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jddh

How To Wait & Not Be Miserable

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Hi friends,
 
TL;DR: please share coping strategies for waiting for tests & diagnosis.
 
I'm actually well past initial diagnosis, but my symptoms are flaring up again years later despite a strict gluten-free diet. Could be the drawn-out result of an unfortunate string of gluten mistakes last month, could be any number of other exciting GI problems that take a while to diagnose.
 
Like many of you, I am wiling away the days/weeks between appointments, waiting for test results, waiting for more tests to be performed, possibly waiting for MONTHS before seeing a proper GI specialist again. Trying to work, trying to have fun; instead mostly worrying. Losing pounds off a slight frame that can't afford weight loss. Feeling stressed, depressed, very sad.
 
My symptoms suck, but the waiting is unquestionably the worst part. The internet is a wonderful source of information, but Googling the litany of consequences and risks of diseases and vague symptoms is terribly concerning.
 
I know better than to seriously believe what I read without a specific diagnosis, but I can nonetheless easily obsess over these details, thinking about all sorts of "what ifs" that can only make my poor gut feel worse.
 
Can anyone share positive experience about things to do, read or think while playing the waiting game? Any essential books or videos? Healthy ways to focus on getting better?
 
Your thoughts would be much appreciated. I know that this "waiting game" is something we probably all share across the network.
 
BONUS POINTS: Any success stories in getting through the system faster? I am in the habit of calling the offices of my tests/referrals every few days, checking for cancellations, saying "I can be there in 15 minutes," etc. I just talked to a friend who took his laptop and camped out in his GI referral's waiting room until he got an appointment. Considering doing that. But I don't want to piss anyone off to the point of making my wait potentially longer.
 
Thanks for your time.

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Yeah, you do not want to upset any staff members just showing up, but I did that once.

My daughter had an allergic reaction to meds on a Monday morning. I had two choices: go to ER (pay more, possibly catch the flu, long wait) or see a doctor in our practice. I went at 7:30 when a few doctors get in early. The appointment desk does not accept phone calls until 9:00 am. The best appointment, at 7:30 I could get was 11:00 am. I thanked the receptionist and told her that I would feel safer waiting there until 11:00. She felt sorry for us and we were promptly seen by a doctor. I do not want you to think that I was willing to risk my kid's life to save a buck. I took this chance since my doctor's office is right across the street from the hospital.

So, you never know.

If you suspect your GB, try eating less fat, soups, and pre-ground food. That might help. Or eat a huge serving of rack of lamb, pass out, ride in an ambulance, ask for a HIDA in ER since you know you are having another GB attack that never shows up on an ultrasound or later during a follow-up visit, and ask for a GI/surgical consult. Then have the surgery since you are already there! Helps if you are on a business trip in Las Vegas too! Ha!

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Hi jddh.

 

I'll tell you about my last 3 years and how I got thru it.  Almost 3 years ago I got my Celiac diagnosis.  Before that I had around 15 years of very poor health, lots of meds and lots of Dr. appts.  and lots of lost time just trying to survive day to day.   I was feeling pretty decent after I went gluten-free and was completely thrilled to know what was wrong and it made the healing time so much better because I was getting healthy and not getting worse.  Then six months after going gluten-free I was diagnosed with Cancer.  Of course, I was crushed.  I was finally getting a grip on my health and then wham.  This is when I learned some serious coping skills.  First thing I did was accept that this is what I have to work with so no use b%$@#ing about it.  Only I can make (informed) appropriate decisions for ME.  I really dug into "Mindfullness" and I suggest you look into this too.  There is alot of info on the net about it.  Basically, it makes you pay attention to the here and now, focuses you.  I also use bi-neural beats.  This can help you get into different states of consciousness, it brings you brain into a theta pattern or other patterns as you choose.  It can induce relaxation, focus, sleep, etc.  I also learned about CBT (Cognitive Behavioral Thinking)  You can also learn about this on the web but I did this with my Therapist.  I have Bi-Polar Disorder so I am very prone to deep depressions.  I had to get permission from my Psychiatrist to start a Clinical Trial for the cancer treatment.  We were extremely careful to keep me stable thru the whole process.  I have also relied heavily on my friends to vent, share news (good and bad) and that can never be replaced.  I have also learned a very valuable lesson.  Each day gives you the opportunity to live it the way you choose!  If you feel miserable, Be thankful your not dead.  If you feel great, hold on to that feeling and be grateful for a good day.  Pretty soon you will have more good days then bad.  After some time you will realize that you are actually living life again and not worrying about the small stuff.  Every Morning I go out on my porch and listen to the sounds of the birds, feel the breeze on my skin and enjoy the sun on my face !  THAT is living !  Remember, all that your going thru now is temporary.  

 

Good Luck to you.

