Suzy & Spice

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Archive for the ‘Crohn’s disease’ Category

Fighting Crohn’s disease

Posted by Suzy Taylor Oakley on February 20, 2010

Anyone who has read this blog in the past couple of years knows that Crohn’s disease has been a major part of my 12-year marriage to Bruce (he was diagnosed in December 1998, just before our first anniversary). (Click “Crohn’s disease” in the category cloud at left to read some of the archived posts.)

Bruce has had three flare-ups in the past 11 years, the most recent of which started three years ago and lingers still.

Crohn’s has taken Bruce’s job, a lot of our money and a good deal of our energy (I never thought I would be this tired at 47!).

With a disease like Crohn’s, you feel helpless much of the time. Its cause is a mystery, its cure nonexistent. Today.

Tomorrow, we will find a cure.

Today, we are working toward that cure, not as scientists but as advocates – for education, awareness and research.

Because, in some things, we are not helpless. We have choices. We can decide.

I have decided to fight.

I don’t make New Year’s resolutions, but I made myself a goal for 2010. This year, I’ve committed to helping bring to Arkansas a chapter of the Crohn’s & Colitis Foundation of America.

The nearest CCFA chapters are in Dallas, Tulsa, St. Louis, Nashville and New Orleans. A little too far to drive, if you ask me.

CCFA is dedicated to finding a cure for Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), and “to improve the quality of life of children and adults affected by these diseases.” Read more about CCFA’s mission here.

It is one thing when your 39-year-old husband is diagnosed with such a devastating disease. It is another when your cousin’s 10-year-old son is given the same diagnosis.

Ten percent of the more than 1 million Crohn’s sufferers in the United States are children, including my young cousin, Spencer. He was diagnosed last summer. He’s 11 now, and his little brain has had a lot to absorb in the past several months.

Spencer has probably done more research on Crohn’s than many adults have. He’s super-smart and ultra-aware. He knows stuff that an 11-year-old boy shouldn’t have to know about himself and his body. Not yet.

But maybe Spencer will be the guy to find the cure someday.

Meanwhile, he’s part of the movement to bring a CCFA chapter to Arkansas.

On Saturday, May 15, at 5 p.m., we will walk for Crohn’s and colitis. Read more here about the Little Rock Take Steps Walk. It will be a casual stroll (less than a mile) in a family-friendly, festival-type atmosphere.

To join Team Taylor Trotters (Taylor is the maiden name of Spencer’s mom, her sister and me) or to donate, click here. Our team goal is $5,000. Every donation of $5, $10 or more will help us reach our goal.

To all of my cousins, aunts, uncles, nieces, sibling, future sibling-in-law and friends around Arkansas: April or I will be contacting you to walk with us, but feel free to post a comment below (or click the above link and join) if you’re ready to get on board now! (And if you are a designer, we need help with a T-shirt design. We’ll have Team Taylor T-shirts, but we haven’t gotten that far yet. We’ve been busy working on tomorrow’s Walk kickoff party in Little Rock.)

2010 is the year that Arkansas will establish its very own chapter of CCFA. Be a part of it!

Today.

Posted in Crohn's disease, family, health, volunteering | 7 Comments »

Take steps to stamp out Crohn’s disease

Posted by Suzy Taylor Oakley on December 27, 2009

On May 15, 2010, I will walk in the Take Steps for Crohn’s & Colitis Walk. Take Steps is the Crohn’s & Colitis Foundation of America’s evening walk and celebration and the nation’s largest event dedicated to finding cures for digestive diseases. It is a 2- to 3-mile stroll to raise money for research, bringing us closer to a future free from Crohn’s disease and ulcerative colitis. More than 1.4 million U.S. adults and children are affected by these digestive diseases.

Your donation will help support local patient programs and important research projects. Because my husband, Bruce, has suffered from Crohn’s disease since 1998 and my cousin’s young son was diagnosed several months ago, this cause is very important to me, and I appreciate your help as we fight for a cure.

If you would like to do more than donate money, considering joining me at the event. There will be food, music and children’s activities. The more money we raise, the closer we will be to making life more manageable for patients who live with these diseases every day.

