MS Mom

Some days are shitty. Since days are amazing, sweet and beautiful.  And the time and difference between these types of days its hard to anticipate. I'm having a hard time blogging recently. I think its because without symptoms the theme of my blog seems silly abs hard to maintain. I also feel like much of what I wanted to blog about a year ago isn't as relevant for me. I keep intending to revamp the blog, give it a new name and a new purpose then my motivation dissolves And the blog remains postless. I'm blogging today as a way to recognize the 4 year anniversary of my brothers death. I didn't feel liked calling attention to my grief in facebook or via email or any other way this year. I'm deeply saddened And miss my brother but didn't want to share that grief this year. I'm not sure why it felt good to have people know and understand before but not now. I've been doing a lot of work on myself again and that may be part of my desire for privacy? Hones

I'm not sure what's going on but it's something. I don't feel like myself somehow? My head is spinning when I stand up once again so I'm fairly sure my veins have re-stenosed, I wish I had a way to confirm that but I haven't had any "head rushes" since my surgery. I'm fairly sure that's not the only thing going on though. I'm feeling emotionally off. So sensitive yo rejection and so easily hurt. I'm also feeling kind of "melancholy" for lack of a better explanation. I feel like I need a break but from what I'm not sure. I am sure the rain hasn't been helping and not having a car is slowing me down but I think all that is incidental I'm going to have to go talk to my doctor and maybe see a therapist? I've taken antidepressants but I've never followed up by talking and I'm thinking that might make the difference. On a different note I've been enjoying the yard at our new place and so has Aidan. I

Apparently when I'm not having many symptoms my inspiration for blogging wains. Humm I can only imagine that this is because I write what's going on with me and when I'm not sick things seem to trivial to blog about. Not that nothing is going on its just that I'm not a professional and I don't have any experience I'm just figuring it out as I go. What do I believe as a parent? I know my son was born a humane being with thoughts and feelings and I believe in treating him like one. I don't talk down to him or assume he doesn't have feelings or opinions. I try to help him express himself and understand his feelings. I know my son has preferences so I try to respect those as I would like my own preferences respected. I believe my job as a parent often boils down to letting him experience the world the way he chooses and I'm along for the ride to make sure he doesn't die ( or get too injured). I say this casually because I let him do things othe

I have not great points for this post so I'm planning in rambling so if you want a blog post that makes tins of sense please look elsewhere lol. My health: my chiropractor helped but my energy level stinks. I'm taking blood thinners to try to figure out if it's my veins shutting or if it's something unrelated. I'm praying that it's not a relapse because I really don't have much fight in me at the moment and I just can't face another MS relapse so soon. Thankfully no pain and few little mobility/ numbness issues so its more inconvenient and scary than anything. Parenting: I love my kid! He's seems so grown up since he's really started talking. We've got a talker and I can't express how much I love it. Even when it's inconvenient and frustrating (read often lol). It's another stage so it takes some practice figuring how to communicate effectively in this new medium. Aidan is busy counting everything that comes in pairs and ident

Okay so I'm trying my hand at writing a little bit about what I've learned so far on my parenting journey: ~ I truly know that I don't know what I'm doing lol ~I follow no one 'style' of parenting except the one I constantly create and re-create ~I've done things, as a parent, I regret but none of them involve Aidan ~I believe infants are people and should be treated as such. From day one, they don't gradually develop consciousness outside the womb they do that inside the womb. ~ Kids are amazing little people and so fun to be around so take the time to find activities you can both enjoy ~Letting Aidan figure out toys, and items for himself instead of molding it for him is way more interesting to watch and gets easier with practice. ~This includes allowing him to take risks like climbing and jumping or other things where my first reaction is fear and all I want to say is 'no, stop, don't or worst of all let me show you how,'. Instead

