It's just that the car is kind of a sore point to me. I'm not able to drive it right now. I had to give my old car away because it was a stick shift, and the person I gave it to never thanked me for giving them my car. I thanked my dad a lot for helping me get a new one. But, the person that I gave my old car to, couldn't be bothered? That's really kind of offended me that they didn't thank me for giving them a $7k car.

Then I can't drive this one. It's sitting right there. I can look at it, and sit in it if I want to (I don't. That would be depressing) but I can't drive it.

I used to be independent and able to hop into my car whenever I wanted to. Now I can't, and I have to look at the car every day, knowing I can't drive it. It just kind of hurts in a way that is hard to explain. (I've been stuck in my house for over a month, not able to get out unless my dad drives me somewhere. I'm probably a bit cabin-fevered and going out of my mind at the moment with boredom). I know I sound like a word that starts with the second letter of the alphabet, but I'm just kind of frustrated at everything that's gone on this year.

Even if my feet and legs weren't being all MS-ish at the moment, I probably still wouldn't be able to drive, since I screwed up my shoulder.

Just tired of being stuck at home all the time. I want to go out and do stuff without my parents.

Yeah, no doubt that your current situation is not only frustrating, but sounds painful too. Sorry about your shoulder.
It really does get hard to cope when it seems that everything has gone to pot at once...and then stays there.

Can you get out with a friend instead of your parents Erin? Or maybe have them drop you off at a mall or something so that you can be away from them for a while in a different environment.
Even if you just go to sit and people watch, I find that at this time of year, the s are pretty good. Better than TV in most cases.

With love, Erika

Can't really do stuff with my friends. They have actual lives and jobs and kids. (I say "they". I really only have one friend that has a kid. She's busy with her kid, and her job, and she's going to school).

I have a boyfriend, but I think he's been having a bad year. His job is overworking him, and he's got to deal with not having a lot of money. He lives in another city about 50miles from me, so he can't get here that often. I haven't been pressuring him to come here and entertain me, because I haven't felt all that great this year. I'd be a boring date. I'm a little embarrassed at how bad I feel, and I think my body has been changing because of the flare. Getting a little (ok, a lot) deconditioned. Things I could do several months ago are probably starting to get beyond me now.

I do feel a little bit like everyone has abandoned me, but I think that's probably just me feeling sorry for myself. But when you go week after week, and it turns into months where you don't talk to anyone, that gets really depressing. I got my hair cut about a month ago. While I was there, there was a guy there getting his hair cut. I ended up having a really great discussion about politics and what's going on with the world. This guy didn't treat me like I'm an idiot, and I was able to keep up with the conversation. It was great. I need people to talk to like that some more.

I know some people (family) look at me like I'm faking and lazy. That really bothers me. I don't see how a person can fake it. I was around a couple of family members the other day, and when I was talking to my dad with them around, they didn't do the greatest job of containing their facial expressions. Plus, the two of them kept texting/instant messaging each other on their phones. I could hear the chimes of the phones. Then I'd see one of them look at me, and they'd both share an eyeroll or scowl or something. I wasn't imagining that. My dad noticed it too.

I told my dad earlier this summer that I thought that we needed to build a ramp to get out our front door. Stupidly I did this in front of those relatives. They immediately started telling me I was crazy, and didn't need to do that. They got really nasty about it. Got bad enough that I just got up and left the room. It's annoying. I can feel all this weird stuff going on in my body, and can make the deduction about what's going to happen. I'd like to have things in place for when I need it. I didn't like those relatives dismissing me when I was trying to tell my dad what I need. (I think the ramp would be helpful for my parents too) The relatives that were yelling at me are able bodied, and a bit...narcissistic about things. I didn't like them telling me that I didn't need a ramp.

all of that is frustrating.

Gee, that is frustrating to have family members pass such judgments and to do it in such a way deserves the getting up and leaving their company.

In my world, texting while in the presence of others during a visiting situation is beyond rude and deserves that being brought to their attention. Mind you, I may be old fashioned in that respect, as that behavior seems to have become acceptable these days. Thus I said, in my world.

I have a couple of signs at my office that depict a cell phone with a red circle around it and a line running through the middle of it; indicating that use of such is not permitted in the clinic. One is on the entrance door and another is in the waiting area. There is another sign on my treatment session door that explicitly says, "Please turn off cell phones/ring tones." Yet, there are still those who do not get the message.
Honestly...very few people are needing to have them on during all hours. Even most doctors (when they are not on call), respect the signs when they come to the office.

I find it disheartening to hear them go off, because I know that the individual is then distracted. If they choose to respond to it, I remind them why we have made the request and then I leave the room while they engage the call.
Hey, its their $60.00 for every half hour of my time, and if they want to spend it chatting on the phone, that is their choice.


Although I wouldn't wish what we go through on anyone, it is sometimes very interesting to observe how some 'able-bodied' individuals deal with and complain about a temporary health issue, isn't it? Especially the ones who seem to have little understanding or compassion when it comes to others.

Erin,
Do you skype? Maybe you could skype with your boyfriend and/or even your friend. Sometimes that is easier than actually being together, and it could be beneficial to everyone.