Please join me May 15 at Riverfront Park in North Little Rock or click here to donate to my efforts to support CCFA in finding a cure.

To read about some of Bruce’s struggle with Crohn’s disease, visit some of my previous posts: November 2007 and December 2007.

Thanks for your prayers and support.

Suzy

Posted in Crohn's disease, family, health, medical | Leave a Comment »

Remembering before they’re gone

Posted by Suzy Taylor Oakley on November 1, 2009

My dad was already 10 years gone from us by the time I started writing a blog two years ago. So everything I’ve written about him has been tinged with the golden glow of memory. Most of what I’ve written about Dad has been about what a wonderful man he was – with a note or two along the way about the not-so-desirable traits I inherited from him (we won’t get into that in this post). Even though he wasn’t a saint, from my daughterly perspective he hung the moon.

But his death is not the only one to have touched me deeply in the intervening months.

Three days ago I attended the funeral of the second of my mom’s brothers to die this year – my Uncle Charles.

Uncle Bill died in March in Yuma, Ariz., where he had lived for more than four decades, including much of my childhood. I never even started writing about him because I just didn’t know how I could say what was in my heart. I didn’t think I could do our relationship justice – Uncle Bill was very special to me.

Because I didn’t get to see Uncle Bill the last time I had an opportunity (something I will always regret), I made sure I saw Uncle Charles two weeks ago, when it was apparent the end was near.

I was expecting him to be so medicated on painkillers that he wouldn’t recognize me, but when I got to his bedside and Mom said, “Suzy’s here,” he smiled. Didn’t open his eyes – just smiled. I stood there a few minutes and just stroked his shoulder. Then later, when Mom and I stood to leave, I took his hand and he squeezed mine.

Such a little thing, but so profound when you know it’s probably the last time you’ll see someone you love so much.

Uncle Charles died Monday, Oct. 26, in Batesville, Ark.

He, too, was a special uncle to me. One of the two pastors who preached his funeral on Thursday talked about what a sweet spirit he had, the other about his being a good friend and wise counselor. Okay, yes, those things were true. But what overpowers my memory about Charles Taylor was that he was mischievous. His antics – like licking his finger and swiping it across your eyeglasses, or pulling your hair ribbon that your mom had tied just-so – were what we talked about after the funeral, my aunts and cousins and I.

He was a mischief-maker and all-around fun-loving guy. But the truest thing that was said about him on Thursday was that he loved his family. No doubt about that. He doted on his wife and daughters and grandchildren.

But what I thought about as we were pulling out of the church parking lot on the way to bury my Uncle Charles was not about the dead, but about the living.

About how much I love my brother.

About how I don’t need to wait until someone’s gone to express my feelings.

I’m not sure whether JT noticed that I hugged him a little longer than usual the last time I saw him – the weekend I said my unspoken goodbye to Uncle Charles in the hospital.

Maybe Bruce’s illness has hit me harder the past couple of years than I have spoken about. (Bruce might disagree that I have left anything unsaid.) We have decided to move to Batesville to be closer to Mom, JT and his girls, not to mention the aunts, uncles, cousins and church family I left behind 23 years ago in search of adventure.

That was half my life ago (I will turn 47 this month). And half a life is enough time to start appreciating the good fortune I had to grow up in a small town (two small towns, actually), where the people at the bank not only know you by name, but they’ve known you since before you knew you wanted to leave them for “bigger and better things.”

The good fortune to grow up with parents who stayed married to each other to the end, with a brother who – even amid sibling conflict of sometimes-epic proportions – still managed to love his little sister in ways that surprised her.

My brother and I are polar opposites. He makes friends easily and I have to know you awhile before I trust you. He goes on gut reaction, while I psychoanalyze everything before making a single move. He can’t sit still for more than five minutes, and I’d spend an entire day reading a good book if I had the time. Et cetera.

Despite our different approaches to life, our basic moral values are the same. After all – despite opinions and theories to the contrary – we came from the same womb.

