Snarky on Entocort

lorimoose · Post by **lorimoose** » Fri Oct 18, 2013 7:32 pm

Hi,

Did anyone here find they were "snarky" while taking entocort and for a while after weaning off? The thoughts going through my head....and sometimes right out of my mouth have been less that sweet!!

Just wondering...

Lori

DJ · Post by DJ » Fri Oct 18, 2013 8:21 pm

Hi Lori, I felt better going on Entocort, including reduction in body aches.
After spending 2 months on 9 mg and two months on 6 mg, I'm now on 3 mg Entocort. With each reduction I have had body pain, difficulty dragging myself out of bed, one migraine headache and increased gut symptoms, all of which seem to level off within 3 weeks.
I can't say that I feel snarky with changes in Entocort but having increased symptoms is unpleasant and a little stress provoking.
Just dealing with MC and learning how to eat again could make anyone a bit snarky.
I hope you feel better!

DebE13 · Post by **DebE13** » Sat Oct 19, 2013 4:58 pm

I had to look it up......

Definition of snarky (adj)
Bing Dictionary
snark·y [ snrkee ]
sarcastic: sarcastically critical or mocking and malicious

I always thought it was part of my OCD.

I've been thinking about that a lot lately.... How our medical conditions and/or medications may have an effect on our personality.

Gloria · Post by **Gloria** » Sat Oct 19, 2013 9:01 pm

I agree that my disposition is tied to the status of my MC much of the time. When things are normal, then I feel life is OK. When they're not going so well, I get discouraged and am probably not much fun to be around. I've written before that MC is a roller-coaster ride both physically and emotionally - at least for me.

I've never attributed my crankiness to Entocort, though. Like Deb, it's probably part of my need to control - and I can't control this fickle MC. I suspect that's the reason I've been dealing with it for so long. I need to learn that some things are beyond my control, try as I might.

Gloria

lorimoose · Post by **lorimoose** » Sun Oct 20, 2013 5:50 am

Good Morning,

Thanks for the responses. Knowledge is power, and the disease is frustrating, in that it is fickle. I truly am SO much better, but there is still a day or 2 a week that knock me down. It seems to be no rhyme or reason, and I hate the unpredictability. Still not a good excuse for my snarky attitude.

I find myself not accepting invitations, because I don't want to let people down (or myself). I hate that I can not be depended on. I have cancelled so many things at the last minute....but on the good days, I believe it will last....and one day I know it will!

No Snark today...will be my motto.

Warmly,
Lori

JFR · Post by **JFR** » Sun Oct 20, 2013 7:20 am

lorimoose wrote: I find myself not accepting invitations, because I don't want to let people down (or myself). I hate that I can not be depended on. I have cancelled so many things at the last minute....but on the good days, I believe it will last....and one day I know it will!

Lori

For me that's been one of the hardest aspects of all this, not being reliable, turning down invitations that I would otherwise accept, worrying about getting through upcoming events rather than being able to relax and enjoy them. I keep trying to work on acceptance of my own limitations along with not letting my anxiety keep me from too many things as well as not worrying about what others might think of my no shows. Luckily I live alone so usually the only one who is effected by my bad moods is my dog and he seems to love me anyway.

Jean

DJ · Post by DJ » Sun Oct 20, 2013 9:16 am

lorimoose wrote:
I find myself not accepting invitations, because I don't want to let people down (or myself). I hate that I can not be depended on. I have cancelled so many things at the last minute....but on the good days, I believe it will last....and one day I know it will!

Not accepting/extending invitations and, in my case, also not accepting help is leading me down the road to isolation and I'm a pack animal. In my case, stamina and working out the food situation are both a big challenge right now. I have not seen the relative and friends I spend most time with since The Great Flood of MC last March.
I have a life-long history of being the family clown. My son and his friends, my nieces, nephews and their friends, my grandchildren, great-nieces and nephews and family friends expect me to be laughing, playing, moving, and inviting them for fun-filled weekends at my house plus holding a full-time job. My goal right now is for them to understand that I still love them and that the family clown persona is completely unavailable. They are all out of town and some of them want to visit and help but that involves entertaining at least to the degree of pulling the house together and feeding them and it could involve overnight guests. Mustering that extra energy seems impossible and I completely avoid their visits. Some of my friends totally don't get it at all and they are offended. I am quietly offended by their misunderstanding, I must say. I miss all of them.

