Showing posts with label MS. Show all posts
Showing posts with label MS. Show all posts

Monday, June 16, 2014

Ride the Riverside 2014

Last weekend Yannos and a few of our friends participated in Ride the Riverside for the MS Society. The group on Saturday rode 100 miles and the group on Sunday rode 32 miles. Yannos was the only one crazy enough to ride both days.

The team raised an outstanding $7,307! That truly amazes me. Here are some pictures from the day. I'm unfortunately finding it much harder to take quality pictures with 2 kids. Something about needing my hands free...


It was a gorgeous weekend for chilling at the finish line! 



And climbing poles...



And passing out...



So that's what we were doing while these guys did all the work.

Here are the Saturday boys (minus one rider). 
Unfortunately there was an injury early in the ride that took Justin out of commission. The boys said they were riding for me, but really they were riding for Justin. 



Medals and sore backs!



The tribute to Justin!



Day 1: Max speed of 34mph? You guys obviously didn't see that speed limit sign Zoe was climbing. 



Day 2! 



Haven't seen Greg since our wedding, but MS rides bring people together. 



Looks too easy for Laura :)



Yannos and the skidoos



Hanging out in the tent.



Lexi had to bow out of the ride on Sunday due to asthma, but then we really lost her when the pick up van went the wrong way on the highway.

Yannos said he was worried when he first got back on the bike again on Sunday, but felt completely fine after a few miles.

Next up for team "With Friends Like These..."? Team jerseys.

If anyone knows anything about custom bike jerseys, you let me know.

Thank you to our team and thank you to everyone for all of the support!



Tuesday, May 27, 2014

MS update

Time for a MS update again!

Sometimes I get through a day and I'm so exhausted that the second I sit down, I fall asleep. I get angry about it. Really angry. Why can't I enjoy my evenings hanging out instead of passing out? Why can't I get through a normal day? Why can't I do more?

Then I remember the old days where I couldn't get out of bed because my leg didn't move. Or when I had to take a nap after washing my hair because my arm was so weak. Or had to spend the whole day with one eye closed because of my double vision.

At this moment in time my MS is managed to the point that I often forget my limitations. We used to be strict about only doing one activity a day. Then I could manage 2 activities on most days. Let me remind you that an activity could be as simple as taking a shower and getting dressed or as mundane as going to the grocery store. We're not talking about super fun hiking/outing/swimming/partying activities.

But as I reflect on my days now...

I can shower, drive Zoe to and from school, see a patient, take care of an infant, feed myself, go for a walk, and help with dinner. That's a lot more than one or two activities in a day. In fact, it looks almost "normal".

Except when I try to read more than 5 minutes, I fall asleep immediately or get double vision until I fall asleep.

Except when I get the stomach bug going around, and my muscles start twitching in spasms as my fever creeps up.

Except I still cannot fold a load of laundry or put away the dishes without needing to lie down afterward.

Except I can't hand write more than 5 thank-you notes before having to turn the whole task over to Yannos.

I'm mostly ignoring my current neuro symptoms. Probably not the best approach, but there is something strangely comforting about intervention not being a necessity. I've had weird patches of sensation loss on my right hip that popped up during pregnancy, but still haven't resolved almost 9 months later. I have the nearly constant feeling that there is a hair on my left hand that never exists. I've had some facial muscle weakness/fatigue that I notice while brushing my teeth, eating, or reading aloud to Zoe.

Nothing so substantial that I've felt the need to even visit my Neurologist, but also not normal.

Unless it is normal. I would say that is the curse of a chronic illness. At least for me. I constantly second guess myself. Maybe all people have these little things? Our bodies are complicated machines that misfire all the time, I'm sure everyone feels stuff like this.

But then, I do something like, oh...chop an onion...and pass out on the couch at 2 pm, because that is literally too hard for my body. Only then do I remember why I have the two activities a day rule. Why I have to just sit and rest the entire time my children are sleeping even if there are things I would rather be doing (almost anything). Why I can't do dinner or a night out that messes with MY bedtime without having a plan for rest and help the next day.

