Thanks missj,
I'm actually feeling OK about having the TEE...and I'll cross the next bridge when I get there :).

Erin,
How are you doing? Worried about you. Can you get outside today?
It was sunny here yesterday and I went outside and puttered in the yard. I know that you may not be up to that, but I also took a chair out into my yard and just sat in the sunshine (although I needed a coat because it is still just above freezing). Doing that did a world of good for my overall sense of wellbeing and it might do the same for yours.

Even if it seems too far to walk to go out through your garage door, please do try. You said in your post that you went out for breakfast, so you did manage to get out the door. Give it a shot OK? :hug::hug:

With love, Erika

I got out to breakfast yesterday, but that wiped me out. By the time I got home, all I wanted to do yesterday was sleep. My brain wouldn't let me sleep tho. I felt really shaky and weak all day. When I went upstairs to get something to eat last night, I kept feeling like I wanted to fall down. Like my legs didn't want to, or couldn't hold me up.

When I was at the restaurant with my family yesterday, all I wanted to do, other than eat breakfast, was to go home. Just too many people around me at the time. (place was packed, since it was right after a lot of people's church services). My parents keep pushing me to go places, even tho I just don't feel like going. I only went yesterday because I was hungry. Barely made it into the restaurant. Was standing there with a walker, looking at all the teenagers sitting on the bench in the lobby. None of them noticed me or my mom there (both using walkers). It was an older lady that got up and gave my mom her seat. My dad, using his cane, was about to sit down when another seat opened up. Couple of teenagers grabbed the seat before he could sit down. So he just stood there. Even after I guilt tripped the kids for being jerks.

The steroids were making me weird yesterday. It was probably better that I stayed inside and hid from the world.

A lot of what you said is a big part of the reason I don't want to go out. I know your condition is much worse than mine, Erin, but I'd rather eat at home than encounter people like the ones you described. :(

Creeps!
So sorry that you and others experience this sort of behavior when out and about. No wonder you don't want to go out Frog and Erin :(.

Generally, we don't have that happen here, although it does happen from time to time; and it does tend to involve the younger crowd when it does. Otherwise, Canadians seem to be polite and will more often than not, offer their seat, their place in line ups, and even their place in line for a table in a restaurant if there are disabled folks waiting for one.

For some reason, Wal-mart seems to be an exception to that. I've witnessed and experienced all sorts of rude behavior in that place. The most common of which is when shoppers reach over someone in a scooter to get something off of a shelf, like the person in the scooter wasn't even there. Sheesh!

With love, Erika

No matter where they are, all Wal-Marts seem to attract jerks. :icon_rolleyes:

That's why they call them Wal-Martians and one of the reasons, why I have
never been to Wal-mart in my life and never will go there.:mad:

Not in a great mood today. I have a bit of a worry in the windmills of my
mind and must shake it out. Nothing I can do, without the fear of losing/
threatening a dear friendship. Mouth zipped is best, but very hard! http://home.earthlink.net/%7Esal.pal...res/ziplip.gif

Back before I had any idea that I had MS (around 2004/2005) my mom had to have knee surgery.

I took her to Walmart one day, and we used a store wheelchair with the basket. I was pushing her around in the store. I walked away from her for a minute to grab something. Came back to get her, and someone was in front of her, pushing the wheelchair from the basket side of the chair to move her out of the way so they could get to something. They practically swung her around in a half circle.

She was so shocked by the move, that she didn't say anything. I was like "you could have asked, or waited. We still have shopping to do". Think they said something somewhat insulting about my mom's mental capacity. I can't remember at the moment, too tired to try to remember what the other person said.

Some people really make me hate humanity sometimes.


and on another note, while I was writing this. My regular doctor's office just called me. He had told me to call him today. I called this morning, but in the middle of leaving the message, I was like "Dr C told me to call him today, but I can't for the life of me remember exactly what he wanted to know. So this is me calling Dr. C back".

He wanted to know what my energy level was. It's still running on empty. And the steroids have made my brain a little fried. I told them I was still really tired, and didn't feel like the steroids had done much but cause me insomnia and make me more tired. The nurse said she'd call me back in a little bit. Wonder if he's going to throw some more prednisone at me? Kind of worried he might, but I almost think that it needs to be upped a little bit. Since I don't feel like it's doing that much for the energy boost that I think he was trying to give me.

