Endocort weaning :( stress... and I need a friend right now

[Camie]

I have been reducing the Endocort to one a day per MD then to zero (endocort started july 21) Never got to zero. Sigh.. D again.
I am not eating and exhausted. Washing my hair makes me tired. I have had to cancel two outings due to stomach issues

These past seven days.

Sept 29.............my dad passed away 11 years ago. It is a pause in time.
Oct 1 dental apt. I have severe dental phobia so I choose or need to have IV sedation. That day is a waste
Oct 2 my moms birthday. She passed away July 13.............first birthday without her.


My husband is out of town at least four days a week. He was out of town for all of the above. I still have two kids at home that need fed et al. I cook them dinner I just cant eat it.

I am emotionally exhausted from this week. I am just feeling physically exhausted.

I knew the stove was dirty..........I ran the burners and such thru the dish washer a couple times.........no energy to scrub.


So he comes in from out of town.............I had a nice dinner clean sheets.

And he once again make me feel inadequate and takes the stove pieces and starts scrubbing it..


There is no time to be sick
or sad

[Joefnh]

Hello Camie ...it can be tough to taper off of these meds and it does sound like you are still reacting quite a bit and may not be ready to fully taper off of them yet. How are you doing with the diet side of MC?

The stress of home chores and the such does add to the stress of any illness, I think that MC makes it worse in that it not only robs us of our health but also makes it hard to get the nutrients we need for energy as well...

It sounds like you are doing what you can right now and are providing for your family in the best way you can .... I just thought I would check in and send a virtual hug and best wishes.

[Lesley]

Camie,
If your hubby comes in and helps MORE POWER HIM! He's a keeper. You are NOT inadequate. You are sick!
Coming off steroids is horrible! I had weeks of pain and suffering. The fact that you are managing it all with 2 kids at home is remarkable. If you can't pat yourself on the back for it please take a virtual pat from me.

How are you doing with the diet?

[Camie]

Thanks for the hug. :) It helps!
I am hardly eating anything these days so I can't imagine what I am reacting too. I have been lactose free for years. I am trying to go gluten free........but I am barely eating anything.

I have been cooking bone broths.


Just bought a juicer yesterday. The parts scare me!


Called the GI doc


Back to 9mg of Endocort today

Thanks for responding

[Stanz]

Oh, Camie,

I've been right where you are right now and don't you spend a minute apologizing for needing a friend right now, we've been there, many of us and I don't have to imagine writing out what you did, I've written it and many of us here have.

I didn't go the drug route, so I don't understand weaning, but I do understand a lack of spousal support. I'm sure you will be welcomed and supported by lots of people here who have been where you are.

Sending you hugs, Camie, you will get through this.

Connie

[Camie]

Thanks Lesley,

I need to hear I am not lazy............I just hate the feeling of being inadequate these days.............OMG I worked carrying twins as a nurse working twelve hour shifts until it was deemed that working would harm the pregnacy. Thank you

[wonderwoman]

sending you hugs

you need them right now.

sorry you are having a bad day.

[DebE13]

Camie- my heart goes out to you. My weaning of prednisone was a nightmare that I never want to go through again. I believe I still have side effects from taking the drug that include wearing earplugs every night to be able to sleep (and it's still not a restful one). I'm tapering off entocort too and wonder if I'll ever be able to go off. I'd be satisfied, for a while at least, if I could do every other day. I'm trying immodium as a supplement but haven't noticed a change. I'll keep trying since I know there is no choice.

