tag:blogger.com,1999:blog-52167085339940578012024-03-14T09:04:06.662-05:00In Sickness and in HealthMy journey as a wife and mother living with chronic illnessSuehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-5216708533994057801.post-33223786559938454072010-09-29T13:37:00.007-05:002010-09-29T14:04:43.629-05:00Laughter Can Be the Best MedicineSometimes I spend too much time worrying, crying, yelling, or sleeping to take time to laugh. Yet laughter can be the best medicine. Remember Robin Williams in the movie Patch Adams? It was about a real-life doctor who used humor to heal his patients. I think some doctors I've met along my journey could learn a thing or two from him. But that’s a topic for another time.<br /><br />Research studies have shown that laughter can have a positive effect on one’s health. In a nutshell, laughter increases the bodies “feel-good” hormones much like exercise, but much easier to do!<br /><br />Here’s a short list of what makes me laugh:<br /><br /> #1 The silly antics of my kids (some intentional, some not) Like when my son once wore two pairs of underwear to his grandma’s house for a sleepover, or when my daughter counted “one . . . two . . . ten” while playing hide and seek. Sometimes they make funny faces like all kids do, or they crack me up without even knowing what is so funny. When I hear them giggle, laugh, and sometimes even snort – it makes me feel happy, because they are happy.<br /><br />My kids bust out into laughter when a person loudly blows his nose in public. I'm not sure why, but this is really, really funny to them. My husband thinks this is hysterical as well. It must be because he is a little kid trapped in an adult body.<br /><br />#2 The goofiness of my husband (sometimes intentional, sometimes not) Like when he uses a poor British accent to imitate the voice of Charlie from the cartoon, “Charlie and Lola” or when he honks and waves at people that we pass by while traveling down a country road. Most people wave back, how funny is that?<br /><br />Often, my husband makes me laugh in a “shake your head” sort of way – as in <em>why </em>did you just do, say, or think <em>that</em>? Much to my dismay, he also has the annoying habit of laughing at inappropriate times like when we are having an argument or when he whispers something silly to me during church. Despite all that, he does make me laugh nonetheless, which is a “good thing” as Martha Stewart would say.<br /><br />All three of them can be quite the comedians - keeping me laughing even at times when I just don’t feel like it. Think about what makes you giggle, chuckle, smirk, or laugh so hard you just can’t stop. Maybe it’s a one-liner from your favorite TV sitcom or movie, or an inside joke shared with a friend. I recently re-connected with an old high school friend via Facebook. His goofy postings and emails always make my day a little bit brighter.<br /><br />So thank you hubby, kids, friends, and others who make me laugh and smile because . . .<br /><br /> “The most wasted of all days is one without laughter.” <em>e.e. cummings</em>.Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com1tag:blogger.com,1999:blog-5216708533994057801.post-58688225279810045532010-08-18T11:10:00.005-05:002010-08-18T11:44:08.440-05:00Doing the limbo!I met with the lung transplant doc for a four month follow up visit this week, and no big surprise - it's still too early for me to be considered a candidate. However, if and when, the time may come for me to even be listed, other complications related to scleroderma may hinder this possibility in the future.<br /><br />I have very mixed feelings about this. Yes, I am happy that I am considered "too healthy" right now, but it doesn't negate the fact that I have a chronic, potentially debilitating illness ticking away inside me. This makes me sad, frustrated, and angry all over again. A perpetual state of "wait and see." Limbo, if you will.<br /><br />When I first received a diagnosis more than six years ago, the doctors kept confirming I had scleroderma over and over again, but they didn't really offer a solid treatment plan except some medication for the various symptoms. And of course, the wait and see approach.<br /><br />In frustration, I finally asked one doc in a not-so-quiet voice (OK, I <em>was</em> yelling) "Yes, I know I have scleroderma, but what are you going to do about it?"<br /><br />Fast forward to the present, and I have these feelings all over again. Yes, I am stable, but I am by no means "cured." I have to take a ton of medications each day, use supplemental oxygen at night and with activity, visit at least one (or maybe more doctors) each month, go to pulmonary rehab twice per week, and worry that I won't be around to see my children grow up to be adults.<br /><br />I try to live one day at a time, but the time bomb tick, tick, ticks, away in the back of my mind. "When will my lungs finally give up, when will all the meds stop working, what new medical problem will be caused by this horrible disease?"<br /><br />It's really hard not to have these feelings. It's like when the limbo stick is very close to the ground, and you wonder if you can make it underneath.Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com2tag:blogger.com,1999:blog-5216708533994057801.post-78271142754857201382010-07-25T20:02:00.003-05:002010-07-25T20:47:03.927-05:00I think I had blogger's block, but I'm back with an updateHello<br /><br />It's been quite some time since I've written a new post. So here goes nothing.<br />The past four months have been quite busy around these parts. I have transitioned to a new team of doctors, except for a GI guy. Still need to set up that appointment. I had quite a few tests and doctors visits during this transition period, so I put that off for a bit.