A thoughtful place for me to come and share my struggles and accomplishments as a mom with multiple sclerosis. I am an optician and a weaver who loves music, dance and laughter! I have a bright and intense 6.5 year old son and an active and outgoing 3.5 year old so I am often trying to find a way to live the life I dream of, within my physical limitations.
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It feels like such a long year! I still don't feel like myself. I'm feeling run down and haggard. I wish our situation was one where I could stay home and care for myself better. My eldest is struggling and it's an added burden that is maxing me out. I need to get back to taking care of myself physically but I don't know how I can possibly fit it into my schedual at present. I'm working hard to increase the type and quality of food made at home which is huge since I haven't been doing much since I started feeling MS-y. I keep hoping that I will just snap out of it but that doesn't seem to be happening. I'm not sure what my next steps are but I'm going to keep putting one foot in front of the other until I make it somewhere. Today I got out of bed and had a shower, go my kids fed, dressed and off to school. I've worked a full day of work and will soon be going home. Once home I will do a bunch more stuff like feed myself and get ready for tomorrow. Maybe I'll change the laundry over, make dinner and put my feet up. I'll make it through today and face tomorrow tomorrow.
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 an…
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.
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 😉