Secrets

My infant niece had her MRI today.  There were 5 possible diagnoses going in to this, all of them serious.  The most likely was extremely rare and had numerous complications and a potential for cancerous growth.  In some ways I was hoping for a mild form of spina bifida (it was the 2nd most serious type of 3 but the location would have made it minor).  The final 2 options were unspeakably awful.

It is the first one.  I am not going to follow my usual policy of openness here because it is so rare that I'd get a hit from my family.  It's one of those things that surgeons see a few times in a career.  But, and this is a huge but, hers is relatively small and is not tangled with her spinal cord.  It still must come out and there's still a small chance of malignancy (they seem to think it's fine after the MRI) and she'll have mild ongoing health issues for the rest of her life but not of the sort we were afraid of initially.

The surgeons offered to do the procedure tomorrow but after talking to them further they decided to go home, rest, let her recover from the anesthesia today and surgery will happen soon.  They probably know more details but a text message only says so much and they had a long, hard, emotional day after being up with a hungry and crying baby most of the night.  (She wasn't allowed to eat for 5 hours before getting to the hospital).  This also lets them be the ones to explain to Anne what is happening to her baby and that's good.  Anne also could use  a little contact with Mama and Daddy.  Everything happening so fast after the baby was born has been a little overwhelming for everyone and especially her, and the baby's surgery will be even more difficult.  I hope she's back here so we can take care of her again.  With 2 of us we do pretty well even if she is difficult which she really hasn't been this time.  (Just pre-schooler independence stuff combined with stress).

So pretty much, new baby, scary but seeming to be on the right end of the good-bad scale tumor, too much stress and Aunt Jen can't sleep.  Dr. Brain said she'd get back to me about meds for anxiety and I think she forgot.  I am afraid to just take something because I don't wnat to be knocked out tomorrow.

I am just so thankful that none of the really bad complications is there.  This is something that usually progresses in the fetus and by birth is really bad so she has been very fortunate to have a small enough tumor that it wasn't even picked up on ultrasound.

Ongoing prayers are still appreciated,

Jen

Rough

I thought I had learned how hard life can be in the last 2 years.  I was wrong.  Waiting to see if a newborn you love, part of a family you love who are all hurting, that is the hardest thing.

For a while today we thought she was having an MRI and then surgery tomorrow.  Now it is just an MRI and 8 hours of observation after anesthesia.  Presumably a surgeon will talk to them at that point and we'll know more about what is happening.  It probably is surgery and probably soon but that's assuming the most likely diagnosis is true.

It's hard to wait and it's hard to be patient when people want to believe that the doctor simply neglected to mention "it's all ok and nothing else happens".  I don't think that's very likely, both from reading a lot of radiology reports and because I'm reading over and over that an ultrasound cleared the child.  I haven't yet seen a case sent for an MRI that there wasn't something.  Plus the dr. never mentioned "it's all fine" when my sister asked for a list of best and worst possibilities.  I find it hard to believe that they wouldn't if it were possible.

So we wait.  This is so hard and being tough for Anne is also tough.

Prayers for strength for everyone are appreciated.

Geraldine

If you pray please do for Geraldine.  I'm too tired and emotionally drained to get into this right now but Geraldine has one of 5 conditions, all of which are serious and the best of which means she'll have surgery soon and has a higher risk of cancer from just the one most likely diagnosis than you ever, ever want someone you love who can't even hold her head up yet to face.  If it isn't that or way, way, way worse cancers she will have spina bifida.  Regardless she's not going to have a completely normal life unless the MRI shows that all this is nothing and that's not likely at all.  And that kills me because I didn't get to have a normal life and all I wanted for my nieces was for them to get a shot at that and here already she has health issues that mean she's going to have some problems and she's not even 2 weeks old.

On the plus side I can say that she is lovely.  She has very delicate features and is very small boned.  Anne always has been sturdy but Geraldine is not.  Her features are delicate and sweet and she has absolutely enormous blue, blue, blue eyes.  My mom says that my eyes were that color and for a time they were nearly purple.  She doesn't fuss much and if you hold her she snuggles in to you.

