Actual diagnosis, for reals
Feb. 29th, 2012 11:59 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
dryadgrlIt's been a long time since I talked about my illness stuff in any detail.
I'm re-exploring this stuff as I'm more and more well.
The very short version is what we now think happened was I got pregnancy-onset hypothyroidism in 1997 During pregnancy with my awesome-amazing son. Hypothyroidism has a lot of possible symptoms but they include depression, anxiety, weight gain and/or difficulty losing weight, adrenal fatigue and adrenal related stuff, and exhaustion (and a whole host of other things including hormonal issues and nutrient deficiencies). There are something like 22 different kinds of thyroid things and that's compounded this issue.
I gained (a lot of) weight during pregnancy but it didn't stop when I had the baby. At first I thought it could have just been that car accident when I was pregnant and couldn't do very much for several months. But even once I could walk and so on, I had a difficult time with my weight and by then I started the slide into depression that got progressively worse for about 8 years (which, by the way, is a damn long time) and culiminated in a round of being hopsitalized for 9 days and a several year battle with very severe depression, anxiety and complusive suicidality. Now I know that this was a result of thyroid issues that deteriorated to include nutrient deficiencies as a result of absorption issues, adrenal fatigue, major (severe) depression and an anxiety disorder as well as a whole lot of metabolic issues.
Doctors were reluctant to test me for thyroid stuff instead telling me to exercise and take anti-depressants because I was "just fat" among other completely degrading crap. At one point when I was telling a neurologist about my migraines he said, "Well you're fat, what did you expect?" I said, "I"ve been fat for 10 years, I've had migraines 6 months." Needless to say I never went back and never saw another neurologist.
The more research I did, the more it was clear to me that depression was a symptom of something, not a cause. But, well, no one believed me. I mean fat people are lazy, unmotivated, stupid and deserve what they get, right?
Wrong.
Your thyroid control metabolism. Yes that's about weight, but it's also about nutrient absorption and that effects every single body system without exception from blood and brain function to growth to bones and muscles, etc. So no matter what I ate, my body and brain were starving which is also part of biology of depression and anxiety (the starving peice is also about cortisol and weight, this is an integrated system after all). The next system to get stressed once there is thyroid stress is adrenals and so even minor stresses would send me over the edge into very dark places. And so on. It's a very dark, difficult downward spiral into hell.
And once you get there, it's no fun either.
The hospitalization came in 2005 when my girlfriend couldn't take care of me any more. She had taken me with her for the weekend and I just couldn't cope and spent all of my time crying or sleeping or in the depths of despair. There was really nothing she could do for me. It was really the right thing and I'm very grateful for her support. She came and visited me every day and in fact it made our relationship much stronger for a time. It's actually amazing that she ever found me loveable. I was in so much pain and I couldn't imagine being lovable or loved.
Two very different things happened. One was a series of conversations with doctors in hospital who basically told me that I needed to take anti-dpressents and that I would never, ever be well. Ever. They said that my thyroid numbers were a little low, but they thought I was bi-polar and the medical records are all about my weight ("morbidly obese") and the depression and not one word about thyroid stuff or other possibilities. They told me to that I would never work again and that I should be prepared to be disabled the rest of my life.
They psychward is a terrible place. It's a lot about over-medicating people until they drool on themselves so that they don't "cause harm." It's full of people who are there to stay out of other much more terrible places or to avoid extreme fates. Yes sometimes jail/prison, but group homes and being "cared for" by terrible people and crazy abusive stories. I don't recommend it.
Though I will say it made my life look very appealing and very... sane in comparison. (Saying my life was "sane" at the time is like saying that being stretched on a rack is "uncomfortable.")
The other thing was late one night, I was sitting at the end of the hallway in the psychward, a few days in to my "stay" and a nurse came and sat down next to me. We talked for quite some time and she said that I didn't belong there. She said that a lot of these people will come back over and over but she'd be willing to bet she'd never see me again. She said that I had tons of support - people came to visit me every day (not my family, but my girlfriend and my lover and friends and my son). She also said that people really looked up to me because they knew too. And there's some truth to the idea that in the evenings we all (the inmates) started gathering to do art together which started because I just couldn't take one more evening alone crying.
