Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Saturday, November 30, 2013


Last year Thanksgiving was wonderful and very special.  We were on the Outer Banks and we love it there.  Anne was at a very funny age.  Everything was great but it wasn't a standard Thanksgiving.  The year before that Dr. Mind and I agreed there was no way I was participating because I had just gotten out of the hospital with lithium toxicity and still felt like crap plus had no slept in several days between hallucination and the hospital messing up my psych meds, so I skipped it.  The year before that I had whooping cough and wasn't allowed near Anne (and other people weren't really going to want to be with me; I was still pretty sick).  The year before that was just my mom and I and we ditched all tradition and had a delicious roast recipe that I have never cooked again because the next day I felt funny at work and then we kept sending really sick patients to the ER and my co-wokers teased me that it was making me nervous.  Until I said it started that morning.  Then they stayed far away.  I was so sick I was in the ER twice for fluids and rule out appendicitis and then had to see Dr. Mind twice more in the next week.  So it's been a long time since Thanksgiving was normalish.  This year it was my brother, mom and I and that's pretty normal.  My sister's family alternates grandparents so next year will be more lively but it was nice with just the 3.  Not too loud, just the right amount of food, etc.

Friday my mom and sister went shopping for a while and then Anne came up.  We've just hung out mostly.  We went to a crafts show today and later made a craft I've been waiting to do with her for a few months.  She's got a cold and gets tired pretty easily right now so lots of reading and playing on the ipad happened.  She played with most of her toys at some point, she just wanted a lot more quiet time.

My mouth seems to be healing well except that anything cold is extremely painful for 5-10 minutes.  He told me that the way this tooth died isn't the typical pattern and that it gets really irritated throughout the tooth (not just the root canals) and the surrounding gum tissue as well.  I think that the ligaments between the teeth also were irritated when we started and drilling through porcelain and metal in my crown had to have vibrated that pretty well; the drilling was pretty ugly sounding.  So I think that's what hurts since the tooth can't hurt anymore but I hope it stops soon.  I'm cheating again and using ibuproferon cautiously until I see some sign of lithium issues (I always get sick so I'll know) because I think rather than just suffering through it and not drinking enough, drinking only warmed drinks, or taking vicodin when I only have pain a small part of the day, are not as likely to help as reducing the inflammation.  I'll call the dentist next week if I have to but I want to try to control it first.

I forget what else I wanted to say.  I just somehow choked on my millionth cup of tea and it wiped out my brain content or something. 

Tuesday, November 26, 2013


I feel like someone punched me in the face today. Fortunately that did not happen, I merely had a root canal.  After the last few days when the pain radiated clear to my shoulder and I took contra-band (not supposed to take with lithium and especially now because my level is up) ibuproferon because nothing else helped, I was pretty sure that nothing the dentist did could top that pain.  And I was right, but I am sore.

Last week he told me that since this tooth was already crowned that he would go in through the crown and that it would or wouldn't survive the procedure.  He also said that if the tooth was in too bad of a condition from the deep crack it already that I would have to have it pulled.  So obviously the best possible scenario was that I would leave with a crowned tooth and no need for a new crown.

When I got there and told him about the pain he started tracing the swelling and the pocket of nastiness under my gum.  He did the drilling, which is unpleasant sounding going through metal and porcelain (you can hear bits fly off and the drill is slowed by the materials so it sounds really ominous) and found what he had expected and hoped for (although not the least painful scenario).  2 of my tooth's roots had simply died.  The last was putting up a valiant fight and so it was infected, swollen, and very irritated.  In fact it was irritated enough that I kept needing more and more numbing and there are limits to how much of that I can have with the MAOI.  Finally he said that we had about 20 minutes before I felt pain and he was going to get it done.  He did and then they put a filling on the top of the crown and gave me antibiotics and painkillers (this was partly because of the holiday and partly because of how irritated it already was in there; usually you get out of these things).