Fast forward.... My husband and I took a 4 1/2 hour round-trip drive to visit my 91 y/o mother yesterday. I had not seen her since The Great Flood of MC last last March. I brought food to make hamburgers and well-cooked carrots for lunch for the three of us and learned that my mother shut off the gas to her stove because she has her food brought in now. I found an electric frying pan that's about as old as I am and made the burgers and substituted potato chips for carrots. We took my mother for a ride to a few stores and decided to stop in on one of my sisters. I knew she would want to at least serve coffee so I found a store with coconut milk along the way (I don't like black coffee). The initial part of the visit was my sister reading labels, trying to find something to offer me.
Our time away from home was much longer than I expected and I had planned for only one meal. When we returned to my mother's house I had potato chips and grapes for dinner. My husband had nut bread and coffee

After dropping my mother off and having "dinner" we stopped in on my good friend, who is also my niece. Her 10 y/o petite daughter was awaiting our normal routine where she jumps up in my arms and I swing her around then hang her up-side-down and flip her to a standing position. I did it one time and then my husband took over as the playful person for our brief visit. Fortunately, there were no other kids in the house. After that brief visit, we drove home arriving at 11 pm. Today isn't bad because I'm home resting and driving/riding was not strenuous and our trip was low-energy.
I don't have the proper food situation under control and everything takes energy. If I work all week and try to make food for myself for an outing, that energy use.
I'm trying to conserve energy for a trip to VA to see my grandchildren. It is turning out that I will have a work-related, mandatory, "unplanned" visit to the NYC area M-F the week I leave for my long-weekend family visit. I will need to leave directly for VA after spending a week in a hotel, working long hours, and dealing with food availability. Getting ready for round two and finding energy for the kids will be a challenge. I fear that I will be exhausted and zoned out in VA. The alternative seems to be continued isolation.
If I were a dwarf, my name would be Sleepy

lorimoose · Post by **lorimoose** » Sun Oct 20, 2013 12:04 pm

So, within a 1/2 hour of writing my previous post at 7am, my stomach started gurgling, and it went downhill from there. I am co-chair of a social justice committee, that was meeting at 9:00am. I had to text my co-chairs from the bathroom, to let them know, that if I got there at all, I would be late. You all know the pain, so you understand that there is no way to be at a meeting, under the circumstances. When, I walked in late, I know they were happy to see me, but I also know that some of the members do not get it.....and it is hard to understand (especially without the gory details).

I try to think back to pre-MC, and what my reaction would have been- had it been someone else. I would like to think that I would not be resentful, having the extra work dumped on me.....because that is what I am doing to people I treasure and respect.

And this type of thinking makes me crabby (snarky and/or_itchy).

I wish we all lived near each other. We could be snarky together!! And if we didn't show at the last minute...we would be OK with that.

Thank you for letting me vent.

Warmly,
Lori

DJ · Post by DJ » Sun Oct 20, 2013 1:21 pm

Lori, If we all got together, there would be a long line for the bathroom and ALL of the people in line would be snarky

hahaha

carolm · Post by **carolm** » Mon Oct 21, 2013 8:45 pm

Hi Lori (and all). I think that is also the aspect of MC that I also struggled with the most-- not being dependable. I've missed weekends with good friends and reunions of college friends because of the weakness and fatigue. Many of my meetings at work are before school so 7:30ish and like you all said when it hits there's not much you can do. Even the Imodium won't work in time if I had motility issues that day. If it was a particularly rough day all I wanted to do was go home and lay down, so I had to pass on after work get togethers too.

But I am here to tell you this is no longer the case for me! I am back to scheduling meetings every morning, weekend trips and have another girls weekend coming up in a couple of weeks. It took every bit of two years, but somewhere in August something changed for the better. I assume I finished healing and am now in remission. In the 11 weeks of school I have not had even one day where I couldn't get to work or had to come home from work due to LC. The best part is that I am more focused on taking care of work and I rarely think of my LC. I schedule what needs to be scheduled. Later this week we have parent teacher conferences in the evening and even though it will be a 13 hour day, I'll be fine then and I'll be fine the next morning. I'm finally starting to trust that I will be okay now and in the future.

So keep battling-- you will get your MC arrested!

carol

Jeanemcl · Post by **Jeanemcl** » Tue Oct 22, 2013 12:45 am

Wow Carol....
THAT is really encouraging!! Good for you!!
Jean

DJ · Post by DJ » Tue Oct 22, 2013 4:48 am

Yes, hearing about success is important!

lorimoose · Post by **lorimoose** » Tue Oct 22, 2013 4:27 pm

Hi Carol,

Your note made my day! Thanks for the good news.

Lori