Office of Civil Rights. Not positive its the correct place to file.

Just know they do things with the disabled. And laws.

Donna :hug::grouphug:

The kit I ordered is for traditional e-cigarettes. It has 2 batteries, 10 menthol cartridges, a wall charger, and a USB charger. You screw the disposable cartridges (that look like the filter on a regular butt) which contain the nicotine and flavoring into the rechargeable battery, which looks like the rest of a cigarette.

I've cheated and had a couple of my husband's cigarettes, but I'm not smoking 1 1/2 packs a day, so I'd say I'm doing pretty well! :)

I sent the asst. property manager a very politely worded "I mean business" email about the parking sign Thursday morning. She replied pretty quickly that the sign would be in the next day, and it was!!!
Part of me would have liked the opportunity to nail them to the wall because of all the **** they have pulled, but I got what I needed, and that's all that matters. I'm happy :)

I'm more tired than normal. I was only awake for about 8 hours yesterday. I'm having a little more trouble with my gait and balance, but I don't know yet if it's something new or if it's happening because I'm not feeling well for another reason and it's making things worse. I'll have to wait to figure that out.

I've been up for 2 hours and I'm ready for bed again…
UGH! WTF is going on?!
Maybe I will get in the shower and see if that helps.
I don't want to lose another day!!!

I am sorry kay that you are experiencing more symptoms.
let us know how we can help you.
(((((HUGS))))
bizi

Thank you Bizi. I think just listening helps. I don't like to get into too much detail about MS or explain a lot. Something's going on, but the changes are fairly mild at this point, and I don't know what to make of them yet.

I took a shower yesterday and was able to limit myself to a 3 hour nap, so I think I won the day. Aside from cooking (and we ordered out last night), I've gotten absolutely nothing done all weekend. I was up around 5:30 this morning, so I'm sure I have a long nap somewhere in the not too distant future.

No football today… The Pats are playing Monday Night Football, which starts at 8:30pm. There's pretty much zero chance I'll get through halftime. Maybe I'll DVR it.

We're supposed to get 3-5" of snow tonight, and it's supposed to turn to rain tomorrow morning. I'll have to go out to clean off my car and move it whenever they send the plow truck, and I'm not looking forward to it.

The snow is very pretty this morning, untouched, still pure white…

It will warm up and turn to rain soon, and the skies should be clear by noon. There's a good chance the ground will be slushy vs. icy by the time the plow trucks come and I have to go outside (whenever that may be). I usually have to wait FOREVER until they clear the spaces by my building… so I'll just drive through Dunkin' Donuts and hope that kills enough time.

I think a lot of places woke up to snow. It is balmy here this morning 64 with chances of rain.
I hope you have a nice day kay and be safe out doors ok?
(((((HUGS and Love ))))))
bizi

It snowed here in Indiana on Saturday and Sunday.

Some area's of the state are closed for schools and some businesses
today. South Bend must have gotten a lot. They are closed in
the schools today.

Many of our schools went on 2 hour delay in my area.

Donna :hug::grouphug:

I had not been out of my apartment since I started experiencing the new MS symptoms, so I didn't exactly know what I was dealing with until I went out to clean off my car yesterday morning. I am clearly really favoring my right side. I'm a bit of a mess right now.

Since it's not a problem that can be cured by rest, and the roads were clear, I decided I would run some errands while I was out as long as the parking lots were clean. I didn't have much to do, so I took my time, and got it done.

I will probably end up making some kind of adjustments that will make it easier to walk. That's what usually happens. I have a preexisting appointment with my neurologist on the 21st.

I'm going to get started on my Christmas cards today. My hands are weak and I have a slight tremor, so they'll take me a long time. I wish they gave you more extra envelopes…

Good luck with your card writing.
yes take your time.
sorry for your new MS symptoms. Maybe it is time for better meds?
(((((HUGS)))))
bizi

I don't take any meds to treat MS or its symptoms, although I have in the past. That's something that's not going to change at this point. I would consider going back to PT if I'm not compensating well enough for the gait changes by the time I see my neuro.

I had a really hard time with the Christmas cards. I have OCD and am very particular about the presentation of things like that, but after a couple of breaks didn't improve my penmanship, I let it go. Everyone on my list knows I have MS, and I'm sure they'll understand why their cards aren't addressed perfectly. I don't do a lot of writing, so my hands hurt.
I'm still waiting for two addresses from my aunt, and will have my husband sign a couple of cards this evening because I'll have my MIL's Bday card by then. I hope to mail them all tomorrow.