And those things aren't normal.

If I work for a couple of hours then I can't make dinner. If I take Zoe to the park then I can't hold Aleko if he needs me to rock him. If I read a book then I'll be too tired to stay awake and catch up with Yannos at the end of the day. It's a giant jigsaw puzzle. Sometimes the pieces are easy to fit together and sometimes I really struggle to find any that match. Sometimes I don't mind looking all day for one particular piece and sometimes I don't feel like doing a puzzle. It's complicated. And not in a Facebook relationship status way.




Yannos is once again participating in a Bike MS event with some of our friends. Except this year he's riding 130 miles. My goal this year is to ride ONE mile on a bike ;)

Here is the link to donate to the cause...

DONATE TO THE MS SOCIETY! 




Tuesday, December 4, 2012

This is a story

I will tell you now, if you don't care for stories about being a mom or think breastfeeding is weird, then you need to close your eyeballs and move along.

Nursing doesn't get more public than the doorway of a bank at the base of the Acropolis in Athens, Greece


This is a story...

If you asked me 2 years ago how long I was planning to breastfeed, I would have said, "probably not at all."

One obstetrician in my office had a very convincing argument for why I should not even attempt to nurse. You see, before I got pregnant I was on medications that are toxic to unborn children and dangerous to nursing babies. Yay drugs! We were prepared for a scenario where an early relapse after delivery would mean I needed to be back on those baby killing drugs ASAP. At 4 months pregnant, emotionally it was hard to give that possibility up, but logically it made sense.

Well, anyone who knows me is aware that the above scenario was not the case. In real life, my experience has been quite the opposite. I have been successfully, happily, and for the most part, healthily nursing Zoe for 18 months.

That's right 18 MONTHS. 

I have now gotten to the point that even nursing moms pause a while before asking, "Oh wait, how old is she?"

I have heard many people say they think a child is too old to nurse when they can ask for it. It's one of the most puzzling arguments I have ever heard and here is my reasoning.

At this age, Zoe actually asks to nurse by saying the word, "nurse."  It seems she meets the above criteria of being "too old". But, at 14 months she asked to nurse by signing "milk". At 10 months, she crawled into my lap. At 5 months, she cried. At 3 days, she rooted.

I took all of these behaviors as asking to nurse. They transitioned seamlessly into one another. Today wasn't that different from 10 days ago. 7 months ago wasn't that different from 8 months ago. The change from one day to the next is hardly noticeable, but now I have been nursing for 18 months, and we are worlds away from when she first latched at 5 minutes old.

These days, when her head is cradled in the crook of my arm, my outstretched fingers only reach the small of her back instead of her toes. She lies heavily across my lap instead of having to delicately hold her. She is simultaneously completely different and exactly the same.

I honestly don't remember the early days. And by days, I mean months. It probably sounds like we never struggled. Not because that was actually the case (we had thrush for 9 weeks), but because my mind just deleted it.

I used to only have 20 minutes in between feedings.
I used to cry at night about not being able to wean her off of using a nipple shield.
I used to eat carrots and string cheese at 3am because I was starving every time I fed her.

These are vague memories, veiled by fatigue and hormones.

Now, I plan on nursing as long as the situation is a positive experience for both of us. Currently, it is a symbiotic relationship. Mutually beneficial. I truly believe it has kept my MS symptoms in check, but the research is conflicting. In 2009 research said it helped. In 2011 research said it didn't.

I've had to seriously consider weaning on two occasions.

1.) At around 9 months when she was requiring an hour of rocking/bouncing after each night time feeding and crying for 2-3 feedings per night. I could feel the energy leaking from my body. Many sleep advice books made it sound like the only way to stop the night time feedings was weaning all together. The thought of weaning her was panicking me, so I obviously needed to find a different solution.

2.) At 16 months, I had an episode of severe fatigue and my functional status really declined this September. I was considering going back on some of those medications mentioned earlier. This time, I wasn't panicked: weaning at 16 months was fine with me. I didn't love that it wasn't on her terms. But more importantly, nursing is the easiest and best tool I had to comfort, calm, and distract her. I feared taking that option away would actually be more physically demanding on me. It just seemed counterproductive.