I went to bed around 2am, which is about four hours earlier than I usually actually fall asleep. (I'm usually not actually getting into the bed till around 4am). I didn't fall asleep till around 430, and then I was awake at 9am.

hopefully the fact that I've gotten such little sleep last night, I'll manage to go to bed way early tonight. Our remodel for the bathroom and my bedroom starts tomorrow. I'm betting the contractor will be here seriously early.

I have to go take "Before" pictures, so that I can show off what's getting done to my room and the guest bath.


edit

nurse called back. Told me to finish out the taper, and see how I feel after that. I hate steroids. I really do. Hopefully I feel better eventually, as a reward for taking the stupid things.

Truly, what is it about Wal-mart that affects people like that...or does it just attract those that are like that in the first place.

Sally,
You aren't missing a thing at Wal-mart, so no need to add that to your bucket list;).

Erin,
Sorry that your Mom and you had that experience at Wal-mart, but it pretty much describes the sort of things that I've seen go on there.

Rats! I was really hoping that your doc would come up with something to help you get through this flare. Maybe getting the sleep pattern back on track like you say, will help.
Looking forward to your before and after pictures. A change of scenery in your room might also help to lift your spirits...although through the construction part, you might try holing up somewhere else in the house.

With love, Erika

Erin I agree you should move temporarily while they remodel. Remodels are usually very smelly, and the smells are of toxic things, usually. You don't need that added stress.

I have only been to Walmart once. We have no big box stores near us here, so going to Walmart is a 40 mile roundtrip, and I did it only to get plants.

As for young people being crass, the TV news was pointing out today that their role models are people like Justin Bieber. They showed a segment of him being insulting to the judge who was trying to take a deposition concerning his bodyguard attacking a photographer. He looked very surly and superior. Who else do the youngsters follow these days--just as crass as Justin Bieber?
It is so nice to meet people who are polite and helpful, isn't it? That happens too.

I talked to the contractor tonight. Told him that I've been sick, been walking wobbly and with a walker. He said he would make sure that there was room for me to get in and out of my bedroom at night.

There is no energy for me to do any moving of important stuff on my desk (unless it's my iPads, or my new/used laptop). The desk is about three inches from the wall that's getting moved. (the desk is built into the wall. We're cutting off part of the wall where it curves (edited to add some info) the wall will be straightened so that it no longer curves, and goes straight across to the wall of the hallway. Basically, I'm getting rid of the little hallway that's between me and my bathroom. My bedroom and bath become an ensuite. We're doing this because that wall, where it curves is kind of an impediment to getting a walker into the room easily). He's going to tape plastic up to the shelves and cabinets above my desk to protect everything. And he's throwing more plastic over my bed. I'm going to try to stay out of my bedroom while he's doing the destruction part of the construction.

Think he said he'll have the wall down in a couple of hours tomorrow, and might be able to start on moving the vent for the air return for the HVAC. Not sure if he'll have the wall framed tomorrow. I have to talk to him about the door. Going to make it wider than it was. I think it's a 36in doorway (think that's minimum code...maybe?) The new door will be a little wider just in case I end up with new wheeled contraptions. Altho, I'm not sure how I'll get a wheeled contraption other than a walker into my bedroom. I'm in the basement. (not sure how long basement living will be feasible. Hope this flare lets up and the walker can go be parked against the new wall)

Erin do you have any stairs to go outside tomorrow if it is a nice day. That way you can be out of the way, out of the noise, and get some fresh air. Good luck. I love new renovations.

It's supposed to rain or wintery mix tomorrow. At least that's what the weatherguy said earlier. My iPhone's weather forecast thingie says that it's supposed to be 68 degrees tomorrow. But, still might be raining. I'm inclined to believe what Siri tells me over what the local weatherguy says. They've been wrong a lot this winter.

It was 75 degrees today!!! (I did go outside, but without a walker, and I had to stay by the door. Also had to have help to get back in the house)

I had to turn the a/c on because it was 80 degrees in the house! I did turn the heat back on earlier because I hadn't heard the news updating the weather yet, and set it to 67. If it's nearly 70 degrees again tomorrow. Our house will probably get really warm again. So, I'll probably end up turning the a/c on again.

I did notice that when I turned on the a/c, I set it for 71. When I went to flip it back to heat, the room temperature was 77 degrees. It barely cooled the upstairs. Hopefully that doesn't mean the a/c is screwy again.

