Re: PING! Rosie Shiver-'nearly' newbie intro-LONG

Thanks very much, Mary. I really appreciate you sharing doc info
with me.

And I feel for you - moving is one thing I hate with a passion!
It's bad enough for a healthy person to have your whole existence
shifted around, let alone for folks like us. My last move I ended
up doing mostly myself, and I ended up almost in shock and
hyperventilating, and sleeping for three days straight. NO fun.

Hope you get re-settled with the least pain and hassle.

Ginnie >^..^<

You can catch more flies with funny than vinegar.
_________________________________

Eq wrote:
I had really bad luck with rheumatologists in this area. A supposedly really good one with an office in Menorah (Hospital) specifically stated he didn't do fibro and refused to do trigger point injections. Because I stated that I believed I had tennis elbow, he did shoot up my elbow with lidocaine. What a joke of a doctor, though!!!

The Pain Management Institute (formerly known as Mid America Physiatrists) in Overland Park, KS is probably your best resource, hands-down. They have a variety of doctors on staff (mine takes Medicare, some there don't, though... need to check if you don't have alternate insurance). They also have clinical trials and do their best to stay on the cutting edge of technology in pain management, often training other doctors in their methods. They are in the Fox Hill Bldg, just off I-435 on the Roe exit (hang the next left onto 109th St), which is the very next block (and then the next right, puts you in their parking lot). 913-599-2440. They just received a bunch of new patients following Dr. Prohaska (sp?) developing cancer and losing her (I think it's a her???) practice/license. Don't know if the 2 events are related or not, as I don't keep up with the rumor-mill. Anyway, don't be discouraged if you can't get a quick appt. They are definitely worth any wait.

Remember, this is (primarily) a physiatrist practice. If you try them out, though, I'd be willing to bet you'll wonder why in the world you ever wasted time, money and/or energy on a rheumatologist, as these guys (think they added some female doctors and nurse-practitioners since I started going there years ago) and gals are the best of the best. Usually, they have a chiro, massage therapist(s), the standard doctors and RNs of course, and any other kind of medical-type person who can manage/help with pain. I really can't say enough good things about them. Finding a new doctor in my new locale is proving to be a major pain in the ass. I may have to drive back and forth for a few months until I can find a decent doc... dunno. My old family doctor (who I left in good standing) didn't want to touch my case because of the seizures, pain management, and other health issues. Things weren't so complicated when I used to have him as my family doctor, and I suppose I present too many risks now.

Anyway, hope you either find The Pain Management Institute or else a good rheumy (not easy in this area, though).

My communications will get less and less now. Dad has let me know that he'll be here on Friday, instead of Saturday, as originally planned. Saturday was a tough enough deadline to get everything packed. Friday has me completely and totally panicked and the "friends" that had offered helped have all flaked out with the exception of one, who has been there for me through thick and thin. He's planning on dragging his girlfriend along on Saturday to help, because he is concerned that we won't have much (help). I hope she doesn't hate me for too long for getting roped in to my moving misadventures. :/

Anyway, hope something (anything?) in my ramblings helps.

Mary



"Ginnie" <ginnies@xxxxxxxxxxxxx> wrote in message news:BScGg.6730$Sn3.4096@xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Thanks for the update, Mary, and Rosie got me straightened out about
what's going on, too. So at least you WILL still have one daughter at
home with you, eventually.

Did I ever tell you that I got approved for di$ability at the same time
you got turned down, both of us for the first time. And because of
some paperwork strangeness after I got approved, my local caseworker
had me call the judge in Topeka that ruled in favor of me. And without
mentioning any personal details of yours, I questioned him why someone
obviously more disabled than me would not get approved when *I* did,

His answer was your youth! He said "your career in disability" was longer
than mine, and thus more costly. ??? Yikes.

Well, I'm glad you finally got what you needed. Give Kenna some skritches
for me, and If you've got the name of a competent rheumatologist around
here, I'm all ears.

Ginnie >^..^<
__________________________________
You can catch more flies with funny than vinegar.
__________________________________

Eq wrote:
We aren't in the same zip code any longer, although we remain in the same metro... at least for the next 6 days, anyway.

I emailed you about getting together for coffee. You didn't respond. I assumed you had your own stuff going on (so no need for smacks or anything). Then all hell broke loose for us (in every way imaginable, actually) and I isolated until we were able to get out of Kansas.

