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01-30-2008, 04:39 AM   #1
drew_wymore
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Frustrated

Hey Guys,
I'm so frustrated right now that I feel I'm almost at my breaking point. I've ostensibly been fighting a crohns flare for a year now. The history is such that I started developing symptoms in January of 2007. Thinking I was just battling the flu I put it off until May of 2007 before I started receiving diagnosis and treatment. I feel like right now its never going to get under control so I can just be *normal*, hell I feel like I don't know what normal is anymore.

I spoke to my doctor's nurse today finally after trying to reach him for the last week. I had relayed my concerns last week that after 2 weeks of pred and azathioprine I still was feeling shitty and developing new symptoms. I expected that he'd call me back, turns out after 5 calls to the office I finally get an answer today, he's having me come in tomorrow to discuss options and how to move forward. I've been seeing this guy since August and it seems like we're moving at a snails pace. And I get the feeling he's tired of dealing with me. The last time he ignored my calls to his office I ended up with a small bowel obstruction and a 5 day hospital stay

I think we as a group are probably more intune with our bodies and health then "healthy" people so to speak so I get angry when he doesn't respond. I've never raised a call to him without it being something that needed to be addressed.

On top of having to chase my GI down, I've been on disability since June of last year. That has been an absolute effing nightmare. The HR department at my work treats me like a leper because I've raised hell about getting paid. They outsource the disability insurance administration and that company has done nothing but try and make my life hell. Form after form, and they somehow "lost" my apartment number so my checks weren't being delivered to me promptly yet I was blamed for it. My doctor still won't release me back to work so now I'm entering long term disability territory and my wages are being cut back to 60% of my base yearly pay. Because of that I'm having to move out of my place and back in with my parents. I wouldn't complain but I'm 29 years old and its a bit of a hit to the ego to have to be moving back in with your parents at that age you know? What makes that even tougher is that nobody seems to understand that! Its as if I'm losing my independence.

Blah
01-30-2008, 05:53 AM   #2
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hi drew..

i can imagine how frustrated and fed up you are

as you're going to see the doc tomorrow, it might be an idea if you asked him how to get quick advice and support in between appointment times, particularly when you have a worrying symptom.

for the first time ever, i have recently been given the mobile phone number to the clinic nurse, so even if the clinic isn't running at the time i ring, i can speak to her directly, and she points me in the right direction. we also have an extra 'flare up' clinic for patients with urgent problems which runs once a week, and anyone can be given an appointment even if its a last-minute phone call. these provisions have made such a difference to me, and like you say - we dont abuse the system, but its good to know its there when we need. there may well be something similar in your hospital. i would also mention that this feeling of being left alone with problems & worries is stressful, which we all know is bad for crohns sufferers.

re your point about going back to live with your parents, i really do understand how you feel. i'd just got married and had my first home of my own when i had my major surgery years back. because i'd been in hospital so long, and had such bad complications, it was part of the deal that they would only let me out if i had someone with me 24/7. as my new husband worked full time, i had no choice but to go home to my parents. as it turned out, this worked fantastically for me, they looked after me wonderfully and i was soon back on my feet and recovered well under their care (and my mum's great cooking ). but i did miss my little flat, and my independence. if you have to go back home, hopefully it wont be for too long, just until you're more stable with your health & meds.

good luck drew, and let us know how you get on.
01-30-2008, 06:55 PM   #3
butt-eze
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Drew It's sounds like you need to find a better doctor. Does your insurance allow you to see whoever you want? I can get you the name of a wonderful doc up here in Seattle (let me know!)

I know that there isn't much we can say to make you feel better about living with your parents. However, I would look at it as an opportunity to take advantage of the situation. You need to focus on not stressing over money and the hassels that you're getting from your job. Stress is not going to help you into remission.

Let us know what happens.
01-30-2008, 07:57 PM   #4
Kev
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Yeah, Drew, I'd echo the sentiments of everyone else. It seems as if your current dr situation is less than desirable. If stuck with it, then you have my sympathy. If you can switch, shop around, ask around, till you can find someone who will be in there pitching for you when you need it. My current GI is great, but she is human too. Gone on two maternity leaves on me already (the nerve).. However, while on those... she arranged both to get me into a GI clinic program where I dealt with great GI's and very wonderful nurse practictioners, AND had me seen by another GI and internal med. specialist. the GI clinic was (is) a wonderful resource... My GI's leave turned into a godsend. I went thru some other doc's who weren't so wonderful. This could turn into the same like godsend for you as well. The other point... how this impacts money, or work.. Three years ago, I was earning in the 6 figures. Thanks to my health that is all gone, and there's no hope it will ever come back. I had to economize and cut back. Gave up a lot of materialistic things, simplified my life, and the bs that went with the upwardly mobile yuppie/preppie lifestyle. The beauty of it is that my much simpler life is just that, much simpler... and more rewarding. That 'baggage' one carries with one, picked up in little pieces over the years, weighs one down... often w/o us realizing it. Whether your stay with your parents (as a parent, I can assure you it's no imposition) is long or short term, once you're back on your feet, out on your own, think you'll find the simple life is really nice.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
01-30-2008, 11:56 PM   #5
D Bergy
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I trade doctors like baseball cards. If the doctor is not meeting your needs, feel free to find another one. We pay them too much to stick with one that is not doing the job. We are their customers.

