Tuesday, February 3, 2009
Wednesday, January 7, 2009
Two Good Years, etc.
I wish I could write here consistently, but life seems to get in the way. Or maybe I just let it get in the way!
This is still a really difficult time for us. We miss Bill and we miss the family that we'd come to depend on. What I mean is, we just sort of took for granted that they would always be, and now that family is fragmented. Our daughter is not reacting to this death the way that we expected. I don't want to go into a lot of detail, but her behavior these past weeks is perplexing at best, and frightening at worst. She needs to grieve, and she is not. I know, I know, we all grieve differently. But she is not grieving. She's going on with her life as if he was merely erased from our memories. And that is frustrating and aggravating - because many many of us are grieving this loss. This loss belongs to all of us. But the memories they shared for 10 years have to be dealt with. I think she is afraid to feel her grief, but that's just my theory.
And yes, DH is out of work, but hopefully this time around it's just temporary. So he's not stressing about it, and neither am I. Yet.
I'm now 2 yrs post-op pituitary surgery, and I have some disturbing symptoms that I fear (and I HATE to even think this) may be a recurrence of Cushing's. I still feel better than before surgery, but my weight loss has stopped for the most part, and I only lost about half of what I gained. I have achey days, like the past two, where everything seems to hurt. The under the rib pain persists and I really suspect that has something to do with my adrenal glands. Some days I seem to do nothing but pee. Fatigue comes and goes, but I like to think that has something to do with depression. (I admit it - I'm depressed. I get depressed every winter when the sun hides for weeks at a time. And this year there are even bigger reasons to be depressed.) And I am not sleeping well most nights, even with the help of medication. Dr. F says it could be a recurrence, or low growth hormone, or possibly a thyroid problem, but he raised my Levoxyl dose and I'm not seeing a big difference after 6 weeks. Then there are the ever present digestive problems too - the local doc seems to think either ulcer or pancreas or possibly another blocked biliary duct. Whatever it is, being under-employed and paying $600 a month for high deductible insurance, I can't afford to start testing. So I wait and try to think positively.
Still, two years after surgery, I do not regret having had it for one moment. Even if Cushing's is rearing it's nasty little tumor-head once again, at least I've had two good years I wouldn't have had without the surgery. And that is counted among my blessings.
This is still a really difficult time for us. We miss Bill and we miss the family that we'd come to depend on. What I mean is, we just sort of took for granted that they would always be, and now that family is fragmented. Our daughter is not reacting to this death the way that we expected. I don't want to go into a lot of detail, but her behavior these past weeks is perplexing at best, and frightening at worst. She needs to grieve, and she is not. I know, I know, we all grieve differently. But she is not grieving. She's going on with her life as if he was merely erased from our memories. And that is frustrating and aggravating - because many many of us are grieving this loss. This loss belongs to all of us. But the memories they shared for 10 years have to be dealt with. I think she is afraid to feel her grief, but that's just my theory.
And yes, DH is out of work, but hopefully this time around it's just temporary. So he's not stressing about it, and neither am I. Yet.
I'm now 2 yrs post-op pituitary surgery, and I have some disturbing symptoms that I fear (and I HATE to even think this) may be a recurrence of Cushing's. I still feel better than before surgery, but my weight loss has stopped for the most part, and I only lost about half of what I gained. I have achey days, like the past two, where everything seems to hurt. The under the rib pain persists and I really suspect that has something to do with my adrenal glands. Some days I seem to do nothing but pee. Fatigue comes and goes, but I like to think that has something to do with depression. (I admit it - I'm depressed. I get depressed every winter when the sun hides for weeks at a time. And this year there are even bigger reasons to be depressed.) And I am not sleeping well most nights, even with the help of medication. Dr. F says it could be a recurrence, or low growth hormone, or possibly a thyroid problem, but he raised my Levoxyl dose and I'm not seeing a big difference after 6 weeks. Then there are the ever present digestive problems too - the local doc seems to think either ulcer or pancreas or possibly another blocked biliary duct. Whatever it is, being under-employed and paying $600 a month for high deductible insurance, I can't afford to start testing. So I wait and try to think positively.
Still, two years after surgery, I do not regret having had it for one moment. Even if Cushing's is rearing it's nasty little tumor-head once again, at least I've had two good years I wouldn't have had without the surgery. And that is counted among my blessings.
Saturday, December 27, 2008
Christmas is Over
We got through Christmas. It was pretty rough, but we got through. We thought that would be the hard part, but a therapist tells us that the hard part is still ahead of us...after the letdown from the holidays. At least we are prepared for it now.
