Calling it a night in a few minutes. Trying to out sleep the virus. No voice yet. Wow. This trend of me losing my voice with every virus has got to go. The irony of me losing my voice the morning after my voice doctor told me it was in good shape is not lost on me.
"Life," as Marvin the depressed robot says, "loathe it or ignore it. You can't like it." May you like your 2012. Thanks for making this blog worth doing.
Cheers!
A little blog about Life, the Universe, and Everything.
Saturday, December 31, 2011
The end of a very long year
I've already ran the highlights of the year down for you. But I'm still on about it. Probably 'cause I'm sick. I shouldn't whine so much, I'm almost never sick, as in sick with a virus. My health issues are typically chronic in nature.
But, being sick is clearly insult to injury! Like everybody else, we have a big list of commitments that are now having to be adjusted or cancelled. I dislike that intensely! And feeling really bad is no great shakes, either.
We realized at Christmas our oven was dreadfully overdue to be cleaned (self cleaning cycle). So, since I could not go along to a New Year's lunch at my dad's, I told Mark (Ok, I typed to Mark as I'm voiceless-again) I'd run the cycle while they were gone. Big mistake! The toxic smoke and smell are not improving my breathing and coughing. I think this virus is dampening some of my brain cells.
I think the worst of the smoke is over, but yuck, it smells awful in there! One of my resolutions is to clean it more often. I've had an idea for awhile, a perpetual calendar, for the house. Make a list of those odd chores one never thinks about and should be done (draining the water heater, washing the windows, clearly cleaning the oven), and divide them by 12. Thankfully, my husband is in on this, as he's the one that has to do all the muscle work around here.
I hope I'm not boring you! I'm trying to keep my mind off the acrid fumes and my upper respiratory ailment. :)
Could it be coincidence I woke up sick the morning after I pledged to make an effort to be more positive? I think not. It's hard to feel positive when one's sick and is having to let people down by canceling commitments--and worrying about pending travel (Orcas Island Monday), and the preparation for such.
With my chronic illness issue, I do work hard. And I accomplish a lot. I also do tend to take things harder than a "normal" would, especially interpersonal things. "Normal" people tend to be busier, have a broader life. I think of mine as rather small, but deep.
These things make friendship often hard for me. It's difficult to find people who understand. I mean really understand. I treasure the ones who do. I'm grateful to God for bringing some people into my life who "get" me, the good, the bad, and the ugly. In moments of frustration, I wonder why anybody would bother. I come with a lot of baggage.
But, before I ramble endlessly on a toxic fume jag, I'll end with something heavy. Do not read ahead if you're not up for heavy. .... .....
You have been warned. I want to feel less sorry for myself. No, I'm not bad for that, but sometimes...I am. I think it's not fair I have to struggle so much with pain, illness, and weight. It doesn't seem right to me! But, I also know I have so much to be grateful for, and I need to keep my mind on that.
An acquaintance told me something recently, something that's both stuck with me, and haunted me a bit. Her little niece died a few years ago. Seven years old, and she died of cancer. The woman I know was telling me of her own guilt, should she have done more? Should she have taken her daughter over there to see her cousin more? Stuff like that.
She said the little girl died in September, and that she wanted Christmas one more time, so her parents decorated the house for Christmas for her right before she died. In the days leading up to her death, besides one more Christmas, she just wanted to go shopping one more time. So her Daddy carried her withered frame through Wal-Mart so she could look at the aisles.
That is real grief. That is real tragedy. And who the hell am I to whine about physical pain that's not fatal? Yes, it wears me down, and it's hard. Sometimes my emotions are effected in a weird way, a way I can tell is physiological. And when that happens, I try not to take myself too seriously.
But compared to the grief of losing a child, a husband, a wife, my problems are trifling. Please forgive me for dwelling on them. And thank you for reading. May we all see beauty and good in the year to come. Happy New Year!
But, being sick is clearly insult to injury! Like everybody else, we have a big list of commitments that are now having to be adjusted or cancelled. I dislike that intensely! And feeling really bad is no great shakes, either.
We realized at Christmas our oven was dreadfully overdue to be cleaned (self cleaning cycle). So, since I could not go along to a New Year's lunch at my dad's, I told Mark (Ok, I typed to Mark as I'm voiceless-again) I'd run the cycle while they were gone. Big mistake! The toxic smoke and smell are not improving my breathing and coughing. I think this virus is dampening some of my brain cells.
I think the worst of the smoke is over, but yuck, it smells awful in there! One of my resolutions is to clean it more often. I've had an idea for awhile, a perpetual calendar, for the house. Make a list of those odd chores one never thinks about and should be done (draining the water heater, washing the windows, clearly cleaning the oven), and divide them by 12. Thankfully, my husband is in on this, as he's the one that has to do all the muscle work around here.
I hope I'm not boring you! I'm trying to keep my mind off the acrid fumes and my upper respiratory ailment. :)
Could it be coincidence I woke up sick the morning after I pledged to make an effort to be more positive? I think not. It's hard to feel positive when one's sick and is having to let people down by canceling commitments--and worrying about pending travel (Orcas Island Monday), and the preparation for such.
With my chronic illness issue, I do work hard. And I accomplish a lot. I also do tend to take things harder than a "normal" would, especially interpersonal things. "Normal" people tend to be busier, have a broader life. I think of mine as rather small, but deep.
