Really important medical information - and RANT about my psychiatrists
So. I am livid and relieved simultaneously. I had been feeling VERY low in/of energy since around New Year's. I figured at first that it was just because I'd worked SO hard at getting the house cleaned up before the holidays. And when I say "cleaned up", I mean WE NOW HAVE AN ENTIRE USABLE FIRST FLOOR - the living room, dining room, and kitchen are all usable, reasonably organized though cluttered a bit, but for the first time since we moved into this house back in January 2008, the place looks like adults live here! Which is HUGE for someone with ADD, and OCD hoarding. We will actually be able to have PEOPLE OVER for dinners and gaming and parties. Matthew doesn't have to be ashamed to have guests over anymore. I have put an "after" photo at the end of this entry. I didn't put the "before" photos on disc yet, so that will have to happen another time. But I digress.
Things had gotten really bad. I was staying in bed and sleeping more and more for much of the day, and even when I woke up, I didn't feel rested, and I kept yawning, I had no motivation or desire to get anything done. I thought maybe it's just the weather, although I'd been using my full spectrum light. It was just frustrating as hell. I was taking caffeine, and stretching, and I'd go downstairs late in the day and try to do dishes, but I just could barely last long enough to do a sink-full - and right now about every dish and utensil we own is in need of washing. Thank God Matthew has been doing laundry for us, to earn game time on his X-Box 360.
Then after thinking about other possible causes of this malaise, I had this sudden epiphany yesterday, and I will tell you about it at great length - but behind a cut. Here goes...
After all the drama with John that started last April and dragged on through the summer,with the dropped medical coverage for me and Matthew, I FINALLY got Matthew and myself on Medicaid in July. This was from when I applied for assistance in MAY. So the paperwork all went through, and I made calls to see which of my current doctors would accept my new Manged Care Organization, Priority Partners. Many of them did, but a few didn't. I had to switch psychiatrists. I had my old doctor write me three more months of scrips right before I left her care, and I was told I had to see a new therapist before I could see the new psychiatrist. I thought "Fine, I like to be in therapy. My friend Tangent had actually recently been suggesting I see one, so that's great, and it's all covered, no cost to me." So I met with the therapist, and she's been very good for me. She helped me focus and set some goals, including clearing up and cleaning up the dining room and living room. Which I intend to post before and after pictures of once I can. Then I finally met with the psychiatrist, Dr. Safer, in October. I still had some meds left over from Dr. Martin, and this new guy wrote me scrips which I could fill after my old meds ran out. All well and good.
Here's the problem - this guy, after going over my list of current meds, wanted to make some changes. You have to understand what kind of a threat this felt like to me. I told him, I told him multiple times, "If it ain't broke, don't fix it!" "It took me TEN YEARS of trial and error with a very long list of medications, during which time I felt it necessary to take Matthew and myself away from John in Virginia and to stay with my parents in New York while I was between medications and waiting for the new ones to kick in, and 6 visits to the hospital from 1999 - 2002 for suicidal ideation, to get me to where I am now, which is basically happy and functional for the most part. I still have problems, relating to the bipolar mood swings, and the OCD hoarding, but I'm working on them. I have a happy and stable love relationship, I have a really loving and intelligent, happy child, I have my own business even though it's been on hiatus for a while, but I get things done mostly, and my downs are less frequent, less debilitating, and aren't long lasting, and I haven't been suicidal since I got onto lamictal at the end of 2002. The last pieces of the puzzle that is me fell into place in 2007, when I realized I had ADD after going over the list the doctor gave me to see if Matthew had ADD (which he does, also). And then I found that adding caffeine to the regimen helped increase my energy, productivity, and happiness even more. And using my full spectrum light helped too. So this stranger, who by the way comes across as a doddering old man much of the time, who can't keep my name straight and has to look at his notes to remember who I am after 4 or 5 visits, wanted to muck around with my meds. I really held my ground, except that he insisted on changing my ADD med from methylphenidate (Ritalin) to Metadate. He said "It's the same thing. It will just help you so that you won't get that "dip" in the afternoon". I told him that I don't GET a "dip" in the afternoon, but I let him give me the scrip.
It can take me a while to notice things, and to remember things. I don't know if there is Alzheimer's that runs in my family, my cousin told me recently that my grandfather had it, which was news to me, and I don't think it was ever documented, but it's a possibility. I noticed a change in my memory after Matthew was born 14 years ago (ACK!), which I thought was "Mommy brain", a phenomenon observed by many of my friends after their children were born, and also I started taking psych meds after Matthew was born (one of them I took before he was born, Xanax, to stop the panic attacks I was having in my third trimester, one of which might have brought on the pre-term labor I had at 29 weeks which was scary, so even though I was worried about the med's affect on the baby, it was better than delivering him that early), and now I take 7 different medications daily, which also might affect my memory. Well, I had some left-over Ritalin, so I don't know precisely when I switched from the methylphenidate to the metadate. But I suspected upon retrospect that it was RIGHT AROUND the time that this low energy problem started.
