I wish I could say "a very little" on convalescence, but it seems I'm learning another one of those life lessons on not pushing things faster than nature intends.
Nature does NOT intend for you to have mild green fish curry with rice instead of plain noodle soup even though you've been "okay" for a few days...
Nature does NOT intend for you to go to a doctor's appointment with a brand new endocrinologist who will scrutinize your records and not know you or your history. Have a nice anxiety attack and throw up instead.
Nature does NOT intend for you to skip medications until Nature says it's okay. And you do not get to know when that is.
Nature does NOT intend for you to do last minute Christmas shopping at crazy places, and then still be able to wrap gifts and play Santa on Christmas Eve.
Nature does NOT intend for you to have a glass of wine or champagne to celebrate anything (ever?)
Nature seems to have a lot of rules about convalescence that I never heard of before after being sick...and I am having a bit of a time dealing with it. Personally, I've been in the bounce back quickly and strong club for the most part. But the good news is that I'm starting to reach an acceptance about it. And even wondering whether I really ever did bounce back so quickly as I thought.
just a food for thought as I ponder how to approach a New Year...
Friday, December 30, 2011
Friday, December 2, 2011
When you can't tell if you are derailed or moving forward...
...rest assured. We are all still moving forward whether we think so or not.
I had been feeling derailed due to the last episode of CVS and how long it's taken to feel recovered. But some things happened this week, so I am moving forward nonetheless.
I've been feeling emotional, and worried that means my hormones are wacky. But since there's nothing I can do about my hormones at the moment, I decided to stop and feel some of the emotions.
For example, I was thinking a lot about one of my first aerobics instructors from Gold's Gym in Berkeley after I moved here to go to grad school. Jimmy. He was so funny - and in my memory I still see his late 80s aerobics outfits burned there permanently. We got to be friends like you do when you are the student who always goes to the front of the class, and you ride BART together sometimes and compare mixtapes in your Walkman to see what the other is listening to. But still "gym friends" - one of those special compartmentalized friendships that we form, and they seem pretty transient when you look back over longer periods of your life. I think I started thinking about Jimmy because the satellite radio in my car is dialed to "First Wave" - ie alternative from late 80s early 90s - and they've been playing a lot of Yaz. And that was one of Jimmy's favorites. And I've been boning up on some HIV science for work lately. And Jimmy was the first person I knew who got AIDS, and then died too quickly after diagnosis.
I saw the acupunturist/chinese medicine man on Wednesday. He was quite remarkable - I can see why he has a cult-like following in Yelp and on BPN. I'll call him Dr. Who in honor of his cult status and enigmatic apparent brilliance since I'm still uncomfortable using people's real names in my blog without their knowledge or permission.
It took me like an hour and a half to fill in all the questionnaires for this first appointment ahead of time. Then we spent an hour going over all of it. As I suspected, my body is out of whack. duh. But he didn't treat any of it like it was incomprehensible. In fact, my long term health history is pretty interesting, and I have long thought that the right type of doctor would want to dig in and figure out what the common thread is to my largely over-reactive autoimmune system. Because the stuff I have doesn't all tie together like the textbooks...but there have to be some threads tying them all together. It wouldn't be right otherwise to have diabetes, chronic sarcoid, weird stuff in your history like Guillian-Barre and Horner's syndrome, and cluster headaches, and thyroid nodules with autoantibodies, and blah blah blah...you can go back to an earlier post if you want a current laundry list. But the history is even worse!
Dr. Who is fascinated my my history, has seen similar complex people, and wanted to know what I thought about how some of these things tie together - especially the sarcoid and autoimmune issues and had I ever been tested for Lyme disease (yes, in grad school when I had some weird hip dysplasia thing), and what did I think about other infectious causes (yes, I've thought about that a lot given some of this started when I went to Africa for example).
He even works with Duypetren's (though I still have to get the finger straightened out that's already curling up).
Dr. Who had some scoring thing for hormone balances and depletion and felt my pulse (I guess the Chinese version) - declared my blood was barely moving and given the state of my adrenals and testosterone, etc. etc. that it was only a testament to my force of will (and I guess my sense of humor) that I'm still functioning at as high a level as I am.
He seemed to "get" me - which scared me a little to be honest. When I lay down on the table to get needled, he left the room for a few minutes and I burst into tears. I had to get them out to make room for some hope.
I realized that this force of will thing is big for me. And the thing about using your will to move you around and through obstacles and to move what feel like mountains just to get through one day to the next is that you get cynical. You start to believe only in yourself and that there isn't much to be done "for" you medically so if you want to carry on you'd better just get to it. To give up some of that control to make room for hope is really hard. Hope should be omnipresent - it is the ultimate healing sentiment. It also means taking that risk of disappointment and failure.
I'm such a dork. I think or did think of myself as a very hopeful person. But I used to think I was romantic too, and eventually realized I'm completely cynical about love too. Although Mr. Wonderful changed my mind and heart in that regard, so I know that change is possible. But it takes a long time.
After over 30 years of dealing with chronic disease(s), the fact of the matter is, I guess, that I have lost hope and replaced it with stubborn self reliance and force of will. Dr. Who made me want to hope for a change.
Keep Calm and Carry On!
I had been feeling derailed due to the last episode of CVS and how long it's taken to feel recovered. But some things happened this week, so I am moving forward nonetheless.
I've been feeling emotional, and worried that means my hormones are wacky. But since there's nothing I can do about my hormones at the moment, I decided to stop and feel some of the emotions.
For example, I was thinking a lot about one of my first aerobics instructors from Gold's Gym in Berkeley after I moved here to go to grad school. Jimmy. He was so funny - and in my memory I still see his late 80s aerobics outfits burned there permanently. We got to be friends like you do when you are the student who always goes to the front of the class, and you ride BART together sometimes and compare mixtapes in your Walkman to see what the other is listening to. But still "gym friends" - one of those special compartmentalized friendships that we form, and they seem pretty transient when you look back over longer periods of your life. I think I started thinking about Jimmy because the satellite radio in my car is dialed to "First Wave" - ie alternative from late 80s early 90s - and they've been playing a lot of Yaz. And that was one of Jimmy's favorites. And I've been boning up on some HIV science for work lately. And Jimmy was the first person I knew who got AIDS, and then died too quickly after diagnosis.
