MS Mom

This is the great thing about the blog. I can come here and said what I need to say without worrying about the reader not being interested (not because u don't care about you dear reader but you're faceless to me which helps). I can also keep coming back to whine about how crappy I'm feeling as many times a day as I want! Freeing really! I rarely complain and actually have a hell of a hard time talking about myself and asking for help when I need it. I'm sitting here dreading going into work tomorrow. I'm just not up for it but don't have the heart to not show up. It's an extent small operation and I made commitments to my boss so I'm going to try to keep them. But I'm tired. Not like I need a nap tired but a bone weary kind of tired that doesn't stop. I'm in pain, like nerve pain that feels like my limbs are on fire, my back is killing me and I have continuous muscle spasms. My body isn't doing what I tell it, I command a lab to rise and...

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.

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...

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...

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...

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...

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...