Sunday, November 30, 2014

I'm glad I stuck it out

I made a couple of minor med changes over the past two days. Yesterday I was still feeling very numb- and thinking that this is not acceptable and I can't risk another day of this and getting nothing done. But I was still hoping it was temporary, and possibly because I had messed up my Effexor (it didn't feel like Zyprexa numbness), so I kept at it- and today I feel good. The numbness is better. My mood is pretty good.

I am at the higher dose of Zyprexa- and I realize that when I started going to yoga and doing things it was at the higher dose, and that when I went back down to 5mg I stopped going to yoga. So I am back at 7.5mg. The only way I can do this is to take all of my Provigil at once in the morning, instead of breaking it up- but it seems to be lasting enough of the day that it is okay. And I am not taking any klonopin, except for that quarter of a milligram at night to help me to sleep. I think klonopin is destabilizing for me- I get rebound effects. I hope that I can get off of that last little bit of klonopin.

I don't even want to be taking Zyprexa- but if I am going to be taking it, I want to take enough of it to really make me better. Otherwise, why bother? I'd love to take no meds- but I think I will die of old age before I could wean myself off of all of them, so I am stuck with them. I am going to use them.

I have a lot to do today. I am doing laundry. I have to do dishes. I have to go visit my dad- and it is over an hour's drive each way. I have to go in to do paperwork. I have to work on my inservice. And I have to write my Provigil appeal.

The price has dropped into the 200's again at Costco- but it is still much higher in the other stores, and I don't want to be at the mercy of market forces. It would be so nice to have the Provigil covered. Especially as the deductible for my health insurance is going up by $500 next year and my psychiatrist fees won't count towards it. And I still haven't decided if I will continue with therapy- my therapist will not be covered and I hate switching. I hate trying to find someone good. And trying to explain my life to someone new.

Saturday, November 29, 2014

Hard days

I have been overly emotional about some things. And just had some really hard days. I am thinking about what my psychiatrist said in jest- that meds can fix everything- and wondering if meds could do more than they are doing. And wondering what there is to do for the things that meds cannot touch.

I think some of my trouble is anxiety as well as depression. But klonopin does not seem to be a good answer these days- it makes me too sleepy. If they could make a klonopin that wasn't sedating, I would be a willing addict. Two nights ago I couldn't sleep and in the morning I was so anxious that I took klonopin early in the day- and just a smidge- but got so tired I thought I'd have to go home sick. But a second cup of coffee seemed to work to get me through it, and then I was functional.

And that was good- because I had a very interesting patient in the afternoon- a stage II tendon Hunter Rod tendon reconstruction patient 2 days out from surgery. So I had to take off the surgical dressing, clean things up and do some dressing changes, and make a splint. And get him started in his home exercise program.

The weekend is going to be a lot of paperwork and preparing for an inservice. I an giving an inservice on screening our patients for cervical problems that might be causing the distal symptoms that they present with- so that we can refer to the PT's. And leading a discussion on a journal article on the treatment of compression neuropathies.

I am also spending money! I am giving in to the black Friday sales (although I have not set foot into any store). I have most of my Christmas/birthday shopping done. Our family has a lot of December birthdays. I also bought a few work tops for myself and a set of hypnosis CD''s on procrastination. It came bundled with one on "mental toughness" so I am getting that too.

I am glad it is the weekend. So much to do.

Wednesday, November 26, 2014


I am feeling sad today. I am trying to keep it in the moment, and not to project into the future. I have reasons to be sad. A lot of reasons. And I am lonely. I really need to get out more.

I don't know why this makes me feel sad- but I am going to visit my dad in rehab tomorrow. I am planning to bring Thanksgiving food. But my step-mother, and now my dad, keep telling me not to bring food, he will have turkey for his dinner there. But what about me? What will I eat? And what about having a shared meal? I thought that was the point. Now I don't even want to go. I'm not going to bring food just for myself.

