I Got a Little Chastized...

[neonlyte]

Ok... a lot chastized. So here's the score.

A few weeks ago I was prescribed anti-depressants as way to relieve the mental pressure stemming from physical illness. I decided not to take them... which was probably a mistake.

I argued (to myself - I think I was the only one listening) that as the 'medicine' wasn't going to change my physical state, just how was taking the tablets going to make me feel better? A hey... guess what... things got worse, not physically but mentally.

So I got a bollocking from a friend who is a respected psychotherapist, she's arranging for me to see a colleague in London.

I got a bollocking from my doctor for not taking the medicine and from my wife, who amusingly - probably the wrong word - threaten to leave me if I didn't start taking the tablets. She laid out this threat at the top her voice while we waited to cross Shaftsbury Avenue in the centre of London just after lunch on Tuesday. I guess it was amusing as lots of people seemed to be laughing... but that might have been an illusion.

We'd just come from the Tropical Disease Hospital where I'd had a thorough check-up confirmng there was nothing apparently physically wrong with me... that is until I fell off the examination couch trying to put my socks back on. So we are back to square one - Lyme Disease confirmed, no more anti-biotics until systemic checks completed on all my major organs, lumber puncture tests, more brain scans and spinal scans. In the mean time, I get to see a whole new bunch of Neurologists at London's prestigious neurological college.

Yesterday was spent with a lawyer going through paperwork necessary to commence legal proceedings against the first neurologist for not treating me with anti-biotics when he first suspected Lyme Disease. (We've now received paperwork from my Medical Insurers confirming he wrote 'probable Lyme Disease' on the insurance papers when I first saw him in October 2005. He decided against all medical advice to the contrary that it didn't require treating). At the end of a three hour meeting with the lawyer I was too weak to stand up, took about twenty minutes to recover... much to my embarrassment, my wife's tears and a sheepish lawyer who kept apologising for having kept me so long.

So I now have two sets of legal action in progress. The first against a Father I haven't seen for thirty years for exposing me to asbestos and the second as outlined above.

I got very mildly chastized by a AH friend yesterday for not 'coming clean' about what is going on. I told her I felt I was complaining too much and didn't really feel like explaining. On reflection, this might be the best place to let off steam - so excuse me if I explode from time to time and bear with me while I try to fight my way through this mess.

Needless to say, I'm not making much progress with the writing and I could seriously use a good kick in the backside from time to time.

Will

 

[SensualCealy]

Will, accept this as a kick in the backside!

Now get on with it!!!

I to am dealing with an issue that the Drs have no clue as to what it is.
My Aunt who has passed away started having balance problems back, oh maybe 25-30 yrs ago, so long to the point I don't remember her not walking with a cane.
Eventually she ended up in a wheel chair with speach problems as well.

So, about 20-23 yrs ago, my Dad started with the balance problems, he too ended up walking with canes and now uses a walker with every step he takes. His slurred speach is getting worse, and with everything else he had a mild stroke in the early spring.

Now about 6 years ago I started having the same balance problems. I would go to get up from the couch and topple off balance, or I would be walking down the street and end up hugging a garbage can so I wouldn't fall over. It doesn't happen all the time, but usually if I am extremely tired. I tell my family Dr. what symptoms I have and he sends me to a neurologist. After a couple visits with him and discussing both my aunt and my dad with him he tells me that there was a concentration of MS patients in the Eastern Townships of Quebec and maybe there is a link there since my dad's family lived throughout that area.

After a few phone calls he came up empty handed. I had an MRI, and nope I don't have MS what they first diagnosed it as. So then I start having more episodes and get increasingly scared that I am going to pass these genes on to my kids. Well, my neurologist has taken a savatical (sp) so I am sent to the MS clinic to be assessed. They too agree it isn't MS, and after speaking with two seperate Drs. They decide on Episodic Ataxia -Type One.

They ask if I would like to be included in a study on this particular strain, sure why not!