Anne doesn't know what is wrong (neither do we, we just know what is suspected and what has to be ruled out) but she knows that there were crying parents today and that something about the baby has them worried.  We were there today and were able to distract her while her parents went to my sister's follow-up appointment and she was doing better, as were they after they took a little time to drive around and cry and talk.

It's just so hard to fathom that a 10 day old baby has something seriously wrong that needs to be removed ASAP and that if it is what they think it is it is extremely rare, 1:40.000 births. 

I'll explain more when I can but that may be a while.  If this moves as fast as it sounds like we will just about be able to get our heads in line with it before it all takes off.

It feels like the whole world has changed today.  They started building my new home and I don't even care.

My favorite little niece

I have always greeted my older niece with "It's my favorite niece!". She likes the routine and expects I'll say that. Over the past 6 months I've switched to "My favorite big niece!". She is now requesting that I say "My favorite BIG SISTER niece". And so I will. She is indeed a big sister now. Geraldine was born Monday morning. My sister had a rough C-section with poor pain management and she looks like she lost a lot of blood. She's very weak and still in a great deal of pain. But she's home and that has to help, although as of last night she couldn't get to her bed and the sofa bed wasn't comfortable so she spent a night in a rocking chair. I think she spent the hospital nights in one also so she has to be sore from that. I'm hoping my brother-in-law maybe got her upstairs to just stay there for a while so she can be in a real bed. Geraldine is so tiny. She weighed 8 lbs plus but it's hard to believe that when you hold her. I think it is because she has very delicate features. I didn't think she looked a thing like Anne until her aunt on the other side of the family posted side by side pictures and then they seem identical. But mostly I think she looks like Geraldine. I got to hold her for about an hour Tuesday while my BIL went home for a bit. We had a little scare then; I was holding her and rocking back and forth and a bunch of green mucus came out her nose. I gave her to my sister and got a wipe and cleaned her up, but she didn't get her breath back quickly and so my sister sent me for a nurse. After a good bit of suctioning she was fine. Apparently babies born by C-section don't have all the fluids squeezed out of them like babies who go through the birth canal and they can all come out at once like that. It truly was a bit horrifying. Medical stuff rarely gets to me but that much stuff in that color seemed like a bad thing. She seems like a very sweet little thing; she just sleeps and makes like squeaking noises and fusses a little if she wants to try to nurse. However things can change drastically with that. I was a sleepy baby for 3 days before I screamed for 8 solid months and never slept well again. Anne is adorable. She is so very excited and has suddenly begun to love to play with dolls. When I was leaving she was washing all her babies' faces and hands to get them ready for bed. She's a very loving little mommy. Not that it's been easy; she's had some tantrums and frustrations and more will come as the newness wears off. But she's a sweet kid and I know that she'll be fine. So all is well with my family. More later about the other things; I just thought Geraldine should get one post all of her own since Anne's had so many. Copyright 2006 www.masterofirony.blogspot.com

It's today

In a matter of hours I will have 2 nieces, Anne and Geraldine. (Both totally made up names). I'm excited but it is so odd to think that I'll never just have one niece again and that my relationship with her will undoubtedly change. I also am feeling some of the "never gonna happen" sadness. But right now is so stressful that it's very hard to know what feeling is related to that and what is related to my messed up home sale and what is the loss of the home. I'm just so tired of things being difficult. I scheduled a neurology appointment today. Unfortunately to get into the doctor who specializes in menopausal migraines I have to wait 3 months. I'm on a waiting list and hopefully that moved things up. I'm pretty sure I can get in sooner if I keep having migraines so frequently and I beg. I have done this with gynecology successfully but back then I was losing large amounts of blood. However I think that being in pain all the time probably also counts; they are pretty good with that. However I might not see this doctor and I really feel that she offers my best hope in terms of understanding the issues going on here plus my medication plus my bad reactions to hormones. Tomorrow everything will be different. Copyright 2006 www.masterofirony.blogspot.com

