A little lunch reading

I sat down to peruse the internet while eating lunch today and this article caught  my eye:

http://www.examiner.com/article/multiple-sclerosis-death-due-to-tecfidera-unlikely-but-still-investigated

My favorite  paragraph was this:


The introduction of the drug has exceeded expectations though and, coupled with therapies like Gilenya, these pill-form medications are changing the way patients are dealing with their disease. i.e. They are DYING!

OK. I added that last part. But it's still true. When I went to the neurologist last she listed all the new drugs coming out. But cautioned it is always a good idea to wait and see who dies first. And of what, as the market guinea pigs are more numerous than the trial rats and new information (side effects) really come out once a drug is FDA approved.

Not that I was thinking of trying it anyway. But its fun to keep up on the news.

Speaking of MS, I have been blogging in my head a lot lately and have been looking forward to sharing stories about walking into doorways and falling off exam beds, and cleverly and desperately peeing in a diaper only to find the '12 hrs of wetness protection' is a lie. (Also, some of those stories have a basis in reality and some do not. But I'll let you wonder a bit for now.) Because for real my hands are numb and typing with the fingers that are just mobile enough (popsicle sticks would work as well) is really slow so no longwinded diatribes about the state and fate of man or mice (especially ones in trials). For now. But it started with my legs and they are feeling some improvement so hopefully that means its on its way out and I will be a fully functional battle station in a few weeks. I'm bummed because I did want to participate in Jen's 7 for Seven idea. At least I have something new to read every day this week.

Summer What?

Well, our summer is off to a normal Seattle start. It's been rainy the past two days. I took a picture through the back door. I didn't want to step out, because its all wet. We put the down blanket back on our bed last night, after having it off for awhile. I suppose it had to start cooling off to get ready for 4th of July. Another Seattle  tradition. But at least we have cousins coming to visit for the week, starting today. Never mind we might all be cooped up the whole time.

Pregnancy, on the other hand, is still off to a good start. But  I don't usually start to feel yucky until about week 6, and then feel better by week 12. Though I am still planning on not feeling queasy at all. I have started  making notes on quick snacks to keep around. I didn't try this one last time but for breakfast I'm  going to try a banana, strawberry, blueberry, kale, and cashew butter smoothie. I can chop and freeze it all then just blend in the morning.

Lately in the evenings I've been having whole wheat crackers with triple crème brie and apples. I am going to try and keep that up as well. Just because I really like it.

I was a little worried the other night in bed, the best time to worry, about Malachi and how long I'll be able to exclusively nurse him. He's been really fussy in the evenings. even if he goes to bed early, he'll wake up just to fit in his fussy time, which is generally from 9-11pm. Though he is not adverse to starting it earlier, if he feels the need. Or going later. The other night he extended it until midnight. Which was really fun because it coincided with my snack time so I got to try and assemble my crackers with one had while standing and bouncing up and down.  But I am trying to be very conscious of my diet so we powered through it.

So of course I start to worry maybe he is hungry and not getting enough.  Or, God forbid, should lose a chin .

I've never been pregnant this early. Usually it was after a year and they were eating some table food. So it feels weird to be thinking about his diet already. After doing some research and talking to my mom, which are the same thing, I felt better about sticking to the course of holding off on loading up the conveyor belt with the fridge contents and sitting Malachi in front of it. Instead I've just focused on making sure I get lots of nutrients and water.

                                                      What, fat boys get hungry too!


I've also been checking blogs of anyone with a baby near Malachi's age hoping to find a similar story. Come on, my baby is X months younger than yours. Aren't you pregnant too? But so far, no. I still wonder why I am. Malachi still nurses a lot at night, in the mornings, and all day. He's never not with me, unless he's napping and I make a Costco run. Nothing is different from my other kids.  I've only recently started to thin about exercising. The best I can some up with is Malachi has some big things to do in life, and he's going to need a side-kick.  If this baby comes out wearing boots and a cape I'll take that as a confirmation.



Speaking of Malachi coming out, I just realized I still have not posted the story of his arrival. It feels hard to go back and read what I did write down. Because it was hard. And I might just post what I wrote without revising it. And maybe that will remind me to  clean up some of the blood that is still on the floor trim. Yes, I have cleaned the bathroom since, it was just an out of the way spot so it was overlooked. For 8 months. But then I think 'you'll just have to clean it all up again in 9 months, maybe you should wait? Besides, you need a snack.'