I saw the acupunturist/chinese medicine man on Wednesday. He was quite remarkable - I can see why he has a cult-like following in Yelp and on BPN. I'll call him Dr. Who in honor of his cult status and enigmatic apparent brilliance since I'm still uncomfortable using people's real names in my blog without their knowledge or permission.
It took me like an hour and a half to fill in all the questionnaires for this first appointment ahead of time. Then we spent an hour going over all of it. As I suspected, my body is out of whack. duh. But he didn't treat any of it like it was incomprehensible. In fact, my long term health history is pretty interesting, and I have long thought that the right type of doctor would want to dig in and figure out what the common thread is to my largely over-reactive autoimmune system. Because the stuff I have doesn't all tie together like the textbooks...but there have to be some threads tying them all together. It wouldn't be right otherwise to have diabetes, chronic sarcoid, weird stuff in your history like Guillian-Barre and Horner's syndrome, and cluster headaches, and thyroid nodules with autoantibodies, and blah blah blah...you can go back to an earlier post if you want a current laundry list. But the history is even worse!
Dr. Who is fascinated my my history, has seen similar complex people, and wanted to know what I thought about how some of these things tie together - especially the sarcoid and autoimmune issues and had I ever been tested for Lyme disease (yes, in grad school when I had some weird hip dysplasia thing), and what did I think about other infectious causes (yes, I've thought about that a lot given some of this started when I went to Africa for example).
He even works with Duypetren's (though I still have to get the finger straightened out that's already curling up).
Dr. Who had some scoring thing for hormone balances and depletion and felt my pulse (I guess the Chinese version) - declared my blood was barely moving and given the state of my adrenals and testosterone, etc. etc. that it was only a testament to my force of will (and I guess my sense of humor) that I'm still functioning at as high a level as I am.
He seemed to "get" me - which scared me a little to be honest. When I lay down on the table to get needled, he left the room for a few minutes and I burst into tears. I had to get them out to make room for some hope.
I realized that this force of will thing is big for me. And the thing about using your will to move you around and through obstacles and to move what feel like mountains just to get through one day to the next is that you get cynical. You start to believe only in yourself and that there isn't much to be done "for" you medically so if you want to carry on you'd better just get to it. To give up some of that control to make room for hope is really hard. Hope should be omnipresent - it is the ultimate healing sentiment. It also means taking that risk of disappointment and failure.
I'm such a dork. I think or did think of myself as a very hopeful person. But I used to think I was romantic too, and eventually realized I'm completely cynical about love too. Although Mr. Wonderful changed my mind and heart in that regard, so I know that change is possible. But it takes a long time.
After over 30 years of dealing with chronic disease(s), the fact of the matter is, I guess, that I have lost hope and replaced it with stubborn self reliance and force of will. Dr. Who made me want to hope for a change.
Keep Calm and Carry On!
Saturday, November 19, 2011
Hallucinations, no matter how well meaning, do not qualify as Self Help
Well, THAT title is sure misleading! Because I got bored with my hallucinations and have moved on several times over since then.
However, I will say that for a control freak, hallucinations are right up there with whatever drugs they try to sedate you with when putting you under - NOT RELAXING ME. Especially worse when your loved ones tell you that you were going off about too many layers of meat on your bed and how your new boots were stolen, and if we could just get through that last layer of sleep there's something special - a prize? I just don't know. I never got there.
But hey, there is more Self Help on the way! Because my trip to Dr. Say Nothing, the gastroenterologist was beyond disapointing. I need to see a "super-specialist" I guess. And let me guess what else - are there like only one of these magical people in the entireworld Bay Area? And let me guess what else? Would their first availability be sometime after monkeys fly out of my butt? February? earliest?
Yeah. So, what does any self respecting over-educated Ph.D. do at a time like this? Search the internet!! (duh). I have made an appointment with an acupuncturist here in Alameda who seems to have a cult-like following - and this put me off and I almost went with the nice lady (I assume shes nice) who is actually partially covered by my insurance. But then I realized the amount of money the insurance company was going to reimburse were fairly small so I went for the Acupuncturist with a capital A and a radio show and 72 Yelp reviews, all positive, and half a dozen recommendations on Berkeley Parents Network. He also has a lot of policies and his staff want to be sure you know it is expensive right up front. So I'm nervous. But I'm going. If it is too cult-y for me I can always go to plan B - the nice lady with better rates and coverage.
I also researched my herbal and supplement options and ordered/bought some expensive stuff to try. Actually one is like an old friend - I can't wait until I get my bottle. "Iberogast" - an herbal concoction I used for my tummy years ago that really seemed to help. But they didn't sell it at the local health food store. Oh well.
Parting rant:
Gastroparesis - a problem I know pretty well. I know the symptoms, what makes it worse (sometimes) - it flares, it goes. It does NOT cause bouts of uncontrolled vomiting 4-12 times per hour for a week following a pretty predictable cycle. Period. Dr. Say Nothing just didn't seem to get this. When I asked this so called specialist was it GP when I had pregnancy induced hyperemesis, he said OOOH NO - that is something entirely different! Still I couldn't get a lightbulb to go on for the concept of a hormonal or migraine like problem lately even though I do have some gastroparesis.
It happens all the time. If you have (insert chronic disease here, in my case diabetes), then the most logical choice for a doctor is to pin your new problem squarely onto that old problem. I believe in parsimony, but I believe more strongly that a diagnostician should be thinking about all the cards on the table and turning them over one at a time. Not just looking at the same 2 or 3 and trying to make new hands out of them when it just doesn't make sense anymore.
sheesh.
However, I will say that for a control freak, hallucinations are right up there with whatever drugs they try to sedate you with when putting you under - NOT RELAXING ME. Especially worse when your loved ones tell you that you were going off about too many layers of meat on your bed and how your new boots were stolen, and if we could just get through that last layer of sleep there's something special - a prize? I just don't know. I never got there.
