collapse
2018 Donation Drive

It's time for our annual Server Donation Drive! We need to raise about $650 ($200 less than last year) to keep The Cauldron's server online for another year. Please help! Either hit that Paypal button to the right and make a one-time donation in any amount or set up a monthly Bronze, Silver or Gold Donor subscription. You can find more info in this message!

Donations as of 21 Sept 2018: $694.52 donated. That's $94.52 more than needed to reach our minimum goal!


We've gone noticeably over our minimum for the first time in 5 years. Could we make $750 by the end of the drive on 30 September? It would be wonderful if we could, but the pressure is off thanks to our generous donors!


* "Unable to verify referring url. Please go back and try again" Problem Logging In?

If you get an "Unable to verify referring url. Please go back and try again" error when you try to log in, you need to be sure you are accessing the board with a url that starts with "https://ecauldron.com".  If it starts with https://www.ecauldron.com" (or "http://www.ecauldron.com") you will get this error because "www.ecauldron.com" is not technically the same website as "ecauldron.com". Moving to the more secure "https" means it is more picky about such things.

Author Topic: Gotta love being Chronically ill, right?  (Read 298 times)

baduhmtisss

  • Sr. Master Member
  • *******
  • Join Date: Sep 2013
  • Location: Texas
  • Posts: 514
  • Attack: 100
    Defense: 100
    Attack Member
  • Country: us
  • Total likes: 2
    • View Profile
  • Religion: Gaelic Polytheism
  • Preferred Pronouns: She/Her
Gotta love being Chronically ill, right?
« on: July 07, 2018, 11:15:27 pm »
I'm not going to lie; I just kind of want to rant a bit.

I've not been on here a while, but I've made a few posts in the last two weeks or so. I've decided to come back to the Cauldron because my spiritual life is somewhat doing a good 180 degrees after a few years and I'd like to reconnect with the community.

The reason I've not been on is that I've had major surgery (chest reduction), and then got diagnosed with Fibromyalgia. I started treatment for that with my Rheumatologist. It worked for a while.

Until they figured out I had Rheumatoid Arthritis in all my joints on top of that. They kept thinking it was the fibro. It wasn't.

My life has kind of gone downhill from there on the 'I'm able to do x' front. Now its more like, "Well... I might be able to do that today. I don't really know." I started having to use a cane, and about 4 braces. I wake up to my shoulders almost entirely out of place, and every muscle in my body aching like I ran a marathon and then played contact football.

I'm 22, y'all.

I have a great job, but its intermittent at best and I really need to have regular work for health-related bills and service dog training. Oh, yeah. I've decided to train my service dog.

It's a two-year process. My hands don't work well, and half the time I can't get out of bed without help. So I figure in two years she'll be extremely helpful when I'm attempting to live on my own.

I've also got lung issues, and they don't quite know why. It could be the RA destroying the connective tissues of my lungs, or it's something else. I've got my fingers crossed for regular old Asthma. More testing to be done next week.

I guess I'm just hoping for things to even out a bit. No more surprises. No more guessing. I'd like my injections to work alright and the pain to even out. I'd like to gain some strength back, and maybe some sense of equilibrium with my life.

Who knows, maybe this new direction I'm headed down will help with that. For now, at least somebody besides my family members knows things kind of suck right now. It's hard to connect to people face-to-face at my age. Everybody wants to rock climb or do some other extremely physical activity that I can't do, etc etc.
Gaelic Polytheist | Parrot Mom | Disaster Reservist

Jenett

  • Moderator
  • *****
  • Join Date: Jun 2011
  • Location: Boston, MA
  • Posts: 2801
  • Attack: 100
    Defense: 100
    Attack Member
  • Country: us
  • Total likes: 346
    • View Profile
    • Seeking: First steps on a path
  • Religion: Initiatory religious witchcraft
  • Preferred Pronouns: she/her
Re: Gotta love being Chronically ill, right?
« Reply #1 on: July 09, 2018, 03:36:09 pm »
I'm not going to lie; I just kind of want to rant a bit.

This folder is entirely here for that ranting.

Quote
I wake up to my shoulders almost entirely out of place, and every muscle in my body aching like I ran a marathon and then played contact football.