But it's a bizarre thing to be the most sane person in the psychward. When I was at the lowest I thought it was possible to go, I was still not a paranoid delusional or hearing voices or afraid that people in my life were trying to kill me. One woman was convinced that the staff was trying to rape her with various things every night. But she said it was still better than the group home.
This weekend in yet another cleaning frenzy, I just let go of art the one of the women made for me and stuff that I made as well. I held on to it for 6 years. Because the crazy people mostly stick together. Mostly.
Anyway, this is all a lead up to say that I let my current healer do blood tests on me, which I haven't let anyone do in several years because I was tired of the crap and the unwillingness to do the right tests (not just TSH, but T3 and T4 please!) and not wanting to get stuck with needles in order to talk to people who see me as dumb or useless or stupid. Fuck them. I'm not putting myself into the hands of people who don't deserve my trust.
So I did it. I got the tests and I filled out a new round of assessment paperwork for my current doc and let her send it all out for analysis.
And it came back in big bold letters diagnosis: primary hypothroid.
We talked about it. We agreed on a path forward. She was impressed about the cleaning frenzy and said it was an important part of getting well and she and I both got teary-eyed about taking the next step.
She gave me new medicines.
She gave me medicine for the thyroid issue that I have been diagnosed with.
I mean we know I have thyroid issues so I've been on very low doses of iodine and some other supplements and not a lot else because I couldn't deal with the testing. But the boyfriend was a rock star and talked me through the whole thing, even the bits where I was grumpy waiting for the testing.
It's such a relief to be working with a healer who believes me, who not only listened to me say that I didn't think anti-depressants were the way to go but agreed with me and helped me treat the symptoms without pharmaceuticals. It's amazing to look back and see how different my life is because one person believed in me.
In truth she believed in me because Tia believed in me. So that's two people.
That was Saturday. I've been on the meds for 5 days and things are shifting already. I can feel eating patterns shifting - I am inclined and available to cook more. I'm HUNGRY! Several times a day! Every day! (I started getting hungry regularly in August, but this several times a day thing is so novel!) And I'm eating several times a day! When I'm hungry!
(For those that have always had a body that spoke to them about hunger, the broken part was that I was rarely hungry. I was either not interested in food or starving and nauseous and weak. There was no in between. So my blood sugar was always crashed out, my adrenals were always stressed out, my mood was always fucked, always. For years.)
That means I have more energy. Over the last few weeks I'm much more available in some way that my son is responding to. I have only been short with him twice in the last few weeks which feels really good. We have a great relationship, but it's hard on him when I'm sick or unavailable.
In retrospect there's been big change this last 7 months. Since I quit IPC, my anxiety went way down. In fact I had my first anxiety attack in months today (when I had to go see those folks in court).
I found out I am allergic to nightshades and stopped eating those and things have really shifted. Then there's the boyfriend and my capacity to be in relationship. I can do it, is the short version. I can show up for people and for myself in some kind of weirdly consistent way. I acknowledge my own boundaries and don't routinely force past them without noticing. Now at least I see them as they go rushing by. And often stop well in advance of a limit, especially a physical one.
I am no longer in every day chronic pain.
Just so that you get it: I am no longer in every day chronic pain.
I've been listening to my body more and more and just doing less. And doing less but being effective at those things and even happy. I've been pretty happy most of the time for most of a year. I have capacity for friendships and relationships in ways that I haven't in forever.
Somehow I decided that it would all be ok and have been working, but less, and not stressing about money, even though there's not much coming in. I'm just less worried... I think this is how it is for healthy people. They can still function even if money is tight and they don't spend all of their time freaking out and being sick and sleeping or staring at the ceiling about this issue or that thing.
I guess that's why they call it functional. Because they function. I think I get it now.
I haven't been this healthy in a long time. Probably since before Kiddo was born. I used to think... I thought I was a person who loved people and had lots of friends. But I could not be close to many people while I was so sick even though I deeply needed them. As I've gotten well, there are more and more amazing people in my life. I'm both grateful and sad about that. I wish I'd been able to have them all when I thought I was dying, but I'm so glad they are here now.