One thing has hope

Many of the difficulties in my life remain unchanged and will until Monday. But I did get some good news today. I woke with a migraine and had to drive up to see Dr. Brain, about 2.5 hours. I did what I could with meds but it was hurting pretty badly when I got there. I had just enough time to run to a pharmacy. I'm not allowed ibuproferon because it raises my lithium levels but I had decided to take some and skip lithium tonight. I found a new migraine product that has low dose ibuproferon and potassium. I have to be careful with electrolytes but more because I'm at risk for having low values, not high ones. Dr. Brain thinks (we'll know after I take lithium) that I can probably occasionally take this stuff without too much trouble. And the best thing is that that it did help a bit. I thought when I got there that I'd have to spend the night up there and come home tomorrow because I couldn't see to drive. Instead my vision cleared up and the pain improved and since that was a half-dose (which is what I can safely take without skipping lithium) that means that I at least have something I can take if I'm away from home when the pain hits or when I don't think it's going to be a bad migraine. She also found neurologists that she likes to work with and one specializes in chronic headaches and women's issues. That's perfect because there are 2 easy answers to my migraines: stop the MAOI (not possible, no other antidepressants work) and start hormone replacement since the migraines and increased hot flashes seem to consistently match. Hormones have been ruled out because I'm far too sensitive and could wind up in bad shape rapidly. If nothing else works and I'm having pain we'll discuss further but it's the last option. So we need someone who isn't going to latch onto one of these. Dr. Brain seems to think my best hope is Botox. I'd forgotten that even works for migraines, much less that I could actually use that without any risks of messing with other meds. So I'll call the appointment line and in several months probably I'll get these stupid headaches checked out. So there is hope for the headaches. I'm fairly sure that along with hormones this is caused by trying to hold everything together during a really rough time. I am not comfortable crying here or showing signs that I'm feeling depressed. Which means that I'm not letting a lot of stuff out. I think it comes out in migraines. But regardless, I'm slightly less untreatable. Copyright 2006 www.masterofirony.blogspot.com

How much stress can I aquire in 2 days?

OK, brief recap: -Monday I was told that closing would probably be Thursday or Friday. That left me closing then, Saturday Dr. Brain (and 5.5 hours of driving), Monday Dr. Mind (and I predicted the baby would come then weeks ago because of my signing being that day but the C-section is scheduled for the 23rd). -I had to request Friday after tripping while putting gas in my car and banging up my knee so that I couldn't finish emptying the house Monday. -Wednesday I found out that there were remaining title issues but not what. Closing would not be Friday, hopefully Monday, the original date. -Thursday I meet with the title people, including their attorney (my attorney). There are significant issues that were not handled properly regarding the mortgages held by the people I bought the house from. They have no idea where one mortgage came from at all, the prior owners won't return calls, the old title co. went under and they are having trouble getting the old files checked for this information. I may have to go to court. Today I didn't hear anything about title progress. I did find out that the buyer is probably invested enough financially to not walk away immediately and the title people are going as fast as possible. Signing could happen next week. It all depends on the people with the old file and finding that one lender. Otherwise I guess we file legal papers to get those things from the old records and the old owners if needed. It just sucks to have to wait. I had no way of knowing this was an issue 10 years ago. I sure wish I had. I was better at fighting back then. My mom and I accidentally at least found the government program where the mystery 3rd mortgage came from; the names are reversed in my paperwork. Hopefully that helps. My sister's C-section was moved up to Monday morning so I predicted the birthday but my closing won't happen. We aren't sure how we're handling puppy care. I woke up and just didn't feel up to facing the world yet. I went back to bed and my mom came upstairs for the first time in weeks and made noise until I got up. So much for being allowed to be depressed. She's trying, she really is, but she is comparing all the losses I've faced in the past few years (job, identity, house, fertility followed by a week with 2 babies being born (my niece and my cousin's daughter will be 5 days apart), and I'm probably forgetting some. Grieving is hard. IT's harder when you can't just do what you need to. I got my mail and was approved for disability Medicaid. That sounds good after being uninsured for so long but it's not. This only kicks in after I spend more then 2/3 of my income on medical bills in any given month. Since there is no way I will ever do that because I CAN'T (I like to eat and pay for my car and the like) I don't know what good this actually does. I'd default on the medical bill before I could risk that. But I'm terrified because I'm afraid they'll tell me that I no longer get charity care from Dr. Brain's hospital and I cannot go 6 months without psychiatric visits, nor can I pay for them. Without a negotiated rate each one of those is around $450. There is also a higher risk of hospitalization as I have to go through the grief process again, and my family doctor really wants me to see a neurologist about the migraines. (8 days without one! Longest time since June. I think menopause is advancing; I have a LOT more hot flashes now and I think that's the migraine cause) but the hope is that a neurologist working with Dr. Brain may come up with something that I can take to actually help them. I probably also need an MRI or CT; that's only a guess. The gyn may need to be involved; this may force the hand on trying low dose hormones although nobody wants to. So back to the Medicaid, I called my caseworker at Cleveland Clinic and left a message about whether I would be ineligible for assistance but she didn't answer. All this time I"ve avoided applying for this because my prior caseworkers agreed that it doesn't make sense that I could give up that much of my income just to have Medicaid pay for anything beyond say 1 day in the hospital. So I think charity care is probably still there for me, but I need to KNOW something, anything. I feel like my life has gotten dumped into one of those rock tumblers the last few days. The ones for kids that require days of patient waiting to get a smooth-ish rock. Copyright 2006 www.masterofirony.blogspot.com