So even though extended nursing has documented benefits. I really feel like Zoe is the one giving me the gift.

Tuesday, November 27, 2012

But, you look so good!


When you have a chronic illness people like to tell you...

"But, you look so good!"

This is maybe the nicest most annoying thing in the world. Yes, if I am feeling well enough to make it out of the house and see people, then I'm probably not going to look like a truck hit me. I'm going to be wearing clothes, and I am probably even going to smile. People often equate happiness to wellness. They think - well if she is smiling and having a good time, then she must be fine.

I can smile and have a muscle spasm at the same time. I can tell a joke while not being able to see so great. Arm weakness doesn't keep me from laughing.

Now that I'm feeling so much better since my little episode in early September, I pick up on all the things I stop doing while not feeling so great. Like showering. 

Here is a guide...

1.) Am I wearing jewelry?

I just don't take the time to put my bling on when I'm not feeling good.





2.) Are my eyebrows plucked?

When I need a nap after the 2 minutes it takes to brush my teeth, I can guarantee you I'm not going to stand there to manicure my eyebrows.





3.) Is Zoe eating food that requires any effort?

Feeling ok? She can have apple slices. Quartered grapes. Maybe if she's super lucky I could even manage peeling an orange. Not feeling ok? Bananas. Blueberries. Crackers.

Ninja knife skills take a lot of energy.




4.) What is on my camera?

If I'm using a telephoto lens or a flash - that's a good sign.




So the next time I have caterpillar eyebrows and no jewelry - give me a hug.





And a puppy.





Friday, November 9, 2012

Food Friday - Wahls Update

3 months ago I told you about the Wahls Diet. I promised an update - so hear we go.

I am nowhere near actually following every recommendation of the diet.


1.) Grain Free

I have completely cut out gluten and am happy to say it has made a huge difference.

My muscles twitches have dramatically decreased and my vision is less jumpy. I'm also less hungry in general and I feel more rested. I've even lost 10 pounds.

I have eaten gluten on occasion and I don't feel good afterward. I get extremely thirsty and lethargic.

I still eat some grains (rice, corn, or oats) but it is very minimal. 

2.) Dairy Free

I've been dairy free for years and rarely make exceptions. 

3.) Legume Free

I'm not legume free at all, but I am making different decisions than I used to about which vegetables to eat. I am off of obvious soy by eliminating tofu and soy milk, but soy is in EVERYTHING. We are gradually phasing out a lot of stuff at home.

4.) 9 Cups of Vegetables

I eat a ridiculous number of veggies, but I actually stopped counting how many cups of each. I figure if my plate is 3/4 vegetables at every meal, then I am good. I eat leafy greens at nearly every meal. If I don't have greens at breakfast, I'm hungry much earlier in the day.

It definitely feels worth it to me, and I'd like to keep heading in the right direction.

And now I give to you my favorite smoothie recipe.

1 banana, a tablespoon of sunflower seed butter, 1 cup of spinach, 1/2 cup of almond milk, and 1 cup of frozen berries. 


Tuesday, October 16, 2012

With Friends Like These...

It's time for the bike ride update!

On September 29th, the MS society held their first Bike to Bordeaux in Maryland. The course had 3 options: 15 miles, 36 miles, or 61 miles. Yannos and seven of our friends each rode somewhere between 31 and 67 miles. Oh. those numbers don't match the courses? Stay tuned for the explanation.

First of all, the team raised $3,302.00! Yannos and Neil were top fundraisers for the event. They got special parking, car decorations, and a free bottle of wine. Here's the proof.




We sat at the finish line for hours, anxiously awaiting everyone's arrival. Here was our view.




I know, poor us.
Too bad the weather wasn't perfect.


Laura sneaked in behind us. She had a flat tire toward the end of the ride, hence the 31 miles instead of the 36. Do not tell her she went 30 miles because you will get corrected!





Matt also did the the 36 mile course, so he came flying over the finish line pretty early.