"Not in a great mood today. I have a bit of a worry in the windmills of my
mind and must shake it out. Nothing I can do, without the fear of losing/
threatening a dear friendship. Mouth zipped is best, but very hard!"

How are you doing today Sally?
Can you maybe let your friend know that you are "concerned"? That might open a conversation in a way that is not threatening to your relationship, but strengthens it instead.:hug:

Erin,
I hope that the weather lets you be outside for a bit today, especially if the destruction/ construction goes ahead. Hope that your A/C is OK too.
It sure does make sense to widen the door and get rid of the hallway for easier access. Will the door to the washroom also be a wide one...maybe a slider? Those work really well.

With love, Erika

Now the forecast has changed, and it's going to be 45 degrees. Argh.

I don't think I have room for a pocket door for the bathroom. The contractor is going to see if he can widen the bathroom door if he can. Not sure if it can be done.

I considered asking for a pocket door for the bedroom, but I think that would cost a bit more money than what was budgeted. Think we're just making the door several inches bigger. I still have to talk to him before he starts framing.

I better get dressed before he gets here.

I got worse last night. Maybe because I forgot to take my magnesium full quota. Maybe because I have been cheating on Swank. Or maybe because I am just older.
My left leg just wouldn't come out of spasm or twisting over and over. I was doing small pants a lot, for air. I finally got up and took a magnesium capsule at 3:30, when I really figured that part out.
Today I am giving up egg yolks at least for a while, and also the lasagna I've been fancying. Back on Swank, hope it helps.
The other concern is that I live at 6500 feet, not exactly recommended for people with Polycythemia Vera, although I've not had breathing trouble before except when I tried to chemo to cut down my platelets and red cells, which proliferate. (I took p32 twice, radiation, at Mayo, instead, I've been hoping I don't have to do it again--platelets are not up to the 800,000 level yet).
I have several diseases so it's hard to tell what's doing what but I've always got into trouble if I got too far off the Swank diet, and I have been careless lately, with all that good organic cheesy stuff at the Co-op deli! Back to bread and water.

Erin, good luck with the remodel. Please don't sleep in that room tonight. It will have fresh composite in it (building materials), unless the workman is just sawing today. Even if he's just sawing he may be sawing into composite, which is made of wood chips glued together and containing a variety of chemicals. You may not be as sensitive as I am to that stuff, but everyone is sensitive when it's "new" and "outgassing". You must avoid it at least until the smell gets less, indicating that some outgassing has taken place.
Erika, don't you agree with this, from your vantage as a health care person, and Mrs. D. too, if you are reading today?
When we bought a new house many years ago, I got sick right away and had to keep the windows open 24/7. We had the house tested, and the only thing the tester found was the formaldehye in the composite shelving. Irv (my husband) replaced everything upstairs with cedar shelving, and coated the downstairs new cabinets with Safecoat, a product which seals in the gases coming off of the material.

Oh h***, pass the cheese twists..:D:p:D

He hasn't done my room yet. He's been using a sawz-all on the bathtub upstairs. He finally got that out. He had the bathroom door closed the entire time for that, and closed the a/c vent, and turned off the whole house fan to keep the dust from wandering around.

I have a feeling he won't get to destroying my wall until tomorrow.

I have my bedroom window open, because even tho it's in the 40s outside (not snowing or raining yet) It's really warm in the house.

Kind of lucky that my bedroom window opens into the covered patio that's under the deck. (glassed-in room) So it doesn't exactly open to the actual outside. I get the cool air, and I don't have to worry about getting any rain into my room if it starts raining.

I still feel kind of crummy, and I was insomniac last night. Went to bed at 1am, didn't fall asleep till after 4am, and the contractor showed up around 9ish. I kept waking up last night too.

I'd sleep, but the contractor's sawz-all is keeping me awake. Hoping that I'll be able to sleep tonight.

edit

he's about to take my wall down. yay.

I'll try to take pictures.

Oh dear, Sally. One of those days.:D:D

Erika - :hug::hug::hug: I will say extra prayers for you.

My wall is still up. But my door is gone. That wall that is the original one I want to move probably gets knocked down tomorrow. My linen cabinet barely survived. He missed a screw and almost tore the very extremely expensive cabinet into pieces. (the screw that he missed popped off in the back.)

