There are times when I am in a lot of pain that I am just lying in bed, wishing to disappear. Sometimes distraction helps. It has to be something that gets me out of my head, because my head is where it hurts. So sometimes soothing music helps. If it's not too bad, doing things like coloring or reading can help. I can't always do those. Sometimes I sleep. Sometimes I take medication to make me sleep. And sometimes I just lie there.
Oftentimes the thoughts that overcome me in these times are dark, lonely, and hopeless. It is so hard to get out of it. It becomes a mental battle just to drive some things out of my head. Sometimes having something else to focus on can help just a little. At some point in the last few years, I devised this little visualization exercise to give me something else to focus on sometimes. I don't always think of it. Sometimes it doesn't help. But it's one of the things I use to try to comfort myself, so I thought I'd share, just in case anyone else in a similar situation can find it helpful. Or maybe just writing it all out will be helpful to me. I don't know.
Here is the scenario: I am lying on a kind of bed, but it is low to the ground, kidney bean shaped, more like a nest or a pod than a bed. Maybe a cocoon. It is bluish white and made of soft fabric. It almost glows. And it is the perfect temperature. Sometimes I cover myself in a soft blanket, just enough. I'm in an empty room except for this nest. Lights are dim. Standing around the edge of the nest are beings that I think of as my protectors. They aren't really people. Just beings. They are dressed in white, but I never see their faces. All I know is that they are there to look over me while I rest and heal. They won't let anyone or anything come close to me that will hurt me in any way. They only look out for my best interest. I am safe, protected, warm. Beyond my protectors is a throng of people and they are all people that love me and care about me. This may seem presumptuous or cheesy, but in moments of severe pain, I need to remind myself that these people are there. They are there to surround me with love, nothing else. I look in their faces and I see people I know. My friends and family. My husband and children. There are also people I don't know, or don't recognize. Some of them are my ancestors that only wish me well. Some are people I have influenced that care about me but I don't know personally. They are all there. I look into each of their faces. I am known, understood, and loved beyond what I can understand.
They stand in silence and send me their thoughts of love and caring. Sometimes the protectors allow people to come stand at the edges of my pod and they hold my hand or touch my arm. Just to remind me they are there. There isn't anything they can do to help me. Nothing is needed. They just stay. Sometimes there is a ripple of negative energy in the throng of people standing by and there is something disruptive or contentious that happens. Conflict with any of these people. Anger. Blame. Frustration. Towards me or anyone else. The protectors know that now is not the time for me to deal with any of this and so they gently but firmly remove any of these people from my surroundings. Everything is done calmly and quietly. There is only peace. That is all that is allowed.
I cannot come to harm. I need only be still and wait. I soak in the love of those around me. They want me to be well. They understand that this is all I can do. They are there for me, just to be there. They want to be there.
And this is where I stay. In stillness and quiet. Calm. Peace. Cared for. Surrounded by love and caring. Sincerity. Safety. I sink softly into this feeling.
And sometimes this helps lift my brain out of the pain just a little. Sometimes.
Showing posts with label depression. Show all posts
Showing posts with label depression. Show all posts
Sunday, November 2, 2014
Tuesday, July 15, 2014
the worst anniversary ever {{warning: long post!}}
I am one who keeps track of things. It's in my nature. I have a planner (where I write more things down after the fact than I do beforehand), and a journal, and facebook, Instagram, and this blog. All of which serve me well in keeping track of dates, and things that happened, and my feelings, and, as it so happens now, my pain journey. It's part of who I am. So, it comes as no surprise that I know when my pain started. And the anniversary of that time is this week. Three years.
Actually, it's funny because I don't have the "actual date" the pain started, because it started as an ear ache/jaw pain that I thought might be an ear infection or a tooth problem. But I have the dates of my first Dr appts (Aug 3 I saw my dentist and Aug 9 I saw my reg Dr). And I made a note in my planner on one day that I had had the ear pain for about 4 weeks at that point, which backtracks to this week. So, yeah. Happy Anniversary to me. Worst anniversary date ever.
But in recognition of this, I thought I'd do a few little updates and blog posts that have been in my brain for a really long time.
First of all, how things stand now: Well. Hmm. Let's go back a bit. In November I had the 22 day migraine when my current neurologist refused to give me any help to abort it ("just keep taking what you're on" she said). That wasn't acceptable to me, since I'd already been to the urgent care and ER in desperation for the pain. Not offering me any help to get rid of this pain was not an option. I needed a new plan. And fast. This led me to rallying all my sources to find new Drs or ideas. In Dec I started seeing an integrative medicine Dr who I was told was good at helping migraines and getting to the root of problems. I saw a chiropractor (who honestly scared me so much with his technique, I almost cried, and he asked me if I was ok.... I wasn't really a fan of that - and although I scheduled a whole month of follow-ups, in the madness of Dec, I cancelled all of them and never went back). And I found a new neurologist.
The integrative medicine Dr did a bunch of blood work that led me to a few ideas to try. I started supplementing Vit D, because my levels were very low. I tried a progesterone supplement, just because he said a lot of women feel better with a little more, even though my levels were ok (this may have contributed to the breast discharge problem that I subsequently had, although I've been off of it ever since and still having that other problem. So whatever. Who knows, but I won't take the progesterone anymore just in case.) And my blood work showed IgG sensitivities to milk, wheat, eggs and gluten. I also tested high for an inflammation marker. So, I went off of all of those foods. The hope was that by avoiding the things that my body was sensitive to, it might reduce inflammation in all of my body, which might be contributing to my pain, or depression, or energy levels, or something. Ok. So we tried it.
My new neurologist was a headache and sleep specialist and had also given me a low-tyramine migraine diet to try. So, that's when I went off of just about every tasty food on the planet (between the migraine diet and the IgG sensitivity foods I was avoiding). This was not a good time. I was lethargic, depressed, and basically slept all day and stopped eating. I didn't have the energy to find things that I could eat and I just didn't feel like bothering with any of it. Plus my pain was terrible. Pain can also be exacerbated by emotions too, so it's just a terrible cycle. It's impossible to tease out all the cause and effects, but I sure didn't feel any better.