The pharmacy was a bad experience. First someone made a left turn into it in front of me and didn't pull all the way into the parking lot to let someone out.  I was stuck blocking the traffic in a busy, fast area of town.  I honked; they ignored me.  I honked again, twice.  They let someone pull out in front of them.  I was less than pleased. They didn't ask if i was staying, just said 25 minutes.  I got bored and went back to the pharmacy where they had my antibiotics but no painkillers.  They said they were out of the dose of vicodin I was given but I could have some tomorrow after 3.  Out of my drooling, drooping mouth I pointed out that I had about 30 minutes until it hurt a lot and that it would be best if I had pain meds now and asked them to transfer it to across the street.  Lo and behold someone found vicodin for me but they made me wait another 15 minutes.  I couldn't figure out why nobody paged me in the beginning to explain the situation and fix it immediately.  For some reason they chose to call my cell phone instead of looking for me in the store and since my phone was in the car I didn't get the call.  It was really annoying since it should have been rapidly resolved and they should have checked "the back" before saying they didn't have any.

So I got home and slept most of the afternoon and have been trying to distract myself from the pain for a couple hours.  It's not terrible, in many ways not as bad as the last 2 days were, but my gums are really irritated from the infection and dental tools and the swelling makes it hard to not bite down on the tooth which is a little elevated right now.  But I just realized that I forgot to take more vicodin and I've been due for a while so that would be the reason it hurts.

I am just so glad that this is over and that I still have a tooth. I am newly on dental insurance and couldn't have work covered until April so this is all out of pocket.  I'm so glad I'm not paying for a crown as well. 

Wednesday, November 20, 2013

Oh boy

I got my paperwork for medicare a month ago but haven't been brave enough to search for plans until today.  I didn't thoroughly look and I avoided the drug plans but I did find out that I can't get a Medigap policy.  That means that all co-pays come directly from me.  I had hoped to pay for the Medigap to reduce my costs a bit since I have to pay 20% of everything that isn't inpatient and inpatient has high costs too.  Ohio is behind in requiring Medigap for disabled people and while I know it is possible it isn't possible in this county. 

This is going to make some decisions for me.  I need to have ankle surgery and I need to do it before too much more time passes as my ankle is turning in more and more and my achilles is getting tight.  As I understand this surgery it requires quite a bit of physical therapy.  I am going to be better off to be on home health to get that than to go to outpatient. Which is probably fine; I probably will be homebound then anyway more or less and it pays 100%.  But I just never thought that this would be something I'd need. 

I wish there were ways to know what exactly co-pays will be with Medicare rates.  Going on Medicare is really hard without knowing that because I can't plan ahead.  I have no idea if I'll get any assistance from Cleveland Clinic if I have a huge bill (surgery) as I'll be applying for assistance as an exemption instead of just qualifying as I do now.

I hate this waiting thing.  I could do a managed medicare program but I need to know if Dr. Body participates and if the whole thing is a good idea; those can be huge rip-offs at times.  I know a lot about it but not what to do.  So I guess I do the easiest to understand way this year and change next if necessary.


Tuesday, November 19, 2013


I saw the dentist today.  My tooth is not infected but based on several things he feels that it is dying and it is time for a root canal.   This was further indicated by the 10/12 days of migraines lately.  He thinks it is likely that the tooth is contributing.  So, between the supplements I'm slowly adding to my daily pile o' pills  (and for the next week or 2 antibiotics) there is hope that I'll get some pain relief soon without needing too many $35 pills (before the discount I hope still works).

The tooth may not be salvageable.  It has a crown already because of a deep crack from grinding.  If it is too destroyed in there I'm going to lose the tooth which will lead to further expenses in getting some kind of fake tooth.  That disturbs me; we already are anticipating dental troubles and this is kinda my fault a little in that I'm not good at wearing my bite guard.  That is only partly my fault and partly it is a consequence of sexual abuse and the dentist knows this (without an actual discussion; gagging just goes with it) but at the same time I know my teeth are at risk because of the constant dry mouth along with grinding and I can't afford to start losing them now.  If it can be saved there is still the really fun question of "can this crown handle drilling?".  If it can't I'm out about double the money for a new one. 

So the point of that is that it is going to be a long week of waiting to see what happens but also I am so relieved that there is something wrong that might be fixed.

Otherwise I discovered today that after working on eye contact with Dr. Mind and really with ANYONE for the last 3 months I found the one person I will make eye contact with.  The dentist.  I have no idea why.  He is wonderful but hardly my best friend.

