Update on Me

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tex
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Post by tex »

Marliss wrote:So, Tex, are you a Facebook user?
No, I have too many bad habits already. :lol: I don't do any tweeting, either. :lol:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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hoosier1
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Post by hoosier1 »

Polly,

I am suffering with you right now!!! Stress is such a huge factor in this problem. Of that I have no doubt. I am so so so sorry about your pet. That emotional stress is overwhelming. My wife and I are dealing with an elderly sick dog right now. And with me being sick, my wife is having trouble keeping it together. And I can't say I blame her. Her husband and her dog are both under the weather, chronically.

To be frank, I become even more discouraged when I see a pro like you relapse. You appear to be the rock of Gibraltar with respect to this nasty disease. So when you relapse (no to put any pressure on you), I lose a little faith in my own ability to recover and sustain that recovery. I'm not going to jump on the wheat-eating band wagon or anything, but it does give me pause.

But I LOVE your idea about disconnecting from the media. I am going to do that. It used to be, until I read your post, that the background noise in our house (or my hotel) has always been CNN or the like on low volume on the TV.

We had some former group discussions about the pursuit of a stress-free life, or what I call, the pursuit for simplicity. It seems that lately, no matter how hard I try to simplify my life, life throws me three curve balls that only make it more complex. And for me anymore, complexity = stress = I don't feel good.

I have a cool story to tell all of you. It may not seem like a lot to most, but I know this group will appreciate it. Yesterday, I was in the office after 4 days on the road. I was hoping to cut out by noon but my office manager had scheduled a meeting with a copier salesman later that day (she was doing her job) and I had several conference calls. So the day was starting to look long to me. Then my boss came into the office (I was thinking he was going to take the day off). He sat down across the table during my conference call, listened, and when it was over, says "what do you have going on for the rest of the day?" My first thought was, oh shi*, there goes my half day off to rest. But when I realized that this is my boss's way of hanging out with me, we left together to do some guy stuff. And I really had a great time hanging with him and not thinking about work. It's more like a father and son outing, which I really miss, because I lost my father when I was 32. God I miss my dad right now.

This is his way of de-stressing me and in his way, looking out for me. He really is a sainted man. And if I ever told him that, he would chuckle because he is not a huge fan of religion, etc. The bottom line is that he made my day. He knew I was stressed about my dog going through surgery. He knew I was tired from my trip. So he took the opportunity to get me out of the office. Like the old commercial, "Calgon, take me away."

I continue to be touched by the way he looks out for me. And he may not even realize that he is doing this. It is a tough job, and he knows it, having done it for 15 years. So he relates to me 100%. And he also has GI issues so he is more appreciative of what I may be going through.

I just thought that was an inspirational story, Polly. Like you say, enjoy family and those around you. Sometimes, I need a 2x4 upside the head to remember that.

Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
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hoosier1
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Post by hoosier1 »

I just don't get the "tweeting" thing. To me (no offense to anyone who has this) it is live sticking a bluetooth device in my ear. It's just one more thing I have to maintain, do, worry about, charge, respond to, etc.
"It's not what I believe. It's what I can prove." - A Few Good Men
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JoAnn
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Post by JoAnn »

Polly, it's good to hear you are doing well and finding time to disengage from the crazy world. I limit my viewing of the news and turn it off when I feel myself being pulled into the hopelessness of it all. It seems like each of our lives have enough trials, drama, and struggles for us to handle that we don't need to be looking for more or have it thrust upon us through the media. I believe in being informed and involved, but with definite boundaries. I feel more relaxed just reading about your new direction and am working on mine. JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
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Joefnh
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Post by Joefnh »

Hi Rich, it's great your boss has been so understanding. There are not many bosses who are that understanding. I am just coming to realize what a good situation that I have right now. I have the flexibility to work from home and have an overall very flexible schedule and environment. Your boss really does sound like he is trying to make sure your OK.