Ups...and DOWNS

I knew today would be hard. It was empty out the last of my house and say goodbye to it time. And it was hard. Seeing a sold sign hurt. Realizing the lock box was gone along with my front door key and I was effectively locked out of my own house was hard. And the leaving just sucked. Funny enough that wasn't close to the hardest part of today. We were hoping to sign today. Monday ends the contract so we need to sign or extend then and everything has gone smoothly, nothing was left but those signatures. Until the title company discovered that there is a major, potentially huge problem with the paperwork from when I bought the house and something very weird that happened with another title company back then which either neglected something huge or potentially did something illegal prior to going under later. There is a chance it will take legal action to get things cleared up, depending on what an attorney for the closed company decided today (we don't know yet) after they finally forced them to dig the old file out. Since the company had to have done something wrong in a big way 10 years ago I don't know if they'll share the file no matter what threats are made and how clear it is that a judge will force them to do so given my right to sell the house I've owned and paid on for 10 years. However if it comes down to taking legal action the buyer can walk away because of the contract time. If he does my life becomes much more complicated. I don't have a lot of facts. Tomorrow I'll call and talk to the actual attorney again instead of my title person because she just acts nervous and says she can't answer the hard questions. I need answers to those, even negative ones, because I need to know what is happening with my life. And I just remembered that we left a box leaning against the garage. Oops. Copyright 2006 www.masterofirony.blogspot.com

The first time

My niece is just a few weeks past 3 years old. She's due to be a big sister in a week (although my sister is having some contractions now so maybe sooner) and she's anxious. Her mommy hasn't been able to do as much as usual for a while because the baby is big, breech and my sister is very uncomfortable and has contractions when she does anything. She knows mommy will be in the hospital for a few days. It's all very stressful. Along with that is the simple fact that in many ways we avoided any two year old issues at all. Anne is cognitively quite far ahead for her age and socially she's a bit behind. She interacts very well with adults and so we didn't have tantrums at the usual age because she could tell us what she wanted. Well, now she has tantrums and they can be nasty, with hitting, scratching, throwing things and biting. Usually they happen because she refuses to nap and things are compounded by some bowel issues related to control. Enough days of constipation make her pretty touchy. A month or so ago she had one of her no-nap, worn out couple days and during the course of 2 days she bit me, called me names, and said she didn't like me and I was to go away. My sister did not make her apologize for the behaviors and in fact told me not to correct them because she was tired. That last one was because she was angry that I told her I put too much milk in her glass and I took a sip to keep it from being too full. It happened just before I saw Dr. Mind and I told him about it. He told me that I need to stop this. My sister has to treat me better in front of my nieces and I have the right to control what happens to my body. I am not required to let my sister be mean to me, particularly in front of the girls. I thought a lot and when I got home that day I sat down with her and talked about how she hurt my feelings and there are better ways to say "Aunt Jen I am VERY mad at you right now". This actually worked pretty well and there have been a lot fewer behaviors directed at me. Today however we took her to do something and she was overtired from not napping and she wasn't listening well and when I said something to her she tried to bite me. I had on a sweatshirt (in Ohio! In AUGUST!) and so she didn't make it but she followed it with a grin. When I tried to tell her know she tried to scratch me. And then it happened... For the first time in my life I told someone that they were not allowed to hurt me. I took control of my body for the first time in 37 years. I don't know how to explain how big this feels and also how silly it is that it took a 3 year old for me to learn this but the thing is that I finally did it. She'll try to bite me again but I don't have to let her and I don't have to be quiet. It was the weirdest thing to realize this. Maybe I'm finally learning what the videos they always showed in school about what to do if someone tries to hurt you were saying. Copyright 2006 www.masterofirony.blogspot.com