Wild somehow over a month had passed without an update. Things have been really busy. We've been moving and that's taken a lot out of me. We are finished as of today and hand the keys over this weekend. I'm really happy it's all done and that now we can start working on settling into our new life. We've moving in with my in-laws. Totally new experience as I barely know them but eye opening and wonderful for Aidan who is finally getting to know his Granny and Grandpa. Aidan loves it here. More people to play with and talk to and so much space. He's been busy practicing stair climbing and door opening since we've never had stairs or this many doors. Having a yard is amazing and even just having the hose for him to play with has turned into a big deal. I found a free sandbox on Craigslist- bought a couple of bags of sand and Voila a ready made 2.5 year old's paradise! It really helps that laundry is right down stairs (and free as compared to the $2 a wash

Where does the time go? I fell so far behind on so many things while I was sick I really have felt bogged down trying to get through it all. And of course it's all financially related (high stress for me!) like my darn extended health claims which they are giving me a hard time about. ugh. Anyways that's my compliant for the day. Hopefully I can get that stuff sorted relatively quickly. It also looks like we will be moving if we can get the details sorted. My darling husband is seriously considering going back to school. I'm so proud of him as it's not an easy decision to make when you are in your thirties with a child and a 'dependent' wife. I know it will be best for all of us in the long run but it will require some sacrifices which may include moving in with my mother and father in law. AS I say I think it will be worth it but it will be a change and the sacrifice to our privacy (and theirs) will surely take so getting used to. We just have to finish sorting

Thinking aloud. I've read two articles recently talking about setting realistic expectations for moms. The basic idea is that blogs and pinterest and other online sources set up unrealistic ideals for moms and especially stay at home moms. I found this kind of saddening to hear. Don't get me wrong I idealize others more than I should but I'm usually about to ground myself and I know that no one is perfect no matter how they portray themselves to others. My experience has actually been that those who put the most effort into looking like they have their shit together tend to be the most messed up - not always but sometimes. I have gain so much insight, support and inspiration from Facebook, pinterest and blogs that I'm saddens to realize that I've been lucky and selective about what I read. I've finally been using some of the ideas I've seen on pinterest and other blogs and I've found a lot of freedom in having so many great activity ideas to choose from

Ya ya I know obviously play is fun but when you've been unable to really play with your kid for a month and a half the value of play increases dramatically. I took so much pleasure in watch Aidan come into the living room and as soon as he saw the sand box he ran over and began playing immediately! Of course he had to get as many trucks as he could working in the box because everything is about trucks to my 2 year old lol. He built a road in the sand using done tile samples I snagged yesterday (I think I will put more of them on my shopping list for next time). We had a canceled play date which required a quick activity so we agreed on doing our first collage project together!! I think I had more fun than Aidan! It was amazing to see how much he has developed since our last art project. It's great to get a chance to talk about and interact with lines, shapes, colours and textures! Again so easy and so fun. All you need to do is save scraps of fabric, paper, bottle caps, film,

Now that I'm starting to feel better I'm getting back into living and loving the way I enjoy best. Parenting and bring creative. My dear friend who blogs at www.babyfromscratchblogspot.ca and I went out on an awesome adventure (kid free I might add)! Such a treat. She introduced me to Urban Source here in Vancouver. They carry recycled materials that are perfect for kid related projects and explorations. My haul cost a mere $30 and that included some bigger items. I'm super happy with my finds and can't wait to unveil more of them to Aidan. Here is what we created this afternoon. I would like to include a little note explaining that this kind of activity is amazing when I'm feeling less than 100%. I don't need to be overly involved and set up and clean up are relatively easy and Aidan does much of it himself now. The floor isn't always the most comfortable play space for me so one adaptation is to find a table (we love the coffee table as it allows me to

