[Pflowers]

It's been a while since I did a little galavanting ...

https://twitter.com/pfrog23/status/1387094150466711557

Those are mine but if you want the more official version ...

Virtual Tours — Oconee Hill Cemetery

Takes about 5 seconds before that virtual tour starts ...

Hope all are doing as well as possible all things considered.

I miss having the energy and mobility to do all the things I used to love to do, but ...

A car seat view ain't half bad either.

I am having a lot of post-lockdown anxiety, and it's mainly down to the fact that, unlike others, who have been waiting to go back to their lives, I don't have a life to go back to or any post lockdown plans.

I've been trying to find something good about it, but their isn't... their really isn't

what's good about someone my age

Possible trigger:

who's body is basically ****ed, and the only thing she's good at in life is losing friends?

I've been hoping my care team may help me, or at least check in with me, but they are not interested. that makes it harder

[Cocosurviving]

Many Meds and Treatments for Rare Diseases are Available at Speciality Pharmacies Instead of local “Regular Pharmacies.” Pharmaceutical Companies want to Keep Our Business.

We are Assigned Patient Support Specialists. They Follow Up, Check-In Prior to Colonial Holiday Closing, Schedule Shipping and Handle Problems We Encounter Getting Adequate & Correct Medical Treatment.

If Your Provider Decides to Change Your Speciality Meds or Treatment. It Will be Your Responsibility to Notify Your Assigned Patient Support Specialists.

You Will Be Assigned New Patient Support Specialists Each Time Your Speciality Meds or Treatment is with a Different Pharmaceutical Company.

I’ve Opted for Sending My Patient Support Specialists, Dear Jane Emails. Lol

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[Cocosurviving]

I received my first two Xolair injections (speciality monthly treatments) on Friday, April 23rd 2021.

So Far My Chronic Idiopathic Urticaria Flare Ups and Angioedema have *NOT Changed.

I’ve had an increase in my Fibromyalgia Pain. (I’m a 4:20 LICENSED Spoonie). I’ve purchased infused bath bombs, I have cannabis edibles and medical cannabis to smoke .

It seemed like every pharmaceutical medication recommended for my Fibromyalgia has serious side effects like “suicidal ideation”, “increased depression”, “increased anxiety and “agitation.”

I understand what “possible side effects” mean, it means enough people experienced those side effects to become a warning.

Immunologist - A). Has Recommended I Continue Taking Hydroxyzine Twice a Day and using Clobetasol cream
for Chronic Idiopathic Urticaria.

B)Dexamethasone for Angioedema.

I have my fingers crossed that Xolair injections will eventually put me in remission or reduce my Chronic Idiopathic Urticaria and Angioedema flare ups.

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[Pflowers]

Hurting extra bad this morning ...

Gonna do my best to make the best of it.

Hope all have a decent day today!

I generally think that giving up showers is the best thing for me in the longrun.

i amn still aching from the one I had yesterday, and they just make my mood 10 times worse as well

I guess it's seeing my body.. I hate that.

from now on if I want to get clean I'll just stand in the rain with my clothes on

I don't need to worry about my BDD, and their's enough rain to... well, probably shower daily.

I coughed so much this morning it hurt my stomach

it really hurt... it feels better now, I had some pepermint tea, but earlier I felt like

Possible trigger:

ripping the ****er out. it was painful

my back still is, but sat on a chair doing nothing all day... shouldn't be too tiring

and I lived up to it

litirally sat here doing nothing all day!

[Cocosurviving]

Saturday was nice...very busy.

I have days when I’m very social and other times I need space and solitude.

I spoke with family and friends in Tennessee. Visited my dad and his wife...plus my momma and stepdad.

I didn’t make it to a YMCA location...outside was decent tho....I walked 1.2 miles

I tried helping a neighbor...bless her heart a yellow jacket flew inside her apartment. She had a can of spray, opened the front door and it would not leave...we also have vaulted ceilings. I had a neighbor help me before with the same situation. I’ll definitely be making a trip to get spray and another broom . I broke my broom killing a spider Lol

I came across a few Spoonie running groups on Facebook which is very helpful.

The month of May has several awareness causes.

Sunday- I wrote my monthly budget out, paid bills online , updated my calendar and to-do-list.

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[~Christina]

Storms coming so Fibro is ramping up

Gentle hugs

[Pflowers]

Gentle hugs back atcha @~Christina ...

Bad weather is definitely not our pfriend!

Hope it eases off soon!

spent the day (or most of it) in severe stomach pain. this time, caused by my lack of cooking skills- it didn't agree with me, never does when I cook, so...

tonight I'm going to have takeout or at least try to eat something.

not really that hungry

my accomplishment for the day is getting dressed without falling on the floor. actually, it's one of my better pain days which is a slight relief.. yesterday especially was horrible

sstill doing **** all though. plans for tuesday: sit in a chair and watch the world.

hardly making use of my time..

[lizardlady]

My thanks to pflower for checking on me. I'm still above ground. Between side effects from my second Covid shot, then off the charts stress at work I have not been fit to be around. I've been cranky, crabby and judgmental. Haven't been posting much because supportive and helpful just weren't happening. Probably would have gotten myself in trouble for blasting someone.

Fibro and CFS symptoms have settled down to their "normal" levels.

Sorry for being a Debbie Downer. The depression beast slipped out of its cage and I've got a case of "life sucks."

Came back to add an example of what I was talking about. I have a warped sense of humor. Working with one of my kid clients last week. He was having an absolute meltdown over his failing grades. Good empathetic therapist me was trying to help him find solutions to the problem. While on the inside I was thinking "What the h e l l do you expect you stupid little git?! You haven't done a lick of work all year, now a month before school gets out you are surprised you are failing!!!!. The grade fairy is not going to magically give you straight As!!!!!

[Pflowers]

No apologies necessary @lizardlady ...

All pfeelings welcome here!

Hope the beast returns to it's cage sooner than later, & glad to hear the pflare has settled back down.

I've been struggling to eat again. well, maybe not to eat, but to be full. my quality of food (or to be more exact how I prepare it) is a serious issue- I am convinced that's why I'm not enjoying it.

struggled through another shower today, and 2 falls (one quite bad fall on tuesday morning, one less so bad on wednesday evening)

care team checked in with me yesterday, just with their usual crap... you're too damaged for us to help you, which I guess is another way of them saying well... we don't know what to do with you, so that's also not great

ah well: their goes another week of absolute **** all

[lizardlady]

Someone get some cheese to go with my whine. My knees, hips and left ankle are screaming obscenities at me today. It's arthritis, not fibro. Regardless the cause it hurts like bloody blue blazes.

[lizardlady]

Maybe it is fibro. My whole stinking body hurts today. Fibro fog made me a menace on the road. I was out working in the community today. Between the pain and fog I decided to come home. Damn this sucks!