But hey, there is more Self Help on the way! Because my trip to Dr. Say Nothing, the gastroenterologist was beyond disapointing. I need to see a "super-specialist" I guess. And let me guess what else - are there like only one of these magical people in the entire
Yeah. So, what does any self respecting over-educated Ph.D. do at a time like this? Search the internet!! (duh). I have made an appointment with an acupuncturist here in Alameda who seems to have a cult-like following - and this put me off and I almost went with the nice lady (I assume shes nice) who is actually partially covered by my insurance. But then I realized the amount of money the insurance company was going to reimburse were fairly small so I went for the Acupuncturist with a capital A and a radio show and 72 Yelp reviews, all positive, and half a dozen recommendations on Berkeley Parents Network. He also has a lot of policies and his staff want to be sure you know it is expensive right up front. So I'm nervous. But I'm going. If it is too cult-y for me I can always go to plan B - the nice lady with better rates and coverage.
I also researched my herbal and supplement options and ordered/bought some expensive stuff to try. Actually one is like an old friend - I can't wait until I get my bottle. "Iberogast" - an herbal concoction I used for my tummy years ago that really seemed to help. But they didn't sell it at the local health food store. Oh well.
Parting rant:
Gastroparesis - a problem I know pretty well. I know the symptoms, what makes it worse (sometimes) - it flares, it goes. It does NOT cause bouts of uncontrolled vomiting 4-12 times per hour for a week following a pretty predictable cycle. Period. Dr. Say Nothing just didn't seem to get this. When I asked this so called specialist was it GP when I had pregnancy induced hyperemesis, he said OOOH NO - that is something entirely different! Still I couldn't get a lightbulb to go on for the concept of a hormonal or migraine like problem lately even though I do have some gastroparesis.
It happens all the time. If you have (insert chronic disease here, in my case diabetes), then the most logical choice for a doctor is to pin your new problem squarely onto that old problem. I believe in parsimony, but I believe more strongly that a diagnostician should be thinking about all the cards on the table and turning them over one at a time. Not just looking at the same 2 or 3 and trying to make new hands out of them when it just doesn't make sense anymore.
sheesh.
Saturday, November 5, 2011
Is there really such a thing as "self-help"?
Well, of course there is. But I've had at least 3 conversations in the past week that touched on why we need help. From OTHER PEOPLE.
Like your family. Your husband, your daughter, your mom, your sister. (even Wild Thing in his own way). These are all people who truly madly deeply love and care for me. And they are all smart, and sensitive, and complex all in different ways. And they've known me a long time - especially probably my sister who I let see all my sides pretty early on. My mom has been a rock for me since I let her into my life after Grace was born. Before that, I didn't really think we had that much in common and she seemed mysterious to me. What a shock to learn over the past 17 years how much like my mom I am. I remember when I was like, 10, or 15, thinking I was more like my dad - volatile, moody, kinda a cry-baby (sorry dad if you are reading this but it's sort of true you have to admit...maybe "sap" is more fair to both of us). But that is 100% incorrect. Of course, I'm my own complex individual, not some clone of my mother - I'm just saying Kind of another way where we are dumb about things as youngsters, and for some of us, painfully lacking in self-awareness. Late bloomers is what my mom and I have in common in that sense. Anyway, I am also blessed to have more extended family who are so supportive of me (like the nicest mother-in-law anyone could ask for and all my in-law relatives in Mr. Wonderful's family for that matter - I guess that's how he turned out practically perfect in every way. minus the magic carpet bag. And the boobs...), and cousins and aunts and on and on...
And of course most people accept help from their medical core team - since we are talking about Self Help primarily from the health side of things. However, I happen to be a very bad patient - argumentative, always coming in with obnoxious questions based on things I read in Science News, or worse ON THE INTERNET! I question everything, every test, every new medication, why do you need to put in a 3rd IV when I already have 2 - can't you combine up some of that tubing somewhere!? I'm a pain in the ASS for these fine medical professionals.
Anyway, I had this same conversation with Lynn the diabetes educator on Friday at my appointment. And I explained to her how much more I let myself rely on others for support than I did, say, 15 or 20 years ago. There's a wisdom category I'm glad to have accrued some stock in over the years.
btw - I had a successful couple of weeks re tuning my diabetes care regimen. Little things, like tweaking the basal rates of insulin my pump spits out, and the revelation that I don't have to limit these adjustments due to my frequent travels. DUH! My pump can store additional profiles, like one specifically for travel that I can switch to. Now why did I never think of this obvious thing myself? Well, sometimes we just need some supportive person to gently tweeze that kind of solution out of us. Lynn didn't know that my pump could do that actually, but if I hadn't been brainstorming with her I never would have. wow. Anyway, my software for data dumping and reporting all my blood sugar and insulin info spit out these 2-week reports and I made the last 2-week report for Lynn as well as the report for the preceding 2 weeks. There are these little pie charts showing how many of your sugars are above "range" (i.e. over 140 mg/dl), how many are below (lower than 65 mg/dl), and how many are in range. So just 2 weeks of continuous glucose monitoring and me making this a higher priority resulted in an old pie chart that was something like 90% yellow (over range), 2% red (below), and less than 10% in range. Now, I do test a lot, including post-meals which are rarely under 140 and that's okay. BUT come on - really? 90% over? Guess what the new one looked like? close to 50% "in range", and 45% over range. I had a couple more lows...so that's where the balance comes in at some point. Get as tight as you can without too many of those hypoglycemic episodes. They are a little scary. I've never actually passed out or anything, but I have gotten lightheaded with sort of black spotty vision which is very close ( I know from fainting a couple of other times). Anyway, that was worth a little happy dance - progress that is right there in the data - my favorite kind!
Back to your support network - And lastly my friends - the ones who aren't my family (for they surely count). I have such a fabulous range of different friends, and as I said in my previous post (or was it 2 back?) - I need to get into the habit again of reaching out to them. Going for coffee, going for lunch, talking on the phone, going for walks together. I haven't been doing enough of that AT ALL. I was visiting with a good friend who is here from out of town for the AASLD (Liver) conference (hey, it's my job - I know it sounds goofy to go to a Liver conference). He was pretty much lecturing me on not being so hard on myself, being more optimistic about the future where in his mind there will be a CURE for diabetes, and that I have this great life and my health is not so bad.
And he's right. My health is still manageable - nothing that is threatening my life in an imminent manner. I am lucky. I haven't had to add an Oncologist to my team yet, or a Cardiologist...
And I have a great marriage (11 years yesterday - yay), and these two intelligent, sensitive, complex children who are growing into the most interesting people you'd ever want to know. I have a good job that I still find interesting (most of the time).
