While I typically have terrible luck with TB in general meaning usually my stomach wants to stab me multiple times that didn't happen. However I can say that I genuinely felt off after eating said meal. I'm not sure if it was in fact the chili cheese goodness, the fact that the day was a high steroid dose day or just because my hands were already tired and I pushed them over the edge especially with all my food prep.
I can say though that I honestly feel better on the days of 20mg of prednisone than the 60mg days. At first it was quite the opposite but I can't help but notice the change now that I have been keeping track in my planner. Weening off these things is going to take an eternity at this point with only 5mg drops every 2 weeks but I'm hoping that once they are done I can shed some of this extra weight.
It puts so much more pressure on my already weak knees. (Cue the music "I get so weak in the knees I can hardly speak...") ha I just think getting around this house will he easier again once I am not all pumped up like the injected chicken in the foster farms commercial!
Anyway as I was saying I can tell a difference in how I feel when I prepare meals at home versus dining out.
As much as I would love nothing more than to be lazy and not cook anything I just can't do that anymore.
Cooking in general is difficult though as I'm not entirely sure how to use the big oven while in my chair and the toaster oven isn't quite large enough to cook everything I'd like to cook.
Maybe I should look into perhaps a larger toaster oven?
Yesterday my friend Nikki came by to hang out for a bit before going to the hockey game with Andrew. Was nice to see her and pics of her new place and just catch up a bit. We discussed a lot of fun stuff as well as my health. I showed her some of the pamphlets I received when I joined the GBS-CIDP site. I wish I had joined it sooner actually! There was a pamphlet for me, one for my care giver and one for PT as well as a newsletter and some smaller brochures. A lot of information!
I'm still waiting to hear back from the SS office in regards to my status. It said I could check online within 5 days. Lazy time I checked all it said was that it hadn't been processed yet, that was before I received my letter from them though. I'm hoping they have received my statement by now that they requested. I know I will have to exhaust my funds through the state first but I just want to know if I will be approved. That will seriously lower my stress level a few notches.
Today I woke up at 7:30 when my child like bladder decided it had to pee. I was hoping I could fall back to sleep but didn't have much luck in that department. I made myself some breakfast which was pretty amazing of I do say so myself! Lettuce, tomato, avocado, turkey bacon, light mayo on a flat out wrap. All those years I refused to let the guy at the cafe below motor put avocado on my BLT and man was I missing out! Avocado is seriously so good! I've really been craving it lately. I'm not sure if that's my body telling me I need something in it or what. I've been feeling the same way about fish and I typically don't even like fish. Was thinking maybe a fish oil supplement would help with that but as of now still have a craving!
Anyhow so I made breakfast, took all my pills, brushed my teeth, combed my hair and sort of got dressed. (By sort of I mean I put leggings on under my night gown and put on a bra lol).
My friend Keara was coming by for lunch and I totally forgot to remind Andrew to unlock the top weird latch on our front door. So when I text him he said he want sure if he had done it so I headed downstairs.
I got to the main floor and came over and sat in my red chair. This thing is in serious need of a replacement. Maybe I will browse ikea later and see what they have! And from said chair I could see that the top latch was in fact still locked. Now this is the type that you have to push up and then flip over. I psyched myself up saying I was just going to walk over there and do it real quick and it wouldn't be an issue.
Well I would love to say that is how it works. Let me start by saying this is a new walker I am working with and I had bought these "ski" like glides to make it move easier across all surfaces. While that is in fact the case it makes me nervous because it glides so well! So I get up off the second set of stairs walk over to the door don't feel comfortable do a circle, try and sit on couch but not enough room to get walker in there so sit on ottoman and crush tissue box. Sorry tissues, but there really wasn't another option!
So then I noticed an umbrella behind our shoe rack. So I slide over there on my bum, unwedge the umbrella and attempt to open the latch that way.
This goes on for a good 10-15 minutes as I can get the latch to go up but not flip it over. Rollins and Toast are staring at me like I'm an idiot at this point.
After 15 minutes I decide it's clearly not working and go back over to the couch where I boost myself up and sit for a good 10 minutes and assess the living room for any other items that may help me open the door. Since I found nothing that would be helpful I decide I will walk over there again and try.
I get over there with my right side facing the door which I attempt to undo the latch with my left hand since I feel more balanced if my right hand stays on the walker. This doesn't work so I then do a little turn around and get my left side right up against the door. I am able to look up at the door for a few seconds to find where the lock is and get it unlocked! SUCCESS! At this point I would love to shout and give myself a pat on the back but Instead head back to the couch for a break.
At this point I am feeling accomplished but also a little worried as I now need to go back up the 8 stairs I came down to get to the main level with the bathroom. That is fine in itself but I also have to take my walker back up with me which I have never successfully done.
So I scoot up a few stairs then realize the walker is too far for me to reach so I scoot down. Then I try and balance it on the stair, over my arm, in between the rails and nothing works. Then finally I decide to try and balance it upside down on the foam handles and it stays on the stairs! So I get up the stairs and back into red chair. At this point I am feeling pretty amazing about myself and my accomplishments of the day even if they are small.
I text Andrew, my mom and Keara to tell them all the good news. Also to tell keara I look like a scrub but I'm not going up 16 stairs to change before she gets here ha.
I would have also texted my MT (Misery twin in case your wondering) but she's on a cruise and not available via text. Dislike!
So here I am sitting in my red chair, chilling with my cats and freezing my butt off cuz this night gown is like a razor back top. Typically I am always sweating yet right now I am freezing. I should have grabbed my hoody from level one but at the time I was sweating after trying to umbrella fuck the door latch.
I'm looking forward to this weekend. I hope andrew and I can go do something fun, perhaps maybe a movie if we can find one that isn't too long and take my good wheel chair. Which I kinda think I need a second one of those as well! One to keep in the house and one for travel.
Friday is PT appointment and I will be getting on the treadmill for the first time since October. I'm hoping it goes smoothly. I hate the harness but I like getting on the treadmill and getting a walking pattern going. I just wish I could do it more so that my brain would finally stop overthinking what I'm doing while I'm Frankenstein walking! Seriously I walked way better when I was drunk. But since my liver enzymes are high and I'm trying to lose weight (plus doctor said avoid sugar) I have been avoiding alcohol.
Saturday my coworkers are taking me to brunch and possibly for a pedicure. I'm still not sure I'm sold on the pedicure portion just because well I haven't had one in years besides from my mom. I don't know how comfortable I am with someone touching my feet currently. Mainly because they are so numb! At the same time though my feet could definitely use some TLC. They may need sand paper to get these bad boys to look good! Also I think it's kinda spendy to get your nails done out here, but I guess a one time splurge is ok.
Anyhow I'm looking forward to the upcoming weekend and perhaps getting out of my house. Some sunshine would do me good!
I hope you all are having a good start to your week!
<3 xo!
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