Sunday, January 31, 2010

Tummy Trouble

Yesterday, Jason managed to sit up for a short while. The night before, he'd managed to sleep in the bed. Since his surgery, he's been somewhere inbetween. Kinda reclined, stacked with pillows so he's neither sat up or lay down.

When we got home from the hospital on Wednesday, the bed was impossible. In order for the surgeon to get to the bowels, the tummy muscles have to be sliced through. I have to say, the surgeon did a remarkable job. He used laparoscopic surgery, with hand assist. That's where they use little robot thingies through small incisions, and then make a larger incision just big enough for the hand to remove what needs to be taken out. The tiny incisions are negligible really, and the larger one is about three inches vertically under the belly button, sealed with eight shiny silver staples. It is incredibly neat and tidy beyond belief. But it hurts when it scrunches up to sit forward, and hurts again when it is stretched to lean back.

It's funny how our comprehension of things is simple when dealing what we can see. When Jason sits up, I can see the skin around his wound wrinkling, and scrunching together... it must hurt. When he lays down, I can see the stretch of everything as it lengthens to accommodate the body's full recline. Again, ouch! But behind the scenes, something else is going on that I can't see. In order to sit up, or lay back the tummy muscles have to be employed... and Jason's tummy muscles have been sliced. It's gonna be a good few months before he'll be back to normal. Strange. He's had bowel surgery, and his bowels are working fine now. No pain with that. Who'd have thought.

Crohn's disease is like that. It's an inflammatory bowel disease. It's classed along with IBS, ulcerative colitis, and other "tummy" troubles. It's often mistaken for IBS, because of what you can see... heartburn, tummy pain, diarrhea. But it's what you can't see that diagnoses it as Crohn's. And by the time you get to know what's really happening behind the scenes... it's too late.

Many with Crohn's relate it to food. They find that certain foods put them in a flare. Many others relate it to stress. They find that when they're stressed, they end up in a flare. A flare is the term used for an episode of typical Crohn's symptoms. Extreme tummy pain, incredible cramps, bleeding, vomiting, weight loss, high temperature... and the need to take a sleeping bag into the bathroom, because the diarrhea you experience has you in there all day long. Or night. And that's just what you can see. What you can't see is what's really going on behind the scenes.

Crohn's isn't just any ordinary inflammatory bowel disease. (If there is an ordinary one, that is. ) It's one of those weird auto-immune things. What's really happening is that the body recognizes food as an invader, and goes into attack mode. It also recognizes bacteria as an invader, and launches an assault. All this causes white blood cells to accumulate in the lining of the intestines, producing chronic inflammation, which leads to ulcerations and bowel injury. Unlike other ulcerative bowel conditions, the Crohn's ulcers don't just form on the top layer of the intestinal lining... all layers are often involved, and treatment is difficult to say the least. Sometimes, the ulcers are so invasive that they tunnel their way through to other parts of the body. These tunnels are called "fistulas", and are a non-too-pretty complication of the condition.

There is no cure for Crohn's. Basically the body's system doesn't work properly. It doesn't like food, and it doesn't like bacteria. Both are essential to the workings of the human body. As the disease progresses, the normal anti-inflammatory meds are no longer enough, and the GI guys have to break out the serious stuff... the steroids to attack the inflammation, and the immune suppressants to put the immune system to sleep. Meanwhile, the ulcers have scarred the bowels so badly, that various sections are rendered damaged beyond repair. These sections narrow under the inflammation, and the first that many Crohn's sufferer's know about their true condition is emergency surgery for a blockage.

Jason was fortunate to have his Crohn's diagnosed by a brilliant GI doctor right here in Springfield, MA. At the time, we had no idea just how on the ball this guy really is. Although Jason's probably had Crohn's since childhood, it was only diagnosed six years ago. He's spent most of his life in pain... eating like a sparrow, avoiding events where food was to be had. Avoiding traveling in anyone's car other than his own, because he can find the rest room when he needs it... not when the driver decides it's time to get off the highway. And sadly, ducking and diving the slings and arrows, cheap shots, and sarcasm from those ignorant of what was really going on behind the scenes of the life known as Jason.