I have an appointment with my pdoc at 8:30am! :eek:
I'm always up early, but I like to veg for a while before I go out. I have to straighten out my scripts with her because CVS made a mess of things. Right now I'm stable and have no complaints. There's a strong possibility I may have issues down the road, but I'm trying to stay positive and hope some heaping doses of denial will help.

By now you are will be having your appointment with your pdoc,
hope it goes ok and that they can fix your scripts.
Well at least you have options for meds if you want them in the future....
I thought you were on them already sorry.
How did you feel when you were on them before?
love you
bizi

I wrote down what I did and didn't have for scripts before going to my pdoc appointment, so we got all of that straightened out. If something ends up going awry, it will be okay because she's pretty good about getting refills to the pharmacy when I need them.

I've taken two different disease modifying drugs (drugs that are intended to reduce the number and severity of relapses), but they didn't work because my main problem is with progression vs. relapse so I see no point in putting any of that **** in my body anymore, and have no plans to do so in the future.

I have decided not to take any meds to treat my MS symptoms either because I'm on 9 other meds right now. Treating my BP is my main priority. It is hard enough trying to get/keep me stable, and I don't want any other drugs to make that more of a challenge. I also know that the combination of the meds I already take, and the meds to treat my MS symptoms would totally zombify me. I have enough cognitive challenges already and I sleep enough of my life away, so I'll just suck it up until I absolutely can't anymore.

I'm sorry if that comes off angry. I'm not angry at you. I'm just going to be a little angry for a little while. I've been dealt a bad hand, but these are my choices, and that's why I made them.

You have every right to be angry.
You did not ask for MS.
I think you are brave in the way you struggle to live your life.
(((((HUGS and love)))))
bizi

Thursday is my day to play the lottery and to get a coffee at the Dunkin's in the convenience store. I also had to buy stamps and mail my Christmas cards, and planned on going grocery shopping. It was supposed to be 26 out, but it was really windy and there were 45+mph gusts, and I was being blown about like a paper doll, so I took a pass on the food shopping.

It's 1 degree out right now, and the "feels like" temp is -14. But it's supposed to get up to 18 later, and the wind chill advisory is only until 9am. My husband doesn't want me to go out today because it will be too cold, but I don't want to do food shopping in the snow tomorrow. I guess I will wait to see how I feel later and decide what is best for me. If I go tomorrow it will have to be very early.

Sunday it's supposed to get up to 54 degrees with a low of 15! That's just nuts!

Since I didn't go grocery shopping, I have no pop tarts and no bread for toast. My breakfast this morning is a Reese's peanut butter tree ;)

burr!!!!! 45 mph winds!!!!!:eek:
I am sorry that it is that cold maybe you can just hunker down eating trees until it is warmer?
(((((HUGS)))))
bizi

I should have trusted my instincts and gone grocery shopping on Friday…

When I opened the door to go out on Saturday I almost turned around because there was a lot of snow and they had not shoveled the stairs or the walkway, but I'm a jackass, so I went out anyway.

My main problem was getting back into the apartment from my car (my husband carried the bags) because the walkway is a little uphill.

I should not have gone out, but I made it back safe. I was lucky this time, but there's no need to tempt fate… I won't be making any trips like that in the future.

Football at 4:25pm today. Yay! :)

you were lucky and did not fall.
(((((HUGS and LOVE)))))))
bizi

I didn't have a good weekend. There's been a string of those. My husband's been so, um, unpleasant lately, and it's wearing on me. I'm really upset because of his unwillingness to help me this weekend, and his uncharitable attitude when he did. You wouldn't want to ask for his help either.
He does nothing at home, with the exception of taking out the garbage when he feels like it, unless it serves his own wants or needs, and then he wants a ****ing trophy for doing it. If I had the money, I'd hire someone to come in for a day to take care of all the **** that he's been neglecting that I can't do myself.

Sorry, just venting.

I have errands to run today. Everything that melted yesterday has surely frozen. I can't hide inside all winter, but I can be smart about going out. If the steps are covered with ice when I open the door to go outside today, I'm going to call the office and tell them I need someone to come over to treat them before I will go out.

Because the football game was on at 4:30 yesterday, I ended up missing about 45 minutes of it making dinner. I hate that. There were no scoring plays during that time, and Pats won though.

I am sorry about your hubby.
Wish things were different for you.
(((((HUGSand love)))))
bizi

Kay,

Do you have a place that delivers groceries?


Have you discussed with a social worker how you could get more help with
the things that you post here?

