[BeyondtheRainbow]

I've made a lot of excuses for her. She's busy, she was off for a day, arranging direct admits takes time, etc. But now I'm just frustrated. She didn't call again today despite a message left yesterday (partially asking if I can resume medication so I can sleep) and despite telling me Sunday that she doesn't want me to feel like I'm alone without anyone caring. Well, another week with no discernible progress or contact to tell me why that is happening certainly feels like nobody cares.

I'm tired, I have been feeling better physically but today it hurts to swallow so I'm scared round 2 of this is coming (my mom had 2 rounds of it), I'm anxious, I'm running out of time that makes sure everything possible is covered by medicaid spend-down (a week from today I will not be willing to go in because I don't want to hit my spenddown just to start over when the month changes). I have no appt. scheduled to talk to her about any of this and face to face is the best way to reach her. But I think I wasn't scheduled because presumably the hospital would do it.

I either want to do this or accept that I'm going to feel like crap forever and deal with it.

It's so hard for me to get mad at her because she goes above and beyond all the time but when she fails at it she REALLY fails. Yet it's hard to forget that one time when she wasn't there for me it was b/c she had been diagnosed with cancer. I know that I am not an easy patient to manage because I cycle hard and fast and often need med changes between appointments and they don't let me make those decisions as freely as I could before some dangerous suicidal stuff.

But I am mad this time. I keep begging for answers and to just DO THIS and I'm getting nowhere and all it does is emphasize who miserable I am. Monday I think I'll ask my therapist to try to reach her. He sometimes can succeed where I can't although I'm not sure what good it will do; he's not going to say anything she doesn't know.

All the while my brother is in jail (just for a week) and while I think he should have had a longer sentence I can't stop thinking about him and how scary it must be (he has Asperger's and jail is way out of his coping strategies). He should be there. It's just hard to think of and confusing because I both get angry and want to scream about how he is getting a taste of what the people he hurt survived and then I just hurt for him. I hate the whole thing.

I am just so tired of being anxious an it seems to just keep getting worse.

[wiretwister]

[raspberrytorte]

It sucks your pdoc is failing you. I'm even frustrated with your situation! Your pdoc needs to be doing more. I just want you to be able to get better and get things over with regarding seroquel taper! Hugs.

[Ocean Swimmer]

We are here for you. Don't think you're all alone.
It's a hard life. But some days it's better. Much love and concern.

[cashart10]

All my love

[BeyondtheRainbow]

I sent another email. No response as yet but maybe she'll still get it this weekend. I don't know what else to do. Phone messages don't seem to work, emails don't work, I've just had it. I asked her if this is something she doesn't really want to do and I've misunderstood or if this is something that is not going to work out and what does that mean. I wanted so badly to tell her that she is making me feel like I don't matter, that all these months of feeling bad don't matter, and that taking care of me is at the bottom of her list. But I know those things aren't true even though it sure seems that way lately. I realized and wrote but took it out because I couldn't make it sound nice that I have not had a med change since August when I was in the hospital. Ever since then we've been waiting for something to happen--Latuda samples, Rexulti samples, ECT approval, my need to get past Christmas before going IP for Clozaril, etc. No wonder I'm fed up; that is 5 months of WAITING when I've been either severely depressed or severely mixed the whole time. And all that's happened is we've talked a lot about things that theoretically could work and yet nobody is trying them.

I'm just exhausted and so tired of this. I feel alone and somewhat abandoned and that I must have done something wrong and that she must be mad at me. I don't understand why else she no longer is helping me. I just don't get it. And if I could sleep it would help. But I can't even get approval to take the sleeping pills that are 12 inches away from me.

And yet I know that she does care and wouldn't hurt or ignore me. She just wouldn't. She's had chances to get out of taking care of me and I've offered them to her as well because I know I'm a high needs patient, even for her practice of people who tend to be treatment resistant (at least I have been this year) and she hasn't done that. She has always treated me as if she liked me quite a bit. But this is awful. This is hurtful and frustrating and is making me angry because I feel like I just got dropped off on the side of a country rode to find my own way. And honestly I am not so sure that my memories are wrong; they are what I wrote down both times immediately after getting home. I think she's documented differently/forgotten to do what she was supposed to to do.

and no, I'm not going to change pdocs. If this gets worse maybe. But before that would happen there would be a serious discussion, possibly with the help of my therapist, because what I have with her is too good to throw away because I'm angry once. (And she's about the best there is for treatment resistant patients so I am even less willing to get rid of her for that).

Hey BtR, how are you doing?

[BeyondtheRainbow]

About the same. Still waiting, still frustrated. My therapist emailed my pdoc yesterday (which goes into the same account I email which she just can't keep up with) and tried to call her but the phone system at the center was down so he was supposed to try to do that when he had a phone again. I think he was worried about me yesterday although I'm not sure what specifically made him worried.

Mostly today I'm exhausted. I had a migraine last night that was pretty bad, the worst one I've had in quite a while. Eventually the meds for it put me to sleep but until they did I was trying to read my Kindle on dim with my painful eye covered and while my mood went all over the place, laughing and crying for no reason. Then for some reason I woke up just before 6 and was awake for several hours. Now I'm just tired and my migraine eye is still weird which is normal. I think today is a pajama day, all day. I'm trying for low-key to see if that helps slow the mixed stuff down. It is getting really bad and really hard to handle; I get mad at myself when I lose control and I can't help losing control.

