Friday, July 9, 2010

DO NOT Try This At Home Kids

Back in 2003, before I was pregnant with my son, I was feeling relief from my Gastro Esophageal Reflux Disease (GERD) - so, I stopped taking my meds for it. I was feeling better and I didn't need it anyway, right? I was also trying to get pregnant at the time and felt it was best to eliminate as many medications as I could. Not such a bad idea, but I did no research about the consequences of stopping a medication without consulting my doctor- but we’ll get back to that.

Once pregnant, I remained off of my anti-reflux meds. Maybe a good idea, but here's where my stupidity really shines. In my first trimester, I could not get enough jalapeno peppers. My cravings were strong. I used to listen to people talk about these cravings thinking they exaggerated, but after living it; these cravings are no joke. I was apprehensive at first to eat jalapenos, but then my cravings went from strong to insane. I started a little here and there. After experiencing no symptoms of GERD, madness set in and my re-found ability to eat spicy foods trumped all reason. I found myself ordering spicy foods at restaurants, or piling jalapenos on my nachos at the movies while taking no precautions.

Alas, spicy food-Nirvana was not to be mine. Along came my 2nd trimester and I could not even think about spicy foods without needing to take some Tums. That's no exaggeration. I had to sleep sitting at an incline and found myself waking up in the middle of the night with a mouthful of delightful stomach acid. It must be what antifreeze tastes like. My 3rd trimester was a nightmare once my blood pressure started to rise and I had to lie on my left side, my upper body elevated at an incline to keep stomach acid in my stomach. I hadn't eaten any spicy food since the end of my 1st trimester. How could this be happening?

.."If left untreated, the repeated flow of stomach acid can damage the gullet, causing discomfort and pain" (Furst, 2004) . By this time, I had years of pain from GERD. Why did mine stop?

In 2006, I was given an upper endoscopy. My esophagus was completely scarred over from stomach acid. My GI Doctor hypothesized my esophagus had scarred over so much, I could not feel my GERD symptoms. The symptoms I felt were from a condition called a hiatal hernia. (Check out the link- it's delightful) My doctor told me the hiatal hernia was part of the natural progression of my disease, but her money was on my stopping my medication, then eating jalapenos like a fool probably made it happen faster.

That almost brings us full circle to the "common sense" things Karen Gottesman discussed in her Teleseminar in June about being your own best advocate. (Check out my archives to read about it) Many patients stop taking their meds when they start to feel better, but it seems like common sense to take meds as prescribed. Sometimes, those common sense thoughts can get distorted after spending hours visiting more doctors and specialists you can even count. It's easy to want to stop something before asking your doctor. (Well, at least it was for me)

Today, I continue to take my GERD meds religiously and sleep propped up at an incline. I still have the hiatal hernia and have been diagnosed with Barrett’s Esophagus. This is most likely part of the natural progression of the disease, but stopping my meds remains in the back of my mind as that unanswerable question.

This is only one of the many ignorant things I have done. I want to share my ignorance so that my deeds were not in vain and that someone can learn from them and maybe the kids won’t try this at home. I will be sharing more of these in upcoming entries. I call them ignorant, not dumb because I did not do the appropriate research or even ask my doctor. Ignorance does not know and where there’s ignorance, there’s bliss. Dumb is doing things in spite of what you do know. Not that I haven't done my share of dumb things but this blog is about my living with Scleroderma, Sarcoidosis and my lack of box wine, not my adventures in the Navy and college. Good times

Thursday, July 8, 2010

Confessions of a Label Reading Nut

On my Face Book page today, I posted the U-Tube video of a man lighting his tap water on fire in my discussion section, to provoke a discussion on the environment. It also made me think of the things I eat. I am a label reading nut, but turn me loose at a Jack in the Box drive through and I'll order 2 tacos for $0.99. (I was very upset when they stopped calling them Monster Tacos) and a cup of caffeinated, carbonated High Fructose Corn Syrup (HFCS).

