Wednesday, December 03, 2008

Curing Analysis Paralysis

On Monday we went to meet with the Neurosurgeon. The doctor came in and asked for my decision. I told him that I had decided to put all my trust in him. I am going to take the chance that surgery is the right answer. Unfortunately I'm going to have to wait a while to get it. The end of January or early February.

We know that the chances of remission with one surgery are not high. Maybe around 40%. But this surgeon promises to stick with me. That we will do this together. That he will advocate for me. I am trusting him.

I am going to also take a chance on the endocrinologist that I did not feel so comfortable with. He at least admitted that he'd never treated anyone with cyclical Cushing's. He told me I would not get well WITHOUT surgery. I have an appointment to tell him that I'm going to reschedule the surgery. I'm not going to any appointments with him alone. I'm nervous but am going to talk to him about it. Maybe that will help.

There are a lot of risks... of course the worst thing that can happen is death. Okay... that's out of the way. Loss of pituitary function is a possibility. This will require hormone replacement, and the fun of trying to find the right doses but is treatable with medications for the most part.

Another risk is the development of a condition called Diabetes Insipidus (DI). This has nothing to do with the diabetes you have heard of. It is caused by damage or injury to the posterior portion of the pituitary and the result is that the kidneys will no longer concentrate urine. Again, there is medication to treat this. And it's usually temporary and often resolves over time.

There are lots of other things that might go wrong... leaks of spinal fluid (CSF), blood clots, bleeding, infection, I'm sure it's a longer list than that. Thing is, that Cushing's itself damages tissues and I think increases the chances of complications by virtue of that.

But for now... I am trying (HA!) not to think about it too much. I have to do this family cruise and get through the holidays.

Having fractured my wrist really is putting a dent in my knitting plans. Obviously this sweater is not going to be done in time to wear on the cruise unless I knit 24/7.

I'm still having a lot of pain. Not from the fracture but on the other side of the wrist. I'm worried that I tore something that is just going to take forever to heal. And be a literal pain in the meantime.

So, that's a lot of words to tell you not much... There's a television interview of my neurosurgeon floating around on the net and if I can figure out a way to embed it I will. OR you can wander over and see it here: Survive The Journey Blog on my friends blog. She's a tech and research maven.

There's probably something else I wanted to post about... but my memory is lousy again these days. Trying to get through the CEU's I need to maintain my RN license has been real work. I don't get upset about it anymore... it just frustrates and scares me. I've GOT to get well.

Wednesday, November 26, 2008

Duck... Duck... GOOSE!

Well, here's a new experience! I've been tagged by a fellow blogger. One I'm not even sure I know, but that's hardly a reason not to play. Right?

So... NeedSleepy wants me to tell you, my imaginary friends, 8 random things about myself. Then I have to find 8 other bloggers to tag (that may be the hard part...)

Here goes nothing...

1. I have been to nearly all 50 states. When I was a kid my parents took us on at least two "cross-country trips". The first when my brother was just starting to walk and then second when he was a little older. I wish I remembered more about the trips, I only remember bits and pieces. Like being allowed to walk barefoot in a rose garden (oh yeah, that was a GREAT idea). Getting a drink from a stream somewhere. Staying at a motel with a playground that had dog poo in the sand. Eating at a restaurant where the menus were attacked to wavy sticks and could be used as fans. And an crocheted orange kangaroo hand puppet that I got as a reward for being good in the car.

2. I entertained the idea of becoming a Franciscan or Carmelite nun briefly while in High School. The idea of spending my life praying for peace appealed to me.

3. I am fascinated by body art. But I hate pain and don't like being on the functional end of needles. I also wonder about people who don't have health insurance but spend hundreds of dollars on ink and body modification.

4. I loved working as an RN in the ER... but my real dream is to work in emerging infectious disease research. People that know me don't believe that I really do not want to work in a situation where I have to interact with different people all the time.

5. From the time I was 2 or 3 until I was around 6 years old my best friend in the world was my next door neighbor, Robin Tomlin. She moved away around then and I cried and cried. I regret that we lost touch. I remember my Mother telling me that I would forget her as I bawled my eyes out when her family drove away for the last time. But I never have.

6. I love my brother. He's my favorite family member. But when we were kids he was totally evil. I used to beg my parents not to make me babysit him. We would fight and he would chase me around the house with butcher knives. Funny thing, he now has culinary arts training and is a great cook. Thank goodness he learned a productive way to wield a knife!