Sorry for the delay in posting again. I've been up and down and back up again since coming home. I'm also feeling a fair amount of pressure to 'feel better' real or imagined I feel like everyone wants to know how I a and the answer is I don't know. I do feel better but I'm aware that I've had surgery and my body keeps reminding me with twinges and subtle reminders. I'm busing really easily and I'm currently sporting some major whoppers. The bruising is due to the blood thinners that I've been prescribed. The recommendation is 6 weeks taking Plavex and lose dose aspirin to help reduce clotting. I was told to reduce the Aspirin if I started busing (which i have done) but I'm not sure I really want to back off the Plavex. Thankful I will see my GP on Friday and I hope she will be able to advise me one the best course of action. So back to MS symptoms. The pain in my right leg is gone. It's a huge relief. I still have some other pain but no

2 days post surgery and I'm starting to feel better. I'm home and that feels excellent. Sadly, even though I cleaned what I could before I left, the house was no where near clean enough for me when I got back. Ugh so I started cleaning immediately (yeah that's the kind of person I am sorry lol). But the good news is that cleaning didn't burn me out the way it did before I left!! yahoo!! Yep I just said yahoo about cleaning- deal with it lol. I didn't do nearly our whole apartment or anything even close (I'm aware I'm still recovering from surgery lol) but I did get my kitchen look good and almost as detailed a clean as I would like. I just need to pull out my steamer to really get the little stuff but it's going to be a process for sure. One room a day should get me to where I want to be soon enough. As you can likely tell I'm also in significantly better spirits than I have been in recent weeks! So nice to feel more like myself for a change. It

It's done! Surgery went well. Vascular access center staff was amazing!!! Dr. McGuckin is kind and charismatic. I couldn't have asked for a better experience. Worst part? No bring able to eat! Lol I am not a person who deals well with low blood sugar. I went in for 8am filled out the paper work got into a gown, had an IV started and waited a few minutes to meet the doctor. We met Dr. McGuckin and went over the risks, expectations, post procedure recommendations. and a little friendly banter. I waited a little while (it didn't seem long at all) and then they took me in to get prepped after to prep work was done we the nurses and I chatted and soon Dr. M came in and he got to work. I don't remember the whole thing but I do remember the first 2 veins being opened clearly and the third vaguely. The first area (the left iliac vein) ballooned felt like a bad menstral cramp so a totally manageable amount of pain. The azygos was the barely noticeable ( I'd had more drugs

Yep you heard me. I'm back and fighting. I'm in Seattle and ready for bed but first an update. I'm going in first thing in the morning for surgery. No calls with delays or anything so I'm hoping that means the green light is lit. I check in a 8am. I'm feeling nervous but lucky. We made it here with relative ease (though the nexus lane was looking mighty enticing while we waited 45min). I found a really sweet little Buddah charm that reminds me of my dad (who died a longish time ago) which left me with some warm fuzzy feelings. I spent a few hours hanging out with my mom at the mall and that was awesome! She is a super rad lady and I'm a lucky daughter. Now to snuggle with the man of my dreams. It's all good! Tomorrow will bring whatever it brings and I will deal with it one moment at a time. Deep breaths. Goodnight interweb I'll update you when I'm back from surgery. Xoxo M

So today is a getting ready day. I'm not sure how it happened but everything seems to have come together. We have rented a minivan so we should have ample room. I have delegated in car entertainment to Devin- I'm sure it will include more electronic stuff that I hope to use but that's okay. I still have to pack and double check all our stuff but even that seems fairly straight forward as its only a few days and we can buy items if we've forgotten them. I'm getting a little nervous now. Mostly it's manifesting as nervousness about getting the van, hitting traffic, and being stuck at the boarder. I'm fairly certain the moment those event pass it will all turn into nerves about the surgery. I know the risks are low but I do worry about eventualities if something were to happen to me. Scary thought. Mostly my poor mom, then Aidan, then Dev. Poor guy not that he deserves last place in that race but I really don't know how my mom would handle it if I died. L