The homemade cape sucked. Kenna was still growing and the cape looked okay sitting on the table, but it fit wrong in too many places. I ended up getting one from http://www.ldsleather.com . I wouldn't order disability equipment from anywhere else, either, and I'll tell you why that is. She is "one of us" in that she is disabled, but she makes the equipment herself. The quality, fit and attention to detail is hands-down the best I've ever seen, though. I had specific colors/embroidering in mind and the cape color (purple) wasn't available just then. I told her to just do whatever was easiest and use dark blue or whatever she had on hand...not to go to any extra trouble. Instead, she had the purple rushed and the order still came ahead of when I thought it would!!! If you happen to visit the website, the pics are very good, but they don't really show all the functionality (i.e. for instance little pockets in the cape that are easily accessible for fumbling fingers) of the equipment (my opinion, anyway). Conversely, it would be impossible (also my opinion) to show all the benefits in a simple picture.

[ IMPORTANT NOTE: I don't make any money or get any discounts for mentioning LDS Leather. I do honestly believe, though, that she makes the best equipment available, though. ]

SSDI took 3+ years. We live much better now, though. Extreme poverty is no way to live, especially in that area of Kansas.

Back is now herniated L2 thru L5-S1 (although we suspect L1 involvement because of the painshifts again... from what we can gather from all the test results, it appears that either the degenerative disc disease or the stenosis "eats" a disc every 3-4 years like clockwork and this would be about the right timeperiod for L1). Permanent (and complete) nerve damage to my back and left leg. Two fair nerves in my right leg. I am still upright (loosely interrupted) at this point. Kenna makes me look like I walk well, but even with her, I cannot walk very far. None of us are terribly clear about why I'm still able to be upright, but I'm just thankful that I am. I have a script for an updated MRI & EMG, but there wasn't time before the move... and I guess I consciously or unconsciously chose to not make time. The results of previous testing some years ago was pretty devastating to me, so maybe not knowing is better (especially when surgery seems like the main option and I'm not ready to go under the knife again yet). My doctor is miffed that I didn't get the tests, but he also knows me, so he knows why I didn't get them yet. I generally try to keep (my doctor) happy, but fear kind of overrode this time, I guess.

Youngest daughter has already relocated so that she could start school. I missed her about 5 minutes after she left and have continued (to miss her). It's only temporary, but it still sucks. She is such a vibrant person. Oldest daughter is married with a little girl born this past May 10th and a little boy (born 5 weeks prematurely and with suspected meningitis) last June 7th. Grandkids are the most precious thing on the planet. They really are. I love my girls, but grandkids wrap themselves around your heartstrings so immediately and so fully that you don't even see it coming! Anyway, I flew to Hawaii with them this past July so they could join hubby/daddy who is in the Army. They are thriving (and in such a beautiful place!!!), but needless to say, I miss them like crazy too.

Am sending them a webcam this week, since they finally got their household goods, including computer. Want to see my Grandbabes!

Anyway, that's pretty much the update...

Hope things are going well for you. We didn't meet IRL, but there's always this newsgroup, thankfully, to converse with others that understand what we're going through and/or can empathize...

Mary


"Ginnie" <ginnies@xxxxxxxxxxxxx> wrote in message news:u18Fg.9139$xp2.3647@xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi, Mary!

It finally dawned on me yesterday that we live in the same zip code (Shawnee?)
and why we never got together back then, I don't know. If I dropped the
ball on that one, smack me. Remember, it was back when you and I made
our first applications for SSD, and you were getting your service dog, making
her a cape and all, and you and your daughter moved to another place.

But heck, you're moving several states away now. Boo! We coulda leaned
on each other. BTW, how's your dog doing, AND how are your legs doing?
Still need the dog to help you stay vertical?

I read your posts about your recent trip, and the reasons for it. Please don't
feel the 'empty nest' thing too often; It's kind of liberating to live alone,
but don't let anyone tell you it doesn't get lonely a lot. I've found myself
getting a little too insular - partly housebound by physical garbage, but
I know when I've hit the point of "too long talking just to my cat", and I
reach out for homo sapiens contact!

