I'm at the end of my patience tonight. Can't handle this anymore.

They better call me back tomorrow.

Oh, please hang in there Erin. Sending :hug::hug::hug:. I know times like these are hard with this stupid disease but you are strong and can make it through.

With love, Erika

Without giving too much information. If you hadn't had a certain bodily function since Saturday morning, and your leg was having more problems moving, would you consider that an emergency?

Edit

Just have to say thank goodness for milk of magnesia.

Neuro just called me back.

And did absolutely NOTHING for me.

Pretty ticked off right now.

Probably the decision of whether something is an emergency or not is best determined in consideration of what the norm is by the person affected in consultation with their medical practitioner. What you describe is not an emergency for me because these symptoms occur fairly frequently, but that may not be the case for you.

The other things worth considering are what, if anything can be done about symptoms, by whom and when to take action. Those too seem to be decisions that are personal ones for each individual and their particular circumstances.
When the ability to cope or manage symptoms on one's own, then of course relying on the help of others may be the answer. As you have pointed out so well Erin, when we do reach out to our medical practitioners for help, it isn't always forthcoming.

Left with that, the ball lands back in our court and short of seeking help elsewhere, we must try to figure out ways to help ourselves as best we can and put those things into action.
I'm glad that the Milk of Magnesia helped, so that's one thing that would be well worth putting into your bag of tricks.

My bag of tricks is so full of stuff, that I've taken to making notes on what works and what hasn't for particular symptoms; just to keep track because memory is also an issue, especially when I'm feeling at the end of my rope.

Hope that you feel better soon. :hug::hug:
With love, Erika

Oh Erin, you have my deepest sympathies for all everything you are going through. I don't know what your insurance/financial situation is, but is there any chance of perhaps getting a visiting nurse? And not to pry but is your mother taking anything or seeing anyone for her 'moods'? I'm generally not one who thinks everyone needs an antidepressant or everyone is crazy, but I'm a bit concerned over her having a fit over a magazine. Especially since that's not the first time you've mentioned her having meltdowns over seemingly little things.

I mean there are demanding and demeaning people in the world, it's just who they are, but... Gosh I just can't think of how to express this especially since my grandmother had mental health issues. Unfortunately our relationship reached a point to where I'm unable to forgive her even now after she's been passed on for over ten years. But she proved that rather than saying "what parent couldn't love their child?" That its more what child couldn't love their parent?

My mother remained blind to it all throughout our childhood, allowing her mother to care for us and watch us while she was working. The abuse we suffered, well, there's really nothing that can be done for it now. But it pretty much took my grandmother getting much worse mentally for it to all come to light, thankfully she got some help, though there's no telling how much help it was as I cut off all contact with her. And not even for the pain she caused me, but what I can't forgive is the suffering she put my mother through.

My sister is much the same as my grandmother, and from what I hear from my uncles and mother, my great-grandmother was as well. It's a family history of the same marked behavior patterns, that for my grandmother the doctors came back with bi-polar disorder as her diagnosis, whether that was true or not, I don't know. And my sister still has not sought help for her issues, so I might never know if it's the real cause.

But in any event it is quite clear that you need help, and by the sounds of your family, not just your mother and father, you are in earnest need of outside help. Someone who can help with your dad, entertain your mom, assist you if nothing else by taking some of the burden off and giving you sometime to rest without care or concern about needing to run interference or jump to do something.

If it's not something your insurance will cover or you simply can't afford, maybe a local church could help you out, even if they aren't a 'nurse' if someone outside the family was willing to come and 'visit' and maybe help out around the house a bit, or play a few rounds of bridge/poker. Just something to break the monotony of each other's exclusive company might help.

I know in my hometown our church offered such things for free, even as a kid we were often asked to volunteer to shovel walkways, rake leaves, tote trash cans out to the curb and back, older ones were asked to help out inside homes, with spring cleaning type projects, teens and adults that could drive would help the mostly mobile elderly and sick with weekly shopping. And then there was still the 'adopt' a grandparent program where we'd just go over a couple of days a week to an elderly' home, have cookies and milk, play games and whatnot.

It allowed those of us that could, give something back and I like to think really did help our rather home bound folks if only giving them a bit of distraction from staring at the same four walls day in and day out. And though my church was Catholic, I understand that the Baptist church had similar programs, as did the Methodist church, and for our church you didn't have to be a parishioner, I loved my atheist 'grandpa' he was a character.

Sorry for the length of this post, I am truly hoping that this year will be better than the last for you. And that you get so much needed help, wherever the source. At least know that there are people thinking of you, it's just a shame we're powerless to come and help out in a tangible way, and our hugs are all digital.:grouphug:

the physiatrist just canceled on me because he's sick with the flu.

At least he doesn't want to infect his patients. But, his secretary had helped me get this appointment moved up from the 21st. She just had to do the same thing to get me another appointment next week. Otherwise I'd be waiting till the 28th now.

I swear. Someone/something doesn't want me to see the doctors and try to improve anything.

I bought a Thighmaster exercise thing. Using that to try to add an exercise to some of the stuff I've been trying to do, to keep myself moving. Hoping I get some pulled muscles from that soon.

the physiatrist's secretary has called me back twice today to update me on when the doctor can see me. Now it's re-rescheduled to next tuesday. (they had a couple of cancellations)

That secretary is really really nice! She's been trying to get me in to see that doctor sooner. I like her.

Just got back from the physiatrist.

He actually listened to me!

He was wondering why I'd switched back to him. I told him that the neuro had sent me to the other guy for a second opinion, but I couldn't remember exactly why. Physical therapy or something?

I told him that the other guy didn't really listen to me. That I'd asked him several times about the knee hyperextending, and that doctor never really addressed it. The doctor today (Dr P) had me walk around a bit, and then he actually had me take my shoes off, looked at how I moved my feet. Looked at the strength in my knees, and feet.

He said that the brace that I have has to be readjusted again. He wrote out a Rx for me to tell the tech what to adjust, and that I want new shoes put on it. He explained what the adjustment will do. It's going to make my right foot lift up better, and not drop so much. When it does that, that should keep my knee from hyperextending. He said that it might make my knee bend a little too much, but that if I strengthen the knee a bit more, it'll actually help with keeping my knee strong. Big thing is, that the knee will hopefully stop hyperextending, and I might not be catching my toes on the floor as much.

Told him about the exercise program. He told me to keep up with that. Told me to keep a diary about how much I do.

The thing that I like about Dr P, is that he listened to me today. The other guy gave me the "we'll watch it" line too much. Other thing I like. Valet parking. I don't have to walk across an icy parking lot.

This is what I opted for, after being prescribed a knee brace for hyperextension. It does exactly what you're describing, Erin...keeps my foot up and prompts my knee to bend forward. It's so much better than the big, heavy honking knee brace they first tried.

I so hope you get something that you're comfy with, and it helps!