Anyone who has been grocery shopping with me has been driven crazy by my need to take things they place in the cart back onto the shelf because it contains high fructose corn syrup, aspartame and any artificial sweeteners. They find it hard to hide the look of frustration on their face when I replace it with a slightly expensive alternative

I am also a realist. I know there are certain foods that contain HFCS and eating them can be unavoidable. When on vacation left with little alternatives on the road when hungry, I break down and get them. How is it related to S., S. and Box Wine? Many who have autoimmune diseases take steroids and have trouble loosing weight after treatment. HFCS in a diet can make weight loss that much more difficult. On a personal note, I do notice a difference if my diet contains more HFCS than usual. I feel tired and I eat more. I have to get going to another doctor's appointment so I will leave you with some reading today.
Have a great day all!

P.S. If you have a sweet tooth and having trouble finding candy with all natural ingredients without HFCS, check out Becky Roka- It’s YUMMY!

High Fructose Corn Syrup and Diabetes

HFCS vs Table Sugar

The Documentary Food Inc. does a great job of explaining where HFCS comes from and how it effects our food chain. There's also a book for those with a longer attention span.

Wednesday, July 7, 2010

Lemonade, No Wine

I visited my Rheumatologist today. My prognosis continues to be stable. Woot. Woot. (No box wine yet, but a stable prognosis is a good thing) He's very encouraging and gave me some great advice about making lemonade from lemons. My lemon is sharing custody of my son with my ex. We alternate every seven days. It's great to have him for seven straight days without interruption, but the seven days he is gone are a bit difficult. My doctor recommended I use the time to take care of myself. It sounds common sense, but sometimes we all think of the last person to take care of is one's self. I could use the time to do yoga, work or just take some time to just be quiet. So being the good patient I'm going to follow his advice.

I already have started using the time, but coming from a 3rd party can be very encouraging. I felt I was being selfish not pining away for my son. Don't get me wrong, I miss the hell out of him, but I do know I am at my best when I take care of myself. I guess sometimes I just need to hear something from someone else to make it sound sane.

For further reading:
Life Experience Magazine
Motherhood Without the Guilt

Tuesday, July 6, 2010

Best 4th Ever

I defintely overscheduled myself. I had a great 4th of July weekend with my best friend from high school and her family. It was a blast. No crowds for fireworks and the best food.
Back to overscheduling myself... I ended up with some sort of flu on the way home and ended up in bed my 1st day back. I felt human again and thought I could be productive, but I was wrong. I didn't attempt to to yoga and I'm too beat to even spell check. So here's a video about a dog.
And keeping up with current events here's a classic from the Upright Citizen's Brigade. Enjoy
Hope everyone had a safe and sane 4th!

Wednesday, June 23, 2010

The Little Things

It's not big grand gestures; it's the little things that really make a difference in one's day.

I woke up late today because I took something to help me sleep last night. I felt rested. I should have because I woke up at 9:30. Already behind, I started on some bookkeeping work and realized the file I had been given was a complete (starts with cluster) expletive. I moved onto my next project which is a memoir. It was quite a story today. The file I refer to was given to me by my ex-husband and we are currently negotiating the terms of my family’s business. Writing about our split took its toll on me emotionally. I was mulling over how to blog about this without sounding bitter so I went to brush my teeth. I brush my teeth about 6 times a day. It's part OCD, part having Scleroderma. I have the partial facelift and nose job, compliments of Scleroderma. (Skin tightening of the face) It's not too bad, but I do need to brush my teeth after every meal to keep my gums healthy. Back to my story...

