Please don't think I'm being silly either because this is SUPER important to me. My NL an attending at the university hospital. She is going to be doing the 'attending' thing for the next week, per the hospital schedule for her, in the spinal tap clinical area. She wants to be there for mine. The hospital ONLY does spinal taps on Mondays. Next Monday is Halloween! She says she thinks she can get me in and there is one opening left.
OMG I have three kids! They can go trick-or-treating with my significant other but I won't get to go. I've never not gone and it's making me so sad to even think about it. But if I wait and get the spinal tap the week after my NL won't be in there and to refresh memories here she worked directly with Dr. ORO! She thinks she can relieve some of the pressure in my head with the spinal tap, if that's the problem...right then and there. Ugh...what do I do?
Please tell me what you would do. I'm so completely torn. I don't want to make a selfish decision.
I grew up with a mother that had multiple sclerosis. She was diagnosed when I was 4/5 years old, and my sister was 2/3 years old. We learned quickly about the importance of our moms doctor visits or hospital stays or in-home nurses, and supported our Mom when she had to make "selfish" decisions. There were many times when our Mom missed school plays, trick-or-treat or something else because of medication doses, being tired, not feeling well, etc. We never once thought my was selfish...we always knew she had to do what was better for her health. She would listen to our stories or watch video recordings when we got back. We knew that because Mom missed that one event that she would feel better or be around for something else we were doing....
I know you think that doing what's best for you is selfish...but I'm sure that your kids will understand.... Have the significant other take photos of the kids or a video, you can watch it later or have your kids tell you all about their trick or treat experience, and their favorite stops. Sometimes you have to do the inconvenient for the longer "good" thing.
I hope this helps..I know it won't make your decision easier, but to get it from a child of a neurological patient's perspective might help. I now understand better what my mom went through/is going through because of my Chiari...and I'm so glad I understood and supported her then....but that's unrelated to your decision.
Good luck making your decision.... I'll keep you in my thoughts and prayers for a safe spinal tap when it happens, and an easy understanding of your decision for your family.
I would say go for your spinal tap. The Doctor thinks this will help you so if it works maybe you will be able to do even more with your kids in the long run. Maybe you can have them dress up on Sat or Sunday you can bake halloween cupcakes or do some arts and crafts. Look online they have lots of great ideas. Also see if anything is going on where you live over the weekend. There could be some parade or haunted house you can take them to. Good luck with ur spinal tap I pray that it helps you.
Totally get where you are coming from about the kids and Halloween.....If your tap is early in the day and you lay down the rest of the day , ect..maybe you can go to a couple of houses with the kids...but if not..they will get over it...I know , the 'Mother Guilt" comes into play.....You must take care of yourself 1st ..easier said than done.
You got other great advice from Francis and the others.
I too, have a thing on the 31st...EMG....at 5pm!! I was like you, thinking of re-scheduling...but, ya know...my youngest is 11 and she 'gets it'..most of the time!!!!!
Buckeyechick and Christine and the whole dang bunch of us here..know you are not selfish!!!
Thank you all so much for your wonderful advice!!! It made me feel loads better. I had decided to go ahead and do it on Halloween and didn’t they call me today and tell me they changed it to November the 4th! All that worrying for nothing. I guess they are doing the spinal taps on Fridays now all of a sudden. So weird. But I’m okay with that. My dr. will still be there cuz it’s in the same week as her attending schedule.
Thank you again so much. Your words were so much comfort to me. More than I can express. Hugs.
Abby said:
Sweet friend, your not at all selfish. Go for it, your children will understand and want their mom to feel better.
Buckeye. Your unique perspective was very interesting. I am glad you were able to be so understanding of your mothers situation. Must make you so proud when you look back. my older girls are very sympathetic to my bad days as well. They would of understood about trick or treatin. I was just beating myself up over it.
buckeyeschick11 said:
I grew up with a mother that had multiple sclerosis. She was diagnosed when I was 4/5 years old, and my sister was 2/3 years old. We learned quickly about the importance of our moms doctor visits or hospital stays or in-home nurses, and supported our Mom when she had to make “selfish” decisions. There were many times when our Mom missed school plays, trick-or-treat or something else because of medication doses, being tired, not feeling well, etc. We never once thought my was selfish…we always knew she had to do what was better for her health. She would listen to our stories or watch video recordings when we got back. We knew that because Mom missed that one event that she would feel better or be around for something else we were doing…
I know you think that doing what’s best for you is selfish…but I’m sure that your kids will understand… Have the significant other take photos of the kids or a video, you can watch it later or have your kids tell you all about their trick or treat experience, and their favorite stops. Sometimes you have to do the inconvenient for the longer “good” thing.
I hope this helps…I know it won’t make your decision easier, but to get it from a child of a neurological patient’s perspective might help. I now understand better what my mom went through/is going through because of my Chiari…and I’m so glad I understood and supported her then…but that’s unrelated to your decision.
Good luck making your decision… I’ll keep you in my thoughts and prayers for a safe spinal tap when it happens, and an easy understanding of your decision for your family.
i am glad everything worked out for you this time, not knowing how old your children are might i suggest you explain to them the importance of your doctor appointments and care, so in the event this type of situation may arrise again you may might be able to avoid these types of feelings.
To which let me tell you- you are in no way being selfish by caring for yourself but i do understand how you would feel this way, however as with adults i feel if you take the time and explain things to kids they understand a lot more then most adult give them credit for.
I still have a hard time coping with some left over feelings of guilt with what my son had to deal with some of which I have NO memory of-while he understands it, it is my own issue i have to accept.
I’m so glad to be of help! That is the first discussion I"ve truly had experience to give advice on. I guess my perspective is interesting as I’ve been on both the child side/patient loved one side of neurological care…now I"m on the patient side as well.
My mom always beat herself up too…it’s just the “mom instinct” I think. Even now my Mom beats herself up because she can’t always help with what I need now with my Chiari because of her MS. I don’t think it ever gets truly easier. You just find ways to cope through it.
I hope that everything goes wonderfully with your spinal tap. I’ll keep you in my prayers!
tashasheart4u said:
Buckeye. Your unique perspective was very interesting. I am glad you were able to be so understanding of your mothers situation. Must make you so proud when you look back. :) my older girls are very sympathetic to my bad days as well. They would of understood about trick or treatin. I was just beating myself up over it.
buckeyeschick11 said:
I grew up with a mother that had multiple sclerosis. She was diagnosed when I was 4/5 years old, and my sister was 2/3 years old. We learned quickly about the importance of our moms doctor visits or hospital stays or in-home nurses, and supported our Mom when she had to make "selfish" decisions. There were many times when our Mom missed school plays, trick-or-treat or something else because of medication doses, being tired, not feeling well, etc. We never once thought my was selfish...we always knew she had to do what was better for her health. She would listen to our stories or watch video recordings when we got back. We knew that because Mom missed that one event that she would feel better or be around for something else we were doing....
I know you think that doing what's best for you is selfish...but I'm sure that your kids will understand.... Have the significant other take photos of the kids or a video, you can watch it later or have your kids tell you all about their trick or treat experience, and their favorite stops. Sometimes you have to do the inconvenient for the longer "good" thing.
I hope this helps..I know it won't make your decision easier, but to get it from a child of a neurological patient's perspective might help. I now understand better what my mom went through/is going through because of my Chiari...and I'm so glad I understood and supported her then....but that's unrelated to your decision.
Good luck making your decision.... I'll keep you in my thoughts and prayers for a safe spinal tap when it happens, and an easy understanding of your decision for your family.