In his quest to go as fast as possible, Chris teamed up with an intense biker and showed up surprisingly early. They got lost and went extra miles, so they rode more than 61.




Then we had about a 2 hour wait and Zoe had her first piece of candy. Because that detail is just as important as raising 3k dollars.




After 61 miles and 4 hours 38 minutes of riding, we saw the boys turn the corner! 






  Expert medal grab




 Neil wins the intensity game




Jon wins the best shirt contest





I'm not sure why I started handing out superlatives, but Colin gets best sunglasses.





Zoe was ready for some daddy hugs




Good work, team!




They had to walk up this ginormous hill after the finish line. So unfriendly.





Thursday, October 4, 2012

P52 Week 40 - Sports

As previously mentioned, we had a team riding for Bike MS last weekend.

I volunteered to photograph people coming across the finish line. These are my two favorites.



Tuesday, September 25, 2012

It's that time again

It's that time again. Time to get serious. If you have been paying attention, I've been feeling pretty awesome for about 2 years. Until Tuesday the 11th.

The timing is intriguing. Although March is officially MS awareness month, we have been immersed in MS events this month.

The first was Legal Day, where we got to meet with a lawyer for 30 minutes on any legal issue.

The second was a Women's Breakfast, where my neuropsych did a talk about how women have to restructure their cognitive thinking.

The third is an MS bike ride. Yannos and 6 of our friends are riding 61 miles this weekend. They have raised more money than I ever dreamed and I am super excited about the event. Check it out here if you are interested in donating.

Tomorrow I will have a brain MRI. I've had too many MRIs to count on both hands, which is slightly troubling considering I'm only 30. Multiple knee injuries and a neurological disease will do that to you.

Being active in the MS world is as rewarding as it is disturbing. It is so much easier to ignore the world around you than it is to participate. My mom and Yannos walked away from Legal Day a little heavyhearted. They were quiet about it, but you can watch someone shrink a little when they are face to face with a disturbing probable future. Wobbly. Unstable.

I didn't take the same feelings away as they did. I vividly remember the couple with the wife using a scooter and her husband's hand on her shoulder. The smiling daughter holding coffee for her mom using the walker. Love. Smiles. These are the things you have to look for to stay grounded. 

I imagine they would have felt the same way at the Women's Breakfast: walkers parked in every corner of the room.

But I saw a room full of women who aren't content to sit at home. A woman who rode her scooter 3 miles from the Metro station. Walkers, crutches, wheelchairs, and scooters aren't a sign of weakness. They are proof that you are still living your life. That you are a fighter who cares about participating.

Mothers who raised compassionate children from a wheelchair. Wives who maintain loving relationships despite fatigue. Daughters who care for their aging parents between drug infusions. What incredible role models these women are.

Friday, August 3, 2012

The Wahls Diet

So, I'm reading Minding My Mitochondria, which outlines a diet designed to calm down autoimmune diseases. It is sometimes referred to as The Wahls Diet. If you have MS, you may have heard of a few "MS diets" and two of the prominent ones are Wahls and Swank.

The best part is, they are completely different in what they allow and restrict. Thanks guys, that's not confusing at all.



After reading about both of them, I chose to try the Wahls diet. Not because I think food is magically going to make my neurological disease disappear, but because a little more energy would go a long way in my life. I felt like Wahls was more in line with my current ideas about what helps and hurts me, mostly because Swank allows certain types of dairy and I have been happily dairy free for years.

I sat down with my husband and mom, since they do most of the household stuff around here and discussed the positives and negatives. Here were some of our talking points...