On an even better note, this study says breastfeeding is OK for mom's with MS. And goes back on an older study that showed no benefit to prolonging the protective period that pregnancy affords by saying it actually does. Not that I needed anything to convince me that nursing was best. Sadly, the article does not state strongly that women 'should' breastfeed, just that they can. But when you read the research it is pretty clear that moms that breastfeed  are better off. As a side note, I have never had the much warned about post partum relapse.

Well, wherever you are, hopefully a sunnier place, I hope your summer is off to a great start. We'll dream about sprinklers and sunburns and enjoy free rootbeer floats that our grocery store is offering as consolation prizes for the crummy weather. Where, I will probably pick up some more cheese and apples.

 

XRJQZ&&&%#! : o : )

No, this is not a guest post by Malachi. The first part was a tribute to my Scrabble letters. The last part was my reaction when I finally found a gift for Father's Day. Shane is notoriously hard to get things for. The things he does not get for himself are things I'm not really qualified (or funded enough) to get him. Like, a 60ft catamaran or something. So instead, I found the most unique, literally one -of-a-kind presents I could find. And then I woke him up early to show him the test results. Because I know he needs his sleep on the weekends. But I knew he'd want to know and it was way too early to call anyone. I was going to take a picture of the little digital 'pregnant' symbol. But it was gone the next day and when I tried to pee on the second one it came up with an error symbol. So I looked up the  symbol in the manual and it said the results mean you need to do another test. Which I didn't have. Who can screw up peeing on a stick? Oh. Someone with 5 kids one of which is sitting on her lap while she tried to do said test ( I know. Too much information). That's who. So no cutesy picture of a positive test.

I was surprised, and not surprised. On Monday I went into the clinic. I wanted to make sure the UTI from the week before was all cleared up. I had sort of a funny slightly full feeling and it made me want to check it out. So I left the baby at home and ran up to not pee at the drs.

I had purposefully drank a large glass of water before I left. But much to my dismay, and drs surprise, I couldn't go. So we chatted a bit and I explained how it didn't feet like a typical UTI, but jus funny enough as to feel like something was trying to get my attention. And sometimes that is how UTIs start for me. They always ask if I'm pregnant and I always tell them there's always a chance. Unless  I AM pregnant. Then I tell them yes. So he said they could check that too. He looked over my charts and saw that every time I had come in suspecting something was amiss I had been right so he wrote me a prescription for the Monurol  again and we discussed what I might talk to the urologist about next week. It was all very nice. And finally I had to pee. He came back in and said,

"You were right."

At least about the leukocyte level being high. He said he'd call me in the next few minutes when he got the hcg results back, if it was positive. I went to the pharmacy and waited. He never called.

But, being the 'I love tests that tell me about me' kind of person  that I am, of course I came home and started peeing on things. But the first positive was not until Sat, so that will be useful information for the midwives as my cycles had not been perfectly regular. All two of them. Also, for anyone interested, because I always am, the 'practice' or warm up ovulation thing  is totally true. I had two periods of suspected ovulation, complete with lh surges and everything- I told you I liked tests. But the last one was the real one. Also, lh looks suspiciously like hcg, so if you get a string of positive lh tests you are probably pregnant. It was a good thing I was testing so often so I could pinpoint approximate implantation and then and not just tell the midwives 'surprise me' when it comes to calculating my due date.



So I might have a short window of actually coming up with real words at Scrabble. Before the pregnant brain sets in. If it ever left. I'm still not sure it did. Thank goodness for spellcheck.  Real words. Not just silly arrangements of letters pulled out of a bag like I think the MS drug companies do. Why else would they call things like Tysabri, Copaxone, or Tecfidera unless they were just going for points. Not 'easy to say easy to spell. I laughed out loud when I read the newest Plegridy. Really? That's the best they could come up with? It doesn't even have a Z in it. Another fun part is keeping the names straight all through the trial and release-to market phases. Just when you get a handle on BG-12, they go and change it to Tecfidera. Ok so Tysabri is a little easier than it's  natalizumab (sounds like a space alien name). I think they laugh when they come up with their silly names. 'Hey, guys. I got a good one. Even the neurologists won't know how to say this one without the secret decoder ring! Oh, and tomorrow we're doing no vowels.'

Marc Stecker's post informed me about the newest candidate in the funny names line-up. Whether or not you are interested in funny named drugs, MS research, or zombies you should check it out. His blog is Wheelchairkamikaze. The link is to the right.

(Haha. Spell check is having a hayday with all the drug names.)

Let Them Eat Food

Malachi is teething. Hard. One tooth is through, but the second is clearly giving him a hard time. Which is a hard time for all of us. Eating, bathing, and conversing are things of the past. I told Shane we should just get some French comedies as subtitles would allow us to actually get the movie. Instead of trying to read lips and coming away with vastly different plot themes. Were we watching the same movie? He was confessing to the murder? I thought he was professing his undying love and affection.