In Jan, I also had an overnight sleep study done to rule out apnea, ordered by my new neurologist. I barely slept at all that night, but somehow they collected enough data to still consider it effective. And I got the report and it basically said I DO NOT HAVE SLEEP APNEA. There is a rating score they use to differentiate between normal breathing, mild apnea, moderate apnea, and severe. I was in the normal range. But, the neuro still thought that apnea might be a cause (huh?!?) and that I should try a CPAP machine. Well, the machines are costly and not easy to sleep with, so I held off on that.
He recommended that I try Botox for the chronic migraine. It would take up to 4 treatments, 3 months apart, to know the full effect of how effective Botox would be for me. Everyone has a different response to it. Some people it helps right away, either with intensity or frequency of migraines, some people have an accumulative effect where they get more benefit with each treatment, and some people it doesn't help at all, or even makes them worse. He said it wasn't very painful, most people were fine, and that I wouldn't need the numbing cream that a lot of Drs use for it. LIES. hahah. It was terrible!! Probably the worst medical procedure I can ever recall since the terrible nerve block experience. I sobbed. He asked me if I was ok, and I said no not really. But what else could he do? The injection sites stung and ached and throbbed for weeks. This isn't a typical response. I had more migraine pain in those areas, when previously I didn't have any pain at all there. And my eyebrows became paralyzed - for the entire 3 months that the injection was "working". Oh and the best part?! He had told me there were NO SIDE EFFECTS. Riiiiiiigght. Of course I knew from my own research about all the possible side effects beforehand, but I was ticked that he said there weren't any, and I had decided it was worth at least a try to see if it would help me. I wasn't happy about any of this, and had decided there was no way I could do it again. Just. couldn't. Not worth it.
Sometime in all of this, I was also dealing with breast pain and discharge and having to undergo mammograms, ultrasounds and a ductogram, all of which were not very pleasant.
And the neuro had sent me to a neurotologist (kind of an ENT neuro), and an ophthalmologist. The neurotologist said I most likely had Menieres disease, due to some strange sound distortions I had had occasionally and very rare vertigo episodes years before, and I had very mild hearing loss. But my ear pain, he said, was most likely a nerve issue that the neurologist should help me with. Great. The ophthalmologist said I had very dry eyes and that could cause eye pain. Hmmm. He said I should do drops every couple hrs. But I kind of don't think my dry eyes could be causing the exploding type of eye pain that I experience. I cancelled my follow up there.
So, anyway... the neuro had me try a medicine to rule out Hemicrania Continua, a headache disorder that causes one sided head pain. The med caused half of my soft palate and throat to swell, making me gag, an allergic reaction. I saw a different Dr on short notice who told me I should stop taking it, of course, and prescribed a short term steroid. The steroid seemed to actually help my pain a little, but you usually can't stay on steroids long term. Interesting though.
The neurologist had also tried me on a couple different prescription NSAIDS, a beta-blocker, nausea med, and ear medicine, none of which really helped. He also gave me anxiety meds and a muscle relaxer, which I could take when the pain was bad just to help me zone out and not freak out. Also to help me sleep. That was probably the most help he ever gave me. After a few months being gluten-and-everything-else-free, I went back to the integrative medicine Dr for follow up. My Vit D levels had improved, the inflammation marker was down, and the IgG sensitivities were down but still not normal. Since he wasn't on my insurance and I was paying $200 a visit, we determined that I couldn't afford to keep seeing him. So he recommended I keep off the foods for a couple more months and if I still didn't see any improvement in anything, then it probably wasn't worth staying off the foods (hallelujah). Oh, somewhere in there I also tried taking a thyroid supplement. My levels were on the low side of normal. But I never noticed a difference being on that either, so I stopped. Didn't notice a bit of difference in my pain levels going back to eating normal food, but I did unfortunately gain back the weight I had lost when I wasn't eating. No surprise there.
And then, my neuro kept pushing me to get the CPAP. I explained my concerns in getting it (the cost - $400 out of pocket after our deductible has been met, the possibility of a face mask aggravating my face pain, the fact that I DON'T ACTUALLY HAVE SLEEP APNEA), but he was still very insistent that trying this might help me. He was also very disappointed that I wasn't willing to give Botox another try. Then he tried to tell me that maybe all of my pain was actually stemming from my depression, so he referred me to both a psychiatrist and a neuropsychologist. Hm. I knew my depression had been pretty bad so I felt ok about taking the referrals, since I clearly needed more help than he could give me. But I really didn't like that he wanted to attribute all my pain to my depression. Seriously.
I was seeing a counselor when my pain started and asked him about this, as this is often a question that comes up with chronic pain, and he very clearly explained to me that when pain is associated with depression it most often manifests itself in more vague ways: a dull headache, backache, stomachaches, etc. It doesn't usually follow the pattern of a specific disorder, like Trigeminal Neuralgia. So he didn't think that was causing anything. They might be feeding off each other, as emotion plays a very significant role in the perception of pain, but that would be the extent of it. Many many people with chronic pain get this kind of thing from Drs, mostly when the Dr has run out of ideas and is feeling out of their element. They don't know what else to do, this makes them feel incompetent, and they then blame it on psychology. Most people with pain feel invalidated, accused, and discouraged in this situation. I am not an exception. This, along with his insistence on Botox and CPAP (notably, his areas of expertise), convinced me that I was done with this Dr. He had nothing else in his tricks of the trade to offer me. He didn't know what else to do.