  • It's expensive. Organic fruits and vegetables are expensive. Pastured meat is expensive. Our family already believes in and tries to eat this way, and since my income is so limited by my disability, we can't do everything.  
  • MS is also expensive though. In the long run, 40 extra dollars a week for the rest of my life would probably be cheaper than the costs associated with a few extra relapses or more extensive disability.
  • It is highly restrictive. The Wahls diet is no wheat, no dairy, no legumes at a minimum. Eliminating all grains and eggs is also suggested. I am already dairy free, and although completely worth it, it's quite the hassle when eating out of our house. Have you seen Greek food? It is full of feta, lentils, pita, and yogurt. It is also delicious. It's no fun to give up deliciousness. I am already limited to about 3 things at Thanksgiving.
  • How do we measure the benefit? How do we know if it is worth it? Although I have a lot of fatigue and some symptoms I'm functioning pretty well right now, which makes it hard to notice slight improvements. I'm on the upswing of remission anyways, so how do we know what is the diet and what is natural remission? We also already eat a pretty healthy diet, so I wouldn't expect to see as drastic a change as someone who eats poorly. 
  • On the flip side...what if I am gluten intolerant and it is manifesting as general fatigue that I was attributing to MS? What if my body has to work extra hard and waste energy to digest legumes?

The MS society supports a healthy diet, but not a specialty diet. As talked about in my honey post, I'm a sciency person. I like studies. I like scientific facts. These diets just don't have that. That doesn't mean they are worthless. As a clinical practitioner, I incorporate clinical studies into my patient care, but it is integrated with anecdotal evidence and intuition. I don't always have clinical studies to back up every exercise I do with someone, but I know it makes people better.

The diet can't do me any harm, so we decided it is worth a try to see what happens. I don't make drastic dietary changes quickly because I find them difficult to maintain. I'm going for a life long dietary change. I just don't think taking everything away at once is the way to do that. It took me 5 years to be completely dairy free, but I never miss it now. I had to slowly learn what aggravated me and what was worth it. It turns out, no dairy is worth it for me. But, if I had cut all of it out completely 5 years ago, I think I would struggle a lot more with it now.

I am a stubborn person who likes to find things out for myself. I don't like to be told to eat X, Y, and Z. I like to experiment and see how it fits into my life. I will keep you posted.


Tuesday, May 1, 2012

It's easy to forget

When things are going well, it's easy to forget that anything is wrong.

That sounds intense, but what I mean is when I am in remission, it's easy to forget that I have a chronic neurological disease.

It is also my most vulnerable time for being extremely hard on myself. When I am mid-relapse and can't move my arm, it's easy to neglect housework, ask for help with dishes, or take a nap. But when I'm feeling pretty good? That's when I feel like I don't accomplish enough.

I forget why I work a modified schedule.

I forget why I only run one errand a day.

I forget why I need a rest day.

I forget why I do everything that actually helps me function so well.

Remission Me can do as much activity in a day as Relapse Me can do in a week.



Relapse Me is shorter and Remission Me has lopsided eyes. The problem (and it's silly) is that Relapse Me is happy to accomplish anything in a day. Showering. Walking around the block. Cutting my own meat at dinner. Remission Me isn't happy with anything. Suddenly nothing feels good enough even though everything is amazing. Walking 2 miles. Why couldn't I go further? Running 3 errands in a day. Why am I so tired? Cutting onions. Why do I need a nap?

I do this every time too. I slowly improve after a relapse, genuinely grateful for every small change. Today I could read for 5 minutes without getting double vision. Yesterday I buttoned a shirt. Last week I used a can opener. Then. THEN. I hit this wall where I am suddenly so displeased with everything about my functional status.

I think in my head I should be working full time, running all the errands, doing all the housework...you know, the things most people are capable of. Logically, this is crazy face, but who is logical all the time? Certainly not me.

Tuesday, March 13, 2012

My Story

In honor of MS awareness week. Here is My Story.

See what I did there? I've noticed on my MS message board that we love to find the letters "m" and "s" in words and then capitalize them. Like, MiSerable. MySterious. We're super clever like that. Onward...

In January 2006, we had our first clinical for physical therapy school and I did an acute rotation in a hospital.

3 things they do not tell you about being a PT in a hospital when you are in PT school.

1.  You are going to end up with poop on your clothes.
         For me, this was day one. Clothes, shoes, trail down the hallway. It was a great first day.

2.  Everyone hates you.
         You are the mean person making the sick old lady walk around the hallway. In a gown. Without her hair combed. You might as well throw her out the window while you're at it.

