is anyone else completely overloaded with appointments?

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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/23/2009 3:30 PM (GMT -7)   
I'm going through my diary for the next few weeks, and I barely have a single free day. Between gp and infusions and physio and psych and all the rest of them, I don't even have a day when I can rest or see a friend.

It's ridiculous. They're all important appointments and will probably be beneficial... but I also get sick very quickly if I have to go out every day and don't get a chance to rest.

It's like they're helping with one hand and harming with the other, if that makes sense. It's frustrating. I'd quite like to be able to have a life, instead of being a full-time patient.

*sigh*

Is anyone else in this situation?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 10/23/2009 4:04 PM (GMT -7)   
There was a good 3-4 month period when every day off I had from work was filled with a dr's appointment, which is 2 days a week. Ontop of that I was doing iron infusions 1 day a week that was 1-2 hours long...I did that before going to work for the day...and I was also on Remi so every 6 weeks I had to fit in that as well.  Ontop of that scattered throughout that 3-4 month period I was probably in the hospital for a total of 9 days..and the ER a good 5 times. =)  Are we having fun yet!?
Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings
Current Meds: Cimzia, Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: Sept 4, 2009 to Take Down Abdominal Fistula!!  (On hold until current flare is under control, boo!)
 

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/23/2009 4:07 PM (GMT -7)   
Yes, and it's amazing how it can affect EVERY aspect of our lives.


bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/23/2009 4:08 PM (GMT -7)   
I don't have a job. I'm well enough now that I'd like to be able try to do something a bit more "normal", like a small amount or volunteering or do an easy, short course, or try a very lightweight casual job... and I don't see how I could, with my schedule.

FRUSTRATING. And on top of that, they keep lecturing me on the importance of having a life. When??!!!
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 10/23/2009 4:24 PM (GMT -7)   
Mine aren't too bad, but every once in a while they sort of cluster...
I collect my appointment cards and convert them to a calendar at home,
and a calendar at work.Remission solves most of my problems...
Gastro x4 ,Dentist x 4,G.P.x4,Derm x 4,infusions x 6,tests and procedures x2.
Looks like I've got it easy...
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Terbinafine,
Remission since surgery
and 8-week Remicade.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/23/2009 4:41 PM (GMT -7)   
Hmmm. Here's the rest of my month:

Mon, dietitian; Tues, chronic illness liaison worker appointment; Wed, gp; Thurs, physio; Fri, get mtx injection.
Mon, gastro. Tues, physio. Wed, infusion. Thurs, physio. Fri, get mtx injection.

etc etc etc etc etc.

Argh.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/23/2009 4:50 PM (GMT -7)   
I got exhausted just looking at your schedule!
Just trying to get to these things is exhausting.
This is where the little nanna naps come in handy - honestly sometimes I think I could nap off on clothes line :0
Make sure you try to have a quick nap each day - it might help get you through to the next day.
Sheesh Ivy - this disease is such high maintenance!
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone
Bowel Resection Sept. 07


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/23/2009 4:58 PM (GMT -7)   
It wouldn't be so bad if one could go there promptly and get out promptly, but (as we all know) we often lose an extra hour or more just sitting in the waiting room.

On top of that, I have to get hair cuts, pay bills, fill prescriptions, buy groceries, cook and clean... and it's not as if I can do any of those speedily because I'm not driving because of my wretched hands.

OK, whinge over. I'm just over-tired and overwhelmed right now. I just worry because I know that feeling overtired and overwhelmed are warning signs that another massive fibro flare is looming.

Nanna naps, Jo?! I'm spending most of my time in bed, and only getting out when necessary!! LOL.

The extremely tired Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Flaminguts
Veteran Member


Date Joined Dec 2004
Total Posts : 962
   Posted 10/23/2009 10:33 PM (GMT -7)   
Yep... My doctor at the pain clinic decided that it might help for me to do acupuncture, the only thing the acupuncture is doing is puncturing a hole in my time and wallet. I know it might work for some folks- and my guy works really hard on me... but it just isn't working. Not a thing. Then I have an 8 week series of pain management classes, remicade, My GI, and Rhuematologist, work, cooking, doing all the crap that my wife wants me to do...