Bad week since it's only Monday

I've been hanging on to knowing that my house would close on the 19th. I was told that it might be a few days later because of the loan type the buyer has but it was unlikely to be sooner. I counted on that. I clung to that. And with the same amazing ease that this entire sale has been enveloped in it looks like we're closing early. I was going to the house today after I saw Dr. Mind so I could mow if I had to and then call my mom to help me gather the last things. I barely was ok with that plan but knew it would get the good-bye over with and then I could be sad for a while. Instead I tripped over the gasoline hose and fell and bruised my knee pretty badly so I decided to wait until Thursday (we have my niece the next 2 days) to get stuff and then probably sign Friday. I'm struggling with this. I know all the positives. I know this will all work out. I know, I know. But it is a huge thing to lose and apparently I have been wrong in thinking that all the months I've spent being sad about this counted as the grief I needed to feel. It turns out that grieving just starts again and I can't imagine that while I'm living where it is nearly impossible for me to cry because the only privacy I have is my mom sleeping and I'm always afraid she'll wake up, hear me and either try to make it better (she did this this morning and nothing is going to make this not hurt) or just not get it. I think a lot of it is just like my poor knee. If you just look at it you can see a bruise. It's not that big or that deep. However when I climbed into bed and first bent it and then kneeled on it I learned that first appearances are in fact deceiving and that if you look in good light you see that it's a big, deep bruise from above my kneecap to well below it and it is swollen which seems to be hiding some of the bruising. On the very good side I'm on day 4 or 5 without a migraine. Thanks to a colossal mix-up I'm not on Topamax for the moment; I'll resume it next week. Dr. Body finally said he wants me to see a neurologist who can work with Dr. Brain; he didn't realize I can see any dr. at Cleveland Clinic so hopefully when I see her this week she'll be able to get that set up. I don't think it really matters in that there aren't any meds but perhaps there will be something completely off the wall that helps. And having a neuro exam probably isn't the worst thing; my mom has been worried because she's seen a droopy eyelid sometimes since the last, really bad, migraine. I think it's from rubbing my itchy eyes but she will feel better when someone looks in there. This is the longest spell I've had without a migraine in 5 weeks. Hopefully my hormones are settling down. So it's going to be a rather hard week here. I just can't believe this week is here. It's a good thing but it's also so odd to think that after 10 years that isn't my home. I know this sounds ridiculous but it's hard to believe that I'm not going to be moving back in. Mostly I'm tired of maintaining a house I don't live in but it still is where I think of when I think home.....which makes sense while "home" is one bedroom crammed with stuff and shared with 2 cats. Copyright 2006 www.masterofirony.blogspot.com