I was inside my head when I picked up my toothbrush and went for the toothpaste and saw two tubes. One near empty that would take a little work to get the toothpaste out and the brand new tube I bought the day before. When I went to bed last night, new tube was in its box. This morning, the brand new tube had been taken out of its box; the tamper-proof seal under the cap had been removed and was left lying next to the near empty tube. Now when I'm inside my head, it's hard to get my attention, but that brand new tube of toothpaste snapped me right out of it. It didn't just magically appear. Before he left for work this morning, my boyfriend- who was running late by the way, took the time to open the new toothpaste so I wouldn't have to struggle with the near empty tube. How thoughtful is that? That's not the first time- he does this stuff like this all the time. The first time he really got my attention was when we stayed at my dad's house. We got there around midnight after driving 8 hours, which my boyfriend drove the whole way. Exhausted, I thought he would crawl right into bed and fall asleep, but before he did, he grabbed extra blankets from the floor and stacked them under a pillow- for me. He remembered I needed to sleep elevated and wanted to make sure I did. I actually asked him what he was doing while he was doing it, I was so shocked.

So instead of my bitter mood, I get to share how lucky I am to have someone in my life that show me he cares with the little things that really matter.

I have to go brush my teeth again. I think I just gave myself a cavity writing that.

Tuesday, June 22, 2010

The Benefits of Being Your Own Best Advocate

Yesterday, I sat in on a teleconference presented by The Southern California Chapter of the Scleroderma Foundation. The teleseminar’s presenter, Karen Gottesman, is the author of "The First Year: Scleroderma: An Essential Guide for the Newly Diagnosed". The topic was "Being Your Own Best Advocate." She covered the types and subtypes of Scleroderma and provided a wealth of information on self-advocacy and how powerful that tool really is. This seminar will be available on the So Cal Chapter's website.

The seminar was geared for newly diagnosed patients. It was filled with information for "Newbies" and I felt was a great refresher for "Old Timers" like me, who found things out the hard way.

The full time job of managing any chronic illness as a patient can be overwhelming stressful, repetitive, frustrating... I could go on, but I think my profanity filter might malfunction, so I'll end here. Karen talks about the benefits of managing illness as your own advocate and calls it (paraphrase) a Journey, with the ultimate goal of co-existing with the disease. Scleroderma is different with everyone and can take one person in many different directions. Karen really drove the point home by presenting great ways a patient can be proactive about his/her own care and how that advocacy can restore some control. That's potentially comforting for control freaks as well as the easygoing.

One of the topics that got my attention was the "Common Sense Things” that can be overlooked. (Of course I found a way to make this about me. Put your hands on the screen and feel the egocentrism!) Through the years, I have overlooked some of these common sense things Karen mentions, such as scheduling my appointments, getting labs done and renewing prescriptions before I am faced with an empty pill bottle on the Sunday morning of a holiday weekend.(Oh yeah, I've done it.) These seem like common sense items, but let me give you an example. When I have a long streak of feeling great, surrounded by healthy people who don't have to manage the workload related to maintaining their health, I assume: I feel better, so I must be well. I do grow tired of the doctor's appointments, labs, infusions, invasive tests, procedures and on and on. Sitting in on that seminar yesterday for Newbies gave me a much needed boost and reminder to stay on top of things. It brought to my attention those red flags I ignore when feeling well. I am glad I had the opportunity to be reminded of the benefits of staying on my wellness path throughout my journey with Scleroderma.

I would love to read comments from any Newbies or Old Timers out there who had a chance to attend the seminar, or have read Karen’s book. To find out how to get a copy of Karen Gottesman’s Teleseminar, check out the So Cal Chapter’s website. Become a member and get updates and newsletters about the latest in Scleroderma treatment, research, advocacy and to find a support group near you.

Nation Wide Support Groups
Nationwide Chapters

Monday, June 21, 2010

Patient Advocacy for the Newly Diagnosed

Reminder- Join the So Cal Scleroderma Foundation Chapter for a special teleseminar Monday, June 21st at 11:00am
Topic: Patient Advocacy for the Newly Diagnosed(all patients and their families and friends welcome) Call 1.877.216.1555 Enter the passcode: 981555

Visit the Scleroderma Foundation's website- www.scleroderma.org
Looking for books on Scleroderma, check out the store The Scleroderma Foundation's online store or use the link below and shop Amazon.

Blazing Flare-Ups