M

I see my neurologist tomorrow. He's wonderful. I have a lot to talk about at this appointment and I'm interested in what kind of input I'll get. I really don't want to have to get another MRI because I've had a million, it won't influence the treatment he will prescribe, and I have an outstanding bill with the company who performs them. I hope that he will write me a letter regarding the difficulty I have accessing my apartment. I already have the one from my PCP, but it can't hurt to have 2.

There was almost no ice to contend with yesterday. I got an early start, and was able to get my errands done easily :)

I got in the laundry room first this morning, so I'll have plenty of time to get it out of the way before the haircut I've been looking forward to. I'll be right down the road from a store where I need to buy a gift certificate… the last Christmas-y thing I have to buy… so that's pretty convenient.

I'm still using my e-cigarette, but I started stealing about 5 of my husband's cigarettes a day and am having a hard time quitting entirely. I think part of the problem is that you're supposed to smoke an e-cigarette the same way you would smoke a regular one so that you're getting the same amount of nicotine, and I haven't been doing that. So, I'm going to pay attention to how I smoke one of my husband's crappy cigarettes today to see how many puffs I take, and how long I take between puffs, etc. Maybe that will help. I really do like the e-cigarette- more than cigarettes- this is an obvious psych problem. Anyway, I will keep trying…

We could get groceries delivered by a rather expensive store for a fee, so using their service is out of the question. I've made food shopping a little bit easier on myself by finally stopping bringing in bags. I think I will be doing my food shopping very early Thursday morning to avoid the anxiety caused by too many people, too many ***holes.

I had an RN caseworker for 3 months after I was discharged from the psych hospital last time. When I came down, she discharged me because I'm high functioning and able to coordinate my own care. My insurance company keeps calling me trying to get someone back in here to evaluate me because of all my medical problems tho. But I know that there's nothing that they can offer me that I can't do for myself.

I'm not interested in a social worker. I don't qualify for home services because I'm not "home-bound," and we don't qualify financially for services and programs. So, there's nothing a social worker could do for me either. He/she would just be another person to tell me I would be better off if I got divorced, and I'm not interested in getting divorced.

I know that my marriage isn't healthy, I'm being emotionally/verbally abused, and that I'm a codependent. It isn't all bad though. I love my husband very much. We have a strong connection, have good times, and are mostly comfortable together. Unfortunately he doesn't usually do anything positive that's really noteworthy, and you guys just hear the bad **** when I have to vent. I will look for some positives to share with you guys in the future.

Thank you for being honest with us about your husband.
I wish things were easier for you.
I do believe love is a verb and a decision. Irregardless of how he is treating you...you choose to love him.
Good luck tomorrow at your doctors appointment.
(((((HUGS))))
love you
bizi

Kay

I would use the caseworker or whatever the insurance company is calling it.
But not exactly to become unindependent. See I'm wondering if they could help you with the apartment complex.

Also, not exactly to keep you from becoming independent but ask if you could use the services they think good mainly for when you really need help. Like during the winter, to engage an agency or someone to get your groceries.
Things like this.

Donna :hug::grouphug:

I wouldn't benefit from the evaluation from the insurance company because I'm managing the issues they're looking at well on my own right now. If that changes, and it could, my PCP could request a case manager for me.

I worked as a home health aid in my state for several years, and I know that to qualify for services (like food shopping, laundry, and cleaning), you have to be home-bound and they almost always disqualify you if you live with an able-bodied person who can provide the services for you (even if they should but don't). The cost of services is also based on your income. If I was able to get services, they would be very expensive.

I know you guys want to help :group hug:
Things are hard, but I'm tough. I just *****.

I have the appointment with the neuro today. I have to jot down some notes, and hope I don't forget anything. I think I saw him 3 months ago? I know there have been recent changes (I have to read this thread to find out when they started tho), but I don't remember how ****ty I was doing the last time I saw him for comparison… obviously ****ty, but I have absolutely no sense of time. I guess I'll let him figure it out.

We are doing a little bit better financially right now thanks to my husband's Christmas bonus, a couple of his good paychecks, and a surprisingly generous Christmas check from my father (I didn't even get a card last year) :):):)

We need to save more money before we move though. First, last, and security adds up, and we have to have enough left in savings to be comfortable after all is said and done. We need to sit on this money and pretend we don't have it, and work on some of the things I came up with to put away some more.

Kay,

I hope that the neuro appt went well.

'Happy to hear about the gift from your father.


Mari

I hunted for my debit card for an hour and a half this morning because when I went to check my lottery tickets I noticed it was gone. I was out searching the car around 6am, and freaked out because I couldn't find it. I eventually found it in the garbage. No idea how I was careless enough to throw it out… just glad I found it.