I am so sorry it's been such a rough week for you. I know how you feel about memories.....fall is my favorite time of year but for many reasons, that I won't detail, I have a kind of dread and sadness that goes along with the month of October. It's so hard to deal with emotional issues on top of family committments, day to day chores, and feeling sick all of the time. I smiled when you mentioned the stove. I am a bit overboard when it comes to cleanliness and everything being in its place and I too have simply come to be amazed at myself and how I've let things around the house slide. In reality, my house is fine but just not up to my standards, everyone is being taken care of and fed but I'm not enjoying it like I used to. It's hard to accept that things change and I keep trying to take it one day at time and remind myself that I AM STILL SICK even though I look fine. I hope someday I will be able to get back what I once had but realistically know that disease is forever so I work at lowering my standards of what's acceptable and try to be content with it. I've also actively decided to stop apologizing for everything. I'm sorry we can't eat out, I'm sorry I'm too tired to do this or that, I'm sorry I don't bake treats like I used to, I'm sorry for everything..... It's very hard on a marriage because I have changed tremedously and it's always scarey to wonder if my spouse will still be in love with "new" me that I don't even like quite often. I'm finding the more I accept what has happened, the easier it is for everyone else to be around me. The acceptance part is easier said than done but it's a constant struggle within myself that can be very destructive. When others can't visibly see sickness, it's often interpreted as being lazy, fowl tempered, etc.

I am trying my best to stick with a Paleo diet right now and has been difficult because it's been about two weeks and I haven't noticed any changes that compell me to stick with it. It's so hard when you can count on your fingers the foods that you eat each day. I would encourage you to do your best to eliminate all gluten in your diet. It's a lot to ask, especially when you feel so low right now, but it does get easier. I'm GF/DF/EF/SF and struggling with remaining legume & grain free and for me it will always be hard, but it has gotten easier.

Hang in there!! Make sure you set aside time for yourself. With work, family, household obligations it is hard but the best thing you can do for yourself right now is to allow, even if it's 15 minutes, some time everyday where you come first to do something that gives you a little peace of mind. I feel selfish sometimes doing that but it always raises my mood which in turn makes life for everyone in my household a little bit easier. Best wishes to you.

Deb

[MaggieRedwings]

Camie,

Do not feel inadequate as this disease can rob us of any energy we have and leave us like a wet dishrag. You are doing what you can do right now and it seems very adequate to me. If hubby wants to scrub let him and ignore any comments.

My prayers are with you to feel better.

Love, Maggie

[tlras]

Sending hugs and prayers. Going back to 9mg should make you feel better. You were smart to call the doctor especially since you have felt so weak.

I'm almost done with week 3 of my Pepto treatment and I'm already dreading the day I can no longer take it. But I'm hoping for the best. Just remember to stay off gluten 100%. Even when you start feeling better I would continue the bone broth....it's very healing I hear.

Hope you feel better soon.

Terri

[mickjcat]

Camie,

I am so sorry about your state of affairs.....we can all relate to zero energy etc. Hugs to you, it does get better.
On the juicing, if you can at all gather the energy, try to do some vegtable juicing, it really gave me the nourishment I was missing from my diet. I believe it helped me make a turn around in my health, I am off the Entocort now for 1 week and 5 days....it can be done. It just takes awhile for your colon to heal.
By the way, my troubles started April of this year, I was on Entocort for 2 months, most of it trying to taper off.
Good luck

[Leah]

Oh Camie, I'm so sorry this whole thing has been so difficult. Deb's post was wonderful and she said a lot of things that I was thinking. Having no energy is so hard. Stick with the broth. For me, the best things were broth, cooked carrots, and RICE. I know that some here are grain free, but since I couldn't have fruit or many veggies, I had to get some carbs in for energy. Our bodies run on glucose. If we don't feed it some carbs, it will make it by breaking down our own muscles. That process is very tough on the body.

I hope your higher dose of Entocort starts working quickly for you. The juicing of veggies could be very good for you also :)

Take Care,
Leah

[fatbuster205]

Take care honey - you are not well, it has been an emotional week and when you are vulnerable it is so easy to take things up wrong! Your hubby is helping - not criticising - and you have no need to feel inadequate!! Take care!
Anne

[wmonique2]

Hey Camie,


hang in there, I've been there just 2 weeks ago...it'll get better, that's what they all told me here and it did.

Try to not be so hard on yourself.

Sending you a virtual hug!

Courage,


Monique

[ant]

Dear Camie,

As everyone says, energy is taken by this disease, especially if you are flaring. Sometimes, it's even hard to get out of bed, let alone do chores and look after others.

Sending you a big

Best wished, Ant