It's funny how we have comprehension for what we can see. Jason's had bowel surgery, so there must be something wrong. For Jason though, he's had this something wrong for most of his life. And the symptoms were there for all to see. But now, he's had major surgery, and that can be comprehended. It lends validation to his condition. Now it's okay if he doesn't want to eat. Now, it's okay if he declines an invitation to an event. Now, it's understandable. He has Crohn's.

Hello? He's always had Crohn's.

Saturday, January 30, 2010

Cutting Through the Mee-Maw

It's three days since Jason was discharged from the hospital, and he's really doing well. Having endured pretty much a lifetime of living with Crohn's disease, this last flare-up which began in May 09, couldn't be brought under control, and he ended up where two thirds of Crohn's sufferers end up... with major surgery. Most folk with Crohn's keep it to themselves. And those with Crohn's who are out of the closet, don't really go into details. Consequently, it's one of those conditions that is greatly misunderstood, and largely ignored.

I remember being a child, standing by my grandmother's side on our walk to the market one Wednesday morning. We'd bumped into a friend of hers in the street, another old lady, and the two women were gabbing. (These are English slang terms... "bumped into" meaning we met someone along the way, and "gabbing" means non stop talking, usually about other people.) During the course of the conversation a neighbour was mentioned. She'd been in the hospital, and had an operation. My ears pricked up, and I stopped looking around aimlessly and came over all attentive. And then the weirdest thing happened. The other lady, while freely jawing about the situation suddenly tailed off mid sentence and her mouth moved but no sound came out. We call this mee-mawing back home. Where you mouth the words, but your voice is AWOL. Course, this always happened with the old folk when kids were around. And it always happened just as conversation was getting interesting. They'd been talking about the neighbour being in hopsital and having an operation. It'd be six months before she'd be back to normal. Poor woman. Well, you know what's wrong with her, don't you. She's had a... and the mee-mawing began, accompanied with the most curious distortions of the face, forehead, and eyebrows.

It's really weird how an absence of information always causes the mind to go into overdrive. Being human, we tend to try to fill in the missing pieces. In the main, for most of us, this strange pastime of ours is usually without malice. But the missing pieces we fill in are invariably inaccurate. My young innocent mind boggled as to what could possibly be wrong with the neighbour, and why it was such a secret. Not for any kind of nosiness though. But more out of a fear of one day going into hospital and having them do something to me that meant I'd be ill for at least six months. It would be many years later as a young adult woman, that I'd discover this type of mee-mawing among gabbing women, was usually where a hysterectomy was involved.

It's strange, but once armed with all the information (and of course, being old enough to comprehend what such an operation means to a woman), I was then able to actually feel the correct kind of sympathy with an understanding. I daresay, back in the day, hysterectomies were so frequent among older women, because of the quietness that surrounded them. I do believe that as the ways of the 1940's gave way to the fifties and on through the 1960's to the seventies... we began to understand more as medicine advanced, and became more open to discussions about women's health. Today, breast cancer is screened for, as is ovarian cancer and many other "women's" stuff. Through a willingness to be open, understanding came forth. And through this we have been able to leave the stigma of certain conditions behind and advance.

Jason has had a bowel resection. He's barely 35 years of age. This type of surgery abounds with myths and misinformation. It's a classic for mee-mawing. Mee-mawing, though very well intentioned at times, feeds into the imagination and perpetuates ignorance. With his permission, I am trying to blow the lid off a condition whose sufferers feel like lepers, and consequently live a life without understanding, and a life that often appears to those around as being anti social at times. They often withdraw from full social interaction, because well... you just don't go round telling folk that your insides are shot-at and you need your own personal rest-room. (Shot-at is another good old English slang term, meaning "in a hopelessly bad condition".)