My neuro wants me to go back to the Canadian crutch. He's more concerned about me "breaking my head", than me breaking my arm if it gets caught up in the cuff in a fall.
He doesn't seem to think that I will benefit from PT now, but he gave me the option to go if I want. I declined for now. If I change my mind, I can call the office at any time, and he'll write the script.
He had no problem writing me a letter re: moving. Like my PCP, he strongly agrees that I shouldn't be living here anymore. I forgot to ask him to include the words "accessibility" or "accessible" in it. I thought about calling back to ask him to rewrite the letter, but I'm not going to do that. If I ended up needing that, I'm sure he would be willing to write another letter.

We're still just going to monitor my MS, and I'm still not going to treat any symptoms at this point.
I've been very upset since seeing him yesterday. It's has nothing to do with treatment decisions. I just know I am doing significantly ****ier. I would like to think that I will get better, or at least not get worse, but I just can't do that. I seem to be declining more quickly than in past years… I'm sad and it's scary. Of course I already knew these things, but seeing him made them "real."

I'm trying my best to push these feelings into the background because I can't afford to indulge myself in self pity. This is really ****ing bad timing. The second anniversary of my s/s attempt is tomorrow. I've been doing okay there, but I can sense some feelings bubbling up a little. I don't know how to explain how I feel…

I guess I'm just really overwhelmed right now :(

i heard on the radio today again about a breakthrough in not having ms get worse.

I am sorry Kate that you are going through this.

Do what you can to self-soothe --- or if not soothing, then something else that helps you feel o.k. enough.




M

Bobby, Close to 90% of people with MS have relapsing-remitting MS (RRMS). When people talk about "MS" that is almost always what they are referring to. I have progressive-relapsing MS (PRMS), which is rare (about 5%). I've also been diagnosed as primary progressive (PPMS, about 10% of people with MS). There is some dispute now as to whether or not PRMS and PPMS are separate diseases or not though. Almost all the research money goes into treating RRMS because it is the most common form of the disease, and the mainstream meds aren't effective in treating progressive disease. I tried for years though.

When I got my forearm crutches 2 years ago, I got youth cuffs because my arms are skinny and I didn't like the feeling of them rolling around. I went out with one yesterday and my arm was in a fixed position that does NOT work well with how I walk now. So, I went online and bought adult-sized cuffs when I got home. I was surprised they were only $18 each. I bought an open and a closed one and will see which one I prefer. I got an email saying they shipped yesterday. I will stick to the cane until they arrive. It's hard enough to walk right now as is.

I got my food shopping out of the way yesterday. I didn't bring in one bag, and my husband didn't call me to help with the door because he didn't want me to have to go out (that's something positive :) ).
I have to pick up a package that was signed for at the office while I was out, and make a quick trip to the pharmacy today, but then I won't have to go out for several days. I do a hell of a lot better navigating the apartment than I do the world outside, and it will be good for me to forget how bad my gait has gotten for a little while. I hope it will help me focus less on the MS issue in general.

I need to vacuum today, and I'd like to make cookies if I feel up to it. There are other things I can do to occupy my time, as today is a good day to distract myself, but not to the point where I exhaust myself.

As far as the anniversary goes, I am doing well. I am aware of it, but there is a big brick wall up. There are zero thoughts or emotions beyond that awareness right now. Denial is ****ing awesome!!!

Keep doing well, Kay. :hug::hug::hug:


M

I did vacuum yesterday, but never got to making cookies because I got caught up in doing sedentary computer and cleaning things and lost track of time, but that's okay. I was distracted.

I'm going to make chocolate chip cookies (my husband's pick) this morning. It's my go-to recipe, so it won't disappoint. I won't wait much passed 9am to start because everything takes me forever now. I don't want to rush, and I have other things to do today, so need to spread my activities out. My husband was up late last night, but he will either have to block out the sound of the stand mixer, or get his *** out of bed.

The Pats play at 1pm today. I'll be able to watch the game because we ordered Chinese food last night and have leftovers for lunch. I can start wrapping presents at half-time… I don't have a lot.

We're having ham tonight. It will be much, much easier to pull off than a turkey dinner. Because of the game, I won't be able to get a nap in, but on weekends and holidays we eat a little later, so I will have plenty of time to relax. Maybe I will just lay down for a little while vs. taking a nap and that will help carry me through the day.

I took my time (almost 3 hours) and enjoyed making the cookies. They came out with a great taste and texture, so I was very pleased.

The Pats were slaughtering the Jets yesterday long before I decided to give in and take a nap. I felt bad because it was Christmas Eve, but I knew I would be making dinner later and need the rest.