But about this CURE for diabetes, we did have an argument about that one. I care so much more about a possible prevention for young people at risk for diabetes - have autoantibodies, but at this point there is absolutely nothing you can do to prevent type 1 from striking. Type 2 probably needs even more attention, since it's becoming such an epidemic...but a cure for an old diabetic like me is less important than taking care of what I've got with the best tools available. If I ever do get cured, I'd like all my parts to still be in working order more or less!
In short, self-help is the cornerstone - no one else can do this for you. But you can't do it alone. Well, I can't anyway. There is a level of stoicism that I notice I also picked up from my amazing mother - it can serve you well as long as you know when to lower your shield.
wishing you all good health and long life!
Like your family. Your husband, your daughter, your mom, your sister. (even Wild Thing in his own way). These are all people who truly madly deeply love and care for me. And they are all smart, and sensitive, and complex all in different ways. And they've known me a long time - especially probably my sister who I let see all my sides pretty early on. My mom has been a rock for me since I let her into my life after Grace was born. Before that, I didn't really think we had that much in common and she seemed mysterious to me. What a shock to learn over the past 17 years how much like my mom I am. I remember when I was like, 10, or 15, thinking I was more like my dad - volatile, moody, kinda a cry-baby (sorry dad if you are reading this but it's sort of true you have to admit...maybe "sap" is more fair to both of us). But that is 100% incorrect. Of course, I'm my own complex individual, not some clone of my mother - I'm just saying Kind of another way where we are dumb about things as youngsters, and for some of us, painfully lacking in self-awareness. Late bloomers is what my mom and I have in common in that sense. Anyway, I am also blessed to have more extended family who are so supportive of me (like the nicest mother-in-law anyone could ask for and all my in-law relatives in Mr. Wonderful's family for that matter - I guess that's how he turned out practically perfect in every way. minus the magic carpet bag. And the boobs...), and cousins and aunts and on and on...
And of course most people accept help from their medical core team - since we are talking about Self Help primarily from the health side of things. However, I happen to be a very bad patient - argumentative, always coming in with obnoxious questions based on things I read in Science News, or worse ON THE INTERNET! I question everything, every test, every new medication, why do you need to put in a 3rd IV when I already have 2 - can't you combine up some of that tubing somewhere!? I'm a pain in the ASS for these fine medical professionals.
Anyway, I had this same conversation with Lynn the diabetes educator on Friday at my appointment. And I explained to her how much more I let myself rely on others for support than I did, say, 15 or 20 years ago. There's a wisdom category I'm glad to have accrued some stock in over the years.
btw - I had a successful couple of weeks re tuning my diabetes care regimen. Little things, like tweaking the basal rates of insulin my pump spits out, and the revelation that I don't have to limit these adjustments due to my frequent travels. DUH! My pump can store additional profiles, like one specifically for travel that I can switch to. Now why did I never think of this obvious thing myself? Well, sometimes we just need some supportive person to gently tweeze that kind of solution out of us. Lynn didn't know that my pump could do that actually, but if I hadn't been brainstorming with her I never would have. wow. Anyway, my software for data dumping and reporting all my blood sugar and insulin info spit out these 2-week reports and I made the last 2-week report for Lynn as well as the report for the preceding 2 weeks. There are these little pie charts showing how many of your sugars are above "range" (i.e. over 140 mg/dl), how many are below (lower than 65 mg/dl), and how many are in range. So just 2 weeks of continuous glucose monitoring and me making this a higher priority resulted in an old pie chart that was something like 90% yellow (over range), 2% red (below), and less than 10% in range. Now, I do test a lot, including post-meals which are rarely under 140 and that's okay. BUT come on - really? 90% over? Guess what the new one looked like? close to 50% "in range", and 45% over range. I had a couple more lows...so that's where the balance comes in at some point. Get as tight as you can without too many of those hypoglycemic episodes. They are a little scary. I've never actually passed out or anything, but I have gotten lightheaded with sort of black spotty vision which is very close ( I know from fainting a couple of other times). Anyway, that was worth a little happy dance - progress that is right there in the data - my favorite kind!
Back to your support network - And lastly my friends - the ones who aren't my family (for they surely count). I have such a fabulous range of different friends, and as I said in my previous post (or was it 2 back?) - I need to get into the habit again of reaching out to them. Going for coffee, going for lunch, talking on the phone, going for walks together. I haven't been doing enough of that AT ALL. I was visiting with a good friend who is here from out of town for the AASLD (Liver) conference (hey, it's my job - I know it sounds goofy to go to a Liver conference). He was pretty much lecturing me on not being so hard on myself, being more optimistic about the future where in his mind there will be a CURE for diabetes, and that I have this great life and my health is not so bad.
And he's right. My health is still manageable - nothing that is threatening my life in an imminent manner. I am lucky. I haven't had to add an Oncologist to my team yet, or a Cardiologist...
And I have a great marriage (11 years yesterday - yay), and these two intelligent, sensitive, complex children who are growing into the most interesting people you'd ever want to know. I have a good job that I still find interesting (most of the time).
But about this CURE for diabetes, we did have an argument about that one. I care so much more about a possible prevention for young people at risk for diabetes - have autoantibodies, but at this point there is absolutely nothing you can do to prevent type 1 from striking. Type 2 probably needs even more attention, since it's becoming such an epidemic...but a cure for an old diabetic like me is less important than taking care of what I've got with the best tools available. If I ever do get cured, I'd like all my parts to still be in working order more or less!
In short, self-help is the cornerstone - no one else can do this for you. But you can't do it alone. Well, I can't anyway. There is a level of stoicism that I notice I also picked up from my amazing mother - it can serve you well as long as you know when to lower your shield.
wishing you all good health and long life!
Monday, October 31, 2011
Let's talk about type 1 diabetes...I'm growing bored with my stupid stomach issues
I'm taking a day off work today. Firstly, it's Halloween. Secondly, I still don't have my full energy and digestive capabilities to 100%. Thirdly, I have to work at a conference all next weekend. Lastly, I've accrued so much vacation that I can't accrue anymore unless I use it more often - so I may try taking every other Friday off or something like that for a little while.