7. When I was in grade school my best friend was a black girl who lived in Watts. We would take turns having sleepovers at each others houses. One time we were walking to the 7-11 near where she lived and a grown woman walked up to me and spit on me for being white. She said horrible things to me. It's an experience I've never forgotten.

8. EIGHT! EIGHT! I FORGOT WHAT EIGHT WAS FOR! ...oh allright... bad Ami, I couldn't resist the femmes reference. But stheriously... I actually discussed, with the nurse that worked at my high school, my decision to have sex for the first time. Don't laugh, she was actually really cool! I had a lot of migraines in high school, and was in her office often to get my prescription Motrin. She asked me if I had a car would I loan my car to this guy for a whole weekend without knowing what he was doing. She asked me if I had researched birth control. She told me that I might regret the decision later when he broke my heart, but what I should really consider was how I would feel about it 20 years later. Would I be embarrassed about who I chose? I'm not, and I'm fond of the memories I have. Thanks Donna!

O.K. Now to Tag 8 others...

Wednesday, November 19, 2008

OOOOOh! LOOK! A chicken!

Time passes, things change.

Found out last night that Raul (see previous post about hat) no longer works at the pharmacy I use. I'm told they caught him stealing drugs. That surprised and saddened both of us. Especially after one night he he even talked to us about the fact that he would never do that. Then again, you can never know what someone is capable of until they do it.

Which brings me to Baby Girl... The Great State of California felt that her mother deserved a second chance (second?? I think we were up to somewhere around 7th chance at this point, but whatever crazy) at starving the child. So after excluding her husband (BG's Daddy) from the process they set up a "voluntary family maintenance plan" which involved Mom staying in a real emergency homeless shelter, rather than the catholic charity flop house she'd been staying at. From what I understood it did not require her to do anything else about the psychological illness that's causing her disordered behaviors.

Somehow the social workers completely missed the fact that what brought this child into the system (this time) was the fact that Mom's behavior had placed the child into such a state of malnutrition that she became chronically ill with a bacterial gastrointestinal infection that she should have been able to get over. Instead it required medical intervention, and that intervention only happened AFTER social services got involved because Mom refused to follow through with prescribed treatment.

As soon as the court social worker handed Mom the paperwork she got ugly with me. I refused to rise to her baiting me, and it culminated with her telling me to "Get the fuck out of my life." Oh-kay sweetheart. But by the way... I still needed to "return" Baby Girl to her. I refused to do it anywhere but at DCFS offices. She was positively spiteful... which was to be expected, I guess.

At any point I don't see a need to rehash it much more. There are conditional happy endings...

The top photo was taken before the hearing, the first day Dad has seen BG in over 3 months. He had just returned from the war in Iraq a few weeks beforehand. The second photo was taken just a few weeks ago. She's happy, growing and thriving. She's looking like a healthy baby and not a sickly infant.

I think one of the biggest milestones for her is that she's really letting Dad know when she's hungry. She was not doing at all when I first started caring for her, and was only beginning to do when she left our home.

How she came to be with Dad isn't the way I would have done things... but I have to admit that I'm okay with the end result. Still, I pray each day for her continued safety.

I also pray each day for her Mom. Who is out in the world doing God Only Knows What with God Only Knows Who. I suspect that she is also plotting a way to get Baby Girl back. Which is the main reason I pray for BG's safety. It's hard when you love someone that is on a path to their own destruction... but even harder when their actions are harming multiple others.

In the meantime my life goes on... The trip to NIH, while it produced some interesting lab work, was basically fruitless. When I returned my neurosurgeon said "Controversial diagnoses will remain controversial." He also warned me against what he called "analysis paralysis". I told him it was too late, I was already there.

After much discussion with family and introspection I have decided to take a chance on surgery. Four years is too long to have my life on hold. Yesterday was my 37th birthday, I want to get back to my life. I want to work. I want to go back to school... I want to have the life that my beloved and I have dreamed of.

On December 1st I will sign consents for surgery and hopefully be given a surgery date. I am expected to go on a family cruise in December for my parents 25th wedding anniversary. So I will likely not be able to have surgery until next year. But expect picture laden posts, from both events!

In the meantime I'm furiously knitting on a Juliet Sweater somewhat like this one that I hope to be able to wear on the cruise.

Molly Dog is doing okay on some new medication. However we're told that her prognosis is between 6 months to two years. We're loving her up lots and watching her carefully. We're more concerned with the quality of her life rather than the quantity.