He's doing very well considering that surgery was only a week ago. They removed around ten inches from the terminal ileum, which is the end of the small bowel. It's a common site for Crohn's, and it's usually the last resort when all other medication has failed to arrest the flare-up. They rejoined the section without incident, and although it's gonna be many months before he can bend properly, or lift anything significant, he will heal well. Just to diffuse one mee-mawing myth, if I may... he hasn't been given a bag. Yes, he's had a bowel resection, and though it might be hurting like all hell right now for him, his bits and pieces still work fine. It would appear that bowel surgery is no longer in the dark ages. There are magnificent surgeons out there, who are bringing Crohn's into the 21st century.

Friday, January 29, 2010

We Are The Champions

Sometimes, whether to be open or not is a close call. I don't mean "open" as in "for business". But as in how much to say. What to tell folk. How far to go with details.

Almost 20 years ago, the death of Freddie Mercury rocked the world. Twenty years before that, I was there for Queen's rise to fame. It wasn't my kind of music... I've never been into rock. But this group's rise was meteoric. Down the years, we've had our share of pop icons over in England... the Beatles, Bay City Rollers, Rick Astley... to name but a few. I think everyone will agree that both sides of the Atlantic, Freddie Mercury was an icon. His death on November 24th, 1991 was a shock. But what I found most shocking of all at the time, was discovering what he'd died of. He'd died of complications arising from AIDS... and he'd kept it to himself.

AIDS was a modern day leprosy. You'd catch it if you so much as looked at someone who had it. You had to be careful who you were standing next to on a bus. And whatever you did, you mustn't touch them, or you were on a death sentence. Don't go near those kind. They were dirty. That's how you caught AIDS... by being dirty. Ignorance has this way of breeding fear.

From 1988, the rumours surrounding Freddie Mercury's health were rife. He denied that he was ill in any way. He was just exhausted from performance. His fans were many. Like... too many to count. And with so many people hanging on to your every move, your every word, your every breath, you're in a position to make a difference in the world.

Fans listen to their icons. That's why product placement is so sought after. Put a glass of Pepsi in a pop idol's hands and watch the money roll in. Let a soap opera beauty be seen with a jar of face cream, and you're ready for Wall Street big time. Sit by the bed of an AIDS patient, hold his hand... and you've blown the whole lid off the myth of a terrible ignorant scourge.

Freddie Mercury's death angered me. He had been in a position to do so much for so many. He was no real Royalty with a capital "R". But he was royalty within his own industry, and he had one almighty following. He was in a position to be the rock world's Princess Diana. He could have raised so much awareness while he was living. He could have sent the AIDS coffers all Wall Street.

I've never forgotten how I felt back then about Freddie Mercury's passing. I was so angry. Without awareness, myths perpetuate. Ignorance abounds. And many people suffer unnecessarily. I'm older now, and maybe a little wiser and more understanding. Maybe Freddie Mercury felt dirty. Maybe he didn't want the press eviscerating him. Maybe he just plain felt that it was nobody's business but his own. It was his illness afterall, and for whatever reason, good or bad, he chose to keep it to himself and not share.

My husband has just had some serious surgery. He's suffered since childhood... keeping it to himself because... well, you just don't want to tell people that kind of thing. Oh, how typically nineteenth-century-England that is. Keep everyone in the dark, and let the ignorance breed. My husband has Crohn's Disease. And before you say, "Oh, yes... I've heard of that", let me tell you... you've maybe heard the term. You've probably heard nothing about the condition, and the feeling of leprosy it forces you to live with.

I can't be a Freddie Mercury. I have to be a Princess Diana. I don't have the rock star fan base that could help to make any real difference. But I can certainly do my little bit to bring this God-awful condition out into the open, and maybe bring about a different understanding the next time a guest at your dinner table leaves a full meal uneaten. Or constantly refuses your repeated invites to lunch, weddings, or funerals.

Thursday, January 28, 2010

Manor Health Update

Thank you to everybody who has commented and written to me with their positive thoughts and prayers.

Just a quickie update. The surgery went very well and Jason is finally out of the hospital as of yesterday. He is still recovering and having trouble doing lots of different simple things that we all generally take for granted, like sitting down and getting up. He asked me today "if this is what being pregnant is like". Yeah. Sort of. But that lasts for nine months.