We were raised by the same two parents, who taught us both to love God, country, apple pie and baseball. (Although the subject of baseball, in itself, casts suspicion on that conclusion – he’s a darn Yankees fan!) [Note: Since reading this post, JT has made it clear that, while he does enjoy a good Yankees slugfest, his veins bleed Cardinal red.]

My bubby is a real guy. He hunts, watches sports ad nauseam, plans Friday-night card games with his friends, mans the grill when we get together for barbecues. And, even though he has two daughters, he doesn’t quite get all that “girlie stuff.”

That’s all okay – in fact it’s the way it’s supposed to be – even though he is not exactly like me. (Would our mother be able to handle it if he were?!)

Like Uncle Charles, and Uncle Bill, and Dad, my brother JT loves his family. Even though the ways he demonstrates it may be subtle at times, it’s an undeniable fact. (He has a big heart, but he’s more likely to express his feelings in deeds than words.)

He calls my mother, his next-door neighbor (actually, their back yards adjoin), every day. When he’s on the night shift, he calls her from work before her bedtime. When he needs to know (or tell) something, he calls her. He is protective of her, as he should be. He buys her groceries for her, mows her lawn, drives her to work when the streets are icy. I’m grateful, because I’m too far away to be of much help with those everyday, practical things.

JT and Mom are so much alike, just as Dad and I were alike. They “get” each other in ways I’ll never understand. I’m glad. I’m glad to know she has him to take care of her in ways big and small.

And when Bruce and I move to Batesville (Lord willing), my brother will take care of us. And we’ll take care of him.

Isn’t that the way it should be?

Posted in baseball, Crohn's disease, family, inspiration | Leave a Comment »

Random thoughts 09/12/09

Posted by Suzy Taylor Oakley on September 12, 2009

I got e-mail from my cousin Teri tonight, and she mentioned that she still checks my blog for news occasionally. I’m surprised anyone still checks, because I haven’t been posting much lately, mainly because I don’t have a lot of time to devote to one particular subject.

I’ve had a lot of ideas but none that could be summed up briefly in a post that wouldn’t put you to sleep. So tonight I’m just going to share snippets of what’s been going on in and around me lately:

  • My good friend Lynn’s husband, Doug, died this week. He was only 41 and left behind a wonderful wife and two kids, Doug and Jake. They’re still in shock; pray for them. (Lynn’s mom died last year, so this must be doubly devastating for her.) Lynn and Doug would have celebrated 19 years of marriage next month. Bruce and I had only just met Doug six months ago, when Jacob was in the state spelling bee (he took 7th place). Bruce had met Lynn only once – at Dad’s funeral in 1997. But when we got together for lunch after the spelling bee, we all hit it off, especially Bruce and the kids. The boys are very smart, and it was obvious their dad was very proud of them.
  • Two couples from my church family lost sons this week. One died in a car wreck, and I’m not sure about the other, as that family had begun attending Fellowship in Little Rock and I had lost track of them. Losing a child comes with its own special kind of pain – pain that I can’t even imagine. Pray for the Holaways and the Carltons. Another friend from church lost a sister. Pray for the Palmers.
  • My high school typing teacher, Mrs. Seibert, died this morning. She was a unique character and well loved by her students. If you were on her good side on a particular day, you were a “dumplin’,” but if you messed up you were a “donkey.” No matter which name she called you, you knew it was a term of endearment. I can still hear the way she said it, in that throaty voice with a Southern twang. Click here to read a tale one former BHS student told about Mrs. Seibert last year. (You’ll have to scroll down a bit to find his March 12, 2008, post.)
  • We had to pony up $2,100 on car repairs this week, and the guy who fixed it recommended another repair that will cost at least a few hundred more. ARRGH! On the bright side, this was the first major repair we’ve had to have done on this car, which is eight years old (we’ve owned it for three). And a repair bill sure beats monthly car payments.
  • I haven’t posted about this because life was too hectic at the time, but I started working on a second degree this summer. My hope is to get a bachelor’s degree, or at least an associate’s, in business (so I can find a job in Batesville and we can be near my mom, brother and lots of other family). I took Accounting I at the local community college, and I enrolled in Accounting II but had to withdraw the first week of classes because …
  • In early August I started experiencing some heart problems related to my October 2008 diagnosis of mitral valve prolapse. They strapped a bunch of electrodes on me for 24 hours of EKG monitoring, but that didn’t tell them enough, so now I have a monitor that I keep with me for 30 days and record any “event” that I deem significant. Fortunately (or unfortunately, if you consider that they charged me more than $900 for it the minute it was in my possession), I stopped having the major pounding episodes within 24 hours of getting the 30-day monitor. I still have a couple of weeks to go, but the worries have stopped. All my “episodes” the past two weeks have been mild – no worse than the usual ones I’ve been having for a long time. I think most of the recent symptoms were stress related, partly because …
  • Bruce has been fighting a urinary tract infection and prostatitis for the past couple of months. We spent a few hours in the ER on July 3 (because it was a Friday before a holiday weekend and all his doctors’ offices were closed) after his temperature hit 103. He’s been taking antibiotics and another new drug (new to us) ever since. He’s been having to give blood and urine samples every couple of weeks.
  • One of Bruce’s maintenance meds, Cimzia, may soon become a thing of the past for us. We had been getting it at no charge because after he lost his job our income plummeted and we were considered a charity case. Now that he has started drawing Social Security, the drug company may drop us from the program. But even though our income has gone up a bit, we won’t be able to afford the once-a-month injections, which cost $1,800 (yes, $1,800 for one shot in the stomach once a month!).