One thing that I've learned about healing is that it comes in waves. Some times big sweeping waves and some times small, nearly imperceptible, ones. But they all change my life. This one feels big between the house cleaning and getting back on the 'medication and treatment' horse in a new way. I can really see a path forward to consistent wellness from here.
I am so relieved to finally have a clear, concise, written diagnosis. No more screwing around about it. I have a doctor that I trust to help me and the help is happening. It's taken me 3 years to relax into the idea that this is a long-term relationship. That she will keep treating me even though I fall down and can't cope sometimes and things don't work and I don't know what to do about that sometimes. She just keeps helping me up, brushing me off, and loving me. I don't know what I would do without her.
And the idea that my body could really work well and not betray me or fall apart at every turn is amazing. I'm so excited about that.
Oh and I've started taking a belly dancing class. I haven't taken a dance class in 18 years.
I'm re-exploring this stuff as I'm more and more well.
The very short version is what we now think happened was I got pregnancy-onset hypothyroidism in 1997 During pregnancy with my awesome-amazing son. Hypothyroidism has a lot of possible symptoms but they include depression, anxiety, weight gain and/or difficulty losing weight, adrenal fatigue and adrenal related stuff, and exhaustion (and a whole host of other things including hormonal issues and nutrient deficiencies). There are something like 22 different kinds of thyroid things and that's compounded this issue.
I gained (a lot of) weight during pregnancy but it didn't stop when I had the baby. At first I thought it could have just been that car accident when I was pregnant and couldn't do very much for several months. But even once I could walk and so on, I had a difficult time with my weight and by then I started the slide into depression that got progressively worse for about 8 years (which, by the way, is a damn long time) and culiminated in a round of being hopsitalized for 9 days and a several year battle with very severe depression, anxiety and complusive suicidality. Now I know that this was a result of thyroid issues that deteriorated to include nutrient deficiencies as a result of absorption issues, adrenal fatigue, major (severe) depression and an anxiety disorder as well as a whole lot of metabolic issues.
Doctors were reluctant to test me for thyroid stuff instead telling me to exercise and take anti-depressants because I was "just fat" among other completely degrading crap. At one point when I was telling a neurologist about my migraines he said, "Well you're fat, what did you expect?" I said, "I"ve been fat for 10 years, I've had migraines 6 months." Needless to say I never went back and never saw another neurologist.
The more research I did, the more it was clear to me that depression was a symptom of something, not a cause. But, well, no one believed me. I mean fat people are lazy, unmotivated, stupid and deserve what they get, right?
Wrong.
Your thyroid control metabolism. Yes that's about weight, but it's also about nutrient absorption and that effects every single body system without exception from blood and brain function to growth to bones and muscles, etc. So no matter what I ate, my body and brain were starving which is also part of biology of depression and anxiety (the starving peice is also about cortisol and weight, this is an integrated system after all). The next system to get stressed once there is thyroid stress is adrenals and so even minor stresses would send me over the edge into very dark places. And so on. It's a very dark, difficult downward spiral into hell.
And once you get there, it's no fun either.
The hospitalization came in 2005 when my girlfriend couldn't take care of me any more. She had taken me with her for the weekend and I just couldn't cope and spent all of my time crying or sleeping or in the depths of despair. There was really nothing she could do for me. It was really the right thing and I'm very grateful for her support. She came and visited me every day and in fact it made our relationship much stronger for a time. It's actually amazing that she ever found me loveable. I was in so much pain and I couldn't imagine being lovable or loved.
Two very different things happened. One was a series of conversations with doctors in hospital who basically told me that I needed to take anti-dpressents and that I would never, ever be well. Ever. They said that my thyroid numbers were a little low, but they thought I was bi-polar and the medical records are all about my weight ("morbidly obese") and the depression and not one word about thyroid stuff or other possibilities. They told me to that I would never work again and that I should be prepared to be disabled the rest of my life.