Another appointment with a Dr that keeps me waiting two hours before I get to spend 15 mins with her to be told, NOPE YOU DONT HAVE THAT EITHER! WTF!!!

So I am basically back to square one! My Dad has been refered back to this last dr to have genetic testing done. They want to compare his testing with mine to see what it is that we carry that is similar to see if they can figure out what the heck we have.

Until then, I live every day as though I have had a few drinks, without the feeling of having to throw up! lol Only problem is, if I ever get pulled over and have to do a sobriety test, Im screwed! lol

I wish you all the luck in the world and if you ever need an ear to gripe into, Im here!
C

 

[English Lady]

Will, I won't kick you in the backside but I will give you a great big hug.

I'm so sorry that you're going through all this crap, you're a lovely gentleman who always brings a smile to my face.

I hope you're being a good boy now and taking the meicine you need to take - wives should not be crossed

Seriously, you're in my prayers, always.

and *squeeze*

 

[Roxanne Appleby]

It's so unfair that this has happened to such a good and accomplished person. That's undoubtedly a totally unhelpful thing to say, but so be it.

No kick in backside from me, but I am chuckling at your healthy attitude to having been properly bollocked on the meds thing, and description of same.

All the best to you and yours.

 

[3113]

So I got a bollocking from a friend who is a respected psychotherapist, she's arranging for me to see a colleague in London.

I got a bollocking from my doctor for not taking the medicine and from my wife

Somehow, it all sounds much less harrowing when you use the word "bollocking."

 

[rgraham666]

Sending strength and positive vibes your way, Will.

Take care.

 

[MagicaPractica]

No kicks available. Only you can decide if the pills are going to help but this is a pretty harsh disease to deal with, particularly under the circumstances you've been subjected to so maybe they'd be worth a try?

I think I've said this before but - I found Amy Tan's story about trying to write while living with the afteraffects of untreated Lyme Disease very inspirational. Write whenever you feel up to it. {{{{hugs}}}} And sometimes when you don't feel like it, it might help you feel a little better mentally if not physically.

 

[neonlyte]

Will, accept this as a kick in the backside!

Now get on with it!!!

I to am dealing with an issue that the Drs have no clue as to what it is.
My Aunt who has passed away started having balance problems back, oh maybe 25-30 yrs ago, so long to the point I don't remember her not walking with a cane.
Eventually she ended up in a wheel chair with speach problems as well.

So, about 20-23 yrs ago, my Dad started with the balance problems, he too ended up walking with canes and now uses a walker with every step he takes. His slurred speach is getting worse, and with everything else he had a mild stroke in the early spring.

Now about 6 years ago I started having the same balance problems. I would go to get up from the couch and topple off balance, or I would be walking down the street and end up hugging a garbage can so I wouldn't fall over. It doesn't happen all the time, but usually if I am extremely tired. I tell my family Dr. what symptoms I have and he sends me to a neurologist. After a couple visits with him and discussing both my aunt and my dad with him he tells me that there was a concentration of MS patients in the Eastern Townships of Quebec and maybe there is a link there since my dad's family lived throughout that area.

After a few phone calls he came up empty handed. I had an MRI, and nope I don't have MS what they first diagnosed it as. So then I start having more episodes and get increasingly scared that I am going to pass these genes on to my kids. Well, my neurologist has taken a savatical (sp) so I am sent to the MS clinic to be assessed. They too agree it isn't MS, and after speaking with two seperate Drs. They decide on Episodic Ataxia -Type One.

They ask if I would like to be included in a study on this particular strain, sure why not!

Another appointment with a Dr that keeps me waiting two hours before I get to spend 15 mins with her to be told, NOPE YOU DONT HAVE THAT EITHER! WTF!!!

So I am basically back to square one! My Dad has been refered back to this last dr to have genetic testing done. They want to compare his testing with mine to see what it is that we carry that is similar to see if they can figure out what the heck we have.