These things make friendship often hard for me. It's difficult to find people who understand. I mean really understand. I treasure the ones who do. I'm grateful to God for bringing some people into my life who "get" me, the good, the bad, and the ugly. In moments of frustration, I wonder why anybody would bother. I come with a lot of baggage.
But, before I ramble endlessly on a toxic fume jag, I'll end with something heavy. Do not read ahead if you're not up for heavy. .... .....
You have been warned. I want to feel less sorry for myself. No, I'm not bad for that, but sometimes...I am. I think it's not fair I have to struggle so much with pain, illness, and weight. It doesn't seem right to me! But, I also know I have so much to be grateful for, and I need to keep my mind on that.
An acquaintance told me something recently, something that's both stuck with me, and haunted me a bit. Her little niece died a few years ago. Seven years old, and she died of cancer. The woman I know was telling me of her own guilt, should she have done more? Should she have taken her daughter over there to see her cousin more? Stuff like that.
She said the little girl died in September, and that she wanted Christmas one more time, so her parents decorated the house for Christmas for her right before she died. In the days leading up to her death, besides one more Christmas, she just wanted to go shopping one more time. So her Daddy carried her withered frame through Wal-Mart so she could look at the aisles.
That is real grief. That is real tragedy. And who the hell am I to whine about physical pain that's not fatal? Yes, it wears me down, and it's hard. Sometimes my emotions are effected in a weird way, a way I can tell is physiological. And when that happens, I try not to take myself too seriously.
But compared to the grief of losing a child, a husband, a wife, my problems are trifling. Please forgive me for dwelling on them. And thank you for reading. May we all see beauty and good in the year to come. Happy New Year!
Friday, December 30, 2011
Going to bed
My "sick" feeling is better, but even my croak has gone missing. I'm vacillating between being calm, and figuring this will go away soon, to OMGOMGOMG! Three months with no voice has left me very gun shy. Sort of like after my pregnancy where I had a migraine for seven months continuously. It was years before I'd not freak out at the slightest headache.
Well....
...at least my extra high pain level and feeling vaguely bummed makes sense now! I was afflicted with a virus.
Boy, does this stink. We had to cancel our once a year visit with out of state relatives (they come up at Christmas each year). :( And I was supposed to lead the service at church Sunday--but I have no voice. Totally trying not to freak out about that. It's unlikely it'll be gone for weeks or months again, but what if...?
I feel super bad, too. I'll spare you the laundry list, but I feel pretty lousy from head to foot. And now Mark's leaving for work!
Boy, does this stink. We had to cancel our once a year visit with out of state relatives (they come up at Christmas each year). :( And I was supposed to lead the service at church Sunday--but I have no voice. Totally trying not to freak out about that. It's unlikely it'll be gone for weeks or months again, but what if...?
I feel super bad, too. I'll spare you the laundry list, but I feel pretty lousy from head to foot. And now Mark's leaving for work!
Thursday, December 29, 2011
2012: The Year of Enough
Drop the last year into the silent limbo of the past. Let it go, for it was imperfect, and thank God that it can go. ~Brooks Atkinson
The end of 2011. Goodbye! It wasn’t 2009 bad, but it was not one of the better ones. I weigh 40 pounds more than I did a year ago. That is impressive in itself, but you much figure in I lost over 20 pounds more than that before the massive gain. So I lost 25 or so, gained 60. And I gained the 60 over the last 6 months. That is not normal. Nor is it healthy. But it is heartbreaking and frightening.
I’ve been pursuing more medical testing. I just got the last bit from Dr. Nice done. I see him in a month and we’ll go over all the results. Prior to that, the same day, I have a cortisol challenge test, which promises to be unpleasant. But if it tells us what we need to know, it’ll be worth it.
Right now I’m in a lot of pain. Yesterday and today we were in Seattle getting tests. One test to wrap up Dr. Nice’s orders, and a follow up about my voice. It seems there’s some lasting damage from the virus, which he says is odd in someone my age. Welcome to my life. But, I can talk. That has to be enough.
More back surgery this past year. Yeah, another unsuccessful back surgery. Losing my voice for three months. The 80 pound weight merry-go-round from hell. I just wanna be normal!
But it’s not all been bad, of course. My husband graduated. Our daughter is a daily sense of joy and wonder for us. There’s music, and laughter, and love. There’s a hand up when you’re face down on the ground thinking, I can’t do this. It seems the hard, the painful, and the black accentuates the lovely, the good, and the rainbows. Sometimes it’s hard to see it through the pain. But it’s there.
I hope to make some changes this next year. I am trying to be cognizant of the fact most of my plans don’t work out, as I can’t control what my body does. I did all the hard work to lose that #105 pounds. And I can say from my heart it’s not my fault what happened after. Same with exercise goals, etc. I can only do what I can do. And I try REALLY hard. But it’s so often not enough.
I guess that’s part of my goals for the new year, keep working hard, but don’t let my happiness and sense of satisfaction be wholly tied up in the outcome. There’s so much that *could* happen in 2012—maybe I get a diagnosis and the weight and other serious problems go away?! Maybe my back gets better? Maybe both and by the end of next year, a second child? (Ok, don’t laugh. I know I’m 42 and change but I can still put asses in the seats, baby! Maybe. Ok, you can laugh. I am.)
But, as much as it makes me sad, probably not. Probably none of it. But like I said, I can only do what I do now, which is try really hard. That has to be enough.