Hopefully I'll hear something later today if my therapist got through. If he didn't then I'm sure it will be nothing. I'll have to call there tomorrow or Thursday morning if I don't hear from her to see if he succeeded in reaching her.

It gets complicated after the end of next week. I have Medicaid but only after I pay a certain amount of money in the month. The first day in the hospital easily covers it but the months go by the calendar instead of by treatment dates (so stupid). So I am not very willing to go in at the end of the month and then have to pay (the admittedly small but adds up if I'm there long enough) the fees for most of my stay that could have been covered by Medicaid with better planning. But I think I have to go then if that's when they get around to it (and I sincerely hope they do before 2 weeks have passed) because if I want to delay it could take another month to get things organized again.

So I'm still very stressed and frustrated. Thanks for asking.

I'm sorry your treatment is so.. un-organized at the moment.

Originally Posted by BeyondtheRainbow

About the same. Still waiting, still frustrated. My therapist emailed my pdoc yesterday (which goes into the same account I email which she just can't keep up with) and tried to call her but the phone system at the center was down so he was supposed to try to do that when he had a phone again. I think he was worried about me yesterday although I'm not sure what specifically made him worried.

Mostly today I'm exhausted. I had a migraine last night that was pretty bad, the worst one I've had in quite a while. Eventually the meds for it put me to sleep but until they did I was trying to read my Kindle on dim with my painful eye covered and while my mood went all over the place, laughing and crying for no reason. Then for some reason I woke up just before 6 and was awake for several hours. Now I'm just tired and my migraine eye is still weird which is normal. I think today is a pajama day, all day. I'm trying for low-key to see if that helps slow the mixed stuff down. It is getting really bad and really hard to handle; I get mad at myself when I lose control and I can't help losing control.

Hopefully I'll hear something later today if my therapist got through. If he didn't then I'm sure it will be nothing. I'll have to call there tomorrow or Thursday morning if I don't hear from her to see if he succeeded in reaching her.

It gets complicated after the end of next week. I have Medicaid but only after I pay a certain amount of money in the month. The first day in the hospital easily covers it but the months go by the calendar instead of by treatment dates (so stupid). So I am not very willing to go in at the end of the month and then have to pay (the admittedly small but adds up if I'm there long enough) the fees for most of my stay that could have been covered by Medicaid with better planning. But I think I have to go then if that's when they get around to it (and I sincerely hope they do before 2 weeks have passed) because if I want to delay it could take another month to get things organized again.

So I'm still very stressed and frustrated. Thanks for asking.

Since I'm new, I was just curious why you want to come off seroquel and go on clozeril? I'm sure you've explained a million times, I just am new....Sorry.

[BeyondtheRainbow]

I am on a very high dose of Seroquel (and tried even higher months ago) and it is just no longer working for me. I've tried every other atypical that I'm either not allergic to by default b/c it is a derivative of something else I'm allergic to or it doesn't cover my symptoms well enough, except one that I can't get samples to try and I can't afford it on Medicare. Typical APs are out because I have a history of movement disorders on too many meds and was hospitalized this summer with movement disorder on a typical. I'm at high risk with all APs and since the typicals have a higher risk of movement disorders they aren't good for me. Which leaves Clozaril.

Clozaril and Seroquel have an interaction that can affect the heart's rhythm so they can't be mixed. So I'm going to be going IP and then will have the Seroquel removed and Clozaril started when it is safe (and they can monitor so it will be able to be used earlier).

So basically it's about running out of meds. I've been quite treatment resistant and am currently on cocktail #69 (not including all the dose adjustments over many years); clozaril will be 70 and over 40 meds tried. Clozaril also is supposed to help when nothing else does and I've never really been stable, just less cycling at times.

Originally Posted by BeyondtheRainbow

I am on a very high dose of Seroquel (and tried even higher months ago) and it is just no longer working for me. I've tried every other atypical that I'm either not allergic to by default b/c it is a derivative of something else I'm allergic to or it doesn't cover my symptoms well enough, except one that I can't get samples to try and I can't afford it on Medicare. Typical APs are out because I have a history of movement disorders on too many meds and was hospitalized this summer with movement disorder on a typical. I'm at high risk with all APs and since the typicals have a higher risk of movement disorders they aren't good for me. Which leaves Clozaril.

Clozaril and Seroquel have an interaction that can affect the heart's rhythm so they can't be mixed. So I'm going to be going IP and then will have the Seroquel removed and Clozaril started when it is safe (and they can monitor so it will be able to be used earlier).

So basically it's about running out of meds. I've been quite treatment resistant and am currently on cocktail #69 (not including all the dose adjustments over many years); clozaril will be 70 and over 40 meds tried. Clozaril also is supposed to help when nothing else does and I've never really been stable, just less cycling at times.

That must be really hard. I really hope the clozaril works for you. Keep us updated....

[BeyondtheRainbow]

Thanks. I hope it does too because if it doesn't I am going to be a complete mess. I have been on heavy sedatives for 13 years so coming off that is going to be.....interesting. If the clozaril doesn't work I'm not sure what they'll put me on and how they will end the mania. I was extremely depressed for months in the summer and fall and we talked about ECT but the hospital dr. recommended it be the final resort because of something in how my symptoms presented made him think it wouldn't work well. Now I'm not depressed so that's less likely and without Seroquel I'm assuming I'll be even more mixed than I am now which is a very scary thought. I'm glad I'll be in the hospital with the good drugs while I do that.