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Thread: Newbie with TM - Needs help or ideas

  1. #11
    Hmm, the OT sounds awesome. Sounds like what I need. I finally talked to the case manager from Bc/BS this afternoon and she said I have to get a referral to all these specialists. This is not on my insurance (it is not an HMO), but she said most of them won't see you if you self-refer. So, back to square one.

  2. #12
    Quote Originally Posted by SunnyDaisy View Post
    I always am in denial when I am in a remission. I think, "Hey, I don't need that thing!" And then when I relapse again I am in crisis mode and it is too hard to get it.
    That's my m.o., too. Even though I have progressive MS, some days are better than others and at those times I dare to hope that my new exercise program/AFO/crutch/fill-in-the-blank have solved the problem. Magical thinking has its place, but oh, what a pain it is not to have "gimplements" at hand!

    I just saw your post about insurance. My OT visits were covered by BCBS - with my plan, you don't need a referral to see PTs or OTs and I wonder if your caseworker is right about your needing one. You might call the 800 number on your insurance card and ask to speak directly to a customer service agent. If it turns out that you do need a referral, probably all you'd have to do is phone your primary doc and say that you'd like a referral to an OT, and explain why. Those kinds of appointments save insurance companies money in the long run, so don't be discouraged - you just need a little bit of practice guidance in order to stay independent, and that is not too much to ask. So be persistent.

  3. #13
    Well, good to know I am not alone in my neurosis!

    When I start to feel a little better it is time to attack that mountain of laundry that has piled up, change the sheets on the bed, vacuum, mop the kitchen floor (yes, I know it is hard to tell, but it is vinyl under all that dirt!).

    It occurred to me later that this case manager is not really working for me. She is working for BC/BS. So, will she be looking out for me, or the insurance company? Time will tell. Right now I am so desperate for ANYTHING I plan to do what she tells me.

    But, I am going to follow your advice and see if I can self-refer. Shouldn't be too hard to find out. That would solve a lot of problems!

    I watched a video at an MS site last week about adaptations you can make to your home to save your energy. Wow! I have been living with this for 16 years, but never thought of so many of them. Or I had done them when I first got sick, but got away from them. Like sitting down instead of standing. I used to always do this, but got away from it because when you are hanging out with non-disabled people you don't want to appear lazy. That's like the worst thing to me, I don't want people to consider me to be lazy. I'm sensitive about it. Probably need to get over myself that way. Sigh.

    So I moved a few things around in my kitchen, just to put the cans of soup and easy foods I make when I am sick next to the stove and at shoulder level. I used to keep them in the corner cabinet just anywhere I could fit them. Well, this one change has made a big difference! I can imagine if I implemented a number of these suggestions. So I am trying to do what I can.

    The laundry is a huge issue for me right now. Everyday it piles up more. And it seems like everyday the basement stairs become steeper and longer and scarier. I did figure out I can put the dirty things into garbage bags and toss them down the stairs, but that only solves a small part of the problem. It just keeps seeming bigger and more difficult as moving is physically more difficult everyday.

    I am going to write a grant for a stacking washer-dryer to be installed in my hall closet. But that is at least a year away probably. It is due in April, and I think they start making distributions in July. When I wrote one for my daughter several years ago, she ended up as an alternate and when there was some money left at the end of the year she got funded. We did not find out until the end of June. So that was around 15 months after I wrote the grant.

    I need an interim solution. We can dirty a lot of clothes in 15 months! lol

  4. #14
    Quote Originally Posted by SunnyDaisy View Post
    I couldn't reach the plug standing up. I am having so much trouble bending today.

    For a brief moment I considered what would happen if I just started driving, but decided it might create some kind of crisis. Just not in the mood for fireworks today. Maybe another time. ;-)

    I hear ya on the hangtag. Wish I had done that sooner. I always am in denial when I am in a remission. I think, "Hey, I don't need that thing!" And then when I relapse again I am in crisis mode and it is too hard to get it. But, life would certainly be easier if I had that.
    Most of them will not move when plugged in... But worst case, get someone at the store to unplug it for ya; done that too. And ya, get your tags. Denial only goes so far. You'll need it, use it when you do, don't if you don't. But have it available. Besides, if we have to deal with this crap, at least we can get good parking... Always look at the bright side.

  5. #15
    Quote Originally Posted by SunnyDaisy View Post
    I am going to write a grant for a stacking washer-dryer to be installed in my hall closet. But that is at least a year away probably. It is due in April, and I think they start making distributions in July. When I wrote one for my daughter several years ago, she ended up as an alternate and when there was some money left at the end of the year she got funded. We did not find out until the end of June. So that was around 15 months after I wrote the grant.

    I need an interim solution. We can dirty a lot of clothes in 15 months! lol
    I'd be curious how you go about this. Didn't even know there was such a thing as grants for this. Luckily for now, my income isn't shabby but... Long term it won't be as nice and something like this can be a life saver. Got any info? You can PM me so we don't go off-topic.

  6. #16
    It is a state grant in KY. It used to be called the Hart Community Supported Living Grant. I think now it is just the Community Living Grant.

    http://chfs.ky.gov/dail/HartSupportedLiving.htm

  7. #17
    Sunny, if you have a GP, check with him/her to see if you have any health problems not directly related to your TM. Don't just assume they are all related. I just found out that my arm pain is not related to my other neuropatic pain. I have developed Carpel Tunnel (probably from being on my computer so much) and so am now wearing an arm brace.

    (P.S., check your PM's)

  8. #18
    I went to my old neuro today, the one who told me not to bother coming back since TM is stable and not treatable. I found the appointment so confusing that I wish I had followed his advice!

    Long story short, his finding on the clinical exam was that I walk much worse than I did last time he saw me. He implied I should see a urologist about the bladder symptoms, although did not say so directly.

    He said he wanted another MRI. I asked if I had ever had an MRI with contrast of the entire spine, because I could not remember that being done. He said, "Yes, I'm sure you have." Then he checked my chart and turned out it had not been done. So now I am going to get MRI of brain and entire spine with and without contrast.

    He had them draw a bunch of blood (I counted 12 vials, but the phlebotomist said there were 15).

    He referred me to counseling at the MS Center, because of all my social stressors. And, because when he asked if I drank alcohol I said that I bought a 6-pack of Mike's Hard Lemonade 2 weeks ago and I have one left. I said I drink one a night when I am under stress. He considered this to be a problem.

    I was really puzzled by this. One Mike's Hard Lemonade per night 2 or 3 times a week during periods of stress doesn't seem problematic. The 6-pack I bought before this one lasted 6 months. But, then I decided he might have thought I meant I was drinking a 6-pack per night 2 or 3 times a week. Not sure.

    So, anyway, I guess I am getting a substance abuse screening or something. Sigh.

    I hate being a sick person! I remember when I was a well-respected professional, getting invited to do speaking engagements, recording interviews for public radio, being paid for my opinions. Then you get sick and everything you say and do becomes suspect.

    I want to say to these medical people, "I am not this woman you see. I am not this sick person. I wish I could show you who I really am." I just want so much for someone to see who I really am. Even saying that is probably pathological.

  9. #19
    I'm glad you're going to be have a full-spine MRI series with and without contrast. I don't think the alcohol intake you describe is even remotely worrisome, so substance abuse counseling at this point seems a bridge too far! That aside, between the MRIs and bloodwork, you'll have a much better idea of where you stand from a functional neurological standpoint - even if the tests don't yield a definite diagnostic label. But if they do, there's a chance you can qualify for condition-related financial assistance in your state. Thanks for this update, and keep us posted.

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