They psychward is a terrible place. It's a lot about over-medicating people until they drool on themselves so that they don't "cause harm." It's full of people who are there to stay out of other much more terrible places or to avoid extreme fates. Yes sometimes jail/prison, but group homes and being "cared for" by terrible people and crazy abusive stories. I don't recommend it.
Though I will say it made my life look very appealing and very... sane in comparison. (Saying my life was "sane" at the time is like saying that being stretched on a rack is "uncomfortable.")
The other thing was late one night, I was sitting at the end of the hallway in the psychward, a few days in to my "stay" and a nurse came and sat down next to me. We talked for quite some time and she said that I didn't belong there. She said that a lot of these people will come back over and over but she'd be willing to bet she'd never see me again. She said that I had tons of support - people came to visit me every day (not my family, but my girlfriend and my lover and friends and my son). She also said that people really looked up to me because they knew too. And there's some truth to the idea that in the evenings we all (the inmates) started gathering to do art together which started because I just couldn't take one more evening alone crying.
But it's a bizarre thing to be the most sane person in the psychward. When I was at the lowest I thought it was possible to go, I was still not a paranoid delusional or hearing voices or afraid that people in my life were trying to kill me. One woman was convinced that the staff was trying to rape her with various things every night. But she said it was still better than the group home.
This weekend in yet another cleaning frenzy, I just let go of art the one of the women made for me and stuff that I made as well. I held on to it for 6 years. Because the crazy people mostly stick together. Mostly.
Anyway, this is all a lead up to say that I let my current healer do blood tests on me, which I haven't let anyone do in several years because I was tired of the crap and the unwillingness to do the right tests (not just TSH, but T3 and T4 please!) and not wanting to get stuck with needles in order to talk to people who see me as dumb or useless or stupid. Fuck them. I'm not putting myself into the hands of people who don't deserve my trust.
So I did it. I got the tests and I filled out a new round of assessment paperwork for my current doc and let her send it all out for analysis.
And it came back in big bold letters diagnosis: primary hypothroid.
We talked about it. We agreed on a path forward. She was impressed about the cleaning frenzy and said it was an important part of getting well and she and I both got teary-eyed about taking the next step.
She gave me new medicines.
She gave me medicine for the thyroid issue that I have been diagnosed with.
I mean we know I have thyroid issues so I've been on very low doses of iodine and some other supplements and not a lot else because I couldn't deal with the testing. But the boyfriend was a rock star and talked me through the whole thing, even the bits where I was grumpy waiting for the testing.
It's such a relief to be working with a healer who believes me, who not only listened to me say that I didn't think anti-depressants were the way to go but agreed with me and helped me treat the symptoms without pharmaceuticals. It's amazing to look back and see how different my life is because one person believed in me.
In truth she believed in me because Tia believed in me. So that's two people.
That was Saturday. I've been on the meds for 5 days and things are shifting already. I can feel eating patterns shifting - I am inclined and available to cook more. I'm HUNGRY! Several times a day! Every day! (I started getting hungry regularly in August, but this several times a day thing is so novel!) And I'm eating several times a day! When I'm hungry!
(For those that have always had a body that spoke to them about hunger, the broken part was that I was rarely hungry. I was either not interested in food or starving and nauseous and weak. There was no in between. So my blood sugar was always crashed out, my adrenals were always stressed out, my mood was always fucked, always. For years.)
That means I have more energy. Over the last few weeks I'm much more available in some way that my son is responding to. I have only been short with him twice in the last few weeks which feels really good. We have a great relationship, but it's hard on him when I'm sick or unavailable.
In retrospect there's been big change this last 7 months. Since I quit IPC, my anxiety went way down. In fact I had my first anxiety attack in months today (when I had to go see those folks in court).
I found out I am allergic to nightshades and stopped eating those and things have really shifted. Then there's the boyfriend and my capacity to be in relationship. I can do it, is the short version. I can show up for people and for myself in some kind of weirdly consistent way. I acknowledge my own boundaries and don't routinely force past them without noticing. Now at least I see them as they go rushing by. And often stop well in advance of a limit, especially a physical one.