I guess that’s enough depressing news. What’s something cheerful I can tell you? Um …

  • I’ve been baking again. That makes me happy! 🙂 (I have to tell you, I feel a little guilty about the happy thoughts, in light of all the sad news around me this week.)
  • Bruce’s birthday is Tuesday (9/15). He’ll be 50! Mom, J.T. and I pitched in and got him a 12-string guitar. He’d been wanting one for a long time, and we gave it to him early. He’s been so happy playing that thing; he has played it just about every day since he got it. And I found the perfect T-shirt to go with it. It has a little stick man playing the guitar and smiling hugely, and it says “Life is good.” The shirt came in just one color: green, which is Bruce’s fave. And the skinny little stick man looks just like him!
  • On the recommendation of my cousin Pam, I checked out a great book from the library: “Lasagna Gardening for Small Spaces.” It’s the sequel to “Lasagna Gardening: A New Layering System for Bountiful Gardens.” It has made me start thinking about growing plants (both flowers and vegetables) that I’ve never grown before. I went to the local garden center first thing this morning and just walked around and took notes, then I went to the library and checked out some gardening encyclopedias and I came home and started doing some Internet research. Oh, but before that I bought a couple of pretty pots and a couple of new mums. I bought a pretty little pot and a little bronze-colored mum for the kitchen, and it looks so sweet in there, because …
  • We got new kitchen counter tops this summer. Yes, after 10 years of looking at those 1972 green counter tops that we had been planning to replace ever since we bought the house, we finally had the money to do it, because …
  • We refinanced the mortgage and used a little bit of the equity to make a few home improvements. We not only replaced the counter tops, we bought paint. Bruce is painting the kitchen cabinets white (before-and-after photos to come, but not until it’s all finished and beautiful), and we painted the laundry room, because …
  • We got new linoleum downstairs in the laundry room, spare bathroom and hallway. Maybe I’ll post before-and-after pictures of the laundry room when I’m not so tired. It looks great down there, too. The old flooring was also from 1972 (gold and dirty). The laundry room was yellow, and now it’s blue (my favorite color) and white, and it looks so clean and bright. I replaced the really old curtains with a nice, crisp white pair. I love it!
  • Our women’s group at church is starting a new Beth Moore Bible study on Monday. I’m so excited, because it’s about my favorite book of the Bible: Esther. The last Beth Moore study I got to participate in was on Daniel, and it was awesome! I can’t wait to dive into “Esther: It’s Tough Being a Woman.”

And that is where I’m going to end this post – on a happy, positive note. Because, despite all the hard things that have happened this year, I know I can still put my trust in the One who said, “I will never leave you or forsake you” (Hebrews 13:5).

God is good.