Dan Bergman
01-31-2008, 12:40 AM   #6
Sojourn
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I understand where you're at in regards to living with your parents. I had a thread awhile back where I was agonizing over whether or not to move back in with my parents so I could go back to college and finish. They were offering to pay my tuition, but not housing, so I'd have to live with them. In the end, though, I couldn't find a part-time job that would keep me insured so I didn't have to make the decision. But I don't think I would have done it anyway. I was 37 at the time and it just felt really weird. But I did stay there for 2 months after my first surgery, and if I needed to I'm thankful I have a place to go if things ever get bad again.

In a way it's kind of relaxing not having to worry about keeping up with everything that goes with looking after a home or apartment. Of course I helped out with things, but mostly I was on the internet, reading, or watching movies. It was kind of like a vacation in a way. Yet all the while I was worried about my future or what would come next which was difficult.
02-01-2008, 08:21 PM   #7
drew_wymore
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I'm starting to slowly warm to the idea of moving in with the parents. It will definitely be a burden off my shoulders having to maintain a household.

@Kev .. Fortunately I already enjoy the smaller things in life. I did for awhile get into the fast lane yuppie life and it just wasn't worth it for me. I walked away from a well paying job and stock in order to lead a lower key life even before I got ill and I don't regret it for a second.

One thing i have learned since becoming ill is that I appreciate even smaller things in life that I used to take for granted like driving. Its refreshing when I've been cooped up for a few days to get out and behind the wheel and just drive around listening to my radio.
02-01-2008, 09:05 PM   #8
D Bergy
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I love to just drive my project car around, going no particular place. It is very relaxing and enjoyable. I only have an AM radio, so I listen to the clack, clack, clack, of the solid lifters.

Can't wait for summer.

Dan
02-02-2008, 01:05 AM   #9
drew_wymore
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D Bergy said:
I love to just drive my project car around, going no particular place. It is very relaxing and enjoyable. I only have an AM radio, so I listen to the clack, clack, clack, of the solid lifters.

Can't wait for summer.

Dan
I can't wait for the summer either. Just jump in the car pop on the satellite radio and open up the sun roof.
02-02-2008, 12:47 PM   #10
Kev
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Summer driving + radio = relaxing. Winter driving + black ice = exhilerating (sp?)

One of the aspects of being a PI is the enjoyment of driving. Of following a person for often hundreds of kilometers without knowing beforehand where they're going. course, the really nice part is being paid for it, mileage included.
At the current cost of gas, I think the Sunday afternoon car trip is going the way of the dodo. When I 1st got my license, gas cost .39 cents an Imp gallon
(US gallon = 128 ounces, imp gallon = 160 ounces. Currently here, a US gallon costs about $6.70 And people wonder why our American tourists have stopped coming.... course, in those days, a 401 cu in engine with 4 barrel holley got about 13 mi to a gallon
02-02-2008, 01:33 PM   #11
katiesue1506
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gas is relatively low where I am... $2.88 a US gallon... although wait a day or two and it'll be 20 cents more.
02-02-2008, 09:02 PM   #12
Sojourn
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A gallon for $6.70? I see how they're paying for your healthcare up there.

Getting in my car was one of the first things I did after surgery. Of course that was to get out of my parents house to smoke a cigarette also.
02-03-2008, 01:36 PM   #13
Kev
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Actually, the tax revenues from gas purportedly don't go into health care. They are divided up between the various levels of government... squirreled away w/o us in the rank N file knowing 'exactly' where the money goes... supposedly, some of it goes to maintaining our roads (yeah, tell me a story mommy).. some exploration, some for renewable resources, some for environmental purposes (what's kiyoto accord, Daddy, a new car from Japan?)
Fact of the matter is that over 50% (getting close to 60) of the cost is taxes to one level of government or the other... then more of the pie is eaten up with fees the governments charge the suppliers, the distributors and the retailers. (but somehow they distinguish those from taxes, tho I don't see a difference),
and the rest of the cost is the actual cost, plus the supply chain link markups. I only know that it COULD cost $4.00 + less a gallon if it weren't for those taxes.

The only salvation is my 4 door sedan now gets 42 miles to the gallon highway
02-09-2008, 06:33 AM   #14
drew_wymore
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Well things are improving I think. I talked to my GI earlier in the week and he upped my pred to 60mg and Imuran to 100mg. He followed up a couple days after the increases and was cursing since its working, he's just so damn frustrated.

I had the capsule endoscopy (pill cam) on friday and it doesn't appear that its stuck as far as I can tell, I feel ok. I'm told I should have a followup call monday with the results. I'm praying it'll show us the ghost we've been trying to chase down for a year now.
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