Teething tablets, Tylenol, frozen chewy rings. None make  much of a difference. He's also started nursing like he's smoking a cigarette. He takes long, slow drags. Then lies there contemplatively, the cigarette dangling from the corner of his mouth, and looks around before taking another puff. The he feels the cigarette slipping so he employs his newly emerged snaggle tooth and catches it just in time. At which point I take a sharp breath. Which scares him. So he cries some more and I cry some more and I wonder how the detective knew the murderer was the wife.

So I laughed, yesterday, when the therapist advised me to work on getting some time for myself. To exercise, think, grocery shop- without the distraction of kids. Actually, I had already set aside some time on my calendar next week. At 4am. To pee. These days that's about as luxurious as it gets. She also advised me to focus on nutrition and making every calorie count. As in make sure every calorie comes from butter, heavy cream, bacon sandwiches, or triple cream brie with crackers and apples. Or at least that is what I took it to mean. Given the few opportunities and the speed, and positions, which go with trying to get food past a grabby Muffin and into my mouth, the fewer in number and more calorie-dense in composition of each bite the better chance I won't pass out before the next meal. At this point I don't know if my freaky metabolism could support me, a growing fat boy, and  some jumping jacks.

I surprised myself last night when Shane, who had already worked late and through some of Malachi's evening fussiness - it gets worse at night-asked if it would work to take the big kids to see the midnight showing of Man of Steel. And I said sure. By work, it ended up meaning that Cyprian would discover they were going and he was not as he was awake when they left.   Because my kids stay up way too late and a midnight showing is not really a big stretch for them. His sadness would not be assuaged by the opportunity to camp out in mom and dad's room and Malachi, who was almost starting to stop whining, felt inspired by the competition  and set up wailing with renewed vigor. I was starting to regret my support as Cyprian threatened to pack his bags and leave and Malachi bit me for the umpteenth time. Then Kateri took the baby and walked and the  change of scenery and pace helped him finally quiet down and I slipped him a cigarette and  he went to sleep. Just about the time the movie was starting.

And I  was so not ready when Malachi started repeating all of the bushman's lines from The Gods Must Be Crazy. At five in the morning. He finally went down for a nap. 45 min ago. He's up now. Probably he sensed I was about to make lunch.

I have 15 minutes before Malachi wakes up.

So this will be quick. Unfortunately, all day long he has only been taking 15 min naps. Spaced hours apart. Which for a growing boy who got up at a normal time, is not good. And when he is awake, he's not very content and is very opposed to mommy having a BLT, unless of course, I share. In other areas he stands for babies should always be held, moms should not eat, pee, do dishes with two hands. He is pro equal time with the laptop, and other annoying views that are not compatible with adults living a somewhat sane existence. He did finally pop a tooth earlier in the week so maybe he is working on another one. So far there have been no injuries due to said tooth. Which is surprising because he likes to play growly bear cub with everyone and gnaws on shoulders and faces with ferocity. And grab handfuls of hair every opportunity he gets. I think I will never wear my hair down again. But doing so would involve brushing it so it's not like that was ever going to happen anyway.

 

In the midst of all this, I was surprised with a revelation I had. I've been doing some research about women and the natural rhythms of life and made a discovery. PMS has been gotten a bad reputation, by what I think is just a misunderstanding. Normally a women's energies are focused on fertility, nourishing relationships, family and other cheerful female attributes. But once a month, her energies focus on the things beyond herself and with hawk-like precision, she is able to see and point out all that is wrong in the world. And then she uses her creativity and problem solving to instruct precisely how those wrongs are to be righted and who's job it is and when they should do it. With clarity of mind she is like a beacon, shining a spotlight on any and all areas where others need improvement. Rather than women separating themselves from polite society at this phase, they should realize their potential of the life coaches they are  and get recognized for the guidance they offer to others.

 

In other news, Malachi had his first food. Which actually turned out to not be food at all. Unless you are a cow. I wholly expected he would get his first food yesterday when I had an appointment and left him sleeping on the couch with Shane for a couple hours. I was hoping he would take a long one as he had gotten up really early. But his Napoleon napping schedule was starting and he woke up not long after I left. I figured I would come home to him eating steak. He was fine. And though he makes stealthy swipes at anything anyone is attempting to nourish themselves with, has so far been unsuccessful at getting any himself. Successful at knocking plates and food on the floor but not in his mouth. So today he decided to really go for it and worked his fat little fingers to edge of the blanket and plucked some grass. He was not as entertained by the flavor as he was at the process of getting it so I let him dig around and pull grass. Then had to wrestle him later to wash his hands and clean out all the dirt from his fingernails. Its going to be a fun summer.