Type 1 diabetes - this is the kind where injecting insulin is not optional. About 32 years ago, some unknown trigger pulled a fast one on my immune system and tricked it into thinking my pancreatic beta-cells were foreign imperialists who should be crushed by a rebel alliance. Since my understanding of immunology is still embarrassingly slim, I'll go for the dramatic version of the story. Given I've been around smart immunologists for a couple of decades, you'd think something would have seeped in by osmosis. I guess knowledge rarely gets in that way.
I had all the classic symptoms - weight loss, excessive thirst, had to pee all the time, etc. When my friends refused to ski with me at ski club because I had to go back to the lodge and pee after every run, I finally mentioned something to my parents. Since my hair was also falling out, I did a little research and narrowed the horrible self-diagnoses to either cancer or diabetes. Sometimes I can't believe how dumb I was as a kid. But now that I think of my extremely sensitive and bright children I realize that even the smartest teen is still kinda dumb.
blah blah blah - a blur of tests and a stay at Good Sam in Portland at the diabetes treatment unit, and they cut me loose with my urine testing tablets, and my strict regimented diet and exercise plan. None of which I was very successful at (that sentence looks wrong, but I'll fix it when I get a publisher - hahahahaha!). But neither was I planning to let this ruin my plans for a BIG life. heh. sorta dumb again, but then again maybe this last attitude has saved me from my blundering diabetic habits.
Anyway, over the next 10 years I learned about glucose monitoring, and still struggled with controlling diabetes until my awesome endocrinologist (Dr. Hohl, probably long retired) convinced me that my perfectionistic tendencies were sabotaging my efforts and wouldn't I consider seeing a shrink friend of his who also happens to have diabetes.
Here's what I remember thinking "okay Dr. Hohl - first of all we in my family do not believe in shrinks. We either pull ourselves up by our bootstraps or just tolerate being insane and drive our loved ones into the brink of despair along the way. Or some complex combination of that more typically." Then I thought "why do people keep accusing me of being a perfectionist? I NEVER do anything perfectly!!"
And then I thought "I don't want to make up the bG numbers in my log book anymore to appear perfect and this guy isn't fooled anyway (at 22 you do start to get a tiny bit smarter. but only a tad), and I'm so unhappy." So I gave it a try. The guys name was Tony Something, and he did testing on me and proclaimed me to have something called "Anxiety response" and "Obsessive Compulsive Personality Disorder" which I guess is like OCD lite. OCD lite can make you a better scientist though if you can keep the OCD Personality in check. That's what the shrink told me anyway, and I choose to believe it. All those lists and careful double checking of everything can make your experiments much more reproducible.
My HbA1C (the portion of your hemoglobin that is glycosylated, meaning there's sugar attached to it and if you have lots more sugar in your blood than you should have then you get way more glycosylated hemoglobin than you should have) dropped from 13.9% (shockingly, scary high) to about 5.9% (brilliant figure that I aspire to someday reach again) in less than 6 months. Dr. Hohl was so excited he wrote this funny note on my lab report with a huge smiley face and an overabundance of explanation points. Who has a doctor who does that kind of thing? He was the best.
That experiment with the shrink taught me several valuable lessons. But the diabetes related ones were 1) my emotional well-being is tightly linked to glucose control. I don't really remember making any big drastic changes to my diet and exercise, though I'm sure I did - when you feel better you just do better things for yourself and make better choices. 2) the numbers on my glucose meter were just information to help me - they weren't 4-6 chances a day to remind myself what a crappy failure of a person I was because they weren't "good" numbers. Although I still do a little happy dance inside when the numbers do look good for a whole day. and 3) going to a shrink, if it is a good shrink (and that's quite a caveat), is a good thing and I do not care if my family thinks I am weak for going to get some help keeping my perspective.
Sidebar on getting professional emotional support: At first I justified this with the whole "I have more to deal with so how many fucking bootstraps do I have to be pulling up all the time? Geez!" And then there was the fact that I realized I don't want to be a crazy person. I already have the tendencies and sometimes a crazy person does walk out of my bedroom door and into the world for a day or a week. But I always slap her silly face and tell her to "snap out of it"! And over the years there have been a couple of tragedies and traumas that seem to have permanently changed my brain so that I need to be more vigilant about when I'm slipping down the slope. I also gave up on the idea that anti-depressants are for weenies without any bootstraps. If your brain needs a boost to get back in working order, by all means give it some way to re-balance as quickly as possible. If all that makes me a weaker person, well you wouldn't be able to tell by looking at me. Ha! and remember "It's not how you feel, it's how you look. And you look Mah-velous!"
Okay, back to diabetes. The last time I was in super tight control was during pregnancy. With Teen Wonder, I tested my bG 12 times a day and took as many injections as I had to in order to keep things as tight as possible. My HbA1C got down to something like 4.7% - I also lost the ability to feel when I was getting hypoglycemic, so there does have to be a balance. For the past few years I've been sort of on autopilot - not doing terrible, not doing great. HbA1C range from 7.2% to as high as 8%. Right now about 7.6% I think, though I haven't been testing for several months (bad diabetic! don't do this at home!). I've been using an insulin pump for about 10 years now - it makes travel easier, and I don't have as many dangerous low blood sugars at night; however, it did not transform me into a better diabetic.
Since everything that can go wrong for anyone medically gets worse and more complicated if you have diabetes, it makes sense to attach this head on right now. I had a great visit with the Diabetes Angel/Educator last week and she started with some simple stuff:
Type 1 diabetes - this is the kind where injecting insulin is not optional. About 32 years ago, some unknown trigger pulled a fast one on my immune system and tricked it into thinking my pancreatic beta-cells were foreign imperialists who should be crushed by a rebel alliance. Since my understanding of immunology is still embarrassingly slim, I'll go for the dramatic version of the story. Given I've been around smart immunologists for a couple of decades, you'd think something would have seeped in by osmosis. I guess knowledge rarely gets in that way.
I had all the classic symptoms - weight loss, excessive thirst, had to pee all the time, etc. When my friends refused to ski with me at ski club because I had to go back to the lodge and pee after every run, I finally mentioned something to my parents. Since my hair was also falling out, I did a little research and narrowed the horrible self-diagnoses to either cancer or diabetes. Sometimes I can't believe how dumb I was as a kid. But now that I think of my extremely sensitive and bright children I realize that even the smartest teen is still kinda dumb.
blah blah blah - a blur of tests and a stay at Good Sam in Portland at the diabetes treatment unit, and they cut me loose with my urine testing tablets, and my strict regimented diet and exercise plan. None of which I was very successful at (that sentence looks wrong, but I'll fix it when I get a publisher - hahahahaha!). But neither was I planning to let this ruin my plans for a BIG life. heh. sorta dumb again, but then again maybe this last attitude has saved me from my blundering diabetic habits.