Plus I am under orders from my step-mother not to bring up the impending breast biopsy. Not that he's the best person to talk to about it- she actually is, she has had breast cancer. I can't talk to my mother about it- she told me not to do it and to read Suzanne Summer's book on alternative treatments. Plus she is so overwhelmed with taking care of her mother right now- that she really can't focus on anything else.

I'm not afraid I'm dying. If there is anything there, which is unlikely, it is extremely early. I am afraid of the treatment if there is anything there. I want to keep my breasts. I don't want radiation or chemo. And- I just thought of this today- afraid that I will have to stop my birth control pill and not be able to go on HRT after menopause. Afraid of what that will do to my mental stability.

I do happen to know that Suzanne Summers is taking bio-identical hormone replacement therapy. But she also had a mastectomy. So she didn't just do alternative stuff.

It is the waiting that is the hard part. But at least at work today I forgot. I saw all of my patients by 2pm, at least the ones who didn't cancel because of the snow. I am really hoping that I can get my car out of the driveway tomorrow morning for the local Turkey Trot. It all depends upon when my landlord plows, or if it all melts overnight.

I also decided today that I am going to change my hours at work a little in the interests of patient care. I will have to see if that opens me up to different evening activities or support groups. And I am going to make that change soon- because I will be looking for a new therapist very soon and will need to know my hours.

Tuesday, November 25, 2014

But medication can fix everything!

I know that my psychiatrist was making a joke, but he smiled so brightly when he said this that for a moment I thought he was serious. And I think he thinks this more than I do. Meds don't give you a life- at best they make it possible to do the things to have a life. But if you have been sick for many years, if you lost the life you had- or if you got sick very young and never had a great life to get back to- then meds are not going to fix this. If you have forgotten how to be a human being, or never learned key skills growing up, meds are not going to fix this.

My psychiatrist might say I'm dysthymic. He was really pushing to see if I needed any med adjustments. And I'm glad he did- sometimes when I am telling myself that this has nothing to do with meds it is me falling into depression and justifying to myself why I feel so miserable. But I know that it is impossible to medicate away this dysthymia for any length of time, if that is what it is, and I'm not sure that it is.

Anyway, things will stay the same for the next three months. At least that's the plan. That is what my prescriptions are written for and that is when I see him next. But a lot can happen in three months.

Today I am totally exhausted. I got up early to see my psychiatrist and then had my late day at work. Only to find that I wanted to be on the internet looking up breast calcifications and biopsies on google. There is also a possibility that I will get in to see the surgeon tomorrow- if anyone cancels due to the snow they will call me. Otherwise I have to wait until December 9th. It is a long wait.

Monday, November 24, 2014

It was only a matter of time...

I knew these mammograms were a mistake. Even the research can't tell me if I should be getting them. I only started getting them to appease my PCP. I knew the false positives would start coming- I just didn't realize how soon.

At my first they found nodules in my left breast which meant every six months I had to get a follow up mammogram and ultrasound. I thought my right breast was doing okay. Today it let me down. They found calcifications in it- and they want me to have it biopsied. Even though it is most likely benign. Most likely but not guaranteed.

So ironic- I was feeling so good today. Finally back on Provigil (and realizing it is the drug for me). You would think that at least this could hit while I was a little more ambivalent about life. But I am not really worried, I don't think it is anything. I just have to do this because- well, that is what you do I guess.

And then I started reading about the procedure, and thinking, my poor breast! It is not exactly like when I had the mole on my back biopsied.

So the imaging center had a patient care navigator- who was in the room with the radiologist- and made the appointment for me with the surgeon. I don't have an appointment for a consult until December 9th, so either they are very busy or they aren't too worried. The biopsy isn't even scheduled.

I forgot to ask if I am done with the ultrasounds on my left breast- they said last time I probably would be if things continued to stay the same, and per the ultrasound tech they stayed the same.

And tomorrow I see my psychiatrist.

I'm just bankrupting the healthcare system. No, wait- I've got a high deductible plan. It is bankrupting me.