So another day full of gratitude. Got some stuff done thanks to my amazing mom. We have a minivan rented- which will make things easier as far as traveling. Used many of my remaining airmiles but it's worth it I think. Now to get packed and sorted. Aidan's new doll friend arrived today!! LOVE him!!! So cute all I want to do is run out and buy some fabric to start making them matching clothes! Ahhh! Hope this isn't going to end badly lol. I'm feeling creative again so that's good. It hard though having my brain but not my body. Body update I'm feeling a bit better after napping much of the morning. I think the steroids have helped! Yay. Wishing I could take my regular supplements as my gut says they would help heal me up a bit faster. I'm also not able to take Advil and I'm missing that from my healing also. So interested to see how we all fair on our road trip. Small spaces with the little man may or may not go well. Hoping we can plan to get him

I was hoping to have better news but I'm feeling really rough. Ugh not my best day. Struggling to keep upright and awake. My brain feels good but everything else isn't working as I'm used to. The steroids are done so I was hoping that my need to sleep would have been reduced. It may just be a bit of build up burn out but it feels pretty MSy yep sounds messy. So many wonderful thanks yous to send out to WAMS and people who attended, donated and everything else.i feel so loved and supported. It sounds like WAMS collected enough for my treatment and accommodations. Hoping there is plenty to help some of the other ladies in need. I'm not sure what else I have to share besides my huge feelings of gratitude for my amazing friends and family. I'm truly blessed and appreciate all the support I've received. Next up getting my chores done and getting prepared for surgery Thursday. I'm seriously hoping that this lack of energy will fade and make the drive that much

Okay firstly I can't help but think Wow I'm really getting into this blogging thing! Who knew? I'm really enjoying sharing what's going on with me and getting it out there. I do hope one day to connect with more MS moms and share some stories and coping ideas. I hate to think about how many people are choosing not to have children because of their MS and it really saddens me as children are so amazing and MS is really crappy and having to choose MS over kids must be extremely hard!! I'm so grateful I dove in being nieve and not really caring about how I would deal during a relapse. I just assumed I would manage but never envisioned it being this hard! Today! Again I'm bless an old friend sep up after reading last nights blog post and offered to look after Aidan while I went to the doctor! It was so helpful especially because today was a crappy day. My balance is way out of wack!!! Sigh. I almost fell over countless time so again so glad Jaimie was able to help

I haven't written in a few days because I really feel like I should have something new or interesting or at least something different to post about but I really don't. I'm so blessed to have so many wonderful friends and family members. My friends and my mom have been taking Aidan out which has allowed me time to look after myself. I have been seeing a massage therapist who has helped me get my pain under control a bit more - Such a huge relief! I've also taken a few more naps which seems to help keep me going all day without as much pain also. It's funny though because I do feel like I'm missing out I mean don't get me wrong I like alone time as much as the next person (dare I say even more than some) ut it does feel strange to be without Aidan as he and I are always together. I miss family days on weekends and taking Aidan to the park. Maybe once it warms a bit I'll be able to go to the park even if this relapse lasts. Currently the cold weather caus

Okay so I'm trying to figure out who is reading my blog. I see there are people checking it out but I have no idea where you are coming from or what you think of what you read. If you have a moment I would love some feed back!! I really started this as a personal kind of diary type place but I am beginning to connect with some more people with MS and I'm seeing the benefit so I'm thinking maybe I should change the tone and post more information about MS and how it actually affects different people.  I'd really love to connect with some other moms with Ms and see what some of their challenges look like.

I've been thinking a lot about why my parenting style is the way it is and what my style is. I follow a number of creative educators on facebook who inspire me to allow my son more fee play but my core instincts and my child's personality had already brought me to may of these philosophies. I was reading about baby lead weaning or in my opinion better named baby led feeding and I love this idea and though I didn't know this is what we were doing this is what we did with Aidan. It's another example of how much my son has taught me. When I'm listening he really does communicate what his needs and preferences are. He began doing this so early that I couldn't help but acknowledged and respect those needs and wishes. Anyways we did purees for his first few reall food experiences- none of the cereals as we had already ruled them out as being to gross and empty of nutrients. but Aidan had been watching us eat and started grabbing at the spoon and trying to feed himse