 

Colleen

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@cyclinglady: makes a lot of sense to me. I often consider emergency but like you I'd sure rather not spend hours or days in their waiting room. Sure to be much more depressing. And despite the fact that I'm feeling ill and losing weight, I know that my symptoms don't stack up in triage to those who are there for this-minute emergencies. Which is fair.
 
Colleen: really lovely ideas. Thank you for taking the time to share. 
 
I also find CBT very useful, particularly reframing warped thoughts about MIGHT happen to me, or what COULD be wrong, as opposed to what I actually know or how I'm actually feeling, which is much less scary.

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So glad you know about CBT and it worked.  Do try the others.  For bineural beats.  There are apps you can find and make sure you use stereo head phones.  

 

Colleen

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Happy Friday JD!

Like anything else you can learn to find joy while dealing with our - ever so not helpful - healthcare system. It helps to learn all you can about possible conditions. It is not fair that we have to understand more than many doctors do about autoimmune conditions, but if symptoms do not improve after 3-6 months gluten-free, it becomes that much more important to understand all possible related conditions that fit your symptoms.

I was no where near as patient during the years that led up to my diagnosis and then when I didn't improve by completely removing gluten...my whole family was devastated that the answer might be a bit more complex...after all I'd been going to docs for 25 years with the same symptoms that progressively got worse until I had several horrific years while every flipping test came back normal...ugh. I now know the correct tests were never ordered because none of my doctors thought to order them. For each and every doctor appt for myself or family members (gone to a few appts with close friends too) I am armed with a written list of tests I want and why along with a clear list of symptoms I want the doctor to consider.

As for fast forwards...it depends on the doctor's staff. I have got all of my family including aging parents bumped often. First always try to sound calm and get them to laugh or smile if at all possible. Second, ask the front office if you can speak to the medical assistant or advice nurse for the doc you are trying to see. This can go three ways, possibly four: magically there is a spot/cancellation the same or next day close to the doc's lunch hour, you get transferred to someone that has the doctor's ear or their VM (at this point you are usually a bit frustrated so try to keep the calm and humor coming) or you are told no. If you are told no....wait and call again. If you called first thing when they opened, try just before lunch or mid afternoon.

Hang in there...do something every day that makes you laugh out loud or at least smirk at the irony all around ;)

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Thanks for the great ideas Lisa. Trouble I'm finding with reading up is that there's so very many sources, not all of which I'm certain should be trusted. But I'm finding/assuming that NIH-related sites and Mayo clinic tend to be reliable.

 

Upshot of my doctor leaving for a month vacation is that I'm being bumped to a rapid-access internal medicine clinic at the hospital. First visit tomorrow morning...hopefully less waiting from here!

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That clinic was kind of a bust; I posted about it here if you care to read some whinging :)
 
But here's a real question: getting good sleep. I was enjoying popping an ativan before bed every few evenings to chill out after an anxious day & get a smooth, uninterrupted sleep. But I'm finding that if I do that for two consecutive nights, the following night will be sleepless and anxious if I cease the dose. Pretty strong rebound effect, I guess. Plus, the internet tells me that benzos don't necessarily put me in a productive sleep state.
 
Does anyone have some better methods? I'm considering a 10mg timed-release melatonin. Ought to be easier on my system, though not for prolonged use either, of course.

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Benzos won't work for sleep as you read.  One med you might want to look into is Trazadone.  It's what I have taken for half my like due to chronic insomnia.  Ambian is a consideration but is addictive and can only be used for a few nights, then a few off.  Can have other bad effects also.

 

Melatonin and Valarian Root together at night may work somewhat if your sleep clock is off.  

 

That's all I have to offer on this one.  Good Luck finding something that will work for you.

 

Colleen

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Thanks again Colleen—good thought about valarium. Would be nice to not stack too many meds.

Doc gave me zopiclone, which is in the umbrella of ambien. A band aid. Also considering mirtazapine, which falls more under the trazadone category. Maybe good for pulling up weight too.

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Until four months ago I lived in Alberta and can empathize with you and your plight.  Waiting is always difficult, especially in Canada, where waits are many months long and feeling like an eternity..  The longest wait I endured was 18 months for an orthopedic surgeon and I felt utterly hopeless.

 

For chronic insomnia, I have been taking Zopiclone for 12 years, about once a week, and have never had any rebound or other issues, no side effects, no additional problems whatsoever.  There have been periods of time I deliberately chose not to take it for a few weeks to test the waters.  Though it does not solve the problem, it has enabled me to sleep soundly as natural sleep is rare for me.  I do take Ativan the odd time as well, but limit it to once every two weeks, short term, and to combat jetlag.  Melatonin did absolutely nothing for me but it my work for you.  Some find success with 5HT-P.  I agree that medication is a last resort and my intent is not to encourage reliance on it but at the same time, sleep is absolutely crucial for proper functioning.  I have herniated discs and fibromyalgia and insomnia, of course, exacerbates it.  I take sleep when I can get it.

 

I really hope you find the help you need very, very soon. 

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