Me, whining about relapse...

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TramaDoll
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 8/21/2009 5:59 AM (GMT -6)   
shakehead   shakehead shakehead
I haven't visited here in some time due to my crazy schedule. Life is hectic right now. Hectic usually equals stress. Yeah, y'all know what this all adds up to. After years virtually symptom free or at least with very tolerable symptoms, I'm officially out of remission. If you've read this far I feel obligated to offer you a heads up, frustrated whining incoming! Yep, gunna be a long read.
 
My family/friends are amazingly supportive and I love them for that. I am blessed to have them. Though it is a bitter sweet fact, I find comfort complaining to those that understand. I'm sorry that y'all understand, I really am. I can't complain to them, don't want em to worry. Don't wanna be treated like a sick young adult. My thoughts may become a jumbled mess of emotion, do forgive me.
 
I have quit my third job upon request from my doctor and family. They know that if I can get out of bed, I will go to work and bust my rump to do my best. Why the hell am I drawn to jobs that are physically straining?
-Dental radiology. Put me in to my first flare along with a year of physical therapy for my legs, knees, feet and back.
-Gymnastics instructor. Dunno how I ended up with pleurisy but I was told I couldn't lift more than 3lbs for quite some time. Half my students were 14 year old boys and girls bigger than me as I'm petite.
-Waitressing. 8 hours, no breaks. 'Nuff said.
 
I hate, hate, hate when my body tells me I can no longer do something I enjoy. I'm a quarter of a century and I can hardly keep up with my mother (whose health isn't all that great either, bless her).
 
Nausea, all day all night. I wish I'd just vomit and be done with the upset tummy.
 
My appetite is shot. I'm hungry all the time yet the thought/smell/sight of food turns my stomach. When I do eat, I'm in the bathroom immediately afterwords for hours. I have a stress ball on the counter nearest the toilet. Gah. I would rather have ten paper cuts, twenty splinters and stubbed toes than go through that multiple times a day, every day.
 
Fatigue. Oh gods, the fatigue! I've been hyper active since I was knee high, being tired is a killer for me. I'm *always* yawning. I've never been much of a napper, always been a night owl. I could rise early and stay up til sun rise with no problem, except when I'm not in remission.
 
My hands and feet have been going numb. Often while sleeping but also while awake. When I get the feeling back in them, it's painful. So painful. When the pain is tolerable enough for me to sleep, I'm woken by my numb/painful hands/feet. The night sweats are a bummer, too.
 
New symptom, hot off the presses! Just started today! The skin on my legs are horribly sensitive. If the material of my clothing rubs softly against my legs, it stings. Weird, eh? *shrugs* I don't get it either. Guess I'll be asking the doc about circulation problems next.
 
Virtigo. Combination of the eight hundred different meds I'm on. Maybe it's the Texas sun. (Texans understand that summer hasn't even started yet) Dunno the cause of it but holy crap is it ever disorienting. Lightheadedness, extreme dizzy spells that intensify the nausea. Fun stuff.
 
Migraines. Been a sufferer of chronic migraines since before the dx but crying from all the pain seems to make them more frequent.
 
Chest pains, difficulty breathing. Just introduced my anti social cats to the new dog. That in itself is a headache. Bone spurs. Arthritis.
 
I just wanna sleep and eat! I'm so hungry. :(
 
However, I'm not stuck in bed. I still have a smile on my face most of the time. I get to catch up on some books I've been meaning to read. And yes, though times are hard, a little time off work will be nice, as soon as I remind myself to enjoy the unwanted vacation!
 
Comics help. I can't resist a good laugh. Silly, clean humor tickles me and really helps my foul moods, even if it hurts to laugh sometimes. Yeah, getting the furry family members acclimated will be rough, but darn is it ever hilarious. (Until someone gets an eye scratched out, let's hope we all survive!) The friendly neighbor girl is my age and has similar health issues and a great attitude.
 
This bites and it bites hard. But life is good. The roads gettin bumpy once again but, I know what to expect and I knew the next flare would throw new symptoms at me. I'm prepared this time. And I have something I didn't have during the first flare.
 
Healingwell.com
 
Thanks for reading. Hope you all have a great day and for those that don't... *hug*
 
 
-Ruptured ovarian cyst           7/4/2003 hospitalized for 3 days
-ER Laparoscopy
Dx Endometriosis                   11/10/2003 hospitalized for 3 days
-Ulcerative Colitis Dx              10/2005
-Pleurisy Dx                          12/26/2007
-1st and only UC flare             Jan-Mar 2006
 
1.2gm Lialda 3 daily, 100mg Zoloft, 110mcg Fluticasone, Proventil, Vit. B12 complex, 400mcg Folic Acid, 400iu Vit. E, 1000mg Vit. C, 800iu Vit. A, 454gm Hydrocerin.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/21/2009 7:18 AM (GMT -6)   
Hey, anyone is allowed to whine over a flare. That's a certified "whine-able" event.

I know your positive attitude will see you through this one, though!
Judy
 Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001. Flared for 5 years, finally in remission with Remicade since March 2006. Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
Avascular necrosis in both shoulders is  my "forever" gift from steroids.
Chronic joint/connective tissue/muscle pain; TKR 05/09 
"My life is an ongoing medical adventure"
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 8/21/2009 1:17 PM (GMT -6)   
Hi....welcome to the forum!