<br /><br />As a result of all that poking and prodding, we have learned that my pulmonary pressures have decreased, and that my condition is stable right now. So something is working - meds, exercise, oxygen use, attitude - doctors can't say for sure - probably a combo of everything.<br /><br />We've also learned that I'm "too healthy" to be considered for a lung transplant at this time, and that my acid reflux is not really as bad as it feels! I'm also a bit anemic so iron supplements have been added to my daily meds, and I have very little to no motility in my esophagus (cue the GI doc) so there are still some unresolved issues. But all and all I feel pretty good.<br /><br />On the home front, I have enjoyed summer break with the kids. They have kept me busy as their personal chauffeur driving them to their various activities like gymnastics, soccer camp, and swimming lessons. We've been sleeping late, eating ice cream, going to the library, etc., etc. - typical summer stuff. <br /><br />Ah, summer my favorite season! Love it!Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com1tag:blogger.com,1999:blog-5216708533994057801.post-8857381935599719142010-03-12T13:38:00.003-06:002010-03-12T13:49:30.588-06:00Contemplating FairnessThe concept of fairness has been very much on my mind this week.<br /><br />Really it’s been on my mind off and on since my diagnosis six years ago. Mostly, I have thought about fairness in terms of “why me?” Being chronically ill is so unfair to me, to my husband, to my children, and to my family and my friends, too.<br /><br />But the fact of the matter is many things in life are unfair. Bad things happen to good people. Unexplainable things happen to innocent children. People face adversity. People face day to day struggles.<br /><br />Last weekend, I got together for dinner with some friends from college. I gave them a brief update on my health. Sometimes I do not like to talk about it in much detail because I don’t want to be a downer. I’d much rather just eat, drink, talk, and laugh.<br /><br />After wrapping up an enjoyable evening with hugs and goodbyes, one friend quietly said to me, “It just doesn’t seem fair.” The comment actually took me by surprise a bit. “No, no it doesn’t,” I replied with just a hint of tears forming in my eyes.<br /><br />Although I sort of shrugged off her comment, it stuck with me all week long.<br /><br />And she is right. It doesn’t seem fair. But really, am I the only one in this group of friends being dealt an “unfair” card?<br /><br />Nope.<br /><br />Another friend with us that night shared her triumph of having just completed her last radiation treatment for one cancer cell found in her breast. Another, who will have her first baby at age 43, had just been diagnosed with gestational diabetes. She also has been ordered on bed rest for other complications related to her pregnancy. A third friend who could not be with us for dinner that night due to suffering a bout of pneumonia is in the midst of divorce proceedings.<br /><br />These bad things are happening to very good people. Is it fair? No. Can it be explained? Not by me.<br /><br />Ironically, fairness was the Character Counts topic at my kids’ school this week. To a kid, fairness seems so simple - Take turns. Share. Play by the rules. Listen to what others have to say. Treat people how you would like to be treated. Keep an open mind and be reasonable. Consider other people’s feelings. Fairness does not mean equal, but that each person gets what they need.<br /><br />Hmmm, sounds so easy. Not really. For me, perhaps one of the most difficult things about fairness is simply accepting the fact that life is <em>not</em> fair. It’s trying to move on from “why me?” to “why not me?”<br /><br />I’m not there yet.Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com2tag:blogger.com,1999:blog-5216708533994057801.post-88452639814343462392010-03-05T21:26:00.004-06:002010-03-05T21:53:18.501-06:00Breaking up is hard to doI am doing it.<br />I am seeking a second opinion.<br /><br />I am questioning the care and advice given to me by two of my many doctors.<br />I have seen these doctors for more than five years, so that's why it’s a bit hard.<br /><br />It’s like a break-up.<br /><br />My husband and I have been contemplating this change for some time now.<br />But what we needed was a little push. OK, a big push!<br /><br />In fact, what we really got was three pushes. And lots of little nudges, too.<br /><br />One push came from my local pulmonologist - let’s call him Dr. N. He joined my medical team last year. I like Dr. N and trust his opinion very much. He is honest and proactive. However, he is not an expert on scleroderma, and he doesn’t claim to be.<br /><br />So it’s almost like a third opinion because Dr. N said it was time for a second opinion.<br /><br />Why do we need so many opinions? Because it appears as though the pulmonary fibrosis in my lungs is a bit worse than last year. We were advised that I need to change to a stronger medication - one with potentially adverse effects, and maybe some unpleasant side effects as well. We were told there is no alternative.<br /><br />The second push stems from our frustration with my long term doctors’ “wait and see” approach. Let’s say they seem to be more reactive, than proactive. This approach may be OK when a health problem is not very serious, but doesn’t seem quite right when the condition is both serious <em>and</em> progressive.