MS Mom

OMG people actually come here and read this!! Lol I'm trying not to let that have an impact on my unstructured rambling and cathartic release. I saw the neurologist today. It's so amazing to have trust in my doctor! I can't even explain how huge that is. I had some bad experiences in my first few years. This Dr has now seen me both healthy and sick. That's huge in this situation. She's prescribed me steroids to help encourage healing. So I'm going to take a couple days off from work to let the steroids do their job. Her and I also discussed trying another long term disease modifying drug. So I've asked her to start the process and if pharamacare agrees to cover it then that will be my next step. She's also going to say me up as a patient at the ubc ms clinic which means more resources when I have a flare up like this. So all positive things. If course I managed to screw up my parking and got a parking ticket but other than that all positive &#12852...

Yuck. Just yuck. I always forget how hard it is to deal with changes to the status quo in relation to my MS symptoms. I walk around most able to take in stride the pain , numbness, cognitive fog etc that's always with me. Then things shift and is uncomfortable. Not just physically but on a deeper level where with every breath in aware of my illness and my fragility. That wears at me more than the symptoms I think. Constantly being reminded that my body is betraying me. And it is. The stairs are my current challenge as I have to climb them many times a day and my leg muscles simply don't do what my brain asks of them. Simple commands to lift up and put down each foot & leg are misunderstood. My heart is willing but my body isn't able to make it happen.

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, ...

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...

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...

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...

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 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...

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...

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...