It was early afternoon yesterday when I finally had this realization. I called my regular physician and asked him if there was anything else that he could test me for, because as the lethargy and fatigue started getting alarming, I had him test my blood for mononucleosis, low thyroid, and low iron. Those tests were all normal. I even called my father's hematological oncologist, or oncological hematologist, to ask if it was possible I'd inherited my father's blood cancers, multiple myeloma, and/or Ig G cell dysplasia, but I was told it was unlikely I had either because they usually manifest in older people, and my metabolic results from my blood work would have showed some kind of problem if that were the case. The more I thought about the medication, the more I got VERY ANGRY. I called to make an appointment with my psychiatrist, and thankfully, they had an appointment last night at 5pm. All I could think of was "I TOLD him not to mess around with my medicine regime, and he just HAD to FUCK with it. Jesus Christ!!! A whole month and a half that I could have been getting things done, which is REALLY important, especially now, since my mother told me that she would only pay our rent for 4 more months, and I have NO IDEA if I'm going to be able to generate enough income to make the rent money. I applied for disability but it's in process of my first appeal, and God knows how long that might take, or if I will even ever get it.
So I saw the doctor at 5pm. Somehow I managed to yell at him diplomatically. It's a talent. He told me again that the metadate was the same as the methylphenidate, and I really don't get why if that's the case, why he had to CHANGE the damned thing, and I informed him that sometimes different formulations of medications react differently in different people. Which as a shrink, I think that he ought to have KNOWN already. The man must be in his late 70s or early 80s, and presumably practicing psychiatry (say that three times fast) for a good long time. Sigh. So I got him to write me the scrip. Even then, he insisted on giving me two 20s instead of 4 10s which I used to take. But at least it's the same medication. He insisted I take them twice a day, but I decided I'd start out doing what I used to do, and take them all in the morning.
I took one in the afternoon after I got back from his office, and lo and behold, I actually felt like DOING things last night! I decided to get to sleep early (which I really ought to have done, but instead I played on Farm Town and Zoo World on Facebook, and watched more of Heroes first season which we got out of the library here in Dundalk - they do free 7 day rentals on some movies and a lot of television shows we like). I took my new(OLD) meds this morning, along with several swigs of Pepsi, and I felt the old energizing effect - yay! I got a LOT done from around 10:00am until 2:00pm, and then I felt a bit sleepy and I figured I'd post here and on Facebook and then take a nap, and then go back to the first floor and tackle the dishes and make dinner (which rarely happens around here, usually people forage for themselves, but I know it's better for us if we eat meals together as a family, and now that we have a DINING ROOM!!! I want to do meals more often). I also want to make some bread in our bread-makers, a white and a rye, which don't take too long to prepare and are done with prep and baking time inside of 3 hours, and some soups in the crock pot and on the stove. I know this is very ambitious, but a person's reach should exceed their grasp, etc.
So thanks for reading, and maybe this information will be useful to you or someone you know. Medications really do have different effects on different people, and you KNOW how you feel, and the doctors you have really need to listen to you!!!
Hugs!
Sue
And here is one photo of the way our living room looks now! :)
Things had gotten really bad. I was staying in bed and sleeping more and more for much of the day, and even when I woke up, I didn't feel rested, and I kept yawning, I had no motivation or desire to get anything done. I thought maybe it's just the weather, although I'd been using my full spectrum light. It was just frustrating as hell. I was taking caffeine, and stretching, and I'd go downstairs late in the day and try to do dishes, but I just could barely last long enough to do a sink-full - and right now about every dish and utensil we own is in need of washing. Thank God Matthew has been doing laundry for us, to earn game time on his X-Box 360.
Then after thinking about other possible causes of this malaise, I had this sudden epiphany yesterday, and I will tell you about it at great length - but behind a cut. Here goes...
After all the drama with John that started last April and dragged on through the summer,with the dropped medical coverage for me and Matthew, I FINALLY got Matthew and myself on Medicaid in July. This was from when I applied for assistance in MAY. So the paperwork all went through, and I made calls to see which of my current doctors would accept my new Manged Care Organization, Priority Partners. Many of them did, but a few didn't. I had to switch psychiatrists. I had my old doctor write me three more months of scrips right before I left her care, and I was told I had to see a new therapist before I could see the new psychiatrist. I thought "Fine, I like to be in therapy. My friend Tangent had actually recently been suggesting I see one, so that's great, and it's all covered, no cost to me." So I met with the therapist, and she's been very good for me. She helped me focus and set some goals, including clearing up and cleaning up the dining room and living room. Which I intend to post before and after pictures of once I can. Then I finally met with the psychiatrist, Dr. Safer, in October. I still had some meds left over from Dr. Martin, and this new guy wrote me scrips which I could fill after my old meds ran out. All well and good.