The linen cabinet is going to actually be in my bedroom next to my desk now. (he's going to match up the crown molding from the desk to the cabinet, and connect the two. Guess my desk gets bigger) The cabinet used to be right outside my bedroom door between my bedroom and the bathroom. The little bit of wall that it was attached to is now going to be cut off, to give me a lot more space to get into the bathroom with the walker, without making me have to make the little turn past the cabinet. So, straight shot into the bathroom. I guess I'm going to loose the spot that I was going to hang a mirror, or some pictures on that wall. But, hey! I get more room to get into the bathroom. I'll live with it.

The door in the bathroom is not going to get widened, but I found hinges that are made for doors, to help handicap people get a little extra space to get into a room. It's like an extra hinge, that allows the door to open just a bit farther. You end up with something like two extra inches of space to push a walker or wheelchair into a room. So, that kind of solves the cutting off the two inches that I wanted to on the door jamb on the other side of that doorframe.

I had him save my deadbolt lock for my bedroom door. (I have snoopy nieces) So, when he makes the new door, his door guy will make a door that's actually made for a deadbolt lock. The other door is just like a cardboardish type material (it was a nice 6 panel door) that wouldn't have held up to someone kicking in the door if someone really wanted into the room. (explains why my dog used to be able to pop the door open in the days before I put the deadbolt in)

My bedroom is actually about to get freaking huge. This isn't just moving a wall now, this is like an enlargement of my room because we're relocating that linen cabinet. (good thing the linen cabinet was an almost match to the desk. Desk cabinet doors are slightly different. Paint is the same. I think)

He discovered a leak in the shower he built three years ago for my parents in their bathroom. It's right next to the guest bathroom upstairs. Shares a wall. When he opened up the wall in the guest bath, he found a wet spot on the floor in between the two showers. There's no mold. He thinks it's a really slow leak, and might be where some water got thru the grout, or it's coming thru where the grab bar on that wall is. His tile guy is going to check it tomorrow.

I feel kind of icky today. I got what...three or four hours of sleep this morning, maybe. I didn't get much sleep the night before. I'm going to take a shower in a little bit, watch some tv. Play with a computer or an iPad, and then attempt to sleep.

Maybe the construction project is a good thing. This might force me to get on a decent sleep schedule. Might actually end up helping.

oh, also in health news. I'm still taking the b12. My hands are feeling pretty good today. They were already feeling better before the steroids, so I don't know if the b12 did that, or if both the b12 and the oral pred are working together on the hands.

my legs are killing me tho. Feet are swollen. I can barely walk thru the rooms because my legs are so tired. (bags of wet sand hanging off my legs). I think I pulled a muscle last night adding in a leg stretch exercise that I did in PT that I sort of had forgotten about. I did it too long. It's one you have to do laying down. I did the stretch while reading my iPad last night, and forgot to unstretch after a few minutes. Over did it a bit, but that muscle is so tight, that I figure if I go careful on that stretch from now on, it probably actually helped.

Maybe all the moving around that I have to do just while watching them deconstruct things and getting ready to reconstruct things will end up helping too. I need exercise. I'm so deconditioned it's not funny.

I have to go find my towels so that I can take a shower. He moved all my towels into another room when he took my linen cabinet off the wall. I need to wash my hair so I can go to bed early. (this ended up being a long post. Hope you all didn't get bored and wander off not too far into it)

Sending hugs and prayers to all going through pain or tough times. I am glad we can come here to share and get empathy from our friends. I hate it when any of us suffers but I am so thankful for all of you. :grouphug:

apple, watch out. Erin is getting a bigger desk. She is going to need new gadgets!!!

It's not making the working space of the desk any bigger. It's just relocating my linen cabinet.

and I just realized the front of my desk cabinets have completely different door fronts than the ones on the linen cabinet. (linen cabinet matches the bathroom cabinet doors) Oh well. I'm willing to live with it. If I ever sell the house, someone's going to kvetch (complain) about that. Future potential owners can deal with it. I'm not going to. Cabinet doors are expensive. The drawer pulls are different too. Oh well...

I only got about five and a half hours of sleep. Maybe even only four hours. I might be napping on the couch upstairs while they're taking the walls down in my room. (the wall I originally wanted to move, and then another bit of a wall that we decided on yesterday)

At least I slept some. Better than yesterday. Kind of wondering if being forced to get up at 730am every day for the next few weeks will help reboot my brain into sleeping at better hours.

Think I'll go take my oral prednisone a little early and eat something.

