SPRING DRIVE 2006 - Part 5: "What's wrong with Clarity"

[Clarity]

Clarity,

A couple of other things to throw out there for you...

ALS/ALD have definitely come up. I don't present as a classic case, even though, particularly in the last year, I've started to demonstrate some of the related issues. Particularly with the swallowing/choking, dexterity issues, etc. It comes and goes though. There are times, when I got to type a sentence -- let's say "the quick brown fox" for an easy reference. Everything happens like normal. My brain says "quick brown fox", my fingers start moving to "quick brown fox", and what I get is something like "quucv vfwfoc". Somewhere in there, the message, or the delivery, is breaking down. Makes me think about a range of disorders that involve problems somewhere on the axon/dendrite level, but who the hell knows. I suppose I could start chugging Lorenzo's Oil and see how that goes.

Guillain Barre has definitely come up a lot. The problem is, a *ton* has come up in the last year or two. At a time where I've had no health care at all. My access to docs has literally been through a few who are on BP (Tibor, Dr. Hopkins, a few others), and friends of the family. Aside, of course, from the isolated ER visit, and a headshrinker who was sent to my house by the courts.

All of what you mention, are right up at the literal top of lists that need to be investigated. Like the spinal tap/eye exam/MRI for MS.

A few people have suggested it could, strangely enough, be an unusual case where more than one 'disease' might have converged. My own biological version of The Perfect Storm. Don't know.

Thank you though, you've brought up a few angles of approach that I will read up on.

You said CharlotteBuckeye's wife had some of the same symptoms as you and she is on disability. I wonder why it's different in your case. Doesn't make sense to me.

Eh, resources, perhaps. A more open-minded judge. I don't know. They were fortunate enough to find a doc who was willing to go on the record and say "this is real, this is disabling her." I've had docs cancel appointments with me, in the past, when they found out I had an open social security case. I couldn't get a Florida lawyer to take my case, because it's not an easy one. None of what I detail above, is enough, because there's no name for it.

No name = not real.

 

[Clarity]

Reading the history and the difficulty of getting diagnoses from the various health care providers caused a wild idea to enter my brain. It's probably only a wild idea, but here it is anyway.

The TV show 'House' bases its episodes on cases which are extremely difficult to diagnose. I'm wondering if there is any possibility that the medical history would be of some value to their writers, or whether the show would be willing to provide or pay for some medical treatment in exchange for using some version of the story (with names and places modified).

As you can likely tell at this stage, I'm open to any possibility. What you guys are reading in this closed forum, will likely, in the near future, be present in condensed form for anyone and everyone to see in the open forums. At that point, there will really be no 'privacy' issue.

What I will never be able and/or willing to do is make an overtly open case of it. I had a friend suggest I contact the local news at some point -- but I just could not do that. I don't want the attention. Don't want these issues to define me, or even my life, no matter how much they dominate or destroy it. My simple goal is to adapt to whatever comes, and just get through my days as best I can.

 

[Clarity]

Forgot to mention prednisone in my write-up. That's helped before, with the allergic reaction type issues, and some of the sinus and internal tissue swelling problems. But at the cost of worsed heart issues. Just thought of it because I saw the bottle in my nightstand, was prescribed by the FL ER doc.

 

[Deety]

Thank you for sharing, Clarity. It's actually a gift to be given the ability to do something about your situation rather than just wishing there were something we can do.

I also think BB73's line of thinking should be explored further.

No name for the problem, so it doesn't exist. That my case has been open for 4 years works against me. Approving me now would, I'm told, be like admitting they dragged out out with all the declinations, and giving up all the money that would have paid out during that time. FWIW, I offered at one point to surrender any claim to the back funds if it could mean approval, but that didn't fly.

Forgot to pass this along... one of the people I consulted has experience worked previously with Manpower's disability work program. She told me about several cases of declined benefits, one of which went on for two or three years, that were only resolved only once the right advocate was found who had the ability to push everything through the system. We surely must have someone here who either is in a position to apply pressure or knows someone who is - or knows someone who knows someone. Let's ask.

 

[Bucklion]

ALS/ALD have definitely come up. I don't present as a classic case, even though, particularly in the last year, I've started to demonstrate some of the related issues. Particularly with the swallowing/choking, dexterity issues, etc. It comes and goes though. There are times, when I got to type a sentence -- let's say "the quick brown fox" for an easy reference. Everything happens like normal. My brain says "quick brown fox", my fingers start moving to "quick brown fox", and what I get is something like "quucv vfwfoc". Somewhere in there, the message, or the delivery, is breaking down. Makes me think about a range of disorders that involve problems somewhere on the axon/dendrite level, but who the hell knows. I suppose I could start chugging Lorenzo's Oil and see how that goes.