I saw the psychiatrist, who tried me on another anticonvulsant I hadn't tried yet. I had a potentially life threatening reaction, which sent me to the ER. She wanted me to try some antipsychotics to help with my sleep, mostly. I didn't feel good about that. She agreed that getting off the migraine preventative med (also an anticonvulsant) made sense, since I'd been on it for over a year and never felt like it helped at all. The neuro kept telling me my pain would probably be worse without it and didn't recommend getting off. But I followed the psychiatrist's recommended tapering schedule and now I'm off, with no change in my pain, either better or worse. She also increased my antidepressant, but then I started having high blood pressure which can happen from this medication. I had my blood pressure taken in different places and situations (even knocked out in the ER) and it was always high. So, since it was no longer working much for me, it could be causing me high blood pressure (which can happen at any dose), and there's always the slight possibility that my pain could have been caused by it (who knows), we decided to start weaning off of that too. That is a very long slow tapering process, since it is known for having nasty side effects getting of it (one of the worst for antidepressants). The entire process would take a few months, and I'm still in the midst of that. But she told me to call her anytime I'm feeling desperate, or have questions or anything and she seemed like she really wanted to find something to help, and that was encouraging.
I also went and saw the psychologist. She works closely with the neurologist, he referring patients to her, and she likewise. I was nervous about what he might have told her about me, with my stubbornness in refusing the CPAP and Botox, and how he thought my pain was caused by my depression, so perhaps I was a little defensive from the start. I didn't feel comfortable with how my information might be passed back and forth between them and I wasn't sure how it would work, since I had already come to the conclusion that the neuro had basically given up on helping me (our last visit, he told me to come back when I wanted to try the CPAP. Ummm, ok...). And there is also an element of rapport and feeling like someone is on your side. Like someone is listening and genuinely cares about YOUR experience. Having seen a number of psychologists/psychiatrists/counselors before, either for myself or my children, I kind of know how this works and how important this aspect is. Sometimes you just need someone you "click with" for it to work (also important with Drs, incidentally). But this lady.... she seemed kind, and she went through the stack of paperwork I had filled out and asked some relevant questions, but then she just went on and on about some pain she had (nothing at all like mine) and what had helped her, or her sister, or somebody, and have I tried essential oils, or acupuncture....? And I was taken aback a bit. During the visit, I just explained that yes I've tried oils and no I haven't tried acupuncture, but that I've tried a whole dang lot of things, and I was exhausted. My Dr had just basically given up on me. I had seen 22 Drs and health providers of different sorts over the last 2 1/2 yrs (to which she said, why do you think you've seen so many Drs?? in a tone that felt accusatory to me, like I'm just Dr shopping to find one that tells me what I want to hear. I felt I had to defend myself against my choices - not really how I want to spend my time). I've already heard about just about every treatment available, I have been through a lot of crap, and really, can someone just listen to me for once???? I paid $75 to see this woman, I was paying her (I thought) to listen to me, because if a psychologist won't listen to you, then tell me, who will?!?! But I didn't feel like she was listening. She didn't bother to ask me what treatments I had tried, before going on about her own things that helped her, and she hadn't even asked me about my pain enough to even understand it. How could she know what could help me if she hadn't even talked to me about what it was like? She recommended a book about managing chronic pain (which I now have from the library) and suggested I take an online inventory assessment-thing that would help me clarify my strengths and values, which she said is important to remember during pain. I did it, which I found fascinating but not particularly helpful or relevant to what I'm going through. I went back to her again, and we talked a little, but it was clear this wasn't a good fit. If nothing else, I need someone not so closely connected to the neurologist that was driving me crazy. We mutually agreed that I probably shouldn't continue coming back. So that was that.
So that's where I am. I've started getting these terrible insomnia episodes (where I sometimes never fall asleep at all, all night long) that don't make a lot of sense to me. I've never struggled like this before. I don't know if it has anything to do with the medications I'm getting off of, or just my general anxiety levels, or my pain, or what. My pain seems about the same as it's always been, although it's really hard to evaluate that objectively. I sometimes don't get out of bed much for days at a time. I don't have a Dr to see currently. I'm just kind of in a holding pattern until I get off the antidepressant and then evaluate how I feel. There was also a very slight possibility that it could be contributing to the breast problem. So I'm waiting to do anything else about that (since it is ongoing) until I'm off of this too. It all just really stinks. Sometimes I am doing ok, sometimes I am just not.
And for three years now, that's how it's been. Every single day. Happy Anniversary.
Actually, it's funny because I don't have the "actual date" the pain started, because it started as an ear ache/jaw pain that I thought might be an ear infection or a tooth problem. But I have the dates of my first Dr appts (Aug 3 I saw my dentist and Aug 9 I saw my reg Dr). And I made a note in my planner on one day that I had had the ear pain for about 4 weeks at that point, which backtracks to this week. So, yeah. Happy Anniversary to me. Worst anniversary date ever.
But in recognition of this, I thought I'd do a few little updates and blog posts that have been in my brain for a really long time.
First of all, how things stand now: Well. Hmm. Let's go back a bit. In November I had the 22 day migraine when my current neurologist refused to give me any help to abort it ("just keep taking what you're on" she said). That wasn't acceptable to me, since I'd already been to the urgent care and ER in desperation for the pain. Not offering me any help to get rid of this pain was not an option. I needed a new plan. And fast. This led me to rallying all my sources to find new Drs or ideas. In Dec I started seeing an integrative medicine Dr who I was told was good at helping migraines and getting to the root of problems. I saw a chiropractor (who honestly scared me so much with his technique, I almost cried, and he asked me if I was ok.... I wasn't really a fan of that - and although I scheduled a whole month of follow-ups, in the madness of Dec, I cancelled all of them and never went back). And I found a new neurologist.
The integrative medicine Dr did a bunch of blood work that led me to a few ideas to try. I started supplementing Vit D, because my levels were very low. I tried a progesterone supplement, just because he said a lot of women feel better with a little more, even though my levels were ok (this may have contributed to the breast discharge problem that I subsequently had, although I've been off of it ever since and still having that other problem. So whatever. Who knows, but I won't take the progesterone anymore just in case.) And my blood work showed IgG sensitivities to milk, wheat, eggs and gluten. I also tested high for an inflammation marker. So, I went off of all of those foods. The hope was that by avoiding the things that my body was sensitive to, it might reduce inflammation in all of my body, which might be contributing to my pain, or depression, or energy levels, or something. Ok. So we tried it.
