on four different treatments and I am now on two treatments. One treatment is in pill form that I take every day and the other is an infusion that I go in and get once a month. Both treatments are immunosuppresants, so I barely have an immune system.
Since I didn't have the treatments during my childhood, letting the disease run its course caused a lot of problems in the long run that I am now dealing with as an adult. The disease, SLE especially, effects EVERYTHING. My organs, my skin, my joints, etc. It has especially effected my digestive system, my brain and my joints.
At the moment, I am at a usual level of 4-5 in pain everyday. No over the counter pain meds work for me, neither does some prescriptions. So I mainly deal with it and leave it at that unless it gets higher. I also have problems with memory, mostly my short term. I have problems with talking because I lose my train of thought or I forget a word. I have trouble eating because my digestive system doesn't work like normal.
Along with all of that I have the other stuff that comes with the active lupus which is rashes, lesions, sores, headaches, fatigue, nausea, etc. Some of which is caused by the treatment I am on.
So, just pray for me. I can't really work a nine to five job and I am trying to get into the career I want. I am trying to finish my AA and then I am going onto my bachelors.
Stress and sun are two of the major triggers for lupus and so if I have too much stress or I am in the sun too long (which I live in Southern California, sun is must) I can get a flare up. So pray that these triggers will not happen, especially since we are going into the summer season.
Thanks for sharing all that with us.