[Mari]

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

[OhKay]

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.

[bizi]

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

[Dmom3005]

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

[OhKay]

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.

[Mari]

Kay,

I hope that the neuro appt went well.

'Happy to hear about the gift from your father.


Mari

[OhKay]

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

[mymorgy]

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

[Mari]

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

[OhKay]

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!!!