<br /><br />The third push came from my friend at Pulmonary Rehab. She has scleroderma, too. My friend recently changed to a different group of doctors, and has been urging me to do so for many months now. She even offered to drive me to appointments. She’s a great person.<br /><br />The little nudges came in various forms. Like when one doctor did not show up for a recent appointment without much of an explanation from him or his office staff. Or when it took more than a month for these doctors to review a recent CT scan, and compare it to last year’s scan instead of one from six years ago. This review came only after contact by me inquiring about the scan, and pointing out that it had not be compared to the most recent.<br /><br />Another nudge is what me and my husband call “the hurry up and wait” situation. We do our best to get to my appointment 15 minutes before it is scheduled (as they suggest on their confirmation voicemail) only to do so, then we wait, wait, and wait to see the doctor. Sometimes for over an hour!<br /><br />So it’s time to move on.<br /><br />We hope that this change will bring a fresh perspective on my care and treatment.<br /><br />We also hope that I will receive the very best care possible. Without the wait of course.<br /><br />But most of all, we hope that this change will bring us HOPE!Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com1tag:blogger.com,1999:blog-5216708533994057801.post-54342943618562662172010-02-26T16:33:00.022-06:002010-02-26T17:05:06.445-06:00Contest CrazyFor some reason, I have been entering contests lately.<br />Contests for cash. Contests for prizes. <div><div><br /><div>I even bought a Powerball ticket for my husband for Valentine’s Day.</div><div> </div><div> </div><div>He didn't win.</div><br /><div> </div><div>I am not sure why I’ve been so obsessed with contests in the past few months or so. Maybe it’s the hope or promise of something better coming our way.<br /></div><br /><div>Maybe it’s because most contests are just so darn easy to enter – just fill in some information <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5UxnGnC2dXKWpqAcB_heh5V93isAVF31dmEumFQE1FDixAl-O7_XStKKTL15_6sPM7A5kGeuF8-dEo_KmtJdUCCNfGvn6-XA8LF2wqde5Ec7JrRcWf8B6358mEcjkP8nYBMX2v_tqhe3N/s1600-h/onavy5.jpg"></a>and click. </div><div><br /> </div><div>Maybe it’s because we are on a very, very tight budget and a mound of money would come in quite handy around here. </div><div><br /> </div><div>I think winning it big would be terrific.<br />But even winning it small would make me smile. </div><div><br /> </div><div>My daughter would love, love, LOVE for me to win a trip to New York in a contest I recently entered. And I would love, love, LOVE if she won the Old Navy SuperModelquin contest.</div><div> </div><div><br />So please vote for her at <a href="http://bit.ly/aKeoQg">http://bit.ly/aKeoQg</a>. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgViIc_1WTwYVnQPcCahpa8QMIhyl8MED-6sFIMKS0TwowvirNpLCHBhHNmHc3IwuPtl-Nabo4WeY339IqQVirC-f-hRMHC-ELsmm9UlozgKrptsp0eYSFE_SKgQlxfKVOVFf3TckWjHdwm/s1600-h/onavy5.jpg"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 150px; FLOAT: right; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5442686692110122546" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgViIc_1WTwYVnQPcCahpa8QMIhyl8MED-6sFIMKS0TwowvirNpLCHBhHNmHc3IwuPtl-Nabo4WeY339IqQVirC-f-hRMHC-ELsmm9UlozgKrptsp0eYSFE_SKgQlxfKVOVFf3TckWjHdwm/s200/onavy5.jpg" /></a></div><div><br /> </div><div>Even though winning the SuperModelquin contest is a long shot, spending an hour or so at the Old Navy with my daughter (without her little brother) was a lot of fun.</div><div><br /> </div><div>Priceless. </div><div><br /> </div><div>(Except for the 50 bucks I spent on some spring clothes for her and her brother)</div><div> </div><br /><div>Vote now, vote often.<br /><br /><br /></div></div></div>Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-5216708533994057801.post-29539816238197357102010-02-17T08:57:00.003-06:002010-02-17T09:09:44.910-06:00And a rush came over the room . . .Go, go, go.<br /><br />It seems as a society we simply cannot slow down.<br /><br />Rush here, rush there.<br />Do this, do that.<br /><br />Frankly, I’m quite tired of all the rush.<br />Truthfully, I just can’t keep up.<br />I have to move at a much slower pace than the rest of this hurried world. Simply so I can do just one thing which is<br /><br />Breathe<br /><br />Rushing here, rushing there takes my breath away.<br />It makes me frustrated.<br />It makes me nervous.<br /><br />Take for instance a recent shopping trip to a well-known discount department store. Now I ordinarily do not spend too much time shopping at big stores or malls anymore because it usually is just too exhausting for me. But on Monday I had nearly two hours to kill while my daughter was at a birthday party nearby, and my son had some money burning a hole in his Thomas the Tank Engine wallet so off we went.<br /><br />Luckily, I walked about the store at my own almost turtle-like pace. Then, I rested while my son checked out all the toys.<br /><br />It is at the check-out where I felt that I just wasn’t cutting it in the sport of discount department store shopping - as in a “hurry up lady, you’re not moving fast enough for us” way.<br /><br />First, the not-so-friendly cashier seemed miffed that I wanted my son to pay for his items with cash, and then I would pay for mine with credit. I guess that would have slowed her down in the Olympic event known as discount department store cashier cross.<br /><br />Next, she waited impatiently as I tried to dig some change out of the child-sized Thomas wallet. This is not an easy feat for a person like me who sometimes has trouble using my fingers to do simple tasks like opening a jar, buttoning children’s clothing, or pulling apart tiny Lego pieces.