Thanks again to everybody. I will update again soon. I just wanted to let everyone know that all is well.

Wednesday, January 20, 2010

On the Back Burner

My little Manor Hall has been online for five years. In all that time I've only ever had to close the web site once. That was when our shopping cart crashed and the whole site had to be rebuilt from scratch.

Tonight, for the second time in five years, I've had to close the web site. Techy husband guy is having major surgery on Friday. I depend on him an awful lot. He handles most of customer service, he does the invoices, the worksheets, the labels and just about anything and everything that requires the computer. It's just not practical to keep the web site open for orders while he's out of action.

Besides all that, I don't think I could keep my head straight after being back and forth to the hospital, knowing that there are orders waiting for me that may need urgent attention. I hope everyone will understand.

Meanwhile, the buy me button on all the product pages has been disabled. Hopefully, his recovery period will go well and the web site will be ready for taking orders again in mid-February. I'm looking at perhaps Monday the 15th. I will be updating the blog regularly as time permits. Thank you.

Monday, January 18, 2010

A Soap By Any Other Name...

I love making the Honey Rose soap. The scent of this really lifts the days in my workshop as it sits curing on the shelves.

It's a warm smell, with the sweet of honey carrying the gentle rose. It's not a bouquet though, It's more special than that. A bit like the difference between being given one single stem, and a whole bunch.

Yes... that's what it is. It's single rose of love to your face. Now, who wouldn't want to recieve that!

Friday, January 15, 2010

A Little Help For Haiti

Although it's been all over our televisions, the catastrophic effects from this week's earthquake in Haiti are absolutely incomprehensible. Among all the awful devastation, access to basic needs like shelter, food, water and soap (yes, soap!) is severely limited. Soap helps inhibit the spread of disease and infection, and since I have lots and lots of soap here at the Manor, I am going to do my tiny part to help the people of Haiti through a wonderful program called Clean the World.

Clean the World Foundation, Inc. was founded in February 2009 by two individuals, Shawn Seipler and Paul Till, as a Florida not-for-profit corporation. Through the collection, recycling and distribution of soap and shampoo products discarded by hotels every day, Clean the World is dedicated to preventing millions of deaths caused by acute respiratory infection and diarrheal disease.

This afternoon, I've gone through the workshop and gathered as much soap as I can, to send off to the wonderful people at Clean the World. All of the Mischief Makers are gone from the web site, and soap stocks have been raided as much as I dare. I also have many soap ends which will also go, as all of it will be melted down in giant vats before being made into individual bars at the Clean the World headquarters and sent off to Haiti. I'll work to replenish as much as I can this next ten days.

There are of course other ways to donate, including through Unicef, Doctors Without Borders, the Red Cross, The Salvation Army, You can also donate to Clean the World, who accept monetary donations as well as soap. If we all do a little bit, a lot can be achieved!

Image reprinted from the NJ Star Ledger.

Thursday, January 14, 2010

Newsletter Sale

It's newsletter weekend and there's a big sale going on at the Manor. 20% off your order, all weekend long. Just enter the coupon code SAVEME20 at checkout to receive 20% off your order. (Note: Coupon does not apply to already discounted items, including Mischief Makers and Monthly Specials.)

Now is the ideal time to try our new Moisturizing Body Lotion and Foaming Bath and Body Wash. Or maybe one of our new Nourishing Face Creme or Aroma Roll-Ons. With a 20% discount, you can't go wrong.

And to help your shopping dollar go further during the month of January, all orders will receive $6.00 shipping. Any weight, to anywhere nationally by Priority Mail. No coupon needed, our cart will apply the $6.00 shipping for you.

Ends Monday the 18th at midnight. What a way to start the new year!

January Freebie

Every month I get to enjoy giving away a free bar of soap with every order. Never a mystery and always full size, the order box freebie for the month of January is a bar of Honey Me Smooth. Check out the freebie page to see what else can be free inside your order box this month.