My new neurologist was a headache and sleep specialist and had also given me a low-tyramine migraine diet to try. So, that's when I went off of just about every tasty food on the planet (between the migraine diet and the IgG sensitivity foods I was avoiding). This was not a good time. I was lethargic, depressed, and basically slept all day and stopped eating. I didn't have the energy to find things that I could eat and I just didn't feel like bothering with any of it. Plus my pain was terrible. Pain can also be exacerbated by emotions too, so it's just a terrible cycle. It's impossible to tease out all the cause and effects, but I sure didn't feel any better.
In Jan, I also had an overnight sleep study done to rule out apnea, ordered by my new neurologist. I barely slept at all that night, but somehow they collected enough data to still consider it effective. And I got the report and it basically said I DO NOT HAVE SLEEP APNEA. There is a rating score they use to differentiate between normal breathing, mild apnea, moderate apnea, and severe. I was in the normal range. But, the neuro still thought that apnea might be a cause (huh?!?) and that I should try a CPAP machine. Well, the machines are costly and not easy to sleep with, so I held off on that.
He recommended that I try Botox for the chronic migraine. It would take up to 4 treatments, 3 months apart, to know the full effect of how effective Botox would be for me. Everyone has a different response to it. Some people it helps right away, either with intensity or frequency of migraines, some people have an accumulative effect where they get more benefit with each treatment, and some people it doesn't help at all, or even makes them worse. He said it wasn't very painful, most people were fine, and that I wouldn't need the numbing cream that a lot of Drs use for it. LIES. hahah. It was terrible!! Probably the worst medical procedure I can ever recall since the terrible nerve block experience. I sobbed. He asked me if I was ok, and I said no not really. But what else could he do? The injection sites stung and ached and throbbed for weeks. This isn't a typical response. I had more migraine pain in those areas, when previously I didn't have any pain at all there. And my eyebrows became paralyzed - for the entire 3 months that the injection was "working". Oh and the best part?! He had told me there were NO SIDE EFFECTS. Riiiiiiigght. Of course I knew from my own research about all the possible side effects beforehand, but I was ticked that he said there weren't any, and I had decided it was worth at least a try to see if it would help me. I wasn't happy about any of this, and had decided there was no way I could do it again. Just. couldn't. Not worth it.
Sometime in all of this, I was also dealing with breast pain and discharge and having to undergo mammograms, ultrasounds and a ductogram, all of which were not very pleasant.
And the neuro had sent me to a neurotologist (kind of an ENT neuro), and an ophthalmologist. The neurotologist said I most likely had Menieres disease, due to some strange sound distortions I had had occasionally and very rare vertigo episodes years before, and I had very mild hearing loss. But my ear pain, he said, was most likely a nerve issue that the neurologist should help me with. Great. The ophthalmologist said I had very dry eyes and that could cause eye pain. Hmmm. He said I should do drops every couple hrs. But I kind of don't think my dry eyes could be causing the exploding type of eye pain that I experience. I cancelled my follow up there.
So, anyway... the neuro had me try a medicine to rule out Hemicrania Continua, a headache disorder that causes one sided head pain. The med caused half of my soft palate and throat to swell, making me gag, an allergic reaction. I saw a different Dr on short notice who told me I should stop taking it, of course, and prescribed a short term steroid. The steroid seemed to actually help my pain a little, but you usually can't stay on steroids long term. Interesting though.
The neurologist had also tried me on a couple different prescription NSAIDS, a beta-blocker, nausea med, and ear medicine, none of which really helped. He also gave me anxiety meds and a muscle relaxer, which I could take when the pain was bad just to help me zone out and not freak out. Also to help me sleep. That was probably the most help he ever gave me. After a few months being gluten-and-everything-else-free, I went back to the integrative medicine Dr for follow up. My Vit D levels had improved, the inflammation marker was down, and the IgG sensitivities were down but still not normal. Since he wasn't on my insurance and I was paying $200 a visit, we determined that I couldn't afford to keep seeing him. So he recommended I keep off the foods for a couple more months and if I still didn't see any improvement in anything, then it probably wasn't worth staying off the foods (hallelujah). Oh, somewhere in there I also tried taking a thyroid supplement. My levels were on the low side of normal. But I never noticed a difference being on that either, so I stopped. Didn't notice a bit of difference in my pain levels going back to eating normal food, but I did unfortunately gain back the weight I had lost when I wasn't eating. No surprise there.
And then, my neuro kept pushing me to get the CPAP. I explained my concerns in getting it (the cost - $400 out of pocket after our deductible has been met, the possibility of a face mask aggravating my face pain, the fact that I DON'T ACTUALLY HAVE SLEEP APNEA), but he was still very insistent that trying this might help me. He was also very disappointed that I wasn't willing to give Botox another try. Then he tried to tell me that maybe all of my pain was actually stemming from my depression, so he referred me to both a psychiatrist and a neuropsychologist. Hm. I knew my depression had been pretty bad so I felt ok about taking the referrals, since I clearly needed more help than he could give me. But I really didn't like that he wanted to attribute all my pain to my depression. Seriously.
I was seeing a counselor when my pain started and asked him about this, as this is often a question that comes up with chronic pain, and he very clearly explained to me that when pain is associated with depression it most often manifests itself in more vague ways: a dull headache, backache, stomachaches, etc. It doesn't usually follow the pattern of a specific disorder, like Trigeminal Neuralgia. So he didn't think that was causing anything. They might be feeding off each other, as emotion plays a very significant role in the perception of pain, but that would be the extent of it. Many many people with chronic pain get this kind of thing from Drs, mostly when the Dr has run out of ideas and is feeling out of their element. They don't know what else to do, this makes them feel incompetent, and they then blame it on psychology. Most people with pain feel invalidated, accused, and discouraged in this situation. I am not an exception. This, along with his insistence on Botox and CPAP (notably, his areas of expertise), convinced me that I was done with this Dr. He had nothing else in his tricks of the trade to offer me. He didn't know what else to do.