Dinner came out well, but was late because of lack of coordination on my part again. We watched some Christmas movies I recorded including Rudolph, which is one of my personal favorites.

My husband is going over to his mother's house today, and will likely be over there for hours. I'm going to stay here with the kitties and watch more Christmas movies, maybe with a nap thrown in somewhere.

Right now I am SOOOOOO MAD at him…
It's not worth getting into, and I guess I don't have the patience to. All you really need to know is that it takes a hell of a lot to make me REALLY lose my temper, and I completely lost it. He was calm and mainly took it…. because he knows damn well he was wrong.

I guess I wasn't going to have much of a Christmas anyway.

Did your ham come out to your liking? Glad to hear that the cookies turned out well.

Really sorry to hear about your Christmas.
I hope that things got better.:hug::hug::hug:


M

I bought a small, boneless, cut "brown sugar and spice" ham. It didn't come with a glaze packet, so I made my own glaze using brown sugar, honey, cloves, cinnamon, and allspice. It was very good.

Things were okay when my husband got home from his mother's. We ended up watching a couple of Christmas movies and turning in early.

The evening turned out much better than expected :)

It would be nice to have someone to talk to about my recent MS relapse, but as usual, my husband doesn't want to hear it or see it because he's in denial. Part of him gets it, but I guess he just can't deal with it.

Trying to get up that walkway and navigate the stairs to get in and out of the apartment building is 100X worse now. I need him to acknowledge how hard it is for me because we need to save enough money to move, and that may mean he has to work more. I don't know if he's willing to do that though.

I think I'm going to open the subject up for discussion today. I don't even have an idea of how much money he wants to have before we do move, and I think that's a worthwhile question to ask.

I try that with my husband occassionally and rarely find success because he
would rather live with a certain degree of denial and I do not blame him.

Still, sometimes he needs to know the serious of the situation so he can
do /not do something.


=-=-
Lately I have been trying something different like this:
"Things with my situation are really serious, more serious than
we have discussed before, I need you to stay home today (or whatever it
is I need -- can't come up with better examples/situations right now).


He listens to my needs most of the time.

M

My husband hates this apartment, and while I'm sure he would like to move, I think he is less motivated now because he isn't as angry now that the bathroom ceiling is done. I'm sure that moving during the winter isn't appealing, but we would need to give 60 days notice, which would mean if we gave notice now, we would be moving in March.

Yesterday I told him that it is even harder for me to get in and out of the apartment now, and asked how much money he wants to save before we move. His only response was, "more." I told him I wanted him to think of a specific number, but I didn't follow up on that later in the day.

I think you are right, Mari. I think I'm letting him bury his head in the sand to my own detriment by not being more open and direct, but that doesn't mean that strategy will do me any good with him.

I'll tell him today that I NEED to move out of here as soon as possible because it's such a struggle for me to get in and out of the apartment, point out that we'll be stuck here until at least March, and tell him I need him to come up with a target number. I wish I could tell/ask him to work more, at least temporarily, because we could save money much faster, but he hates his job, and does NOT like to be told what to do.

Last night when I asked my husband how much money he wanted to have in savings before we move, he said he didn't know because he didn't have enough time to think about it. I was firm when I told him I NEED to move as soon as possible, and I NEED to know we're working towards that goal…

He did give me a number, and it's not unreasonable, but I don't know how long it will take us to get there. We were able to put some money away recently. I think we can maintain what we we have, but I don't know how much, or how quickly, we can build on that.

He mentioned buying vs. renting, but that's not realistic because we would be here FOREVER trying to save at least DOUBLE the amount of money that he wants to save now… I'll keep playing the lottery… and maybe we should go to the casino and hit the roulette tables… lol.


I have abandoned the e-cigarette and been smoking regular butts for over a week now. I don't plan on giving up though, so I guess I have a New Year's resolution on my hands…
I may have more reason to quit soon, as I'm having pulmonary function tests done January 4th because I probably have COPD.

We were supposed to have a storm Wednesday night into Thursday, so I thought I was being smart getting my errands out of the way Wednesday, so I could stay in on Thursday, but the storm never happened. Instead we got a surprising amount of heavy wet snow Thursday night.

I was supposed to do the grocery shopping yesterday, but didn't feel up to dealing with the parking lot, and was really feeling like I needed a nap more than I needed groceries. But I had to go out to buy TP because we were out, so I went to Rite Aid to pick some up, and I went to the butcher shop because I knew it would be a circus today.

I have to do the food shopping this morning. I'm dreading it, but the sooner I go, the sooner it will be over with.