I do understand the being cooped up for weeks on end as being rough. After a while (days not weeks for me), I feel like some of my brain cells, the ones that have to do with consciousness and thinking, have passed on .
Watching TED talks and doing some brain stimulation stuff like Lumosity on the computer helps, but sometimes the motivation and/or ability to that is lacking.
When I can't go out much, I come here (Notice that I've been here a lot lately?), send a few emails to people that I haven't chatted with in a while, take courses on line, design my next year's garden...anything to engage in something besides navel gazing and self focus. It helps. It really does.

Hope that you find an outlet or two that works for you.

With love, Erika

yeah, I have Skype. I talked with the boyfriend on friday on Skype. Probably the only way I get to see him now...and his heat was kind of not working that night, so most of the time I talked to him, he was wearing a jacket with the hood up, and one of those ski mask hats that covers half the face. Pretty sure I could hear his teeth chattering. He just can't get online that often.

Just so frustrated with my health issues. Now I apparently have another. Without being too TMI here. I haven't done a certain thing since thursday. I took medicine for it, nothing happened. So, I took another medication (that's not taken orally) today, and still...nothing has happened. Getting really worried, and I really do not want to have that conversation with my doctor. My life just gets worse and worse.

Erin, really maddening about the car! It is so important to you. Hand controls will be great when you get them.
Baclofen, my reaction to one day's pills was to walk into a wall as if it was not even there.
Bull-in-china-closet. I could tell I would walk into other walls, after that, so I had to quit it. Tried Zanaflex then, made me wet-noodle weak. Magnesium was prescribed by Scripps Clinic neuro, problem improved dramatically. I wonder why magnesium doesn't help others on this forum? Or at least not many. It isn't a total cure for me any more. One thing I have to do for leg spasm is to rub the knots out. This takes a lot of effort and probably burns a lot of calories and strengthens my arms and hands. I only do it when I'm so desperate the adrenaline enables my weak arms to do it. But it does help. I have to keep rubbing for a long time--maybe twenty minutes? I don't time it, of course.
My other disease Polycythemia Vera made my itch exceedingly bad last night. Time to pray and weep. I must have got some help because I dozed off. Itch is a very common problem with PV, and it is much worse than you may imagine. So I was rubbing out the knots in my legs between compulsive scratching. Finally dragged myself up to put very thick cream on back and sides and abdomen to stop the itch. I use Badger Balm.

hey, that TMI problem that wasn't happening, just happened. yay. Now I feel a little better. I was about to panic.


I really cannot wait to get the hand controls for my car. I'm going to call the physiatrist's office tomorrow to find out where the classes are for learning to drive with the hand controls. and see if I have to have the car converted first, or if they have a training model of a car for me to learn on. I get the feeling I have to have the conversion done first.

Then once I can drive with the controls, I can take the car to the body shop to get the damage my dad did to the car fixed.

I managed to get one of those family members to help me today with changing lightbulbs in my bathroom when they stopped over today. I don't have to wash my hair in the dark anymore. It's amazing how stressful it can be to not be able to change a lightbulb by yourself.

my shoulder pain started to kick up again this morning tho. I hope that I won't need to have surgery on it. I go to an orthopedist later this week to have it checked out and see if I'm getting shoulder surgery for Christmas, or if I'm getting more PT instead. I'm just so exhausted from this past year being so fantastically crappy. Hurting my shoulder is just another annoyance to have to deal with. I wish my health would stop annoying me so much.

Sal, TMI here…I can sit on the toilet for 15 minutes and my bladder sphincter opens and shuts, opens and shuts…then I get in the shower and I make a shower I always think I'm finished, but it's never true...

I think the sphincter muscle is spasming; my neuro is really pushing me to go to a good urologist and get botox injections to stop the incontinence/off and on going. He feels it works for about 6 months and then I can get off of the med that is supposed to help incontinence, which dries out all of the mucous membranes. He suggested that that might be the reason I'm having such awful dental problems-dry mouth.

Erin, sorry your dad broke your car

I like Baby Bel cheese with my cabernet, thank you very much

I think my rear end is still broken (no, I'm not talking about the car)

Really do not want to have that conversation with my doctor...or my parents, since they're the ones paying my medical bills at the moment (and driving me around until I get the hand controls).

The difficulty that I'm still having is really disturbing. Part of the reason I'm afraid to go anywhere.

I'm just tired of feeling like carp all the time. I feel like some sort of autoimmune freak. I'm tired of swollen, painful body parts. I'm tired of getting so fatigued just taking a shower. I'm tired of doctors, blood tests, hospital visits, more medications, etc. This past month, I have taken a vacation from all doctors. I needed to do that because I honestly had at least one dr. appt a week for a while there. I see 7 specialists now and my PCP. It just gets to be too much.

I'm tired of having to pace myself and am terrible at it anyway. Once I start something I push until I have either finished it or my legs start to collapse. I try my best to pace myself but it's difficult to do sometimes. I just want to accomplish something with my day.

Passing the whine and cheese . . .