Until then, I live every day as though I have had a few drinks, without the feeling of having to throw up! lol Only problem is, if I ever get pulled over and have to do a sobriety test, Im screwed! lol

I wish you all the luck in the world and if you ever need an ear to gripe into, Im here!
C

I really feel for you, and your family. The slow degenerative illness is horrendous to cope with, more so when you (and the medical profession) have no idea of cause. The 'drunk staggering' I understand only too well, I'm getting used to people stepping round me on the street - though I can't quite used to the glances that assume I'm drunk at 9.00 in the morning.

I grow increasingly astonished by the arrogance of the medical profession and the empirical criteria by which they measure illness, their unwillingness to accept clinical evidence - unless in the form of a rash, spots or missing limb - undermines patient confidence and, ultimately, the patient / doctor relationship. Before I fell off the couch, I delicately probed the Dr for an opinion on whether I ought have received antibiotics earlier, he demured, wasn't willing to criticise a colleague yet he treated me promptly when I was referred to him, if a year late. After I'd fallen off the couch he became a little more sympathetic agreeing early treatment reduced the risk of long term damage. Do I really have to fall off couches to get people to take my illness seriously?

The best thing about a typed response forum is others can't hear our slurred speech

Thanks for the 'backside kicks', and support. Your encouragement is important to me, SC, and all who post who can use the good wishes of our community to overcome obstacles laid to test resolve.

 

[neonlyte]

No kicks available. Only you can decide if the pills are going to help but this is a pretty harsh disease to deal with, particularly under the circumstances you've been subjected to so maybe they'd be worth a try?

I think I've said this before but - I found Amy Tan's story about trying to write while living with the afteraffects of untreated Lyme Disease very inspirational. Write whenever you feel up to it. {{{{hugs}}}} And sometimes when you don't feel like it, it might help you feel a little better mentally if not physically.

I started the tablets today - supposed to take a couple of weeks before I notice any change... we will see.

The Amy Tan experience is as you say inspirational, I have her book my my bedside. I really ought read it again just to remind me it is a tunnel with lights in the middle as well as at the end.

 

[SensualCealy]

I really feel for you, and your family. The slow degenerative illness is horrendous to cope with, more so when you (and the medical profession) have no idea of cause. The 'drunk staggering' I understand only too well, I'm getting used to people stepping round me on the street - though I can't quite used to the glances that assume I'm drunk at 9.00 in the morning.

I grow increasingly astonished by the arrogance of the medical profession and the empirical criteria by which they measure illness, their unwillingness to accept clinical evidence - unless in the form of a rash, spots or missing limb - undermines patient confidence and, ultimately, the patient / doctor relationship. Before I fell off the couch, I delicately probed the Dr for an opinion on whether I ought have received antibiotics earlier, he demured, wasn't willing to criticise a colleague yet he treated me promptly when I was referred to him, if a year late. After I'd fallen off the couch he became a little more sympathetic agreeing early treatment reduced the risk of long term damage. Do I really have to fall off couches to get people to take my illness seriously?

The best thing about a typed response forum is others can't hear our slurred speech

Thanks for the 'backside kicks', and support. Your encouragement is important to me, SC, and all who post who can use the good wishes of our community to overcome obstacles laid to test resolve.

We are two peas in a pod so to speak (without the slurs).
My whole issue is to find out wtf I have before my kids are in their mid 30's and start to show symptoms.

It seems the Drs figure so long as I can live with it, why worry!
Would I pay $9 to park in their parking lot, drive 45 minutes out of town only to drive another 45 minutes back to town every 6 months just because? Hell no, I want answers, if they cant find them, then what the fuck are they doing practicing medicine?

I did get answers from two of the most interesting interns I have ever spoken to. Both working within the MS field listened to yet another randition of my symptoms kick starting some questions for my family Dr.
1. Why hasn't he ordered tests for your IBS~ no formal evaluation, just guessed.
2. Why hasn't he ordered tests to see if you have Celiacs Disease? No clue, he is an idiot.
3. Why did he not run the 30 different blood tests that the other hospital did so they would have the info first hand instead of running them and wasting more time?