On Christmas morning, imagine the surprise the girls got when they saw this:
They were all excited to see those bootprints on the hearth. We have a little secret about those prints, and maybe we will tell them one of these days. For now, I will let you all wonder. Let's just say their daddy was with us here in spirit.
Tuesday night my friend Mona called me crying. Her 28 yr old nephew had died, the result of a drug overdose. Another senseless tragedy in our little town.
I'm telling you, this is getting old.
I attended the funeral today and when I got up to leave, my legs would hardly hold me up. A few steps and I was ok, but it was weird. I also got a low cortisol headache and came home and took a nap. When I woke up, I went for 10 mg Cortef and in an hour the headache was gone. I think I should have guessed that I was low in cortisol the past few days, since I've had some digestive problems that go along with being AI. Anyway, I feel better now.
Oh - if things weren't hard enough, DH might be out of work again. We will find out Monday for sure. They are eliminating the second shift where he works, but he might get a job on days. We'll see. To be honest, I am not even really too upset over this development after what we've already been going through. I figure it will all work out one way or the other.
S and the girls moved out yesterday. The house is quiet again. We miss them already. And we worry about how reality will set in for our babies now that they are on their own as a family of three.
We had a major thaw with lots of dense fog today. The weather matched our mood! Tomorrow we are supposed to get a blizzard. I hope it settles down soon. I need to get outside and go snowshoeing. And we all really need some sunshine.
Do me a favor and vote for our own MaryO who is up for a Health Blogger award on Wellsphere.com. If she wins this award, it will bring much needed attention to Cushing's. And she deserves it!
http://www.wellsphere.com/maryo-profile/96746
On Christmas morning, imagine the surprise the girls got when they saw this:
They were all excited to see those bootprints on the hearth. We have a little secret about those prints, and maybe we will tell them one of these days. For now, I will let you all wonder. Let's just say their daddy was with us here in spirit.
Tuesday night my friend Mona called me crying. Her 28 yr old nephew had died, the result of a drug overdose. Another senseless tragedy in our little town.
I'm telling you, this is getting old.
I attended the funeral today and when I got up to leave, my legs would hardly hold me up. A few steps and I was ok, but it was weird. I also got a low cortisol headache and came home and took a nap. When I woke up, I went for 10 mg Cortef and in an hour the headache was gone. I think I should have guessed that I was low in cortisol the past few days, since I've had some digestive problems that go along with being AI. Anyway, I feel better now.
Oh - if things weren't hard enough, DH might be out of work again. We will find out Monday for sure. They are eliminating the second shift where he works, but he might get a job on days. We'll see. To be honest, I am not even really too upset over this development after what we've already been going through. I figure it will all work out one way or the other.
S and the girls moved out yesterday. The house is quiet again. We miss them already. And we worry about how reality will set in for our babies now that they are on their own as a family of three.
We had a major thaw with lots of dense fog today. The weather matched our mood! Tomorrow we are supposed to get a blizzard. I hope it settles down soon. I need to get outside and go snowshoeing. And we all really need some sunshine.
Do me a favor and vote for our own MaryO who is up for a Health Blogger award on Wellsphere.com. If she wins this award, it will bring much needed attention to Cushing's. And she deserves it!
http://www.wellsphere.com/maryo-profile/96746
Wednesday, December 17, 2008
Today I Didn't Cry
Today was better. I was busy every minute. We went shopping with friends for the better part of the day, then rushed home so DH and the other guy could go to work and I could meet S and go eat with her and the girls before their Christmas program at school. They looked so pretty in their new velvet and satin dresses. On the way there, Gabby said "I have a surprise for you at the program, Mom!" and Bahley said "She's reading a poem!" and then it was revealed that apparently Gabby had announced it earlier, so it wasn't really a surprise. The program was precious and when Gab had read her poem and was heading back to her seat, Bahley looked at her, mouthed the words "good job!" and gave her a thumbs up. It was really sweet. (If you saw them argue and fuss at each other, you'd appreciate the good times, too!)
This was Bahley's first school program and I thought their dad should be here watching this with us. I teared up, but I didn't cry. It's getting easier to hold the tears back. But I am feeling angrier.
What a great loss.
This was Bahley's first school program and I thought their dad should be here watching this with us. I teared up, but I didn't cry. It's getting easier to hold the tears back. But I am feeling angrier.
What a great loss.
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