Wasn't Me Wednesday

[vino]

Poor Cass inthekitty, I hope today is better.

Good luck today trtlcrzy!

[lahdeedah]

I didn’t need a workout because mopping the floors is WORK. Mopping the townhouse floors will be a piece of cake compared to what I have now. At least this was the last time I should have to mop this house. That reminds me I need to get the neighbor’s cleaning lady to come by to do the move out clean.

[guster]

I hope the docs can give her something stronger. Does her pediatrician have any advice?
Hopefully this afternoon will be better, inthekitty.
@peach, feel better!

Add me to the reading train. I was doing great with the e readers, but in the last two years or so (maybe longer, maybe it since we’ve moved here) I can only do audiobooks and podcasts. I don’t have the patience to stare at a screen unless it’s for unnecessary scrolling, and I gave up on paper book a long time ago.
For those of you that like nonfiction, I just finished Malcolm Gladwell‘s latest weeks ago and really enjoyed it.

[vino]

Re: reading.  The only time I was known to read was on vacation, both month long trips to Europe I read like 6-7 books and my all inclusive trips to Cuba for a week was 2-3 books. 

One of my best memories of being in Paris is that I had met up with a friend that was travelling separately from me but we planned to be in Paris at the same time for 3/4 days before she went off to Spain and I continued to Italy.  After sight seeing all day we went back to our small boutique hotel and sat on the balcony with a bottle of red wine in the heart of Paris, she was reading a book, and she just started reading out loud.  From that night we just took turns in the evenings.  It was weirdly calming.

For the longest time I couldn't find time in my regular life and the past year I've managed to fit in quite a bit of reading and its all romance.  I love it, why fight it.  I've read The After series, 4 books and then found the Addicted series which was 10 books, I've got Nicole Williams Lost and Found series now and its ok but I think I'll read some Jojo Moyes for some summer romance.

[mwhip]

2nd shot done! If she hadn't counted down, I wouldn't even have known she did it. Im so glad this is behind me.

I enjoy reading. I used to read when I was on the elliptical for an hour each day, then another hour or so before bed. Now that I'm not doing the elliptical, I ready before bed. It helps shut my brain off from the day. I get super annoyed when H comes in and I have to put my tablet away.

[kim22]

trtlcrzy hope the braces go well today! DS1 is supposed to have his for 12-18 months and we will be coming up on 18 months next month. I only went to 1 appointment with him then covid happened so he goes in alone. Hopefully he will be getting them off soon. I think DD will be getting hers in the next year so it will be good to have 1 kid done.

[nam2013]

mamabear On 4 May in the Netherlands we commemorate victims of war, and on 5 May we celebrate the fact that we live in freedom. Freedom from German occupation during WWII, but also freedom in a broader sense, freedom to be who you are and say what you want without being judged, prosecuted, taken away or killed.

Normally we have a lot of festivities. Last year we celebrated 75 years of freedom. I remember celebrating 50 years a a young girl. Our big square was filled with old war planes and tanks and a lot of Canadian veterans where invited to celebrate with us. It was very impressive and it’s a shame last year didn’t go as planned (to say the least 😉).

[trtlcrzy]

May 5, 2021 11:27:43 GMT -6 kim22 said:

trtlcrzy hope the braces go well today! DS1 is supposed to have his for 12-18 months and we will be coming up on 18 months next month. I only went to 1 appointment with him then covid happened so he goes in alone. Hopefully he will be getting them off soon. I think DD will be getting hers in the next year so it will be good to have 1 kid done.

Thanks. Getting them put on was pretty non-eventful. My ibuprofen wore off so now my teeth are sore. I was given an estimate of 24-30 months so maybe I’ll be done before your DD.

[peachsmama]

I'm home. And my post op appointment went well. Everything is healing great and all my pain and complaints are normal. A did a great job keeping the house clean but I've been fine tuning everything and have him running the big vacuum now. Also sorted and started laundry. He's really impressed me this week with managing everything. I expected more hick ups lol.

[mwhip]

inthekitty how is cass doing tonight?

[trtlcrzy]

We had soft tacos and potato Oles, which are flat tater tots, for supper. One of the tots broke a bracket off. Can’t even go a whole day without an issue.

[peachsmama]

May 5, 2021 20:37:16 GMT -6 trtlcrzy said:

We had soft tacos and potato Oles, which are flat tater tots, for supper. One of the tots broke a bracket off. Can’t even go a whole day without an issue.

Well shit. I'm sorry!

[tgrimes]

May 5, 2021 20:37:16 GMT -6 trtlcrzy said:

We had soft tacos and potato Oles, which are flat tater tots, for supper. One of the tots broke a bracket off. Can’t even go a whole day without an issue.

Augh. No way that’s your fault!

[inthekitty]

May 5, 2021 19:09:44 GMT -6 mwhip said:

inthekitty how is cass doing tonight?

She's pretty miserable. In the afternoon she does the best and she was able to hobble around a bit. She was so bored out of her mind that I put her in an old umbrella stroller and took her for a walk. I heard back from her docs and as far as meds they just said to alternate acetaminophen and motrin. 🤨 Another note including a consultation from a dermatologist but it wasn't really helpful. Everyone at Kaiser seems to be perplexed.

wedding I forgot to reply to you yesterday. No offense taken at dog remarks. 😅 The docs thought that too and asked about ticks. We haven't been in the woods though so not very likely.