Sunday, November 23, 2014

The trade-off

It is my second day of the lowered Zyprexa, I am down to 5mg from 7.5mg. I woke up and felt awake before my morning coffee. My head feels clearer. Even my depression feels better. The only thing that isn't better is my anxiety- that is a little worse. But that is the trade-off. I realize that there is no good way to medicate my anxiety without substantial trade-offs. The sedation, mental dulling, cognitive side-effects, etc. For now my anxiety is small enough that I can deal with it without more meds. That may not always be true- I am sure I will continue to have my times when I need my klonopin or more Zyprexa.

I'm trying to figure out what to do re Nuvigil or Provigil and which to stay on. Maybe a smaller amount of Nuvigil would work. I really liked the once a day dosing and fewer mood swings- but I think 250mg was too much and made me irritable (although I also needed that much on the higher Zyprexa dose). Half a pill doesn't seem like quite enough, though. But then Provigil, at the moment, is cheaper. I think. But for how long?

Next weekend I am going to write my appeal for Provigil- I have 60 days. I am guessing that they won't care what I say, but I have to do it anyway. If Provigil gets approved, I will obviously go with Provigil. I have had too much going on with my dad to do it sooner.

I wonder if there is anything that this "health coach" that my insurance company is offering me could do to help me with my appeal. "Health coach" is really misleading. They only want you to be healthy in ways that make you cheap to insure. If it helps your health to take an off label drug or to get a medical test more often than their guidelines say, you are out of luck.

I always wish weekends were three days long. Yesterday I was visiting my dad. Today I am doing laundry and I have to drive to go buy my Provigil. I also have to go into work to do notes- but I wish that could be tomorrow. Only it can't be, because tomorrow is Monday, and I will have new notes to do.

Saturday, November 22, 2014

My dad's in rehab

Yesterday my dad got transferred to a rehab hospital. I visited him today. He is still very tired, but doing much better. The OT in me observed him transferring from the wheelchair to his bed for a nap- with an aide of course- but he really didn't need much help. He is going to be okay.

I may be spending Thanksgiving with him- I think my step mom wants to spend it with the rest of her family who is all coming here. I mentioned that I could bring catered food. She didn't think that was necessary, as they would probably be giving my dad something turkey for dinner. Well, what about me? Plus, hospital food is not the same. But she is not a foodie.

I am still figuring out meds- isn't that the story of my life? I have been just so irritable- even on the higher Zyprexa- and I can't take it anymore. I think it is the nuvigil. Plus I am down to my last pill. I have to go to the pharmacy to pick up Provigil- but didn't make it there today because I was so wiped out from all the driving to see my dad. Anyway, I went down on the Zyprexa last night hoping that if I did I could get by on half a Nuvigil today. But I was really sleepy, and only survived on lots of coffee. It wasn't enough. Now my mood is bad and I don't know if it is the Zyprexa or Nuvigil.

I have half a Nuvigil left for tomorrow morning- then I really have to get my Provigil. It is a drive. But the price I was quoted is not too bad. I swear, this is like watching the stock market. I am going to try to stay down on the 5 mg of Zyprexa. If I stay at the higher dose I am going to wind up 300 pounds.

I did one good thing today- I registered for our local Turkey Trot. Well, I do the walk, no the trotting. But still, it is better than doing nothing but driving and eating on Thanksgiving day.

Monday, November 17, 2014

Back at work, it feels strange

I spent most of the past 5 days in the hospital with my dad except for Saturday. He had his surgery in the city so this involved staying in a hotel two nights and commuting the other days. It was very draining. He is still in the hospital, I went back to work today.

His heartbeat never came back enough after the open heart surgery, so after 5 days on an external pacemaker, he had a pacemaker placed today. The surgery went well. He could finally get out of bed today- they had been keeping him in bed. Hopefully he will get out of the ICU tomorrow and to a step-down unit. 

I was with my dad yesterday when the electrophysiology resident came by. My dad made a funny joke. He said, "I knew I needed a plumber. I didn't know I needed an electrician."