Thousands of dollars spent to send these guys and gals to school, so why is it only the ones who just start out are the ones interested in 'fixing' the problem?

May be rambling, but hey, its my choice, no one can hear me slur! lol
C

 

[galaxygoddess]

Ugh, where do I start?


Ok, since I was really little I've developed a general distrust and paranoia of all doctors because of how they would always loose my shot records and force me to get all my shots again and when mom argued with them that I'd had my shots recently, they'd threaten her with DHR!

So yeah, hysterics abund everytime I go to the doctor because i just KNOW I'm getting shots... mostly useless, will make me more sick, shots.

I'm also horribly notorius about taking medications. The CLOSEST thing to medication I will take is flintstones vitamins (and they HAVE to be fruity chewy vitamins!) Tylenol? Advil? nope, nada, the ONLY time I will take something that's ACTUALLY considered a medicine is the godsend "midol"

Well, I'm anemic, and I have a heart problem I can't pronounce, diverticulitus, and so much other things wrong with me that haven't been diagnosed, but I'm so paranoid of doctors I refuse to get myself checked or take a damn thing they give me!

My mom was the same way...

she has seizures, she has a couple of inoperate (mostly benign) brain tumors, and she adapts to her medication so quickly they're constantly having to up or change it. Like she said, she's the ginea pig for all new nedications, if you're trying it, she probably already has! But for the longest we had to chase her down with her seizure medication, she just wouldn't take it! Now that she can't function without it, she's a lot better about it, but still tries to skim.

There is one seizure medication (I'll get the name of) that she found out is REALLY dangerous, she started taking it, and her hair started falling out, she lost sight in her eyes, and a few other things. She said "If my choices are not having a seizure, or not being able to see, I'd rather see!" she stopped taking the medicine and her hair started growing back in and she could see again.




So more evidence that medications are evil and should be avoided >.>

the problem is, with that one pill, she didn't suffer any permanet affects, so she can't sue over it.

I can't prove the hell I had to go through as a kid with the shots, so I can't sue.



Do you SEE why I have a distrust in medications and doctors??

Chastise me all day long, I don't care... I fear for my safety!

 

[Stella_Omega]

Aw, Neon, I feel for you!

For years and years, I suffered from chronic fatigue. I was diagnosed as hypothyroid (low) and went on replacement therapy, which helped-- but not entirely.

Then last December, I went on anti-depressants, and for the first time in years, I am not fatigued. The physical pain in my hands and legs, numb lips-- all gone.

I used to have headaches pretty regularly, the kind that immobilise you-- I think I've had two, since December!

Smooches to you, and take your meds!

 

[MagicaPractica]

I started the tablets today - supposed to take a couple of weeks before I notice any change... we will see.

The Amy Tan experience is as you say inspirational, I have her book my my bedside. I really ought read it again just to remind me it is a tunnel with lights in the middle as well as at the end.

You might be surprised. I take a medication that takes two weeks to work up to full effect but I can feel the change after just three days.

 

[Stella_Omega]

*someone* just PM'd me asking more about the antidepressant that I take. I'm not shy, and maybe someone else would want to know, so here's my reply to them;

I take Welbutrin.

Omigod, it was a magic bullet for me. I felt the fatigue lift, about one week into taking the stuff.

I am also in therapy for depression-- probably as a result of so many years of hypothyroidism-- and have a psychiatrist moderating me.

A few months ago I said that I felt that, although the Welbutrin had helped with my mood, I was still scattered, to the point that I asked for ADD screening. He added 50mgs of Zoloft, and now I take three pills each morning, including the thyroid... It's working quite well.

 

[jomar]

Much support to you. I hope you are surprised in that the meds work quickly. On the other hand, antidepressants can take up to four weeks to take effect.

 

[CrimsonMaiden]

*hugs* Will. You're in my thoughts often.

 

[galaxygoddess]

I will warn that wellbutrin is not for everyone.


wow I just sounded like a commercial.