My house has electricity!  Some lights turn on and the microwave is in place and presumably works.  This is very exciting.  It was nice to finally really see in there.  By the time the workers leave it's generally getting later and dimmer.  So this is a nice step forward.  Now for the other 200 steps (including water, heat, and a toilet) and I may get to live there in 2013.  It's been hard lately because there have been several things that have not been done correctly and have required re-doing.  The one making me the most angry is the storm door.  I bought it open box and the directions were missing.  My mother offered to print them off and the workers said they were fine.  The first day they didn't put the hydraulic things that make the door close right on.  This door has 2.  The top just opens and closes the door; the bottom does that and has a button on it that is how you hold the door open.  Both pieces were there after the door was first installed.  I saw them.  Now the top piece is there, the door doesn't close unless pulled shut and the other piece is missing.  They say "maybe it wasn't there".  No, it was.  I think it got thrown in someone's truck thinking they could get away with not doing it right.  I had the same door at my old house though and so I know what is wrong.  But we had to order replacement parts for $35.  My mom is most upset because way back I told them I wanted white outlet covers and light switches.  Like a number of things I told them and gave them in writing and which are written on the floor plan kept by the company in the house they ignored this and put in almond which looked terrible.  Then my mom has to complain and have them redo things which they in turn are a bit annoyed about.  My mom has had a good relationship with  them for a long time but this time there are too many people doing the job and communication on their part has sucked.  I think the project has just gone too long.  It's only a few months from when my mom went to them for a bid initially and we're 3 months into construction of a tiny building.  It's frustrating.

I have to get my pills put away before I knock all the bottles off my lap making a huge mess.

Monday, November 18, 2013

All is not lost-medication redemption maybe

I saw Dr. Brain this weekend.  As always she is willing to spend time to make things work, which the neurologist didn't.  I don't expect her to, it just would have helped to be sure that I had a script I could pay for before sending me away for 3 months.

Dr. Brain tried pricing every triptan (migraine med group) and then cross-checking with my ability to pay.  They are all horribly expensive.  The best she found was still more than I could pay.  I left knowing that I was going to be able to buy about 1/month and hope I hit the worst headache with it.  She did clear me to take some supplements from the list the neuro provided and said another patient who has similar symptoms of bipolar plus similar med issues and migraines just started the same group of supplements and is doing well.  I had asked about magnesium in the past and Dr. Body wasn't thrilled because of my wobbly electrolytes.  But looking back at them I have stayed very stable at the low end of normal so I'm on magnesium now.  It isn't supposed to be a laxative dose but I will be cutting back on my prescription laxative tomorrow.  If it is handled ok then I'll be adding melatonin and Co-enzyme Q10, one at a time. 

When I got home I was searching for more information on the triptan and stumbled onto a website called www.internetdrugcoupons.com  .  If the thing works and there's no obvious reason for it not to then it is going to mean I can get 4-5 triptan pills per month.  The site has tons of offers for different meds, both OTC and prescription.  This one is really good; I spend $10, they will pay up to $100 and even gave me a link to find the lowest prices.  So I think for $30 I'll be able to have 4 or 5 pills.  Not the 10 she hoped for but something.

Today has been mainly headache-less, just a little bit so I can't say it's a free day but it is a better day.  I think today's could be sponsored by my toothache.  I see the dentist Tuesday to find out if I need intervention there.  I am hoping if I do he can do it that day because I don't want to spend a lot of time thinking about needing a root canal in a week or whatever.  I also think the toothaches add to the migraines.  And I am supposed to have the girls Friday so I want the thing done as long before that as possible.  Fridays are extra fun with the girls because my sister takes Anne to playgroup and I get rare 1:1 time with Geraldine.  Last time she slept nearly the whole time and I read while holding her.  That's not as much fun as playtime (or naked butt time which she thinks is hilarious) but after Anne has lunch on playgroup days she usually needs decompression time which is more baby time and then combination of baby and Anne time.  Anne and I have a routine now where we always paint her nails, we always work on letters because that is her big interest right now (last time she wrote half my name before being stumped by N), I try to bring a little craft project to do with her, and we are reading Shel Silverstein, usually while I'm giving the baby a bottle.  I have a great craft for her if I only can make myself endure the craft store which I desperately need to do tomorrow.  Soon we'll be making paper chains.

Anyway, I don't want to miss my big day because of toothache.  I don't plan to; I worked the day after my other root canal and that was so infected the doctor offered to show it to me and then said I was 1 day of hospitalization with sepsis.  This shouldn't be so bad.  I hope.  It's been hurting for months but got a lot worse lately. 