This description makes me wonder if you've been evaluated for Ehler-Danos Syndrome (which is often misdiagnosed as fibro or RA initially in a lot of people. The shoulders entirely out of place bit, specifically. I know a couple of people with it, and it's often way underdiagnosed. It can also cause lung issues - basically, it's issues with connective tissue in general) 

Quote
Who knows, maybe this new direction I'm headed down will help with that. For now, at least somebody besides my family members knows things kind of suck right now. It's hard to connect to people face-to-face at my age. Everybody wants to rock climb or do some other extremely physical activity that I can't do, etc etc.

It is hard. I have a hard limit on how much stuff I go out and do (one thing during the week outside of work and necessary-to-health swimming at the gym, and up to one thing on the weekend). I've been pushing that the last few months because I'm doing allergy shots (which involve a weekly appointment) and I'm still feeling it badly.

The good news is that I have friends who understand (and have, um, over time, dropped the not-friends who don't) and I've got my life set up so that stuff works for me as well as it's going to.

Moving back to a major metro area helped a lot, after living in rural Maine for several years. Now I'm back where there's great medical care options, hot and cold running delivery food and groceries, and ready access to things like Lyft. Even though I don't use some of that often, having it available as an option helps me manage going and doing things that are on the edge of my ability to cope, because I have a way out if I run out of stamina or spoons.

Having a job that suits my interests and my physical limits is also huge (and it's amazing to have a library job where if I'm having a bad body day, I can call in sick and not feel I'm messing up everyone else's day with desk coverage. I actually call in sick less than I used to, because the actual job hits fewer of the things I find really challenging. So it's worth some figuring out what the right work environment is for you and aiming for it.)

I'll add one other thing that's some of the best money I spend, which is that I have a cleaning service come in once a month. They do all the cleaning I really struggle with (positional change makes my lungs extra cranky, so stuff like cleaning the tub or mopping floors takes me about 8 times longer than it should and requires lots of breaks). With that once a month visit, I can keep on top of the rest of it much more easily, and I can do other things on my weekend than stare at things I should be cleaning and can't manage to.
Seek Knowledge, Find Wisdom: Research help on esoteric and eclectic topics (consulting and other services)

Seeking: first steps on a Pagan path (advice for seekers and people new to Paganism)

Aster Breo

Re: Gotta love being Chronically ill, right?
« Reply #2 on: July 11, 2018, 01:13:14 am »
I'm not going to lie; I just kind of want to rant a bit.

As Jenett said, feel free to rant here as much as you want.  Trust me, we all get it.

In my case, I've had severe chronic migraine since childhood, which was exacerbated about 10 years ago when I fell down a flight of stairs and sustained a traumatic brain injury.  After that, I had to relearn how to read and write.

We all have our own challenges, and we all need to rant sometimes.
"The status is not quo."  ~ Dr. Horrible
[/B]

Tags:
 

Related Topics

  Subject / Started by Replies Last post
4 Replies
835 Views
Last post July 12, 2012, 01:28:32 pm
by Waldhexe
5 Replies
1226 Views
Last post March 25, 2013, 02:00:45 am
by Dark Waters
22 Replies
958 Views
Last post May 16, 2013, 10:53:37 am
by yewberry
16 Replies
1460 Views
Last post March 21, 2014, 03:07:39 pm
by Allaya
2 Replies
811 Views
Last post August 24, 2014, 07:24:18 pm
by missgraceless

Special Interest Group

Warning: You are currently in a Special Interest Group on the message board with special rules and focused discussions.

* Who's Online

  • Dot Guests: 19
  • Dot Hidden: 0
  • Dot Users: 1
  • Dot Users Online:

* Please Donate!

The Cauldron's server is expensive and requires monthly payments. Please become a Bronze, Silver or Gold Donor if you can. Donations are needed every month. Without member support, we can't afford the server.

* In Memoriam

Chavi (2006)
Elspeth (2010)
Marilyn (2013)

* Cauldron Staff

Co-Hosts:
LyricFox & Randall

Message Board Staff
Board Coordinator:
Sunflower

Assistant Board Coordinator:
Aster Breo

Board Staff:
Allaya, Chatelaine, HarpingHawke, Jenett, Morag, rocquelaire, Sefiru, Tana

Discord Chat Staff
Chat Coordinator:
Morag

Reserve Staff:
Aisling, Bob, Catja, Fausta, Sperran, Steve

Cauldron Council:
Emma-Eldritch, Everfool, Jubes, Kelly, Koi, Melamphoros, Ocelot, Phouka, Sashapablo, Star

Cauldron Assistants
[Non-Staff Positions]

Site Assistants
[Non-Staff Positions]
Webmaster:
Randall