Here's the problem - this guy, after going over my list of current meds, wanted to make some changes. You have to understand what kind of a threat this felt like to me. I told him, I told him multiple times, "If it ain't broke, don't fix it!" "It took me TEN YEARS of trial and error with a very long list of medications, during which time I felt it necessary to take Matthew and myself away from John in Virginia and to stay with my parents in New York while I was between medications and waiting for the new ones to kick in, and 6 visits to the hospital from 1999 - 2002 for suicidal ideation, to get me to where I am now, which is basically happy and functional for the most part. I still have problems, relating to the bipolar mood swings, and the OCD hoarding, but I'm working on them. I have a happy and stable love relationship, I have a really loving and intelligent, happy child, I have my own business even though it's been on hiatus for a while, but I get things done mostly, and my downs are less frequent, less debilitating, and aren't long lasting, and I haven't been suicidal since I got onto lamictal at the end of 2002. The last pieces of the puzzle that is me fell into place in 2007, when I realized I had ADD after going over the list the doctor gave me to see if Matthew had ADD (which he does, also). And then I found that adding caffeine to the regimen helped increase my energy, productivity, and happiness even more. And using my full spectrum light helped too. So this stranger, who by the way comes across as a doddering old man much of the time, who can't keep my name straight and has to look at his notes to remember who I am after 4 or 5 visits, wanted to muck around with my meds. I really held my ground, except that he insisted on changing my ADD med from methylphenidate (Ritalin) to Metadate. He said "It's the same thing. It will just help you so that you won't get that "dip" in the afternoon". I told him that I don't GET a "dip" in the afternoon, but I let him give me the scrip.
It can take me a while to notice things, and to remember things. I don't know if there is Alzheimer's that runs in my family, my cousin told me recently that my grandfather had it, which was news to me, and I don't think it was ever documented, but it's a possibility. I noticed a change in my memory after Matthew was born 14 years ago (ACK!), which I thought was "Mommy brain", a phenomenon observed by many of my friends after their children were born, and also I started taking psych meds after Matthew was born (one of them I took before he was born, Xanax, to stop the panic attacks I was having in my third trimester, one of which might have brought on the pre-term labor I had at 29 weeks which was scary, so even though I was worried about the med's affect on the baby, it was better than delivering him that early), and now I take 7 different medications daily, which also might affect my memory. Well, I had some left-over Ritalin, so I don't know precisely when I switched from the methylphenidate to the metadate. But I suspected upon retrospect that it was RIGHT AROUND the time that this low energy problem started.
It was early afternoon yesterday when I finally had this realization. I called my regular physician and asked him if there was anything else that he could test me for, because as the lethargy and fatigue started getting alarming, I had him test my blood for mononucleosis, low thyroid, and low iron. Those tests were all normal. I even called my father's hematological oncologist, or oncological hematologist, to ask if it was possible I'd inherited my father's blood cancers, multiple myeloma, and/or Ig G cell dysplasia, but I was told it was unlikely I had either because they usually manifest in older people, and my metabolic results from my blood work would have showed some kind of problem if that were the case. The more I thought about the medication, the more I got VERY ANGRY. I called to make an appointment with my psychiatrist, and thankfully, they had an appointment last night at 5pm. All I could think of was "I TOLD him not to mess around with my medicine regime, and he just HAD to FUCK with it. Jesus Christ!!! A whole month and a half that I could have been getting things done, which is REALLY important, especially now, since my mother told me that she would only pay our rent for 4 more months, and I have NO IDEA if I'm going to be able to generate enough income to make the rent money. I applied for disability but it's in process of my first appeal, and God knows how long that might take, or if I will even ever get it.
So I saw the doctor at 5pm. Somehow I managed to yell at him diplomatically. It's a talent. He told me again that the metadate was the same as the methylphenidate, and I really don't get why if that's the case, why he had to CHANGE the damned thing, and I informed him that sometimes different formulations of medications react differently in different people. Which as a shrink, I think that he ought to have KNOWN already. The man must be in his late 70s or early 80s, and presumably practicing psychiatry (say that three times fast) for a good long time. Sigh. So I got him to write me the scrip. Even then, he insisted on giving me two 20s instead of 4 10s which I used to take. But at least it's the same medication. He insisted I take them twice a day, but I decided I'd start out doing what I used to do, and take them all in the morning.
I took one in the afternoon after I got back from his office, and lo and behold, I actually felt like DOING things last night! I decided to get to sleep early (which I really ought to have done, but instead I played on Farm Town and Zoo World on Facebook, and watched more of Heroes first season which we got out of the library here in Dundalk - they do free 7 day rentals on some movies and a lot of television shows we like). I took my new(OLD) meds this morning, along with several swigs of Pepsi, and I felt the old energizing effect - yay! I got a LOT done from around 10:00am until 2:00pm, and then I felt a bit sleepy and I figured I'd post here and on Facebook and then take a nap, and then go back to the first floor and tackle the dishes and make dinner (which rarely happens around here, usually people forage for themselves, but I know it's better for us if we eat meals together as a family, and now that we have a DINING ROOM!!! I want to do meals more often). I also want to make some bread in our bread-makers, a white and a rye, which don't take too long to prepare and are done with prep and baking time inside of 3 hours, and some soups in the crock pot and on the stove. I know this is very ambitious, but a person's reach should exceed their grasp, etc.
So thanks for reading, and maybe this information will be useful to you or someone you know. Medications really do have different effects on different people, and you KNOW how you feel, and the doctors you have really need to listen to you!!!
Hugs!
Sue
And here is one photo of the way our living room looks now! :)