View Full Version : Anyone got any cheese to go with my whine?

11-26-2013, 12:16 AM
I'm not doing so great, and I'm not sure if I'm looking for uplifting, or misery loves company types.

I do know I just want to cry the hurt away without the looks of crazy I get from everyone in rl.

I'm having family drama pop up where I'm not feeling supported. I would go so far to say I feel like I'm being worked against. It's not about lupus, but about relationships I care deeply about. My expectations were let down, I was crazy hurt, and felt left out. Now I'm told the relationships I care so much about won't speak with me because they too are hurt.

I don't need this stress. My lupus can't handle this stress. My Sjogren's certainly can't handle all this crying. Why can't I produce the lubrication needed for my eyes, or for my mouth, but if I need to cry there are always ample enough tears to fall? Or does that supply eventually dry up as well? My eyes have been swollen and the goopy infection like crap that happens after I get upset is pretty much a constant.

My Rhuemy just sent me the bill for a nerve test, (that came back normal) my portion the insurance doesn't cover $350.00 for no answers and in in-office proceedure preformed by the guy who checks my BP and temperature each month. I've already run through this years flex spending, so I guess some of the non-necessities will be cut to pay for results that were meaningless... It'd be fine if they'd at least say something...

My hair's still falling out crazy from the MTX, so the doc told me to stop that until the hair stops falling out. My only problem with that is if the meds were affecting the hair, then they were bound to work on the lupus any time now... But now that I've stopped, am I going to have to start all over again? The doc had me stop pretty much everything. I'm taking my Cellcept 500mg 2x a day, and the DMSO up to four times daily on any joint that hurts. Oh and 800mg advil up to 5 times a day for the joint pain that my doc says is coming from the lupus attqcking the tendons around the joints.

But I'm not motivated to take care of me. I hurt emotionally right now, I hurt physically right now, the pain seems to be the constant in my life. I do understand this is a downward spiral. Logically, I know what must be done, and I have to try to do what I can for the physical me so when the emotional me gets over this pain that is temporary my body will be in a better place for it. Logic isn't the best motivation right now though.

This morning I got up out of bed and it felt like my legs were numb from the hip down. This is the first time for this, and it was weird. It felt like when you walk on a leg when it's asleep, like you are walking, but it doesn't feel like it's your own leg, but then the tingles come and you know for sure it's your leg... Well, it was like that but no tingles came, no rush of blood flow, and no reason for restriction of blood flow while sleeping. They just felt like they were numb, and I was walking, but not on my own legs. They weren't wobbly, or unstable and they did what they were told... I dunno how to better explain that one.

Anyhoo... My lupus doesn't affect my internal organs at this point, so I'm lucky, and should be more thankful than I feel right now b/c I know there are many much worse off than I am. There are many people in worse off emotional situations too... I will try to be more thankful tomorrow. Tomorrow I have my regular therapist appt, so perhaps talking will help. Tonight I needed to vent a bit, so thank you for reading, and being here, and in general just being a place of anonymous support where my tears can fall without too much judgement and a lot of understanding.

11-26-2013, 12:39 AM
i hope that venting has helped.
i also hope that you are able to talk with your therapist tommorrow.

there is no easy answer.
sometimes we need time to work itself out, and we are helpless until then.

i am thinking of you ........
and wishing better times ahead.

11-26-2013, 05:13 AM
For cheese, I prefer Havarti to go with my whine.

Believe me I know that venting helps, I've done it several timed.
You are not alone in this. My Hair is falling out, every day even without the MTX.
I also know how it feels when you're legs don't work properly.

Thank you for the chance to also whine

11-26-2013, 10:16 AM
I am so sad for you and hear your pain!!! Too bad that all the cliche quotes just don't help in times like this (this too shall pass). I feel like I have been there several times in my life too and will have them to come as well. I can commiserate if it makes you feel better to hear similar sad times... Just say the word!!

I will offer to fix one problem you are having.... Come move to Canada and let your health care financial problems go away!!! I am endlessly thankful for living in this country for that especially. I can't imagine the millions that have been spent on me in medical bills. And my daughter, too!!! My entire family would be in poverty and living in a box under a bridge I'm sure if we didn't have this type of health care system. I would love to move to the states for the weather but I just can't because of the health care!!

Anyways, that probably doesn't make you feel any better. Perhaps knowing that we currently have 2 1/2 feet of snow and had to spend Sunday digging ourselves and neighbours out may make you feel better!!!


11-26-2013, 03:34 PM
I'm always happy to share the whine (passes bottle to heather123) I like Havarti, but funny enough I don't actually drink wine :)
I did speak with my therapist, and just as I suspected, the only solution to heal the emotional pain is time...

So thank you for letting me vent, it does help. Thank you for sharing your stories too, as they also help. I'm taking the rest of the day to sleep, tonight I will get up & do some editing work... Or not... Today's going to be a scratch... If I get anything done it shall be a bonus.

Also at heather123 I love the snow & I am waiting patiently until I can move up north and away from this Florida sun/heat. I would live in Canada, (not necessarily for their health care). I've visited Quebec, Toronto, & Victoria previously. It's quite beautiful, even in the snow. We could house swap... I'll come live in your house in the winter months and you can come live in mine and be a snow bird. Of course I won't be doing any shoveling. My joints wouldn't handle it, so I'll just make sure to bring enough supplies to last me through the winter, and you'll have to have someone dig me out when you get back to your house for spring :) deal? I could hibernate well!