Both my brother and my husband have taken that and it just made then crazy(er).

Mom tried it and it had no effect one way or another.

So check with your doctor before.. blah blah blah, you've heard the commercials

 

[Guest]

Sending love and strength to everyone dealing with medical issues.

We're thinking about you.

 

[Stella_Omega]

I will warn that wellbutrin is not for everyone.


wow I just sounded like a commercial.


Both my brother and my husband have taken that and it just made then crazy(er).

Mom tried it and it had no effect one way or another.

So check with your doctor before.. blah blah blah, you've heard the commercials

It's... speedy stuff, for sure!

 

[ChilledVodkaIV]

Karel paused with his knuckles raised, ready to rap out a summons on the freshly painted door.

The raggedy boy on the poorly lit landing stared at him. The boy with the badly cut hair and an open shirt sleeve revealing the pimples that dotted his forearm that always came with measles.

He blinked and the boy was gone. Karel blinked again and his eyes adjusted to the poor light so that he could make out plainly the dark stain in the threadbare carpet. He squinted and a ready image, somewhat blurred formed before his gaze.

He opened his eyes and let them glaze, unfocussing and there was the raggedy boy. His dark features; a faded carpet pattern, his arm; a slant of light from a partly opened door down the hall and the measles; a very light sprinkling of sugar from home brought grocery shopping.

Karel lowered his arm and walked away.

 

[Just-Legal]

We all know what's been going on with me. *sighs* Its taken THIRTEEN YEARS to diagnose me with Polycystic Ovary Syndrome and Endometriosis. I won't go into the rant, but to say I was pissed is putting it mildly. I've been misdiagnosed, told I'm imagining it, that I'm a hypochondriac... *shakes head*

So you have my utter sympathy love *hugs*

 

[cloudy]

Will, please take of yourself.

I've yet to see you whine, or even really complain. I wish I could deal with a horrible situation as well as you do.

We're here if you need us; I hope you know that.

 

[mismused]

delete

 

[neonlyte]

So . . .

Whatever you got chastized for, and seeing as your wife lit into you too, uh . . . did you resolve whatever might have been the cause of said chastizement yet? Hmmmm? Or are you one of those that require "reminders?"

Hope all works out for you and yours.

m

PS: I'm with the wifey - take the damned meds. <*Men! Sheesh!*>

Yeh... I've started taking the tablets Thank you, m, for pestering me, it was a wake-up call I needed.


I suppose taking the tablets is tantamount to an admission that I need help in managing my mental attitude. It is difficult to know if the anger is a manifestation of neurological infection, or 'plain vanilla anger' at being placed in this position by so called experts. The point being that I can accomplish a lot without physically stretching myself. Sitting writing (and reading) is perfectly within my grasp and possibly 'my anger' was stopping me from accepting there are things I can do and achieve though not necessarily the entire range of things I might previously have enjoyed.

There is also the question of 'Fear'. SensualCealy expresses it, so does john-the-author on another thread, and fear is a huge inhibitor to positive thought. It is difficult to step around, it is hard to ignore and it reaches out in the dead of night to tap you on the shoulder reminding you of its presence and reflects of the faces of those close and dear.

I have a terrible fear of further degeneration, both physical and mental. I have sought to hide from that by turning inward, away from friends certainly, and it becomes difficult to share that fear with family since they already are burdened by their own anxieties over my, or any loved ones condition. That plainly doesn't work. Bottling up fear only heads for an explosion, pretending deludes no one except yourself.

Thanks.

 

[English Lady]

I have a terrible fear of further degeneration, both physical and mental. I have sought to hide from that by turning inward, away from friends certainly, and it becomes difficult to share that fear with family since they already are burdened by their own anxieties over my, or any loved ones condition. That plainly doesn't work. Bottling up fear only heads for an explosion, pretending deludes no one except yourself.

Thanks.

Bingo. I'm glad you've gotten a little enlightenment and I hope that brings you some peace.