So my 13 month old's ANC (absolute Neutrophil Count) has dropped below 500 again, causing her to be severely neutropenic. This means her white blood cells cannot fight off infection. It's caused by an antibody her body is making that's killing her WBCs. I am so tired of all of this. The labs, the pokes. the waiting. I live in constant fear that someone will touch her while we are out in town and get her sick. Really? Yes, people try to touch her all the time. Get your freaking hands off of my child. Don't people have boundaries anymore? Do you really know where your hands have been? When was the last time you washed them? It's disgusting. Then I have to take my 5 year old to school and risk even more possible infection because all kids seem to love babies. When did it become socially acceptable to touch babies so much?
I remember when my most prominent thought while leaving the house was did I get me phone, keys, diapers? Now it's, do I have enough sanitizer? Do I have the carrier sling so she doesn't have to ride in the stroller? I have become a blocker for my baby. On instinct when someone gets too close I immediately grab her hands so they cannot touch them. Most of the time it works, but sometimes they grab her feet. Really? She still puts those in her mouth! I also have to be aware of how much sanitizer I use on her because of the alcohol levels.
I don't even want to take my 5 year old to school. I don't want to go anywhere near it! She's too young to go by herself.
If she gets sick again while her ANC is so low we may have to be hospitalized again. Like the last time I'd end up sleeping in her crib with her which does wonders for my back.
My husband is on the ship (Navy) most of the time. Alone again... I am sick of worrying. Sick of it all. I am done with the added stress. I actually forgot to eat twice yesterday because I was so stressed I just was not hungry. I am tired of hospitals. Just tired. I constantly check her to see if she has a fever. When will this end?
The next step is steroids. Hopefully they will work. We went yesterday to pick them up from the Naval Pharmacy... after waiting for 1.5 hours, I bothered them enough to tell me they thought the dose was too high and had a call out to the Doctor... who had already gone home for the day. Really? So I sat in a room full of sick people with my kids just for you to f&*^ around? I was there for over 2 hours before I said screw it and went home. I really hope the Doctor will just call them in to a CVS today.
I'm just.... done.
Tuesday, November 15, 2011
Thursday, November 10, 2011
Just unsure
Sometimes it's difficult to get out of my funk. I just seem to be on autopilot these days. I'm there, without being fully aware. When I am aware I am nervous, jittery and agitated. I feel like my skin can barely contain myself. I am motivated, but only after I leave the house. It's the getting to go part that bothers me. I'm usually a clean person, house wise. Showering and getting ready for my day are not difficult tasks, although I do have to get up at 4AM to get that done. I just don't feel like I'm me. What state is that anyway?
A lot is going on lately. I'm a Navy wife, so he is in and out a lot, mostly out though, gone. Leaving me with 2 kids, one 5 and one 13 months. Getting the oldest to school is easy enough, it's the other one that stresses me. We have recently had a large health scare, she is Neutropenic. That means her body has issues fighting off infection. She has an antibody cruising around her little body attacking her own white blood cells, causing her body to lose any infection it may be battling at the time. Other genetic testing has been sent, but no results yet. She is nursing. 13 months and I only wanted to do 6. Now they say I cannot quit since my antibodies/immunities are the only things fighting for her. She was hospitalized. Bone Marrow Biopsy and a Lumbar Puncture. Both were negative, but have you ever seen your baby go under anesthesia? That's the scariest thing in the world. Her body went limp while her eyes rolled back in her little head. I cannot describe the inner battle I had with myself just to leave her side so the Docs could work. Blood test after blood test for this little one, and I get to be the one holding her down for every poke. I have also had to give her injections (at home) to make her Marrow push out the mature white blood cells to raise her neutrophil levels. (Those are the part of the white blood cells (wbc) that fight the infection.) We've also had tubes put into her ears to decrease ear infections. That was another round of anesthesia. It seems my life revolves around Doctors. I haven't even mentioned my own issues!
I have a cracked l5-s1 that's almost a herniation. Also a fragment has broken off of my t12-l1 and is just floating around causing trouble. Add in some sciatic pain and I have quite the predicament. Narcotics help, but only for a little while, then I have to increase the dose, more and more and more. I only take them when I truly need to, like after a solid week in a crib with my daughter at the hospital. I think I like narcs too much, which is scary. If I have them, I'm almost compelled to take them. My mother was addicted to them, so I'm afraid I have that nasty bit in common with her. I try not to keep them around, or if I do have them and feel myself slipping, I flush them. That way I have to wait it out until I see my Doctor again.
It's irritating, everything. I just don't feel like me. I need something, something is missing and I can't figure it out. I'm stressed to the max. Maybe if the other half was home more... Loneliness, that's what it is. Maybe I need social interaction? My family is about 1000 miles away. Military life is... lonely. Having kids makes it harder to get out and do anything. Being paranoid that my youngest will get sick from some other kid or sitter surely doesn't help.
Where am I?
Is this depression or a lack of motivation?
A lot is going on lately. I'm a Navy wife, so he is in and out a lot, mostly out though, gone. Leaving me with 2 kids, one 5 and one 13 months. Getting the oldest to school is easy enough, it's the other one that stresses me. We have recently had a large health scare, she is Neutropenic. That means her body has issues fighting off infection. She has an antibody cruising around her little body attacking her own white blood cells, causing her body to lose any infection it may be battling at the time. Other genetic testing has been sent, but no results yet. She is nursing. 13 months and I only wanted to do 6. Now they say I cannot quit since my antibodies/immunities are the only things fighting for her. She was hospitalized. Bone Marrow Biopsy and a Lumbar Puncture. Both were negative, but have you ever seen your baby go under anesthesia? That's the scariest thing in the world. Her body went limp while her eyes rolled back in her little head. I cannot describe the inner battle I had with myself just to leave her side so the Docs could work. Blood test after blood test for this little one, and I get to be the one holding her down for every poke. I have also had to give her injections (at home) to make her Marrow push out the mature white blood cells to raise her neutrophil levels. (Those are the part of the white blood cells (wbc) that fight the infection.) We've also had tubes put into her ears to decrease ear infections. That was another round of anesthesia. It seems my life revolves around Doctors. I haven't even mentioned my own issues!
I have a cracked l5-s1 that's almost a herniation. Also a fragment has broken off of my t12-l1 and is just floating around causing trouble. Add in some sciatic pain and I have quite the predicament. Narcotics help, but only for a little while, then I have to increase the dose, more and more and more. I only take them when I truly need to, like after a solid week in a crib with my daughter at the hospital. I think I like narcs too much, which is scary. If I have them, I'm almost compelled to take them. My mother was addicted to them, so I'm afraid I have that nasty bit in common with her. I try not to keep them around, or if I do have them and feel myself slipping, I flush them. That way I have to wait it out until I see my Doctor again.
It's irritating, everything. I just don't feel like me. I need something, something is missing and I can't figure it out. I'm stressed to the max. Maybe if the other half was home more... Loneliness, that's what it is. Maybe I need social interaction? My family is about 1000 miles away. Military life is... lonely. Having kids makes it harder to get out and do anything. Being paranoid that my youngest will get sick from some other kid or sitter surely doesn't help.
Where am I?
Is this depression or a lack of motivation?
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