Eq wrote:
<snip>
I have both chronic fatigue & FM (and all the opportunistic stuff that seems to ride along with them... it's a growing, dismal, boring list from which I'll spare you).
If you'd like to share all of that, maybe you'd prefer emailing. My addy
above is real, just fill out the thingie that the SpamBlocker throws at you,
unless your email addy hasn't changed from several years ago (Not rr.)
<snip>
As far as the dif between CFS and CFIDS and/or the dif between FMS & CFS/CFIDS (aka M.E...which is what they are trying to rename it and I can't remember the big words it stands for), I'm not sure. Mine's been labeled CFIDS, I think because my immune system seems dampened most of the time
Mine is compromised by very inactive natural killer cells. Rock bottom.
The T cells and the HHV6 were normal and negative, resp.

Aside from the FM & CFIDS, I have the long list of specific and general problems with my spine and legs, so a part of me wonders if even if they find a cure for FM/CFIDS, will I still be a mess because of all the spine damage?!?
I worry about the same stuff, but I promised myself that I'd check in every
few years with the neurosurgeon who dx'd my Fibro, and who is the only
surgeon I'll allow near my spine. That way, he may have suggestions for
interventions. Or not. I hope it's not 'not'.
I thought about going back on fentanyl, however a dear friend mentioned that there has been found to be abuse potential with it (not in using it correctly, of course, but where there's an evil will, there usually follows an evil way, unfortunately).
The abuse happens primarily with the original "brand" patch made by
Janssen, which is a multi-layer thing with a clear pouch of fentanyl gel
trapped inside. Junkies can open the pouch, scrape out the fentanyl,
and most likely get an overdose from that much (3 days worth) of drug.

One of the new generic fentanyl patches has the fentanyl incorporated
into the backside adhesive, so there's no way to separate the two substances.
Over in a.s.chronic-pain, I haven't seen any references to folks abusing
that version (I lurk only - the place is a cesspool). That's also the version
of patch I'm using, but I do have my doubts about how truly potent the
generic patch is. There's a story in asc-p that someone's doc had the generic
patch tested by an independent lab, and found near 0% drug in the
adhesive. The only other piece of that form of patch is a clear ***
of what looks like mylar.

The point that was made was that it is probably only a matter of time before the various helpful agencies stop covering those patches.
The generic I use is incredibly cheaper than the Duragesic/Janssen 'brand'.

<snip>
I briefly re-tried the Actiq lozenges (also fentanyl citrate). Unfortunately, they changed the formula and the lozenges (formerly much like hard candy, where you could put it between cheek and gums, get some relief and then take it back out and reuse later) disintegrated in my mouth much like powered sugar, hence the whole "controlling how much medication one gets at once" and trying to use enough for some pain relief then replace it in its sleeve for later was completely and totally obliviated. And, at least for me, that was the appeal of the lozenges... the control of how much and when. Without that control and ability to use it, put it back (repeat until the lozenge is gone), it's pointless for me, not to mention hugely expensive (one month of Actiq was going to cost me $2181 and some change... and even at that price, my pharmacist was going to lose money). I tried 9 of them and then gave up. The new formula simply sucks (my opinion). The pharmacist did say I was one of many to complain, though.
I haven't heard ANYone who likes the 'new' Actiq. They say the same thing,
that the texture and taste are worse, not better. I almost had the chance to
use Actiq for breakthrough pain, but--following some logic *I* do NOT follow --
my former neuro changed her mind to 'no' after I had some mini hallucination
(if that's what it was) with Cymbalta. How a reaction to an SSRI relates to
an opiod THAT I'M ALREADY USING, I don't know.

<snip>

And no, 59 doesn't seem to young for TKR (but I'm no doctor, either). I'd think they'd want to fix it and get you back in shape so that further damage doesn't result... but who knows what lurks in the minds of insurance companies these days (aside from the almighty dollar, of course)???
Funny enuf, it isn't the insurance company at all. It's my orthopod! And
he's the one noticing how my gait is getting weirder and my body angle is
off because I walk without bending that knee. He's the same doc who knows
my right hip is kaput, and throws my gait even further off. I walk like
an old crone. (no offense, crohn annie!) I got the shock of my current life
the other night, when I suddenly caught my reflection in a big store mirror,
and didn't recognize that bent-up hag!!

Hope the rest of the move goes well, and if you feel like emailing, feel free.

Ginnie >^..^<
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