We walked down to the new construction site where the kids like to play and he was not happy sitting in the stroller so I put his blanket on the dusty ground and he was super excited to scrunch his fingers in the rocky dirt.

It's actually a pretty cool area, complete with cattails and a little watery thing for doinking rocks into. The kids could play there all day walking the tire tracks, playing Mars rover, the Sandlot, or abandoned children. Actually, they are there right now. I brought Malachi home for a nap, figuring we'll be back in 15 min. Maybe I should have packed them some food. In case he naps longer and they get hungry. Its very dry and there are no signs of wildlife or edible vegetation. Otherwise, I'd trust Kateri to set up camp and rustle up some grub.

 

Speaking of Kateri, she just came back to tell me she got her first bee sting. Actually, she got two of them. She didn't even cry. One is on her cheek. So that will be interesting to watch. And Malachi is up. What's that I sense? something is wrong in the universe? I must be off then.

crazy week..

 

And it's not even over. We had a fun weekend with relatives staying over and a bridal shower for Shane's sister. It was very sad to have  the cousins  go. And their moms. Dads sat this one out.

 

I was very sad, when, that evening I started suspecting another UTI. Then I thought back to the shower, all the treats ( sugar) sangria ( alcohol and sugar and citrus, triple whammy) I was hoping it was just some irritation. But just in case, I started the herbals with lots of water to help treat it. The next day I felt better and was glad it was a false alarm.

 

 The next day when I went to see the neurologist, she offered to run a test and I said sure. She also said I was stable. She didn't offer a detailed list of the areas, so I am going to go with all of the above. I did discuss my frustration, in the event of an actual UTI, of not being able to get the drug I prefer and wouldn't it be better for me to just have some on hand for those situations. She was not keen on that, but gave me a referral to a urologist, so I might still have an in.

 

 

So imagine my surprise when the nurse called the next day evening, at 6:00, after I had called them to get results and was told they should be in on Friday- in three days!- to tell me I did have one. Then she told me the dr would call in a perscription for three days of high dose Bactrim. And I could pick it up the next day.

 

So I got off the phone and stewed for a bit. Then I called around until I found a pharmacy that had Monurol. It was after hours  when I called the answering service for my dr and told her I was nursing was did not want to take that one but wanted the Monurol. And I had already called a pharmacy and located a packet of it and gave her the number. The dr called back and said she would look it up when she got home and call it in. I was feeling ok so was not too panicked about waiting until the morning. But was keeping up the water and bitter herbs. And was feeling giantly irritated about the situation.

 

The next morning I called the pharmacy and was told the dr had not sent it in. So I called the dr. Then I had to take Pippin to the dentist to get a flap of gum removed because he kept chewing on it and it hurt. I was wondering why he had asked the other  day what would happen if you ate a piece of yourself. Or drank your own blood. Then when he said it hurt to chew I looked in and saw  some flesh flopped over his back molar. So this morning we  rushed down to get it taken care of. Actually our rushing was slowed down by a fire engine. Parked across my driveway. With no driver in it. I contemplated trying to squeeze around it, but knew I'd have to straddle the curb and after my last curb incident thought better and waited until they left. Which was not too much longer.

 

And then the nurse called back. While I am sitting in the waiting room trying to nurse a wiggly babe and remember the name of the pharmacy I wanted to use. I think I probably told her the wrong name. At least once. I had written down the number at home and finally called home to ask Cyril to look by the cupboard by the back door for the piece of paper. Like a 12 year old boy he looked. I told him it a  piece of blank paper. So he looked for an empty page. Then I said, no, it has a number written on it, but its just white paper. I don't see anything by the front door. No, not the front door, the back door. Ooh. THe back door. No I don't see anything there either.

 

So I kept trying to locate the number on my phone with one hand while still nursing a wiggly baby and occasionally patting Cyprian's leg while he lay still to get his gum flap clipped. He did very well. Kateri had come and was a huge help offering to take the baby and then deciding it would be better to just take him out to the waiting room to play and I tried to focus on remembering the names and numbers of what felt like the entire world. I wanted to get it called in so I could pick  it up on my way home. But after the final call back from the nurse, she told me the pharmacy had to order it and it would be in tomorrow. I will withhold my thoughts at that point.

