Hi everyone,
I have been away from a computer and the internet for over two months now. I wanted to check in and say that I hope everyone is doing well!! As for myself, I am struggling. I finally saw a new rheumatologist and he says that I have been greatly undertreated and believes that I am now having CNS involvement
Not pleased with that, but I'm not going to freak out unless something crazy shows up on scans in the near future.
For the time being, he is trying to figure out how to change my treatment. My previous rheumy thought my low WBC and platelets were from the methotrexate, so he took me down to 12.5 mg/week. The new rheumy sounds like he wants to increase that greatly, possibly as the first choice...but he also talked about looking into other immunosuppressants and possibly looking at the biologics as an option. I'm feeling so sick lately and I go to work so that I can live, but I feel like I could just collapse at any given moment and my life will crumble. It isn't a good feeling. The sudden headaches and migraines are simply awful and I can't get them to go away. They're almost always present...its just a matter of how severe they are. My Keppra (anti-convulsant) has been increased to the maximum dose possible due to breakthrough seizures...things just aren't going very well.
Anyway...I hope you all are well. I have a lupus walk that I'm participating in on May 18th and I've raised over $1500 for the walk
Yay! If anyone has suggestions as to how I can deal with the stress of work without making myself sicker, let me know. I'm really starting to struggle with it a lot. I don't know if it means that I can't handle 40 hour work weeks or if I'm just not in the right job...but something needs to change. At least for a while. Someone at work suggested that I apply for donated sick hours, since I only recently started accumulating mine. I just don't know if it will help to take 2 days off...I feel like I need a month or something instead (ha!). On the plus side, I did get the chance to take my dogs to the park today for an hour and it was MUCH needed. I felt so much happier afterward.
Okay, that's it! Take care, everyone
kit
I have been away from a computer and the internet for over two months now. I wanted to check in and say that I hope everyone is doing well!! As for myself, I am struggling. I finally saw a new rheumatologist and he says that I have been greatly undertreated and believes that I am now having CNS involvement
For the time being, he is trying to figure out how to change my treatment. My previous rheumy thought my low WBC and platelets were from the methotrexate, so he took me down to 12.5 mg/week. The new rheumy sounds like he wants to increase that greatly, possibly as the first choice...but he also talked about looking into other immunosuppressants and possibly looking at the biologics as an option. I'm feeling so sick lately and I go to work so that I can live, but I feel like I could just collapse at any given moment and my life will crumble. It isn't a good feeling. The sudden headaches and migraines are simply awful and I can't get them to go away. They're almost always present...its just a matter of how severe they are. My Keppra (anti-convulsant) has been increased to the maximum dose possible due to breakthrough seizures...things just aren't going very well.
Anyway...I hope you all are well. I have a lupus walk that I'm participating in on May 18th and I've raised over $1500 for the walk
Okay, that's it! Take care, everyone
kit