So glad for the internet

I just sent in my order for a plethora of things I need for my home. It's amazing what I need to buy because either I didn't have it or it was completely worn out. But I had a 30% off at Kohls, plus it was a Kohl's cash period so the discount and the money back made a big difference. Still I am not used to spending large amounts of money all at once, I hate shopping, and making decisions about things that should last me for many years is so stressful. We looked at a store yesterday so today was remarkably easier; I just had to narrow down choices and then place the order. I made a dumb mistake with the order in that I could have done it through another website where I earn points towards gift cards but I forgot and didn't. Oh well. I was so focused on getting the order actually done that I forgot about the ability to earn those points. It's only about $9, yet it is $9 I didn't get the easy way. Oh well. I'm just glad that all those decisions could be made from home. I have to go up to my old house to mow for the very last time tonight and I'm already tired so I'm also glad it is done and I only have a thousand more choices to make. Copyright 2006 www.masterofirony.blogspot.com

Dear Healthcare Professional,

I'm the kind of patient whose chart unsettles you. I have multiple psychiatric diagnoses and a few physical diagnoses, one of which is rare. I have more than the average number of medication allergies. In fact I have so many that you probably are tempted to not believe me or to consider it a symptom of my mental illness. I take many medications each day. Some of my medications have side effects and interactions you may not know about that make the usual first, second, and even third line of treatments not possible for me. I require fairly frequent labs to monitor the effects of meds as well as the levels of some of the meds. I'm 37 and I'm disabled and unable to work. I seem like a train wreck and you are probably afraid that dealing with me will take up a great deal of your day. You know how I know? I was you not so long ago. I was looking in that chart and trying to decide how long it would take to go through the basics and how much time it would take me to relate past medical history to current situation and all of that to why I was going to treat my patient and how. I was cognizant that if I could just keep those evaluations at an hour I would have a much greater chance of finishing my day in less than 10 hours. I tried to be aware of this automatic judgment because I knew it happens to me but it's hard to not do this when time forces you to see your patient both as your patient but also as one part of your schedule. The mistake that you make is when you show me what you feel based on reading only some small part of my chart. If you feel incredulous that I am saying that the doctor has told me that migraines that are severe enough may require a shot of morphine you might want to check into why I am saying that beforeyou call to avoid answering my question about when a migraine has reached that point. Or you could just ask why I think that is the next step. I actually know the answer. I'm mentally ill but I still know my own situation. In fact I am frequently reminded of how much less than ideal the situation is. See, I can't take migraine drugs. Did you know that when you called me? No, you did not. I am gradually introducing Topamax but it's a very slow process, for reasons that the doctor and I have agreed upon. Did you know that? No, you asked some vague question about did I want more Topamax but that was all you knew about it. Did you know that I only can take Tylenol, vicodin or morphine for pain? No, you did not. And if you had those few little facts in your hand you might not have made me cry. The other mistake you made was assuming that I wouldn't notice if you did not answer my question. How could you? You didn't bother to see me as more than a diagnosis list and a medication list. All I needed was to know how long a severe migraine should be treated at home before pursuing the 2 plus hour drive to the only ER where I have patient assistance for a shot of morphine. I understand that to you that sounds extreme. But if you listened to me or read my chart it wouldn't seem so extreme, especially if you knew that I have had 2 days of migraines in a row and the one yesterday kept me awake all night with severe pain despite 4 doses of vicodin before it stopped. Instead all you would say was "If you think it hurts THAT BADLY (read between this lines, lady: migraines do not hurt THAT BADLY) then you should go". You refused to help me and I know it was because in your mind I was drug-seeking or being over-dramatic. Let's talk about making me cry. You knew you did. Yet you refused to ask why or if I was ok. I think from some defensive comment that you made as you continued to talk down to me, as you did through the entire phone call, that you decided that you knew all about me and that you knew that nobody would ever let me get away with my delusions but you'd just humor me and get off the phone. There's some world-class empathy. Do you want to know the end result of our little talk? I won't be going to the ER unless I am in so much pain someone else decides for me. You reminded me of how people treat me who don't want to be bothered to take 5 minutes to understand my history, people who merely see me as "that bipolar woman in room 7" and then refuse to listen to anything to might make the migraine the focus of my visit. Finally, don't call me "hon". I'm 37, not a child and if you are who I think you are I'm older than you are by about 15 years. I don't like being talked down to, especially by someone who is repeating herself and not listening to me but treating me like a toddler who needs soothed after not napping. You have no way of knowing whether some day it will be you with the mental illness and another healthcare professional refusing to have a conversation for 3 minutes with you. If it is, I hope you remember me the way I remember the times I was too focused on what I was doing rather than who I was doing it with. Sincerely, Jen PS. Any patient with a severe headache should be screened for signs of a stroke....Just because I'm mentally ill doesn't preclude that and since my brother had one as an infant it's better to be careful just in case. I do believe you did a rotten job and I turned around and told the dr. in an email that you were fine I was just frustrated by the situation. I was wrong. Good thing I like him. Copyright 2006 www.masterofirony.blogspot.com