I saw the psychiatrist, who tried me on another anticonvulsant I hadn't tried yet. I had a potentially life threatening reaction, which sent me to the ER. She wanted me to try some antipsychotics to help with my sleep, mostly. I didn't feel good about that. She agreed that getting off the migraine preventative med (also an anticonvulsant) made sense, since I'd been on it for over a year and never felt like it helped at all. The neuro kept telling me my pain would probably be worse without it and didn't recommend getting off. But I followed the psychiatrist's recommended tapering schedule and now I'm off, with no change in my pain, either better or worse. She also increased my antidepressant, but then I started having high blood pressure which can happen from this medication. I had my blood pressure taken in different places and situations (even knocked out in the ER) and it was always high. So, since it was no longer working much for me, it could be causing me high blood pressure (which can happen at any dose), and there's always the slight possibility that my pain could have been caused by it (who knows), we decided to start weaning off of that too. That is a very long slow tapering process, since it is known for having nasty side effects getting of it (one of the worst for antidepressants). The entire process would take a few months, and I'm still in the midst of that. But she told me to call her anytime I'm feeling desperate, or have questions or anything and she seemed like she really wanted to find something to help, and that was encouraging.
I also went and saw the psychologist. She works closely with the neurologist, he referring patients to her, and she likewise. I was nervous about what he might have told her about me, with my stubbornness in refusing the CPAP and Botox, and how he thought my pain was caused by my depression, so perhaps I was a little defensive from the start. I didn't feel comfortable with how my information might be passed back and forth between them and I wasn't sure how it would work, since I had already come to the conclusion that the neuro had basically given up on helping me (our last visit, he told me to come back when I wanted to try the CPAP. Ummm, ok...). And there is also an element of rapport and feeling like someone is on your side. Like someone is listening and genuinely cares about YOUR experience. Having seen a number of psychologists/psychiatrists/counselors before, either for myself or my children, I kind of know how this works and how important this aspect is. Sometimes you just need someone you "click with" for it to work (also important with Drs, incidentally). But this lady.... she seemed kind, and she went through the stack of paperwork I had filled out and asked some relevant questions, but then she just went on and on about some pain she had (nothing at all like mine) and what had helped her, or her sister, or somebody, and have I tried essential oils, or acupuncture....? And I was taken aback a bit. During the visit, I just explained that yes I've tried oils and no I haven't tried acupuncture, but that I've tried a whole dang lot of things, and I was exhausted. My Dr had just basically given up on me. I had seen 22 Drs and health providers of different sorts over the last 2 1/2 yrs (to which she said, why do you think you've seen so many Drs?? in a tone that felt accusatory to me, like I'm just Dr shopping to find one that tells me what I want to hear. I felt I had to defend myself against my choices - not really how I want to spend my time). I've already heard about just about every treatment available, I have been through a lot of crap, and really, can someone just listen to me for once???? I paid $75 to see this woman, I was paying her (I thought) to listen to me, because if a psychologist won't listen to you, then tell me, who will?!?! But I didn't feel like she was listening. She didn't bother to ask me what treatments I had tried, before going on about her own things that helped her, and she hadn't even asked me about my pain enough to even understand it. How could she know what could help me if she hadn't even talked to me about what it was like? She recommended a book about managing chronic pain (which I now have from the library) and suggested I take an online inventory assessment-thing that would help me clarify my strengths and values, which she said is important to remember during pain. I did it, which I found fascinating but not particularly helpful or relevant to what I'm going through. I went back to her again, and we talked a little, but it was clear this wasn't a good fit. If nothing else, I need someone not so closely connected to the neurologist that was driving me crazy. We mutually agreed that I probably shouldn't continue coming back. So that was that.
So that's where I am. I've started getting these terrible insomnia episodes (where I sometimes never fall asleep at all, all night long) that don't make a lot of sense to me. I've never struggled like this before. I don't know if it has anything to do with the medications I'm getting off of, or just my general anxiety levels, or my pain, or what. My pain seems about the same as it's always been, although it's really hard to evaluate that objectively. I sometimes don't get out of bed much for days at a time. I don't have a Dr to see currently. I'm just kind of in a holding pattern until I get off the antidepressant and then evaluate how I feel. There was also a very slight possibility that it could be contributing to the breast problem. So I'm waiting to do anything else about that (since it is ongoing) until I'm off of this too. It all just really stinks. Sometimes I am doing ok, sometimes I am just not.
And for three years now, that's how it's been. Every single day. Happy Anniversary.
Tuesday, August 6, 2013
Fourteen: a "blogging-as-therapy" post
If you're a long-time reader of my blog, you may remember that I went through a stage when I was very self-conscious of who I was in my youth. I was kind of embarrassed by it, in a way I guess. I had issues with integrating who I was with who I am. Yeah, I just had issues. We all have issues, right? It's no big deal. And I am mostly through with it. I've worked through it, partly through writing some great blog posts on here where you guys helped me come to terms with who I was and who I am and that it's all ok and no one really cares and it all works together to make me who I am and I can like who I am and like who I was, even though I may not like parts of who I was and still not like parts of who I am now and still want to become better even though I accept where I'm at and everything will all be ok. It really will be ok. I don't judge you and you don't judge me and we try to create a safe space here on my blog where we all have our own stuff, right? Because we're all imperfect and we're all just doing the best we can. Ok. So we're all clear on that.
So. But sometimes I still like to use my blog as therapy. Writing is a great therapeutic tool.
