Reply To: Need cheering up…….
[QUOTE=jc10]Have been getting more and more depressed, can’t seem to stop thinking about all this…..
My dr. has at least decided to let me stretch out the IVIG treatment over 5 days instead of the original 2 days. I start Monday morning.
He still thinks it is likely CIDP but he is not sure since my CSF protein and immune markers were all normal. I spoke to another Dr. to see about getting a second opinion. He said that after reviewing my records that he strongly disagrees with my current Dr.’s RX for IVIG, due to the lack of elevated proteins etc. He said he only orders IVIG when a patient has become severely disabled…I’m still walking ok, just weak and having a hard time with stairs or walking any distance but feels like I’m getting weaker every day and the numb feelings are spreading He also said he would require the biopsy, of which my current dr. is wanting to wait to see if I respond to IVIG before we do that. I don’t know who is right or what the best course of action is. Part of me is grateful I can even try the IVIG but other parts of me wonder, since we don’t have a firm dx, if it could even be contraindicated…
I keep trying to talk myself out of feeling so depressed but the sadness is overwhelming, to the point I’m wondering if it could be a side effect of my illness. If any of you have any tips on how to deal with the depression or the feeling “so different” from everyone else, let me know. Of course, I’m grateful for every day but being a single mom, I’ve been obsessed with how this may effect my son’s life. I want him to be happy and feel secure but I feel so insecure and scared right now that feel like I’m falling short of being the best mom I can be…. this has been his first week back at school and I already screwed up yesterday and forgot it was early release day so I was 25 mins late picking him up![/QUOTE]
When I was admitted to the hospital, I was actually started on the IVIG treatments before I was diagnosed. They did tons of tests on me, as you know. My doctor has mentioned doing the biopsy, has not ruled it out, but he doesn’t want to do it if he doesn’t have to.
I’m not the one to make it all better for you but I can be there to listen. I look strong and happy go lucky on the outside. All of my nurses would comment about how brave I am for being so perky and my neurologist told my husband many times that he doesn’t think I understand the seriousness of what is going on with me or maybe it just hasn’t hit me yet.
How old is your son, if I may ask? He is going to admire you even more because your not just a single mom, your a single mom fighting every day to do your best for you and for him. He will see that. I have recently learned that my great uncle and my aunt also have this same disease. As I was growing up, my aunt was a single mom. I remember her being very sick (she has several other serious diseases on top of this), my cousin Zac, never left her side. He learned to understand and once he is old enough to understand, it will be easier.
As far as the depression being an issue, we are all going to have it. If it’s too much for you, don’t be afraid to mention it to your doctor. Many people take extra medications just because of the side effects. But if you need an ear, I am here.