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Author Topic: Gotta love being Chronically ill, right?  (Read 460 times)

baduhmtisss

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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.
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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.
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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.
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Re: Gotta love being Chronically ill, right?
« Reply #3 on: November 26, 2018, 08:50:24 pm »
We all have our own challenges, and we all need to rant sometimes.

I agree with you, I think we all have our own Hell to go through in our lives, and that it's meaningless to play the game of "Who suffered the most"

I have my own challenges myself.  I have juvenile rheumatoid arthritis, everywhere except for my back and hip. I was officially diagnosed at age 4, but I had symptoms earlier and my mother went to numerous doctors about them. It stopped being active in my teens, but became active again a few years later during my second year of College.

It’s been hard for me, the pain, the limitation, but most of that I’m always exhausted, tired, I have no energy for anything, and as I’ve aged, I’m age 42, it’s worse. I’ve lost a lot of my strength, and there are many things I could lift or use, and I can barely do it now. I can barely use zippers, and I had to buy a tool for that at Medicus. Also, one of the medications my doctor gave me damaged my sight, my periphal vision, the damage is not permanent because it was found quick enough to stop taking the medication, but it will take years for my sight to fully recover.

I get help now, someone comes every 2 weeks to do all of my choires, so that is really nice and I’m grateful for it.  I don't pay for it, the government pays for it, the joy of living in Canada with free health care.

If your rheumatoid arthritis is not under control, it can target other areas of the body, like the eyes, lungs, etc., and it seems yours is not under control, it will take time for doctors to find the right combination of medications to control it.  I've never been in a wheelchair, which I'm grateful for, but I've developed arthosis in my knees which makes walking more difficult.  My hands are the ones that has suffered the most, and I loved to do cross-stitch, but it's something I can't do anymore.  I'm getting old.
« Last Edit: November 26, 2018, 08:54:05 pm by Nothingness »

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Re: Gotta love being Chronically ill, right?
« Reply #4 on: November 28, 2018, 08:07:43 am »
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.

I and my family are sending you the best good vibes for exactly this as we can. We are looking for the same, especially the "No more surprises" bit.

So much love and hugs from myself, the boyfriend (who understands how hard chronic illness is and he specifically said to tell you be good to yourself) and the animals.

If you want a smile, I skimmed the info under your name and had to remind myself that you living in Texas does NOT mean you live on our dog and that Texas is indeed a state in the South Place as well as the furry idiot doing a Carpet Shark imitation on my living room floor right now. I then went and made more tea, because it is too early to brain without assistance :P

If you ever want cute dog/cat pictures to cheer you up, or just need to chat with someone in your age group that will never suggest rock climbing feel free to hit me up in PM or on the Discord.

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