There are a couple of relationships in my life that make me sad. I feel like Charlie Brown to their Lucy with the football. But again, it leads to the same conclusion: me trying really hard isn’t enough. I’ve never been good at letting go. Frankly, I suck at it.
So, what to do then? Write out my goals and dreams for 2012, and then let them go. One of my main goals is to, as an act of will, focus on the good. There’s so much good. As I type this, faces and images drift lazily through my mind. With all my damaged brokenness, pain, and…special needs…people love me! And I love people—with my whole heart. That has to be enough.
Thank you God, for the people. Ok, 2012…bring it!
The end of 2011. Goodbye! It wasn’t 2009 bad, but it was not one of the better ones. I weigh 40 pounds more than I did a year ago. That is impressive in itself, but you much figure in I lost over 20 pounds more than that before the massive gain. So I lost 25 or so, gained 60. And I gained the 60 over the last 6 months. That is not normal. Nor is it healthy. But it is heartbreaking and frightening.
I’ve been pursuing more medical testing. I just got the last bit from Dr. Nice done. I see him in a month and we’ll go over all the results. Prior to that, the same day, I have a cortisol challenge test, which promises to be unpleasant. But if it tells us what we need to know, it’ll be worth it.
Right now I’m in a lot of pain. Yesterday and today we were in Seattle getting tests. One test to wrap up Dr. Nice’s orders, and a follow up about my voice. It seems there’s some lasting damage from the virus, which he says is odd in someone my age. Welcome to my life. But, I can talk. That has to be enough.
More back surgery this past year. Yeah, another unsuccessful back surgery. Losing my voice for three months. The 80 pound weight merry-go-round from hell. I just wanna be normal!
But it’s not all been bad, of course. My husband graduated. Our daughter is a daily sense of joy and wonder for us. There’s music, and laughter, and love. There’s a hand up when you’re face down on the ground thinking, I can’t do this. It seems the hard, the painful, and the black accentuates the lovely, the good, and the rainbows. Sometimes it’s hard to see it through the pain. But it’s there.
I hope to make some changes this next year. I am trying to be cognizant of the fact most of my plans don’t work out, as I can’t control what my body does. I did all the hard work to lose that #105 pounds. And I can say from my heart it’s not my fault what happened after. Same with exercise goals, etc. I can only do what I can do. And I try REALLY hard. But it’s so often not enough.
I guess that’s part of my goals for the new year, keep working hard, but don’t let my happiness and sense of satisfaction be wholly tied up in the outcome. There’s so much that *could* happen in 2012—maybe I get a diagnosis and the weight and other serious problems go away?! Maybe my back gets better? Maybe both and by the end of next year, a second child? (Ok, don’t laugh. I know I’m 42 and change but I can still put asses in the seats, baby! Maybe. Ok, you can laugh. I am.)
But, as much as it makes me sad, probably not. Probably none of it. But like I said, I can only do what I do now, which is try really hard. That has to be enough.
There are a couple of relationships in my life that make me sad. I feel like Charlie Brown to their Lucy with the football. But again, it leads to the same conclusion: me trying really hard isn’t enough. I’ve never been good at letting go. Frankly, I suck at it.
So, what to do then? Write out my goals and dreams for 2012, and then let them go. One of my main goals is to, as an act of will, focus on the good. There’s so much good. As I type this, faces and images drift lazily through my mind. With all my damaged brokenness, pain, and…special needs…people love me! And I love people—with my whole heart. That has to be enough.
Thank you God, for the people. Ok, 2012…bring it!
Monday, December 26, 2011
Tuesday, December 20, 2011
Feeling empowered
I called and spoke to the patient representative at Dr. AH's hospital. I doubt anything will come of it, but I take comfort knowing it goes into his file. And if enough people he victimizes come forward, maybe something will happen. But, I've done what I could to try and stop him from treating other people badly, so there you have it.
One more thing
I was gaining 2# per week eating NO scarbs (simple carbs). Screw that. Right now, I'm letting myself enjoy some *(^^^ chocolate. I'm making sure I curb the urge to eat as anesthesia, 'cause dude, it doesn't help.
But I'm trying to be a little kinder to myself right now. We won't know anything for a month (at least) about the cortisol problem investigation. So, I figure a little chocolate from sweet friends isn't a sin.
But I'm trying to be a little kinder to myself right now. We won't know anything for a month (at least) about the cortisol problem investigation. So, I figure a little chocolate from sweet friends isn't a sin.
1X: You again....
....and I'm NOT happy to see you! I was happy to be in an off the rack XL. And I had gotten rid of most of my 1Xes. Drat! Most of my smaller clothes still fit, albeit not as well. But, I did cave and buy a few new pieces. Penneys had a kickin' sale, and I had a coupon. Even so, I so believed the hcg "cured" me.
It did not.
It's going to be at least a month (I think) before I get the test results. I am now officially emotionally wed to the idea of it being a cortisol problem. It just seems to fit so well! Whatever *it* is, I'm not enjoying the odd symptoms that sometimes accompany the insane weight gain. For one, I randomly shake. It's not super obvious, but I feel it. It feels like the chills. And, occasionally, I burst out in weird sweat (TMI?). It's not comfortable. And it's not menopausal stuff. The numbers and cycle regularity don't support it.