 

 

Once I got home I found the paper. In my pocket. I had had the foresight to think I'd want it and should take it. But then, I forgot. I hope at least one person gets the reference to Mr Moon's oft repeated line. I called to make sure it was the pharmacy I thought it was. I was so confused with names and numbers at that point but really wanted some confirmation that I remembered correctly the phone call from the night before. The pharmacist answered and I pitifully explained that I was losing my mind and did he remember me calling before. Ever? When I told him the name of the drug he said it was being delivered and would be ready in an hour.  I said I would have the neuro send over the request. He said he already had it, that's how he knew it was me. Not sure what that meant. But I said ok, ate some lunch and bitter herbs, and ran to pick it up.

 

 Kateri, my trusty side-kick, came with me and the baby. He was  mostly happy, didn't poop. But he had already made up for that at the neurologist visit, where I didn't have Kateri to take him out when he was super stinky or help change him back at the car where I almost drove off and left the not-crusty-anymore-and-very-useful stroller in the parking lot.

 

He had pulled the very same trick when I went to the phone store to exchange my phone. Again. The first time it kept giving me silly sim card messages and shutting off. The new one came and seems to have some issue with the capacitors on the left side of the keyboard. So it shoves extra r's, t's, f's and sometimes an e into words. And makes it look like I have a speech impediment when I send Shane messages. So a new one is ordered and I hope everything will be resolved tomorrow.

 

I picked up some test strips at the pharmacy too. I am contemplating saving the drugs for a more dire time and just water and bitter herbing this one away.

 

 

 

Mostly pictures

I have a cold. Again. It seems like the last one, which I shared with Malachi, was just like yesterday. And then when I thought about it I realized, it was! I've been popping the Chinese herbal pills like crazy. When first line of defense pills didn't work and I could not find any of the second  my sister came over with some of hers and we swapped. So hoping things will start improving soon.

 

Malachi finally got  over his cold and I was thinking he might be getting this one due to his extreme fussiness. But I think it might just be more movement on the teething front. Either way he has been generally dissatisfied  with pretty much everything, mostly everyone, and most activities. In the evenings he's  only soothed by dancing with Papa. Which is super cute but not super helpful on nights like tonight when Shane has a dinner to go to.

 

I offered him some Tylenol and some teething tablets. Then I fed him some candied pecans. He was just starting to really enjoy them when I realized what I had done and fished them back out again. I was standing at the counter holding him on my hip and snacking on the nuts I had made the day before. I had just finished feeding him some teething  tablets like a birdie and absent mindedly popped some of the nuts in his open little mouth.  He was not too keen on giving them up but I got them out. And it appears he does not have a nut allergy. So that is good news.

 

He is definitely entering the difficult to do anything with as he throws his weight, which is not an insignificant amount, towards whatever object looks appealing. Like my coffee, the flowers on the counter, anything anyone is trying to put in their mouth. It makes for fun mealtimes.

 

He is also in the "I don't like strangers and if you are not in my immediate family you must be a stranger waaaahhhhh! stage.

 

The big kids finished up their classes last week and for Audrey's poetry class the students were going to take turns reading some of their work. So I got my phone on video and was all ready to video her performance. That was until Malachi noticed the girl standing next to me. She was wearing a hat. Strangers wear hats wahhhhh! I felt Malachi curl into me  and could see from his cheek outline he was freaking out. I bounced faster and whispered in his ear, trying to get him to look at my face. But he kept looking around and seeing lots of unfamiliar faces and oh no. It's hat-girl again waaahhh!

 

So I quickly stepped out  of the room and watched as the other kids took turns reciting. I knew Audrey would be last and was hoping I could get him calmed down enough for me to jump in at the end and at least get her. I sat on the hall floor and nursed him talking to him and soothing his ruffled fat rolls. He was finally his smiley self and we chatted and snuggled. Then it was Audrey's turn so we stepped back into the room. He was immediately agitated so Kateri grabbed him while I tried to hold the phone still. But the first poem ended and there was clapping and it was too much. So I got a few seconds of video and hopefully no emotional scarring. And when you come to visit, please, no hats.

 

 

He did get to enjoy some swing time last week when we had several days of beautiful weather. He liked it but the baby swing required some extra padding to hold him securely. The weather is horrid now. I turned on the heat for Malachi's bath. And I think the rain is supposed to continue for the next week. So not much swing time in the near future.

 

He wanted desperately to be outside with the big kids so I lugged the high chair out for him. He was quite content watching the kids play. This was before his teeth ( if it is his teeth) started bothering him.

 

 When his is not grabbing everything he can get his chubby hands on he likes to sit and write code.

 

And then sit and relax by the fire in his new fat pants.