Tuesday, September 23, 2008

Herding Cats

I haven't posted in a while because I've been trying to create some routine around here now that Baby Girl is staying with us for a while. But, if you didn't guess from the title there, I feel like I'm trying to do the impossible most days.

Still, most days things go pretty smoothly. The kid is fascinated by the birds and the birds, well... they're not so sure about her.
But I figure as long as everyone keeps their distance from each other we'll be fine. And some day, when our hearts have recovered from the empty place that she'll leave once she's moved on to be with her biological family, the parrot will imitate her scream or her laugh and remind us of how much a part of our lives she once was.
In the meantime Molly is my chief childcare assistant. For some reason Baby Girl finds her laughing her ass off funny. Baby Girl plays in the excer-saucer that was gifted to her by a kind stranger and laughs and laughs at Molly watching her.

Molly has been diagnosed with (among other things) congestive heart failure (CHF). I'll try to keep you posted on her progress, we're going to be trying some new meds with her to improve her heart function.

And Dobby... poor Dobby kitty...
he's getting quite good at finding new places to stay out of the way of The Usurper (as we think the pets would call her if they could). He's adjusting, just not as quickly as the dogs.

Me, I wouldn't be managing any of this without the miracle of "better living through chemistry" as we like to call it. I leave for the National Institutes of Health this weekend. I hope that while I'm there they'll figure out exactly what this tumor on my pituitary gland is doing, and point me in the direction of regaining my health.
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Sunday, August 10, 2008

The corn and peas are touching... They're touchingthey'retouching they'retouching!

Is it really blogging if I don't do it regularly?

I let everything get derailed over the last few weeks because of this happy little girl and her mother.

This happy little girl is a festering cesspool of disease... which might be normal except for the fact that, in addition to thrush, what she has is Aeromonas bacteria in her stool and sweet baby jebus only knows if she's got it anywhere else.

Let me rewind a bit and give you the readers digest condensed version... sort of. Right. Like I'd be any good at that.

I've known her Mom off and on over about two years. Little Girl's Mom is a graduate of the foster care system. She's got the emotional maturity of an 11 year old if we're all really lucky. She also probably is suffering with post-partum depression. I can't even say half the shit that's going on because, quite frankly, it's a real big monster ass mess.

Okay. Short version. Stay focused. Shortly after these two came to stay with us my lovely neighbor gave us tickets to see the California Philharmonic at the L.A. Arboretum. That night apparently my sweet Molly Dog coughed so hard she passed out and possibly had a seizure. OHMYHELL. The coughing had just started in the last 24 hours and had apparently gotten very very severe.

We were an hour away from home. Bless my neighbor who gave me the tickets and her sick husband, they took Molly to the emergency hospital where she stayed two nights. No more seizures, but it looks like she picked up a lung infection while at my vet's office the day she had the cardiac ultrasound. I'm still trying not to think about what this cost. She's worth every penny of it.

I'm glad that I did have Little Girl's Mom here because we might not have known what happened, and the outcome could have been much worse. *SHUDDER*

My DH had to leave on a Wednesday to go do Army Reverse, er, I mean Reserve, stuff. He was gone until Sunday. Wednesday night Little Girl's Mom goes out telling me she'll be back shortly after I get home from my Stitch N Bitch meeting. She has Little Girl with her and never calls, and doesn't answer my calls to her cell phone until late the next morning.

When I get up, early for me, to give Molly her anti-coughing medicine I find my beloved agoraphobic Peekaboo kitty is in the bottom of his cage/home, there is bloody goo all over and his breathing is loud, labored and just sounds ragged and awful. His mouth is bloody. He sees me and meows loudly but horribly once, in a way I've never heard in my life and hope to never hear again. He seems to be begging me to help him. It was awful. I don't have words for how awful.

I quickly medicate Molly, throw on clothes and help my Boober into a travel crate. My only thought is to get him to the vet (not even open yet) and end his suffering. He died shortly after I got there. If I had known he would pass so quickly I would have stayed home and just held him.

Little Girl's Mom comes back later in the morning. My landlord actually steps up to the plate and offers a supportive ear in the meantime. Necropsy on Peekaboo shows that he likely had horrible lung cancer. For a long-ass time. I feel even worse. All these years that we thought he had horrible hairballs that he couldn't quite get up he was literally trying to hack up a lung.

This doesn't seem like the shortened version, but trust me, IT IS.

Days later I discover that Little Girl's Mother (whom I'd discovered was drinking heavily and at the very least smoking weed) has brought Marijuana into my home. HOW DARE SHE! In retrospect I should have confiscated it, had the cops come get it, but allowed her to stay her while I quietly contacted Children and Family Services. But DH and I decided that she needed to go, and the sooner the better.