Wonderful news! Finally. First  I saw a massage therapist on Tuesday and again today and it really helped reduce my muscle spasms and pain! It never fails to help but it also amazes me every time it happens. I'm hoping this will last the weekend as it will surely get expensive fast if I have to go every 2 days lol Secondly I saw a chiropractor and I'm amazed by how much better I'm doing! he only did some very gentle manipulations as he said he prefers to take it slowly with neuro patients but it still had a huge impact! My face relaxed slightly (It looked better right away but I checked just now and it's almost back to were it was the other day. I'm hoping this is just because I'm tired. And my gait was immediately better! I can walk and I even have more sensation in my legs! I would highly recommend looking into this for anyone with MS as it as a dramatic impact and I was actually fairly reserved about how effective I thought it might be. I went in hoping it

So my dear friend took Aidan out this am so I put some makeup on and thought I'd document my new err "look" so here it is. M

So another day. Still anticipating CCSVI but my optimism has been tempered by seeing more and more reports of people who have to go for further treatments when their veins close up. Not that I didn't know that was a option just didn't know the percentage was so high. I'm worn out. My symptoms are really bad- In fact the worst they have been in 6 years. I'm likely going to get a walker before the week is out and half my face is now effected. If I get courageous I will post a picture but I'm not sure that will happen. I've been thinking I need to do a video and document how I am when sick to show my neurologist what my MS really looks like! I am rarely sick like this when I have an appointment with a neruo so they always tell me how 'mild' my MS is and how grateful I should be that it's not worse. Pardon me but Fuck you for telling me to feel grateful for not being worse! Do something to help me instead! Start some testing in Canada. Let the vein speci

So neat to slow down a bit. My MS has made me slow down many times before but this time I've had to be creative to make sure AD isn't more effected. Today he initiated some coloring on his white board. It's so neat to see how much he has learned since we bought it a year ago. Today his art was monochromatic and he was practicing drawing life objects. He would point to his toy box and say this then trace the exterior of the whit board to form straight lines. He intentionally drew a circle and to be sure a little while later I asked him where it was and he identified it immediately. Then he wanted to trace his hands and feet. The way his I interest and understanding develops is so amazing to behold. All of this happened in under 10min but the slow place I'm in right now allowed me to deeply connect with AD for every moment of that experience. It is so much easier to see him for who he is once I've let go of my own preconceived ideas and my own emotions. Playing to

Okay so this relapse has really been crapping my parenting style but I managed to squeeze in some good clean fun by getting Aidan into the tub for shaving cream and water colour play! Then some water play to clean up. Worked like a charm! Got an hour and a half of tv free time and a sleepy kid which to me is time well spent. It also didn't tire me out to bad as Aidan was contained and I just sat there and gave him some play by play on his actions.

So Aidan is really getting the hang of his balance bike now! So amazing to watch what a few months of physical development can do.

Another day. Ugg- Almost a month away from CCSVI treatment! I was really trying not to get my hopes up but that's been tossed out the window as these symptoms drag on! I'm so tired of walking up feeling unable to face the day and wondering how Aidan is going to manage another day with a barely functioning mom! Poor kid- I'm also torn because it's not that I don't want to spend time with him it's just that keep up with all the other day to day things (this really means putting dishes in the dishwasher and tidying up after him) are super tough- and recently he hasn't been napping. Super tough to deal with when I need a nap! Anyways I'm at work today- so I'm trying to think of this like a day off (sorry boss) but every time I do that it's crazy busy lol. Fundraiser is on my mind- but at least I've really only been asked to contribute what I already have collected and sell some tickets. (I was really hoping to do more but this relapse is teachi