Guillain Barre has definitely come up a lot. The problem is, a *ton* has come up in the last year or two. At a time where I've had no health care at all. My access to docs has literally been through a few who are on BP (Tibor, Dr. Hopkins, a few others), and friends of the family. Aside, of course, from the isolated ER visit, and a headshrinker who was sent to my house by the courts.

All of what you mention, are right up at the literal top of lists that need to be investigated. Like the spinal tap/eye exam/MRI for MS.

A few people have suggested it could, strangely enough, be an unusual case where more than one 'disease' might have converged. My own biological version of The Perfect Storm. Don't know.

Thank you though, you've brought up a few angles of approach that I will read up on.



Eh, resources, perhaps. A more open-minded judge. I don't know. They were fortunate enough to find a doc who was willing to go on the record and say "this is real, this is disabling her." I've had docs cancel appointments with me, in the past, when they found out I had an open social security case. I couldn't get a Florida lawyer to take my case, because it's not an easy one. None of what I detail above, is enough, because there's no name for it.

No name = not real.

No problem, just tossing it out there. I'm sure everything and anything has been suggested to you at some point.

Ugh, prednisone. I had to be on that once for a few months...it actually helped fight a massing eye/ear infection I had (one of the worst the ER doc had ever seen), but it was bad for my heart, and was worse on my personality and mental control. I was a different person for months afterward.

Oh, and one more to toss out...Maxalt is a popular migraine med...not sure if you have any access to presecriptioned meds, but if you do, this one could help your migraine symptoms.

 

[Clarity]

Thank you for sharing, Clarity. It's actually a gift to be given the ability to do something about your situation rather than just wishing there were something we can do.

I also think BB73's line of thinking should be explored further.

Forgot to pass this along... one of the people I consulted has experience worked previously with Manpower's disability work program. She told me about several cases of declined benefits, one of which went on for two or three years, that were only resolved only once the right advocate was found who had the ability to push everything through the system. We surely must have someone here who either is in a position to apply pressure or knows someone who is - or knows someone who knows someone. Let's ask.

Certainly. And I probably should have done so earlier. Getting disability would be an instant 'fix' for the fiscal issues, which would make focusing on trying to find a correction easier. It would be nice not to have to worry about getting kicked out of this place. There isn't much I wouldn't do at this point for basic comfort and security.

For the record, I don't think I needed to get this bad. Diagnosed and treated, and I think I'm just another 'normal' person functioning the way normal people take for granted. I could be wrong, but it's how I feel, and it's probably led to much of the frustration, and the word 'waste' that so often pops into my head.

No problem, just tossing it out there. I'm sure everything and anything has been suggested to you at some point.

Ugh, prednisone. I had to be on that once for a few months...it actually helped fight a massing eye/ear infection I had (one of the worst the ER doc had ever seen), but it was bad for my heart, and was worse on my personality and mental control. I was a different person for months afterward.

Prednisone, the one time I was on it long enough to really see a change, made my face puffy, which was just sort of annoying. But it drastically increased and worsened my heart issues, and we did notice a marked increase in my irritability. Still, it's been one of the more effective things I've taken for a couple of the issues. I took it during and shortly after the move, but phased off quickly, and haven't tried to get more. I want to take it as little as possible.

 

[3yardsandacloud]

Well it sounds like we need a plan of attack. I suggest the fundraiser announcement (with some additional changes/alterations) needs to go out soon. Probably tomorrow. The letter should probably remain basically the same with some type of link to this additional personal information. Whether that is a direct link to this specific info., or a notice that this information is available upon request (we'll PM it to you if you really need to know) is for Will to decide. Obviously he may want to alter, add or delete portions of his info.

I'm hoping that BuckeyePlanet members can see Will and Jo through in the short term. This would most certainly be a pure financial contribution. Possibly raise enough this spring to get them safely into the summer. Possibly raise enough this summer and fall to get them to winter. Obviously this is a short term fix and doesn't really address correcting the problem. We could possibly continue this cycle indefinently, but that certainly wouldn't be the goal. In any event, it sounds like Will doesn't think that cycle could be repeated indefinently anyway.

So, once we start to establish a short term financial 'safety net' for Will and Jo, we REALLY need to focus on connections. Obviously, some other fundraising efforts have been discussed and are being considered, but we need to address the cause and long term solution to Will's situation. That means we not only ask for donations, but AGRESSIVELY seek connections to anyone that can help in the medical, legal, insurance, and disability fields. We need to get people involved, active and interested in Will's case. Hopefully opening this issue up to a wider audience (the whole membership at BP) will allow a much greater sphere of contacts. Finding someone willing to work on Will's behalf (doctor, laywer, etc.) will be key.

Obviously, there are several issues we avoid discussing. I hope we can continue to avoid them because it would mean that other BP efforts have failed. Specifically I mean BuckeyePlanet. Will, if/when the times comes, you damn well better place ads all over BuckeyePlanet. You sell subscriptions. If need be, you damn well sell off every piece of BuckeyePlanet ... the name/identity, the server, the software, the keyboard and mouse ... everything and I mean everything. Whatever it takes ... period.