<br /><br />Then, before I could even gather up my bags and put my credit card away, the cashier was moving on to the next customer who had not so graciously placed her eco-friendly shopping bags on top of my stuff. Not that I have anything against eco-friendly shopping bags. We use them from time to time as well. I just didn’t want those bags on top of my stuff, or in my space, urging me to hurry up and move on already.<br /><br />Now, like the not-so-friendly cashier, I was miffed. I even mumbled something to the cashier and the eco-friendly shopping bag lady as in, “Can you give me a minute to finish? I even accidentally knocked one of her bags off the counter when I gathered up my stuff. (I swear it was an accident) But both the cashier and pushy bag lady didn’t seem to care. They both just looked at me like I was crazy. As in a “hurry up lady, you’re not moving fast enough for us” way.<br /><br />I have seen that look before. It happened one time when a fast-paced couple nearly plowed me over while I was walking s l o w l y while wearing my portable oxygen on my way out of the hospital after pulmonary rehab. On that day, I did not mumble. I said loudly, “You don’t have to walk right on top of me!” I am in a hospital. I am wearing oxygen, for goodness sake. Slow down. I don’t even recall if they said they were sorry. They just went on their merry, hurried way.<br /><br />The frantic pace of the outside world is not only to blame for my dislike of all things fast. Many times, I feel rushed in my own home or with my own family. Hurry, get breakfast, lunch, or dinner on the table. Hurry, get the kids out the door or they will miss the bus. Hurry, sign this paper, make a phone call, fold the laundry, check this math paper. Hurry, get in the car so we won’t be late.<br /><br />Hurry, hurry, hurry.<br /><br />Sometimes my family needs a lesson in taking a less-than-lightening pace. I remind my kids that they need to slow down because mommy can’t move so fast. I remind my impatient husband that dinner won’t be for awhile yet as he paces about the kitchen. I remind my 70-year-old mother to stop walking so fast when we are together.<br /><br />Sometimes even me, myself, and I forget that we can’t keep up with this lickety-split world. I have to remind myself to slow down, to stop, to relax, and to take a deep breath. I have to give myself at least one hour to get ready in the morning, instead of just 45 minutes or less. I have to remind myself to do one or two things at a time, not three, four, or more. I have to rest if I need to rest.<br /><br />Rest, Rest, Rest.<br /><br />Slow down, slow down, slow down.<br /><br />Breathe<br /><br />Ahhhhhhh . . . that’s more like it.Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com1tag:blogger.com,1999:blog-5216708533994057801.post-47086116988730978352010-02-01T14:51:00.010-06:002010-02-02T10:43:27.177-06:00Just say (oh!) no to . . . ChocolateWell, I finally had my appointment with the ENT (ear, nose, throat doctor) last week who assured me after sticking a teeny tiny camera through my nose and down my throat that my vocal chords looked just fine, thank you. Of course, by the time of this visit my voice had returned to near normal.<br /><br />In his opinion, my sexy (hoarse) voice, might have been caused by a broken blood vessel due to coughing. Imagine that! I've been told that I will always have a cough due to the problems with my lungs. Sometimes I cough a lot, sometimes not so much. But I always have a cough.<br /><br />Oh, and the ENT said there is some evidence of acid in my throat, too. No surprise there as acid reflux is a complication of scleroderma, which is my case is pretty well-controlled by taking medications, avoiding certain foods, elevating my bed, etc., etc., etc.<br /><br />So thank goodness, no new meds, no further testing, no follow-up appointment. Just some tips on how to prevent acid reflux. Avoid coffee, tea, cola - basically anything with caffeine, don't drink red wine, and don't eat dairy products after dinner, blah blah blah.<br /><br />I am pretty good at avoiding foods or drinks that will trigger acid reflux, except for one of my favorites:<br /><br /><span style="color:#663300;">CHOCOLATE!</span><br /><br />Yes, the doc said to limit chocolate. I can do without coffee. I don't drink cola or red wine, and I hardly ever eat after dinner. But chocolate? I enjoy having a little bit of chocolate each day. Isn't it supposed to be good for you in some antioxidant sort of way? Doesn't everyone deserve a little bit of chocolate <em>every</em> now and again?<br /><br />I don't think I can easily give up chocolate. I can try, but I will have to be strong.<br /><br />I will try to remember this quote by author Judith Viorst:<br /><br /><span style="font-size:130%;color:#663300;">"Strength is the capacity to break a chocolate bar into four pieces with your bare hands --- and then eat just one of the four pieces."</span><br /><br />Viorst is best known to me as the author of the children's book, "Alexander and the Terrible, Horrible, No Good, Very Bad Day." It is precisely on that kind of day when I need a little bit of chocolate.<br /><br />Wouldn't you agree?<br /><br /><br /><br /> <br /><span style="font-size:130%;color:#663300;"></span><br /><span style="font-size:130%;color:#663300;"></span><br /><span style="font-size:130%;color:#663300;"></span><br /><span style="font-family:times new roman;color:#663300;"></span><br /><span style="color:#663300;"></span>Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-5216708533994057801.post-18347401444018397152010-01-29T15:23:00.017-06:002010-02-01T14:20:22.549-06:00Flashback FridayJust for fun, I thought I would post a photo of me and my babies from awhile back . . .