Observations about this site

[pennstater]

Daisycat - glad your kitty is doing well and that you are able to see some reasons to be grateful.

I hope you have some good plans for vacation. Stay busy, do things you used to enjoy. Force yourself if you have to - it is when we spend too much time alone in thoughts that we can head down some dark roads. Get some natural vitamin D and enjoy some time in Mother Nature.

[Daisycat]

Daisycat - glad your kitty is doing well and that you are able to see some reasons to be grateful.

I hope you have some good plans for vacation. Stay busy, do things you used to enjoy. Force yourself if you have to - it is when we spend too much time alone in thoughts that we can head down some dark roads. Get some natural vitamin D and enjoy some time in Mother Nature.

I plan to spend one day getting caught up on sleep. Work has been exhausting lately , but after that I think I have plans for every day. And TY about my kitty

[IntoDust]

I just thought of something for you, Daisycat...

Daisycat,
I believe I read that you are on Capoxone. Is this right?
Did you go through Shared Solutions to get your medication? When I spoke to the people at Shared Solutions, one of the questions they asked me was whether or not I would want to be put in touch with somebody who has MS and has had lots of experience with it. They have a program where they match you with other people based on similar interests and other criteria. Kinda like a buddy program.
My first reaction was that I did not want to speak to anybody. I felt really strange about being connected with a stranger but I think that’s just because I’m actually very introverted.
I do still think that it would be very helpful for you to talk to a counselor, but do you think it would help to be connected with someone who isn’t a counselor but who shares not just this disease but similar interests?

[Daisycat]

Into Dust

Yes I am on Copaxone and go through Shared Solutions. They asked me if I wanted to find local support groups when I first went on it ( a year ago). They didn’t mention the one on one thing, or maybe they did and I can’t remember. Those few months are a blur. I’ll ask them about that at some point.



I am also very introverted and have a hard time opening up to people. A Doctor I used to work with , who I ended up becoming good work friends with and actually telling him about this thought I hated him for almost 4 months because I never talked to him at all.

Funny thing was we actually found out we had a lot of things in common , so I had a really easy time talking to him about things. (Even about this disease actually – only 2 days after I got out of the hospital)



It might be worth looking into if I could find someone who I have things in common with. It makes things easier when we can sometimes just have conversations about things that aren’t depressing.

[IntoDust]

Into Dust
Funny thing was we actually found out we had a lot of things in common , so I had a really easy time talking to him about things. (Even about this disease actually – only 2 days after I got out of the hospital)

It might be worth looking into if I could find someone who I have things in common with. It makes things easier when we can sometimes just have conversations about things that aren’t depressing.

You may have found it easier to start talking to the doctor once you found some common ground with him. I know that most introverts don't like small talk and can find it annoying at best and impossible at worst. Personally, I don't come off in such a way that someone would think I didn't like them but I can come off as a bit socially awkward. I hate it so much. But if we talk about something that has even a little bit of depth, then it's obvious that my social skills are just fine and I'm not as daft as you may have thought. I'm just very silly.
As for having light hearted conversations, that's what a lot of us on the site are trying to do sometimes. There will always be posts that can be depressing, posts that seem impossibly cheerful and everything in between.
As I said, I think it would be good for you to reach out to Shared Solutions and ask about their social programs. I don't have any other information about it because I turned it down so quick, but I am rethinking that decision.

On a final note, I would like to point something out. You said the words, "Even about this disease actually". I don't think I've ever heard you refer to it as anything other than "this curse". I think this may be a small bit of progress on your part. One step forward, then another. Then another.

[Daisycat]

Intodust-



Small talk is the worst. I think that is why I dislike the day I am not scheduled in surgery. I have to make small talk with clients and it drives me crazy. I can talk to them all day about the surgery process for their pet and what to expect , but out me in a room and after the initial history I get about their pet I want to scream having to make small talk.



The reason he thought I didn’t like him was because I never talked to him, but I didn’t talk to anyone. I was new there and it takes me awhile to feel comfortable around new people. If someone starts a conversation with me I will always talk back to them, I just really don’t see the point in small talk. I would rather discuss things we both care about.



I’ll call shared solutions soon. I am sure they have something like that. I would want to ask to speak with the person on the phone first to make sure we “clicked” since opening up to someone about this is very hard. I resisted telling my PM for about 6 months, but when that DR got a promotion and went to a different city I ended up telling her. It was because of his advice, he thought I should at least have one person there who knew and would understand why some days seem to be harder for me than others.



And I did notice I said disease and not this curse. I am trying to see if changing what I call it changes anything. I do not think I will ever be able to say the actual words, but maybe one day. I find it funny I have no problem saying CIS but the other one I cannot say. Of course maybe that is because my old neurologist said CIS doesn’t exist. (I won’t even get into my million issues with him) I really think he is part of why I am having such a hard time with this.



I see my new one in a month, so hopefully he is decent. He has good reviews online, but I know that doesn’t mean anything. I have another one scheduled at the end of November with another one in case this second one doesn’t work out. If I end up loving him I will cancel the other appointment.

[IntoDust]

And I did notice I said disease and not this curse. I am trying to see if changing what I call it changes anything.
I believe it will. Calling it by it’s name takes away the fear it gives you.

I do not think I will ever be able to say the actual words, but maybe one day. I find it funny I have no problem saying CIS but the other one I cannot say.
I say it all the time. Part of it comes from a joke between me and a friend of mine. We were talking about “people first language” since her daughter is autistic. We were interested in how we could say, “(Her daughter) is autistic”, yet we couldn’t say “Katie is MS”. I realized that we could, if we say it really fast because it sounds like I’m saying, “Katie is a mess”. I am not my disease, but I can be a bit of an unorganized mess!