Ack! Ever have one of those moments where your fingers respond faster than your brain? That was me tonight I deleted a whole bunch of amazing pics of Aidan and 2 videos as well! Sigh I was so looking forward to blogging about them. I can still describe the but it's not the same without the pics and video :( Today we made our own playdough- best recipe to date. I think this will be my go-to recipe until I find a new one to try. Ingredients: 1Cup Flour 1 Cup Water 1/4 Cups Salt 2 tsp Cream of tartar 1Tbsp Vegetable oil 1 package of Kool aid or food colouring- we added sparkles last time and that was a fun addition!  Mix everything together in a big pot (I recommend a wooden spoon as it seemed to work much better than the plastic one). Once it is smooth (or close to it) put burner on medium and stir. Keep stirring until your dough forms a nice ball. This part seems to very for me every time but if I under cook it and it's still sticky I just add flour when I knead the d

I have so many pictures and thoughts that I've been wanting to up load but all my spare time is being dedicated to trying to get CCSVI treatment and finding for the treatment that's really where my energy has been recently. I also have had a major relapse thought I think it may finally be easing up a bit Thank GOD!! It was such an awful reminder of what MS really looks like- I was not a huge fan and I will admit there were some days I really wasn't sure what I was going to do with poor Aidan. He was watching more TV then I care to share about and it was breaking my heart not being able to take him outside.I couldn't walk as the last time I went for a walk I got stranded (even with the stroller for support) and I really wasn't alert enough to drive. Aidan was a very good sport with me not being as involved in play or being as hands on but there was most assuredly a lot of fall out. I'm putting a lot of hope on this treatment working otherwise I think we are goi

Amazing day playing out if the house. We set off with a couple of dollars and no expectations. The result? Lots a fun. We made new friends, tired ourselves out and had a snack. A lovely end to a Saturday.

Man I love this kid. Today we had a great time doing yoga from a kids yoga video. He was so good at emulating what was on screen it was amazing (and a little scary after a sick day where we did watch TV- it's obviously how much he soaks up from that). Anyways great end to a flu day.

Today was a friends day. We had a play date arranged but it had to be pushed back due to a unscheduled nap. So Aidan I took off to our favorite breastfeeding support group. I've been going there for two years and amazingly (to me anyways) still miss it when I'm not there. So much knowledge that I received there that I still feel I haven't even begun to give back. The amount of love I feel for the lady who runs it over flowed today and for the first time I told her I loved her. Amazing! I surprised myself but there it is. Love is developed and so often hidden. Later my son hugged a stranger and all could think was yep I guess he's just like me. Man I'm proud my son is a people lover. I didn't know I was until he reflected it back at me. The depth of the lessons my son teaches me are beyond incredible. Parenthood has pushed me in ways I never expected. So much change is often hard but, I believe, totally worth it!

What a day! We are trying to find a preschool for Aidan. Apparently it's not as easy as you'd think. Not that there aren't preschool's or that they won't take Aidan. It's a matter of finding a place where we agree with their philosophy, practices and policies on poop. Yep you heard me poop policies. Sigh- Thankfully, I got a time for a education fair locally on Saturday so fingers crossed I can make it and find something appealing there. Yep adventurous parenting includes adventures into the unknown waters of  preschool and such.  Our after noon picked up so I thought I would include some photos Making music! Sharing pretend food! Busy cooking a meal happy in his own world- love these moments- totally absorbed in an activity!

Today we painted a truck. This is a lovey wooden truck we bought for Christmas from the Waldorf Craft fair. It was hand made by a fellow who uses the money he makes to make more toys to give to children in need. How amazing is that? This truck was completely unfinished. I gave to the truck to Aidan at Christmas with the promise that we would do some work on it and even included some beeswax wood polish I had left over from the wooden items I prepared for him. Anyways, today I decided I was up for painting. I would like to note that the last few times we've painted it was a major undertaking. We haven't painted in a few months- what a difference!!! I love this age! Not that he always listens to me when we are working on something, but I now can anticipate some of the problems we might have before they happen (like to many colours on the go at one time) and can work to prevent chaos from ensuing. I also have learned to not play music while we craft (thought it