No other real news.  The work on the house seems to have totally stopped.  The inside is done except for electrical stuff, installing the toilet and getting appliances.  Everything that is still hanging is vital and halted completely, like turning electrical wires into outlets and things; finishing ductwork and the furnace installation; bringing the water line up to the house; finishing the septic system and connecting it; getting a hot water heater in; installing the garage door.  It's all vitally important things and it's so frustrating to see how great it looks in the living area yet I can't live there.  Hopefully this week people will pick things back up.

And that's it.

Friday, November 15, 2013

No wonder I was grouchy

I now have a reason for my grouchiness and removed post from last night.  I have: a migraine, day 2 and I've had one for 9 days of the last 11 including one of the worst ever last night; a toothache; and a cold with a fever.  Oh, and somehow I have misplaced my cell phone in my bed and I don't feel like moving to find it.

I also was looking for my thermometer and brought over a little bag that has toothpaste, a comb, etc. that I use when I travel.  Toiletries bag?  Whatever.  I had blown my nose and was sitting her wondering why it smelled like the psych unit.  That bag has absorbed the scent, probably from being in a dresser drawer each time.  How weird, a little way to visit 6N from my own home.  Yippee.

I have to find that stinking phone.  I need to refill my meds.  Looks like I'm refilling the vicodin since I sure won't be using much of the $400 migraine medication....


I posted something last night, now removed, about insurance in which I was pretty impatient with views other than mine and my lack of tolerance. I apologize. Yesterday was a very rough day and I wasn't fair. I did not say what I meant well at all and for that I apologize. Copyright 2006 www.masterofirony.blogspot.com

Thursday, November 14, 2013

Waste of time

I am writing this from an extremely grouchy place.  I got a migraine on migraine assessment day.  Unfortunately it was a very bad one and they kept shining lights in my eye.  Then I stupidly thought I could drive home before it got worse and that didn't happen.  It's still annoying me but doesn't seem to be getting worse.

I got good news, I thought.  I can take a couple of triptans to stop the migraines as long as Dr. Brain approves.  Unfortunately they didn't take the time to see if patient assistance would cover them and if I am eligible.  One company covers it but I'm just over the line.  The other company I'm eligible for assistance but the triptan isn't offered.  The one I was prescribed is $400 for a month's supply.  With a discount.  The other one is just as expensive.  So they sent me home with nothing useful except 2 free pills.Yippee.  That probably won't get me through the next 3 months until I have insurance.  Not trying these means that I will presumably not be eligible for Botox when I go back, because I think I have to have failed on these.  And perhaps in 3 months when I can actually try them they'll work. 

Three months is just so long.  I waited 4 months for this appointment and fought the migraines for months before that..  And essentially all it did was get me a diagnosis of migraines and a list of supplements Dr. Brain might let me try.  And one of the worst migraines I've ever had, of course.

I am so discouraged right now.  I don't know what I thought would happen really.  I was under the impression from my doctors that I would probably go to botox now because I couldn't take triptans.  But there are 2 I can take, which is great.  I won't be able to afford the co-pay on botox either.  I was hoping that I would get to try that while on patient assistance.  The dr. laughed and said that wasn't a charity care option because it is expensive.  I think she's wrong; it says any medically necessary treatment is covered. I honestly didn't like that comment much as it felt a bit like "oh, you're poor...well, that costs too much for the likes of you, too bad if it would work".  But I was so tired and in so much pain I can't really judge.

I am just so tired of having a throbbing head and I'm furious that I can't treat it because I am uninsured and not independently wealthy.  I have 20 migraines or more per month so the 10 treatments per month was going to not cover a lot.  With being able to afford maybe 2 pills per month (at more than I pay for any other 90 day supply of medication) and that would be a stretch this is pointless.

And so I wasted a day (it feels like that tonight anyway) and I'm still left not treating most migraines and knocking myself out with vicodin if I do "treat'.

Maybe if I just ignore it the migraines will go away.

Wednesday, November 13, 2013


There is a lot of information out there, and even on this blog, about side effects of psych meds.  One that gets ignored a lot is the damage to teeth.  Having dry mouth all the time is hard on your teeth. 

I am fortunate to have a dentist who is knowledgeable about psych meds because his brother is also bipolar.  So when I first went to see him and my front teeth had something like 28 cavities/pre-cavities because of years of vomiting from lamictal and lithium and then 6 months of vomiting daily from lithium toxicity, he didn't blink, he just fixed them.  My front teeth are great looking but they are mostly porcelain.  In the first week I knew my dentist I had those 4 teeth repaired and then numerous other fillings.  I was in their office daily for a week.