I had two great visits with girlfriends today, one new friend, and one friend I've had for awhile. It totally cheered me up. Girl time is the best. :)
It did not.
It's going to be at least a month (I think) before I get the test results. I am now officially emotionally wed to the idea of it being a cortisol problem. It just seems to fit so well! Whatever *it* is, I'm not enjoying the odd symptoms that sometimes accompany the insane weight gain. For one, I randomly shake. It's not super obvious, but I feel it. It feels like the chills. And, occasionally, I burst out in weird sweat (TMI?). It's not comfortable. And it's not menopausal stuff. The numbers and cycle regularity don't support it.
I had two great visits with girlfriends today, one new friend, and one friend I've had for awhile. It totally cheered me up. Girl time is the best. :)
Friday, December 16, 2011
What is up?
Another person I barely know decided to offer "help" (say stupid things) and "advice" (say stupid things) about health issues. Crikey! And it's not that I'm asking for advice and being annoyed by it. I'M NOT ASKING! Thankfully most healthy people don't feel the need to lecture people with chronic health issues about it, but the ones who do.... I think this is where having a real, concrete diagnosis can be helpful. People aren't going to tell somebody with something like lupus (as a random example) to just buck up and put on a happy face, that their attitude is "so important."
I'll tell you, my attitude would be a LOT better if people would show some compassion and common sense before they launch into this stuff. This is largely why I consider my FRIENDS (capitals on purpose) to be few and far between. Being so...odd...does by its nature set me apart. So if you're my friend, consider yourself special, and thank you.
Argh! Ok, shake it off... Anyway, I finished and sent in my testing. I have a couple of more tests over the next month. One is a simple lab test, but one our simple lab does not do. So that one will have to happen when we're in Seattle for my vocal cord follow up in a couple of weeks. Kind of a pain, as we'll have to travel further away, back into the No Man's Land that is Redmond for us, but at least it's by a Panera Bread.
The other one is probably the definitive test for what I've been pursuing, what I think is a probable adrenal disorder. That one I have to take medication every six hours (religiously) for a couple of days, then go to the lab in Seattle (at 8:00 a.m., mind you) where they'll do...something...for an hour (Don't really want to know at this point, I'm worried enough.). While I'm over there for that one, we'll also go see Dr. Nice, for by that point all my exotic testing will be done and processed. Then I suppose we'll get some answers? I just hope they're answers that explain not only my fatigue and other weird things, but for me, right up there with the back pain is my weight (Ah, I'd pretty much have to get around to that on this blog, eh?).
I cancelled my hcg round for January. That is not compatible with the other lab testing. And I feel peace about it--not to be confused with happy about it. When I stopped by the doctor's office to talk to the receptionist and pick up my vitamins, I saw the hcg doc. I was not happy to see her. I still resent what I feel is mishandling of my case, and being overcharged. The doc she took over for did a much better job.
But resentment never helped anyone. It's like drinking poison and waiting for the other person to die. She tried, I'm sure. It's just hard to be the one percent of the one percent.
I'll tell you, my attitude would be a LOT better if people would show some compassion and common sense before they launch into this stuff. This is largely why I consider my FRIENDS (capitals on purpose) to be few and far between. Being so...odd...does by its nature set me apart. So if you're my friend, consider yourself special, and thank you.
Argh! Ok, shake it off... Anyway, I finished and sent in my testing. I have a couple of more tests over the next month. One is a simple lab test, but one our simple lab does not do. So that one will have to happen when we're in Seattle for my vocal cord follow up in a couple of weeks. Kind of a pain, as we'll have to travel further away, back into the No Man's Land that is Redmond for us, but at least it's by a Panera Bread.
The other one is probably the definitive test for what I've been pursuing, what I think is a probable adrenal disorder. That one I have to take medication every six hours (religiously) for a couple of days, then go to the lab in Seattle (at 8:00 a.m., mind you) where they'll do...something...for an hour (Don't really want to know at this point, I'm worried enough.). While I'm over there for that one, we'll also go see Dr. Nice, for by that point all my exotic testing will be done and processed. Then I suppose we'll get some answers? I just hope they're answers that explain not only my fatigue and other weird things, but for me, right up there with the back pain is my weight (Ah, I'd pretty much have to get around to that on this blog, eh?).
I cancelled my hcg round for January. That is not compatible with the other lab testing. And I feel peace about it--not to be confused with happy about it. When I stopped by the doctor's office to talk to the receptionist and pick up my vitamins, I saw the hcg doc. I was not happy to see her. I still resent what I feel is mishandling of my case, and being overcharged. The doc she took over for did a much better job.
But resentment never helped anyone. It's like drinking poison and waiting for the other person to die. She tried, I'm sure. It's just hard to be the one percent of the one percent.
Thursday, December 15, 2011
I'm released from tyranny (from now)
Now that the peeing in the hat is over, I can get back to a life of urination freedom we Americans take for granted.
Wednesday, December 14, 2011
The difficulty of invisible illness...
...is that nobody sees it. And, humans are prone to discount what they can't see.
So last night I was standing by this woman I've known for years (not known well, but known consistently as our daughters have danced together since they were four). She knows about my back pain, and has recently shown an interest as she's had back pain for a couple of weeks (it's improving).