Mark it with an X

Today marked 2 years since I worked. Last year I had a really rough time on this day. This time was easier. I guess I'm more used to this reality and I really had a fairly busy day, mostly because I had a migraine that knocked me out for a while and then I still had to go to the storage unit, pull green beans and then pull the beans off the plants. Those things kept me well-occupied. I did do something I've been putting off for a long time: I hid my facebook friends who I knew through work. I didn't have anything in common with them anymore and it just made me sad to see them talking about things I can't be part of. I'll miss them. Facebook is going to be pretty boring now. But it was time to let go and since I had the courage to do this today it was time. Tomorrow I'm taking Anne to the fair. I have to do her quiet time/nap, so please pray for me. This is often tantrum time rather than quiet time. I'm hoping the incentive of a treat will help. I want to get there by 3 because she gets in free. This fair stupidly doesn't charge by the age so unless you get in by 3 tomorrow you have to pay an adult's fare for a 3 year old. I'll do it because it will be fun and gives her a treat and her mom some time to hopefully relax with her feet up but it's ridiculous. I'm hoping to fall asleep nice and early tonight. My migraine seems to have responded to meds the first time (perhaps Topamax is doing something???????) and I am kind of tired so maybe. It'd be really good since I need to get up and give the puppy time out of his crate before I go since he'll be in there a pretty long time tomorrow. Copyright 2006 www.masterofirony.blogspot.com

It's August

this month is a big one. My new niece will be born and I'll sign the papers to seal the sale of my house. In theory those will be the same week. I'm not sure that the baby will not come sooner though and the house may be a little delayed. My niece is following the footsteps of her big sister and is breech. When my older niece was born there was a very difficult period when an external version was attempted and she went into distress, resulting in several days of hospitalization during which time they kept finding potentially scary things on the ultrasounds. By the time she was born we'd all been prepared for her to need NICU care at birth. Instead she was fine although she did have to have an MRI to rule out spina bifida and she had scans of her hips because of the particular breech position she was in. This time my sister tried some chiropractic techniques but is going to have a C-section when those didn't work. The problem is that she is carrying a large breech baby and is very, very uncomfortable and having frequent contractions while caring for a needy pre-schooler. The best thing would be for her to go into labor now so the baby would be delivered but without pressure on her cervix it's not likely. So I'll be going down at least once, probably twice next week to take care of my niece and hopefully let my sister rest. Resting is hard for her because she has work and graduate school things to do and she can't get comfortable so I think she chooses to work to distract herself except that doesn't help her handle the physical things that she has to manage. It's tough. The baby is due on the 23rd. I don't know when they'll schedule the C-section. My house sale has had a Thank God moment. I had a call from my title company that when I bought the house 10 years ago somehow the prior owner's mortgage wasn't recorded as paid off. The title company I used back then has gone under. They asked if I might have the closing papers and if there would be something in there that showed the mortgage was paid. By the grace of God I had kept the papers from my closing out. My realtor had asked me something that I'd needed to look up in there and I decided not to pack it. Otherwise we would have been forced to move all my furniture out of my storage unit then sort through to find potential boxes, open each potential box, sort for the folder, re-seal and repeat until it was found and then repack all the boxes in stacks and then put all the furniture back in the unit. So that will go out in the mail tomorrow and all will be well and it shouldn't delay anything but the potential is still there. Everything else is done, done, done and I should get an appraisal value soon. I should sign on the 19th. It's weird to dread a day in a week that will be happy. It's also weird to start making plans for all the things that still need to be brought home from the house. I'm starting to adjust to the Topamax. Dr. Body and I have emailed a bunch of times and decided that I will not increase until it really isn't causing sleepiness or fatigue. A little is ok but "I do nothing and am exhausted" isn't. Because I'm on such huge doses of other meds I am not going to try to do take a morning dose; there is just no way that I can take another dose of sedative 12 hours after the last and function at all. If it doesn't work we'll re-think, but for now that's the plan. I am on Neurontin only because we knew from a bad past experience that it is sedating and I needed sedating. So when I see Dr. Brain next I'll ask about getting off it and using the Topamax instead. In terms of mood stabilization both are weak mood stabilizers and really one weak mood stabilizer is probably as good as another, especially since we know that I need very high doses of really good mood stabilizers and so it's unlikely either will provide that benefit aside from helping me sleep. It's hard to think that it may take 4 months to reach a target dose of 100 mg but I've managed a lot of migraines without anything to help prevent them and from what I've read prevention starts at 50 mg. Any improvement is better than nothing and without Topamax I have exactly that so I'm not losing anything. And now I have to do my pillbox. There are few routine chores I hate as much as I hate pillbox night. I don't know why but I just hate it. I remember having a psychiatric patient once who was bipolar and had done well on her meds for many years but had gone off them during a hospitalization for lithium toxicity and while confused from that fell and broke her arm badly. She had occasional periods of confusion after being stabilized on a different med but was doing well enough to go home, something that almost never happened from that building. I was afraid she'd forget her meds sometimes so I set up a pill box with a piece of candy every day and sent home the candy for her to keep putting in every day for a couple of months. I don't need candy to TAKE pills, I just need it to fill the box. But since I'm not allowed chocolate right now it would be an empty treat anyway. Copyright 2006 www.masterofirony.blogspot.com

