Dismissive of MCTD by family
I realize that some of you may not be in my exact position, but I bet you have some suggestions.
My mom is in assisted living, we’re selling condo, lots of family drama surrounding these things. As usual, I’m the one who’s “guiding “ these processes. It HAS to be me bc my siblings are not trustworthy, hence my mom made me her POA.
The problem is that my siblings seem to gloss over my health issues. Idk if they’re unwilling to understand the complexities of MCTD or if it’s an excuse not to BE there. I think there’s resentment that I am the POA, n hence, the “money manager “. Even though I’m handling the paperwork, which is exhausting, I still need help with doing errands for mom .
I think they’re thinking that it’s just a disease that can be overcome with positive thinking or rearranging my life to accommodate my mom.
I wish I COULD rearrange when I flare or am fatigued!!! They don’t understand. I sense frustration and anger on their part.
I’ve tried talking to them and get the usual “ have you tried _________?” Fill in the blank from anything from gluten free to swinging a dead chicken. Or, it must suck to be so tired. It’s insane.
I’m at the point where I don’t want to have any other relationship with them except a cordial one over my mom .
At my breaking point of blowing up in anger and tears of frustration.
Thanks in advance!
Went to the doctors on Friday needless to say his nickname “bad news bear doctor” still stands. I always joke to him he never gives me goodnews hense the nickname, he liked it too.
Back to my point. I have been now told I need to start Intravenous Immunoglobulin Therapy (IVIg) as well as start seeing a Neurologist that specializes in autonomic neuropathy . On top of seeing if my body can handle the medication I need without bad side effects. Some how i always seem to get the bad side effects.
I’ve never had to expierence a IVIg. Has anyone else ? Any pointers or insight would be greatly appreciated.
A bit on edge probably more nerves than anything.
This is actually my first time posting anything about my MCTD with deformative rheumatoid arthritis. I was diagnosed over a year ago. My meds aren't working and there sending me to another specialist. I feel so lost. I try to keep positive but I hurt so bad. I cry alot and don't sleep well and that's when my mind wanders. Unfortunately not to great places. I hate that I can't do what I use to and asking for help to even open a bottle is embarrassing to me. Ive always been the super go getter with a workaholic attitude....now I feel lost and conquered