There WAS drama with the police, drama with DCFS and more drama just for drama's sake. It's not over, but she's not welcome back unless she's willing to abide by prision-like rules. We've offered repeatedly to care for the Little Girl while she sorts things out. She has convinced herself that I would kidnap little girl. Right. Whatever, crazy. I am not even going to try to wrap my damaged brain around addict logic.

Both Molly and Merlin now apparently also have Aeromonas, I was sick with it for a few days after she first got here (and am worried that I may need to get my stool cultured too, ew ew ew ew ew ew), and I'm worried about the birds.

But... if you've read all this... you should know you that two good things have happened. First is that after the last few weeks I no longer doubt our ability to become good parents someday. AND... I've been accepted into the Pituitary Tumor Protocol at NIH. More on that good news later.

Friday, July 18, 2008

Love until it hurts, then love a little more.

This is Molly Marie. She is one special little lady. She's probably part border collie, but she's afraid of sheep. She showed a mild interest in herding ducks until one of the ducks charged her. Then she ran away, tail between her legs. Herding is not her "thing", people are.

When we used to take her to the dog park she'd be excited as all heck until she remembered, OMG... there's DOGS at the DOG PARK!

The only time I've ever seen her act aggressive is toward other dogs. Especially any so rude as to smell her! After running away from a dog park toward a busy street we gave up on that idea too.

Molly is Daddy's girl. Not that she dosen't love me too, but she's all about my husband. Has been since we brought her home from the shelter. The contortions she will go through to sneak into his lap are worthy of a master yogi.

Everyone that meets her just swoons over her. She's has such an expressive face, it's hard not to. Maybe someday I'll tell you Molly's whole story. But for today, what we're dealing with is the fact that Molly's heart is no longer able to do its job very well. And that's saying a lot for a dog that has been nothing but a love sponge for as long as I've known her.
Molly is the first dog I've ever cared for that had a sense of humor. She actually tells jokes (although you have to be there to get it). Once she tried to cram herself into the crate that I use for my parrot just to make me laugh.

She's also hugely stubborn, and quite possibly smarter than we are about a number of things.
When asked to do something she doesn't want to, like come into the house when she's not quite done worshiping the sun, she performs the best passive resistance demonstration ever. She goes completely limp and cannot hear you at all. She melts. Of course if you stop paying attention to her she eventually complies.

As you can see Molly is not our only dog. But none of us can imagine our lives without her right now. We're hoping that some medication will make the next years of her life (and we hope that there will be many of them) healthier.

And not just because she's such a good sport about modeling my knitting...

but because of the amazing, personable and clever being she is. Knowing her has enriched me, and I'm not ready for that relationship to end.

I think she still has a thing or two to teach to me, and a joke or two up her doggie sleeve.

Thursday, June 12, 2008

I'm a little tied up right now...

I learned how to crochet when I was in grade school. But, what I've always really wanted to do was knit. Now that I have all this lack of energy and motivation to go places or do things I finally got back on that horse and rode it.

I'm knitting!

Thanks to the help of my local SnB and the wonder of the interwebs and great websites like I'm making progress.

I've also taken to knitting things for random people. I'm weird like that. It took me a bit to find just the right green for my favorite pharmacy technician, but I finally did and knit him a hat. Maybe having a warm head will cheer him up a bit... no, I'm just kidding, his face is stuck like that.

I felt so cool when he said the hat was "sick" (heh, just like me!) and announced that it was his new favorite hat. I rock.

Now for socks... the true reason I want to knit. I've knit a pair of slipper socks for me and a matching pair for Rob using a self patterning yarn. I'm starting a project with actual sock yarn, going to knit a sweater for myself and at some point soon start learning the magic they call "color work".

Things with Count Rugen are more or less on hold in the meantime. Despite having a neurosurgeon and one endocrinologist that think I should evict him surgically . Since I don't have a rock solid diagnosis they can't give me a concrete answer about how they'll know I'm "cured". What with the risks involved and at best there being only a 60% chance of remission from one surgery, I've been looking for more answers before we do that. Right now my primary care doctor and I working on applying for a study at The National Institutes of Health.

Besides, I've got two other endocrinologists that seem to think I'd be better off waiting to get sicker. Isn't that nice of them? On the days that I'm too tired, or my brain is too fried, to even lay-a- bed and knit I look forward to getting sicker to please medical science.