<br /><br />2002 to be exact<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVfBh3cmMExwDDhVAKitxfcz9VKeoiqJWXIOaKZFgapcOdPixQGWxVlslJo-2t4muDfFtPCWiIhXNy6s683BTQHI5l7xUVAtTpRtHsHuawZsUsqxJUs4PuLVfCIt2fotZwZ4snW4XMSVWc/s1600-h/Sueplustwo1.jpg"><img style="WIDTH: 320px; HEIGHT: 292px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5433370941095723330" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVfBh3cmMExwDDhVAKitxfcz9VKeoiqJWXIOaKZFgapcOdPixQGWxVlslJo-2t4muDfFtPCWiIhXNy6s683BTQHI5l7xUVAtTpRtHsHuawZsUsqxJUs4PuLVfCIt2fotZwZ4snW4XMSVWc/s320/Sueplustwo1.jpg" /></a><br /><br />Some thoughts:<br /><br />Boy, I sure look tired! And I still am.<br /><div>WOW - Eight years have gone by really, really fast.</div><div>Little did I know at that time how soon our lives would change.</div><div>I miss those "baby" days.</div><div>I have the cutest kids in the whole wide world.</div><div>I cannot imagine my life without them.</div><div>I am blessed.</div><br /><div></div><br /><div></div><br /><div></div>Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-5216708533994057801.post-977700899984351662010-01-13T10:00:00.001-06:002010-01-13T10:01:31.886-06:00Breakfast for Dinner<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdzt9wBCFElj_kTB2wo9TTAhweWU7qK27D9-dsUyZWDd8d_jsnBCo-5pkOa71s5ulFi15inExU2eAKs7p8U-V4757tHCqbnqAB57N3fMvMFCcczF50ocYZd_EuZ5IngR5m_1GK7iTKOU4u/s1600-h/pancakes.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 200px; FLOAT: left; HEIGHT: 172px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5426250371842428210" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdzt9wBCFElj_kTB2wo9TTAhweWU7qK27D9-dsUyZWDd8d_jsnBCo-5pkOa71s5ulFi15inExU2eAKs7p8U-V4757tHCqbnqAB57N3fMvMFCcczF50ocYZd_EuZ5IngR5m_1GK7iTKOU4u/s200/pancakes.jpg" /></a>Stacks of pancakes with butter and syrup, cheesy scrambled eggs with bacon or sausage, French toast stuffed with cream cheese with fresh fruit on top. Our family loves having breakfast for dinner.<br /><br />We have pancakes for dinner so often that my mom often asks me, “Is it pancake Thursday this week?”<br /><br />But we didn't wait until Thursday this week. Instead, we had breakfast for dinner on Tuesday. I even fancied it up a bit by making three kinds of pancakes - plain, chocolate chip, and cranberry pecan. We also had bacon, and some fried eggs, too.<br /><br />Why do we love to eat breakfast for dinner so much? Because it’s easy. It’s a quick meal to make, most of the ingredients are on hand, and the kids gobble it up. My son’s record is thirteen pancakes in one sitting (and he’s just seven years old). Sometimes even my husband makes the pancakes, and he cleans up, too.<br /><br />When I am really tired and maybe not feeling that great, the kids will eat cereal for dinner. The hubby, too. Can you imagine? But it’s OK because the kids (and the hubby, too) wake up happy and healthy the next day.<br /><br />A year or so into my journey with chronic illness, I read a book called, “Cereal for Dinner – Strategies, Shortcuts, and Sanity for Mom’s Battling Illness” by Kristine Breese. The book is an excellent resource for ALL moms, not just moms like me. It discusses how to balance taking care of yourself while taking care of your family. It describes the author’s experience with sudden illness, and includes the stories of 18 other mothers who have faced sudden or chronic illness. The book encourages women to ask for help, to lower their standards if necessary, and to know that they can still be terrific mothers even though they cannot compete with the “Supermoms” of the neighborhood. It is a book I choose to look back at every now and again when I need some guidance along my way.<br /><br />But here’s another mealtime secret I would like to share. Sometimes when we are feeling especially lazy or just tired of cooking altogether, we will have ice cream for dinner. Yippee!!!<br /><br />Shhh – don’t tell grandma, or the gastroenterologist.Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com1tag:blogger.com,1999:blog-5216708533994057801.post-56873909112144745812010-01-07T12:10:00.002-06:002010-01-07T12:38:57.655-06:00Feeling blue on a white dayThere is no other way to say it.<br /><br />I am feeling sad today.<br /><br />I am sad because I just learned yesterday that the scarring on my lungs appears to be getting worse.<br /><br />I am sad that I just found this out after having some testing done at the beginning of December.<br /><br />I am sad that the doctors seem to be taking a nonchalant approach to this latest development.<br /><br />I am sad that there is a huge snowstorm in the Midwest, and that I had to cancel my appointment with the ear, nose, and throat doctor because of the weather.<br /><br />I am sad that I couldn't get another appointment with this doctor until the end of the month.<br /><br />I am sad that I still have a hoarse voice, and wondering if it will end up being something serious.<br /><br />I am sad because my 83-year old mother-in-law just left this morning with my sister-in-law for a four day trip to someplace warm and sunny.<br /><br />I am sad because a trip to someplace warm and sunny would be wonderful for me, but difficult for me to organize and manage.<br /><br />I am sad that even a trip to the grocery store, to church, or to the kids' activities is hard for me to manage because of this horrible disease (yes, I said horrible!) Especially in cold and snowy weather.