Since then I have broken 2 teeth by cracking them deeply, one clear to the bone, by grinding my teeth.  That happens with stress but it is also a side effect of multiple psych meds.  One tooth has a crown and the other has a root canal and crown.  That one nearly landed me in a hospital because my impaired pain tolerance (also probably medication related) made me ignore the pain until it was badly infected.  After that I got a bite guard but I have a hard time wearing it.  Everything dental is complicated by my gag reflex.  It's a common problem in people who have been sexually abused and I think that knowing that is why my dentist is so very kind about keeping things as calm as possible for my visits.  The tooth that just has a crown is fairly painful and I suspect that I'm going to be getting a root canal.  I have been having pain for a while but it has gotten a lot worse in the last week and tonight it is just painful and the gumline looks icky.  I don't know if they are in tomorrow but I may have to face it and go.

Stress injuries aren't the only problem though.  I am currently sitting here doing a home fluoride treatment that I am supposed to do nightly.  However it involves the stuff staying on your teeth for 30 minutes and I can't always manage.  But it is important because 2 of my teeth are losing enamel because of the dry mouth.  My dentist said he is "worried about me" because my potential for big problems seems to be great.  I have 2 or 3 more fillings that need to be done but I don't have insurance coverage for that until April.  I have a bunch of sensitive teeth, again probably from dry mouth.

They did give me a few things to help with dry mouth.  Taking a probiotic and calcium supplement can help.  I was already doing that.  I was told to switch to a toothpaste with baking soda (I'm using Mentadent) and if I could find a gum with baking soda that this would help a lot.  Apparently they used to give it out as samples but what they had isn't made anymore.  However I found some called Ecodent on Amazon and I chew it a lot when I'm not near water.  It truly does help although buying gum in bulk feels weird ($20 of gum???? But it is a lot of gum).

I'm a little scared tonight of what else can happen with teeth.  I hope I'm wrong about needing a root canal, especially since this tooth is already crowned and a root canal could potentially mean a new crown plus the root canal, all out of pocket.

I'm also afraid that I will start to lose teeth due to this.  Back when I had my root canal and 2nd crown someone at work asked why I wasn't just getting it pulled.  The simple reason is the dentist wants me to keep as many teeth as possible.  Between grinding and breaking them (I chip my teeth as well as cracking molars so I am constantly needing things evened out) and the weakness in the enamal it's a little scary.  The dentist also says tooth strength and enamal strength are partially hereditary and that's not a good thing either.

But mostly......psych meds hurt teeth.  Ugh.

Thursday, November 07, 2013

Insurance-My thoughts

This is a very divisive issue right now and I don't mean to offend anyone as I'm positive some of you won't agree with me.  But I am going to post this because somehow this insurance thing has become less of a narrative and more like 2 sides of a very tall wall.

I babysat my nieces today and happened to be there when the insurance statement for Geraldine's surgery arrived.  My brother-in-law told my sister and I the total and that they didn't have to pay any of it because they'd met their deductible/out-of-pocket, probably with my sister's surgery 3 weeks before Geraldine's.  My sister was horrified at the cost and then burst into tears.  "What," she said, "would we have done without insurance?".

It is part of the process of dealing with having a baby who needs major surgery when her life is measured in days, not months.  The shock hits over time and in the case of this diagnosis there will be ongoing testing quite frequently for a while and then tapering off over the next several years.  There is a 20% recurrence rate and some percentage of those recurrences will be malignant.  The goal is to catch any recurrence and remove it immediately.  All that a recurrence requires is one cell to have been missed during surgery.  This part, the part where she has a congenital condition and not "just" a tumor, that takes a while to hit because while she was waiting for and the recovering from surgery  those things didn't matter.  What hit my sister today is another variation on that: how could we manage all this expensive and necessary care without insurance?

The answer is that it could have been bad.  Realistically they could have gone to Cleveland Clinic and been in the same program I'm in assuming their income qualified them.  In other states there are Medicaid programs; Ohio doesn't participate although she might have qualified for something.  (Sort of like I have Medicaid....as long as I write a check for 87% of my income they'll cover other medical bills that month.)  However that is a very, very long trip for them and would have made a difficult situation much more difficult. Also, Geraldine's condition is rare enough that pretty much one surgeon in the state is experienced with it.  She needed that surgeon and she may need him again. 

