I haven't been vocal or forthcoming about some health crap that's been going on. To be honest, there's been so many other friends & family members with health scares, med issues, illnesses, and other not-so-fun things, I haven't wanted to add to it. But now that I don't need vibes or whatever other mystical internet powers I might have once summoned, I thought I'd share & get it out in the open to the 2 people who read this blog :)
Here's the "as condensed as I can get it" version:
3 years ago (ish) I got a CT scan. I can't even remember why..... Add that to some weird blood work results, losing my hair, joint pains, and extreme fatigue, and I started seeing an oncologist/hematologist, and endocrinologist and a rheumatologist to see what was going on. Lots of mystery surrounding the zillion appointments and gallons of blood I was giving over for testing. The CT scan I had showed abnormal lymph node growth, and we decided to monitor it. I was also told I *may* have Sjogren's syndrome, but they couldn't confirm. I don't know why.. It's not a widely tested and known disease, though its gaining in understanding... It was all very weird & unsettling.
Then I got pregnant, didn't have a f/u scan obviously, and just decided to focus on having a happy & healthy pregnancy. No meds, no tests, no nothing. Well, I did have more monitoring than normal - the suspected Sjogren's caused me to be high risk, as there are antibodies present that can cross over the placenta and damage the baby's heart. That was all fine & unobtrusive testing, nothing to do with blood results or lymph nodes.
I didn't call the Oncologist again until last summer. Went back to him, blood numbers were still wonky, CT scan showed that the lymph node had doubled in size - and was in a basically impossible place to biopsy. The only way to get it is to go cut open your stomach & go through to the back. Um, pass. Awesome all around... onto more testing. All my blood tests come back borderline, slightly elevated, etc. It's ridiculous. Nothing is a "hell yes this chick has X disease" but nothing says flat out no, either. Weird.
PET scan showed high levels of activity in more than one area. (Commence freak out). Bring on the bone marrow biopsy... not as awful as I thought it would be, but about as fun as you might imagine. The good news with the BMB was that it was NOT cancer. That was my Christmas gift last year.
Had a follow-up CT scan last week & my oncologist called me last night - over the last 6 months, ZERO growth in the lymph nodes, and no additional spots of activity or weird stuff showing up on the scans!! So I don't have to go back and see him until Oct, where I'll have more blood work and possibly another scan.
Still seeing the rheum for the Sjogrens - but my symptoms are relatively mild compared to others'. Like - more annoying than debilitating, so I'm lucky enough to not have to be on meds right now. Eventually I probably will, but I took the stance with the doc if I don't "have" to be on meds, I don't want to. And he agreed. The endocrinologist said my thyroid was borderline, not enough to do anything about it. I do have nodules on it, and I have to keep monitoring them for growth & changes, but I guess lots of people have them without ever knowing or having them affect their health.
So that's it. I watch the lymph nodes for growth or changes or more of them showing up. I pay closer attention to my body and do some self tests to see if I can feel lymph nodes in any other areas. I monitor my Sjogren's symptoms for changes. I deal with the hair loss, the inability to lose weight, the fatigue & the joint aches and just be happy it's not cancer.
For now. Because, as is my luck, Sjogren's is not only known to cause lymph node abnormalities (lymph node adenopathy, to use the jargon), it is also directly linked to lymphoma. Of which there are over 30 kinds. Ridiculous no?
One of these days I'm gonna wake up with zero pain, bright eyed and bushy tailed, 40lbs lighter, a full head of hair and no anxiety about what's next. One day :)
This was supposed to be an uplifting post about how I got great test results. As I write it out and realize it's doom and gloom, I guess I'm still kinda annoyed at all the testing and crap I went through, all to be told it's probably the Sjogren's that is causing everything, but we have to monitor you forever just in case. Haha, way to go, Cartzy. Always the optimist! Good grief.
Thursday, April 7, 2011
Thursday, March 24, 2011
Go me!
I may be a bitch sometimes, but that doesn't mean I like being a bitch, or even being in any sort of confrontation at all for that matter. I get so incredibly nervous, I crack jokes to ease the tension, I often and easily turn bright red (like CRIMSON), and I tend to be self deprecating by putting some of the blame of the situation on me in order to lessen the blow of what I need to say, even if I had nothing to do with it.
Not yesterday.
I spoke with the director of the daycare. I was NOT a bitch at all...I actually thought I handled myself quite well, I didn't cry, and was proud of myself for being a grown up - Ha! Imagine that...
I started off by asking if she had heard that A was having any behavioral issues with pushing/hitting/biting etc., and she said no. I said since she started in T1, she has been doing that more, but I mentioned how difficult it must be to not be able to communicate your needs or ask for something you want. I was clear that I was uncomfortable with the feeling I get with Miss Victoria...I did say that I understood that it sounded kind of dumb, but the only way I knew how to describe it was a gut feeling that V doesn't like Alexandra. I told her I know not everyone is warm and fuzzy... I know this isn't the infant room and she doesn't need to be cuddled all the time and that I want her to be learning more independence... I know that it's common for toddlers to push and hit, but that it was as if Allie was the first kid to ever do so under V's watch... I know she'll be on the receiving end and the giving end at some times, I have no delusions that my child is perfect...I imagine she gets very frustrated when she can't say what she needs, but that she is the youngest in the class and should not be disciplined or dealt with the same as kids who are 6+ months older than she is...I know to expect that A has bad days sometimes, but I expect positive feedback as well...I try to ask what V does to handle misbehavior so I can be consistent at home, but I don't get much feedback... I never worry that A is not safe or not being taken care OF - I worry that she's not being cared FOR, and that her treatment will be different from that of the other children who V likes better.