Walking Dead

Years ago I was transferred from one nursing home to a group of 3 others. It was done rapidly and nobody told me much about where I was going. The first day someone walked me around quickly and then suggested I see my first patient on the first hall. I went there and found a man laying on the floor. As I approached he informed me very sadly "I'm dead". I asked a staff member if he was ok and they told me he always lay on the floor. Moments later a naked man emerged from another room. That was how I learned I was working in a psychiatric facility. The man who believed he was dead eventually became one of my favorite patients. He was a truly sweet man who remembered a great deal of information about my life. He just thought he was dead. One of the funnier yet saddest things I've ever seen was once a funeral home came to get a body and they pushed their gurney past him and he told them he was dead as he laid outside the room of the dead man. They were a bit confused. He had a very, very rare condition called Walking Corpse Syndrome. It is believed to happen to only a few hundred people in the world at any time. One man with the condition had a PET scan showing that he was walking around with a brain functioning as if it were in a coma. I don't think my patient had any diagnosis and he definitely didn't have treatment. Some people got really frustrated with him but he couldn't help it. This new medication addition, topomax, is making me feel like I may develop a similar condition. With all my other sedating meds I am still not getting to sleep early but once I do I am out of it. Last night I (and I can't believe I'm admitting this) wet the bed a bit because I was sleeping so soundly. It happens; with diabetes insipidus I drink so much and my body puts out so much urine that my bladder gets very full and accidents happen every so often but this one I'm pretty sure was sedation. For those who know these things I'm on 900 mg of Seroquel XR (I think that's equal to 1200 mg of regular Seroquel but can't find the conversion in what I'm allowed to read which is not drug profiles); 400 mg Neurontin; 2 mg klonopin; 625 mg lithium (only a little sedating but it all counts right now); and the 25 mg of topomax. I will get used to the topomax and eventually I'll get used to the amount I need to control my migraines but for the moment this is a crazy amount of sedation (despite the fact I'm writing this at 2 AM). Once it kicks in though it REALLY works. I'm not complaining, if it helps that's wonderful, but wow. I'm truly not sure I could raise my right hand on command for a while this morning. Oh well. Copyright 2006 www.masterofirony.blogspot.com