Friday, July 06, 2012
My bloodwork looked fine again this week (as it always does) so they've agreed to put me down to 2 days a week of TPN. I'm ready to be done with it. Even if I lose weight at this point the TPN is over and I'll be going to a J-tube.
I got about 11 hours of sleep in a 12 hour period today. I'm still exhausted. I was woken up at about 7 1/2 hours and again an hour later by the phone calls from my infusion team, but both times I barely stayed awake while talking to them then was out cold again. I take so many meds so I can fall asleep then I sleep for such a long time. The nurse for my doctor in Milwaukee was supposed to call me this week about what changes they want to make because of all the issues I'm having, but she didn't call. I want them to get me onto the 4 day DHE to try to break this migraine, as nothing else seems to be working.
As for weather, Minneapolis hit 102* today - even hotter than they thought it would be! (We broke a record on Monday with 99* and again on Wednesday with 101*, with the heat indexes hitting as high as 112*.) A warm front is stalled, splitting MN in half - with a 30+* difference from the south to the north! It's in the high 60s in the arrowhead! Tomorrow is supposed to start a cool down, taking the metro into the mid 80s for the next several days. That's awesome, as I have a doctor appointment on Monday then the concert on Tuesday.
At about 10 pm I drove to Walmart to pick up a few items. They have 40 count packs of Rice Krispies Treats for under $9! That's 22.5c each. (I got 3 boxes, as they digest easy and I'm addicted to them.) I've been trying to find more powdered Gatorade to add to my miralax and water, but it seems like they're cutting back and phasing out the individual powder packs. Grr! I also picked up more pjs - a clearance top and cheap pj shorts. Same top I had gotten a few weeks ago, but instead of buying a similar bottom that was more expensive (like last time) I found cheap shorts that matched one of the colors in the shirt. Since I spend most of my days in pjs and many of mine are in desperate need of replacement (the shirt/shorts I'm wearing now doesn't match at all, the elastic on the pants is shot so they want to fall off and the shirt has a few holes.
Thursday, June 28, 2012
I bought this dress a year and a half ago. With the weight I lost it was too loose for awhile, but now it fits well again (it's a size small, but fits more like a medium). It was 90% off and cost only $6! But I've never had a place/time to wear it. Until now - hopefully!
I'm going to buy a ticket and hope that I can make it to the show. I'm planning to wear this dress. Instead of the sleeve I have in this picture I'll wear one of my cut up tube socks that I prefer to wear to hide my PICC. As much as I'd love to wear heels with it, neither my feet nor my balance will allow that. So I'll probably wear socks (or my compression stockings - still waiting to get them and see what they look like) with white canvas shoes.
So what do ya'll think? Will this dress help distract from my PICC and from showing how sick I am?
My friends' band could be considered power pop punk rock, so wearing a sock on my arm really won't be all that out of place. Here's a video from a show from several years ago:
This is one of their earliest songs that many fans even in 2007 didn't know well. (I've known them since 2004 but saw them the 1st time in 2003 months after the band came together.) I was at this show and made him mess up. When he sings 'nothing more' I'm in the crowd screaming the same words, which made him laugh so hard he missed the next 2 lines of lyrix! At 1:35 during the pause, if you turn it up you'll hear me on the other side of the crowd screaming "1-2-3-4!" which he says in the recorded version on their 1st CD that most of the fans have never heard. Ah, memories.
If you've heard Quietdrive before, this is the song you probably heard. I was also at the show this music video was filmed at. I was mad at the lead singer all night and I think it was during this song that a friend in the crowd with me told me something nice he had said to her about me. After the show he basically begged me to talk to him - the fans around who heard it were seething at me! Yeah, he and I love to hate each other. haha
I could talk about them for a long time, share tons of stories, and bore all of you like crazy. So I'll just leave it at this. But know that dressing down this dress is not going to be strange at all in this setting. I've worn combat boots and skin tight clothes to their shows more often than anything else for the over 8 years, so the strangest part will be me wearing something this nice! haha I'm hoping the shock of me wearing a nice summer dress will keep them from realizing how much sicker I am than they've ever seen me. The last time they saw me I had just been diagnosed with GP and had lost only a little weight but still seemed pretty healthy. I'm kinda glad they didn't see me when I was underweight.
Thursday, June 28, 2012
The social worker I was assigned finally called today. She's coming to my house on the 3rd to help me with paperwork and going over everything. I'm glad she'll be able to see me face to face and see what it's really like for me. As much as I hate when it happens, if I black out while she's here it will really make an impact (not that I'll be trying to do it!). I also called for the last appointment I'm waiting to schedule in Milwaukee next month. They're going to try to squeeze me in the day before my 2 other appointments and 1 blood test on the 27th. This way I can fly in on Weds evening and fly back on Sat morning.
Also, friends of mine are playing in a small club inside First Avenue (where Purple Rain was filmed) on July 10th. I've been to First Ave many times, but never inside the smaller club, so I'm a little apprehensive about going. Still I really want to go. I haven't seen this band in a year and a half and this is the ideal way to see them, as I can't be in large and rowdy crowds. It's a Tues, so it shouldn't be a drunken fest either. I called the venue and asked if they would be able to have some kind of disability reserved seating for me and I was told to call that morning and she'll set it up for me. Yay! I think I might take the risk and go. As much as I hate driving myself downtown at this point, I don't want to be constrained by taking disability transportation. If a friend can make it up from Iowa to go to the show (she's trying to work it out) I'll probably ask if she can pick me up or at least if I can meet her somewhere to drive me downtown. The other option is driving to the Mall of America (15 minutes) then hopping on the lightrail - but that means having to walk 2 blocks to get there. Never would've been a problem before, but now it might be. Just things I'm thinking about. The good thing is I've been taking Tuesdays off of my TPN, so unless things drastically change, I shouldn't be on a bag while there. I just have to make sure no one grabs my arm or hugs me too tight (which some of the guys tend to do hahaha) because it could bother my PICC.
Speaking of, since I've been able to maintain my weight, I'm going to ask about going from 4 days a week of TPN to only 2 or 3. I need to wean off more to see if I can still maintain without the extra calories. I can lose 2 lbs on days I'm not on, but I'm sure part of that is the drop in fluids because I can't drink as much water as I should, which is much less than the fluids I get from the TPN.
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