And so you see my daughter, my oldest daughter, my firstborn, this one that turned me into a mother . . . she turned 14 in May . . . 14?! How can this be? Yes. 14. And this turned my head around and whipped my mind around in circles and kind of kept me up at night in reflective thinking, flashbacking to some kind of memories and aching and wondering how such silly old memories could still seem to hurt so much, remembering and wishing I didn't remember some things. Then wondering how she and I are so different and our experiences will be so different (of course, because we are different), but then how we might be the same, and how can I be her mother, how can I best help her through these years, and why were they so hard for me, why were they just so hard and what was I supposed to learn from them . 14 was a transformative year for me. A hard year in a lot of ways. Much of this was through my own dumb choices which I recognize, but which I was blind to at the time, I guess. Who knows. What do we really know at 14.
14. Ugh.
I turned 14 in the middle of 8th grade. I had already had 5 so-called "boyfriends" (eeeeek, please please remember that little clause about not judging too harshly). I'd had a boyfriend attempt suicide. A friend who had been raped. A few friends who used drugs (although I had never had it offered to me). And one of these so-called boyfriends who did clearly only want "one thing" - he asked for it as his Christmas present. Nice. I had my older sister call and break up with that one for me - because I was very clearly mature enough to handle this on my own. hahahahahahah.
I also got mono at the end of 8th grade which meant I was very sick for what felt like forever. I ended up in the hospital for 3 or 4 days with abscessed tonsils that had to be drained. Then towards the end of that summer when I was 14 I had to have my tonsils taken out, which was awful. So it felt like I was very sick that entire summer.
Anyway, I don't know how others would have described me at that time. I guess I was shy? Insecure? Self-conscious? That sounds pretty typical of a teenage girl, but I think maybe it went beyond that.
You see, I had a problem with talking.
Let me explain.
My first "boyfriend" was in 6th grade, but I've told my kids that we didn't even talk, so it hardly even really qualified as a relationship. And that's no exaggeration. I mean I did not exchange words with this poor boy, ever. I even called him one night (our one and only phone conversation) and we said hello and then sat on the phone listening to each other breathe for 20 minutes. I kid you not. I'd like to say we share equal blame for this, which I suppose must be true to some extent. But I just don't really understand it. Why didn't we say anything to each other?!? How did that even happen? I don't know. And then the thing is, this kind of thing kept happening throughout my relationships. So I began to see that it must be me.
It was excruciating.
I think all of my so-called boyfriends had given me lines at some point such as "you should talk more" "why don't you talk" "you're too quiet" "what are you thinking" (except for the boy who I never actually talked to). These words would swarm around my head like bees and buzz so loudly I couldn't hear anything else until I couldn't even hear any of my own thoughts anymore and I would clam up even more than I had been before. Teenage Kristen Rule #1: If you wanted me to talk, don't bring attention to the fact that I wasn't talking. Some of the time, until they brought it up I wasn't even aware that I "wasn't talking". It was just comfortable quietness or listening to them talk, or laughing, or whatever. But then. Once I was aware. Then it always became awkward self-consciousness. Which I hated. Was I talking enough? What if I wasn't? What if I was too quiet? Was it not ok to be quiet? Other times, usually when I was very emotional, I would have so many thoughts and feelings and something would happen where I would physically shut down and I could. not. talk. I could not make words come out of my mouth. It is very hard to explain - but it's almost like standing at the edge of a high diving board and just not being able to make yourself jump off. I would be frozen. Shut down. One of those things. Anyway. And it just kept happening. So I knew it just wasn't one other person who felt like I didn't talk enough. It was me. As a 13 and 14 year old girl I felt very acutely that something was wrong with me.
Summer after 8th grade. 14.
My first church youth conference. I had a boyfriend who was going. This was a boyfriend who would take the phone and play basketball with it sometimes across the room sometimes when I wasn't "talking", just throwing it into the trash can over and over, and I would sit in silence. I remember that. Why did I sit there? I don't know. I can't remember if we had broken up officially at that point when we went to youth conference, maybe we had. Maybe we were kinda sorta getting back together. I don't remember all the details. We were riding in big charter buses to drive several hours to a college campus for the conference. I sat next to him. He leaned his head on my shoulder and slept. I really liked him. I thought I did. I had a heart that liked too much too early and yearned to be liked - and I mistook all sorts of other things for being liked in return. How could I have protected myself? This is what I ask myself. Maturity would have helped. Self-confidence... Why didn't I have any? I don't know.
At any rate, as things went on at the youth conference my 14 year old self felt like I was being given very clear signals that this boy still liked me and we were very much still together. There were unmistakable signs. Clear actions on his part. At least the first night there were. And then the next day there were various workshops to attend etc and I felt like he ignored me completely. We didn't go to workshops together like we could have. Or go eat meals together at the cafeteria. I didn't see him anywhere, although I tried. He didn't try to see me. I felt discarded. He didn't talk to me again for the next 2 days of the conference.
The last night of the 3 day conference there was a dance. I was tired of feeling so confused and sad and used. I waited around at the dance for him to show. He did. He didn't ask me to dance. I gathered every bit of courage I had and asked him to come with me for a walk outside so we could talk. Because we needed to talk . . . . didn't we? Because I needed to know why he'd been ignoring me. I needed to know where we stood. I needed to know why he had acted (very clearly) that first night like he liked me if he really didn't. Oh my poor little 14 year old heart.
So we walked down a sidewalk and sat down on a bench. I had words in my head that I wanted to say. So many words. Like a huge puzzle of words. I had to say them. I had to. They were exploding out of my head, but it felt so hard so hard to get it out of my mouth. And we sat. We sat. The silence. The longer the silence built, the harder it became to say anything at all. What was wrong with me? What was my problem?!? He started picking flowers off of a nearby bush and dropping them on the ground and crushing them beneath his shoe. I watched. Agonizing. And we sat in silence. And I felt paralyzed. I wanted to speak. I wanted him to speak. I couldn't get any words to come out of my mouth. Nothing. I felt like I couldn't even move. I don't know how long we sat there. How long could it have been....? Finally he said something like "well, if you're not going to talk, I'm going to go."
And he stood up and walked away.
I sat.