Posted in baking, Crohn's disease, flowers, friends, God, health, home, medical, music, reading | Leave a Comment »

Same hospital, different patient

Posted by Suzy Taylor Oakley on October 7, 2008

After so many months visiting Bruce in the hospital and having to make trips back and forth, the shoe was on the other foot this week.

Monday morning I went to the ER after telling a co-worker, “I feel kinda funny.” After having a couple of weird little symptoms over the weekend (that I hadn’t told Bruce about) and the co-worker telling me I looked “really flushed,” I decided to get checked out.

After a few tests I was diagnosed with mitral valve prolapse with mitral valve regurgitation. They did some tests Monday and kept me overnight for observation, and today was the TEE (transesophogeal echocardiogram). That test was done after the cardiologist heard a heart murmur during the regular echocardiogram but decided to get a better view by making me swallow an ultrasound transducer. Let me tell you, that was not fun.

I didn’t tell the second doc (the one who explained the TEE yesterday and performed it today) until right before the procedure that I have a strong gag reflex (I can’t even clean wet hair out of the shower drain without gagging – it’s not pretty). He had mentioned that some people have trouble swallowing the transducer. You have to gargle this viscous numbing solution for a few minutes, then swallow the solution, and if that doesn’t quite do it, they spray more numbing stuff down your throat. After the third spray I threw up the viscous gel stuff (I’ll spare you the details – let’s just say there’s a reason they don’t let you eat for several hours before a procedure like that). The doc said he had had patients who had trouble with the stuff but the throwing up was a first for him.

So he had to put me under – or at least he tried, I was told later. (One thing I did forget to tell him is that not only did I inherit the gagging thing from my dad, I also inherited the need for stronger drugs than most people require – Dad once woke up on the operating table during back surgery.) They give you an amnesia-inducing sedative, so I don’t remember, but apparently I was alert throughout the rest of today’s procedure. Let me just say that I’m really glad I don’t remember, although my sore throat is a constant reminder albeit a really good excuse for frozen yogurt when we got home this afternoon.

The bottom line is that many people live with mitral valve prolapse with no problems. The TEE showed more damage to my valve than they were expecting, but after one doctor (the one who did the TEE) brought up the real possibility of surgery (the scary, crack-open-your-sternum kind of surgery), the original doc said he just wants to monitor it closely. I have another echocardiogram scheduled for December, then he’ll see me every six months. I intend to seek a third opinion, however, just to be sure.

One of the lessons here is that early detection is extremely important. I had ignored a couple of things going on with me over the weekend, but when I got to work Monday and had the strange lightheaded feeling, I decided not to ignore it any longer. Ironically, those symptoms don’t seem to be related to the heart valve problem. I don’t believe in coincidences, so the other symptoms, however minor, may have saved my life – maybe not this week but down the road. (The link I provided above says mitral valve prolapse isn’t dangerous, but I also have the “regurgitation” part, in which blood leaks back into the chamber and can cause other problems.)

Bruce was telling the doctors that with his Crohn’s disease we’ve learned a big lesson about ignoring symptoms. In 1998, he nearly died before I could get him to see a doctor. When I finally told him I was taking him to the hospital, they discovered the disease that has taken so much out of him these past 10 years, and especially the past 20 months.

But I told him it’s because I read too many magazine articles about people who ignore little things until it’s too late. Monday morning I just finally decided to stop ignoring the little signs, even though they turned out to be “merely” stress related. Bruce and I joked yesterday that my job, which has caused me an extreme amount of stress in the past 11 months, may have saved my life. Who knows? It may be true.

But as I often say, I think it was “my guardian angel working overtime.”

Thanks to all of you who have been praying for us.

Posted in Crohn's disease, family, God, health, medical, work | 4 Comments »

Doctor visit update

Posted by Suzy Taylor Oakley on September 9, 2008

Before we got to Bruce’s appointment Monday, the abscess burst on its own. The doc said that was a good thing — saved the surgeon having to go in and drain it (and us a lot of money — my thoughts, not the doc’s). Bruce can walk a little better now that the swelling has decreased, but he did have to take pain pills over the weekend, something he hasn’t done in several months. The doc told him to finish the antibiotic and call him in a week. He adjusted a couple of Bruce’s other meds (increased one dosage, decreased another).