3.  You are going to walk 8-10 miles a day. 
          Acute care is exhausting if you do it well. You're moving furniture and people, walking all over the place, standing up all day. It's a lot of work. Plus, the poop and the hate compound the exhaustion.

That last one is really the important one. About halfway through my clinical I noticed that I was tripping. A lot. I ignored it and decided my leg was just tired from all this work I was suddenly doing.

A few months later, I noticed I could exercise less and less before the tripping started. 20 minutes on the elliptical, then 15, then 10, then 5, then walking across campus. One day, after an intense game of Wallyball (if you don't know what that is I don't want to know you) I couldn't move my foot at all.

Did you know there is an American Wallyball Association? You do now.

Here's where my stupidity really started. I didn't do much about it. It didn't seem like an emergency so I didn't go to the ER. I let a few instructors look at it. My orthotics teacher made an AFO for me so I could walk. I made an appointment with an orthopedic doctor because I've had 4 knee surgeries on that leg and previous nerve damage, so I figured it was related to that.

The ortho said it wasn't orthopedic and sent me to a neurologist. Fall of 2006 I saw my first neurologist and in three years, I saw 7 neurologists all over this country (North Carolina, Philadelphia, Cleveland, Virginia). I would say that 3 of them actually cared and tried to help me. Another 3 were quick to give up, and 1 told me I was insane. For real. He sent me a letter through the intra-hospital mail that was handed to me while I was treating patients telling me I needed a psychiatric eval. I still have dreams about cursing him out.





I had every test under the sun. Nerve Conduction, EMGs, needle EMGs, evoked potential testing, MRIs etc. Even a spinal tap. On New Year's Eve. I know how to party.



Nothing was showing anything conclusive.

Neuro symptoms started adding up. Loss of temperature sensation, muscle spasms, decreased field of vision, double vision, hand weakness, vibration/buzzing in the foot with neck movements, sensitivity to heat, change in reflexes, decreased balance, blah blah blah.

In 2008 I had an episode that paralyzed parts of my left leg. I still worked. I was so determined to convince people I was fine. Looking back, I do not understand how I physically did it.  I would walk with crutches to the hospital then pretend like I was just carrying them around for a patient to use when I got to the department (maybe I did need that psych eval). It took every ounce of my energy to work. Literally, all I did was sleep and work. Often at the same time. If a patient canceled, I would nap for 20 minutes in a treatment room.
 
I got bounced around between doctors, and made my way to Cleveland Clinic. I call it the Disney World of hospitals. They finally did some testing that mattered.


Obviously


We moved back to Virginia and I found a great neurologist who helped me at least treat my symptoms. I still didn't have a diagnosis because it was not clear cut enough for insurance companies, but after my cognitive testing, I got a bill with the dreaded 340 ICD-9 code. If that seems like a foreign language - don't worry. Most patients wouldn't ever notice their code, let alone know exactly what diagnosis it was. I just happen to write that code down almost everyday when treating patients, so it was one of the few I have memorized. It just meant I had finally been given the diagnosis of MS

My last relapse was April 2010 and it has been a glorious 2 years in remission. I'm the strongest I've been in years. I owe some of that to luck, some to pregnancy, some to my family for allowing me to go at a slowed pace, and some to myself for learning what energy conservation means.

And that is My Story. A very very short version, believe it or not.

Tuesday, March 6, 2012

I Remember Running

I feel like a giant jerk face for even saying I identified with a book about ALS, but I did. Let me start by saying that having MS is not even close to having ALS - besides the fact they are both neurological diseases.

I feel guilty finding similarities in the two because comparing a disease that is rarely fatal to a disease that is almost always fatal is like comparing the flu to pancreatic cancer. I like to read personal memoirs from people who have diseases. Mostly because I find it interesting, and partly because I treat people with these disorders and text books don't give you that human insight. Also, if I end up being able to recommend a book that will help someone through a rough patch, that's a plus too.

So, here are some passages that I really connected with from I Remember Running, The Year I Got Everything I Ever Wanted - and ALS by Darcy Wakefield.