Meanwhile, I just feel so exhausted today. It is both physical and emotional. I just came home and ate- that is another thing I am doing- I just want to eat- and I don't know if it is the increased Zyprexa, the situation, the change in seasons (and no light therapy for the past week). I have been craving macaroni and cheese- which is something that I hardly ever let myself eat. Pure comfort food. Of course I didn't eat it- I didn't have any and didn't want to stop. And wanted to eat something healthier anyway. The problem is, I ate a few healthier things. 

To add insult to injury- I got a letter from my insurance company today offering me a "health coach." They say it is based upon claims data and diagnoses that are reported. I got a similar letter last year. Unless my health coach can tell me how to get provigil or nuvigil paid for, I am really not interested. My insurance company is not interested in my health, they really are not. They only care about their bottom line. I really think it is a conflict of interest to have an insurance company giving health advice.

Just like it is wrong to have a computer program giving medical advice. To get $100 added to my HSA each year I do this annual online health assessment. Only to be told that I should be on a low sodium diet. Which I really shouldn't. The effexor puts me at significant risk for low blood sodium. And a low sodium diet puts me at risk for lithium toxicity. Plus my blood pressure is well-controlled. One year I actually e-mailed them, but got no response. 

I am just writing because I am hoping that if I wait long enough the food that I ate will tell my brain not to be hungry anymore- but it is not working. 

Saturday, November 15, 2014

Catching my breath

I spent the last three days at the hospital with my dad. He is still in the cardiac intensive care unit, and probably will be there until Monday. The surgery went well, but then there was some drama the next day when his external pacemaker shorted out- once very briefly, and the second time big time. Both times I was standing at the bed (maybe I am bad luck?) and saw his eyes roll back and then go unconscious. It was pretty awful. But he was hooked up to a backup pacemaker which they were able to get going pretty quickly.

So far his heart is not beating without the external pacemaker- and it can take 3 days for the swelling from the surgery to go down and know if it is going to come back. But so far it looks like he will need a pacemaker, and they will probably do it Monday. I'll be back at work then.

Today I am just trying to recover and do some things that need doing- like laundry, a haircut, etc. And sleep- I am so tired. Tomorrow I will go to the hospital again. This is my first day home. Wednesday night I spent the night in a hotel in the city with my step mother, and Thursday I stayed in a very cheap hotel by myself so that I could be there early on Friday- and she could do later in the day. And last night I spent at my dad and step mother's. I was too tired by the time I got there to drive home. Today she will go and be with him, and tomorrow I will go so she can have a break.

My dad is just incredibly tired and weak. They didn't want him out of bed yesterday but they wanted him to move- so I tried to get him doing some heel slides and some punches at shoulder level- but he was too tired. I think he is going to need to go to rehab. I know the good acute rehab places around here, but I don't know the good STR places- and I don't know if he can do 3 hours of therapy, plus medicare doesn't consider cardiac to be a rehab diagnosis so it is always hard to get those patients into acute rehab.

I have to find a good STR place for cardiac rehab.

Monday, November 10, 2014

A better Monday

It was a good Monday. I also think that the combination of 7.5mg of Zyprexa and 250mg of Nuvigil is good. I can't help but wonder if I took 5mg of Zyprexa if I could take less Nuvigil (and cut my pills), but I don't know if I want to experiment right now. I have been so bad so recently.

This puts my in a bind. Do I appeal the Provigil denial? I think the Nuvigil is more even and I don't have the ups and downs I had with Provigil- and I am very sensitive to changes in blood levels of  meds. Plus I am falling asleep better- some days I would take my 2nd Provigil late enough that it would make it hard to sleep.

I think I will try to stay with Nuvigil. Maybe when I see my doctor we can try for authorization. Maybe I will just pay out of pocket. My fear is that they are going to jack up the price before it goes generic in a year and a half. Often they do that with drugs. I wonder if there is a way to stockpile Nuvigil?