The director, Betsy, was surprised. Apparently V is warm and fuzzy, and she doubted that she doesn't like Alexandra. But thankfully, she was very receptive to my concerns...she said I need to feel comfortable with Allie's care, and know for certain that she is welcomed, loved and nurtured at all times. She said that V does know how to deal with kids of different developmental levels...
I'm not sure exactly what will happen from here. My fear is that V will know I talked to Betsy and be super weird to me/around me now. But for sure, A will no longer be in her immediate group of 4 when the class breaks up into 2 groups for activities. Betsy said she'll phrase it so that the other teacher, Gina, deals with the younger kids -- and there is another girl coming up into the room with the exact same birthday as Allie, so that is great!
I felt a lot better after talking with her, but I guess we shall see how things go from here on out.
Today when I dropped A off, Gina told me that Allie is a natural leader and doing so much better with her words (she told me that yesterday, too). When she doesn't know what to say, she finds a way to tell you with other gestures. It was really nice to hear!
I try so hard not to be THAT parent - the one who calls to check in, questions or challenges the daycare, or tells them how to do their job. They are the child care experts, but I am the expert on my child - and this was my first real mommy moment in which I had to stand up for my kid when she couldn't do it for herself. Go me!
Not yesterday.
I spoke with the director of the daycare. I was NOT a bitch at all...I actually thought I handled myself quite well, I didn't cry, and was proud of myself for being a grown up - Ha! Imagine that...
I started off by asking if she had heard that A was having any behavioral issues with pushing/hitting/biting etc., and she said no. I said since she started in T1, she has been doing that more, but I mentioned how difficult it must be to not be able to communicate your needs or ask for something you want. I was clear that I was uncomfortable with the feeling I get with Miss Victoria...I did say that I understood that it sounded kind of dumb, but the only way I knew how to describe it was a gut feeling that V doesn't like Alexandra. I told her I know not everyone is warm and fuzzy... I know this isn't the infant room and she doesn't need to be cuddled all the time and that I want her to be learning more independence... I know that it's common for toddlers to push and hit, but that it was as if Allie was the first kid to ever do so under V's watch... I know she'll be on the receiving end and the giving end at some times, I have no delusions that my child is perfect...I imagine she gets very frustrated when she can't say what she needs, but that she is the youngest in the class and should not be disciplined or dealt with the same as kids who are 6+ months older than she is...I know to expect that A has bad days sometimes, but I expect positive feedback as well...I try to ask what V does to handle misbehavior so I can be consistent at home, but I don't get much feedback... I never worry that A is not safe or not being taken care OF - I worry that she's not being cared FOR, and that her treatment will be different from that of the other children who V likes better.
The director, Betsy, was surprised. Apparently V is warm and fuzzy, and she doubted that she doesn't like Alexandra. But thankfully, she was very receptive to my concerns...she said I need to feel comfortable with Allie's care, and know for certain that she is welcomed, loved and nurtured at all times. She said that V does know how to deal with kids of different developmental levels...
I'm not sure exactly what will happen from here. My fear is that V will know I talked to Betsy and be super weird to me/around me now. But for sure, A will no longer be in her immediate group of 4 when the class breaks up into 2 groups for activities. Betsy said she'll phrase it so that the other teacher, Gina, deals with the younger kids -- and there is another girl coming up into the room with the exact same birthday as Allie, so that is great!
I felt a lot better after talking with her, but I guess we shall see how things go from here on out.
Today when I dropped A off, Gina told me that Allie is a natural leader and doing so much better with her words (she told me that yesterday, too). When she doesn't know what to say, she finds a way to tell you with other gestures. It was really nice to hear!
I try so hard not to be THAT parent - the one who calls to check in, questions or challenges the daycare, or tells them how to do their job. They are the child care experts, but I am the expert on my child - and this was my first real mommy moment in which I had to stand up for my kid when she couldn't do it for herself. Go me!
Wednesday, March 23, 2011
One of those days.....
I'm a crying, blubbery mess today.
I'm frustrated with A's daycare because I feel like her main teacher doesn't like her - she always tells me what A has done 'wrong' that day, and never any positives. And she sounds like A is the first child to ever push another.... She is the YOUNGEST in the class by several months. Can you imagine how frustrating it must be to not be able to communicate your needs? She's doing better verbally, but she's not up to where the other kids are, and I think because she is so tall, people forget that she's still a baby. MY baby. It makes me angry. It makes me sad. And it shouldn't, but it makes me feel like my baby is doing something wrong.
Then today I didn't unplug the toaster. I don't remember if I unplugged the iron. And the crockpot is going, so there's one MORE fire risk. And Jethro is home, so that increases my fears even more.... I would never forgive myself! Ugh, I'm seriously ridiculous today, and I know it. I need a mental health day.
I'm frustrated with A's daycare because I feel like her main teacher doesn't like her - she always tells me what A has done 'wrong' that day, and never any positives. And she sounds like A is the first child to ever push another.... She is the YOUNGEST in the class by several months. Can you imagine how frustrating it must be to not be able to communicate your needs? She's doing better verbally, but she's not up to where the other kids are, and I think because she is so tall, people forget that she's still a baby. MY baby. It makes me angry. It makes me sad. And it shouldn't, but it makes me feel like my baby is doing something wrong.
Then today I didn't unplug the toaster. I don't remember if I unplugged the iron. And the crockpot is going, so there's one MORE fire risk. And Jethro is home, so that increases my fears even more.... I would never forgive myself! Ugh, I'm seriously ridiculous today, and I know it. I need a mental health day.
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