<br /><br />I am sad that I most likely will not live to be 83, nor 73, nor 63, and maybe not even 53.<br /><br />I am sad that I am sad because everyone wants me to be positive.<br /><br />It's hard to be positive when I am feeling like this.<br /><br />So for today, I will simply be sad.Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com3tag:blogger.com,1999:blog-5216708533994057801.post-5275026126030255922009-12-30T15:24:00.024-06:002009-12-31T12:41:57.339-06:002009 - A Year in ReviewWith the hustle and bustle of Christmas over and a new year fast approaching, I have been taking some time to reflect on the events of the past year. It has been a year filled with ups and downs, good times and bad, and bittersweet memories. There has been sorrow, pain, and lots of tears. But there also has been joy.<br /><br />And laughter.<br /><br />And many, many small moments in our daily lives that kept me going, and reminded me that there is a higher power watching over us all.<br /><br />So without further adieu, here are some of the highs, the lows, and the in-betweens of 2009:<br /><br /><span style="color:#6600cc;">January:</span> After being very sick for many months prior to the new year, a right heart catherization revealed that I have pulmonary hypertension (high blood pressure in the lungs). It is secondary to the scleroderma, but is considered a serious complication of the disease. I started to use supplemental oxygen at night and upon exertion to help with breathing issues. This was a very difficult time for me, and for us all. I cried. I cried a lot. My daughter cried, too.<br /><br /><span style="color:#6600cc;">February:</span> Still quite ill and unable to tolerate cold weather, my sister came to town to help with the kids, make meals, and accompany me and my husband to doctors' visits. The kids celebrated Valentine's Day by exchanging cards with classmates. My son played floor hockey. My daughter took gymnastic classes. We tried to maintain "normal" around the house, despite everything that was not. My husband turned 44 years old. I got bi-focals. I added a new pulmonologist to my roster. He is close to home, compassionate, and takes a pro-active approach to my care.<br /><br /><span style="color:#6600cc;">March:</span> I finally leave the house for something other than doctors' appointments. My daughter and I saw a play and went out to dinner with friends. I watched the kids rollerskate at Family Skate night. I started a pulmonary rehabilitation program. Though difficult at first, it has proven to be a much needed and positive part of maintaining my health and well-being. My old college friends cheered me up with an evening of dinner, conversation, and laughter. They made the dinner including dessert, and brought it to me. They even gave us the leftovers! I shopped with my mom and sister for my daughter's First Communion dress.<br /><br /><span style="color:#6600cc;">April:</span> My baby boy turned seven! We celebrated with a soccer party for kids at the local YMCA, and a small family party at home. My husband and daughter attended the annual Daddy/Daughter dance at the local high school. It's a springtime ritual for them both. We celebrated Easter. We colored eggs, made a lamb cake, attended Mass, and ate a wonderful meal prepared by my oldest sister.<br /><br /><span style="color:#6600cc;">May:</span> My beautiful daughter made her First Holy Communion. We hosted a gathering at a local restaurant filled with good food, family, and friends. I attended the kids' art show and ice cream social at school. My husband took my son to his very first major sporting event - a Chicago Fire soccer game! My daughter broke her elbow jumping off the swing in the backyard. She chose a bright, neon-green cast. My son's spring soccer team ended the season undefeated!<br /><br /><span style="color:#6600cc;">June:</span> I "graduated" from pulmonary rehab. I felt so much better than I did at the start of 2009. I chose to stay in the rehab maintenance program for the long haul. We attended a breakfast at school for my daughter who earned a "Character Counts" award. On Father's Day, we saw the musical, "Mary Poppins" and stuffed ourselves with Pizzeria Uno pizza. I needed to use my supplemental oxygen as we walked around the city. But I did it!<br /><br /><span style="color:#6600cc;">July:</span> My hubby and I celebrated out 14th wedding anniversary. My parents celebrated their 48th! Like we do every year, we watched the community Fourth of July parade, had a small family BBQ, and "oohed and awed" at the fireworks later that night. My daughter decided she wanted to be a rock star, so she began guitar lessons. The kids took swim lessons, and did things kids do during summer vacation like catching lightening bugs, riding bikes, and fishing with their dad.<br /><br /><span style="color:#6600cc;">August:</span> We took a short family vacation to Michigan. I climbed down and up the dunes (using my supplemental oxygen.) The kids played in the sand and swam in the waves, so did their daddy. During all the fun, he lost his wedding ring in the lake or on the shore :( We played mini-golf and picked peaches. We ate ice cream. The kids played shuffleboard. It was a simple, no frills vacation. My son began the fall soccer season. My daughter made the Y gymnastics team.<br /><br /><span style="color:#6600cc;">September:</span> Another school year began. My daughter started third grade, followed by her little brother in second. I'm amazed at how fast they are growing up. I mourned the loss of my teaching career as the job would be too physically demanding for me now. I gave some of my teaching supplies and materials to a friend. I attended a Scleroderma Patient Education Day at Northwestern University with a friend from pulmonary rehab. It was informative, insightful, and helpful to meet with other people much like myself.