[inthekitty]

This is a graph showing Cass' SED rate on Monday and Tuesday. I'm guessing it was even higher today.

"Sed rate, or erythrocyte sedimentation rate (ESR), is a blood test that can reveal inflammatory activity in your body."

Each bar interval is 5. Normal range is about 5. Cass was at 27 first blood draw and 45 the next.

The rash is most prominent on her feet but went back to looking more like dots than splotches.

[mwhip]

inthekitty how awful. The inflammation markers would worry me more than the rash, but that is just because of Evies diagnosis. I would stay on them about the pain...there has to be more they can offer to help her achieve normal mobility.


I feel so bad for her and you guys...I understand how hard it is to see your kid go from totally normal to whoa, something isn't right here.

[tgrimes]

inthekitty I'm sorry they wouldn't give her any other pain meds.

[chrisy01]

May 5, 2021 20:37:16 GMT -6 trtlcrzy said:

We had soft tacos and potato Oles, which are flat tater tots, for supper. One of the tots broke a bracket off. Can’t even go a whole day without an issue.

You went to taco John’s. I wish they were out here sometimes.

Sorry about the brackets.

[chrisy01]

Poor Cass [mention]inthekitty [/mention]

[inthekitty]

mwhip yes, we're definitely more concerned about the inflammation. It's definitely causing more issues than the rash. I'm so frustrated by the situation and don't know why they can't give her pain killers for a couple of days. Ok, so it's going to run it's course in a few more days--can't we make her not in dire pain during that time? She was up 3 times screaming in the middle of the night. 😞

Not to mention she's a big kid and weighs 65 lbs. It's not easy carrying her around. I've got a large frame and a lot of muscle mass, if I didn't or if she were much bigger, I physically don't even know how I'd keep up.

[klong11]

inthekitty, have you contacted her pediatrician or is the urgent care the only option?

[inthekitty]

May 6, 2021 8:06:30 GMT -6 klong11 said:

inthekitty, have you contacted her pediatrician or is the urgent care the only option?

We go to Kaiser so it's all in the same building. I sent a message to her care team yesterday. First we got a message back from someone on her PCM'S team because her PCM was not in the office about the motrin/Tylenol combo. Later her PCM wrote (I don't know if he checks the portal sometimes on days off) and he included the info of the consultation from the dermatologist (apparently she's their medical mystery and they've consulted with all sorts of specialists there).

I don’t really want to go back to UC because it'd be another long ordeal. Even if the line wasn't long I know they'd want to do a ton of labs again and wait for those results. That was one of the reasons she was there 4 hours the second time, she couldn't pee and they insisted on urine.

I'm going to contact her PCM team again today. I get it, pain meds are addicting, but we don't want a Costco bottle of them, just something to get her through the next couple of days. They have access to mine and MH's records too since we all go there so they can clearly see we're not med seekers.

[mwhip]

May 6, 2021 8:13:02 GMT -6 inthekitty said:

May 6, 2021 8:06:30 GMT -6 klong11 said:

inthekitty, have you contacted her pediatrician or is the urgent care the only option?

We go to Kaiser so it's all in the same building. I sent a message to her care team yesterday. First we got a message back from someone on her PAM'S team because her PCM was not in the office about the motrin/Tylenol combo. Later her PCM wrote (I don't know if he checks the portal sometimes on days off) and he included the info of the consultation from the dermatologist (apparently she's their medical mystery and they've consulted with all sorts of specialists there).

I don’t really want to go back to UC because it'd be another long ordeal. Even if the line wasn't long I know they'd want to do a ton of labs again and wait for those results. That was one of the reasons she was there 4 hours the second time, she couldn't pee and they insisted on urine.

I'm going to contact her PCM team again today. I get it, pain meds are addicting, but we don't want a Costco bottle of them, just something to get her through the next couple of days. They have access to mine and MH's records too since we all go there so they can clearly see we're not med seekers.

I want to send you some of the Endomethacin we have since Evie quit taking it! Its specifically for arthritic joint pain, which seems like it would help her, short term, and non addicting. You may have said, but are the specialists seeing her pediatric specific or just general?

Did she wake up any better this morning?

[inthekitty]

mwhip she's seen mostly general UC docs but since they're all in the same building they pulled a pedi in to see her Tuesday.

She's sleeping now. She tends to have rough mornings though and woke screaming the past 2 mornings because she couldn't walk to the bathroom.

[vino]

oh my goodness inthekitty, that poor girl. My heart just breaks when you describe what she's going though. I wish we could do something for her.

[nam2013]

inthekitty that sounds so horrible... I’m so sorry 😞.

[trtlcrzy]

May 6, 2021 7:54:20 GMT -6 chrisy01 said:

May 5, 2021 20:37:16 GMT -6 trtlcrzy said:

We had soft tacos and potato Oles, which are flat tater tots, for supper. One of the tots broke a bracket off. Can’t even go a whole day without an issue.

You went to taco John’s. I wish they were out here sometimes.

Sorry about the brackets.

Sure did! It’s my favorite Mexican fast food restaurant.