I looked at the crushed flowers on the sidewalk by my feet.
The next morning we boarded the buses to go back home. All of my friends, including this boy, somehow ended up on a different charter bus than me. I don't remember how that happened, as we had all been on the same bus when we had come. As if I wasn't already feeling crushed and heartbroken enough (and also hating, hating myself), for some reason this added to it. I sat in a seat by the window, overwhelmed by such overpowering feelings I could not even deal with it. It wasn't just the sadness, although there was that. It was the self-loathing - this not being able to believe what had happened, not wanting to accept this part of myself, this way that I was, this thing I did. Then the rejection. And feeling alone. And the happy noise of the bus all around me but not being a part of any of it. And it was too much. It was too much for some part inside of me that just broke into pieces. And it was then, on the way home from youth conference on that bus, there in that window seat, sure that no one was paying attention to me (and they weren't), that I first self-harmed. I won't go into details because you really don't need to know. But I feel like this was the age (if not before) when I began having depressive episodes. This was definitely the beginning of one. I feel like they continued ever since although I didn't recognize it as such until much much later.
And I hope you don't feel like I am placing any blame on this particular boy or what he did, although rejection can certainly play into triggers for this kind of thing. My goodness, I can only have very vague and compassionate views of what goes on in any 14 year old boy's head. And certainly I am very forgiving of any poor boy who did his best to like/love me back in my teenage years. Sigh.
14.
And so, that was one of the defining turning points during the summer after my 8th grade year. Along with having mono/being hospitalized with abscessed tonsils and then getting my tonsils taken out. It was just a bad summer.
My problems with talking, by the way, continued to plague me well throughout my dating years, even into my marriage, although Zac has been able to patiently work that out with me when I would shut down over the years. It's been a hard long process even with him, which I am somewhat embarrassed to admit. But he never told me I didn't talk enough or that I was too quiet. So that is to his credit.
So, you may think I am making a bigger deal out of all of this than I should. I certainly don't see any point in comparing what should be a big deal and what shouldn't. And this is just my story, one part of my story - I can only tell my own and what it meant to me. I look at my sweet daughter, my 14 year old daughter, and I know she will have her own story to tell, which will not be like mine (in the time since I first started this post, she has gone to her first youth conference!!). And I hope I will be able to help her navigate through her own. I hope she will not have to suffer in the same ways I did. I hope she will be confident and will be loved and love when she is more ready. (So far there has been no mention of any boys (fingers crossed).) But I also hope that there was some purpose to what I have gone through. That there is some reason for it all in helping me become who I am.
This is only one little story of me being 14.
It is hard sometimes to think about.
But it takes out some of the sting to tell it out loud.
(me second from left, a couple days before I was hospitalized with the abscessed tonsils. I got very sick very quickly. This is pictured with my siblings and visiting cousins)
So. But sometimes I still like to use my blog as therapy. Writing is a great therapeutic tool.
And so you see my daughter, my oldest daughter, my firstborn, this one that turned me into a mother . . . she turned 14 in May . . . 14?! How can this be? Yes. 14. And this turned my head around and whipped my mind around in circles and kind of kept me up at night in reflective thinking, flashbacking to some kind of memories and aching and wondering how such silly old memories could still seem to hurt so much, remembering and wishing I didn't remember some things. Then wondering how she and I are so different and our experiences will be so different (of course, because we are different), but then how we might be the same, and how can I be her mother, how can I best help her through these years, and why were they so hard for me, why were they just so hard and what was I supposed to learn from them . 14 was a transformative year for me. A hard year in a lot of ways. Much of this was through my own dumb choices which I recognize, but which I was blind to at the time, I guess. Who knows. What do we really know at 14.
14. Ugh.
I turned 14 in the middle of 8th grade. I had already had 5 so-called "boyfriends" (eeeeek, please please remember that little clause about not judging too harshly). I'd had a boyfriend attempt suicide. A friend who had been raped. A few friends who used drugs (although I had never had it offered to me). And one of these so-called boyfriends who did clearly only want "one thing" - he asked for it as his Christmas present. Nice. I had my older sister call and break up with that one for me - because I was very clearly mature enough to handle this on my own. hahahahahahah.
I also got mono at the end of 8th grade which meant I was very sick for what felt like forever. I ended up in the hospital for 3 or 4 days with abscessed tonsils that had to be drained. Then towards the end of that summer when I was 14 I had to have my tonsils taken out, which was awful. So it felt like I was very sick that entire summer.
Anyway, I don't know how others would have described me at that time. I guess I was shy? Insecure? Self-conscious? That sounds pretty typical of a teenage girl, but I think maybe it went beyond that.
You see, I had a problem with talking.
Let me explain.
My first "boyfriend" was in 6th grade, but I've told my kids that we didn't even talk, so it hardly even really qualified as a relationship. And that's no exaggeration. I mean I did not exchange words with this poor boy, ever. I even called him one night (our one and only phone conversation) and we said hello and then sat on the phone listening to each other breathe for 20 minutes. I kid you not. I'd like to say we share equal blame for this, which I suppose must be true to some extent. But I just don't really understand it. Why didn't we say anything to each other?!? How did that even happen? I don't know. And then the thing is, this kind of thing kept happening throughout my relationships. So I began to see that it must be me.
It was excruciating.
I think all of my so-called boyfriends had given me lines at some point such as "you should talk more" "why don't you talk" "you're too quiet" "what are you thinking" (except for the boy who I never actually talked to). These words would swarm around my head like bees and buzz so loudly I couldn't hear anything else until I couldn't even hear any of my own thoughts anymore and I would clam up even more than I had been before. Teenage Kristen Rule #1: If you wanted me to talk, don't bring attention to the fact that I wasn't talking. Some of the time, until they brought it up I wasn't even aware that I "wasn't talking". It was just comfortable quietness or listening to them talk, or laughing, or whatever. But then. Once I was aware. Then it always became awkward self-consciousness. Which I hated. Was I talking enough? What if I wasn't? What if I was too quiet? Was it not ok to be quiet? Other times, usually when I was very emotional, I would have so many thoughts and feelings and something would happen where I would physically shut down and I could. not. talk. I could not make words come out of my mouth. It is very hard to explain - but it's almost like standing at the edge of a high diving board and just not being able to make yourself jump off. I would be frozen. Shut down. One of those things. Anyway. And it just kept happening. So I knew it just wasn't one other person who felt like I didn't talk enough. It was me. As a 13 and 14 year old girl I felt very acutely that something was wrong with me.