So she asks me if I've tried pain management mind techniques, etc. (Dude, I've tried it all.) I mentioned I'm not a huge believer in it. She said, WHY? I'm SUCH a believer in the mind-body connection...it's soooo valuable... If one can just adjust their mind...blah blah blah... I've had the lecture before. And while it's hurtful (and ignorant), I've learned just to shut up. Trying to justify and/or explain myself does no good; it just digs a bigger chasm between me and whomever is preaching to me. They don't understand. They apparently can't understand: the healthy rarely can.
But, this one had a better conversation ender than most of this type. While I stood there stoically, watching our kids finish up their class, she added, Then again, if somebody said that to me two weeks ago when I was REALLY hurting, I would have wanted to sock them. I smiled benignly at her and said, That's why my arms are crossed.
So last night I was standing by this woman I've known for years (not known well, but known consistently as our daughters have danced together since they were four). She knows about my back pain, and has recently shown an interest as she's had back pain for a couple of weeks (it's improving).
So she asks me if I've tried pain management mind techniques, etc. (Dude, I've tried it all.) I mentioned I'm not a huge believer in it. She said, WHY? I'm SUCH a believer in the mind-body connection...it's soooo valuable... If one can just adjust their mind...blah blah blah... I've had the lecture before. And while it's hurtful (and ignorant), I've learned just to shut up. Trying to justify and/or explain myself does no good; it just digs a bigger chasm between me and whomever is preaching to me. They don't understand. They apparently can't understand: the healthy rarely can.
But, this one had a better conversation ender than most of this type. While I stood there stoically, watching our kids finish up their class, she added, Then again, if somebody said that to me two weeks ago when I was REALLY hurting, I would have wanted to sock them. I smiled benignly at her and said, That's why my arms are crossed.
Tuesday, December 13, 2011
Winding down
Anna and I are in the last week of school 'til January. Yay! It's week 14 and we're ready to be done. We're doing a short week, so that's a good thing. We have lots of Christmas puttering to attend to, as well as reading by the fire, sipping cups of tea or cider.
Last night during her dance class, I walked through town to the ice cream store to pick up the gift cards for the teen/tween helpers who work at our church nursery. That's the last time I'll be doing that! My two terms are up, and like Queen Amidala, I'm relieved.
It'll be kind of weird and a bit sad to not be in charge of it anymore. It's been over four years (my predecessor gave it over to me some time before her term ended). I've put a lot of blood, sweat, and tears into the position. But, it will be nice to have somebody else stress over the nursery scheduling and staffing!
My final board meeting is tomorrow night (thought it was next week--ack!). The board is filled with good people whom I enjoy spending time with, but again, nice to have one big thing off my plate. The last four years I've done this A LOT has happened. I lost two babies, one mother, and 100 pounds (and gained back 50). I have educated my academically gifted daughter and helped my husband finish graduate school. I'M TIRED. And, I have more uphill, rugged road ahead of me as I try to find out and fix what's wrong with me physically.
It's time to move on and let somebody else paddle the canoe at church for awhile. But, I'm not giving it all up. There's still VBS. :)
Last night during her dance class, I walked through town to the ice cream store to pick up the gift cards for the teen/tween helpers who work at our church nursery. That's the last time I'll be doing that! My two terms are up, and like Queen Amidala, I'm relieved.
It'll be kind of weird and a bit sad to not be in charge of it anymore. It's been over four years (my predecessor gave it over to me some time before her term ended). I've put a lot of blood, sweat, and tears into the position. But, it will be nice to have somebody else stress over the nursery scheduling and staffing!
My final board meeting is tomorrow night (thought it was next week--ack!). The board is filled with good people whom I enjoy spending time with, but again, nice to have one big thing off my plate. The last four years I've done this A LOT has happened. I lost two babies, one mother, and 100 pounds (and gained back 50). I have educated my academically gifted daughter and helped my husband finish graduate school. I'M TIRED. And, I have more uphill, rugged road ahead of me as I try to find out and fix what's wrong with me physically.
It's time to move on and let somebody else paddle the canoe at church for awhile. But, I'm not giving it all up. There's still VBS. :)
Hello Germany and Russia (and other stuff)
Distant kinsmen--I salute you! :} Thanks for reading.
Well, I heard from the New Hotness doctor's office yesterday afternoon. Since the current doctor is abdicating in a week, they just can't fit me in this calendar year (bummer). But I have an expensive--I mean--extensive work up scheduled in January. :( Totally sucks for our deductible. But we can't see any other way but forward. I just hope it SHOWS something.
I also started the complicated testing from Nice Doctor. Having to saturate a huge cotton ball under my tongue makes me gag just thinking about it. I'm just worried when they process the test, they'll find I'm not fully human and the jig will be up.
Well, I heard from the New Hotness doctor's office yesterday afternoon. Since the current doctor is abdicating in a week, they just can't fit me in this calendar year (bummer). But I have an expensive--I mean--extensive work up scheduled in January. :( Totally sucks for our deductible. But we can't see any other way but forward. I just hope it SHOWS something.
I also started the complicated testing from Nice Doctor. Having to saturate a huge cotton ball under my tongue makes me gag just thinking about it. I'm just worried when they process the test, they'll find I'm not fully human and the jig will be up.
Monday, December 12, 2011
Phone call
Well, earlier today, as we were getting ready to head out to Anna's lesson, my local doctor called. She received a report from Dr. AH and wanted to know if I wanted her to FW it to the specialist I'm trying to get in to see.