Insurance means her parents don't have to decide if they can risk skipping tumor markers.  Insurance means that if she needs more surgery (and I pray every day that she doesn't) that it will be covered.  If there is a suspicion that she has recurrence she can have an MRI and be sedated and it won't bankrupt her parents.

The changes to insurance are also important for her.  It used to be that she would have had trouble finding coverage if there was ever a break in her insurance.  That happened easily when your insurance dropped you while you were in college as happened to me.  It was 8 months before I could get coverage through grad school.  There are no lifetime maximums.  That's important because she is a baby and if something bad happened she could hit a maximum while on chemo.  After grad school I had a job without insurance.  I nearly had to quit it because it was so hard to get insurance because of my history of plain old depression.  One company declined to cover me because I didn't have 28 day menstrual cycles.  Eventually I got terrible coverage with a $10,000 mental health deductible and no psych hospitalization that required me to pay 30% of medication costs.  By the time I finished the clinical trial I was in I knew I had to get group insurance and i did.  I was ready to leave that job but I would have had to no matter what because  30% of my meds was a big proportion of my income.

I don't think I've said much about this here but I am facing some of that type of coverage issue.  I'll have Medicare in February.  However there are a lot of deductibles and I realistically need an additional policy called "Medigap".  Unfortunately those policies are not required in this state to cover disabled people and when we are covered it is very expensive compared to someone who is 65.  I'm not sure what will happen with this.

I have been without insurance for nearly 2 years now.  I have made it through because of Cleveland Clinic's incredible charity care program; medication assistance from pharmaceutical companies, especially Astra-Zeneca which has given me something like $40,000/year of medication; a family doctor who trusts my judgment and has treated me via email for all of this time; and charity cards for pharmacies that have reduced my out of pocket drug costs.  I also have been able to use this one pharmacy chain that is local to northern Ohio and has drastically lower prices than others. 

I have made it through this uninsured time as well as anyone could hope to.  All of those things pulled together for me.  However I have wondered many times what would happen if there were an emergency.  Back in the spring I fell down a flight of stairs face first.  Had I broken a bone I could have made it to Cleveland.  If I'd had head trauma I would have been forced to use a hospital close to home.  If I had an asthma attack I couldn't wait hours to get to Cleveland.  When I was on vacation I had a severe migraine that my doctor said I should go to an ER for painkillers to break it up.  I couldn't because I would have had to pay for it.  I just got dental insurance.  It has a 6 month waiting period for fillings, crowns, root canals, etc.  I have a tooth that already has a crown that I suspect either needs a new crown or possibly a root canal.  If I can't make it until April that is 100% my responsibility.

While I am grateful beyond words for Cleveland Clinic's charity care program and all that it has helped cover I also know that this program comes partly from having higher rates for insured people. Which means that co-pays are higher and other people may struggle.  I paid co-pays for years and I know they aren't cheap.  Charity care is a stop-gap.  It is not a solution.

I'm the very weird person who is uninsured but not getting insurance through the affordable care act without paying a penalty.  My Medicare starts before that would kick in.  I can tell you that if I could choose Medicare and an ACA policy it would be the ACA policy.  I also can say that I am glad for the changes that are coming.  Not all are good. Of course they aren't.  But if no new mother cries ever again because she knows that many babies are born with much worse conditions than their own child and these babies are not covered by insurance and consequently don't receive the absolute best care imaginable, which they deserve.  Every baby should get the surgeon who operates on their rare tumor the most.  Every adult should not live in fear of the asthma attack or injury that requires use of the local hospital (which I hate anyway; awful experiences and awful care, but in an emergency you sometimes have no choice; I always should be at Cleveland Clinic because of my MAOI/psych med issues but that's not realistic).

I know our country isn't done with this fight.  There are many sides and like most people I do see good and bad.  But today was a lesson in gratefulness for something that seems so basic: an infant had a good surgeon cutting into some tender tissues and skillfully removing a large tumor, and if it grows back the skillful surgeon will repeat this.

Wednesday, November 06, 2013


I am still not doing very well.  My moods change rapidly and drastically and underneath is a depression that makes me want to sleep all the time.  The combination of time change, med change and time of year just weren't good. 