<br /><br /><span style="color:#6600cc;">October:</span> Fall was officially in full swing with kids hard at work at school, and myself hard at work at pulmonary rehab. Our family had a great time at my annual college roommate get-together. Great friends, good food, and much-needed laughter. We visited a nearby pumpkin farm. We took a hayride, and the kids picked pumpkins that we later carved into jack o' lanterns. The kids trick or treated as a Rock Star and a British soccer player. They collected way too much candy!<br /><br /><span style="color:#6600cc;">November:</span> The rock star turned nine! My mom turned 70. We celebrated with a lovely family dinner at an Italian restaurant. We also hosted a tie dye party for the rock star and her friends. The girls cracked us up with crazy freeze dancing, silly faces, and an ill-attempt at pyramid building. We enjoyed a delicious turkey dinner with the trimmings at my sister's home complete with the kids' version of the First Thanksgiving starring various stuffed animals as the Pilgrims and the Native Americans. We had much to be thankful for this year like family, friends, God, and many, many prayers from both near and far.<br /><br /><span style="color:#6600cc;">December:</span> I celebrated my 43rd birthday. A laundry area remodeling project began, and was completed just in the nick of time before the holidays. The laundry area was moved from the basement of our two story home to the first floor in an effort to ease this chore for me and for the rest of the family, too. My daughter won five ribbons in her first gymnastics meet. Her faced beamed with happiness. I beamed with pride. We prepared for the birth of Jesus. We baked Christmas cookies with my sister, and she helped us decorate our tree and house for the holidays. The kids sang beautifully at the Christmas pageant and Mass on Christmas Eve after we spent a nice quiet lunch with my mother-in-law. Santa came. The kids received most everything they wanted. We enjoyed a delicious Christmas dinner with my parents and sisters. It snowed. The kids planned their fourth annual New Year's Eve party with their auntie.<br /><br />2009 has been a busy, challenging year for our family. But we have made it. I have made it!<br /><br />Here's to 2010. May it be filled with many more extraordinary (and ordinary) memories for all.<br /><br />Peace,<br /><br />SuzanneSuehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-5216708533994057801.post-58083735978094607592009-12-14T17:06:00.006-06:002009-12-16T18:58:52.812-06:00Losing my voice, adding a doctorAbout three weeks ago or so, I began to have a very hoarse voice.<br /><br />The nurse at the office of one of my doctors said it sounded sexy.<br /><br />I disagree.<br /><br />I sound like a frog with a very bad sore throat.<br /><br />It is starting to be annoying.<br /><br />When I speak to my husband, he replies "What?"<br /><br />When I talk to my mom. She asks, "Huh?"<br /><br />When I try to talk louder so the kids will hear me,<br /><br />they think I'm yelling at them.<br /><br />It's hard to help my son with his speech homework,<br /><br />test both kids on their spelling words or<br /><br />read them a bedtime story.<br /><br /><br />It is frustrating.<br /><br /><br />I would like to pull the covers over my head and not speak to anyone until January.<br /><br />That is when I have an appointment with an ear, nose, and throat doctor. I think he has a fancier title, but I'm not sure what it is.<br /><br />Another doctor joining my team - yippee I shout in a sarcastic voice.<br /><br />Here is the current roster:<br /><br />A rheumatologist, two (count 'em two) pulmonologists, and a gastroenterologist. I like to refer to them as the "ologists."<br /><br />Over the past six years, I also have seen several primary care doctors, three other rheumatologists, an infectious disease specialist, and a cardiologist.<br /><br />Why so many doctors? Because scleroderma is a complicated disease with complicated symptoms.<br /><br />The rheumy takes care of my overall health, checks on skin tightening, joint and/or muscle pain, monitors Raynaud's phenomenon - a condition in which fingers (and sometimes toes) turn purple, blue, or white with exposure to cold or stress, orders tests and blood work, and coordinates with other specialists.<br /><br />The pulmonologists (one local, one at a big city research hospital) treat and monitor lung complications. In my case, these include pulmonary fibrosis (scarring of the lungs), and pulmonary hypertension (high blood pressure in the lungs). These are the most serious complications of my disease. These complications will most likely shorten my life span.<br /><br />The gastroenterologist treats and monitors my acid reflux and slow moving stomach.<br /><br />Sometimes it's very hard to keep all these doctors on the same page. Other times, it's hard to determine which doctor to call when a new symptom pops up.<br /><br />Like my "sexy" new voice.<br /><br />Ribbit.Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-5216708533994057801.post-70033291937831955792009-12-08T10:37:00.013-06:002009-12-09T22:00:53.564-06:00My Love/Hate Relationship with SNOW!Much to my dismay, winter is off to a blustery start this week with the arrival of the flurry white stuff, cold temperatures, and a pair of shiny new snow boots for my daughter - just in the nick of time (whew!)