Need to Vent
 

So I started my Copaxone injections two weeks ago. The nurse that came and did my training said I needed to use a 4mm setting because I have no fat at the injection sites.

I was fine doing that except I would get this blister looking bump after the injection which I assumed was the med under the skin.

The in home nurse said that was most likely the case and as long as it appeared to absorb with in a few hours it was fine.

On Saturday I got my first sight reaction to my Friday night shot - red, hot, itching, and swollen. I called Shared Solutions 24 hour nurse hot line to ask if I should seek medical attention.

She said it was a standard site reaction and if it did not go away in 48 hours or look worse it would be fine. She was very concerned when I told her about the blister bump I usually see right after injecting the Copaxone.

She was adamant that I was not injecting deep enough and that I needed to adjust the needle setting until I did not see that blister bump. I told her repeatedly that I do not have fat at the injection sites.

So that night I tried a 6mm setting, still had a blister bump. Sunday night we tried a 8mm setting, sill had a blister bump but it was 1/8 the size - figured that was better we should stick with that.

Last night I did my abdomen with a 8mm and it obviously hit muscle judging by the fact that I felt like I was in the final stages of labor with my abdomen rolling and spasmming like crazy, not to mention the pain.

I called Shared Solutions 24 hour nurse again to verify I did in fact hit muscle.

The nurse who called back was talking to me as if English was my second language. Talking down to me as if I were a child, telling me how the drug had not been tested on intra-musclar injections and the needle is the wrong type for going into a muscle. As if I did that on purpose! Asking me why I was setting it so deep. I was finally able to get a sentence out and explain what the nurse on Saturday had told me. And again I explained that I don't have fat at the injection sites.

I asked her about the blister bump and she just kept saying "We want to minimize those injection sight reactions." The blister bump doesn't bother me and goes away after a few hours. I finally asked her point blank, "With the blister bump, am I getting the therapeutic dose into my body?"

It took three tries before she finally answered "Yes."

Then she gave me a whole run down on if you can pinch 2 inches use 8mm, 1 1/2 use 7mm, 1 inch use 6mm, 1/2 inc use 5mm or 4mm. I told her I can't pinch 1/2 inch on any site but my stomach.

I am going back to 4mm. I don't think the nurse on Saturday took me seriously when I said I had no fat at the injection sites. I recently dropped 20 lbs and am still losing, we're not sure why. I'm 5' 5" and weigh 120 lbs.

Thank you for reading the vent. My stomach is still sore today but completely tolerable.

Are you using heat and ice as directed? It helps minimize the swelling. I used to get those bumps a lot until my neuro suggested setting the autoject pen at a low setting so the med didn't get too deep. Just don't rub the site afterwards...it's a crystal and it will hurt like heck...

When I use heat and ice it seems to be worse. The ice was making the welt/blister thing much bigger but flatter. I tried the heat first and ended up with a bruise. I'm still trying to figure this out. Good to here someone else got that blister/welt thing at first.

If you can gain some weight it will help with the reactions. I was almost as thin as you in the beginning and it was much more difficult to deal with the shots. I have no problem gaining and now I have slightly too much fat. :o A little bit of fat won't hurt you, but I know there are some who cannot gain weight even if they try.

I'm definitely one of those who cannot gain easily. I only gained 25 lbs when I was pregnant and I was eating 5000-6000 calories a day.

I had gained weight for the first time in my life about a year before I started my GF diet and as I've been eating GF I'm less hungry and eat a normal 2000 calories now. My doc thinks that why I'm loosing. My usual weight is 115-120.

My hubby is trying to lose 100lbs so are diet is very stripped down and clean. Maybe I should go back to having a constant stash of cookies in my desk.

I'm glad that your mood is lifting. <3 :)

KerOpi, 5-5 at 120 pounds is a beautiful weight. But not enough fat for the injection, it seems.
I am reporting that I am MUCH better after two and a half days on Swank. This ALWAYS happens. But I forget and have to relearn.
I know that others may not get this benefit from the diet. But I mention it just in case there is someone who is like me on the board.
My eyes are better, my exhaustion is less. I slept through without a leg jerk or spasm. I am still anxious and tense and I think it is because the pcp changed my synthroid to 88 mg instead of 100, and the pill has "blue lake dye" in it. I will ask him to go back to 100 mg and skip a dose once every ten days. I am not sure that's it, but it's likely.