I kept telling Dr. Mind "I know my light box is in a box labelled with that.  I don't know why I didn't keep it out.  I need it."  He gently suggested doing whatever was needed to retrieve it ASAP.  My mom and I went to the storage unit and I dug around and found boxes from the right part of the house but not any that said anything about the light.  Finally I gave in and opened "medical supplies", which translated into "asthma gear for when I'm actually sick".  At the last minute I opened "items from chest" and there, clearly NOT labelled anything relevant to SAD lamp was the lamp.

So now I have that one part of the way out of this. The only problem is that I use a special lamp to prevent mania from too much light at once.  I couldn't even try a light until this kind came out.  It lets me adjust the intensity and time the light is on and I gradually increase them until I find the right mix between agitation and depression.  That can take a few weeks or a month.  So that solution is going to be slow.

In the meantime everything is frustrating.  I want to be on my own again.  I want MY mattress.  Oh do I want my mattress.  I want my cats to have space and I want to feed them on a normal routine so that the old one eats more.  (Here they eat in the bathroom and she is nervous about the toilet flushing or water running so she doesn't eat enough).  I want to be in a bad mood without explaining it.  Etc.

If I weren't so tired some of this wouldn't matter.  I know that.  But I AM this time and I really just want to sleep, not apologize from being grouchy all the time, not try to explain why I am cycling. 

Tomorrow is my day with my nieces.  It will be good for me but I dread the fatigue at the end of the day.  Apparently Geraldine wants to be held more this week because she has a stuffy nose and I know that makes things much harder with Anne.  Geraldine is also shifting her sleep patterns from sleeping all morning then playing for a bit in the afternoon and taking shorter afternoon naps to being more awake in the morning and sleepier in the afternoon.  Anne though is excited that I'm coming and that's good.  Last week was a little rough with her so I'm glad she wants me back.  It's hard that all her adults are operating on different schedules right now.

Anyway, I should work on sleeping.

Friday, November 01, 2013

That's the end of that

Last night I didn't take any topamax.  I wanted to see what happened if my blood levels dropped off significantly.  And what happened was what I didn't want to happen and yet did. 

It looks like the paranoia and maybe the mixed episode was the topamax and not just my brain.  With a lot less in my system I felt a lot better today.  Little to no paranoia, manageable mood swings.  And at this time of year manageable mood swings don't bother or surprise me, especially this year because my SAD lamp is packed in my storage unit. So I guess I'm done with topamax unless things happen in some order that makes Dr. Brain agree to re-try it in a few weeks.  I don't think that's likely.  Paranoia to the point I'm scaring myself is a pretty good sign there is a problem.

I'm trying to look at this as it was a nice 6 weeks followed by one not nice week and it's hard to tell where my mood will go at this point.  Maybe I'll be ok.

It's stupid but I most hate that I have to tell Dr. Mind this failed.  He has been so excited for me.  6 weeks without major symptoms has been such a huge break compared to the last few years.  He really probably was too excited, offering me the chance to decrease sessions, when it had only been a long stable period if you compared it to the last 2-3 years. 

I'm hoping that I will not get significantly worse.  I'm sure that there will be some changes but I'd like to be able to keep working on the more advanced counseling topic we've been trying to handle lately.

I spent the day with my nieces.  I had the baby alone for 2 1/2 hours which was fun.  She slept most of that time but she is developing a personality when she is awake and she is just so sweet and easy.  Her sister was never easy.  Geraldine's mom was going to be back just about nursing time and asked if I could try to hold her off without upsetting her.  She made it over half an hour of hungry with a pacifer, some books, a couple rattles, black and white images, a mirror and Aunt Jen making funny noises and faces.  She was hungry and yet smiling at me.  And she has that huge toothless baby grin that makes you want to have her smile always.  Anne and I painted her toenails (the first time with glitter), worked on spelling our names with stickers, made a princess with stickers and my poor drawing skills, played 2 different games several times and read.  She is learning to enjoy Shel Silverstein (carefully edited 'cause some might not be great for her) and she curled up for a long series of those while I gave the baby a bottle.  Sometimes it is still hard for her to share Aunt Jen and we sat under the kitchen table and talked about that too.

It was a good day and I am worn out.  Hopefully the weekend will go ok as my body adjusts to pulling the topamax.  I just don't feel good about taking any more of it.

I can't believe I'm saying that.  I had really begun to believe that i had found something that could bridge the gap between now and new anti-psychotics.  Guess not.