Of course maybe that is because my old neurologist said CIS doesn’t exist. (I won’t even get into my million issues with him) I really think he is part of why I am having such a hard time with this.
CIS has to exist! What does say about patients who have a single episode of transverse myelitis? We had two such patients at my last job and they were technically CIS. It was a one off event. No DMD’s and no progression for 10+ years each.

I see my new one in a month, so hopefully he is decent. He has good reviews online, but I know that doesn’t mean anything. I have another one scheduled at the end of November with another one in case this second one doesn’t work out. If I end up loving him I will cancel the other appointment.
It’s good that you have the opportunity to switch neurologists. Keep going until you find one that helps you, even if you have to go out of network to find one. If you can afford it, it’s money well spent because you are trusting this person with your future.

[Daisycat]

I had to laugh at the “Katie is a mess” thing. I am so unorganized everywhere but at work so saying it would be easy for people to believe that I was saying I am a mess. I think I misplace my keys pretty much every day since I started driving. I’ve finally started putting them on my nightstand when I get home and that helps most of the time. If I forget that next morning is rough.


I agree that CIS exists, him saying that was just amazing to me. Maybe he has just never seen anyone who he thinks has had it so since he hasn’t seen it (that he will admit) he doesn’t exist. I don’t know what his thinking was, but I am just glad to be done with that man.


I am very hopeful my new one will be decent. My first appointment is an hour long and the nurse said he is going to go over my MRI images with me and to bring a list of questions. So that’s already a plus. I have my copy of the MRIs, but I am not allowed to look at them since my boyfriend thinks I will assume the worst and go crazy. ( He is probably right so I am being good and waiting until next month)

[IntoDust]

I think I misplace my keys pretty much every day since I started driving. I’ve finally started putting them on my nightstand when I get home and that helps most of the time. If I forget that next morning is rough.
I have just enough cognitive dysfunction to lose everything. I also have certain places I set my phone, my keys or my purse. Anywhere else and I’m screwed.
When my boss would do geriatric assessments, he would say certain things are normal and certain things are red flags. He’d ask things like, “Do you ever put your phone in the refrigerator?” and in my head I’d think, “No. Everyone knows your phone goes in the pantry!” But the questions he’d ask them really made me question my own cognitive issues. Luckily they’re not always too bad.

I have my copy of the MRIs, but I am not allowed to look at them since my boyfriend thinks I will assume the worst and go crazy. ( He is probably right so I am being good and waiting until next month)
MRI images are very difficult to read. I had to download software as you can’t view DICOM files on a Mac, so I spent a lot of time reading about it, looking at images on sites like Radiopaedia and trying so hard to understand what I’m looking at. Seeing your own brain is so weird. But it’s easy to misinterpret so many things on the scans that are normal variations in brain tissue.

[Mamabug]

Intodust-

I’ll call shared solutions soon. I am sure they have something like that. I would want to ask to speak with the person on the phone first to make sure we “clicked” since opening up to someone about this is very hard.

... And I did notice I said disease and not this curse. I am trying to see if changing what I call it changes anything. I do not think I will ever be able to say the actual words, but maybe one day. I find it funny I have no problem saying CIS but the other one I cannot say. Of course maybe that is because my old neurologist said CIS doesn’t exist. (I won’t even get into my million issues with him) I really think he is part of why I am having such a hard time with this.

I see my new one in a month, so hopefully he is decent. He has good reviews online, but I know that doesn’t mean anything. I have another one scheduled at the end of November with another one in case this second one doesn’t work out. If I end up loving him I will cancel the other appointment.

Daisycat -- you seem to be taking a lot of positive steps lately. :-)

[Daisycat]

Yeah I figured looking at the MRI own my own could go badly. I would have a small idea of what I was seeing , but I would not know what it meant at all. Knowing me I would start dr google and google everything I saw and that would be bad.

And TY Mama… I am trying although some days are a lot harder than others. But I am still trying.

[Mamabug]

..

And TY Mama… I am trying although some days are a lot harder than others. But I am still trying.

You're doing it, DaisyCat. You are beginning to accept the things you cannot change, and change the things you can.

I'm not sure if you are feeling serenity yet, but, in time, that, or at least contentment, will come.

But, you are demonstrating courage in beginning to make changes -- both in your attitude and in looking for health strategies to deal with your MS. And you are making some wise decisions -- ie: showing wisdom.

It won't get rid of all of the hard days; life still won't be all puppy dogs and rainbows. But, it will make the hard days less frequent and more easily managed.

Grant me the serenity to accept the things I cannot change,
the wisdom to change the things I can,
and the courage to know the difference.

[Daisycat]

I’m trying to work on my health more. I work out on my days off and it’s about 50/50 on the days I work.

If I leave work and I’m already at 12000 steps I take the night off. I’ll take my dog for a walk but that’s all I can handle on those days.

[Seasha]

I’m trying to work on my health more. I work out on my days off and it’s about 50/50 on the days I work.

If I leave work and I’m already at 12000 steps I take the night off. I’ll take my dog for a walk but that’s all I can handle on those days.

Good for you, Daisy!

12000 steps? Are you Wonder Woman or is it 12,000? Even so, that's fantastic!

[Daisycat]

Good for you, Daisy!

12000 steps? Are you Wonder Woman or is it 12,000? Even so, that's fantastic!

12,000 steps. I can get a lot on a crazy day at work. On days like that I just want to come home and be lazy with my dog.