BuckeyePlanet is a great place and if it ever changed or closed, I lose a part of me. But this whole thing is about community and how we help each other. If placing ads or selling BP gets you another day, or a week, or a month ... DO IT.

OK enough of that shit because it isn't going to happen that way! :)

 

[ScarletInMyVeins]

3yards, what you just posted needs to be released to the public of BP along with an overview of Clarity's situation. There has to be someone, somewhere that can get things done. If not I have no faith in humanity.

We (us mods and admins) could set up some kind of "taskforce", get a plan in place, and take action. My management skills are subpar to say the best, so I'm probably not the best to spearhead a project like that, but I'm sure there wouldn't be a problem finding someone willing to fill those shoes.

 

[Clarity]

An amusing (sort of) footnote to all of this. The hospital that I went to in Jax, just before the move, just wrote (or rather, a letter arrived in today's mail that we just now discovered), wiping out a $2300 debt that was racked up on that visit, and offering limited, but seemingly free, access to them through July of this year. Lol, it's too bad we moved. I'm not totally surprised, well, nevermind, lol, yes I am. The ER doc was sympathetic and more than a little concerned with our situation, but she's an ER doc. I mean, it's "treat-em and go" in there, with the understanding that you follow up with a normal doc afterwards. She knew I couldn't do that, so I guess this was the next best thing. Were I still down there, I'd go in tonight for whatever tests they'd be willing to run.

So I just caught a break, lol, albeit one I can't use. It's too bad I didn't go to them from the start, rather than the Mayo. But the Mayo was the Mayo, and this was considered the "low rent" hospital. The EMTs took me there because I was far too unhappy and distrusting of the Mayo system to go to the closer ER, St. Lukes.

Believe it or not, it actually feels pretty good to know that some medical institutions aren't cold cut-throat businesses that only care about the bottom line, and maximizing profit.

 

[Clarity]

Also, I just want to say that I'm not trying to present all of this as some "woe is me" tale, nor am I trying to play any of it up to provoke sympathy, charity, etc. It's just that I'm openly saying in advance that I need to at least try and get some money back out of BP, and I know that I need to be up front about why. I'm not happy about talking about all of it, hell, my life is tied up in trying not to dwell on it -- but I know people will need to understand why I need it. I don't want them thinking I'm looking at buying a boat or something.

FWIW, we resorted to playing the lottery a couple times a month *before* talking about trying to look to BP for relief. :-P

 

[Buckeyeskickbuttocks]

Also, I just want to say that I'm not trying to present all of this as some "woe is me" tale, nor am I trying to play any of it up to provoke sympathy, charity, etc. It's just that I'm openly saying in advance that I need to at least try and get some money back out of BP, and I know that I need to be up front about why. I'm not happy about talking about all of it, hell, my life is tied up in trying not to dwell on it -- but I know people will need to understand why I need it. I don't want them thinking I'm looking at buying a boat or something.

FWIW, we resorted to playing the lottery a couple times a month *before* talking about trying to look to BP for relief. :-P

Are you kidding? It is well understood, Clar... I can't say I know you, but I know you well enough to know you're not looking for sympathy for the sake of sympathy.

Far as I'm concerned, you are entitled to exactly whatever you can get out of this site, and you need not make any excuse to me about anything. I don't know about anyone else, but I'm pretty sure they feel the same way.

BTW, if you do buy a boat, admins and mods better be on the short list for the first BP sea party.

 

[LoKyBuckeye]

Clarity... like BKB stated, I think everyone here understands. The most important thing here is you and Jo and there's nothing wrong with that.

and if the boat idea pans out... I want to be first mate

 

[Clarity]

Okay good, I just wanted to broach the whole boat idea. Let's not underestimate the convenience of one with a helo pad.

 

[BrutuStrength]

Clarity, that is truley amazing stuff. I don't feel as though I can adequately describe the way I feel at this time regarding your treatment and being stuck in perpetual limbo amonog the medical community due to an absent diagnosis.

1 thought that I just had while reading some of the other comments regarding possible affiliation with a show that might help, I'd think that the Extreme Makeover Home Addition would seem to be the best to try. They do some amazing stuff with the houses, and often find ways to get some money for people in need, as well. Would someone be willing to write a letter to the show recommending Will and Jo for a home makeover? C-dog's certainly provided a ton of info that would have to get someone's attention over there. Maybe we should just copy and paste the entire text and send it to them.

 

[ScarletInMyVeins]

Not a bad idea. I think that we would need Clarity's approval before moving forward with something like that. One other thing that just came to mind is usually they make over delapidated homes on that show and the home that Clarity lives in now (if he's still on gradey pass) is a fairly new home that should still be in good shape. I don't know if that would matter to the producers or not.