I immediately figured not, but asked her what it said. That was probably a tactical error on my part, as he was just as much as an AH in print as in person. He even went so far as to insult me to my doctor. Why? Because he's an AH. That's why.
But, it really upset me. I clearly remember now why I've given up on searching for the root cause behind my health issues: dead ends. Usually I haven't had to endure doctors who were vicious and nasty (just ran out of ideas and ran me out the door). That's just icing on the cake, I guess.
It's so discouraging. When even the doctor doesn't believe I eat myself into this corner, what can I do? They seem to so easily dismiss all the other symptoms, and pretend they don't hear me when I tell them I gain weight at an unholy rate, and have had many such cycles. It's just easier to ignore my concerns until I go away.
But after talking to her today, I felt that old feeling of hopelessness. That they won't figure out what's wrong with me until they're doing my autopsy.
I immediately figured not, but asked her what it said. That was probably a tactical error on my part, as he was just as much as an AH in print as in person. He even went so far as to insult me to my doctor. Why? Because he's an AH. That's why.
But, it really upset me. I clearly remember now why I've given up on searching for the root cause behind my health issues: dead ends. Usually I haven't had to endure doctors who were vicious and nasty (just ran out of ideas and ran me out the door). That's just icing on the cake, I guess.
It's so discouraging. When even the doctor doesn't believe I eat myself into this corner, what can I do? They seem to so easily dismiss all the other symptoms, and pretend they don't hear me when I tell them I gain weight at an unholy rate, and have had many such cycles. It's just easier to ignore my concerns until I go away.
But after talking to her today, I felt that old feeling of hopelessness. That they won't figure out what's wrong with me until they're doing my autopsy.
Wednesday, December 7, 2011
More progress (or what looks like progress)
A friend suggested I "try the door" one more time about the specialist in Seattle (the one who's leaving, not Dr. AH). So, I called and said I know he's leaving, but he said the most important test is done at the lab--and could he order that, and I go over the results later with one of his colleagues? I explained my insurance situation, that we reached the Out of Pocket and that'll be good 'til the end of the year. So if I could have the test at the lab at the end of the year, I'd be sooooo grateful.
The manservant said he can't order the test himself, but he's very happy to ask the doctor to make an exception for me (they typically have you do the test, have the consult on the same day), and he'll let me know. Thanks S1, always a good idea to try the door (I tend to beat my head on it, but trying it gently is better). :)
So, we'll see. It's a rotten time of year to be sprinting for this kind of thing, but I didn't get the tip from E about the adrenal dysfunction 'til recently. And I've been busy not recovering from back surgery as well as busy recovering from laryngitis from hell. And doing Anna's school. And getting fatter exponentially has taken a lot of my attention. And, well, my dad just had surgery. And...well, you get the point! :) You know: life.
Hey, let me post a pretty picture for you. While this blog started as a combination journal/update vehicle for my friends while I did the hcg diet, it's rather turned into a log of my ongoing health journey. Is it depressing, do you think? Should I jazz it up with some happy stuff? I tried two blogs for awhile, one health related, and one hcg related, but that doesn't work for me. I'm a wholly integrated Sandra; I don't compartmentalize myself. It's not how I roll. ;)
Ok, so I'm going to post something happy. Because despite it all, I have joy. There's so much good in life, and I have people in my life I love.
Tuesday, December 6, 2011
I have a plan
But, I always have a plan. Hello, my name is Sandra, and I'm a planaholic (Hello, Sandra). I can't help it. It's how I roll. It may be I'm just anal retentive and fussy (but make a damn fine administrator), but I think it's in large part how I cope with my physical disabilities.
So, the plan is to see what's behind Door #1 (Bellevue doc). I'm going to work out those tests and take them as soon as possible. One of them I can't do locally; I have to do it in Seattle. But, we'll be in Seattle at the end of the month; I have it on my calendar figuring out and implementing the other tests prior to.
My dad had surgery today. It was supposed to be outpatient, but there he stays at the hospital an hour away (He's ok, but got out of surgery later than anticipated.). It could be dicey if they let him out late tomorrow as Mark has to be back here at work by 3. It's times like this my anger at my back turns inward to self loathing. I should be able to drive him to and from the hospital. He's doing ok, and I'm sure it'll all work out. But, see above. I wish it was me who was caring for him at this time.
Ok, so the plan continues...as of now I plan on doing one more hcg cycle in January and seeing/hoping/trying/praying for it to stabilize. It'll be 10 months from last shot to first shot, plenty of time for any residual immunity to have dissipated.
Even if I max out my weight loss on the cycle, I'll still be higher than I was (by quite a bit) at the end of the last cycle. That's not a happy thought. But, I'd much rather be there than here. My stomach has taken on anthropomorphic qualities at this point.
So, the plan is to see what's behind Door #1 (Bellevue doc). I'm going to work out those tests and take them as soon as possible. One of them I can't do locally; I have to do it in Seattle. But, we'll be in Seattle at the end of the month; I have it on my calendar figuring out and implementing the other tests prior to.
My dad had surgery today. It was supposed to be outpatient, but there he stays at the hospital an hour away (He's ok, but got out of surgery later than anticipated.). It could be dicey if they let him out late tomorrow as Mark has to be back here at work by 3. It's times like this my anger at my back turns inward to self loathing. I should be able to drive him to and from the hospital. He's doing ok, and I'm sure it'll all work out. But, see above. I wish it was me who was caring for him at this time.