I am no longer in every day chronic pain.
Just so that you get it: I am no longer in every day chronic pain.
I've been listening to my body more and more and just doing less. And doing less but being effective at those things and even happy. I've been pretty happy most of the time for most of a year. I have capacity for friendships and relationships in ways that I haven't in forever.
Somehow I decided that it would all be ok and have been working, but less, and not stressing about money, even though there's not much coming in. I'm just less worried... I think this is how it is for healthy people. They can still function even if money is tight and they don't spend all of their time freaking out and being sick and sleeping or staring at the ceiling about this issue or that thing.
I guess that's why they call it functional. Because they function. I think I get it now.
I haven't been this healthy in a long time. Probably since before Kiddo was born. I used to think... I thought I was a person who loved people and had lots of friends. But I could not be close to many people while I was so sick even though I deeply needed them. As I've gotten well, there are more and more amazing people in my life. I'm both grateful and sad about that. I wish I'd been able to have them all when I thought I was dying, but I'm so glad they are here now.
One thing that I've learned about healing is that it comes in waves. Some times big sweeping waves and some times small, nearly imperceptible, ones. But they all change my life. This one feels big between the house cleaning and getting back on the 'medication and treatment' horse in a new way. I can really see a path forward to consistent wellness from here.
I am so relieved to finally have a clear, concise, written diagnosis. No more screwing around about it. I have a doctor that I trust to help me and the help is happening. It's taken me 3 years to relax into the idea that this is a long-term relationship. That she will keep treating me even though I fall down and can't cope sometimes and things don't work and I don't know what to do about that sometimes. She just keeps helping me up, brushing me off, and loving me. I don't know what I would do without her.
And the idea that my body could really work well and not betray me or fall apart at every turn is amazing. I'm so excited about that.
Oh and I've started taking a belly dancing class. I haven't taken a dance class in 18 years.
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no subject
Date: 2012-03-01 05:03 pm (UTC)It's a crying shame that your gem of a doctor is the exception to the medical establishment rather than the rule. I wonder if those other doctors realized that they were inadvertently violating the Hippocratic oath by dismissing your health concerns based on what they thought was wrong with you, rather than doing their jobs and running the tests you actually needed.
no subject
Date: 2012-03-01 06:59 pm (UTC)I've actually been getting very good care for nearly 4 years. But going into being sick took 8-10 years, coming out will take time too. There is no one pill that will fix it.
I don't know if they care honestly. The system is addicted to pill = fixed that I'm not sure that they really get the integrated systems approach and the need for viewing the whole rather than the parts. I'm incredibly lucky to have found my doc. I don't know what I would have done without her.
here's to health
Date: 2012-03-01 05:06 pm (UTC)my healing / health is going really well right now too...
five years ago with the food allergies
a year and a half ago when we figured out i didn't have enough stomach acid and enzymes to digest my food
3 months ago when i started getting serious about exercise
3 weeks ago when i started supplementing iron
1 week ago when i started supplementing calcium
probably in a couple of weeks i'll start supplementing for iodine...akien has just come up with a borderline hypothyroid diagnosis himself, and we attribute it to not using iodized salt anymore
i *much* prefer having sore muscles from exercise to chronic low level pain. the iron seems to be taming my immune responses to allergens. the calcium seems to be increasing my energy levels and concentration.
go go bellydancing!
Re: here's to health
Date: 2012-03-01 07:05 pm (UTC)I also take iron. Part of this last round of healing was that I had accidentally gone off of iron for 3 months and crashed out in September and we started this re-evaluation process. Iron = v good.
Iron is probably helping your blood and that support immune function. Have you tried zinc? In absorbable forms is super useful for immune function. When I'm on it, I'm sick a whole lot less.
Iodine is awesome. It does two things: detox and provide energy. When I first started taking it I made a huge jump in available energy.
I also find that taking a supplement opens up the next level of healing. So that sometimes means that it's 3 steps forward 1.5 steps back. If you notice new symptoms when you take something, be attentive to them. They are giving you good information.
And yeah belly dancing is awesome!