Sarah Tee Posted July 3, 2023 Report Share Posted July 3, 2023 Today I managed to make a vegie cottage pie, which was exhausting, but it turned out very tasty. And after about four hours’ rest, I also managed to have a shower. Oh, and I washed a few dishes. Usually these would be spread over one day each, so I feel like I did a lot, even if I was wearing my PJs all day 🙂 Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 3, 2023 Author Report Share Posted July 3, 2023 What did you achieve (or not) today? Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted July 3, 2023 Report Share Posted July 3, 2023 Yesterday I achieved driving down the I 95 corridor, through heavy traffic and torrential downpours, from my home in cool, dark, rainy wonderful Maine (perfect for POTS patients triggered by heat and light) to my mother’s home near NYC. Seeing a new Rheumatologist at the Hospital for Special Surgery. Very excited! Last Rheumy abandoned me, too complicated for her so she just stopped responding??? The drive beat me up pretty bad, all joints and POTS flared. And not easy drinking 240 ounces of water while driving 12 hours! I have a “quick pit stop system” allowing for many pee breaks without taking much time! And now I have 3 days to recover, in NJ where it feels like 120* F and the sun is like a heat lamp, LOL. Hiding in the air conditioning and dark. Very proud that I could drive down! Two months ago I had been bedridden for 6 months! Hip hip hooray! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 4, 2023 Author Report Share Posted July 4, 2023 Good on you, @MaineDoug! Maine sounds like a beautiful place. I hope your new rheumatologist works out. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 6, 2023 Author Report Share Posted July 6, 2023 This was kind of a big achievement – I had one of my occasional evening reprieves, when my sympoms disappear around 9pm. (I used to feel better every night, but nowadays it only happens once in a blue moon.) I did some stretches, had a rest, then wiped down the walls of the upstairs bathroom, which were looking worse for wear due to a bit of damp in our current winter weather. I had to climb up and down a stepladder, so it was quite demanding. The bathroom looks fabulous now. Maybe not to anyone else, but to us householders it looks like a million dollars! I also cleaned the fan and vacuumed the floor. Still need to wipe the ceiling … Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 6, 2023 Report Share Posted July 6, 2023 @Sarah Tee that IS an achievement! I remember once I had a good day and moved all my bedroom furniture to one side of the room so I could shampoo the carpet. Well, once I got done moving it I was so worn out that I had to rest for three days in the rearranged bedroom before I could start shampooing ... Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 6, 2023 Report Share Posted July 6, 2023 I cleaned out the garage and of all days it was 92 degrees and humid. woke up later sitting on the garage floor and can't recall how i ended up there. so i went to bed. day and a life of Mike. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 7, 2023 Author Report Share Posted July 7, 2023 @Pistol, I have done things like that too. Shampooing carpet is a big job. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 7, 2023 Author Report Share Posted July 7, 2023 Oh no, @MikeO, that’s no good. I hope you are feeling better. It is winter here, which is why I can clean or do small DIY jobs here and there. In summer I sit very still under the fan. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 7, 2023 Report Share Posted July 7, 2023 @MikeO what the heck, I thought you were over this? I am so sorry, you have been doing such a good job. Dont let it slow you down, just a bump in the road. But PLEASE try to be careful, a lot of people love you. Even when you are unconscious. ( This comes from a fellow passer-outer ). Insider joke. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 11, 2023 Report Share Posted July 11, 2023 Have a big day planned today. Do laundry, take a shower, go to the eye doc, stop in at pharmacy, go food shopping, clean out the fridge (badly needed) and do dishes. Hopefully nothing bad happens! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted July 11, 2023 Report Share Posted July 11, 2023 Back from NYC! Cool and rainy like always in Maine. Feeling so much better after triple digits in NY. Last Thursday was my big day, drove from mom’s house, 1 1/2 hours, into the city, parking garage in the Hospital. Up two elevator banks, stagger with my walker into Rheumy’s office. Scare the be-dickens out of nurse with my BP when I arrived, she wanted to call a code 😂, I said, oh honey, this happens every time I stand, just give me one minute flat. Astonished nurse by lowering BP 100 mmhg after one minute flat. I asked her, “want to see it go back up?” 😈 Nurse “NO, PLEASE”! 😂 2 hour exam, GREAT NEW RHEUMY, blood draw, transferred in WC to radiology, lots of scans, transfer back. Drive back to mom’s. Exhausted! But excited, now waiting on new hip at the Hospital for Special Surgery 🤗, after 4 years of staggering around with my walker. Easy day today! Contact Ortho to schedule, CHOP day 2, talk to counselor. Watch Netflix! Have a good day all! Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 11, 2023 Report Share Posted July 11, 2023 well the only thing that happened today was the eye doc. had nothing left, dang.... it did go well but not stellar and he does acknowledge issues so more work on my part. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 12, 2023 Author Report Share Posted July 12, 2023 @MaineDoug, glad to hear it all went well. Will you have both hips done, or one? @MikeO, my fridge is in a sad state too. A shelf broke a while ago (plastic so can’t be mended despite our best efforts with glue and reinforcing). I need to find a stand-in. Maybe a wire oven rack. Or just a piece of wood, like a chopping board. That will be my small achievement for this week! Next week … the dripping tap in the kitchen. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 12, 2023 Report Share Posted July 12, 2023 @Sarah Teebeen working on cleaning the toilet bowl. I am a boy so don't know why i need to do this (Haha) i just need to do it. seems i can not get my usual cleaner that worked anymore. any suggestions? I do have hard water so seems to be the problem. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted July 13, 2023 Report Share Posted July 13, 2023 Left hip first, it’s worse. X-ray showed “severe deterioration and large areas of bone on bone. The right is not as bad, only “moderate” destruction! I’m really excited! I haven’t been able to walk without a walker and a bad limp for 5 years! I’m limited to only 50 feet at a time! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 13, 2023 Author Report Share Posted July 13, 2023 @MikeO, I am not a cleaning expert, but I use bicarb soda for the bath, sink and toilet bowl. Is it called something different in America? Proper name is sodium bicarbonate. It seems to get scale off. It’s mildly abrasive, so not suitable for all surfaces. Some people mix it with white vinegar, but I would probably spend the extra time that takes sitting on the couch 🙂 Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 13, 2023 Author Report Share Posted July 13, 2023 @MaineDoug, gosh, that will be a big deal. Did they give you a date? I have to have major bowel surgery soon-ish. Have been putting it off for years because of the dysautonomia, but can’t put it off much longer. (It’s not dangerous to wait, just uncomfortable.) Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted July 13, 2023 Report Share Posted July 13, 2023 I’ve been in the same boat, first held by pandemic, then unstable vitals and adrenal Insufficiency! Local docs wouldn’t touch me! Good thing too, I’d probably be dead. my Columbia Endocrinologist was trying to help them learn how to safely operate on me. He ended up telling me “the questions they’re asking me are scary! To be safe I’d recommend a medical center do your surgery”! So I moved my Rheumatologist and Orthopedist to the Hospital for Special Surgery in NYC. Ten hour drive but the docs are soooo much better. They deal with complicated patients like us every day! I feel reassured and safe! Can’t wait to walk again! I’m done with under qualified medical staff! I’m insisting on the best and lucky enough to have access! Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 14, 2023 Report Share Posted July 14, 2023 On 7/7/2023 at 8:02 AM, Pistol said: @MikeO what the heck, I thought you were over this? I am so sorry, you have been doing such a good job. Dont let it slow you down, just a bump in the road. But PLEASE try to be careful, a lot of people love you. Even when you are unconscious. ( This comes from a fellow passer-outer ). Insider joke. Yeah after messing around with my specialist inaction my PCP nurses jumped in and have me going in this tuesday for a second set of eyes. not sure what we will get. upside i do like sleeping Haha. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 31, 2023 Author Report Share Posted July 31, 2023 Since taking calcium-channel blockers, I’ve been able to exercise regularly, four or five evenings a week. Even though I’ve stopped the CCB for now (side effects – have to try a different one), I’m still feeling the tail end of the positive effects. And I’m finding the exercise easier each week, like a normal person!!! Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 31, 2023 Report Share Posted July 31, 2023 9 hours ago, Sarah Tee said: I’ve been able to exercise regularly, four or five evenings a week Glad to hear you are getting in some exercise. what are you doing for your work out. I heard if a roo chases one its good for the cardio Lol. Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 1, 2023 Report Share Posted August 1, 2023 On 7/31/2023 at 6:55 AM, Sarah Tee said: And I’m finding the exercise easier each week, like a normal person!!! THAT is NOT a small achievement! 👌 Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 2, 2023 Report Share Posted August 2, 2023 I got my hair cut today...boy i feel like a piece of meat Lol... Quote Link to comment Share on other sites More sharing options...
Abe Posted August 3, 2023 Report Share Posted August 3, 2023 You all are amazing. You made me feel so much better today. I usually take it pretty hard when I can't do much of anything but just lay in bed all day. I was able to stand in kitchen cooking for like 2 hours, two days ago. Thank you for teaching me that these smaller achievements are marks of progress. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.