Anyway, over the next 10 years I learned about glucose monitoring, and still struggled with controlling diabetes until my awesome endocrinologist (Dr. Hohl, probably long retired) convinced me that my perfectionistic tendencies were sabotaging my efforts and wouldn't I consider seeing a shrink friend of his who also happens to have diabetes.
Here's what I remember thinking "okay Dr. Hohl - first of all we in my family do not believe in shrinks. We either pull ourselves up by our bootstraps or just tolerate being insane and drive our loved ones into the brink of despair along the way. Or some complex combination of that more typically." Then I thought "why do people keep accusing me of being a perfectionist? I NEVER do anything perfectly!!"
And then I thought "I don't want to make up the bG numbers in my log book anymore to appear perfect and this guy isn't fooled anyway (at 22 you do start to get a tiny bit smarter. but only a tad), and I'm so unhappy." So I gave it a try. The guys name was Tony Something, and he did testing on me and proclaimed me to have something called "Anxiety response" and "Obsessive Compulsive Personality Disorder" which I guess is like OCD lite. OCD lite can make you a better scientist though if you can keep the OCD Personality in check. That's what the shrink told me anyway, and I choose to believe it. All those lists and careful double checking of everything can make your experiments much more reproducible.
My HbA1C (the portion of your hemoglobin that is glycosylated, meaning there's sugar attached to it and if you have lots more sugar in your blood than you should have then you get way more glycosylated hemoglobin than you should have) dropped from 13.9% (shockingly, scary high) to about 5.9% (brilliant figure that I aspire to someday reach again) in less than 6 months. Dr. Hohl was so excited he wrote this funny note on my lab report with a huge smiley face and an overabundance of explanation points. Who has a doctor who does that kind of thing? He was the best.
That experiment with the shrink taught me several valuable lessons. But the diabetes related ones were 1) my emotional well-being is tightly linked to glucose control. I don't really remember making any big drastic changes to my diet and exercise, though I'm sure I did - when you feel better you just do better things for yourself and make better choices. 2) the numbers on my glucose meter were just information to help me - they weren't 4-6 chances a day to remind myself what a crappy failure of a person I was because they weren't "good" numbers. Although I still do a little happy dance inside when the numbers do look good for a whole day. and 3) going to a shrink, if it is a good shrink (and that's quite a caveat), is a good thing and I do not care if my family thinks I am weak for going to get some help keeping my perspective.
Sidebar on getting professional emotional support: At first I justified this with the whole "I have more to deal with so how many fucking bootstraps do I have to be pulling up all the time? Geez!" And then there was the fact that I realized I don't want to be a crazy person. I already have the tendencies and sometimes a crazy person does walk out of my bedroom door and into the world for a day or a week. But I always slap her silly face and tell her to "snap out of it"! And over the years there have been a couple of tragedies and traumas that seem to have permanently changed my brain so that I need to be more vigilant about when I'm slipping down the slope. I also gave up on the idea that anti-depressants are for weenies without any bootstraps. If your brain needs a boost to get back in working order, by all means give it some way to re-balance as quickly as possible. If all that makes me a weaker person, well you wouldn't be able to tell by looking at me. Ha! and remember "It's not how you feel, it's how you look. And you look Mah-velous!"
Okay, back to diabetes. The last time I was in super tight control was during pregnancy. With Teen Wonder, I tested my bG 12 times a day and took as many injections as I had to in order to keep things as tight as possible. My HbA1C got down to something like 4.7% - I also lost the ability to feel when I was getting hypoglycemic, so there does have to be a balance. For the past few years I've been sort of on autopilot - not doing terrible, not doing great. HbA1C range from 7.2% to as high as 8%. Right now about 7.6% I think, though I haven't been testing for several months (bad diabetic! don't do this at home!). I've been using an insulin pump for about 10 years now - it makes travel easier, and I don't have as many dangerous low blood sugars at night; however, it did not transform me into a better diabetic.
Since everything that can go wrong for anyone medically gets worse and more complicated if you have diabetes, it makes sense to attach this head on right now. I had a great visit with the Diabetes Angel/Educator last week and she started with some simple stuff:
- get 10 minutes of activity after every meal. I don't have a regular exercise routine at the moment and this would start something - plus doing it right after a meal is a small time commitment and will help with the glucose level spiking after eating.
- add some protein to my breakfast. She suggested nuts, and then I said I used to do that but I was afraid they were making me fat. As soon as I said it, it sounded ridiculous - right? A few almonds on my high-fiber cereal? sheesh...I'll get to weight issues another time.
- reconnect with my girlfriends. I am such a terrible friend! Actually I'm a good friend in many ways, but I am neglectful of nurturing those relationships. And it's not good for me.
That was really it - we talked about CGM (continuous glucose monitoring) which I started up again last week so that I can get more data to tie in with my food and the normal circadian rhythms of metabolism. I did the download of my overbusy stressful life, and cried a lot for no apparent reason other than just releasing some of that anxiety out of my body. We talked about peri-menopause and the challenge that is starting to pose with the random hormone levels which affect insulin resistence, mood, ability to tell if you are sweating due to low blood sugar or is this a hot flash? All that fun stuff. We talked about getting more accurate carb counting incorporated into my insulin bolus decisions - so dig out those books and such...
But I'm feeling more in control already, and hopeful about hooking up with someone pragmatic and supportive who can help shepherd in my blood sugars to a goal of first 7% A1C, then if I'm not getting too many hypoglycemic episodes, we'll go for 6.5% - I guess as close to 6% as possible without having too many low blood sugars because the dangers of the lows are not worth the extra tightness in control.
I'll have my new endocrinologist team member in December, and by then I'll have a good idea where my gaps still are - it's always nice to show up to a new doctor for the first time when you don't feel like crap. That hardly ever happens.