I am tired and fed up. I am turning 30 this year and I feel like I am 80. My life seems to be slipping away.
Diagnosed]Imuran, Remicade, Methadone, Phenergan, Lots of vitamins. If you want to know more about me go to my MySpace page </FONT>

<FONT color=green>"History does not long entrust the care of freedom to the weak or the timid"
</I>


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/23/2009 11:08 PM (GMT -7)   
Yep, another young patient here, too, Deckies, with no chance to have a life... *sigh*
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 10/24/2009 1:47 AM (GMT -7)   
Oh Ivy I feel your pain!! I started a new job just weeks before I had to have my first abscess surgery..... ended up in E.R, then back at work again, then 1st surgery (2 days off work) then that didn't work properly, so another 2 days off for a 2nd surgery, and that's not to mention the APPOINTMENTS!! Why is it that specialists are only EVER available to see you at, say 1:15? The middle of the day? So you have to trek there from work! I haven't had a holiday or chance to see my family since easter, and it's so depressing. All of my work leave is swallowed up with iron infusions, remi infusions, surgeons appointments, surgeries, gastro follow-ups, the list is literally endless! And trying to fit them in around a full-time job is near impossible! sigh.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/24/2009 2:19 AM (GMT -7)   
And really, they then have conferences and write white papers about the problem of reintegrating us back into society and getting us off the disability pension. I think they need to change their own practises first, as they are at least 50% of the problem.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 10/24/2009 7:06 AM (GMT -7)   
Whenever possible I have all my appointments at 8 am,and report 15 minutes early.
The Dr's offices feel guilty and let me in early...Plus no variables for the doctors...
Luckily most of my appointments are months away so I get the first appointment...
Preventive maintinance...
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Fluconazole(yummy).More over the counter vitamin-D
Remission since surgery and 8-week Remicade.A real freakin medicine cabinet...
.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 10/24/2009 7:34 AM (GMT -7)   
I also make it a point to try to get the first appointment of the day - or if I have some issues that are going to take some extra discussion time I try for the LAST appointment of the day.

I'm retired and no longer working which gives me an advantage over those of you who work outside the home.

What I've found helps me most when I have weeks like this is to call a friend and arrange to have brunch, lunch, a snack or dinner after, before or between appointments. Yep, some days I have two appointments. Socializing can help so much and I really look forward to these tete-a-tetes w/friends. Even a Nacho Supreme and Senior Pepsi ($1.79) at Taco Bell and some good gabbing helps - A LOT!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/24/2009 7:43 AM (GMT -7)   
I don't have appts like that except for every 3-4 months or so. I see the family doc every 6 mos, the GI every 3 mos, the ortho every 4 mos, and then on occasion some other doc. I do feel overloaded every 2 weeks or so because I usually have RX's to pick up, I get my nails done every 2 weeks (something pleasurable for me) and a pedicure every two weeks. And I work a fulltime job. So sometimes I do feel a little appt weary, but since I am feeling better and in remission its not as bad. Maybe once they get everything figured out things will improve. JMHO

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/24/2009 12:58 PM (GMT -7)   
I hope so. I really am becoming alarmed. I can feel a massive fibro flare coming on, and quickly... and it's all because I'm not getting enough rest.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/24/2009 2:29 PM (GMT -7)   
((((((((((((((((((((IVY))))))))))))))))))))))))) I do not know what to tell ya. But hugs!
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/24/2009 2:35 PM (GMT -7)   

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 10/24/2009 3:16 PM (GMT -7)   
Ivy, why don't you do your methorexate injections yourself? I do mine every Monday as well, but I do them myself.  That would give you a free day.
Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings
Current Meds: Cimzia, Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: Sept 4, 2009 to Take Down Abdominal Fistula!!  (On hold until current flare is under control, boo!)
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/24/2009 3:22 PM (GMT -7)   
For some reason they won't let me self-inject Methotrexate. Humira, yes, no problems, but Methotrexate, no.

I'm not sure why. I've even heard of Australians in other areas who are allowed to self-inject, but I'm not. Maybe it's something to do with local health regulations.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 10/24/2009 3:37 PM (GMT -7)   
Yikes,totally forgot about the trips to the pharmacy...
Trying to get grosses of all my med's,from my doctors.
Pleased with getting alot of my med's through the mail.
It's bad,very bad, when they don't ask your name at the
pharmacy:(
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Fluconazole(yummy).More over the counter vitamin-D
Remission since surgery and 8-week Remicade.A real freakin medicine cabinet...
.

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