KerOpi - Have you tried manually injecting? I found that on the areas where I didn't have enough fat, going in at a 45 degree angle worked. I also found that I had more site reactions when I used the autoinjector and they would last a good week. It may be worth your while to give it a try.

When I was taking Copaxone, I got rid of the "auto-inflictor" after about 8 or 9 months and had my dad, a nurse, teach me how to manually inject myself. It was a lot less painful that way. Still hurt, but I didn't feel like I was harpooning myself every night.

I have three days left of the prednisone taper to go. That's one pill each a day for the next three days.

I felt better on like the second or third day of the taper, it's just as soon as it started to taper off, BOOM! Feeling worse again. It really sucks. I still don't have any energy. I want to take a shower, but I'm half tempted not to because I feel like I'm going to fall down.

still taking the b12, since it didn't seem to have hurt anything, and I didn't feel as physically sick after I started taking the b12.

I'm not that big a fan of taking the prednisone on an extended basis, because of all the funky things the prednisone can do to a person. I'm just feeling bad enough that I'm starting to wonder if a larger taper that lasts a bit longer might break whatever this flare is and allow me to build up some strength. I feel like my legs have been weak for months, and getting weaker.

I can feel where most of the problem is coming from. It's the middle of my low back. Probably around T12 (I know I have a lesion there)

just really really tired of feeling sick all the freaking time. And I can't exactly whine about it to the normal people around me, because that annoys them for some reason.

Erin do you have a shower chair and hand help shower head.

yes, I do have a shower chair and a hand held shower head. I still feel like I'm going to fall down when I'm getting in and out, and during the odd time or two that I have to stand up in the shower.

I just feel bad enough lately that I'm starting to think there's something either extremely bad going on with the MS, or there's something else going on.

Sorry that you are still dealing with a rough patch Erin.
Sure hope that things come around soon.

How are the renovations going? :hug::hug:

With love, Erika

I called my regular doctor today to ask what to do. Kind of wondering if there's a way to get whatever MSish thing is going on to heal a little bit so I can stop feeling like crap all the time.

Like if I take some oral steroids for awhile, could the steroids help things feel better so that stuff could heal some. I just don't know how much longer I can deal with feeling constantly sick.

Erin - You may have something else going on besides the MS, maybe an infection (which taking steroids won't help). One of my local MS buddies was feeling poorly. She finally went to the ER because she thought she was having a flare. Turns out, she had a bad bladder infection which caused the flare. She was in the hospital for a couple of weeks and then a week of rehab. She had no clue that she had a bladder infection. Sometimes, it's an infection somewhere else in the body that we don't realize we have. Maybe schedule an appointment with your PCP and have some blood work done to make sure all is ok and normal.

they checked for UTI's already.

I called the doctor. They called back and said that I could do some IVSM in about a month or so. I did not know you have to wait about a month after you get done with an oral taper before you can do the IVSM.

just starting to think that my MS just likes to be a jerk and make me sick all the time.

I did get an appointment with a new physiatrist. I go see that doctor later this week. Maybe he can help me figure out the weird walking stuff. I really do think the last PT that I did, the physical therapists weren't really that serious in helping my walking issues. At least the shoulder got taken care of.

But I never did think that they were taking me serious at all about the walking problems. I was telling them that I didn't feel like what I was doing was helping, and that I felt things were getting worse. I was kind of feeling like they were making fun of me sometimes because I liked to talk about a tv show that I'm currently obsessed with.

Erin,

For what it's worth, as a physical therapist who has worked with all sorts of patients and other medical practitioners, the tendency of therapists and medical practitioners is to follow the patient's lead in many respects.

When patients are seemingly more interested in something other than their condition,therapy or treatment, then conversations tend to involve what the patient is interested in, and/or something other than their therapy.
I'm not saying that it is wrong to do that from either the practitioner's or the patient's side, because I've had some wonderful and enlightening conversations as both a patient and as a practitioner, especially when talking about a particular condition or treatment for the um-teeth time seemed to be of no benefit.

Maybe when you see your new physiatrist, try to hold your focus on your therapy and ask some specific questions about how you can improve your situation if they seem distracted. If you do that, you are more likely to get a better outcome, with greater involvement from them with respect to taking you seriously, than the experience that you had with your PTs and conversations about a TV show.

I hope things go really well for you and the relationship that you build with your new physiatrist, that you get some beneficial therapy and that you feel better soon. It has been such a long haul for you.
Hang in there :hug::hug:

With love, Erika