The take way message I have gotten from Polly's postings is that first there is hope and remission can and does occur, and second this is a long term if not lifelong condition that demands respect, but can be managed. I think learning to accept this and learn about and take charge of our own health is the key to managing this. Stress really is the great health multiplier.

I'm sorry to here that Will (is it?) is having issues, that's hard to take as our pets really do become part of the family. Your wife really must be a trooper. If I remember right she had her fill of health issues and now the tables are turned. I can imagine that for both of you that this can be a stressful time. These health issues really do take their toll emotionally.

I was reading in your other posts about your traveling experiences and carrying the foods with you. Have you bee able to source some foods at local stores when you travel? I will be starting up some fairly regular travel to the DC and Maryland area this December. I am hoping to research the area ahead of time and program into my Garmin some local stores and restaurants.

From your other post you made notes about loosing weight. Since all of this started last April, I have now lost 40 pounds. Mind you I certainly could have stood the first 20 but the weight loss for me has not stopped yet, I keep having to re-purchase my clothes. I am now tapering off of the Entocort as I am now taking Imuran for long term non-steroidal treatment. I am wondering is it the MC or the Entocort that is mostly responsible for the weight loss.

Thanks for your post Rich, it was great to hear from you. Do your travels ever get you into the Northeast?

--Joe
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hoosier1
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Post by hoosier1 »

Hey Joe,

Yes, i get to the NE quite a bit actually. It seems more in the winter than any other time (just to jam me up in weather). Will look you up if I am in your neighborhood.

Regarding finding places to shop for food, I have only done that twice. I simply went to the local supermarket and shopped the perimeter, getting staples I knew would be safe. But I have found that cooking is simply not convenient for my schedule.

So... I have found two restaurants, actually 3, that seem to be pretty consistent in their application of a real gluten free menu. They are Outback, Olive Garden, and BoneFish. Outback continues to be my first choice. Olive Garden and a mixed chicken grill (like shishkabob w/o all the spices). It is really quite good and very filling. I have not explored restaurants for lunch options per se, but have followed Tex's advice in finding local establishments that can cook me breakfast for lunch, or a hamburger and potato without the bun and butter. This is doable. I wish you luck.

Today, I am so fatigued that I am having trouble standing. I just got back from Lowes and had to leave the store because I felt so tired. I have no clue what is going on. Feels like someone unplugged my battery. I went from 3 to 2 Entocorts on Nov 2, but I find it hard to believe that could be the cause.

So do you think I should go back to 3 Entocorts a day for a bit longer? I am contemplating seeing an oncologist to look at my blood more closely.

Look forward to your response.

Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
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Joefnh
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Post by Joefnh »

Rich, I have tried to taper now 3 times the first after 3 months, the second after 5 months of use (per doctors orders) and now the final as I am now on Imuran. For me each time I experiences the worsening D and the fatigue. This time around the D is being kept in check by the Imuran, but the fatigue is noticed after each dosage reduction.

Yesterday like you I had to come home early while out at Home Depot as I was as weak and just couldn't take driving or walking around anymore. I am currently in my first week of only taking 1 Entocort a day.

I am going to PM you my work contact info, if you are ever in the Boston or southern NH area, give me a call.

--Joe
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Post by Robbie »

Polly, I gave up the news a long time ago - too stressful!

Tex, you're right - that voting thing on facebook was so "in your face" that I felt like quitting facebook. I only use it to keep up with my family (I have 7 "friends", all relatives). It's great for what I use it for, for now. It is, IMHO, filling up with junk that is wrecking it for me, though.

Rich, what a blessing you have in your boss! Great story!

What is is with those stores? I cannot stand up in Home Depot! I was better on my last trip there a couple of weeks ago, but last summer I had to leave the store. I was not doing well at Walmart either, but Home Depot was worse. This might sound silly, but is it the bare floors? Or maybe chemicals? Strange!
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hoosier1
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Post by hoosier1 »

Robbie,

Maybe the home improvement stores are injecting wheat into the HVAC systems :) ?

Funny coincidence.

Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
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