Meanwhile, I just want to stop thinking about meds.

My dad's surgery is coming up very soon- Wednesday. Which leaves me with all of tomorrow to get caught up with my notes at work. Such is life. But paperwork went better today. I hope it will continue to do so.

Saturday, November 8, 2014

Nuvigil + Coffee = Anxiety (for me)

I think I am going to have to give up coffee if I stay on Nuvigil- or at least switch to decaf. Coffee is one of my favorite things in the world, and it usually has more of an antidepressant effect for me than an anxiety-producing effect (unless I really overdo it). But it really seems apparent that my anxiety kicks up a notch, and I find myself reaching for the klonopin, after I have my coffee. And I drink it twice a day.

It wasn't as bad on the provigil- perhaps because I space out the doses. Nuvigil does feel a little bit stronger. Although on the higher dose of Zyprexa, I kind of need that in the mornings to get me going. I am hoping that higher dose isn't for too long- but I am still too vulnerable to go down I decided this week. When I was doing my meds this week, I was trying to figure out what dose of Zyprexa to put into my pill box.

I still haven't called about the appeal for my Provigil- I have been wondering if Nuvigil is better. But mostly I don't know when to call as I am at work during the day and don't think that there is anyone to talk to outside of work hours. At least anyone with the authority to do anything. I still don't know anything about the process or if I have any chance of getting approved.

I am looking to find a new therapist, one who takes my insurance. I don't really know how to find one, other than the psychology today website. I think it is probably in bad form to ask my current therapist for a recommendation. But I am totally not changing because of her, I am changing because of changes to my insurances. I suspect that she may have other clients who may leave too, as my hospital is a big employer.

I want a therapist who has some experience in DBT or ACT or some kind of mindfulness-based therapy. I want a therapist who has experience working with people with serious mental illness and won't freak out when I say how bad things are.

I got a notice in the mail about getting my mammogram. And I want to skip it. I can't imagine doing as something life-affirming as looking for cancer and maybe treating it so that I could live longer. But if I don't get it, my PCP will just hound me, and I really don't want to explain all of this- so maybe I will just go.

Tuesday, November 4, 2014

I really don't understand drug pricing

Last week the price of generic Provigil had fallen at several pharmacies (after skyrocketing the week before at Costco). My two pills were now about the same price as one Nuvigil- all would be well I thought as the price could only go down in a few months. It's generic, right?

Well today I go on my website- and the price of generic Provigil is up again. And by quite a bit. Nuvigil is now the much better deal, at $520 plus a $50 off coupon- but I was hoping not to have to pay this much. I think this weekend I will try cutting pills and see if I can make do with less. Although a part of me tells me that this is not a good idea.

Nuvigil generics could be on the market as early as June 2016, but I am not holding my breath. The company paid off the generic makers to delay the Provigil generics. And I am not expecting the price to come down anytime soon. I am just hoping that they don't jack up the price of Nuvigil as it gets near the end of its exclusivity, like they did with Provigil.

I actually like Nuvigil- I love the fact that I don't have to take it twice a day. There is nothing that makes me feel more like a drug addict than taking out my pill bottle at lunch and downing a pill. Plus I can too easily forget. But if Provigil were to get cheap, I think I'd go back to that- at least until Nuvigil falls in price (which will be a long time from now).

The two big things I will have to give up are moving to a full-size apartment- and being able to have a cat. And my therapist. I might have had to give up my therapist anyway with the change in insurance. But I can't afford to pay it all out of pocket, especially now. I will still have a high deductible plan, but at least my therapy sessions will count towards my deductible if I see someone in network.

I never thought that I could make as much money as I do and still feel- no, not poor, but struggling. But I live in a very expensive area. Hospitals probably pay the lowest OT salaries. I have a high deductible health insurance plan. I have medication I have to pay for myself that isn't even covered. My therapist and psychiatrist don't take insurance. I am still paying off debts.