You certainly have amazing coping skills and it's awesome you have a very supportive family and a great sense of humour. It's very helpful in coping with the extreme ups and downs of UC and other health complications/disorders/disease that sometimes comes with it.

Firstly, are you seeing a GI at this time? Please encourage him/her to prescribe you rectal meds...I would suggest the 5ASA retention enemas (what's available depends on where you live). They will help heal the rectal inflammation and in turn help some of the urgency.

The GI should also do a full panel blood testing on you (liver/pancreas/kidney enzymes, inflammatory and autoimmune markers..etc)....including thyroid, B12, Vitamin D.

You could see if you can be referred to see a Rheumatologist to possibly see if there are more things related related with the numbness in legs/hands or if it's more mechanical.

I don't know if the Advair can cause some of your symptoms....but it's possible that the headaches can be related as well as the vertigo.
Of course, both could be hormone related.

How much vitamin B12 complex are you taking?

Is the vertigo when your head is tilted a certain way or when you lay down compared to when you're sitting in one position?
An ENT might be in order. Many vertigo disorders are related to migranes....one in particular is MAV, which is Migrane associated vertigo. One does tend to get the vertigo instead of the migrane, but one can have both.
Another is BPPV (positional vertigo).

If this is a recent thing, it could be a viral infiltration or even sinus infection.

I hope you're able to bounce back (gently) from this recent flare.....and everything else.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/21/2009 8:52 PM (GMT -6)   
I wonder, What is causing you so much stomach distress? That's not UC. Is it just the stress? You have such a wide set of symptoms/ailments. I wish you could find out what's going on with you! This is out there, but have you been tested for Lymes disease?? I have a friend who had sorts of ailments, peculiar things like you mention, and was having serious health problems for 10 years before they figured out it was lymes disease.
49 year old female attorney, diagnosed UC/pancolitis 1985. 
Asacol maintenance for 20+ years; 
Prednisone & Rowasa for flares. 
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some. 
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 8/22/2009 8:04 PM (GMT -6)   
Do you ever get weird hearing (extra loud or soft.. or gone) when you get vertigo and/or migraines? I visited the fibro forum and saw a lot of them had Meniere's (sp?) disease. That causes vertigo, migraines I believe, and the ear thing. But the vertigo could be coming from the nausea, I get that sometimes. And stress could definitely bring on more frequent migraines. I think I was just pulling at straws. Hope you feel better!

Also you sound like me. If I can get up, I'll do what needs doing. I feel you!
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/22/2009 8:44 PM (GMT -6)   
Hugs!  The only thing I can say about reading your post is that I can relate and it somewhat makes me feel better knowing I am not alone but I wish neither of us had to have all these problems.  I am 69 but no doubt most of the symptoms are UC related.
I have positional vertigo (laying on my back), nausea mostly mornings, bad knees from arthritis, some of the numbness (could be neuropathy), fatique, and cramping.  I do not have migraines thank goodness. 
Just wishing you the best.  We both need to see our GI docs and get him/her working on getting us better soon!
ElaineNY
 
Senior - diagnosed with proctosigmoiditis - 6/2008   
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


TramaDoll
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 9/1/2009 1:10 PM (GMT -6)   
How much vitamin B12 complex are you taking?
 
Right now I'm taking a Super B-Complex, I guess I grabbed a different one without noticing! I take one a day.
 
 
Is the vertigo when your head is tilted a certain way or when you lay down compared to when you're sitting in one position?
 
Shortly after I wake up, the vertigo hits. It's barely there at first and within thirty minutes I'm forced to carry a bucket around with me. It doesn't get better if I sit or lie down. For the last month, it's there... always. I noticed last week that sometimes certain smells send it in to a tail spin. Makes grocery shopping a PITA.
 
Do you ever get weird hearing (extra loud or soft.. or gone) when you get vertigo and/or migraines? I visited the fibro forum and saw a lot of them had Meniere's (sp?) disease. That causes vertigo, migraines I believe, and the ear thing. But the vertigo could be coming from the nausea, I get that sometimes.
 
Yes but my hearing has been doing that for some time now. It never seemed to be symptom related. I never understood it and I kind of thought it happened to everyone? The nausea is definitely increased by the vertigo. I don't feel nausea until it hits (or if I eat something that doesn't agree with me of course).
 
Thank you all for your replies. I have a doctors appointment in an hour and it gives me much to discuss with my PCM! Sorry it's taken me so long to get back to your questions, it's been a rough month. Hopefully I'll get some answers today!!!!
-Ruptured ovarian cyst           7/4/2003 hospitalized for 3 days
-ER Laparoscopy
Dx Endometriosis                   11/10/2003 hospitalized for 3 days
-Ulcerative Colitis Dx              10/2005
-Pleurisy Dx                          12/26/2007
-1st and only UC flare             Jan-Mar 2006
 
1.2gm Lialda 3 daily, 100mg Zoloft, 110mcg Fluticasone, Proventil, Vit. B12 complex, 400mcg Folic Acid, 400iu Vit. E, 1000mg Vit. C, 800iu Vit. A, 454gm Hydrocerin.

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