Ok, so the plan continues...as of now I plan on doing one more hcg cycle in January and seeing/hoping/trying/praying for it to stabilize. It'll be 10 months from last shot to first shot, plenty of time for any residual immunity to have dissipated.
Even if I max out my weight loss on the cycle, I'll still be higher than I was (by quite a bit) at the end of the last cycle. That's not a happy thought. But, I'd much rather be there than here. My stomach has taken on anthropomorphic qualities at this point.
Blue Tuesday
I still feel sad about things not working out with the doctor yesterday. I also feel bad because I saw a picture of me over the summer, and I saw a new picture of me. Wow! What a gain. It's just not right (and technically not possible).
Dr. AH last week told me people CAN'T gain that fast. Uhm...dude? Clearly, some of us can. THAT'S WHY I WAS THERE!
I think I'm a little fixated. I wake up worried and unhappy about it. I go to bed worried and unhappy about it. I'm scared of where this is going. I'm mad that all my horrific weight loss work is going up in smoke (when I don't deserve it). I just feel like a lost loser, that nothing I do is right and I'm heading off a cliff.
Dr. AH last week told me people CAN'T gain that fast. Uhm...dude? Clearly, some of us can. THAT'S WHY I WAS THERE!
I think I'm a little fixated. I wake up worried and unhappy about it. I go to bed worried and unhappy about it. I'm scared of where this is going. I'm mad that all my horrific weight loss work is going up in smoke (when I don't deserve it). I just feel like a lost loser, that nothing I do is right and I'm heading off a cliff.
Monday, December 5, 2011
It went a lot differently in my head
So today was the much anticipated phone consultation, that *was* to lead to tests being ordered and taken, and me meeting with the doctor, answers in hand, before the end of the calendar year. It didn't quite go like that.
This morning, the doctor's manservant wanted my recent lab work, so the doctor could review it before the consult. So far, so good. I was nervous and excited all day. I looked at the Swedish website for his department and the condition I think I might have. One of the major symptoms is severe low back pain. HELLO! I don't show all the symptoms (I gain around the middle, but don't present like Big Bird), but many of the big ones, I do. And have for many years. It could finally be explained--and treated! He was to call between 1 and 3.
At 2:30, he called. The doctor was quite pleasant, for the two or three minutes I spoke to him. He said, "Did anybody tell you, I'll be leaving the hospital in three weeks?" Uhm, no. They didn't mention that.
He's going into "industry" and isn't even seeing any more patients for the rest of the year. But, he said I can get a referral to his department and somebody can see me, but he can't even guess who. And, there's no way it can happen before the end of the year. The tests they'd do are extremely expensive. This year, we met our out of pocket after my back surgery. Starting in January, that all goes away.
I can't fathom why I wasn't told this, why he'd want my lab tests (we discussed nothing of my health status), or why he made a phone consultation with me. Needless to say, it was a blow.
I'm still not fully recovered from Dr. A*****le from last week. Now this. I feel pretty bummed about the whole thing. I keep trying to tell myself that maybe this is how it's supposed to be, that of the three doctors, only one shows any promise, and to walk in that direction, but these guys are endocrinologists--supposedly the experts.
But apparently, not for me.
This morning, the doctor's manservant wanted my recent lab work, so the doctor could review it before the consult. So far, so good. I was nervous and excited all day. I looked at the Swedish website for his department and the condition I think I might have. One of the major symptoms is severe low back pain. HELLO! I don't show all the symptoms (I gain around the middle, but don't present like Big Bird), but many of the big ones, I do. And have for many years. It could finally be explained--and treated! He was to call between 1 and 3.
At 2:30, he called. The doctor was quite pleasant, for the two or three minutes I spoke to him. He said, "Did anybody tell you, I'll be leaving the hospital in three weeks?" Uhm, no. They didn't mention that.
He's going into "industry" and isn't even seeing any more patients for the rest of the year. But, he said I can get a referral to his department and somebody can see me, but he can't even guess who. And, there's no way it can happen before the end of the year. The tests they'd do are extremely expensive. This year, we met our out of pocket after my back surgery. Starting in January, that all goes away.
I can't fathom why I wasn't told this, why he'd want my lab tests (we discussed nothing of my health status), or why he made a phone consultation with me. Needless to say, it was a blow.
I'm still not fully recovered from Dr. A*****le from last week. Now this. I feel pretty bummed about the whole thing. I keep trying to tell myself that maybe this is how it's supposed to be, that of the three doctors, only one shows any promise, and to walk in that direction, but these guys are endocrinologists--supposedly the experts.
But apparently, not for me.
Sunday, December 4, 2011
Tomorrow
Tomorrow is my phone consultation with the other endocrinologist (the specialist). No matter what he says or does, he could hardly be worse than the other guy. :(
I've been thinking over and looking at the tests Bellevue Doc suggested. I think I'm going to do them. No, I don't really have the $, but that is life. If I can find out what my root health issue is, and get it worked on, it can only be for the good.
Am I right?
I've been thinking over and looking at the tests Bellevue Doc suggested. I think I'm going to do them. No, I don't really have the $, but that is life. If I can find out what my root health issue is, and get it worked on, it can only be for the good.
Am I right?