Monday, November 3, 2014

For a Monday, it could have been worse

I had a so-so day. I was in a bad mood in the morning but felt a lot better in the afternoon- just very tired. A lot better than yesterday. For a Monday, and given what my mood has been recently and all that is going on, I can't complain. It helped that I had a pretty manageable caseload.

With the time change I am ready to go to bed already. I brought notes home, but I will do them in the morning. Tomorrow is my late day- I don't go in until 10. And I have to do a load of laundry and go walking before work. Maybe I will vote. Usually I do. This year, I just can't get into it. I really haven't followed my state politics at all- I haven't been following politics very much (for me). It just turns me off too much.

This morning, when my depression was worse- I was feeling guilty about being depressed. Because of my dad and his upcoming surgery. I felt guilty for not being sure I wanted to be alive- when other people are sick and want to live. And that is really why I can't do lymphedema therapy. I can't be working with cancer patients when I am half suicidal half the time myself.

I put in my PTO for next week- I am taking 3 days off. The surgery is on a Wednesday. I won't see much of my dad that day- he will be out of it. Initially he goes to cardiac intensive care, then to a step down unit as his condition allows.

It was not too much more than 2 years ago when I was taking time off for my dad's aortic aneurysm repair surgery. And my gift to him was keeping myself together through the surgery and for a couple of weeks afterwards- I was deeply depressed. Two weeks later, I think, I was admitted to the hospital. I really hope this isn't a repeat.

Saturday, November 1, 2014


I thought I was expecting it, so I thought it wouldn't hurt so much. I was wrong. I got the denial letter in the mail today about the Provigil, and it seems I am not as strong as I thought. I still feel like it is a personal rejection, like the universe wanting me dead. I still find myself thinking I will never pay that much for a pill- even though I had decided that I would.

The letter talks about an appeal, and I don't even understand that. It talks about whether your insurance allows for level 1 or level 2 appeals (I have no idea). It gives a deadline for written appeals- but also a number to call- is that instead of or in addition to? And it doesn't mention what kind of documentation they might want.

I can't decide if it will make me too crazy to try to appeal. Or if I will feel even more depressed if I don't. I'm not optimistic about this- all the denial letter did was lay out their coverage criteria based on sleep apnea and fatigue that isn't resolved after faithful compliance with a CPAP machine.

I took some extra Zyprexa. I am trying to read a book on my kindle, 2084, which doesn't talk at all about health insurance. Just global warming. I was trying to find a movie that was a little more light-hearted on itunes that I wanted to watch, but couldn't really decide on anything.

My insurance paid for my Abilify when it was over $1000. But they won't pay for a $520 medication that is already generic and will be going down. Because of that FDA approval thing. But in psychiatry, so many meds are used off label. Even tegretol is not FDA approved for bipolar. And klonopin is approved as an anticonvulsant.


Perhaps this means I am insufficiently depressed- that I can focus on something other than myself. In this case, I have been watching sci-fi movie trailers, and I can now pick apart a movie before it has even come out.

The thing is, "Interstellar" used to be the kind of movie I lived for. If I was a teenager again, I'd love it. Being a physics major kind of cured me of my love of these kinds of movies. I ask too many questions.

From what I can tell from the trailers, the earth isn't doing very well, at one point someone tells the main character that his daughter is the last generation that will live on the earth. Scenes of fires and barren farm land. But then, I think, faster than light drive is discovered, and a ship is built. Astronauts are sent to look for habitable planets. I will assume that they find them.

But then what? The trailers don't tell me. I don't see how a sizable number of people could be evacuated from the earth. That would just be too energy and resource intensive. And what would you take? What plants? What animals? What microbes? Could we even set up a functioning ecosystem on another planet from scratch and not crash it pretty fast if we don't know what we are doing? And if we knew how to do that, we could probably manage our own a lot better. There are some geoengineering techniques that have been proposed to deal with climate change that are pretty low-tech compared with interstellar space ships.

So I am sure that I will see the movie- but I already have my reservations about the premise.