Saturday, October 29, 2011
Chapter 2: Building your Medical Team
Here is the deal - I need a support group of doctors, experts, and also loved ones to get back on track and stay there. Let's start with the basic core medical team:
- Internal Medicine - the doc you see for regular checkups, when you have some infection or other illness, the one who writes most if not all you prescriptions, and gets copied on stuff from the specialists. I have a relatively new IM doc because my last one moved away/retired. Before that my endocrinologist was also my IM doc, but he cut that part out of his practice several years ago to focus on endo stuff. My IM is quite young, sits in the exam room with a laptop taking notes rather than on a chart, and I think that I like her pretty well. And she's on-board with this team approach. So I can check this position as filled.
- Endocrinologist - if you have type 1 diabetes you need an endocrinologist to manage that specific complex part of your medical needs. I've had the same guy for something like 25 years. I really like him as a person, but we need a divorce. He's probably going to retire at some point anyway, he doesn't know my new IM doc, and he definitely does everything on paper in my file that is so thick that his staff get carpal tunnel carrying it around. I have an appointment set up with a new Endocrinologist who is in the same practice as my IM. I hope I like her.
- OB/Gyn - if you are a girl, you need one of these to deal with all your girlie things. I'm really happy with the one I have but as I'm getting older and facing peri-menopause it will be important to loop her up with my IM too.
- Dentist - duh. We all need them.
Next level are the specialists who I hope I only need to see once in awhile:
- Gastroenterologist - as you can see in my last post, I need one of these. I have an appointment set up with a guy down the hall from my IM and new Endo. I hope I like him.
- Diabetes Educator - I think if you have diabetes, you should spend some time with one of these people in addition to your endocrinologist. In my experience they are more sensitive to the fact that diabetes is challenging and it's hard to be perfect all the time. I already have started going (again) to the Diabetes Ed center at Alta Bates. I love them there. Mr. Wonderful calls them the "Diabetes Angels". I was there yesterday and it's still true. But I'll save the specifics on that for another post.
- Hand Specialist - this one I need to get soon. I've been working on it but I want a specific, fairly conservative approach to my Dupuytren's. Anyway, this is critical to take care of ASAP.
- Optometrist/Ophthalmologist - if you have type 1 diabetes, you need to be checked annually for any retinopathy. Plus I'm getting old and need my progressive lenses updated once in awhile. I'm happy with the one I have.
- Pulmonary specialist - just to check on my sarcoid once in awhile to make sure it isn't scarring up even more of my lung and bronchial passages. meh. I don't even remember who I saw last time, but my sarcoid appears to be inactive at the moment so we'll just leave that for the moment.
- Dermatologist - I haven't been to one yet, but I'm fair skinned and spotty so should probably get a once over for any possible skin malignancies. Maybe I can get something done about my spotty old face too (heh).
What about the non-medical people in your life? I have great support from Mr. Wonderful and Teen Wonder, though when I am not well it puts a huge strain on the family eco-system. The other day I lamented that Mr. Wonderful and Wild Thing were supposed to put up the Halloween decorations I'd dragged out of storage and bought from the Halloween store. Teen Wonder remarked "I don't know why you're surprised. We can't do anything without you." That's an over exaggeration (teens!) - but probably partly true. My mom is great too - she'll fly down in a moment's notice if needed, and has more than once starting with when Teen Wonder was born 6.5 weeks early.
One of the instructions from my Diabetes Angel yesterday was to reconnect with my girlfriends. I have 2-3 really good ones but I haven't been keeping up with them and I need to fix that.
Anything I've forgotten for a critical team? I'm sure I'll think of others...
When you are a scientist, you probably self-diagnose too much. But...
As I'm a curious person in search of answers, I may have to add another diagnosis to my list - pending a visit with a new gastroenteroloist next month. It's called "Cyclic Vomiting Syndrome" - used to be considered only a pediatric problem, but now increasingly, adults are being diagnosed as well. Since I have some gastroparesis, it may be that I'll never get diagnosed with this particular title. But it is extremely interesting to me that this syndrome is tightly linked with migraine.
Here is one of the more informative links: http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/
And here's the first thing they say:
I also get migraines, and when I was in grad school I suffered from cluster headaches seasonally for about 3 years. They stopped after I had Teen Wonder, which was something the headache specialist said may happen since those headaches appear to be related to hormones (happen mostly in men...)
My mom gets migraines too. Did you even know there was such a thing as a stomach migraine? I didn't.
What can trigger these episodes? Well it varies...
Here is one of the more informative links: http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/
And here's the first thing they say:
What is cyclic vomiting syndrome (CVS)?
CVS is characterized by episodes or cycles of severe nausea and vomiting that last for hours, or even days, that alternate with intervals with no symptoms. Although originally thought to be a pediatric disease, CVS occurs in all age groups. Medical researchers believe CVS and migraine headaches are related (see CVS and Migraine).
I also get migraines, and when I was in grad school I suffered from cluster headaches seasonally for about 3 years. They stopped after I had Teen Wonder, which was something the headache specialist said may happen since those headaches appear to be related to hormones (happen mostly in men...)
My mom gets migraines too. Did you even know there was such a thing as a stomach migraine? I didn't.
What can trigger these episodes? Well it varies...
What triggers CVS?
Many people can identify a specific condition or event that triggered an episode, such as an infection. Common triggers in children include emotional stress and excitement. Anxiety and panic attacks are more common triggers in adults. Colds, allergies, sinus problems, and the flu can also set off episodes in some people.
Other reported triggers include eating certain foods such as chocolate or cheese, eating too much, or eating just before going to bed. Hot weather, physical exhaustion, menstruation, and motion sickness can also trigger episodes.
But I can tell you that I respond well to Ativan (anti-anxiety) when I start to feel like I might be getting nauseous. This last time I had a fever the day before it happened so maybe viral something or other. And the one in December was preceded by a late night of cheese fondue and white wine overindulgence.
I've had shorter episodes many times from over exhaustion (lack of sleep, often due to jet lag), motion sickness, and also really bad headaches.
Anyway, the good news is that treatment and prevention that are recommended are the things I'm doing now. But sometimes an anti-migraine prophylactic medication can also help - not sure what those are but I will ask my new doctor about it.
