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Showing posts from March, 2012

better late than never

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 not…

Happily home!

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…

Post CCSVI

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 …

Kicking MS ass

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

Here we go...

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…

Getting ready to go

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 b…

Another day down

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 …

Heuros and Neuros

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…

Neuros, CCSVI, and me

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 cause…

Hello Out there

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.

Listening to on anothers needs

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 himsel…

A couple of small victories!

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 m…

My face on this MS relapse

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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

Not a Perky post (Cussing involved too)

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 spec…

Little moments

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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 tog…

Bath time play as a distraction

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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.