Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I've mentioned here so many times how blessed I've been to have a wonderful supportive husband. One who helps taxi the children, fix meals, clean, do laundry, etc. when I'm down and sick. Of course, when I'm well I pick up the pieces and help out.
As you all know by now, I just got back out of the hospital. While there they were injecting me with 4 mgs. of IV Dilaudid every 3 hours for at least 16 hours. You can imagine how out of sorts I've been trying to wean off that poison since I've been home. Most days I don't know what day it is or where I am. Moreover, I still don't feel well....(which I'll post separately). I've been very weak barely being able to walk.
Yesterday, I awoke weak, confused and hungry. Problem was that without making a complicated meal there was nothing to eat because we hadn't been to the store. It was 4:00 in the afternoon and I hadn't eaten or had anything to drink all day. My daughter needed to go to dance class and my husband made it clear that he was tied up with work. So, I got up, drove her to class and ran to the store to buy fruit and snacks....Over $100 of easy and healthy food that I could get myself to help build up my strength.
By the time I got home I could barely move and felt like I might pass out. I started to bring in the groceries and put them away. My husband sat in his office. Finally, I yelled in, "Are you going to help?" He stormed in and said, "Sure, God forbid if I do something else than help you and the kids." WHAT!!! I just went to the store and dropped off our daughter so he wouldn't have to...but because I was weak and recovering I asked for his help. As we put groceries away I was admiring the dirty dishes in the sink, the filthy counter top and the pile of laundry growing in our laundry room. Angry, I snapped back..."Well for someone who is helping so much...not much is getting done. It's almost 5:30 and I had to eat a container of blackberries in the car on the way home because your wife who just got home from the hospital had nothing to eat all day AND I took our daughter to dance class so you wouldn't have to. Sorry I'm not well enough to also do laundry and clean the house!"
Fuming he started slamming dishes and cleaning the kitchen. He didn't speak to me most of the evening.,,,except at one point when he went to pick up our daughter. He called and asked if I was going to be upset with him all night. I said "No, of course not. I just need your help right now." Then he proceeded to pass me in the halls and ignore me the rest of the night.
Today he brought me a plate of food the moment I woke up. I said, "You didn't have to do that...but thank you." Angry he said, "Well, I didn't feel like being yelled at today." WHAT??? Then he walked away and when I tried to talk to him about it he wouldn't respond.
I never thought I was a burden until now. This is when I begin to feel like my family would be better off without me. What do you do when the grace is gone???
Khrystine
As you all know by now, I just got back out of the hospital. While there they were injecting me with 4 mgs. of IV Dilaudid every 3 hours for at least 16 hours. You can imagine how out of sorts I've been trying to wean off that poison since I've been home. Most days I don't know what day it is or where I am. Moreover, I still don't feel well....(which I'll post separately). I've been very weak barely being able to walk.
Yesterday, I awoke weak, confused and hungry. Problem was that without making a complicated meal there was nothing to eat because we hadn't been to the store. It was 4:00 in the afternoon and I hadn't eaten or had anything to drink all day. My daughter needed to go to dance class and my husband made it clear that he was tied up with work. So, I got up, drove her to class and ran to the store to buy fruit and snacks....Over $100 of easy and healthy food that I could get myself to help build up my strength.
By the time I got home I could barely move and felt like I might pass out. I started to bring in the groceries and put them away. My husband sat in his office. Finally, I yelled in, "Are you going to help?" He stormed in and said, "Sure, God forbid if I do something else than help you and the kids." WHAT!!! I just went to the store and dropped off our daughter so he wouldn't have to...but because I was weak and recovering I asked for his help. As we put groceries away I was admiring the dirty dishes in the sink, the filthy counter top and the pile of laundry growing in our laundry room. Angry, I snapped back..."Well for someone who is helping so much...not much is getting done. It's almost 5:30 and I had to eat a container of blackberries in the car on the way home because your wife who just got home from the hospital had nothing to eat all day AND I took our daughter to dance class so you wouldn't have to. Sorry I'm not well enough to also do laundry and clean the house!"
Fuming he started slamming dishes and cleaning the kitchen. He didn't speak to me most of the evening.,,,except at one point when he went to pick up our daughter. He called and asked if I was going to be upset with him all night. I said "No, of course not. I just need your help right now." Then he proceeded to pass me in the halls and ignore me the rest of the night.
Today he brought me a plate of food the moment I woke up. I said, "You didn't have to do that...but thank you." Angry he said, "Well, I didn't feel like being yelled at today." WHAT??? Then he walked away and when I tried to talk to him about it he wouldn't respond.
I never thought I was a burden until now. This is when I begin to feel like my family would be better off without me. What do you do when the grace is gone???
Khrystine
And MM3, time for another Long Island Ice Tea!
Matchmaker, Matchmaker,
Make me a match,
Find me a find,
catch me a catch
Matchmaker, Matchmaker
Look through your book,
And make me a perfect match
Well I think we all have the perfect match but just need to remember that we cant take each other for granted and like Aron says we need to remember that just because the tension is there doesnt mean the love isn't.
This is a cruel illness and it takes strength in both partners to make it tolerable. I could have NEVER made it thru 33 straight days in the hospital without my wife and I tell her this all the time.
Hang in there MM3. It will get better.
TJ
Aron...Welcome! It is so nice to have another male here and your words have support have brought me much needed peace. I've no doubt TJ is thrilled to not be the only male here anymore. I hope that I am able to help you as much as you've helped me.
As for my husband and I...we're cool. Just like this disease, we have our highs and lows and at the end of the day we still love each other very, very much. Hopefully, the difference will be that while our marriage will remain strong....the IIH will eventually die off.
Thank you all for your support.
Much love,
Khrystine