We have an appointment. I'll be seeing Dr. Brown on 9/12, and I'll only need to be in Denver for one day, all follow up will be done here in Billings through Spike.
I'm relieved, and hopeful, so things are pretty good here. My mom and brother and sister left today after arriving Monday. It has been a long but enjoyable week.
We saw Superbad last night. It was pretty funny. I suggest that if you're squeamish about the female anatomy, don't go see this movie.
Please enjoy this Indian version of "Thriller". I hope it brightens your day as much as it brightened mine.
Friday, August 24, 2007
Monday, August 20, 2007
Friday, August 17, 2007
Update - change of plans
Well, we are still going to Denver, but probably not next week.
It turns out that the appointment I had setup was with a doctor that had just graduated medical school. Unfortunately I need a doctor that knows his shizz, so I will be postponing the trip until I've spoken with Dr. Brown's office to schedule my appointment. According to Spike, he's excited to see me.
Elora is teething. Sweet mother of Christ, it is hell on earth. She has now developed a highly obnoxious high pitched scream that pierces the ear drum. It's probably not that flattering to myself to say this, but I think it's so high only dogs can hear it (which is me calling myself a dog, I guess).
I feel terrible for her. She's miserable at times, and needs extra love and kisses, and I give them to her, but I'm exhausted. Thad felt sick yesterday, so I was on baby duty all night with no help whatsoever. Granted, he does it when I'm not there, but he didn't even get to spend any time with me either because he went to bed at 7:30.
So at the moment I'm in appointment limbo, waiting for Dr. Brown's office to call me to schedule my appointment, and trying to get a hold of University of Colorado to cancel my appointment.
Elora has her 6 months shots on Monday (for those of you keeping track, yes she'll be 7 months old, I overslept on the original date of her shots). With her teeth hurting her I'm sure it will be a great time!
It turns out that the appointment I had setup was with a doctor that had just graduated medical school. Unfortunately I need a doctor that knows his shizz, so I will be postponing the trip until I've spoken with Dr. Brown's office to schedule my appointment. According to Spike, he's excited to see me.
Elora is teething. Sweet mother of Christ, it is hell on earth. She has now developed a highly obnoxious high pitched scream that pierces the ear drum. It's probably not that flattering to myself to say this, but I think it's so high only dogs can hear it (which is me calling myself a dog, I guess).
I feel terrible for her. She's miserable at times, and needs extra love and kisses, and I give them to her, but I'm exhausted. Thad felt sick yesterday, so I was on baby duty all night with no help whatsoever. Granted, he does it when I'm not there, but he didn't even get to spend any time with me either because he went to bed at 7:30.
So at the moment I'm in appointment limbo, waiting for Dr. Brown's office to call me to schedule my appointment, and trying to get a hold of University of Colorado to cancel my appointment.
Elora has her 6 months shots on Monday (for those of you keeping track, yes she'll be 7 months old, I overslept on the original date of her shots). With her teeth hurting her I'm sure it will be a great time!
Thursday, August 16, 2007
A roadie and some fair food
So, we met with Spike the pulmonologist yesterday, and here is an overview of how things went:
A) The doctor agrees with the other doctors that this looks like a case of LAM, but there a some things that aren't typical for LAM, for example the asymmetry of the cysts in the lungs, that make him feel that seeing a doctor that has seen more cases of LAM would be a good idea. This doesn't mean it isn't LAM, but in most cases they are symmetrical.
B) There are new cysts, and an existing cyst has gotten quite a bit larger. What is kind of scary about this is that the cyst is pretty close to the lung wall, so we need to be extra observational due to the risk of lung collapse. He didn't feel it was imminent but he did say that avoiding things like flying would be a good idea.
C) We already had an appointment scheduled in Denver for next week, so we are still going to go, but Spike is calling an associate at the National Jewish Medical and Research Center by the name of Dr. Kevin Brown. He is one of the leading doctors working with LAM in the country, and his name was actually given to us by the founder of the LAM Foundation.
So my mom is going to stay here with Elora and the dogs while we make this jaunt down to Denver. We will be staying with friends, and hopfully back before the end of the week. Since all of my scans and breathing tests are up to date the doctors should be able to see all of them in advance.
In other news, Thad and I went to the fair with friends Mike and Morgan last night. We ate and ate and ate, and walked around. It was pretty fun. Things started with fried cheese curds, then moved on to a Viking, which was followed up with turkey legs, and finally a fried Snickers. I regret not getting an Indian taco, but have decided that this is the year I will make some fry bread and enjoy an Indian taco in the comfort of my own home.
Here are pictures of the men with their turkey legs.
If you'll excuse me, my butt needs to get rid of some of this fair food.
A) The doctor agrees with the other doctors that this looks like a case of LAM, but there a some things that aren't typical for LAM, for example the asymmetry of the cysts in the lungs, that make him feel that seeing a doctor that has seen more cases of LAM would be a good idea. This doesn't mean it isn't LAM, but in most cases they are symmetrical.