Summer after 8th grade. 14.
My first church youth conference. I had a boyfriend who was going. This was a boyfriend who would take the phone and play basketball with it sometimes across the room sometimes when I wasn't "talking", just throwing it into the trash can over and over, and I would sit in silence. I remember that. Why did I sit there? I don't know. I can't remember if we had broken up officially at that point when we went to youth conference, maybe we had. Maybe we were kinda sorta getting back together. I don't remember all the details. We were riding in big charter buses to drive several hours to a college campus for the conference. I sat next to him. He leaned his head on my shoulder and slept. I really liked him. I thought I did. I had a heart that liked too much too early and yearned to be liked - and I mistook all sorts of other things for being liked in return. How could I have protected myself? This is what I ask myself. Maturity would have helped. Self-confidence... Why didn't I have any? I don't know.
At any rate, as things went on at the youth conference my 14 year old self felt like I was being given very clear signals that this boy still liked me and we were very much still together. There were unmistakable signs. Clear actions on his part. At least the first night there were. And then the next day there were various workshops to attend etc and I felt like he ignored me completely. We didn't go to workshops together like we could have. Or go eat meals together at the cafeteria. I didn't see him anywhere, although I tried. He didn't try to see me. I felt discarded. He didn't talk to me again for the next 2 days of the conference.
The last night of the 3 day conference there was a dance. I was tired of feeling so confused and sad and used. I waited around at the dance for him to show. He did. He didn't ask me to dance. I gathered every bit of courage I had and asked him to come with me for a walk outside so we could talk. Because we needed to talk . . . . didn't we? Because I needed to know why he'd been ignoring me. I needed to know where we stood. I needed to know why he had acted (very clearly) that first night like he liked me if he really didn't. Oh my poor little 14 year old heart.
So we walked down a sidewalk and sat down on a bench. I had words in my head that I wanted to say. So many words. Like a huge puzzle of words. I had to say them. I had to. They were exploding out of my head, but it felt so hard so hard to get it out of my mouth. And we sat. We sat. The silence. The longer the silence built, the harder it became to say anything at all. What was wrong with me? What was my problem?!? He started picking flowers off of a nearby bush and dropping them on the ground and crushing them beneath his shoe. I watched. Agonizing. And we sat in silence. And I felt paralyzed. I wanted to speak. I wanted him to speak. I couldn't get any words to come out of my mouth. Nothing. I felt like I couldn't even move. I don't know how long we sat there. How long could it have been....? Finally he said something like "well, if you're not going to talk, I'm going to go."
And he stood up and walked away.
I sat.
I looked at the crushed flowers on the sidewalk by my feet.
The next morning we boarded the buses to go back home. All of my friends, including this boy, somehow ended up on a different charter bus than me. I don't remember how that happened, as we had all been on the same bus when we had come. As if I wasn't already feeling crushed and heartbroken enough (and also hating, hating myself), for some reason this added to it. I sat in a seat by the window, overwhelmed by such overpowering feelings I could not even deal with it. It wasn't just the sadness, although there was that. It was the self-loathing - this not being able to believe what had happened, not wanting to accept this part of myself, this way that I was, this thing I did. Then the rejection. And feeling alone. And the happy noise of the bus all around me but not being a part of any of it. And it was too much. It was too much for some part inside of me that just broke into pieces. And it was then, on the way home from youth conference on that bus, there in that window seat, sure that no one was paying attention to me (and they weren't), that I first self-harmed. I won't go into details because you really don't need to know. But I feel like this was the age (if not before) when I began having depressive episodes. This was definitely the beginning of one. I feel like they continued ever since although I didn't recognize it as such until much much later.
And I hope you don't feel like I am placing any blame on this particular boy or what he did, although rejection can certainly play into triggers for this kind of thing. My goodness, I can only have very vague and compassionate views of what goes on in any 14 year old boy's head. And certainly I am very forgiving of any poor boy who did his best to like/love me back in my teenage years. Sigh.
14.
And so, that was one of the defining turning points during the summer after my 8th grade year. Along with having mono/being hospitalized with abscessed tonsils and then getting my tonsils taken out. It was just a bad summer.
My problems with talking, by the way, continued to plague me well throughout my dating years, even into my marriage, although Zac has been able to patiently work that out with me when I would shut down over the years. It's been a hard long process even with him, which I am somewhat embarrassed to admit. But he never told me I didn't talk enough or that I was too quiet. So that is to his credit.
So, you may think I am making a bigger deal out of all of this than I should. I certainly don't see any point in comparing what should be a big deal and what shouldn't. And this is just my story, one part of my story - I can only tell my own and what it meant to me. I look at my sweet daughter, my 14 year old daughter, and I know she will have her own story to tell, which will not be like mine (in the time since I first started this post, she has gone to her first youth conference!!). And I hope I will be able to help her navigate through her own. I hope she will not have to suffer in the same ways I did. I hope she will be confident and will be loved and love when she is more ready. (So far there has been no mention of any boys (fingers crossed).) But I also hope that there was some purpose to what I have gone through. That there is some reason for it all in helping me become who I am.
This is only one little story of me being 14.
It is hard sometimes to think about.
But it takes out some of the sting to tell it out loud.
(me second from left, a couple days before I was hospitalized with the abscessed tonsils. I got very sick very quickly. This is pictured with my siblings and visiting cousins)
"If I don't write to empty my mind,
I go mad."
- Lord Byron
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