<br /><br />I have never been much of a winter enthusiast despite living in the Midwest for all of my life. Sure I played in the snow as a little kid - making snow angels and forts, sledding with friends, or building snowmen with my sisters. But as soon as a little bit of snow or ice made its way into that tiny space on my wrist between my mitten and my coat, I was done for the day! Time for hot cocoa and cookies.<br /><br />So in honor of this first snowfall of the season, I will share with you what I love and hate about SNOW:<br /><span style="color:#ff0000;"></span><br /><span style="color:#ff0000;">Love:</span> How pretty the snow looks falling down, and how it blankets the bare tree branches and bushes.<br /><span style="color:#000000;">Hate:</span> How yucky the snow looks on the side of the road all gray, black and slushy after rush-hour traffic.<br /><br /><span style="color:#ff0000;">Love:</span> When my children shout with excitement "It's snowing, it's snowing!" Then, stuff themselves into snow pants, coats, boots, hats, and mittens to go outside to play for <em>hours.</em><br /><span style="color:#000000;">Hate:</span> Stuffing myself into layers of clothing, a coat, a hat, a scarf, and boots to drive in the ugly, gray slushy stuff just to run a short errand.<br /><span style="color:#ff0000;"></span><br /><span style="color:#ff0000;">Love:</span> The crunch crunch sound your boots make on the fresh fallen snow.<br /><span style="color:#000000;">Hate:</span> I don't get to hear that crunch crunch sound too much these days because my illness keeps inside during much of the winter.<br /><br /><span style="color:#ff0000;">Love:</span> When daddy takes the kids out sledding!<br /><span style="color:#000000;">Hate:</span> That I miss out on all the snow-frolicking fun because it's too cold and windy for me to breathe, I can't climb up a hill, and I wouldn't be able to move due to all the layers I would need to wear just to keep warm - kind of like Ralphie's brother in the movie The Christmas Story.<br /><br />But at least I can make cookies and hot cocoa for the kids when they come inside with their cheeks all rosy and bright.<br /><br /><span style="color:#ff0000;">Absolutely love: </span>This photo of my kids in the snow from a few years back . . .<br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpWAZ2vEF3uXwKmXd6GfKVGfsAyv4pjLWRAP4qI4c2EuXv6rKXoDc2U1bGg3AOX-IWO07emXvC1iUHl4NCHRn0GGOnB2AEgc8sBTkN6mObir8OHvlYNV7TGqLhVIrr2duMjtv2itzufv8v/s1600-h/snowblog.jpg"><img style="WIDTH: 159px; HEIGHT: 211px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5413088690141171890" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpWAZ2vEF3uXwKmXd6GfKVGfsAyv4pjLWRAP4qI4c2EuXv6rKXoDc2U1bGg3AOX-IWO07emXvC1iUHl4NCHRn0GGOnB2AEgc8sBTkN6mObir8OHvlYNV7TGqLhVIrr2duMjtv2itzufv8v/s200/snowblog.jpg" /></a> 2006<br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><span style="color:#ff0000;"></span><br /><br /><br /><br /><br /><br /><br /><span style="color:#ff0000;"></span>Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0tag:blogger.com,1999:blog-5216708533994057801.post-32957105361640929832009-12-03T00:00:00.002-06:002009-12-03T16:19:31.944-06:00Plan B (The Inaugural Post)<span style="font-family:lucida grande;"><span style="font-family:lucida grande;"></span></span><span style="color:#663366;">Today is my birthday.</span><br /><span style="color:#663366;"></span><br /><span style="color:#663366;">I am 43. </span><br /><br /><span style="color:#663366;">I am a wife, mother, daughter, sister, and friend. Once upon a time, I was a journalist, a teacher, a neat freak, a flag twirler, a laundry stain fighter, and a birthday party host extraordinaire - and oh, so many more different things.</span><br /><br /><span style="color:#663366;">That was until Plan B.<br /><br />Plan B? Plan B is a diagnosis of scleroderma, also known as systemic sclerosis. Scleroderma is a complicated autoimmune disease which affects the skin, but can damage the internal organs as well. About 75 percent of people living with scleroderma are women, many just like me. </span><br /><br /><span style="color:#663366;">I have been living with this illness for nearly six years. </span><span style="color:#663366;">Sometimes it makes me feel like I am 83.</span><br /><br /><span style="color:#663366;">Often times, it makes me long for my 20-something self. </span><span style="color:#663366;">Heck, even my 30-something self. </span><br /><br /><span style="color:#663366;">Does having a chronic illness limit my ability to do certain things? </span><br /><span style="color:#663366;"></span><br /><span style="color:#663366;">Yes.</span><br /><span style="color:#663366;"></span><br /><span style="color:#663366;">Has it changed my perspective on life?</span><br /><br /><span style="color:#663366;">Most definitely!</span><br /><br /><span style="color:#663366;">But I am still me, just a <em>different </em>version of me living day to day with a serious disease.<br /><br />This blog will be about my thoughts, feelings, and ramblings on and on about being this different and constantly evolving version of me. </span><br /><br /><span style="color:#663366;">It will be about my journey as a mom to two terrific kids, and a wife to a loving husband who has kept his marriage vows despite facing my serious illness.</span><br /><br /><span style="color:#663366;">On my life's journey, the hubby and the kids are along for the ride. Not by choice, but by chance.<br /><br />We welcome you to join us.</span><br /><br /><span style="color:#663366;">Suzanne<br /><br /><br /><br /><br /><br /><br /></span><span style="color:#663366;"></span><span style="color:#663366;"></span>Suehttp://www.blogger.com/profile/07652516877464261484noreply@blogger.com0