B) There are new cysts, and an existing cyst has gotten quite a bit larger. What is kind of scary about this is that the cyst is pretty close to the lung wall, so we need to be extra observational due to the risk of lung collapse. He didn't feel it was imminent but he did say that avoiding things like flying would be a good idea.
C) We already had an appointment scheduled in Denver for next week, so we are still going to go, but Spike is calling an associate at the National Jewish Medical and Research Center by the name of Dr. Kevin Brown. He is one of the leading doctors working with LAM in the country, and his name was actually given to us by the founder of the LAM Foundation.
So my mom is going to stay here with Elora and the dogs while we make this jaunt down to Denver. We will be staying with friends, and hopfully back before the end of the week. Since all of my scans and breathing tests are up to date the doctors should be able to see all of them in advance.
In other news, Thad and I went to the fair with friends Mike and Morgan last night. We ate and ate and ate, and walked around. It was pretty fun. Things started with fried cheese curds, then moved on to a Viking, which was followed up with turkey legs, and finally a fried Snickers. I regret not getting an Indian taco, but have decided that this is the year I will make some fry bread and enjoy an Indian taco in the comfort of my own home.
Here are pictures of the men with their turkey legs.
If you'll excuse me, my butt needs to get rid of some of this fair food.
Friday, August 10, 2007
Back on the wagon
I'm back on the wagon in a couple different ways. I'm blogging, not regularly yet, but I hope to get better at it.
Also, I'm fully truly totally not smoking anymore. It wasn't as though I started smoking full time again, since I had the baby I've bought maybe 5 packs of cigarettes (but that doesn't count the ones I bummed, tee hee). But I've had some news recently, and it's put me off the cigs permanently.
So the skinny is that I've got some cysts in my lungs. Soooo, this isn't great news in and of itself, but it gets worse. They're getting bigger. Not so big that my breathing is affected or anything, but between March and July they've grown about 5 mm.
According to the ridiculous pulmonologist I saw in April this may be
So, lymphangioleiomyomatosis, or LAM for short, is a rare disorder resulting from proliferation in the lung, kidney, and axial lymphatics of a neoplastic cell having a smooth muscle cell phenotype (LAM cell). Cystic destruction of the lung with progressive pulmonary dysfunction and the presence of abdominal tumors (eg, angiomyolipomas [AML], lymphangioleiomyomas) characterize the disease. Because this condition typically occurs in premenopausal women, involvement of the female hormones in disease pathogenesis is a current hypothesis.
Long story short: they think that hormones cause a women's body, the lungs specifically, to start creating smooth muscle cells, which form cysts. There is no cure, but they have began treating it several different ways.
I'm really lucky that I have a CT scan every year, because if this had continued at the rate that it seems to be going right now without any intervention I may have not known until one of my lungs collapsed.
So we are meeting with another, less ridiculous pulmonologist on Wednesday to get some more info. This appears to be a really rare disease/condition, I think possibly because it is misdiagnosed in some cases.
So, we are hoping to be officially diagnosed without a surgical biopsy, then we'll look into referrals to specialists for this particular... ya know... thing.
If you want more info, please visit the LAM Foundation website
Also, I'm fully truly totally not smoking anymore. It wasn't as though I started smoking full time again, since I had the baby I've bought maybe 5 packs of cigarettes (but that doesn't count the ones I bummed, tee hee). But I've had some news recently, and it's put me off the cigs permanently.
So the skinny is that I've got some cysts in my lungs. Soooo, this isn't great news in and of itself, but it gets worse. They're getting bigger. Not so big that my breathing is affected or anything, but between March and July they've grown about 5 mm.
According to the ridiculous pulmonologist I saw in April this may be
Lymphangioleiomyomatosis.
So, lymphangioleiomyomatosis, or LAM for short, is a rare disorder resulting from proliferation in the lung, kidney, and axial lymphatics of a neoplastic cell having a smooth muscle cell phenotype (LAM cell). Cystic destruction of the lung with progressive pulmonary dysfunction and the presence of abdominal tumors (eg, angiomyolipomas [AML], lymphangioleiomyomas) characterize the disease. Because this condition typically occurs in premenopausal women, involvement of the female hormones in disease pathogenesis is a current hypothesis.
Long story short: they think that hormones cause a women's body, the lungs specifically, to start creating smooth muscle cells, which form cysts. There is no cure, but they have began treating it several different ways.
I'm really lucky that I have a CT scan every year, because if this had continued at the rate that it seems to be going right now without any intervention I may have not known until one of my lungs collapsed.
So we are meeting with another, less ridiculous pulmonologist on Wednesday to get some more info. This appears to be a really rare disease/condition, I think possibly because it is misdiagnosed in some cases.
So, we are hoping to be officially diagnosed without a surgical biopsy, then we'll look into referrals to specialists for this particular... ya know... thing.
If you want more info, please visit the LAM Foundation website
Tuesday, August 7, 2007
A lovely day in Colstrip
This was in Colstrip on 8/2. The little guy on the right is naked, which I found pretty funny, and the other two are Lakota and Lakenzie, my friend Dena's kids. Of course the little monkey in the middle is mine, and Mr. Birthday Suit (aka Hayden) belongs to Jen on the end.
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