Friday, December 2, 2011
It wasn't all bad
Doctor #1 was very nice. I wish I had of left with ANSWERS, but there have been times I've left doctors after a big song and dance about how they WILL help me and figure it out, only to have them unable to figure it out, leaving me with a big disappointment. I just need to get up the will to figure out, take, and send in the rather complicated tests.
And, there was a stop at Panera Bread. Wow, that's good!
Probably the best part was the end of my first appointment (ok, the BEST part was fleeing Doctor #2's den of misery). During the course of my interview, he asked if I had a religious faith. I said, "I'm a Christian. I get mad at God, but I think He can take it." And moved on. At the end of my visit, the doctor shocked me (in a good way), by asking if we could pray together. He asked God to help him find out what's wrong, so he could help me.
That was worth the price of admission right there. So, I guess I'll try to do what my friend the genie suggested and focus on that appointment. I don't want to give up any more of my time (even in my head) to that other guy.
One more appointment to go, this time a phone appointment. Then we move forward.
And, there was a stop at Panera Bread. Wow, that's good!
Probably the best part was the end of my first appointment (ok, the BEST part was fleeing Doctor #2's den of misery). During the course of my interview, he asked if I had a religious faith. I said, "I'm a Christian. I get mad at God, but I think He can take it." And moved on. At the end of my visit, the doctor shocked me (in a good way), by asking if we could pray together. He asked God to help him find out what's wrong, so he could help me.
That was worth the price of admission right there. So, I guess I'll try to do what my friend the genie suggested and focus on that appointment. I don't want to give up any more of my time (even in my head) to that other guy.
One more appointment to go, this time a phone appointment. Then we move forward.
Thursday, December 1, 2011
The good, the bad, and the ugly
Getting into Redmond, via Yahoo's map, was tricky. Once we got there, it was quite pleasant, as was the doctor. I was there 1.5 hours. He took a lengthy oral history, and was thoughtful, interested, and informed.
He loaded me up with tests. Only one of them is a simple, stop at the hospital and get a blood draw. The others are various and sundry collections. Fun! And sadly, expensive, which my insurance *might* cover some of. And, did I mention he's in REDMOND?
We rushed to doctor visit #2. Wow, was that a mistake. This guy is THE weight guy. Allegedly. The guy it takes months to get in to see. And wow--what a jerk! I've seen over 100 doctors in my health journey. Well over. I don't even want to try and count. It's a lot.
This guy is in the Top 5 of bad doctors. He was condescending, rude, a horrible listener, and not the slightest bit helpful. Clearly, I eat too much, and that's my only problem. I'm stupid for thinking I have a cortisol problem (despite admitting I have many of those symptoms). And my dizziness, fatigue, and chronic pain issues seemed to just not be heard by him whatsoever, despite Mark and I both repeating ourselves.
He kept saying I needed a better diet. He had no answers for gaining 2# a week for months on end, repeatedly. I could go on and on for hours about what a horrible experience I was, but I'll spare us both.
So, I'm feeling a bit low, and a bit dysphoric. Almost anhedonic, but not quite. It's hard to hold on to hope. It really is. On the trip home I had to consider something: they may not be able to diagnose what's wrong with me. I may have to live like this (I hope).
At the end of the first appointment (with the nice one), I said, "I have one more question." He said to go ahead. I said, "I know you specialize in the unusual, the hard to diagnose and treat" (He's a fibromyalgia/environmental medicine doctor). He said that is true. I then asked, "I kind of stand out, don't I?" He looked at me kindly and said, "Yes. I generally see the one in 100. You're the one percent of one percent."
And please no jokes about me being a "special person." If I hear that one more time, I might just give in to what my heart wants to do, which is curl up in a ball on the floor and cry.
He loaded me up with tests. Only one of them is a simple, stop at the hospital and get a blood draw. The others are various and sundry collections. Fun! And sadly, expensive, which my insurance *might* cover some of. And, did I mention he's in REDMOND?
We rushed to doctor visit #2. Wow, was that a mistake. This guy is THE weight guy. Allegedly. The guy it takes months to get in to see. And wow--what a jerk! I've seen over 100 doctors in my health journey. Well over. I don't even want to try and count. It's a lot.
This guy is in the Top 5 of bad doctors. He was condescending, rude, a horrible listener, and not the slightest bit helpful. Clearly, I eat too much, and that's my only problem. I'm stupid for thinking I have a cortisol problem (despite admitting I have many of those symptoms). And my dizziness, fatigue, and chronic pain issues seemed to just not be heard by him whatsoever, despite Mark and I both repeating ourselves.
He kept saying I needed a better diet. He had no answers for gaining 2# a week for months on end, repeatedly. I could go on and on for hours about what a horrible experience I was, but I'll spare us both.
So, I'm feeling a bit low, and a bit dysphoric. Almost anhedonic, but not quite. It's hard to hold on to hope. It really is. On the trip home I had to consider something: they may not be able to diagnose what's wrong with me. I may have to live like this (I hope).
At the end of the first appointment (with the nice one), I said, "I have one more question." He said to go ahead. I said, "I know you specialize in the unusual, the hard to diagnose and treat" (He's a fibromyalgia/environmental medicine doctor). He said that is true. I then asked, "I kind of stand out, don't I?" He looked at me kindly and said, "Yes. I generally see the one in 100. You're the one percent of one percent."
And please no jokes about me being a "special person." If I hear that one more time, I might just give in to what my heart wants to do, which is curl up in a ball on the floor and cry.
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