Monday, October 24, 2011
There will be celebration breaks in Janet's Self Help Book
The weekend was a little grueling. Not really a wise move after my extended illness. Mother would not have approved. But Teen Wonder was admitted to Humboldt State on Early Admission Day,and it was a fun day - for her back up school it is still a good fit for her. It's a 6 hour drive away, so we flew on miles and rented a car. It's hard to drive on some of these stomach meds so I had to wing it a bit. We're home safe.
She's happy.
I felt the sunshine on my cheek this afternoon and stopped to just breath and enjoy the moment of peace. A real feeling of peace no matter how short.
I let tears come over me on my pillow next.Just tears of release. nothing more
She's happy.
I felt the sunshine on my cheek this afternoon and stopped to just breath and enjoy the moment of peace. A real feeling of peace no matter how short.
I let tears come over me on my pillow next.Just tears of release. nothing more
Friday, October 21, 2011
Chapter 1: Taking Stock
Hehe. I envy you simple people with only 2-4 maladies and specialists to deal with. Just kidding - there are so many people with bigger problems than me I shouldn't even joke about it.
I do have a laundry list though - ancient history ones not included! I suppose if you don’t have many challenges of this sort to work with , then this blog won’t be of interest to you (yet).
Let’s start with known my own diagnoses and current status
Diagnosis | Current status | Trend | Treatment |
IDDM | Control Fair | Stable | Insulin pump |
Hypertension | Good control | Stable | Lisinoprinil |
Depression | Pretty good | Stable | Welbutrin |
Gastroparesis | Not good | Stabilizing | Zofran, Ativan, Erythromycin |
Dupuytren’s | Not good | Worsening | None so far |
Chronic Sarcoid | inactive | Stable | None so far |
Hashimoto’s Thyroiditis | Inactive | Stable | None so far |
Don’t worry, if I forget any, they’ll come up I’m sure.
You may think that a list of symptoms is where I’ll go next, but I’m sick of sticking bandaids on symptoms, so I’m going instead to make an attempt at the entire me. Which means more than a list of inter-related maladies.
And I didn’t even count the basic age (and vanity) ones I’d like to ultimately include – because it is too easy to start there and not dig deeper from my experience. Perfect example? Lose some weight OR exercise regularlarly OR control bG, but to do all at once seems impossible. This can not be impossible people!! (phew) But it is an overwhelming amount of work when you’ve got a full time job and 2 kids. That’s a given. We WILL get back to age and vanity later. But just for the completeness of taking stock here are the vanities.
Weight | Slightly over | Trending to worse | Weight watchers |
Exercise/Fitness | Out of shape | Stable | Ad hoc spasticitiy |
Skin (might have to bump up to medical category due to risk) | Spotty, saggy | Who knows | Expensive creams and lotions! |
Other conspicuous absence? Depending on you practices or faith (or both or neither), I haven’t included the spiritual and emotional side of the self-help work needed by moi. Probably I should deal with that before age and vanity, but I guess it all depends how you look at it. Many would say that we start here and work from that place. I won't argue with enlightened people, because what do I know? But for me, I'm still smarting from some specific times when I felt alone and no answer from the wilderness - I need to prepare myself better first. On the other hand, I feel like CS Lewis in that I still pray all the time because I have no other choice. I'm helpless. I know it won't change God.
aherm moving along to something no quite so depthly, here is my initial stocklist for this area.
Grounded Sense of Self | Not good | Worsening | None so far |
Spiritual Connection | Medium | Stable | CEC, prayer |
Community Connection | Medium | Stable | Volunteer, interact |
Introduction:
Coming to the end of yet another bout of gastrointestinal ugliness lasting over a week, it’s time to take stock. I’ve been pushing too hard for too long, both physically and emotionally and I am slowly killing myself. For so long now, diabetes has been playing second or 3rd or even 4th fiddle to so many other pressing concerns. Job, travel for job, Teen Wonder, Wild Thing – such beautiful sensitive children, and they need their mom real-time. Mu Wonderful? Even he takes precedence over my heath because without him sometimes feel I would wither like a dead flower anyway. That’s a pretty lost and dependence feeling. That doesn’t feel like me at all.
My hobbies (see other blog) are crammed in there and the little time I have for them serves as a respite for me. But even there the priorities aren't right. I need to take care of my body in a more holistic way. I've told a couple of only my closest friends (because who else would care) how detached I can become from my body especially during a long illness like this, but even just day to day so that I can "BE" the role I want for that day rather than the diabetic, health-challenge person pretending to be that role. I still test my blood sugars, make adjustments to insulin, take pills on time, etc. But it is all on autopilot and not with any presence of mind to stop and think - "hey, these numbers really stink last couple of days! What should I do?". And when it comes to my stomach I'm always on triage mode when I could be more proactive more often.
What to do? Quit my job? Well, let's just stop for a moment to note that we couldn't pay our mortgage without my job, so whole lof of other problems arise from this line of thinking. BUT! Would that really be what makes a difference and magically fix everthing? Maybe with all the time I’d have I could really monitor sugars the way I should, exercise each day, not self-medicate at night with another glass of wine. Sure. But that isn’t the life I have. I love my family and need to work with more discipline in the time constraints I do have.
And with some kindness to myself. With is normally lacking.
Oh and a personal assistant, trainer, and chef would be fabulous while we're asking for miracles. But then we are back to the money thing again...boo
This blog is a lot more personal than I've ever been comfortable with. Hopefully I'll walk the line just this side of TMI because I know it can get tricky. I am not going to get into my complex medical history here unless a lot of people keep asking the same questions. (all, um, zero of you)
Also, I'm trying to organize a real approach to how a person without Kaiser insurance who has a lot of different special needs can build a team - a network of medical competencies (either the people themselves, or the information organization). We are facing similar issues trying to pull together a team to help Wild Thing do his best, and it's been pretty painful on our own. Is it possible to make a roadmap? a personal "Self-help book"?
This blog is a lot more personal than I've ever been comfortable with. Hopefully I'll walk the line just this side of TMI because I know it can get tricky. I am not going to get into my complex medical history here unless a lot of people keep asking the same questions. (all, um, zero of you)
Also, I'm trying to organize a real approach to how a person without Kaiser insurance who has a lot of different special needs can build a team - a network of medical competencies (either the people themselves, or the information organization). We are facing similar issues trying to pull together a team to help Wild Thing do his best, and it's been pretty painful on our own. Is it possible to make a roadmap? a personal "Self-help book"?
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