"Someone asked me if I was prepared to be a different kind of mother than I'd always imagined. It was a good question - I always figured I'd be the mom who plays basketball with her kids and bikes and hikes and swims with them."

I don't think I am prepared for this. When I picture Zoe at running around age, I am right there with her. Running in the park until she's exhausted...passing a soccer ball for hours...playing at the beach all day. If I am honest with myself, I won't be doing these things with her. At least not for the time frame I would enjoy. I could probably kick a ball with her for 10 minutes, but that activity would make others not possible. Energy is on tight reserve. I can do moderate things all day, or I can do one high energy activity and then nothing else. I try hard not to put myself down for the things I can't do, but this statement really helped me.

"I know now that there are all kinds of mothers. The qualities that will make me a good mother are qualities I haven't lost with the ALS; that if anything they've only gotten stronger."

Another statement...

"These days, my body considers a good workout getting the groceries or doing the laundry, taking a shower or getting dressed."

Equating these daily activities to a workout is so spot on. In the middle of a relapse, I feel more tired after washing my hair than I used to feel after working out for 2 hours. My body works HARD to do these normal things. Caring for a 9 month old, taking a shower, and doing a load of laundry feels like a marathon. I certainly had no interest in running a marathon when I was healthy. Healthy me wouldn't have done the elliptical for 30 minutes, played racquetball for an hour, lifted weights for an hour, and gone to a 90 minutes yoga class all on the same day. If I had, I certainly wouldn't have expected to do the same thing the next day. I can't ask that of my body now. One thing a day. Two on super good days. More than that is unreasonable and unfair to ask of myself.

I really enjoyed reading this book and I appreciate that Darcy took time out of her too short life to write it.

Tuesday, January 31, 2012

Fuzzy Math

Last week I listened to a teleconference on cognitive changes in MS from the National MS Society. If there were one aspect of my story that I generally avoid talking about, it's the cognitive problems. Sometimes though, talking about the harder things does the most good.

Tuesday, November 22, 2011

A very merry unThanksgiving!

Let me preface this by saying that in actuality, I appreciate almost everything I see or do on a daily basis. I'm incredibly fortunate, love my life, and am thankful for most things in it. Isn't it just more fun to complain sometimes? In honor of Thanksgiving, here are 5 things I am not thankful for. Oh sad panda turkey.


Sunday, August 21, 2011

The K'tan

So, why the K'tan and not other things? I researched a lot and decided the K'tan was the best option for me. First of all, I was having a baby in the summer. I didn't want something bulky like the structured carriers for older babies that have a huge padded insert for newborns. I also didn't want something that had a ton of extra material that was going to be wrapped around me like a mummy, because with Multiple Sclerosis, heat is not your friend.

I guess that's the first time I've mentioned Multiple Sclerosis. The fact that I have MS factors into EVERY decision I ever make. My big worry with a sling was that if I got something I had to wrap and tie around me every time I wore it, I would get exhausted quickly. To be honest, I've never tried a wrap like that, so I can't really comment on them. I figured if my arm is too weak to fold a sheet, then those types of wraps just looked too hard for me.

The K'tan is two loops connected by a band and it can be worn in many different ways, which gives your baby a lot of options depending on what is going on. I wore Zoe for the first 6 weeks in the kangaroo position, then a couple of weeks in the explore position, and now we use the adventure position when she's super alert. Check out their website for pictures and instructions.

Update: 12/2011

We walked 5 miles in NYC and Zoe was in the Ktan the entire time. She even walked across the Brooklyn Bridge.






I also started wearing her more facing out like at the Old Town Alexandria Art Fair. She is an art lover obviously.

It a little modified from the position on the website because I'm more comfortable when I leave her with one arm out instead of both of them being under the sling.

I have never worn her in anything else, so I can't really compare it to any other babywearing options. It was super easy for me and very compact to carry around so it was always with me. It is sized so if you and your partner are different sizes then that may sway you to a different carrier. Yannos and I are pretty much the same size, but he had a hard time being comfortable so we'll be looking into a backpack style carrier soon for him.