Just as we were leaving for the appointment Monday afternoon, the home health people called. They were the ones who were supposed to administer the new medication that we’ve been waiting three weeks for the insurance to approve. Home health found out that the insurance has turned us down.

Not like we haven’t been down that road before, but it’s awfully wearing on both of us, not to mention our doctor, who has said he will fight with them if we want him to. We love him so much. Not once has he ever indicated that he isn’t willing to tackle all the mess of paperwork we throw at him. The closest he came was to scrunch his face and stick out his tongue when we told him that the insurance won’t approve the Cimzia.

We also love his nurse, Brandi, who has been ever patient with our questions, requests for paperwork, prescriptions, last-minute appointments …

We are blessed to have such good care with our doctor and his staff.

Posted in Crohn's disease, family, health, medical | 1 Comment »

If, ands and butts

Posted by Suzy Taylor Oakley on September 6, 2008

This weekend Bruce started experiencing worse symptoms in his rear — the same problem he had in December, when he passed out in the bathroom as the abscess burst. We had his doc paged at the Ole Miss game this afternoon, and he put Bruce on antibiotics until we can make an office visit Monday. If the antibiotics don’t work, he may have to have surgery again. Only time will tell.

The day Bruce was discharged from the hospital last month, the doc said he wanted to try a new drug. We are still waiting for insurance approval for the drug. Monday, it will be three weeks since it was prescribed.

Bureaucracy is a pain in the butt sometimes.

Posted in Crohn's disease, health, medical | Leave a Comment »

Living with Crohn’s disease

Posted by Suzy Taylor Oakley on August 28, 2008

Here is a tiny glimpse of what Bruce deals with when he is in a Crohn’s flare-up, which has been the case for the past 17 months. He was diagnosed nearly 10 years ago, and we learn something new every time he gets sick. Click the link above, and listen to the voices of those living with the disease. Perhaps their stories will give you a little bit more insight into Bruce’s situation.

And if you click to Bruce’s blog, please know that he’s really a nice guy; he’s just gotten a little angry lately as he’s been confined to the house, with only the dogs, the TV and the Internet to keep him company.

Posted in Crohn's disease, health, medical | Leave a Comment »

4:22 p.m.

Posted by Suzy Taylor Oakley on August 18, 2008

Bruce and I drove away from the back door of the hospital at 4:22 p.m. That’s 5 1/2 hours after the doc said he could go home.

It’s 6:30 p.m., and I have dropped off his prescriptions, filled the car with gas (can’t expect these lower prices to last forever!), gone back to the store and picked up his new meds and a few soft foods, and I’m back home ready to work for the rest of the evening. My two busiest days at work are Tuesday and Wednesday, so please pray for my strength and endurance. Now that Bruce is home, I have to actually go to the office the rest of the week. I’m sooooo tired.

Posted in Crohn's disease, family, health, medical | 3 Comments »

Aack!

Posted by Suzy Taylor Oakley on August 18, 2008

The doc was in at 10:45 this morning and said Bruce could go home. At 1:30 I said to Bruce, “Gee, it’s taking them forever. They haven’t even removed your port yet.” He reminded me that last time he didn’t go home until 7 p.m., but I reminded HIM that the doc didn’t give that order until 4 p.m.

At 3:30 today, I went and asked a nurse what is the average wait time for a discharge to be processed, and she said it depends on when the discharge nurse sees the order.

She checked on it and discovered that Bruce’s chart had been put back in the rack and no one had seen the discharge order!

Aackkkkk!

Tonight I will let you know what time we actually got to leave this place. (Too bad we can’t get them to deduct a few thousand off our bill because of this. Believe me, I’ve tried to get charges reduced because of hospital incompetence. It’s a losing battle.)

In the interest of fairness, I should say that overall we have been treated well here. We know these things happen, but we are so ready to get home. Our furbabies will be happy to see Bruce, and I will be glad to have him there with me tonight.

Posted in Crohn's disease, health, medical | Leave a Comment »